Living with Borreliosis (Lyme disease)

Lynn and Eve's Story

I have been unwell in varying degrees since I was 13 years old. I was admitted to hospital aged 13 with suspected meningitis and secured in an isolation ward as a precaution for any transferable infection. Tests were carried out and nothing discovered, despite the fact I was unconscious and extremely unwell. Once home, I had severe daily migraines, confusion, vertigo and hyper-sensitivity to noise and light. At school I could no longer concentrate properly. I often required time out from class activity and found working in a quiet room or the library easier. Walking home left me exhausted and I couldn't participate in sporting activities without feeling ill.

My parents tried to find out the cause. I saw numerous psychologists and counsellors, none of which made me feel better, and I was diagnosed with depression.

As I got older, more symptoms appeared. Were they connected I wondered? I had severe muscle pain, extreme fatigue, eye problems and I felt at times my heart was stopping. As each year passed, more symptoms appeared. After the birth of my first, then second, child I became so unwell I was moved to a wheelchair-accessible bungalow. Neurologists, rheumatologists, psychologists, not one could tell me why. All blood results were returned as normal, except an increased white blood cell count but the reason for this was a mystery.

My diagnoses ranged from M.E., C.F.S., to Fibromyalgia, to depression and back again. In April 2009 I decided to see a private Neurologist. He had a strong interest in M.E. I discussed with him the cyclical nature of my symptoms, and the fact I was so disabled now I was afraid of what would happen to me next. He ordered blood tests through my G.P.

In June 2009 my GP visited me at home. He said I had tested positive for Lyme disease. He asked me if I had ever been bitten. I replied yes, on several occasions. I had wondered if Lyme disease may be to blame but had so often been told my blood tests were normal. I didn't know Lyme disease had never been previously tested for. I had never had the typical bull's-eye rash but I soon learned that it doesn't always occur.

I questioned if it could pass to my children and I was initially told no. I felt strongly, however, this was a potential issue. My oldest daughter, Eve, had the classic rashes from 3 days old onwards. I was very concerned that a tiny baby had such unusual rashes whilst still in a maternity ward.

I reported one of these bull's-eye rashes (which became common place) when she was slightly older. Sore knees, headaches, sore muscles followed; all were reported. At no stage had she been offered a test for Lyme disease.

Following my own diagnosis, Eve also tested positive. Her results came back 3 days after she started High School in August 2009 (just weeks before her 12th birthday). We were naturally devastated but I felt relieved she had a diagnosis and would not need to search for years, confused and frightened, as I had been.

My second daughter’s first Lyme disease test was returned negative. However it is very clear that she has more symptoms than her older sister. In agreement with our doctors, she is going to undergo further tests for Lyme disease.