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, April 24, 2018

Appointment with Dr. C

I had my latest appointment with Dr. C, a well-known ME specialist in California, yesterday. 


The conversation quickly turned to SIBO because of the abdominal symptoms I reported to the nurse.  Dr. C said SIBO is a very serious problem for a large number of his patients.  He states that the enteroviruses which he believes causes ME often take up residence primarily in the GI tract.  When this happens, the viruses can shut down the functioning of the autonomic nerves which regulate the waves of contraction (migrating motor complex, or MMC) which normally push food through the small intestine.  The food then stays in the small intestine for too long, essentially stagnating, which leads to the overgrowth of bacteria in the small intestine.  Most of this information was already known to me--it is covered in SIBO books and websites--except for the theory that enteroviruses are the cause of the failing MMC.

Dr. C essentially said that SIBO was only recently discovered and there is no definitive cure (again, something I knew but was interesting to hear from a real, live person).  He has had some patients who couldn't pass BMs for two weeks at a time.  He said that sometimes he prescribes azithromycin, not because of its antibiotic qualities, but because a side effect is that it causes diarrhea.  Dr. C in fact prescribed me three weeks of a Z-pack.  Frankly, this sounds like a temporary solution to the low motility problem and I'm not sure if it would be worth taking antibiotics unnecessarily.  I don't think I will fill the prescription.  [4/26/18 edit: I changed my find after coincidentally reading about low-dose Z-pack as a motility solution for MMC issues in SIBO the day after the appointment.]

As an aside, Dr. C also mentioned that his SIBO patients who qualify for IVIG tend to become regular for the first two weeks after their IVIG infusion.  Somehow the correction of the immune system triggers the MMC to reactivate for a couple of weeks.  

Dr. C also wonders whether, after they find a cure for ME, patients' GI tracts will return to normal function or if the nerve damage is permanent.  He said that he suspects it will return to normal but he may have been saying that because of the worried expression on my face.  

Other Treatments

It is rare for me to visit Dr. C and not walk away with a new treatment to try, but at this time he is out of ideas for me (except to give dihydroquercetin another try).  He did however, give a run-down of the promising leads in ME treatment research in general.  Dr. C said that four or five drug companies are all working on retro-viral drugs currently and that this area of research is a "hot new topic" for drug research, or words to that effect.  (He gives some version of this same speech each time I visit, and I understand that the process of researching and developing ARV drugs is very slow, so I take it with a grain of salt.)  He also said that anti-viral drugs can be specific to a certain type of virus, giving the example of a Hepatitis C drug that only works for Hep C and not Hep B or HIV or anything else.  Presumably the drug companies are working on something more broad spectrum, or else what are the chances their work will help ME?

Usually when Dr. C mentions other ME researchers, he does it to contrast his theory with theirs, explaining why he thinks he will be proven correct (not them).  This time, however, he gave high praise to the work of Ron Davis and Mark Davis and their work to reactivate T-cells.  (This was discussed in a Health Rising article in December, 2017).  He thinks their work could be a big breakthrough for us.  

Personal Exam

As usual, Dr. C noted that my lymph nodes are swollen (he was surprised they didn't hurt) and my throat looks red and raw.  I've had these chronic issues for so long I don't even notice them any longer.  They are truly the least of my concerns and in fact I forget they are even there. 

When Dr. C first walked into the examination room he immediately said, "you've lost weight."  I hate to hear that because I feel like I'm getting too low, and it was scary to think that a person who sees me only twice per year could tell immediately. I've only lost 10 pounds since I last saw Dr. C, but apparently it was enough to be noticeable.  I really need to update the picture of my face on my blog because I look nothing like that anymore.  

Overall, I came away from the appointment feeling disappointed.  Of course, all of us in the ME community know that even if they find a cure, some of the damage that ME has already done to our bodies may be irreversible.  This is mentioned from time to time on message boards.  I know it's true but I try not to dwell on it.  Hearing it from Dr. C made it seem very real and that saddened me.