Lyme disease: a runner’s story

In May last year, Karrie Hill-Hughes went for a lunchtime run in a London park and came home with Lyme disease. 12 months on and she’s shared her experience of this debilitating condition with us. 

Lyme disease was something that I had never heard of. Ticks never crossed my mind. Nor did the dangers of ticks. I have always been sporty but I grew up in the suburbs of Dublin so my sporting outings were mostly urban.

Like a lot of people, running and sports took a back seat until after I had my daughter aged 28 in 2014. I started running for fun and fitness mostly around Battersea Park and Clapham Common. This was urban running with no concern for ticks or tick dangers. In 2017 my husband and I took our running up a notch, as we were getting married and wanted to push our fitness. Richmond Park was perfect, a beautiful park with a long loop and some challenging hills. We started doing a weekly run in Richmond Park. We took the outer most route around Richmond to get the most miles in.

On 24 May 2017 we went for a run in Richmond, and it was a really hot day so I wore shorts. We finished the loop along the trail paths, picked up lunch and went back to work. When I got back to work I noticed a small black spec at the top of my leg. It looked like a piece of dirt. I brushed it, it didn’t move. I looked closer and could see it was an insect. At this stage I didn’t know what a tick looked like, so I called my husband to have a look. He knew immediately it was a tick and removed it. This wasn’t a big deal in my opinion and I didn’t give it much thought again. I was looking forward to getting back to Richmond Park next week. I called my mum who immediately told me about the possible dangers of ticks. I started to listen and read up all the information I could online. In my head I thought that this would hardly happen to me. But at least I was now aware.

The next week passed, I didn’t get a rash, I was in the clear! That was until I was hit with a horrible flu. It was out of season for flu so I put it down to being run down. I was also aware that a tick had bitten me and that this could be a result of this. I still went back to Richmond Park and ran with the start of this “flu”.

Following this, the flu symptoms got worse. I felt dizzy and lightheaded on and off throughout the day. Focusing on my computer screens became increasingly difficult. With my eyes going blurry and my head feeling dizzy. I started to wake up in the morning feeling extremely exhausted and with a headache, like a hangover with no alcohol. I would get a sudden sharp head pain especially around the temples. The exhaustion would hit me throughout the day. I started to get a pain in my leg, that travelled. When I was sitting it would come near my calf. When I lay down it would go to my ankle and when I would do sports it would be all through the leg and focussed on the knee if intensity increased. I also started sweating excessively.

I decided it was time to go to the GP. At this point I thought I was run down. The GP agreed. I told her that a tick had bitten me. She asked me if I had a rash. I said I didn’t. That was enough for her to rule out Lyme disease at the time. She said that she would do a test for Lyme, but six weeks after the bite. I went back to the GP surgery six weeks post-bite and had bloods taken. At this point my flu symptoms were gone but I was still feeling dizzy and lightheaded. I was suffering from brain fog and struggled to focus. My eyesight was also struggling. I was extremely fatigued but I put this down to a busy life (mum, business owner, planning a wedding, running, fitness). I still did not think I could have Lyme disease at this point. I was trying but failing to continue as normal.

I ran a 10k race the weekend after I gave bloods and it was the worst experience, my leg ached the whole way around. I sweated like something I’ve never seen before and I felt extremely dizzy for most of the race. I only run for fun and to clear my head. This was not fun anymore. I knew I wasn’t well. When I saw the pictures of my head down and my fist clenched trying to finish a 10k, it summed up how bad I was feeling.

I got a call from the GP the next week to say that my blood test has shown positive activity for Lyme and she was going to prescribe me two weeks of antibiotics. This was a bit of a shock but also a relief to know that there was something confirmed wrong with me. I posted a warning post on my Instagram page for other runners and response I had was incredible. Many other runners had not considered that this could happen to them. Luckily a member from Lyme Disease UK contacted me and pointed me in the right direction for more information about Lyme disease and its treatment.

During my treatment, against all the odds, I trained for and ran my first marathon in October 2017. I don’t know how I did it and for me, maybe that is what kept me strong and able to fight Lyme disease.

In November 2017 my skin broke out in severe acne and my health took another tumble. I got very run down and very sick. I got a chest infection and a bad cough that needed steroids and two courses of antibiotics to shift. I spent January 2018 trying to get better. I started to improve towards the end of the month. I still wasn’t ‘me’ but I was running again and focusing on an extremely healthy lifestyle. I was put on a nutrition plan to help some of my symptoms.

As far as my health goes I am coming out the other side now. I am still suffering with bad neck pain at the top of my neck and base of my skull. Headaches. Stretch marks (I managed to get through pregnancy without any of these!). Blood spots. Blood shot eyes. Apart from these symptoms I am feeling better than I have since June 2017. I feel stronger, my brain isn’t foggy, and I can exercise without feeling dizzy.

To be continued…

Karrie Hill-Hughes