Tale of a Chronic Lyme Journey
By Tom Stewart
and strength training workouts at the fitness center on non-swim days. In hopes of finally dropping some excess weight, I pushed myself to the max during these workouts. One morning, to my surprise, I had to call it quits after 50 lengths in the pool. From the start, every lap felt like I was swimming through molasses. Thinking my extreme fatigue was simply a matter of overtraining, I rested for several days to recover. When I returned to the pool with great ex- pectations, I had trouble getting going and barely eked out twenty lengths with a supreme effort. I knew then that something was ter- ribly wrong. This was unlike any sensation I had ever experienced!
O With each passing day, new symptoms emerged, including
drenching day and night sweats, panic attacks, flu-like symptoms, sore throat, splitting headache, bronchitis, muscle and joint pain, and relentless insomnia. My mysterious illness progressed over the next eight months to include over thirty-five symptoms. It often took at least 30 minutes to harness enough focus and willpower to manage a standing position.
Once I was up, every task seemed to get done on pure adrenaline that left me completely spent. I was struggling to remain cognitively and physically functional and work was totally out of the question. Every day it seemed I was forced to further scale back expectations to an appropriate balance of activity. I remember just removing the lights from the Christmas tree or taking a shower was more than I could handle. My days became more isolated and less productive as I struggled just to get necessary tasks done. I felt so diminished as a person and was no longer functional.
The Fight for a Diagnosis Periodic visits with my trusted primary care physician re- sulted in no diagnosis beyond my bronchitis with a prescription to go home and get more rest. At each appointment, I came back “rested” with new symptoms to report. Each time the prescription was for continued rest. My lab tests indicated nothing abnormal and a Lyme Elisa test came back negative, so that was ruled out.
22 Essential Living Maine ~ May/June 2017
n April 24, 2010, my life changed abruptly and without notice. Until then, I had routinely been swimming 100 lengths in a nearby pool several days a week with aerobic
Perhaps I should see a specialist, I suggested. My busy doctor put the burden on me to go home and research the appropriate specialist to see, and then he would make the appointment. So, I saw an infectious disease specialist next, who diagnosed me with post-nasal drip. Really? At my follow-up appointment after using the prescribed treatment of an inhaler and drops, I reported that the last of the bronchitis had cleared but all the other symptoms were still plaguing me. She pleasantly stated that things are mov- ing in the right direction and that I should be feeling much better soon. At that moment, it hit me; my PCP and infectious disease doctor were not taking my reported misery seriously and were thinking this was all in my head.
“Resting” again back home, I went online and researched
potential sources for my growing dysfunction. My temporary self- diagnosis was fibromyalgia and chronic fatigue immune deficiency syndrome based on my worst symptoms. Eight months into this medical journey, I made a two-hour consult at a clinic in Norwalk specializing in these two diseases. Sixteen tubes of blood and four weeks later, my follow-up telephone consult revealed many abnormal lab results. I was then told that I was one of the sickest patients they had seen in some time and the clinical diagnosis was Lyme disease and three other tick-borne illnesses.
Prior to this, I was not really aware of Lyme disease and had
no known tick bite or rash. Once I had the diagnosis and after exploring many online resources, including Lyme support chat rooms and Lyme advocacy and medical organizations, I knew the diagnosis hit the nail on the head. I learned that my pathway back to a state of wellness was most likely going to take months, perhaps years.
Since then, I’ve had a total of four integrative functional doctors
who independently confirmed the diagnosis. These dedicated doc- tors all employ multiple modalities in their treatment philosophies that range from traditional allopathic* medicine to herbals and other alternative healing methods. My full-time job as a proactive patient has been to learn all I could about tick-borne illnesses and to be as close to 100% compliant with my ever-changing complex treatment protocols. When I feel up to it, I try to raise awareness in the com- munity about the increasing dangers of tick-borne illness.
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