Patient story: Lyme disease deserves more than “mediocre attention”
March 8, 2022
By Casey Fillian
Thirty-seven years ago, I went to summer camp in a heavily wooded area of New Jersey. I started coming down with odd symptoms a few weeks later.
I had high fevers, exhaustion, muscle aches, a mysterious rash on my torso, and a knee swollen twice its size.
For months, we went without answers. My mother took me to every type of doctor under the sun–orthopedics, rheumatologists, family physicians, infectious disease, and finally my pediatrician. And that’s where we FIRST heard the words “Lyme disease.”
We were taken immediately to a prominent medical center in Connecticut, to be observed by doctors familiar with this mystery disease, since Lyme wasn’t technically ‘in’ New Jersey at that time.
After a battery of tests and exams, the medical team there confirmed that I was indeed infected with Lyme. Actually, my blood tests showed I was septic.
I would suffer several recurrences of these symptoms over the next three decades. Lyme disease has permanently affected my heart, liver, joints and blood pressure regulation–just to name a few.
It was very difficult as a child to be sick with something that not many people knew about or had even heard of. I spent weeks and weeks in the hospital, feeling scared and alone, though my mother never left my side.
She has been my advocate so many times throughout the years and has never stopped fighting to get me the help I need.
I feel it’s important to share our story and educate people about the seriousness of tick bites, as it literally changed the course of both of our lives forever. My most recent flare up occurred just six short months ago, requiring my fifth round of antibiotics and second PICC line.
I am currently battling septic/inflammatory arthritis and fighting everyday to keep my mobility. I’m praying there are better treatments on the horizon and more recognition for the people suffering. We deserve so much more than the mediocre attention this disease gets.
My heart goes out to all my fellow warriors.
Casey Fillian lives in New Jersey.