Summary of 3rd Visit with Dr. C

I had my third visit with Dr. C yesterday.  I reported that the Equilibrant has undoubtedly helped me feel better by about 5% on my personal rating scale.  The increase may have been even more significant if I hadn't used the resulting increase in energy to engage in additional activities, leading to crashes.  But all in all, my crashes seem to be shorter and less severe on the combination of Equilibrant and ImmunoStim.

The Inosine experiment, however, was a failure.  For three weeks, I tried taking 2 Inosine tablets, 2 times daily, and I saw no improvement.  This wasn't a surprise, as apparently only 40% of the approximately 70 patients who tried Inosine with Equilibrant saw any additional improvement.

Amantadine

Our next step is to try a drug called Amantadine, which is currently FDA-appvoved for Influenza and Parkinson's disease.  Dr. C only recently began using it for ME patients, but he has seen some encouraging initial success after trying it on 20-30 patients.   

In a prior post, I wrote a brief preview of Amantadine based on what Dr. C described in my previous visit.  The gist of it is that Amantadine is supposed to prevent the double strand RNA viruses (enteroviruses) from replicating.  It does this by blocking the virus from contacting the ribosome inside the cells, by interfering with the internal ribosome entry sequence (IRES).  Dr. C explained that it is like blocking a key from its corresponding keyhole, thereby preventing the replication process from being turned on.  

Side effects of Amantadine, according to Dr. C, are minimal.  Any side effects reported were in "older patients" (not defined), and included slight cardiac arrhythmias.   

I'm supposed to take Amantadine for one month.  If I haven't seen any improvement after a month, I'm to quit and move on to the next drug...

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.

Looking to the Future

Dr. C stated that if these two options don't work, then he will be "close" to running out of tricks.  However, he is hopeful and excited about a class of drugs currently in development by the drug companies for the treatment of Hepatitis C.  When I asked why he believes that a drug for Hepatitis C would be effective for ME/CFS, he explained that Hepatitis C is also caused by a double-strand RNA virus (enterovirus), thus any research on drugs developed for any other enteroviruses should help PWME's.

Dr. C noted, however, that a fresh wave of politics and in-fighting between the drug companies is delaying the development of these drugs.  Apparently one drug company holds the secret to 1/2 of the magic formula, and another drug company holds the secret to the other half.  Both companies have figured out that if they combine their recipes, they can produce a very lucrative drug. But so far they have not been able to agree on which of the two companies will produce the drug and how they will share the profits.