John’s story
As a 10-year-old boy, I ran everywhere. I ran to the bus stop, I ran to the kitchen for snacks, I ran to meet my friends playing baseball. I never walked, always ran. Until one day I fell to the ground because my heart hurt. I called for my mom, and we sat there until I felt better. Then it happened again… and again… and again. The next day I had a large, streaked, red rash going up the side of my body and neck. It looked like stripes and/or stretch marks. The pain in my heart was even more frequent.
That night when I was taking a bath, my dad found a swollen tick on my back. We headed to the ER to have it removed and despite all my symptoms, the ER gave me one antibiotic pill, doxycycline. My parents questioned the effectiveness of one pill. The ER doctors said they were following IDSA guidelines for the state of Illinois and to follow up with our pediatrician. The next day we went to the pediatrician who told us Lyme disease was close to non-existent in Illinois and our treatment was complete.
During the next 8 weeks, many things changed for me. I became so afraid. I was afraid to go upstairs, outside and in the basement. My fear paralyzed me from doing normal everyday things. I worried about everything and felt rage for the first time. One day, I took my baseball bat and hit the backstop repeatedly to try and let it out. This was my first experience with rage. My headaches were so bad, and I just didn’t feel right. I started to lose friends. I really did not trust any of them anymore and started to withdraw within myself. I felt like everyone was against me and out to get me.
A few months later, I was introduced to a Lyme literate doctor who diagnosed me with Lyme disease and Bartonella. We traveled 6 hours to another state to meet this doctor. I sat in the waiting room for a long time next to an older gentleman who said he had Bartonella too. We shared our symptoms and this was the first time I felt understood in a long time. I’m thankful he was brave enough to share his story with me.
This is why I share my story with you. Currently, I’m a high school student and athlete. I’m stronger now but I still struggle with the symptoms of Bartonella and Lyme disease. In the past few years, I’ve had shingles 2 times and they say as a young person that’s not supposed to happen. My immune system is not as strong as it should be, so I still have some work to be done. I encourage you to share your story so it can help others too.