My latest theory, pls read & comment

Discussion in 'Fibromyalgia Main Forum' started by JaciBart, Jul 15, 2003.

  1. JaciBart

    JaciBart Member

    I have often wondered why are we not treated with hiv drugs??? The ones that will boost the immune system.

    And if they can make ms & lupus & parkinsons go into remission with certain drugs why are we not trying those same drugs??? We have a lot of the same exact symptons of the other diseases, about 90% of them, all mixed together so therefor our little stupid "all in our head" fibro & cfs are every bit as bad, painful, debilitating as the others but we are looked at as lazy.

    We have worse than ms, lupus, parkinsons, myasthenia, etc cuz we have them all.

    Pretty darn simple really.

    Jaci
  2. ohmyaching

    ohmyaching New Member

    I did a post entitled Autoimmune and FM you might want to read. One of the more interesting aspects of yeast/candida is that it can result in the creation of antibodies to ovary and certain T-helper cells. The mention of T-helper cells struck me as interesting because of their role in AIDS and I was wondering if this could be a reason why some AIDS patients do better than others. Yeast can be a very bad problem among AIDS patients. If their body is producing antibodies so that they destroy these T-helper cells it would certainly affect their immunity levels.
  3. franners

    franners New Member

    You do have a point...........
  4. ohmyaching

    ohmyaching New Member

    Low dose naltrexone is a medication used to treat AIDS and there are people here on this board using it for CFS.
  5. elaine_p

    elaine_p New Member

    with Ampligen, which I think was first developed for HIV. I don't remember any details about it, except I think the results weren't as good as hoped. I think they had to discontinue it for some reason, which was sad because it was helping some people. And I *think* they did/are doing more studies with it.

    I think I read about it in Floyd Skloot's book, "The Night Side".
  6. _joe_

    _joe_ New Member

    here is a list of immune-modulating medications currently developed or tested for HIV/AIDS:
    http://www.hivandhepatitis.com/hiv_and_aids/hiv_exper_drugs.html#immune

    However, immune therapies are currently NOT used in clinical practise to treat HIV/AIDS, all of this is in the experimental state, and the clinical trials have been rather disappointing so far.

    So, currently successful HIV treatment depends to nearly 100% on successful ANTIRETROVIRAL (ARV) treatment. The whole stunning sucess of HIV/AIDS research since 1996 ist based solely on these ARVs, which are able to kick the virus levels down to nearly zero. When the virus is at a low (undetectable) level, the immune system regenerates usually over time *automatically*, even without stimulation by IL-2 or other immunomodulators (which appear to increase only quantitiy but not quality of T cells, by the way)

    However, most HIV experts will agree that the future of HIV treatment is ARV treatment in combination with new immune based therapies.

    But these therapies are not here yet! I do agree, however, that we can expect that CFS patient MIGHT benefit from these effort some time!

    greetings
    joe
    [This Message was Edited on 07/16/2003]
  7. lucky

    lucky New Member

    This idea crossed my mind a long time ago, and when I asked my doctor about a special antiviral med, he replied that it is for HIV, but if I want to spend $7000.00 on it to see if it works, it would be my decision. After that I was on Famvir which did not bring the success at all I expected.
    So meanwhile back to the OLE which has helped me the most lately with the colostrum.
    Sincerely, Lucky
  8. tulip922s

    tulip922s New Member

    Here's a little of my story,,,,CFS/FM 10 years ago,,,,so sick, also had terrible nocturnal leg pains as well and 6 months into CFS/FM I was prescribed quine for leg pains and a month later had total remission from CFS/FM.

    8 years later (8/31/01)I woke up with what I thought was the flu,,,but, knowing deep down the CFS/FM was back. I have now been horribly ill for the last 2 years, much of the time bedridden or homebound.

    I have trouble reading the long posts, so I hope you can stay with me on this, just wanted to give you some background first.

    Both times with this CFS/FM I've had a rash on my back and chest which didn't seem overly significant as the pain, fatigue, memory loss, IBS,,,etc. etc. were far more disabling. But, I had the "rash" biopsied last month and it came back positive Cutaneous Lupus. I do not have Systemic Lupus, just the one that affects your skin.

    Here's where the story gets interesting,,,I have been put on Plaquenil (anti-malarial drug with quine) for the lupus rash 2 weeks ago and guess what? My CFS/FM symptoms are slowly fading. I am finding myself out of bed more a day (4 to 6 hours now), the pain is way down, and my IBS is GONE!

    I have another post here today about NADH, as I also just started taking that,,,so I'm not entirely sure if it's all the Plaquenil or NADH or both.

    My doc seems to think I have CFS/FM which resulted in a messed up immune system allowing me to get the skin lupus. But, why is the quine working so well for me?

    Plaquenil is an immunosuppressant and antirheumatic used to treat SLE and RA,,,,could it also help others with CFS/FM? Has anyone else read of anything like this being used to treat CFS/FM?

    Sorry for such a long post,,,but, wanted to share my story. Tulip
    [This Message was Edited on 07/16/2003]

[ advertisement ]