You cannot connect the dots looking forward. You can only connect them looking backwards.
— Steve Jobs
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. (I have preserved some of my original posts that I wrote in the early stages of my disease before I abandoned this site but promised myself that one day, when I actually have something worthwhile to say, I will return to it). It was a long and thorny road, to say the least, with a profound “dark 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.
Before I delve into specifics of my theory, I want to mention that it’s only going to be true for you if you have what I have. Clearly, CFS and POTS are both heterogeneous illnesses, 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.
After 10+ years 15 years of self-experimentation, this is the best and most unifying way I could reconcile several important observations about myself:
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, later in the course of the illness alternating and oppressive tightness/pressure in the throat area
5) Intermittent severe muscle tightness that alternates between upper and lower body
6) Slightly droopy eyelids, facial numbness; lip numbness and tingling
7) Labile but usually contained moods swings, similar in description to bipolar
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 fluidity in social interactions
10) Heightened sensitivity to light, sounds and smell; generalized change in sensory processing
11) Periods of “hypoglycemia-like states” which would be relieved with food intake
12) Body anxiety, overstimulation, “tired and wired feeling”
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.)
For a long time I was convinced that there was something wrong with my mitochondria. In 2016 two major studies came out that played a big part in the construction of my world view about my illness. The first one was metabolomics study of ME/CFS patients by Naviaux team published in PNAS. It revealed that ME/CFS patients had a metabolic state called “dauer” which was similar to the one found in hibernating animals, and actually quite opposite of the “metabolic syndrome” associated with obesity and found to some degree in the majority of population. The study authors hypothesized that an infection might have something to do with this state but they couldn’t provide a specific mechanism that would be involved with it.
The second study was what became known as the Stanford Study Paradox
that looked at the mitochondria of ME/CFS patients and found contrary to what was expected that they were not only normal but on average functioning at a greater capacity that mitochondria of normal people.
Therefore, we now knew that ME/CFS was an illness that involved a state similar to hibernation which was not directly related to the energy production by mitochondria, and could be potentially triggered by a viral infection.
If I went out searching for a mechanism that would fit the criteria, I’d never find it. It would be like searching for a needle in a haystack, especially for someone who only had a college level understanding of biochemistry and neuroscience.
But it just so happened that I while I was on my 10,000 + hour of reading the “wrong” medical articles, the trace thyroid amine hypothesis fell into my lap by an accident, and I recognized it the way someone recognizes the criminal suspect whose sketch they have seen on TV. In a way I simply got lucky, but as the ancient philosopher Seneca put it “luck is what happens when preparation meets opportunity”.
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.