The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Full Remission Claimed

Discussion in 'General Treatment' started by Stretched, Aug 25, 2017.

  1. Stretched

    Stretched Senior Member

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    There is a convincing recent thread in another Forum (HR, July, 2017) where a 20-year PWC ('pure ME/CFS', poster's quotes) claims to be in full remission, arrived at progressively after using the antiretroviral drugs Viread 245mg, and Raltegravir 400mg, twice daily, over a period of 4 years.

    Is anyone here familiar with the viability of these or similar drugs or the likelihood of the validity or reliability of such a remarkable 'cure' given what is known to date about ARV-CFS research, namely the XMRV and pMRV debacle a few years back?

    If even this one case was indeed resolved is it time to line up; and what is the likelihood of a non-CFS/ME specialist treating PWCs with these serious drugs? PWCs are a diverse group.
     
    Last edited: Aug 25, 2017
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  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    fwiw, I take Raltegravir (and ARVs Abacavir and Lamivudine) - I switched onto Raltegravir about 2 years ago - so ARVs did not prevent my ME from manifesting, but I sometimes wonder if I'd be a lot sicker if I wasn't taking ARVs.

    A couple of other folks on here are on ARVs, don't think any of them are 'cured' but have improved QOL.
     
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  3. Stretched

    Stretched Senior Member

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    Is your doc a CFS/me specialist, GP or ID?

    How about side effects?
     
    Last edited: Aug 25, 2017
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I've been taking ARVs for HIV since 2002, so prescribed by my GP who has lots of HIV patients, so sort of a 'specialist'.

    Initially I was on AZT which made me feel sick in a different way to HIV sickness - when I switched off AZT I was able start volunteering and then working again.
     
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  5. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I've seen your videos, good job by the way, and you don't appear to be suffering OI, which can be crippling. :bang-head:
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    Dr William Weir has at least 4 recoveries from Viread and Dr Chia has had a few as well. This is not the norm but still promising and intriguing
     
  7. fingers

    fingers Senior Member

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    Been on Recocovir (combo of Tenofovir and Emitricabine) for 2 months. Seeing improvements, most notably my resting heart rate is moving back towards pre-ME levels and lymph nodes under jaw are down. Still getting some other viral symptoms and peripheral neuropathy, but I do push teh physical activity a lot (former elite triathlete). I've had enough improvement to keep going, think it will take a year or two or three to say I'm 'cured'.

    Side effects? Yes, first two weeks headache and although have a weird head with ME anyway, it was just a bit differerent, not really worse than ME. Then there's the vivid dreams, which continue, are a bit like virtual reality and aren't unpleasant or disturbing.

    XMRV? Mikovits? Keep your eyes, ears, brain open. Lots of dodgy stuff went on. Mikovits isolated/sequenced a real retrovirus which infects humans. Lots of folk with vested interests didn't want it to be. Enough said, more detail is out there. I think we'll see the empirical evidence that folk start to get better on ART...the pioneers.

    Finally, I do it all without a doc. Don't need a prescription. Wonderful. Local HIV clinic have done kidney function tests for me, as if I'm on PREP.
     
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  8. Hip

    Hip Senior Member

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    Tenofovir can cause mitochondrial toxicity in the kidneys, which this study says may be due to depletion of antioxidants, particularly the glutathione-dependent system and MnSOD (MnSOD = SOD2 = mitochondrial superoxide dismutase).

    So possibly supplementation with transdermal glutathione and/or oral N-acetyl-cysteine supplementation (to raise glutathione), tempol (a potent MnSOD memetic which supports support mitochondrial SOD), and selenium (which promotes glutathione peroxidase) may help counter the negative effects of tenofovir.



    Tenofovir may be helpful for ME/CFS because it potently inhibits IL-10, and high IL-10 is a factor which likely acts to prevent viral clearance in enterovirus and herpes family virus infections. Enterovirus, cytomegalovirus and EBV all either make or induce IL-10, most likely as an immune evasion strategy (to thwart the antiviral immune response). So if you can inhibit IL-10, that will be a counter-measure to the IL-10-producing immune evasion strategies of these viruses.

    I read that Dr Chia uses tenofovir for ME/CFS patients with enterovirus infections, but he finds more patients respond to the antiviral lamivudine than they do to tenofovir. Ref: 1 Of course Dr Chia's mainstay immunomodulator is oxymatrine, which he says leads to major improvements in 30% of ME/CFS patients with chronic enterovirus infections. Ref: 1
     
    Last edited: Sep 6, 2017
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Every drug causes mitochondrial toxicity but if people have more energy while using it then id say these possible negative effects are probably a small number and probably found in hiv patients on multiple hiv meds?

    Metformin is another drug which gets mentioned of causing mito problems yet its the most recommended drug for antiaging medicine. Weigh up the possibility of a risk occurring with the more likelyhood a drug will help.

    Just a thought.
     
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  10. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Does it? :confused:
     
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  11. fingers

    fingers Senior Member

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    Haha pmsl.
    It's like GET and CBT cures ME.
     
  12. fingers

    fingers Senior Member

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    Come on folks, have any of you got anything REALLY INTERESTING to say???
     
  13. Jesse2233

    Jesse2233 Senior Member

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    What's your activity level on the ARVs?
     
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  14. Countrygirl

    Countrygirl Senior Member

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    (((((((((((((((((((@fingers)))))))))))))))))))))))))))) :hug::hug::hug::hug::hug::hug::hug::hug:

    Welcome back!

    So pleased to hear your news and look forward to you joining the growing army of those who have/are recovering. :)

    Absolutely right.!

    I look forward to the day when the truth of those years becomes known and the circulated misrepresentation is corrected, allowing more people to get their lives back.
     
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  15. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Challenge accepted. :rofl:


    Truvada
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Approx $50 a month from online pharmacies
     
  17. Hip

    Hip Senior Member

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    Only a few drugs are linked to mitochondrial toxicity, as far as I am aware.

    But anyway, I am not saying that the mitochondrial toxicity is a reason to not try tenofovir; but suggesting that taking antioxidants like glutathione might be a sensible precaution when using this drug. Rich Van Konynenburg and others believed that ME/CFS patients are low in intracellular glutathione, so might be more vulnerable to mitochondrial damage from a tenofovir-depleted antioxidant system.


    The study I mentioned earlier said that in rats, tenofovir caused a 50% decrease in glutathione, 57% decrease in superoxide dismutase (SOD), and a 45% reduction in glutathione peroxidase.

    So transdermal glutathione and/or N-acetyl-cysteine supplementation (to raise glutathione), tempol supplementation (to support mitochondrial SOD), and selenium (which promotes glutathione peroxidase) may help counter the negative effects of tenofovir. Tempol is expensive and hard to get hold of (and requires refrigeration and a cold pack during shipping); but the others are common supplements.

    It's possible that the side effects that ME/CFS patients typically experience when starting tenofovir could actually be due to antioxidant depletion, and so it would be interesting to see if antioxidant supplementation might prevent or mitigate these side effects.
     
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  18. fingers

    fingers Senior Member

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    Was just thinking about that. OK, as an ex athlete, I still keep a log. It's up 15% in terms of volume, and up about 10% in terms of intensity. Recovery is noticeably improved.
    I'm now up to about 20% of my pre-ME activity volume...but probably still doing more than the average Joe/Joanna.
     
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  19. cigana

    cigana Senior Member

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    Is there a link to the original claim?
     
  20. fingers

    fingers Senior Member

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    ahah...well maybe getting all the right folk together could make that happen a bit faster than simply letting 'Nature' take its course. Lovely to hear from you CG, hope you're OK :balloons::heart::pill:
     
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