October 9, 2016
I’m beginning to think that Secondary Erythromelalgia (EM) is akin to the body’s unregulated and grossly exaggerated “defensive” response to toxins or abnormal systemic conditions or diseases. Technically it manifests as both a neurological and vascular disorder but reversing it or medically treating it to the point where the patient is no longer handicapped by it or even free from its devastating nerve pain is presently not within the capability of traditional medical means. Even diagnosing it in a timely and accurately fashion is extremely difficult. Patients in constant or flare-like intermittent severe EM pain too often must play Medical Detective to “run down leads” in hopes of more clearly identifying their symptoms so they can then search for doctors with even minimal EM experience to correctly diagnose them. But being “treated” still seems to be a burden the EM patient must bear and with the proliferation of patients sharing self-treatment protocols in different Facebook and Yahoo EM Groups there is actually progress being made in that regard. However, professional medical identification, authentication and self-treatment oversight is sorely needed, yet for too many, or most, if not all EM patients, it is still elusive in this day and age when applied transcendent medical research has converted what were formerly life-threatening devastating forms of cancer into manageable life-style altering chronic conditions.
Logic would seem to indicate that addressing, treating and hopefully repairing the underlying primary “offensive” toxin, systemic interrupting event or harmful systemic condition would extinguish all “secondary” responses and conditions like EM but that typically or often is not the case with EM because nutrition, genetics and environmental factors conceivably makes each case of EM different such that individualized treatments or individualized modifications of treatments are required despite it’s initial “secondary” etiology. However, Secondary EM is NOT an “Invisible Disease” like Crohn’s Disease and in fact it’s “calling card” is the “Redness” discoloration it causes to the human body. While that is a superficial symptom of EM and it is the INCREDIBLY INTENSE NERVE PAIN which debilitates EM patients, it is that UNMISTAKABLE “Visibility” which makes me wonder why traditional medicine has been so INEFFECTIVE against such a palpably obvious and uniquely and severely painful disease?
After reading about the bedridden or wheelchair-bound EM-suffering of people who were formerly such healthy and active people, I begin to wonder if EM is a horrific byproduct of “our times” like taking prescription drugs as quick fixes or being affected by the environment and it’s waste products without even knowing it b/c certain people have a genetic predisposition which makes them vulnerable to various toxic environmental byproducts. I know this sounds too “creative” and not “medical” enough to rely upon from an etiological perspective but it would explain why in this day and age so many people suffer with such a painful and VISIBLE medical condition as EM which is impervious to all traditional medical treatments. It’s as if Secondary EM could be the first formally recognized Environmental Disease of our time.
That said, I think Secondary EM must be “embraced” by the patient (assuming he or she is physically and emotionally capable of doing so in light of EM’s potentially devastating effects) so that he or she could formulate a methodical diagnostic strategy to first identify and treat the “primary” condition, toxin or toxic event and if that is impossible or difficult (or it is successfully treated but the Secondary EM remains) he or she should also begin to treat the EM with basic nutrition to become generally as healthy as possible and also start experimenting with the Nutritional Supplement Protocol indicated by Dr. Jay S. Cohen on his website. To that end and has been pointed out to me by several experienced and smart EM patients, experimenting with Dr. Cohen’s Nutritional Supplement Protocol should be done one (1) at a time b/c the seemingly individualized etiology of EM may make one (1) or more of these Supplements ineffective or even harmful to different people and therefore they need to be able to identify it so they can remove it or lower its dose, if that is possible. This similarly indicates that that “dose” of each Supplement is likely different for each EM patient and therefore methodical experimentation is required.
Finally, I was very recently contacted by a close friend of mine who happens to be a top executive and scientist at a very prolific pharmaceutical company and they want to commence a formal research study on EM. When I know more details and I am permitted to share them (and at some point I’m sure that will come to fruition b/c they will need EM patients), I will do so. While EM sucks and the stories of experienced EM patients upsets me in a way I’ve never experienced, there is HOPE b/c I suspect there are many more EM patients than Pharma has been aware of (e.g. the misdiagnosed and the un-diagnosed) and thus there may be a lucrative (or at least altruistic) opportunity for these companies. That’s why I am determined to raise the awareness of Secondary EM in accordance with what I have written above. If Secondary EM winds up being labeled as the first VISIBLE Environmental Disease, then I think Pharma will take note regardless of its status as a “Rare Disease.” Accordingly, HOPE is a reasonable state of mind for someone with Secondary EM.