August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Blogger Katarina Voss writes a comprehensive article on treating ICC-ME with antiretrovirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Countrygirl, Jul 3, 2018.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,884
    Likes:
    20,218
    UK
    http://meversuscfs.blogspot.com/

    Translation by Google.

     
    Mary, MEssias, Wally and 6 others like this.
  2. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    Countrygirl likes this.
  3. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,884
    Likes:
    20,218
    UK
    Yes, it is good to have the details. I think there are about 30 people now to my knowledge who have improved..........some greatly so.......on ARVs. My consultant has been using them too. I haven't tried them, although I would like to get the biacalin, a natural ARV which is helping friends of mine with ME.
     
    Last edited: Jul 4, 2018
    Goldilocks, Wally and ScottTriGuy like this.
  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

    Messages:
    1,655
    Likes:
    3,159
    Japan
    Is that Baicalin you're referring to? Scutellaria baicalensis.
     
    Sancar and Learner1 like this.
  5. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    Interesting. So what is the profile of people who benefit? I believe Truvada runs about US$2,000 a month here, and this would be an off-label use, so it'd be a battle to get it (though maybe worth it...)

     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,180
    Likes:
    4,781
    Toronto, Canada
    Fwiw, I strongly suspect the reason I'm not as sick as almost everyone else I've met with ME is because I take HIV meds.

    I'd love to see an ARV for ME trial.
     
    MEssias, Goldilocks, Wally and 8 others like this.
  7. perrier

    perrier Senior Member

    Messages:
    818
    Likes:
    1,466
    I seem to recall that Dr Davis said he was going to look at these viruses. Any news?
     
  8. bctjr1993

    bctjr1993

    Messages:
    88
    Likes:
    171
    Kansas City, MO
    My doctor just started my on HIV meds (Descovy, to be exact) for my CFS. It has only been 6 days, no change yet, but I will be sure to post about it if I see any benefit or decline from this treatment.
     
    Countrygirl, Goldilocks, Mary and 3 others like this.
  9. bctjr1993

    bctjr1993

    Messages:
    88
    Likes:
    171
    Kansas City, MO
    Where have you heard about these people who have improved? Just asking because I would like to read about them. I just started an ARV for my CFS
     
    PhoenixDown, Sancar and Sidny like this.
  10. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,755
    Descovy appears to comprise tenofovir plus emtricitabine:
    Source: here.

    25 mg seems a low dose of tenofovir, as I believe ME/CFS patients taking tenofovir use daily doses around 150 to 300 mg (although many patients find they need to start on much lower doses and titrate upwards slowly).

    To my knowledge, the only antiretrovirals that have shown benefit for ME/CFS are tenofovir, and perhaps raltegravir.

    Not all antiretroviral drugs target the gammaretroviruses that some have assumed might be linked to ME/CFS, but tenofovir, raltegravir and elvitegravir do.



    But note that as explained above, the benefits that tenofovir produces for ME/CFS may arise by its immunomodulatory effect on IL-10 and IL-12 (an immunomodulatory effect which may then fight the enteroviruses and herpesviruses linked to ME/CFS), rather than by its antiretroviral action.

    Tenofovir also has an effect against human endogenous retroviruses (HERVs), and Dr Brigitte Huber showed that there is increased HERV-K18 activity in the post-mononucleosis subset of ME/CFS. So for that subset, tenofovir's anti-HERV effects could conceivably be helping.



    Note that tenofovir can cause mitochondrial toxicity, but some supplements that may possibly counter this are detailed here. Tenofovir can cause serious life-threatening side effects, though, including lactic acidosis and severe liver problems. See here.
     
    Last edited: Jul 4, 2018
    Goldilocks, Mary, Mandarine and 4 others like this.
  11. bctjr1993

    bctjr1993

    Messages:
    88
    Likes:
    171
    Kansas City, MO
    Interesting. Actually, my CFS literate doctor is prescribing the Descovy on the basis that it acts against HERV's (human endogenous retroviruses). He believes that HERV's could be responsible for my CFS.
     
    Goldilocks, Mary, Ema and 1 other person like this.
  12. Hip

    Hip Senior Member

    Messages:
    11,159
    Likes:
    18,755
    That makes sense. I wonder if your doctor read a specific study showing emtricitabine is effective against HERVs.

    I just found this paper which says:
    I think the authors may have made a slight wording mistake here, as according to Wikipedia, while tenofovir and adefovir are nucleotide analog reverse-transcriptase inhibitors (NtRTI), stavudine, lamivudine and zidovudine are actually nucleoside analog reverse-transcriptase inhibitors (NRTI). Emtricitabine is also a nucleoside RT inhibitor (NRTI).

    This paper found that nucleoside RT inhibitors (NRTI) such as zidovudine, stavudine, didanosine and lamivudine are all effective against HERV-K also, so we might assume emtricitabine is too.

    In addition the paper found that non-nucleoside reverse-transcriptase inhibitors (NNRTI) like
    efavirenz, etravirine and nevirapine are effective against HERV-K.

    So it looks like the NtRTI, NRTI and NNRTI classes of antiretroviral drugs are all effective against HERV-K.




    You can buy tenofovir quite cheaply from the prescription-free pharmacies listed in this post. Here costs work out as around $70 per month if you are taking 300 mg of tenofovir daily.
     
    Last edited: Jul 4, 2018
    Mary, Sancar, Ema and 3 others like this.
  13. xcell

    xcell Always looking for new knowledge and options!

    Messages:
    55
    Likes:
    95
    Germany
    Wally, Mary, Abha and 5 others like this.
  14. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    Thank you for posting the article. It definitely does seem a treatment worth trying for certain patients, but it's not for everyone....

    There don't seem to be specific tests to tell 100% if a patient has a problem that this would solve and the drugs are strong ones and can damage mitochondria, with a lot of oxidative stress. Her point about not strengthening mitochondria with an ongoing illness is interesting, yet one needs mitochondria working for the immmune system to work properly. There doesn't seem to be enough science on the impact of secondary mitochondrial dysfunction in fighting viruses vs. accumulated damage from mito-toxic drugs.

    And, one has to be on them a long time to begin to get benefits. Her points about cistus and reishii were useful.

    My ME/CFS specialist was an AIDS doctor for over 25 years and is familiar with these drugs, yet I haven't heard of him prescribing ARVs for his ME/CFS patients... Anyone??
     
    Countrygirl likes this.
  15. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,884
    Likes:
    20,218
    UK
  16. bctjr1993

    bctjr1993

    Messages:
    88
    Likes:
    171
    Kansas City, MO
    It seems as though my doctor believes that HERV-W is the most likely culprit for my CFS. But yes, I know he has read a lot about ARVs being effective against HERVS
     
    junkcrap50, Countrygirl and Hip like this.
  17. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

    Messages:
    1,655
    Likes:
    3,159
    Japan
    That's very interesting. I can tell you that it is more effective in treating sinus infections than any other treatment I've ever had.
    DSC00001.JPG
     
    Learner1, Mary, Sancar and 2 others like this.
  18. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

    Messages:
    1,655
    Likes:
    3,159
    Japan
    It has been tested against HIV, it is an Antiretroviral.

    Scutellaria baicalensis, the golden herb from the garden of Chinese medicinal plants
    Additionally, it is a potent antibiotic, antifungal, antiviral, anti-tumor, and hepatoprotective substance.

    I avoided discussing my sinus infection with my Doctor because I knew nothing could be done for it beyond decongestants, he had given me Ma Huang already. It was "dumb luck" that I mentioned it to him though, this stuff is powerful and knocked out a severe sinus infection in days.

    Now, what do I do with this knowledge? ;)
     
    Goldilocks, Learner1, Mary and 7 others like this.
  19. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,923
    Midwest USA
    Gah, now it looks like I want to try tenofovir again.

    This time I will start with less than the full dose and see if I can tolerate it.
     
    Sancar likes this.
  20. me-aktuell.de

    me-aktuell.de

    Messages:
    4
    Likes:
    12
    Ms Voss started with only 1/8 Viread (Tenofovir) capsule.
    ELLKAAYE in www.symptome.ch writes to start with low dose and it can take a long time until you reach full dose.
     

See more popular forum discussions.

Share This Page