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Receiving the right treatment from the NHS has been difficult; they are working with outdated treatment guidelines and a serious lack of Lyme knowledge.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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So what is Hyperbaric Oxygen Therapy and how does it work?

I have been attending the MS clinic in Aylesbury for hyperbaric oxygen therapy (HBOT). An NHS approved treatment where you breathe 100% pure oxygen under an increased barometric pressure to improve oxygen saturation. In the oxygen chamber, once you are hitting the max, the air pressure is around 33 feet below sea level. In general, the air we breathe normally contains 21% oxygen and the pressure level around you is dependent how far above sea level your location is. So HBOT provides a dramatic difference.

What are the benefits?
By increasing the pressure around you, oxygen is more effectively carried into the cells of your body. The benefits can include: Continue reading “So what is Hyperbaric Oxygen Therapy and how does it work?”

Waiting for answers

My MRI was back in June. June 17th to be precise. I was in the machine for 45 minutes whilst my brain and c-spine were being imaged.

Four weeks later I still hadn’t heard anything – I called the neurology secretary but there was no answer. I left a message but no one called back. Eventually around week five I managed to speak with someone.

I was told that my neurologist, busy man that he is, wouldn’t be looking at my results until the first or perhaps second week of August.

I wasn’t to worry because anything troublesome would be flagged and I’d have been contacted immediately.

Here’s the thing: a seven week wait?! Seven weeks? Even after he’s reviewed them I’ll be left waiting for a letter and a follow up appointment.

I have four more scans in the pipeline, a referral to an infectious disease doc and a lumbar puncture on the horizon. If there’s this long a wait in between things it’ll be a good 18 months before I’m receiving any kind of treatment surely?

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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!

Continue reading “Me and Lyme disease: the short story.”