Does anyone know where I can get a private Lyme disease test in UK?

I think I need the test where they look through the microscope for the actual bacteria???

Really sorry but I know I've been given a lot of info on this before but I can't find it anywhere.

I haven't been on here for quite a while as I've been coping on T3 and just trying to get on with my life after years of useless tests and doubting doctors. However, I'm concerned the T3 won't work forever and is still masking the problem I'm also still unable to do any exercise that increases my heart rate and seem to relapses when menstruating and under stress.

Lyme was suggested to me several times and I still think it might be the answer for me. I was tested on NHS but even the doc said a negative result isn't alway conclusive. I'm now able to pay for a private test but want the most accurate I can get but can't seem to find exact information on where to go and what needs to be done. Any help is much appreciated. Thank you :)

52 Replies

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  • Have you come across this Den - they have a phone number and speaking to someone is always better than communicating over the net - well that what I think anyway.

    breakspearmedical.com/files...

    I'll have another trawl around the net and see what else I can come up with.

    Moggie x

  • This one look good as well and its says Europe.

    boulderdiagnostics.com/eu/?...

    Moggie x

  • Thanks Moggie!

    I did see these two but just wasn't sure as there are no prices as such and don't want to have some irrelevant test and get ripped off. I didn't know if there was somewhere anyone could recommend just to be sure. Also initially I was thinking I needed the Western Blot test but have now read that's also not very reliable and the only reliable one is for them to look at a sample through a microscope to see the lyme bacteria.

    Think I'll contact those two though Moggie and see what they say. X x

    Actually just looked at breakspear consultation prices!!! I just want the test, no consult so have emailed them to see if they offer this :)

    And found prices for the other one right at the bottom, so have emailed them as I'm not sure what test they're offering :)

  • Hi All reputable tests are available through Blue Horizon, main site. They do a lot that NHS do not, and some tests are better. They are used as TDL by almost all the private hospitals.

    Best wishes,

    Jackie

  • Thanks Jackie but it seems they only do the standard blood tests, followed by the Western Blot if there's a positive result. This is the same as the NHS unfortunately. Thank you for the suggestion though :)

  • Hi Did you look on their main site, on the WEB? Not the thyroid one? I would say that if they do not do it ,it is unlikely to be reliable. There is another site that my hospital also recommends

    Called "Lab tests on line"Problem is if you do not use a recognised Lab , no medic will treat on the test. I would e mail, Paul Harris at Blue Horizon. He is also a member of TUK

    Jackie

  • Hi Jackie Sorry, have just seen this! I think I looked on the main site but have now emailed them for advice and to check what they offer. Thank you for all of your advice and hopefully I can get somewhere with this soon :)

  • Good Luck! Jackie

  • Hi medichecks.com does it,they have 2 different tests available. And it's a British based company.

  • Hi Kezza999 and thank you.

    I see they offer the Elisa and the Western Blot but I have read both of these are unreliable :( The other tests I've found seem to be unrecognised, so I don't know if I can trust them or not. Maybe I should just try the Western Blot and just give up if it's negative, it's a lot of money though especially if there's no guarantee it will be accurate. Why is nothing straight forward.....lol

  • Hi DeniseR, I was wondering if you got any further with this. I'm looking into this for my boyfriend who has all the symptoms of Lyme disease but the NHS test came back negative. We're trying to find somewhere to get a private blood test done but struggling to find the right place to go. Any help you can give us would be much appreciated. Thank you

  • Hi Kymp85

    I'm afraid I didn't get much further after enquiring I was told that there is no conclusive test for Lyme. there are lots of different options but some will only do further testing(such as Western Blot), if the the initial blood test is positive, to confirm. And as I said, none of the test including Western Blot is 100% reliable. I'm managing still and reasonably well with T3 but am definitely not cured. This means though that I am able to live my life pretty fully once again and have learnt the signs before I get ill, so I can stop it. My illness only really shows itself now, if I overdo it, exercise more than a little, am stressed or hormonal(women's stuff lol). So I still believe there is something else going on as the T3 hasn't made me 100% well.

    I hope you can find some answers and sorry I couldn't really help. x

  • Hi, Hopefully you will have found the information you needed. I haven't been on this site for about two years, so have only just found your post. Did you find the tests you wanted? We've had to go to the USA for help as the tests in UK are unreliable. You may get tests here, but may also need a prescription for them from a doctor: lymeaiduk.com/index.php/get...

    Our trip to USA was very revealing and confirmed chronic Lyme Disease in my daughter, but also chronic Mycotoxin illness, and chronic HHV6 infections, all of them equally dangerous and UNTESTED in the UK. All of these inflammatory conditions can cause thyroid problems as well as as countless other symptoms. I'm happy to send more info if you still need it. Just send me a PM. Jane x

  • Hi Jane

    I've been away for a while too. Great to hear about your results in the U.S.!

    I couldn't find any reliable tests here but did find that T3 has restored my health. Not 100%, I'm not cured but as good as in the fact I can now live a pretty full life again and seem to improve over time!

  • Hi Denise

    I don't see a date on these chats!! how are you getting on with the symptons now?

    Pam

  • Hi

    Would you mind telling me where you went in the US for your tests please?

    Many thanks

    Pam

  • Hi Jane,

    Could you give me more info on the US tests you had done please?

    Many thanks

    Kerry

  • Hello Kerry, I'll send you a PM. Jane x

  • I'd be very interested in more info please

  • Hi janeb15, I'm new to this forum. I realise that your post was over two years ago now but I wondered if you would mind sending me any information regarding your trip to the USA, doctor info etc? I have Hypothyroidism and have recently been diagnosed with Chronic Fatigue Syndrome. I have various symptoms and the more I find out about Lyme Disease the more I feel that this could be the underlying cause. I have been doing a lot of research and can clearly see that NHS tests are unfortunately unreliable. I have seen different consultants in the UK but unfortunately they have all reached a bit of a dead end with me. After 17-18 years of various symptoms, I'll try anything to get better. Any information that you have with regards to Lyme Disease would be much appreciated. Thanks, Chloe :0)

  • Hi Chloe, I'm so sorry to hear this, but I do understand completely and empathise totally with your situation. I will PM you the information. I have LOTS!! It's way too much to reply here. Jane x

  • Thanks Jane. I would really appreciate it. I have done even more research and I can not believe how clever the bacteria is! It has the ability to 'hide' in the body and change shape, therefore going undetected on a lot of blood tests. I think that America are far more advanced in the types of tests they carry out. It also looks like clinicians abroad look at the symptoms of the patient more than the blood results alone. I have only just joined this forum and just confirmed my email address , so I think that you'll be able to pm me now. If I have to click on anything else please let me know, lol. I'm so new to this! Thanks again for your help. Chloe :0)

  • Yes, it can hide as a bacteria, biofilm or cyst. It can be accompanied by any number of co-infections (e.g.bartonella, babesia etc. etc.). It can also be accompanied by other chronic infections like mycotoxin illness, chronic viral infections, candida, MCAS and others, and so on and so on. Between them they can affect every organ and system in the body which is why the endocrine system is usually involved. Yet, doctors and resource groups in this country are SOOOOOOO far behind the USA and some European countries it's a disgrace. My feeling is that they see their little empires being threatened by informed patients instead of actually putting those patients first. I'm putting some information together for you which hopefully I'll be able to send later today. Jane x

  • Hi Jane, apologies for the delay in replying. I totally agree with you. It is quite depressing when you read about how little the NHS seem to know about Lyme. It has never been suggested by my gp, yet all of the signs are there and he can't get to the bottom of what is happening to my body. Thank you so much for your email. I'm just about to read it now. I need to move forward with this as soon as possible because each day is becoming more of a struggle. I'm determined to find the answer! Thanks again. Chloe xx

  • Hi there, I have also tested negative for Lyme with the NHS test. I was bitten by a tick on a visit to Prague and had the typical rash and all of the other symptoms but now some months later I am experiencing loss of hearing, confusion, memory loss along with extreme fatigue and many other symptoms. I am also bruising and cutting very easily too! I am so sure it is lyme however my go has said if I tested negative then I do not have it. I am starting to feel like I'm crazy. Could you please pass me on any info on reliable tests for Lyme disease you may have?

    Thank you. Christine

  • Hi Jane

    Really interested in your Usa testing, I'm also struggling think Lyme disease or another autoimmune - grateful for any info you have, three drs just shrugged and feel like I'm making it up but had a temperature, headaches, exhaustion and nausea for four months! Getting some joint ache now x thanks , Emma

  • Hi Emma, Having those symptoms can be a sign of a number of things including several autoimmune disorders, but sadly most doctors in the UK don't take them seriously enough. After a period of time they tend to throw those with such symptoms under the ME/CFS umbrella and show you to the door usually with a prescription for anti-depressants. However, that is not good enough. There has to be a reason for those symptoms. I'll pm you with some information that will hopefully give you more suggestions. Jane x

  • Hi Jane,

    I'm sorry I'm another one joining this thread - my little boy has recently been investigated for enlarged lymph nodes and one of those investigations (at my request) was a Lyme disease test. The result was apparently a "false positive" - as far as I understand it they haven't gone on to do the western blot so how they've come to this conclusion I've no idea. Are you able to PM me the info on the tests you had done for your daughter in America? I feel like I'm at a loose end and don't know where to turn.

    Natasha x

  • Natasha, I've sent you a PM. Jane x

  • Hi Jane

    I would really appreciate the USA information too if you could? Thank you!! Abi

  • I've sent you a PM. Jane x

  • Hi Jane

    My wife and I have been ill since late last year. My wife with suspected low level poly mialgia and myself with foggy neuro symptoms and severe fatigue. We were blood tested for Lymes through the NHS but the blood test came back negative.

    We were both badly bitten in central France late last year. And symptoms developed a couple of months later. I do not believe in coincidences and for us both to be unwell albeit different symptoms is crazy. We were both fit until this all started late last year. Both play golf. Walk every day. Previously run marathons etc Can you suggest anywhere we can go to to obtain an alternative test for Lymes or perhaps email the details of America or Germany. Any help would be appreciated plz 😀

    John546611

  • John, I'm so sorry to hear about the problems that you and your wife are having. Unfortunately the NHS Lyme Disease test is unreliable and the coincidences of your ilI health do seem to be striking. I will PM you some information. Jane x

  • Thank you Jayne. 👍

  • I do apologise, but would it be possible to pm me the details as well? I received a circular rash while walking last year, went down with a fever a couple of days later, and have had neurological problems such as dizziness ever since. My GP looked at me like I was a crackpot when I mentioned Lyme, and the private ELISA test I had was negative - but this is a year after onset of symptoms, so I am worried the antibodies just don't exist anymore.

  • I am so sorry to hear about your problems, and I will of course send you information. There is absolutely no excuse for GP's to dismiss the possibilities of Lyme Disease when they are presented with the symptoms you suggest. There is so much information and research out there now, and Lyme Disease is now being highlighted more and more by celebrities (most recently Matt Dawson this week) that they are being negligent in their care of patients. Jane x

  • Hello Jane,

    Anychance you could send me the info as well.

    Have no faith in the testing in the uk and I am also looking for alternatives.

    Many thanks

  • Hi, I need a bit of advice if you guys don't mind. Back in 2009 from what I can remember I felt different in my brain, like very detached from everything I see and if my brain functioning was different almost like I felt I was sedated or just came out of hospital. Headaches, difficulty concentrating, severe irritability, joint aches, eye dots and floaters, very fatigue and I just feel out of it to the point where I don't feel safe trying a driving test again. I've had a few blood tests done at GP which everything came back ok. Couple of years ago I was diagnosed with anxiety and depression. I just feel something else is wrong with me, and I do remember visiting the Lake District around the time my detachment and brain fog started. The doctors have ruled it out and I even feel embarrassed going back to ask for another test. Is there anywhere that specialises with this? I've emailed Lyme disease action and another one you mentioned above. Has there been any new changes here in UK to make it easier for testing and diagnosis? Thanks. Jessica

  • Hi Jessica

    I hope you've found some answers! If not it might be an idea to start a new post as I'm sure someone could help you. I didn't get anywhere with Lyme tests in the UK unfortunately. You should look at your thyroid function too, all these symptoms could be so many things. Explore every avenue, be determined and don't give up!

  • Hi,

    I'm aware your post was 2 years ago so i may not get a reply, but did you ever discover what this was? I have almost the exact same symptoms and more, but they are currently being passed off as "anxiety & depression", something which i have NEVER suffered from before, and even now i remain positive, but I have all sorts of crazy symptoms like nerve pain, ear pain, ear pressure, fatigue, sweating, general disequilibrium, and a whole host of cognitive and memory problems, moreso than your average "Oh i forgot <x> on the shopping list", I'm talking like forgetting peoples actual names, forgetting words and struggling to form sentences etc.

    I had the ELISA in the UK and it came back negative which i thought it would, as its been 3 years since i worked in New york State at a summer camp (which has the highest rate of lyme in the USA), but i heard that stress can trigger symptoms years after the event. I'm just trying to get to the bottom of it all.

  • Hi Lexyz22

    I have never found out what is wrong with me unfortunately but just control it with T3.

    I still have flare ups, an awful memory, exhaustion, pain and various other things. When I have women's hormonal issues(I have fibroids), it seems to bring back my other symptoms. I've given up trying to find out as on the T3 my life is mostly good and manageable. I do constantly worry that it will get worse again though, so for now, just living in the moment and appreciating the good times...

  • have you contacted lyme aid.com? i sent them an email and they were helpful

  • Hi Armin Clinic or Labs Germany--no reliable testing in the UK. They think Lyme disease is not a real thing, like it's a sham or like hysteria in the UK.

  • I decided to reveal my Lyme diagnosis to my GP surgery and, frankly, I wish I hadn't. A lovely GP was most interested and helpful, however the next time her attitude had completely changed.

    Firmly believe that she'd told the GP Partners who've clearly now instructed GPs to be obstructive as well as disinterested and not to refer me to any consultants. My health is of zero interest to them.

    Have spoken with my MP about this and the fact that I'm having to fund two health conditions which isn't sustainable due to being too poorly to work. Whilst MP is happy to speak with the surgery I was warned that from MP's previous experience this would result in even worse treatment.

  • Hi Jane, please could you kindly send me details also? I'm told I have Fibromyalgia, but having been bit by a tick approx. six years ago I'm convinced I have Lyme Disease. I'm looked at like I've gone mad when this is mentioned to any clinicians 😖

    Thanks.

  • Heya, I have m.e and fibro too. I got bitten 10 years ago I remember the tick and bullseye rash. Since then I've had bouts of flu and the rash come up in the same place. I've just come out of hospital from having the rash, fever, severe headache, nausea, tinitus, light sensitivity, room spin and cognitive difficulties. 3 docs suggested lyme and got tests done, the neurologist said it was migrane, since when does migrane cause all that and a rash?! He made me feel crazy :( I think if this comes back negative I'm going to go private to armin labs, whatever is causing this is destroying my life

  • Thanks for your reply .... What's Armin Labs?

  • Hi Jane..

    Sorry to be a further person to ask, but would you be able to PM me your information on testing? I've had a lymes test on the NHS that was negative and want to investigate further as I've run out of options with my GP.

    Many thanks

  • Hi Jane,, I'm sorry to add to your massive list of people asking for the USA information, but please can you pm me it too? I have severe all over fibro, diagnosed 3 years ago. I used to live in a bus with my dog in southern spain, who regularly had ticks that I'd remove daily. I occasionally found them in my armpits and groin. One day I thought I had had a reaction to a spider bite, as I lived and walked about the Campo with my dog. This lasted a week and was quite significant in its reaction. This was 20 years ago. Just before I got my fibro diagnosis I had been very ill with a flu virus which resulted in mild pneumonia. I remember the aching and flu symptoms the next day after swimming in my local pool. This aching never went away, and I've progressively got worse with so many other symptoms. I won't go into it all, but I've recently been made aware of Lyme's, and feel the need to investigate. I'm also in the UK, and have the same situation as many describe above. I'll be most appreciative if you could send me this information. 😊

  • Jane please can you PM me the info on where/which tests you and your daughter had for Lyme? I too am looking for a reliable private test. I have many symptoms that fit with lyme, and believe i may have been infected following a 20 unit blood transfusion as active lyme and co-infections have been found in donor blood yet are not screened for in the Uk. Many thanks.

  • Lyme disease testing information:

    lymediseaseuk.com/2015/11/2...

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