I am currently diagnosed on the NHS with fibromyalgia, chronic fatigue and IBS. I began to suspect Lyme was my issue in 2015. I’m 36 now, and on researching Lyme, realised I have been experiencing symptoms since I was a child. As a teenager I suffered bouts of wry neck, recurring sinus infections and tonsillitis, migraines, TMJ, and random breast milk production, which resulted in mastitis. At this time I had no children and my GP’s were baffled. I went on to develop digestive issues in my early 20’s, I had stomach ulcers, then gallstones, I had my gallbladder removed at 25.
I always worked or studied, I had been a dental nurse, oral health educator, and then completed a BA (Hons) in Fine Art. As I hit early 30’s I began having bouts of shingles, which would reoccur mostly in the winter initially. As the years went on I was able to do less and less. I had managed to be very active, and I owned a dog walking business. At the time I didn’t know what was wrong and thought, if I got as fit and healthy as I could, being in nature everyday, surely I would feel better. But by 2015 the shingles were coming so frequently, and neurological symptoms crept in, I couldn’t feel my face, my hands, or feet. My balance was so bad and I was so clumsy. If I was tired I slurred my words and couldn’t think.
I remember at my worse being in the shop, not having a clue what I was supposed to do, a list clutched in my hand, yet I didn’t have the ability to figure out what I was supposed to do with it. I couldn’t count coins to pay, I could see them, but I didn’t know how they fitted together to make the sum I needed. Just a few years ago, I was writing my dissertation.
My eyesight deteriorated very quickly, I couldn’t wear contact lenses anymore, and even with glasses my vision was blurred with floaters and weird flashes. I spent all day in crippling pain, hardly able to move, and then night would come, with the insomnia.
I just don’t know how anyone can function like that for any length of time. Everything around me was affected too, my daughter had to grow up with her mum being too sick to be a mum, my husband had to carry us all, and my friends and family were either amazing or left.
After John Cauldwell had been on the news talking about Lyme, I began researching, I scored high on the Horowitz questionnaire, joined a few Facebook groups and found that there are others with Lyme experiencing recurring shingles! I just knew this was the answer, my medical history read like the list of Lyme symptoms.
I went to my GP and told them I’d figured it out, I was told that Lyme is rare (I live in the Highlands) that it’s probably not that. They gave me 2 weeks of doxycyline and ordered a test, which came back negative.
I knew this test was unreliable. However, by that time I had sold my dog walking business, as I wasn’t able to keep going with it. And so I couldn’t afford private tests and treatment. I was distraught, how can I be so sick and get no help, no support, no understanding from anywhere, except a group of strangers online.
I bought books and researched, sure there must be a way to get well. I eventually stumbled across bee venom therapy, which has helped me a lot, thank goodness. I’m back on my feet and though I’m far from well, I am getting better very slowly.
I was told at my GP to accept my diagnosis of fibromyalgia and chronic fatigue, that there are no answers, and that I just have to live as best I could with my symptoms. My heart breaks for all those who listen to this advice. If I had listened I would still be in my bed, taking a multitude of pain and mood meds, being a burden for life.
The suffering of this disease is immense, and people in all walks of life have so little understanding. People need access to reliable tests and treatment.