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Are you ready to take retroviral drug?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Andrew, Apr 11, 2010.

  1. ukxmrv

    ukxmrv Senior Member

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    Sue,

    Thanks for the suggestion. Money is a big problem for me. That's why I am looking at how India etc are tackling HIV. I have not been able to find a UK doctor with an interest in XMRV on the cheap.... just yet. Hope that it changes.

    I admire your bravery and will follow with interest!
     
  2. cfs since 1998

    cfs since 1998 *****

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    I would be ready but am concerned about getting the dosages right and the possibility for resistance. I don't want to ruin my only chance.

    Ampligen is still not FDA approved and probably never will be.

    I am hoping to myself that once we get healthy again we can stop the antiretrovirals. My personal hypothesis is that the infection stays at a set point, which is why ME/CFS is not as progressive or fatal as HIV, and if we can reduce the amount of virus to that seen in healthy carriers of XMRV and improve immune function, we could establish a lower set point and stay that way unless we experience another trigger.
     
  3. subtr4ct

    subtr4ct Senior Member

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    I have a similar hypothesis. Item A: some people seem to be able to achieve remission, even in the absence of anti-retroviral therapy. Item B: some people are infected with XMRV, but are not sick. Item C: there seems to exist "triggers" for CFS, as though XMRV infection was present and some stress pushed the body past some threshold. To me, these items seem to suggest the possibility of a durable remission, if a person could just back on the right side of the threshold. Stated differently, the body just needs help getting back the upper hand. Getting XMRV under control. Maybe continuous antiretroviral therapy would not be necessary.
     
  4. Hope123

    Hope123 Senior Member

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    Results of clinical trials are just as important to me as a diagnostic test. I'm hoping we'll get a good diagnostic test soon but if clinical trials show good results with reasonable lack of adverse effects, I would consider taking antiretrovirals. Point being there are theories about how XMRV works but if antiretrovirals work, I wouldn't need to know the exact mechanisms to try it. I would be happy with a few small trials as if I wait for a large trial, it might take many years to get results.

    The other consideration would be how sick I am. If I get really sick, I might be more willing to try something earlier. On the other hand, in some illnesses, it is better to get early treatment rather than waiting. Not sure yet how this is for XMRV. Also, cost would be a consideration.

    I am lucky in that my docs have lots of experience using antiretrovirals and are open to following the studies with me. One of them said that it would be great if antiretrovirals worked because she would finally feel like she could actually help me.

    (Sue, Ampligen is available through 2 docs only (Peterson and Lapp I think) and costs like $20,000 a year. But my main concern with it is I don't think it's particularly effective. Hard to know for sure since the company hasn't put out any published scientific studies after their last trial which, to my suspicious mind, means not very effective or bad adverse effects.)
     
  5. rebecca1995

    rebecca1995 Apple, anyone?

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    I'm not taking ANYTHING until the results of clinical trials are in. Good studies will help us calculate the risk-benefit ratio.
     
  6. HopingSince88

    HopingSince88 Senior Member

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    quoted from subtr4ct-

    "I have a similar hypothesis. Item A: some people seem to be able to achieve remission, even in the absence of anti-retroviral therapy. Item B: some people are infected with XMRV, but are not sick. Item C: there seems to exist "triggers" for CFS, as though XMRV infection was present and some stress pushed the body past some threshold. To me, these items seem to suggest the possibility of a durable remission, if a person could just back on the right side of the threshold. Stated differently, the body just needs help getting back the upper hand. Getting XMRV under control. Maybe continuous antiretroviral therapy would not be necessary."

    I believe your theory has good merit. Getting to the other side of the threshold and then letting our natural defenses keep it in check. If I got this vertically from my mom (which I do think is the case) and I passed it vertically to my daughter (who is far more ill than me), then this shows that both myself and my daughter spent many years symptom free prior to a triggering event.

    Dare we hope for this?
     
  7. Cloud

    Cloud Guest

    Getting the upper hand once again has been my objective for many years. I do not still carry the agent that triggered my illness. My illness was triggered by extreme stress and Hep B vaccine, rather than acute infection. All the infections that are making me sick and potentiating this disease today, were there before onset 16 years ago....but they were controlled. My immune system lost the upper hand due to trauma. What we know about xmrv so far solidifies my belief in how this all unfolded.....It explains everything perfectly for me. I was healthy until the immune trauma allowed the activation of multiple latent suppressed infections, including xmrv. Why shouldn't I be able to reverse that and once again gain the upper hand? I think I can, and in fact have been doing that very thing....The question is what all it will take to make that happen.
    I am not opposed to using big gun meds to once again gain the upper hand as long as the risk to benefit ratio is descent. Of course natural methods are preferrable and will probably be the only possibility for many of us with impaired med tolerance issues. So far for me it has been a combination (complimentary medicine) of both. I was on Vistide for a year to suppress CMV and other raging viral infections...maybe now I get to keep that control with natural methods. I think those of us who have been sick for many years will have a harder time getting that control back again with natural methods alone.....but I believe it's possible.
     
  8. willow

    willow Senior Member

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    I can't see myself taking pharma anti-virals but plant and other anti-viral supplements haven't been much better.

    Working on the theory that my health has to be more stable before I use any of these..... To improve stability planning for a spell somewhere cleaner and more tranquil but it might be a while before i pull that off.
     

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