I am Annette, 53 yrs old with 3 children and 4 grandchildren. I stay in a small village in Fife, where I was bitten. I loved my job as a social care worker and enjoyed a full and active life. My favourite time was walking my dog 4 miles each day along the beach then heading back through the fields.
I caught my worst ever “flu” in February 2016. I literally could not move from bed and felt VERY ill. After 3 weeks I improved a little and my husband noticed a bullseye rash on my bottom. It wasn’t sore or itchy and I dismissed it. A few days later the rash became infected requiring the nurse at surgery to dress it frequently. I still have the rash which is ring shaped and blue in colour. During this time another EM rash appeared on other buttock which disappeared soon after. I felt so ill with all over muscle/tendon, bone and joint pain, back and neck pain the worst with exhausting fatigue, the rashes were least of my concern.
Neurological issues crept in and I couldn’t remember the end of sentences, where I was going, or what I was doing. In the evenings, my muscles would jerk and twitch. I itched all over with electric shock like pains in the pores of skin. As the weeks progressed, my pain intensified and many nights I slept crying with neck and back pain on the living room floor or passing out with exhaustion outside the bathroom after being sick. Insomnia increased until I literally didn’t sleep for days on end. I was breathless on exertion or lying down.
My new life had begun. I was attending my GP with new symptoms nearly every week, interspersed with tests from many consultants. All tests were and still are negative. I finally received a diagnosis of fybromyalgia and osteoarthritis. I became sensitive to pain medication. As the months wore on I became sicker, spending long periods in bed. I developed horrific migraines and eye pain which has left me with double vision and bluriness. I was attending A&E regularly with no help or diagnosis. My temperature was all over the place, either sweating or freezing. My scalp, face tongue and throat were numb and had tingling sensations all over. I had several antibiotic treatments for strep throat.
I decided it was time to research further and read about Lyme and the penny dropped. I showed GP a photo of my rash which my daughter had kept but tests on NHS were negative. Private tests in August 2017 were also negative for borrelia but positive for the co-infections of bartonella, CPN and coxsackie virus, which are common with Lyme. My GP wrote to Dermatology with photos of my lumpy, bleeding and painful elbows to determine if I have atrophican dermatitis. I have yet to hear from Dermatology. I still haven’t received any treatment for lyme or co-infections from anyone within NHS.
I am now medically retired through ill health, I can’t help out with my grandchildren anymore, and barely go out socially as I usually have to leave shortly after arriving. I have recently attended a private herbalist who is working on building my immune system (Lyme has literally turned mine off) before addressing Lyme and co-infections. It is wonderful to have someone apart from my daughter who truly believes and supports me.