Summary of 5th Appointment with Dr. C

I had my 5th appointment with Dr. C today.  For those that don't follow my posts about Dr. C, he is one of the most respected ME/CFS specialists on the West Coast.  And I say that, not to try to impress anybody, but just to make clear that Dr. C is not a typical PCP who knows nothing about ME/CFS.  He is constantly researching it in the laboratory and publishing findings.

We first reviewed the fact that my experiment with the drug Rifampin had failed.  If it had worked, I was supposed to experience a strong flu for several days--indicating that my immune system had kicked into gear--after which I would supposedly feel better.   Instead, it just caused me to crash, starting about two weeks after I had finished taking the Rifampin.  The crash lasted for about 3 weeks, which is one of the longest crashes I have ever had.  Dr. C said that he has had a few other patients (out of more than 70 who have tried Rifampin), who have had these delayed crashes starting 2 weeks after the Rifampin.  To be fair, I don't know with certainty that the Rifampin caused my severe crash, but I can't think of anything else that might have caused it.

With that, Dr. C admitted that he was "out of tricks."  So to review, the first treatment we tried, Equilibrant, worked and continues to work.  I still take 6 tablets of Equilibrant per day.  It shortened my crashes and made them less frequent.  While it didn't make the high's any higher, it made the lows less low and less frequent.

After that we experimented with a number of other drugs & supplements that Dr. C often prescribes in conjunction with Equilibrant, including Inosine, Amantadine, and Rifampin.  The purpose is to trigger the patient's immune system into shifting back toward Th1.  None of them worked.  Dr. C concluded that I'm going to have to wait until we have better drugs to treat ME/CFS.  Since I'm classified as "moderately ill," I'm not eligible for (nor would I want to take) more advanced treatments like interferon and IVIG.  So I'm now on Dr. C's extended appointment calendar, where my appointments will be spread out by at least 6 months to give time for new research developments to happen in between appointments.  Now my next appointment is scheduled in late December.

Dr. C stated that there is a well-known drug manufacturer who, within the last year, hired an enterovirus expert.  He believes they are working on a drug that is specifically targeted toward RNA strand enteroviruses (which Dr. C says is the cause of ME/CFS).  He believes, with time, an effective drug will be developed to combat ME/CFS, but how long that will take is anyone's guess.

Another thing that struck me about our discussion is that Dr. C is absolutely, 100% convinced that ME/CFS is caused by an enterovirus, and he seems to have a small chip on his shoulder about it (in his own, understated way).  At one point he said that he has proved that enteroviruses are the cause of ME/CFS and he seemed almost exasperated that the rest of the ME/CFS medical community hasn't fully recognized his research.  This will be interesting to follow...

Finally, our appointment concluded, as it always does, with a quick physical examination.  Dr. C noted that my left lymph node is swollen.  Swollen nodes are of course common among ME/CFS patients, but I no longer even notice it.  He also noted that the left side of my tongue is swollen in the back, also the result of immune system (Th2) activation.  Since I was feeling pretty decent today,  I was a little bit surprised by this.  It was a good reminder that even when I'm at my baseline and the only symptom I have is fatigue (like today), there are other symptoms that can be physically observed by a doctor even if I no longer even notice them.  I have simply gotten used to living with these discomforts and they are now simply a part of life that I hardly pay any attention to.