Brian Dashore Guest Blog

I clearly recall running at baseball practice when my left leg started to drag. I was only 6 years old, and I just kept trying to run. A burning sensation ran up to my pelvis. My coach thought I pulled a muscle and sent me home.

When I arrived home, my mom, a neurologist and naturopathic doctor, evaluated me. She couldn’t find a reason for the pain and near paralysis of my leg. We traveled to Boston to see her good friend, an orthopedic surgeon at Harvard. After a battery of tests including nuclear full body bone scans and 20 tubes of blood, they put me in a wheelchair.

The results were inconclusive.

We saw nineteen specialists before receiving a referral to a pediatric Lyme-literate specialist. I was diagnosed with Lyme disease, Bartonella, and 11 coinfections.

By this time, I had also developed several other symptoms. My face began to grimace and twitch. It felt like bugs were crawling under my skin and my brain was shivering. I also gradually grew mentally and physically weaker. I frequently lost my balance and had an assortment of cognitive issues. My anxiety increased and sleep brought on night terrors.

The pain and dragging of my leg meant that I was still in the wheelchair when I returned to school. My immune system was also weak and reactionary, so I also had to wear a mask in the hallways at school.

These presented their own world of challenges. I frequently faced bullying on the playground. The school bus rides were full of bigoted, discriminatory, and snide remarks. My guidance counselor suggested sharing my condition with my classmates might help.

I stood in front of my fourth-grade class and spoke about my condition. It was a turning point for my classmates and me. They shared that they were afraid to “catch” my motor tics, blinking eyes, head nodding, vocalizations, limp, back pain, and limited range of motion in my head and neck.

Speaking in front of my class, opened the discussion to understanding. I think for fourth graders is a huge milestone, and it seemed to help.  Some of my classmates started steering my wheelchair for me. Others carried my bag. A few even came over to my house for playdates. That moment also taught me that I can’t rely on others to advocate for me. I need to be able to bring change to my own world.

My physical limitations extended into academic challenges too. When my treatment began, the school provided academic accommodations. I struggled with handwriting, math word problem, focus, and concentration.  Soon enough it felt like the fog lifted. I was able to understand and grasp things that had been difficult. Many of my physical issues were also diminishing and vanishing.

As I reflect back, it’s been a long journey. There is still more work ahead, but I have goals and feel I can achieve them. I’ve had the good fortune of growing up around my mom’s practice and the work of her mentors. My involvement in the Lyme community also opened doors for me. I’ve spoken alongside Congressman Chris Smith, Dr. Robert Bransfield, and Mrs. Smith.

I’m entering my senior year at a rigorous pre-med integrated health and science high school in the fall. So, I’ll spend my summer working on my goals. I’m sharing my story at AutismOne in Chicago. I need to decide where I will apply to medical school. Helping others is important to me, so I’m also active in my online support group, TeenLymeHub which is featured on my website teenlymehub.com.