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

Countrygirl

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http://meversuscfs.blogspot.com/

Translation by Google.

I receive numerous inquiries from both home and abroad from doctors who have been alerted to my blog post by my patients with myalgic encephalomyelitis (ME) on the successful antiretroviral therapy (ART) of my ME-ill daughter. These physicians are interested in my therapy regimen developed by me for my daughter and sometimes also want to clarify other questions about ART at ME.


So far, I have answered these questions individually. In order to save myself this steadily growing (unpaid) work in the future, but above all, to also involve the patients in the therapy concept and to make them understand my method, I have now decided to publish my very successful treatment strategy. Unfortunately, I have also found that not all doctors who have written to me take my advice on the urgent and often required blood and urine checks seriously. Even my suggestions on dosage and concomitant treatments are apparently not always taken seriously. By publishing my concept, every patient can now get an idea and decide for themselves whether to accept my suggestions.

Basically, I would like to say in advance that this is by no means medical advice or advice, but only suggestions, based on the experience gained by me and other patients as well as on my intensive literature research on the subject.Incidentally, I refer to my disclaimer.

ART at ME:
By some patients, Dr. John Chia also reported a successful ART with the nucleoside reverse transcriptase inhibitor lamivudine . In addition, I have been reported by patients successfully treated with Truvada , a combination preparation containing tenofovir and used in pre-exposure prophylaxis ( PrEP ).

Since retrovirus research at ME is torpedoed for various reasons (see my bookME - Myalgic Encephalomyelitis vs. Chronic Fatigue Syndrome: Facts background research), there are unfortunately no tests that could serve as a reliable indicator of an ART.One could possibly look for decreased NK cell activity, for a defect of the antiviral enzyme RNase L, increased HHV-6 titers, and an increase in plasma anellovirus. It may be easier to identify responders with such tests, but it certainly is not, as valid tests are still lacking. Also an SG-PERT , a test that quantifies reverse transcriptase activity and, for example, at the National Reference Center for RetrovirusesUnfortunately, nothing is said about whether one belongs to the responders. This has been shown by our and the experiences of other patients. Perhaps this test does not capture the possibly extremely low-threshold activity of the HGRV reverse transcriptase enzyme?

Even if one is not a fan of the retroviral causation hypothesis, Tenofovir could be considered as a treatment option for ME patients, as it has immunomodulatory properties and is anti-inflammatory - at least in patients with proven retroviral infection .

However, since past experience shows that it is usually necessary to add an integrase inhibitor after some time so that the patient can continue to make progress, there are some indications that the efficacy of tenofovir in ME patients is less due to its anti-inflammatory and immunomodulatory properties than the inhibition of retrovirus replication.

Requirements for an ART at ME:

Basically, according to the current state of knowledge, it can probably be assumed that iaR will benefit from ART only for patients who fulfill the international consensus criteria (Carruthers et al., 2011, here the criteria as a short version in German ). These are patients whose main symptom is not fatigue or generalized fatigue, but pathological muscle fatigue, with the result that neuroimmunological deterioration (PENE) occurs after even less effort. (More on ME in my book )

If the doctor has no previous experience with ART, then you should definitely work with an HIV specialist to better assess any risks and side effects.
mitochondria:

Most frequently, ME patients are tampered with mitochondrial function by all means possible, not infrequently with the result that the patient is subsequently worse off. But what if the mitochondria are strengthened and the cells infected with a retrovirus can be strengthened and multiply faster?

Therefore, in my opinion, it is important first to control the possible retrovirus and all other, mostly occult viruses and bacterial infections. Incidentally, the mitochondrial function diminished by the disease is repaired by itself, of course, thanks to the ART - in any case our experience.

Therefore, strengthening mitochondrial function using synthetic ARV is above all about intercepting a potentially harmful effect of the drugs. It is time-delayed for Viread / Vemlidy use N-acetylcysteine (NAC, caution in histamine intolerance !), Glutathioneor niacinamide (Vitamin B3 flush-free). Incidentally, it could be shown

in vitro that NAC and glutathione also suppress the replication of HIV-1, thus, in addition to their mitochondrial-enhancing properties, they are also antiretrovirally active.Especially in HIV patients with advanced immunodeficiency, a short-term, high-dose combination treatment with NAC and vitamin C seems to be of therapeutic value .Glutathione deficiency is also common in HIV-infected individuals and, therefore, taking NAC seems to be a useful adjunctive therapy, not only to increase protection against oxidative stress and improve immune system function, but also to detoxify drugs boost.Therefore, treatment with NAC could also be useful in other diseases in which glutathione deficiency or oxidative stress plays a role (such as in ME!) - the results of astudy on HIV,

Niacinamide (vitamin B3), specifically nicotinamide riboside, has been shown in animal studies to be a promising treatment strategy for mitochondrial myopathy. It has a favorable effect on energy metabolism and neuroprotection .

But perhaps more importantly, niacinamide seems effective against multi-drug resistant bacteriato be, with which also healthy, but especially ME patients are often abundantly populated. Colonization, which is generally tolerated by healthy people, could have a devastating effect on the weakened ME patients, possibly in conjunction with the viral loadings. With niacinamide flush-free 500mg daily, a dose that is still below theTolerable Upper Intake Level set by the European Food Safety Authority , there is a low-cost option to combat hospital germs.

A discontinuation of therapy can lead to a return of the full picture of the disease relatively quickly. Attempts to establish a weekly two-day break in order to minimize the risk of toxicity were not effective in our case, because no later than the second day a significant worsening of the condition and symptoms rekindled.

Even with a very successful ART, a few, but not always necessarily limiting, symptoms may persist for quite some time. Whether a completely symptom-free life under ART is possible, we are currently not able to say.

During recovery mood swings and a temporarily increased irritability, altogether a certain mood lability, may emerge. The same was reported by convalescents of earlier epidemics. ( Lancet 1956 ) Interestingly enough, these symptoms are absent or very rare in many seriously ill patients during the illness. Whether they are pathologically conditioned or only come to light through the attainment of full awareness of the dimensions of the losses suffered by the disease, which the critically ill can not fully realize, has not yet been explored.

Another hurdle during gradual regeneration is the difficulty of regaining confidence in one's own body. After years of experience that any form of stress leads to a deterioration of the condition, a changeover is not always easy. However, over time, trust returns, when, often enough, you have the experience that you no longer have to "pay" for physical, mental and emotional exertion with a post-exertional Neuroimmune Exhaustion (PENE).

But one thing you should know before deciding on a ART: ARV are no sweets!Therefore, we hope that there will be treatment options in the near future that will eliminate the need for synthetic ARVs. And I already have an idea ...
This blog is dedicated to dr. Judy Mikovits. (This blog is dedicated to Dr. Judy Mikovits.)
 

Countrygirl

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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.
 
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Learner1

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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...)

Since brand-name Truvada was approved for HIV prevention six years ago, its average wholesale price has increased by about 45 percent. Now, the drug — which rakes in billions of dollars in annual global revenue for its manufacturer, Gilead Sciences — carries a list price of close to $2,000 for a 30-day supply.

https://www.npr.org/sections/health...-prevents-hiv-pushes-it-out-of-reach-for-many
 
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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, although I haven't tried them, although I would like to get the biacalin, a natural ARV which is helping friends of mine with ME.
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
 

Hip

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My doctor just started my on HIV meds (Descovy, to be exact) for my CFS.
Descovy appears to comprise tenofovir plus emtricitabine:
Each tablet contains 200 mg of emtricitabine and tenofovir alafenamide fumarate equivalent to 25 mg of tenofovir alafenamide
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.
 
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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 uses daily doses around 150 to 300 mg (although may 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.
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.
 

Hip

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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.
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:
We tested the following nucleotide RT [reverse transcriptase] inhibitors: tenofovir, abacavir, stavudine, lamivudine, and zidovudine. ... all nucleotide RT inhibitors showed significant and dose-dependent inhibition of HERV-K
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.




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...)
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.
 
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Learner1

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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??
 
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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.
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
 
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I haven't tried them, although I would like to get the biacalin, a natural ARV which is helping friends of mine with ME.
It has been tested against HIV, it is an Antiretroviral.

Scutellaria baicalensis, the golden herb from the garden of Chinese medicinal plants
Baicalin has very good anti-HIV-1 activity as a non-nucleoside reverse transcriptase inhibitor [45]. Moreover, baicalin can prevent the entry of HIV-1 into animal cells by perturbing the interaction between HIV-1 Env and HIV-1 co-receptors on the cell surface [46]. Baicalin has been adopted as one of the popular lead natural products for preventing HIV infection [47].
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? ;)