I started on this journey more than a decade ago. My goal was to find the cure – some kind of chemical drug, or supplement or herb, or hormone, or diet, of mind technique – ANYTHING – that would make me normal again. It was a thorny road to say the least, with a true night of the soul which eventually led me to the epiphany: if there was a cure, someone would have found it by now.
I realized that everybody was asserting a single level explanation based on their narrow level of specialization (it’s a virus! its the HPA axis! it’s the mitochondria! it’s the gut flora! etc), when my primary interest was to find the missing link that could build on top and bring together all of these points without invalidating any of them.
“How puzzling all these changes are! I’m never sure what I’m going to be, from one minute to another.”
― Lewis Carroll, Alice’s Adventures in Wonderland
Before I delve into specifics of my theory, I want to mention that it’s only true if you have what I have. Clearly, chronic fatigue and dysautonomia are heterogenous conditions, and part of my we can’t solve them is because we have not yet classified it well enough, so all evidence based approaches are bound to produce mixed or equivalent results.
That being said my illness has also varied over the years significantly depending on which quadrant (metabolic, endocrine, immune, or neurologic) was the most affected at any given time. However, for simplicity sake, I will outline the most consistent problems. You can use them to judge whether you recognize yourself in me. If you do, than my theory may be the right explanation for you, otherwise you answer may lay elsewhere and all I can do is wish you luck in finding it.
I should specify, is probably less than a third of my symptoms and at some point I should really try to strain my memory and put them into historical “clusters”.
1) History of high acute (IgM) antibodies to EBV virus
2) Hashimoto’s thyroiditis and fluctuating thyroid nodules on thyroid ultrasound; strong, initially positive response to T3 despite normal TSH which unfortunately did not last and with continued use led to POTS, strange body pains and depression
3) Extreme sensitivity to all medications that have any direct or indirect effect on neurotransmitters (with the exception of GABA)
4) Throat pain, ranging from burning to oppressive tightness/pressure in the throat area
5) Intermittent severe muscle tightness that alternates between upper and lower body
6) Droopy eyelids, facial numbness, lip pain
7) Labile but usually contained moods swings
8) Loss of cognitive function, in particular executive function (e.g. unloading dishwasher appears cognitively harder than reading an advanced neuroscience article because the latter doesn’t involve decision making)
9) Loss of my natural fluidity in social interactions
10) Heightened sensitivity to light, sounds and smell; generalized change in sensory processing
11) Periods of “hypoglycemia-like states” brain fog states which would be relieved with food intake; very poor tolerance to hunger in general
12) A feeling of “body anxiety”, overstimulation, “tired and wired feeling”
13) Pelvic fullness and swelling; low back pain and numbness
14) A hard to describe and extremely unpleasant feeling of nervous system blockage ( e.g. as if electricity is not able to run properly through my nerves)
15) Severe fluctuations related to my monthly cycles as well as fluctuations based on circadian cycle
16) Heightened sense of smell
On my functional medicine tests one persistent finding worth mentioning was shift toward increased byproducts of fatty acid oxidation(which Genova Labs single-mindedly attributes to abnormalities of mitochondria and either B2 or carnitine deficiency, even though B2 never seemed to make much of a difference and carnitine always made me feel worse. The other possible explanation would be, of course, a greater than normal level of fatty acid oxidation which my trace amine theory would suggest.)
The four quadrant approach to my ME/CFS has lifted me from a very dark place of feeling like I was “buried alive” to my present state where I’m able to enjoy life once again. It’s a constant balancing effect, however – because I have not found a cure but I found a way to manage my disease. I do have some residual symptoms now and then (but then so do a lot of women my age who never had ME/CFS), and my energy level might not always be at the “energizer bunny” level that I would like for it to be – but to show you the level of change in perspective, there was a time when writing a one paragraph email would take out of me everything I had. To be effortlessly writing a blog post like this with a feeling of mental clarity was a dream of mine years in the making. (If my grammar is screwed up it’s not due to the lack of clarity but because English is not my first language plus I’m too lazy by nature to edit for typos).
Because trace amine hypothesis and the treatment approach that has led me to arrive at it has made such a profound difference for me, and because I’m so painfully aware of the enormous suffering this illness can inflict on some, I feel it is my duty to share what I discovered with others who are still searching in the dark.