I was a fit, healthy mother of three children living in Edinburgh. In 1993/4 I was on holiday in Sutherland. I had a tick attached and was unaware until a friend noticed and whacked it off my leg. Unfortunately, by this time it was bloated, satiated and leaving anyway. I knew nothing about Lyme. My friend had no idea it had been attached. I actually thought that as I had no beastie bite reaction that nothing had happened.
Some time lapsed and I was home again when a perfect bullseye rash appeared on my leg. Visually fascinating in its perfection. I showed to loads of people. No one, including myself thought, “classic Lyme bullseye rash”. Not one of us had heard of Lyme or knew the significance of the rash. It was not angry or itchy and I did not associate it with the tick bite incident which I had already forgotten about. The rash faded.
Some time later, days, weeks, not months I became extremely ill with a flu from hell and back. It was like flu, gastric flu and meningitis all at the same time. I could hardly lift my head from the pillow. I reached the bathroom holding on to furniture or crawling on the floor. Good friends rallied round to look after the children.
A request was made to the GP surgery for a home visit. The GP who came would not examine me and kept his distance and failed to disguise his disgust at the noxious odours which erupted from my tortured body and filled the room.
I was informed that I had “a summer virus” and should visit the surgery when I could be bothered to get out of bed. Disgraceful and unprofessional behaviour but I could do nothing but peer at him with my head pinpointed to the pillow and too weak to respond. But, I believed him!
My friends supported me, looked after me and my children as I very slowly had to recover my strength and learn to walk again.
My first “healer” was a friend of a friend who spent an hour with me each week doing reflexology while my friend looked after my children.
I thought as I had not recovered completely that I had “Post Viral Syndrome”!
During the following years I tried everything from aromatherapy to yoga, meditation and tai Chi. I took multi vitamins, supplements, aloe vera, anything and everything which might help me towards a full recovery.
I could no longer do what I had done before and my activities changed to the yoga and tai chi and I had to give up on swimming completely. I learned to walk again and managed one hour each week round Arthur’s Seat, Edinburgh brisk walk, clamber and March.
It happened in the summer and I was able to return to my part time teaching job. I worked three days and recovered four days and presented as a well person at work. I hid my illness. Mainly because it had no name.
My local health centre GPS had known me fit and well so over the years when I presented with a variety of symptoms I was treated with respect and tests were carried out and I was always clear. I was the healthiest person I knew according to test results except I knew I was really unwell and my symptoms were real.
In 2004 I read an article written by Amy Tan. It was in a collection of articles and the last in the book. It was that moment of epiphany, I recognised myself in her description of her journey to discover that the cause of her chronic ill health was LYME. The real moment of realisation was reading about her description of a BULLSEYE rash. First time I ever heard about it and I knew finally what was wrong with me.
I went to the GP. As usual they took blood to test for Lyme. The result was negative! So wrong again. Whatever was wrong it was not Lyme!
It took about another ten years to understand that you can be infected with Lyme without a rash but you can’t have a bullseye rash without being infected with Lyme.
By this time I was medically retired with a CFS diagnosis. Raigmore acknowledge the rash and the history but infer I am not infected with Lyme as serology is negative. They continue to attach a CFS label to me. No treatment from Raigmore for Lyme.
I relapse and recover but never fully and now in my sixties it becomes more and more difficult especially as my husband was infected with Lyme a few years ago.
At my worst I am bed ridden. At my best I climbed The Brighthorn, an Alp, at the age of fifty and managed to knock off a dozen Munroes.
Still marching, still hoping for a miracle cure!