Lyme testing in the U.K?

[justy]

It seems about time i got tested for Lyme, perhaps alongside tests for other co infections. I dont remember being bitten by a tick, but i did get bitten by a horse fly a few months before my serious relapse. Ive just read that other biting insects apart from ticks can transmit lyme and i live in south wlaes where there is a lot of it about.

I know the NHS tests are not considered up to scratch, Dr Myhill who im going to see says no tests are good enough, but i really want to give testing a go, especially as there is such an overlap of symptoms. In fact the site where the bite was flared up with a hard itchy lump which took 18 months to go down, even now it flares up nearly 4 years on when im in a bad patch. I dont know if this is significant or not.

So, where to get the testing done? what have others done who live in the u.k? I cant travel so have to have my blood drawn locally and send somewhere.
Any advice greatly appreciated,
Justyx.

 

[Glynis Steele]

This is a link for the British Lyme Disease Foundation, which may have some useful info on, haven't looked closely so not sure though. Good Luck.

Glynis

http://www.wadhurst.demon.co.uk/lyme/

 

[justy]

Yes ive looked at this link, thanks Glynis, they refer to a yahoo eurolyme group. I guess im so exhausted with researching im hoping that someone who knows will tell me without my having to trwl through loads of info.
All the best,
Justyx

 

[Jenny]

Hi Justy

The Breakspear do various tests for Lyme and co-infections. They use labs in both the US and Germany. I think there are big questions about the reliability of any Lyme tests though.

Jenny

PS Of course you can get a Western Blot done on the NHS - that would be a good thing to do first.

 

[Esther12]

I think it's best to stay sceptical about the alternative Lyme stuff.

The trouble is, I do think that some people will have chronic health problems because of untreated Lyme, and the testing for it isn't great, so you can never be 100% sure you're not one of them.. but particularly in the UK, it will be really rare. Some alternative docs are far too willing to presume Lyme is the problem for CFS patients, without having good evidence that this is the case, and then you can get sucked in to inappropriate treatments, expensive testing, etc. But then... you might feel that this is better than nothing!

Sorry not to be more helpful. I think that it's a difficult one, where genuine uncertainty and quackery often inter-mingle.

Personally, it's not a route I would suggest going down unless you have a good reason for thinking you do have Lyme. Or get tested through the NHS as Jenny suggests.

 

[justy]

Hi Esther, thanks for your reply - yes i do agree that there is no need to presume everyone who has M.E has Lyme, but it seems worth ruling out.

Does anyone have any further information on the idea that lyme disease could be transmitted by other biting insects such as mosquitos or horseflies?

Also please could someone recommend where to get my blood tested in the U.K (or sent elsewhere)
-using whatever is the most reliable method.

 

[svetoslav80]

Most reliable is to make ELISA test first (cheapest, but the most sensitive). If it's negative, you're lucky to know you don't have Lyme. If it's positive - you don't know if you have lyme or not, cause it gives false positives very often (more than 50 % of the cases I think). So if it's positive you need to make either Western blot or pcr tests which are not as sensitive as ELISA. I think pcr test is expensive so you may consider Western blot. But you better talk to your GP about these tests. As to transmitting lyme by mosquitos or horseflies most specialists think there are no such cases.