Lyme disease: Where am I at?

Ten years have now passed since the initial onset of my Lyme disease symptoms, and I’ve been on a learning journey since I discovered its presence early last year. Lyme disease and the complications that have arisen from it have monopolised my entire twenties; a whole decade of my life. But I’m finally treating it now so there is light at the end of the tunnel – it just happens to be a very long tunnel.

Receiving the right treatment from the NHS has been difficult; they are working with outdated treatment guidelines and a serious lack of Lyme knowledge. My GPs have been helpful in making referrals and doing what they can within guidelines, but I’ve had a nightmare elsewhere with unreliable consultants and insufficient appointment systems.

I did make it as far as the Infectious Disease Clinic at Hammersmith Hospital though, and was offered a lumbar puncture to look for Lyme antibodies in my spinal fluid.

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Neurology appointment 1

This time last week I had just had my first neurology appointment. I’d booked the earliest slot available (three months in advance), had chosen my hospital wisely, and had even researched the listed Doctors to ensure I was giving myself the best shot!

I arrived at 8am, was greeted by two very friendly staff members and then had a short wait followed by a 15 minute appointment with the Neurologist who was super helpful and informative.

I listed my symptoms, gave him a brief run through of my medical history and presented him with my test results. He asked a few questions and tested a few of my reflexes. My tremor was active, which was pretty impressive timing and definitely helped state my case!

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Me and Lyme disease: the short story.

Back in February, I was exhausted, ill and all out of patience. The last GP I had presented my troubles to suggested I seek counselling. She wasn’t even willing to discuss the possibility that something physical was responsible for so many seemingly unrelated issues (from migraines to muscle spasms, and some things you won’t want to read about).

So I took to Google with one of my more embarrassing issues and up popped Lyme disease. My mother had mentioned it earlier in the week so I started reading about it. It was all there. Every single problem I’ve had over the last nine years could be put down to Lyme.

“You’ve not been right since you returned from America that second time.” Mum kept saying, and she was right. One morning, soon after returning from New Hampshire in 2007, I’d woken up feeling like I’d been hit with flu, my face covered in white pustules and a thick oily slime. I was retaining water everywhere and had rashes on my elbows and knees. I felt hideous!

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