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

junkcrap50

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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.
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.
I just had an appointment with my doctor yesterday and he too would like to try me on Descovy on the basis that EBV (and cytokines) can activate HERVs, specifically HERV-W. I suspect we have the same doctor.

I was going to post a summary of my doctors appointment, but it seems, by searching PR, that there's a lot of info on retroviruses and CFS.
 

junkcrap50

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@Hip, do you know of any evidence of ARVs effectiveness Enterovirus? I ask solely because they are both RNA-based viruse. However, virology is the my weakest and least understood subject. So I'm likely way off. But I thought I'd ask.
 

Hip

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@Hip, do you know of any evidence of ARVs effectiveness Enterovirus?
I don't think there is any evidence at the moment, though I understand Dr Chia is finding some ME/CFS patients improve on tenofovir, and that may be due to this antiretroviral drug producing an immunomodulatory action that fights enterovirus. It would be interesting to see if enterovirus antibody titers go down after tenofovir treatment.
 
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I found this article recently. Where they link the use of zidovudine against EBV in multiple eclerosis.
What do you think about it @Hip ?

Abstract
We present the case of an HIV-negative patient clinically diagnosed with relapsing-remitting MS who achieved significant disease improvement on Combivir (zidovudine/lamivudine). Within months of treatment, the patient reported complete resolution of previously unremitting fatigue and paresthesiae, with simultaneous improvements in lesion burden detected by MRI. All improvements have been sustained for more than three years. This response may be related to the action of zidovudine as a known inhibitor of EBV lytic DNA replication, suggesting future directions for clinical investigation.

"We propose a different mechanism. Given the link between EBV and MS, it is possible that nucleoside analogues could have a direct effect on EBV, a dsDNA virus, by inhibiting lytic EBV DNA replication. Zidovudine, a component of Combivir, is known to inhibit EBV DNA replication. However, any mechanism must account for the lack of clinical efficacy of acyclovir-class drugs in MS and infectious mononucleosis. Acyclovir drug metabolism is different from drug metabolism of antiretroviral nucleoside analogues because acyclovir requires a viral kinase for phosphorylation. Bypassing this requirement facilitates the accumulation of active drug intracellularly. This unique feature of antiretroviral nucleosides may be important during low-level viral replication or for pre-treatment during a period of viral latency prior to reactivation in the CNS."

Link: https://www.sciencedirect.com/science/article/pii/S2211034818300828
 

Hip

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I found this article recently. Where they link the use of zidovudine against EBV in multiple eclerosis.
What do you think about it @Hip ?
Very interesting, especially their theory that AZT (zidovudine) might work well against low-level EBV infection, which may be the type of EBV infection ME/CFS patients have.

In the paper they suggest that AZT should be tested for any anti-EBV effects in vitro in a cell line. It would definitely be interesting to see the results of such tests.



Though it may be that AZT benefited the multiple sclerosis patient for a different reason: because this antiretroviral drug inhibits human endogenous retroviruses (HERVs), which have been linked to MS.

HERVs are also linked to ME/CFS, and that could explain why some ME/CFS patients experience significant benefit from antiretroviral drugs like tenofovir and raltegravir, which are antiviral for HERVs.
 
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junkcrap50

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I am having trouble getting Vemlidy covered by my insurance, but I think Descovy will be covered. @bctjr1993 and @junkcrap50, do you all know what ICD10 diagnosis code your doctor used for you all? Thanks!
I have no idea. But I will ask. He said we should just approach submitting our prescriptions it like it's a routine thing and not draw any attention to it. Not lie to insurance, but don't say anything about It - just submit and see if they cover it. If not one, then he would try submitting a different one. He said that in my chart he would write down ARV for CFS, but not try to raise any attention to insurance. I'm not sure even if one would need an ICD10 code for a prescription. He said he has a ton of research printed out that he can point to for ARVs and EBV, so he think that's enough justifcation if questioned.

Very interesting, especially their theory that AZT (zidovudine) might work well against low-level EBV infection, which may be the type of EBV infection ME/CFS patients have.

In the paper they suggest that AZT should be tested for any anti-EBV effects in vitro in a cell line. It would definitely be interesting to see the results of such tests.

Though it may be that AZT benefited the multiple sclerosis patient for a different reason: because this antiretroviral drug inhibits human endogenous retroviruses (HERVs), which have been linked to MS.

HERVs are also linked to ME/CFS, and that could explain why some ME/CFS patients experience significant benefit from antiretroviral drugs like tenofovir and raltegravir, which are antiviral for HERVs.
Yes. HERVs are linked to MS. Also, I learned from my doctor, who spent a lot of time researching HERVs, two things can activate HERVs: EBV and inflammatory cytokines (IL-6, TNF-alpha, etc.), both of which are linked as triggers for ME/CFS. So, as Hip said, AZT could just be inhibiting the HERV that EBV turned on.
 

junkcrap50

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I am having trouble getting Vemlidy covered by my insurance, but I think Descovy will be covered. @bctjr1993 and @junkcrap50, do you all know what ICD10 diagnosis code your doctor used for you all? Thanks!
You do for a preauthorization, if one is required. Crossing my fingers that since Descovy is on the formulary, they won’t require one.

Thank you!
Heard back from my doctor. He used the ICD-10 code "B34.9 Viral Infection".
 

Ema

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No problem. Not saying it will work. As I said, my doctor is just going on pretending like everything's standard procedure and lets the insurance company make the assumption that it's for HIV since who else would prescribe ARVs for anything else?
All insurance companies are different anyway, so what would work for one would never be a guarantee of working for another. But it's still good to compare notes to get ideas of what has worked for others in the past.

I am curious who your doctor is, if you are comfortable saying?
 

ScottTriGuy

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my doctor is just going on pretending like everything's standard procedure and lets the insurance company make the assumption that it's for HIV since who else would prescribe ARVs for anything else?
Since there seems to be quite a few ME folks who are responders to ARVs, but they are difficult to access, I always thought a provocative awareness campaign could be:

Got ME?
Get HIV.
 
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@Hip
The Epstein Barr virus is known to cause multiple sclerosis. Another thing is that in other patients, HERVs can also cause this disease.

This article tells you that zidovudine has a direct effect on EBV. And most importantly, it says it has a greater effect than antivirals, as more active drug is accumulated intracellularly. This unique feature of antiretroviral nucleosides may be important during low-level viral replication or for pre-treatment during a period of viral latency prior to reactivation in the CNS.

Other articles also discuss the use of zidovudine along with chemotherapy for lymphomas caused by the Epstein-Barr virus:
"In conclusion, high-dose AZT-based chemotherapy appears to be an efficacious approach for the treatment of EBV-related lymphomas, particularly in the HIV/AIDS setting. This is supported by our preclinical studies demonstrating the biological role of AZT in inducing the viral lytic cycle and apoptosis in aggressive EBV+ lymphoma cells." Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4134930/

This article was demonstrated in vitro and in vivo:
"In recent work, we have demonstrated that the thymidine nucleoside analog azidothymidine (AZT), alone and in combination with other antiviral agents, has in vitro and in vivo activity against lymphomas associated with Epstein-Barr virus (EBV) and human herpes virus type 8 (HHV-8).1 In particular, AZT induces apoptosis in primary early-passage EBV+ Burkitt lymphoma (BL) cell lines.Our data demonstrate that AZT inhibits NF-κB in EBV+ BLs." Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1895122/

All this leads us to think that this treatment could work with the subgroup of CFS post EBV infection, which I describe in this thread. The problem with this treatment is the side effects. An adoptive immunotherapy treatment with specific CD8+ T-lymphocytes against EBV would be better, but this therapy is not yet available.

Therefore, a study of zidovudine for CFS by a doctor, indicating the safe doses of the drug, may be beneficial. Since it's easier to get this treatment.
 

junkcrap50

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@Manuel here's the paper the case study references that shows Zidovudine is effective against EBV. Just want to add it to the EBV links you added.

Anti-human immunodeficiency virus agent 3'-azido-3'-deoxythymidine inhibits replication of Epstein-Barr virus.
  1. J C Lin, Z X Zhang, M C Smith, K Biron and J S Pagano
+ Author Affiliations
Lineberger Cancer Research Center, School of Medicine, University of North Carolina, Chapel Hill 27514.
ABSTRACT
We show that the anti-human immunodeficiency virus agent, 3'-azido-3'-deoxythymidine (AZT), which suppresses infectivity and cytopathic effects of human immunodeficiency virus, also effectively inhibits Epstein-Barr virus (EBV) DNA replication. However, AZT has no effect on four other human herpesviruses: cytomegalovirus, varicella-zoster virus, and herpes simplex virus types 1 and 2. The combination of acyclovir and AZT, while it is not synergistic, has an additive effect against EBV replication. AZT may prove to be a useful drug for treatment of coinfections with human immunodeficiency virus and EBV.

Source: http://aac.asm.org/content/32/2/265
Full Paper: http://aac.asm.org/content/32/2/265.full.pdf
 
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Has anyone had any new experience with antiretroviral drugs or would like to try the treatment regimen soon? :)
 

Wally

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Question - If the hypothesis is that these antiretroviral drugs might work to “quiet” an awakened endogenous retrovirus, how would that hypothesis fit into explaining “cluster outbreaks” of M.E. or C.F.S.?

Edit - The question I have raised above relates to the posts where people have commented that their doctors believe that antiretroviral treatment may be targeting endogenous retroviruses like HERV-K. Have endogenous retroviruses ever been linked to epidemic/contagious illnesses? Trying to understand if an endogenous retroviral theory could explain occurrences of both epidemic and endemic M.E.
 
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Ema

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Has anyone had any new experience with antiretroviral drugs or would like to try the treatment regimen soon? :)
I’m about a week and a half in on Descovy and it is going much better than last time on the old tenofovir formula.

There are still some aside effects though. It seems to make my sleep more restless (partly alleviated by taking it now in the morning) and some mild bloating and GI issues. But nothing that would stop me from taking it at the moment.

Fingers crossed!
 
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Has anyone had any new experience with antiretroviral drugs or would like to try the treatment regimen soon? :)
I've been taking this one, Scutellaria baicalensis, and have had an immediate positive reaction. One of the responses Katharina mentioned in particular,
The first small improvements are sometimes noticeable after a shorter period of time - in some patients also at low doses - but mostly concerning physiological processes, such as improved sleep quality..
 

junkcrap50

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Question - If the hypothesis is that these antiretroviral drugs might work to “quiet” an awakened endogenous retrovirus, how would that hypothesis fit into explaining “cluster outbreaks” of M.E. or C.F.S.?

Edit - The question I have raised above relates to the posts where people have commented that their doctors believe that antiretroviral treatment may be targeting endogenous retroviruses like HERV-K. Have endogenous retroviruses ever been linked to epidemic/contagious illnesses? Trying to understand if an endogenous retroviral theory could explain occurrences of both epidemic and endemic M.E.
Yes. Human Edogenous Retroviruses have been linked to EBV. Research suggests that an EBV infection can trigger and turn on HERVs. Inflammation and cytokines can also trigger and turn on HERVs. I don't have any sources, but my doctor who's started me on ARVs told me about this, which he learned about in all the research he did about it.

Whether or not it's been linked to an "epidemic" or "cluster outbreak", probably not because the research on HERVs is pretty brand new and there's not much research on cluster outbreaks themselves to begin with. However, if a cluster outbreak was caused by EBV or some kind of contagion that causes a cytokine storm, then presumably it could activate a HERV.