Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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My Experience on AntiRetroVirals

Discussion in 'General ME/CFS Discussion' started by Ellkaye, Nov 8, 2015.

  1. Ellkaye

    Ellkaye

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    Got ME/CFS after MMR vaccine 20 years ago as a teenager.
    Was at 50%/5 on the Bell/Lerner scales prior to treatments.
    Currently treated with continuous Viread 245 mg daily with a few days off fortnightly and 800 mg Raltegravir pulsed in fortnightly too. Multivitamins only other thing I take.
    Am now at 95%/9.5 on the Bell/Lerner scales. so that is is 45%/4.5 increase on those scales.
    All done under strictest medical suveillance. Everyone is different but that's my story. I am not saying this is a model to follow but just reporting my case. Different people need different ARV's. Not the same in everyone...

    My observation is that the band is playing on and that the 5 million pound fiddle that is the Pace study is the most expensive instrument in the band it would seem.....

    HIV negative. All other tests more or less normal/within normal range/intermittently abnormal/normal so not significant.

    That's All Folks
     
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  2. justy

    justy Donate Advocate Demonstrate

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    That's great news - so happy for you. do you mind telling us which country you were treated in. I presume this was private treatment. did you see an M.E specialist for this, or some other Dr. Why antiretrovirals?

    Thanks
    Justy.
     
  3. shannah

    shannah Senior Member

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    Congratulations! Great story. How long has it taken to achieve this level of improvement?
     
  4. Bob

    Bob

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    Point of interest: I think Viread is also a chronic Hep B treatment, an well as an HIV treatment.
     
  5. Countrygirl

    Countrygirl Senior Member

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    I have been checking every day for this post for some time, Ellkaye! Thank you for this exciting information and I do hope others who have been following this regime will now follow your (and your doctors') courageous example and let us know their experience with this treatment. I know it can't suit everyone, of course, but to know the percentage would be wonderful.

    I am so thrilled for you!

    I guess you will have to take the ARVs for life. Is that so?


    Life-long good health to you!

    For the rest of us...........the band plays on........................and .....................on :cry:
     
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  6. Bob

    Bob

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    Did we know these drugs were being tested?
     
  7. halcyon

    halcyon Senior Member

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    This is the point I would make as well. Several ARVs have efficacy against different types of viruses, not just retroviruses. Can't assume anything about cause based on this treatment working.
     
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  8. Hip

    Hip Senior Member

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    Hi Ellkaye, thanks for posting your story.

    So you got this improvement ME/CFS from taking Viread (tenofovir) and Isentress (raltegravir). Can I ask, how many months of drug treatment did it take to get from 5 to 9 on the Bell/Lerner scales?

    A score of 5 on the Dr Lerner's Energy Index Point Score probably corresponds to mild ME/CFS (see here for a description of the mild, moderate and severe levels of ME/CFS).
    So these drugs enabled you to almost get back to the normal healthy state, from a starting position of mild ME/CFS.



    Dr Jamie Deckoff-Jones And Raltegravir

    You will perhaps know that Dr Jamie Deckoff-Jones and her daughter Ali both had improvements in their ME/CFS after taking anti-retrovirals. They took:

    tenofovir (Viread) 300mg once daily
    raltegravir (Isentress) 400mg twice daily

    But the interesting thing was that when Dr Jamie came off raltegravir, she stopped improving; but her daughter Ali who remained on raltegravir kept on improving further:



    Raltegravir Is Antiviral For Herpes Family Viruses

    The interesting thing about raltegravir is that as well as fighting retroviruses, raltegravir is effective against cytomegalovirus, and herpes simplex virus, inhibiting replication by a 30- to 700-fold (ref: here).

    In fact, raltegravir may be effective against all herpes family viruses, including HHV-6, EBV, varicella zoster virus (ref: here).

    Raltegravir blocks the functioning of an essential protein called terminase needed for the replication of herpes viruses.

    So raltegravir may be as good as Valcyte in targeting a broad range of herpes family viruses, with the added advantage that raltegravir is much better tolerated that Valcyte.

    Thus is may be that your improvements in health were not related to reducing retrovirus loads, but were due to reducing herpes family virus loads.



    There is also a thread here by @Charles555nc who noticed anti-retrovirals including raltegravir improved his ME/CFS symptoms. He said that at a guess, he would attribute 85% of the improvements he obtained to raltegravir.
     
    Last edited: Nov 29, 2015
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  9. Hip

    Hip Senior Member

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    @Ellkaye
    Did you require any special monitoring by your doctor (like regular liver function tests) for these two antivirals that you took?
     
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I had lunch today with a friend who is also HIV+ (but not m.e.) and he switched his regime 2 weeks ago to a new ARV cocktail Triumeq (abacavir, dolutegravir and lamivudine) - he said the constant anxiety he had been experiencing on his previous ARVs totally disappeared.

    That, and the other HIV thread, got me thinking - I said to him maybe I should try different ARVs to see if they have an effect on m.e. - and now I'm reading about raltegravir - I see my doctor on Tuesday and will ask her about adding or switching my ARV regime.
     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  12. halcyon

    halcyon Senior Member

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    Dr. Chia is using lamivudine for enteroviral ME patients with varying success. Perhaps worth a shot.
     
  13. Hip

    Hip Senior Member

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    Interesting. Looks like the reason they are trying raltegravir is because some researchers think MS might be caused by endogenous retroviruses:
    I guess though that even if raltegravir does ameliorate MS symptoms in this clinical trial, that will not prove the HERV theory of MS, because other MS researchers think Epstein-Barr virus is the cause of MS, and raltegravir likely inhibits EBV as well as retroviruses.
     
    Last edited: Nov 8, 2015
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  14. barbc56

    barbc56 Senior Member

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    I think this was before xmrv was found to be contamination. She is now of the belief that she has chronic lyme, but then she's also into vaccines are evil, so that makes it difficult to say what protocal she is now advocating.

    Barb
     
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  15. Hip

    Hip Senior Member

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    @barbc56
    It is true that Deckoff-Jones and Ali took raltegravir to target XMRV at a time when people still thought XMRV might be a cause of ME/CFS.

    But I am saying that the reason they both improved while taking raltegravir might be related to the fact that raltegravir has potent antiviral effects against herpes family viruses.
     
    Last edited: Nov 9, 2015
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  16. barbc56

    barbc56 Senior Member

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    @Hip Thanks. I may be behind the times.

    Have they been diagnosed with herpes?

    Barb
     
  17. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks - I'm currently taking Kivexa (lamivudine + abacavir) and Viramune (nevirapine).

    2 thoughts:

    Surely by taking 3 ARVs, they must be covering much of the retroviral 'spectrum' - thus, (my) m.e. is not caused by a retrovirus.(?)

    Or, if (my) m.e. is caused by a retrovirus, how much more sick would I be if not for the effects of my current ARVs. (they are either having no effect on the m.e. retrovirus or partially containing it).
     
  18. Hip

    Hip Senior Member

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    I just been searching through Dr Jamie Deckoff-Jones's blog. She writes she does not have active herpes infections:
    So perhaps my herpes virus speculation is wrong.

    However, she does not mention whether she or her daughter Ali were tested for cytomegalovirus, which raltegravir is proven to fight.



    Another reason why raltegravir might help ME/CFS related to the HERVs (endogenous retroviruses) that Dr De Meirleir et al found activated in the gut tissues of 8 out 12 ME/CFS patients tested. (Dr Huber's ME/CFS research looking for HERVs in the blood found nothing; but when Dr De Meirleir tested the gut tissues, he found activated HERVs).

    It is possible that the chronic enterovirus infections that Dr Chia found in the guts of ME/CFS patients could be activating these HERVs in the gut. And then activated HERVs themselves have been speculatively linked to autoimmunity...
     
    Last edited: Nov 9, 2015
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  19. Hip

    Hip Senior Member

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    Here is another clinical trial using anti-retrovirals to try to reduce levels of the endogenous retrovirus HERV-K, which is found in amyotrophic lateral sclerosis (ALS).

    The anti-retroviral drugs they are using to fight HERV-K are:

    darunavir — a protease inhibitor
    ritonavir — a protease inhibitor
    raltegravir — an integrase inhibitor
    zidovudine (AZT) — nucleoside analog reverse-transcriptase inhibitor

    A good list of anti-retrovirals is give here.
     
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  20. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Interesting that they are starting patients on all 4 at once. I'd thought they'd try 1 at a time.
     

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