My meningitis (andME) was caused by lymes disease

[VMroom]

Anybody with bacterial meningitis been tested for lymes disease? Or did you have suspected viral meningitis and nothing was detected for proof? I was the later, lymes is not routinely tested on NHS and now I have a positive lymes test after being diagnosed with ME last year and having been totally bedbound since February this year.

It is good news as I might be able to cure myself, how amazing would that be. BUT the NHS don't recognise, understand or treat late stage lyme so it's private doctor, private blood tests and private treatments which may or may not work. I could have years ahead of the same before I recover.

I've since found out from Meningitis Now that other people with meningitis have found out they have lyme. Many people diagnosed with ME, fibromyalgia and MS all developed their symptoms because they have lyme and for most it remains undiagnosed because it is so hard to detect. The NHS blood test is a 2 stage test which usually only picks up recent lymes so most people test negative. If you pay for testing privately (eg Atmin labs in Germany) the NHS doesn't accept the result. There are no lyme literate doctors in the whole of the NHS so you're on your own.

I don't remember a tick bite and I've never had the bullseye rash, only 50% get this and tick nymphs are tiny so easily missed. If you suspect lymes or are curious check out lymediseaseuk. It has all the info you need, its fascinating and also a minefield if you believe you have lyme. As the climate warms airborne diseases and ticks are on the rise. Lyme is now epidemic in the US with 300-400,000 cases per year. In the UK about 5,000 are reported but these are likely early onset with the rash so goodness knows the true number.

[Hidden]

I've looked into this, had the test for Lyme's and one of the markers test positive but this - according to those who supposedly know - was only indicative that I had some sort of an infection some time in the past and we've all had these sort of infections!

I considered going to German labs but didn't because of the problems you've outlined above. It leaves people very much in the dark.

Good for highlighting it.

[VMroom in reply to Hidden]

I outlined the issues so if anybody chooses to investigate for themselves they have an idea of the battle ahead to evaluate if its worth it or indeed they can afford to persue it. I didnt know of the connection between meningitis/summer flu before my lyme diagnosis nor had I heard of lyme disease so felt the need to share.

For me being ill for 13 months and bedbound over 5 months with little possibly of recovering, tackling lyme at least gives a glimmer of hope for recovery. I can't continue to have my 70yr old mother look after me indefinitely nor do I want to be an absent mother to my son any longer.

[Frodo]

I think Lyme Disease should be ruled out in ME / CFS but unfortunately, as you say, doctors are not Lyme literate and the tests are not fit for purpose. I suggested Lyme to one GP in recent years who was utterly scathing. Yet when I was first ill, a long time ago, I'd been living with my parents who walked their dogs on tick infested land and regularly picked ticks off them. Although I was aware of the ticks, I didn't know anything then about Lyme Disease. And clearly the doctors I saw at the time didn't either.