Lyme Disease

[Hanneke]

Thank you David. Very informative.

I'd like to add a few more things here. I didn't go into too much detail in my original post.

I am not criticising my GP, I am just trying to get links, hints, tips to being better informed as to what action to take. It is my rapidly declining health we are talking about. Within the timespan of a year I have gone from a very fit and healthy person who won MTB races on a national and international level to a wreck who can barely walk!

I have been seeing my GP so much, I have practically moved in and he has been doing his job. We have differentially diagnosed till the cows came home until we got to the likelyhood of Lyme's Disease. Hell, I display 95% of the symptoms on the GP checklist so I am hardly imagining things. No, I did not see a tick, but that doesn't mean there never was one. No I didn't see a rash, again, that doesn't mean there never was one. It could have been under my hair, or on my back. Yes I did have flu like symptoms, but they were put down as just that, flu like symptoms. Not everyone sees a tick when they are bittem. The nymphs are very small and the tick could have come off unnoticed within a layer of mud scraped off my legs after a 12 or even 24 hour race... Not everyone with Lyme's gets a rash either.

I am aware the serology isn't accurate. A positive test doesn't mean active Lyme's as one tests for antibodies, depending on the test protocol used. A negative test doesn't necessarily mean I don't or can't have it either, but it is the step my GP decided to take first and I respect that and am grateful for it. Once the test comes back, he said he'd refer me to a specialist in infectious diseases, as he is out of his depth. In the meantime, as test results take 4-6 weeks to come back, I want to gather as much information as I can to be as best informed as I can be. Frankly, I could cope with the pain and lack of sleep and other symptoms, however the recent neurological symptoms scare the shit out of me and my GP!

I am not a member of patient groups. I prefer to do my own independent research and am not easily lead.I have avoided looking at forumes etc because I prefer a nuanced, informed opinion. Reason why I asked for experiences on here, as I was hoping to get some good advice from those with personal experience of the condition and its progress/treatment. I was right, I have had some very useful private messages.

I know from facts there is Lyme's here in the Black Mountains, where I live. I would also like to point out that I have ridden and raced my bike all over the country and abroad, including the whole of Wales, Scotland, the Lake District, Exmoor, Dartmoor,Hampshire, Peak District, Yorkshire, Shropshire and the Isle of Man. Chances are I picked up a tick at least once. I rode on average 15 hours a week, racing and training...

I am also aware Lyme's is largely undiagnosed or mis-diagnosed, so statistics aren't realistic and it is much more prevalent than most people, including healt care professionals, think.

I don't think you are being negative, you are realistic and painting the picture of what the health care system has to offer. Which, sadly, doesn't seem to be an awful lot