Has anybody started following Dr. Mikovits's suggestions RE Therapy?

Discussion in 'Fibromyalgia Main Forum' started by sunnyslumber, Mar 1, 2010.

  1. sunnyslumber

    sunnyslumber New Member

    Hi All,

    In the Q & A portion of her presentation (Jan 22, you can find it on youtube or on this site) she was asked what things patients could do to help NOW. Her responses were along these lines:

    *Suggests non-steriodial anti-inflammatories may help by reducing inflammation.
    *Suggests taking a supplement which is proven to upregulate Natural Killer (NK) Cell function.
    *Glutathione & N-Acetylcysteine & Anti-oxidants in general.
    *Emphasized strongly the importance of finding Quality "supplements" as those which not could potentially harm (*MY COMMENT* this is where patient collaboration could be helpful to see which over the years *have* been the most Quality)
    * Thought getting off "the Pill" could potentially help women since progesterone upregulates XMRV in Laboratory

    Okay so most of us take one, two, or a quite larger number of supplements. Has anyone tried to modulate their supplements to be in more line with her above suggestions? Have the results been pretty much the same, better or worse?

    In any case, I think for those of us who are convinced that most CFS involves an XMRV infection ...

    (after all two of the negative studies were done by the Pyschiatric Lobby in the UK and Netherlands... the same people who brought us such great one-liners as:
    "Of course CFS/ME is real, it is really in their heads!")

    ... I think it would be a great idea to remodulate our supplement intake to take into consideration her suggestions in the future if no-one has tried already! There's every reason to believe it would be helpful.

    Take Care, better health to all, and respond away! =)

    [This Message was Edited on 03/01/2010]
  2. ladybugmandy

    ladybugmandy Member

    i dont understand why people who are really sick and have already tested positive for XMRV, arent taking antiretrovirals. personally, i would treat a retrovirus asap - if you can find a good infectious disease doctor to cooperate, that is - and if you can afford it.
  3. sunnyslumber

    sunnyslumber New Member

    Many, like me, can't afford the test. Even then its not really known which anti-retrovirals will be effective, except maybe AZT (very toxic). There may be more known but as of about a month ago that's all I could find.
  4. ladybugmandy

    ladybugmandy Member

    sunny...in a while, the serology (antibody) test will be out and i hope it will not be too expensive. hope insurance will start paying for the test too.

    unlike HIV, azt is probably needed at much small doses for XMRV. it wouldn't be too toxic at those doses i am told.

    i wouldn't take only azt though; i would take at least 2 drugs to lessen the chance of resistance. i think raltegravir (isentress) is another one that works against XMRV but is very expensive. no idea how to obtain it for CFS.

  5. aftermath

    aftermath New Member

    I just bought NAC, but I have taken it before without substantial result.

    With the tenuous nature of the connection to ME/CFS, I would not touch anti-retrovirals at this point. They're simply way too toxic.

    I'm really hoping that subsequent US based studies validate the Science/WPI findings. Until then, however, I'm going to wait on the sidelines with regard to XMRV--as suggested by Drs. Bell and Klimas.