It was a teenage odyssey, figuring out that I had Lyme disease.
In 2009, at age 13, I went from having endless energy as a Junior Olympic-level distance runner to barely being able to get out of bed, wracked by horrific migraines and crippling fatigue. I felt utterly terrified and out of control, having been poked and prodded for months by a revolving door of specialists.
The answer came at the most inopportune time. The week before I started my freshman year of high school, half of my face became paralyzed, a condition called Bell’s palsy that is a common symptom of untreated acute Lyme disease. After starting high school unable to blink one eye or smile, I tested positive for the disorder, but my doctors were baffled because I had never had the classic bullseye rash. I later learned that 20% of Lyme patients do not develop this rash, a fact that would have connected the dots between my constellation of symptoms sooner; I had, after all, spent that 2009 summer camping in Amish country in central Wisconsin, a bustling tick metropolis.
My Lyme diagnosis and subsequent antibiotic treatment was a relief from the fear and uncertainty that had plagued me for months, but it was, unfortunately, not the end of my story. I experienced what it is now called post-treatment Lyme disease syndrome (PTLDS). For almost five years after my original diagnosis, I suffered from chronic fatigue and soul-splitting migraines that often forced me to take off school. I never quite returned to my pre-Lyme energy levels, and my running career was never the same.
Lyme disease took so much from me, but it takes much more from others – those without access to diligent health care providers and family who understand the horror of PTLDS. Although the New England Journal of Medicine reports that 10%-20% of Lyme patients will develop PTLDS, many medical providers still doubt its existence and thus offer limited support and treatment.
Every year since my experiences with Lyme disease and PTLDS, I have lived in fear of contracting the disease again. But instead of cowering, I use that fear as a weapon to ensure I protect myself from ticks as I continue to run, hike and camp. I also am passionate about educating others about Lyme disease prevention and the havoc it can wreak.