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, October 22, 2018

Another Dr. C Appointment

I had another appointment with my ME specialist doctor today, who I refer to in this blog as Dr. C.  I'm going to have to keep this update brief with, essentially, bullet points only:

Dr. C states that a colleague in Belgium has developed a drug specifically to treat enteroviruses, which Dr. C said would be the big breakthrough that ME patients have been waiting for.  (This of course assumes that ME is caused by enteroviruses, which Dr. C is 100% certain of)  The drug is now in development by a European drug company, but it is supposed to take 2 years from now to finally hit the market. 

The animal testing for this drug had very good results.  It eliminated all traces of enteroviruses in the bodies of mice. Dr. C asked the inventor if it also eliminated enteroviruses in the brains of the mice and he did not receive an answer.  This is a concern.   

On a personal note, Dr. C stated that the pain under my left rib, he believes, is pleurodynia caused by the coxsackie B virus.   Pleurodynia is basically just a sharp pain in the chest, usually caused by coxsackie B.  We discussed the fact that a few years ago my coxsackie B test results showed very high titres for the B5 strain of coxsackie, and they have been dropping slowly ever since.  This is a common pattern for coxsackie B, to have the titres slowly drop back down over the coarse of about 5 years. 

I also confessed to Dr. C that I've been taking mints that have caffeine and B vitamins for a daily boost, and that I have generally felt better since starting to take them (no surprise there), but I asked if he would be concerned these mints would lead to a major collapse or crash.  He said that as long as I didn't have any side effects like heart palpitations, he was OK with me using the mints in moderate amounts (consistent with typical coffee consumption of caffeine.)


  1. Patrick -

    Thanks for sharing an update from your latest appointment!

    That's great news about the new drug for enteroviruses, which are definitely a factor for some people. Unfortunately, I don't agree with Dr. C completely and think ME/CFS is more heterogenous than that and has many different infectious triggers. But this new drug development would certainly help a good percentage of people, so that's great news!

    Glad you found something in the meantime to help a bit. I don't normally ingest caffeine, but I know it does help some, in small amounts. And the B vitamins can't hurt!

    Thanks for the update -


    Living with ME/CFS

  2. Thanks for sharing... I also have seen Dr. C in LA. I've never met a doctor who is as sure as he is about the cause of this. My titers for Coxsackie B4 were quite high but not so much the others. I've been sick since June of 2004 and like you would LOVE the prospects of a drug that can be a game changer but have lost hope over the years.

    Take care.

  3. Thanks for sharing your latest.

    Have you looked into fasting for CFS? Whether intermittent fasting, or a full-fledged water fast for a few days.