This site is about a nasty virus which causes a chronic ongoing low-level infection in the body, inducing persistent mental symptoms such as anxiety, depression, memory problems, and physical symptoms like a chronic sore throat, constant nasal congestion, chronic flatulence, crêpe paper-like skin wrinkles. Sometimes this virus triggers sudden heart attacks and myocarditis. Blood tests indicate this virus is most likely Coxsackie B4 virus. Symptoms suggest it may be the same as the
yinzibing virus from China
.
Chronic Sore Throat / Mood Virus 
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.
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.
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
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.
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.
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.
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.
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.
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.
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
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
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..
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.
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.
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.”
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.
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!
Frustrated is 100% right. I am struggling with the same problem and I am SURE 100% I have contracted it sexually.
Kind Regards,
Edward
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)
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.
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
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.
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.
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.
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
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.
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!
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.
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!
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.
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
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.
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
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.
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?
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.
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
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.
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?
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.
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.
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
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
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.
check out this website, this is for the ppl who have contracted this virus sexually.
http://www.mnwelldir.org/docs/misc/stealth_virus.htm
The next time i vist my GP i am going to ask him to have a look at this website and have him conduct the test that this doctor sugguest.
Love and Peace for all
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.
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
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
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.
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.
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.
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
This sounds like what I’ve got. I am pretty sure it’s a
mycoplasma. Try Doxycycline.
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.)
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
Post your theories about where this agent comes from on Red Pill Theories- a yahoo group.
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.
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
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.
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/
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.
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.
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
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
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
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.
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.
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.
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?
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!
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.
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.
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!
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
Hi Shane,
Have you talked to a doctor, run tests, etc? If so, what have you been told?
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!
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.
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.
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
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!
This question is for NeilW. Were you at anytime in the past prescribed any type of steroid for inflammation?Prednisone ect.
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
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.
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
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.
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?
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!!!!!!!
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.
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.
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.
I respect your opinion and thank you for your reply.
type stealth virus into google or another web search.
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.
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.
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.
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.
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.
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
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?
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!
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.
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
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?
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
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.
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.
have any of u’s tried getting ur blood plasma cleaned?
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.
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.
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
Does any one in the Twin Cities MN area have this permanent sore throat? I would like to talk.
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.
To Williiam: how long have you had it?
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.
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.
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
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.
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.
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.
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.
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.
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?
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?
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.
Also, has anyone else developed diabetes?
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
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?
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….
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?
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.
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…. ?
To Rain: Possibly EBV? steroids did help my RA symptoms but I no longer take them. What kind of suppliments do you take?
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.
What a bummer.
I fear watching this thing progress in others.
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.
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.
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
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?
i have all these syptoms and facing great trouble because of this . Please help me…
Have you donated blood and have it rejected due to a false positive? I have similar symptoms…
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??
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.
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.
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?
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”).
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?
Hip, when was the last time that you were tested for every single virus available (including HIV)? Do you undergo tests regularly?
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.
R,
this also can have a bacterial etiology.
Moreover all data now sugest that this should be rather bacterial infection than virus.
Regards,
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.
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.