A teenager’s story: Born with Lyme disease, finally on road to recovery
By Elizabeth Hancock
My Lyme disease story begins before I was even born. It starts with a nymphal tick, no bigger than the tip of a Sharpie, that infected my mother and changed the course of my family’s life.
A few years later my mom, still undiagnosed, had my brother, Tommy, and then two years later, she had me. From birth on, my brother and I were continually sick.
My mom persistently worked with the gastroenterologist, allergist, ENT, ophthalmologist, dermatologist, occupational therapist, physical therapist, speech therapist, and pediatrician to help us.
When I was a baby, my depleted immune system triggered several autoimmune disorders. I looked malnourished with a bloated stomach. By the time I was two, I was diagnosed with celiac disease.
A year later, still unaware of my Lyme disease, I was re-infected by a tick. Following the bite, my eyes crossed and I experienced headaches, back pain, night sweats, and even a small seizure. By the time I was four years old, we all had developed late-stage Lyme.
I used bifocals, my brother experienced multiple emergency visits for central nervous system issues, and my mom’s symptoms worsened considerably. She felt as though she was detached from the world physically and mentally. She experienced horrific tremors and pain from head to toe, and made many emergency room visits for shortness of breath. She couldn’t lift her head, get out of bed, or raise her children.
What pains me most is that this lifelong suffering could have been avoided had doctors listened to her and diagnosed us earlier. Even though we lived in a Lyme-endemic area on the east coast, finding a doctor that was knowledgeable and willing to treat us was like looking for a needle in a hay stack.
For years, although my mom consulted many orthopedic, rheumatology, infectious disease, and primary doctors with her classic Lyme symptoms, they always diagnosed her with something else.
Top specialists in New York City for neurology and rheumatology failed to recognize what was really wrong with her. My mom even specifically requested to be tested for Lyme multiple times, and the few doctors that agreed ran inappropriate tests that provided inaccurate results.
She had MRIs, CAT scans, spinal tap, bone density, nerve conduction tests, and many other labs and procedures, in an effort to determine what was the cause of all of her health problems. Unsure of the root cause, doctors began treating her as if she had ALS, MS, or fibromyalgia, with very strong narcotics.
My mom kept searching for answers and finally found a rheumatologist who was highly regarded in the Lyme community. Her appointment with this doctor lasted several hours and was a very in-depth exploration of her issues. They evaluated all of her records and completed the appropriate labs and brain scans for tick-borne diseases. She was positive for Lyme, Babesia, Bartonella and Ehrlichia.
Having been diagnosed so late, my mom was completely debilitated and had severe brain inflammation. Soon after her diagnosis, my brother and I were appropriately tested and found positive for Lyme, Babesia and Bartonella.
Finally, after a ten-year journey, we were all diagnosed and put on a rigorous treatment plan that included weekly visits and three years of PICC lines.
Fortunately, we had wonderful family support like our cousins, Brenda and Carol, who dropped everything to come live with us. My grandparents helped us with our homework, bathed us, and drove us to school and appointments. My dad supported the family, took care of my mom and did everything he could to ensure that my brother and I had a normal childhood despite the obvious tribulations.
I am lucky to have this kind of family support (especially my mom’s persistence), and I know without them I would not be on a positive road to recovery.
Elizabeth Hancock is entering her senior year in high school in Columbus, Ohio. She hopes to continue her education in college and work in Washington D.C. someday.