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

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

Sunday, October 12, 2014

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.)


  1. This is fascinating and thanks for sharing :) What about Thanksgiving obligations with family?

    I wonder if there is a connection between the recent enterovirus outbreak in Southern CA and the ME/CFS enteroviruses ("Cocksackie B viruses: B-3 and B-4. Then probably Cocksackie 2, Echovirus 6, Echovirus 7, Echovirus 9" as you'd mentioned) --could you ask Dr. Chia at your next appointment? I am curious whether the interferon/Prozac combination would have been efficacious treatment for those children. It seems like ME/CFS treatments could really help others and I always think that many cutting-edge ME/CFS supplements and treatments that don't necessarily work with predictability given our complex multisystemic illness could annihilate common ailments for "normal folks." Recently, Liposomal Vitamin C (dose 2 packets/day) worked for my mom with a 2 week sinus infection and otherwise healthy immune system, and she immediately bounced back. It was like a miracle drug . :-) Simultaneously awesome and very frustrating that healthy people get better quickly while we remain chronically ill after investing a fortune on state of the art supplements, antivirals, and various treatment modalities.

    Best of luck with interferon! Thanks so much for updating! Appreciate it.

    1. HI Epiphany_2015 (you're from the future!). I didn't specifically ask Dr. Chia that question but I can tell you generally from our discussion that he would probably say there there is little to no connection between D68 and the enteroviruses that he believes cause ME/CFS--if I understand your question correctly. But that's just speculation - I don't really know if the Interferon/Prozac combination would work for someone with D68. I did note however that the packaging and instructions that come with Interferon say that it is not to be administered to anyone under the age of 18. Not sure why.

    2. Very cool!! I wonder if they're potent immunomodulators and therefore can't be administered to <18 aged patients. How's the trial of interferon and Prozac going?

    3. I haven't started the experiment yet because there's too much going on at work right now and I wouldn't be able to handle having a sever flu right now (a side effect of Interferon). I think I might start late next week after I take a deposition on Wednesday of that week.

  2. Patrick,

    Thank you for continuing to post about your ongoing treatment and doctor appointments. It is very helpful and informative for other patients and it is appreciated.

    Regarding the last part of your post, keep in mind it's entirely possible that you caught both B3 and B4. Going back to Chia's research, he found that patients tested serially for enterovirus RNA by PCR over a 24 month time span would fluctuate between positive and negative. I have to imagine that neutralizing antibody titers fluctuate in response to the presence of this RNA in the blood as well.

    1. Thank you, Halcyon, I was not aware of that. It makes a lot of sense then why the test results would vary.

  3. Hey Patrick, thanks for keeping us up to date on this. As you may remember my biopsies came back very positive for chronic enterovirus from Chia's lab. And one of my doctors here in Ontario, Byron Hyde is a strong proponent of the eneterovirus/ME connection.

    What dose of Prozac did he recommend?
    I wonder if included that with say Equilibrant or valtrex if that would have any effect. Either way I remember reading that Klimas once said that Prozac alone can increase NK cells and function.

    Thanks again,

    Yorke (Adam)

    1. Hi Adam. I am currently on both Equilibrant and Valacyclovir, so i guess we'll find out the answer to your question if/when I do the Prozac/Interferon.

      That's really interesting what Klimas said about Prozac and NK cells. This makes me more interested in going through with the experiment.

  4. I'm curious as to why you're on valtrex. Is it just prophylaxis or does your bloodwork indicate ongoing infection? Or do you just feel better and more functional being on it than off?

    1. Adam, it is a combination of all three reasons you guessed. My other ME doctor (not Dr. C) recommends it and I have found that it seems to be effective.

  5. Ha. My first test was positive only for coxsackie B4 and B5 and my second test, which was THREE DAYS LATER, was high for all coxsackie As and Bs but B3 and B4. I don't trust those tests, either.