Marta Edmisten gave the following as public comments at the August 26 meeting of the federal Tick-Borne Disease Working Group.

Good morning, my name is Marta Edmisten. I am here today to talk about the impact tick-borne disease has had on me.

I had my first known tick bite around age 6, in 1980. I found a bump behind my right earlobe. I vividly remember my mom dropping the wriggling tick into a medicine dosing cup full of rubbing alcohol, which immediately turned red.

That was two years before Borrelia burgdorferi was officially identified and even more years before testing was available.

I am now 47 and currently live with two strains of babesiosis, two strains of Bartonella, active Lyme disease, as well as tick-borne relapsing fever.

My testing is recent and not “borderline.” This is after over five years of treatment. I am here to tell everyone that the adage that tick-borne disease is hard to get and easy to get rid of is simply not true for so many of us.

Within a year of my first tick bite, I developed endocrine issues so worrisome that I was followed by the head of endocrinology at DC’s Children’s Hospital for fourteen months. No cause was ever discovered.

Problems in school

By age 8, I suddenly developed attention and reading issues after having flawless testing results in kindergarten. I also struggled with a sudden onset of allergies and asthma. My joints would swell out of nowhere and ache. I was screened for juvenile rheumatoid arthritis. The results were negative.

By middle school I suffered from anxiety, depression, depersonalization, suicidal ideation, insomnia, memory issues, and confusion.

I was officially diagnosed with ADHD and dyslexia after getting less that 400 on the SATs. My GPA at the time was stellar. I worked really hard.

I got my second known tick bite in Rhode Island while I was in college. I had a bull’s-eye rash all over my neck. I was told it was a spider bite and sent home.

I was diagnosed with  SMI—serious mental illness—soon thereafter. For over two decades, I saw preeminent psychiatrists in Boston and New York City. I took all the pills–nothing worked. I was hospitalized multiple times. I voluntarily underwent electroconvulsive therapy (ECT) treatments.

By the time I was 36, my arms and legs often twitched uncontrollably and soon fatigue and pain made running my successful business impossible. At 40, my vision was so poor I was unable to read, walking was impossible, and I became incontinent. Multiple autoimmune diseases were suspected. I was finally tested for Lyme disease and co-infections in 2016. I started treatment soon thereafter.

I am no longer on psychiatric medications, just things to help me sleep. Physically, I am better, but I’m still extremely disabled. Just last fall, I spent months not recognizing my home or remembering that my closest friend had passed away over a year earlier.

I look perfectly normal — as long as I am seated. I live with extreme mobility issues, drenching sweats, intermittent fevers, neuropathy, immune dysfunction, pain that often makes sleep impossible, and cognitive issues that make my dream of becoming a social worker out of reach at this time. There are so many people with my story.  Please believe us.  Please help us.

Marta Edmisten lives in Maryland.