Ticked Off: My Lyme Disease Story

Lyme disease can have serious, long-lasting and life-changing consequences.

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.

RELATED: What You Need to Know About Tick Season in Wisconsin

 

 

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.

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Since interning for the magazine in spring of 2017, Anna has contributed to both the print publication and website. She has covered topics from women in the workplace to communal gardens and also writes guides to life in Milwaukee. Outside of writing for the magazine, Anna is going back to school at UW-Milwaukee to work towards a career in genetic counseling.