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  1. Hello,

    I can’t believe I found someone suffering the same thing as me! I don’t have all the syptoms, however, I have most of them and I know for a fact what I have is “catchy”. I gave this to ALL of my boyfriends in the past!!!!!! My husband and I suffer daily with these symptoms and no one can figure it out. This is begining to get very scary!

  2. bonjour,

    Votre sujet sur ce “virus” m’a interesse, pour ma par j’ai un peu les meme symptome, cela fait tres longtemps que ca dure, en plus de tous cela j’ai deux barre brulante de chaque cote des machoires qui cause des degats a la deglutition, et qui me paralyse la gorge de temps en temps, pour ma par je pense savoir l’ethiologie qui serai sexuellement transmissible, j’ai connu une fille il y a environ 10 ans, cette relation a dure 3 ou 4 mois, separation apres tous ces symptomes son venus insidieusement,je sais qu’elle m’a cache quelque chose, j’ai entendu des collegues qui l’a connaisse dirent qu’un homme, moi pour ne pas me cite lui avait transmis une salopperie qui affecterait les machoire avec le temps et qui necessite une operation de la gorge. Je connais un homme qui a vecu une semblabe histoire, il on trouve son probleme apres l’avoir opere car cette “infection” avec cause des domage au niveau du cou/gorge, maintenant il vie avec une cicatrice d’une oreille a l’autre. Je fais tout pour eviter cela, je souffre en silence, je n’ai pas trouve de solution.

  3. I think I have a somewhat similar condition, though I’m not sure if it’s quite the same. About a year ago, I began to feel alot of discomfort in my throat and it won’t go away. I always have this feeling of tightness in my thraot and it makes breathing very uncomfortable for me, and it also makes speech difficult . Also, it makes my thoughts all clouded, especially in social situations. It’s very frustrating. I’m also constantly tired. I have no idea what it is and I really hope I find an answer because it’s really just ruining my life.

  4. Its quite true there is something quite bad out there. I believe I’ve got it to and from what I’m hearing word of mouth a large part of the city i’m in may have it also alot of people have been sick a long time. I’m starting to think you don’t even need direct contact to pick up the virus, just talking to someone in close quarters is probably enough, Its good that people are trying to bring this to light because the doctors up here in Canada don’t seem to want to accept that there’s something new or order the required tests to get to the bottom of it. I think the virus may be related to CMV, or HSV1( although lesion cultures don’t verify HSV1).The initial several months seemed to me as if I had CMV induced mono, and no one seems to really know the extent of its symptoms. I’ve noted facial itching and pimple like bumps ,along with mild tongue and mouth sores as symptoms also. I’m really not sure how bad this could get.

    REPLY: Thanks for sharing those details. Did you suffer most of the symptoms (physical and mental) listed on this site? If anyone else you know has similar experiences, please show them this site. Doctors usually say that viral infections are “self-limiting”. This is usually the case with many viruses. However, this one is persistent. Not much can be done anyway, when it comes to viruses, since very few antiviral drugs exist at present. The anti-enterovirus Pleconaril, which will be available soon, may be helpful if this chronic sore throat virus is of the enterovirus genus. – Hip

  5. I live in the caribbean and have these sympthoms as well.Is very frustrating that all medical tests indicate that I’m ok.I started to have these sympthoms 2 years ago,eat ealthy food,do excercise twice a week,don’t drink or smoke and still got this decease.I’m starting to believe 2 things; one is it could be a secondary effect of new medicine development such as LIPITOR ,just to mention a name not that it actually came from it. And my second theory is that there is something going on with the air we’re breathing call it the ozone layer effect or someone has an evil hand and is doing some bad to humanity. I just feel life is not what it use to be after these sympthoms came to my life. Sorry for me being melodramatic!

    PLEASE SOMEONE FIND THE CURE ASAP…

  6. I’am feeling very similiar. A sore throat that wont go away for the last 2 months. I’ve noticed myself feeling more depressed, and not very sociable. I went to the docter and he just said infected pharynx and gave me some ammonium trihydrate which actually did make a difference for as long as the antibiotics lasted. Before this i did have tonsilitous from a viral infection of some sort, I did chew tobacco for about a year, and was thinking this is what caused it. It would be nice to find a cure.

  7. Many people are reluctant to talk about this. I called friends at the CDC and NIH. Now these guys do not normally go “deaf” when asked a question. But that’s precisely what they did.

    There is a growing concensus that the current crop of “weird” and “old” disease were seeing here in the US for the first time in 50 years is directly related to the illegal immigrants entering from third world countries where their healthcare is far worse in quality than ours is. Many of these people carry parasites, infections, bacteria, and disease causing organisms that we’ve NEVER EVEN SEEN IN THE US BEFORE!

    Of course it’s a political “hot potato” and “incorrect as hell” to even mention this fact. But indeed – fact is precisely what is being said in the halls of the NIC and the CDC, The die is cast. We’ve got to stop illegal immigration or start running every bit of the immigrants themselves through serious diagnostic testing and treatment to clear up these diseases BEFOR they move out into US society.

    REPLY: Thanks for your comments. It seems that several factors combined are creating an unprecedented increase in infectious diseases worldwide. These factors include globalization and cheap air travel, so that a substantial proportion of the world population are in constant global transit (carrying their pathogens with them); mass urbanization, which brings people to live more and more crowed cities, and into much closer contact with each other; economic migration, which displaces great numbers of people around the world; human incursion into untouched natural environments and habitats (for example, cutting down rains forest, which brings humans into contact with previously unknown tropical viruses, parasites and other pathogens). Furthermore, global warming will soon be adding further problems and more communicable diseases, since the warmer climate will allow mosquitos and thus mosquito-borne diseases to expand from the tropics well into the temperate zones, perhaps as far up as New York. – Hip

  8. +1

    I’ve got the same issue, fear I may have infected others as well. It started with me thinking the anxiety was from a recurring sinus infection. Several rounds of antibiotics and over a year later, I still frequently have an inflamed throat, tons of mucus, anxiety / panic disorder, headaches, fatigue, and generally feel like I have a cold. I have no idea what to do, but I hope someone can figure this out.

  9. I’ve had the throat symptoms everyone has described here consistently for around one year. Sometimes the symptoms die down, and sometimes they become very very aggravated. I feel like i have to burp to relieve them and this only works to a very small degree. I’ve recently been prescribed omeprazole because my doctor believes I may have Gastro Esophagal Reflux Disease which would explain the throat symptoms. I suffered CFS (Chronic Fatigue Syndrome) for around four years when I was a teenager, and it pretty much disappeared. I think the tiredness, anxiety, depression, cognitive disability etc associated with the symptoms described on here are probably a side effect of the virus/Gastro Esophagal Reflux Disease as when I suffered with CFS/ME I didn’t have a throat problem.

    Please let me know if anyone else on here has been prescribed omeprazole for their throat problem. I will update my post here when i’ve completed my course of treatment.

  10. Early December I fell ill almost immediately. I woke and noticed some pressure behind my eyes that made me feel as though they would burst. Next came a strong headache that accompanied the pressure. At first I thought it was a sinus headache. I laid down and had a high fever that night. I took some ibuprofen and the fever died down and I began to feel ‘normal’ again. 2 days later I contracted a sore throat that just irritated me. The pain was minute but the odd thing was that is went from one side of my throat to the other jumping from side to side. This happened for about 2 weeks and as the days progessed I noticed that my sore throat was worse at night. A friend of mine had amoxicillan so I started poppin those like candy thinkin I was developing strep. I realize now that was idiotic but I was desperate to get rid of this nuisance. The last straw was when I woke and the left side of my throat had swollen and made me cringe to swallow. I went to the doctor and he diagnosed me with a mild respiratory infection/sinus infection. I took the Z-pack (arythromycillin, i can’t remember exactly) and the allergy meds he prescribed me and for 3 days I felt great. Then my subtle sore throat returned, again going from one side to the other every 2 days. I did the old fashion gargling with salt water and the next morning I woke and it was gone. Since then it has only returned once and I gargled and it disappeared leaving me with a farewell cough. I have spoken to several people lately and there are random symptons going around from people ranging to Utah to California to here in Texas. I’m still gaining back my desire and I’m slowly gaining motivation back. For a while I thought I must have been going crazy because I just didn’t feel like myself. I think that is the hardest is getting yourself back into the swing of just doing it. I sympathize with all of you who feel the same symptons

  11. hello,

    its almost three years im having this sore throat which wouldn’t go, i have to say unfortunately i have almost all the symptoms (except a few like aggressive behaviour and skin wrinkles) which are mentioned in the text and i cant believe someone else is having the same symptoms as me.i tried to get rid of the throat problem by having a tonsillectomy 1 year ago, which i thought would cure me , but even now there has not been 1 day without a sore throat. it is even showing the psychological symptoms and my physical and mental state is getting out of control. i have become a loner and surely tired of takin the antibiotics and other medicins which only give temporary relief.i gargle almost everyday to stay afloat. the feeling is just getting stronger that the condition wont improve. i dont know what to .please , if anybody has any kind of treatment or cure please do post at this website so that it could benefit all or mail at gudduamit11@yahoo.co.uk .

  12. I’ve had a similar problem that started in the beginning of December. It started like an ordinary cold, that gradually got worse. Pressure behind the eyes, sore throat, lots of mucus. I thought it was a really bad cold/flu. That cleared all cleared after about a week, except for the sore throat. That stayed and after another week or so I started to lose my voice. I went to the doctors and they said I’d developed Laryngitis, and he gave me antibiotics. Sure enough the anibiotics did the trick but after the course finished my sore throat has crept back and my throat’s been sore again for the past 3 weeks. I’ve tried herbal remedies, gargling mouth wash and salt water, drinking lots of water. Nothing seems to shift it. I’d love any advice!!!!

  13. I’ve had a chronic sore throat since April of 07 with a lot of these same symptoms. It started after I got a cold. All of the cold symptoms went away except the sore throat. I’m constantly coughing up mucus throughout the day and I feel like I’ve got congestion in my lungs. I’ve been to the doctor several times, they have treated me for post nasal drip, acid reflux, and allergies. They also tested my immune system and said everything was normal. I tried antibiotics and they had no affect.

  14. Wow! I’m getting kind of scared reading all of these posts. I caught what appeared to be a mild rhinovirus in September 2007. Mild sore throat, with lots of mucus coming from my nasal passages. It cleared up after about a week, but never truly “went away”. It seems to “come and go” as if I were constantly being re-infected with some virus. I do feel tired most of the time, and consequently have depressed mood. I’ve taken tons of Wellness Formula vitamins and drunk gallons of Emergen-C.

    I don’t known if what I have is the same as what is described on this site, but I am getting worried now and wonder if I should go and see my doctor.

  15. Hello, I caught cold sometime last november and everything cleared except for this sore throat. It just does not go away whatever I try. I tried Antibiotics, Paracetamols, Lemsip, Hotwater with lemon and honey etc., Vsisited GP couple of times and they said it is just common this time of the year and will go away after a while. But I am sure this is something different. It is not painful, but I have to constantly clear my throat and it is always in the back of my mind and is causing mood swings and these days, I am unusally aggressive. If anyone find any remedy for this please mail me at rajesh.vel@gmail.com. Thanks for this wonderful site. Hope we will all get some help and find a permanent cure for this virus.

  16. Couldn’t all your symptoms be caused by anxiety and stress? Anxiety can do all sorts of strange things to the body, from extreme paint to passing out!! I think a change of lifestyle would be the best solution.

  17. Yes it’s definitely anxiety. Look up Generalized Anxiety Disorder. I have it and I also have everything you have listed here. I also have normal test results. But i unfortunately failed the general anxiety test(questionaire), which proved to the doctors and the psychologist that in fact have generalized anxiety. It can make you very physically ill, because it does me. Presently all of my joints are hurting so bad i can’t stand it. It all came on slowly and my life has not been the same since. It has caused me to have: restless leg syndrome, heart palpations, chronic joint pain(tension), acid reflux, sore throat(sometimes it just feels like a lump, followed by soreness), depression, it can even make your thyroid levels high. When I go through my actualy mental breakdown about every two to three years, i get so sick i can’t even work or do anything for like 2 months. I get paranoid and start freaking out wondering what is wrong with me, then i go back to the doctors and pyschologist for them to tell me the same thing, “generalized anxiety.” Trust me when I say it feels more physical than mental. I had no idea at all that it was anxiety, I never thought I was that nervous before this happened. It sneaks up on you and confuses you because you don’t want to believe it is mental, because it doesn’t feel mental. i get it from stress.

    REPLY: For people diagnosed with Generalized Anxiety Disorder: this is a useful diagnosis, but it does not explain why the anxiety suddenly appeared in the first place. In fact, many viruses and pathogens cause both the symptoms of severe anxiety, as well as the various other symptoms of Generalized Anxiety Disorder, symptoms such as stomach problems, trouble concentrating, fatigue, muscle tension. Some doctors say that it is the anxiety that precipitates all these physical symptoms; but more probably, the viral infection causes both a brain chemistry imbalance that results in constant anxiety, as well as causing all these other physical symptoms. – Hip

  18. is there any verification that this is a real virus? it dosnt sound like there is and the symptoms are of hundreds of other problems. I have had most of these symptoms for about a year and doctors dont know what it is. There are hundreds of lifelong illnesses that will debilitae and deteriate you uintill the day you die. the only thing you can do is change your attitude and try to be happy how you are. I have met with chief doctors in the us and they told me that the medical community dosent know anything about thousands of viruses, and nothing is in the works to help with this because of funding and they have no idea where to start. I was sad to hear this but i realized that there isnt any point in trying to figure this dissease out. just live the best you can even if that means being sick for the rest of your life.

  19. I’ve been troubled by many of the symptoms mentioned in the original post, particularly chronic fatigue, sore throat (sore lymph nodes), mental fatigue (brain fog), difficulty concentrating, forgetfulness, speech problems, clumsiness, muscle weakness/fatigue. I also have suffered inexplicable depression (my mind is always full of warm / positive thoughts, but my brain for some reason always feels in a depressed state as if my serotonin levels are being effected by always being fatigued)

    What seems to make me stand out from everyone else who has posted here is that I suffered from this pretty much all my life i.e. over 20+ years. No-one else in my family has contracted or suffers from this so whatever I have is not contagious. I was diagnosed with CFS in 1998 & recent tests have showed that I don’t appear to suffer from KS.

    The doctors believe I’m normal, but I know this chronic fatigue / sore throat has affected every aspect of my life. My social contact is minimal and I just can’t physically pursue the activities I would really like to.

    In the past I’ve had blood tests and scans which have not revealed anything. At my age, I’m coming to a very crucial phase on many fronts and I really would like some answers to all I’ve been suffering from for all these years.

    I’d appreciate any thoughts/comments on lines of investigation to pursue and also any treatment which may help alleviate some of the worse symptoms of CFS & chronic sore throat.

  20. I’ve had something like this since August 2007. Several bouts of ‘flu-like’ bug (felt like the same bug) left me with a throat which is red and inflamed, waxes and wanes and never gets better. I’m on a very healthy diet, water etc. and nothing improves it. It’s draining my work, life and relationships. I also get heart palpitations – due, I think, to a general weaknes (The Weakness I call it) and frailness and inability to handle anthing stressful any more. I feel very old before my time! Waiting on CBC and virology results next week .. let’s see what comes of it, but I’m pretty sure everything will be negative. My throat is infamed, tonsils and epiglotis blown up like baloons. No other lymph node issues or anything worrying at this point. Dr was suggesting it is psychsomatic .. but I’m not sure.

  21. I have been sick for over one year. Started with a flu-like disease that I couldn’t “shake”. Went to primary care doc complaining of fatigue. Physician Assistant ordered blood work – tested for everything under the sun. Everything came back negative except Lyme disease but doc said it was not a significant finding and I did not have Lyme disease. About 3 months later, after yet another visit to the primary care doc, I got major arthritis – almost every joint in my body was affected. Was sent to rheumatologist who did more blood work. Test came back positive for ParvoB19 virus active infection. The Lyme came back positive again, but we determined that the parvo virus was cross reacting with some Lyme antibodies, I did not have Lyme disease, I had chronic Parvo.

    I am still IgG/IgM positive for parvo. I was starting to feel better (I thought) then I got hit again. My son’s school sent home a newsletter stating that Parvo was confirmed to be going around the school – I was not surprised, because I was feeling sick again. Only this time, I got the sore throat and thick mucous in the nose and throat, mild cough and depression and irritablilty symptoms.

    I have been sick for 2 weeks with this new one. I was researching my symptoms when I read this post about chronic sore throat virus. I wonder if I got the new virus or if I got hit with another strain of parvo???!!!

    I also have the stomach upset – very distressing for me. I already have Irritable Bowel Syndrme and depression – now I have a virus to blame them on.

    hope they find out what is going on soon

    deb

    REPLY: Thanks for sending in those details. It is interesting that chronic Parvovirus can cause a Lyme test to come out positive, even if there is no Lyme disease. Have you tried intravenous immunoglobulin? Parvovirus B19 apparently responds well to intravenous immunoglobulin. – Hip

  22. I wanna tell everyone i went on a trip to the philippines approx. 2 months ago and contracted some kind of debilitating virus..i got this virus almost during the end of my 3 week stay in a town called ginatilian..near cebu..it started with a very sore throat and 2 days later after returning home in america..i broke out with a puss like red rash all over my groin-leg area my arms and my chest..i had a mild fever also and went to the hospital where they diognosed me with scarlet fever? i was given ammoxicillan which cured the rash but many other new symptoms still persist..very bad mental state(brain fog) loss of concentration..feeling of mild dementia also my body aches all the time and my skin is starting to get loose and wrinkling almost like i was 20 yrs older than i am at 41..all these symptoms have started approx. 1 month ago..only 1 month after catching this virus..could this be from contaminated water i bathed with? or maybee coming in close contact from livestock?( cockfight roosters) or maybee a mosquitto bite? and what should i do to try to treat this?

  23. hi, just came across this site in my mad search to find out what on earth is going on with my throat some elements in this sounds very similar to what im going through.

    I have been getting constant sore throats for over 6 years now, in the first year they did bloods tests thinking i had glandular fever but they told me it wasnt infectious and was just a sore throat. After another year i went back and told them i must have something wrong as it hasnt cleared up, i was sent to a throat specialist who said i could have my tonsils out if i wanted but the problem should just subside..

    6 years after it started my throat looks a total wreck and it has spread right down my throat, its just slightly raised bumps on the walls of my throat and my tonsils and the back of my tongue. Quite often my lymph nodes swell, at the minute its just my right side.. its really odd!!

    Its actually driving me mad!

    Having said all that, my boyfriend of 5 years doesnt have any of the symptoms and rarely suffers from sore throats or many health problems, so whatever i have isn’t contagious.

    Anyone got any idea what i might have?!

  24. wow! look at all of these people with the same sore throat as me! i came down with it in early december, and after a diagnosis of “laryngitis”, “upper respiratory virus”, then “bronchitis”, as well as blood tests which were all normal, i still have a severe sore throat – tonight it hurts so much i can barely swallow – i dont seem to have the brain symptoms yet, but after reading others’ comments, now i’m worried that i’m heading for the “brain fog”! it doesnt help my throat that i teach 4th grade and am talking nearly all day long… i am just amazed that doctors have no answers for this – it is very frustrating to know that this sore throat that i’ve had for bearly 3 months could go on indefinitely…it really takes away my desire to interact with anyone because it takes so much effort to talk – i have 2 kids at home, and i would like to stay active enough for them as well as for my husband….this is really a drag, and advice that is based on “just let it pass” is really unhelpful!! and as sick as i have been lately, no one else in my family has been sick at all…i am hoping that the 300+ germ vectors that i’m around on a daily basis are the reason for this ongoing sickness, and that when i leave for summer vacation i will feel much better!

    good luck to everyone!

  25. haha….its ironic my sister had it ,my mom and i just got it,and we seem to manage to stop it or at least slow it down.we believe my sister has gotten rid of it completely,but ill have to check and see. some symptoms are headaches,dizziness,shaking,sever fevers, hot breathing(above usual)sudden eye blurrs,nonstop coughing.I believe it came on the easternwinds.if not treaded IMMEADIETLY it will continue to spread troughout the body.for some people it only last a few days others months.

  26. I discovered your chronic sore throat/mood virus -an emerging new virus site yesterday because one of our parents said her daughter had had a sore throat and a headache that has resulted in completely numb legs. She cannot feel anything although she is able to walk. I was searching the web for clues to this odd ailment and found you!!! I work in a middle school office and see dozens of sick kids daily. I am the clerk, not a nurse, however 16 yrs ago I had a sore throat followed by a resporitory inf that lasted 7 wks. Drs say I have Fibromyalgia, CFS, and EBV. Normally I try to ignore it but your site has peeked my interest. Last summer EBV became very active again and since then I’ve felt terrible every day. Dr isn’t treating it though–says nothing can be done. I think after I read more on your site I’ll get a new dr. (again). I don’t know your name or who you are but I’m grateful to you for putting up this site.

  27. I have all the symptoms and have convinced myself I have got HIV, I am going for a test on Tuesday, Every time I have been back to my GP complaining of a sore throat that I have had for 6 months they send me away, no swob no tablets nothing……..

    I have changed doctors and will go there tomorrow, I have been so worried and upset that seeing this site has helped calmed my stress a little, Has anyone recovered fully apart from Sky…

  28. There is no “new virus” emerging. sorry to burst everyones bubbles. The symptoms alot of you are experiencing are big sign of Chronic Fatigue Syndrome, Mono, allergies, or even common flu/cold.

    Sore throat, fatigue, dizziness, swollen lymph nodes. are symptoms of pretty much ANYTHING

    Anxiety, stress and depression also play a big role in this as well. Its very possible you might be worrying so much that you are making yourself sick.

    And if you have time to notice your skin is wrinkling……i dont even know what to say to that. people get old, its apart of life. And STRESS also causes wrinkles which alot of you seem to be experiencing since you are so worried about whats wrong with you.

    I reccomend getting a hobby other than browsing the internet to find out whats wrong with you. That’s very unhealthy and all it does is convinces you that you are dieing of some disease.

    Occupy your mind with another hobby you enjoy and dont think or worry about whats wrong with you and who knows, maybe you might notice a change in your mental and physical health.

    Best luck to you all

    Tye

  29. Tye, I am somewhat an intermediary between you and reality. Post nasal drip is not a symptom of anxiety, however; I agree that there is no new virus emerging. It is doubtful there is a single causitive factor in this blogger’s symptoms.

    There will be allopathic blood tests that come back positive for these symptoms, but its extremely difficult to find the correct one, and is inefficient economically.

    Might I suggest prednisone (not methyl or prednisolone) for the blogger. This coupled with ethanol somehow made my symptoms go away for a day. Unfortunately, these are terrible to take long term.

    Famciclovir has promise for me, acyclovir not so much. Ceftin does not decrease respiratory symptoms, but improves QOL. Everyone says their symptoms mimic yours.

    Mine not only mimic yours, but I have I done as much research as you have. I have yet to try antidepressants, even after 3 years of torture. Its my next step, because I will do anything to get back what I had.

    My onset was body fluid contact, and was probably exacerbated by administration of immunosuppresants to eliminate swelling of the tonsils. I’m 21 and will be graduating soon.

    REPLY: Many thanks for those interesting treatment ideas. Famciclovir is new to me; I tried acyclovir for 6 weeks with no discernible improvement. I will look into this. The powerful antiviral valganciclovir is something I may also try in the future – but there are risks. I have not tried prednisone, but read (ref) that it often works just for a few months – and does so by reducing the fierceness of the immune response, which makes you feel great; but it is possible that the virus will continue multiplying in your body, so that in the long term, you may not benefit. By contrast, the Marshall Protocol (refs: 1 2 3) tries to cure CFS by boosting the immune system, and with MP you actually feel worse for several months before you get better. I tried testosterone, and it did help with the fatigue and concentration, but it is not the cure (or near cure) that I seek. Thanks once again for writing; if you have any another other suggestions, please post them. – Hip

  30. Also, there are many similarities between prednisone and anabolic steroids. If you are a man, low dose testosterone therapy may be effective. It will eliminate endogenous production, unfortunately. This undesired effect can be quelled with either intermittent methenolone acetate (discontinued) or human chorionic gonadotropin. Oxandrolone is an immune system booster given to AIDS patients, and has shown some in vivo immune improvement, long term use can cause liver test abnormalities, whereas methenolone acetate will not.

    If you are post-menopausal, low dose test for fatigue has been patented.

  31. Wow !! I have been suffering from this forever the pins and feeling cold my lower gum line dropping and becoming numbed, constant sore throat , respiratory problems, weight loss & loss of appetite, and the constant fatigue. I don’t feel tired but if I stop moving and sit on a chair or couch or lay on my bead I go to sleep . I initially thought it was cancer of some sort it has all the signs but after a testing I was negative of cancer which was a relief but I dunno if my doctor thinks I am crazy or what cause we keep trying things and it’s not working.

    REPLY: Absolutely perfect! In your first two sentences here, you neatly summarize all the main effects of this virus – including the very strange way it makes you fall asleep as soon as you sit down to take a break. This is more than just fatigue; it really feels like having a sleepiness drug sometimes. It is a very strange virus. It may be a stronger version of the ordinary Epstein-Barr virus or Coxsackie virus. Perhaps you might see you doctor to get tested for these. Please write again if you find anything out that everyone else here can benefit from knowing. – Hip

  32. I also understand the go get a hobby thing but I am 20 years old Played Rugby and Hockey pretty much all my life and I worked out every day. I slowly have been getting weaker and just not able to do those kind of things any more. The respitory is what baffles most people I have talked to because in the sports I played you are pretty much going all the time, and I can barely run for a long duration of time. I do not smoke and occasionally drink, I have been taking puffers and everything they temporarily work. I do not have asthma and was tested for cancer , got a physical completed there is nothing showing, but I try to do physical activity and cannot . Also i would have no reason to be depressed or stressed . The only thing I am stressed out about is the respitory , sore throat , numb gum line , and lack of strength .

  33. I just want you to know that I too suffered from a sore throat, chronic fatigue, and some of the other symptoms mentioned for 10 years. When it first started, I went to two or three specialists, because I thought it might be cancer in my throat because I was in pain EVERY day. They didn’t find anything and were insulting about it so I gave up looking the medical route. I tried eating healthy, exercise, vitamins, yoga, sleep, everything I could think of, but I always had that sore throat. Finally, I began reading about Chronic Fatigue and I ended up on a site that listed side effects of the mercury in my dental amalgams. I had heard of the toxic effects of the mercury before, but I never associated them with my health problems and I wasn’t sure that I believed it. I never thought that what was in my mouth would inflame my throat, but materials are released from the “silver” fillings into your saliva, and you swallow them. I was so tired of having that horrible sore throat every damn day, so I took the plunge. Seven years ago, I had my amalgams removed and my throat stopped hurting, my energy returned, and I also stopped having chronic yeast infections. Most people consider the amalgams safe, but there is a portion of the population (about 10%) that are very sensitive to their contents. I am sure that it is not the cause of everyone’s illness on this page, but I wanted to open your eyes to a possibility, especially if you had dental work done around the time your “illness” began.

    REPLY: Many thanks for sharing that Kathy.

    – Hip

  34. Im 20 and i go to school for respiratory therapy and manage a rock supply company.

    When i was younger I used to suffer from many symptoms like these, mostly had an ongoing chronic sore throat that I would get so frustrated over since it lasted for months at a time. It was all I thought about and I would spend a lot of time researching to find out what was wrong.

    I then noticed the more I occupied my mind with work and school, the less I noticed it.

    Ive been sore throat worry free for about 4 years now. Im not saying all of you have this problem. It’s what happened with me and im suggesting it to you too.

    I definitely think alot of you may have something else than a new emerging virus.

    Tye

  35. Oh my “GOD”- this is what my whole family has – please help us! Help me Please! My littlest is only three. Can someone send this site to the CDC?

    The doctor’s say we have allergies! This is to shut me up because of our constant visits and none of the meds perscribed work.

    Please don’t leave me out – what is this?

    Sharyn

  36. I cannot believe what I’ve been reading this chronic sore throat of mine began in Sept 07 whilst in China with my wife I also suffer nausea I do not have trouble swallowing I am now not as interested in food I get like a sunburnt head feeling which is probably pins n needles or flushing my GP looks at me silly I’m sure & reckons its reflux & has put me on nexium, I have also been on amoxycillin I’ve had a number of HIV & Hepatitis tests all negative-I live in Western Australia & am crying out for an end to this problem

  37. I’ve had tonsillitis during all of my childhood, and a chronic sore throat since early 2001. I had mono, and a bunch of colds and noticed bumps at the back of my throat that never went away. When I started eating an all organic raw/living food diet these bumps completely stopped bothering me, but didn’t fully go away. A year after following the raw food diet ‘incorrectly’ eating too many natural sugars, fruits, nuts, and not enough greens and sprouts. I fell back to regular vegan cooked food. During my year on the ‘normal vegan diet’ These bumps got wild and symptoms of chronic sore throat returned with a vengeance. The bumps also began to spread to the roof of my mouth. I also noticed that although I am in my early twenties I am constantly tired and sleepy.

    If there is a cure for all of these weird auto immune diseases, viruses, bacteria and whatever the heck this is – it is to be found WITHIN OUR BODIES!

    Only the immune system can truly heal us from the inside out.

    I am now back on a 100% organic and living food diet. This time I follow the Hippocrates Health Institute Plan, with wheatgrass juicing, vegetable juicing, eating lots of greens sprouts, no cooked foods, no meat no dairy, and NO SUGAR! Not even fruit! Sugar feeds the ‘bad guys’ while a diet high in foods that contain antioxidants, ENZYMES, vitamins, minerals, immune boosters, and oxygen boosts the immune system, and allows our body to destroy the offenders.

    According to Dr. Brian Clement of the Hippocrates Health Institute it takes 7 years to fully renew our organs and tissues!

    Thus it takes 7 years to fully heal and rejuvenate our system. But we can halt the symptoms within months, and sometimes even weeks.

    I have just started this “Living Food Diet” the ‘correct’ way this time. I immediately felt an increase in energy, I also noticed that with all these wheatgrass and green juicing therapies I’ve felt my body fight more actively. I’ve actually been feeling like I have a mild fever, without actually having one. (Which is a good sign because it shows that the immune system is trying to fight something off) .

    I believe that by supporting our immune system with the right nutrition we can reverse any symptoms and restore perfect health! Check out the Hippocrates Health Institute and the raw/living food diet in general. It is a commitment to health, and it has worked miracles even for terminal cancer patients!

    I am just starting my vigorous battle with these mysterious bumps, I will be sure to leave a note with how it goes.

    All I know is that if the Raw/Living food lifestyle has reversed terminal cancers, diabetes, heart disease, and a whole bunch of other disorders and imbalances – it will have a POSITIVE effect regardless. Try this diet and you will see improvements.

  38. I received response from doctor that the above symptoms are very similar to symptoms of “Chronic Fatigue Syndrome”.

  39. I seem to have all the symptoms. Mine started with hoarse voice and feeling of fullness in the throat, swollen glands, I had stomach rumblings and lots of gas, my eyes are dry and tired. I used to be extremely energetic person, now I am totally worn out all the time. Had battery of all kinds of tests and nobody seems to know what it is, basically I am always told it’s in my head. I am also depressed and anxious and I have lost joy from simple pleasures of life. My joints are aching and I just had slipped disc in my back. Through all this the raw feelinf in the throat persists and pressure in the neck. I also became unsociable. It is hard to live this way, because that’s totally not who I was before. What can be done to get rid of this virus? I had been on antibiotics, yet nothing helps.

    I am going to see naturopathic doctor, supposedly best in North America, he does iridiology, so I will keep you posted what he will come up with!

  40. I had a ‘sore’ throat and swollen glands, and at the time of infection, apart from being in bed for a week, I had very sensitive teeth (not gums), my hair follicles hurt (as in touching my head and slightly pulling my hair), very sharp earache, and a runny nose (but not thick mucus). I had pain along my cheek down the sides of my nose and a blotchy effect on the skin on my face (previously I had very clear skin) to the extent that I went to see a skin specialist because I thought I might be developing a skin condition. And of course I had fatigue! 18 months later and I still have a sore throat with a bobbly texture on the roof of my mouth (which comes and goes), intermittant earache and the very irritating skin condition that makes me look like I am always reacting to face cream or something. So far I haven’t noticed any symptoms that fall outside of the region around my head/face, other than tiredness. I have recently been to E Africa for three months, and the condition was definitely aggravated there. I had loads of tests when I came back, but nothing so far has shown up. I think my strategy for coping will be a quiet lifestyle (I never wanted to go clubbing anyway!) and lots of good food, R&R and PMA. I like the idea of a living food diet, I might try it. It is hard to deal with sometimes, but I am fortunate in that I am currently still functioning mostly normally, just pretty tired. I hope to contain this virus by being sensible, staying positive and not overdoing it.

  41. My boyfriend has some of the same symptoms; rumbling stomache, farting more, a white tounge…But not really any of the psycological problems such as the lack of motivation. His libido has defienetly not decreased. Do you guys think that he has the same virus or something else since he does not have all of the symptoms?

  42. Has anyone tried a salt inhalation? I have been trying this (as in salt in boilng water, covering your head with a towel over the water and breathing it all in). I also gargled with salt water, and it’s made quite a difference to both my throat and sinuses. An ENT specialist told me to try this for two weeks, twice a day. I connected this to how I felt when I spent three days at the beach swimming in salt sea water (and probably swallowing loads of it). I felt amazing. I don’t know if the difference will continue, but I will see what happens after two weeks and I stop.

  43. I have had something similar but it started after a trip to Japan. First I had intestinal issues then it seemed to creep up slowly to the throat as a slightly irritating sore throat every once in awhile. The pain got worse and worse and now is so bad I cannot even sleep through the night. I have been through about nine doctors and it just seems there is no hope. I have another appt. here soon with another. I think I will got to an herbologist after this. I was wondering if any of you others have been overseas when it started? Good luck to us all.

  44. I have been to Europe last year, but mine started month ago or so. I am extremely tired. Yesterday I went to leading herbalogist in North America and he did iridiology He told me that I did not have the virus in my body, he said he could tell by listening to my pulse, but I had extreme toxicity in my body, my glands are swollen, because they are fighting the toxicity. He gave me Rodiola, this is what it does:

    Helps the body adapt to stress.

    Strengthens immune, nervous and glandular systems.

    Increases resistance to fatigue.

    Appears to improve cognition and memory function.

    Also some Royall jelly ginseng in liquid.

    We will see what is going to happen, I will keep you posted.

  45. Thanks Wendy that is good to hear. I think I will try the same. Mine started a little while after I got back from Japan.

    I was reading another thread and several people had the same problem after traveling to different countries. I hear ya on the tired issue. I was sleeping 12 to 15 hours a night. I used to be a pesonal trainer and I have been working out for 5 years without even missing a week. It has now been a month since my last work out and I just do not have any energy to do anything. I quit my job as a personal trainer and it has also been effecting my other job. I hope this works. Thanks again Wendy.

  46. Shouldnt the WBC/Lymphocytes count in the CBC blood test go up , with any viral infection?

    If these values are ok , is it still possible to have a viral infection.

    I have been having sore throat for around 4 months now.. i am just trying to find out whats happening??

  47. Not sure about the WBC in the CBC with the viral infection but I do know mine now has that bloody taste to it. I think I will try another doctor and give them some more of my money.

  48. It is weird I have contracted the same issues as the symtoms as what is listed I am suprised that it doesnt have a name yet or they now what it is.

  49. Here’s my story.

    *Was a pretty healthy male in my 30′s before all this started.

    *This is coming from someone who didn’t ever go to Doctors for colds or sore throats before.

    Started dating a girl from Eastern Europe who had only been in USA for 2 years, back in July. Don’t know if this is relevant, but thought I would throw it out there based on prior posts.

    Few days after first date, I got minor sore throat.

    It wasn’t bad, but didn’t go away for 3 weeks.

    Okay, so I go to the Doctor and test positive for Strep. Take antibiotics and feel better. After the antiobiotics I go to the Doctor again and culture reveals Strep.

    Same thing gets better then comes back.

    Okay so after a few rounds of Strep it’s still around.

    I go back and get tested for Mono, it’s negative, then 2nd test for Mono is positive in November.

    Also, have a positive yeast growth (not bad couldn’t see it) in my throat.

    So I have mono for a few months (that was fun) and here we are in April and my throat pain still comes and goes.

    Had 3 cultures or so that were fine, no strep or anything. Five days or so I feel kind of okay, then five days it’s bad, then repeat.

    My latest culture showed another candidas growth (the second one).

    Anyway they are talking about taking my tonsils out, they have mentioned allergies.

    But I KNOW it’s something more.

    All my other major tests have come back fine.

    Forgot to say I’m also very tired often, getting more frequent & worse headaches than normal. The fatigue sweeps over me and I have to sleep. It was very bad during acute phase of mono back in NOV & DEC.

    I shouldn’t be having mono like symptons 5 months later, and I had recurring strep & sore throat issues months before the mono, so they are two separate things.

    Other symptons:

    *I also get those white bumps in the back of my throat that stink… I also get very dry, scratchy back of the throat with a little lump that never goes away. Thickish mucous from the nasal area that drains down my throat nightly.

    The back of my throat is so raw & sore from 10 months of this crap not sure I’ll ever recover…

    I drink tea & gargle with saltwater daily, and rest all the time…

    *I definitely noticed some parallels between me , and others in this thread so I thought I would share my ongoing nightmare.

    I have an ENT appt. in about a week.

    This 10 month nightmare has to stop…

  50. To;Wendy, April 4 ’08 Any answers for a cure? It;s interesting , at first I thought it was a mild form of C. pneumonia or mycoplasm, now I agree with most of the other posts I think it’s a virus, maybe a debilitating man made one, who knows.

  51. I have had all the symptoms above and thought I was going out of my mind……2 sinus surgeries and 6 hospital stays in one year. It really does feel like a virus that never quite goes away, reappears and may worsen and also bring on secondary infections. The drugs seem only to work in the acute periods and then your left with the next chapter of symptoms. Tends to move around but mainly affect 2-3 organs. Scary. Glad to find you all here.

  52. About 2 and a half years ago I got sick from many different things. I had some strand of Mono that lasts six/seven months – no treatment available, and had strep twice. Around this time bumps in my throat started multiplying. They were tiny at first and have just spread and multipled. I have chronic fatigue, extreme anxiety, major weight loss, the skin wrinkling and blotches. My attitude and demenor have been sevelerely affected and I have extreme on and off depression. Its so strange because I have more extreme colds and even got the flu – I never even had the chicken pox when I slept in a bed with my sister who did. My stomach makes really loud noises at all times of day, but much worse at night when I lay down. There are other symptoms I also have which are mentioned such as thick mucus- that is not normal for over 2 years. I have been asking doctors for a long time now when ever I have been sick or had to go to the hospital what these odd sympotoms mean and even referals to counselors. It is refreshing yet terrifying to see something pull it all together with no resolution attached.

    • Hi…. I have the same skin wrinkinling problem.. I am 27and feel like 47 with the wrinkling increasing drastically week by week. Please let me know , if u know more about this. I am tired of this sorethroat , burning/ tingling sensation and premature aging .

  53. To Steve: The naturopath told me that my system was toxic, so he gave me Rhodiola, which cleans glandular system, also Royal Jelly with ginseng (liquid), stomach tonic, because my stomach seems to have problems too and some enzymes. I am to see him on Monday. Listening to my pulse, he told me that is 70 different sounds of pulse and that I did not have any viruses. So I will keep you posted. I do have little bit more energy, but I am still depressed, which is not very usual for me, I have to ask him about that too.

  54. Hi Wendy, thank’s for the info. I was just thinking, Borna Disease Virus (BDV) might account for some of the symptoms and some other agent for the rest.

  55. To Saryn, My whole family started having these symptoms within the past three years. The biggest shock for me has been to see my children having aged looking skin, I never mention this to them of course.We have fatigue, hair loss and my skin especially looks at least 30 years older with the fine wrinkles and improper healing.It all did start after they got what I assumed was the chicken pox. My doctor and 2 dermatologists would not believe that my wrinkling skin started suddenly, it is very distressing. We don’t smoke, drink and we eat healthy and exercise. I lost my energy and cannot do the same things that I could 3 years ago. I have done cleanses, taken anti-depressants for this brain fog and listened to strangers tell me that there is nothing wrong. My children and myself have joint pain and are now easily fatigued. If I bring this page to my current doctor I suspect he would roll his eyes… Again, we are busy , have a family life, not looking for a way to get attention, just trying to find out what it is and how to get rid of it.

    The elastin thing is most prevalent in my case, thanks for this.

    • Hi … Even I am experiencing the wrinkling of the skin.could you explain more… As my doctors neglect any of those as I am still 27. But I really know what’s happening on my body

  56. I have had a chornic sore throat for 18 months. I have had 8 scopes and ct scan. I have been to a speech pathologist and still no definite answers. All I know for sure is that my throat hurts all the time.

  57. most of what I have read sounds like candida to me.

    cronic stress, bad diet, antbiobiotics, just is the perfect

    setting for candida.\,

  58. I’m very happy to find this site. I am a heathy, 24 year old female and I have been struggling with this for 5 years. I believe it began after I got a severe case of tonsillitis. In the next 3 years following, I had mucus in my stool, canker sores on my tongue, rash on my hips, constant yeast infections which I was convinced were some type of STD. I was tired and unmotivated–all this right after starting college, it sucked. I want you all to know that it gets better, it just takes time. Everyone carries many viruses, let it run its course, keep a positive attitude, and eventually the effects will diminish greatly. What I have is contagious, even today, which is the hardest part. Whereas before the rash and EVERYTHING was contagious, now its just throat irritation but still devestating to me. I think it is related to the Epstein-Barr Virus, and tends to flair up more-so when I worry about it. I still have yeast issues, and am trying to avoid certain foods, and clear out my system. I will keep you posted on the progress.

  59. hi there , my bf has been having something similar going on with him as well, what ever it is we both have it now, constant sore throat the docs have ruled out the obvious things, im feeling not so great so ill be short but i recently came across similar symptoms under ppl suffering from candida over growth. plz research this, some stuff seem very simliar, im going to have our doc test us…..im tired of feeling this way and all test results are normal:(

  60. Hi, I live in UK and have been unwell for 8 years. From reading all the above and from my own experience, it would seem that most sufferers had the flu or something similar which never seemed to go away. I had never had the flu before and any colds I got went away very quickly. At the particular time I caught the flu I was in a really bad place emotionally, with my husband seeing another woman & us trying to sort out the best solution for our children. I definitely believe that this helped the ‘virus’ take hold. Like so many other posters, I was always strong, organised and very able before becoming unwell. I was tested for everything and, after 2 years, was told it must be ME and that nothing could be done. The one constant is the sore throat. I have developed allergic rhinitis, initially seasonal but now all year round. The joint pain has come and gone but recently seems to have settled on my right shoulder, elbow, hip and knee. The hip feels as though it has come out of its socket sometimes but I have had it checked and am told the joint is fine, so it must be the connective tissue. I wear spec’s and have my eyes tested regularly but nothing shows up that explains my bouts of ‘fuzzy’ sight. The brain fog comes & goes – sometimes I can’t get 3 words out and other times I’m fine. A recent test by my GP revealed Hashimoto’s Thyroiditis which is an auto-immune disease. It comes from the thyroid being attacked by one’s own immune system. I believe this is a result of so many years of my immune system being weakened. I am worried that other parts of my body will also be ‘attacked’ by my immune system as time goes on so I would love to hear from anyone who has found anything which alleviates any of the symptoms. One effect of this illness is that I am only able to do very little work, so do not have a lot of money to spend on speculative treatments.

  61. Thank you for directing me towards the Marshall Protocol Web site. It is much appreciated. I apologize for being so inquisitive before. In addition, I suggest one checks out the Wikipedia discussion page on Morgellon’s. It is much maligned.

    In addition, cognitive function drastically improved with famciclovir, however; I’ve had little progress with physical strength.

    Best of luck.

  62. For my story read April 13th… “Frustrated”

    I said I’d report back after trip to ENT, and here it is:

    Not much to say, he basically said wait 4-6 months, and if my symptons didn’t get better then we’d look into having my tonsils out. He said he thinks all my symptons are mono related, but that was last NOV. I was diagnosed with mono.

    He also said mono can morph into or become CFS, and you can have that 4ever, yes 4ever he said. Although he said that’s very unusual.

    I’m definitely interested in reading more about connections with the candida yeast thing like a few other posters have touched on.

    I’ve had two yeast things in the mouth, and constantly have dry, scratchy, itchy, thick mucousy things happening in the back of my throat.

  63. This article matches every symptom I have excluding pins and needles in the legs. Weak shaky legs, yes, which I’ve noticed recently and it made me wonder why. I am 39-years-old and have been dealing with a chronic sore throat for 5 months. I’ve seen 2 ENT’s, 1 Gastroenterologist and my general practioner. None of them knows what is wrong but guess that it’s acid reflux and allergies. I disagree. I’ve tried every drug possible to rid myself of the red sore inflammed throat which I wake up with and live with all day, worse by the end of day to where I almost cannot talk due to the pain. Not that I read the article, I did start having gastointestinal pains and bloating and was ‘diagnosed’ with IBS. Then, the above-mentioned came afterwards. I have the mood problems as well with unusual anger bursts and depression. I’m not myself. None of the mentinoed doctors are helpiong to rid me of this problem. It’s a scary and hopeless feeling. To boot, I am a singer and haven’t been able to do so for 4 months.

    Is there a remedy for this condition? What can be done?

    Thanks.

  64. Getting overwhelmed just reading all of this! I will briefly describe my situation and hope to hear from ‘someone out there’ who understands:

    I had a very serious “bowel episode” near the end of January. Starting at 3AM, I could not get off the toilet for about 5 hours. So unfortunate that I had to travel to a conference I was hosting that exact same morning. Long story short – I made it and eventually the bowel activity settled down.

    2 weeks later I developed what I thought was strep throat. White blisters in my throat, fever, etc. Additionally, I stupidly BIT the cuticle of my index finger and a nasty infection started in there that has eventually led to the loss of the nail (still dealing with this in late April). Additionally, I had a urinary tract infection.

    Was put on a course of antibiotics for strep throat and the UTI, the first week of Feb 2008. To date, have been on 4 different courses of antibiotics (a 3-month period). I am allergic to Penicillan (reaction occured when I had mono at age 16); so have taken everything else. I still have white blisters in my throat and it is still sore.

    My muscles are beyond relief. Ibuprofen does little or nothing. I wake up in the night to go to the bathroom and almost cannot walk across the room to get there. Ankle joints do not want to move, hips feel locked in place. Everything in my body hurts. All day, everyday.

    I feel fortunate if I sleep until 3AM. It is usually 2AM I wake up and cannot go back to sleep until my alarm is ready to go off at 4:45AM. Somehow I make it to work and back everyday, but most days, I wonder how. I have a terrible time just standing up from my chair at work… and then making my legs work, to walk across the room.

    I try to exercise. I really do. But I feel so damned little desire to do much to help myself anymore. This is horrible and SO not me!

    I have gained 10# in one month. I cannot tell you why. It is almost all belly fat. I was 30# overweight prior to that and never able to lose one single pound, even though I went to the gym 4 out of 7 days for an entire year prior. (You need to understand I was always SKINNY, with a 5’7″ frame. I now weigh 183#. I never weighed that much during any of my 3 pregnancies!)

    I am depressed. I try very hard for the sake of my family to hold my head above water. I do not know how long I can continue. Everything hurts and I just want to sleep.

    My doctor is done with me. Said she would send me a referral to an ENT (because the throat does not heal), but I have not yet received the referral in the mail. Now I will have to try to force myself to call the doc’s office tomorrow to get some help.

    I am out of energy. I am out of resources. I really do need some help. Some advice. Something. Had you known me a few years ago, you would have been impressed with my upbeat attitude, my energy, my zeal for life! Not now.

    My email address is perk@suite224.net. Please help me.

    Cathy

  65. Well, I’m glad I found this site! After reading a bunch of your responses this virus seems to be a really big deal!

    About 3 weeks ago i had a nasty flue, and yet till this day after taking cold and flue medicine I wake up every morning wanting to die, because of the pain i have in my throat, hard time swallowing and constant diariah. I am 26 years old, male. my symptoms are getting worse, I don’t have any more energy, struggle every day, this thing is killing me!

    We need to report this to someone or something needs to be done!

  66. hi, I just want to share that about 2 months ago I had a col/flu/bronchitis. After it went away I developed fatigue,headache & sore throat. It hjas been a sloid month now that I have had this sore throat. I went to the er,urgent care & a new dr. and noone has been able to explain why? I never get headaches OR sore throats,I don;t have allergies,never have. So why does this sore throat persist? My glands feel tender my throat is raw & beet red. I have had numbness & tingling in my hands & feet,mostly on one side and Ironically I can relate to those little pin pricks someone described above! If I had not experienced them I would never had been able to relate.It almost felt like someone was stabbing me just below the surface with sharp pins. I experienced theses sensations all over especially my feet. I also have two rashes which I never get either.One looks like dermatitis on my inner thigh which I’ve treated with antfungal & now cortizone cream,neither is getting rid of it. I feel totally tired & my headache is persistient now for 6 weeks. I have had EBV,Lyme disease & CMV. Never have I felt quite like this. Perhaps it is a new virus emerging. I developed this while living in new city the last few months where I traveled much on trains & subways. Maybe its an airborne virus. Anyway I hope we can figure this out soon.

  67. You are creating this “disease” in your minds and it is manifesting itself in to reality. This is something that you have created. All of these ailments that you experience are a result of your negative thoughts. It began with one symptom, then you kept on thinking that something is terribly wrong, which led to another, and another. The more you read and do research and try to a self-diagnosis, the more you are making yourself sick! The process repeats itself. Look it up. It’s called the laws of attraction (the Secret). What you think is what becomes reality because the mind is simply that powerful. You reap what you sow. You are all just hypochondriacs. This is what the capitalists and pharmaceutical drug companies of this country want us to believe. They still want there money when it comes down to it. Think more positively and feel better. Stop believing or even thinking that you maybe sick, and expect surprising results. The good news is…nothing is wrong with you! God bless you all! Love is also the key to everything good. Love, peace and blessings.

  68. To Monica:

    “You are all just hypochondriacs”

    I suppose all my positive cultures saying I had strep throat didn’t happen (mixed in with some negative ones so I’m not a carrier).

    I suppose my mono test that came out positive was a figment of my imagination. After first testing negative.

    I suppose recurring candidas/yeast growths in the mouth were the cause of hypochondria.

    But thanks for saying nothing wrong with me!!

    I guess you know more than my last throat culture that came back positive again for something!

    I’ll just think positive now and everything will be peachie.

    -Thanks for the wonderful advice!

  69. My illness came on very suddenly 3 years ago and I believe it was transmitted sexually (the result of a short lived affair). The first sign was a high fever followed by night sweats and a strange “tingling” feeling on the roof of my mouth. Shortly after that, I began to experience a variety of other symptoms including extreme fatigue, muscle pain, and swollen lymph nodes. 3 weeks to a month later the symptoms persisted and the tingling feeling developed into a dry, sore throat which I could literally feel spreading to the back of my throat and then the dryness started spreading through my nasal passages, drying them out. A month later I developed angular cheilitis (red flakey skin at the corners of my mouth) which persisted for 2 to 3 months. The sore throat and extremely dry nose became chronic and I also began to experience inner ear pain and a swelling of the lymph nodes behind my ears and in my throat. On several occasions during this period I had “episodes” which consisted of the sudden onset of chills followed by a high fever and diarrhea which would last for a several days. 3 years later the fatigue has considerably decreased and most of the symptoms have run their course, however, I still deal with a sore throat and extremely dry nose on a daily basis regardless of the season, ear pain is also sporadic and accompanied by a decrease in my ability to hear.

    During this time, I made several trips to the hospital but no definitive findings were discovered through blood tests. Abnormalities included a low platelet count, IGg deviation, elevated white blood cell count (mild), and slightly high liver values (T-bil). The ENT gave me a cream for the angular cheilitis which eventually worked although it took time, I also received ear drops and a very mind steroid spray for my nose but these were ineffective. A later round of antibiotics also proved ineffective. I kept a rather detailed account of all of the symptoms I experienced and have given a one page summary (along with a time-line) to my all of the doctors I have seen over the years… they don’t seem very interested in this… they also have not found any condition that can by definitively diagnosed by standard testing so they have not been particularly cooperative. I have fallen into a pattern of going to the hospital, being told there is nothing clearly wrong with me according to the tests, giving up and resigning myself to live with the symptoms and then reaching a breaking point months later which sends me back to the hospital to go through the same thing again.

    Although I have not suffered debilitating mood swings, my disposition has changed considerably and I also find myself staying at home much more than I used to. This has also affected my professional life. I work as a lecturer and the sore throat makes it difficult to get through a 4-5 hour block of classes. It has also affected my social life because I find myself “conserving” my voice, as not to trigger more severe symptoms. So although it is safe to say that I have experienced depression it is not at all clear that it is produced “organically” or as a reaction to a decrease in QOL.

    Finally, and most significantly, I’ve seen this passed on from person to person. My wife has experienced many of the same symptoms that I have over the years and this began for both of us with a high fever and a case of night sweats. Like me, most of the symptoms have subsided but the dry/ stuffy nose has remained and signs of fatigue are still evident. In addition, both of us continue to have a host of “oral” problems including tooth decay, cavities, swollen gums, and receding gum-lines. Many people around me have also complained about, or continue to complain about similar symptoms as well, making me suspicious that they may have “contracted” the same disease.

    I’m not completely convinced that it is a virus, although this is a distinct possibility. Like others, I’ve done considerable research but have not found anything clearly fitting all of my symptoms and that can be easily tested for. Possibilities include: mycoplasma, candida, T-lymphotrophic virus, enterovirus, Epstein-bar, or some other form of systemic fungus or bacterial infection.

    Here are a few links which describe similar symptoms:

    http://en.wikipedia.org/wiki/Human_T-lymphotropic_virus

    http://www.medhelp.org/forums/FamilyPractice/messages/106.html

    http://www.drmirkin.com/morehealth/G220.htm

    REPLY: Thank you very much for your comment. There are a number of suggestions I would like to make, and some questions I would like to ask, if I may. If possible, please submit another comment and put your email address in the appropriate field (it will not show up on this blog, and will remain completely private). A bit of team work may help get some answers. I closely looked at the HTLV virus as a possible candidate myself, but ruled it out for several reasons, which I can explain (though I am not a health professional). Your observation that ” …people around me have complained about similar symptoms as well, which makes me suspicious they may have contracted the same disease… ” is interesting, and you are probably correct; I have noticed such similar complaints in my social connections too, often with identical symptoms. – Hip

  70. If anyone else has done research into this topic and has links they would like to share it would be greatly appreciated.

  71. (Follow-up to earlier post of April 27, 2008)

    NOTE: I did not take the referral and see an ENT. Instead, after much research, got an appointment at a new doc’s office. Met with a nurse practitioner there who REALLY listened! That in itself was a sweet relief!

    Just to report: Epstein Barr Virus test was positive at 4.27 (anything over 1.0 is positive for reactivation). She was very sure about the EBV (on examination, prior to bloodwork) due to the raw throat, fatigue, etc. BUT, she also said some of what I am going through is due to (gasp!) menopause. At any rate, she is a great believer in Chinese Herbs and got me started on Dong Quai. If anything positive comes out of all this, it is going to be a ways down the road and there is nothing I can to do accelerate the process except ‘eat healthy and sleep/rest as much as possible’.

    I have no conclusions at this point, purpose of this post is just to provide update.

    Thanks and be well,

    Cathy

  72. Great Research Steven;

    Thanks for posting it’s appreciated…

    Read my story on April 13th for background on my case if you like.

    My 10 month chronic sore throat & myriad of other symptons began days after a new sexual encounter.

    I too thought I contracted an STD, but all STD tests taken a few months later were negative.

    I had the red spots and blotchy flaky skin around the corners of my mouth as well that persisted for about two months.

    Fortunatly that’s gone.

    I also have some small red blistery spots near my eyes, usually one on each side, that look like acne but are most definitlely not. Been getting those for three months, still do. Never had that before in my life. (Doctor said they were allergies?)

    Fortunately, I don’t believe I’ve passed this on to anyone.

    Although, I live & work alone so my contact with others is severely limited. I try not to get too close to friends & family & breath in their face in case my condition is contagious.

    Also, aside from the normal depression that anyone would have with 10 months of being sick, fortunately I’ve suffered no noticeable depression or deteriorating mental conditions.

    I do feel some minor bouts of dizziness, not sure if that’s related though.

    I’m nearly certain mine is related to EBV as I tested + for mono last Nov., after first testing negative in Oct.

    Either that or the systemic candidiasis/fungus or bacterial infection you referenced as I just read your (posted by Steven) links.

    As I have tested + twice now for candidas in the mouth, amongst the 8 or so throat cultures I’ve had.

    Other symptons include a persistent thin layering of very sticky/thick mucous lining the roof of the mouth, and back of the tongue, and nasal passages, and every morning for a few minutes I produce yellowish/brown substances from my nasal passages. (never had these issues in my life)

    My dentist noted that I had lots of saliva/bacteria in my mouth and urged me to use some type of antibacterial mouthwash.

    Of course I still have the sore throat 10 months later, fatigue but not as bad as before. Frequent headaches, high blood pressure, and in recent months a recurring skin rash on my left shin.

    Here’s a sympton I haven’t read here:

    It’s strange but on the top of my head I get this extrememe sensation that suddently overcomes me and feels like it’s coming from deep within, it burns, and tingles, and I must scractch it immeditaely. (no it’s not just itchy scalp )

    Again, this sensation never happened before last year.

    I have no idea what that is about, just thought I’d throw it out there.

    All this again is coming from a previous healthy male in his 30′s who was participating in highly competitive sports (physical) leagues.

    I went from exercising almost daily to not once in 10 months. Fortunately my weight has been stable through all this as I’ve toned done my caloric intake to compenstate for lack of exercise.

    To date I’ve done little research as I didn’t want to let my mind wander while roaming the net, but I will research systemic fungus & chronic EBV and see what I can find.

    Hopefully all these symptons will run their course in a year or two, and this nightmare will be over.

  73. The cracked dryness at the corners of the mouth was also a symptom that an ex had. Another is that my back will break out along my spine. My skin is very clear, usually. I’ve seen doctors who have said it may be a weird presentation of a virus. I think EBV, since it is all strains of the herpes virus are stored in your spine, and it is a form of herpes. Anyone else experience this symptom? Also, are you all anxious people? I am, and I’m thinking this may keep my immune system on edge and unable to kick the virus. My symptoms are far worse when I’m sleep deprived, sick, anxious, or depressed.

  74. Lindsay – To answer your question I guess I would have to admit that yes, I generally experience anxiety to one level or another – moreso than it seems most people do.

    I spoke with my nurse practitioner again today. The HSV-1 came back positive (no news to me – I’ve known about that for about 30 years). HSV-2 was negative. Duh. Anyway, the way she talks about the EBV and the HSV-1, I guess it IS all related, I just can’t get a good grasp on it all. She recommends that I avoid antibiotics unless absolutely necessary (I thought that was the rule anyway, eh?). Said that my EBV level shows I am “past acute and into convalescent” so I am recovering. I have to agree with that – my throat is still inflammed, but not anything like it was a few weeks back. I did notice one interesting thing: I took 2 Benedryl last night to knock myself out. Worked great as I slept through the whole night. Here is the interesting thing – Got up this morning and walked across the floor with very little stiffness/soreness. Incredible. Doc says sleep is important for recovery and I’m thinking she might be right.

    I did not want to steer this string off-course though. Just because my test results seem to point to EBV, I realize that what many people on this board are going through, is something that has not been named. I want to continue to read and learn. I do not presume to know anything at this point :)

    Best regards to all,

    Cathy

  75. HI…This article describes my son almost 19 to the “T”….. he has had sore throats his whole life…I found this in my search because his throat is covered and I mean clustered with blisters and he doesn’t even feel them…. I do know that he has battled yeast severly and It’s a suggestion that maybe it wasn’t the virus…but maybe that the continual use of antibiotics that possibly have an overload of yeast in your body as does my son…bu then that wouldn’t explain the continued sore throats??….If you have any advise for my son…let me know…Thanks…Nancy T.

  76. Hi,

    This is a real apt description of my chronic sore throat that has plagued me for ages!

    I’m beginning to get worried.

    What comes after the later stage symptoms..? And what are the cures for it? Please drop me an email if you have a reply to these questions, thanks!

    You’re right in its diagnosis – Its not only a physical illness, but also an emotional and mental one, and also affects your quality of life.

  77. Hi from Finland

    Last May i had bad throat infection which i felt was first worse in other side and then spreat steadily. I had weird “blisters”, swallen, painfull and soar throat. There wasn’t anything in the cultivation so doctor said it was viral.

    I didn’t rest physically enough so the infection went somehow to my ear (same side that where the throuat infection started). My ear leaked and ear canal swol so bad i had to go many time to rince it in the main hospital. Same time i suffered diarreare symptoms.

    For 2 months the throat was little red all the time as the infection started worsen again, now from other side of my throat, and same leaking happened with the ear just like before.

    My throat did not heal totally and now year after, the bubbles are back! Week before the throat symptoms i was wondering why i felt fatigue and like my legs would not have power at all. Also i felt cold shivers.

  78. I am blown away by the way you described word for word basically what I have been through this past year. It all began last February. I had some testing done on my thyroid due to some issues in the past (cyst). All checked out okay. Then, next thing you know, I was so ill. I began getting chilled, chronic stomache problems, soar throat, ear infections, dizziness. I saw doc after doc. I was beginging to feel like the one doc I saw was right, that I was going crazy!

    I had odd parethesis, weakness, diagnosed with CFS… did not accept that. I knew I had something far worse. Test after test came up negative.

    I was left with symptoms still, over a year and thre mo. later… have severe wrinkling of the skin, have chronic ear infections, often dizziness, weakness- in the legs. Suseptible to illness all the time. In fact, not only I but, my three kids, as well. Hubby had a few symptoms but not as severe. My mother had this first, I believe but it was put off on thinking it was due to her recent operation at that time. Our symptoms, so similar, as what yo have described. Even the mental aspects… the depression, even my son (11) had this type of ditrubance in thinking patterns and the like.

    I am gravely concerned that a diagnosis is found. I hope that this will not continue to inhibit our quality of life yet, it seems it’s still present. Just when I hope it isn’t I get weak and anxious and tired, even have had heart related issues, palpitations, if you will. No doc could see any signs there of any issues with me or my son. Not all of us effected in the same way- my 11 year old and I most severe, my 13 year old and 6 year old, not as severe but equally concerning. I had signs of EPV in my system but they said it was in the past. I had cocksackie myself at age 19, when my son did. ODD. So much of what you have described is precisely what I’ve dealt with.

    If any further info is dicovered regarding this please do not hesitate to notify me. jtownley77@yahoo.com

    THANK YOU…

    and good luck to all of those out there suffering. Let’s pray the medical community does recognize and remedy this!

  79. I’m crying uncontrollably right now. I have almost ALL of these symptoms, even the less-encountered ones you mentioned. I started feeling this way on November 16, 2007 (though I also had a series of unexplained colds in the earlier part of the year). My doctor can’t find any explanation and says I’m experiencing GAD and need to take an SSRI. I get winded when I climb stairs (I’ve been a healthy jogger for years), I have a white tongue coating (neg. for candidiasis). He found I had Hepatitis A in Jan but that’s probably coincidental. I had a pulmonary test and it came back as slightly abnormal, not enough, according to my doc, for a bronchodilator. He wants me to get an HIV test but I’m dreading it, and the inevitable wait and the call into the office. I’m a hetero white male and have had only 1 risk exposure since my last HIV test, a 1-time unprotected with my very trustworthy, healthy girlfriend. So I really doubt it’s HIV. My white cell count in Feb was 3.3 and the doc was visibly scared…which didn’t help me. Though, he seems to have forgotten that Hep would easily cause such a low reading. Going for another test tomorrow to see if it’s back to normal. Let’s see…I even think I have this fine parchment wrinkle thing. I’ve had 3 major bouts of dry cough since Nov, none of which responded to antibiotics. I have major post nasal drip (though I’ve had it all my life, admittedly) and my throat isn’t sore, but has that icky allergy-like feeling. Ah…the gastro symptoms. I thought this was all from the Hep, but who knows. From Feb-Apr I had massive intestinal gas (flatulence) that never stopped. My liver area still feels inflamed but all tests were negative. Anxiety is also something I’ve had most of my life, but it’s worse now. Doc even did the thyroid test and came back with nothing. God help me!!!!!!!!!! Is this really possibly a new viral epidemic?

  80. Hi Alex,

    Welcome to the board and thanks for posting.

    I’m sorry to hear about your symptoms, I know from experience that it’s not fun and that it can be a bit scary. When my symptoms first appeared, I convinced myself that what I was experiencing was AIDS and it took a few weeks to get the courage up to go and get tested. I was incredibly relieved when the results came back negative, but at the same time, I was still emotionally unbalanced and confused because after months of being literally crippled by this disease no clear name could be put to what I had and all of the tests came back negative or inconclusive. In a perverse way I think part of me would have been relieved if the doctors had found some terrible, life threatening disease, at least then I would have known what I was up against. As I wrote in my previous post however, 3 years later I’m still here and most of my symptoms have run their course and the ones that remain are bearable. Today I woke up and went for a 8k run and it felt great. It’s been a long recovery and very incremental but I know the worst is over. Long story short – don’t panic – you will get better, it just requires lots of time, a number of healthy lifestyle changes, and maybe a bit of luck. Hang in there.

    Having said that, I know that I am still sick and I’m still trying to piece together what exactly this bug is. The white tongue seems to be a common denominator and white patches or a coating in the throat are also common complaints. At first I was convinced that this was Candida but my tests came back negative as it seems many people experiencing these symptoms have reported. I have not experienced the skin condition that others have complained of but I have had experienced a number of rashes and I’m very aware of some kind of sticky bio-film that that is extremely tenacious and I believe it to be the same thing that is clinging to the inside of my mouth causing the sore throat, dental problems, dry cough, and the extremely dry nasal passages as well.

    From all the reports I’ve read from people suffering similar symptoms, antibiotics and antifungals don’t appear to be effective (at least not in the long term) and could possibly exacerbate the symptoms. For me the only thing that seemed to have any effect whatsoever were anti-inflamatoy drugs, although I can’t say with confidence that the effects were lasting. As far as lifestyle changes are concerned, avoiding sugar and increasing minerals and salts seemed to help a bit. Getting enough sleep every night is crucial. Not stressing and trying to take a detached approach to researching this disease also helped me to keep my sanity and maintain an emotional balance. Having had Hep A you also need to be careful to avoid alcohol but that goes without saying. I and my wife both got it years ago when we were traveling in South East Asia and It took me about half a year to get over it. I imagine it still has a slight bearing on my health today. Exercise and hygiene are also extremely important in my view. Always wash your hands, brush/ floss/ mouthwash 3 times a day, get outside and go hiking or running if possible, don’t smoke and watch your weight, take supplements but don’t overdo it, drink warm tea, etc, etc, etc… These are some of the things I tried to do and I think that in the aggregate and over time they were effective.

    Chin up and all the best with your recovery.

    Steven

  81. To Alex: Hang in there , My and , wifes, symptoms are very simmilar to Stevens above. It started on 9/22/07 with a low grade fever/flu type symptioms. On 10/22/07 started to feel better then wham, post nasil drip -BAD with hoarse, sore throat because of drainage but not sure. Infection IMO caused granuloma on right side of throat ,. The agent then migrated up near my carotid or ascending pharyngeal artery that resulted in a terrible headache on the right side of my head just in front of my rt. ear for 2 days in 02/08, there was also minor bleeding from my rt. sinus after the headache for about a week caused by the agent IMO. , then dry sinuses both sides, now post nasil drip has almost stopped but mild sore throat still flares up at 5PM or so or whenever there is stress, even mild stress, but I feel I am s l o w l y getting better , my wife is still worse than me and she had many weeks of antibiotics, her symptoms are a little different , she has chronic cough and no sore throat but post nasil drip. Also does anyone else have a bump that developed in the area of their occipital lymph node on the rt. side of their skull approx. 1.5″ behind their ear durring the infection? PS. I was very scared and worried a couple of months ago that this was never going away, I am 50+ and made it through (I think) hope there’s no complications down the road. I think my wife will be ok to. I think the CDC should check into this , there are most likely not enough of us that are sick yet to spend the money to invest the time. Best of luck everyone.

  82. I’d have to say this blog is very interesting. The initial symptoms presented are almost textbook symptoms to what I have been also experiencing. Within the last year I have experienced a rapid exacerbation of those symptoms. I tried “self help” (herbal, organic, body cleansing, detoxification, fasting, protein diets, etc.) I’d have to say all of those things made me “feel” better at the time, but as soon as I stopped them my symptoms returned. Honestly people you HAVE TO look at what you are putting into and on your body. LOOK at ALL of the preserviates, additives, dyes, chemical, etc. that are in the products we either eat or put on our bodies (shampoo, lotions, makeup, etc.) We drink, cook, eat on, live in a chemically induced world. Plastics are leaking into our water systems/bottled drinks and foods. We cook with “nonstick” and aluminum pots/pans that get on our food. GOD knows whats in the food we ingest in resturants!!! Look at all the meats we buy at grocery??? Were does it comes from, what kind of “virus” (in all meats!)are we eating? Taking antibiotics/antiviral may “temporairily” help our symptoms, but if you keep ingesting the same things over and over….eventually they will not work anymore. My suggesstions….you will become what you eat basically….look at the labels on food products, look where it comes from (don’t buy imported food), grow as much of it (and freeze it) as you can. Drink/eat out of glass/ceramics. Distill your drinking water (ever try it???, WOW what a difference….)Get plenty of sleep, take deep breaths, don’t smoke, don’t drink, excersize (that’s right, I said exersize) relax your not dead yet! Have a positive attitude ( think about things that make you smile). And if there is a nasty virus/bug out there….it’s not the first one we’ve ever come across and we will all be okay….

    Hang in there and take care of yourself….don’t just “take a pill” to feel better, take it upon yourself to feel better….

  83. i’ve developed a sore throat, but have only had it a couple of weeks, and stumbled on this site. sure hope that mine is not going to be a chronic problem, like a lot of you guys? but, a lot of the symptoms that some of you have, i’ve had for years anyway, and, for me, it was a result of taking an antibiotic from the fluoroquinolone family, (for a supposed UTI) which destroys the mDNA of bacteria, but, unfortunately destroys the mDNA of mammalian cells (ie destroys collagen), and the fluoro component binds to the receptors of thyroid, which means that you’re body runs low on that. check out this site, if you think it may have relevance — http://www.fqresearch.org/

    anyway, i wish all of you the best, and will keep hoping for returned health for all of us? genevieve.

  84. Hallo,

    My nightmare started almost two years ago. After sexual intercourse I started to have strange symptoms: body temp raised to 37,5 at least (it is two years now that my body temp is rarely below 37,3 degrees), I had unbelievable sweats during night and day – I was completely wet, I had to change my clothes few times a day, my pyjama few times a night. I got white cover on my tongue – candida albicans was diagnosed. I got sore throat – I couldn’t heal it by anything, no medicines no sprays worked and it lasted for almost half a year and is still persist to some extend. I got problems with my eyes – can see lot of annoying small objects rolling ahead of my eyes, could not stand day light. I got kind of dementia which caused me to forgot things like my car’s whereabouts, PINs to my bank cards etc. I am tired, exchusted and sleepy all the time even after 10 hours of sleep. My life became a nightmare.

    At the beginning I was sure it is HIV virus but the medical tests didn’t prove it. The last HIV antibody test I made after two years after that unlucky intercourse. It came out negative as several tests before.

    I was tested for all kind of common diseases for several time (like HIV, hepatitis a,b,c,d; EBV, CMV, Chlamydia, full STD’s panel, and many many others). I haven’t found anything.

    I don’t know where to go what to do, where could I seek any help.

    I wish you all many health.

    Edward

  85. hi,

    I think I’m affected from this virus, because most of the symptoms, I’m just suffering it right now. And I’m just 16 year old.

    -_-

    I need someone to answer my question, please???

    is there a time that you’re throat had a yellowish thing???

    it’s like a little beads stocked in throat…

  86. This is NOT a VIRUS.

    This is bacterial infection.

    I’m investigating this for 3 years already.

    A lot of people with this shit respond to antibiotic therapy(with some antibiotic groups only; beta-lactams, metronidazoles, early tetracyclines, antifungal grugs and some others -will not work!)

  87. Dear Author of this article!

    I think that the problem might be resolved. I am suffering from the same disease for more than 4 years. I know at least 40 people in Russia who have this disease and exactly the same symptoms. Several people found Acid fast bacteria in the samples, then they culture – and nothing grew. This makes me think that this is not THE MOOD VIRUS as you name it here, but some type of disease related to MYCOBACTERIA LEPRA. If you know, this is what causes leprosy/ hansen disease. It can develop for a long time up to 25-50 years. Nerve system is damaged, skin is damaged, strange spots, scars, rashes appear with time, skin is shiny, and the most interesting is – Chloramphenicol, erythromicin, fansidar, rimphapicin and other antibiotics that Leprosy is sensitive to – WORK. But obviously they needed to be taken for a long period of time. It’s not a secret anymore that Leprosy symptoms changed with the time and now even specialists sometimes cannot really say for sure by the symptoms if you really have Leprosy or you don’t

  88. Dashullya is right,

    but we don’t know for sure now.

    This could be pathogen that is not growing on the laboratory media(M.Lepra), or pathogen what requires some special laboratory media and conditions of incubation(for ex. lipophilic corynebacteria).

    In any way the causeative agent is an acid-fast bacteria.

    This we can say for sure. And it could founded only by acid-fast(Ziel-Nielsen) staining in good* and right* tissue samples.

  89. Dashullya/B.O.R.I.S.-

    Interesting blogs you wrote. Does anyone know where to go to get tested for “unusual diseases”? Here in Iowa the closest place I can think of would be Iowa City or Mayo Clinic in Rocester, IL.

    If this is “leprosy” or a distant form of it, why are MD’s not testing for this? Lots of people all over are presenting with the same or simular clinical symptoms. How about we start our own clinic,centralize it. I’m an RN (exposed to alot of crap, you could say). I’ll volunteer to work at this clinic,take vitials, draw blood, do assesment, etc. If we could get someone with $$$ to fund it, MD to order tests,etc. Anyone game???

    Anywho, I’m going to ENT next week for him to probably say “I’m Crazy. or you just need to get your tonsils cut out”.

    I have had pus producing tonsils for years (I’m 35)….recently I’ve noticed some skin issues. Follicular conjunctivitis in bilateral eyes. Put on steroid eye drops, temporarily helped but still having eye irritation. Skin eruptions along jaw line, red raised skin lesion on right lower leg, lower back discomfort. Swollen lymph glands along lateral neck. Headaches, nausea in am ( no I’m not pregnant, h/o hyster). Fatigue starting toward mid day (hey maybe I’m just getting older?) Anyone find the fountain of yougth yet? Okay now I’m just rambling….are we all a bunch of hypocondriacts or what??

    Try to have a good day….

  90. Hi Everyone

    Did you see this recent news item: 5 babies in the US have died from a Coxsackievirus B1 (CVB1) enterovirus. Coxsackievirus B1 does not usually cause serious infections; so there is speculation that this may be a new strain (serotype) of coxsackievirus B1.

    The new article is here: Mild Virus Causes 5 Baby Deaths.

    What’s more, check out the picture (the full size one) in this news article: the baby’s skin has exactly the same fine, parchment-like skin wrinkles as the hand picture shown above on this page (assuming this is an actual picture of one of the babies).

    Could the chronic sore throat virus be this speculated new strain of coxsackie B1?

  91. I have almost every symptom listed except for the “Later onset symptoms”. I am so tired of feeling sick; a sore throat, sinus drainage, worn down feeling, etc… as the list goes on and on. I have been dealing with this pretty continually for about 4 years now. I will get a short break now & then but it always comes back. My Dad suggested that I take Garlic pills and after trying them I felt quite a bit better already by the next day. I’ve been taking them for about 1 1/2 weeks now and they have helped tremendously with the symptoms I mentioned above and also with my energy level because when you are feeling good you tend to have more energy. I notice that if I take less then what is recommended then the next day my sore throat is back. I took 4 tablets of 500 mg. per day for the 1st week then I purchased 50 mg. by mistake so now I take about 500 mg. total or I’d have to take 40 a day just to reach 2,000 mg. so be sure to look for a brand with a larger mg. per tablet. I purchased the odorless garlic in softgels in the NOW brand. Most brands are odorless but I would check to be sure that is the kind you buy. I think Walmart carries the NOW brand (orange label) but I purchased them from the Natural Food Store. I have not been taking them long enough to find out what they will all help with or if my symptoms that disappeared will come back all I know is that at this point it has helped tremedously and I would recommend anyone trying them. They are inexpensive and if it helps at all it is worth it. Hope this helps!!

  92. Dear Kim,

    You are not crazy and you are not getting older ( of course we all are, but it has nothing to do with the disease we are talking about right here). Boris and I both trying to study this disease. I am from Russia, Boris from Ukraine. I live in USA in Mississippi right now. About 3 years ago I bought a professional microscope, stains, books and started my research. I know I found acid fast bacterias in my and my husband’s samples, but since I am not a professional I couldn’t identify them. I also found that the mucous we are coughing out has enormous amount of leukocytes which is speaking about inflammation. I would love to help to get the answer – WHAT IS IT? And I think that you have a really good idea about trying to get doctors, scientists biologists involved in the research. I just don’t know how difficult it may be to get funded for this project.Besides, I am pretty sure that this disease CAN BE CURED and people don’t have to suffer and mentally degradate as it happens right now. First of all I suggest that all people who are interested in helping, in research and in all other aspects connected to this problem, get each other emails and then we can discuss what we all can do. As I said it would be really great if we could get the interest of scientists and doctors, but meanwhile we can at least think what we can do. One head is good, several – better. Speaking about Mayo clinic – I am going to Mayo in Florida in about a month. I hope that there are high class specialists that will at least listen to me and get serious tests done. Also speaking about tonsillitis – I do have it also and the more serve the disease is the more serve tonsillitis I have. Besides, I started thinking about connection with it much earlier, since every person I know with this disease has TONSILLITIS. It may be coincident, but may be not. I have a friend who is a high class neuropathology specialist in Mayo clinic , he thinks that the reason what we all suffering from are some kind of toxins, but he can not say what is it in particular. There should be many tests done, one after another to illuminate possible causes. I would not name this a VIRUS only on the basis of somebody’s words that the doctors have done some culture and didn’t find anything. You , as a professional will understand me that there are about 20-30 agars of different types, different bacteria are growing on different media , some only on selective, some need one temperature for growing some need other temperature, some need 2 weeks some up to 3 months. If talking about fungus – they need different growing media, different staining technics and even if this is a virus it also can be cultured or at least looked under the bigger magnification ( since viruses are much smaller then bacteria). I wish there was some kind of test that can identify what kind of toxin is poisoning the body. But as you probably know there are different groups of toxins for bacterias, fungus, viruses, parasites and most of the doctors just refuse to do a research on toxins, saying it’s too expensive. For all people that are reading this post I would recommend , if they go to the specialists and ask for tests – do not mention fatique, DO NOT mention agression, brain fog. I will tell you why – there are only few doctors that will continue looking for what is really wrong with you after that. Because they are thinking and because they are smart. Most of them will send you to a psychiatrist, because they hear a familiar sound of mental symptoms and you will not prove that you have physical disease to them. Let them concentrate on other symptoms like SKIN PROBLEM, Stomach problems, conjunctivitis, gynecological discharge, coughing etc. Something they need to test to find a real cause, not just the syndrome.

  93. Hi Dashullya,

    Thanks for taking the time to post on the board.

    I’ve been dealing with this for the past 3 years and I have to agree that what I’m suffering from (can’t speak for everyone) sounds like what you describe in your post. Early on I experienced symptoms that seemed to be viral in origin (night sweats, shivers, fever, diarrhea, fatigue, joint pain, etc…), lately however, everything that I have observed leads me to believe that if there was a viral infection, it has passed. All of the remaining symptoms that I (and my wife) are experiencing now seem to be very localized and don’t fit the profile of a virus. For quite some time I’ve suspected some kind of systemic bacterial/ fungal infection as the cause of what I and my wife are suffering from and have been leaning towards some kind of mycobacterium/ ureaplasma/ or pneumoniae – and although less likely – maybe a fungus like Candida or Trichosporon.

    The information you mention about the Leukocytes etc.,makes sense to me. As I mentioned in a previous post, the only medication that I have received so far that seemed to have any effect at all was a class of anti-inflamatory drugs. In addition, although I wouldn’t call what I have “tonsillitis”, I do have a greyish-white coating centered mainly on the roof of my mouth and the back of my throat that I didn’t have before this disease and which is causing my chronic sore throat (my tonsils, gums, etc have also atrophied to some degree). Also, after reading Boris’s post I did a search on M. Leprae and found that it often affects the nasal mucosa, causing symptoms similar to those my wife and I continue to endure. Finally, I live in an Asian country where TB and M Leprae were at one time widespread in society and may be reemerging as resistant strains appear.

    So I tend to agree that,

    1) This is probably a bacteria.

    2) It can be cured if properly identified and treated

    3) It is difficult to culture in the lab and will be missed (or misdiagnosed) by 95% of doctors

    4) It is best to focus on concrete symptoms that cannot be lumped in with other syndromes (CFS for example) when talking to your doctor, and to stress that this is affecting not just you but also other family members who have the exact same symptoms

    5) It is important to share information on concrete medical findings that we have been diagnosed with through testing

    As I mentioned in an earlier post, there were only a few abnormalities that showed up in the extensive testing that I underwent. These were:

    1) Low platelet count

    2) IgG deficiency

    3) Slightly high T-bilirubin (Had Hep A years ago… might be related)

    ( *these were not anomalies, they were confirmed in separate test over the course of several years )

    Has anyone else been diagnosed with these or other conditions based on blood or other testing? I would appreciate any info you are able to share.

    Thanks again Dahullya and Boris, I think you’re headed in the right direction. Lets keep in touch.

    Steven

  94. Dear Steven,

    Please stay in touch so we can share the information. Sometimes I hear news from Russian/Ukraine side about effective medicines or trials, new symptoms development, new tests that come positive for people with our symptoms. Please write me directly at dashamusics at hotmail. Or everybody who has interesting info about the subject is welcome to write. If you write me a letter, I would like to share some other interesting things I discovered, it may help. Now, my insurance doesn’t cover specialists in Mayo, unfortunately, but covers Cleveland clinic, so I will try to get inthere and will stay in touch. I think that all fungus, parasites need to be illuminated first of all. It looks like the main reason of suffering is serve allergy, edemas, toxins. This destroys the whole organizm. Fungus and parisites can live in the body for a long time. When the doctors do all tests for those – micobacterium of all types, actinomycetes, nocardioses, blastomycosis, histoplasmosis should be illuminated and then of course all protozoa and protozoa/fungus types parasites.

  95. I have many of these symptoms not all of them. It began for me about five years ago after staying in a hotel room in Gatlanburg TN. I got sick and my significant other became ill the day after staying in the hotel. We did eat seafood the night before, we had shrimp.

    we woke up the next day and both had horrible sore throats and fever. he got pennicillian and I got another antibiotic since i am allergic. we were hastly diagnosed with strep, but at the time strep was going around and the clinic was full of people with it. they were giving out masks to people as they came in.

    after a week I didnt get any better at all, the boyfriend did. I ended up going back to another clinic and they kept me there for five hours, I had high fever, general fatigue. sore throat, they said I didnt have a viral infection that it was bacterial in nature. They gave me Doxyclycine, after the first two days I felt super better and after a week thought I was completly rid of it, but after about ten days it came back full force, I had pain in my neck muscles, shoulders and between my shoulder blades, I was so tired that I napped about five times a day. I couldnt eat anything without it causing me stomach stress. I had either runny green or no bowel movements whatsoever.

    this virus has persisted in my for five years now. I have sore throat all the time. fatigue, strange reactions when I eat, tingling between shoulder blades, stomach swelling to capacity and painful. chronic gas, I was diagnosed with horrible GERD, reflux diease after about a year and a half, although I had never had it before. I tested positive for H Pylor, did the treetment for it, then things got worse. especially the gastro problems.

    I used to be outgoing, now I hate being around anyone, I am overwhealmed eaisly by the simplest tasks. I am just tired all the time. I have frequent urnitation and thirst. I get fine pimples on my back and shoulder blades that even when they have dried up they leave scars, Ive never had this before and im 39 yrs old. I havd had Nissan surgery for reflux yet still get refulx and cant eat anything spicy or fried, I can usually only eat wheat cereals with low sugar, banana and rice milk, brown rice and baked fish with rosemary. If I eat ANYTHING other then that, my stomach goes thru even more stress, keeping me awake half the night.

    I have slightly high white blood cell count, for years. hypoglycemia, (this is fairly new symptom) chronic fatigue, trouble concentrating, and complete change in who I used to be. I am very antisocial perferring to stay home most all of the time, due to my having to eat six to eight small meals of the same old stuff all the time.

    I do not belive that my only problem is reflux which is what the docotors say, I have had the sugeries I dont eat anything at all ever to cause reflux, and I take protonix and tums contstantly.

    I do know when first got this diease, my skin would be very very dry, around my fingers would crack and take months to heal.

    there is so many other little symptoms that I just cant type them all. I do hope the find a cure.

  96. Bonjour. Il y a 3 mois maintenant que j’ai mal à la gorge. J’ai dans le passé eu une extinction de voix qui à durée pres de 6 mois. Alors je me disais que ce devait etre les séquelles. Cependant, lorsque j’ai lus votre site, je suis tombé par terre.

    1. mes articulations me font mal a mourrir. J’ai 2 doigt qui ne plis presque plus et tout craque. 2. Je vis des périodes de dépression intense sans raison. ( tout va bien dans ma vie ) 4. Lorsque je me blesse, je cicatrise beaucoup moins bien: les cicatrices restent apparentes et d’une couleur vive! 5. Je suis fatigué, même apres des nuits de sommeil régulière. 6. J’ai des feux sauvages à répétition. 7.la peau me démange sans cesse. 8. je perds mes cheveux beaucoup plus qu’avant. 9. Je suis incqapable de manger des aliments car j’ai la diarrée instantanément. 10. Je fais des gingivites à répétition. 11.Perte de libido. 12.etc…..

    Aidez-moi!!!! Je en sais plus quoi faire!

    If you have any suggestion of what kind of treatment i could take for a whil…let me know!!

    Best regards and best chances to all of us!

    ROUGH TRANSLATION:

    For 3 months I have had a throat. I had in the past lost my voice for nearly 6 months. So I thought that this was the aftermath. However, when I read your site, I fell to the ground.

    1. My joints hurt badly. I have two fingers that are creaky.

    2. I have periods of intense depression without any reason. (All is well in my life)

    4. When I have cuts or wounds, I heal much less: the scars are still apparent.

    5. I am always tired, even after nights of good sleep.

    6. I have repeated herpes cold sore flare ups on the lips.

    7. My skin itches constantly.

    8. I am losing much more hair than before.

    9. I cannot eat food because I instantly get diarrhea.

    10. I have gingivitis.

    11. I have lost my libido.

    12. etc …..

  97. Hip, would be glad to help. We can talk in Skype and discuss the problem. Here is my answer to your thought about C vitamin and our disease relation. Thanks and have a blessed day

    #Recently, I read that some Lyme disease and CFS sufferers are using 3 grams of sea salt mixed with 3 grams of vitamin C in a glass of water, three times a day. I have not idea of why this works, but I have noticed a positive effect on mood and energy on trying it. And it’s very cheap and simple. I really recommend that you try this remedy; the effects are rapid.#

    Yes, Vitamin C helps a lot. BUT, I wouldn’t recommend anyone to take 3g every day. Why? When it’s taken everyday it gradually weakens immune system. Fist it’s boosting it and the more it’s boosted day by day – it gets weaker trying too hard. Then autoimmune disease can start. Think about it. I use 3g of C vitamin as an extra help, when I have bad attacks. I ve read a lot why C helps – the main thing is not that it boosts immune system, the main thing is vitamin C NEUTRALIZES TOXINS!!!

    You can read articles about that vitamin C in s doses over 2g- was discovered to help with bird flu neutralizing toxins( unfortunately too cheap to be used in medicine that is moneymaking business right now), you can read multiple articles that in old time vitamin C was used while treating diphtheria because doctors didn’t have antitoxin at that time.

    Let me tell you one more thing – many people with our disease saying now they tend to take more alcohol because it seems helping. First of all alcohol is a natural stress reliever and since our Nerve System is damaged it would help. Second and the most important thing – an alcohol neutralized just only one type of toxins I KNOW ABOUT – toxins of CORYNEBACTERIA ( Including diphtheria ) . I ve read a scientific article that the docs knew that and were trying to cure this disease in ancient times with alcohol. But 70 percent of people would die much earlier then the ones that were not treated with alcohol because alcohol would give a tremendously bad effect on people’s hearts. That;s why the treating with alcohol was stopped.

    So generally, these are the conclusions I made about vitamin C helping.

    Actually when I had flashes of fever and spams and sweats and FREEZING, first I was thinking – okay, it’s because I have high fever, but this prove me wrong – I would take tylenol – the fever went down but the condition wouldn’t change. As soon as I take 3g of vitamin C – everything stops – no spasms, no freezing, no nervousness.Why? whether it neutralizes toxins and they stop influencing the body or since vit C acting on blood vessels that might be connected to the blood circulation. Does the infection influence blood vessels? or brain or just nervous system? What is primary?

  98. Hallo,

    As I mentioned before, I am struggling with the same problem as all of you at this web site.

    My opinion is the same as Author’s of the web site, it is rather virus than bacteria or any thing else but I have heard about LEGIONNAIRES disease recently, which can cause similar symptoms. Would like to ask if anybody was checked for it?

    Thake Care,

    Edward

    REPLY: Thanks for that suggestion on Legionnaires disease (caused by the bacterium Legionella pneumophila). A quick bit of research uncovered that Legionella has many characteristics that do fit our pathogen profile: for example, Legionella has a fast incubation period of 2 – 10 days, and symptoms such as fatigue, fever, dry cough, muscles aches, headache, chest pains, shortness of breath, and later, it spread to the abdominal area and brain. However, Legionella is not contagious, whereas my chronic sore throat bug is definitely contagious via normal household and social contact. Also, legionella is easily killed by antibiotics, which I guess rules it out, since all the various antibiotics I had did not improve symptoms. Nevertheless, this is an excellent suggestion – Hip

  99. So to “test” for an organism: Viral, bacterial, microorganism, fungal, toxins, or vitamin deficency…

    Randam testing of:

    Blood -(multi-system/organ involvement)

    CSF (cerebral spinal fluid)-mood/coordination, neurological symptoms.

    Muscle biospy- connective tissue, “loose joints”, pain, fatigue.

    Tissue culture and sensitivity- consider areas of entrance into the body (eyes, nose, mouth(tonisils), any skin lesions, rectal/genital areas.)

    Testing first to “rule out” diseases such as ALS, MS, MD, Leginnaires, H-pyloric, influenza, Diptheria, MMR, tetnaus, STDs, etc.

    Think all we are vaccinated for:DTP, MMR, varcellia, hepatits, polio, Haemophilus influenzae B.

    All are a “weakened form” of those diseases, yes everyone is given a “standard dose” of vaccine, but not all of us are “standard”, we are all different sizes, shapes, immunities, genetic workup, etc.

    Could all these symptoms were having (and I’m sure there is more out there…) be from having these disease antibodies/antigens in our cells and possiblly genetic makeup?

    Could all those antibodies to “fight” the disease be starting to work against us and not for us?

    If so I can see why Vit C and NA+ help some symptoms…symply our immune systems are overwhelmed/overloaded. We are seeing more and more Autism in children, Amyotrophic Lateral Sclerosis, Parkinsons, and psyc disorders (depression, psycosis) then ever before.

    What to do about it??? Find your source…..

    Where do you mostly hurt????

    Look at your body, where do you think it is changing most rapidly???? (teeth, throat, joints, muscles, skin, lungs, stomach, Genitals, mental issues, etc???)

    Then go from there..

    Example:

    Sore throat:

    If your pain, symptoms (irritation, chronic infection, hoarseness, gums receding, bad breath, gastric reflux, gas, bloating, etc) started there.

    Get a tissue sample or swabbing of your mucosa from your NOSE, gums, eyes, tonsils, tongue, etc…have them r/o the basics such as MRSA, strep, staph Epi, candidia, the list goes on and on.

    I’m not saying it’s a bad thing to get vaccinated, I am saying we should just look at this “long-term” effects.

    What do you intelllegent people think about taking antivirals, antibiotics, and oral antifungals for 1 month???

    Thanks for reading…

  100. Boy, I can’t believe how many people are suffering similar things to myself. Having this pretty chronic sore throat led me to search for insight and I found this site. But my story is longer as I am 62 and once was very energetic and active, loving canoeing, camping, cycling, hiking, etc. Now I live on a meagre disability pension and haven’t worked for nine years. Poverty is a big issue for me now.

    I suffered from depression when younger and in 1974, had a terrible bout of something while travelling, after picking up a hitchhiker who told me he had had hepatitis, I think. We had noo physical contact. A week later I was jaundiced and then got a very high fever. I had vomiting and diarrhoea, delirium and then very extreme fatigue. After that I had very frequent chills and a recurrent rash that lasted for ten years off and on, whenever I was run down. I had to rsign from teaching, a year later and went on welfare. Fun!! $252 dollars a month to live on! I fasted frequently, gave up dairy and wheat and then went 21 years without a cold, got back to work and worked for almost 25 years after that . I had relationship and job stress and was trying to complete a very difficult course in medical herbalism from 1989 onwards, flying to and from England every year. In England in the early nineties, I had trouble with my right leg and was sick with something that a herbal remedy cleared up. A chiropractor helped my leg. But my partner cheated on me a second time and my mother had a near fatal heart attack . I kicked him out, flew to Texas to be with my mother who is now 92, having survived everyting from cancer to heart failure to a gangrenous gall bladder cyst. Then I had to increase my hours of work to pay the bills on the house, missed the final exam in my course which I had nearly completed successfully. Over the next two years, I started having spurts of energy followed by crashes and fatigue and tears. I had powerful energy surges that made me scream in my car. I went on short term disbaility and returned to part-timer work, but couldn’t cope. I went on long term disability and this condition progressed to having severe symptoms after minimal activity: inability to stay awake, profound fatigue, chills followed by great heat in the middle of the night, shortness of breath, pounding heart, incontinence, recurrent sore throat that turns to respiratory infection if I continue being active, that prickly feeling all over in the middle of the night, along with the shortness of breath, like panic–I have the digestive symptoms of flatulence and burping, now GERD and burning in the middle of my chest when I eat. I have the dry wrinkly skin thing and hair loss which is really annoying. I have recurrent bladder infections which is a condition helped most by taking acidophilus every morning and eating little sugar. I take echinacea and cat’s claw and echoshelle( a herbal tincture containing echinacea, elecampane and osha root which is anti-viral). It helps somewhat if I take it regularly. I get something called ADP from my naturopathic physician when I have a full blown acute respiratory infection. It is concentrated oil of oregano in tablet form and works great. I have anxiety, depression and irritability and don’t even feel in my body. I feel depersonalized and two psychics told me I was having a Kundalini expansion and the energy was being blocked because of past trauma and/or toxicity. I have no way of knowing whether this is true but puzzle all the time about how much of this is spiritual, how much emotional and how much physical. Anti-depressants make me feel very agitated and I hate them. I feel very depressed, have little social contact, but when my energy does get better for a while, I’m out there doing things, but relapse quickly and have awful pain in my muscles and joints. I get so depressed. I see a psychiatrist regularly–have to, as disability insurance requires it, as they could find little trace of anything physical except I have Epstein-Barr anti-bodies probably from that infection in 1974. Epstein-Barr can cause jaundice and I have no hepatitis antibodies. I get awful headaches and after collapsing following something as simple as just digging the garden, I have great pain and fatigue for days. I have back pain and neck pain and gingivitis. Can anyone relate to the other symptoms and what treatments if any have helped? All flower essences and homeopathics do not have to effects on me they used to. They aggravate now instead of helping. This is a puzzlement as Yul Bryner once said in “the King and I”. I have lost my life and am in worse shape than my mother!

  101. Kim, Would you please contact me on skype? My name is Dashullya on skype, or by email dashamusics at hotmail. It’s kind of difficult to discuss everything through posting the replies here. I think you are very right at many subjects and I would discuss vaccination subject.( for example – do you know that diphtheria vaccine last only for 10-15 years? When have you been vaccinated the last time?)

    For everybody else – some diseases are not cured even with the month of treatment. If you read about legionella ( which I still suspect as a possible cause) it may be resistant to just erythromicin, sometimes longer then one month treatment + rymphapicin used and many specialists write that many people just suppress it by doing so, but can not cure up to the end. For sure – we are looking for INTRACELLULAR types of infection.

  102. Kim wrote: “What do you intelllegent people think about taking antivirals, antibiotics, and oral antifungals for 1 month???”

    I used to take “Isoprinosine” (an antiviral drug) for about 6 weeks and I didn’t notice any improvement in my state. The only thing (I haven’t got any prove it was due to it) my cd4 count rised from 539 to about 1000 when I finished it.

    Take care

  103. Responding to the reposting of Kim’s question above

    My stance is that it’s not a good idea to try many kinds of antivirals/ biotics/ fungals unless you have more or less and idea what the root cause of your sickness is.

    Why?

    1) Some of them are still experimental and have side effects which are not well understood – this is especially true for antivirals which are relatively new. Even the drugs that are well understood may have adverse effects based on genetic makeup or other factors.

    2) Anitbiotics are overused by doctors and as a result we have reemerging classes of diseases which are impossible to treat, like drug resistant TB etc… or previously harmless strains that mutate into strains that can cause illness. It’s likely that we have one of these 2 classes, which would explain why it is difficult for medical staff to identify it – it’s either uncommon (thought to be eradicated) or new. I imagine this same trend would hold true for antifungals as well although I don’t have any concrete knowledge on the subject.

    3) In addition, it is difficult to study a disease if the expression of symptoms is interrupted by too many different kinds of therapy. Maybe it was the erythromycin that made you feel better, maybe it was the ganciclovir, maybe it was the prednisone, or then again, maybe it was the yoga class you started taking or a new kind of herbal tea that you are drinking. Point is, any one thing may be effective for “relieving” symptoms but the cure is only likely to come from a narrow class of things and then only under certain conditions (ex: taking the right antibiotic for several months). This may sound strange, but it is important to have persistent and demonstrable symptoms in order to characterize the disease. Hip has done a great job of analyzing these symptoms and of posting clear, unambiguous pictures of observable signs on the website.

    4) Antibiotics kill all germs, not only the bad ones. This plays havoc with your bodies natural balance of bacterial flora. It may even bring on symptoms which you previously did not experience – gas and bloating, bladder infections, etc… Antibiotics, for example, could kill a certain kind of bacteria which keeps a certain kind of fungus in check in your body. Kill of the bacteria and there is no longer a natural check on the fungus.

    5) There is also reinfection to be considered, most people share this with a spouse or family member. If you are not both treated at the same time you will just get reinfected again.

    These are the main reasons, coupled with the reports from this board that show that in all cases, these drugs are either ineffective or the effects are very short-lived.

    My own opinion is that effective classes of drugs do exist, however, they need to be taken for an extended period of time, in the correct dose, and more than likely, need to be taken in conjunction with other drugs (and everyone in your family with the symptoms also needs to be treated at the same time). Until we know generally what kind of organism we are dealing with, it is impossible to satisfy these conditions.

    Steven

    PS – I agree with Kim’s recent posting above about focussing on one class of symptoms to help with identification. For example oro-nasal-respiratory. Or skin-joint-muscle, etc…

  104. Mostly agree with Steven about using antibiotics and other drugs, unless the inflammatory reaction is so overwhelming that it prevents you from keeping yourself on the feet like it was a couple of times with our family, then my education didn’t let me just give up and say – okay, let the ambulance come and figure if they can save us. So in those extreme situations I used some antibiotics that I knew would improve the condition + corticosteroids to suppress inflammatory response of dieing pathogen. When you take antibiotics yes, you need to remember about all what Steven said – reinfection among family members if not treated simultaneously, resistance of bacterias to antibiotics, killing not only bad bacterias but the useful too ( and they help our organism to fight diseases), then immune system is suppressed when you take antibiotics for a long time. And if you have fungus in addition, your immune system may cope with fungus until you start taking antibiotics, so if I take antibiotics for a long time – all family is treated, special supplements are taken ( as folic acid that will be in shortage in your body if you use bactrim for example that kills the bacteria by means of destroying their folic acid component), I also use fluconazole before treatment and after, and of course probiotics during and after treatment. So if you know how to use it right and you feel like you need it, I think you can do it. But again, completely agree with Steven, until we know HOW EXACTLY to treat this disease- in best case, we can get relief temporarily. In worst case you may worsen your situation. That’s why it’s so important to figure what is it and how to treat it. Also many people think by some reason that only AIDS destroys immune system. NOT TRUE. Any chronic inflammation can do the same and then you will have secondary immune problem. The earlier we find what’s the reason, the better the prognoses for all of us will be.

  105. Absolutely amazing. I’ve got all these symptoms including the aggression spouts. I’m sure there is a common link we all have. For instance, do we all have bad teeth with fillings? Do we all have the same blood type? Do we have acne? Do we all have a high sex drive? Low sex drive? Thyroid problems? The amalgam fillings theory sounds interesting. Whose to say they don’t have an effect after a couple years?

    I have alot of amalgam fillings in teeth for 17+ years.

    Also have some dental implants.

    I have acne (not bad on the face, but on the back).

    I have a high sexual drive.

    I have bad eye sight since a kid.

    Under weight.

    O+ blood type.

    Like to eat meat and pasta and bread.

    Have long fingers and big feet (Slightly big feet).

    Small ears.

    Blue colored eyes.

    Slightly big nose.

    Own a cell phone (hey, never know, that RF microwave stuff)

    Sleep with the TV on

    I am a go-getter type of person when it comes to doing something.

    On the computer alot (Who isn’t though nowadays)

    Hate yogurt, liver, cold steaks, caviar, and other weird stuff

    I am divorced

    Maybe if all of us posted our body info, characteristics, and habits like I just did, maybe we can see a common link. Can’t hurt right? Especially since all the doctors look at us like we’re crazy. Give it a shot. I know some of it is wacky, but it will be interesting. You never know. Maybe if you have blue eyes, with big feet and amalgams, you are predisposed to have this. Again, I know it sounds off the wall, but what do we have to lose? If you can think of anything I left out, let us know.

  106. To Cynthia: Have you been checked for MS? My sister has Multiple Sclerosis and so many of the symptoms you mention sound like what she has been through. Just a suggestion. Good Luck!!

  107. Update: Now into the 5th month of whatever this thing is. After all the research, I have pretty much decided that this started when the friggin docs overdosed me on antibiotics for strep throat. I should have been smart enough myself to realize that 4 courses of antibiotics was wrong. Anyway, blood test confirmed the EBV a month ago. Still coursing its way through my system. Good days, bad days. Unfortunately, now have a patch of shingles on my back. Ah, now we see what happens to a very healthy person once the immune system is compromised. Underside of right arm and should have been numb for a good week now. Very strange feeling. Sore throat, fatigue – all continue. Have a doc appt on 6/13 – plan to be very vocal about all this chit going on in my body. I am really REALLY tired of it. I read all of your posts and wonder how you can go all these years feeling like this – I don’t think I could make it “years”. I’m only 51 and WAS having the time of my life!

    Keep posting. I learn a lot by reading. I am really thankful to HIP for starting this. There is a lot to be said for not feeling so alone in all this misery.

    Striving for wellness!

    Cathy

  108. Cathy-

    I agree, how people can go so long with this, But i think that I could have at least rule out some obvious diseases instead docs in Mississippi are telling me I and my family are healthy.Sometimes Boris and I are kidding that it would be very teaching to sneeze at docs to make them feel as we all feel..lol.. No of course not, I would never wish anybody to have what we are going through. But I am wondering. Okay, I live in Mississippi where doctors find puss in my glands thinking it’s food, but many other people live in central areas , they can find good specialists and if they have insurance there should be able to pay something like $1000 or at least $3000 out of their pocket and then you can go to any clinic and any specialists to do researches… Is it right?

  109. Dashullya- I thought I was healthy as a horse in January 2008. Live in South Florida and extremely active for age 51. Only complaints I had was an incredible weight gain over the past couple years, even though I went to the gym 4-5 evenings a week after working 10-hour days. For the most part, I eat whole foods, very little if any processed foods, etc. Other complaint was hair loss for the past couple years and joint pain. Had the thyroid tested a couple times and it was normal. I believe NOW, that these complaints were due to needing hormone replacement therapy (lost the uterus 6 years ago = the dreaded menopause!)

    However, in February 2008 I got strep throat, a staph infection in my finger, and staph in my urine. All at one time. When on the antibiotic I seemed to recover. After stopping the antibiotic, within days I was sick again (fever, sore throat, etc). So my former doctor prescribed antibiotics a total of 4 times. I believe that killed my immune system. Or crippled it. Current doc ran tests and determined that the Eptstein Barr Virus has revived itself due to the overdose of antibiotics. Also have Herpes Simplex II, which I’ve known all my life. Have a patch of activity on my back which is probably shingles (self-diagnosis – too tired out from all this to get into the doc’s office until my appt on 6/13/08) and part of my right arm has been numb for over a week now.

    Whatever I may or may not have had prior to February, has escalated to the point that I am not functioning well at all. As a matter of fact, I am not even going in to work today- just can’t make it.

    I don’t know if my symptoms fit with this group – all I know is that I have so many odd & unusual symptoms and that my body is not cooperating with my mind. (Speaking of my mind – I am not sure of stability there either anymore).

    Wow. I never thought I would find myself in a position like this.

    To respond to your location and your comments: my brother-in-law lives in Biloxi, MS and was being treated locally for colon cancer (age 44). It was not going well so they got a referral to MD Anderson in Houston, TX. Major improvement. So yeah, you make a good point.

  110. So I saw ENT doctor yesterday for my chronic inflammed pink/geen nasty draining tonsils ( I’m talking years of this), and what does he say…..they are a “+3″ (which means…+4 is largest, so they are larger). Hypertropied (scarred with large pits) AND THEY NEED TO COME OUT!!!!

    I asked him about antibiotics, he said they might temporarily help, but soon my symptoms would be back. Well I am going to investigate further on this. Getting a body part “cut out” , is not an answer for me.

    I’m going to find a “holistic MD” and see what they have to offer. Anyone know of any top notch ones???

  111. Kim – my boyfriend (age 46) just heard the same thing from his ENT. Said the tonsils are causing his sore throat and sleep apnea (for which he already uses a cpap). ENT also wants to straighten out his “deviated septum” (i.e. crooked nose) and scrape his palate (ewww). Pretty invasive if you ask me.

    I wonder how many of us here still have our tonsils?

  112. I also have been having the same symptoms for several years now. I do think antibiotics will help but you to have be on them for a while. I also had 3 mrsa infection at the same time. So I havn’t had any infections in the last 4years but I do believe their maybe some kind of connection. Best of luck to anyone with this problem. Cipro works the best.

    Hi Latreese. Thanks for your comments. Please tell us more about your experience, and how Cipro (Ciprofloxacin) helped the symptoms. Are you still taking it? If you stopped, did the symptoms get worse again?

    Many thanks – Hip

  113. Cathy-

    Thank you for the link. The problem why I can not go to any study is this. All fatigue and everything started 3 years ago. I didn’t have insurance then but was knocking the doctors’ doors almost every day – no help. They said it may be related to CFS but whn the whole family got sick immediately took these words away. Now I am smarter I think. I ve got an insurance about 7 months ago and now if I mention fatigue they may deside it’s preexisting and never cover. So I have to go with – tonsils, Gyn symptoms, cough, skin – something I didn’t mentioned several years ago, and something they really can do the tests on. But thank you anyway.Keep in touch

  114. I asked the ENT if he ever just takes a “culture” of tonsils to see what growing in the pus pockets, he says that only if other symptoms present such as one tonsil bigger then other, fatique, discoloration, no pain, etc. I was like “hello”, how about me then? I have one tonsil bigger then the other, no pain, discoloration, fatigue, weakness, gums receeding, etc. He says it still would not help and getting them removed is the answer. He then scoped my throat with some steel looking instrument to check behind my tonsils and my vocal cords because I insisted I felt something back there while I swallowed, and I have alot of “hoarseness”, voice changes, etc. So he looked and didn’t see anything to be concerned about. I will not get my tonsils cut out unless my airway is compromised, I believe they are there for a reason.

    Cathy~ to have your boyfriend go thru all that would be torture. I have seen some postop’s with that type of surgery come into ER with complications of pain, bleeding, and swallowing difficulties. Did his MD give him any alternatives like weight loss, change in diet, and neck/mouth exercises to see if that helps? CPAP should also be helping if he has sleep apnea…

    Take Care…

  115. Kim-

    Tonsils have protective function. They hold the infection and doesn’t let it to go any further. Also play immune function. Sometimes chronic tonsillitis may be the reason of fatique because it may content the infective agent that would be poisoning the whole organism. In this case the doctor usually decides if it’s better to remove them or keep them. They wash tonsils with antiseptics in Russia.

    But I wouldn’t remove them not because of their protective function right now. I wouldn’t remove them because I suspect that if you take puss out of tonsils and do

    1. acid fast staining

    2. gramm staining

    3 spore staining

    This way we MAY find the infection. Of course culture wouldn’t hurt, but I believe several types need to be performed mycobacterial is one.

    I personally think that there is no need to waist your time on doctors like you ve had an appointment with. We all need to find doctors that will provide the tests like these and treat your problem seriously.

    Here is a very interesting research about TB found locally in tonsils.

    http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1754508&blobtype=pdf

    Good luck and be healthy.

  116. The original poster who started this thread should have better ways to spend his time than giving a detailed, week by week account of his “symptoms”. Regardless of his belief this is a new, horrible, virus, with bleak outcomes that may go away over a long stretch of time, his medical problems should be between him and his doctor, not spreading this around the internet and scaring people who are prone to anxiety from reading about symptoms. Whoever is reading my post, PLEASE go to your doctor if you are not feeling well, BUT DO NOT FALL INTO THE TRAP of reading symptoms on the internet and applying it to yourself. The person who started this thread had no business putting his medical information out in the public eye regardless of his motivation to “share with the world” the possibility of a new virus. Let me explain further: I just got over an upper respiratory virus, and yes it lasted a few weeks. I am PERFECTLY FINE now and did have a sore throat and some other odds and ends THAT ARE RESOLVED. I went to my doc a couple of times and then read the original post above and freaked out from it, like I am sure some of you have already done. It sat with me for days, thinking that my brain was going to be affected, etc. etc., and now that I am back to normal, feel very angry at myself for having fell into the trap of reading about his symptoms and scaring myself sick. If YOU are reading this, just know that you have upset many many people with your very detailed account of something that should have been kept private.

    Hi Day Dean. May I suggest that you are by nature a very anxious person and susceptible to paranoia. When I first got this first this sore throat, although it was quite bad, I did not even think of going to see a doctor, or running like a hypochondriac to the Internet to check it out. I assumed it would pass on its own. That is called being normal, as opposed to being easily frightened. Only after four or five months, as more and more symptoms appeared, did I start to think something was rather unusual with this bug that I had caught, and only then did I go to the doctor.

    I guess it is not your fault, entirely. All the news and media we encounter daily tend to put the deepest fears and gloom into the general population. Try being more optimistic. Otherwise, the next time you get a a little pimple on face, you’ll fall into more paranoid terror reading web sites on skin cancer, bird flu, or who knows what.

    Many of the people posting here have serious conditions, yet they remain relatively level-headed and focused. You need to relax more and get some perspective.

  117. Hi Day,

    I’m afraid you don’t understand, its not as if none of us has been to a doctor. The problem is that whatever it is each of us is experiencing has not been diagnosed clearly by the medical community. You had an upper respiratory virus for a few weeks… I’m sorry to hear that but…. multiply your symptoms by a factor of 4 or 5 and then stretch it out over the course of a few years, hard to imagine isn’t it. That’s why we feel compelled to seek information in this format.

    Where I am at the moment, I have trouble getting 10 minutes of face time with a doctor, and the doctors I do see aren’t too interested in things that can not be diagnosed in under 10 minutes with a standard battery of tests. I personally have dealt with this for 3 years and I’m quite sure its transmissible. That means that if I don’t take matters into my own hands I may result in other people going through the same kind of hell that I have. If you’ve read this forum, you also understand that it’s not just us, it’s also our families that are affected by this. So if you think its better that we keep quiet, and just let our doctors deal with it…. then you are either incredibly naive or have a total lack of human empathy. This forum wasn’t created to freak people out. It was created to approach a serious and documented problem in a systematic and informed manner, to share information and to look for common denominators. If you don’t like what’s going on here… then… go somewhere else, or better yet, just stop searching the internet. It’s really that simple.

    In closing I, and I’m sure several other people on this board, either work directly in the health care industry or have a detailed knowledge of medicine and/or epidemiology. The worst thing that you can possibly do in this kind of situation is to keep medical information quiet. Would you rather public health officials keep outbreaks of of TB, MRSA, West Nile Virus, or HIV quiet as well… See how well that works out for you.

    I think you have better things to do with your time then to harass chronically ill individuals who are doing nothing more than looking for some answers.

    Steven

  118. Nonbelievers

    I have worked in direct contact with the sick and diseased for 14 years. Having being exposed to all types of bodily fluids directly and indirectly.

    In the last 2-3 years of working in the ER, I have noticed an overwhelming increase in truely “sick” people who otherwise should be healthy for there age. MRSA, resistant staph epi, pseudomonas, strep, etc. These are REAL “bugs” out there that you can not see and you don’t know you have them until they are overwhelming making you feel sick.

    I know what it feels like to be “healthy” and I know what it feels like to be “sick”, I’ve seen it and felt it first hand.

    So feel fortunate that you only have a cold, hopefully it won’t turn into a lifetime of immunocomprosities for you.

    Sorry you feel this is not “real” , but obviously if you look and read the number of people who have shared there symptoms, numbers don’t lie.

    Good Health to you…

    Very interesting to hear about this ER experience, and the recent general increase in sick people you have seen – Hip.

  119. For some smarters,

    1.MRSA and staph is quite different things. One bug type but different suscept. -as result – quite different diseases.

    2.MRSA is VERY RARE out of hospital. So in all “exhospital” cases first of all NORMALL docs should think about lab contamination of the samples.

    3.Staph(including MRSA) is not related with this conditions.

    4.Antibiotics is NOT damaging the immune system. This is myth…

    People, try to read something more than just this blog… pubmed.com for example….

  120. I have had a chronic sore throat for over 9 months now and it seems like no doctors can figure out what it is. I have a weird white coating on my tongue which looks like little white bumps, mostly collecting at the back and despite brushing my tongue and teeth twice a day it still comes back every day and i feel like it is causing me to have bad breath. My glands in my neck are very swollen and sore also. I have been extremely depressed and tired lately and very stressed out. I even had pink eye, an ear infection, and multiple yeast infections in the last few months which is not normally something I have to deal with. It’s hard to know about the stomach stuff because I have Crohn’s disease, which is an intestinal disease, so I normally have to deal with issues such as diarrhea and stomach pain, so those types of symptoms would not seem abnormal to me. I have been researching online what the possible causes of all my symptoms could be. I have read a lot online about HPV and its link to oral cancer. There are over 100 strains of HPV, the most well known ones cause warts and cancer, but I also read that 37 types of HPV cause throat infections. Doctor’s i’ve seen were extremely unaware of the link between oral cancer and HPV. I have been very paranoid about this and look at my throat in the mirror constantly. I won’t even kiss my boyfriend without brushing my tongue or chewing some gum at least. I worry that this virus could be caused by HPV and knowing that there is no cure makes me even more depressed. Reading this made me feel a little better, that possibly my symptoms are not the result of HPV, but no matter what, it sucks, because antibiotics do nothing for viruses, so am I supposed to live with this for the rest of my life? Sometimes my throat feels like its burning, and I am constantly drinking something because it feels kind of dry. My nose is constantly stuffed up and running down the back of my throat. I have to blow my nose every day. I hate this, I feel like doctor’s don’t listen to me, and I don’t know what to do about it anymore. I have an ENT appointment next week, I was hoping to find a doctor who might be able to give me something, anything, that might help me, or at least calm my fears about oral cancer or warts. But since I am only 21 I feel like they don’t take me seriously at all when I tell them I’m worried about oral cancer. I read that orapharyngeal cancer causes symptoms such as ear pain, persistent sore throat, pain swallowing, difficulty swallowing, etc., and has a high mortality rate due to the usually LATE diagnosis of the problem. This freaks me out and sometimes I feel like I want to just die so I don’t have to worry about this 24/7 anymore.

    Oh yeah… totally forgot about the headaches… been getting very severe headaches that last for hours… although before this year I’ve hardly ever had a headache in my life

    Thanks for posting, Mel. First of all, its quite unlikely that you have oral human papilloma virus. Your symptoms could be caused by any number of viruses or bacteria. Have you been tested for Epstein-Barr, coxsackievirus, cytomegalovirus? These can all cause the symptoms you have. Have you have bacterial cultures performed on your throat? And how did all your symptoms start – was it with a sudden flu-like illness or a sudden sort throat; or did your illness start more gradually?

    On the subject of anxiety: you need to be aware that many of these persistent viruses can change the way your mind works, and so abnormally increase you anxiety responses, so that you begin to worry too much. Then you can get into a panic about anything you read, such as cancer, etc. The best thing you can do in the short term is try to reduce your anxiety levels (which is not easy, as many people here know). Perhaps get some anti-anxiety medication from your doctor, or try some natural anti-anxiety remedies. Once you deal with the anxiety, you may find you start to think more calmly and clearly, and this will put you in a better position to tackle your other symptoms.

    Hope this helps – Hip

  121. In response to my comment about Cipro seemed to work better for me. The crawling sensation have stopped but I’m currently going to have testing done on my lungs or sputumn. Because I told my dr. a while back I thought my saliva was actually infected because of a weird sweet and sometimes metalic taste in my mouth. But being on Cipro (for sinuses), and clindamycin (skin) amoxicillin (throat) took care of majority of my symptoms. But sinus drainage is still draining to my throat especially during sleep. So check you sputumn, and next step I’m going to also see about having a gastro study as well. I really think a stronger dose of cipro would have gotten rid of mostly everything sooner If Dr’s would listen more. Also check above your ear to see if it is swollen. Don’t let Dr.’s rush you because we pay their salary. One more thing: check Cpk level (creatine phosphokinase / creatine kinase) because mine was tripple the amount it should be. Which means muscle damage.

    Many thanks Latreese – Hip.

  122. hi everybody. I thought some thoughts of mine could be useful.

    1. All my relatives and I had a good quite prolonged effect from taking macrolids ( erythromicin or clarithromicin) + just one 250 Cipro a day for about a month total. We finished this course about 4 months ago and still in pretty good shape. Also we are not the first who saying that it seem help. The head still clear, no fatique and at least most of sleepiness has gone.

    2. If somebody is going to do serious tests stop taking antibiotics and anti-inflammatory drugs ( nasonex, corticosteroids) preferably a month before you have an appointment for the tests. They may influence the infection enough to make the tests false negative.

    3. If somebody hears about GREAT infectious specialists anywhere in USA, please let us know and share your experience. There’s no need to knock the ” empty door” or in other words to bother doctors who don’t really want to do anything about you situation. Instead would be good if all people with our symptoms ask friends or share their own experience, may be they already know about Excellent specialists. The more I study our disease the more I understand that in our case the difference between good and EXCELLENT specialist is crucial.

    3. I ve heard about Evidence Medicine Institutes in USA that can accept samples, identify the pathogen + make a video for you. So may be it wouldn’t be too bad idea to ask doctors that you go for the tests to keep the samples and send them to Evidence Based Medicine Institute? You know labs are different, specialists also sometimes mistaken or just don’t take into consideration ” a few bacterias” which also may be important.When the video is done – nobody will deny the fact.

    I Will not even comment the guy with ” paranoiac believe in ” doctors will help you and if they think you are healthy you are the crazy one”. People should have a chance to find what they are sick with and not to be limited by fools and sohpmores.

    Thank you

  123. Kim- BF is a 47 year old police officer, works night shift, on the go constantly. Overweight for sure. Thyroid was irradiated in 1982 so lives on Synthroid. Doctor just put him on Cytomel to assist with weight loss. He does have the CPAP and it certainly has improved his sleeping; however, he would love to be able to sleep without it and I think that is why the tonsillectomy so much appeals to him. I did look in his throat and it matches mine! His gland are swollen like mine also. I am going to insist he get a second opinion at the very least before going under the knife – think he’ll listen? lol

    Thanks for you comment.

    Cathy

  124. Hi. I have a really bad sore throat right now. Much worse than usual. I started to read online to try to figure out what is going on. I came across this blog. Now I am researcher at a biotech company that makes quality controls for nucleic acid testing of infectious diseases. I work with mostly inactive viruses, but a lot of the common herpes ones are still active. I just started at this company in Jan 2008, and since the first day I was there, I got sick. It started with a quick flu-like cold (or atleast I thought it was that). I can’t remember if I got a sore throat then or not. But what was strange was that happened at the beginning of JAN and by JAN 31 I was sick again with another cold, and I am generally really healthy and have never got a cold twice in the same month. This time it was bad sore throat that lingered for like two weeks, kind of gradually went away and then sort of came back and slowly faded away. I had a like a one day spell of like chills suddenly one day in March out of the blue. I think I had another cold in April. And now I am sick again, except now my throat feels like pins and needles are in them. The lining in my mouth is all irritated and sore, and food make everything burn in my mouth. Now I am usually one of those people that reads about a disease and immediately notices that I have some of those symptoms, so I think maybe I have that disease? So I could be jumping the gun, after all it has been only 6 months. But as I read more details I am realizing that I am experiencing a lot of the symptoms you described. For example, re-occurring sore throat , eczema flare-ups, receding gums and more heat/cold sensitive teeth, itching all over my body, loss of motivation, slurring of words and speech, loss of words, exercise intolerence (although I am training for a 1/2 marathon and I thought it was just mental, and push through it anyway), inability to lose abdominal fat, even though I eat healthy and exercise 5 days a week. Like I said don’t know if I am trying to make my symptoms fit this disease or if it is real. I am going to see the doctor for the 1st time, so I am expecting them to send me home, with a real general answer- the common cold, or maybe even strep. But it has been only 5 months and I am trying to be proactive about the possibilities. Especially if this could be due to an occupational exposure. What do you think?

    REPLY: Hi Reina

    Many thanks for your posting on the the Chronic Sore Throat blog. This blog has become a small community of people in the same or similar situation, looking for answers. In particular, we want to identify this pathogen/s, and then try to cure it.

    Let me put your mind a rest a little. It is possible that you may have this pathogen. These recurring-disappearing cycles of the sore throat are common in the early stages; six months to a year later, the sore throat does get slightly better, but never vanishes completely, and still comes and goes from week to week or day to day in cycles. It feels like the immune system had almost cleared it, but then it comes back. But other pathogens can also cause these symptoms.

    As you say, it is easy to to make a set of symptoms fit a description, so let us not jump to conclusions. If you have caught it, however, then things will not get much worse than they are. I caught this pathogen in the middle of 2003, and now, 5 years later, it has stabilized, and not got any worse – but has not cleared up either. This is just to give you some parameters of this condition.

    My guess is that, if you have caught the same pathogen, it is probably not through some kind of occupational exposure from you workplace. This bug spreads slowly but surely by ordinary social contact, so this would be the most likely channel of transmission.

    There are several people in this forum, including two microbiologists, actively pursuing answers. There is a healthy debate as to whether this is a virus or another pathogen such as a mycobacterium. So if you have any questions, or want to share useful information or ideas, keep reading and posting on this page.

    Hip

  125. To All,

    I developed a blood staph infection just about two yrs ago from apparently a medical procedure at a hospital. In addition to the staph infection I had pneumonia and a sinus infection as well. I literally almost died. I was released after about a week of being pumped with antibiotic IV fluids. They kept trying antibiotics and FINALLY, either in combination with all they had used or one specific antibiotic, I began to show improvement and was released after 7 days.

    About a year ago I developed a SEVERE sore throat it gradually got worse over a three weeks time period. I went to my regular doctor who gave me an antibiotic and sent me home. It HELPED but it was still there. I went to another doctor who did a throat culture for strep and it was not strep. He did tell me that due tot he large numbers of antibiotics I was taking that they cause a yeast infection in my throat–never heard of that before. He gave me a medicine for that and it cleared up…for a few months. I developed another sore throat…my regular doctor gave me another antibiotic and it seemed to work. Now as I speak I have another sore throat and large amounts of varying colored mucous coming from my sinuses and I am couging up yellow and brown mucous from my lungs. There is so much mucous it is causing me to gag and throw up. Still with a low grade sore throat.

    I have noticed periods where I get SO SLEEPY all I want to do is to lie down..I can’t function. I have appetite swings. I have also developed joint pains…knees, hips, and fingers, that I originally attributed to the possibility of arthritis.

    I Googled my symptoms and found this site.

    Are there ANY doctors who can help treat this crap? This is horrible and it won’t seem to go away.

  126. So B.O.R.I.S. does not believe antibiotic over-use can weaken the immunity system? Logically: if antibiotics eat bacteria, and when there is no longer any bad bacteria, these antibiotics begin to eat good bacteria, which is necessary for system stability…..

    Anyway, doesn’t matter. I don’t have the energy to duke it out with people who post to criticize. Just wanted to report that the doc today said EBV still reigns. Confirmed shingles. Had the following tests: Lots of bloodwork, will run the test for RA (familial history), had a thyroid ultrasound, bone density test, chest xray and the lovely mammogram :)

    I don’t belong on this forum because I have a positive EBV that comes back as “active”, which accounts for the sore throat. All the other symptoms belong to something else which, hopefully on June 19, will be disclosed.

    I wish everyone on this Board well. It is miserable to be sick and not know what is going on in the body. The anxiety and depression that accompanies an unknown illness is overwhelming sometimes. You are in my thoughts – never give up looking for your answers.

    Hip, I have nothing but respect for you.

    Best regards,

    Cathy

  127. Hi everyone.

    I would like to ask how many of you could say that he or she caught the disease by sexual intercourse?

    Lot of health,

    Edward

    edward_mazur@onet.eu

    REPLY: The germ is usually contracted via respiratory secretions, such as saliva, and is easily transmitted by mouth-to-mouth kissing. People may think they caught this respiratory bug from the contact of sexual intercourse, but more likely it is transmitted by the mouth-to-mouth kissing that often takes place during sexual intercourse. – Hip

  128. The problem is that I didn’t kiss the person I supposedly contracted the disease from. That made me almost sure at the beginning it was acute HIV infection.

    By the way have you seen the “I remember Me” documentary??

    Regards

  129. I mentioned the Garlic pills back on May 26th. They have helped my sore throat and drainage tremendously and even though there are so many other things going on that need help it has been wonderful to have these two symptoms gone. Now maybe my chronic sore throat of I believe 4 years now is something different from yours but if something as simple as taking 6 garlic pills of 500 mg. a day would help even just a couple people to rid them of their sore throat and drainage how wonderful that would be! I doubted they would help me until my Dad gave me a bottle and I decided what the heck I’ve got nothing to lose. I just wanted to mention it again in hopes a few people will try it and let me know their results. Good Luck and God Bless!!

  130. Hi Maureen. Many thanks for your comments and updates. I would be interested to know whether trying the garlic extract Allicin may fix your symptoms even more. Allicin is the main anti-microbial ingredient of garlic. You can get pure Allicin in 180mg capsules. One 180mg capsule is equivalent to 80 cloves of garlic, and you are allowed to dose up to 9 such capsules a day, according to the manufacturer! The brand name is AlliMax. It is odorless.

    Allicin is antibacterial for a wide range of bacteria (both Gram-negative and Gram-positive), including Mycobacterium tuberculosis, as well as having antiviral, antifungal, and antiparasitic properties.

    Allicin extract is relatively new, and there is a growing interest in using it to treat chronic fatigue syndrome illnesses. See here for more details on CFS and Allicin.

  131. Candida albicans is a fungal infection in the gut but over time can finds its way to the blood stream.Not only does it cause pain but it can cause a multitude of symptoms.In time damaging the immune system making you suseptible to cold flus infections ect.Causing more antibiotic therapy and more candida infection.The only way to clear this condition is to clear infection with antifungal drugs and replenish the bodys immune system.For anyone suffering from this please get checked as soon as possible.Symptoms can be recurring infection of any kind joint pain muscle pain muscle twitching chronic fatigue white coating on tounge also known as thrush,anxiety depression migraines numbess and tingling in extremeties poor sleep habits severe bad nightmares and finally sore throat caused by post nasal drip.I had it and it was horrible.On my way to recovery now good luck to you all!!

  132. Yes this is yeast .And h-pylori .I can trace it back when i was 3 years old .I think mine was handed down to me by my parents.Sore throat got better when i got thirty years old. I gave it to all of my girl frinds.I know five or six had somthing like ring worume below one of their breast.I had the same thing on my stomich when i was seven or eight. I will wright more later.

  133. I’m not quite sure if I fit the mold for the “Virus” at hand. However I do have some of the symptoms described. I started out a very healthy 21 year old mother of a newborn baby who went to the DENTIST for a routine extraction when my symptoms started. One tooth pulled and a week later I developed the most terrible case of what I and the doctors at the ER thought to be strep throat. I was given medicine and antibotics (sp?) and sent home. It was only after I continued to have “Strep Throat” for the next 6 1/2 years that no one caught (even my husband or my breastfed son) did it dawn on me that something was very VERY wrong. Now I had gone back and forth several times to the doctor everytime it would flare up and even though I told my doctor it was not contagious i knew different. I have had to deal with Zithromax about a million times, Amoxicillin a million and a half, countless amounts of pain killers to stave off the pain in my joints, throat, head and to stop fevers. I live in constant fear of my next “Strep”. my imunity is gone! I went out for a while in 60 degree weather and figured I would be fine and was dressed for the weather only to wake up the next morning with a full-blown “strep” attack. I have developed RLS, and some not many panic attacks.

  134. Aside from the slight wrinkling of the skin this clearly describes the chronic condition which I have. I’ve had this condition for 3 years now constantly going to multiple doctors all baffled by my symptoms. Are there any research studies being conducted for people with these symptoms? I’m just getting over yet another fever accompanied by a massive sore throat (not the everyday pain, but worse…) In my case Ive noticed changes in my behavior, diet, balance and vision. Also I’m a 25 years of age with over active bladder. It sucks having an unknown disease but multiple symptoms…

  135. Hi!

    Just found this site…I seem to have all of the symptoms except my sore throat comes and goes. I actually thought much of this was part of perimenopause, because with the exception of the sore throat–which every doctor seems to attribute to “allergies”–, many of the symptoms mimic severe menopausal symptoms. I am only 43 years old though, and so to me that just seemed like a convenient diagnosis. I was diagnosed with CFS by one specialist, but he did not offer me much in the way of any solutions other than to eat lean protein. Because I am thin and very athletic, most doctors just don’t get that I feel sick constantly. I had coxsackies as a teenager, and a mean case of mono–lately I have felt like these have surfaced again, although I don’t even know if that is possible. Thanks for the site.

  136. To “Tired of This Help!!!”-

    Did you have your tonsils removed…?

    Not sure if I fit the mold of this virus, but definitely have some parallels.

    I too have had strep about 5 or 6 times in the past year.

    The unusual Strep C, even when a culture comes back negative I often have a sore throat.

    I’m 30 something male, and haven’t had strep since I was a kid until this started a year ago.

    Doctors don’t take me too seriously and just say have your tonsils removed, or dismiss it to allergies during the periods when I haven’t had step, which was recently 5 months without it, then returned.

    Two yeast infections, bad case of mono over the Winter (mono virus was just again retested for and is out of my system), and 4 months ago the chronic post nasal drip started, and it is indeed non-stop.

  137. There has been some recent news that the antibiotic cipro (ciprofloxacin) can cause ruptures in tendons, occasionally even after just one dose. Other members of the fluoroquinolone family of antibiotics may also precipitate this side-effect. Given that our pathogen already weakens connective tissue, fluoroquinolones should be used with caution.

    Genevieve had already posted similar comments about fluoroquinolones back in May, so this is just to re-iterate the point.

  138. Hi, thanks for dropping by my journal. A few more details, I had many of the mental symptoms you described, foggy thoughts, appaling short term memory, very load tinnitus, anxiety was ridiculou, yes even around family and friends. I managed to continue working but it was a struggle and for many months I’d go staight to bed after work. The symptoms dropped off a bit eventually, perhaps aided by large doses of B vitamins, B12, Mg, Lecithin and Vitamin C in 500-1500mg/day, though not consistently through the duration.

    I didn’t have your other symptoms though, e.g. the collagen related issues, changes in sight, etc. I am fairly certain mine was a brain infection with an enterovirus and that vitamin C has now either (A) eliminated or greatly reduced the scale of the infection, or (B) is mopping up problem toxins, or (C) some combination of the two.

    This last 3 weeks I’ve been absolutely fine, my mental capacity is back and is actually better than It’s ever been, my vocabulary is back, the weird clumsiness in my hands is gone, anxiety – I’m confidently talking in front of groups of people without a second thought, I’ve never been able to do that, even before the virus. I’m working all hours god sends and not feeling the slightest bit fatigued on 7 hours sleep.

    To be honest I’m over the moon right now, I’m still taking 15g/day of Vitamin C during the week and 20-25g at weekends. Ultimately I want to try and reduce the dose to find out if if the symptoms will return or not – is a virus still present/active?

    Please also note that vitamin C has anxiolytic effects in the general population, so at least some of the effect I attribute to that, since I’ve always been an anxious person. These last 3 weeks it’s like a switch has been thrown, I don’t just feel a bit better, I feel totally cured. I feel like I’m going to follow in the footsteps of Linus Pauling and become wat some might call a Vitamin C ‘nut’ :)

    If anyone wants to discuss this further please feel free to comment at my LiveJournal page or send me a direct message via the LJ site here.

    I think everyone with viral symptoms should be taking at least 1-2g day of vitamin C just to keep levels at normal. You say you have collagen problems, well Vitamin C is (A) used up by the immune system and hence could well be well below normal levels and (B) is critical for collagen formation.

    Cheers,

    Colin

  139. I have been having the same symptoms for almost 3 years and its getting worse. I now am sensitive to loud noise, and bright light. If i look at something to long it gets distorted and moves. Dizzy, irritable, and lack of ambition are really topping the charts. Also sometimes i am so tired i can’t function nor can i sleep. Like alot of other people on this site my throat is sore constantly but is always on the left side.

  140. I am going on 14 months of this crap. I’ve been to doctor after doctor with no luck of them helping me. Some have acted like I was making it all up, while another told me it was allergies to my dogs and I should get rid of them. I hate this thick, clear gel like mucus in my thoat. It has ruined my life and my throat is always sore and ears have pressure in them constantly. Is there any help out there for this?

    REPLY: Thanks for your post, Sandy. There are several people here on this site trying to find some answers, but there are no easy cures. You should really go to an infectious disease center to be tested (one of the best is the Mayo Clinic). Let us know what you discover. Best regards. – Hip

  141. I too have been infected by this insidious disease. Started in January and have been unable to find any lasting relief, however I did exhibit some improvement while on a doxycycline regimine. I have displayed most all of the symptoms outlined within the text above. The periodontitis is quite severe and and is very suggestive of immune system disfunction. After many months of research, my focus has shifted towards mycoplasma fermentans and the brucella bacterium. If I find out any thing significant I will keep everyone informed.

  142. Wow, finally answers. I’m 28yr old m. Always been healthy as a horse until this past year. Definitely something crazy is going on w/ immune system and joints and throat. Thanks for all of the helpful posts.

  143. Some of you may have a “new” virus, but I’m thinking that most have a high level of stress/anxiety and too much focus on some weird disease. How do you fell when you wake up? Do you symptoms exist when you are having fun? Do you symptoms come and go during the day? Do you feel better after a glass of wine of two? If you answered yes to any of the questions, reexamine yourself for anxiety, stress, or even irregular breathing patterns. Breathing from the chest or shallow breathing can cause muscle tension which can lead to lethargy, sore muscles, sore joints, pains. aches, rashes, and a host of other symptoms. Research the web for breathing techniques and progressive muscle relaxation. Even though it takes a while to master these techniques, it will reward you. Constant sore throat? This can easily be caused by chronic neck/throat muscle tension. Sinus congestion caused by the same. Like I said, it takes a few days/weeks to master the ability to control muscle tension. Breathing habits are easier.

    Just my two cents. Those who do have a virus. I pray that you overcome your disease quickly.

  144. I have had a sore throat and am progressing in the various other symptoms, which started after a massage. Prior to the massage I had hip pain on the left. Since the massage I have had a progressive sore throat that is worse at night to the point that I am having trouble sleeping and swallowing. I have had the sinus pain and memory issues as well. All the pain seems to be on the left side- my hip, throat and sinus. I don’t know if this is a new virus, but it certainly did not respond to treatment for strep throat and now is much worse. I hope some help comes soon

  145. I thought it had something to do with Katrina. I live in New Orleans and was here through the recovery period while my house was being rebuilt. Getting all the water damaged furniture out of my house exposed me to a lot of mold and mildew. The frame of the house was the only thing worth saving and it was treated by professionals for mold. Everything else in the house is new though!

    It’s been almost three years and my sore throat, cough, bronchial congestion, nasal mucus, sinus headaches etc…..won’t go away. Been on antibiotics several times, nasonex, flonase, astelyn, albuterol inhaler, saline spray…..nothing works. It’s scary so many other people seem to have the same thing.

    REPLY: Thanks for your comment. Do you have any of the mental symptoms, like depression, lack of motivation and/or pleasure, constant anxiety, loss of working (short-term) memory, memory recall difficulties (especially for words and names)? I know what you mean about so many people having the same thing; with the rate that this virus is spreading, perhaps nearly everyone will have it in say ten years. – Hip

  146. Get a copy of Ed McCabe’s book “Flood Your Body with Oxygen.” I have known many of the above problems to go when oxygen therapies were applied correctly.

    This is a 640 paged book and covers all know ways to oxygenate a person’s body. Good medical studies too.

  147. I wrote earlier–I am the person that was dianosed with CFS by one doctor, and perimenopause by another. Yet, the sore throat persists, anxiety, lack of motivation, and most especially the brain fog/memory recall. Not being able to recall words and names is the worst–in my profession it makes me less than credible. My husband, I have noticed, greets me on a regular basis with”How do you feel?” instead of good morning, because I guess so often the type of day he will have is determined by this. He had the sore throat experience also, and his comes and goes, but his symptoms are not nearly as bad as mine. One interesting thought: My girlfriend, who also has the same symptoms, claims all of this started after we took an antibiotic called Levaquin for severe sinus infections. (Levaquin is part of the quinolone drug family which includes Cipro). We both got really sick from the antibiotic, which causes a host of problems including muscle weakness, tendon damage, extreme depression, etc. I wonder how many other people that post here have take a quinolone drug in their past? It is amazing that so many are experiencing the same thing here.

  148. Hi: First, forgive me if I repeat anything that’s been said in previous e-mails. I was recently diagnosed with chronic Epstein-Barr, and share almost ALL your symptoms. Initially, I had even more neurological problems, on top of everything else, and kept getting sent to psychiatrists. It turned out that, in addition to the chronic EB, I also had severe spinal stenosis at the C 5-7 level, and underwent corrective surgery back in March.

    One note: The white “slime” on your tongue is most likely hairy leukoplakia, not thrush. This condition occurs with chronic EB, and is usually benign. Of course, your dentist or doctor would be the one to ask. For me, it comes and goes. The severe, and rapid, gum deterioration which I’m also experiencing is a much greater concern, as it is irreversible.

    Except for the fact that I don’t have a chronic sore throat (my throat will hurt off and on, but the times are relatively far between, and usually of short duration), we really do seem to be having very similar problems. I’d be interested in knowing when/if you are diagnosed, and if any drugs you are prescribed prove beneficial. I have been dealing with my condition for many years now, and was only diagnosed with the chronic EB in February.

  149. This is me! I’ve had my sore throat off and on for 1 year and have suffered depression the past year along with sleeping all the time. I almost lost my job! I have not experienced the skin wrinkling, but have had joint pain, as well as muscle cramps.

  150. well, here’s one more case for ya… chronic sore throat for months, the same array of neurological symptoms mentioned in the original post, gastronintestinal, oral/dental, musculoskeletal (pronounced leg weakness/hip “looseness” in particular), etc. i doubt the general anxiety diagnosis somewhat as i’ve had anxiety in the past without any such array of physical symptoms- general pain, etc, yes, but not chronic sore throat, severe memory problems (i was particularly struck by the mention of spelling problems as i was always naturally a meticulous speller- for the first time in my life now i’ll find myself having a hard time spelling a word.)

    also, i’m very “exercise intolerant” in that it causes much (and lingering) pain and subsequent debilitation, and also aggravates my breathing difficulties.

  151. For all you upper respiratory or difficulty in breathing person(s) get checked for Alpha 1 anti-trypsin deficency. It doesn’t show up until later in life, but there is a treatment for it…it’s called Prolastin.

    Take Care

  152. Persistent Sore Throat & palette:

    In researching for a solution, I came upon your web-site. I developed a sore throat, sore palette, sore glands around throat, recently had shingles (lessor case due to vacination 12/07 for shingles), also experienced Vertigo this past week. In the past year, I have been treated with Cipro, a mouth rinse that had Tetricline, Nystatin, Hydrocorisone & Benedryl – helped the canker sores, but throat still sore as well as pallete. Even tried Predisone. Had a one week treatment Valtrex for shingles – still no change in the throat & palette. At one point, it seemed that a blister broke in roof of mouth and released a foamy fluid. When I press on the roof of my mouth, it tastes salty. I have also used warm salty water for a gargle – no results. I have not had the heavy mucus in the sinuses or leg weakness, skin or weakness mentioned. I have had this for about one year. I have consulted with an Internest, and two ENT and they provided me with the solutions mentioned above. I am very concerned – do you have a referral in San Diego or Orange County in California that is researching or attempting to treat this conditon? I had vomiting and diarreah 12/26/08 and extreme chills and again in April 08. I thought it was flu or food poisoning. I had a bi-lateral mastectomy 9/04 and all is clear at this point. Had a biopsy of palette 7/2/08 states: “Benign, unremarkable squamous covered mucosa negtive for atypical, malignancy or significant inflammation. It is not possible to determine whether or not a diagnostic sample has been obtained. Clinical correlation is recommended.” Sample of soft tissue was 0.5 and 0.3 cm.

    Had shoulder surgery in June 07, and anethesologist accidently lacerated the fendulum underside of tongue that required 3 stitches. The mouth was very sore & I had white canker type sores the next day following surgery. Could the condition I have be an infection from hospital environment or injury to the tongue? Feel free to e-mail me with further information. Thanks

  153. First, I’m sorry for all you have had happen to you. That is all very traumatic physically and mentally. Have you been evaluated for abcess in your sinus’ with a CT or MRI??? Have you had culture of fluid or swab of ulcers in mouth? You can develop”in hospital” infections. Be tested for MRSA (get blood cultures and swabs of all sores) My I sugget your nearest Mayo clinic? In the mean time try to get rest, decrease stress, good diet and exercise or meditation. Three-Lac for over growth of yeast infection and echinecea with goldenseal for immunity (in tincture form). Good luck..

  154. I believe it is a combination of virus that weaken the immune system. CMV, HPV, EBV, HSV 1 and 2. The combination is more than the immune system can handle and causes yeast and fungus. Try Diflucan, this will help you feel better and eliminate the sores. Take 100mg per day till sores are gone then a low dose daily. 20- 50 mg every other day. Take Acyclovir to slow the progression. Take selenium, magnesium, Lysine, Alpha lipoic acid. No dairy or eggs. Get your liver enzymes checked. These drugs are toxic. There sure apears to be a lack of interest from the medical community to find answers or provide treatments. Give some of these doctors, scientists and their children the virus and you may start to hear of treatments and solutions. No one cares till their life goes from great to shit.

  155. You may also experience diabetic symptoms. No sugar, no corn, no soy, easy on bread and rice. Lots of vegetables helps. Raw Broccoli for lungs, vegetable soups, Sour krout all help. It has the symptoms of Candida but Candida usually means there is something else wrong. Get HIV test to be sure. Reduce your stress as it makes it worse. Bacteria, virus and fungal infections continue to mutate while doctors are at least ten years behind the curve. It could be some other undiscovered virus or they know what it is, but don’t have a treatment. Vitamin B12 also helps. It’s passed through body fluids just like hiv. BTW, don’t let them tell you that cancer is not contagious. They are just starting to realize that HPV results in cancer and is passed easily. It causes throat cancer and most likely all other forms depending where it spreads. No one cares about your life but you. We are living in a religious right society and if you got sick, it’s probably your own fault. That is the mentality.

  156. Hi,

    I’ll try to give the short version here, simply because I am not prepared to give the long version (nor am I currently willing to share).

    I belive that I am sick with the same affliction listed here. My symptoms align very closely, but with some subtle changes that my own physiology has thrown in for my own torment.

    The biggest problem is that the majority of the people that “become sick” around me only have a fraction of the symptoms. GOD, I WISH I WAS THEM.

    So, for me it is “Invasion of the body snatchers” all over again … “You’re sick! No I’m not! Yes, you are! There is no sign of infection! Time for the anti-psychotic meds!”

    Okay. It hasn’t gotten that bad, but I know that most of the populace around me has the “mildest” of infection of this “stealth” virus, but NOBODY SEEMS TO SEE IT!!!

    At first I realized that I was sick. Then I noticed that my workplace was sick (the source). Then I noticed that the public around me (fast food joints, supermarkets, pedestriants, etc) all had the same “zombie” anxiety sickness.

    I’ve tried to get several doctors to get to diagnose my ailment, whatever it might be, without success … “You’re healthy. All of your results come back normal.”

    This diagnosis I get after feeding them my 5 minute long schpeel of everything that has been afflicting me for THE PAST YEAR.

    I’m not sure if I want this posted … probably more so looking for a dialogue.

    I can’t seem to get *any* recognition/support

    It seems like when I try to go to get treatment, I have to be ready to repell the onslaught of anti-depressant meds that the doctors want to send at me to “solve my problems.”

    REPLY: Thanks Asklepius for commenting. If anyone here has any advice for Asklepius, please comment below, or go directly to his web site here, which details a very similar set of symptoms to the ones listed on this site, and may well result from the same virus. – Hip

  157. This does sound like a typical presentation of M.E. I have had this disease since 1984.

    The solutions mentioned by some of the contributors here are typical suggestions given to people with ME (such as Candia). Tried that in the late 80′s.

    Sadly, they don’t work.

    Diets and drugs – done the lot in the last 25 years.

    My illness was sudden and the sore throat so bad my breathing became impaired and I was admitted to hospital.

    It’s been a tragic and immense disability for all of my adult life.

  158. I have the same symptoms as the author of this website, and I’m 100% sure that it was contracted sexually. Some of the other people who are posting to this website may or may not have what the author is describing, but I have been dealing with the exact symptoms for years. The medical community needs to wake up and start listening to their patients. There is a STD out here that they are not aware of, and the sooner they figure this out, the better off we will be. So, to the author please keep us informed!

  159. Frustrated is 100% right. I am struggling with the same problem and I am SURE 100% I have contracted it sexually.

    Kind Regards,

    Edward

  160. I’m really surprised after reading all the posts on this site, that very few have mentioned whether they’ve had a tonsillectomy. With chronic throat infections most Doctors would logically advise to have your tonsills removed. The few I’ve seen that’s the first thing they say. For myself, I’ve had recurring Strep (C) over the past year, about 5 positive cultures, and 5 negative cultures.

    I also have many of the symptons outlined on this site. The most troubling is the chronic post nasal drip, that began 5 months ago, and is a daily, even hourly problem. EVERY DAY. Never had post nasal drip in my life before, or any sinus issues. Also, have had recurring thrush that have showed in throat cultures.

    So it would be great if more people please indicate whether or not they still have their tonsils? And if you had yours removed could you indicate if your chronic sore throat subsided. Also, anyone else having all these postive Strep Cultures (the unusual Strep-C type?)

    Thanks…

    (30 something male formerly of excellent health)

    REPLY: Thanks for your comments and suggestions Brian. The thing about this pathogen (which is probably a virus) is that it rapidly disseminates throughout the whole body, particularly within the gastrointestinal tract, and the brain / nervous system. The chronic sore throat symptom is probably the least of our worries. So even if having a tonsillectomy may possibly help (though these days, such surgery is not so readily performed), it would probably do very little to fix the other symptoms, such as memory problems, emotional and motivational lassitude, the weak legs, wrinkling skin, weak digestion, constant bowel gas, etc, etc. In fact, only about 25-30% of people with this virus get chronic sore throat. Constant stuffy and runny nose is more common, manifesting in about 50-60% of people with this virus, but again, this symptoms is not a great problem in itself. By contrast, nearly everyone experiences depression, loss of motivation, loss of interest in things in general, rapidly weakening memory, and significant mental and physical fatigue when they contract this virus. These mental symptoms are the real problems. – Hip

  161. I am male, age 36 from Greece, i have the same symptoms from 2005, exept my skin is more like psoriasis in my hands and nails. All start when i get gastroenteritis and continue until now. I quit my job. I take xanax and others.

    I also have up-down periods.

    Please e-mail me if you find anythink.

    Sorry for my enlgish.

  162. I going through the same thing …..I know this sucks but the best thing to do right now is to live a better life style ( I know easier said than done ….but working out has helped me a lot)

    If it is indeed some type of fungus check out this free website what do you have to loose

    http://www.candida-cure-recipes.com there are foods that will help with the brain fog, circulation and so on. I hope this has helped

    Love and Peace for all

  163. I have had a ‘mysterious’ sore throat for nearly 2 years now, along with the usually accompanied by a sore on my tongue, or roof of my mouth. No skin wrinkling.

    Like another posters, I am certain mine is sexually transmitted though I can’t find a doctor who will pursue this line of questioning without shrugging. Today, I had breakouts on my face and chest, not a rash, but looking like pimples. I have had HSV 2 for 20 yrs. without passing it to a partner, though my last partner of four years was HSV 2 positive as well.

  164. It sounds to me like you have chronic Lyme disease or perhaps some other chronic disease like Valley Fever. Both diseases are resistant to antibiotics. Lyme disease is known to cause chronic sinus infections, joint pain, and connective tissue problems.

    Valley Fever is a fungus and would not respond to antibiotics at all.

    There are also other stealth cell wall deficient bacteria like Chlamydia pneumoniae that can cause a lot of respiratory problems.

  165. http://www.candidafree.net/index.htm

    I think you should all check this out.

    I’m sure you will find that most, if not all of you are suffering from Candida.

    The list of symptoms is pretty crazy.

    I have like 75% of them.

    I started taking Candistroy, milk thistle ( for liver ) and Garlicin which is amazing.

    I just found this other product today that ” seems” to be GREAT, I’m not sure though. It is called Threelac

    The testimonials are quite impressive.

    Good Luck to you all.

  166. Hello,

    I found your website through a search that I did for – constant sore throat. I have almost all the symptoms you list. I have had it off and on for years. I do appear to have very bad allergies. The allergiest wants me to take allergy shots, but I am worried about injecting myself with what I am allergic, too. And it takes up to 3 years to even see if it will help.

    I did work on a cruise ship for a year, and it seemed to make it much worse – I had several infections during the 4 months on the ship. I seem to have more concerns – left hand is swollen, and wrist hurts as well recently. I have this almost constantly now, as far as the sore throat, ears hurting, coughing, etc. I have it now, took antibiotic, sometimes have to take prednisone (small dose for only a few days), and several antibiotics; taking several antihistimines, decongestants, quafinisen, etc.

    I would be interested in more information.

    Thanks,

    Susan

  167. in my case i have found that there are two independent

    problems. 1)an initial infection which is not completely eradicated from the body or the immediate surroundings

    of the individual. 2) A “bad house” situation where dirty

    air conditioning or heating ducts, carpeting ect. creat a

    stress load so the infection can come back. A uv light,

    a hepa air cleaner , or an ozone generator properly used,

    might help to do the trick. Also do not forget your car asa

    source of germs.

  168. To Brandon, So glad there is someone else who has gone through candida infection.My symptoms are horrible and am hoping to get better soon.Im going through what seems to be a die off stage which seems to be lasting forever.Also have contracted a childhood virus that wont go away causes the candida has the immune function so messed up.Please if you have any advice it would be greatly appreciated.Much thanks and god bless you all!

  169. I am intrigued by your description of this condition as “wrinkly skin virus.” I have had many of these symptoms myself — sore throat, fatigue, muscle pain, mental fog. I never noticed that my hands do seem quite wrinkled and look older than they should! My gums have also receed. I tested positive for Epsteing Barr virus and parvovirus with high IgG levels. On a day I felt a “flare” of symptoms, I tested positive for Herpes 6. There seem to be more people than ever before with this condition — hopefully we can get an answer soon.

    REPLY: Thanks for your comments, Jenny.

    Hip

  170. I forgot to mention that I did find a very helpful treatment protocol from a physician in Florida. His approach is to use antivirals (Famvir or Valtrex) along with food allergy testing. I tested positive for over 10 food allergies and when I removed them from my diet I improved immensely. The physician’s name is Dantini and he has a website. I hope this helps!

  171. this past weekend my head started to hert. that night my family were goig camping so i tagged along, about anhour latter my thoat started to hert and continued though the next day. th next day my mom took me to the doctor at 11:30.the doctor testedit for strep thoat and it came back negitve. the doctor said that he wan’t surpirsed.when he looked in my thoat he could see tiny blister in the back of my thoat. he gave me a noming medicane to help the pain, he also told me to take 1 tylonall and 2 ibprofens every 6 hours. i’ve only been taking the medicane about 2 0r3 days but after reading this story i am kind of scared andi hope that it doen’t get that bad.

    REPLY: Don’t worry Samantha, you probably have just a regular sore throat, that will go away in a week or so. – Hip

  172. I feel a little bit better knowing someone else has the same symptoms as me and I am not overreacting. When I was pregnant with my daughter in March 2006, I kept getting common colds. I had 3 while pregnant with her, and now I have them constantly. Now nearly 2 and a half years on I am so exhausted, depressed & anxious

    I can relate to everything you mentioned, from the lack of sex drive to the wrinkling. But this has occurred around my eyes, not hands. I have had 3 chest x rays, numerous blood tests, Heart monitoring, urinary test, The only thing that they could tell me after all that was that I may have contracted glandular fever in the last 3 – 6 months. But also noted that it may also been contracted when I was a child. ?????? So what does that tell me? This is all I seem to get from doctors, and yes that is all they want to do is prescribe you with antibiotics and no research it. It seems that the symptoms are getting more and more common with people, all around the world. (I am in Australia!) My Mum has it, my husband and my daughter. They picked up that my liver has been damaged, which I am going to have an abdominal ultra sound done tomorrow.

    But it does not seem that promising, when it come to a diagnosis. I am scared witless, and this is not helping the anxiousness or depression or the weigh loss. I am 47kg and I keep losing weight. What do u think about seeing a homeopath? From what I have read it sounds like it could be worth a shot.

    Thanks so much for taking the time to express your worries and getting out there with your information. If ever you do find out more info, please contact me.

    Kind regards,

    Kristin

  173. Sorry I forgot to ask anyone if they have had severe hot and cold sweats? Some days I have to put 4 layers of clothes on and a blanket. Stick my heard under the blanket and wait for it to go away or I fall asleep. Could this be bad circulation? My friends Dad gets it too, but his was caused by contracting a bug on the operating table, which is in his blood and there is nothing he can do about it, so he has been told. And it seems to be happening more and more frequently.

  174. Hi Kristin,

    In the early stages of my illness (the first 6 months), I would get cold sweats from time to time. Actually, the initial onset of the disease was marked with severe night sweats and shivering which I remember very clearly. After that the cold sweats (when they occurred) were generally followed by 2-4 days of fever, diarrhea and weight loss.

    I am going on 3.5 years now and my energy has returned for the most part and I can’t remember the last time I experience cold chills or a serious fever. I do, however, still have the dental problems and mental lethargy/mild depression that have been discussed in this forum.

    If you have any more information on this “bug” that you think your friend’s dad and others have contracted, i would be interested to hear about it… specifically if it was identified and diagnosed by doctors and you know it’s specific name.

    Thanks for sharing your story,

    Steven

  175. Hey all,

    I’ve been tackling the same thing as everyone else here (a little over a year now).

    Here’s what has worked and not worked for me (your mileage may vary):

    - Allicin : no noticeable improvement

    - Omega 3-6-9 : a website i found suggested mega-doses for CFS. I believe that this did boost my energy level (unfortunately not back to normal levels).

    - Probiotics : Tried to treat my symptoms via cadida method. No improvement (continued mucus, brain fog, lethargy, etc).

    - Valtrex (Valacyclovir) : Antiviral for targeting specific strains (herpes, etc). No reduction of symptoms. (I was hopeful for this).

    My Theories and Speculations …

    I used to think that the Borna virus had made the leap from animals to humans. I’m not sure if I believe this anymore. I was thinking of trying amantadine to see if it has any effect on my symptoms (doctors have noticed that this antiviral has had some anti-depressant side effects suggesting that a virus is responsible for some cases of depression).

    I am now very interested in Dr. John Chia’s work in stomach viruses (enterovirus) and a link to CFS (http://press.psprings.co.uk/jcp/september/cp50054.pdf).

    Cheers.

  176. I too have alot of these symptons. I live Alaska & fairly healthy. I recently started getting throat issues & my Dr also suggested acid reflux drugs which is total crap. I know that’s not it. I wonder if this new virus is a result of the new meds they use to control the H.I.V. virus in people? Is it possible that the new anti-viral drugs are creatiing new respitory viruses in individuals who are HIV positive? Is it possible for these to transmit in another unique form? Anti viral medicine is not the same as anti-biotics, although bacteria can grow immune to any and all antibiotic medication. Is it possible for a virus such as Aids to jump to an airborne type virus but not be as strong as a full on infection? Is it possible that the anti-viral meds are just creating more stronger virals?

  177. I think Mike makes a good point, We should do a poll of people who post here asking them if they are around people(Within 4′ or so with NO phsyical contact , on an on going basis) whether or not they have 1. Herpies 2. HIV 3.Mono. 4.Other. ect.

  178. To Mike and Steve,

    I have described my story on this site. I have had lot of symptoms are in medical literature as pecurial for HIV infection. I have also no doubts I contracted it sexually. We can share our knowledge. Please contact me at: edward_mazur@onet.eu

    Take Care

  179. To clarify my post above, when I said they, I was refering to people (friends, co-workers)around the people that post here that are normally healthy with no STD’s . It would be interesting to see if a common pop’s up in the data.

  180. I can’t believe I found this. I’m a bit confused as to what this is or how we get relief from it but my poor husband has been suffering with “something” since January 2008. Started out with the fact that his throat felt like it was closing, he Could Not swallow anything (He lost 55 pounds in 4 months). Dr.’s said it was sinusitis. He was treated with antibotics. Then told it was Reflux..given Nexium. Had surgery for sinuses. He has had barium swallow test, HIDA scan, CT scans, blood work out the waa-zoo, endoscopy (the one where they look at your stomach?), the one that goes up your nose and down your throat, a colonoskpy, you name it, he’s had it. He had throat pain that brought him to his knees, burning palate, constant and severe post-nasal drip, stomach pain, headaches, muscle twitching, now there is constant fatigue and of course depression has set in because he has lost all interest in “life” (and we just had a beautiful son in APril). He has not had some of the other symptoms so I don’t know if this is the answer we are looking for or not. ALL doctors are telling him this is all “anxiety” related which infurates him to no end. I’m going to print this off and hopefully it will give us a direction to find an answer. DO you think this is what he is suffering from?

    REPLY: Hi Stacy

    I am really sorry to hear about your story, especially when you are just starting a family. In answer to your question:

    Whether your husband has caught the same virus described on this site, I am not too sure. It could be, but nobody I know that caught this virus has suffered throat pain with their sore throat (only chronic joint pains, and stomach pains).

    However, it seems very likely that your husband has caught some kind of bug, and so you really need to see an infectious disease specialist, preferably a good one at a university hospital, or perhaps even the Mayo clinic. Your husband should be tested for viral infections, bacterial infections, mycobacterial infections, fungal infections, toxoplasma, toxocara, etc. A good infectious disease specialist will test for a variety of infectious organisms that might be behind your husbands symptoms. Various types of infectious microbes can cause the kind of symptoms your husband has. You and your husband might want to consider whether he might be in regular contact with some toxic chemical (through his work, in the garage, or garden), though I think this is less likely.

    As for medical diagnosis, your average local doctor may not have the expertise to deal with this situation, and will often just try to treat each symptom separately. This may be helpful, but certainly does not get to the root of the problem. For example, in your husband’s case, I guess the doctor diagnosed that he has Generalized Anxiety Disorder (GAD), and perhaps the doctor prescribed a drug to reduce his anxiety. Such a drug may help, but it does not explain why the anxiety suddenly appeared in the first place.

    I understand why your husband is annoyed when he is told all his symptoms are “all anxiety-related“. But in fact the doctor’s words are kind of correct, in the sense that his myriad physical symptoms do co-arise with anxiety. “Anxiety-related” does not mean that anxiety is actually the CAUSE of his other symptoms; just that his other symptoms go hand-in-hand WITH anxiety. Many viruses and pathogens can cause both the symptoms of severe anxiety, as well as the other symptoms your husband has.

    Sometimes a doctor might not want to frighten his patients by saying they have a virus, and so will classify all their symptoms as Generalized Anxiety Disorder, without going into the deeper causes. And sometimes, a doctor cannot know if the anxiety is caused by a virus, or another cause.

    In reality, the chances are that pathogen that your has husband caught is causing both the anxiety and his other symptoms (the sore throat, muscle twitches, stomach problems, etc).

    So if you want to get to the bottom of this, you should start by seeing an infectious disease specialist. You may be lucky, and they find what your husband has, and offer an anti-biotic / anti-fungal / anti-parasitic drug to eliminate the infection. On the other hand, they may have trouble determining the nature of the infection (since there are thousands of possibilities), or may have no effective cure for it. But you should at least try to find out what it is.

    I hope this helps.

    Hip

  181. Hi Staci, we/I feel your frustration, Honestly the CDC should check on this , -maybe they have already, Anyway, let us know if anyone else in your family gets the symptioms, Thanks, Steve.

  182. Hi Staci, your story sounds like a lot of other stories around here so it is quite possibly the same infection. For immediate relief, there isn’t much available. For my stomach pain I’ve used abdominal massage, peppermint tea, and lots of anti-nauseants. My gut is cramped most of the day and night thus making a normal life quite difficult. The doctors that I have seen suggested I take anti-depressants for my stomach situation. Well, at first I did because I did feel severely depressed. After a while, the depression seemed to lift, but I still had a brain fog/disconnected-feeling similar to depression but not the same. Well, my stomach pain continued, so I decided to switch from the perscription anti-depressant and anti-anxeity meds that I was on for St John Wort (I wanted to be off of those meds because of the negative stories I was hearing about SRRIs). Well, long story somewhat shorter … I’m still sick. I still have a weakened immune system. My body has rebounded a little … I’m able work on jobs around the house and get myself into work. One of the biggest challenges I’ve had is resetting what is “normal” in my life … becoming accustomed to constant pain, fatigue, poor memory and mental skills, and hobbling around. As for the anxiety, I now basically try to ignore all of the “warning” anxiety messages that I am feel.

    I am seeing a lot of people becoming sick around me, and the doctors not finding an underlying problem … just misdiagnosing the patient and treating the ongoing symptoms. Best of luck.

  183. Hi,

    Please, can someone tell me what is wrong with me? My main symptoms are extreme pain and achiness [especially ribs and spine], fatigue, muscle stiffness and sore throat. My worst symptom is that my spine locks out of place. It feels as though I have no connective tissue left in my upper spine. My ribs and spine crack constantly, and I have to be very careful how I move, or something will “go out of place”. I am only 37, and have had these symptoms for about 20 years, and it’s getting worse. I’ve had many mri’s and xrays, all looks normal. I’ve been to the rheumatologists, and have been told it’s “just” fibromyalgia. I feel that this diagnosis is not correct. Can someone recommend a doctor for me? Thanks

  184. IMPORTANT NOTICE TO ALL READERS EXPERIENCING THESE SYMPTOPMS

    The disorder that is referred to in these pages has been documented and is known as MYALGIC ENCEPHALOMYELITIS (ME). This entity is recognized in England, the E.U., Canada, and Australia. It is not widely recognized in the U.S., as it was unfortunately and inappropriately grouped by the CDC with Chronic Fatigue in the late 80′s for political reasons. After this time, American peer reviewed publications on this disorder ceased. Before this time, peer reviewed publications were produced in the U.S., and are still published in the above mentioned countries.

    This disease is not uncommon, and there are highly documented epidemic and non-epidemic forms going back at least to the 1930′s. Symptomology described in the available research is parallel to what is described on these pages, and to what I have been experiencing myself. Please visit the following pages, and you will understand that YOU ARE NOT ALONE, and what you have been experiencing will finally make some sense. Progress is being made in other countries, however, because this disease is not generally life threatening, it will take political action to bring about progress here.

    ME is thought to arise from viral invasion of the central nervous system, including the brain. The most likely organism is an enterovirus that is related to polio, and in fact, many the symptoms parallel post-polio syndrome.

    Unfortunately, there are no good treatments for this disease, but there are some things we can do to ease the symptoms. Please do not lose hope; you will find the work in other countries very enlightening.

    Peace be with you,

    Jay

    REPLY: Everything you say is totally right, Jay, and in fact I mention in this blog page above that the probable diagnosis of my condition is chronic fatigue syndrome. You will also find many links to CFS treatments in this blog.

    However, certain symptoms of the virus that I caught are very puzzling, including: (1) the skin wrinkling symptom; and (2) the fact that this virus spreads so easily to other people around you, even long after the prodrome; and (3) the fact that there can be “I think I am going crazy!” severe mental state changes even during the prodrome (the first few days of flu-like symptoms). These symptoms make me consider the possibility that this may be something other than CFS; or that there may be a new CFS virus that produces extra-powerful mood changes and the skin wrinkling symptoms.

    There is some very good work in the United States being done by John Chia (for Coxsackievirus/enterovirus type CFS), and Jose Montoya (for CFS caused by HHV-6 virus). Hope this helps – Hip.

  185. Is there a printable version of this. I can’t believe I think I’ve finally found out what’s wrong with me. It started in 2002.

  186. This sounds like several things–all of these can occur together or separately

    Mycoplasma family–there are many strains, especially mycoplasma pneumonia. If it is mycoplasma, it responds well to macrolides–zithromax or ketolide–Ketek. Must be on for many months to clear it up.

    Babesia (co-infection commonly found with Lyme) -treat with zithromax and mepron together for 5 months.

    Lyme disease–google Burrascano 2005 for treatment options.

    Chronic or acute toxic mold exposure.

  187. Hey i feel the same way i have had a sore red throat for about for years i’ve been to the ent and other doctors so many times trying to get answers. I have been tested for disease the results came back negative. I have anxiety and depression and my relationship with my boyfriend is messed up because of this, im always checking the computer for answers. I asked my ent is cancer he told me no, if its not cancer not any other disease then WHAT IS IT thats taking over my body WE NEED ANSWERS! HELP PLEASE

  188. I had my first symptoms in july 2007. That seem to be when I contracted this “virus” or whatever it appears to be. Since then I have suffered all of the symptoms shown on the website, plus more. One particularly worrying symptom is the muscle twitching which never seems to resolve nor calm. I have consitent and constant “wobbles”. The anxiety, depression and lack of verbal intelligence and thought transition has become severe. I am also worried about the rate at which this has happened. I feel like I have no future. And despite the fact im not the only one in this position, I feel so alone. I empathise with everyone who has had to go through tests and failed doctors diagnosis’ only to be left in this uncertain void which I am now. I need help. Could anyone who would be willing to speak to me about this condition please contact me. steven_gallagher13@hotmail.com

  189. Hi Stacy,

    Your symptoms and account of time periods highly resembles what my 14 year old son has experienced for the past year. After numerous tests, nothing has been decided other than the fact he has Chronic Fatigue Syndrome. Interestingly enough, this September, he contacted the Coxsackie virus, with fierceness, and was almost hospitalized from it. I can only deduce that his low immunity to begin with (IGE over 600) brought the virus to him with a vengeance. He has experienced painful joints, upset stomach, fatigue, forgetfulness, and hearing loss. I have been worried for him because I have never seen a kid as sickly as him without having a “diagnosis” that is serious like for example “diabetes.” I am sick of running him to doctors to be told, well, just let him rest, and without looking into any further. My next trip for him is to take him to the ENT and have his tonils yanked. They don’t serve him a purpose as it is.

    Thank you for your website.

  190. I posted earlier on this site, experiencing many of the same symptons outlined by the author for about 15 months.

    My question is, has anyone been to the Mayo Clinic with these symptons…?

    I’m going to schedule a phone appointment with the Mayo clinic in Arizona & see if I can be accepted there as a patient.

  191. I am glad that I have found this website as this is the 1st time that I have found people who have the same symptoms or medical problems as me. I am unsure whether I have the same illness or virus as everyone, but the symptoms stated on this site are the closest I have to anyone I have ever met. I have also been past from GP to Consultant to Neurologist, had numerous blood tests and scans and been given the diagnosis of either anxiety – which is madness or Peripheral Neuropathy but I am not Diabetic. I simply have something I am yet to get a definitive diagnosis for.

    My problems started in late 2005 I began to experience pains just below the lower right side of the rib cage. I also began to have night sweats – not feverish or shiverish but enough to recognise as being unusual. I then a few (2-4 weeks later) began to suffer with a sore throat and slight headache, this gradually progressed onto what I thought was a cold/flu like illness which then developed into a slight cough but with real heavy nasal congestion. I then experienced a rash that mainly appeared on the hands and was not spot like, bumpy or scaly. This appeared mainly on the hands and after years of searching the internet and viewing the image on this site is the closest resemblance to what Hip experiences and calls Mid-Dermal Elastolysis. It was a pink/reddish colour and not on the skin but under the skin – again just like on the image displayed on this site. During this time I also had a complete loss of appetite and approximately a week (within 4-6 weeks) later I was bed ridden with a flu like illness, that left me heavily congested (again the congestion was really heavy and visible from back of the mouth/tonsils), sore throat and a dry mouth/lips that was incredibly dry and sticky – I say sticky but there was no saliva production. It was only weeks later whereby my symptoms improved.

    Initially my symptoms were:

    · A Flu like illness with a slight cough but heavily congested. The congestion was visible from the back of mouth and had a constant flow of mucus and needed heavy noseblows to clear.

    · Underskin Rash alike Mid-Dermal Elastolysis – that was not bumpy/scaly or spot like, but a rash that was a pink colour mainly on the hands with an occasional/random appearance on the forehead.

    · Loss of Appetite.

    · Joint/Muscle pains in the knee and ankles.

    · Incredibly dry mouth/lips (cold sores looked possible, mouth dry and sticky with no saliva production.

    4 weeks later:

    · Slight/Dull Pain in upper right rib cage (just below breast) with slight bruising, as also the same on the left side a week or so later – this I feel was the lungs becoming infected.

    4-6 weeks later

    · Glands became swollen and aching on both left and right hand side of the groin, in the armpits and neck.

    · Pains in lower left hand side of stomach just below rib cage.

    · Ongoing Back and Leg Pains – sometimes brief shooting pains

    Most of the above symptoms subsided and improved approx. 2-3 months later

    3-4 months later:

    After 3-4 months the tingling began (Paresthesias), as also numbness firstly on the hands, legs and mainly the feet and then it moved to the face/head. At the same time the Muscle twitching started again mainly in the legs and then throughout the body such as the arms and chest. It is then that I then became confused and forgetful both at home and at work. For example, I would forget someone’s name who I had known for a while as also forget to spell words and not know how to make the easiest of calculations. Another strange one is that I would mispronounce words and say a word like “asking” and actually pronounce it “basking” – this is ongoing.

    Over the last 2-3 years:

    I have experienced ongoing Tingling, Skin Crawling on hands, legs and in the feet. The skin crawling has now progressed to all over the head. After a period, if the crawling is in the feet then the feet turn cold and then hot as also the legs at times. I also have had occasional numbness. I am also experiencing ongoing Muscle twitching in the legs and also the trunk. I am also experiencing leg weakness and my balance is not right as I become unsteady even standing in a queue and when walking feel as though my legs are about to collapse from beneath me – but I have no muscle wastage which my symptoms would suggest. I also tend to trip at times and kick my feet into the ground. My eyes also sometimes become bloodshot. I also suffer from periodic eye twitching in both eyes.

    Symptoms I am also experiencing are:

    - Tinnitus – either a whooshing sound or ringing sound in my ears.

    - Vitamin B12 deficiency – I also experienced the white tongue (geographic tongue) which is a symptom of Pernicious Anemia but I have had blood tests that show no Auto immune disorder.

    - Floaters – either black dots when looking at a blue sky or a squiggle or group of squiggles that I can see in certain lights when looking at lights for example

    - Periodic Sore Throats – this is not constant.

    - Occasional Stitch

    - Occasional Jaw Pain – but it’s as if it’s the gums that hurt – my dental hygiene has never been this bad.

    - Occasional short sharp stabbing pains all over the body including the eyes.

    - Occasional Tongue Pain and the tongue has sometimes bled.

    - Tiredness – ever increasing fatigue and tiredness.

    From all the above I am still to this day experiencing skin crawling, muscle twitching, balance problems and continue to become confused and forgetful to the point where I feel dementia like.

    So your comments to my posting are most welcome.

    REPLY: Thanks for this well-written account of your experiences and symptoms. What clearly comes across in your account is the progressive nature of this virus. You mention a continual increase in fatigue, and detail the arrival of more and more symptoms over months and years. These progressive manifestations are very characteristic of the virus I caught. Many viruses create an initial illness and fever, which then slowly heals. But my “chronic sore throat virus” is unusual in that it never heals, and often slowly gets worse over time. In addition, since your symptoms have a lot of overlap and similarities to the symptoms described in this blog, I guess it is quite possible that it could be the same virus. Regarding your back pains: are these in the kidney area? Some people have kidney aches with this virus. – Hip

  192. Hello Hip,

    Well my sore throat is not ongoing but periodical/fluctuating as are most of the symptoms other than the all over body skin crawling (legs, chest and face/head) and muscle/eye twitching. The pains I have are currently not extremely painful but are reoccurring and a dull pain. And I have no real understanding of why they happen. I am still confused and forgetful.

    As for the kidney pain, I am not sure it is kidney pain but the position suggest’s this. One point I didn’t mention was that I also experienced spots in my mouth at the time of the flu episode. They are also not pus producing or blister like but simply 2 spots on the roof of the mouth which according to Merck is Infectious Mono/EBV or a blood infection. I also suffer an increase in mouth ulcers but this is caused by the B12 deficiency supposedly. But I’d like to know what caused that as I’ve always had a treaty good diet/eating regime.

    I have had been seen by DRs, Consultants, Neurologists and had numerous (blood tests and MRI scan) tests to either elimate possible causes or establish the cause of my symptoms. Any diagnosis made has been neuropathy or anxiety related – which I do not believe. As it all started after my bout of flu and all the symptoms followed after.

    So if there is anyone out there that could make an intelligent suggestion of cause I’d like to hear it.

    Neil

  193. Hi NeilW. Great explanation of symptoms. Totally what I have. Thankfully my mouth sores have reduced (not sure why). Unfortunately the loose joints and muscle pain seem to be getting slightly worse over time. Anywho…

    Here are some of my observations and theories: This infection affects certain individuals worse than others. In general, most people become sick and level out to a bearable level of crappiness, but “luckier” ones come down with the symptoms that you have listed (a friend of mine has been on disability for 2 years now). As such, doctors don’t recognize what the root cause is. I liken this infection to the first arrival of the HIV virus because doctors didn’t understand what they were dealing with until lots of research had been done. Because this infection doesn’t have the markers for a typical infection my doctors have always railroaded me saying that I am not sick but that I am simply going through “bodily changes”. Another thing that doesn’t help is the multitude of symptoms that come with it. Whenever I tried to be diligent and give a comprehensive list of symptoms to a doctor they look at me like I’m a first class hypochondriac (or worse). As such, I’ve tried to “maintain” a normal life as best as I can hoping that either a researcher will step forward on the news with a discovery/cure or that Hip will find something and share it with all of us. (I also have some other wack-job theories if anyone is interested.)

  194. To NeillW ,Sounds to me like you may be dealing with systemic candida.I have aquirred all of you’re symptoms over aperiod of time.I was diagnosed with candida levels of 5 thousand.Its not an easy fight but its something that has to and can be conquered.Hope this information helps.You can always go to candida free./com.Good luck and GOD BLESS

  195. Hi everybody. FDA approved T-spot.TB test on August of 2008. This means that soon everybody who lives in US can rule out Tuberculosis as a possible latent infection at least. This test supposed to give at least 98% true result. Right now I know only 2 places in the world with this specific test Latvia and Berlin. The most interesting is that this test will determine only antibodies specific for M. tuberculosis not other atypical bacterias.

  196. I am glad I found this site. I have had this since June of this year. I have had candida about 20 years ago and this is very different. I got it from sexual contact. Used a condom but saliva was exchanged. Tested negative for STDs.

    I have persistent sore throat, swollen glands, tingly feeling all over my body, mild kidney pain, brain fog, loss of motivation, memory problems, depression.

    I am an incessant researcher and always looking for solutions. I do not expect to see the medical community deal effectively with this. They are hopeless when it comes to outside-the-box diseases. Eventually they may catch on but the industry is very money driven and patentable solutions are the usual offerings even if they aren’t the best offerings.

    I am post menopausal and was already dealing with PM depression and memory problems but also have been treating them nutritionally. Can’t take SSRIs. Choline and inositol, SAM-e, low doses of lithium orotate are good for depression and help protect the brain. Have been on two grams of VitC a day for years. Lysine helps as an anti-viral. Oil of oregano, olive leaf extract also, and they help fight off other infections.

    I also ran across the use of chlorine dioxide, an oxidizing agent long used as a disinfectant and a bleaching agent. I first encountered it in dental products, but it is being promoted as a treatment for cancer, HIV, malaria (how it got started) and a host of other problems. I did a lot of research online including downloading the materials safety data sheet on it. A high concentration inhaled can kill you but then so can water. It is a gas but is taken in fluid as a drink in dilute quantities. The NIH database has articles on it so it is being researched as a possible treatment. They also found no long term damage after giving it to rodents. It is made on the spot by mixing sodium chlorite with an acid to produce the ClO2 and drinking it in juice. In experimenting I found the best way to take it was to put the NaClO2 in water and drink it followed by some lemon or lime ade – with food in the stomach. The recommended citric acid burned my stomach. There are a lot of websites with information on this and a list on curezone. Here’s a place to start http://mms-central.com/ I have not gotten rid of this weird virus or whatever but the MMS as they call it will knock out a cold in a few hours.

    A new and surprising to me treatment for cancer and persistent infectious diseases is a water extract of oleander, a very toxic plant. Turns out it has been used for centuries in the Middle East and Africa as an herbal cure and is having a rebirth. The water extract carefully filtered to be free of all solids seems to be relatively harmless unless you are allergic or have a serious heart condition. It is a cardiac stimulant. It is referred to as oleander soup and recipes for how to make it can be found online. I have yet to try it, but intend to soon, as it grows all over my neighborhood. http://www.tbyil.com/articles.htm They have a link to a supplier in So. Africa also. People in colder climates are ordering plants from nurseries and growing it as a house plant for their own low cost supply.

    Sambucin, the extract from elderberries has an anti-viral effect and is used in cold and flu remedies such as Sambucol. I don’t know if it will have an effect on this condition but it is worth a try.

    Colloidal silver has long been used as an antimicrobial and is making a come back as antibiotic resistance increases. High quality products with very small (nanometer size) particles in low concentrations are recommended both for effectiveness and to avoid argyeria – bluing or graying of the skin.

    I happen quite accidentally to know the man who is setting up in the US a healing system that has been use for seven years in Europe, primarily the UK. It was developed by two men who suffered from CFS for years and is based on a combination of Oriental Medical techniques and quantum physics. I have been on the protocol for one month and so far it has only helped my sciatica (in one day) but I first saw a description of this strange disease we have on their testimonials dvd so I have hope. http://www.nutrienergetics.com/

    My symptoms have not been as severe as most although I was very sick for a couple of days three weeks after exposure. and for a couple of weeks after I felt rather bad. I have not had a fever, strangely enough. I already was eating a very healthy diet due to my body not tolerating any bad food.

    I recommend that everyone totally eliminate sugar from their diet and any refined and manufactured foods. Sugar suppresses the immune system and causes inflammation throughout the body which causes tissue destruction (aging). When I say sugar I include so-called natural sugars including honey and maple syrup. When sugar molecules hit your blood stream your body doesn’t know or care what they came from. I do use sugar alcohols like xylitol and sorbitol but mostly sweeten things with stevia extract.

    Eat real food, and lots of vegetables. Fresh is best but I eat cooked too. I do eat some animal foods. I also eat spirulina, a high nutrient density blue green algae full of disease fighting phytochemicals. I accidentally cured my candida living on a spirulina diet for three weeks. It can be ordered on-line in powder form (cheapest) and put in a blender drink. Start off easy. The high chlorophyll content can cause a detox reaction.

    I decided to do a parasite cleanse also and ordered some herbs from a place called Humaworm. I didn’t notice that I expelled any parasites, but my symptoms got better while I was taking it. I know that garlic, cloves and cinnamon, all known for their anti-bacterial and anti-viral properties are part of the formula.

    I really do hope this is a natural virus. In my research I have come across some rather disturbing information on bio weapons which are man made diseases that are difficult for the body to recognize and eliminate. Here’s an example : http://www.anapsid.org/cnd/activism/brucellosis-scott.html

    REPLY: Many thanks for those suggestions. – Hip

  197. I am hoping that many of you will check out these possibilities because it gave me back some sanity. I first came across this Web site about 3 months ago in a dire search for what was going on with me. At that time I had had a sore throat for 4 months. I had all sorts of other ailments too, including: dead arms after waking (could not get them to move and could not feel them for several minutes), blurred vision when up close, wrinkling of the skin (especially on the face, hands, wrists, and ears), my tongue was swollen and prickly with a white coating, my back and chest got to be tight (in the 5th month—counting begins at the start of the sore throat), my glands under my jaw were becoming more and more sore, my ears had a constant slight ring in them, my neck was stiff, I had sore back with little mobility, I was tired most of the time, any yeast infections got worse, and I had severe anxiety, depression, and anger outbursts—to the point that was I behaving much like a schizophrenic. I was terrified all the time because I had a newborn at home (now 6 months) and afraid I would pass along a horrible virus, especially since her immune system in her first few months was extremely fragile from receiving a lot of antibiotics in the hospital at the time of her birth and during her first week of life—I can relate to those of you who are mentioning your children. Many of these ailments are due to having a child while others I could not justify (for example the sore throat and wrinkly skin). Now have you noticed, I’ve used the past tense but I want to clarify as well, I’m undergoing treatment for one major issue while treating a few others, so I still have several symptoms but not near to the degree that I had and they are quickly diminishing so I feel that I am well under way to complete health once again.

    I went to several MDs, in which they all told me that my sore throat was allergies which I knew it was not having suffered from allergies off and on all my life. They completely dismissed my other symptoms—except for the depression because I was several months postpartum and after the first few months they say it’s no longer the baby blues and it’s more of permanent situation, so they gave me serotonin sample packs to get me started on an antidepressant program (I never took the pills because I knew that it was more). I even had one doctor roll her eyes at me and another make a joke at my expense when I was telling how I was physically feeling. So this led me to seek help from a highly respected and well-educated acupuncturist for my symptoms (along with an even more well-respected chiropractor/physical therapist). Now before you dismiss this, look at what he told me and what he’s been doing, but just one thing before I get into that, I know I have a Candida issue—have had so for many, many years and when chronic it can produce many of these symptoms on its own. Someone had mentioned Candida in one of the postings and yes, in part. Another issue I knew I had from sorting out a breast feeding issue when my daughter was colic was that my Ph was way too acidic which caused her to be acidic and hence acid reflux for the poor girl. However, this too is only part of the major problem. And this affects men, women, and children…my lymphatic system was back up and shutting down quickly. Every symptom that I have I’ve been told is a side effect of the lymphatic symptom shutting down. I had only 20% functionality of my intestine and my colon was only at 7%. A good acupuncturist ought to be able to tell you quite a bit from just listening to ones pulse (which someone did mention) and they ought to know about diet and what foods will help to

    drain the lymph nodes along with acupuncture points, which therapeutic oils to use, and other miscellaneous remedies—in essence, they ought to like a village medicine man. I knew he was pretty much on the money with the intestines because I did a self analysis of my tongue—not hard to do, go to http://alexandrateagan.wordpress.com/2008/05/03/tongue-diagnoses/ and she can get you started. The thing with the lymphatic system is it weakens your immune system—at the time of beginning my treatment, my immune system was completely shut down. So, with this in mind, viruses and other ailments take hold quicker and is harder to get rid of. It also goes hand in hand with an acidic Ph and an overrun of Candida. Conditioning the lymphatic system so that it’s healthy again takes persistence.

    So here’s the treatment that he began on me: acupuncture, biopuncture, detox (I’m on the Body Chemistry Support System—type it in your search engine and it should pull right up), a colon flush, a lemon tonic for sore throat, a lime tonic for ears, the use of bay leaf therapeutic oil on my lymph nodes, Gan Mao Ling for any virus symptoms and aiding the repair of the lymphatic system, hypertonic and isotonic (we’re using Quinton) to drain the throat and ears as well for mineral support, and the biggest part a partially raw diet—it may sound gross but it contains raw (farmed) milk, raw butter, raw cream, raw eggs, and raw unheated honey. He’s having me take these in in the form of homemade ice cream and milkshakes. These items pull out the lymph congestion, replenish the skin, get the intestines and colon moving again, help rid the body of viruses, and support a detox program, as well with a myriad of other benefits.

    After two appointments, my sore throat went from being sore all the time to sore about 50% of the time, my anxiety and depression was greatly reduced, I wasn’t having anger outbursts—still had anger but not the extreme kind, my tongue cleared up almost completely, the ringing in my ears went away, and my limbs weren’t going numb. Now after 6 treatments more symptoms are falling away: the fullness in my neck comes and goes (depends upon what my lymphatic system is trying to get rid of), my vision is slowly getting better but then again this could also be impacted from pregnancy as it’s a common ailment that may or may not get better until many, many months postpartum, my chest only gets tight when the nodes in my neck swell more, my intestines and colon are beginning to move again (I’ve gained about 7% functionality in both), and even my skin is slowly getting better (I suspect that this will take some time to improve greatly), and my throat is sore only 30% of the time. I am slowly getting around to the Candida thing, I’ve been told by my acupuncturist to soak in a detox bath of 1 cup 37% food grade hydrogen peroxide per tub full (which greatly reduces it’s strength but is an absolute must because this is considered dangerous for its burning properties) as yeast and fungi are drawn out of the body by it and until I get the product in, I’m treating my feet with an ointment that the dermatologist gave me.

    My acupuncturist (and chiropractor, as he brought my attention to my Ph and collaborates with my acupuncturist) is the only practitioner of any kind who has been not only to help me, but also to listen to me. Now the reason for the lymphatic system backing up is mainly due to the c-section and receiving antibiotics for everything that I went to the doctor for in all the years prior and then a major dose in the hospital at the time of my daughters birth, and due to the American diet. Others can have a backed up lymphatic system for other reasons: a compromised immune system, an illness they never really got over, being on any kind of medication (especially antibiotics), diet, immunizations, and many other reasons. Sorry this is kind of long, and I wanted to give a clear picture. This may not be able to help all of you but hopefully it can aid many. I hope it helps.

    REPLY: Thanks for writing about your experiences. The Chinese herbal formula you are taking, Gan Mao Ling, appears to have a good antiviral effect, I read here. – Hip

  198. There is another possibility for many of you which doctors often don’t put on their lists of things to check for chronic illness – gluten intolerance or celiac disease. I discovered that I was gluten intoleranct 15 years ago after seeing the 3 or 4th allergist for chronic allergy problems. That doctor happened to check this, and once I changed my diet (it’s not that hard nowadays – much easier than 15 years ago), my health improved dramatically. The chronic fatigue, sinus headaches, various upper respiratory complaints, brain fog, depression and other things cleared up within DAYS. I am not prone to exaggeration. I felt as if I was truly awake for the first time in my life. Go here if you want to learn more: http://www.uchospitals.edu/specialties/celiac/

  199. Hello to all those that have left their comments on the website – thanks for your thoughts especially Hip, Asklepius and the lady who suggested systemic candida.

    What stands out to me is that there are a number of possibilities that could be causing all my (and our) symptoms.

    However the 3 symptoms that really stand out are: The all over muscle/body twitching, ongoing all over body skin crawling and the brain fog – even the easiest of tasks cause a delay in thought.

    So if anyone out there has further ideas on a cause I’d be pleased to hear it.

    REPLY: Thanks for your comment, NeilW. Those 3 symptoms you mention are quite common in many types of viral and microbial infections, so unfortunately, they don’t help us narrow things down to the culprit pathogen. So it is probably best to focus on the more unusual and infrequent symptoms, such as fine skin wrinkling, sudden periodontal disease, the very powerful anhedonia, the fast incubation period, and home in on pathogens that can exhibit these more unusual manifestations. – Hip

  200. Thanks as usual Hip for your comment. I mentioned those 3 symptoms as they are with me 24/7 and to me are the most thought provoking and frustate me. I have made all the searches and overall it leads me to think either a mystery virus yet to be discovered by a medical mind. Or a gram negative bacteria as this bacteria can lead to the gum disease as in some of those listed on: http://en.wikipedia.org/wiki/Gram_negative

    However alike everyone else perhaps this leads to going round in circles. So again any thoughts are most welcome.

  201. Your not going to beleive this but I have all of the symptom you are describing and a few more, whch also all started after getting an ( upper respatory infection that will not go away ) also if I put pressure on the narrow part of the tongue with teeth and lips I have large white spots. Also getting alot of wrinkles on my face, teeth are alot worse than yours, also brown age spots all over my body. sharp burning spots in my feet at times severre pain at the base of my spine and this one is weird…. twice while sleeping I have woken with complete numbness in right arm AND neck and right side of my HEAD scared me to death thought I was dieing. I am a 45 year old female and have every symptom you have mentionted. I have severe panick attacks now when I feel I am walking on air I am so unbaLANCED. mY BLOOD WORK UP CAME BACK NORMAL AND CT AND XRAYS NORMAL EXCEPT FROM FLUID IN MY NASAL CANAL Caused by this upper respatory infection plz let me know if you have experience any of the others I have 2 children that I do not want to leave. I am not exxagerating when I say I look like I have aged 20 years since getting this virus. I feel run down all the time. Family must think I am a hipacrondriact(?) feet are very dry,white and peeling???????? lost and lonely

  202. hey im 15 years old an i jus keep gettin sicker an dont kno wats wrong i cant stand for very long without gettn very weak nor can i hold my arms up 4 long. i have a constant stomach ache in my lower stomach and am always bloated. my throat and my mouth look just like yours do in the picture. i havent went to the doctor. im scared and dont kno wat to do. please email me

  203. Yes, good idea to share experiences. I have a very similar disease, but with liver pain too, and oedema and swallowing in hands-arms, trunck, eyelids and face. The other symptoms are identical, with the same timing of onset.

    I tried a lot of antibiotics, without results. Has anyone ever tried to take substances with known antiviral power? For example acycolvir, or others? Or anti-HIV drugs? Or for example valproic acid, which is known to be able elicit viruses from hidden status exposing them to the host immune response? And has anyone never tried with a serious antifungal treatment?

    Let me know, please; thank you, and good luck. Bob

  204. I am experianceing most of the symptoms you discribed and have been for years getting worse I’ve had cronic ear problems for years and throat most of the time. I have been blowing blood and also coughing blood too. i’ve been to Dr after Dr. had hearing tests MRI’S C.T.S ETC. I have not worked for over a year and feel like I am unable to fill a job and give them your all. I have neck and right chest pain now. I only have a med card from the county I live in, and the dr.’s are not the best. I don’t know where to turn but I feel like I am looseing this battle.

  205. Wow . . . just like nearly every person posting here I fit in with the same signs and symptoms. Coated tongue, splotchy throat, unexplainable skin conditions, anxiety, pins and needles and the stomach/intestinal issues are crazy active. And like a few mentioned above, I feel this was sexually transmitted. I can pinpoint the date that I was infected. And I will add that in my case there was no intercourse, protected or otherwise involved. Strictly an oral incident. Directly after the “incident” I was informed by my female friend that she has HSV2. Good timing huh. I feared and was tested NEGATIVE for STDs including HIV way past any window period.

    I am a male athlete, so I’m pretty aware of changes that go on with my body and mind. Within 28 hours I had a fever and chills that quickly subsided. But a constant dull pain in my lower abdomen/lower back persisted for a week or two. And then the sore throat, splotchiness and coated tongue appeared and are still present. The soreness in my throat comes and goes. I also developed weird spots on my skin ranging from head to toe. My knuckles became reddish and my hands look like they’ve aged within a matter of weeks. Not to mention the lines and slight baggage underneath my eyes and I just turned 30.

    The “incident” occurred 17 months ago and most of these symptoms are still affecting me. Especially the stomach issues, mouth/throat issues and skin problems. This struck me so quick that it was a major change. I NEVER got sick, aside from a slight cold here and there, and was healthy as a horse. I’m not sure what to do. My doctor claims it’s anxiety and stress causing this and it’s pretty much in my head. So I found this blog and related to what was being said. Thanks for reading.

  206. Thank God for the internet with its wealth of information and the contacts we are able to make throughout the world; because if we had to rely on the doctors to diagnose and treat us, most of us would give up hope for a cure and I’m not just speaking about this illness, but for many medical problems (especially if you are elderly, as I’ve seen the way they treat my 84 yrs. young mother). Anyhow, getting to the subject – I’m an American but I have lived in a tropical country for over 20 years, which I believe made it worse. I don’t have all of the symptoms, but I do have a lot and so do my teen daughters (swollen glands, almost constant sore throats -one even had her tonsils out because of it, acne-like small bumps, sinusitus, chronic fatigue, brain fog, etc.). I believe that many of you have it right when you say you think it is candida – actually fungal because there are many strains. I think I contracted mine in US as a teenager and that it slowly gains ground in different parts of the body: thrush, sinusitis, irritable bowel, vaginal yeast infection, ringworm, athletes feet, boils, ear infections, dandruff, eye irritation, eventually making it’s way to the organs and the brain. There is even a doctor (oncologist), Dr. Tullio Simoncini, who believes it is the cause of cancer due to its presence in all tumors – this could be why cancer runs in families.

    After years of the doctors telling us there is nothing wrong or treating the symptoms with antibiotics – which helps the fungus to flurish, I’ve had to resort to researching for my own cure. Even antifungals have only brought temporary relief. So I went back to the origin of all medicine, traditional medicine – herbs. I’ve researched fungal and herbs extensively, but so far nothing I’ve found actually cures it totally although I must say Dr. Simoncini has helped a lot with his baking SODA suggestion – try it for the gums, tongue and teeth, something so simple works so good, but be deligent. It’s in sinus washes too and helps with that. Also, try gargling with it and sea salt too. Like I said though, I’ve researched and tried many things, but nothing CURES fungal, only relieves it until you weaken and it gets the better of you somewhere else in the body. So strengthen yourself with good nutrition, herbs, and exercise (if possible) so it can’t get the better of you.

    The herbs that I found which helped: aloe vera, black seed (scientific name – nigella sativa), misai kucing (direct translation – cat’s wiskers), henna (external only).

    Chemicals that helped: sodium chlorite (brand name OxyDrops (both internally and externally). Hydrogen Peroxide and Iodine (externally).

    Keep away from sugar and simple carbohydrates.

    My recent investigations into possible cures is oxygen and ozone therapy. Good luck to all and God bless and guide us and give us strength.

    REPLY: Thanks for your comment. You are not the only one that thinks “thank God for the internet”.

    As for complementary medicine, I am a great fan of alternative medicine myself, but you want to be a bit careful about quack cancer cures (especially when the first item on their web site asks for money). We need to always be open minded – but always critical too.

    If you think you may have a fungal infection, I suggest having it tested by a medical professional. They should be able to determine the species of fungus, and provide suitable anti-fungals. And remember, antibiotics usually kill of bacteria in a matter of weeks, but funguses are much hardier and more difficult to eliminate, and often require six months or sometimes years of taking anti-fungals to work. One thing to bear in mind: internal fungal infections are not really contagious from person-to-person in normal social contact, at least from what I have read, whereas viral and bacterial infections are frequently contagious. Now, since many of your family are infected by the same microbe, it suggests you may have something other than a fungus. I hope this helps. – Hip

  207. WOW. This is exactly what I have. In May 2007, I had a bad upper respiratory infection, followed by the sore throat of my life for several months and left dark purple marks on my soft palate. Next I had elevated liver tests and began experiencing pins and needles in my upper body at exactly 4 months. GP thought I had hepatitis, but did not. I got the rash you describe on my inner biceps and forearms after 9 months. Now I get vascular pain in my neck and head. I find it difficult to concentrate and I get brain fog, and I have rolling pain throughout the trigimenal nerve. I went to an ID doctor with the article and says I had an allergic reaction to medication and I’m fine.

    Can anyone suggest a doctor in Houston, TX who will see me and listen?

  208. Hello, I had the very inflammed throat your photo shows as well as the sinus congestion and the stomach/intestinal symptoms about 5 or 6 years ago…but they went away! I experienced these symptoms after being around 2 similarly affected family members…like I said, I had the symptoms, then they went away…but, I developed a bleeding ulcer and was on Prilosec for about a year, and then I developed itching all over my body in ’05 and am now having problems with fiber appearing all over my skin…I’ve had a variety of very unusual symptoms that all meet the symptoms of Morgellon’s disease- I DO believe this all started with the indredibly inflammed sore throat! I have had the plague and my gums have receded. INTERESTING!

    REPLY: Thanks very much for that interesting reminder on Morgellon’s Disease. I closely looked at the Morgellon’s Disease symptoms some time back, many of which are identical to my own symptoms. Some Morgellon’s experts, including Mary Leitao, have read this web site, but no conclusions were arrived at as concerning my condition. And I have yet to observe any fibers appearing on my skin, even though like you, I contracted the initial sore throat over 5 years ago. Nevertheless, judging by the timescale that you have mentioned (5 to 6 years before the fibers appeared), perhaps my fibers will be appearing soon. At least then I will have a definite diagnosis. Thanks for your contribution. – Hip

  209. C.C., excuse me asking this but do you also suffer from prostate trouble? Because I too have almost identical symptoms to you and I can pinpoint the start of it to an oral incident.

  210. Hey Joe . . . no, no prostrate trouble. About the first week or two I had a dull pain like after getting kicked in the groin but that was it. I’m at a loss. I just have not felt the same since that moment. I understand stress can cause a lot of symptoms but I would think that by now everything would be fine.

  211. I’m really happy I found this site.

    I am 29 year old woman from Montreal Canada. I’ve had similar symptoms for the past year now. I’ve seen 2 doctors so far and I’ve basically been told that my symptoms are psychosomatic, that I’m stressed out!

    I have a constant sore throat, constant fatigue, cannot recover from exercise, poor appetite, frequently catch a flu. I also look worn out (dark circles, unhealthy skin tone). I wouldn’t say that I’m depressed, but my lack of energy keeps me from enjoying most social activities. I don’t plan anything on week-ends because I always expect I’ll be too tired to do anything. I like to spend all my spare time sleeping. I feel like I’ve aged 10 years this past year.

    I eat very well and take various supplements (omega 3, multivitiamin, vit C, B complex, iron). I’ve also given up dairy coffee and alcohol for the past 2 months, hoping it would alleviate some of my symptoms. It has hleped me somewhat, but I remain fatigued 70% of the time. I also did a liver cleanse with milk thistle…didn’t help much either.

    I can generally get through the day without intense fatigue if I manage 10-12 hours of sleep, but it is rather difficult for me to sleep that much because I tend to wake up during the night (my sleep is not very restful) and I have a busy schedule.

    I should say I got mono 6 years ago. When I first started feeling tired last year, I thought I had developped it again. I was tested but it was negative. Doc said I should take vitamins and work out!! Although I used to be an avid runner, working out now leaves me completely drained for days, I now stick to yoga and walking (which can also exaust me if I overdo it).

    My gut feeling is that whatever caused the mono was latent for a few years and has now resurfaced…but for some reason nothing shows up in tests.

    I hate that most people seem to think that my problem is psychological. I feel fine mentally, I have a positive outlook on life. And I’m not one to surpress my feelings. I have a good social network…

    There is something physically wrong with me. It can’t be normal to feel this tired at my age! I don’t see how I’ll ever make it to old age if this is how I already feel at 29!

  212. I have every sympton for this and have had so for 2 years i don’t know what to do my throat is absolutely cripling me and i fall asleep all the time and very weak on my joints its awful can’t take much more im 25 years old

  213. I am almost 25 years old and have suffered with a chronic sore throat for probably 3 years. I found this site and was quickly intersted in reading it.The severity comes and goes, but it is always present. I have been to an ENT, have had mono tests, thyroid tests, anemia tests, and even a scope of my throat done. Everything comes back as normal. The drs. told me I have acid reflux, but I know that is not what this is. I have no other symptom of reflux. It’s frustrating to be told I have nothing wrong with me, because there must be something causing this pain.

    After reading the symptoms on this page, I can also check off at least 5 other besides the sore throat. I am not sure what caused my sore throat to start. I have never smoked a day in my life, nor do I drink but maybe once a month, if that. I am busy, but I have severe fatigue most of the time even when I get enough sleep and exercise. I never had a major illness in the past 6 years, however I was in an emotionally abusive relationship for almost 7 years, that has caused me a lot of stress, so maybe that brought about my physical pain.

    I have a dr. appt. this week to check things out again because it has been about two years since I’ve been for this problem, because I was trying to ignore it, so I hope to bring this article along and find something out. Best of luck to all of you who are suffering as well!

  214. I am 38 years old and recently was diagnosed with Mid Dermal Elastolysis. I, fortunately, do not share the same symptoms as most of you but am as curious as to why this rare skin disorder has afflicted my body and what I can do to prevent it from getting worse. I did notice a worsening immediately after my cesarean section with my first daughter and also after I stopped breast feeding at 9 months (which made me think it was hormonally related). A year has passed however and I have recently noticed a spreading to the tops of my feet/ankles and behind my back. I have these fine wrinkles everywhere except for my face and backs of legs. Should anyone have any ideas please let me know. Thank you.

    REPLY: Thanks for your posting, Jennifer. It would be interesting to know if you had any other symptoms appearing, in addition to the Mid Dermal Elastolysis (MDE) skin symptoms.

    From the research papers I have read, not much is known about the cause of Mid Dermal Elastolysis. There are some speculation that MDE is instigated by sun exposure, but this is not backed up by much evidence or solid fact. I am not really convinced. In recent years, medical research is discovering that many disease condition are caused by some type of persistent, low-level microbial infection; it may turn out that this is the case with MDE too.

    What is known for sure is that body levels of the enzymes MMP-9 and neutrophil elastase are much higher in Mid Dermal Elastolysis patients. This is perfectly logical, since MMP-9 and elastase both dissolve elastin (elastin is found within the elastic fibers of the skin, as well as other connective tissues in the body). As the elastin is dissolved by these two enzymes, the skin looses its elasticity and develops wrinkles.

    In an effort to try to lower the MMP-9 and elastase secreted in my metabolism, I started taking some herbs and medicines which help to block the production of MMP-9 and elastase. I believe these herbs and medicines have improved my skin a little. In case you are interested in trying this, some good neutrophil elastase blockers include: EGCG (a green tea extract), Boswellia serrata herb (a good one to buy is “5-LOXIN”) and cefoperazone (Cefobid) which is an antibiotic of the beta-lactam class. These are all strong inhibitors of neutrophil elastase, and are used by chronic fatigue syndrome patients to reduce elastase levels. Good MMP-9 blockers include: Ecklonia Cava (this one is highly recommended), chondroitin sulfate, propolis (choose one high in caffeic acid phenethyl ester, such as “Bio 30″ propolis), resveratrol, Korean ginseng, alpha lipoic acid, doxycycline and azithromycin (these two are antibiotics), triphala (an Indian herbal formula), omega-3 fatty acids, and St. John’s wort herb (Hypericum perforatum). I am not sure which of these works best, but most of the dietary supplements are generally good for you anyway. If you learn anything more about this, please let us know.

    I hope this helps. – Hip

  215. This disease may or may not be caused by a virus. It sounds like classic psychosomatic (real definition of the term) symptoms. Dr. John Sarno is an excellent resource for something like this. Medical science would have a name and categorization for something like this if it was a virus, and it would be public knowledge.

    REPLY: With reference to your last sentence: They do. And it is. The name is myalgic encephalomyelitis (ME); and most people are aware that ME is often caused by an enterovirus or the Epstein-Barr virus, as well as other pathogens. My pathogen is a little more contagious than average, however, and infects entire families with mild to moderate myalgic encephalomyelitis-like symptoms, plus the fine skin wrinkles and weak ligaments. Anyway, there are always new infectious diseases appearing. Nature is very inventive. Google Morgellon’s disease for example, which has quite similar symptoms to ME.

    What you should also appreciate is that there has been a long history of the psychiatric profession claiming ME is psychosomatic, when all the most recent evidence now convincingly points to infectious etiologies. This erroneous view, propagated for decades by psychiatrists, seriously set back ME research. Nobody would claim that other neurological conditions, such as multiple sclerosis, Parkinson’s disease or Alzheimer’s disease, are psychosomatic. – Hip

  216. Hi, I have and am experiencing similar symptoms for some time now. I am wondering if some kind of mycoplasma is the cause. Also, if colloidal silver could b effective in healing? Best, Claire

  217. I believe I contracted this virus in 2005, maybe as a consequence of being given imported (from the USA) anti-D blood. I live in Australia. Since this time, my physical condition has deteriorated. I have a continually crawling sensation through my skin along my arms, making it difficult to concentrate on much. After having a colonoscopy to investigate bowel problems, I had a crawling sensation that went up my spine and into my brain. This has since disappated, with the crawly sensation remaining. I would love for my doctor to have the same symptons, so he finally believes me and properly investigates it, instead of telling me it is normal and that I was tired as a result of motherhood. Bloody doctors!

  218. You might find answers on this proboard site.

    Many suffering the exact symptoms you are (myself included) . I am into the wrinkled skin stage.

    A group of dedicated researchers have just

    about pinpointed the cause of this terrible contidion.

    Possibly actinomyces made virulent through fluoridation

    process, cellulosic fiber production for application in

    anything from medical gauze to corn products. Cyanobacter

    used in the process of cellulosic fiber production along with algae is causing quite a bit of sickness.

    Please, come read some of the most comprehensive

    research done about this. Click on the message

    board icon to view all the posts by some fine

    data crawlers who suffer what you and I do.

    http://morgellonsfree.proboards81.com

    REPLY: Many thanks Blue Gene. Very interesting link. Two people on this website, Dashullya and B.o.r.i.s, are also conducting a lot of research and testing testing of bacteria such as Mycobacteria, Actinomycetes and Corynebacterium. Please let us know if you discover anything more. – Hip

  219. Hi, my name is Jules.

    Im a 21yo healthy male (at least mostly).

    I have played basketball since i was 8yo, 3 or 4 times a week, i workout, i walk to and fro work, i drink plenty of water, i am a mentally acute person and study engineering.

    Im also attracted to other males.

    So, about 3 months ago i started having the worst bloody sore throat in my life. It felt like there were fireworks in there. It felt like there were bacterium moving around my throat giving it allsorts of zingy, tingly, scratchy, and outright sore feelings. It felt like my throat was inflamed to a big ball which was foreign to my body. It also felt like saliva/something was refluxing up and down my throat, whatever the vile tasting stuff was.

    I also felt occasional zingy pains in my nerves; specifically:

    1) at the underside of my wrist, where the tendons are there (where the biblical jesus’ wrists were nailed to the cross)

    2) in the head of my penis

    3) at the top of my anus (top of the crack, but more in interior of course)

    These zingy nerve pains were only sporadic and occasional.

    As well as these feelings i had extremely sore teeth and gums. The sore teeth and gums had happened before in times of stress and cleared up (eg. after very little sleep while doing uni assignments).

    Also had lostof chest pain.

    Whatever was in me, seemed to move from the throat to onto the chest (causing congestion/tightness).

    These symptoms made me worry that i had contracted hiv, as not long prior i had a rubber break on me while having random sex with another bloke my age (we stopped immediately, and was only very briefly inside him, i was the top, and i showered afterwards. I only mention these things cos ive read these reduce the risk of hiv contraction, however this is irrelevant as per my future tests). So i was very worried and preparing myself for being diagnosed as hiv. After nearly 2 months of this havoc i went to rpah in sydney and got tested for all the gay std’s including throat and anal swab test, and hiv blood test. I came back negative for everything, hiv, hep, ghono, chlamydid etc. So i was half relieved, however the throat just seemed to persist. Oh i forgot, during these first 2 months i was extremely lethargic and unwilling to do anything, (unfortunately was during exam period). Anyhow, a week after the std results i went to my gp and told him. He said the symptoms i was describing were most probably stress related. I told him i thought it might be mono (my theory after hiv. i was theorizing because whatever i had felt foreign and viral, as if it were pumping through my veins, and not just something stress induced.) and he said if it were mono my glands would be swollen (the day i saw him, the throat seemed to have subsided abit as if it were a clever beast). I told him about the reflux and he was quick to subscribe me something to ease reflux.

    So i took his trust that this will go away. Some of it has. The sharp nerve pains have for the most part vanished. I sometimes get this after typing at the computer and it resembles what i had when i once had sever tendonitis in the wrists from working at a factory. The extremely inflaming volcano of a throat diminished somewhat (possibly after me swalllowing the age old teaspoon of honey remedy for a few nights), however it is still present daily, 3months later. Sometimes it might go for one day and i think im cured, then it comes back. But its been at the forefront of my worries for 3 months now. Also, one other symptom for me is a brainlike twitch, in the left (my left) temple – sometime the throat will relieve and feel cured but i will get twitches/quivers in my brain as if the virus has gone there for hiding. For relief i find vitamin c to be beneficial with sleep, it relieved the throat. Honey releives the throat too. Bloody hell, im 21! I want this to be cured ay. Some symptoms i dont really confer to. I havent experienced a significant increase in depression, moreso the lethargy that i name. However sometimes i feel like it serves me right for me following same sex attractions.

    But i know thats a stupid thing to think.

    Anyhow, it would be beneficial for this blog i think, if the poster lets us know if theyre a doctor or not, i havent read many people saying they are, yet some seem to know alot about it – just so people like me can place more trust in someone the posters with more experience.

    Anyhow, so for me, if hiv and mono are out, altho i havent been tested for mono and im going to go do that soon, there are a few things id like to try.

    - returning sleep patterns to normal (ive been sleeping at 2am and getting up at midday cos of my nightshift.

    - going to the beach aka seawater more.

    - removing a magnetic blanket i use that may or may not be a source of allergies ( started using not long before first symptoms)

    I will repost if i have any progression with my condition.

  220. i forgot to mention that since the onset of this i havent exercised much due to the fact that when i tried i got extremely tired afterwards

    REPLY: Hi Jules. We are not docs here, but a few posters are reasonably knowledgeable on certain medical matters. You may want to start reading a bit about chronic fatigue syndrome and communicable diseases yourself.

    Question: the day your sore throat symptoms first began, how long was it since the sexual encounter you described? Are we talking within a few days, weeks or months? And did you have any more encounters immediately before your first symptoms stared, even just kissing? The reason I ask is to try to determine the incubation period of your pathogen, which can give a valuable clue to its identity. – Hip

  221. i really cant remember exactly (was that long ago, and at that time i thought it would just pass), but no longer than approximately 2 weeks, it may have been a couple of days. but as i cameup negative for all std’s (at least all the major ones they tested me for), what other infectious disease could it be? maybe i should get retested for stds and tested for mono. but after i realised the sore throat, i have had very few encounters (2 i think) in the 3 month period. i spose that didnt help much for pinpointing the pathogen.

  222. As long as i can remember ive always had problems with my throat. It is always getting soar, and my nose is always stuffed up … i thought it was just sinus’s and maybe it still is but… while reading this im starting to think other wise… im hoping its not an Std… because i just recently became sexually active Though i am still a virgin.  But… Alot of the symptoms seem to fall into place… my skin looks alot older then i think it should, and  i havent been able to remember even simple words, getting confused and my knees have been giving out on me my memory has been slipping, ive been oddly depressed for no reason…. I have this wierd red patch on the roof of my throat, and i ocasionally get little red bumps that produce no puss in my mouth. My stomach has been acting wierd and i have random pains… i dont know its all really wierd.

    Is this contagious… can i spread it? the last thing i want to do is spread it.

    And is it possible to get rid of?

  223. I’m not a doctor or trying to be a hero, I am a person who is suffering from this diseases but there is a cure for a majority of diseases that lies within every human being it is called the Immune system ….a healthy (stable) immune system should be able to fight off anything that is bad but something has entered our bodies and is effecting us mentally and physically.

    Believe me like most you this has been the worst stage of my life but when I beat this disease and help the people that I love I will look back at this moment in my life as the strongest.

    Scientist (not doctors) have acknowledged this diseases but it is going to take them some time to truly understand this disease. I can’t wait for them and neither should you….We are human beings and our life has value.

    I truly believe that western medicine has done great things for human beings and has prolonged the lives of humanity but it has also killed many human beings. (There has to be a balance between western medicine and alternative medicine)

    Take cancer for example, when someone is diagnosed with cancer that pretty much means that the persons immune system is not functioning properly but western medicine stands by chemotherapy and radiation which kills everything within the human body (cells) that keep people a live. Doctors are handcuffed today by the people that fund there occupation which they have worked very hard to achieve. (pharmaceutical companies)

    I will be honest I have cried been angry and frustrated and pretty much ruined my relationship with my doctor . But I realized that was the wrong thing for me to do because I need questions answered and have learned to control my emotions better when it comes to my health.

    I am not trying to selling you anything and you don’t have to listen to me, all I am saying is to question and research your health.

    Reiki is a form of meditation that I have found on the net it has helped me mentally and physically

    (its free) http://www.reiki.nu/reiki/reiki.html

    Here is also another website which I feel has the best interest for people

    http://www.angelfire.com/az/sthurston/three_basics.html Advanced Scientific Health

    The greatest disease that effect this world is a closed mind!!!!!!!

  224. its stupid to just expect a healthy immune systme to be able to kill this viruse(s). my immune system was healthy (i rarely ever got colds and didnt see a doctor for years at a time) and now its been overrun by something. viruses like hiv and others cant be just left alone, they need rigorous antiviral treatments. assuming what we have is a virus, we need the medical community to investigate this and not tell us it’s just stress.

  225. That is my opinion if you would like to accept it or not is fine with me.

    But you don’t have to call my opinion stupid I don’t believe negativity has done good for anyone.

  226. i think alternative medicine has its place, as a supplement or last hope when scientific medicine has been exhausted. i just didnt like how u worded that it can be just as effective or it can cure anything. viruses are foreign agents to the human body. And the immune system may not be able or yet know how to deal with super viruses or evolving ones. altho the human immune system is very phenomonal you cant claim it has infinite ability to fight anything, clearly theres scientifc evidence against this – thats what i was calling stupid. and thats a lamens opinion.

  227. I have simliar symptoms, to a mild degree. i get cold very frequently and it takes a long time to cure. i feel a lump in my throat and it pains when i sneeze. i feel moody when ppl are around though i enjoy being with them and i cant hear as good as i used to.

  228. On Nov 4th of this year (2008) I came down with step throat! After amoxicillin and azithrymicin, a culture said I had a bad yeast infection. Now (12/22/08) I have tenderness in the thyroid area and I still have a sore throat. Recent stoll studies (2 mos ago) indicated some pathogens and bacteria that I cannot remember the name of. On top of all this, the anxiety and depression is overwhelming. I am normally very gregariousand outgoing but I want nothing to do do with anyone or anything. I do not want to even talk on the phone. Have not been to my business since late October. I am awaiting results of thyroid scan but I have wondered if this whole thing could be related to bacteria overgrowth or systemic bacteria. This site was so similar that I had to post. I am a 58 year old male.

  229. The symptoms described above are all very common and most likely come from more than one cause, as different viruses have different tropisms, or affinities, for different body systems. One possibility, however, is that the virus in question either attacks the immune system or causes an autoimmune effect. Other possibilities include environmental exposure and primary depression.

    If you wish to continue your investigation, however, you would only be contributing to medical knowledge if you wrote up some of your findings. For example, I am curious about the methodology you used in finding the incubation period of this virus.

    REPLY: Hi Amy. Many thanks for your comment and your question on the incubation period. In answer to this question: Dozens of acquaintances I know have contracted this virus and then manifested its symptoms; for certain cases, I know the person’s exact window of exposure to the virus to within a few hours, and the precise time of the appearance of the pathogen’s first symptoms. Using this data, I have personally observed several times that the incubation period can be as fast as 8 to 12 hours. – Hip

  230. i do indeed feel as though i am suffering from this virus. i have been going to doctors for a couple of years now and leave every time with a new diagnosis and a big list of medicines and treatments to do and take, none of which seem to help/cure the problems. i feel it getting worse…and wonder how far will it go? how can i help it? its taking over my life, i am constantly worried about the disease. i wonder if surgery could help? i finally had a doctor mention that option to me and i am totally up for doing it. let me know your thoughts.

    REPLY: Thanks for your comment, Mandy. If you mean tonsillectomy, these days, this is considered a last resort operation, and there are no guarantees it will help. – Hip

  231. I am delighted to have found this site!

    For the past three months I have had an inflamed throat which is better first thing in the morning but worsens as the day progresses. I have discomfort in my right lung and persistently recurring muscle spasms in my left eye. I have minimal discomfort in my kidneys, but I am aware of a nagging sensation in the kidney areas of my back. I have periods of sudden fatigue and this is often accompanied by an inability to concentrate on even relatively simple thought processes. I have recently experienced visible changes in my skin, I am 53 years old so some changes are expected, but this seems to be a rapid change over the past month. I am experiencing a heightened sensititivity in my teeth and gums and my joints are at times painful, arthritic and very noisy. I do not have much in the way of medical history, in fact I used to Marathon run and have always been relatively fit.

    So far I have been prescribed PPI’s and anti-biotics, to treat gastro intestinal reflux and possible bacterial infection. Neither has made the slightest difference.

    REPLY: Thanks for your comments, Stephen. Welcome to the site, where you will find many people looking for answers to this situation. – Hip

  232. Well firstly thank you to HIP for finding my blog:

    http://morgellonsaustralia.wordpress.com

    How similar is this ‘virus’ to ‘Morgellons’. People suffering Morgs get the “nothing wrong” diagnosis plus the most common one of Deusional Parisitosis! – but all the symptoms except replace the sore throat/nose with skin lesions (although this fungi? we think, does eventually collonate the sinuses.

    I really feel there must be some link between these two ‘emerging diseases’. There are differences although the effects are almost identical. I am also very pro finding a natural solution as these ‘diseases’ are creating so many toxins that any additional ones just overload the organs and your body can’t gain any benefit.

    Another difference I saw was that antibiotics are of no benefit whereas antifungals are… but again the long term treatment has worse impact on the body than any benefit produced.

    I use Pau d’arco bark – make herbal tea. There are many others that have antibacterial, antifungal, antimicrobial benefits. Cinnamon and tumeric are common but very good spices as are cloves. The other we are using with good success currently is an alkalizer powder.

    I wish you all hope and courage to bring this emerging disease to recognition and treatment or least causes.

    peace and hope

    pixiemb

    REPLY: One of the things I noticed with the virus I caught is that it strongly suppresses the immune system right from the start. This leads to all sorts of opportunistic infections: fungal, bacterial, helminth (intestinal worms). One wonders if this is the case with Morgellons also, meaning that many symptoms of Morgellons may be exacerbated by other opportunistic infections. One should perhaps consider the possibility that the Morgellons skin lesions are themselves opportunistic infections caused by immuno-suppression. Both Morgellons and chronic fatigue syndrome patients often have low natural killer cell activity, which may be one of the reasons for the increase in opportunistic infections.

    What is also interesting is the comment above by Anonymous in Nov 2008, who experienced a bad sore throat, sinus congestion, and stomach/intestinal symptoms 5 or 6 years ago. Then he slowly developed Morgellons.

    See also the Morgellons Research Foundation (MRF), Morgellons UK, Clongen Laboratories and the Charles E. Holman Foundation for reliable Morgellon’s Information. – Hip

  233. Hi, I’m sorry you’re going through all of that. One of my closest friends is going through the same but doesn’t ever really want to talk about it. You offer a list of possible viral culprits but do not specify whether or not you have been tested for them. I also do not see HIV on your list. I know I am probably stating what you already know, but HIV induces the immuno-compromised state that would make you highly vulnerable to other viruses such as the ones you’ve listed. The friend I mentioned saved the HIV test for last and, well, that was the culprit. HIV itself does not cause all of the symptoms you have described, but it could offer some closure as an explanation why you’ve come to experience all of this. Have you been tested for this yet?

    REPLY: Thanks for you comment. I am HIV negative, and I tested for this very early on. But there are other viruses that do persist in the body and cause milder immune system deficiencies. These include enterovirus (Coxsackie virus), HHV-6, Epstein Barr, and others. – Hip

  234. Will someone ever listen? Thanks Hip for at least bringing out something I have known for awhile. Mine also came from contact not intercourse and was within the month of contact. This is a health issue and can pass from person to person. This is my story and i don’t have any answers so if you are looking them as of today i have none.

    In Dec 2006 i came down with a sinus infection. I had them a couple of times a year so no problem with going to the doctor and getting antibiotics. It was a general feeling of not feeling good like the flu. I had a CBC and all was normal. I had constant sinus drainage. I tried 3 or 4 rounds of different antibitics. My liver enzymes were up but i had that before so no issues. I was tested for MONO and HEPATITIS. At then the end of DEC 2006 my doctor said i was recovering from mono and that i had high MONO TITERS. I was like great i will take mono. I started having itching on my face. Then the itching covered my body. Also i had tingling in my whole body when i would lay down at night. If i moved it would go away but come back quickly. I had a hard time sleeping now when i use to sleep all night. Ofcourse i was worried of HIV so i was tested in DEC 2007. Tested again in January 2007. Tested again in April 2007. This was the antibody test. I even had the HIV test to see if the virus was in your system not just the antibodies. ALL OF THE WAS NEGATIVE. I have a stressful job, my parents had died with a long stressful part of staying with them during that time, so i was thinking this had to be all stress. I looked for anything on the internet and nothing was found.

    I have had untrasounds and CT scans to see of the slight pain in my spleen area.

    Finally i went to a ENT and had sinus surgery. Why, because your into trying anything that will help. Ofcourse more antibiotics. This seem to help with drainage as time passed but i had nagging symtoms that would just come on me.

    Febuary 25th after the surgury i had an irritation in my mouth. Maybe from where they put a tube but it never fully healed. I tried many mouth drugs and paste from the Dr. Still i moved on. My throat was slightly sore. My ears hurt some. I could see a red in my throat but not as bad as in the pictures. So i used baking soda and salt water to rinse out my nasal passages daily. I also used it to gargle with everyday.

    March 1st 2007 my lips started showing a pale look to them. I was also urinating more frequent and thirsty alot. My eyes were red and irritated alot. Fatigue was really bad in the afternoon. I had another CBC. All in normal range.

    Also i was tested for Lyme disease. It was negative.

    Middle of March 2007 i started feeling pain in my right kidney. Then my left and by the end of the day both testicles. I was put on Cipro and it did not help. after about a week to 10 days it slowly got better. I have more kidney stones from having this. Maybe its from to much vitamin c, or maybe its from this issue i don’t know.

    My legs started feeling week at times. I had a constant twitching under my left eye. I saw a neurologist for the tingling and twitching. He did an enormouse amount of test from LUPUS, SJOGREN’S, alot of other autoimmune diseases and my immune system. All were normal results. I had an EEG test. She said she never seen such strong and normal responses. I also had an MRI of head and spine. All normal except for what i was told was arthritis in my neck.

    In June of 2007 i noticed the exact wrinkle of the skin that Hip shows here. That is what sold me on this and people need to listen.

    September 2007 i was out in the sun. From that day on i have been sun sensative. I saw another doctor and sent me to a Rhumetolgist. He did another round of autoimmune and x-rays since i have had neck pain, middle back pain, lower back pain but only a slight feeling of each. He talked to me about Ankylosing Spondylitis. He wanted to start me on Methotrexate and Rhemcaid. I was like show me why and he really could not. Some doctors are quacks. If i would have listened and it brought down my immune system more where would i be. Please becareful out there with doctors.

    I said i would get another opinion. I went to another in a larger city and she said i don’t see a reason for you to be on it. I saw a third and the same answer was you don’t need it.

    From Dec 2007 til August 2008 i thought that i had this under control and stable enough to kill it.

    From August 2008 i have had the tingling and feeling like the flu but not as bad. It comes and goes. Just enough to let me know its there. I have an on and off again appetite. I now have mouth sores on both side of my cheeks. I have a rash on my face, right side cheek. I have had white spots show up on my face. Also i have more and more brown liver spots on my face. My vision seems to be getting more foggy just like Hips. My eyes are twitching in eyelids now on and off. My spleen area is sore alot probably from working overtime.

    I am going into my 3rd year with it. I have not had the mood swings but sometimes it does seem to cause an issue with quick memory response. I can think about it and come up with it but not a quick response.

    Through this whole process i have used amoxicillan,cipro,zpac,diflucan, vitamin c 2000mcg per day, milk thistle, b12 complex, magnesium, potassium, Valtrex.

    Started Luten, lysien and garlic tablets.

    I know i have had 3 ebstein-barr over 2 years and each one get higher and higher titers. This has to show something for someone who will listen. I did ask to see an infectious disease doctor but they said there was nothing to show that i have anything. From test i am sure. We know our body best. I am a 43 year old male and i was very active in working out, going to the beach in the sun, working outside all day long until i was hit with this health issue. It can bring anyone down.

    I am trying anything and if i find something that helps i will post it. I could go on and on but really just need to correspond with people who want to email back and forth to troubleshoot it more. Hip you have my email so email me and lets cover some more of things in detail.

    I am not sure how bad this will get. Try to stay out of stress. Try to eat right and take vitamins. Read until you are tired of reading on it. Give all info you have or find out on here so we can get something moving on it. Thanks and Thanks again Hip for letting us have this site!

  235. I feel sad to read all of these excerpts. I believe that a significant part of the western population is in this boat. I guess I would be too, were I to relate my physical symptomatic history especially over the last 12 years when my personal life story became increasingly vulnerable and subject to invalidation and meaninglessness. As my calling to face the truth became more figural to me, I was impelled to deal with life- long suppressed emotions that needed to be expressed in order for me to live on healthily.

    I believe that dis-ease stems from a spiritual malady that pervades our post modern culture. The medical community has been deluged by the influx of self- diagnoses via the Internet over the last 20 years. It will take decades to straighten out the chaos.

    I also believe that the vast majority of sufferers share varying degrees of conscious awareness of the universally shared longing for meaning that secretly emanates from our increasingly despairing and individualistic culture. Ours is a culture that prides itself on self reliance and not on familial ties that used to bind them.

    In my dream world that I fantasize about and still long and hope to create, I will live in a close knit spirited community that is above all supportive of each other, open and truthful, and like- minded. I hope that this will stem the tide of the insidious alienation and cluelessness that is infecting individuals one by one without their full awareness.

    I joined a Gestalt Community of believers that helps to inspire me to overcome my physical ailments, and raise my conscious awareness of reality to a level that does not necessarily recognize my physical ailments as pathological, and by losing focus of them, they disappear and heal over time. I recommend that we all read a couple of books, Handbook of Higher Consciousness by Keyes and Tales of a Wounded Healer by Mariah Fenton Gladdis. Lastly I try to remember to remind myself continually that where there is a will, there is a way.

  236. Hello-

    I had a feeling when I contracted this weird illness that there were others out there who suffered from the same thing..and were as lost as I am about how to go about treating it.

    Many people suffering from candida infections seem to suffer the same general symptoms, although I’ve had mixed results in treating it as a Chronic Yeast infection. I wonder, as well, if it doesn’t start with some kind of virus because of the way it acts in the first stages..the same as the flu or hiv.

    I’ve had this illness for over a year now, and the last few months I actually felt better, except for a red, painful, warm-to-the-touch, rash on both my shins. After 2 months of trying to treat that rash, it seems to have gone away, but all the other symptoms returned in full-force.

    The way my mouth gets a white coating, and the throat seems effected- it would appear to be some kind of yeast that lives in the throat and mouth area… otherwise this seems like a very inhospitable place for a virus to take up residence. I did test positive for a rare kind of yeast called

    Rhodotorula Glutinis/Mucilagonisoa. Perhaps people should be tested for this yeast to see if this infection is a common factor.

    Thanks for starting this site..hopefully together we can manifest some answers!

    Philip Record

    REPLY: Thanks for your comment Philip. On the subject of tongue coatings: the type of tongue coating I have is called geographic tongue or benign migratory glossitis. Glossitis means inflammation or infection of the tongue. There is also another type of tongue coating called hairy leukoplakia. If you look at the tongue images in these two links, you will see that there is not much difference between geographic tongue and hairy leukoplakia. Hairy leukoplakia is located more on the side of the tongue, and geographic tongue covers the whole tongue, in a patchy way. Geographic tongue gets its name because the patches look like borders on a map. Of the many possible causes of geographic tongue, herpes simplex virus, varicella zoster virus, cytomegalovirus and coxsackie virus (enterovirus) are the main viral causes. – Hip

  237. I have the same or very similar symptoms as those listed above for 20yrs. now however my contagin level is very high. If someone kisses me they will probably get this thing. I have had the sensation of something stuck in my throat and have constant throat clearing, sore pallet, feeling of swallowing a bottle cap or glass. I’v seen 9 ENTs and 40+ Dr.s with this thing I’ve come to call the throat clearing disease or TCD. Most Dr.s thing I’m nuts but have done loads of tests all of which come back negative. 10yrs.ago I developed severly dry eyes mouth and skin which was latter diagnosed as Sjogren’s Syndrome and within 1yr. I developed RA (I think my immune system went nuts trying to deal with the perminent infection.) I was disabled due to these dieases. I am currently on a monthly .5gm IVIG per 1Kgm body weight. Humira Salagen, methotrexate, Prevacid, Patanase, Nasonex, Celexa, Lunesta, Trzodone and folic acid vitamin D suppliments. They keep telling me I have post nasal drip and reflux disease but this is the 9th time I’m going around this approch and with the same lack of results. I am also trying to approch the candida aspect on my own with three-lac and other yeast killing suppliments which are not working. I can say that I believe I caught this from a person I kissed at a bar, something I thought was innocent. My being contagous has left me affraid to be with others because I don’t want to give someone else a perminent sore throat. The last 2 decades have been quite poor for me as I have battled this thing and I am still trying to find a Dr. who can do something about it. At this point I have kind of come to grips with the idea that it’s not going away and would like to start a dating site for those of us with (TCD my name for it) aka.sore throat/mood virus. I looked on positive singles.com and didn’t find others with this thing. It’s nice to know i am not alone however it would be nice to build a more close relationship with others suffering with these symptoms in the twin cities area. The schedule of events that occured for the author of this site and symptoms that I experienced is almost axactly the same. I haven’t given a full list of the symptoms listed above to the Dr.s I’ve seen because I was unsure myself if they all went together. However starting with sore throat then dizziness then cloudy thinking then motor problems almost exactly the same. Do you have chronic throat clearing?

  238. its sounds like you all got in maybe from mono. and when you have mono it stays in your body so maybe if some of you did your pro and cons you could see what you all had that was the same. maybe that your tonils had this virus in them and it just came back worse and if you got them out maybe it would start to change. but if you can get it from kissing or something then maybe it could be that you all have tonisls and it keep this mono in them and it just go worse and worse over time and made all this signs come . and it could be ME to. but i bet if all of you did the pros and cons you would see what you all have that could have got this on the way but if you all had mono at one time and have the tonisls then that could be some big deal that get this going on. and alot of you sound like you have had mono but just look and do it and se

  239. I have been searching the internet trying to find anything on this s.o.b. Coxsackie B1 virus that pertains to my situation. The reason I know it is Coxsackie B1 that I am talking about is due to the fact that my 7 week old son died from this horrid virus, in Aug. of ’08, of heart and lung failure. I read in the list of possible viruses suspected that Coxsackie claimed 5 infants lives in ’07 and I can’t find anything on the situation we’re in now. They know it was CVB1 because the awesome hospital that supported my son during his short life confirmed it to be and wanted to see if he contracted it in utero, which he did. The other puzzling issue my family and I face is what are the repercussions, if any. I carried and gave this deadly virus to my son now what is to become of me. I suffer quite a few of these same symptoms but am not sure if it is grief related or the nasty bug. Please any help medical or personal experience would be greatly appreciated. Thanks! God Bless Gaetano.

    REPLY: I am truly sorry to read this, and offer my sincere condolences.

    I cannot say for sure whether the virus I have is this mutant Coxsackie B1, since I have not yet found a lab capable of accurately testing it. But I know of one older person that caught his same bug and suffered a fatal lung infection, and someone else who had a heart attack because of it.

    Assuming my virus is this virulent Coxsackie B1, I know that it can unfortunately have a negative neurological effect on the emotions, making you feel depressed, lacking in motivation, and losing the sense of pleasure in ordinary things. Quite understandably, grieving for your son will provoke similarly strong responses, so as you say it may be difficult to untangle the two. We can only offer you our best wishes at this stage.

    But remember my virus may be not be this CVB1.

    Regarding more information on this mutated Coxsackie B1 virus, I have some references to the 5 infant deaths it caused in the US in 2007 here: 1, 2, 3.

    I have been tying to find more details about this mutated Coxsackie B1 virus myself. So far, from what I have read, it is not 100% sure that this is a new strain of Coxsackie B1; it may just be the existing strain Coxsackie B1 which is doing this. Or it may be a new more virulent strain.

    Recently, I found a reference to 4 infant deaths that occurred in recent months Israel, which they believe were caused by a Coxsackie B virus. These infections involved serious neurological and cardiac damage. I wrote to the hospital in Israel, informing them of the CVB1 situation in the US, but got no reply.

    In terms of the personal repercussions of having this virus, I, and many people on this blog, are in the the same situation, with the same thoughts (although it is likely that not everyone here has the same pathogen; many viruses and bacteria can cause similar symptoms).

    In essence, there is not much you can do about preventing the spread of this virus, apart from taking a little care not to cough or sneeze on people, or in proximity to the food or drink they are consuming. Note that this virus, like most respiratory viruses, is NOT spread by air; it only transmits if some spittle or nasal secretions somehow gets directly into another’s mouth or stomach. Even when taking precautions, this virus may spread to people at work, in your home, and to social acquaintances. In fact we are all of us always spreading germs to each other, unknowingly, and nobody has figured out a way to effectively prevent this. For example, the Epstein-Barr virus (mononucleosis), is usually spreads by kissing or close contact; most people will not affected by mono in the long term, but occasionally a person will get severe long term fatigue (chronic fatigue syndrome) from Epstein-Barr. Before the Polio vaccine, poliovirus was spread invisibly. Some children were severely affected by polio, whereas others caught the virus but showed almost no symptoms. The individual response varies from person to person. The same is true of this virus I have: I noticed that some people are only minimally affected, whereas others show much more severe long term symptoms.

    Nevertheless, I know myself that it is not a nice feeling to carry this bug, in terms of worrying about infecting others. Ideally, we are looking for some kind of treatment or cure for this virus. Since Coxsackie virus is one of the viruses that causes chronic fatigue syndrome (CFS), I have focussed in this blog on some new medical treatments for CFS, and some alternative CFS treatments also (which can sometimes help reduce the symptoms of fatigue etc). – Hip

  240. i was talking to a friend about my symptoms. before i mentioned cfs, he said its probably cfs, he had it 3 years ago and the doctor hooked him up to a machine to clean his blood plasma once a month. he ended up getting rid of it, says that i will too and says that any good doctor should have heard about cfs. Next time im going to the doctor im gona suggest that it may be cfs.

  241. Have you tried a gluten-free diet (/completely/ gluten free, the ‘paleolithic diet’ makes it easiest to be certain)? Gluten intolerance/allergy and celiac disease can produce a wide range of bizzare symptoms; and they can start to clear up again very quicly- within days or weeks- of going gluten free so a trial really isn’t that much of an inconvenience compared to the symptoms.

  242. I had been sick with an immune problem as a child however I had grown out of it and was in very good health when i caught throat clearing disease / sore throat mood virus. It came on very quick and the cold / sore throat was weird. I went to the Dr. within a week and tested negative for strep but was probably given antibiotics though, SOP for the time. but the the brain changes came. My nephew who was five at that time asked why I didn’t want to play with him, I didn’t know why I just didn’t have it in me. Thankfully I was able to continue working until I was stricken with RA. It was however very frightening to work around dangerous machinery while I was becoming dizzy. I did get used to the dizziness after a couple of years, it didn’t go away my brain just made adjustments to cope with the oddities in my ears. My symptoms of the sore throat became particularly bad in 1997 and I started to see a string of family Dr.s at a local clinic and had throat cultures done every time and each time the quick test came back negative but a day or two later the clinic would call and say they found something. Between 1997 and 2000 I tested postive (on the longer test) for strep-C 30 times and was prescribed antibiotics each time. So in effect I was on antibiotics for that whole three year period. You would think a red flag would have went up before RA hit me. I think romanticly sometimes that this may be the next mitochondrial inclusion but in the mean time it’s killing people and I havent been able to find the answer the sensation that I need to clear my throat all of the time or get rid of the swallowing a hot bottle cap all of the time. I’ve had it a long time and would like to find others around me to hang with. If the symptoms are the same and the prognosis is the same how does a person find the right somebody to match your bug? Also has any one knowing they are contagious said anything to someone else before they gave this to them and what did you say? I originally got this from a kiss; however I have given it to so many people inadvertanly even through cooking for them I could have gotten it any number of places.

  243. This was an artifact identified by Dr Cheney during the Incline Village CFS epidemic, but wasn’t officially described until the brilliant Dr Burke Cunha categorized it as “Inflamed Anterior Pharyngeal Pillars”.

    Refs:

    Chronic Fatigue Syndrome

    Crimson Crescents Facilitate CFS Diagnosis

    Joined at the Lips

    -Erik Johnson

    Incline Village CFS survivor

    REPLY: Thanks for those references, Erik. I have found the original articles on the web, and put links directly to these. From what I read, the Incline Village chronic fatigue syndrome outbreak was linked to the herpes HHV-6A virus.

    This HHV-6 variant A has also been implicated as a causal co-factor in precipitating AIDS (obviously in addition to the HIV virus). This is what Dr. Robert Gallo, co-discoverer of HIV, believes.

    Human Herpes Virus 6 Variant A can destroy various immune system cells, perhaps explaining why there is often immune system dysfunction in chronic fatigue syndrome. HHV-6A is also linked to a Multiple Sclerosis-Like Illness

    Remember, though, that chronic fatigue syndrome can have other causal factors and co-factors, including enterovirus, Epstein-Barr virus, cytomegalovirus, parvovirus B19, parainfluenza virus 5, as well as bacterial factors, and even toxic chemical causes, such as exposure to organophosphates. – Hip

  244. I got this thing. Bad sore throat. Took antibiotics and it got better for a sec. Came right back when I finished the course. Fever is back. Pain is unbearable. Something is very wrong.

  245. Hi,

    I hope I don’t offend anyone but…

    I posted here before about my problem…constant sore throat, low energy, extreme exhaustion after effort…

    Someone recently gave my a copy of a dictionnary of illnesses and conditions. It’s in French, written by Jacques Martel “Grand dictionnaire des malaises et des maladies”. It must have been translated into English. Anyway he claims that ALL conditions are psychosomatic, whether it be cancer, ulcers, diabetes, etc.

    A while back I would have been the last person to suggest this could be psychosomatic, but since all of my medical tests have come back negative, I am forced to look into other possibilities.

    I won’t go into details but basically he says that the body develops dis-ease because of unresolved issues. I looked up sore throat, and he claims that a constant sore throat can be caused, among others causes, by an inability to communicate effectively. Chronic fatigue can develop after years of trying to live up to unrealistic expectations, of trying to be someone you are not, because of unresolved guilt or because of a feeling of not being good enough. He gives other causes as well.

    Basically I was wondering if anyone can pinpoint the onset of their problem to a difficult period in their life. For instance, for me this latest episode started shortly after I split with my boyfriend of 4 years. Although I never consciously felt depressed or anxious, the stress may have unconsciouly taken a toll on my body. I do carry guilt about how my relationship ended and I do feel like there are many things I should have said.

    I know it may seem far fetched but this could be worth looking into.

  246. To Cindy: I can Tell you that I caught mine after kissing someone at a bar and that I have given this to about ten people that I know of. My tests all come back negative. My conditions aren’t in my mind there in our throats. I’m positive. Log onto CFS_CFIDS_ME@yahoogroups. Also see there’s something stuck in my throat at steadyhealth. Our cheese can’t be slipping off all of our crackers.

  247. I feel sympathetic to those suffering from chronic sore throat (as I have one for about 1 month and a half) and and take issue with those writing in about depression and decay of modern values, etc being its origin as to me, an experienced physician, this indeed sounds like a virus/ viral infection. Something to consider is that many people have abnormalities/ differences in their immune system that may be genetic in origin. As a gastroenterologist, manifestations of immunodeficiency / immune system dysfunction are Crohn’s disease and ulcerative colitis but there are many more subtle immunodeficiencies such as X-linked agammaglobulinemia, chronic variable immunodeficiency and more. I often think some liver failure patients, many of which go into hepatic failure (in the pediatric population which I serve) from unknown viruses aka “The Puerto Rican Virus” may, have undiagnosed / undescribed immune system problems. There is much that is unknown out there and probably many untyped viruses. These viruses may be causing some cases of Chronic Fatigue, etc. Keep immunodeficiencies and metabolic illness (example Carnitine Deficiencies, Mitochondriopathies, Urea Cycle defects, Carbohydrate Glycosylation disorders in your differential diagnosis). Find an understanding physician who keeps you motivated to taking care of your general health and well-being while you await answers and needed research. Believe in yourself and to developing this site including seeking researchers, both clinical and basic science, as this to me certainly does seem to be “viral” and stemming from a medical cause rather than primary psychiatric disturbance. Dr. J

    REPLY: Many thanks for your encouragement, Doctor J, and those valuable differential diagnosis suggestions. – Hip

  248. I don’t necessarily adhere to this, but let me explain it better…

    This theory I mention doesn’t refute the presence of a virus. Rather the author believes that your state of mind will manifest itself through the virus.

    I guess psychosomatic isn’t the right word here.

    You contract a certain virus because of some unreasolved issue. Had you not had the issue, your immune system would have fought it off. So basically your body chooses to get sick as an expression of some interior turmoil. And this would apply to every single illness. Genetic factors may determine what type of disease or condition you develop, but there is always an underlying “psychological” or emotional issue at the root of it.

    REPLY: Hi Cindy. We all know how our emotional life can affect our health, and even our immune system. However this website has certain scientific objectives, and we don’t really want to diverge from these. The ideas you are reading are really an imaginative form of magical realism literature: you can indulge in this for your own pleasure, but unfortunately it will not help in finding a diagnosis or cure. – Hip

  249. Yes I agree but I just thought I’d put the idea out there in case it speaks to someone. I won’t elaborate anymore on the subject.

  250. To Cindy: I think your right to look at everything, I just don’t want to blame myself for this thing living in me. I’m sorry if I offended you.

  251. A surprising number and variety of physical problems and diseases can be caused by acidity. Today, the vast majority of the populace in industrialized nations suffers from problems caused by acidification, because both modern lifestyle and diet promote acidification of the body’s internal environment.

    In general, the current standard diet is primarily composed of acidic or acidifying elements (proteins, cereals, sugars). Alkaline foods such as vegetables are eaten in much smaller quantities; their alkaline content is insufficient to neutralize surplus acids. Stimulants like tobacco, coffee, tea and alcohol are also extremely acidifying. Stress and physical activity (both insufficient or excessive amounts) also cause acidification.

    Do you exhibit signs of acidification? Find out with this

    checklist of 30 symptoms.

    1. Lack of energy, constant fatigue, loss of physical tone and psychic drive, sensation of heaviness in the limbs, feelings of inability to cope.

    2. Lower body temperature; frequently feels cold.

    3. Tendency to get infections.

    4. Loss of drive, joy and enthusiasm.

    5. Depressive tendencies.

    6. Nervousness, agitation without cause, hyperactivity, sensitivity to high-pitched noises and easily stressed.

    7. Very pale face.

    8. Headaches.

    9. Eyes tear easily.

    10. Conjunctivitis.

    11. Inflammation of the corneas and eyelids.

    12. Acidic saliva.

    13. Loose teeth.

    14. Inflamed, sensitive gums.

    15. Mouth ulcers.

    16. Cracks at the corners of the lips.

    17. Recurring infections of throat and tonsils.

    18. Teeth are sensitive to hot, cold or acidic foods.

    19. Teeth have a tendency to crack or chip.

    20. Pain in the nerves of the teeth.

    21. Excess stomach acid.

    22. Acid regurgitation.

    23. Gastritis.

    24. Ulcers.

    25. Nails are thin and split and break easily.

    26. Hair looks dull, has split ends, and falls out.

    27. Dry skin.

    28. Skin tends to be irritated in regions where there are heavy concentrations of sweat.

    29. Hives.

    30. Leg cramps and spasms.

  252. For anyone interested in deacidifying, I suggest you google Kangen water. Kangen water systems are installed onto your tap and transform your tap water into highly alkaline water, with a ph of 11 (normal water has a ph of about 7). These systems are quite expensive (they run from 1000$ to 5000$) but they are a great alternative to the alkaline diet which is quite complicated to maintain as many fruits, vegetables and almost all proteins have an acidic effect on the body once they are digested. Note that just because a food appears to be acidic doesn’t mean it has an acidic effect on the body. For example lemons have a highly alkaline effect on the body once digested. Adding lemon to your water is a good way to help deacidify your body.

    I’ve been drinking Kangen water for the past month and my symptoms have very much improved lately. Certainly more so than with any supplement or lifestyle change I have tried so far. Because I have been an avid coffee drinker and low-carb eater for many years now, and also a runner for over 10 years, it would make sense that my body had become very acidic.

  253. I have been sick for 5 months with something I caught via kissing and/or oral sex. My main symptoms are:

    Dry eyes with minimal tear production, and tears that are produced sting a great deal.

    Dry peeling lips, gums, mucous membranes and dry mouth with burning throat. Inside of mouth is red. Also have dry skin everywhere that often turns red.

    Sore inflamed patches on hard palate.

    Tiny bumps (almost invisible) on soft palate.

    Gingivitis symptoms, and some gum line recession especially behind lower front teeth.

    Some occasional nasal congestion and drainage.

    Burning larynx and frequent urge to clear throat that does not produce much mucous.

    And the worst aspect of it all is that I feel very ill much of the time, particularly after exertion. I would describe this as similar to the feeling coming down with a horrible cold or the flu, but without the overt symptoms like fever etc. Just a feeling of general awfulness. It is maddening.

    In addition to all this, I also am lucky enough to have red scrotum syndrome.

    I strongly suspect one of these chronic viral infections is causing the majority of the symptoms directly or indirectly. I believe that I will be diagnosed with Sjogren’s Syndrome, for which some of the mentioned viruses have been implicated. Apparently it’s very hard to find the antibodies to some of these viruses.

    Have any of you been tested using the conventional methods and definitively diagnosed with EBV, HHV-6, etc.? Has anyone done John Chia’s test for enteroviruses?

    There is a new device that has the potential to help with many viral diseases, called a hemopurifier. Basically filters the viruses out of your blood, but of course the problem is that a great deal of viruses stay in your organs/tissue. However, antiviral drugs plus hemopurifier treatment might even cure some of these chronic viruses. Anyone else considered this?

    REPLY: Thank you for taking time to post you story. The hemopurifier looks like a very interesting filter device. It contains cyanovirin, a safe, broad-spectrum antivral compound, and apparently also filters out toxins. – Hip

  254. Hip – Thanks to this website I’m continuing to pursue a remedy for this nasty virus. I’ve had the virus since the summer of 2007. What started out as an upper respiratory infection has left me with white tongue, cobblestone palate, parchment-type rash on my biceps, stomach rumbling, & flatulence. I’ve been to 2 infectious disease doctors who have discharged me and an internal medicine doctor at the University of Texas Health center in Houston. He admitted I had a candida infection and prescribed me Nystatin for temporary relief but said he could do nothing for me.

    I did have IGG tests for Coxsackie B1-B6, Parvo, HSV-1 & 2, HHV-6. I tested positive for B1,B3,HSV1, & HHV-6. Again the doctor said he could do nothing for me. I even asked him about the drug Nexavir which he brushed me off and proclaimed it was not in his line of therapy. Is this drug available?

    REPLY: There are doctors who will give you Nexavir (kutapressin) injections: some are listed here on the CFS Treatments page. (If you hear of any others, please let us know). Note that Nexavir treats CFS caused by Epstein-Barr virus and/or HHV-6. It is also possibly that your CFS is caused by the coxsackie B1 and B3 viruses you have tested positive for. For these coxsackieviruses, you may want to consider the double interferon therapy.

    Note also that normally, positive blood test for antibodies to coxsackievirus cannot be used to diagnose CFS (Ref: here). A stomach biopsy for the presence of coxsackievirus VP1 protein is recommended. – Hip

  255. I’ve experiencing this awfulness for almost two years with intermittant successful treatment with large doses of steriod shots (in the beginning) and later with large doses of multi vitamin/mineral supplements. However, always a relapse.

    What I am wondering is, to the people who feel that they have passed this virus on to specific others, do those others always seem to progress as badly or just some of the time? How often? A huge part of me really needs to believe that there is probably a certain type of susceptible person due to other body malfunctions.

    REPLY: RE: Susceptible persons. Having observed over 15 people who have caught this virus, it is clear that it hits certain susceptible people much harder than others. What I noticed is that those people who already displayed characteristic fatigue and low energy (for most of their life) before catching this present virus were the ones who suffered the most additional fatigue and depression after catching it. I would suggest that these characteristically fatigued people were that way simply because they were already harboring one or more of the many other viruses that can cause chronic fatigue syndrome, and their characteristic low energy personality was really a subclinical form of CFS. So then, when this present virus infected them as well, it had an additive effect which made them suffer the most.

    Of course genetic susceptibilities may also be part of the picture. But it is worth being tested for all the viruses that can cause fatigue, including: herpes simplex, Epstein-Barr virus, cytomegalovirus, herpes six virus, parvovirus, coxsackievirus and echo virus, and bearing in mind that these may have an additive effect.

    RE: Diabetes. Viruses such as coxsackievirus and cytomegalovirus are implicated as causal factors in diabetes. Perhaps in the future diabetes might be treated by antivirals. – Hip

  256. Hi Angela,

    I have reviewed this website ongoing and failed to spot your posting from December 15 2008. SORRY.

    Your question was “Were you at anytime in the past prescribed any type of steroid for inflammation? Prednisone ect. My answer is NO I have never taken this medication as I am aware of what certain dosages can do to you. I was however given gabapentin for the PN.

    All my previous symptoms I mentioned in my last posting remain and in fact the receding gums and dental problems are increasing. The nim posting from December 30, 2008 at 3:56 pm that makes mention of the HHV-6 virus is one virus that appears well mentioned as a cause.

    However I believe HHV-6 infection induces bone marrow suppression which I think would show up on a FBC/CBC as the red blood cells would decrease – this remains all fine to my understanding and last test.

    So any further postings will be read with great interest by me. And YES thank god for the internet.

    Neil

  257. To Rain: Those who I’v given this to seem to prgress very slowly, they first usually get a cold or flu like symptoms and get over most of it and then as time passes they get the constant throat clearing that I can hear in them(i.e. you cant talk without clearing. Does anyone else have this? It may be part of PN but I feel like there’s something stuck in my throat or on my epiglotis all of the time. I have not developed diabetes I did develop RA and Sjogren’s though. Did you get diabetes?

  258. Anvil,

    yes I did develop diabetes. Looking back, it seems to have come on pretty quickly in the progression of symptoms. Definitely signs of Addison’s as well, but I’m not sure about Sjogren’s. Does that make the face puffy?

    My throat just simply feels sore and aches, but I don’t necessarily feel like swallowing often.

    Also, the people to whom you feel you passed this, doesn’t it seem like some people aren’t really affected as badly? I’m still very unsure because I haven’t been able to track it very well and, of course, it very much frightens me. I was told a a CFS center that I was NOT contagious, but I simply don’t believe that’s true so….

  259. Also I would like to ask, has everyone supplemented with large amounts of vitamins and minerals per a nutritionist’s advice? It always seems to help me for awhile (months) before I fall of the wagon again. Are we all magnesium deficient…and if so, why? what came first? infection or deficiencies?

  260. To Rain: I’ve been chasing this thing around a lot since I caught it about 20 yrs. ago and I was told that I wasn’t contagious but I’ve heard it others and can hear it progreesing in them(i.e. more clearing as time goes by and voice changes. I don’t think any of my symptoms cause a puffy face but that doesnt mean my case is the same as your’s. My throat hurts to swallow and aches all of the time. I try to stay on the vitamins and probiotics but I take so many things that I sometimes get fed up with more and more anything. 10 ENTs, 2 Rheumatoligists, 1 infectious diseases, 30 GPs have told me I’m not contagious but they don’t believe me when I tell them that I’ve given it to my family, friends, neighbors, and girlfriends. Finally I talked to a new ENT I think he believes me. We’re testing for viruses and associated allergies. Hope for my finding someting to hang my hat on please.

  261. Thanks Anvil, good luck. I can hardly feel your pain as it’s only been 20 months for me hunting down answers, but I do understand your frustration. I was merely asking about mineral/vitamin supplements because that treatment was the only thing besides steroids that seemed to bring it into remission for a period of time.

    I was asking about the spread of this invader to others because it almost seems odd to me that more people aren’t bed ridden. For instance, I saw some signs and symptoms in my boyfriend, but he says he feels fine now. Maybe there are just varying degrees of effect from this invader…. ?

  262. Definitely have high HHV 6 titers but usually if those are high, than so will others be. My theory (like others here) is that something stranger is going on, that causes immunocompromised responses, including recurrence of common viruses such as EBV, CMV, etc. I no longer take steroids myself. That was just an attempt to help fight this thing off when we thought it may be EBV…. (worked for 6 weeks, about 4 months into all this) all symptoms gone.

    Then, the supplements that really seemed to help were simply large quantities of high quality vitamin/mineral supplements in capsule form, along with digestive enzymes. (I’ve had digestive issues my entire life) Also, an adrenal boosting complex (with bovine adrenal cortex) helps noticably too. I’m not saying it cured me, obviously, but last spring for about two months I sure thought that it cured me. I was feeling 90% nearly every day. I fell off the wagon and soon realized it was back to the drawing board.

    To be honest, my very biggest concern right now is worrying about those to whom I may have passed this thing on. Terrible.

  263. To Rain: My biggest concern is not passing this thig on, It’s caused me allot of heartache and my being self concious about it has caused me to wreck opportunities to have relationships. The docs say the symptoms don’t sound that bad don’t worry if you pass it on. Oh sure that’s easy for you to say. I do feel terrible about giving this to my friends and their kids and I’m not sure how I gave it to them but by having them over for dinner. I don’t think I gave to all of them at once but I noticed two of them getting this throat clearing thing then now they all have it. one of them must be contagious also. i don’t know who gets it or who becomes contagious but I know that I am. I’ve given this to my family also. i’m trying to think that I’m just part of a chain link fence for lack of a better term so I won’t feel like I’m the problem but just part of the picture. I’m trying to find people in my area with this so I can go out with someone and not be afraid. Yes I’m bummed.

  264. Well what about antiviral medication? Has anyone tried them? A treatment plan was offered to me (for HHV6 and presumably others) but my body wasn’t strong enough yet so I declined for now.

  265. HI. THIS SITE HAS BEEN SO INTERESTING, MY HUSBAND WAS STRUCK DOWN WITH THIS DISEASE AS YOU ARE CALLING IT IN EARLY OCTOBER 08, HE CAME HOME FROM WORK AFTER ONLY HALF HOUR COULD NOT STAND UP, HE WAS VOMITING FOR 24 HOURS, COULD NOT FOCUS PROPERLY(DESCRIBED IT AS SEING FOUR OF EVERYTHING) AND WAS EXTREMELY DIZZY. HIS THROAT WAS RED AND INFLAMED BUT NOT SORE. HE IS STILL ILL NOW HAD ALL KINDS OF TEST DONE, BARIUM MEAL, EYE TESTS.AND IS WAITING FOR AN MRI SCAN OF HIS HEAD NECK AND ABDOMEN. HE FEELS SICK, DIZZY AND HAS ALOT OF WIND, BELCHING. I CAN EMPATHISE WITH ALL OF YOU AS HIS DOCTOR HAS TOLD HIM IT IS ANXIETY.HE IS SO FRUSTRATED AS HE IS NEVER USUALLY ILL, AND ALTHOUGH THE NOT KNOWING WHAT IT IS THAT IS WRONG WITH HIM IS ADMITTEDLY CAUSING SOME AXIETY, HE FEELS THAT THE ANXIETY COULD NOT HAVE CAUSED THE SUDDEN ONSET OF SYMPTOMS THAT HE SUFFERED ORIGINALLY.HE SEEMS TO GET SLIGHTLY BETTER FOR PERIODS OF TIME AND THEN THE SUDDEN SYMPTOMS COME BACK AGAIN. I HOPE SOMEONE FINDS AN ANSWER THAT WE ARE ALL WAITING FOR. GOOD LUCK

  266. to Rain: No antivirals yet I havent found anyone to believe me exactly yet not even the big guns. I’m having 6 virus tests done and a food allergy test. Hopfully that will show something. I thought I’d been tested for everything but when I called the infectious diseases doc. to see if they ran tests for PARVO, HHV6, EBV, COXSAKIE THE ANSWER WAS “NO” when I was seeing him I specifcly asked “did you look for everything that can grow in a human and he said “yes” I couldn’t believe it. He did say they checked for herpies though. Anyone thinking of candida?

  267. I posted here months ago asking if anyone had sought help/treatment at the MAYO CLINIC. Nobody replied.

    I asked my Doctor for a referral to the Mayo Clinic, and it was denied. They said my insurance would never cover it.

    The waiting list is about 6 months without a referral.

    I considering paying out of pocket for everything and going anyway.

    A team of some of the best Doctors in the world collaborating on your case at once seems ideal for this miserable afflilction.

    So why aren’t you trying to get into the Mayo Clinic??

    REPLY: It would certainly be interesting to hear what Mayo Clinic says. However, if you receive a diagnosis of chronic fatigue syndrome, then there is not all that much that can be done in terms of cures. So you may end up spending money, but getting little benefit.

    On the Treatments page, there are listed some medical and complementary medicine protocols for CFS, many of which you can try without needing a doctor. Some people have experienced improvements with these. – Hip

  268. I’ve had a sore throat for about 2 months now. I was working in the infectious diseases department of a hospital and that was when it started. The interesting part is that I too have the skin manifestation on the upper parts of my hands and too suffer from fatigue. It was not only me, other people that worked at the department complained of sore throat and also had the skin manifestations. I took very strong antibiotics (Levaquin) and it seemed to work until I stopped the treatment- then the symptoms returned. The troubles with clear thinking also seem to be affecting me. I also have the grumbling stomach and the bowel movements.

    I spoke to the head of the of the department and I was “assured” that I had caught “some kind of a virus”- this is something that is often seen in the department.

    I didn’t know that there was something like this until I had experienced it. But I must assure you that THIS DOES exist and that it is in fact is acknowledged by the medical community but has not been given an official identification and is always disregarded as “some kind of a virus”.

    I am with you in your struggle against this virus and against all human pathology in general.

    REPLY: Thanks for writing your story. It is very interesting that you say this virus is “acknowledged by the medical community but has not been given an official identification“. Are you saying that hospital infectious diseases departments see these exact symptoms frequently, but have not yet given a name to this strange syndrome?

    Also, are you able to test for coxsackievirus in your department? My best guess is that this is a mutated coxsackie virus – and there is evidence for a virulent mutated coxsackievirus B1 going around. See above on this web page for details.

    Note: IgG and IgM coxsackie antibody tests are not reliable in long term coxsackie infection, but if you have access to coxsackie PCR tests, coxsackievirus culturing, or coxsackie serotyping services in your department, it may be very interesting to do these tests. Another approach is to follow Dr John Chia’s system, which is taking a stomach biopsy in order to test for persistent coxsackievirus infection (he tests for the enterovirus VP1 protein in the stomach tissues).

    – Hip

  269. One more thing that I failed to mention was that about 10 days after the sore throat first appeared I had a dry cough that lasted for about 1 week and then subsided. This was apparently similar to the symptoms seen in Mycoplasma Pneumoniae infections and in atypical pneumonias. I had also experienced severe headache before the sore throat appeared.

    REPLY: Yes, a few people have experienced severe viral headache for around 3 days, sometimes with noticeable personality changes manifesting afterwards.

    – Hip

  270. Is anyone here having continous throat clearing, feeling of a lump in your throat, can’t cough it up can’t swallow it down sensation, perminent PND or the feeling of it, GERD, sore throat sensation on your soft pallate?

  271. Yes, my headache lasted I would say exactly three days. I know that Coxsackie B virus is usually responsible for Pericarditis, sore throat, and headache. Enteroviruses are also the most common causes of aseptic meningitis so that could explain neurological symptoms and maybe some post-infectious neurological effects. I did not have very noticeable personality changes- just extreme fatigue.

    As far as the medical community being aware of this spectrum of symptoms, it is something that is seen often in terms of a chronic sore throat, laryngitis type symptoms, and nasal congestion in the infectious diseases department. It is not given a specific title because when anyone presents with a sore throat that is prolonged it is understood that it is a result of a virus although I specifically asked about Coxsackie and I was told that it is a relatively common virus (most common cause of pericarditis and aseptic meningitis- I also had heart pain by the way as the very first symptom, even prior to headache), I was not given a definite diagnosis.

    The most common cause of sore throat however, be it bacterial or viral is the ADENOVIRUS. If you have the opportunity to research this could you please list the exact sequence of events that normally occurs in an Adenovirus infection? From my understanding it present with possible conjunctivitis but I do not know much about the different strains and mutations. However it is a very important note that the Adenovirus is THE MOST COMMON cause of a soar throat (the word “adeno” stems from tonsils, hence the “tonsils virus”).

    REPLY: Heart pain is one of the symptoms my virus definitely produces in certain people. In one case, there was a pain like having a heart attack. This virus has also caused pericardium infections (pericarditis).

    Adenovirus can probably be ruled out, on the basis that adenovirus does not cause neurological symptoms, whereas my virus definitely does. Also, adenovirus is highly contagious, whereas the virus I have takes quite a long time to transmit to other people. – Hip

  272. Also, in the picture of the sore throat it looks as though there is one enlarged tonsil- is this the case? Are the tonsils usually enlarged in the “Sore Throat Virus” – is it symmetrical or unilateral in most cases?

    REPLY: In my case the sore throat was unilateral: the main area of infection was initially located at the back of the soft palette, on one side, spread along the palatoglossal arch (more towards where this arch meets the base of the tongue, rather than at the uvula end of the arch).

    The back of my throat (pharynx), however, was symmetrically infected, and careful inspection of the pharynx shows lots of pink papules (small raised pimples not producing puss), but these raised spots (which are slightly elongated rather than round, say 2mm by 1mm in size), are barely discernible, since they are the same color as the surrounding skin.

    Subsequently the infection spread further down my wind pipe and into my gut. But still the sorest part of the infection remains on the palatoglossal arch. (Note: I had my tonsils removed many years before catching this virus).

    - Hip

  273. Hip, when was the last time that you were tested for every single virus available (including HIV)? Do you undergo tests regularly?

    REPLY: I was tested for HIV and many other viruses well after catching this pathogen. Nothing showed positive. You cannot in reality be tested for “every single virus”, since there are thousands. And going by the symptoms, you only need to focus on those viruses that are respiratory, gastrointestinal and neurological viruses. Here is my survey.

    If you fill out your email (it’s kept private), I can contact you directly. – Hip

  274. In other words this blog is substituting the term Chronic Fatigue Syndrome with an actual Virus termed the “Chronic Sore Throat Virus” which has yet to be discovered but presents with the symptoms shown above. Is this the case?

    If it is, that is probably an intelligent way of going about finding an etiology for this condition seeing as how the medical community at one point entirely abandoned the notion of there even being something as CFS until later research proposed the possibility of extended viral activation within cells.

    REPLY: Not quite. If you read some of the recent literature on chronic fatigue syndrome, you will first notice that the consensus of medical opinion is at last shifting towards accepting both the existence of CFS, and an infectious agent explanation for CFS (caused by such pathogens as enterovirus, Epstein-Barr virus, HHV-6A, parvovirus and parainfluenza virus 5 and others).

    An important point to understand is that medicine usually considers separately the categorization of a given disease (that is to say, its diagnosis), from the agents that cause that disease. For example, encephalitis (infection of the brain) can have a number of causes, including several viral causes, bacterial causes and even fungal causes. In each case, this disease is always diagnosed and categorized as encephalitis, but the infectious agent that caused it will in general be different from patient to patient (and in most cases of encephalitis, the infectious agent often remains unknown). Disease categorization is usually reached by looking at symptoms, and often with the additional help of various biological markers found via blood tests, etc. But finding the cause of that disease is often more difficult, and, for a large percentage of diseases, the list of possible causes is completely unknown to medical science to begin with.

    So, getting back to your question, we are not substituting the term chronic fatigue syndrome with an actual virus called the Chronic Sore Throat Virus, since the former is a disease category or diagnosis, and the latter is an infectious agent that causes chronic fatigue syndrome (and is not the only agent that can cause it). I hope that is clear.

    Furthermore, bear in mind that although my symptoms closely match those of chronic fatigue syndrome, CFS may not be a correct diagnosis in my case, or yours. The skin wrinkling symptom I have is one that is not usually found in CFS, so my diagnosis of CFS does have a little question mark next to it. (However, in CFS, there are often high levels of collagen-destroying and elastin-destroying enzymes, and my skin damage symptoms may simply be due to a type of CFS that has extra elevated levels of these enzymes.)

    In addition, you must remember that what I have called the “Chronic Sore Throat Virus” may not be a new virus: it may simply be an existing virus. Or more likely, it may be a virulent mutation of a existing virus, such as the emerging killer coxsackie B1 virus that is currently causing fatalities in infants. Alternatively, the Chronic Sore Throat Virus may be an entirely new virus. New viruses are emerging all the time.

    In summary: there is a degree of uncertainly here (as there often is in medical science). One of the objectives of this web site is to slowly home in on the truth. Another objective of this web site is to put out a warning, just in case this is a new virus. And another objective is to help people (that have a sore throat and these symptoms) to understand what is happening to them: explaining that there is this Chronic Sore Throat Virus going around, and also making clear that there are a number of well-known existing viruses that can cause a chronic sore throat and the other symptoms they are experiencing, and that their condition can be diagnosed as CFS.

    – Hip

  275. R,

    this also can have a bacterial etiology.

    Moreover all data now sugest that this should be rather bacterial infection than virus.

    Regards,

  276. R,

    P.S. Levaquin can’t work in virus infection case. You can’t find any benefit(even short term) from any antibiotic during virus process.

    P.S.S. Quinolone antibiotic didn’t work at monotherapy regimen. Always relapses..very quikly…and usually more powerfull. These data have statistic basis.

  277. R,

    Does your inf. department have an access to any of the payment base medical websources or journals such as Cambridge Journals, ELSEVIER, ScienceDirect etc. ?

    Anonymous(about Mayo Clinic),

    Mayo Clinic or something like it could help only if some amout of people with the same troubles will be present.

    Otherwise it is 99% that they will spend your money and will not find the cause.

    Much usefull can be trials with empiric therapy with broad spectrum and high bactericidal antibiotics ..for example with carbapenems or with combinations.

  278. BORIS,

    I do have access to medical journals or any scientific journal for that matter.

    What bacteria could cause the symptoms that I described besides Strep Pyogenes and Mycoplasma Pneumoniae?

    I was told that what I got was almost certainly a virus but no one said that was 100%

    I am nearly certain that the Levaquin made me feel better, unless it was just the placebo effect.

    Thanks for the comments

  279. R,

    Where are you from?

    >What bacteria could cause the symptoms that I described

    >besides Strep Pyogenes and Mycoplasma Pneumoniae?

    No. This not atypical one or vulgar one.

    This is some kind of slow infection..and maybe endogeneous.

    >I was told that what I got was almost certainly a virus but

    >no one said that was 100%

    There are no such chronic virus infection exist in the world today.

    You may have some viruses but you can’t have any choronic disiase because of them.

    >I am nearly certain that the Levaquin made me feel better, >unless it was just the placebo effect.

    Thi is not placebo effect.

    Well now you have 1 thing that talking that this is not a virus.

    ————————————-

    Give Hip your e-mail and ask him to connect you with me(HIP has my contacts also).

    ————————————-

    >I do have access to medical journals or any scientific

    >journal for that matter.

    That’s great! There are a lot of very interesting research works that are avaliable for free.

  280. >I do have access to medical journals or any scientific

    >journal for that matter.

    That’s great! There are a lot of very interesting research works that are NOT avaliable for free.

  281. What kind of an infection can it be if the throat hurts for about 1 month, does not hurt for about 2 weeks, and then begins to hurt again badly for several days after smoking a cigarette?

  282. so I have been singing since i was 3 and go to a school for singing where i sing 3 hours everyday, and then on my own at home for a bout an hour every night. I drink lots of water and vitamin drinks and stuff, but i recently noticed something. My throat doesn’t hurt like a normal sore throat, but the back is all red and enflamed, I can’t sing very well and I have white bubbles in the back of my throat. I’ve also been extremely stuffy. I also take very good care of myself, and have a very good immune system. Have any ideas?

  283. >What kind of an infection can it be if the throat hurts for

    >about 1 month, does not hurt for about 2 weeks, and

    >then begins to hurt again badly for several days after

    >smoking a cigarette?

    R,

    i prefer to discuss such things with adequate people in privat. This is not the right place and time to report such a things in public.

    Ask Hip for my e-mail adress or skype or give me yours and i will explain you what i think and why.

  284. To Rain -

    I just re-read your earlier comments about not being able to track who you may have passed the infection to. In the case of my virus, it is quite easy to see, since the majority (around 70%) of the people who catch it get this very characteristic chronic stuffy nose permanently (for years). The nose fills up with thick mucus, and needs to be blown every two to four hours roughly, to clear the mucus out. It it not a runny mucus like you get with a cold: the mucus is thick and heavy an stays in the nose. You have to blow quite hard to get it out. This is a characteristic symptom of this virus. Of course, other pathogens can also cause the same or similar nasal symptoms, so you have to watch out for the other listed symptoms in people too.

    Also, I expect that the group of people posting on this forum probably have a variety of different pathogens causing their conditions; perhaps only a small number have the same bug as I have.

    In your case, the very high HHV-6 titers plus your immune suppression suggest the possibility that your may have caught HHV-6 variant A, which is known for its immune suppression. Normal lab tests do not distinguish between HHV-6A and HHV-6B. So you know you have high HHV-6, but not which variant. There is a big difference between them. See here for information on how to test to see if you have the HHV-6 variant A.

  285. I skimmed this site because I’ve been having some strange symptoms. In late September ’08, I had what seemed like allergy attacks and now it’s pretty much just constant mucus and sneezing when the nose is sensitive, yet I can’t seem to pinpoint that I’m actually allergic to anything and I never was allergic in the past.

    I also have what an earlier post on here described as ‘cobblestone palate.’ The roof of my mouth is covered with bumpy spots, which my dentist saw but said it was just the natural structure of it. Why have I only noticed it in the last half year then?

    The past week I’ve started to feel a slight sore throat, esp. in the mornings. And my lymph nodes seem swollen at times.

    Also, at this moment I have a strange condition on my lips. It is red around them and very dry, esp. in the corners. Seems like a kind of fungal or other kind of infection. I had it once and got rid of it with tea tree oil. Now it is back (maybe because I used a lipstick that had that infection on it still?)…. In general my facial skin has been extremely sensitive, constantly breaking out in whiteheads and getting out of balance.

    And my hands make me look like I’m 20 years older, really veiny and a bit wrinkly.

    What’s wrong with me!? : ( I’ve been researching ‘throat cancer,’ but now that I’ve come across this, it sounds like what I have is more closely related to this strange virus…

    I just moved to the Netherlands and we’re waiting for our health insurance to get set up — the moment it does, I’m headed to the doctor! I don’t even know what kind of doctor, though. An ear, nose and throat specialist, a GP, a dentist, a dermatologist???? Any suggestions?

    REPLY: Hi dd. An infectious disease specialist should be who you see first. They will test you for several pathogens, but it is often very hard to pin down the actual cause. – Hip

  286. For anyone interested in following Coxsackievirus activity around the world: there is an outbreak of finger nail loss (onychomadesis) in Spain at the moment, suspected to be due to a Coxsackievirus. There is a recent case of Coxsackievirus (enterovirus) nail loss in Michigan USA too.

    I wonder if our virus is causing this, since the chronic sore throat virus tends to attack the connective tissues throughout the body, and this can also cause the nails to detach.

    Is anyone experiencing unusual nail symptoms here?

  287. Thanks, Hip, for getting back to me so quickly.

    Do these symptoms sound similar to what you’ve experienced? Or any guesses what it could be? The tough part is that any of the symptoms could be nothing or they could be something else in and of themselves, with no relation to the other symptoms….

    I still haven’t ruled out the idea of throat cancer. After reading what you’ve been through, which would you think would be worse, stage one throat cancer or the strange virus? The virus is very scary because it seems chronic and without a cure — am I right? At least with cancer you can cure it if you catch it early — most of the time…. the virus seems to go on and on…maybe I haven’t read in-depth enough, but has a doctor said specifically what you have?

    sorry for the 21 questions…. : }

    dd

  288. Finally! This chronic sore throat has been with me for about a year and I’m at a loss to understand what is causing it and why it won’t go away. Like others postings here I’ve been very worried that it may be throat cancer but I don’t seem to have the other symptons of throat cancer. What I do have:

    1. A sore throat of the soft pallet and tonsils that won’t go away completely. It will be real sore and red for a few days and then go away for a few days, only to relapse after that. On and on this has been going on for the past year.

    2. Congestion that also comes and goes. One minute I’m fully stuffed up and then after a few minutes I’ll clear up. Then the cycle starts again. Notice a white discharge in the back of my throat from the nasal cavity into my throat at times.

    3. Symptons seem to clear up at night while I sleep. I’ll wake up in the morning feeling fine and then 2 hours later I’ll have a raging sore throat. Yesterday was such a day. Woke up feeling fine but by 10am the throat was on fire.

    4. Will go hoarse after talking for only a short time.

    5. Need to at times clear my throat constantly, there is so much flem, which only serves to make the sore throat worse.

    6. Low grade headaches several times a week.

    7. Tinnitus in one ear that seems to be getting worse.

    8. Feeling of preasure behind my eyes and front of head.

    This is the current list of symptons. Any information that can help would be thanked. Am wondering if it could be connected to mold? Has it been established that it is indeed a virus or is that line of thinking just speculation? Will follow this site closely.

    Thank you

    REPLY: Thanks for your comment, Kevin. Your symptoms do sound quite like this virus. The pressure behind your eyes is probably caused by sinus infection and congestion. – Hip

  289. One last symptom I forgot on previous post:

    A shortness of breath at times. Noticed other posters here said the same thing. I don’t feel out of breath, just that I can’t fill my lungs all the way.

    Thanks again.

  290. Could it be ICL ?

    REPLY: By ICL, do you mean Idiopathic CD4 Lymphocytopenia, which some people call Non-HIV AIDS. If so, this is an interesting suggestion from you rgby – many thanks – I will look into it. – Hip

    Update: Idiopathic CD4 Lymphocytopenia is diagnosed when there is a CD4 count of less than 300 cells per mm3 of blood (with an absence of HIV antibodies). Normal CD4 counts of healthy adults are in the range of 500 to 1500 cells per mm3 of blood. The last time I was tested (a few years ago) my CD4 count was 990 cells per mm3 of blood.

    ICL has been associated with a retroviral agent called HIAP-II (Human Intracisternal A-Type Particle-Type II). However, ICL is thought to have more than one cause. The elderly sometimes develop ICL.

  291. >this also can have a bacterial etiology.

    Moreover all data now sugest that this should be rather bacterial infection than virus.

    >i prefer to discuss such things with adequate people in privat. This is not the right place and time to report such a things in public.

    >Ask Hip for my e-mail adress or skype or give me yours and i will explain you what i think and why.

    Boris,

    Did you get my email from Hip? If not then get it from him, write me what your hypothesis is as to what I have

  292. To Kevin: I have the same things I’ve been complaining about it forever and the Drs. don’t have an answer and normally think I’m out in left feild. Sorry there is more than one of us but atleast we’re not alone. In a way I wish it was just me so I would know that I couln’t give it around. The throat clearing is the worst I’ve trained myself to not do it so much but now my throat is in a perminent state of charlie horse or something like that the muscles are just tightened up.

  293. My 13 yr old daughter had started a year ago with sore throat, visual loss in one eye.. that came back after a day.. then periphrial vision, with swelling on that side of face. MRI showed a few unspecified lesions. She was treated for cellulitis with 2 wks antibiotics, but sore throat persisted. A couple more antibiotics and mycoplasma (hospital can’t find those results though) to find out in end she never had any bacterial infection to begin with. Abdominal pain led to hospital (kidney area), one negative CT scan and a Dr. that said it was psychosomatic. 2 months of throat pain, tennitis, then dysphagia another 2 months, the ENT Dr. twice, scope down throat, and he said she was crazy. Opthomologist twice for eye pain, gritty feeling… nothing. Then severe abdominal pain, followed by SEVERE mental rollercoasters, even to chop for hallucinations, just regular blood labs ran, one for high metals, and they pushed her of as depression. Rheumatologist ran a bone scan, negative. No answers.

    Now the pain is in both legs, a numb pins and needles pain, in arms a few times, and complete exhaustion through all this, symptoms look like MS, waiting on spine MRI, if lessions I will have my answer after all this time, but if negative, is what led me to this site. Now, her younger sister, completely healthy till about 4 months ago… CONSTANT sore throats, once was strep, but last 2 months to Dr. he says it looks infected, tests strep and cultured, negative. Said probably sinus drip… then I pushed for chest x-ray..now pneumonia… but now is getting the mental issue… completely not her.. and puberty set in LAST year. She lost interest in her sports, and is now also having the headaches and stomach pain. A kid that NEVER complains.

    My question is this: does the sore throat pain come and go, and do the symptoms start at the top and work way down, as did my first daughter? She is so ill and tired, probably 1 good day a week for a year. Nobody has ever tested EB or herpes viruses, just lyme and mono, which said she had mono at one point? And then I myself have been sick for about 4 years now, started with throat, then exhaustion, even to hospital.. reg labs showed nothing. Legs and hips turn numb pins and needles when laying down, dry eye sandy pain for 3 months, days in a fog….. how can I get a DR. to even think this is a long term virus, what should he be testing for? We are sick, and nothing to be depressed about, just too much that it is all of us… I even had water tested, thinking it was something in my house.

    REPLY: Hi ko, it certainly sounds like your family has the same or a similar bug to mine. I understand exactly when you say your daughter “lost interest in her sports”. My virus made me lose emotional interest in many things I was once passionate about. Even when I do try exercise now, it exhausts me. (I used to be very fit before this virus). And I don’t get the mood boost I used to get afterwards – instead I feel worse.

    Some of the common viruses that can typically cause these type of mental and physical symptoms are: Epstein-Barr virus (the virus that causes mononucleosis – but you say you have been tested negative for mono), coxsackievirus (an enterovirus), herpes 6 virus, cytomegalovirus, and parvovirus B19. You should get tested for these viruses to start with. Note that long-term coxsackievirus often does not show up in blood antibody (CFT) tests, and so this virus is best tested by stomach biopsy.

    Most doctors will not admit or believe that you can have a chronic viral infection (except for viruses like HIV and hepatitis C), and most doctors do not believe that these common viruses can cause the disease that all your family may well have: namely chronic fatigue syndrome (CFS). But there are doctors that do help patients with chronic fatigue syndrome, so please locate a doctor that understands about chronic fatigue syndrome, and the chronic viral infections that cause it.

    In answer to your question about where the symptoms first begin and where they spread to: sometimes they start with a sore throat, and other times they can start with a stomach upset (vomiting and diarrhea), but in either case, the virus will soon work its way to other organs around the body. It is random, and varies from one person to the next.- Hip

  294. Thanks…well MS out for now, BIG mysterious question…any itchy swollen red rash that comes and goes, severe itching that lasts about 20 min to an hour?? This is crazy, but the first daughter always got this (had all allergy tests, nothing, even weighed option of stress hives, but doesnt add up on happy moments, but usually comes before the pain) I have had about 3 months last summer with the same rash… WELL, now the 2nd one with the current sore throat problem… has just now started with the SAME rash as her sister. Showed DR’s numberous times, and they don’t give answer… almost had a surgeon willing to skin biopsy.. but didnt know where to send it, or what to look for, yet could only do it while the rash is present!) Guess you can see why Dr. said psychosomatic ( when I mentioned that I had same symtoms, right away he thought we were crazy), learned to keep my mouth shut after that!

    REPLY: The virus I have sometimes causes eczema type rashes.

    By the way, make sure that you don’t have carbon monoxide poisoning in your house, which can cause symptoms that are similar to viral infection. Carbon monoxide can come from faulty gas or oil heating systems.

  295. >Showed DR’s numberous times, and they don’t give answer… almost had a surgeon willing to skin biopsy..

    >but didnt know where to send it, or what to look for, yet could only do it while the rash is present!)

    >Guess you can see why Dr. said psychosomatic ( when I mentioned that I had same symtoms, right away

    >he thought we were crazy), learned to keep my mouth shut after that!

    ko,

    They have to take a samples from the damaged places and make at list 3 things:

    1. Histopathology

    2. Gram’s staining

    3. Acid-fast staining (Ziehl-Neelsen or Fayet staining).

    This is the minimum.

    >Did you get my email from Hip? If not then get it from him, write me what your hypothesis is as to what I have

    R,

    i have you e-mail already.

    I was a little busy. Will write you back asap.

  296. thank you …funny you would say that..I asked to check histopathology as well…beings I had a lymph node biopsy that showed sinus histiocytosis, which my Dr panicked..and every other Dr. looked at me with 3 heads…and even with that, being rare or shows with cancer…surgeon said insurance would not cover that type of biopsy, beings would have to be sent to special lab….will take note and try again! thank you!

  297. I had viral testing done and came up positive for EBNA, EBV-IGG not EBV-IGM also POSITIVE for parvo they didn’t give titers for EBVs though the Dr. is going to have the tests rerun to get titers and will ask my local Dr to prescribe Famvir. At least this Dr. believes I have something.

  298. >beings I had a lymph node biopsy that showed sinus

    >histiocytosis, which my Dr panicked..and every other Dr.

    >looked at me with 3 heads…and even with that, being

    >rare or shows with cancer…

    Boolshit.

    They must make staning firstly before making such conclusions…damn idiots.

    Say them that they must search closely for “A.c.ti.n.o.m.yc.o.s.i.s” and “L.e.pr.o.s.y”.

    LN maybe is the best sample.

    >surgeon said insurance would not cover that type of

    >biopsy, beings would have to be sent to special lab….will

    >take note and try again! thank you!

    I recomend you to pay for biopsy and all researches(tests) needed from your pocket and make it at some well know clinical base…as Mayo for example.

    Because this is maybe most important and fundamental thing you have to do VERY WELL. It is 90% that only in LN biopsy you really can find the answer.

    P.S. Sorry for english, i’m not native english speaker.

  299. sinus as in sinus cavities of white blood cells , biopsy was of armpit. like I said, been a yr now, and never got an answer. hemotologist said I had lymphomas, but after 1 CT scan, said he didnt know.

  300. ko,

    >sinus as in sinus cavities of white blood cells , biopsy was

    >of armpit.

    Sorry, my english isn’t perfect.

    Did you mean some kind of microabscesses with the meaning “sinus as in sinus cavities of white blood cells”?

    I just cant understand exactly what did you mean…

  301. Hi to Everyone on this Forum,

    Again all the postings on this site are v. helpful.

    Unfortunately alike many/all others no doubt the symptoms all remain.

    I still have ongoing muscle twitching, the skin crawling (PN) mainly in the legs (numbness in certain parts of the body) and the loose legs/ligaments – legs simply give out suddenly. And the receding gums and dental cavities and lower right dull stomach pains.

    I just wondered as I’ve had this now for a nearly 4 years now, what can I expect, more of the same or just a worsening of the symptoms to the point where I can’t think or walk properly without swaying or my legs giving way..

    Any comments welcome please.

    NeilW UK

    REPLY: Hi Neil. Quick question: do your legs give way suddenly, or are they more or less consistently weak (which is my case). I ask this, because if there are sudden moments of leg weakness, this is a symptom of generalized anxiety disorder (GAD). People with GAD can sometimes almost fall over because of this symptom. – Hip

  302. Boris,

    I’m not sure the answer myself, all I know is I have everybodys symptoms that are posted here, along with my 2 daughters, and a lymph node biopsy (was enlarged and formed a little mass in tissue next to it with-in 2 months, so Dr. wanted it out) and the lab results said “sinus histiocytosis ” never got an answer, just sent for bone scan and pulminary function test, and nothing!!As for now, I also am going to try the yeast and fungal direction for what its worth,(also CANNOT drink alchohol for the last 7 months, the itchy rash and sick to stomach in morning, maybe is the yeast building up?)and was tested and no allergies! we all have the white yuck tongue, prone to athletes foot, and nail problems…gonna try natural route, but will push for staining of skin like you suggested!Will keep checking in with this posting…. thanks again!!

  303. >As for now, I also am going to try the yeast and fungal

    >direction for what its worth,(also CANNOT drink alchohol

    >for the last 7 months, the itchy rash and sick to stomach in

    >morning, maybe is the yeast building up?)and was tested

    >and no allergies!

    Fungal infections have a totally diferent clinics.

    Anyway you can check this quite easy – try anifungals drugs.

    For example some powerful azoles like k.e.to.k.o.n.a.z.ole or less powerful f.l.uc.o.n.a.z.o.le.

    Or if you really crazy about this you can try A.m.p.ho.t.e.ri.c.i.n B, but i NOT recomend you to use A.m.p.h.ot.e.r.i.c.in because of its huge toxity.

    But i’m sure that you will not recieve any effects with antifungals cuz the infection have a bacterial etiology.

    A lot of people already tried. All my words have a strong statistical base.

    But some types of antibiotics will work.

    Not sure? – try.

    Most people don’t undestand before have not been step on the same rake as others did.

    So if you don’t you need to step on this rake to understand.

    Otherwise you will waste your time and money.

  304. I have had an on-off sore throat for the last 6-8 months, and developed a tickly cough for three or four days that only emerged for a few hours at night then disappeared completely for the rest of the day, and in the last month I have developed really thick mucus that takes about half an hour to clear in the morning. As I speak I have the sore throat. It is always like the kind of sore throat you start to develop at the beginning of a painful throat infection, but never progresses beyond that starting feeling. So I typed “chronic sore throat mucus runny nose” into Google and came to this site. I was amazed that some other things that had been happening to me (for example, very rapid – and I am talking seconds – mood changes from OK to raging anxiety) were listed here in relation to what I searched for. What seemed to be a random collection of odd things happening now seems to make more sense as a structure. I will therefore write everything that has happened down and speak to a doctor. I am quite worried.

  305. >BORIS,

    >you still have not written me

    R,

    No way? Check your junk(s.p-a=m) folder. it is possible that your mail robot moved my email to junk.

    Subject of email was “RE:your hypothesis”.

    Let me know if you find it or not. If not i will resend from the gmail adress.

  306. Hi guys,

    I bought this book for this website http://immunethebook.com/

    It has helped with my my fatigue

    Don’t be alarmed this book is for everyone. I would give you guys the info but i respect the work of the author.

    I have also found this website

    http://www.healingbeats.com/

    It is for meditation i do it right before i go to sleep

    (Knocks me out )

    I also found this detox technique called oil pulling I haven’t done it yet because my natural doctor has told me to wait to do a detox it seems promising.

    I was wondering if Cindy is still coming to this website I am very intrigued by your knowledge if you can tell more info on H202 threapy that would be great.

  307. Amazing article…I contracted very similar symptoms after a

    recent flu vaccination…do you think this has any correlation..

    some of the symptoms point to SLE (systemic lupus erythematosus) which I have also had since 1981…Again,

    thank you for such in depth thorough research into this.

    Hope you have had some relief…Please update

    REPLY: There are some anecdotes of flu vaccination kicking off CFS, but not much hard evidence. There is a slightly more evidence that CFS can be kicked off after having a hepatitis B vaccination (and hepatitis B vaccination does have a link to causing multiple sclerosis too).

    In any case, there is always an alternative explanation: that you may have just picked up a virus at around the same time as the vaccination. – Hip

  308. Hello again: Thank you for everyone’s comments…I should of read all of them before posting…even more confirmation for me because my 18 year old daughter has had the same throat symptoms with minor gastrointestinal complications and a more systemic candida (ob gyn currently giving diflucan)…didn’t clear it up on two doses earlier. (she is not sexually active) She also has severe unexplained fatigue and they just ran thyroid which came back normal. I didn’t mention earlier that I had sudden onset of shortness of breath after this first appeared which I never have had in my life…went to allergist…did all the asthma/testing etc..came out negative…they don’t know why I have continued coughing (clear mucous)…they had tried two courses of antibiotics initially..Zithromax and Avelox…still have cough am’s..evening mostly…chest x-ray negative…Now my husband is complaining of similar symptoms…As for possible precipitating factors that could weaken immune system further or expose me …I did have a disc replacement C 5-6 in late 2007 and my daughter had a gall bladder that was essentially not functioning…ejection fracture very low causing over a year of incapitating nausea…after confirmation via 2 HIDA scans, it was removed in 2008 and the nausea symptoms pretty much resolved…but it does make one wonder if the immune system being taxed may make us more vulnerable. I have also had ongoing contact with family friend who was my daughters babysitter when she was very young for several years…they are from Cambodia and she was recently diagnosed with Heb B (which she carried for years unknowingly)…now the symptoms have become much worse. We have had exposure to her when she has been sick recently. She took a trip to Thailand/Cambodia within the prior month. I list these factors to see if any commonality is present. I did have Mono at 17 and a false positive syphilis test when I first married at 22. Wasn’t diagnosed with SLE until age 31…and that accounted for the false positive. I list these things in the hope of some possible links that may be helpful. I appreciate everyone’s input and admire your perseverance to find an answer. I hope the M.D. that posted continues to offer ideas because many of us have not found Dr’s that will work with us until an answer is found….Thanks again everyone…

  309. Hello Hip,

    Thanks for taking the time to answer my question again.

    As for my legs they are generally always weak, however I am able to stand, but have to concentrate on standing without swaying or the legs just giving out suddenly – I have fallen to my knees numerous times.

    I was just wondering as the skin crawling (PN) is ongoing all over but mainly in the legs and are sometimes almost underskin tremor like. So am worried this may lead eventually not being able to walk.. I have no problems with the Hip (not you by the way :o) it’s just the leg ligaments that are weaker and weaker wk by wk.

    Any idea what I can expect if we have the same thing..

    NeilW UK

    REPLY: Your leg symptoms, which are called jelly leg or rubber legs, are very often found in anxiety disorders or panic disorders (and these disorders may be caused by virus). I don’t have these jelly leg symptoms myself. The cause of jelly legs, when the legs suddenly give out, is probably related to a fluctuation in the levels of the nervous system neurotransmitters such as serotonin. The nerves then fail to communicate with the muscles, and so the muscles fluctuate in strength. High doses of a B-vitamin called inositol have been used to boost serotonin in order to treat depression and anxiety disorders (5 to 10 grams daily of inositol powder – best bought in bulk). So perhaps this will stop jelly legs too. – Hip

  310. This is me! Loss of mental acuity, depression, fine wrinkles on hands and neck, shoulder dislocations- both (beside childhood, just started happening a few months ago, while sleeping!), sore throat x 3 + years. I’m a nurse but haven’t worked in 3 years, quit dating, quit liiving really, besides carrying on with activities of daily living. My memory has gone to shit when I used to literally have a photographic memory, and I feel like I’m “dumbing down”. Prioir to this, I had no health problems. Now I feel like I’m 55-60 years old. My body quit having perioids for 3 years- for no explainable reason- (wasn’t on birth control, not dieting) and my doctors said it was early menopause. Well my periods have returned in the past couple months now, but I didn’t even think all of this was possibley connected. When I was 12 I had Mono and at about 20 they detected epstein barr virus in me. Any info you have would be extremely helpful. Everyday I just go through the motions of being a single mom of three kids. I want to have a life, rather than just waiting to die. By the way, I’m 32 years old.

  311. Just out of curiosity, how many of you have the sore throat, stinging gritty eyes, stomach symptoms, sinus symptoms, excemic skin flare-ups improve or subside if you leave home for a couple of days. Or have you noticed symptoms are worse when you spend more time upstairs rather than downstairs, or in the family areas (den, dining, kitchen) verses bedrooms? I’ve been a nurse for 12 years and have lived in the same place for 3.5-4 years, about the length of time my symptoms started. Friends and family who have stayed with me for more than a month, began having symptoms similar to mine. As well as my kids are begining to develop symptoms ( I think thiers were delayed related less exposure to the home- I’m home all day, every day). I beleive we may be being poisened by something that is so widespread that home-insurance companies quit insuring for it.

    REPLY: Check your gas appliances in case you are being poisoned by carbon monoxide, which can occur if its exhaust outlet is blocked. – Hip

  312. The Symptoms of Black Mold Poisoning

    The symptoms of black mold poisoning are numerous, and include the following:

    Headaches

    Fatigue

    Muscle aches and cramps

    Sore throat

    Burning of the Eyes

    Sensitivity to Light or Red Eyes

    Diarrhea

    Abdominal Pain

    A Metallic Taste in the Mouth

    Night Sweats

    Difficulty Concentrating

    Dizziness

    Chest Pains

    Heavy Menstrual Periods

    Black mold poisoning is also responsible for several symptoms that are less common. If you experience any of the following, you may have been exposed to black mold.

    Depression

    Panic Attacks

    Nose Bleeds

    Difficulty Paying Attention

    Nausea and Vomiting

    Cold-Like Symptoms

    Seizures

    In some extreme cases, exposure to black mold can be fatal.

  313. To Amy, this is all over I haven’t been in the place I lived when I caught this thin for 6years and I’m sure I’m giving it to others. I have all the things you mention along with what HIP speaks of. I’m sorry your having this thing I live in MN and am trying to find others with this so I can at least be someone who understands how I feel physically and psycologically. I don’t have any answers but I do have ears and can listen.

  314. To Amy: Please forgive me I don’t have the menstrual conditions though as I’m a male. I’m sure that is an added dimension.

  315. I am a fairly healthy 21 year old white female, but am expiriencing most of these symptoms. The onset of my problems was October ’08. It was like I was fine one day and the next my throat was so sore I could not swallow and was crying from the pain, and had a fever of 102 F. I went to my PCP and was diagnosed with strep, although testing negative. Since then my right lymph node in my neck has stayed inflamed and sore to the touch. I have been back to the doctor at least once a month, and have since been diagnosed with Epstein-Barr.

    I have noticed within the last few weeks a severe rapid onset of depression and reclusiveness. I do not have the desire to do anything, interact with anyone, I have been sleeping more (I slept over 14 straight hours the other day, this is not normal for me since I generally avg 5 hours of sleep a night), and have been far more moody, going from happy on-top-of-the-world, to terribly irritable, to crying my eyes out and not wanting to go on.

    Not all the time, but at least one night a week I expirience a restless leg sensation when I lie down to try and go to sleep. And my fingers and toes (more so my toes) have a tingling sensation on a daily basis.

    My vision has changed some, was 20/80 and now 20/200, and I have had to go back to the eye doctor for a new perscription for my contacts.

    My memory has not always been the greatest, but I find myself forgetting simple things now-a-days.

    I do not show any signs of the wrinkling.

    This has concerned me since the onset, but my doctor just keeps giving me Rocefen shots, andtibiotics, and steroid packs (which helps for about a week max). After reading this article I am even more concerned, because it sounds like something way more serious than a sore throat and Epstein-Barr (which from the research I have done generally just lies dormant in your body), and it sounds like there is no cure for it. Will it just go away or will I just slowly deterriorate?

    Please feel free to comment me back with any input or questions.

    Thank you to the person who posted all of this information, it finally feels good to have some answers and know that I am not alone.

    I am honestly sick of being sick and would like to get on with my life and back to my normal activities.

    REPLY: Hi Kim. Sorry to hear you have these symptoms, which it would appear are caused by the Epstein-Barr virus. EBV often just goes dormant in most people (and 90% of the adult population have EBV in their systems), but in rare cases it continues as a low level infection, and causes the type of symptoms you are experiencing – and these symptoms are what is called chronic fatigue syndrome (CFS). There are many things you can do to improve CFS – have a look a the treatments page to begin with. – Hip

  316. To Kim: don’t worry it’s not impossible that you’ll just get over the EBV in time. Otherwise this thing can only do to or take from you what you give it permission to. That sounds easy and I know it’s not but make yourself, just get up and make yourself everything. Start with a good breakfast (bananna and some cereal) and climb stairs for a few minutes. Make a list of what to do for the day don’t do that just before bed though I find if I do that too late thinking about that will keep me up. Maybe make your list for the week on Sunday that way you’ll have the whole week to chip away at it, so when your not feeling like it you can take a day easier. Take it easy on yourself it’s going to be okay and so will you come what may. Hope your having a great day, I’m going to.

  317. I have had most of your symptoms, without the wrinkled skin and gum disease. I also had grey sore spots on my inner lips, plantar fibromatosis in both feet, knuckle pads, ear pain, heart pain, spleen and liver pain, and knee cartiledge damage. After having one of the plantar fibromatoma’s removed, I got a Deep Vein Thrombosis (blood clot).

    I was heavy exposed to mold ten years ago, and was immediately very sick for months. This evolved into being sick half the time for about a 1 1/2 years, then flue like symptoms 3-4 times a year, lasting 1-2 months each time. Now I believe the mold exposure compromised my immune system because of the toxin overload, allowing viral and bacteria that normally reside in the mouth of most people to proliferate through my body.

    Eventually I got the wrong diagnosis of ‘Sjogrens Syndrom’ from a Rhuematologist. I accepted this for about 5 years until I saw another Rhuematologist for my knee, and he stated I didn’t have arthritis. Then I began to look at my symptoms and narrow down causes with the help of the internet and Google searches.

    About 8 years from the initial illness, I finally found a Dr. who diagnosed and treated me for both Epstein Barr Virus(EBV) and Clamydia Pnuemonia (CPn) at:

    http://www.fmtlc.com/

    Lyme disease, Cyto meglovirus (CMV) and HHP-6 will also cause my symptoms, but I tested negative for those. My Dr. says most cases have more than one infection.

    Many Dr’s will be satisfied with the diagnosis of ME/CFS, Fibromyalgia, or Chronic Fatigue Syndrome. This is slightly better than a diagnosis of ‘hypochondriac, but does not pretend to find the cause or cure. There are viral and bacterial causes of CFS and arthritis. You need to find a Infectious disease specialist, an internist, or a d.o. who is familiar with these infectious agents and their treatment.

    It was a struggle to find the right Dr. and get the right blood tests. Most general practicing Dr’s aren’t familiar with infectious agents, and won’t accept some will only show up as raised antibody levels. Many of the symptoms are sub-clinical.

    Epstein Barr Virus (EBV) is a viral infection that bstarts in the throat, and some studies suggest it resides here and continually reinfects:

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1187932

    There is no inexpensive drug cure for EBV. You can build up your immune system so your body can fight it off. I have been taking the ant-viral Valtrex for the last 1 1/2 years, and many vitamin supplements. Here’s a link to a newsletter that describes vitamins and supplements to help with EBV:

    http://www.nutricology.com/In-Focus-Newsletter-August-2006-Dana-Flavin-sp-39.html.

    I would also add an alkalizer, like lemon juice in water, or baking soda and water. Your body becomes very acidic at the cellular level, and this will help to fight candida infections.

    Montoya at Stanford University has used Valcyte for EBV with success, but it is very expensive and my insurance won’t pay enough towards it.

    I also have Clamydia Pnuemonia (CPn), which is a bacterial upper respiratory infection. I have been taking a combination anti-biotic treatment for two years. This bacteria has different life stages, so different antibiotics are used to kill it in different forms. The over the counter supplement N-Acetyl-L-Cysteine (N-A-C) is effective against the active infective form of CPn. If you take 1000 mg twice a day and have a bacterial die-off reaction, you have CPn. The web site http://www.cpnhelp.org has a lot of valuable information, and recommended medical protocols and vitamin supplements to take.

    Chronic illness will effect many parts of your body, including your adrenals and thyroid. My Thyroid free T3 and T4 levels were low, so I’ve been taking T3 Triiodo-L-Thyonine to boost my metabolism. Also taking DHEA over the counter supplements to boost testosterone.

    After two years of constant antibiotics, some bacterail anti-body levels have dropped. My Rheumatoid factor is very low, and most arthritic symptoms have gone away. Gradually my energy has improved. I’m able to do more stuff, and not pass out after physical exertion. The remaining Planter fibromatoma on one foot has shrunk 80% in size, and continues to get smaller.

    Two weeks ago I stopped all medications. I’m still taking the numerous vitamins, minerals and herbals to strengthen my immune system. I was having frequent Diahrea, and needed to get my gut floral working again. I wanted to see where my body was and what I would feel like during a break from the medication.

    Lately I have been feeling more energetic, and started Bikram Yoga. The hot Yoga is a way to gradually get in shape while sweating out toxins. Maybe I’ll lose some weight too.

    Good luck to anyone that reads this. Hope this has helped.

    REPLY: Many thanks for your contribution, Doug.

    – Hip

  318. I have not found/heard of anyone yet on the web, doctors, or word of mouth who shares exactly what I am going through until I read your blog. I have every single exact symptom you describe here. It literelly changed my life in a flash. I went from being very healthy, to some days fearing that I am dying! It’s a long story how I first contracted this (the only thing that has come out of my extensive lab work is the infamous EBV). It is so elusive. I thought I was F&^$ed from a stupid decision I made one night while drunken, unprotected dumbness. Thought I caught the bad one, until all the waiting and 3 tests confirmed I am in the clear. Scary stuff, now with the symptoms: Besides the sore throat that never seems to go away, I have the skin wrinkling on the tops of hands also. My hands go through this sort of daily routine: when I first wake up they seem fine, they are almost always cold, throughout the day (peaking out to around 2-4 pm) they start to turn bright blotchy red. They have that sort of pins and needles mixed with a hot burning sensation. By the time the sun comes down, they seem to go back almost completely normal in color and sensation. The skin on the tops of hands have a slightly shiny, wrinkling look to them (along with the blotchy vascular-looking rashy redness). Could this be Livedo Reticularis? I have bouts of dizziness, ear-ringing, visual issues, malaise, stomach bloating, weak joint sensations, all of it…I really do not know if this is EBV alone, or a neo-virus, but my lab results showed my post/pre EBV tests (both) as unusually high titers. This has encompased my life since I first came down with it in Dec. 07. It sucks and seems to never go away. If it is EBV alone, I heard it can take an average of 2 years to fight off/go dormant in people around late twenties/thirties age-wise. I pray every friggin’ day that I can get back to anywhere near who I was before. The mental states you mentioned are right-on with me as well. I used to be very articulate, and it seems I am slowed to talk correctly, and short-term memory just diminishes. I hope we can all get something out of this because like most of you here; I am sick and tired of being dismissed by doctors, friends, and others as “there is nothing wrong with you” when you know there is.

  319. Hi, I started this 2 months ago.

    Started with stomach rumbling and sore throat that would tingle and jump around my mouth. Then, I started getting a lot of mucus and bronchitis. During all of this, I would get episodes of fatigue where I would have to lay down and take a nap everyday for a few days. After a month, the sore throat went away for a while and the mucus and bronchitis subsided because I started getting mild flu like symptoms that came and go for two weeks( getting them now). Every time I stand up, I get light headed and feel faint. I can barely walk around now. Also, I started getting extreme bowl movements feeling like I want to throw up and I wake up with diarrhea, sweats. At the same time now, I have muscle spasms, pins and needles in my legs and crawling in my head. My fatigue is worse in the morning and get better during the day, but always there. The low grade fever is up and down in the day. My girlfriend got the same thing the same day. She only has the stomach pain, sore throat and fatigue. I have the fatigue a lot worse then her. I feel like I

    m getting worse. I would be ok living with this is it didn’t come on so strong, but I can barely move from bed now. I went to the hospital and they did every test possible. The last two tests I’m waiting for are stool tests for parasites! I almost wish its that so I can get better soon. :( I cut off all contact with friends and family and I am thinking of leaving school.

    REPLY: Thanks for your comment. Make sure your doctors test you for all the viruses that can cause chronic fatigue syndrome, which may well be what your have. These are: coxsackie B virus, Epstein-Barr virus, HHV-6A and parvovirus B19. It is quite probably one of these that you have caught. Mostly like the first one, coxsackie B virus. By the way, coxsackie B viruses do tend to hit males worse than females – these coxsackievirus sex differences are well-known. Hope this helps. – Hip

  320. Also, I think I forgot, weekness in legs where I can barely stand and my heart beat is faster, dizzy and ringing in one ear.

  321. Hip, I think they did everything twice :(. They say i’m completely fine. It’s only been two months so maybe it is something else?

    REPLY: Coxsackie B virus antibody test can often come out as negative, even though there is a persistent ongoing Coxsackie infection. – Hip

  322. To sad and depressed: DOOOOO NOT!!!!! Leave school please forgive me but we can not let this thing do this to us. I’ve been battling this for 21yrs. so I do know how bad you feel. When I first got this thing i would be starting to fall over and catch myself. Very terrifying as I was working around machinery that could easily remove a hand if I fell into it. I don’t know precisly how it is in your body I just know that you can’t give in your stronger than it is. Please feel free to post and tell me off if you wish.

    Yours

    Anvil

  323. Fascinating article. I’ve been suffering from all of the symptoms (except the skin and joint parts) for almost two years now. I’m 18 now. My throat is constantly sore, some days worse than others (today is particularly bad, hence me looking it up -yet again- on the internet hoping for an asnwer). Problems with nasal blockage, intestines (flatulence, constant diarrhea), dental problems with gums being very irritated, and an extremely apathetic view on life. It’s gotten to the point where I just cannot care about anything.

    I don’t think I’ve been tested for any viruses, only bacterial infections. I’ve done a month of antibiotics last month and my doctors are set on everything being allergy related, however doing the antihystamines and such have not helped an inkling.

    It doesn’t help that I am still on my mom’s insurance and she is refusing to pay for me to see a doctor, because she thinks it’s all in my head and that I am purposefully making myself develop these symptoms for attention.

    Thank you for such an informational article. I hope someday I can get relief for my symptoms, but I’ve basically reached the point where I just want to die than keep going on like this.

  324. It’s been a while since I have been to this site and now that I’ve caught up with more recent posts I thought I would share some experiences I’ve had since then.

    In October, the compressed discs in my lower back began to act up and cause me serious pain. I had been able to keep this under control for years with exercise and nutritional supplements. I thought maybe the virus was a possible cause.

    I got a scan with the Nutrienergetics system and was given three of the remedies to take. Upon taking the first one I had a very strong reaction. I had this sudden urge to tip my head to the left and as I did so my neck popped in multiple places and then I had this crawling sensation along my right shoulder and up into my scalp on the right side of my head. This area is always tight because of my habit of grinding my teeth on the right side in my sleep. The remedy I had taken was for circulation and I realized that the sensations were from blood flowing into the tight areas. The pain in my back subsided a few hours later and didn’t return until early February when I had another scan and was given five remedies.

    The results this time were that the virus symptoms greatly subsided, the sore throat and swollen lymphatics went away and the mucus in the sinuses was greatly reduced. The pins and needles and twitching also were reduced as well as the kidney pain which disappeared completely and the digestive problems got much better. My energy returned to normal and I was sleeping much better. I spent two weeks in bed with the back pain but that also got better and is now fine.

    I ran out of the remedies in the last two weeks and the virus symptoms have gotten worse. So I can tell this helps but it looks like I have to keep taking them.

    Unfortunately NES is not something that is widely available. I only know about it because I have friends who are practitioners. It has been available in Europe for about seven years and has recently come to the US but there are few practitioners as yet. It is also not covered by health insurance as it is an alternative therapy. I posted the website in my original post but here it is again: http://www.nutrienergetics.com/ You can see if there is a practitioner near you.

    The remedies are little bottles of water with some magnesium, sodium, calcium, potassium and a bit of ethanol. A few drops are taken in a glass of water. The only differences between the remedies are the energetic fields they are entrained with. Sounds very woo woo, I’m sure. The system is based on a combination of acupuncture and quantum physics. The two men who developed it were long time sufferers of CFS and cured themselves using this. If you are fortunate enough to have a practitioner in your area and decide to try it, I’d be interested to hear your results.

    REPLY: Thanks for your comment and update. It is probably the magnesium in this formula that is helpful. High daily doses of magnesium (with calcium) is a well known alleviator of CFS symptoms, especially anxiety symptoms. The rest of the nutrienergetics web site is just a melange of New Age ramblings, rather than precise science. But it is definitely worth exploring herbal and vitamin therapies. There are many links to such therapies on the treatments page. – Hip

  325. I seem to be a victom of the same bug. July 2008 I started noticing my eyes turning red in the mornings, I started feeling a little more tired. The tiredness got slightly worse until mid October when all these weird symptoms started occuring all at once, it was like my immune system crashed. Extreme fatigue unrelieved by months of bedrest. Doctors cant find anything wrong with me. I ended up visiting the ID unit, they told me it was probably some kind of virus, to rest and thats it. Good Thanx! They found higher level of Igg for EBV, so whatever this is weakens the immune system allowing latent viruses to become active. Also there is a connection with the gastrointestenal side of things it seems that the virus affects stomach permeability robbing the body of nutrients and exacerbating symptoms. Has anyone looked at the possibility of a stomach bug like C. Diff. being responsible for this? Has anyone made any progress?

    Watever this is it’s nasty, I can’t believe that doctor’s dont know about this usually diagnose it as ‘stress’. Clearly something needs to be done. If anyone has made any progress please share.

    Thanx. Good Luck Everyone.

  326. This sounds so much like what I have been suffering from. I cant seem to get my doctors to figure anything out. what is the cure?

  327. Hi Hip,

    Thanks again for taking the time to reply with your thoughts.

    The reason I mentioned the leg symptoms is because I have a baby and worry when I am carrying him. And am concerned that this condition will only worsen to the point that I can’t walk.

    I am sure my condition would be described by Dr’s as an anxiety disorder or panic attack if you like. But I am 150% convinced that all the symptoms and disorders I have are caused by a virus of some type. Your explanation on the cause of jelly legs being possibly related to a fluctuation in the levels of the nervous system neurotransmitters such as serotonin is a valuable insight as I read this is the near the same for Restless Leg Syndrome. This may also relate to the cause of my Peripheral Neuropathy and body twitching. I’ll have a try with the high doses of the B-vitamin inositol and post on the site how this helps or not.

    We all have something on this site and this is the closest I’ve come to any type of cause. Will be visiting the site ongoing, and further comments appreciated.

    NeilW

    REPLY: High dose inositol is the most important thing. High dose inositol can often be as powerful and effective as taking SSRI anti-anxiety / anti-depression drugs, but without the side effects of these SSRI drugs. Well, there are some side effects with inositol, but they are good ones – like lowering your cholesterol, reducing atherosclerosis, and promoting liver function!

    Inositol can be bought cheaply online: search for “Inositol powder”. You might want to start with 3 grams of inositol powder daily (which is roughly a heaped teaspoon of powder); then your anxiety and depression levels should be noticeably lowered within two days.

    As for the causes of our anxiety and other symptoms – we both know that they are caused by the viral infection. But doctors are generally trained to classify diseases, not look at their causes. So a doctor will say that you have “anxiety disorder” or suffer from “panic attacks”, which is to correctly classify your condition; but they will never usually tell you that the underlying cause of anxiety disorder is probably an infection of some sort. Moreover there is a good reason why doctors do this: there are no effective cures for many types of viral infections at present. So therefore doctors in clinical practice just focus on categorizing your condition: and once your condition is classified, you can then be give the appropriate treatment to at least palliate your symptoms.

    However if, in the future, medical research discovers ways to eliminate the currently untreatable viral and bacterial infections that are the underlying cause of anxiety (as well as probably many other diseases, like diabetes, multiple sclerosis, and Alzheimer’s), then we will be able to treat the actual cause of the disease, rather than just treating its symptoms.

    Even taking inositol for anxiety is just treating symptoms, not treating the viral cause. But suffering with anxiety is horrible, and so finding a good way to treat its symptoms is better than nothing at all.

    With the doctor, it is often best to go with their classification of your condition, and try out the medicines they prescribe to help this condition (which is usually SSRI drugs in the case of anxiety disorder), to see if they help.

    - Hip

  328. I have noticed that I am wanting to salt my food more. I thought it was just because of the effects on taste of the virus. Then I saw this article today on sodium deficiency and mood with this list of sodium deficiency effects on mood:

    • loss of appetite

    • loss of capacity to experience pleasure and joy

    • difficulty concentrating

    • excessive fatigue

    • general sense of exhaustion

    I wonder if the virus caused the body to use up sodium?

    REPLY: Sodium is low in people with chronic fatigue syndrome, Phooph, so it would be interesting to try supplementing with extra salt. Some people with Morgellon’s disease (whose mental symptoms are similar to CFS) have found a salt and vitamin C protocol (10 grams of each daily) helps them a lot. – Hip

  329. My symptoms are quite similar. One thing I have noticed that you haven’t mentioned is that my sore throat will wax and wane throughout the day. When my throat is very sore, I will have increased mental and physical function. However, it always dissipates and when this happens my physical and neurological symptoms are much worse.

    Does this happen to anyone else?

  330. Hello,

    I stumbled across this site while searching for a reason for my frequently reoccurring sore throat and need to burp. After reading the list of symptoms that this virus causes I am convinced I have it. I am 23 years old and feel like I’m 50.

    For the past 2 years I have not been able to breath that great through my nose. I have very little sense of smell. I am also coughing up thick brown mucus all the time. I’ve also had pneumonia twice in the past 18 months.

    Now this is the worse part of all, my mental health. I have very little desire to do anything. Its a struggle for me to get out of bed. I have a 6 month old daughter and I cant even get up with her in the morning. And if I ever sit down I feel like falling back asleep.

    I have been having such a hard time recalling words but I just thought it was from smoking pot in my teen years. Weeks and days go by in the blink of an eye. I am also on top of my oral health care yet my breath smells terrible no matter what I do.

    The most recent thing I noticed was how weak my body feels. About a month ago I actually fell because my knees just gave out while walking. When I sit and bend my knee I can actually hear them creaking.

    I have gone and even got tested for STDs thinking only something like that could cause most of these issues. I cam back negative for everything.

    I have told my family and they think I’m a hypochondriac. I have told my doctor and he said, “don’t believe everything you read on the internet” and also seemed mad about it.

    I don’t know what to do.

    REPLY: Hi Alan. Have a good read of this site when you have the energy. You will see that you may well have chronic fatigue syndrome (CFS), which is often caused by a chronic virus. Can I suggest that you try to get some support and solidarity from fellow suffers of CFS; or try to find a doctor sympathetic to CFS. Hope this helps. – Hip

  331. I very strongly believe that you may have autoimmune disease/s. I have too and can relate very well to most of your article. It may seem strange but an overactive immune system can cause these symptoms. Does anyone in your family have lupus, rheumatoid arthritis, vasculitis etc? If they do you are at a greater risk of developing one of the many autoimmune diseases. A rheumatologist would do the appropriate checks. You are not a hypochondriac, I was labelled as one from childhood but was actually very ill and also at a high risk from a blood clot or a stroke when I was finally diagnosed age 48. I used Google and finally worked out for myself what was wrong (Behcet’s Disease) and it was confirmed (with other autoimmune problems) when I was referred to hospital. GOOD LUCK. Do not be fobbed off, persevere and know that most people with autoimmune disease are not believed and often fight for 10-15 years for a diagnosis because of ignorance of the problem. Being armed with information is really helpful. I was diagnosed with CFS, ME, asthma, bronchitis and even had a second tonsillectomy among other things but it was actually my own immune system attacking every organ of my body (my throat was alaways the first to show symptoms). I am in the early stages of treatment but have a better quality of life already. I will be thinking of all of you out there and will keep an eye on this site. The website I gave is only a starting point, there is loads of info out there.

  332. Do high carbs foods or eating acidic foods like oranges affect your stomachs, it seems to affect mine badly.

    REPLY: Yes, I cannot digest acidic fruit like apples now. I also seem to have more appetite for meat and protein that vegetables. Previously I loved eating fruit and vegetables. – Hip

  333. My stomach has become fussy about what I eat and it changes. One of my favorite things to eat for breakfast is kasha (toasted buckwheat groats) to which I add coconut oil and curry powder. Sometimes it makes my stomach upset and I have to switch to oatmeal, and then after a few days that makes my stomach upset and I go back to the kasha. I have not noticed a problem with acid fruits yet, but other than apples I don’t eat much fruit.

    Has anyone tried a raw food diet? I did that for a few weeks and I had more energy, but went back to eating cooked food due to cold weather and getting tired of finding enough food to keep me satisfied.

  334. My C-reactive was not elevated did U guys find yours elevated… This virus I think must only raise it a small amount

  335. ” memory problems, emotional and motivational lassitude, the weak legs, wrinkling skin, weak digestion, constant bowel gas, etc, etc. In fact, only about 25-30% of people with this virus get chronic sore throat. Constant stuffy and runny nose is more common, manifesting in about 50-60% of people with this virus, but again, this symptoms is not a great problem in itself. By contrast, nearly everyone experiences depression, loss of motivation, loss of interest in things in general, rapidly weakening memory, and significant mental and physical fatigue when they contract this virus. These mental symptoms are the real problems. – Hip”

    Thank you for assuring me that I’m not losing my mind.

    5 years ago at age 50 I met a wonderful man, moved in with him before the wedding and within 2 months developed horrible gas along with rapid weight gain. It became uncontrollable and I couldn’t stand up without farting. It’s only funny when it’s somebody else is doing it!!

    I have all the symptoms (legs,skin,intestinal disorders, itching) except the sore throat and I vaguely remember having one after oral sex but that was a very long time ago and haven’t had it since. (the sore throat) I convinced myself that I had contracted parasites from my husband and have been taking herbal protocols on and off for the last 5 years but haven’t seen anything weird in the stools and haven’t felt any better.

    I’ve been raised on herbs so I rarely visit allopaths and the naturopaths haven’t helped me either. They seem to chase symptoms too and can’t seem to find the cause. I should mention that I eat organic, in small quantities and still gain weight.

    I think it might be helpful to pursue an anti-viral course of action and stick with it for at least 30 days. I have a tendency to try something for a couple of weeks and if I don’t see improvement, give it up and try something else.

    I’ve tried: wormwood, cloves, black walnut, black seed, oil of oregano and more recently enzymes (serrapeptase) and have noticed the gas is virtually gone.

    Chlorella and Spirulina are great for nutrition and detox but not considered antiviral.

    Hydrogen peroxide (food grade taken internally) and colloidal silver didn’t help nor did Fulvic Acid or liquid minerals or pomegranate juice.

    Cleansing programs such as magnesium based oxy powders are good for sitting on the toilet for long periods of time. However, about 4 years ago I took 10 capsules and afterwards got an intense moment of head clarity. Haven’t worked up the nerve to try it again.

    Next up is a protocol of garlic, vitamin C, Siberian Ginseng and cayenne. I’ll start slow with the Vitamin C because too much can cause diarrhea. Ginseng has been used extensively in Russia for improving vigor and the cayenne helps with the delivery and efficacy of the other nutrients. I’ll continue with the enzymes as well.

    I’ll report back here on their effectiveness.

    I never suspected a virus because my husband doesn’t have any of my symptoms and has virtually continued on with his life same as before. However, he has suffered from occasional migraine headaches for decades while the only problem with my head is dizziness, brain fog and feeling spaced out. Maybe he’s a carrier and not a victim.

    Oh, I’ve also tried electromedicine off and on and for less than 200 bucks it might be a better solution to a pricey water machine. It supposedly kills pathogens in the blood. I have a hard time using it regularly because I forget about it (aforementioned brain fog). Also to increase alkaline levels, simple and cheap baking soda helps along with a shot of apple cider vinegar.

    As for being psychomatic, I’m a fairly strong person, a level 2 Reiki and meditate regularly. While something emotional might have triggered the onset of the virus, getting rid of it requires physical intervention. The old custom of prayer at meals, blessing the food can also be applied to giving power to medicines. If only I could remember to do this before I take them!

    Thanks for allowing me to spill my story. Up until now I’ve felt quite lonely and now that I know it’s viral in nature I can better commit to my treatment plan. There is hope for recovery and to rediscover that vibrant woman I once was.

    REPLY: Hi Diane. Thanks for contributing you story. Out of the things you said you tried for eliminating intestinal gas – wormwood, cloves, black walnut, black seed, oil of oregano and serrapeptase – which one or ones do you think were responsible for fixing this symptom? – Hip

  336. Oh, one other thing. I’ve been plagued by granulomas on my gums. I had one removed ($350, no insurance) and another one grew back in it’s place. The dentist asked if I were pregnant (not at this age!) because traditionally granulomas are associated with hormonal changes.

    I’ve already been through the change, tested for hormone and thyroid levels (within range, isn’t that what they always say?) and while they are not life threatening, they get large and are ugly. Also, I think they contribute to peeling and cracking lips. I also have worsening vision and pull long white stringy mucosy things from my eyes. Ok, that’s just gross. Sorry.

    Anyone else have granulomas? They look like cysts made of soft tissue. Google searches will turn up images.

  337. I have experienced many of these symptoms, however I do not have a chronic sore throat, but I do have a chronic stuffy nose.

  338. My hands get really red and hot, and then at the same time, my feet get really cold and turn blue/purple. Lately, my left foot has been going numb on the outer side, and my legs and arms are always restless and I feel the urge to pop my hip joints and stretch my arms all the time… I’ve experienced the other symptoms for years now-constant stuffy nose, anxiety, depression, stomach/digestive problems (I was diagnosed with Gastritis when I was 16), my skin is very sensitive and I get sore and bruise very easily.

  339. And, I have a headache almost every day…I thought I may have Sinusitis, but after reading this description, I am thinking maybe there’s more to it.

  340. hi there

    i had something similar it started with my right hand throat lymph node becoming incredibly swollen(like golf ball size) and then my throat getting totally infected resulting in coughing up blood for days and spending 2 weeks in bed on antibiotics. no diagnosis has ever been found. a friend of mine had a similar problem and the ulcers(?) in his mouth were swabbed and diagnosed with herpes virus of the throat.

    i have had this for 4 years now but dont get sick anymore just a bit lethargic and sleep deprived.

  341. I came back from a long w/end in Chicago March 29 20009. Monday I felt ok Tues I woke up with sore throat. Later in the morning I felt very ill, extreme body aches, vomited, stomache ache. Went to bed had fever around 102. Went to Dr’s next am said I had bad virus. Back to bed. Back to Drs Thurs as throat was getting worse, very sore to even swallow. My ears were beginning to ache. She examined me and all my glands were swollen. Tested me for strep negative. Still said virus and to rest. Gave me phenegren with codeine to help with pain of throat. Instructed to take mucinex am and pm along with using nasal spray in am. I was in bed for a week. Also got 3 cold sores on mouth. Feel like I may be getting another one. Now I am still having terrible congestion, (but have had this problem for a couple of years which seems strange as I never had it before) feel very tired, bordering on being irritable, concentration is minimal, feel stressed, just generally feel out of sorts. One of my son’s and his girlfriend now have sore throats and congestion. I was not around them until last Friday when we were out to dinner. Which was 10 days later.

  342. I think I know the cause of this and I hope people will believe me. There are types of anaerobic bacteria that live in your mouth and that is why a human bite can be very serious. Sometimes these bacteria thrive in small clusters near the rooth of a tooth and as they live their life they quietly secrete virulent toxns in small quantities. They do not grow aggressively so as to cause an actual oral manifestation because they can’t live in the presense of oxygen. They limit their colonies to a certain number and do not cause the actual diseases such as tetanus or botulism.

    In old times people suffered from similar symptoms that you described but the doctors, not understanding anything about bacteria or viruses, used to call it “asthenia” or “neuroathastheni.” Later these symptoms were called “sodier’s heart” or “Neuro-circulatory asthenia” and it was more prevelant in the rich or well to do. However it was not as widespread as it is today because today’s poor person (in the USA or Europe) is far better off healthwise than was a wealthy person over 120 years ago.

    Let me explain why — dentistry, lack of dental hygiene, or too much dental hygiene. In 1850 a person with a bad tooth could not afford a dentist per se and the tooth was simply extracted. If a person had money they usually had a better diet and better teeth, but if the teeth were bad they often went to great lengths to preserve them whereas a poor person would go to the local barber (yes a barber) and get the tooth yanked out. A wealthy person — and this continues right up until today — would get the thing drilled and filled and capped etc. Thedevelopment of modern dentristry is gradually killing the people who can afford a dentist and also the people who complete neglect their teeth.

    There are several skin diseases that were first described a few years after the advent of the “root canal” — one example would be a kerotic lesion disease of the feet and legs called Stucco Keratosis. It may have been around for years but it started to affect so many people that by 1970 they thought up a name for it. It’s a benign but unsightly dermatosis that has no known cause. It appears in men as they get older, and what happens as you get older? Your teeth either start to rot or you’ve had at least one root canal or filling.

    Imagine this if you will — why did nature make the pain of a toothache the most unbearable pain in the world besides obvious things like fire or blunt trauma? The answer is that nature was hoping that one day mankind would figure out to pull the tooth out! Wild animals die from infected teeth. Infected teeth are meant to be removed and humans are the only animal smart enough to have figured that out.

    There was a book written about ten years ago about a doctor named Cotton ( i don’t know the name of the book) but in the book he is made out to have been a madman because in all the years he ran the New Jersey State Mental Hospital, he pulled out every patients teeth. He even pulled the teeth out of his Harvard educated son after the boy started to have bouts of depression that made him perform poorly in school. Dr. Cotton’s belief was that bad teeth caused all the problems that brought people to the mental hospital. Imagine a world without anitbiotics or anti-hypertensive medicine? What kind of madness would be wrought by extended and protracted bouts of bronchitis or prolonged hypertension? Encephalopathy perhaps? Right or left side heart failure in the young that would manifest as severe fatigue, anxiety, panic, delusional psychosis? Cotton laimed to have cured all these people by pulling their teeth out. It sounds barbaric, but it oftened worked — of course if that was the cause of their mental illness. He also claimed to cure schizophrenia but that was a bit of a stretch but today they are starting to find a link between Schizophrenia and exposure to toxoplasmosis in childhood.

    So we take such good care of our teeth and becaus dentists rarely pull teeth anymore, we have brought upon ourselves an immune, psychological, and physiological disorder for which we have made up names. CFS, EBV, Fibromyalgia and the list goes on and on. Of course dentists to pull the odd tooth here and there but what do they do? They put in an implant — deeper still than the original root and a better place for anaerobes to thrive and secrete their toxins.

    The actress/singer Cher had imperfect teeth when she started out and when peple asked her about it she said that she would never change her teeth, and he didn’t until well into the 1970s. She got them fixed and then what happened? She missed a lot of work because she developed EBV and was sidelined for a year or more. She still has EBV and has been a spokesperson for people who also suffer from it.

    It’s all caused by ancient bacteria that thrive ever so quietly in the rooths of teeth — even teeth that are apprently healthy. Over the years the use of antibiotics have made these bacterium stronger and stealthier. It all makes perfect sense and the best approach is not to have a race of people walking around with no teeth in their mouth, but to devlop powerful vaccines against them. I would bet that a tetanus toxoid booster shot would eliminate temporarily,many or all of the symptoms in about 20% of the cases. I say 20% because perhpas 20% have tetanus as the causitive agent. The reason a sore throat persists for so long is that while fighting the viral infection, the bacteria hiding in the teeth get a chance to enlarge their colony. They don’t do this in a malicious attempt to take over, but it’s some kind of mecahnism wherby they get the chance to produce more of themselves so as to evolve and get stronger. Like a man who gathers rainwater in the spring so that he can water his plants in the summer. He’s not trying to flood the world, he’s just making sure that his world has enough water for a dry season.

    I have found that a 5 minute swish and spit ritual has eased my panic disorder considerably. I don’t do it often because it’s irritating, but it gets oxygen bubbles deep into dental tissues. It doesn’t kill these buggers, but they do retreat and hide for awhile. I know that I sound crazy by giving bacteria credit for being thinking creatures because they are indeed not, but these anaerobes are literally a billion years ahead of all other life on Earth. They were the very first because they lived on an Earth with no free oxygen. When oxygen started to emerge into our atmosphere theses bacteria retreated into he mud and muck of the planet where there is no free oxygen. Tetanus needs a puncture wound to kill you because in a deep puncture wound despite all the blood and what have you, there is no free oxygen. The next best thing to a puncture wound is the roots of teeth. They are the best substitute for mud and muck a bacteria could ever want.

    I know that I have not actually helped anyone because I have offered no cure, but I am sure, as sure as I am that the sun will rise tomorrow that the growth of civilization and the cultivation of dentistry and oral hygiene taken to an extreme or not taken at all, is the root cause, as it were, of many of these post 1950 diseases. Before that a badly infected tooth simply killed someone with endocarditis or kidney failure, or it was pulled out and left as an open wound to heal as the anaerobes DIED!

    Pavel

  343. There is a strong connection between illness and teeth. I spent my childhood in the dentist’s chair and 7 years ago replaced the mercury fillings with composite material. More recently one of the crowns has fallen out leaving an open hole that I’ve yet to fix until I can afford to do so. While this could certainly be related to CFS, I’m not convinced it may be the cause. Also, vaccines are NOT the answer. Does anyone but the government know what’s in the vaccine? Mercury? Microchips? Lead from China?

    At any rate, there are plenty of antibacterial supplements that can be taken, improving the quality of the circulating blood and one could also pack the infected tooth with cloves or tea tree oil that would eventually reach the root.

  344. Pavel,

    I believe something similar. Organisms(parasites/bacteria/viruses) are becoming more powerful due to antibiotics and drug use. Our mucus membranes are the perfect habitat for these organisms when they attach themselves and start breeding. Once they get into our stomachs the body tries to defend itself sending all its blood resources to our guts, not allowing our blood to travel and maintain other cells(gums, skin, organs, brain) in the body. Furthermore the gut is damaged not allowing nutrients to be absorbed, whilst these organisms also compete for nutrients with flora in our gut. The body is under constant attack wasting resources, hence running inneficiently(fatigue). The more powerful these organisms become they are easier to spread around.

    Because these organisms cause small but persistent damage they go undiagnosed, yet they are destroying our lives. Gastroenterologists know that 1/3 of people that get gastro end up getting IBS yet they say that U have cleared the infection which is wrong! How can one have cleared an infection when IBS=enflamed gut due to infection??????

    The best cure is prevention yet how can one prevent contacting it when doctors deny its transmittable? In my case I know I got this through “safe sex” practises, but now I believe there is no such thing. Condoms do not prevent this sort of thing, that can destroy your life.

    Identifying these organisms is like finding a needle in a haystack. The only cure is vaccination. Yet it takes drug companies 13 years to develop vaccines (e.g.) C. DIff. which is the same method as that of tetanus and most others using formaldehyde. They could have achieved this in months yet they enjoy watching 1000′s people die in the name of profits gained in selling antibiotics (that only cure approx 70%) .

    I believe different organisms juiced up by antibiotics release toxins damaging cells(along with environmental toxins). These overun the immune system allowing other latent virusses (HHV1-8) to activate and in turn cause more damage to the body.

    Eight months of my life i have wasted trying to get help, yet there is none. My condition is stable yet annoying. It seems every day there are more victims of organisms such as these, YET THERE IS NO AWARENESS IN THE COMMUNITY. No one believes they just diagnose this as a mental disorder. What a JOKE. I feel its all a scam as slow disease is very profitable industry.

    REPLY: You are very right in one respect: there is no such thing as safe sex. Pathogens are often spread just by close physical contact, such as kissing. And since we have seen a rise in more liberal sexual values over the last few decades, this means there will be more and more spread of chronic germs between people, and therefore diseases like CFS. Sometimes you get a nasty virus from an encounter with someone, like the one described on this blog that gives you CFS. Other times, it may be more minor pathogen, but in the long term, it may still cause harm to your health. So the ethics of liberal sexual values are more than just an emotional consideration.

    There are other factors too for the recent increases in infectious diseases: factors such as the process of urbanization taking place all around the world, which is crowing more people together in cities, thus helping the person-to-person spread of disease; and air travel, which brings new and exotic pathogens from all corners of the the globe right to your local neighborhood.

    However, what I don’t subscribe to is the belief that “nature” is all good, and only manmade interventions are responsible for nasty pathogens. The fact is that hideous pathogens have been with the human species since antiquity. And infectious diseases were always THE leading cause of death in the past. Just a few generations ago, most people were very fearful of infections. Something like pneumonia was often an instant death sentence, and Polio was also a great worry. We should be immensely grateful that science has mostly banished such fears, via better sanitation, vaccines and anti-microbials.

    Yet science needs to do more. We are only now suddenly realizing that these viruses and microbes are also the hidden cause of so much chronic disease, like CFS. Only leading-edge medical researchers tend to be aware of this; as you say, most medical practitioners do not really think along these lines. This is the next stage: to discover the microbial causes of chronic diseases, and find effective treatments to eliminate these microbes, so that practicing doctors can then address and remedy such diseases.

    So just as medical knowledge has banished many of the “instant death” type of infectious diseases of the past, we will shall hopefully banish many chronic infectious diseases like CFS in the near future.

    In a way, it is good news that we are discovering that infectious microbes underlie some much chronic disease, in the sense that, if tomorrow someone discovered some universal anti-microbial medicine, we could then say goodbye to these infectious chronic diseases.

    - Hip

  345. Well, I have all the symptoms you describe and the doctors have not found anything. I currently have tinnitus and paresthesias, sinusitis and sometimes headache. They say that my sinusitis is allergic.

  346. I have all the symptoms, severe parathesias, joint laxity, swollen gland under left side of jaw, tender throat on the left side only, chronic post nasal drip….ive been tested for everything! im going to the mayo clinic in florida soon.

  347. Have you ruled out Lymes Disease. These symptoms sound identical to sufferers of Lymes. I am 40 years old and have had chronic throat clearing and runny nose for about 3 years now. I also get very sleepy every day and have to take naps 3 to 4 days a week. I have very little energy, terrible short term memory and have noticed a decrease in balance. A friend is convinced that it is Lymes because she, her husband and 2 of their children have been tested positive for it. I had a Western Blot but it came back negative (2 out of 5 strands). My friend says that the general health care system has raised the criteria for a positive result because of the financial implications to the health care system and that further tests by a Lymes specialist can reveal a positive result. I had to cancel my health care coverage several months ago so I have not had the opportunity to have further testing.

  348. to Scott,

    Throat clearing is my problem I have all of the above but also throat clearing, not everyone has that but we sure do.

  349. In my earlier post I said that I us a “swish and spit” regiment — I left out that I do this with ordinary hydrogen peroxide.

    thank you

    Pavel

  350. Yes, ditto, ditto, ditto. I also have most of the symptoms, so clearly either we’re all going mad in exactly the same way, or there is a real physical condition being passed around the globe.

    I’ve had this illness for about 4 years (now labelled as having CFS) and like many people have been looking for answers and trying to do my own research because, let’s face it, the medical profession on the whole do not want to know. I think it’s quite hard to get doctors/consultants to take the multi-disciplinary approach that this illness requires and also research is often controlled by the pharmaceutical industries.

    The only way forward might be for more and more people to get this thing so that it becomes a public health issue that can’t be ignored.

    Does anyone know if there is any way of surveying people to find out how many people are affected? Or how to increase public awareness? I’m sure there’s thousands of people suffering in silence who have not realised that others have the same symptoms.

    Another question I have is, does anyone suffer from arrhythmia (irregular heartbeat clearly shown on ECG) which occurs when other symptoms are worse?

    REPLY: Thanks for your comment, lindie. You touch on a very important point about the “thousands of people suffering in silence”, who have this virus, experience its symptoms, but do not know the cause. I wish we could direct these people to this blog or a similar web site, so that they can at least understand what is happening to them.

    Heart arrhythmias: I know of one person with this virus who experienced some passing arrhythmias. Many CFS viruses (especially coxsackievirus B) attack the brain’s hypothalamus, which is the controller of the heart beat. This may explain why these heart arrhythmias arise. The hypothalamus also controls numerous other critical functions of the body; this is why, in CFS, things go so badly wrong once the hypothalamus is infected.

    Another explanation for heart arrhythmias is low magnesium status. Low magnesium can by itself cause heart arrhythmias (as Google will tell you), and it is well known that people with CFS are often very depleted of magnesium. So a good daily magnesium supplement will not only help with CFS, but might also help stop these arrhythmias.

    - Hip

  351. I have been having pretty serious arythmmia recently. It is a problem that I have had much of my life off and on and is usually triggered by allergies and viral infections. Right now it is pollen season but my arythmmia is much worse than usual.

  352. Everyone of your symptoms is exactly like mine, has anyone been tested for Oral HPV as this virus causes periodontitis. The body can clear it naturally, but in some cases it can be nasty. I’m scared as this give u 10X greater chances of oral cancers compared to a heavy smoker, the longer your body doesn’t clear it the worse. Im going to get tested today. Please I hope it’s not :- <, I’m petrified since looking up what the virus can do.

  353. My Doc said he never heard of the test, rang up pathology they dont do it here in australia…. It takes 12-18 months to clear the virus, warts in the mouth only show up on people with HIV….

  354. Is there a cure for this virus? Or is the only way to deal with this virus by taking immune boosting supplements to defend this?

  355. By the way my symptoms include dizziness, leg pains (needles and pins), shortness of breath, irregular heartbeat (racing sensation that doesn’t last long), the other day i was in bed all day sleeping (had no desire to get up and motivate myself to be productive and carry out the regular activities that I would throughout the day), chronic fatigue, slight hearing loss, vision has got worse. I did realize I caught something within the first eight hours because I had a terrible sore throat, mucus, and now I permanently have swollen tonsils and tonsil stones every so often. Serious anxiety at times. Kidney pains at times. My stomach is always messed up too (very sensitive). I might have missed some other symptoms but I’m sure this is most of the symptoms that are occurring quite frequently for myself.

  356. I don’t think this is a highly contagious disease. I have been doing some research and anyone can cure it. All you have to do is take fish oil and vitamin C for a couple of weeks every day,and you’ll soon see a huge difference.

  357. Then I should have been cured ages ago. I have been taking Vit C and fish oil every day for years plus a lot of other stuff designed to boost the immune system. Still caught it, still got it.

  358. I am reading this and feel like I have almost all of these symptoms… I am a 21 year old male. I have been feeling nervous and thought it was my fight or flight being activated but I’ve been feeling less competent on my feet. I have had these weird red marks on my skin that my doctor gave me a cream for which didn’t really get rid of it. I have a fungal infection that I’ve never had before. I’ve been depressed and moody and feel strange even at the last family gathering..

    This is very worrying to me because my girlfriend just moved in and I don’t want her to have the same things she has knee problems already.

    I don’t have all the symptoms but the ones I have had really worry me sometimes. I had horrible stomach pain about a month ago and loss of appetite and fever and then got prescribed anti biotics which did not really help and then the other day this fever and headache just took over me… and I had this throat pain and then the next morning I coughed up blood and since my headache and fever are GONE but I’ve been coughing up blood for a few days now and my throat and chest are really hurting…. lately the weird condition on my hands (inbetween the fingers where the webs are, and a small red bloch? on my wrist) is staring to go away and I feel less dizzy but I fear it’s because the virus is busy elsewhere?

    I used to be an alcoholic about 2 years ago and for the last maybe… year alcohol has been what’s described here.. it just makes me feel lousy and I don’t enjoy it. I am quitting smoking cigarettes but still smoke cannabis.

    REPLY: Many thanks for your comment. Your symptoms sound very much like they are from this virus, but I would see a doctor about the coughing up blood. I suggest you start reading a bit about chronic fatigue syndrome, which is what this virus has probably kicked off in you. – Hip

  359. To the moderators, have u been tested for Oral HPV as this is a very powerful virus know to cause periodonditis, for females HPV dna test is available but for males nothing. I’m trying to rule this out, Im seeing an ENT specialist and on a waiting list for a colonoscopy, perhaps they can do biopsies to test for this.

  360. have a look people HPV is impossible to prevent, most people clear it but some people get bad strains and cannot easily clear it… this maybe what is causing chronic fatigue.

    Human Papilloma Virus

    REPLY: A very informative video on human papilloma virus – many thanks. Certainly makes you think, and this video echoes what someone (“Warning”) commented about earlier: that there is no such thing as safe sex. However, this virus I have is not HPV, since HPV does not have the ability to cause neurological symptoms. In fact, HPV produces zero symptoms in most people. In addition, HPV is NOT a systemic virus. That is to say, HPV cannot spread throughout the body on its own, whereas my virus is very capable of spreading throughout the body from head to toe. So it cannot possibly be HPV.

    – Hip

  361. Hello, Thank you for posting all your information on the net regarding these serious viruses. I have found it very helpful as it seems to explain what could be the cause of many of my, and my children’s, problems. Trying to find the cause of our problems, I looked into Rife technology. If you’ve never heard of it, there are various sites devoted to Royal Raymond Rife, the inventor of the technology which uses radio frequencies to vibrate microorganisms to death. There are a couple of books on Rife’s life, including one with the word “persecuted” in the title. I bought my own Rife machine, called an “F-Scan” and use it to kill viruses but there are other machines available, too. Also, on YouTube, Dr. Robert Rowen says that ozone therapy (and similar therapies) can destroy viruses. I plan to look into that next. I hope one of these therapies can help you, you’ve certainly suffered a great deal.

    REPLY: Hi Linda. There are plenty of herbs, vitamins, and other supplements that can help with the chronic fatigue syndrome symptoms your family are suffering from, such as these supplements. However a Rife machine will probably not help at all (and the web sites that promote them are full of pseudoscientific Mickey Mouse nonsense). But at least these machines are not particularly dangerous. By contrast, note that ozone water can permanently damage the intestines in certain circumstances; and in any case will do little to help your symptoms.

    – Hip

  362. Hi Linda,

    I have done a lot of reading on the various electrical devices including the Rife Machine. Many do not know that Rife worked with radio technology pioneer, Lee De Forrest and that his work was highly regarded at one time. He fell afoul of the AMA, a corrupt organization that would promote all sorts of medical treatments if they got a share of the proceeds. The AMA worked with the tobacco industry promoting smoking and continued to do so for years after the original surgeon general’s report on the adverse effects of smoking on health.

    When Rife refused to do business with them the AMA began a smear campaign against him to discredit his work which worked quite nicely and other medical journals soon refused to publish his work. A modern version of Rife technology uses lasers and is being hailed as a potential breakthrough in treatment of infectious diseases. We will see if the medical industrial complex tries to kill it.

    Meanwhile, anyone wanting to experiment with the use of weak electrical current for treatment of diseases can build their own devices for a few dollars. These will not have the frequency tuning capability of the Rife machine but at such a low cost there is little reason not to try it. I have built one of these recently and have found that it greatly relieves the shortness of breath and sinus congestion I tend to get from pollen allergies exacerbated by the virus. I have not been using it long enough to see what else it can do.

    There is a yahoo group dedicated to this which posts instructions for building various types of devices for experimentation. You can join this group and get access to plans and testimonials. They consider themselves an experimental group and do not give medical advice. You can sign up at:

    http://health.groups.yahoo.com/group/microelectricitygermkiller/

    REPLY: Many thanks for your comment, Phooph. Just to clarify: Phooph is talking about two things here: Microcurrent Therapy (weak electrical direct current treatment), and Rife machines. Whereas microcurrent therapy is an accepted, reasonably effective and inexpensive medical treatment, Rife machines are mired in pseudoscience. Rife machines can be extremely expensive for what they are, whereas microcurrent therapy devices are cheap, and, as the above link provided by phooph nicely shows, you can even make your own for next to nothing. I have experimented with microcurrent therapy myself, and have found it quite effective in improving my blurred vision (when applied to the eye region), though the improvement does not last for more than a day or two.

    Microcurrent is known to boost the energy output of mitochondria as much as 500%, so it may help with fatigue.

    Microcurrent therapy may also have benefit for curing bacterial infections, when used in combination with antibiotics. It has been shown that microcurrents can help destroy the biofilm walls that bacteria create around their colonies to protect themselves from attack. This biofilm-destroying capability of electric currents is called the bioelectric effect. If you weaken these biofilm defenses using the bioelectric effect, then antibiotics will be able to better reach and destroy the bacteria. So a microcurrent device, plus antibiotics, could be useful and very cheap therapy for anyone with a bacterial disease such as Lyme disease; and microcurrent plus antibiotics therapy may better eliminate the frequent bacterial co-infections that arise in chronic fatigue syndrome.

    So it is well worth experimenting with microcurrent therapy. However, I am not sure I can say the same for Rife machines.

    Rife machines use an alternating (oscillating) current, from a few Hz, up to around 10 MHz. The people who sell these machines claim that they can kill viruses and other microbes by forced resonant destruction of the outer shells of these germs. However, the resonant frequency of virus shells (capsids) is MUCH higher than the frequencies these Rife machines produce: viral capsid frequencies being in the 30 to 300 GHz range – that is, over 3000 times higher than the 10 MHz output of Rife machines.

    This is why Rife machines are mired in pseudoscience. I am not saying that they are entirely worthless; they may indeed have some benefits; but the theoretical claims behind them are unfounded and wrong.

    As Phooph points out, there is legitimate research going on at present that employs special lasers to generate such GHz frequencies, which have successfully destroyed viruses; so there is nothing wrong with the idea of vibrating viruses to death, providing you use the right frequency and the right equipment. The Rife machines do not use the right frequency for viruses, so therefore it is unlikely they will have any effect on viral infections. However, if you have a Rife machine, if you set it to a very low frequency, it can be used as a microcurrent therapy device, albeit an expensive one.

    It should be said, though, that it is always important to keep an open mind, and to try as many healing systems as you can.

    – Hip

  363. I am going through something similar to this myself at the moment, and my take aways so far would be to not under-estimate the destructive nature that the associated stress and anxiety a chronic infections can so easily cause.

    As well as the ‘stress’ mechanism restricting the bodies ability to recover, it can in itself cause some nasty symptoms and further symptom developments.

    Additionally, talk to your doctor about genetic conditions that may manifest themselves as a chronic virus. An example of this (and easy to test for) is haemachromatosis, which is simply your body absorbing too much iron. The iron builds up in the blood, liver, heart, Pancreas, and causes all manor of mild to moderate symptoms, including things like sore throats, mood swings, anxiety, irratability, loss of libido, lethargy, skin pigmentations and on and on.

    People only normally get diagnosed when symptoms start effecting the heart or liver and they get referred to a specialist who looks into this stuff.. normal blood counts won’t look at ferritin levels, so supposedly normal results can hide whats going on and its generally seen as beyond the scope of a GP.

    Worst thing is though, that simple blood letting will treat this and unless serious damage to heart and liver have taken place, you will live a normal life once diagnosed and treated.

    So in summary, keep on pushing those doctors.

    REPLY: Many thanks for your input, James. Interestingly someone else on this blog (Asklepius), who believes they caught this same virus, was also diagnosed with high ferritin levels (high blood ferritin is linked to an abnormal build up of iron in the body). People with hepatitis C often have high blood ferritin (especially if they also have diabetes). Many of the symptoms of hepatitis C will disappear once these ferritin levels are reduced.

    As you say, blood letting (phlebotomy) will lower ferritin, as will the supplements inositol hexaphosphate, and milk thistle. – Hip

  364. The heavy dosing of natural antibiotics hasn’t helped. At my husband’s insistence, saw his doc only to find out I have high blood pressure and thyroid is on the low side so got a scrip for Armour Thyroid. His advice was to lose weight and claims the dizziness and pressure between the eyes is a symptom of high blood pressure. Nope. Freebie drugs he gave me don’t control any of these symptoms, nor do garlic, hawthorn, fenugreek or any other naturals that supposedly lower high blood pressure. Mentioned Lyme to the doc and shot down that theory cuz I don’t spend enough time in the woods even though 5 years ago (onset of symptoms) I used to do quite a bit of hiking here in Colorado.

    I have a Bob Beck type device that I’ve used off and on for the last 5 years. This time around I’ve been using it daily and my sinuses react like I’m getting a head cold. This is temporary so I’m guessing it’s a Herx reaction. Supposedly, the frequency kills pathogens as the blood circulates past the electrodes strapped to the wrist. The unit also makes inexpensive collodial silver which doesn’t seem to have any effect but I’m only taking small doses. The other part of the protocol is ozone water and as of yet am not convinced of it’s therapeutic value. While supplementing with greens such as wheat grass and barley may be slow they do provide good nutrition as well as alkalizing benefit. My urine PH is 5.0.

    In the past I’ve done hydrogen peroxide drops (food grade) and it didn’t seem to do any good but feel the H202 has value when used externally with epson salts in the bath. At least I feel really clean afterwards!

  365. Hi my dad has similar symptoms to your self , i wanted to know if u still have this infection or if u have had it cured? As my dad has been to many doctors and they still cannot diagnose anything, he has had the ulcers for about 6 months, but has had the ongoing sore throat for year and a half. Also is there a name for this ilness? Also if u could tell me which foods are best for him to eat then that would be very helpful too.

    thankyou

    samera

    REPLY: Search Google for “Chronic Fatigue Syndrome Symptoms”, and see if these match what your father has. Some people have tried a raw food diet to improve their chronic fatigue syndrome symptoms. In most cases, the infections that cause chronic fatigue syndrome remain indefinitely. – Hip

  366. How are you now? I have similar symptoms – and a lifetime of autoimmune funkiness background

    REPLY: It’s ongoing, though certain supplements have helped lessen some symptoms.

    – Hip

  367. http://www.adaptimmune.com/

    These people have the right idea to cure disease, engineering NK-T cells from people with stronger immune systems, to seek and destroy disease in weaker humans. It seems like a great approach. check it out people.

  368. Also checkout the video:

    http://www.adaptimmune.com/research-development/

    Any thoughts? It looks like promising work…. Hopefully it takes off.

    REPLY: Many thanks for that link, Unbelievable.

    It looks like a very clever idea. They seem to have focussed their clinical trial on T cells specifically engineered to seek out HIV-infected cells. In the future, it would be nice to see them try to engineer T cells to attack coxsackievirus, Epstein-Barr virus and HHV-6 infected cells, as this might be the long awaited cure for chronic fatigue syndrome. – Hip

  369. They can make T-cell responses hundreds of times more powerful against any infectious disease (virus/ bacteria/ parasite) or cancer. This is an extraordinary claim but they have already proven it works on HIV & cancer in the lab, clinical trials this year will hopefully show it works in humans. This research really needs to be fastracked, it could mean the end of cancer and infectious diseases(what a wonderful world that would be).

  370. Hopefully Adaptimmune’s adoptive T cell therapy will be able to overcome the IMMUNE EVASION tricks used by viruses like coxsackievirus B. Most human viruses and bacteria use immune evasion tricks: these immune evasion tactics disrupt the immune system’s functions and communications.

    In coxsackieviruses, one immune evasion tactic employed by this virus is to remove all the surface proteins from the human cells it invades. By removing these protein markers, it effectively makes that infected human cell invisible to the T cell, so that the T cell cannot destroy it.

    But hopefully Adaptimmune’s supercharged T cells can overcome this immune evasion trick, so the T cells can do their job of destroying these virally-infected cells.

  371. Hip,

    I forgot to mention the puckered wrinkled skin, sore toes and pain the the balls of my feet. depression is awful, its a case of stop the world I wanna get off.

    How are all your ailments now? did you have any itching in the early days?

    regards jackie

    REPLY: The pins and needles (paresthesias) I have can be described as itchy. This itchiness is irritating sometimes. Depression is often strong. Brain fog and fatigue get worse over time.

    Suggest you look at the treatments page and try some things. Please keep us updated on your situation. – Hip

  372. Wondering if this is what I have. My symptoms came on suddenly 10 months ago continue today and are as follows.

    Started with headache and fatigue no fever. Mouth and eyes got dry. Cheeks inside of mouth and tongue got swollen. tongue is whitish. Bowel movements became abnormal. All kinds of bowel noises that are constant. Some skin crawling not pins and needles. Fatigue, Anxiety and depression. When I get an acne pimple on my back it seems it takes months for it to heal, so i heal more slowly now.

    3 doctors say i’m fine and say it’s anxiety. One doctor actually said i’m delusional. But they are all wrong. I had lots of tests done. HIV, hepatitis, autoimmune diseases. What is freaking me out though is this. An infectious disease doctor found high levels of “circulating immune complexes” ( look it up) and said that my body is fighting something but he doesn’t know what it is.

    I believe that when doctors don’t have the answer they blame it on anxiety. I know I’m anxious but it’s because of my symptoms. It’s making my life miserable. I’m hoping and praying I get better with time.

    I also believe whatever this is is a immune system concern.

    These links are not about HIV but about what I and most of you believe is something not cannot be detected yet by modern medicine.

    Please read:

    http://www.medhelp.org/posts/HIV-Prevention/HIV-symptomslow-CD4–but-HIV-negative/show/410349

    http://www.medhelp.org/posts/HIV-Prevention/Idiopathic-CD4-T-lymphocytopenia/show/402632?personal_page_id=103367&post_id=post_2356849

    REPLY: Hi Paul. These two links are about Non-HIV AIDS.

    There was an earlier discussion on this page about Non-HIV AIDS, which is properly called Idiopathic CD4 Lymphocytopenia (ICL). Idiopathic CD4 Lymphocytopenia is diagnosed when there is a CD4 count of less than 300 cells per mm3 of blood (and where AIDS is ruled out, via a negative HIV test). Normal CD4 counts of healthy adults are in the range of 500 to 1500 cells per mm3 of blood. You can also diagnose ICL in adults by checking your lymphocyte count: if your total lymphocyte count is less than 1000 per μL, this means you have ICL (when AIDS is already ruled out, via a negative HIV test). An adult’s normal lymphocyte count is in the range 1100 to 4800 per µL.

    So if your total lymphocyte count is in the normal 1100 to 4800 per µL range, then you do NOT have Non-HIV AIDS / ICL. A total lymphocyte count is performed as part of a complete (full) blood count. So it is VERY easy to check that you do not have ICL just by looking at your blood count results. – Hip

  373. Hi Paul,

    I am in the same situation only this has been going on for nearly 4 years. Is your skin itchy, as it changed in appearance?.. At the moment I am trying colostrum and lactoferrin, this seems to have calmed things down a bit.

    But it comes and goes now, whereas in the early days it was constant, maybe the anxiety was fuelling it. I also have lymph problems, if I cut or injure myself the healing process takes ages and I always notice I have clear lymph liquid oozing from it, what about you?

    Its tiresome but keep looking there must be someone who knows something.

    JJ

  374. Hi Hip,

    Being totally desperate, which of course we all are, I had my bloods done (on numerous occaisions).

    my cd4 1094,

    Lymphocyte count 2.43

    neutrophil count 4.58

    High monocytes .91

    high tsh 6.46

    low alkaline phosphatase

    I also sent some samples to america ( i am in uk ).

    They informed me that my total siga(gut immune system)

    has registered at 101 it should be 400-800 also my saliva had very little siga.

    They named about 5 pathogens in my gut that should be under control but are running riot.

    I have read that continued stress stops production of the immune siga, but when you are sick and can’t find answers your mind is all over the place and you pile more stress onto your system. Summer is coming and I dread it showing my wrinkled skin, I will just stay indoors and avoid people sad eh.

    Yes this is truly a misery disease.

    Jac.

  375. Hi unbelievable,

    Sorry for delay, had to hunt for it.

    Klebsiella/enterobacter/serratia group – moderate

    Enterococcus species – moderate

    Alpha hemolytic Streptocococcus – rare

    Corynebacterium species – rare

    other findings…..

    non pathogenic E.coli – moderate

    Toxoplasmosis – Equivocal

    Entamoeba histolytica – Detected.

    No yeast or parasites ( which I was hoping to be positive )

    Any Ideas..

    regards Jac

  376. Hey Jackie,

    No, my skin seems the same.

    To Hip,

    Looked at my past labs and my absolute lymphocyte counts where 1330 before this started the two tests after the recent being this past January were 1380 and 1330. So it seems ICL, if what you say is true, is not an issue.

    Could you comment on my positive test result for circulating immune complexes?

    I forgot to mention i have positive tests for saccharomyces cerevisiae antibodies. i know it’s a marker for Crohn’s but the doctor never actually came out and said that’s my problem. I think he’s just as confused as I am.

    REPLY: Google told me that: circulating immune complexes are linked to autoimmune-diseases such as Crohn’s, lupus, rheumatoid arthritis and vasculitis. Slightly increased circulating immune complexes are sometimes also found in healthy individuals.- Hip

  377. hey Paul,

    Just thought I would mention, the full lymphocyte count that you mentioned… The way I understand ( and I may be wrong ) is that the full lymph count is made up of many cd counts e.g. cd4 cd8 cd3 and many others. So even though the lymph count seems the same the make up may be different. e.g I have very high cd3,but very low cd8 ( which are the killer cells. put them together and it all balances out and looks normal…. if somebody knows if this is right or wrong please let us know. Jac.

    REPLY: Yes, that’s right: the lymphocyte family of blood cells includes: helper T cells (CD4 cells), cytotoxic T cells or killer T cells (CD8 cells), natural killer cells (NK cells) and B cells. When you get a lymphocyte count, it includes the sum total of all these different types of lymphocyte cells in your blood.

    In fact the lymphocyte count method is an approximate way to test for ICL. The proper way to test for ICL is by getting a CD4 count, and if this is less than 300 per mm3 of blood, then you have Idiopathic CD4 Lymphocytopenia. But ICL is a rare disease.

    Incidentally, in chronic fatigue syndrome, there often problem with natural killer cells: the number of NK cells in the blood is normal, but these NK cells exhibit decreased function, because they fail to activate, and therefore fail to destroy virally-infected human cells.

    – Hip

  378. I was just going by what Hip mentioned a few posts ago referring to total lymphocyte counts and Non-HIV/ICL.

    quote:So if your total lymphocyte count is in the normal 1100 to 4800 per µL range, then you do NOT have Non-HIV AIDS / ICL. A total lymphocyte count is performed as part of a complete (full) blood count. So it is VERY easy to check that you do not have ICL just by looking at your blood count results. – Hip

  379. Jackie,

    As I understand it Amoeba Histolyca is nasty, didn’t they give u antobiotics for that? It could be causing all the imballances in your body.

    Entamoeba histolytica – Detected?????????? <<———-that is a parasite

  380. Hi unbeleivable,

    It seems it is part of the natural human intestinal flora, but gets out of hand when immunity is affected. But yes I did have treatment for it, to no avail. The amoeba hasn’t caused the heart palpitations, wrinkled skin, muscle aches and pains, nasty mouth, mood swings, depression, suicidal thoughts, aggression, chills sweats joint pains, headaches, numbness, pins and needles etc. has it.

    jac

  381. Hi Unbeleivable,

    I sorta did know, Isn’t it a nightmare….The kiniesiologist I have been seeing says I have pin worms, leaky gut and candida. All doctors tests state no parasites no yeast. So I have been treated for that without any improvement. I feel like a hamster in one of those funny wheels. I have found another road to go down, its called NES nutri engeretics, I think its some sort of body chemistry detector. I have looked at lyme, bartonella, babesia,Histoplasmosis,Tularemia and so this list goes on, the one thing that baffles me is that some of the diseases that hip mentions earlier are self limiting.. after 4 years I don’t think it can be one of those. …Feel so lonely and helpless at mo. Uphill struggle. Jac

    REPLY: Hi Jackie. A word on self-limiting pathogens: many viruses such as coxsackievirus B, Epstein-Barr virus, human herpes 6 virus, parvovirus B19 can cause the symptoms described on this blog. Although in most people, these viruses are self-limiting, in around 0.2% of the Western population, these viruses do not limit themselves, but rather run continually, causing these symptoms (the symptoms themselves are usually collectively labeled as chronic fatigue syndrome). Many doctors still “do not believe” in chronic fatigue syndrome, so it can be difficult to get a diagnosis.

    The only divergence from the typical chronic fatigue syndrome symptoms is the unusual skin wrinkling caused by this virus I have, and perhaps you have too. And the intensity of the anxiety symptoms it can produce is unusual. Otherwise, this virus I have has caused a fairly classic case of CFS.- Hip

  382. Hi Jackie,

    what did you mean by “nasty mouth”? because my mouth is abnormally dry especially when i wake. Since I was tested positive for circulating immune complexes. I read that these complexes that aren’t removed by the body are deposited throughout the body, one place might be the salivary glands.

    Oh and my tongue is a bit swollen, is yours?

  383. Hip,

    So my consistent lymphocyte counts of 1330,1380 and 1330 don’t mean a thing as far as ICL is concerned? Or should i have seen some change? 1330 was way before my symptoms started.

    REPLY: No they do: your lymphocyte counts give a good indication that you don’t have ICL. – Hip

  384. Jackie,

    I have also been using the NES system since last October and have found it reduces the symptoms quite a bit. Every time I get a scan and start a new round of treatment my symptoms get worse and then slowly improve as the treatment takes hold.

    I asked how long it took the inventors to reverse their chronic fatigue and was told it took two years so I am not expecting quick results.

  385. Hi,

    Nasty mouth….mmmmm, how best to describe it, hot, burning, yellow/green coating, swollen, scalloped onsides, horrible taste etc….

    Paul, I would get your lymp results broken down into the cd sections, this will give you a better idea if everything is in the normal range, or if some are high and some are low.

    I think an immunologist can do this, probably your doc if you ask.

    Phooph,

    do you think the NES is a good way to go?

    One of the main problems I have is that I know I have infected others, and living with that is very hard.

  386. Paul…,

    This may sound crazy, but my husband always wakes up with a terrible dry mouth ( he is poorly too )… He sleeps with his mouth open, it doesn’t matter what time he wakes 3 4 5 6 in the morn, he needs a drink, his mouth is bone dry. just a thought, which of course you have probably ruled out. jac

  387. Hip,

    Can I ask you a couple of questions..how do you know exactly when you contracted said virus, I am pretty sure I know, but it has been put to me by a therapist that the incident my have just been the trigger.

    The other question… If you run your nails or similar, across your lower tummy, do you get sensations down your legs?

    Sorry for silly questions….Jac

    REPLY: I contracted it from kissing, as did lots of people. In fact, this question has been covered before in the comments on this page: do a find (search) on this page on the word kissing. – Hip

  388. Jackie,

    I’m not a mouth breather. Ever since this started my saliva production had diminished. If i suck on candy it will flow.

    Oh by the way tomorrow i have an appointment with an acupuncturist since 2 doctors said they see nothing abnormal and one that said my body is fighting something but doesn’t know what it is.

    i read someone had good luck with one.

    See, when my doc looks at my tongue he said it looks normal because he sees lots of tongues but when he says that, to me it’s just a general assumption. I know what’s not right with my body he doesn’t live with it , I do!

    p.s. what did you mean when you said ( he is poorly too ) referring to your husband

  389. Sorry Hip, Short term memory probs… kissing, the same as me probably…….

    Paul,

    Husband has the same symptoms…. but has serious ostrich syndrome. When he gets his head out maybe he will be in my corner and help with a solution, until then I just have you guys.

    Jac

  390. That website made my head spin.

    Well as i sit here with my gut making all sorts of noises. Do any of you get that too? Like constant grumbling from your gut?

    My doc said just to ignore that. Can you believe he would say that?

    REPLY: Yes, it is a bit packed with info. A simpler CFS symptoms list is here. Try some antiviral herbs for the stomach rumbling; they can help a bit. – Hip

  391. Yes I get that all the time Paul… If I push my tum out, I get the weirdest noises. I have just been on the cfs website above… very interesting and scary.. as this is a post viral syndrome, question still lerks…. what virus… as maybe its the after affects of say ebv, which is very contagious and can be passed by kissing etc.

    Some of my friends are getting swollen lips at the moment, that wasn’t mentioned in the list. But hey lets not give up.

  392. Hi Jackie,

    I think NES has been a big help and should be part of a larger program. I also eat a very healthy diet, no sugar or refined foods, lots of veggies cooked and raw, fresh fruit, good olive oil, coconut oil (good for keeping candida down). I am not a vegetarian but prefer fish and fowl. I did have a buffalo burger for dinner tonight. Was ravenously hungry for the last two days and don’t know if it is related to the virus or that the weather got cold, which will trigger off a food binge for me a couple days before it happens. I am also having a lot of the digestive symptoms and make rejuvalac fortified with a probiotic powder which I drink every day. I think if I drank more it might be better still.

    The NES seems to be keeping my energy level up and symptoms down. I started last October. How long have you been using the NES protocol?

    phooph

  393. I seem to be having more facial irritations and it itch slightly, facial rash, slowly develope lesions on the face. Anyone experience this? If so has someone found something to help, creams, ect. I have use some steriods, cream for fungus and metro Gel but slowly gets worse. If anyone finds things to help symptoms then throw it out there. We just have to keep working to find an answer.

  394. Hi Nim,

    I did in the early days, usually over my cheekbones under my eyes and sometimes around the corners of my mouth.

    I also tried everything, pure aloe vera helped, i didnt know if to moisturize or to dry with powder, i dont remember them itching though.. I did use a fungal cream, that worked, but didnt use it on my cheeks,

    Jac

  395. Hello

    I was wondering if anyone experienced bloodshot red eyes with their sore throat and alternating dark green and clear mucus.

    Thank you.

  396. Yes with me the bloodshot red eyes and dry eyes are causes from what is or mimics an autoimmune of the eyes. The only thing that has helped with eyes Optiva which works well with keep your eyes moist. Get plenty of sleep and try to not focus on stress. Restasis possible is possibly something i will have to look at in the future. I am trying to avoid it if possible. I have seen 2 opthomologists who have said the same thing. No problems with the eyes in the exams. Just more blurry. Hope this helps some. I will post anything else I find.

  397. Nim, thank you very much for your reply. My doctor prescribed Ciprofloxacin. Have you had this? If so, did it work for you? Did you have a lot of cold that leaked from your eyes while you slept? Thanks again for your response.

  398. Malinda,

    Yes i have that about a year ago. It did not seem to help for what i have but it might help with you. I hope it does.

  399. I have dry eyes as well and every morning pull strings of mucus from them. Like Paul, I have noisy intestines and sometimes feel movement (gas?) that feels constrained in a tube near the stomach and can occur whether I eat or not. (Fresh organic diet for last 10 years)

    5 years ago I was certain my ailments were caused by parasites but have yet to see any more than rice looking things in the stool which may be just undigested food like almonds that I snack on. I would think the black walnut and wormwood etc would have killed ‘em.

    While I’ve progressively suffered for the last 5 years, my husband is unaffected. He’s the same energetic over-achiever today as he was when I met him so it seems unlikely that I contracted this by kissing or that it’s contagious. This is a huge concern because I’m going to become a grandmother in a few months and am wondering if I should quarantine myself from the baby just to be safe.

    REPLY: Since you said in an earlier comment that you do not have the sore throat symptom, this means you will not shed many viral particles in your saliva, which in general makes you much less contagious. – Hip

  400. Hello,

    Thanks for this very helpful and instructive website.

    I have most of the symptoms listed above particularly a horrible sore throat that has been going on for 43 days and that doesn’t want to go away. The doctor has ruled out a bacterial or fungi infection (I had few tests and swabs, ATB) and I do truly believe it is a viral infection. I had Mono ages ago so this can not be the case. I did panick and had also an HIV test 48 days after the “intimate contact” and it was negative.

    My questions:

    1) can we rule out an Hiv infection after 48 days if it came negative? I know it does take up to 3 months to detect antibodies.

    2) For people affected with the virus you’re talking about, is amyglalectomy a good option in order to get rid of at least the sore throat? Or is it not a good idea as you will weaken your immune system which already weakened?

    Great thanks

    very helpless Amy,

    REPLY: Hi Amy. I think you mean adenoidectomy or tonsillectomy rather than amyglalectomy. Amyglalectomy is the removal of part of your brain (although like many people here, my brain feels so useless on some days, that I probably wouldn’t even notice if a bit of it was removed!).

    As for removing your tonsils or adenoids: the sore throat element of this infection is the least significant symptom really. It is the long-term deep fatigue, cognitive difficulties, loss of motivation, etc that are the real problems, and these, unfortunately, will not be fixed by removing tonsils or adenoids.

    HIV would not cause the symptoms you have. At most, you might experience a mild flu-like illness for a few days or weeks maximum on catching HIV.

    – Hip

  401. Amelie elisa tests are accurate after 12 days, request a PCR test it costs $$ but will tell u now for sure. Its probably this undiagnosable virus which is simple to catch but there seems to be no help for it……..

  402. I’ve have some of those symptoms you describe. I’ve been constantly sick since May of last year and been to countless doctors and specialist and found nothing. I’m curious to know how you got diagnosed with this virus?

  403. Thanks, Hip. After reading the BadBugs website it seems more likely that my CFS is bug related since I’ve been to Mexico 5 or 6 times over the past 20 years. I’ve also been to Jamaica which may have added to the viral load.

    My GI tract has improved by adopting a gluten-free diet and the only dairy I consume is a splash of half and half in morning coffee or tea. The immune boosting herbs might be helping too but so far are doing nothing for itchy, crawly skin or increasing leg and hip pain.

    Some days I’m able to use my gravity inversion machine for spinal stretching but the last 2 days have been too nauseated. I have a low white blood count so my theory is, the herbs do their job, and the WBC can’t keep up with the die off accounting for a couple of really sick days among days that I feel more “normal”.

    Maybe the limbs are last to heal. Right now I can’t stand or walk for more than 10 minutes at a time.

    I’m thankful that I found this site. It really helps with the loneliness of having a debilitating disease that is seemingly uncurable and rarely diagnosed.

  404. Rob… no doctor takes it seriously, thats just it u cant get diagnosed as this virus/bug does not cause enough inflammation in the body for doctors to care. Their attitude seems to be ‘shit happens’. There is so much disease out there yet no warnings. I get the feeling its just a money making scheme, as chronic disease is profitable for pharmaceutical companies.

    Even with swine flu that kills they are not doing enough. “go to your local GP if u have flu like symptoms” and spread it around a bit while ur there….. Demand drives the economy….. So unethical

  405. Hip,

    I’m thinking this may be classed as inflammatory bowel disease (IBD). A gut infection probably uses up the body’s blood resources (due to how long the intestines are) causing fatigue. Gut inflammation stops nutrient absorption. Lack of blood resources wasted in the gut would mean other areas of the body would not be maintained. Although they say IBD is not contageous it probably depends on the individual’s immune system /exposure and pathogen type.

    http://www.ccfc.ca/English/info/ibd.html

    “extra-intestinal manifestations of IBD. Up to one-third of patients will have one or more of these extra-intestinal manifestations. Virtually any organ may be affected but most commonly these involve joint, skin and eye problems.”

    REPLY: There may be some overlap to CFS; but on the web page you list, it says “Most people [with IBD] experience periods of remission and flare-ups of the disease”. I don’t know about you, but my symptom are constant.

    Interestingly, however, I just read now that Irritable Bowel Syndrome (IBS) and CFS frequently go together. – Hip

  406. Hi people!

    I think many of us have many of these symptoms and I understand that there are many viruses that might be at the cause of a person’s symptoms, so here’s my question to you all, actually its a request to anyone who knows of a doctor willing to do extensive virus testing:

    Can you please list the name of any doctor (as well as his contact info, website and state and or country) who is willing to do extensive viral testing. Please list what kind of doctor he is also. I would love to see an infectious pathology expert who could get down to the bottom of which virus is plaguing me. I live in France so I know I speak for everyone everywhere when I say both U.S. and outside USA info is appreciated.

    REPLY: Any of these CFS doctors will do viral testing: Dr Chia, Dr Montoya, Dr De Meirleir, Dr Levine, Dr Lerner, Dr Chenney. The nearest one to you is Dr De Meirleir at Redlabs (Belgium). Contact details for the others is on this page of the blog.

    A simpler way to get tested is to find a private doctor in your city, arrange an appointment, and ask them to send a blood sample to a pathology lab for CFS virus testing.

    Let us know your results, if you go. – Hip

  407. Hip,

    I read your article with great interest. It seems like forever that I’ve been constantly stuffy, sore throat and tender lymph nodes on my neck and jaw. More severe though are my exact symptoms of fatigue, decreased mental awareness, apathy, almost non-existent libido, spells of dizziness, numbness and skin crawling and becoming more and more emotionally, how did you say it.. ‘feeble’.

    Today is better than any of the last 3 weeks. I actually had the energy to read the website and respond. Yesterday I got up, tried to get going, only to lay down for 3 hours for a nap, got up only to ly on the couch for a couple hours, then back to bed for another 1 1/2 hours.

    I am on the verge of losing all my clients and am reclusive even to my friends and family. I cannot even muster the energy or motivation to go see my kids or grand kids. I’m am almost completely withdrawn and and socialization is stressful.

    While reading your comments, it’s as if I had written them myself. I have tried antidepressants, mood stabilizers, anti-biotics, supplements galore and am to the point of simply being miserable. This is not living, it is purely existing.

    This morning, I told my girlfriend that I feel ‘as if my brain was swollen’. I read all your comments and symptoms and brain inflammation is one of them. Can any type of brain scan show this such as an MRI?

    Also, my ears tend to ring and today my glands are more tender than yesterday and my head and arms feel numb, yet I’m mentally clearer and obviously have a tad more energy. I still have lots of pressure in my head, sinuses are tender too.

    Thanks for your work on this website.

    Don

    I am now going to go to the treatment section.

    REPLY: Thanks for your comment Don. White matter lesions in the brain show up on the MRI’s of some chronic fatigue syndrome patients, but I have not heard of this being used to diagnose CFS (as they also appear in smaller numbers in some healthy people).

    I also often get a feeling as if my brain is swollen. I think this is in part due to the sinus congestion, because the pressure feeling mostly goes away after I clean out the sinuses using nasal irrigation. Cleaning out the sinuses also reduces anxiety levels. – Hip

  408. Thank Hip

    It’s all there in the link u provided.

    INTESTINAL DYSBIOSIS

    http://www.redlabs.be/red-labs/our-science/intestinal-dysfunction.php

    REPLY: Many thanks. Isn’t it amazing how a single virus like Coxsackie B (or Epstein-Barr virus) can cause so much havoc in so many different organs in the body. But it is not surprising that the gut is thrown out on normal functioning, since the gut is the main area of colonization and replication for the coxsackievirus. And since coxsackievirus is able to throw the immune system into disarray, it is not surprising that an overgrowth of secondary opportunistic bacterial pathogens then appears in the gut.

    It is such shame that that coxsackievirus was not included in the polio vaccine when it was developed. Poliovirus and coxsackievirus are very similar (they are both in the enterovirus genus), and in fact coxsackievirus was discovered in the 1940s, when the research into the poliovirus was being conducted. Since coxsackievirus does not cause paralysis like the poliovirus does, no vaccine was developed for it.

    Evidence is accumulating implicating coxsackievirus as a major (if not THE major) cause of chronic fatigue syndrome (as well as type 1 diabetes, sudden heart attacks, etc). But the authorities are far too slow to respond in terms of developing a vaccine or an effective antiviral drug for coxsackieviruses B1 to B6.

    Update: I have just found online this book called “Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses” which has a nice chapter on illnesses that overlap with chronic fatigue syndrome, such as allergies, autoimmune disease, generalized anxiety disorder, Gulf War syndrome, irritable bowel, Lyme disease, major depression, multiple sclerosis, post polio syndrome, Sjogren’s syndrome (dry mouth and eyes), systemic lupus erythematosus. It also has a good chapter that explains all the symptoms of CFS.

    - Hip

  409. Well I seen the acupuncturist last Tuesday and Thursday. She told me straight up after looking at my tongue. ” your fatigued alot” she told me unlike western medicine they are able to tell alot by just looking at your tongue. She also told me that I have a deficiency,because of the cut that runs down the center of my tongue. which is most likely nutritional and has to be somehow related to the grumbling in my abdomen.

    What she told me my doctor dismisses as anxiety. What blows me away is , how can this acupuncturist know almost exactly the way I’m feeling when my doctor doesn’t seem to believe a word I tell him?

    Anyway after only 2 treatments I’ve noticed a vast improvement in my attitude and energy. I actually felt a change after the 1st visit.

    I’ll have to wait and see how it goes in the weeks ahead. But you know I would recommend any of you give acupuncture a try. Strange to say it but it seems to be helping me.

  410. I have a chronic sore throat. I have a lot of allergies so it was hard to determin what was what. I’m forgetful, leg cramps tired all the time, no desire to do much at all. I have a bunch of the other symptoms too. I think it may have started just before a hospitalization with broonchitis, sinusitus, lyrangitis, and a bleeding colon.

    or it could have started before I moved a over a year ago. I have been having all kinds of allergy problem since living in Las Vegas NV (near a construction site). My ears have been popping ever since…low energy, all kinds of sinus problems. Mostly no energy and muscle cramps starting with my legs.

    WHAT CAN I DO TO GET OVER THIS IF IT IS A VIRUS????

    REPLY: See the treatments page for useful herbs and vitamin supplements.- Hip

  411. One more thing, it’s getting hard for me to do my job because I keep choking on what feels like dust. I have to have cough drops or gum in my mouth. I’m not suppoes to have anything in my mouth when talking to customers.

    REPLY: You could try the decongestant guaifenesin. Not only might this help your cough and sinuses, but also, a guaifenesin protocol sometimes helps certain people with their general fatigue symptoms; that is to say, guaifenesin cough medicine tablets are a known treatment for chronic fatigue syndrome and fibromyalgia. But in general there are no easy answers. Hope this helps. – Hip

  412. Hi,

    Has anybody tried the Dr Beck Protocol, this is supposed to purify the blood and claims to destroy all pathogens, viruses, bacteria parasites etc. I have been reading peoples testimonials. What so you think?

    As I am in the country Lymes has crossed my mind more than once, had a neg test, ( like all the others ) thought I might give it a go.

    You can make your own devices for very little money there is a website to show you how. But I would blow myself us just changing a plug so probably best to buy it. The company is called sota they are in Canada.

  413. Jackie,

    I tried oxygenated water in Oxy elements Max, did nothing. I would try a hyperbaric chamber first, dont use colloidal silver there is risk involved.

  414. ‘Autoimmune’ is a name frequently given to diseases characterized by the presence of Th1 inflammation. Patients are still often told there is no known cure, while they are given palliative medications intended to reduce pain, without changing the outcome of the disease. Scientists have now identified a common intra-phagocytic bacterial pathogenesis (cause) for much chronic disease, including those thought to be ‘autoimmune’, and other idiopathic (unknown-cause) conditions including Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, (CFS/ME), Fibromyalgia, Sarcoidosis and Post-Treatment Lyme Disease Syndrome (PTLDS).

  415. The website http://autoimmunityresearch.org/ is owned by Dr. Trevor Marshall, creator of the Marshall Protocol, and is simply a window-dressing for his other money-making websites. No offense to Dr. Marshall, but my MD warned me AGAINST his treatment because you are effectively overdosing on antibiotics (also his websites are about making money, not research).

    That being said, Dr. Marshall isn’t even a medical doctor, his doctorate is in electrical engineering (that kind of misrepresentation really irks me).

    On his *patent* for this Marshall Protocol, he claims to cure well over 30 diseases, everything from diabetes (types 1&2), MS, Lyme, AHDH, and more! However, no one is as excited about this “cure” as he is (any newspaper headlines, yet?) and other researchers have labeled his work as having “serious deficiencies.” This guy is no Dr. Chia. I have my doubts.

  416. Watch his presentation!!!

    All I’m saying is that what we are suffering from has

    a bacterial element (like from spiroketes Lymes Disease) that is adding to the inflammation along with virusses in the body. U can target the Virusses (DR CHIA) or Bacteria (Marshall) to reduce inflammation.

    Doctors don’t believe in LD, yet how do they explain so many people getting sick? Look at the symptoms of LD.

    Keep an open mind, an electrical engineering degree gives him a different angle to the problem( u need a damn good understanding in physics, chemistry and maths which u need to solve our problem).

    If u get really ill then it could be an option.

  417. The Marshall Protocol would be top of my list if I thought I was afflicted by an L-form intracellular bacteria, such as the Lyme bacteria Borrelia garinii or Borrelia burgdorferi. Here is some info on using the Marshall Protocol to treat Lyme.

    L-form bacteria are those that have ditched their cellular wall. Borrelia, for example, can freely transform between its normal spirochete form, and its cell-wall deficient form. In their L-form state, these bacteria can live inside human cells.

    The MP is designed to get human cells to secrete internally within themselves more of their own natural anti-microbial substances of Beta-Defensin and Cathelicidin. This class of substances are known as antimicrobial peptides or host defence peptides. They are secreted inside human cells in order to kill any microbes living within the cell.

    The problem is that Beta-Defensin and Cathelicidin are good anti-bacterials, but are not so good at killing viruses. This is why the MP works well for killing intracellular L-form bacteria living inside human cells, but is probably much less effective at killing viruses within cells. The one really good anti-viral peptide naturally secreted within cells, Theta-Defensin, is unfortunately not secreted by human cells (but other primates do secrete it).

    It may be worth giving the MP a go for CFS, but if most of your symptoms are due to viral causes, you may not experience much relief. Nevertheless, the MP may offer some effect, even for viral CFS, since theoretically it does have a mild antiviral action. And if you did happen to have an L-form bacteria co-infection with your CFS, the MP could be of benefit.

    Trevor Marshall himself believes (or hypothesizes) that chronic fatigue syndrome is soley caused by L-form bacteria, and NOT viruses at all. My guess is that he is wrong in this respect. But I suspect he is just saying this to get people to undertake the MP for CFS, in order to prove or refute his CFS hypothesis experimentally.

    What we need, really, is a MP-type approach for killing the intracellular viruses of chronic fatigue syndrome. One of the problems with coxsackievirus-caused CFS is that the coxsackievirus (like L-form bacteria) can change form, and become an intracellular virus (search for “terminally-deleted virus” on this page for more info on this). This is one of the reasons that persistent coxsackievirus is so hard to eradicate: because it changes form to become an intracellular virus that stays inside cells.

  418. BREAKING NEWS: Chronic Fatigue Syndrome Caused by Hydrogen Sulfide, says Dr. Kenny de Meirleir

    This is very interesting news. The basic idea of this research is that the gas hydrogen sulfide (H2S) is the main cause of the multi-system disturbances in CFS/ME.

    Excessive hydrogen sulfide in the body results from certain bacteria in the gut (mainly it is the bacterial species streptococcus, enterococcus and prevotella that generate hydrogen sulfide).

    I suggest reading about this.

    References:

    Kenny De Meirleir Announces He has Revealed the True Nature of ME/CFS

    What is Hydrogen Sulfide?

    Kenny de Meirleir Presentation

    The original idea that H2S causes CFS/ME was proposed by Marian Dix Lemle. Many thanks to Marian Dix Lemle’s for her brilliant insight that hydrogen sulfide may cause many of the CFS symptoms.

    Marian Dix Lemle is a remarkable lay researcher inspired by the desire to follow a lead she thinks might explain and generate a cure for her daughter’s ‘chronic fatigue syndrome’ (ME/CFS). She has worked tirelessly for more than two years to interest the world’s top experts in her hypothesis that hydrogen sulfide (H2S) plays a central role in ME/CFS. And her efforts took on new meaning May 28, 2009, the day Belgian researcher Dr. Kenny De Meirleir called a press conference in London to announce a theory .”

    The home test kit developed by PROTEA BIOPHARMA and De Meirleir will soon be avilable by mail from here for 15€.

    The hydroxocobalamin form of vitamin B12 is a known antidote to hydrogen sulfide poisoning, and thus may be part of an effective treatment / cure for CFS. Also, Pepto-Bismol binds to hydrogen sulfide produced by the intestinal bacteria, so it may be worth trying this to see if your CFS symptoms improve.

    Nitrite therapy may also help mop up hydrogen sulfide. And zeolite (clinoptilolite) is a natural absorber of hydrogen sulfide.

    De Meirleir suggests that pro-biotics may help eliminate these bad hydrogen sulfide-producing bacteria from the gut.

    In summary: mop up the hydrogen sulfide (or stop it being produced), and many of your CFS symptoms may go away. This is the theory, anyway. Note: although a gas, hydrogen sulfide is highly soluble in water, so it can travel in the blood.

  419. If I understand this correctly (and I rarely do) …

    according to this, we are dealing with a new “Aberrant Prion Disease” (APD) which is quite contagious and can lead to a whole host of other problems.

    Prof D M treatment of one patient “focuses on short courses of antibiotics to decrease the numbers of bad bacteria, treatment with probiotic supplements to help restore the good bacteria, plus vitamin and mineral supplements.”

    The medical community needs to wipe the egg off of its face and start curing this damn thing now. everywhere.

    *on your mark, get set, …*

    Thanks Hip!

    REPLY: The Aberrant Prion Disease is another side to the story. However the main story is about hydrogen sulfide, and this is very important from the treatment perspective, because this radical theory of Marian Dix Lemle simply posits that hydrogen sulfide is singularly responsible for many of the major system shutdowns that occur chronic fatigue syndrome.

    If you expose mice to hydrogen sulfide, they go into a state of suspended animation, with much of their metabolism shut down to low power. Thus the hypothesis of Marian Dix Lemle is that all the fatigue and lethargy of CFS may be due simply to the effect of hydrogen sulfide, which appears to be some kind of hibernation gas.

    Hydrogen sulfide sensitizes the brain to heightened anxiety (it over-sensitizes and activates the neurons’ NMDA receptors, which mediate anxiety), which may explain the anxiety disorders that often accompany CFS.

    Hydrogen sulfide also disables the immune system’s natural killer cells and cytotoxic T cells (CD8 T cells), which may explain why there is lowered immunity in CFS, and may even be one reason why the virus that kicked off CFS cannot be cleared.

    Mop up the hydrogen sulfide from the bodies of CFS patients, and in theory they may return largely to normal: the theory says that hydrogen sulfide is basically keeping CFS patients in their hibernation-like state.

    I am very impressed with this theory of Marian Dix Lemle, and whilst it may not be the whole story, it could well explain many of the CFS symptoms. Much gratitude goes to Marian Dix Lemle, who did all the original groundwork on this, in her own time, as a private researcher, trying to find an explanation and cure for her daughter’s CFS.

    Note that even without this hibernation action of hydrogen sulfide, this chemical is highly toxic to the nervous system, and H2S poisoning produces symptoms similar to those in chronic fatigue syndrome. – Hip

  420. but alas, even there are critics to this APD theory as well …

    http://blog.blueribboncampaignforme.org/

    and even Dr Trevor Marshall himself was quoted as saying that H2S gas is not a culprit in CFS.

    i gotta wait to see where the dust settles on this one!!!

    REPLY: I don’t think the person writing in that link has grasped any of the significance of Marian Dix Lemle’s hydrogen sulfide theory of CFS. In fact, it does not even mention Marian Dix Lemle, or the strange, suspended animation effects of hydrogen sulfide in mice.

    Anyway, don’t just read the theory, try mopping up the H2S in your body today !!

    The hydroxocobalamin form of vitamin B12 mops up hydrogen sulfide, as does Pepto-Bismol. A quick visit to your pharmacy to buy some Pepto-Bismol, and an online purchase of some sublingual hydroxocobalamin drops, and your CFS symptoms could rapidly disappear. Note: it must be the hydroxocobalamin form of vitamin B12 you use; the other forms of B12 (such as cyanocobalamin and methylcobalamin) do NOT mop up hydrogen sulfide.

    Hydroxocobalamin sublingual liquid or tablets are very hard to find, but are available here: 1, 2, 3.

    - Hip

  421. OOPS actually sam(e) makes it work the other way, produses more H2S gas, testosterone works it the other way!

    REPLY: But either way, this is a different thing. You are referring to the body itself, which naturally makes very minute amounts of H2S. Some researchers think that this endogenous H2S acts as a neurotransmitter, similar to the well-known neurotransmitter gas nitric oxide (NO).

    However, the massive overdose of H2S produced by bacteria in the intestines is what we are looking at. At these overdose levels, H2S acts as a potent neurotoxin, and in addition, this excess H2S completely overloads the normal operation body’s H2S neurotransmitter system. This is the theory. – Hip

  422. Thanks for all the imput and suggestions. Keep it up for we will never give up trying. If anything comes from seeing a doctor i will post. Until then i will try some suggestions here.

  423. This is driving me nuts. And it’s all blamed on anxiety and i’m not buying that at all.

    Started with dry mouth then a lost appetite. Lost 10lbs. then gained it back. Bowel noises. Weird stools. Tongue got white and somewhat swollen. Slow healing sores especially pimples that used to take 2 weeks to heal now take months.This was last July.

    As of today I still have all the symptoms. I noticed the last few nights my legs from my knees down sweat. Strange things are happening to me with no answers

  424. Paul exacly what I copped! Did U have gastro a couple of months before? Did u have a new partner? Any toxin exposures? High Stress on ur body? Try this Vitamin B 12 regimin.

  425. http://www.micronutra.com/journal/chronic-fatigue/vitamin-b12-therapy-for-chronic-fatigue-syndrome

    U have to inject like 5 vials!!!! 1=vial = 1000mcg , there is no way u could get this benefit by taking oral supplements.

    HIP ANY IDEAS ON IDEAL DOSES?

    REPLY: Certainly, it is best to take B12 by injection, if you can find a doctor to do it. But this is not very convenient. Fortunately, you can also take B12 via intranasal spray. Note: if you take by B12 by intranasal spray, the absorption is only 6.1% compared to injection (reference here). This means, using the intranasal approach, you need to take 16 times more B12 to get the same amount of B12 into your system as you would from an injection.

    Now, the recommended B12 injection dose for treating chronic fatigue syndrome is 500 mcg of B12 daily (reference here).

    So for the intranasal route, given that the hydroxocobalamin liquid you buy is usually 1000 mcg per drop, this means you just put 8 drops into your nasal cavity daily, to get the equivalent of a 500 mcg injection of B12. (You can administer the 8 drops into your nasal cavity using a glass dropper, whilst tipping your head back).

    Sublingual (under the tongue) absorption of B12 is I believe about 10 to 20 times less effective than intranasal, so I would not advise using this route of taking the B12.

    Remember: although all forms of B12 are good for treating CFS in general, only the hydroxocobalamin form of B12 is also an antidote to the hydrogen sulfide overload. – Hip

  426. Hi everyone,

    Paul you are not alone as your symptoms are nearly all like mine.

    I have been visiting this site now for a while and the postings/comments have proven very helpful. Especially those from Hip of course, as I have had more insight into what I may have from this site, than any medical professional I’m sorry to say.

    I have within recent days been following the postings from Paul and Unbelievable – especially Paul – as all his experiences were near identical to those that I initially experienced (White Tongue, Heavy Congestion, Flu-Like illness, Peripheral Neuropathy and low Vitamin B12 count) and experience to this day for the last 4-5yrs. I have read the postings from Paul and made a posting similar to his on October 14, 2008 as NeilW which details all my experiences etc.

    As my additional postings made since will read I still suffer with sporadic muscle twitching, all over body skin crawling mainly in the legs and head/face, blood shot eyes, low b12 deficiency / tummy rumblings, mouth ulcers (due to the b12 count) and ever increasing tiredness.

    I’d like to hear further comments/postings from Paul as he is the nearest I’ve encountered to having what I have. All the medical procfession say is that I have “something” or that I am completely mad or suffer from anxiety – which is complete rubbish.

    Thanks for your postings Paul/Unbelievable.

    NeilW

  427. I injected with B12 yesterday and it made a significant difference, THANKS HIP!!!!!!!!!!! Whether its a cure or not only time will tell. This will depend on the underlying cause which is unkown…..

  428. HIP is there a connection with lack of stomach acid and B12? could this be our cause of deficiency or the long term issue?

    “Senior citizens are often suffering from the lack of vitamin B12 in their bodies. They do not necessarily have pernicious anemia and the deficiency is caused mostly by age. Once the body gets older, vitamin B12 is not so well extracted from foods and absorbed by the organism due to the lack of acidity in the stomach. For them, the best solution to get the necessary intake of vitamin B12 is through intramuscular injections. These injections have another great role. Researchers believe that they can act as a cure for neurological disorders like progressive memory loss and lethargy.”

    REPLY: No, not unless you are a senior citizen.

    You are not taking B12 just as a vitamin, really, but more as a protective substance.

    B12 is a powerful nitric oxide scavenger. Nitric oxide (and peroxynitrite) is generated in chronic fatigue syndrome, and does a lot of damage, according to the NO/ONOO Cycle theory of CFS. Therefore, by taking B12, you can scavenge the nitric oxide molecules in your body before they do damage. You have to keep taking B12 regularly, because B12 is used up in the process of scavenging the nitric oxide that is constantly generated.

    The damage by hydrogen sulfide is an additional problem in CFS, according to De Meirleir. However, the hydroxocobalamin type of B12 will scavenge both nitric oxide AND hydrogen sulfide, protecting your body from the damage these two molecules create.

    So you are not taking B12 just for its vitamin actions, but are using B12 like a therapeutic drug, to protect the body from nitric oxide / hydrogen sulfide damage.

    There is often vitamin B12 deficiency in CFS patients, however, so you may also be getting benefit form B12 by rectifying this vitamin deficiency. Probably the reason for this B12 deficiency in CFS patients is that most of their B12 reservoirs have already been used up in scavenging nitric oxide; hence the need to replenish. I hope this is all clear.

    Update: It is true that some people with CFS do have low stomach acid, and their digestion and general symptoms can benefit from hydrochloric acid supplements (in the form of betaine hydrochloride).

    – Hip

  429. Another alternative to injections of B12: mix one drop of B12 (1000 mcg) into a teaspoon of DMSO (Dimethyl Sulfoxide) liquid, and simply rub on your skin. This will take most of the B12 into your blood. It is best to mix the DMSO with some water (50%/50%), as DMSO can irritate the skin when you use it pure. DMSO is an unusual liquid in that it is absorbed straight through the skin, and will transport any substance (such as B12) dissolved in it through the skin into the body.

    Be sure to buy medical grade DMSO for this purpose. And make sure you skin is clean and washed beforehand, otherwise any toxins, toiletry products, etc on your skin will also be taken into the body by the DMSO. DMSO has a long history of safe use by athletes, who rub it on to ease muscles cramps. See here for more info.

  430. Just got onto this page, and finally feel sane. Thank you so much. I have almost ALL of the symptons, and felt crazy. I will be taking this to my doc. I’ll post any tests and results.

    REPLY: Yes, please keep us updated on what your doctors says. – Hip

  431. Neil,

    Strange you mentioned that a doctor told you that you had something.

    The second doctor i seen ran some tests, this is what came out positive, Saccharomyces Cerevisiae which was real high plus circulating immune complexes. When I asked him what it meant he wasn’t sure and just told me my body was fighting something. The he told me just to live my life. What the frig.

    It freaks me out every day but i’m trying not to think about the way i feel, sometimes it helps.

    I never had a fever with this crap, um, i get nauseated sometimes but i think that is from anxiety. My doc says it’s anxiety that is cause all my problems but i know it’s the problems that are causing the anxiety, but he won’t believe me at all seems like he’s ready to laugh at me when i tell him what i think.

    I’m just wondering lately if i have a yeast problem, what do you think?

    REPLY: Paul, the bug you have is causing both your cluster of physical symptoms AND the anxiety effects. Anxiety is very frequently caused in the brain by the presence of certain chemicals, which generate an anxiety completely independent of your life circumstances. For example, some people have no stress at all in their lives and everything is fine, yet they experience devastating constant anxiety. This is because the anxiety circuits in their brains are permanently switched on, and there is very little they can do to switch them off.

    An infection can often accidentally switch on these anxiety circuits (typically by chemically activating the NMDA receptors in the brain). The only thing you can do about it is: (1) eliminate the infection from your body (which is not always possible), or (2) take some anti-anxiety drugs (like SSRIs) or herbs or supplements to help switch off the brain’s anxiety circuits.

    There was a similar “what came first, the chicken or the egg” discussion on physical symptoms and anxiety in an earlier comment. The true answer is neither chicken nor egg. A virus or other microbe can directly cause anxiety effects, and directly cause various other physical symptoms. So anxiety does not cause physical symptoms (except perhaps superficial symptoms like a slightly dry mouth, or slightly tense muscles), and physical symptoms do not cause anxiety. Rather, both your physical symptom and anxiety are directly caused by an infection you probably have.

    Suggest you Google search Generalized Anxiety Disorder.

    - Hip

  432. hip,

    I truly believe that my case is a bit different. I am not fatigued because of this bug or whatever it is. I went to my doc cuz something was amiss with me. When I was told by my doc that everything was ok with me as far as he could see i couldn’t believe it. Thats why I went to the ID doctor he was the one that ran tests and found a couple things that i mentioned in my last post. That’s when the anxiety started. It’s the frustration and not knowing that is fueling my stress.

    Today I feel pretty good even though i have symptoms.

    REPLY: In my case, I had my virus for two months with zero anxiety symptoms. Then – bang – the anxiety suddenly hit out of nowhere like tsunami, and from then on, I found it very difficult to socialize, etc. – Hip

  433. Paul Hello,

    Yes the med pro I saw told me that I had something, but had no idea what was causing it. All the tests undertaken showed a low b12 count/deficiency and other immune responses such as the C reactive protein were slightly raised than normal which overall suggested my body was “fighting something” and that was that. Everything was looked into including Diabetes/even MS – because of the peripheral neuropathy but all the likely causes of my symptoms were ruled out.

    YES I’ve had b12 injections and 1 doc said I should have them regular and another more senior doc over ruled and said I don’t need them – but I still have a b12 deficiency.

    YES I was also told that I was delusional and suffering from anxiety – YES I’m anxious but because I want to find out whatever I’ve got – and I know in my just about sane mind that I’ve got something.

    It’s been suggested on this site and other med help sites that a yeast problem maybe the cause. However I’m no med pro and this is something I’d hope a qualified med pro would spot. It’s also been suggested on this site that the virus is an STD – but that doesn’t fit in with my life history, but who is to say it isn’t, as it could be I really don’t know. All I do know is that I visit the site on a reg basis and read all posts/comments and what hip has to say.

    The peripheral neuropathy, low b12, muscle twitching, loose leg ligaments (mainly around the knees and not so much the hips) and itchy bloodshot eyes has never gone away and the fatigue worsens every day and week.

    What I have I don’t know but it’s driving me crazy. So as I said you are not alone.

    Neil

  434. CFS doctors are rip offs as well $1200 for 3 sessions, 2 with a doctor…. over 3 months…. Plus lab tests. Then 385 per 20 mins…. They are preying on us like vultures. How ethically correct is that?

  435. Neil W,

    I had 7- B12 shots now and I feel better more energy, but donno if it is a long term solution….

    REPLY: The “classic treatment” for CFS is the combination of B12 and magnesium injections, and this works for many. But you have to do this weekly and consistently. Transdermal magnesium cream is an alternative to magnesium injections. You may, therefore, want to try to get some Mg too. – Hip

  436. When I first got sick I looked into PH balance as a possible cure. Back then I took baking soda and apple cider vinegar which would raise my urine PH from 6 to 7 but this was only temporary. Diet was 80 percent alkaline food and 20 percent acidic and fell off the wagon after a couple of weeks because at the time my main goal was to lose weight and well, I’m impatient.

    5 years later, I’ve added joint pain to the list and my PH is at an all time low of 4.5. Two weeks ago I began the Moreless Protocol (ask Moreless forum at curezone) of lemons, pickling lime, epsom salts, backstrap molasses and kelp. The drink most likely helps with mineral delivery to the tissues but I also have noticed improvement when just taking a calcium/magnesium capsule along with a potassium supplement at bedtime.

    I still have pain in my legs but I no longer have the nausea, throbbing between my eyes, or gastro upset. Some days I even feel motivated to do more than sit in front of the computer or watch TV.

    The concept of PH balance is keeping one’s PH close to the ideal blood level of 7.4. Viruses and bacteria supposedly cannot thrive in an alkaline environment.

    Obviously, I don’t know if this will effect a total cure but the alleviation of some symptoms, greater functionality, and better mood certainly seem promising.

    REPLY: Many thanks for that, Diane. One reason why alkalinizing your body may reduce viral activity is that certain viruses like Epstein-Barr can infect some types of human cell more easily under acidic conditions, and less easily under alkaline conditions. This is known as pH-dependent fusion.

    So any alkalinizing diet (such as the Moreless Protocol your are using, or the well known raw food diet treatment for CFS) may help people that have chronic fatigue syndrome caused by Epstein-Barr virus. Coxsackievirus infection, however, is not pH-dependent, so an alkalinizing diet will probably not help combat coxsackievirus CFS by this mechanism. – Hip

  437. Hip,

    You mention that Coxsackie B virus might be the cause of your condition. How did you come to that conclusion? Was there a positive test that you received for Coxsackie B virus?

    REPLY: This is a complex issue, Paul, but the evidence stacks up. I’ll give you a brief overview. First of all, the standard CFT blood tests for enteroviruses (which the coxsackievirus B falls under) are of no use for testing long-term coxsackievirus. So there is no easy and cheap way to get tested for chronic coxsackievirus.

    But we can try to identify the virus by its signs and symptoms. Fortunately, there are some characteristic features that help make an identification.

    For example, the virus I caught has an unusually fast incubation period of under 24 hours. Now there are very few viruses that can work this fast, so this bit of information is really very valuable for identification purposes. The only common viruses that have such a rapid incubation period are are: influenza viruses, norovirus (aka: Norwalk virus), and the enteroviruses (which include the coxsackie A viruses, Coxsackie B viruses, and the echoviruses). So we narrow down.

    We also know that my virus is a chronic, long-term virus. So this rules out influenza virus and norovirus, and Coxsackie A virus, which are generally cleared from the body in a matter of weeks. So we are left with the enteroviruses: Coxsackie B, and echoviruses. But this is just the beginning of the detective work; a fuller discussion is here. We have to look at all the symptoms the virus is producing, and see which viruses match these, and which viruses do not. I hope this explanation helps.

    Anyone with chronic fatigue syndrome or similar symptoms to might want to get tested for say Epstein-Barr virus, human herpes 6 virus, parvovirus B19, cytomegalovirus. This can be done by simple blood test with any private doctor. If you don’t have antibodies to these, or you do have, but these antibody levels indicate an old, inactive infection, then most likely these viruses are not the ones that are causing your symptoms. But just to repeat: the enterovirus CFT blood test is not worth taking for long term infections. The only time the enterovirus CFT test might prove of value is within the first few weeks or so of the initial infection, where it might stand a chance of detecting an enterovirus infection, if that is what you have.

    Hip

  438. I would be curious to know how many of you may live in an environment that has or could have exposed you to mold?

  439. I have been suffering for about a year now with a chronically inflamed throat with a gamut of symptoms ranging from itching to burning to nagging pain.I also have a somewhat painful lesion on my tongue which the doctor pronounced to be a “papilloma” (what a christian name that would make for a child!). I first noticed it while having brandy, it was as if a barb had suddenly become embedded in my tongue. Powerful antiobiotics and antihistamines failed to make any impression on either the throat or the tongue, at which stage my doctor stated that we might have to consider “something nasty”. My GP sent me to a series of specialists; the first diagnosed “burning mouth syndrome” and the rest built on this. None of the (mainly alternative) treatments they prescribed have had any effect. No swabs or blood tests were taken. Drink, especially wine and spirits seemed to aggravate it so I have given these up. I then felt that tea and coffee were not helping it so I gave these up. My only relief is sucking mints or “Lockets”. I don’t have any other noticeable symptoms and my health is otherwise fine. I feat however that it may be a warning of incipient cancer. (My mother died of esophageal cancer after ten years of doctors telling her there was nothing wrong with her). Any comments or advice?

    REPLY: Keep searching the Internet, and you might find soemthing. You do not appear to have other symptoms in the rest of your body, so what you have is very different to the systemic virus described in this blog. – Hip

  440. Hi Paul and All,

    I had 2 x b12 injections and have had no more since, as the med pro said this wasn’t needed. And decided my diet was bad, even though I have pained myself on a good diet in order to prove that there is something wrong with me. As I said the symptoms on this blog I still have and only worsen. However strangely my leg weakness is not constant but rather periodic (Hip has described this as GAD) and the ongoing muscle twitches/crawling and stabbing pains. The receding gums are now to a point of embarrasment and my dentist can find no cause and is surprised based on my previous dental records – the gum disease was rapid. The MDE/skin wrinkling was an initial experience and I no longer have this symptom but did initially – even down to how Hip describes it with the skin looking blotchy red.

    So as Hip states because we are the only ones that know we have something wrong as the Med pros can find nothing wrong based on all the tests we continue to search for possible causes via the internet and this was my major real finding. As all the other likely causes can be struck off the list as they are suffered for a period of 2-3 wks for example and then die a death. However as all the blog descriptions and research will prove is that it can only be narrowed down to a few likley causes and as Hip writes ongoing that in his opinion Coxsackie B is a possible cause.

    I’m now at the point in thinking, if it’s not this, what else could it be as all the med pros I’ve seen and all the tests I’ve had made no diagnosis only an acknowledgement that something was wrong. Even I know that and it’s only my search that has brought me to this site.

    It it wasn’t for this blog and Hips findings I’d have no idea or help at all. What a nightmare.

    NeilW

  441. The more i read the more i freak out.

    Must be some luck that my gums seem to be ok. How fast did the gum problems develop for you Neil?.

    I’m going to see an Infectious Disease doctor next week and I need some help on how to make the most of the 20 minutes i’ll have with him.

    Thanks

  442. An ID doctor wont do anything, tried that, he will look at the CRP and if it’s low then they will say u have post viral fatigue, see ya later. That’s what they did to me anyhow.

  443. I first started to get dental cavities and have no real plaque problems alike other posts I’ve been reading. The cavities moved from tooth to tooth on one side to the next and occured over a 6mth period. Nothing for the first 18mths-24mths and then whhooossshhhhh…it hit me.. The gum receding is bad now and the lines are increasingly more prominent along the gums and then the teeth began to fall out – it’s doing my head in.

    As Unbelievable said the ID doctor will undertake all the tests and then say what he thinks you have, and then say he or she has no idea what you have – unless there is a diagnosis in your case of a known disease. And again as Unbelievable says y our C Reactive protein is slightly raised but not too much and as in my case you’ll be told you have something that should have already passed and you’ll walk out the door and be looking after yourself and trying to find a cure or diagnosis would be nice.

    This is really a questioning time and as I said these posts are the only things that keep me in the loop or on the go. Tell me Paul, are you in the US or UK and do you have muscle twitching, all over body skin crawling and a white tongue with spots on it – I had this and was diagnosed Pernicious Anemia but I had no antibodies and the IF was OK. Interesting isn’t it, that we have all these symptoms that in some cases would suggest MS or CIDP but have no diagnosis.

    NeilW

    REPLY: Have you actually lost teeth due to this virus, Neil? – Hip

  444. I had no idea that all of these syptoms I was having over the years were connected! I decided to try a little experiment by lowering my blood ph to see if the symptoms became more severe. I drank a cider vinegar tonic and felt a little funny after a few hours. Waking up the next day, the symptoms were quite severe. I had never felt my legs as heavy or needled as this morning. Now I need to raise my ph again and try to eat foods that will help. I’m thinking if a low ph made things worse, a high ph would make them better. We’ll see in a few days!