by Victoria Kotowski
I am grateful to GLA for speaking up for a community that unfortunately has not been given enough attention.
I went undiagnosed and untreated for 15 years. My initial symptoms started when I was in 5th grade in the fall of 2004. I was likely bitten a second time in 2012. During the next seven years, between then and 2019, I saw over 20 medical professionals, none of who suggested Lyme. In 2019, After months of recurring pain and swelling in my joints (right knee in particular), I finally went to an orthopedist who recommended I get tested for Lyme disease right away. Within a week, I had the results back that I had a positive result for every band tested, including co-infections. My LLMD later explained that my test results made sense to him, given my long list of symptoms and medical history.
Because I went undiagnosed for so long, I have an array of ongoing symptoms. The most prevalent being seizures/fainting, muscle spasms/tremors, joint pain, migraines, extreme fatigue, vision/hearing issues, depersonalization, brain fog, anxiety, blood circulation/body temperature problems, insomnia, depression. I went from being an extremely active, social, fit, and happy person to completely bedridden at times. I had to stop working for a year and quickly went from being a social butterfly to being a hermit. I had to leave college. At one point, I had to move out of my apartment and move in with my parents because living alone was too dangerous due to my seizures and frequent fainting spells.
I first came across GLA when I was diagnosed and desperately searching for answers. They have provided me with an incredible community to lean on for support and turn to for answers. It is also a great resource that I have shared with many who have reached out to me who are confused and scared like I once was. I am grateful to GLA for speaking up for a community that, unfortunately, has not been given enough attention.
I am also a proud Global Lyme Alliance Education Ambassador. I have been sharing my story and tips/education provided to me by GLA virtually on several platforms during the quarantine. In May, I also ran a fundraising campaign, “Lax Out Lyme,” a challenge to raise awareness and funds for GLA. I am happy to give back to an organization that has given me so much.
If I could share one piece of advice from my own story, it would be to trust your gut and be your own biggest advocate. I have struggled with symptoms since 2005, but I developed into a very successful student-athlete while having a busy social life. This, coupled with my lack of education/awareness of tick-borne illnesses and no mention of Lyme from any of the numerous doctors I have seen over a fifteen-year period, fueled my self-doubt that anything was wrong with me and led me to continue pushing on.
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