How the Lyme Disease Controversy Has Impacted My Medical Journey
We all have bad days, sometimes rough weeks or even months. Eventually we emerge from these dark periods stronger and re-energized to tackle the challenges that life presents. That is the expectation at least. I am currently having a bad decade.
About a year and a half ago I was diagnosed with late stage neurological Lyme disease. Last month I was diagnosed with Bartonella. These are both infectious diseases transmitted by the bite of a tick no larger than a poppy seed. These diagnoses came after chasing my tail through multiple laps of various health care systems in Boston, Massachusetts, and Western Connecticut.
No specialists in the fields of rheumatology, neurology, orthopedics, or gastroenterology could provide me with any reasonable answers to explain my pages long symptomology. This may seem at first glance to the uninitiated to be an atypical experience or a medical anomaly. Unfortunately it is not. There are hundreds of thousands of people in similar circumstances, struggling through the intense pain, cognitive impairment, loss of identity, isolation and abandonment brought about by Lyme disease and co-infections.
Those of us with these illnesses often pass for healthy and able-bodied. We become well practiced at maintaining a façade for the benefit of those around us. Fear of estrangement from acquaintances, friends, co-workers and loved ones often keeps us from discussing this struggle openly. Since the 1970s, an on-going medical debate known as the “Lyme Wars” has been raging. I am not going to bother getting in the midst of this so-called “controversy” as I am evidence enough that the establishment position on Lyme and co-infections fails critically ill people and is willfully ignorant of emerging science and research.
After having an increasing number of painful and nagging symptoms for many years, I finally hit the wall in the summer of 2014. I had just struggled my way through a musical performance at the 2014 Jamaica Plain Music Festival in Boston with my instrumental band in 90 degree heat. Shortly afterwards, I knew that this would be the last time I would be seeing a stage for a very long time. Mid performance, the muscles and tendons in my arms, hands, neck and back began to seize up and tighten. Every joint in my body ached deeply. Burning sensations and numbness permeated my extremities and I was stuck by a powerful wave of intense fatigue beyond my ability to describe. If I look back at the video taken that day of my performance, it is not apparent that anything was wrong. I played a great set. I have been effectively homebound by my illness since that day.
I have had the good fortune in the last year to connect myself with a knowledgeable and compassionate doctor willing to treat me, but I am still at the trailhead of a very long and arduous road of recovery. Treating Lyme and Bartonella is itself a painful process involving reactions, symptom flares and side effects from the mountain of medications I am required to take. It is a grueling, emotional process that tests the limits of endurance. Through treatment I have experienced periods where I begin to see some light at the end of the tunnel, however, those periods of improvement are short-lived. This illness will frequently display glimmers of hope only to snatch them away with cruel regularity. It is a deep dive through the Mariana’s Trench of human experience.
Through sharing this small part of my experience hopefully others may draw some benefit. Perhaps you or a loved one are in a similar set of circumstances. Perhaps this view from the ground floor of chronic illness sheds some light on the shadow world that people with tick-borne illnesses are compelled to inhabit.
For me, this fight is deeply personal as I have been on the receiving end of profound mistreatment and questionable ethical behavior by the medical establishment for many years. I was allowed to slip through the cracks due to unreliable testing, misdiagnosis, avoidance, suppression and ignorance. The system that was supposed to “care” for my health did nothing for me but usher me into a house of mirrors and marginalization, from which I will be lucky to emerge. One person’s story may be another’s anecdote, but there is power in narrative. I have no plans to stop telling mine.
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