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, October 27, 2015

Cutting Some of My Supplements Was a Mistake

In July, I wrote that I had cut back on the number of supplements I was taking.  It was part of a plan I'd been working on with my new doctor (Dr. M) to eliminate any supplements that I didn't feel certain were significantly helping.  This would save money and, possibly, liver function.  I had already started cutting some of the supplements several months before that July post.

Beginning in about June and continuing all the way through the end of September, I started experiencing swollen and tender lymph nodes on an almost daily basis.  I wrote about this in late August in a post called A New Phase of My Illness.  I felt generally more weak and tired when this lymph node swelling would occur, and the monthly averages of my daily health ratings were among the lowest from the prior 24 months.  It was clear that I had taken a step back, health wise.

I don't know why it took me so long to make the connection, but in late September, I searched through my daily health chart for changes near the time of the onset of the lymph node swelling and related symptoms.  It was a week or two after I had cut a supplement called ImmunoStim. ImmunoStim is a private label concoction offered by one of my old doctors (Dr. W) and his, frankly, rather corporate medical practice.  It's a sort of all-in-one combination of many of the usual herbal immune stimulants and modulators:  Beta glucans, olive leaf extract, maitake mushroom, and others.

So I re-ordered ImmunoStim and within a week of going back on it, the lymph node swelling went away.  Rarely has anything with ME/CFS been so clear and straightforward.  I had completely underestimated how much my compromised immune system needs that particular supplement.  So I'm back on ImmunoStim indefinitely.


Unfortunately, the respiratory issues that I wrote about in the A New Phase of My Illness post are still a problem and actually, I think, might be getting worse.  I'm suddenly feeling very motivated again to start visiting doctors and seeking answers to this problem.  It's obviously not going away on its own like some out-of-the-blue symptoms do.  I'm working with Dr. M (the LLMD) but I'm going to "dual track" this search and pay a visit to my good ole Primary Care Physician.  She's a great doctor, although she's been of very little help to me since getting ME/CFS.  But, on this respiratory issue, I have a hunch she might be able to point me in the right direction.  At the very least, she's good at referring to the right specialist.  I have an appointment with her on Thursday.  

Tuesday, October 6, 2015

Negative for MARCONS, positive for Staph

One of my doctors (Dr. M) and I have recently been trying to figure out why my two strongest symptoms over the last six months have been nasal congestion and shortness of breath.  These two symptoms always flare up together.  It's as if inflammation hits both areas (sinuses and lungs) at the same time, and usually lasts for 24-48 hours before abating.  Even when it is abated, my lungs always seem to have a slight feeling of air hunger these days.

Dr. M gave me a nasal swab test.  (This involved sticking a Q-tip up my nose "2 to 4 inches"!)  She was looking to diagnose exactly what kind of bacteria had taken up residence in my nasal passages. In particular, she was looking for MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococci).

A few minutes ago I received a call from my doctor's office stating that I am negative for MARCoNS but "positive for other Staph infection consistent with mold exposure."  It was the office manager calling to give me this information, so it's not clear if the conclusion that the results are "consistent with mold exposure" actually came from my doctor.  For reasons that are too complicated to go into in this post, I have always been skeptical that biotoxins play a role in my illness.

My next appointment will be interesting because I'm very curious to see where Dr. M wants to go with my treatment plan.  For the most part, the first year I've been with her has been focused on various diagnostic tests.  We haven't even gotten to a treatment plan yet!