"It felt like an exorcism." I am one of the few people who's been diagnosed with Lyme disease.

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.

I muscled through — not gracefully, and with a multiple of aid from my family, friends and husband — and I kept taking the antibiotic because I wanted the nastiness of Lyme out of my body. I did little else but lay on my couch from August until September, which is not all it’s chalked up to be. There is only so much Outlander and Queer Eye a person can watch.

My course of antibiotics came to an end but my life didn’t return to normal. My perception of the world had changed; the best I could say was that things didn’t “feel real” and when the sun went down every day a nameless panic took hold of me.

Thankfully, my husband is a medical researching extraordinaire. He found an anti-inflammatory diet from one of the top Lyme doctors in the country and got me probiotics to restore the gut bacteria antibiotics had stripped away. Painfully slowly, my perception returned to something akin to what it was before. But my energy levels continued to plummet, and I landed back on the couch for at least a week out of every month. Still, sceptical of finding a doctor that I could trust, my husband and I did our own research and tried various herbs, supplements, and dietary changes.

Listen to The Quicky, Mamamia’s daily news podcast, talk about Lyme disease. Post continues below.

Like so many people, I walked into 2020 filled with hope. I thought I was on an upward trajectory. Sure, I still had some trouble now and again, but I had done antibiotics; the Lyme was out of my system. I told myself that my gut bacteria was just out of balance, that’s why I was so tired and had hormonal problems.

Then the world stopped because of COVID-19. Maybe what happened next is because of that pause or perhaps it might have happened regardless. But I fell apart. My fatigue reached an all-time low and my grip on reality started to slip. My husband sat next to me as I crumpled into a ball in a corner, detached from any sense of hope, dripping tears and snot, and he decided we couldn’t do this on our own anymore.

It was time to turn to another kind of practitioner.

There are many folks out there with knowledge and wisdom about the human body. Doctors with PhDs and white coats are not the only ones able to heal us. I knew this intellectually, but hadn’t ventured beyond the bounds of the established Western medical system.

I got very lucky. In March 2020, I sat down in the office of a kindly, middle-aged functional medicine doctor who wore a plaid shirt, chinos and an American flag face mask (because COVID). He bore zero resemblance to what many people think of when they hear “alternative medicine.”

I had given him a detailed summary of my health for the past decade, which he carefully read, and within ten minutes he told me I’d likely had Lyme for quite a while, perhaps since I was a teenager. That explained all the years I had been deeply unwell. He went on to diagnose me with post-treatment Lyme syndrome and Mast Cell Activation Syndrome.

Informed by a plethora of bloodwork, he crafted a treatment plan that utilised gentle herbs and dietary changes which will heal my body in targeted ways. I’m three weeks in and it’s shocking to me how sick I was before.

What sets the functional medicine doctor apart from all the other doctors I had seen for the past decade was that he listens to me and he believes me. It wasn’t until the end of my first visit that I realised I didn’t have to convince him I was sick, as I had had to do with doctors previously. He knew I was sick, and he’s committed to getting me better.

For ten years I have been learning to steward my own health because no doctor would help me improve my quality of life. I journalled my symptoms, I did research, I started studying herbalism, I tried things.

With my husband’s help, I’d done the best I could. In fact, many of the things we’d implemented turned out to be on the right track. But to regain full wellness, I needed someone willing to collaborate with me on my health and by some miracle I found that practitioner. Still, my functional medicine doctor is not responsible for my health now. That job is forever mine.

The Western medical model does not work for everyone, particularly those of us who have conditions which take time and care to understand. If you are struggling with unanswered medical issues, don’t give up. Collect your own health data, do your own research, look into other healing modalities and practitioners, like herbalists and functional medicine doctors.

If you can’t find a willing collaborator, don’t give up stewarding your own health. Keep looking and keep learning. It is worth it.

As I’ve learned, this approach isn’t very popular with most doctors. It’s counter to the current system of one-size-fits-all, doctors-know-best. But I was given this body to care for. The doctors and healers may help me along the way, but it’s my job to take care of the unique ecosystem that is my body. It’s your job to take care of yours.

For more from Ema Hegberg, read more of her articles on Medium or follow her on Instagram.

The feature image used is a stock photo from Getty.