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

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

Tuesday, March 12, 2013

Summary of 4th appointment with Dr. C

The great thing about appointments with Dr. C is that he always gives hope for the future. It seems he and his team are constantly working on solutions to ME/CFS, for which he's usually very excited (in his own, understated way).  For instance, today he mentioned that, since March of 2012, he and his team have been going back over drugs that are already in existence and testing them, in a Petri dish, for anti-viral properties.  He said there have been many early, encouraging results, but these drugs won't be ready to try on ME/CFS patients for some time (unspecified).

He also said that there are two new anti-viral drugs scheduled to arrive on the market in the next couple of years that he believes will greatly benefit ME/CFS patients, although he cautioned that one of the drugs will be very expensive ($10-$20,000 per month!).

My overall impression from this appointment was that, while viruses cause ME/CFS, each of us responds differently to treatment because we have different viral loads. It seems that successful treatment is about finding the right combination of antivirals to address each individual's viral load.  (This is my interpretation of the "theme" of Dr. Chia's explanations.)


We first discussed the fact that I had tried adding Amantadine to my usual regimen of 6 Equilibrant tablets per day, but that, after a month's trial, I saw no improvement.  He was not surprised and made a comment later that seemed to indicate that Amantadine may be falling out of his favor.  (For a full explanation of why we tried Amantadine and Epivir, see this summary of my prior appointment.)


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.


Dr. C then said that he has one more"trick" he can try—one more drug to try adding to Equilibrant—to induce the desired response from the immune system. It's actually an antibiotic called Rifampin. He explained that Rifampin seems to also have anti-viral properties and has worked on quite a few ME/CFS patients when combined with Equilibrant.

When it works, the patient usually feels strong flu-like symptoms within a week or two after starting the Rifampin. After the flu-like symptoms resolve, some patients find that their immune systems have cleared much or most of the viruses.   However, a patient only gets one shot at this treatment. If a patients starts the treatment and does not finish it for any reason, the virus will never respond to the Rifampin if taken again in the future.

Rather than try to remember everything Dr. C said about Rifampin, I have attached an informational handout Dr. C gave to me. (Click the image at the bottom of this post) It appears to be a summary of a presentation he gave at the 2011 IACFSME meeting in Ottawa.  The copy below may be difficult to read as a JPG image.  If you prefer, I can email a PDF version.

If Rifampin doesn't work , Dr. C said the he would probably have new antiviral medications to try at my next appointment in early July.

Different Equilibrant Treatment Progressions

I asked if viruses can adapt to Equilibrant, causing the Equilibrant to lose it's effectiveness   He said yes, it is possible.  For those who respond to Equilibrant he sees three different trajectories.  There are some who begin a steady climb upwards until they are in remission, which he illustrated by a straight line (on an imaginary graph) going steadily upward at a 45 degree angle.  

Other patients improve by about 10 to 40 percent, but then reach a plateau.  (So far, this describes me). The goal for those patients is to find another immune modulator or antiviral drug that will compliment the Equilibrant and bring the patient all the way to remission.  Otherwise, this group continues on the plateau or falls to the third group...  

Finally, there is third group that initially sees a 10 to 40 percent improvement, but then eventually returns down to their previous level of ill health.  He said that most of these patients contract another virus which precipitates the downfall.  In other cases, the person becomes too active too fast after experiencing improvements from Equilibrant, leading to a permanent decline.  

I am slightly concerned that I may end up in this third group given that I live with a germ factory (soon to be two germ factories) known as pre-school age children.  My goal will be to have the best hygiene as reasonably possible when dealing with my kid(s), without becoming a neurotic germ freak.  

Pro-Inflammatory Versus Anti-Inflammatory

I next asked about something that has been confusing me since my first appointment.  When Dr. C explained the Th1/Th2 immune imbalance, he said that the Th1 side of the immune system (the side in which PWMEs are deficient) is the pro-inflammatory side.  He said that Equilibrant will shift the immune system toward a pro-inflammatory response. 

This has always confused me because much of the the literature on ME/CFS focuses on anti-inflammatory treatments. Whether it's diet or reducing pro-inflammatory cytokines, the literature focuses on reducing inflammation, not increasing it.  

Dr. C explained that I was talking about unrelated kinds of "inflammation."  The details were a little hazy, but the take-away was that there is no need to worry about an anti-inflammatory diet working against Equilibrant.  

My Lab Results

For the second month in a row, my lab results show macrocytic anemia (high MCV), now joined by high MCH as well.  Both are barely high (100.4 and 33.8 respectively).

I was about to write that these results, once again, indicate a need to return to a vitamin B12 protocol (which I'm working on.)  But as I was writing this, I quickly consulted Google for additional information about High MCH.  As I typed in "High MC..." Google showed results for "High MCV valacyclovir."  This caught my attention because I am taking valacyclovir.  It appears now that my macrocytic anemia may be a side effect of the valacyclovir.  

Once again, I'm reminded of the complications that arise when one takes a multitude of prescription drugs and supplements.

If you're interested in reading more reports of appointments with Dr. C, my friend Chris McLaughlin has started what will become a series of posts on her appointments with Dr. C, hosted on Cort Johnson's website.  The summaries of my past appointment with Dr. C can always be found by clicking the "Equilibrant" label in the right margin of this website, or by clicking here.  
You can click to enlarge this image slightly.  It you still find it unreadable, I might be able to email the original to you. 

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