English · Lyme

My Lyme, time frame 2015 to 2018

On July 4th a lot of people celebrate their independence. I personally commemorate the day I was bitten by the tick that gave me Lyme’s disease.

I was working on a golf course for the French open of 2015. I wore a bright pink uniform and walked around asking people to fill in a survey for the company that hired me. Overall not a great day but I was getting paid pretty well and getting some vitamin D.

Later that night I noticed a small red mark on my stomach that looked like a very standard insect bite and thought nothing of it. I really should have because this day started a year of doctor-hopping.

My first Lyme outburst happened about three weeks later. (I later found out it was probably a Jarisch–Herxheimer reaction caused by the quinine in the tonic water of the Gin and Tonic I had). I was out with friends when I started getting really really hot and itchy all over my torso and paralysing pain spread across my upper back and shoulders.

Long story short I ended up in the hospital with an IV that had pointless painkillers in them and really bad blood test results. The doctors could tell I had an infection but could not identify it. I stayed in hospital for three days, slowly getting better despite the lack of treatment. As you’d expect my doctors were very confused and got me to take all the tests they could possibly think of (or that’s what it felt like anyway).

On the morning of the third day, a doctor came into my room asked me a few questions, said I had Lyme’s disease and prescribed me three weeks of antibiotics along with an Elisa test that came back negative.

And that should have been the end of it.

I took my treatment religiously (slightly worried that my teeth would go yellow, if only I had known) and surely enough a few weeks later I had another outburst with exactly the same symptoms. I went back to the hospital, had a lot more tests done and left with no answer when I felt fine again.

When the third crisis hit on Halloween I wasn’t too hopeful (but much less scared) as I headed to the hospital. At this point I could tell I was a bit of an inconvenience because despite being able to tell there was something wrong, the origin of it was still a mystery. It turns doctors don’t love you showing up with a mysterious inflammation and a pile of tests that gave no answer.

Every time they eventually thought about Lyme but as soon as I said I had taken the antibiotics, they moved on. You see it couldn’t be that, the bacteria had been killed. Chronic Lyme’s disease doesn’t exist.

And so I went home again.

At this point I had finally made the connection between the tonic water and the outburst that sent me to the hospital, so I stopped drinking it and went on with my life. Inevitably the symptoms started creeping up on me (weight gain,, anxiety, back pain, headaches, sensitivity to light, memory loss, brain fog, heavy legs, chronic fatigue…)

Before long I couldn’t recognise myself anymore, I had thoughts and feelings that weren’t mine and my body didn’t look or feel like mine anymore. I barely found the strength to convince myself I had changed drastically and needed to learn to live with it.

My parents weren’t convinced and started looking into Lyme’s disease. They got in touch with a Lyme organisation that gave them the name of a doctor. I was taken to her almost against my will (not much faith left in doctors at this point) and she gave me a diagnosis, one year after I got bitten.

I took antibiotics for about 6 months, with ups and downs. After about two months my doctor said I should try to change my diet to a gluten free, dairy free and sugar free one. I very soon saw a change in my energy levels. My symptoms were lessened, I could sleep less than 15 hours at night and still feel alive and most importantly my pains weren’t quite as bad.

The first time I went off the antibiotics the symptoms came back stronger than ever after barely two weeks, and I think that’s when it hit me that I wouldn’t ever get rid of Lyme. It was really hard because going off the antibiotics had felt like a victory to me. I went back on them  (with the side effects that came along) and I soon as I could I stopped and started taking a “natural” treatment.

I got my Tic Tox -a cocktail of essential oils that efficiently fights the bacteria- from a pharmacy in Germany, because the sale is forbidden in France. After a few weeks I found an aromatherapist that made me my own treatment. I now fill up my own pills and take four of them a day. I still have symptoms, some worse than others but I haven’t felt the need to go back on antibiotics in about a year.

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