There are lots of cases of Lyme disease here in the Southwest. I’m informed it’s partly because ticks are more often arriving on migrating birds because of climate change. My Borrelia burgdorferi (Lyme disease) infection wasn’t picked up quickly enough and the infection entered my cerebrospinal fluid and brain.
An atypical Lyme rash
I want to stress that the horrendous delay between bite and diagnosis occurred because I didn’t have the typical bull’s-eye rash! In fact, it looked nothing like a bite at all! Rather, it looked like I’d been hit by a baseball bat. A huge lozenge-shaped bruise appeared under my shoulder blade overnight and over the coming weeks the rash and the area around it started going numb. Over the next 2 months, the numbness grew from my spine around to my belly button.
When the rash first appeared, I went into Boots chemist in Sidmouth and requested a consultation with the pharmacist. They had no idea what had caused it but sold me a hydrocortisone cream, saying if it hadn’t gone in a week, to go to the doctor. It didn’t go, so I duly made an an appointment to see the nurse at my surgery. She had no idea what had caused it and she even called in my GP to look at it. They had no idea between them. They did take photos however.
I was prescribed another cream and told to come back in 10 days if it hadn’t gone. No change occurred. They issued another 2 prescriptions for different creams and after that she said ‘… just keep an eye on it and come back if it causes you any further problems’. At this point, over my abdomen I also had several dots of a leopard spot type rash, as well as the rash under my shoulder blade.
A few months later, excruciating pain arrived and with the numbness around to my belly button and electric shocks in my hand, I started visiting A&E and my GP to push for a diagnosis.
Multiple misdiagnoses result in worsening disease
In late November and early December I had 4 visits to my GP and 4 to A&E begging for tests to find the root of my pain. I’d almost forgotten the rash because it happened in August, but I brought it up nonetheless.
NOT ONE doctor joined the dots of rashes, numbness, unfathomable pain, electric shocks in my hands and more. They misdiagnosed costochondritis, radiculopathy and pleurisy. It took a senior consultant at A&E to admit me for a wider range of tests and to connect me with a neurologist before Lyme disease was finally diagnosed via a deeply unpleasant lumbar puncture.
Lyme is rare. Lyme is horrendous when it gets to the brain. Lyme can be fatal. BE LYME AWARE!