THIS BLOG POST IS PART OF OUR PEOPLE TO HIGHLIGHT SERIES DURING OUR 2020 YEAR-END APPEAL. EACH WEEK WE’LL BE SPOTLIGHTING A GLA COMMUNITY MEMBER WHO HAS HELPED TO ADVANCE OUR MISSION. TO SUPPORT GLA DURING OUR YEAR-END APPEAL, DONATE HERE.
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.
Today I’ve found that doing a combination of IV antibiotics, IV supplements, holistic treatments (sauna detox, acupuncture, etc.) has been most helpful. I’ve learned that it’s so important to be patient and that healing isn’t linear.
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.
As you may know, GLA is solely funded by donor support. Due to COVID-19, we have been unable to hold our usual fundraising events. Please donate below if you’d like to support GLA’s research, our programs, and our mission.
Sjögren’s syndrome (pronounced “show-grins,” sometimes abbreviated SS) is an autoimmune disorder that predominantly affects women, particularly of perimenopausal age. Mayo Clinic explains that, in Sjögren’s syndrome, “mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva.” Some researchers believe that dysfunction in producing one or more hormones (such as DHEA, testosterone, or estrogen) may be at the root of the problem.
