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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Dr Mikovits' XMRV treatment options: which possible now in UK?

    Also I wonder, if she started ARV's , because I think she is high chance XMRV, whether the XMRV is still detectable maybe by serology. I am encouraged by Dr Snyderman's letter to Dr. Deckoff Jones in her blog...
  2. P

    Dr Mikovits' XMRV treatment options: which possible now in UK?

    The treatment is known as ADE . Currently she is having the high dose cytosine . I think it kills off the white blood cells , just wondered if it would affect XMRV or the detection of it. I'm going to ask redlabs . Pete'
  3. P

    Dr Mikovits' XMRV treatment options: which possible now in UK?

    It's now been about 2M and I feel a little better. Now my wife has been diagnosed with Acute Myeloid Leukemia and is having chemo. I want to get her blood tested at Redlabs but does any one know if the results would be affected by chemo ? Thanks, Pete'
  4. P

    xmrv+ starting AV's tenofovir and raltegravir

    Thanks for all the info' Pinky . I'm now on the ten and zid . Just MEish and tummy ache so far. Hope you're good , Pete .
  5. P

    Dr Mikovits' XMRV treatment options: which possible now in UK?

    Hi , I'm now on the ten and zid . Just a bit MEish and a tummy ache . I'll try to keep you posted of progress. Am I one of the first in Britain ? Pete .
  6. P

    xmrv+ starting AV's tenofovir and raltegravir

    Sorry hope both come out
  7. P

    xmrv+ starting AV's tenofovir and raltegravir

    P.S. I just remembered Pinky , Dr. Deckoff Jones advised low doses building up in quarter tab intervals to minimise side effects. Can you come down a bit on dose and build up slow ? Best Wishes , P.
  8. P

    xmrv+ starting AV's tenofovir and raltegravir

    Hi All , Thanks for the posts. The assistance for Ral is only for the US I think , correct me if I'm wrong . I think I read that Dr. Brewer said it didn't make much difference which of...
  9. P

    Dr Mikovits' XMRV treatment options: which possible now in UK?

    Hi All , I don't think we get much help here in the UK. I've been following Drs. Mikovits and Deckoff Jones . I think this is the best hope. I just found out I am XMRV+, so I sent for AZT and viread. Isentress is expensive and I can't get pers. The no pers. places don't do it I think. You can...
  10. P

    xmrv+ starting AV's tenofovir and raltegravir

    Hi Pinky , I am pleased to read how well you seem to be getting on even after just a few days . Long may it continue ! I live in England and have just found out I am XMRV+. I would like to be on those drugs too but I can't find a doctor to prescribe for me. Also , although I can get AZT and...
  11. P

    My Antiretroviral Trial

    I think many of us will have to settle for just the two drugs , either because Isentress is so costly or because we cannot get a perscription. I would like to take all three but I cannot find a place on line to sell Isentress without a perscription. Dr J., are you taking on any private patients...
  12. P

    From the 1st annual XMRV conference

    Leela , presumably with your new system we could all start doing that and see if we get better. The problem is the cost of Isentress especially in the UK. The trial may not work as well with just the other two. But I think it is important to have the test first , if it is XMRV neg we seem to...
  13. P

    Obtaining the ARVs now/soon?

    As Isentress is so expensive what is the view about half or smaller doses of it with the other two?
  14. P

    From the 1st annual XMRV conference

    Good post Mark . With all the underlying differences so apparent from the conference how long do we think it will be before you can go to your local family doctor and get medicine ? I reckon 5 to 10 years if I had to put money on it. I think our best bet is our 'own' research , like you , Mark...
  15. P

    Obtaining the ARVs now/soon?

    I also would be open to contributing , I think the problem might be the willing doctor. They will not stick their necks out for us. Why should they ? And at the moment they can't even agree on how to test us , never mind doing it , how to interpret results , etc. And no money yet except what...
  16. P

    Obtaining the ARVs now/soon?

    Further investigation and thoughts. I since found Isentress available . It's at No perscriptionneeded.com. 15 dollars a tablet. There are, rightly, a lot of warnings about ARVs , but not so much about the risk of keeping XMRV as a guest. I take it that RVs are not very friendly to us....there...
  17. P

    Obtaining the ARVs now/soon?

    Hi, I am new so please excuse lack of knowledge. Am I right in thinking that only the xmrv+ people have benefited from ARVs and these when all 3 drugs used as Dr.Jamie and Ali ? Maybe those with MLVs ( Daffodil ?) need a slightly different protocol? Is there any kind of record of these different...