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ONE ILLNESS, MANY NAMES

“Doctors put drugs of which they know little into bodies of which they know less for diseases of which they know nothing at all.” – Voltaire

The ancient Indian parable of the blind men and an elephant is often quoted by functional medicine practitioners and spiritual teachers alike.

Once upon a time, there lived six blind men in a village. One day the villagers told them, “Hey, there is an elephant in the village today.” They had no idea what an elephant is. “Hey, the elephant is a pillar,” proclaimed the first man who touched the elephant’s leg.

“No”, objected the other who was touching the elephant’s tail,”the elephant is like a rope”.

“Both of you are wrong” argued the third one, who was touching the trunk. “Clearly, the animal is a big snake!”

And so they all argued, not knowing that the elephant was all of these things at the same time.

Dysautonomic illness spectrum that includes symptom based diagnosis such as ME/CFS, POTS, Multiple Chemical Sensitivity, fibromyalgia, adrenal fatigue, atypical depression –  they are multiple incarnations of the same illness. (In all likelihood, much of chronic Lyme and Gulf War Syndrome also fall somewhere on this spectrum but at this point I haven’t studied those conditions so I can claim that with enough certainty). After more than a decade of exploring this animal through external and internal means, I’m finally starting to realize what the elephant really is, even if just like blind men I’ve never seen one before. The elephant in this case is the resulting vicious cycle of complex neuroimmunoendocrine dysfunction related to dysregulation of trace amine receptors.

I should add that there is another condition that few people seem to realize falls on the same spectrum which is  bipolar 2 disorder. which doesn’t have manias and which most experts now agree is caused by a completely different neurological mechanism than bipolar 1, in fact so much different that many believe it needs to be renamed into something else. Instead of mania, people with bipolar 2 get hypomanias which is what they personally would probably descire as  “really good days” followed by very long periods of depressed mood. As the disease progresses, the good days become far and few in between while depressive states become the norm, and most of them develop severe cognitive dysfunction (a.k.a brain fog) leading to disability.

When one really takes time to study the true clinical presentation of bipolar 2 it becomes painfully obvious that it falls on the same spectrum as ME/CFS type disorders with the only difference that the state is more strongly tainted by depression rather than low energy, but both symptoms are invariably present, it’s ultimately the balance between the two – which might be partially determined by one’s own perception – that might determine the diagnosis.

While, I clearly strongly resent the fact that traditional medicine has for decades shrugged off our physical complaints as “psychosomatic” – an attitude that can be described condescending, presumptuous and ignorant – I also believe that people with ME/CFS have done themselves a disservice by completely shunning our close ties to the neurological condition known as depression in order to be taken seriously. It is quite possible that we have thus excluded the medical specialty that was perhaps in the best position to help us.

There are two reasons why this happened. First one, is because with CFS are aware that they have a severe bodily dysfunction, they feel that focusing on their psychological issues will only detract from pursuing the real cause. The other reason is that psychiatrists, being highly specialized like any other medical profession, don’t like treating people who have physical disorders, because they don’t really know anything about physical disorders and it makes them uncomfortable. There is certainly a good rationale to this fear given that psychiatrist dose their medications based on evidence based studies that have excluded patients with ME/CFS, and as a result, just as we saw in the case of endocrinologists and  thyroid doses that are hundred times greater than necessary, the same axiom likely holds true for most potentially useful neuromodulating medications that have failed in TAAR related conditions were used in the doses that were way off the charts.

In fact, the mantra of many psychiatrists is that if the patient doesn’t respond or feel worse, than they probably need a higher dose of the medication (as opposed to the “start low, go slow” wisdom of those who treat of ME/CFS experts). The tragic irony of what happens to dysautonomia patients who end up in psychiatry office is perfectly illustrated in Case Studies guide accompaniment which to Stahl’s Essential Psychopharmacology which is titled; “The  woman who thought she was sick and then was ill”. It follows the course of fibromyalgia patient who was treated for her “somatic” problem and depression with large doses of psychiatric meds. Her treating physicians attributed her complaints of side effects to anxiety and somatization and insisted on increasing doses and adding more medications, which eventually led the patient to almost dying from ischemic bowel which the authors of the book chose to believe was unrelated to anything they did. The patient had a surgery and survived but lost a large part of her colon. (The authors of the case report do mention that when all her medications were discontinued upon on admission, she actually reported feeling great the next day). Another sad example of when physicians trusted their evidence based medical textbook more than they trusted their patient.

And that brings us to the subject of the Thyroid Wars. READ NEXT CHAPTER

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