Translation by Google.
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.
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.)