I’m going to attempt to make a long story short. What I’ve been through is neither uncommon nor exceptional…it’s sadly commonplace which, in a way, makes it all the worse.
I was around fourteen when I was bitten by a tick that was infected with Lyme disease and co-infections. I was blissfully unaware of having ever been bitten – which is more common than you’d think as a tick bite is often painless. I developed a severe summer cold but, as I’d never heard of Lyme disease, I thought nothing of it. When I returned to school after the holidays, I discovered an alarming number of symptoms ranging from joint and bone pain, fatigue, headaches, stiffness and aching in my back and neck, to issues with my memory and general cognitive function.
I spent two years going back and forth to my doctor and was diagnosed with a number of various ailments…none of which I had. Over those two years of continued misdiagnosis, my illness was left to run rampant throughout my body. The number of symptoms I had was baffling and dizzying and they grew so be so engulfing that at sixteen I had to drop out of school because, by the time I came home from school each night, I would be struggling just to walk.
I was referred to the hospital, by which time I was completely housebound, and yet again I was bandied about for years from one doctor to another and from one department to another and all the while I slipped further and further away from the lively, chatty, energetic teenager that I’d been. I became a shell of the person that I was. The girl who got up at 5.00 am to go running with her dog, who would go horse riding for eight hours straight at the weekends and walk up munros with friends for fun was gone; replaced by someone who barely had the strength to lift the kettle to make herself a cup of tea. The girl who was going to go to university with a brain as tireless and as bounding as her body now could hardly form the words needed to hold a conversation.
I was eventually diagnosed with ME/CFS, an umbrella symptoms, and was felt to fend for myself. I was very fortunate though, in that my mother is a nurse and she knew that there was something more going on that the hospital would have us believe. She devoted every free moment that she had to research hundreds of illnesses with had any association with my symptoms…ruling them out one by one. But, there was one illness which fitted every symptom that I had and that was Lyme disease.
My mother took me back to the hospital, armed with folders of research, to fight my case. Like so many others with Lyme disease though, we hit a brick wall of denial. Despite all the reseach my mother had to prove how unreliable to blood tests are for Lyme disease, we were told that I couldn’t possibly have Lyme! We, and by we I mean my mum as I could bearly function at this point, demanded a second oppinion out of area but yet again I was told I couldn’t have Lyme.
With mounting concern over my health, as I was becoming increadingly bedbound, my mum took me to a private hospital. It was there that I diagnosed with Lyme disease and several co-infections – by blood tests which were sent to America and Germany.
From there I have been on around ten years of treatment to get me to where I am today and I still have a huge way to go.