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Lyme Disease?

Hi. Any thoughts / similar experiences welcome.

I followed link on here about a woman who was misdiagnosed with MS for 3 years. She was even given DMDs before antibiotics cleared her symptoms completely and she was retrospectively diagnosed with Lyme Disease. I may be clutching at straws / being an ostrich but I’m really wondering if this is the same for me.

I had my first episode of presumed demyelination in 1999. Right hand side numb, tingly weak etc. No scan. Completely resolved and ‘MS’ was never mentioned.

I was then bitten by something in 2005. Given amoxycillin but was allergic so changed to another antibiotic and on it for a month (couldn’t go out in the sun in August!) which gave me really bad diarrhoea. I had the circular swelling around the bite but the blood test for Lyme Disease came back negative.

Then had second relapse in 2008, in right side again and similar but didn’t resolve completely.

I was bitten again in Ibiza in 2008 and again had the circular swelling. It swelled up so much the Spanish pharmacist thought it was a jellyfish sting! Given OTC antibiotics in Spain for about 2 weeks.

On return from holiday numbness and tingling etc led to back MRI then brain MRI which showed lesions and had a lumbar puncture which was positive for oligoclonal bands. Finally diagnosed with MS in 2010. Apparently both reasons for my dx are possible indicators of Lyme Disease too. The two conditions are often mixed up according to what I have been reading today.

Sorry for being long winded. My question is - is it worth asking GP for the more accurate test for Lyme Disease? I’m 99% sure I was bitten by a tick. The GP certainly thought so at the time (first bite).

Could my symptoms be down to Lyme Disease that resisted treatment? Did the antibiotics not work properly? Or is this all just wishful thinking on my part?

Ann xx

its worth asking, you might already have been tested and if not, easy to arrange. just be aware that some gps and nureos might try to fob you off. but you have a right to know. i think its more common now to test for it in the first place to rule out everything

Yes I heard a lot about people being told it was MS and was Lyme disease I know the bite looks a lot different from any old bites and lasts a long while it is called a bulls eye so massive red patch with red circle around it, I can’t ever remember seeing this on myself but I have wondered and heard that people in country’s that gave to pay for treatment were fogged off because they can make more money off MS treatments. No harm checking I can’t say I never wondered.

you don’t always get that red rash when bitten by a tick with lyme disease, its not as common as people think. so if you notice a tick bite, and live in an area where lyme is common, its worth getting tested.

I was told they have been found around UK Nigel long ago eeep

Not long ago

I definitely had the bullseye bite. Still sone residual redness in that area years later - I think the swelling damaged blood vessels. I’m going to discuss with GP at next apt. She’s pretty open minded so hopefully she’ll be able to order a blood test.

Thanks for your replies.

Ann xx