Louise Dean, London

I came down with a mystery illness in May 2011, 2 weeks after a week long visit to a forested national park in rural France where deer roamed freely. I had vague but severe flu-like symptoms that were initially diagnosed as a kidney infection. After the 5 day course of anti biotics I was not better and had many blood tests with nothing showing up as abnormal. I spent 6 weeks in bed, and over a further 6 weeks I recovered, never knowing what had caused it.

4 months later I caught a cold which quickly turned back into the symptoms I had experienced previously, but even more severely. I couldn’t look after myself so moved in with my new partner far away from my step son. This was christmas 2011, and from that point I never recovered. I was bedbound and suffering immeasurably. My GP wanted to pack me off to the CFS clinic but I had read about lyme disease online and 100% knew that’s what it was. She begrudgingly gave me the ELISA test which was equivocal and the repeat negative. Then she refused to consider lyme as a possibility despite me printing off studies that showed how unreliable the ELISA test is. She also told me various facts about lyme which I knew to be incorrect from my own research.

I then went to a private clinic and had the western blot tests for lyme. It was positive on both parts and that together with my textbook symptoms and possible exposure left no doubt in the doctor’s mind what was wrong with me. I decided not to wait 4 months continuing to worsen, to see a NHS infectious diseases specialist to be told that all I needed was a month of anti biotics.

I’ve been on treatment privately for 4 months now and I’ve made huge improvements. The total cost of my diagnosis and treatment has come to £6,500 and counting. I don’t qualify for ESA benefits nor have I had any financial help from family. As a result my partner and I live in shared accommodation which is detrimental to my recovery but it’s the only way we can afford my treatment costs.

If I’d had a prompt diagnosis and treatment when I first got sick back in May 2011, I wouldn’t have lost my health, my home and my relationship with my step son. It’s ripped my life apart. The lack of knowledge of lyme in this country, and worldwide is an abomination.

Current Location: Ilford, London, UK
Infected in: Limousin, France