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Who Prescribes Anti-Retrovirals in US?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by fireflymd, May 28, 2017.

  1. fireflymd

    fireflymd

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    Who prescribes anti-retrovirals in US?
     
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  2. dannybex

    dannybex Senior Member

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    For ME/CFS? I doubt anyone does, after the XMRV fiasco...
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Unfortunate because for whatever reason, some have made total or near total recoveries on drugs like Viread
     
  4. dannybex

    dannybex Senior Member

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    Who?
     
  5. Jesse2233

    Jesse2233 Senior Member

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    Several of Dr William Weir's patients in the UK, and a few people on this board including @Ellkaye

    Jen Brea has also suggested she is using anti-retrovirals in her recent presentation to Congress
     
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  6. dannybex

    dannybex Senior Member

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  7. Jesse2233

    Jesse2233 Senior Member

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    Yea I agree XMRV is very likely not the underlying cause

    Benefit from ARVs is either due to 1) misdiagnosis of ME/CFS 2) a heretofore undiscovered common retrovirus or 3) some unrelated immunomdoulating property of ARVs

    If I had to bet, I'd bet it's 3
     
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  8. fireflymd

    fireflymd

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    If anyone knows of a physician in the US who treats CFS with anti-retrovirals, please feel free to message me directly.
     
  9. halcyon

    halcyon Senior Member

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    Dr. John Chia uses them. However, he does not use any of the integrase inhibitor class because he's not using them for a presumed retroviral infection. He uses the nucleoside/nucleotide analogs because they are generic viral chain terminators that can work on multiple different viral polymerases to a greater or lesser degree.
     
  10. halcyon

    halcyon Senior Member

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    I tried it for 4 months and noticed zero benefit.
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Any IRIS response?
     
  12. halcyon

    halcyon Senior Member

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    No. But keep in mind that I was taking it alongside Epivir, amantadine, Equilibrant, etc. Perhaps if you were completely naive to any treatment of this type and took it you might notice some effect.
     
  13. Jesse2233

    Jesse2233 Senior Member

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    Interesting, that's quite a cocktail. Your onset was due to an enterovirus correct?
     
  14. halcyon

    halcyon Senior Member

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    Yes, sudden onset post echovirus infection.
     
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  15. Keela Too

    Keela Too Sally Burch

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    I wonder that the whole retro-virus idea was abandoned just because XMRV was not the one.

    Surely like bacterial infections, ruling out one bacterium variety, say, E.coli, would not mean ruling out ALL known bacteria as the source of a problem?

    I guess time will tell, and certainly 3) is also possible
     
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  16. Countrygirl

    Countrygirl ME is not MUS

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    Judy's name was on it, but she was allowed no input to the work or to even be present in the building. She was made certain promises about the continuation of the retroviral work, but promises were broken.

    Things are not as they seem.

    I have also heard of a number of people doing extremely well on ARVs, although I didn't hear the rumour/fact that Jen B is using them.
     
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  17. dannybex

    dannybex Senior Member

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    So she was forced to sign it? I know she's peddled the claim that people promised this or that, and says she has the emails to prove as much, and even said if anyone would like to see them, she'd publish them on her website. Not sure why she didn't just publish them in the first place, but regardless, she never did.

    Anyway, with all due respect @Countrygirl, I'm just not buying her whole 'the world is out to stop me' conspiracy theory, for the simple fact that as others have suggested, if the retroviral hypothesis had any merit -- even remotely -- the drug companies that make the ARVs would've been knocking on her door, more than willing to fund further studies so they could greatly expand their market, and thus their profits.

    That didn't happen because the evidence wasn't there.

    If anyone is doing 'extremely well' on the drugs, then one would hope that the doctors involved would publish case studies on their patients, but I'm not aware of any.

    Of course anyone is welcome to try anything they want, including ARVs. Just not sure why they'd want to.
     
    Last edited: May 30, 2017
  18. fireflymd

    fireflymd

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    Who prescribed Viread--Dr. Chia?
     
  19. halcyon

    halcyon Senior Member

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    Yes. He was trialing it on a few patients.
     
  20. fireflymd

    fireflymd

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    Did you have to pay out-of-pocket for an off-label use?
     

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