NOBLEBORO — My life changed dramatically 10 years ago. My husband and I were outside doing fall cleanup when I was bitten by a tick. We removed it, flushed it and didn’t give it another thought, not even when I became symptomatic 10 days later.
For the next two years, I was misdiagnosed by 23 doctors and specialists with everything from panic attacks to respiratory infections, chronic fatigue and fibromyalgia. When my neurological symptoms intensified, a scan revealed lesions on my brain, and I was diagnosed with multiple sclerosis. When my symptoms became even more severe and I was not responding to treatment, I was re-evaluated and my diagnosis changed to Parkinson’s. When I began to have trouble swallowing and the use of my arms and legs was a daily challenge, my medical providers tested me for amyotrophic lateral sclerosis. This is when I knew I needed to fight and advocate for myself.
Despite previously testing negative four times for Lyme disease, I finally found a doctor who saved my life. After an exam and additional bloodwork and tests, I was diagnosed with late-stage neurological Lyme, babesiosis, bartonellosis, Rocky Mountain spotted fever and ehrlichiosis.
Over 1,300 new cases of Lyme disease were diagnosed in Maine last year. After treatment tailored to my infections, I went into remission five years ago. Ever since, I have been dedicated to helping everyone suffering with this disease by raising awareness and educating people about the risk of tick-borne disease and how to protect themselves. Most important, I want to make the search for resources easier, accessible and affordable. I co-founded Midcoast Lyme Disease Support and Education to connect patients and their families with the services they need to journey back toward health and wellness.
Tick-borne illness is not a cookie-cutter disease, which explains why the cookie-cutter treatment approach has failed time and time again. It’s time we adopt an all–hands-on-deck approach to tackling this public health threat. Recently, I was honored to testify at a Senate Aging Committee hearing focused on a new bill authored by Sen. Susan Collins. The Ticks: Identify, Control, and Knockout (TICK) Act would help establish a national strategy to prevent tick-borne diseases; it would support federal research that had led the scientific response to fighting ticks; and it would establish grants to support state health departments’ efforts to improve data collection and analysis, early detection and diagnosis, treatment and public awareness.
Enacting the TICK Act that Sen. Collins introduced will provide a lifeline not only to patients but also to medical providers. With funding available for research and education, we can get medical providers on the same page with not only improved diagnostic tools but also better, more effective treatment options for their patients. With the TICK Act, and Sen. Collins’ support in Washington, we can stem the growing threat of tick-borne disease.
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