Where do I get the test?

Hi Gillian

You can see the tropical disease hospital in London or Winchester Travel Health. It is difficult testing for late stage Lyme as the test results could throw up a false negative or false positive. I tested positive on 7 bands of the Western blot from USA but UK don't accept results from abroad. I was just tested in Winchester and came out negative so UK decided I don't have Lyme. I am now wondering, do I or don't I have it as USA say 100% I do and UK saying 100% I don't. The only place in UK that accepts the USA result is homeopathic and expensive.

Have you had thyroid tests done? I am hyperthyroid multi nodular and get all your symptoms + more. Lyme can cause thyroid problems too.

Hi Gillian,

Your GP should always listen to your concerns, without judging you. I suggest you start making a day to day diary of all your symptoms. Find out more about Lyme Disease and how to approach your GP. I suggest you look at the Lyme Disease Action website, which is full of up to date and sensible information that is recognised by Public Health England. Then, make an appointment with your GP and go and talk through how you feel, the tick bite you had and that you want a Lyme Disease test. I have found that if you tell the GP what you want, you are more likely to be referred for a test than if you ask them to make the decision for you. Be assertive, but not rude. Work with your GP and they will usually reciprocate. 

Best of luck, hope you feel better soon.

There are a few really good websites - last time I looked LymeNet was also a good one - I know it's saved my sanity at times.  First of all you should know that the tests are not very accurate.  There are too many strains of the disease, not to mention other tick-borne illnesses, to test against. Also you are bound to have had treatments for this or that in the last 20+ years - maybe a sinus infection or whatnot? - where you were treated with antibiotics.  This can very much skew test results. AND the spirochetes love to burrow into tissue and cells, and not show up in the blood.  (Although the blood tests are for antibodies, not the actual spirochetes, new - ha! - DNA, etc. tests claim to find the bacteria themselves - and in some cases have.)  It is VERY difficult even here in southeast Connecticut, Lyme's epicenter, to get proper treatment without that beautiful bull's eye rash.  It should not be.  Treatment should be based on symptoms, history, and a thorough rule-out of other diseases. Lyme is VERY common. Some doctors will treat you will an experimental course of antibiotics (keep the words "long enough and strong enough" forefront in your mind). But here we have insurance companies constantly harassing our good docs and many sadly turn a blind eye to our suffering.  My tests have been all OVER the place, even within short periods of time, using different labs.  I've really had to fight for treatment - another story. BTW a local man who came back from Germany ill WITH THE BUL'S EYE could not get treated because he tested negative, until some doctor with a brain realized no one here was testing against the German strain!!! There is no excuse for that. Anyway DO keep a diary. Lyme can lie dormant for a long time, so go back to the time you were bitten. Good luck, I know all too well how it is.

Also Gillian - any complications with your pregnancies or concerns with your kids' health? Lyme can be transmitted (don't want to scare you) that way and by breast milk. If they're okay now I trust they dodged it, but something to keep an eye on and when you do find a good testing facility/doctor, maybe get them checked as well.

Hi Gillian,

Push to be taken seriously. Somewhere get the energy or help to persue diagnosis and treatment. I am still so ill, but feel on the verge of getting answers and treatment. Just like you, I was bitten years ago. Once v fit, energetic and healthy I have has chronic inflamamotory arthritis, chronic fatigue, and other nasty health problems. of course GP didn't take me seriously first of all. I have a lovely rhuematologist however that told me catagorically Lyme is not in Britain. Since My first private positive blood test ( tho' 'unequivical') he now conceeds that indeed my symptom history strongly suggests Lyme.  V Important is your own symptom history, which sounds very strong. (Tests available at the chronic stage are so hit and miss). This in itself is good enough reason for you to be treated. I have finally been told this. Have referral to Hospital of Tropical Medcine/ Parasatology Dept. plus am now waiting in ling queue to be seen privately.I believe the clinic also gives the full antibiotic treatment but compliments it with Homeopathy. suppliments if you with. Today on Radio 4 there was a short programme dedicated to Lyme. Tests will always be unreliable at present because they haven't developed tests yet for the bacteria once its gone into the tissues( which I emagine is what happened to us years ago). Tell your GP you have good reason to believe you have chronic Lyme disease. Go with the Lyme Association handout and demand ( nicely) firmly that you get an urgent referral to the Hosp of tropical Desease if your near London, or to the other clinic in Winchester(?). If they quibble, tell them its your life thats being ruined, plus the impact on your work, family etc. By the way, the person on  Radio 4 talked about the need for her to go to Germany to be treated effectively. she is now better. Another person helping me with info, said the same. I will pass on any information I get. Best of luck.

 

I presume a referral to Tropical Disease hospital is the only way people can get a proper assessment and not have to pay. Does anyone have any comments about this or an alternative assessment. 2 years ago I was bitten by a Tic on the isle of arran. After about 6 weeks when the bulls eye fist sized swelling had not gone, I was tested, declared non Lyme and given strong antibiotics. Ever since I have has problems in various areas. All have been things that I had previously felt ill with. Aches, palpitations, and the latest liver function. The deterioration in cognitive functioning has led me to have severe anxiety and to be unable to return to my job- I did get an other less demanding and poorly paid job. I feel everything is conncted but am struggling as people say this is normal for someone of my age 57. I known here is something not right but don't know how to approach this with my GP. I am going for a gamma GT re test in 2 days (had Hepatitis A 30 years ago) and it is as if everyone thinks I am an alcoholic. I have stopped drinking to show I am not but this is another case of a previous illness returning. Has anyone else found this to be the case ( high Gamma GT levels or returning symptons)?