This post is one person’s experience and should not be considered medical advice.
I thought we had figured out what was wrong with me.
In August 2019, I was diagnosed with Lyme disease. I’d been experiencing increasingly intrusive IBS for the past year, to the point where wearing high waisted jeans past lunchtime was no longer bearable. My energy levels, never superb, started to decrease. Then, what turned out to be a very curious allergic reaction to the antibiotics I was given for a UTI took me to see a new doctor, who seemed nice enough.
This doctor, unexpectedly, ran tests for Lyme disease. They came back positive. I had no clue when I’d been infected, since I’d never seen a tick or had the stereotypical “bulls-eye” rash. My best guess was April of 2019.
Lyme is an infectious disease caused by Borrelia bacteria. It was officially recognised in the US in the 1970s and ever since there’s been an increasing number of cases worldwide (likely far more than we’re led to believe). My doctor told me I had acute Lyme, meaning I’d only had it for a few months. Chronic Lyme, a Lyme infection which has gone undetected for years, isn’t recognised by most doctors in the US.
This diagnosis didn’t explain the health problems I had had for the past ten years. I had been in and out of doctor’s offices since I was 17 years old, due to frequent bathroom visits, low energy levels, and general feeling of awfulness. It turned out I had depression, anxiety and an eating disorder but treating these didn’t clear up everything.
I had Lyme though; there was no refuting that. The same day I was diagnosed, I started a five-week course of antibiotics, the common treatment for Lyme. This set into motion a months-long cascade of the most frightening symptoms I’ve ever experienced, starting immediately after the first pill.
About an hour after I took the first dose of the antibiotic, it felt like I had to consciously keep breathing and like my heart was racing. I was terrified for reasons I couldn’t identify and shaking like it was cold out even though it was a hot, humid summer’s evening. There was nothing I could do but sit rigidly still and concentrate. It felt like an exorcism.
What I now know is that this was a Jarisch–Herxheimer reaction, unusual but not unheard of with Lyme. I don’t know that because my doctor told me so. I know it because my husband did hours of research to figure out what was wrong with me. My doctor no longer seemed accessible, as she refused to speak to me on the phone or see me in her office to discuss a robust treatment plan for my Lyme disease. Doctors in the US notoriously under-treat Lyme disease; I knew this. It was shocking to be so ill cared for though.