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

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

Thursday, April 28, 2016

My Latest Doctor's Appointment - Trying New Treatments

I had another appointment with my integrative medicine doctor yesterday, Dr. M.  Since my last post in March, the shortness of breath (SOB) and post nasal drip (PND), which I thought had finally gone away, came back.  But in the meantime, some very interesting clues arose suggesting a possible cause of this frustrating set of symptoms.

In early March, I became sick with a very bad cold, the main symptom of which was a hacking cough.  I coughed so hard I strained the ligaments in my ribs, making further coughing painful. During the 10 day span that I had the cough, I didn't have any SOB or PND.  (That's when I wrote my last blog post.)  A couple of days after the cough resolved, the SOB and PND returned.  Then, because of my weak immune system, the cough returned for another week, and the SOB/PND went away.  Then this cycle repeated a third time!  It was almost the perfect cause/effect experiment.

That brings us to present day.  I stopped coughing again about 3 days ago, and the SOB/PND returned again yesterday (the day of my appointment with Dr. M.)

But there's more...

I noticed that, very often, when I do something that should be good for my immune system, the SOB/PND becomes triggered.  For instance, nearly every time I take a zinc lozenge (but not always), the SOB/PND becomes worse immediately.  The connection with zinc is unmistakable.
Also, about once every two weeks, I am suddenly and for no discernible reason, able to catch an extra good night of sleep.  I will sleep maybe 9 or 10 hours and wake up knowing, feeling, that it was an extra deep sleep.  It's a hard feeling to describe, but it's unmistakable when it happens.  The strange thing is, these nights of "power sleep" are always followed by a bad day of SOB/PND.  This seems very counter-intuitive because sleep is supposed to be good for the immune system.

All of this leads me to believe that the SOB/PND is some sort of over activation of the immune system — an allergic or autoimmune-type response.  It's as if my immune system almost has to be stressed a bit in order to avoid SOB/PND, or in the case of my recent cold, to be "distracted" by something else.

When I explained this theory to Dr. M, she neither supported it nor rejected it.  She was simply pensive, and acknowledged the possibility that there could be something accurate in my theory (or perhaps she didn't want to hurt my feelings.)

As I've written before, Dr. M believes, foremost, that I have chronic Lyme disease and chronic babesia.  I've discussed my skepticism of this diagnosis with her and she understands.  At the same time, I can't completely rule out her diagnosis.

One of the hallmarks of babesia infection is cyclical SOB, like I have.  Dr. M has previously raised the possibility of me taking an anti-babesia medication called Mepron, but I have always demurred.  This time, after researching Mepron and understanding more about its side affects (mild) and risks (minor), I agreed to try it for 1-2 months to see if it will help decrease the SOB/PND.  So that is the current plan.  I will fill the prescription this weekend.

We are also in the process of decreasing my daily T3 thyroid dose.  My previous doctor had increased the dose so high (75mcg) that my body nearly ceased all natural production of Thyroid Stimulating Hormone (TSH) and T4 (thyroid hormone precursor).  Dr. M wants to decrease T3 to the point where TSH and T4 begin production again.  We've already decreased T3 from 75 to 40 mcg. and I still feel fine.

Dr. M also wants me to increase my infrared sauna usage from 1-2x to 3-4x/week for detoxification.  (ME/CFS patients are thought to have broken or defective detoxification pathways.)  Although I once used my sauna almost daily for an 8 month period, right now I simply don't feel like I have the patience to increase my usage back to 3-4x per week.  I will try nonetheless.  She also stressed the importance of continuing to take Phosphatidyl Choline, which I will.


  1. Thanks for sharing your story. Given your shortness of breath issues, I'd highly recommend you see a Cardiologist and do an stress echo test. Many people with CFS have heart issues as well. I myself was diagnosed with weak heart muscles (global hypokinesis) and low Ejection Fraction (35%). They put me on a couple of medications which I hope will improve heart function and my SOB (Dyspnea).
    I really wouldn't spend too much time worrying about Lyme. Chronic Lyme is another one of those over diagnosed things these days given its ambiguity.
    Good luck!!

    1. Hi, thanks for your comments. I have seen a Cardiologist and done the stress test. Recently I went back to a cardiologist for more types of testing on my heart and they ruled out any problems with my heart. That was a relief, but also another frustration in the quest for answers. Nonetheless, the information you provided is valuable, and I hope it will help others.

      I generally agree with your comments on Lyme.

    2. I learn so much from your blog. Thanks and sending you the very best for healing.