Dr. C Recommends New Treatment Plan

I had my latest appointment with my ME/CFS specialist, Dr. C, on Friday.  My appointments typically open with the nurse running through a questionnaire that's designed to gauge how my symptoms have changed since the last appointment.  I mentioned the prostatitis (as discussed in my prior 5 posts).

Treating Acute Inflammation

When Dr. C entered the room, he zeroed in on the prostatitis.  We reviewed that I've been taking a variety of antibiotics for over 45 days without any lasting improvement.  He said the prostatitis is probably, in his opinion, a result of ME/CFS -- not bacterial.  Specifically, the virus is attacking tissue in the prostate.  He says he has several other male patients who have these same symptoms and that urologists typically have no idea how to treat prostatitis when it is not bacterial.  The urologists are completely stumped by viral prostatitis.  (This is consistent with what I've read on the Prostatitis Foundation website).

Dr. C recommended that I try a new course of treatment involving a combination of Interferon shots and Prozac for one month.  The interferon shots would be self administered, from a sample vial that Dr. C is willing to give to me.  (Normally interferon is $600 per dose).  I would split the one dose that he is giving me into 3 or 4 smaller doses and take them each a week apart.

At the same time, I am supposed to take 4 weeks of Prozac (yes, the antidepressant), which Dr. C states has an off-label use as an anti-viral medication that works against the Cocksackie B-3 virus (according to researchers at UCLA and others).  Apparently Prozac inhibits the ability of viruses to bind with the enzyme that they need to replicate.  They are also using Prozac now for Hepatitis C treatment.

For reasons that Dr. C did not fully explain, he stated that neither Prozac or Interferon alone would inhibit viruses significantly, but in combination, they have a synergistic effect.  He states that he has personally observed these two drugs inhibiting viruses through his own experiments.  (The details of this weren't clear).

Dr. C only offered Interferon to me because of my prostatitis.  Dr. C stated that as soon as one stops taking Interferon, the virus returns to its former strength.  Thus it is not a good long-term solution to ME/CFS, especially given the prohibitive cost of doing "maintenance doses" of Interferon.  But when one is dealing with an acute symptom like prostatitis, it can sometimes be helpful to try Interferon for a short time to see if one can bring runaway inflammation under control.

I haven't fully decided if I will try the experiment, but I think that I probably will.  It would be very difficult for me to turn down this opportunity at a free sample.  The only problem is that I have too many key work responsibilities to handle in the month of October.  Dr. C warned that Interferon can make a person feel awful (more than usual for ME/CFS patients) for the first few days after a new dose.  Among other things, it causes chills and high fevers.  (I'm supposed to take high dose Advil an hour before each dose of Interferon to help counteract these side effects.)  I can't afford to be out of commission for at least another 2 to 3 weeks.  So I think I will postpone the experiment until November.

If and when I do try this treatment, Dr. C thinks the treatment has a reasonable shot at alleviating my prostatitis pain.  If it helps, I am supposed to report back and, if he has any more samples, he will give me a second dose. The mere possibility of relief is exciting to me right now.

General ME/CFS News From Dr. C

Hepatitis C Drugs

For years Dr. C has been awaiting the arrival of two antiviral drugs that were in development for Hepatitis C.  He had strong hopes that the antiviral properties of these drugs would also be effective against the enteroviruses that (he believes) cause ME/CFS.  One of those drugs finally hit the market recently and has been tried on a few patients who have both Hep C and ME/CFS.  The drug was successful in treating the Hep C but did nothing against those patients' ME/CFS.

The other of the two Hep C drugs in development is supposed to hit the market next month.  It will similarly be tried on patients who have ME/CFS and I'll know the results by the time of my next appointment in March.   

"Exciting Time"

Dr. C described this as an exciting time in ME/CFS research.  He said we are getting closer and closer to understanding the double strand virus that causes it (or so he believes).  "There is a way to get rid of this," Dr. C said, "we just don't know quite yet.  But we're getting there."

Samples Sent to the CDC

Three weeks ago, Dr. C finally sent stomach biopsy samples (about 30) to the CDC at the CDC's request.  He has been trying to convince the CDC to try to re-create his findings for years.  No word on how long it will take to get results from the CDC.  Just after he sent the samples, Dr. C received a letter from the CDC stating that the testing of his samples will be delayed because the CDC is suddenly being inundated with requests to do something about the Enterovirus D68 epidemic.  

But, Dr. C seemed more encouraged than discouraged by the delay caused by Enterovirus D68.  He says that this new Enterovirus D68 epidemic has brought more attention to enteroviruses in general than he's ever seen in his career.  He thinks this may funnel large amounts of interest, money, and resources into enterovirus research, which has been largely ignored up until now. 

Dr. C also explained that California Senator Barbara Boxer has recently taken an interest in Enterovirus research because of the cases of paralysis from Enterovirus D68 that occurred at Stanford Medical Center.  He is circulating a petition to be sent to Senator Boxer to encourage her to push the NIH toward further research into the chronic effects of enteroviruses.  (She has already written one letter to the NIH).  His concern is that interest in the acute affects of enteroviruses won't translate to interest in the chronic affects.  He wants to piggyback on the momentum created by the acute affects of D68 to generate interest and research into chronic enteroviral affects.    

What Strains of Enterovirus Cause ME/CFS?

With all the news coverage generated by Enterovirus D68 recently, I had been wondering whether Dr. C had ever identified, specifically, which enteroviruses he believes cause ME/CFS.  I couldn't believe I've never thought to ask him this before. 

His answer:  "Most commonly, the Cocksackie B viruses: B-3 and B-4.  Then probably Cocksackie 2,  Echovirus 6, Echovirus 7, Echovirus 9, and then much less: Echovirus 11."  He also said "there's a whole bunch of these guys we can't identify."  

(Interestingly, I have been tested for Cocksackie B twice.  One test was positive for B-3 but not B-4, and the other was positive for B-4 but not B-3.  This doesn't give me a lot of confidence in these tests.)