Below, Sam tells her story of being mistreated by a “Lyme Literate Medical Doctor” when she was a teenager. As she relates, chronic Lyme is not just about a false diagnosis, but about an all-encompassing identity.
Sadly, false information about Lyme disease—an infection easily cured in children—can cause unnecessary anxiety. This anxiety can lead a well-meaning caregiver to facilitate a false diagnosis and inappropriate treatment of a child. More information about this phenomenon can be found in our section on Medical Child Abuse.
When I was 12, I was bitten by a tick. The tick was on me for such a short period of time and I lacked the bullseye rash, so my pediatrician didn’t test me for Lyme disease.
Two years later, when I was 14, I began dealing with joint pain, headaches, and GI issues. I was also dealing with anxiety and depression, so many doctors wrote it off as psychosomatic. A year later, when I was 15, my mom’s coworker reached out to her and told her that her son had dealt with similar issues and that he had Lyme disease, and gave us the name of a so-called “LLMD”.
That LLMD tested me for Lyme disease and its coinfections. The only test that came back positive was for Epstein-Barr, yet she still diagnosed with Lyme & coinfections, convincing my mother and I that Lyme is a purely clinical diagnosis. She said that I got it from the tick bite when I was 12, and because it went untreated for 3 years, it was now “chronic” and could not be cured, only put into remission. We believed her.
And so started a treatment process which pumped me full of drugs and drained our wallet since, of course, nothing was covered by insurance. I was on oral antibiotics, anti-malarials, anti-virals, steroids, opioids, gabapentin, and prescription NSAIDs.
I became obsessed with my identity as a chronic Lyme patient. I joined support groups and loudly advocated for Lyme awareness. I spread myths about chronic Lyme disease. It became my entire identity.
She treated me in this manner until I was 16, and at that point, still not feeling any better. In fact, I was feeling worse. At this point, my doctor decided I needed a PICC line put in for IV antibiotics because I had poor veins for frequent access. This is where my mother began to grow suspicious.
I had been on antibiotics for an entire year, and I felt worse. I was still obsessed with my Lyme diagnosis, but my mom refused to have a PICC line put in. Instead, she decided to take me to another infectious disease specialist for a second opinion.
The new doctor gave it to me straight. She informed me about the quackery surrounding chronic Lyme, and told me that I had been misdiagnosed with Lyme disease. I never had it at all. At first I was angry with this news; my entire identity had been stripped from me.
I was obsessed with having Lyme, and now I didn’t have it. I was angry that I didn’t have it. I eventually accepted this and spent the next year moving on from and separating myself from that identity. I began doing things that I had given up when I was being treated for Lyme, I reconnected with friends, and my life moved on. I was happy. But I still was not healthy.
By the time I was 18, I was still dealing with health problems. I decided to see a rheumatologist. I gave him my history, including the Lyme incident, and he did a physical exam. He voiced suspicions that I had a connective tissue disorder, and referred me to a geneticist.
I saw the geneticist, who after evaluating me and running a bunch of scans as well as genetic testing, formally diagnosed me with Hypermobile Ehlers-Danlos syndrome (hEDS). My quack Lyme doctor had overlooked the symptoms that pointed to it: joint hypermobility, multiple dislocations in my medical history, mild skin hyperextensibility, a mild mitral valve prolapse, etc. After I was diagnosed with hEDS, other people in my family were prompted to see a geneticist, and family members also got diagnosed.
I guess I’m sharing my story here because I wanted to show that people who used to be OTT (Over-the-top*) can change their ways. I also wanted to share my story as a victim of chronic Lyme quackery, and how dangerous it is.
The more that misinformation is spread, the more people will be sucked into getting misdiagnosed with Lyme disease and getting treated with unnecessary long term antibiotics. I think that my story also shows the dangers of OTT culture.
When I thought I had Lyme, I gave up activities that I loved and fell out with friends to play the “sick” role. I became so enveloped in the identity that I completely lost myself. My story illustrates how toxic OTT culture can be.
I am 19 now and have been diagnosed with hEDS for a little over a year. My health has improved tremendously, mainly because of physical therapy, my rheumatologist and pain specialist, and actually going out and living my life rather than obsessing about my illness. I attend college, I have a job as a pharmacy technician, I have a girlfriend, I have hobbies, and I’m involved in my community.
While I was OTT when I had a Lyme diagnosis, I am not anymore. However, the Lyme diagnosis does still haunt me. I frequently worry that the validity of my hEDS diagnosis will be doubted because of my history. I fear this even more now, with the rise of OTTers claiming both Lyme and EDS as their diagnoses.
I have hEDS, but I don’t subscribe to the whole “zebra warrior spoonie” mentality because I know from experience how dangerous and life ruining it can be.
* Over the top (OTT) is a neologism that describes those who glorify, exaggerate, or fabricate diseases or symptoms, in an extreme manner.