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

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

Monday, November 28, 2016

Latest Doctor Appointment

Last week I visited one of my doctors, Dr. M., who specializes primarily in Lyme disease but also treats other hard-to-treat conditions such as ME.  Our focus for this appointment was treating my hypothyroid symptoms.  We started by reviewing my recent laboratory blood test results testing thyroid hormone levels.  My levels of T3 (the active thyroid hormone) were optimal, while my levels of T4 and TSH (essentially, precursors to T3) were low, out of range.  Dr. M seemed concerned about this and wants to try to bringing my T4 levels within range as well.

I asked why it was necessary to bring T4 into range when T3 (the actual, active thyroid hormone) is optional.  My understanding is that, under normal circumstances, when one is not taking thyroid medication, the body produces TSH, which stimulates the production of T4, which in turn stimulates the production of T3.  (This is a bit oversimplified, as discussed below.)  So I wondered if T3 is optimal through medication, why do we need to bother with the precursors.  Why not "cut out the middle man"?

Dr. M asked me if I was still experiencing hypothyroid symptoms.  I admitted that I did still experience at least one symptom: extremely cold hands and feet.  Not just a little bit cold, but almost shockingly, painfully cold sometimes.  I had never considered this before.  Why, if my T3 levels are optimal, do I still have such cold hands and feet.

Dr. M explained that patients will still experience hypothyroid symptoms unless T4 is also brought into a normal range.  She referred me to a book called: Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian.  How's that for a specific title?  I'm not sure if I'm going to read the book, but regardless we are lowering my T3 dose and increasing my T4 to see if we can find a better balance that reduces symptoms.


Based on recent emergence and prevalence of histamine-related symptoms, we're beginning to suspect that mast cell activation may be present.  Dr. M states there is a test for mast cell activation, and we agreed that I should submit to this test relatively soon.  I plan to undergo a mast cell activation test in the next 3 or 4 months.  If the test is positive, it will be a significant clue to determining which subset of ME patients I fall into.


Finally, Dr. M suggested I consider an emerging treatment for chronic infections called Low Dose immunotherapy, as pioneered by a Dr. Ty Vincent.  This is apparently a somewhat novel approach and I'm not inclined to play the role of Guinea pig at this time.  I will probably not try this treatment.


  1. Hey Patrick I've been reading a lot of your blog recently. I appreciate your willingness to share your journey. I'm a male who came down with a strange chronic fatiguing condition when I was 36. It took me about 9months to even close to getting answers. Reading over your symptoms and your treatments I'm curious why you have not fully gone down the Dysautonomia rabbit hole. Everything you are experiencing seems to be classic postviral autoimmune POTS. Even Dr Klimas is now admitting that the autonomic nervous system is the unifying theory behind ME. It controls the immune system and all of the disparate symptoms can be accounted for by autonomic disruption.

    Have you ever tried Florinef, beta blockers, midodrine, mestinon, or any stimulant medication? I personally have POTS and initially was given the CFS ME label, but upon getting access to proper autonomic treatment I've seen a near complete resolution of my symptoms. I'd love to point you to Dr Julian Stewart and Dr Kem who are doing amazing research. They are uncovering novel antibodies against adrenergic receptors and Dr. Vernino has found them against muscarinic receptors. All the methylation, infections, and cytokines findings appear to be just noise created by the autoimmune autonomic disruption.

    1. Hi. Sorry it took so long to get back to you, and thanks for taking the time to share those thoughts. I have tried some of those medications you mention, but not all. Another commenter here has suggested that autonomic dysfunction may be the root of everything for me. While I've explored that a little, I haven't gone completely down that "rabbit hole." Perhaps its worth looking more into. There are just so many directions you can go!

      Where can I read more about Dr. Klimas' comments about autonomic dysfunction being the root of everything?

    2. Hi again. I have some additional questions I would like to ask you, and another commenter (to my next post) asked if there was a way to get in contact with you directly. If you are comfortable with it, could you let us know how to get in contact with you?

    3. You can find me on Twitter @shanesmith or on FB/shanesmith0. I'd love to talk with you more about it.

  2. Here on some of the most important breakthrough studies in the past 2 years. I think in 90+% of cases we're talking about ME/CFS being an autoimmune autonomic syndrome either through antibody/cytokine neuropathies, modulating/activating/blocking antibodies, or a combination of both.

    I've heard from many clinicians that they are seeing good responses to IVIG, plasmapheresis, rituximab (in extreme cases), and by modulating the immune system in men through TRT. Getting men in the upper normal range for T has a lot of potential benefits to suppressing autoimmunity.

    There is a lab in Germany that can run a panel for the Alpha and Beta antibodies as well as the Muscarinic antibodies.

  3. Thanks for info. How did you get cell trend tests run...can quest or lab corp take blood and ship it there fast enough. what kind of treatment are you on? ivig?

  4. I wouldn't bother with LDI; it's nothing more than homeopathy.

  5. There's a great book that was published last year by Dr. Larry Afrin called "Never Bet Against Occam." You can get it on Amazon. He's an expert on mast cell disorders which is a TH2 dominant condition. Almost everyone I know with MCS and ME who got tested turned out to have mast cell activation syndrome. In my case, I believe it is a compensating mechanism. I have an interleukin receptor mutation which keeps me from fighting viruses properly. All my antibodies are high, but I can get the same viruses reactivating over and over because I don't make B memory cells.

    It took years of immune and DNA testing to finally sort out all the issues. We still have one last mystery to solve having to do with the last stage of NK cell function. Cincinatti Children's Hospital has some new tests that are fascinating and helping doctors understand better why some people can't finish off a virus or knock out cancer. When you can't respond properly with the high-powered immune attack, it's like fighting a war without air strikes. So your only option is to send in loads of ground troops and that's basically what mast cell responses are doing. They're trying to protect your weak spots but in doing so, they also cause some collateral damage. If I try to suppress my TH2 responses too much with antihistamines or other mast cell degranulation suppressors, then I get relapses of viruses like EBV.

    23andMe testing was very helpful for finding some of the clues - you can run the raw data through Promethease or investigate candidate genes for various mutations related to immune dysfunction which is what I did. However there's a new company called Genos that is doing whole exome sequencing of 20,000 genes plus a Promethease report for only $500. That is incredible. It will catch things like mitochondrial diseases, genetic immune disorders, and thousands of conditions that have been documented to be associated with particular mutations. I think it's by far the best screening. Of course many conditions are acquired, but I believe there is a strong genetic component for ME and this may help give you some pieces of the puzzle.

    If you haven't had a full immune workup, I can give you a list of tests that were very beneficial for my family. My doctor said IVIG would not help in my case...I make antibodies and have normal serum complement and immune globulins. And IVIG will generally push you even more toward TH2 dominance.