More on Ampligen, also Nexavir

Discussion in 'Fibromyalgia Main Forum' started by Gretchen12, Feb 24, 2007.

  1. Gretchen12

    Gretchen12 New Member

    From "Osler's Web" (Page 535 of paperback edition):

    "Privately Cheney had significant reservations about the drug and was increasinly uneasy in the face of HEM officials' excitement over the success of the trials. The Charlotte clinician believed there were important questions about the long-term use of the drug that had yet to be addressed. In low doses, Ampligen stimulated the immune system; in higher doses, it down-regulated an overactive immune system. What if, Cheney postulated, a patient was prescribed Ampligen at a high dose in order to down-regulate immune system activity, thus reducing toxic levels of cytokines such as interleukins, but was later taken off the drug. Would the patient's immune system be rendered inoperative?

    "I really think this drug COULD make you worse, Cheney ruminated. That doesn't mean the drug's not effective. And it doesn't mean that the drug's not good. It's just that there are some pitfalls in its use that we damn well better know about.

    "Cheney's theoretical musings seemed well founded, given the testimonials of patient who had been abruptly cut off from their Ampligen lifeline at the trial's end. More than a few sufferers reported that they felt worse in the weeks following the trial than they had felt at any time in their years of illness."

    I was thinking of trying Ampligen, but the more I looked into it the more reluctant I became--finally decided not to try it. I have talked periodically with a lady in NC who has been on Ampligen for over 2 years and is "somewhat" better. She said to me that she often wonders if the Ampligen has helped or her lifestyle changes. She is far from being cured and has spent a veritable fortune on the treatment.

    As to Nexavir. I tried this last year. I did the injections, not the gel. Anyway, after 4 months of daily injections I saw NO improvement. I, too, was told that it was "Ampligen light" (whatever that means) and was willing to try it--was assured that it was safe and benign. I have heard that it helps some people, but it didn't help me.

    My theory is to try something for 3-4 months and if it is not working go on to something else. Also, I don't want to try anything that might cause harm.

    I am now starting Dr. Myhill's protocol--vitamin supplements and rest. Rest and sleep are big issues with me; I can't seem to get to bed early as evenings are the only time I have a little energy.

    Also, I am working on my adrenals.

    I hate this disease for stealing our lives and so wish for a cure.

    Gretchen





  2. Gretchen12

    Gretchen12 New Member

  3. Gretchen12

    Gretchen12 New Member

  4. Gretchen12

    Gretchen12 New Member

  5. cherylsue

    cherylsue Member

    Ampligen does sound a little scary. I know I wouldn't try it for my relapsing/remitting CFS. I think you would have to be in a pretty bad way.

    I am on the Nexavir gel. However, Dr. Cheney likes it, and uses it in his protocol. I have to trust someone, and I think he and Dr. DeMeirleir have a pretty good handle on the the disease. I think they are the true trailblazers.

    Drs. Petersen, Lapp, and Bateman are doing the Ampligen trials. It's experimental, so maybe we should take and wait and see approach.

    Thanks again,
    CherylSue