4,718 thoughts on “Comments Page

  1. What are all of your diets? Do you eat processed foods and lots of sugar? What are your sleeping patterns? Do you have a regular time in the morning that you wake up and a regular time in the evening that you go to sleep at? Do you get any exercise during the day, or do you just lay around?

    Could the pain in the abdominal area (with rumbling) possibly be gas? It sounds like it might be from the info here.

    Do any of the inflicted drink or do drugs? If so, how often?

    Thank you, this could help the effort to diagnose.

    REPLY: I myself am following every possible health option, from a good and fresh diet, exercise, meditation, avoidance of alcohol and even drugs like coffee, which I find provokes the anxiety even more.

    – Hip

    dfsfd

  2. @ Doctor

    I’d like to say its encouraging to see someone visiting us who is a member of the medical community. Might I ask what your area of expertise is?

    To answer your questions:

    My illness began in September 2007. About halfway between then and now I gave up all food bad for me and started eating an all natural/organic diet. In the pursuit of defining my illness, I gave up gluten products, refined sugars, refined flours, caffeine from any source, started drinking freshly juiced vegetables daily, gave up dairy, and drink only purified water, lately only Penta brand. I still follow this diet today and mainly eat turkey, chicken, squash soup, chicken soup, mashed potatoes (recently the mashed potatoes don’t seem to be agreeing with me), eggs, sweet potatoes, okra, lemon rice, and try to eat a vegetable of some kind once a day (i hate vegetables so this is a challenge). I need more fruit in my diet which I am trying to work on. I have not eaten red meat in almost 5 years( I quit unrelated to this), have never smoked cigarettes, and have not drank alcohol in almost 6 years except for a few rare occasions. I used to smoke pot regularly, but quit at about the same time that I started my organic diet.

    I wake up at 8am 5 days a week and go to be between 11pm and midnight. I always give myself 8 hours of sleep. However this is complicated by the fact that for some reason when laying horizontal, I experience an increase of a feeling that is hard to describe. It is a sick all over feeling that borders on nausea and general body malaise. This makes it hard to get a full night of solid sleep, and in fact the only way I can rest in this condition is to prop myself up to more of a sitting position. I speculate that the proposed brain inflammation this virus is purported to cause might have something to do with the increased feelings of malaise when laying down, because of the increased pressure in the head. I do feel much better if I get a good nights sleep, but when I have the incidents of what I just described, the following day I usually feel pretty terrible. Today is one of those days. The frequency of these bad nights seems to have been increasing for me the last two months.

    As for exercise, I spent the winter snowboarding one day of each week, however this was during a period where I thought I was getting better. That is one of the hallmarks of this illness in my opinion. The rollercoaster ride where you feel ok, then you feel terrible, but always it worsens a little each time. I hadn’t had a period that long since I had gotten sick where I felt that good for that long. If you read above, you’ll see my recent dip seems to have been triggered by an office flu that went around about two months ago. I haven’t been well since, with most of my symptoms feeling more exaggerated than ever. Now my exercise consists of daily stretching, light dumbbell and jump rope.

    The stomach pain and rumbling is definitely NOT gas. From my observations, the pain is coming from the abdominal muscles not the intestines. If I pinch and roll my stomach skin, I can feel the sore spots. These get worse at times but sometimes get better to the point that there is no pain. When experiencing a painful spot on my abdomen, I can press on it and hear and feel fluid gurgling. This feeling of fluid seems to be between the skin and abdominal muscles, rather than below the abdominal wall. This same kind of soft tissue pain is present in other parts of the body as well, and in some cases pressing those areas results in the same kind of squishy fluid sounds/feelings. An example of this is below my right shoulder blade at times, although I have experienced this in other body parts as well, always in a muscle.

    Please keep in mind while considering this that most of us here have had a battery of tests, some of them multiple times, and have ruled out most of the common suggestions one might consider.

    Thanks for posting, I am, and am sure the rest of us, are eager to hear your opinion!

  3. @ Unk

    It is mentioned on the main page below the navigation that this virus could be the same as the one in China.

    Also, and this is just my opinion, we need to refrain from the conspiracy topics on this forum. We need top be taken seriously and more important than where it came from is defining what it is and how we can treat it.

  4. Get as much exercise as you can tolerate. As for ALL the symptoms listed here: Been there, done that. Much better now.

    Much much more dis-information will follow. . .

  5. @ RunningDick

    So you had the wrinkly skin? Really? And its gone now? Why not share how you did it? Because you just here to be a Dick.

    Hip, you should delete runningDick’s answer. That kind of bullshit is not helping us.

    REPLY: Judging by his Internet IP number (geolocated to Los Angeles) “RunningStick” is the same person as “Keith Loritz”.

    If you post any more nonsense RunningStick, I am going to have to ban you.

    – Hip

  6. After a little research, our good friend Kieth Loritz lives in Anaheim, CA. He likes to enter marathons. Keep talking shit buddy. I’ll come pay you a visit. Don’t mess with hackers :)

  7. @ Hip. You can kill my last comment if you want. I just can’t help myself sometimes lol. Idiots like that just make me angry!

  8. For people that come here to say that this is nothing.. if you really don’t believe us, will you meet me in person and shake my hand? I dare you.

  9. I was watching the Giants play the Dodgers tonight and it looked like a bunch of the Giants kept wiping their noses. Madson Bumgarner & Sergio Romo getting the rhinitis. Freddy Sanchez had the flu a few days ago. Don’t know if they have it or not but I know rhinitis is very characteristic of this. I haven’t been close enough to tell if they have it or not. It seemed to me that 1 in 5 people around where I am have it. E, how many people around where you are do you think have it?

  10. So is it really necessary to use these pen names if you already know exactly who I am? lol I’m in the central valley. I cannot sleep or function at the moment but I am willing to share a voice over ip service with all of you. This will help deter the paranoia we all seem to share…

    I read the Giants won. I haven’t watched baseball in years, how was the game?

  11. Just a reminder to everyone: PICTURES OF SYMPTOMS

    If you are able to, please take some digital pictures of: the skin wrinkles, the red skin areas on the upper chest next to the neck, or pictures of any other characteristic symptoms. We need to have clear, well-focused, close-up pictures of these symptoms (these will not identify you personally).

    Most of you have my email, so you can send the pictures to me, and I will pass them on to E, who is going to make a youTube video to attract more attention to this virus.

    Many thanks.

  12. RELAPSE 4 me new symptoms strange new rash (resembling foot hand and mouth virus) ankles and feet still swollen ankles, more Alice in wonderland feeling. Anxiety back, insomnia tired all day. When will this end.

  13. @ Yuri

    I don’t know who you are buddy. :D In the case of that guy Keith I just did some easy snooping online. Its pretty amazing what you can find out about a person with just their name and general location.

    For instance, here’s some more fun about Mr. Loritz:

    His real name is Yukkito. He goes by Keith. He lives or lived in Anaheim Hills, Ca. He is Japanese. He has a sister and at least two children. I won’t name them here of course for their privacy. He likes to play scrabble, and meets at a Denny’s in a city right by Anaheim Hills – I won’t mention at the moment, but have the exact address – to do so with a club he belongs to. His phone number is 714- 713-****. (wont post the whole thing but putting it here for RunningDick’s dumb ass to see). I have his email too. If he keeps posting BS I’ll post both the email and the phone number. He enters marathons all over the place. I could be wrong, but given his second nickname, RunningStick, its likely him.

    Ya know Keith you’re more careless about your information online than maybe anyone I’ve ever met. Wow.

  14. @ floridafam

    I am having a really bad resurgence too. I have the rash on my upper lip and it burns around the corners of my mouth. Been having the dizzy kind of feeling when I move my eyes. Some muscle twitching but not relentless. Your description as an Alice in Wonderland feeling is pretty good. It sorta feels like my head is top heavy. I am also having the weird tissue pains right above and slightly inward of each hip, and interestingly enough, so is a few other people here at work. What’s interesting is that symptom did not start for me until almost two years into this, but the people i just referred to at my work don’t have any other symptoms but that. This is so weird. Looking at pictures of HFMD, my rash does not look like that. I’ll post some pics tonight of it so you all can see.

    ***HFMD is caused by viruses that belong to the enterovirus genus (group). This group of viruses includes polioviruses, coxsackieviruses, echoviruses, and enteroviruses.***

    There’s our suspected culprit in that list, coxsackievirus. Very interesting.

    I am having a hard time not thinking this is another wave of illness, as if I have been reinfected. Damn it I was doing so good two months ago!

  15. @ Hip

    Did you ever try that ProBoost stuff ScienceMan was talking about?

    REPLY: I took 1 packet of ProBoost daily for a month, but did not see any significant improvement in symptoms. However, Scienceman used 3 packets daily for a month when he got the improvements, which is the dosage level that I am going to try next.

    – Hip

  16. I believe my problems are Xmrv I believe that it attacks your immune system and allows reactivation of old viruses (in my case EBV) I think it is like HIV as in if you have hiv it does not cause aids until another opportunistic virus or other pathogens cause you to decline to AIDS. That would explain why all my symptoms are not totally the same (different pathogens different symptoms) I never had stomach issues at first or the sore throat mine was oral thrush and extreme fatigue well that and the runs for about a month, horrible I know. Along with a very productive cough, new moles and freckles, red spots all over (cherry angyomas) the skin wrinkling, sores in mouth and on top of head (like little blood blisters in mouth and little pimples that pop but never drain all the way on head) there have been more and more in the last 5 years, also I seem to go through periods of remission unlike hip. But never back to old self.

  17. @ floridafam

    I have the head sores too. Kind of like pimples but harder to pop and the stuff in them is more like yellow pus rather than the white stuff in pimples. And like you said, they seem to not pop all the way, and mine always come back in the same spots. I too go through periods of remission. The longest was about six months, this last winter. I am trying to see if I can return to that by doing what I did in the time before that. Interestingly, I am realizing that that remission was preceded by a month long course of antibiotics, specifically levaquin. My PCP insisted I had a sinus infection (due to the nsal drip and sore throat), and said I should try it. I am seeing him on Thursday and will probably try it again to see what happens.

    It sure is interesting that we seem to be having a similar flare up at the same time.

  18. @ Hip

    Given that this is at the bottom of his last post..

    “More dis-information to follow”

    Could you check the IP of GulfWarSyndrome? It may be Mr. Loritz.

    REPLY: Yes it is the same person.

    – Hip

  19. XMRV is an interesting suspicion.

    But it looks like researchers are divided as to whether it is indeed a problem or simply a marker for another (as of yet) unidentified problem (or infection).

  20. im going to a research hp hopefully they find whats up..

    REPLY: Good luck at the hospital. Let us know what they discover.

    – Hip

  21. The problem with this mystery illness is that it TRASHES a lot of the good bacteria in your GI tract giving the APPEARANCE of a problem with yeast.

    A quick test is to spit some saliva into a glass of water. Wait for several minutes and then if you see “strings” formed from the top reaching down, you have a problem with the bacteria in your system.

    This, however, is not proof of a yeast infection, only that something is messing with the good bacteria in your body.

  22. Found the answer:

    Might I have a problem with Candida Yeast?

    You can try this simple test to find out.

    First thing in the morning, before you put ANYTHING in your mouth, fill a clear glass with room temperature Bottled Water.

    Work up a bit of saliva, then spit it into the glass of water. Check the water every 15 minutes or so for up to one hour.

    If you have a potential problem, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or “cloudy” saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water.

    If there are no strings and the saliva is still floating after at least one hour, you probably have Candida under control, and have nothing to worry about.

  23. Wow .. I just tried it and within minutes there are inch long strings. It seems from most of the directions online that its best to do it after a night of sleep, first thing in the morning so I’ll try it tomorrow morning too.

    Doubt its the cause of all this, but it certainly could be the source of all these really intense recent symptoms. Very interesting.

    Even if it isn’t the base cause anything to help clean my system out is awesome and can surely only help.

    Thx Asklepius!

  24. The spit test is a bunch of BS. You have to get a culture to see if you have candida, the problem is EVERYONE has candida it is a part of your natural flora. There is a place that has a PCR candida test I will see if I can find it again. What your really need to rule out candida is a ” transformation to antigens blood test ” It will tell if your white cells are functioning against candida (mine are not)

  25. Just passing through again and I can’t believe that this thread is continuing with all of these symptoms. I would say that many of you are suffering from undiagnosed diabetes, (Type II), and Candida which is often an accompanying complication due in part to the high blood sugar levels of the former. The two would account for most of the symptoms, including the pin pricks, the skin wrinkling (my father suffered from that with adult onset Type II Diabetes – some diabetics experience it and some don’t), and the fatigue and resulting lack of sufficient exercise, edema, feelings of depression, etc.

    First I would recommend many of you who have not read my initial Post regarding the subject, see my reply to Hip dated February 9, 2010 at 12:25 pm. Study it and see the Links with the recommended supplements. You might also take a look at my subsequent two Posts to Kevin in March.

    Next, be aware that as far back as 1983 a breakthrough book was published about Candida, entitled, “THE YEAST CONNECTION” by William G. Crook, M.D., with a “COMPLETELY UPDATED AND REVISED” version in 1986. You might want to read it. However the book that you should definitely read starts out this way on the cover of the paperback edition – read this very closely:

    IF YOU SUFFER FROM – ACNE – ALLERGIES – ANXIETY – ASTHMA – CONSTIPATION – DEPRESSION – DIARRHEA – EARACHES – FATIGUE – HEADACHES – INFERTILITY – LOST SEX DRIVE – POOR MEMORY – MUSCLE WEAKNESS – PERSISTENT COUGHS – PREMENSTRUAL SYNDROME – RECURRENT VAGINITIS – SKIN IRRITATIONS –

    YOU MAY BE A VICTIM OF..

    THE YEAST SYNDROME

    And believe me, that’s just a small sample of the numerous symptoms that are detailed in the book – including edema and just about every other symptom I’ve seen on these recent Posts, and many more which you haven’t complained about!

    “THE YEAST SYNDROME”, first published in 1986, is the title of the book written by John Parks Trowbridge, M.D. and Morton Walker, D.P.M., and is one of the most user friendly books ever written about any topic! It provides a thorough explanation of exactly what Candida Albicans is, yeast overgrowth, complicating factors, etc. with chapters on how to recognize it, diagnose it, lab tests, etc., and best of all a step by step method of how to treat and completely eliminate it with lists of foods to avoid, foods you can and should eat, and how to phase back in to your diet many of those foods originally eliminated in the first phase, supplements to take, recipes, etc.

    In the 1986 edition (Bantam Books – paperback) there is also a list of doctors, most of whom are M.D.’s, by State (in the U.S.), which is entitled, “Directory of Physicians Who Offer Treatment for the Yeast Syndrome”. It also has an Appendix of “Organizations and Support Groups Providing Further Information on the Yeast Syndrome” as well as an Appendix entitled, “Selective Bibliography for Health Professionals” with lists of medical books, and clinical and laboratory journal articles by subject – for those who might be interested.

    So first, study my initial Post and then find and purchase and READ “THE YEAST SYNDROME” by John Parks Trowbridge, M.D. and Morton Walker, D.P.M.!!! Follow the recomendations to the letter – they really work! How do I know? Been there (near death from severe ulcerative colitis in 1987 with Candidiasis as a resulting complication) and done that (fully recovered) !!! Good luck.

  26. Thanks for the plug on “THE YEAST CONNECTION” I know the book but it has one major flaw (It is BS) You have to have a underlying immune condition for candida to cause these problems. Healthy adults do not suffer candida PERIOD.

  27. It sound like you read only the first half of my Post. Although I cited “THE YEAST CONNECTION”, the book that I recommended be purchased is “THE YEAST SYNDROME”! However, regardless of that, on the first page of “THE COMPLETELY UPDATED AND REVISED YEAST CONNECTION” it is endorsed and highly recommended by:

    Alan Scott Levin, M.D., Adjunct Associate Professor of Immunology and Dermatology, University of California, San Francisco School of Medicine

    Walter A. Ward, M.D., Past President, American Academy of Otolaryngic Allergy, Winston-Salem, North Carolina

    and

    Geprge E. Shambaugh, Jr., M.D., Professor Emeritus of Otolaryngology, Northwestern University.

    So tell us, floridam, exactly what do you have for credentials?!

    Now read the rest of my Post!

  28. @ Beach Man

    quote

    “So tell us, floridam, exactly what do you have for credentials?! ”

    No need to be hostile here. What you are offering is an opinion, like everyone else here, and you have not proven any more credentials than anyone else on this forum.

    After some research it seems that the spit test is considered unreliable. However, as my symptoms, at least the ones related to my recent flare up, seem they could be candida related, I am going to ask my doctor for some tests tomorrow when I see him. I’ll let you all know what I find.

  29. Not being hostile just my opinion after years of research. Candida will not proliferate unless you are immune compromised thats the story like it or not. My credentials? you are joking right. If I was a Dr I would not be here posting if thats what you are asking but I am a EMT if thats what you want to know. and I have studied the shit out of infectious diseases for the last 5 years now and would say I know more then the average layman. sorry if you take offense to me stating a fact but that is a fact the whole yeast connection has been dissproven sorry but it is a virus not candida that is the cause

  30. Well, I did recover from ALL the symptoms you have listed here. Zinc and/or Selenium in the form of anti-dandruff shampoo for the skin. Sensitive Sarna with 1% Pramoxine Hydrochloride for the rashes and itchy spots. If that does not work try any of the hydrocortisone creams. Then as a last resort use the prescription steriods from your doctor.

    You guys are a lot smarter than I thought. However, most (but not all) of your info you found was inaccurate. Look how much info there is on everyone out there now-a-days. So you guys are a bunch of hackers?

    I have tons of info about this ‘virus’ that might be of interest. You will not believe me when I tell you about all the spectulation out there. There is a lot more going on then just your virus. But since I know almost nothing about you guys I will leave the ball in your court. You have my e-mail address and might have my cell phone number, maybe we should get together. (Thanks for not putting that info online).

    The dis-information is not from me. It is from you guys. Think about it, you are only looking at difuse symptoms that differ from person to person. From the looks of it, you guys still have a whole list of terrible symptoms to go thru before you get better. Should I spoil it? Anyone pissing blood yet?

    The doctors already know all about this one. They most likely all had it in med school. The first symptom a doctor looks for is a sore throat. It has been around for at least 10 years.

    If you think the CDC is going to help you may I suggest you look into Morgellon’s.

  31. In fact you your self said you had ulcerative colitis in 1987 that is your underlying condition. You would not have had a problem with candida if not for this condition I guarantee it.

    Now that being said I did read your post and thank you for the intent, but I have other issues the candida is a opportunistic secondary infection I have to deal with, but thanks again for your input.

  32. @ Keith

    I don’t know about everyone else here, but I have uber computer skills. I am not a hacker really. That kind of knowledge is reserved for bigger geeks than myself. I just know how to poke around in the interwebz. :)

    You latest post is much more reasonable in my opinion and I welcome any discussion that will help us to solve our troubles.

    And I don’t think the CDC will help us as a matter of fact. I’ve called them several times, as well as the state health dept, and about 30 different contacts at national and local news stations.

    As for disinformation, try and look at it from out perspective. Do you not think we’ve tried everything we can? I am more than 10k in debt from tests and “solutions” provided to me by doctors over the three years I’ve been sick, and all the while I get more sick by the day. I have tried conventional medicine, alternative medicine, and just about anything anyone has suggested and I continue to decline. We are not spreading dis-information, we are trying to find the common factor among a group of people who have the same experience.

    Its great you are better, but we are not, and believe me, at this point things like hydrocortisone creams are hardly a solution. I continue to make the analogy: If you treat an HIV patient’s symptoms and not the HIV, that patient will DIE. Right now we are being forced to treat the symptoms not the cause.

  33. Hi Keith Loritz

    Are you telling me that you used anti-dandruff shampoo to treat this virus? Did you apply this to the head and/or your body skin, or did you take this shampoo internally (it is of course quite toxic to take internally)?

    I know a lot of people reading this will think Keith Loritz is mad, but one of the active ingredients of anti-dandruff shampoo, Zinc Pyrithione, is a powerful killer of picornaviruses (picornavirus is the viral family into which the genus enterovirus is classified; and I believe our virus is an enterovirus).

    A few years ago, when I investigated which substances best fight picornavirus / enterovirus, Zinc Pyrithione came out as a very good one, but it is unfortunately quite toxic for internal use in large quantities.

    However, while internal use of Zinc Pyrithione is definitely not a good idea, using anti-dandruff shampoo on our affected skin areas may kill this picornavirus in the skin at least. And some minute amounts of Zinc Pyrithione from this skin application may seep into the body, where it may have some helpful antiviral action in the body as a whole, but not be toxic in these very minute doses.

    But don’t take Zinc Pyrithione internally: “rats allowed to consume Zinc Pyrithione for a fortnight suffered a range of health problems including deformed spines and muscle wastage”. High amounts of Zinc Pyrithione may also cause DNA damage.

    By the way, you may be better off using Pyrithione cream, lotion or soap on your skin – these are all available. Though many have a lower percentage of Pyrithione (around 0.25%) than Head and Shoulders shampoo (which is 1% Pyrithione).

    REF: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612303/

  34. Hi E

    You said you found Keith Loritz’s email address. Could you kindly copy and forward my above comment to him. We don’t want our friend crazy Keith to poison himself in the long term, if he is doing something as bizarre as ingesting anti-dandruff shampoo.

  35. By thew way, Keith Loritz:

    You seem to be acting in a cagey way.

    Most people that have a health condition, and who have discovered something that can help it will naturally want to share it. Often you get unexpected returns from this dialog, in that you often find other people reply with useful bits of additional knowledge that may refine what you know.

  36. @ Hip

    I couldn’t agree more. I am doubtful of his motives. His first remark made no sense, and his propensity to post under pseudonyms belies any good intention he my propose to have.

    REPLY: It is worth remembering, though, that this virus can alter your mental state quite considerably, so this strange behavior may be caused by this virus. I am sure that most people here are aware that they have not been themselves mentally since they caught this virus.

    In particular, I have noticed that this virus alters your emotional functioning, often making you feel emotionally frail, or wary. Generally, therefore, in these circumstances it is good to give people the benefit of the doubt, and try to accommodate people’s quirks and frailties.

    – Hip

  37. Just a repost, wanna make sure Floridafam see this:

    @ Floridafam

    I was saying that Beach man should not be hostile towards you! Not the other way around :)

  38. Beach Man, let’s talk about this in person. I’m willing to meet. How do you get rid of the livedo like blotchy skin that I have?

  39. Hip,

    Do you use probiotics? If so what kind? I don’t know too much about them so I am wondering if they are a bad thing to take if you have a compromised immune system, or if they would help.

  40. @ Keith

    WTF is this supposed to mean?

    “From the looks of it, you guys still have a whole list of terrible symptoms to go thru before you get better. Should I spoil it? Anyone pissing blood yet?”

    Spoil it? You think this is some find of f’ing adventure we’re on for the fun of it?

    It seems to me you are suggesting that you KNOW what we have, and are proposing that we are going to get sicker and start to piss blood. Well you are one despicable human being if that is the case. If you know something why don’t you offer some specific help rather than all the cryptic messages and contradicting rhetoric?

  41. We decided to further analyze the genomic sequence of the MuLV-like contaminant virus. Surprisingly it was neither identical to MuLV nor to the novel xenotropic MuLV related retrovirus (XMRV) but showed 99% identity to a synthetic retrovirus which was engineered in the 1980s.

  42. @ E don’t waste money on probiotics just get yogurt with active live cultures it will do more for you and much cheaper

  43. Floridafam, I don’t doubt that man-made viruses are created all the time and how some would get out. But XMRV is a retrovirus so it’s not that contagious. The disease I’m dealing with is easily spreadable. It’s possible that this is something that was man-made and I’m sure if it’s so contagious, the bio company that created it would stop at nothing to cover it up. This disease is so common where I am that I’m sure someone will investigate it at some point. Have you been diagnosed with XMRV?

  44. @ hudson

    every hear of Incline Village? they are believed to have xmrv. It was one of the largest clusters of cfs many children from the same school got cfs. It was easily spread through the town

  45. As we all know the CDC is trying like hell to bury XMRV Why do you think that is? If I had to guess it would be a combination of a few things mostly insurance companies imagine a new disease that is going to require expensive antiviral treatment with 10 time the prevalence of HIV. Think they are willing to pay that out? Also I believe the CDC has known about XMRV for many years and now they are about to be found out for there inaction.

  46. Floridafam, I know that you’re concerned about XMRV but have you been diagnosed with it? It could be some other virus. I believe what I have is the same one that Hip and the one spreading in China. If it’s so contagious as you say, then spread it if the CDC does not acknowledge it. All I’m asking for is that the CDC investigates this. If it’s so contagious, go to the state CDC in your area and give it to the people working there.

  47. No I have not tested for XMRV yet. Hip does not know what virus he has for all we know he could have XMRV. I am only focusing on XMRV because it is in the same family of viruses as HIV, It does not replicate of evolve as much as HIV, But that could be why it is not fatal or at least for a long time anyway. It could go on like HIV in that you get HIV and then some other opportunistic infection and POW you have aids but the symptoms you get could be totally different then another guys because you got a different opportunistic infection even though you both have aids. So if there is another HIV type virus with ten fold the prevalence then it could very well be XMRV in all of us. They do not even know how it is transmitted yet. for all we know it could be as easy as catching the flue

  48. hudson I find this statement a bit disturbing buddy “go to the state CDC in your area and give it to the people working there.” I am in no way trying to give this to ANYONE ELSE and I hope to God that no one else here would either!

  49. @ Hudson

    Yeah, with all due respect Hudson, I was gonna say the same thing as Floridafam. I have no interest in spreading this. The last thing I want to do is give this horror to someone else. I’ve stopped dating, and avoid visiting my closest friends now for fear of passing it to them.

  50. I just got back from my doc. He gave me three months of Doxycycline! Like I said in earlier posts, throughout this ordeal I have always felt better while taking it, but I never got to take it more than tow weeks. I am eager to see the results of this! I was able to tell him about this site, and our theories and he seemed interested and said he’ll come check us out here. Hopefully if he thinks this appears as real as we do, he can let others in the medical community know. Could be a start gang!

  51. Floridafam,

    I don’t know if you’ve read my previous posts but this illness is so contagious where I am that you can get it by being in the same room as someone else. This isn’t a disease of choice like HIV, where people can abstain from sex or use protection or other risky behaviors to avoid giving it to others. There’s no point in staying home because one has to work or buy food just to live. Anyone can easily get it. You can pass it to some grocery clerk just by standing in line by them. People where I live whom I don’t know have it. I didn’t give it to them. I don’t engage in risky activities just go about my daily business of working, buying food, and going home. THIS DISEASE IS GOING TO SPREAD WITH OR WITHOUT YOU because it’s highly contagious. Just by shaking people’s hands you can spread it. Floridafam, are you going to where a spacesuit? The faster the CDC understands this the better because it’s going to effect everyone sooner or later. I’d rather have it dealt with earlier. Again, People are selfish by nature. Many people think, it’s not my problem, I don’t need to deal with it. If people at the top of the decision chain realize the severity of this (ie, they have it too), they will pay attention. Otherwise they will continue to sweep it under the rug.

  52. E & Floridafam, I don’t know what the illness is like for you in your area or how spreadable it is but it’s so prevalent here that 1 in 4 or 5 people have it. Soon it will be more. I went to pay a medical bill in person in a local medical office. I wondered about spreading it by just being in the room. Sure enough someone coughed through the walls. It’s already there in that office before I got there. Hip told me that he imagines that it will engulf the majority of population by 2020. Again, I don’t know what illnesses you have but this one is so contagious that CDC has to investigate.

  53. E & Floridafam

    Whatever I have I don’t think it’s XMRV because it’s so contagious that you can get it from a handshake or being in the same room with someone who has it. I agree with Hip in that it’s something like a entirovirus because those are airborne. Look at the mono virus, it’s spread by saliva and they say 90% of the population has been exposed to it. An airborne virus is even more contagious that even more people would get it because our immune systems can’t clear it. Hope this makes sense. I hope you understand my opinion of this.

  54. @ Hudson

    There is some logic in what you say about people getting it no matter if you have interacted with them or not ( i have been seeing the same pattern where I am as well ), but as for the level of transmissibility you suggest, well that is not substantiated. Not yet. I am certain I got this from kissing a woman who had it. I know who and when and she had all the early symptoms. I went snowboarding with a friend at least one weekend day each week for the entire winter and he has NO symptoms whatsoever. Also, I haven’t mentioned it yet, but I dated a woman for about 3 months right after first getting sick with all this, and I have just regained contact with her. She is also symptom free. I am of the opinion that this illness is transmissible during certain periods of its activity, like HSV for instance. I am also becoming increasingly suspicious that the most recent symptoms I am experiencing are in fact something else going around, which, given my reduced immunity from my ongoing illness, is causing me to have greater troubles with. The reason I say that is this: Recently, and I am noticing this more at work than anywhere else, there seem to be people who all have pinkish and flaky skin, like a mild sunburn. That is also how I started looking about two months ago. But my illness has been going on for three years and only now did the pink skin thing and rash start. While some do, most of the people at my work with the skin thing don’t have any other symptoms. So it stands to reason that the pink skin thing might be some nasty fungus blowing around or something like that, since we all (at my work) seem to have this pink skin symptom at the same time, regardless of whether or not any of us had any previous illness.

  55. @ Hudson

    The only thing that Floridafam and I are really disagreeingwith you sternly on is the notion that we should purposefully give this to anyone else. Whether or not its already spreading, that’s what you said, “go to you CDC and spread it”.

    And just for the record, I have NEVER once during this illness had a cough.

  56. like I said they don’t know how XMRV is transmitted. It could be the China virus for all we know. They think it came from America anyway.

  57. E, if you don’t have the cough then you may not have the same disease as me. I know that some seem to be immune but it seem to be a good majority that aren’t. So many people cough at my office and area that you’d think it was the winter time but it’s like 85 degrees out. It’s a dry cough and is intermittent. Runny nose is common. It’s very similar to what Hip talks about. Skin problems blotchy skin and wrinkling as well. Out of everything on the web, this website is the closest to what I’ve experienced. I’m just tired of people refusing to do anything about this. Like I said, people often think, it’s not my problem, I don’t need to deal with it. You don’t think that it’s not true? If that wasn’t true, everyone would be volunteering to work like Mother Theresa in some poor country the rest of their life or would donate half their money to cancer research rather than sprending millions to run for public office for their own personal gain like some governor candidates here in CA. People are again selfish by nature. If people are screwing me and everyone else who has it over, I’m not going to let that happen, I want to make sure they understand what it’s like to have this. I’m just tired of these people who refuse to do anything because it’s not their problem. I’m just looking for some action or just some acknowledgement by the CDC that something is going around and that they’re investigating it would be fine. The earlier the action the better.

  58. I don’t intentionally spread it to my friends. One of my friends has it now and all I did was hang out at his house for a day. I told one of my other friends about this.. course he doesn’t believe it since he calls me up to ask me to go get drinks. I talk to him over the phone but haven’t agreed to hang out. He’ll probably get it eventually but I’m just sparing him time. I don’t go out much anymore and don’t date anymore but this won’t be resolved until the CDC does something. Again, if people are screwing you over, are you going to sit there and take it to your doom? All I’m asking is for the CDC to investigate and some acknowledgement. Obviously, people refuse to do so because of selfish politcal reasons or were paid by the health industry. If they refuse to do anything, they are no innocent bystanders. At that point, why not give it to them?

  59. One more note.. what I’m saying by giving it to them is not going there to make out with people who work there. Again, for this illness I have, being in the same room or a handshake might be enough. You’re acting like this is HIV where there needs to be some body fluids exchanged. This is not the case with what I have. It’s everywhere here and airborne. The difference between this and the swine flu is that most people survive swine flu and can clear it. Most people can’t seem to clear this virus and it spreads most likely by air.

  60. @ hudson

    I have chronicled my symptoms in detail on this blog. If you read closely you will see that I have nearly every symptom described here. It has been speculated by many here that the symptoms vary from person to person, with some overlapping consistencies. On the main page of this blog, the word “cough” is mentioned only TWICE. Once in Hip’s account of the beginning of his illness, and then again a little way’s down when it mentions a MILD dry cough as ONE OF THE _FOUR_ WAYS this virus can start. Given those points, I think that perhaps a more plausible statement than your opening to the above comment might be that perhaps you do not have the same virus that is suggested on this forum. Taking a step back from that though, I don’t think you don’t have it. Rather I think that you , just like myself, have no idea what you have, but believe like myself that this website represents the closest thing to an answer since you’ve been sick.

    What you are saying is a bit hysterical in my opinion. You sound vengeful and are choosing indiscriminately who is to be responsible for you acquiring this illness. What about the doorman at CDC with a family and kids who might not have it, and despite your dire predictions just might not get it? Do you think its his fault that we all have this? Shall we go infect him in the hopes that he will infect the front desk person, so he infects the secretary of the assistant of the 50th in command, so that they in turn infect everyone else one by one in the whole building until the highest official at the CDC has it? Because then they will listen? Is that your plan? Listen to how that sounds man. We all are looking for answers; we all want answers. We are not going to get them by coming across as a bunch of nutbars who intend to infect the world lest they acquiesce to our demands.

    And furthermore, if you are so hellbent on getting this known then do what Hip and I have been asking. Send pictures of your symptoms to Hip so he can forward them to me. I am making a youtube video about this and its not going to be taken seriously with only two people in it.

    I’ve seen the rhetoric on this blog go from what I thought was supportive and informative to more of what I would expect on some conspiracy blog. If a real doctor comes across this site and sees all this crap about cover-ups and sinister government plots and plans to purposefully infect the masses to get our story out, they are going to dismiss us in an instant.

  61. This is just a suggestion, since many of you are much more adept at science and testing than I am, but what if someone made up a survey form? On the form could be listed multiple choice options, similar to what you see when you go to a new doctor. Have responses Y or N to: Location of residence, type of work you do, age, gender, race, family history, common symptoms listed, past sexual-drug-travel-sun history, friend/family who have same symptoms, duration of illness, etc. Have this form available here to be printed. Set up a P.O. Box and those who visit this site could submit their answers anonymously. Maybe HIP could compile the answers and see if there is some common link and post it here. It may be a complete waste of time, but it may be something to bring about a clinical trial for some of the suggested supplements. I’ve had this on and off for about 25 years. I read anything available on CFS, I obssessed about the subject, tried to convince my doctors, but eventually gave up fighting and listened to my own body. I have learned to manage it with rest, healthy eating(no processed sugar!), very mild exercise to try and stay toned (yoga is wonderful), avoiding stressful situations and stress-creating people as best I can, and taking regular one-a-day type vitamins with some immune booster supplements. The most important thing has been to not take the little things, or myself, so seriously (this helps immensely with the paranoia) and laugh whenever possible. Distract yourself, read, watch Pixar movies, listen to little kids laugh… anything to help you to remember to be thankful and grateful for everything you have. I am not making light of what anyone is going through and I suffer with this all the time to varying degrees. You just have to remember to LIVE, too. I wish good health to all of you… to all of US.

  62. @ Kathy

    Thanks for the suggestion, that’s not a bad idea. Maybe Hip or myself can look into that as something to include in the video project.

    When you say you’ve had this for 25 years, are you referring to CFS, or the more specific symptoms that are perhaps unique to what we believe is inflicting us, like the fine skin wrinkling, chronic sore throat, severe weight loss, muscle wasting, extreme cognitive dysfunction, etc?

  63. E, I have the cough but it’s not constant every so often but it used to be worse. I have the same skin wrinkling, redness, and elastin loss like the Ehler danlos syndrome (I’m in my early 30’s) like Hip mentioned and it mentioned about the China illness. I have never had anything like this before. The coincidence leads me to believe that I have something like this.

    E, you are naive my friend. I’m not angry at whoever gave this to me (they had probably no choice in the matter) but angry that people don’t do anything about it. No one other than people on this board or some at my office is talking about this. There is no mention in the media. I even mailed a letter about this to the local newspaper. Remember the HIV epidemic? HIV had been reported to be in the U.S. in the late 60’s. It was pushed under a rug at first and deemed to only effects gays and druggies. I don’t doubt the same is happening with this. ONLY WHEN MANY PEOPLE HAVE IT did the CDC and news talk about it.

    People in China feel hopeless about the non HIV virus since their government like they did with SARS swept it under the rug only to find out it blows up in their face. What do you propose they do about it since people just get ignored? If you create a youtube video, people can just dismiss it was hogwash like people talking about UFO’s on youtube (not that I don’t believe UFO’s exist). People don’t understand this until they have it. Like I said, one of my friends doesn’t even believe me since he still asked me to get drinks with him. Until, I caught this, I was in disbelief too since I was in excellent condition and health. However if this is so contagious and they too have it, they will act with more of a sense of urgency. I would if I was at the top of the CDC. Wouldn’t you?

  64. By saying I was in disbelief, I meant I wouldn’ve believed in such an illness. It sounds like something from a science fictiion novel. Before, I was in such good health that I felt like all I needed was to workout if I felt bad. I was like the RunningStick guy. Now I don’t even work out anymore.

    People in China resort to spreading it since they aren’t listened to and are considered a bunch of crazy people. All I want is the same as those in China. You mentioned about knowing about RunningStick and finding out where he lives and probably thought about giving it to him since he doesn’t listen and think we’re crazy. That’s how I probably would’ve thought before I had this and if someone told me this, I wouldn’t believe it (thinking going to gym would resolve it). The people at the CDC probably think the same. People just don’t care until they have it. My proposal just lowers the amount of time before the CDC may act. Otherwise it would take forever waiting on the generousity of people who might or might not care about your plight. Remember lessons from history (HIV & SARS). How long did it take for them to act?

  65. Hi E,

    Yes, I’m referring to CFS with the swollen glands, sore throat, sinusitis, fatigue … the whole package. I’ve had the problems with concentration since day one, too, preceded by pressure in my forehead between my eyebrow area and the dull headache/eye-ache. Mine began not long after I had my son in 1982. I had a blood transfusion and I wonder about it being the cause. I am HIV negative.

    In addition to the above, over the past 4 years or so I’ve noticed the skin wrinkling and parchment-like texture to the skin on my forearms and legs, particularly my right forearm. If I barely bump my arm, I get a dark purple spot at the site. There is some of this on my face, too, with that blotchy red tone. I attributed it to sun damage or aging, but the wrinkling is the same rippling effect like the pics on this site. I’ve always been thin, but my weight has fluctuated quickly up 20 lbs and then down 25, then up again over the past couple years, too. My temp runs below normal by 2 degrees. I have the tingling in the extremities and the skin neuralgia-like pain down my legs, across my shoulders, skin rashes across my stomach, migraines, etc… in short, all that is being described here I have. My doctor has told me it is viral and has asked me several times if I had noticed any bug or spider bites. He said some of it sounded like West Nile. Several of my co-workers have complained of similar things, so it is spreading, but most blame it on allergies which are rampant where I live, Central California, the asthma capital of the world. The air here is horribly polluted and dirty.

    Besides what I mentioned before, I’ve found that drinking lots of water, when I remember, helps with the skin tone. I mean LOTS of water. It can cause some swelling but it’s temporary. It also seems to act as a quick fix when my brain starts to fog, too. I’ve tried the ProBoost but I’m not noticing much improvement. The best thing for me is a Lysine-based immune support supplement called Lysine Plus. I take it when I feel the sore throat and baggage coming on. By morning, it has decreased in severity.

    I’ll keep monitoring this site and keep hanging on to positive thoughts for all of us. Thanks for your ongoing research.

  66. @ Hudson

    Naive? Are you fucking serious? How is it that I am naive? I’d propose I am a great deal more informed about most subjects than anyone you might ever meet and most likely you as well. You know NOTHING about me except what I have posted here and I have made no indication that I believe or do not believe any particular theory on whether or not this is known or unknown, whether it is man made or natural, or anything in between. I’m gettin kind of sick of your attitude bro. Because I did some research on RunningStick does not even suggest for a minute that I EVER considered trying to give it to him. I have been nice so far but I’m gonna be blunt now – How fucked up are you anyway? I DO NOT WANT TO GIVE THIS TO ANYONE AND IF YOU DO YOU HAVE PROBLEMS BRO! I choose not to speculate because IT IS NOT GOING TO HELP US. I am emailing news stations, emailing senators, contacting celebrities who seem from the news accounts to have it. I am talking to members of the medical community, one of which hopefully is reading this tonight for the first time. The right way to do this might take time but some fucked up sinister plan to infect the world so they listen is the stupidest garbage I’ve ever heard.

    What you propose, to infect others is just plain fucked up man. How can you be this sick and ever want to make someone else sick. Grow the fuck up.

  67. for sure infecting others is wrong man people need a chance to enjoy life not for others to take it from them. i would not want anyone to have to go threw this its probly the worst neuro disease induced by a viral agent out there. its just wrong i sure this has been already reported to the cdc because everyone im sure goes to the doctor for this and im sure the dr has seen more that just one case and when they do they have to report it. the agent is probly already known there not going to make any statements until they no how to handle it or prevent it.

  68. Unk, you are probably right about no one doing anything until they know more about it. I have all kinds of opinions about where it came from, about the corruption that might lead to it being covered up, etc but I don’t speculate on it here because IT IS NOT GOING TO HELP US. Getting every person suffering from this to start posting their stories on this blog will help us. Making a video informing people of it will help us. Stopping by the local ER or hospital and passing out fliers directing people to look at our blog, every one of us emailing all the people we can in the media every day, buying a domain and building a website where information and pictures will be able to posted. Those are the things that will help us.

  69. I tried the CDC on several occasions also tried to get my DR to send the CDC some of my blood samples (no interest from the CDC) They are not interested in finding any new pathogens

  70. Also we only get a cough when we get pneumonia (witch is twice for me this year and I never got it before this) And once for all four of my kids and wife. I did however have congestion for the first year of this.

  71. I now have a second doctor who is going to look at our site, and this doctor has requested to correspond directly with me via email about this. I am going to continue my efforts. I believe if we get enough of the medical community to recognize this, the CDC will have no choice but to acknowledge it. It might take a little time, but I am getting at least some results from my efforts.

  72. @ Kathy

    Thanks for clarifying. Its interesting to hear you’ve had it for so long. Have you experienced any indication that what you have is contagious, as the information on this site, as well as some of our experiences would suggest?

  73. E, you sound more angry than me.. you don’t have to use profanity. By me saying “naive” is in that I meant understanding human nature. Many people are sick in this world and people in governments choose to ignore those people because people have their own agendas and priorities. Is this fair no, it’s been like this since the begining of time. Why would they break the status quo? Do you think it was right for the CDC to ignore people and sweep things under the rug when AIDS was coming about? Answer me: do you think it was right for them to wait so long while people died? I’m not talking about giving it to regular people (although it is unfortuate people get it from being around me) but give to those in charge who won’t listen? If you told it to the powers at be (i.e. – sending in 1000 letters, calls, and youtube videos) and they don’t believe you or listen to you, what is your only recourse?

    Bernie Madoff donated $5 million to Lymphoma research (unfortuantely although it was other people’s money) only because his son had it. He didn’t wake out of bed and just say hey I’m going to donate $5 million to cancer research. If his son didn’t have it, he might not have donated anything or just maybe $20,000 just to be charitable. You get my point about human nature? Unfortuately you have to appeal to the selfish gene to get things done. READ “THE SELFISH GENE” book and so many thing in life would be answered. I’m not tryng to make enemies with people on the board but after multiple attempts and failing what other options do you have to get the CDC to listen? Did you read what Floridafam said? “The CDC was not interested in finding new pathogens.”

    It doesn’t matter now about spreading it.. it has already spread everywhere without me. I haven’t even visited the CDC yet as I was too busy at work. I just want the CDC to do something. I am watching the Giants play diamondbacks tonight and I believe Jonathan Sanchez has it. He’s got the classic red skin on his face and had a running nose all game like many up here in the SF area. Either this is some crazy virus or some pollutant that makes everyone ill.

  74. E, also so I can’t enjoy life either? I can’t go to the grocery store to get foods? So I should just starve to death? Should the grocery clerk near me in line of the store quit his job and starve to death too now that he was near me? Should his co-workers quit too? SHould their families avoid them? SHould they close the whole store? I can’t go to get gas at the gas station? Do I have to wear a space suit? You get the drift? Since you’re such a proponent of not spreading it.. do you wear a space suit when you leave the house? Do you NEVER shake people’s hands ever? If you told me that you wear space suits and shake people’s hands, I don’t believe you. Again, this isn’t like HIV where people have a choice. You sound like one of them idealists not in touch with the reality of the situation. AGAIN THIS IS HIGHLY CONTAGIOUS, if it’s gonna spread, you might as well give it to those in charge so they do something about it. THe sooner the better.

  75. E, I must admit though you’re idea of petitioning at local hospitals is a good idea. I haven’t thought of that one. Has any hospital officials or security tried to kick you out? I would consider it except for security trying to kick people out and no I don’t plan on wearing a space suit. Those people who come in contact or near me might get it or may already have it. How would you propose me not spreading it to them? Do I wear gloves and mask with the flyers as I’m passing them out?

  76. Ok E, here’s what you said to Runningstick,

    “After a little research, our good friend Kieth Loritz lives in Anaheim, CA. He likes to enter marathons. Keep talking shit buddy. I’ll come pay you a visit. Don’t mess with hackers :)”

    & this is what you said to me:

    “I did some research on RunningStick does not even suggest for a minute that I EVER considered trying to give it to him”

    C’mon if you weren’t planning on giving it to him, then what are going to do by visiting him? You gonna wear a suit so he doesn’t get it and have a nice chat? or are you threatening him.

    Runningstick is just ignorant like my friend who doesn’t believe me when I talk about this illness. If you say the poor security guard at the CDC building, well what about the gas station attendent or grocery clerk who got it from me being there to get food or gas? In fact if you think about it, many people will be infected by just me doing normal activities and waiting for it to go around that so many people have it than if ones goes to visit the CDC building. Many more innocent people would be infected this inadvertantly while waiting for CDC to act. By visiting the CDC building, one is indirectly going to the decision makers. If one decision makers has the symptoms and hears about the complaints from others, one would be more likely to act rather than just shrug it off like it doesn’t exist.

  77. I heard this doctor interviewed on the radio talking about the connection between health and disease and the voltage of the tissues in the body. The idea of measuring the voltage of human tissues is not new. The Pentagon had done a lot of research on the mhz of various tissues in the human body. What can be used to heal can also be used to kill of disable. Notice the symptoms this doctor had which he related to viral infections of the brain. He cured himself by altering his voltage.

    http://www.tennantinstitute.com/TIIM_MAC/Dr._Tennants_Story.html

  78. I am not going to insert my keys into a wall outlet to treat this “AIDS-like” disease. Thank you for the information, much is appreciated.

  79. @ E:

    Whatever this started out as, CFS or Epstein-Barr (the titers I had were very high back then), I’m not sure. There was nothing definitive. It started out slowly, just tired and not “well” (I blamed it on being a new mother), and about 2 years after my son was born, I became very ill with a bacterial pneumonia after visiting one of the So Cal theme parks. I never completely regained full health. It has slowly eroded my immune system, including leaving me allergic to … well, LIFE. Seriously, allergy testing shows I’m allergic to all the items on full scratch tests to a +3 or +4 intensity (+4 is the highest). I had some hay-fever as a kid, but nothing like this. It’s all immune-response related. How contagious it is, I’m not sure. I have dated and could not pin-point that this was passed on to anyone. The man I am now seeing has not become ill with any of these symptoms, but my sisters have it and my son also seems to have many of the same problems, but not all. One of my sisters has ended up with scleroderma and lupus. Both are auto-immune disorders. Like I said, though, living in this area with the air quality problems and extreme allergens (agriculture, dust-dirt, pesticides, etc.), a lot of people I know exhibit similar symptoms, but blame it on allergies, although I’ve heard several people, mostly co-workers, comment on how much sicker they’ve become over the past couple years. All a mystery…a lot of questions and what-ifs. If a cause or root is found, that would be wonderful, but in the meantime, I have to concentrate on the positive.

  80. Kathy, have you tried to go out of the area for a while to see if any symptoms get better? I did read a while back that Central California Valley does get a lot of pollutants that gets stuck there. Personally, I’m noticing a lot of people in my area with the same symptoms as me. I’m gonna try to get out of the area for a week or so in a few weeks to see if anything changes.

  81. Oh gee, psychological trauma FOR SOMETHING THAT IS COMPLETELY PHYSICAL.

    AGAIN, THE CAUSE AND EFFECT THEORY TAKEN ADVANTAGE OF BY THE CDC!

  82. I am very impressed with Psychology Today magazine which, even though its subject area is psychology, strongly supports the physical basis of CFS and fibromyalgia.

    This magazine is also very aware of the political undercurrents surrounding CFS: what it calls the “Flat Earthers” who are immorally trying to make everyone believe CFS and fibromyalgia are not real illnesses.

    Here is a recent article from Psychology Today.

    I suggest that everyone familiarize themselves with these political undercurrents, and take every opportunity to post comments throughout the web every time you come across people with these Flat Earth opinions of CFS. Only that way will you help to shift people’s perspective or CFS and, ultimately, get a lot more research money allocated to find a treatment for this disease.

    It took billions of dollars to turn HIV/AIDS into the treatable disease that it is now. Most people with HIV are, with help of HAART, fully able to work and function, and live a pretty much a normal lifespan.

    This is the kind of budget we need for CFS, but at the moment, CFS only gets a few million each year – which is not enough to find a cure for CFS. Our budget must be turned from millions into billions. In fact. this high investment will yield very rapid profits, as CFS has been shown to cost many billions each year to the economy, in terms lost work from people too ill to hold down a job. Cure CFS, and and you actually save money and improve the economy.

    The number of people with CFS is ten times more than the number of people with HIV. So why have we been neglected? Most of the blame must go to these political factions (mainly insurance companies), who have a strong interest in keeping CFS officially classified as a psychiatric condition. For psychiatric conditions, insurance rules specify that only two years of disability payouts need be given, after which payments are stopped; whereas for physical diseases, patients must be given payouts for their whole life. With there being perhaps 1 million people with CFS in the US, you can see why disability insurers like UNUM are desperate to maintain CFS in the psychiatric category officially, and not a physical disease – which it actually is. The BBC has investigate the UK branch of UNUM, and UNUM’s attempts to manipulate the UK welfare system to suit its own agenda; the BBC described UNUM as a “rogue firm”.

    If you want to read about these morally reprehensible political factions, start with any of the three Google searches here:

    UNUM Insurance chronic fatigue syndrome

    Simon Wessely chronic fatigue syndrome

    Wessely School chronic fatigue syndrome

    Investigative journalist Hillary Johnson (who has CFS herself) also maintains a web site about the CDC scandal concerning CFS.

  83. Anxiety in mice caused by gut inflammation

    http://f1000medicine.com/article/p4js1g2qyv6hvxp/id/4164956

    REPLY: Very interesting study, phooph. It says that by lowering TNF signaling and lowering inflammation, this was shown to lower anxiety in mice.

    As a matter of fact, TNF lowering herbs were the first thing I tried, but in my case, they did not help very much. Another inflammatory signaling pathway is the 5-lipoxygenase (5-LOX), but lowering 5-LOX with herbs did not help improve my anxiety much either. The 5-LOX pathway often operates in arthritis, as does the cyclooxygenase-2 (COX-2) pathway.

    However, when I tried COX-2 and NF-kappa-B lowering herbs, I got great results, especially with the latter.

    – Hip

  84. @ Hudson

    No matter how you want to spin it, infecting anyone with this on purpose is wrong. Simple as that.

    You have made several references toward your endorsement of infecting others with this to facilitate a more rapid spread of it, so that greater attention might be cast on our plight. That is just plain messed up. And because I think so does not make me ignorant of any perspectives one might take on the origins of this, or whether or not its being covered up by any one particular agency, or any other point for that matter.

    So if my point isn’t clear by now:

    infecting anyone with this on purpose is wrong.

    infecting anyone with this on purpose is wrong.

    infecting anyone with this on purpose is wrong.

    infecting anyone with this on purpose is wrong.

    infecting anyone with this on purpose is wrong.

    So spin it any way you want Hudson, but like I said.

  85. E, I had numerous questions I asked of you on the prior post. WHY CAN’T YOU ANSWER ME? Do you wear a mask and gloves when you are out in public? If you are aware that this is contagious and not use protection out in public to prevent others from getting it, then you are guilty of the same thing. Negligance.

    What was the purpose of your conversation with Runningstick? It’s hypocritical. You’re saying it’s wrong to spread it but threatened to spread it to him or if not spread but maybe commit violence to some ignorant guy who doesn’t have it and disagrees with you. How hypocritcal can you be? The CDC probably does the same thing as runningstick. THey are ignorant and don’t believe you. What if the CDC just tell you to go get some excercise like Runningstick? STOP BEING HYPOCRITICAL & Be logical about this. I’m tired of this holyier than thou attitude. It doesn’t make sense with something so contagious. I’m not spinning anything.

    Look, I’ll admit that I mentioned about going around and doing your usual routines and spreading it by just being around people. But in thinking about it, it does no good to give it to average people so I will admit that. But I will still try to live a normal life and not let this illness force me to live like a hermit. You can call it spreading it if you want. However, it only makes sense that the decision makers understand your situation. THose are the ones that are responsible, put it on their shoulders, give it to them.

  86. Wow, I really think the Giants staff and broadcasts have it too.. the after game show had Dave Fleming with his face all red and Duane Kuiper coughing. For some people they’re gonna get worse.. their face is gonna turn really red and blotchy. I haven’t gone to any games this season to be honest.. I’m just seeing this on tv. This is becoming an epidemic up here.

  87. Hudson yes, if you are as infectious as you say and you go about your bossiness as usual without taking precautions to try not to spread a disease that you believe to be terminal to innocent people then, you are in my opinion A piece of crap that would not only deserve the end you believe to be coming for you but should also be criminally prosecuted (You come off as a selfish ahole who does not care about anyone but yourself)

  88. I have just been watching the videos of The Invest in ME International CFS/ME Conference 2010, and there are some very interesting research updates given by the various researchers.

    You can buy the DVD here: http://www.investinme.org. (It is always good to see and hear what the world’s leading CFS researchers have to say).

    Some snippets:

    • XMRV: very preliminary evidence from Dr Paul Cheney is now showing that this virus is slightly contagious by normal household contact, in that 50% of all family members that have a CFS case at home are XMRV positive. Many families suspect subclinical illnesses in these other members.

    This shows that XMRV is only very slightly contagious (if it were more contagious, all the family would probably have it after many years of living together); but nevertheless, XMRV can spread person to person by ordinary household close living, it seems.

    • Cheney also talked about one biomarker that is common to ALL CFS patients: oxygen toxicity. Usually it is difficult find good biomarkers for CFS, because some patients will have one biomarker (like low NK cell activation, for example), but other CFS patients may not (but may be positive for some other biomarker). So it is hard to find a universal biomarker for CFS.

    However, Dr Cheney has found that, without exception, ALL patients with CFS have oxygen toxicity. They cannot process oxygen properly in their bodies, and as a consequence, the oxygen causes a lot of oxidation reactions in the body. Oxidization reactions are also called oxidative stress.

    If anyone takes omega 3 fish oil, by the way, this gets rapidly oxidized in CFS patients to a toxic by-product, so Cheney recommends high-quality extra virgin olive oil instead, which is more robust in its resistance to oxidation.

    Cheney uses the drug artesunate to help treat this very damaging oxidative stress state found in CFS patients, and says artesunate is a valuable ally in the overall CFS treatment. There is a herbal version called artemisinin (available without prescription), from which artesunate is derived, but this artemisinin herb unfortunately has low bioavailability.

    • Dr Chia again of course talked much about noncytolytic enteroviruses. These noncytolytic “stealth” viruses are also called “replicons”. Replicons are self-replicating stands of viral RNA that live inside, and take over, our cells, causing various diseases, like CFS. He said that in his opinion, there is no reason why CFS should not be a treatable or curable disease.

  89. hip I believe that XMRV is most contagious during the primary infection and becomes less and less contagious as your body fights it (it would explain my family) my 4 year old got it when he was born (Ibelieve from breast feeding) and he has it as bad as I do the 3 year old girl show only a lesser severity and my new born (8month girl) does not seem to show any symptoms my 12 year old boy has only recently (in the last couple years) started to show symptoms what are your thought on this

    REPLY: Have you considered getting one family member to take the XMRV test at the Whittemore-Peterson Institute, via their lab at http://www.vipdx.com

    I know it is still very expensive at the moment ($600, or thereabouts, I think), but they have just updated the sensitivity of this test, in order to provide more accurate results. I think the price will go down in a year or so.

    – Hip

  90. Can we curtail this conversation about infecting others. Of course I would not advocate passing this virus to others, but I suspect that Hudson is only talking about it, rather than doing it, as a kind of outlet for his anger about being ignored by doctors – an anger which is very understandable to say the least. Being ignored in this way results from over 2 decades of dire negligence by the CDC and the Wessely School psychiatrists.

    My feeling is that these are words of anger, not actions that Hudson would actually engage in.

    Also, on the subject of anger: in certain people, this virus does cause a high state of constant anger. It may be due to the virus infecting the brain stem, which is an area of the brain that controls anger. The type of anger created by this virus is quite a nasty one, so this may be why these angry thoughts of infecting others do arise. Certainly in China, there are a lot of people with the Chinese virus going round infecting as many people as they can. So perhaps the virus actually does cause this kind of nasty anger.

    In any case, even taking precautions, I know that just from me, my virus has spread to over 30 people that I know, and probably from these 30, this virus has spread to many hundreds of further people that I don’t know. All from me as the single “ancestor”.

    So this is not like HIV, in which an infected, but ethically-aware individual can take precautions ensure that others do not catch the virus from them; my virus cannot be stopped so easily. Fortunately, in most people, its symptoms are only relatively mild.

  91. Hip yes by all means lets end the BS conversation (I tried to stay out of it for as long as I could stand) but at the end I had to put my two cents in sorry

  92. Also Hip I understand passing it without trying but those statements where about infecting others on purpose (Witch is totally barbaric and EVIL)

  93. This is a very complicated issue, and it is not black and white. I know friends with this virus, who know that they have some lingering bug, yet this fact did not seem to cross their mind when they went out and found themselves new girlfriends and boyfriends – who of course then picked up the virus as well, which was later passed to their parents, etc.

    But most of these friends only had relatively mild symptoms, so perhaps in their minds, this virus is not such a big deal. On the other hand, when you are hit very badly by this virus, you tend to see it as something much more horrible.

    The difficult question comes when you want a girlfriend and boyfriend; what are the ethical issues there? Do you stay alone, or do you take a chance and hope that that your new girlfriend or boyfriend will only be minimally affected?

    If you are a thinking, ethical person, this may be quite a dilemma.

    In some sense, ignorance is bliss, in that most people I know with this virus do not consider these repercussions. So this ethical problem never really arises for them.

    And at all times you must bear in mind that many of the viruses you have in your system will have been acquired from your previous girlfriends or boyfriends. I was tested for many viruses, and like a lot of people, I have HHV-6, EBV, cytomegalovirus – all of which are associated with severe diseases, or at least the potential to precipitate them. So you can start to think: where did I get such-and-such virus from; who gave it to me? I suspect many are caught via kissing. A lot of people pick up EBV when the first start dating, for example.

    And you may also start thinking that there are many more respiratory viruses out that there you would not really like to acquire; like parvovirus B19, or HHV-6 variant A, but the next person you date may give it to you unknowingly by kissing.

    So these considerations about our virus must be viewed in the general context that we are always passing viruses to each other since the beginning of human history. I think this is one reason why doctors often play down considerations of contagiousness of respiratory viruses; because they don’t want to create too much worry in the minds of their patients. All the medical professionals I saw told me that this virus was nothing to worry about.

  94. Floridafam, about 1 of 4 people that I see in this area have it. It’s increasing. I haven’t done anything other than go about my normal activities. People at my work all have it. How am I being selfish? I just suggested giving it to the CDC who doesn’t listen. I’m no longer suggesting to give it to average people. That doesn’t do any good. I’m trying to do my best to benefit human society by making the CDC realize this earlier rather than later. Make CDC people realize this exists. How many people are going to suffer and be infected without even knowing about it? Before CDC does something? You and E all just say it’s immoral to do this but give me some reason or logic why I need to go into quarantine. DO YOU WEAR GLOVES AND MASKS YOURSELF? I don’t wear a mask and gloves when I go out in public, do you? I just can’t stand the hypocracy. I consider myself a good person and want to help mankind. By being a hermit, it does no good either since someone would still be spreading this knowingly or not. Otherwise, should I kill myself? I’ve asked you and E many questions about this and yet all I get is that you say it’s immoral to spread it. You can’t even answer my questions, what weight do you have? I’m just open about how I feel about this.

    Hip, just wondering if Kava had helped you any.

  95. Hip, thanks for your words of wisdom.. some people do think in terms of black and white. I’m glad that some doctors have acknowledged that you have something and they tell you it’s nothing to be worried about. However, I do see some people (particularly older people) whose bodies begin to look really bad after getting this (some faces getting extremly red). I am afraid that I will begin to look that way as my arms are getting really red. I must admit no everyone gets it bad or they have the cough but what I do notice is that they will get the red skin and wrinkling. To me, the long term implications can’t be good and they are not understood. HIV causes long term chronic disease. What scares me is where this disease will lead. I’m just trying to think of a way for the CDC to look into this other than the usual write them letters.

  96. Hip, you mentioned about it spreading to 30 people you know of. JUST CURIOUS HAVE YOU MET OTHER PEOPLE WHOM YOU DON’T KNOW THAT HAVE IT? It seems that many people around here have it. 1 in 4 people I see have it like people shopping at fast food restaurants and stores. That’s why it seems so contagious to me. It may be possible that this disease has mutated into a more infectious form. I don’t blame whoever gave this to me since they didn’t have a chance in the matter. So many people have it that I don’t feel as bad as I did in the begining. Still it would benefit mankind to investigate this.

    I must admit I am angry about this illness. I’m not always mad but frustrated by the lack of action by people. Some people that I know have this blow it off like they didn’t care. I really care about society and mankind and I just want some action. Psychological effects I don’t know.. I have had bouts of anxiety before and anger who knows is part of it. I just feel like I’m looking at the big picture of this and some just want to look at the small picture. We all want the same thing yet have different ideas of accomplishing it. Like I said, I haven’t had a chance to spread it other than going to work and getting fast food, gas, and groceries. I don’t even date anymore. I don’t go out for drinks and I believe I live a very unfullfilling life as many people who have this do. If my life, is so unfullfilling, what more can I do.. kill myself? I am considering driving to the main CDC office in Atlanta to tell people there about this and have them pay attention to it. That’s all I think I can do. E did have a good idea to get petitions going. I wouldn’t wear masks and gloves since that would alert security right away.

  97. FloridaFam, I NEVER said I believe this virus to be terminal.. I just said that it needs to be investigated in terms of long term effects. People don’t die right away or else CDC would definitely take notice. Maybe it does have long term effects. I brought up HIV and HEPC since those are chronic diseases and don’t kill right away but do in 5 to 20 years without treatment. With this illness causing damaging effects on the elastin tissues, it can’t be good long term.

  98. hudson I do not believe I am as contagious as you seem to be I believe my illness requires a fluid transfer of some type

  99. Floridafam, perhaps we have different illnesses then. The one I have seems highly contagious. Pretty much everyone at me work has it. Whatever I have, I believe is airborne.

  100. Floridafam & Hudson, you’re both right. There seems to be a period between catching this virus and recovery that the virus is less contagious. At the late stages of this virus, the “non-HIV AIDS” stage (basically you waste; your skin peels all over, you become less immune to everyday viruses/bacteria, your skin becomes ashy grey/pale, loss of some vision, greater neurological effects, etc. etc.), you are extremely contagious. Your sweat, breath, and mucous.

    Newer infections (to a non-infected individual) start progressing rapidly to light-moderate conditions around 2 weeks after initial infection. Trust me on this–I am right, I just moved jobs and have passively infected a whole department store and watched the progression. I was forced to. Every job I go to for the past few years I watch as others get sick, they have a good idea that it is me but federal discrimination laws prohibit harassment of any sort at the work place. Again, there is nothing I can do, I have to make a living somehow.

    I suggest you all buy life insurance. I am just going to enjoy the rest of my few years left and try to make it up to the people I’ve hurt.

  101. Yuri, don’t blame yourself for this. I don’t blame whoever gave this to me. It could’ve been someone who walked by me (who knows). This is so contagious. The only ones to be blamed are the CDC or the doctors in control who refuse to look and listen. Yuri lives closer to me than many on the board. It is just spreading like wildfire. I went to a store 20 miles from where I live and noticed some people there have it too and in SF too. My guess is that it’s the one from China since there are many Asians here and it easily could’ve flew over. It’s not worth it to speculate anymore. Yuri, do you believe that the majority of people who have this will have significant deterioration of their health over time? You’re further along in this than I am so some info would be good since I like to know how I will be a few years from now. If you can put it into a timetable for us, people would have a better understanding of what one might expect.

    I feel that if it’s a virus, it can be treated or controlled. Technology has gone a long way. However getting those in charge to act and getting the treatment approved is a different matter. FDA takes forever to approve anything. As long as this virus doesn’t mutate the way HIV does, there should be a drug that can treat this. They finally have a drug that can cure 75% of HEPC infected individuals coming out next year. With that, I believe the technology is there. Again, the CDC or someone in control needs to take notice before it’s too late where everyone in the world is infected.

    REPLY: Hudson, when you say, “I went to a store 20 miles from where I live and noticed some people there have it too and in SF too”, note that you cannot tell at a glance that some has this virus. You may have suspicions, but only if you have observed the person over a long period and seen their symptoms develop over time can you get a more definite picture.

    – Hip

  102. Yuri, if this disease is as bad as you say. If I get life insurance, I don’t know who I can write for a beneficiary since mostly everyone I know has it.

  103. When I have the time I will show you “hudson”. You will be surprised at the similarity to the AIDS virus; what the “unknown” disease does to the body. How fun it is venture out of my home for work or shopping! All of the adoration as the people gather around to stare at death!!!

    REPLY: Do you look very ill, then, Yuri? The people I know with my virus do not look that ill, even with the fine skin wrinkles. I don’t look like a picture of health, but nothing more than that. The real symptoms are the state of mind, fatigue etc, in my case.

    – Hip

  104. REPLY: Hudson, when you say, “I went to a store 20 miles from where I live and noticed some people there have it too and in SF too”, note that you cannot tell at a glance that some has this virus. You may have suspicions, but only if you have observed the person over a long period and seen their symptoms develop over time can you get a more definite picture.

    – Hip

    Hip, True.. I suspect they have it since they have the same livedo reticularis blotchy skin and have runny noses or coughs all at the same time. Those are the most trade make symptoms of the illness around here. Skin wrinkling happens later as it’s starting to happen to me. It’s sad that it effects families and even little kids have it except they don’t have the wrinkling. Those are the same symptoms I have and those in the office.

  105. Yuri I don’t look sick, neither does anyone in my circle that is the problem, no one looks sick but we are that’s why no Dr takes us seriously

  106. And I am going on 6 years now. shit if any of us look like we where wasting or a aids case we might get more attention but that is not the case with my illness

  107. Yuri, have you ever looked into the possibility that you may have Morgellons disease? Morgellons appears to be a newly-emerging disease. It is particularly concentrated in California, but is found all over the US, and indeed the world. The psychological symptoms of Morgellons are very similar to my virus (but perhaps Morgellons has stronger anxiety / psychosis symptoms). Sometimes people with Morgellons do get gray skin, the color of cigarette ash. Often there is skin thickening, skin sores, and skin wrinkles. Tiny fibers also pop out the skin in many people.

    See these links for the overall symptoms of Morgellons:

    http://www.healinggrapevine.com/morgellons/morgellons-symptoms.html

    http://www.mayoclinic.com/health/morgellons-disease/sn00043

    Morgellons Skin Pictures

    Many people with Morgellons say that the disease started after getting a sore throat.

    The CDC are aware of Morgellons, and are currently researching it.

    There are quite a few stories of people recovering from Morgellons disease, often with the aid of dietary supplements. Here is the blog of one guy that I have had some conversations with in the past, who says he cured himself of Morgellons: http://morgellonspgpr.wordpress.com

    Here is his “Poor Man’s Protocol” cure

  108. I know that what’s going on here isn’t Morgellons. Morgellons sufferers get insect like crawling under the skin and sores with fibers. I don’t have any of that but more like livedo reticularis on my body. My father who has it too, his skin looks really bad. It seems that this illness here causes damage to the blood vessels. That’s what livedo is with issues with blood vessels. In fact, my veins are more visible as there is elastin damage. If everyone had this, there would be no one to do beauty products commercials anymore. Morgellons is not as contagious as this or else many more people would have it. Don’t know what I have exactly but if Yuri would care to show us a picture of something similar, then I could tell if it’s the same as what’s going on here. Yuri doesn’t live too far from where I am so I am concerned.

  109. Tell me Yuri if you have that. Livedo is an earlier symptom of this and skin wrinkling too.. I don’t know what the later symptoms are.

  110. my wife has had that all her life and my kids legs look like that according to the DR it is caused by poor circulation

  111. Hip people in your group appear healthy or do they look ill?

    REPLY: Only the older people (65+) look a little odd, displaying more prominent fine wrinkling of the skin, and these elderly actually get saggy skin as a result of this elastin loss. But apart from these elderly, most people in my group look physically OK.

    I sometimes have the blotchy skin appearance (livedo reticularis), but no more than the intensity indicated in the picture that Hudson posted above. In my case, this livedo occurs mainly only on the top of my feet (and to a lesser degree, also on the top of my hands, but this is almost not noticeable). My livido is more purplish, like this (but slightly less intense than in this picture, and only on the top of my feet).

    My livedo is a variable symptom: it is only there on some some days. It also disappears if I take blood thinners like ginger (livedo is associated with high blood coagulation).

    In general, I look physically OK, but my “aura” is of a person a little withdrawn, lacking in sharpness, and feeble.

    I might add that facially I seem to have aged a lot after getting this virus: I have acquired a lot of lines on my face. But that just makes me look older, rather than ill. I am hoping that when I find a good treatment for this virus, the elastin will regrow, and the skin will return to a more supple and smoother condition.

    – Hip

  112. On Morgellons: people with Morgs do get “insect like crawling under the skin “, but I think this may just be the same pins and needles (paresthesias) as we have, but they have interpreted this sensation as insects under the skin. People with Morgs think often that they have a worm or parasite infestation, so they may be erroneously thinking that these parasites are “wriggling” under the skin when they get their pins and needles.

    It is not known for definite whether Morgellons is contagious or not. There are cases of families who have multiple members with Morgs, suggesting that it might be transmissible. Morgellons may be similar to CFS, in that the viruses associated with CFS are contagious, but these viruses do not cause CFS in everybody, just in a small minority. SO most people assume that CFS in not contagious; but it is if you are susceptible.

    Livido can be a symptom of Morgellons. Not everyone with Morgs has the fiber or the sores. Many people with Morgs often get into a paranoid and highly anxious mental state, with clouded judgement. This change in mental state is caused by the altered brain chemistry resulting from the infection.

    There are several illnesses with very similar symptoms to ours: lupus, Lyme disease, chronic fatigue syndrome and Morgellons have a lot of overlap of symptoms, so you can easily get a wrong diagnosis.

  113. Hip YES aging faster that is one of my problems getting gray hair and yes the skin problems I hear that definitely let me know if you find something that helps

    REPLY: Whenever I find something that treats the symptoms reasonably well, I email out the info to everyone who has commented on the blog (provided they entered their email).

    – Hip

  114. Anyone get bone spurs with their illness I have them popping up and I dont understand why maybe something to do with having low vitamin D I was tested and have low D but when I was originally tested they said I had very high calcium levels. Also tested with low testosterone (Dr said that is normal with chronic disease) I hate whatever is screwing me up

  115. I would like to organize a “Skype” conference with everyone participating on this board. If you are available please post at what time you are available. Skype is a free VoIP program–this is useful because not all of us can afford long distance calls. I would like to have the first Skype conference next week.

    Skype to Skype is free, there are charges for other things but simple chat and voice on Skype to Skype networks are free. Please consider this option.

  116. Hip, I’m with you in terms of seeing the wrinkling of skin. My skin has lost a lot of elasticity the last few months. That is one signature symptom of this illness. I just twisted the skin on my foot around like a pretzel. There’s no way it would do that before. I don’t know if Morgellons has that feature.

    As far as livedo, it’s a signature symptom of people who have it here. Some have it more pronounced than others. It’s basically dialated capillaries and so blood flow effects it as far as it being visible. When I’m laying down on my bed, it’s less noticeable. When I’m standing, I can see it on my legs and arms. I’ve never had this condition before. It looks like bad but not as bad as some others. This illness is spreading as I saw a family tonight with everyone with this condition. Their little kid who was about 3 years old had it. Poor little kid had livedo all over and runny nose that I can see the mucus coming out. Conditions like this make me angry that no one says anything about it. The whole family looks infected and they’re not young too. I wanted to talk to them about it but it’s such a personal topic that it’s hard to approach them about it. I didn’t want to say, “Hey, your family has an illness.” Urghh

  117. The 3 yr old is the youngest person I’ve seen with livedo. Poor kid was crying like there was something wrong.

    Yuri, I don’t mind talking over Skype. I’ve never used that system before but I have some time next week to figure it out. If you want to talk about it.. how about next Tuesday or something like that?

  118. Hip, I believe that we have the same or similar illness. My skin is much thinner than it used to be. Have you tried the Kava and did it help your anxiety at least? I may have a variant of your virus that is more contagious here. It’s not uncommon that viruses mutate into more contagious forms. Like I said, people at local banks and stores have it too. By you confirming the livedo and skin wrinkling, we may have the same illness.

  119. well everyone went to the the best hp in the nation and they told me we ve seen this before u just need to exercise and with time you will get better and told me to go see a shrink talk about being completely abandened by the medical community i can asure the what ever this is its not hiv for i have had special tests ive dont no what to do anymore they tell me just to fallow up with specialists for each of my symptoms which will be just a waste of cash i give up i dont think ill ever get any answers.

  120. I will reply with my skype name soon enough.

    REPLY: Many days I find I am too tired to socialize or even think, so I always prefer communications by email; but you guys go ahead with this Skype chat.

    – Hip

  121. I guess I am Infected this horrible disease. I am chinese and I do believe there are loads of people with this virus and most of them do not know anything abt it at all. Anyway I will do anything I could to find a cure at least a way to reduce the symptoms. Thanks everyone especially hip for your efforts and I believe we will be fine and out of this nasty disease.

  122. In china most people insist this is a new type of HIV virus since the symptoms are so similar. But it has many same symptoms as Cfs and interovirus And it is found in china some people are obviously immune to this virus and some will recover and symptoms free but unfortunately some will definitely get more and more serious symptoms. This virus do attack humans immune systems but not as seriously as HIV and some of the chinese with this virus their cd4 recovered to normal level after 3 to 4 yrs and their symptoms are no more that serious.

  123. By the way. I have not found anyone living with me have the similar symptoms but they do cough and there seems to be much more people coughing. By the way I do not live in china for several yrs but in Australia it is very rare to find so many people coughing even in darwin and some very hot areas. Besides I find lots of travellers from europe cough very much I do not know why

  124. Thank you very much for writing Yc.

    One of the big mysteries in CFS and enterovirus infections is why many people are able to clear these enterovirus infections from their bodies, but in other people, this virus remains as a persistent infection, often leading to CFS or heart disease. Enteroviruses are quite immuno-suppressive.

    There must be some differences in the people that succumb to persistent enterovirus infection, compared to those who can eliminate it from their system.

  125. Following the CDCs recent success in not finding XMRV the agency has been discussing future plans for its CFS team. “The failure to find XMRV was an outstanding success” said a spokesman chirpily “and we’re confident this is a failure we can build on. We truly believe this team are capable of not finding lots more stuff”

    When asked if attempting not to find stuff wasn’t a little overly ambitious in 2010 the spokesman replied “Obviously it’s a huge challenge, I’m not denying that but given sufficient funding combined with a complete lack of supervision I really think this team could pull it off”

    “The key to not finding stuff” explained the spokesman “is to not look for it with a completely open mind. Bill has often said they’re prepared to have a good old look for anything but are sure they’ll be able not to see it. I’m confident this team could go on to not find much bigger things”

    “Now I would like to deal with the claim this team failed to collect blood from the wrong people. Nothing could be further from the truth. Bill personally phoned anyone who looked or felt unwell and advised them not to donate”

    “The problem with the NIH and FDA studies is contamination. These samples ended up with XMRV in them because they were taken from people with the virus. Taking blood from sick people, examining it profesionally and reporting what you find is completely unethical and leads to the sorts of results its best not to talk about”

    When asked if the CDC were attempting to censor other results the spokesman said “this isn’t about censorship, it’s about stopping people reporting what they’ve found. Making a link between censorship and stopping people reporting what they’ve found is very unscientific.”

    REPLY: This is very amusing.

    – Hip

  126. @ Hudson

    Most of them have wrinkled skin and livedo. And even a much thinner skin. Right now the skin of my feet starts to wrinkle and sometimes they are very itching. My hands and legs are quite easy to be numb. the numbness is very serious when I wake up. I can feel my whole body shaking the moment i wake up and it is quite like the heart beating sometimes.

  127. @ Hip

    Thank you 4 your explanation. I guess if someone’s CD4 increased back to normal, it is quite a good sign because your immune system starts to kill the virus and the speed is already higher than the speed of the virus replication. Some of their symptoms are much relieved during this stage and some can completely clear the virus. This virus is not like HIV because it can not mutate that fast as HIV does. I guess that is the reason why some can clear it after several yrs

  128. Yc, Thank you for those photos. Are those rashes in the begining pictures itchy? I think I had some rashes like that couple of weeks ago, they were itchy. Some pictures are hard to tell but I think we might have the same virus. I have had numbness in my arms before. It’s usually when I wake up and have been sleeping on the side. The blood vessels are not as strong. My blood vessels are now very noticeable. You can make a road map of them on my leg. How many people in China do you think have this? I find that many people have it already here. Some with noticeably worse symptoms. How many people do you think can clear this? Do they not have anymore symptoms after a few years? I’ve noticed that some don’t get a runny nose or cough but will get livedo that gets worse to where their face gets red. Hip mentioned about this virus hiding in CD4 cells before. Wonder even if CD4 cells rebound, whether the virus still exists in the system.

    Floridafam, I hope that post about the CDC was a joke. I doubt they would make open statements like that. If it were true, I would have no confidence in the system. It would be like a decade before they recognize anything. Another 15 years before a treatment comes out. Who knows where we’d be by then.

    REPLY: Of course it is a joke, Hudson. But at the same time, it is also true as well. The CDC are very likely not finding XMRV, because they are not using blood samples from proper CFS patients.

    – Hip

  129. you guys do know you never truly clear a virus from your system. You can control a virus but once you have it, it is yours forever

  130. Hudson:

    I just tried two days on kava kava, at a dose of 250 mg twice daily, as my initial test. I did not get any lymph node swelling or pain; I did not feel better or worse. I am doing this cautiously, so now I will have a break, and then try kava again for a longer period.

  131. However, I have all the other symptoms still.. it’s amazing how many are sick around here but yet no one does anything..

  132. hudson

    I do believe there are a huge number in China having this. There are so many blogs on this issue and some even have more than half a million visits. And seems to become even more serious since the gov does not do anything. According to their statements, it is highly possible to be infected by spit sweat which is really horrible. But it is very possible that I was infected in Australia. I have not go back to China for nearly 2 yrs and I believe there are people infected in this country as well.

    I have to say when your body is able to control the virus, the symptoms are relieved but not disappear. This is quite like CFS. Only few can totally clear it. Actually this is only based on some people’s experience and I can not ensure it is true. By the way, it is quite common in China that women have much milder symptoms than men.

  133. Floridafam, have you considering trying different anti-virals? Besides the commonly available ones here like acyclovir.. For you, if it is XMRV (retro-virus), chances are one of the many HIV anti-virals would work if its a retro-virus. The hard part maybe getting a hold of some since you don’t have HIV. I never tried buying pills from overseas but they might be able to sell anti-virals from India or something like that probably at cheaper prices.

  134. This also makes me curious if people on HIV medication or HAART therapy would be immune to this illness since they take the highest amount of anti-virals. THis virus however that I have is airborne and probably like a entrovirus. No anti-virals out there for that?

    REPLY: There are no antiviral drugs for enterovirus available as yet, but there are herbal supplements that have been shown to have some anti-enterovirus activity. I have listed some of these in the this blog.

    Dr John Chia is currently working with some pharmaceutical companies to get some anti-enteroviral developed.

    – Hip

  135. @ Hudson, hi does this cause disturbed sleeping patterns and breathig problems? thanks.

    REPLY: Yes, it can cause insomnia and disturbed sleep patterns. To fix this, see the comment about melatonin just below.

    – Hip

  136. hi, ive had all the symptoms of this virus and i also have breathing problems,it all started 17 months ago for me,i was fit and healthy,weight trained 5 days a week and did 500 situps daily,i suddenly started to get short of breath while training one day,and started to go less and less had burning sensation in my lungs then my throat swelled up,also had a rotten taste in my mouth and swelling in my lips that hasnt gone even now,also i have some lumps in my mouth i keep getting told are salivary glands,after repeated trips to the nhs specialists and private specialists i still have no answers,the only thing i have found out is by going to the breakspeare hospital,they found some herpes involvement in my problems,and epstien barr,one thing i have noticed is since the swine influenza outbreak,which was around the time i got sick is a lot of people that are unwell,in my oppinion stopping all testing for it is a big mistake,i wonder if ive caught epstien barr,herpes ect whats the odds on me having had or even having the swine influenza virus too,i wonder if all these problems are caused by the swine flu do you know anybody with these symptoms that has been checked for swine influenza with a 100% accurate test?from what ive read up its a blood test that is the only accurate way of knowing with the swab test bieng not that accurate,if anyone knows where i can get tested for the influenza virus in the uk let me know and ill gladly get it done,hope those affected get well soon its a never ending nightmare thanks.daveyboy.

  137. @pnd i also have severe sleeping disturbance and my lungs feel sore and restricted all the time.

    REPLY: This virus causes a chronic fatigue syndrome-type disease, and insomnia is very common in CFS. One supplement that may help is 3 to 6 mg of melatonin before bed. You can buy melatonin online. Melatonin is often used by people with CFS. Melatonin is your body’s own sleep hormone; but this viral infection / CFS creates a hormonal imbalance, so you may not be producing sufficient melatonin at night.

    – Hip

  138. I have been watching other peoples progress on HART but it does not seem to be working for most that Ihave read about they are rethinking the XMRV virus because it does not multiply or mutate like HIV or live in the same places (in the blood) I am just going to hold off until they have a better understanding of this virus

  139. Hudson

    Some people in china do take the HIV anti-virals, but it is not long until they do not work at all. It is quite weird that most find Lamivudine works really well. So there is a chance that this virus has sth to do with HBV. Besides, the ways this virus spead are so similar to HBV. I guess it is possible that this virus is a variation of HBV.

    REPLY: That is very interesting that you say the reverse transcriptase inhibitor drug lamivudine, usually used for HIV and hepatitis B, works really well for the virus in China.

    As you say, these may indicate that the virus in China is related to hepatitis B. I know that some people find they have weakened livers after catching this virus, indicated by a sudden drop in alcohol tolerance and increase hangover.

    Lamivudine does NOT act against the retrovirus XMRV, which is found in many chronic fatigue syndrome patients and is present in 3.7% of the population.

    But there may be several other possible explanations why lamivudine is helpful.

    – Hip

  140. Plus, most people’s ALT is abnormal as well. But HBV test is always negative.

    REPLY: Alanine transaminase (ALT) is raised when there is liver damage, such as damage cause by an infection. So this raised ALT may indicate that the virus does infect the liver.

    – Hip

  141. This virus sucks. At times I am so helpless and depressed. My life is insecured and meaningless the moment I got it. This really hurts mentally so much.

    Reply: I know exactly what your are talking about, Yc. This meaninglessness comes from the anhedonia that this virus creates. Anhedonia is a condition where you lose the ability to feel pleasure, joy or happiness in the normal activities of life. You find that all the things that you once enjoyed doing – the things that gave purpose or meaning in your life – now become dull or unimportant. This also applies to your sex drive. You also find that you do not enjoy socializing or making friends as you used to.

    This is anhedonia. It is linked to low dopamine levels in the brain, no doubt caused by this virus.

    There are some suggestions on the Treatments Page of this blog on how to deal with anhedonia and depression. I found that the drug imipramine can help treat the anhedonia and depression created by the virus. I also recommend that everyone take some of the anti-inflammatories listed on the Treatments Page, as these can improve you mental state.

    But as you say, Yc, this virus really sucks. We really want a cure, rather than having to use palliative treatments to lessen its horrible symptoms.

    – Hip

  142. Yc:

    By the way, how are people in China getting hold of lamivudine? Are they getting it by a doctor’s prescription, or are they buying it themselves? I might try this drug.

  143. Hip, I tried Dr. Chia’s Equilibrant for 2 weeks and I didn’t get any results

    REPLY: Other people on this blog have tried oxymatrine / Equilibrant and also did not get results. Though it is normally recommended to take oxymatrine for at least 6 weeks for a full test. In any case, Dr Chia found oxymatrine only helps about 40% of CFS patients that try it (and only in around 25% of CFS patients does oxymatrine work pretty well).

    If you want to experience with more herbs, this is the list of antiviral supplements I compiled:

    Natural Treatments for Enterovirus:

    The following supplements have broad (but mild) anti-enterovirus effects: oxymatrine, astragalus, quercetin, neem, bael fruit (Aegle marmelos Correa), garlic, and selenium. Supplements that work for specific enterovirus species include: ursolic acid (for coxsackievirus B1), black soybean extract (for coxsackievirus B1), Bupleurum kaoi (for coxsackievirus B1), curcumin (for coxsackievirus B3), Rhodiola rosea (for coxsackievirus B3), Ardisia chinensis (for coxsackievirus B3), DHEA (for coxsackievirus B4), ECGC green tea extract (for coxsackievirus B6 and enterovirus 71).

    – Hip

  144. does anyone get a lot of neck and shoulder,back pain with this virus?,especially after sleeping,jc i know exactly how you feel i too have lost interest in everything,everything seems pointless,im constantly tired in pain and its always on my mind bieng ill,when will i get better its all i think about,i have sort of got over the anxiety i was getting a little bit but its still there lurking,im going to print the sheets off here and see if i can help myself with some of the reccomendations,i have been put on artesunate and zinc by an enviromental specialist,does anyone know much about the benefits of using artesunate for epstien barr ? and and hsv 1+2? anyway good site you have here and thanks, daveyboy.

  145. hip thanks for the reply,i will try the melatonin,will it be safe to use even though i have sleep apnea too?im in the process of trying to get my sleep apnea sorted out,i have severly struggled with the cpap machine ive had so far but im seeing a different specialist who is trying to help me get my sleeping/breathing sorted out,maybe if i can get to using the cpap that will help me too,my biggest problem is breathing troubles and swelling in my throat/neck,cheers daveyboy.

    REPLY: A quick Google search reveals that people with sleep apnea often find melatonin helpful, but check with your doctor first.

    – Hip

  146. I’m sure that you need a prescription for lamivudine but in China, you can probably get anything on the black market. People can probably get it if they know a doctor. India makes a lot of generic HIV meds isn’t far away. Lamivudine’s patent is just expired so it is available for generic production soon here in the states so I can’t imagine this being an expensive drug.

    Yc, have you considered trying Lamivudine? I read that there’s a dosage for HBV & a higher one for HIV. Which one do people take? How soon do people find out that it no longer works. The scary part is that it mutated to a lamivudine resistant strain. I wonder how long does someone have to be on it, forever like HIV? I’m very interested in trying it too.

  147. daveyboy.. I have had sleep apnea for a little while too.. have you tried sleeping on your side? It did go away for me. As far as this virus goes, symptoms come and go. It’s strange. If it’s not one thing, it’s another.

    In terms of this virus effecting the liver, I think it effects all tissue structures within the body. Just like how it thins the skin. Everything is weaker and nothing heals quickly.

  148. Due to the contagious nature of this virus in my area, I wonder if there is conscious want to not discuss as it could depress the whole area (i.e. ruin tourism and jobs). Mass panic could ruin the economy here. I’m sure if the Chinese CDC are studying it, the US CDC would be well aware of the illness. People would rather let this spread to everyone else first before sounding the alarm because if the alarm got sounded too early people will quarantine a whole region, people need to make money so they don’t do it yet. If that’s not selfish, I don’t know what is. That’s just my guess.

  149. I also have one of the worst cases of sleep apnea it started about 6 months into this. I also suspect that this virus can affect the thyroid gland (i think it has given my hypothyroidism )

  150. hi hudson ,i have had sleep apnea for years and years now,only got diagnosed with it last year after my gf took a video of me sleeping i realised how bad it was,when i showed my then gp the video he laughed about it,i insetsted to be reffered to sleep study where i was diagnosed with obstructive sleep apnea,i always sleep on my side always have done,my syptoms never change much just always seem to get worse and worse,i have noticed the more i sleep the worse it can get too thats probbably why im struggling to get to sleep,any thoughts on the swine flu virus possibly causing these problems?i wouldnt be surprised if they are playing it down now just to keep economy running avoid panic ect,i think i read on the cdc website that it was uknown how the swine influenza virus would affect some individuals,my question is if they are unsure how it would affect some individuals how do they know if you have it or not to me it seems to be possibly the fall out of the swine influenza virus i know at least 4 people who have simmilar symptoms to me that are my friends although they arent as bad as i am they are all unwell to different degrees with simmilar symptoms,thanks daveyboy.

  151. Hello

    I am not sure what the purpose of the comments left here are and if it will help others or help the doctors continue to explore and find answers.

    But after reading the whole page no how CFS can be started by the Chronic Sore Throat and then all the stages and processes that you go through I was taken back. I have been telling people and friends and doctors over and over that this is how everything started and nobody ever took special note to it.

    I am that Person that had a Chronic Sore Throat for 6 months prior to being completely bedridden and then the Pain set in after another few months..

    Then upon testing and testing at least 12 other co infections were found through time including of course EBV but also Lyme disease and the list of Fungal and Viral and Parasitic and Bacteria infections for the next 10 years just added up and added up.

    Every system of my body has been affected and I have been trying every treatment I can find related and though it is hard to find a doctor who can look at the WHOLE picture instead of just this or that part.. It has been a huge challenge to find good medical care.

    When you treat one thing and not the other it seems to be like putting band aids on and it does not treat the whole disease and I feel like I go in circles.

    Please help guide me to more information and possibly more doctors or ways to get help. It has been over a decade since on set and I am doing better but still have a lot to address. As well the ups and downs of this disease are scary since you never seem to know if the infections are really reduced or gone or just taking a vacation and will be back?

    REPLY: Hi Debbie

    Thanks for posting.

    Good doctors that help treat Chronic fatigue syndrome are hard to find. Some CFS doctors and clinics are listed at the bottom of this page.

    But in CFS, you have to be your own doctor most of the time. Frustratingly, most regular primary care doctors do not believe that CFS is a real physical disease, and most have little experience in treating CFS.

    There are lots of great online resources for CFS. My favorite is the PHOENIX RISING forums.

    There are also many useful books on CFS.

    Note that Lyme disease tests can give false positives if not performed properly. See here.

    – Hip

  152. hi debbie are you from the uk?if so there is a hospital in hemmel hempstead,called the breakspeare hospital i went there and despite having ct scan which showed swollen lymph nodes in my neck and other areas and then bieng referred to infectious disease where they found nothing they found ebv herpes simplex 1+2 ,i also have a candida yeast overgrowth problem too and all thats without even bieng checked for bacterial infections its expensive but worth it to find out whats wrong then treat the overall health problems,thats how im trying to get things sorted and im also looking for other options too ill never give up untill i get to the bottom of all my problems and get them sorted out,good luck,daveyboy.

  153. Hip

    As I am not quite familiar with most patients in China, I can not tell you whether this is a doctor’s prescription or their own treatment. However, you can contact Lin Jun(林军), he has lot’s of contacts and professionals. One of the doctors is treating a Chinese patient in US now. I guess he can greatly help you and provide you lot’s of info.

    His email is

    *****@sina.com

    BTW, by his effort, the virus in China was reported by several media and he is trying to find a way now as well.

    REPLY: Many thanks, Yc, I will contact Lin Jun at the email you have provided (I have removed his email above, otherwise it may be picked up by junk mail spammers).

    – Hip

  154. Daveyboy, I did have sleep apnea for a little while. I was really worried and woke up no breathing. It’s scary. I found that when I slept on my back is when I would get it the most. Have you tried, those bandages that you put on your nose to expand breathing tubes?

    Yc, does that doctor take English or will a translator be needed?

  155. hudson,i never realy was woke up by it,sleep apnea generally doesnt fully wake you,it wakes your mind to start breathing again then you nod back off and usually remember nothing of it,it sounds as though you could have had severe swelling in your throat caused you to actually stop breathing in your sleep?i cant remember a time i ever woke up conciously noticing these breathing episodes myself.

  156. Daveyboy, everytime I awoken because I stopped breathing. It’s even more scary that you don’t wake up while not breathing. I don’t think I had severe swelling but anxiety at the time that also gave me bad dreams. For me, it has gone away for the most part but I still have other symptoms that go this virus that remain

  157. hudson

    This doctor is a Chinese American, I guess she can speak English. I do not have any ways to contact that doctor, if you wanna see her, you can email Lin Jun. Anyway, I hope we can soon find a way to cure or mostly relieve the symptoms. I will try my best as well. If necessary, I will sacrifice my life to find the cure. God bless us!!!

  158. Hip

    Thank you for your efforts, I do believe when more people work together, there will be a greater opportunity to find the cure. I will try my best as well.

  159. you know im still thinking swine flu i always did,i did get tamiflu in the early stages of my illness and it was the only thing that helped a few days after the course of this my symptoms started to return,of course my gp said it was a coincidence so annoying,i had the build up of brown black on my teeth at the back of them another late symptom,a good tip is to go see a good oral hygenist and get your teeth propperly cleaned,i did and my teeth are nice and white once again,i think the problem with this virus is the way it runs you down and depresses you,your hygene standards slowly decline as your too exhausted and it all has a knock on effect.daveyboy.

  160. hudson,i had this sort of thing too,did you like sort of jerk out of your sleep?the sleep apnea for me is a seperate issue as ive had it many years,if you read up on sleep apnea you will see sleep apnea sufferers don not even know they have this condition apart from the tiredness and sometimes nodding off in the day time, i think what you describing is the anxiety i had that and everytime i noded off i jerked awake out of my sleep and had pain in my chest it was that bad i rang an ambulance,but as usual i was fobbed off at the hospital i dont know whats going on with the medical proffesion but to me something just isnt right to be leaving people realy ill like this. daveyboy.

  161. daveyboy Most people here have been sick way longer then the swine flue has been around, therefor I can say with confidence that I have a better chance of catching a unicorn then this being swine flue

  162. floridifam,right, in my case im wondering if it may be then,also how long do you think this throat virus has been around?and has anyone been tested and actually found anything at all got any sort of diagnosis?

  163. Yea I was diagnosed CFS the only virus they found so far is EBV but my titers are off the charts and I have candida issues CFS has been around since the early 80’s

    REPLY: Floridafam, many of your symptoms may be caused or worsened this EBV co-infection. There are a lot of good ways to treat EBV, mentioned in much earlier comments, including drug, dietary and herbal treatment, that all work synergistically together to eliminate EBV. These may be very valuable in your case. Try them.

    – Hip

  164. floridifam,yeah i think i may have cfs too, i too have candida problems,probably didnt help me the fact ive had sleep apnea for many years at least half of my life and was only diagnosed last year,i had been fobbed off and messed around by the gp,s ect all that time,the problems with the doctors specialists ect is that they never take anything seriously,its not on,i wonder whats the point in having a gp who will just throw antibiotics at you,probabbly making things worse then reffering you to specialists who find nothing,then they change their tactics,start ignoring you,ive even had one doctor say i had hypachondrial tendencies lol ive never been anything like hypachondrial in my life,its pointless to even go to my gp or any hospital near here now they are all the same.daveyboy.

  165. yea well every Dr I went to the first thing they said was oh oral thrush you need a HIV test (how do you think my anxiety was then LOL) so I would take yet another HIV test and they would run for every thing else they could think of (EBV, CMV, Herpes CBC with differential, TSH, ESR , immunoglobins CD counts ect) then when they could not figure it out it was all in my head. I took about 13 elisa antibody HIV 1/2 tests and 3 PCR RNA tests plus 2 NATT tests with P24 antigens out to 3 years the only things that ever showed was high EBV low vitamin D slightly elevated white blood count (around 11) in the first six months i also had very high calcium levels and my white cells are not funtioning properly (chronic candida or chronic mucocutaneous candida,is the proper term) and one specialist said to my face that that condition is almost only seen in aids patients (once again good for my anxiety) yet I am crazy and i guess I can change blood work with my mind (bullshit) I have found that if they can not figure it out you are crazy or a hypochondriac. It took a ID DR to finally say it was chronic EBV witch is basically CFS

    REPLY: Floridafam, I have found the earlier comment about curing EBV:

    Assuming symptoms are caused by chronic Epstein-Barr virus infection, try the following to quell the infection: an alkalizing diet plus valacyclovir (Valtrex) an antiviral drug for EBV. An alkalizing diet (or raw food diet) can be VERY effective against chronic EBV. I would try this first. Search Google for more info on alkalizing/raw food diets. The following supplements also have a mild anti-EBV effect: lysine, red marine algae, cayaponia tayuya root, pau d’arco herb, beetroot extract (Beta vulgaris), olive leaf extract, lemon balm (Melissa officinalis).

    The alkalizing / raw food diet is a big change of lifestyle, but if this cures, then it is worth it.

    Do you also know that cutting out sugar as much as possible is a good way to treat candida.

    – Hip

  166. floridafam,wow you had so many tests done i was reffered to infectious disease where they did a few tests not as many as that though,its rediculous how even though we think of the modern technology of today they just turn a blind eye to this condition,i think i know what sparked my problems off,i was weight training and felt a bit short of breath but continued to try get my breathing better,then one day i went and had a big sort of attack,got short of breath and felt my heart pounding,this realy un nerved me i went to the hospital where they said it was a panic attack,following that i stayed in bed hardly moving for a good week,then i started getting up little bit at a time but never got better only worse i slowly got used to bieng this way but continued to go to my gp and a and e dept regurlarly trying to get help,it wasnt untill i went to the breakspeare hospital that they noticed the high ebv and herpes simplex 1+2 levels,the doctor there said herpes is glandular fever,the thing that worries me about ebv is its link to lymphoma and as i have swollen glands i was concerned about it but had a ct scan which showed swollen lymph nodes but not that swollen id also had a fine needle aspiration on a lymph node in my neck that is quite swollen,it came back non conclusive,from what ive read they often do so im very anxious as the changes in my body are very noticable to me,but this attitude that the gps and specialist ect have is by no means reasurring to me whatso ever,i hope to get better soon and hope you guys do too take care daveyboy.

    REPLY: Daveyboy, why don’t you try the above treatment for EBV also? You cannot just rely on overworked doctors to solve your problems. Take some responsibility for your situation; read up on these treatments, and try them.

    – Hip

  167. floridafam,i also have oral thrush and have been given nystatin on numerous occasions and it did nothing,i was never told of the link to hiv but have been tested for it at least once that i know of,ive read a little bit on oral thrush,it happens with like you said hiv patients,immuno compromised,and people with cancer too,thats the info i could gather about it,you ever mentioned anything youve researched on the internet to your gp?i did lol what a reaction i got,everything you see on the internet is rubbish and missinformation ,i think im wise enough and old enough to know that this is not the case,i think the gps dont like it because theres a mindfield of information they clearly dont want you to know.daveyboy.

  168. I fit in th CFS definition more so then the chronic EBV (most Drs will throw all these conditions together) I have noticed I seem to have the thyroid problems seen in CFS although my energy levels seem to be slowly returning over the years (but I am getting more and more opportunistic type infections) I have heard that about %20 of cfs patients can recover about to %80 I am hoping that is me

  169. Also my wife and kids are affected so I would doubt very much it is soly EBV

    REPLY: Agreed, it is unlikely to be solely EBV; it is probably a reactivation of EBV from catching another virus like one described on this site, which is immuo-suppresive. But even so, EBV reactivation can cause a hell of a lot of misery. I know one person on this site, a while back now, Cathy, who had very high EBV titers, and had horrendous misery and depression and anxiety symptoms from it. You can find her posts in earlier comments. After suffering a long time, she came across a special diet (by Sherry Brescia) that cured this EBV reactivation, and all her symptoms disappeared. I think this diet she used works via alkalization.

    By the way, the lazy (or more simple) approach to alkalization is to take half a teaspoon of sodium bicarbonate (from the supermarket) each day, in-between meals.

    – Hip

  170. floridafam found a little snippet of info for you, Mononucleosis spreads by contact with moisture from the mouth and throat of a person who is infected with the virus. Kissing, sharing drinking glasses, eating utensils, and toothbrushes, or touching anything that has been near the mouth of an infected person, may result in transmission of the disease.i think ebv paves the way for co infection of many other parasites,bacteria and other viruses too.daveyboy.

  171. Yes I know this and like %98 of the world population have it, and it causes nasal carcinoma in the far east. I had it in high school it is mono (the kissing disease) but your body will keep it in check otherwise you will get active chronic EBV (witch kills you in like ten years) but mostly children get that, and it is rare. What I have is a reactivation of a virus that my body controlled until I was 35. This usually happens when some other pathogen is introduced to the immune system.It is a sign of autoimmune disease and viral diseases like HIV .

  172. floridafam,does that mean if you have chronic ebv infection you would eventualy die no matter what you tried to do about it?

  173. I am saying that is the most likely outcome for somone with a “active chronic epstein bar” infection, but like I said it is real rare and mostly children get it not adults

  174. Wow just reading up to be sure. Turns out it can effect the elderly also and it has been on the rise to. I am seeing them say up to there 30s now.

  175. floridafam,well i must be very unlucky because it seems the specialist i seen does think i have a chronic ebv infection,after nearly 2 years of bieng messed around by the nhs my health has declined so much god knows whats gonna happen,youd think if someone had had a infection of ebv and they knew they would keep an eye out for cancers caused by this virus,its utterly unbelivable the oh no youl be ok mentality,what planet are these doctors ect on?and the worse thing about it is they try to tell you your mad,and your the one who is at fault,if you happen to be in the wrong place at the wrong time and be infected by these awfull viruses how does that make it your fault?i bet if you say had a ebv cancer,they wouldnt even mention the ebv theyd tell you its cancer and pump you full of chemo,give you radiotherapy,which most people dont even survive,and thats it ive seen it first hand when my mum died of throat cancer when shed had radiothrepy she nearly died and they had to insert a tracheostomy,then they decided nothing more could be done,with my mum though she smoked a lot,usually around 80 cigs a day,they said the didnt know if the smoking had even caused the cancer,shouldnt they have looked at what caused it and tried to correct it too?to be honest i often wonder if they even have a clue and get a feeling of them just fobbing people off no wonder they dont like the internet because we can learn the things they should allready know,but it doesnt look as though they do much research to me.daveyboy.

  176. daveyboy I think the ods are if you have a EBV infection it is a reactivated infection I would doubt it will kill you but it can make you miserable. I would find a good DR who has treated it before. There are anti viruls available now I even heard there is a new one that is pretty good I am waiting for disability so I can get medicade (I have no money left for DR’s)

  177. thanks hip,i will try the tumeric and passion flower,i am allready on artesunte which i take 4 times daily,did you see the part about artesunate too?it seems the specialist im seeing at the breakspeare does kind of have a clue what hes doing ill combine the passion flower and tumeric with the artesunate also then,i wonder if theres anything else i can do also?

  178. floridafam,do you know or can you find out what this anti viral is called for me would be much appreciated thanks.daveyboy.

  179. floridafam,also i hope you succeed in getting disabilty i get it here in the uk i have bad legs no knee joint in my left leg it is fused,and my right hip ive had surgery to straighten it,ive had surgery on my legs 5 times in total,4 times on my left and once on my right,are you from the US?

  180. Yes US Florida to be exact well clearwater to be precise. It is hard to get disability in the US and if I do it is only like $500 bucks a n dont know how I could live on that but better then nothing and I will be insured again

  181. floridafam,well better than nothing at all,i get a car on mine here,i realy would be lost without it id be able to go nowhere,did you manage to find out what that new antiviral for ebv was?or even if you could send me a link to the info would be much appreciated thanks.daveyboy.

  182. some patients contacted John Chia and we now believe the virus is quite possible to be a kind of interovirus. Some American patients recommend Oxymatrine. This is another meicine to cure HBV. I guess this disease may have sth to do with HBV.

  183. BTW The uni promised once they got the blood sample, they will help us and test it. The blood sample is not possible to be sent to US because of the fucking Chinese government, this opportunity is very important for all of us to know the truth. Plz do sth if you can.

  184. Yc, Thank you for this info.. Fortunately it’s close to me so I will attempt to contact them next week.. I feel like there may be hope. The Chinese government is a bunch of idiots. If I was there, I would infect as many of those government officials as much as I can. They don’t want the blood samples go be tested elsewhere but allow sick people who can come over in a plane flight. I’m sure that this area is the first area in the U.S. to get this virus as there are many Asians and Chinese here. It doesn’t suprise me.

  185. hudson

    Thank you for your efforts. If China’s CDC did somthing when the disease was first found in 2002, things would not be like this today. I really wish we can find the cure because we are so innocent. Recently I feel so depressed and sad. Life was really different last year and before that. However, everything is changed by this nasty virus. I sincerely wish you and all of us a good luck on this issue. Bless us PLEASE!

  186. There are NO any PROVEN data that CFS has a viral etiology.

    Absolutely the same way i can for example say that the cause if acne. And researchers will find acne on face or on ass or elswere almost at anyone CFS patient.

    But this doesn’t mean that acne is cause of CFS.

    Funny people. )

    REPLY: You are merely teaching the rudiments of logic, namely that association does not imply causation. But like many dilettantes to the area of CFS, you are only looking at one part of the data. You would make a bad scientist, and a bad detective for that matter.

    In CFS there is all-round evidence highly suggestive that microbes play the main casual role in most subsets of CFS, plus plausible mechanisms of microbial etiology (I assume your are familiar with the basics of Bayesian inference, where you need to factor in a likelihood of occurrence index; if you are not familiar with Bayesian stats, you ought to read about it before you engage in this type of discussion).

    And you certainly should make an effort to educate yourself in the limitations of Koch’s postulates for chronic diseases.

    Anyway, you are wrong about there being no proof for viral etiologies of CFS: hepatitis C virus is know to cause CFS symptoms; only for some strange reason, we do not refer to this as CFS, but just call it hepatitis C infection. In other words, once the causal agent is identified, we no longer call it CFS. But to all intents and purposes, hep C can be considered a viral cause of a CFS type disease.

    Furthermore, there is complete proof that the bacteria Chlamydia pneumoniae and Coxiella burnetii can cause CFS symptoms. But since these bacteria are treatable with antibiotics, we no longer have cases of CFS caused by such bacteria (or only vary rarely, if it has gone undiagnosed for a while).

    – Hip

  187. Kozak SO FAR you are right but I would say that finding a virus in more then %90 of people with CFS is very telling to say the least and that is how many CFS patients have tested pos for XMRV smart guy

  188. Hell then technically HIV causes CFS symptoms also so there is another viral link as Hip was pointing out . It is just called HIV infection so for all intents and purposes, hiv could also be considered a viral cause of a CFS disease.

  189. floridafam,thanks for that,im glad you may be finally getting somewhere with the doctor who has offered the blood testing,these things should be done anyway,im disgusted with the medical profession in general they seem to only ever want to fob people off,unfotunately over here they are pretty well guarded with the complaints procedure,these people the so called medical proffesion should be accounted for there mistakes,i mean ok everyone makes mistakes but fobbing people off and not caring at all is no mistake in my eyes its downright evil,people are suffering and they dont even bat an eyelid if you think of it you are just one person in the thousands of people they see but lets say the next person is just one and the next and the next then you have thousands of people all bieng treated the same way its not on something needs to be done about the state of healthcare to stop people suffering im sure if theyd helped me before this spiralled out of control i wouldnt be in this state of health right now.daveyboy.

  190. floridafam,how would i go about getting treatment with vidarabine and foscarnet,would i need to have it prescribed by my gp?could i buy it myself?,and if so do you know where i could get it from?thanks,daveyboy.

  191. @Kozak

    Do you know that you are part of the problem?

    You remind me of the ancients that didn’t know about … ANYTHING.

    – You create arguments that are based on YOUR BELIEFS, not fact.

    – Society used to believe that the EARTH was the center of our galaxy.

    – Medical Doctors used to believe that nothing NEW was EVER discovered.

    Closed minds are great for holding back development.

    Thank you for nothing.

  192. @Hip

    Thanks for the link, but i know the modern limitations of Koch’s postulates and that trad. Koch’s postulates are inadequate.

    ————–

    @floridafam

    I just was indignant about the way conclusions was made for XMRV and about message to CDC.

    (btw HIV like virus is VERY questioable for now).

    And pls don’t forget that some part of CFS people really have some another undiagnosed troubles, which can lead CFS\FUE-like condition. But this is is not CFS\FUE.

    Firstly it would be better to have an exact definition for CFU.

    As for i prefer to name it not CFS, but FUE.

    ————–

    @Asklepius

    > Do you know that you are part of the problem?

    sure.

    >You remind me of the ancients that didn’t know about …

    >ANYTHING.

    I’m smiling …just smiling :)

    Asklepius, the main two biggest troubles of medicine (incl. modern):

    a)Data interpretation;

    b)Сonfusing (swap) the causes and effects (esp. in novadays)

  193. TO: Kozak

    I can understand the indignation; but sadly the world of CFS in not just one of pure science. It has been contaminated with corporate politics. Perhaps you know nothing of these political problems of this disease? In which case, you miss how important this XMRV finding was to the CFS field, and to the patients, even if not yet proven. If and when it is proven, everyone hopes that this truth will overcome the bad politics.

    CFS patients by and large are a group of people that believe that biochemical research is the way forward with this disease, not the psychosomatic model touted by the CDC.

  194. Yeah and sure, confusion about causes and effects is a huge problem, and particularly in CFS, where there are myriad abnormalities in the body. Working out which ones are more upstream in the sequence of cause and effect, and which are more downstream, really requires genius.

    SO CALLING ALL GENIUSES – please come into this field, and prove your mettle by figuring out and, ultimately curing, chronic fatigue syndrome!

  195. @Hip, Thanks for your reply on the insomnia. Can this disease be detcted through blood tests? If it is, what are the unusual bit? thanks.

    REPLY: Regarding chronic fatigue syndrome in general: there are no official tests for CFS, and CFS will not usually be picked up in regular blood tests. But there are many metabolic abnormalities in CFS, such find low molecular weight RNase, high CD26, low natural killer cell function, high oxidative stress, and many others. But these are generally specialist tests, only performed at specialist CFS clinics.

    As for this particular virus, low CD4 cells may sometimes be found, even in a regular blood test.

    – Hip

  196. @Hip, Thanks for your quick reply.

    @Yc, where did you get this infection in Australia? As I am from Australia and what are your particular symptoms?

  197. hip,could this virus cause swelling of the lymph nodes,ive had swollen lymph nodes now for at least 13 months,today after id eaten got the worst bloated feeling and pain in my stomach ive ever had,and also i have sorness in my spine,daveyboy.

  198. Kozak Well actually if you want to nit pick I would remind you that they never technically have proven that HIV is causative of AIDS (just look into AIDS denialist ) but I would not stop taking the antivirals because you did not believe it. (if I had it anyway)

  199. Daveyboy, I have a bout of long bloating with this virus. For a while when it started, I had stomach problems and chronic sore throat at the same time. The bloat would not resolve and I couldn’t even go to work without feeling uncomfortable all the time. I felt like I had cancer at the time. I had all sorts of tests (x-ray, ultrasound, endoscopy, & finally CT scan). It ran up my bills. I tried everything from taking enzymes, anti-biotics, & probiotics. Nothing helped until the doctor said it’s dyspepsia. He recommended iberogast. Try it. I really recommend it. My stomach got better in about 3 weeks after trying it. This was after having a bad stomach for 6 months. I think this is all related to the virus I have as all tissues are thinned out including stomach tissues and my skin. I can’t really drink alcohol anymore as one pint made my stomach really uncomfortable last week and I used to drink a lot too. Good luck.

  200. Daveyboy, do your lymph nodes hurt or are they just swollen?

    Kozak, do you believe in the illness that I have? I can prove it to you if you would be willing to meet face to face. If you hang out with me for a couple of hours, you will get it too. I have yet to get any takers for my offer.

  201. Kozak, if you really don’t believe that a virus maybe responsible for CFS or AIDS, then contract it to find out. Otherwise, don’t be quick to judge or at least say you don’t know.

  202. @Hip

    Looks like that you undestand me in wrong way.

    I don’t accept the psychosomatic model of CFS.

    I don’t even know for what psihotrapevts are needed.

    300 years ago there were priests in confessionals…now you have psihotrapevts instead.

    I believe that CFS has a real infectious cause.

    @daveboy

    If you have a swollen lymph nodes -make a biopsy\puncture of one and you may will find why they are swollen.

    @hudson

    >Kozak, do you believe in the illness that I have?

    Sure, i believe.

    But reading all of you i don’t undestand the isteria about all these unproved viral models.

    As for me -i have already done such a huge amount of screening, tests, viyualiyation research(CT, MRI, etc), punctures and many more.

    And here most people just talkig about how terrible one or another virus could be…. not taking into account that all them really could not related at all.

    How much of you really excluded (99%) for example tuberculosis of all locations?

    That is what i don’t undestand.

  203. Kozak TB you say oh um TESTED FOR IT! look dude CFS is a diagnosis of exclusion if you think I am a idiot who just thinks its this or that you are wrong I as most people on here have tested every possibility and are left with CFS (could some be wrong sure we could) When you hear trotting do you expect to see zebras? No you expect horses just like I had every symptom of a viral attack of some kind so I suspect a virus. Since I have tested out for every known virus then I do pin my hopes on the newly discovered virus only because it would make sense. Yes I could be wrong and I know that but I am hopeful for a answer

  204. @ floridafam

    >Kozak TB you say oh um TESTED FOR IT!

    ok. In what way you have checked TB?

    >Yes I could be wrong and I know that but I am hopeful for a

    >answer.

    I be very glade if you will have the answer.

    I’m just trying to make people think wider -not only about unproved viruses.

    But it looks like that my try is failing.

  205. @floridafam

    > skin test like everyone else

    Aha-ha-ha ))) That is i’ve expected.

    I have no more questions to you.

  206. Kozak thats your big contribution TB? You are useless thanks for nothing take your idiotic ramblings elsewhere you have no clue what is going on obviously

  207. for all those who don’t know the test for TB is a skin test and is quite reliable (like %99 sensitivity) dont listen to this idiot kozak he has no clue what he is talking about

  208. @floridafam

    The problem is not in TB… probably..

    There are no any test available in world which can exclude tbc for sure. To exlude tb at app. 99% for all locations there are a lot of test and procedures needed. (who need -could find in the web if will want much enought).

    TB was used just as an example to show you the wrong methodology and how butterhead you ,floridafam, are.

    Good luck!

  209. @floridafam

    i’m not turkish. My english isn’t perfect…german and polish too. But nevertheless i speak 5 languages … some very well ..some not.

    And you cool brave “not turkish” man with “bighead” called floridafam …how much languages do you speak well enought?

    damn….

  210. The only one that matters ,and I do have a Big American head (its on the end of my big American penis LOL) I see you choose a Turkish mountain for your screen name so I thought you might have been, but I see all I need is that you are arrogant and useless. You come here and talk shit but offer nothing (maybe you should run for politics) as for your 5 languages I sure hope you are not counting English (because your English suck ass) Anyway hope you do well in what ever third world country you live BYE BYE

  211. @floridafam

    >and I do have a Big American head (its on the end of my big >American penis

    BRAVO!!!!

    Aha-ha-ha )))

    You r so predictable….

    >because your English suck ass

    Yes, sure i’m suck in front of such a smarty cool AMERICAn man like “floridafam”!

    :D :D :D :D

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