Lymes disease online tests.

[Jon and Jen]

I have repeating flu like symptoms, joint pain and general exhaustion which comes and goes. I have had a lot of tick bites. I have previously had an nhs lymes test after a lot of investigation into my symptoms. It came back negative but the symptoms persist. This has been going on for a couple of years now and symptoms appear to be getting more regular and worse. I have read the nhs tests are unreliable and that I should get a private test but I've also read from the nhs the opposite.
I am looking at online tests but don't want to waste money or get a wrong diagnoses. Has anyone got any experience of this that could offer advice please. It's really affecting my day to day life now.

[Giant Stoneater]

This link maybe of some help

https://lymediseaseuk.com/lyme-disease-testing/

[Sgurr]

Or ME? No proper test for that either.

[WalkWithWallace]

I would go back your GP and insist on further investigation / referral / antibiotics. I hope you can get to the bottom of it, as it sounds like you do have Lyme Disease.

Hope Covid-19 hasn't delayed the vaccine for Lyme.

[Mal Grey]

I can't add anything really, but a mate of mine's daughter had symptoms for a long time, tested negative from the NHS, then paid for a test which came back positive. My memory says it was one of the German sourced tests, but I'm not sure.

Don't let the GP off the hook. Keep pressing for more testing.

[nigheandonn]

Do you have a carbon monoxide detector? Although that would be more likely to get worse in winter and better in summer, I suppose.

[Girl Outdoors]

Be aware that lyme tests are fickle at best. There are several of them and they work differently. Depending on which type there is a fairly high prevalence of false positives or negative and the serology gets confused over time anyway. It seems that the only way to get an accurate handling of the issue is to have a several and form a consensus something most NHS clinicians are unwilling to do. Long term lyme disease is something that the NHS does not seem to want to acknowledge yet unfortunately.

There is an excellent Lyme disease UK Facebook group which has a lot of good information and experiences on it . When I contracted Lyme disease I was very frustrated about the lack of concern from NHS specialists and did not want it to develop into long lyme diseases which can be debilitating and difficult to eradicate. So after my initial two week doxycycline prescription (which is not really adequate anyway) I purchased my own for two months to knock it out for good. Dont mess with this. Good luck

[ChrisButch]

Hope Covid-19 hasn't delayed the vaccine for Lyme.

Vaccine for a bacterial disease??

There is a vaccine for the viral tick borne encephalitis (TBE), which has steadily been working its way west from its endemic location in Siberian forests over recent decades (already into parts of the Alps and souhern Scandinavia). It seems only a matter of time before it gets here. The recent PHE guidance on Lyme says there have already been one or two confirmed cases of TBE in the south.
If ticks are nasty and Lyme nastier, TBE is seriously nasty.

[davekeiller]

Yes, you can get vaccines for bacterial diseases.
BCG vaccine for tuberculosis being a good example.

[Jon and Jen]

This link maybe of some help

https://lymediseaseuk.com/lyme-disease-testing/

Thanks. Will get reading.

[Jon and Jen]

Or ME? No proper test for that either.

Not sure ME comes with flu like symptoms and joint pain?

[Jon and Jen]

I would go back your GP and insist on further investigation / referral / antibiotics. I hope you can get to the bottom of it, as it sounds like you do have Lyme Disease.

Hope Covid-19 hasn't delayed the vaccine for Lyme.

They really don't seem interested tbh. Oddly. I had a course of antibiotics not long ago for an unrelated issue and I was like a new man for a few weeks. I think this started when Jen pulled 50+ out of me after a trip to arrocher. I went to the doctors then to ask for a preventive course of antibiotics but they told me there was no need.

[Jon and Jen]

Be aware that lyme tests are fickle at best. There are several of them and they work differently. Depending on which type there is a fairly high prevalence of false positives or negative and the serology gets confused over time anyway. It seems that the only way to get an accurate handling of the issue is to have a several and form a consensus something most NHS clinicians are unwilling to do. Long term lyme disease is something that the NHS does not seem to want to acknowledge yet unfortunately.

There is an excellent Lyme disease UK Facebook group which has a lot of good information and experiences on it . When I contracted Lyme disease I was very frustrated about the lack of concern from NHS specialists and did not want it to develop into long lyme diseases which can be debilitating and difficult to eradicate. So after my initial two week doxycycline prescription (which is not really adequate anyway) I purchased my own for two months to knock it out for good. Dont mess with this. Good luck

That's why I'm asking about the tests, so much conflicting info. I considered buying antibiotics myself at one point.

[Scottk]

I went back to our surgery after testing negative and got another test which came back with a flaky result but the doctor was concerned enough to get a 3rd test done and put me on antibiotics. The 3rd test was positive.
I had felt pretty poor for a couple of months with sore fingers, pins and needles in my hands, generally very tired and no energy. 3 weeks of antibiotics did the trick.
I think the worst thing for me was seeing the infectious disease specialist afterwards and when he saw the rash which my wife took a picture of, he turned to the trainee doctor and told them that as soon as you see that, start treatment and get a test. If my surgery had done that, I would have not had to go 3 months feeling rotten.
Push them for another test.

[Girl Outdoors]

That's why I'm asking about the tests, so much conflicting info. I considered buying antibiotics myself at one point.

The point I'm making is that the tests alone don't seem to provide a definitive answer in a lot of people. You may have to to treat on symptoms alone. Its great if you have a GP or specialist who is on board but unfortunately its rather hit or miss whether you get one. If you still have symptoms personally I'd start treatment with Doxycycline for a couple of months before the spirochetes embed too deeply and longer term complications arise.

3 weeks of antibiotics did the trick.
I think the worst thing for me was seeing the infectious disease specialist afterwards and when he saw the rash which my wife took a picture of, he turned to the trainee doctor and told them that as soon as you see that, start treatment and get a test. If my surgery had done that, I would have not had to go 3 months feeling rotten.
Push them for another test.

You are lucky that three weeks did it! The max of two weeks the NHS would give me made a serious improvement but did not completely knock it out. That when I took matters into my own hands and continued the script myself.

Your description of the IE specialist sounds very positive. After three weeks or so of feeling ill and treating severe joint pain with voltarol I was on holiday when I noticed the classic "bulls eye" rash. I photographed it for evidence in case it faded before I returned. My GP was 50/50 on it and willing to prescribe for 2 weeks. The IE specialist at a major teaching/research hospital was dismissive saying "it could be a number of things" and "lyme didn't exist in that area". She then turned to interrogating me on where I had purchased antibiotics from.

Please everyone if you get symptoms take this very seriously and dont be fobbed off! Easily treatable in the early stages, not so later on.

Two positives though:
1. Not all ticks carry lyme and there are problem geographic clusters. Some areas are and others not.
2. From what I read the ticks have to be embedded for quite a few hours before bacteria is released so showering/getting them out immediately on return should protect you.

Despite all the above i will not let this spoil my enjoyment of the outdoors!Although my consumption of strong insect repellent has dramatically increased