Surviving chronic Lyme and the Boston Marathon bombing
April 15 is the 10-year anniversary of the terrorist attack in Massachusetts.
In 1974, while living near Lyme, Connecticut, I had a tick stuck in the back of my head for many days. I immediately developed obvious neurological symptoms, but there was no such thing as Lyme disease yet. I went without diagnosis or treatment of any kind, and either adjusted or went into remission.
In 1977, we moved to Maine, surrounded by woods—and ticks. I developed bull’s-eye rashes on numerous occasions, but never got diagnosed with Lyme disease.
In the late 90s, I was attacked by a swarm of moose flies, went into anaphylaxis, and experienced a huge flareup of symptoms. Yet, I was *still* not diagnosed with Lyme disease. I was misdiagnosed with chronic fatigue syndrome… which was later changed to fibromyalgia.
Despite these health challenges, by 2006 I was working as a professional singer and actor. One day, during a stage performance, I tripped over a cord that had not been taped down, fell backwards, and was knocked unconscious.
Unfortunately, this ended my music career. The accident left me bed-bound for years and led to various surgeries. But in time, I recovered my ability to walk and re-emerged into the outside world.
A terrifying explosion
Fast forward to April 15, 2013. Patriot’s Day in Massachusetts. I left my Boston apartment and eagerly joined the throngs of onlookers near the Boston Marathon finish line. I was seated on the sidewalk when the first bomb exploded in front of the stores next to me. Both bombs were on the sidewalk, blasting five stories high—much larger, and more terrifying, than on TV.
The entire sidewalk shook, along with our bare, metal chairs, severely bouncing my spine, neck, and head. Clutching my loyal service dog, I raced to the safety of a nearby bar. Entry was blocked by stunned spectators.
“Move, MOVE, MOOOOVE,” I screamed. By then, a line of panicked people pushed me through. My arms wrapped around my tiny dog like a straitjacket, to protect him from being crushed. This left me unable to defend myself, being violently shoved back and forth, like a pinball, by frightened folks now surrounding me on all sides. Finally, I fled out the back entrance to the safety of my nearby apartment.
Miraculously, I had no outward signs of injury. But there was damage within, invisible to those around me. Shortly after the blast, I had severe head pain, vomiting, confusion, and back pain. My hearing felt like I was underwater for months. I tried to explain to the doctors that my entire spine ached from the impact of bouncing repeatedly against the metal chair, but they didn’t understand the severity of my injuries.
I have a rare disease, a connective tissue disorder called hypermobile Ehlers-Danlos syndrome. It leaves EVERY part of my body, skin, organs, bones, softer than a healthy person’s tissues. I was sent home from the ER without a diagnosis, medication, or treatment plan. My discharge papers said only “anxiety.”
A new goal—and new symptoms
Despite severe chronic pain and panic attacks, I set a new goal for myself: to train for and run in the 2014 Boston Marathon. And I did it! It was six and a half hours of agony—but I did it.
But despite that accomplishment, my health challenges continued. In 2015, on a cruise to Belize, I visited their zoo and was caught in a sudden downpour. Within minutes, my arms and legs were streaked with blood from more than 100 bug bites. I soon developed bull’s-eye rashes on my right leg. What new microbes did I receive?
I was tested for Lyme back home and the ELISA was positive. But my neurologist assumed it was a “false positive.” This was followed by a Western blot test, which was negative. I claimed a “false negative.” But my doctor only believed in false positives. Months passed and my illnesses progressed, with no help from doctors.
Finally, a diagnosis
In 2019, a private practice nurse tested me, via IGeneX, for 12 types of tick-borne illness. I was positive for three types of Lyme, plus babesiosis and relapsing fever. I was also borderline positive for Bartonella and ehrlichiosis. We began treatment. Sadly, after a year, she stopped treating patients with chronic Lyme disease. Was she reported to the state medical board? I don’t know.
In 2022, I experienced another flare up. My symptoms included multiple rashes, chronic headache, chronic nausea, dizziness, and severe fatigue. I consulted two doctors, who both assured me those were not symptoms of tick-borne illness.
It’s 2023, and I’ve tried over a dozen different Lyme disease treatments, all paid for out of pocket. I do a different type of detox every single day because I am on so many medications and supplements that my liver struggles to filter them all.
I’ve restricted my diet, done hyperbaric oxygen dives, followed various herbal protocols, and taken two months of disulfiram. With each treatment, I would feel better at first, and then flare up again.
Lyme disease and other tick-borne illnesses are a pandemic that far predated COVID-19. I now passionately dedicate my limited energy to being a patient advocate for tick-borne illnesses via Ravel Health.
Annually, I meet with my senators via the Center for Lyme Action’s virtual fly-in, both to create awareness and to fight for Lyme funding.
I am not dead yet, but tick- borne illnesses have cost me my life. I spent my childhood suffering, undiagnosed, with neurological damage. I have spent my adulthood suffering, undiagnosed by many so-called specialists. Every year, I try a new protocol to treat tick-borne illnesses. Every year, I start new supplements to reduce inflammation in my body. What will this year bring?
Lynn Julian is a speaker, patient consultant, and author.