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, March 20, 2016

Personal Update: Symptoms come and go without explanation

Since September, 2015, I have dealt with severe shortness of breath (SOB) and post-nasal drip (PND), which always waxed and waned in unison.  The two symptoms were clearly tied together somehow.  From September through January, the symptoms gradually grew worse and more frequent, to the point where they became constant companions.  By January, the symptoms were present every day.  The only variable was the severity.

I did everything I could to make sense of the symptoms.  I meticulously charted my activities, food, supplements, and other inputs, trying to isolate a variable as the cause of the SOB/PND.  I visited 4 or 5 doctors.  In the end, I found nothing.  It was frustrating.

Then in late February, they simply went away.  They're not completely gone form my life--I still get them occasionally.  But now instead of every day, I get them maybe once every 5 or 6 days.  And when I do get them, they seem less severe.

Once again, ME/CFS has proven maddeningly difficult to explain.  I have only two theories:  (1) The symptoms were yet another example of inflammatory cytokines attacking one area of the body for a while before moving on to another.  This seems to happened constantly in my experience with ME/CFS.  Or, (2) I picked up a viral respiratory infection in September 2015 that my weakened immune system took 7 months to clear.  I think the first explanation is more likely because the second doesn't explain the periodicity (waxing and waning) of the symptoms.

Now it seems the inflammation may be moving back to my nervous system.  I'm beginning to have "neuro symptoms" again--lack of coordination in the extremities along with brain fog.

I had the flu last week.  It had been going around my family for two weeks and it finally hit me.  I went to the doctor within 13 hours of the first symptoms and obtained a prescription of Tamiflu.  Then I took to the ME/CFS message boards to learn if there was any reason I shouldn't try Tamiflu.  There were some hints of possibilities of complications with ME/CFS and Tamiflu, but nothing concrete enough to dissuade me.

In the end, I think the Tamiflu helped.  Other, more healthy people, were incapacitated for a week or more with this flu.   I was done with the flu symptoms by day 3 or 4, although the flu did somehow evolve into or pave the way for a bacterial respiratory infection (like it did for 3 of my family members too.)  It was a strange bug.

So again I ended up taking antibiotics (Amoxicillin).  It seems just about the longest period I have been able to do without a serious bacterial infection requiring antibiotics, since 2011, is about 1 year.  I cannot seem to break that one year barrier.  I would very much like to avoid antibiotics but, when you need them, you need them.


  1. That is part of what is so challenging about this condition, not only do we get weird symptoms, they change with the seasons and sometimes for seemingly no reason at all. Hang in there!

    1. You're so right. Thanks StoneCutter. I wish you the same... hang in there too!

  2. Hi, I have been reading your blog for the last year or so, and just wanted to pass along
    a recommendation to read CFS Remission on WordPress by Ken Lassesen. My daughter was diagnosed with CFS by Dr Enlander in NYC and then with Lyme Disease by a prominent ILADs
    physician group. The most powerful treatments by far were GcMaf, an injectable, and also later available as an oral, probiotic. I'd check out Ken's latest discovery, Symbioflor, available through Just received an order recently, results impressive so far
    He posts on March 1 and March 4 about their products, the March 4 post talks about Symbioflor 1 which he suggests might help with the chronic cough many CFSers experience. Hope this is helpful.

    1. That is indeed very helpful. It can be so difficult to keep on top of all of the developments in the ME/CFS research and treatment world. I will check out Ken Lassesen's blog and learn more about Symbioflor. Headed there now....