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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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XMRV Link Gives False Hope for CFS

Discussion in 'XMRV Testing, Treatment and Transmission' started by Fejal, Sep 11, 2010.

  1. FunkOdyssey

    FunkOdyssey Senior Member

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    I guess there's no way the Marshall Protocol's favorite antibiotic, minocycline, could benefit someone with a retroviral infection....

     
  2. free at last

    free at last Senior Member

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    Lol it seems antibiotics can then

    The one thing that strikes me about most discussions and insights about this illness ( including my own experiances ) is the contradicting nature of evidence from patient to patient. as i recovered a lot of my health ( but still get symptoms ) and i neither took prolonged use of antibiotics anti virals avoided mold ect. All i took was evening primrose vit c. multi vits. magnesium, calcium cod liver oil. And not always the whole lot, just when i could get them. Restoring sleep patterns with the drowsy knockout effect of amitriptylene helped stop the deteriation.

    But didnt stop the illness or symptoms. Only years of rest, inactivety, good sleep. the supplements mentioned. Lots of raw vege ( many many different types ) raw galic. seemed to help a very slow but progressive calming of symptoms. Im sure it was Dr Peterson who said ( might be wrong ) apologies no link. That its possible for some that the immune system stops reacting to the xmrv virus, producing less symptomatic flares. But the long term effects of the immune system doing this are uncertain.

    Maybe this explains why there are healthy xmrv populations. Maybe if the immune system does not see the virus as a threat and doesnt continually keep mounting intermitent attacks. Then symptoms are just not present. in my case i belive its possible i had xmrv many years before i got ill. But through a series of many many infections, maybe both viral and bacterial, My immune system started to attack xmrv, and a cycle of repeated immune responses, with relative inactivety of the immune system at times of less symptom periods. really caused a type of off and on immune type of disfunction to occur for many years ( about 16 now )
    I have no real understanding of how these things work, and if im way off base, apologies to all for trying to input here. But these ideas seem to make sense to me personally.

    Maybe over time, without even trying particulaly, just the things mentioned i was doing. my immune system learned to re train itself to a time when ( like the healthy xmrv people ) symptoms are not on a continual basis anymore. I have just had a very long period lasting 3 or 4 months that symptoms were hardly happening at all. But recently out of the blue for no apparent reason. they came back. And its been like that now for years. It seems very unpredictable, for how long good periods will last, or how often the worse periods will come again.

    I look for triggers, and sometimes it seems excercise can be a trigger, but not always. I feel often there can be many different types of triggers. and blame everything. other times i think, the fine line is so delicate, it really will just keep coming back no matter what i do, or do not do. And i think this will be true for most here.

    But for sure, compared to the past CFS/ME symptoms ( maybe xmrv symptoms ) have shown a very gradual improvement in both frequency of attacks, and severity of symptoms themsleves. Anything that can effect the chemical and immune functions of the body seem to have a potential to upset this very fine delicate balancing act.of symptom, or symptomless periods of time.

    Alcohol even very small amounts can. Pot in my experiance is very very bad, and mild continual use produces more frequent and of a higher strength symptom flare up, ( but others have found it helps ? ) so much so, i no longer touch it. I belive it can produce a over active immune system in some, and possibly a underactive immune system in others, possibly explainling the contradiction from pateint to patient here.

    I apologoze i have no links, and is only a personal experiance, and somewhat guesswork. those that choose to ignore guesswork, i fully understand.

    I dont belive any one theory fits all for this disease, is the answer. Not bacteria, mold. viruses chemicals ect. I think its all relevent. But as for example, i didnt do any particular mold avoidence or antibiotic treatment, antiviral drugs ect. yet i still got profound improvement of my health over the years. doing what i described earlier.

    Some may say mold is at the top of there list, or bacteria treatment. But i dont think that fits my personal experiance, even if it fits other peoples. who knows maybe one day we will find a reason for this particular discrepency But i dont believe im the only one. And i do belive mold is bad, and cause flare ups. but to say its at the top of the list
    just doesnt feel right, and doesnt really seem to fit my particular experiance, even if it does others. Same for the MP bacteria theory. relevent yes. the answer for us all probably not.

    But to say i dont fit the correct diagnosis based on that experiance is others guesswork, and i could lay the same question to them. All i will say is, i was diagnosed CFS by good ole Wessley, and another psychiatrist. A consultant at greenwich hospital, and proff Findley harold wood hospital both agreed ME/CFS i fitted many of the symptoms canadian concensus criteria. so i havent a clue, But watch out for personal beliefs, as they may only fit a subset, and we are right back at you never had ME in the first place mentality. Wessley isnt the only one to doubt patient testimony, based on personal experiance or beliefs i dont belive. If you ask me my fav theory for a lot of this, based on what ive learned this last year, and my expriances. I will say xmrv is at the top of the list. with all the other stuff co factors but still relevent hand in hand with that little beauty. Time will tell i suppose. My heart goes out to all of you that struggle with this complex and conradictory disease. Watching us all go round and round, looking for a answer and a future cure. It just sucks. But we must do it.
     
  3. guest

    guest Guest

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    FunkOdyssey: Thanks for the abstracts.

    EDIT: I had some translate issues.
     
  4. FunkOdyssey

    FunkOdyssey Senior Member

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    Actually my point was that it might be a very good idea, and were you to take a drug like minocycline, improvement in your condition would NOT necessarily mean that you had a bacterial infection. These drugs do other things, helpful things, totally unrelated to antibacterial activity. That's why it can be used as an adjunct treatment in HIV.
     
  5. Jemal

    Jemal Senior Member

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    I took doxycycline, an antibiotic which falls in the same group as minocycline, and I definitely noted improvement. Some improvement seems to be lasting, even though I am not taking doxycycline anymore.

    The big question is though: is the immune system doing good by attacking XMRV? This conflict seems to cause a lot of symptoms. If XMRV doesn't cause symptoms of its own, then the immune reaction is pretty much unwanted. But if XMRV causes things like cancer, the immune response might be a blessing and then you might not want to stop this response.
     
  6. xrayspex

    xrayspex Senior Member

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    u.s.a.
    jemal thats interesting, one of the factors right before my big demise 20ish years ago, was I was taking erythomyocin for skin stuff and it was really hurting my gut, and a couple other meds that summer seemed to create a bad cocktail where things went from bad to worse.....but I have regretted that erythomyocin, they used to hand it out like candy and I was really apparently healthy and fit before that but in retrospect I think I probly already had xmrv dormant
     

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