Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, July 9, 2018

A discussion of anti-retroviral drugs in the treatment of ME

There's an interesting thread on Phoenix Rising about the use of anti-retroviral (ARV) drugs in the treatment of ME.  Many people, including my doctor, Dr. C, believe that ME is caused by retroviruses. (Dr. C specifically focuses on enteroviruses, which are a type of retrovirus).  The entire thread is worth reading, but if you are short on time, here are a few highlights:

[First, I must give the caveat that the original post in the thread consisted largely of a Google translation of a blog post by a German doctor.  The translation is not perfect and it is not always possible to discern the meaning, but this is my best attempt.]


  • A German doctor/ME specialist, Katerina Voss, who has successfully treated patients, including her own daughter, using a the ARV drug tenofovir (brand names: Viread and Truvada) (a Hepatitis B and HIV drug) .
  • Dr. John Chia has succesfully treated some patients with the ARV drug lamivudine (brand name Epivir) (developed for Hepatitis B and HIV). 
  • Voss states that a potential side effect of ARV treatment is impaired mitochondrial function, which is already a problem for ME patients in the first place.  To combat this, she recommends supplementing with "N-acetylcysteine (NAC, caution in histamine intolerance !), Glutathione or niacinamide (Vitamin B3 flush-free)."
  • One poster states he/she anecdotally knows of about 30 patients who have improved using ARV treatments. 
  •  Other posters report success with herbal ARV scutellaria baicalensis, also known as Baikal skullcap or Chinese skullcap.  There is no information on dosing.
  • ARVs might lead to improvement not because of their anti-retroviral properties, but because they can also be immune modulators. This is always a possibility.
The full thread can be found here... https://forums.phoenixrising.me/index.php?threads/blogger-katarina-voss-writes-a-comprehensive-article-on-treating-icc-me-with-antiretrovirals.60633/

In 2012-2013, I wrote about my experience trying Epivir under Dr. C's care.  Here are excerpts from the two pertinent posts:

Before trying Epivir:

Epivir

Epivir is an antiviral that was originally used to treat HIV patients.  HIV patients often initially experienced significant improvement with Epivir, but the virus would then adapt to the Epivir after a year and the drug would lose it's effectiveness.  For this reason, it was later used in combination with other antivirals to have a more long-lasting benefit.  Dr. C believes it can have a more long-lasting benefit for PWME's as well, even without combining it with another drug.

Dr. C states that Epivir is a fairly safe and non-toxic drug, with few significant side effects being reported.  The side effect known to Dr. C, lactic acidosis, is theoretical - Dr. C has never seen a patient who actually experienced it.  

Dr. C's studies have shown that Epivir can be effective when combined with Equilibrant for some patients, and when combined with Inosine for others.  It works in about 30% of the patients for whom he has prescribed it.  When it does it work, it seems to work quite well.  

Dr. C related several anecdotes in which patients had very good success with Epivir, including a story of one patient who was apparently brought back to nearly normal functioning by a combination of Epivir and another unspecified antiviral (Valcyte?)  Dr. C cautioned however, that Epivir is not something that normally cures patients...in other words, if a patient improves and then stops taking the drug, the virus will come back just as strong as before.


And after attempted treatment with Epivir:

Epivir

Next we discussed how I tried Epivir but was forced to quit after only 3 days due to a major flare in my shortness of breath, which landed me in the Emergency Room.  Dr. C stated that he and his team have recently discovered that some antivirals actually increase the replication of certain viruses while suppressing others. Since I haven't had a stomach biopsy and we don't know what specific enterovirus I (may) have, we're doing guesswork at this point. He said that the shortness of breath could also have been a die-off reaction, or it could have been the stimulation of viruses in my lungs.  He said it's not worth testing either theory and I agreed. 

To illustrate the point about antiviral medications having different effects depending on the virus, Dr. C mentioned that patients for whom echovirus 6 and/or 7 is a major contributing factor to their ME/CFS don't respond to Epivir.  Epivir is simply ineffective against echovirus 6 and 7, but very effective against other viruses. 

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