Advocating for A Diagnosis: Steve’s Lyme Story

The following story is a personal account of one individual's journey to obtain an accurate diagnosis. Lyme disease may mimic other conditions, making diagnosis difficult. The term "the great imitator" is often used to describe Lyme.

After hiking, an unexplained rash appeared on Steve, followed by more new symptoms and he knew something was seriously wrong with his health. Although he lives in Chicago, the home of numerous renowned medical institutions, doctors were unable to determine what was wrong with him. After several trips to the emergency room and countless doctor's visits, Steve had to take his health into his own hands. He wants to share his story with Illinois Lyme Association (ILA) in the hopes of educating and advocating for others with tick-borne disease. 

ILA: What type of symptoms caused you or a doctor to suspect you might have Lyme? 

Steve: I had a rash on my thigh that looked like a small bug bite, which spread to my torso, trunk, and upper legs. I developed radiating leg pain, swollen joints, body-shaking chills, and night-sweats. Migraines led to insomnia, interrupted sleep cycles, and dehydration. I had never experienced an illness this horrible before. I now know that all of this can be associated with a tick bite. I had been hiking on trails that were overgrown prior to getting sick. I think I may have been bitten by a tick while resting on a log, however, I never saw a tick on me. I had already begun to suspect I may have a tick-borne illness prior to visiting a doctor. 

ILA: Can you share a bit about your diagnosis process? 

Steve: To begin, I am a gay man in a large city, Chicago, and I want to share my diagnosis story because I think it highlights a big problem with getting appropriate treatment for Lyme: the possibilities of misdiagnosis. Lyme disease is not usually looked at in urban environments, and there is a healthcare stereotype threat for gay men with unexplained illness. 

I first went to urgent care and told the doctor about my recent deep-woods hiking trips and the symptoms that followed. Upon learning I was gay, he would only test me for sexually transmitted infections and not Lyme. I knew that was wrong but consented to get a Lyme test. He did not include that test in the blood work.

My primary doctor also dismissed the possibility of Lyme and wanted to test for sexually transmitted infections. He said that because my rash was not bullseye-shaped, and a tick would have to be embedded for at least 48 hours to transmit disease, I could not have Lyme. I never saw the tick!

After emergency room visits and more exams, I was beginning to realize that the doctors were set on making this illness something it was not and were unwilling to even consider Lyme. I eventually found an infectious disease specialist ,who, after doing more testing, found that a Western blot test for Lyme disease was positive. As I was leaving the office, he said to me, “You’re the first case of Lyme I’ve had in 25 years.” I smiled and left thinking, “I am probably not. You have probably just misdiagnosed people who actually had Lyme.”

ILA: How does a Lyme diagnosis affect your daily living? 

Steve: I was weak and exhausted, not able to leave my house or go to work for months. I still have lingering symptoms: sleep disturbance, brain fog, memory and focus issues. Initially, I found access to doxycycline, even though the doctor only gave me a 14-day prescription. I have found some relief using a very expensive herbal treatment protocol of tinctures and pills. This requires a daily regimen. I also started drinking functional mushrooms and have seen some improvement in my concentration. For the first time in four months, I can now sit down and read a book. I refuse to let this be a chronic health problem, and I am willing to try just about anything to make sure I can heal. 

ILA: What would you tell someone who is just starting a journey battling Lyme?

Steve: Be proactive in tick bite prevention. Your long-term health is too important to be dismissed by anyone in the medical community. Do whatever it takes to get the care you need. I believe that some doctors still rely on outdated misconceptions about Lyme treatment, so find a Lyme-literate doctor.

Also, insist on complete testing and treatments for Lyme and coinfections. Don’t discount the alternative treatment options offered to you. Be prepared for herxing. (Herxing is when a patient feels much worse before they feel better because of the bacteria killed by treatment.) I recommend the Johns Hopkins Rheumatology videos about Lyme on Youtube. They taught me about the basics of tick-borne disease. My top book recommendation is Recovery from Lyme Disease by Daniel A. Kinderlehrer. All we can do is educate, advocate for ourselves, and hope to help others in the Lyme community.