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
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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.
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.
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
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
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
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
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 Jane. I have been told I have ME and fibromyalgia but my mum is not convinced. Would you please be able to send me the details of the tests and where you went. I find I'm the U.K. They just send you away with pain killers and no real answer
Paula, Three cheers for your mum! ME and fibromyalgia seem to be the go-to diagnoses when doctors can't be bothered to find the real cause(s) behind your ill health. It's just not good enough. I'll send you a PM with lots of details and hopefully you can find some information to help you find a way forward. Jane x
This is all sounding very familiar. current dianosis is inflammatory arthritis, but they dont REALLY know what is up..now having heart issues. I just want to get checked, and im worried that others in my family may have it now too.
Jayne - I would be SO grateful if you can find the time to send me the info you have on the condition/testing please?
There are many confusing symptoms associated with Lyme Disease. We were confused by my daughter's thyroid issues and it turned out that she had Lyme Disease once she received the correct diagnosis, and she is now gradually reducing her thyroid replacement. Arthritis and heart issues can also be wrongly diagnosed when in fact the problem is Lyme Disease. The Lyme bacteria attacks all areas of the body. I will send you a P M.
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
Don’t be fooled the NHS knows exactly everything about Lymes there is this big pretend lack of knowledge but there was a confreres held in 2013 that put the cards in the tablets, someone called Steere was in charge of testing for lymes when the results it has been recently proven tho tests were doctored until the results showed negative and this tests were unto only allow. A very small percentage of sufferers, working for a pharmaceutical company that sold a drug that cures lymes by not actually curing it but makes you suffer aids symptoms, creates a negative antibodie presence that says your don’t have lymes when you do but you have theses illnesses as well, charging to treat you for life with something you don’t actually have, look up crimes disease, and what they don’t want you to know about lymes. There is one rest that works a PCR tissue test for Lymes, there are two forms one denied is it is connected to fungal infections like almost all deadly illnesses they say arnt and are not curable, not with drugs but herbal that is illegal to prescribe as a treatment, drug companies again, . Back to test you receive a deep massage over your body and lymes spirit keets ( not correct spelling but that’s how it’s pronounced) that are present in your tissue ( denied by so called health professionals hiding the epidemic) are released into your urine and a PCR test shows up. Not concifered or acknowledged by NHS . Trying to find private testing in U.K. 🤞, you fighting a system trying to hide a disease they cannot afford to acknowledge good luck
I'm also suffering from chronic illness and this includes as strange unexplained skin rash so I am also looking for Info on reliable tests as in Scotland everything comes down to cost so don't have much hope of the doctors trying to get to the bottom of my illness. Recently diagnosed with functional neurological disorder but I'm not convinced.
Hi I've had strange sensations, muscle twitches all over & internal vibrating for the last 2 months. Drs have know idea what it can be & just say it's functional neurological disorder based on my diagnosis 4 years ago for burning pain in legs. I don't buy this either. I have so many ideas , Lyme is just one - wish I could get a test. To either rule it out or look for treatment. I feeling like I'm either dying or going crazy 😞 No sleep really suffering.
Hello 4871sam, you are not crazy. One of the first symptoms I had was this strange internal vibrating - a bit like when you have had too much coffee and your nervous system is disrupted. I would wake up at night and feel like I was having a heart attack. I could feel the fluids in my neck/brain moving, squeezing through the veins - like it was blocked. I would lie awake feeling terror and felt so alone in my suffering. I was so exhausted from nights of no sleep - I truly feel your pain. Finally, I was diagnosed with Lyme disease, Babesia and Bartonella after a desperate 2-year search. The lyme spirochete attacks our brain & nervous system and it is highly likely this vibrating is caused by the Lyme infection. I was lucky to get a positive lab result from the NHS but chose to have further testing at Igenex Labs (in CA, USA) because I wanted to know what other co-infections I had. This is a horrible journey to be on, but keep the faith that you will have better days ahead. Remember that certain foods can increase the symptoms (gluten/sugars/alcohol & stress) Armin labs in Germany are the closest (more accurate testing) to the UK. If you contact them, they will send you the blood vials/package. I think it is around 300 for a Lyme test. I hope you are having some better days by now? 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?
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
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.
Hello Ailsaw, My apologies for the delayed response. I am currently at my daughter's house in Italy where we have been without the internet for over a week, and it's still very flaky! I'll PM you a response asap. Jane x
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 😀
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
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. I am also having joint pain for years but latly having memory loss , confusion , vision and hearing loss. Can u also pm some information where I can take a real test . Thank u so much.
I'm so sorry about my delayed response. I am currently at my daughter's house in Italy where the internet has a mind of its own and I'm a bit out of kilter with emails etc.
Sadly there are no reliable NHS tests, but things have improved over the last few years re. private testing. Lyme Disease UK is the best place to go to check for all things Lyme related including tests - lymediseaseuk.com/lyme-dise...
I know the lady who set up Lyme Disease UK very well. She is a fantastic person and has done an incredible amount for Lyme patients despite having the condition herself. x
Hi John546611 - I hope you & your wife are having better days with your health? I am so sorry. I wanted to suggest ARMIN LABS in Germany as the closest (more accurate) option for Lyme disease testing to the UK. I think the test is in the 300.00 range. Co-infections such as Babesia, Bartonella, Mycoplasma (and more) are important to test for as they can play havoc in the body. All the best to you x
Hi Jane, I am new to the site and trying to get tests to confirm Lyme for my Husband. He has all the symptoms and EM rash but was not taken seriously by the doctor as he had not been abroad, was tested positive for B.burgdorferi IgG/Igm (C6 EIA) but negative on other other tests. (test was done 7 weeks after seeing GP while he was also taking antibiotics and steroid tablets for unknown illness). He has had a biopsy done on the EM tissue which consultant said was consistent with Lyme but as bloods were inconclusive, they are looking at other causes. Really frustrating. You said you had tests done in USA, did you physically have to be there? as my Husband has a fear of flying. Any info you could provide would be greatly appreciated.
Hi Denise, I'm so sorry to hear about this, and sadly it's an all too familar tale. You can have tests done by companies in Germany and USA. I will send you information by PM about the tests and many, many more links. Jane x x
Hi Jane, would it be possible for you to send me the information too please? I was bitten 18 months ago in Scotland and ALL of my symptoms are fitting of Lyme however as I have had a negative ELISA no doctors are interested in any further tests. I had typical herxing symptoms after taking antibiotics for a chest infection so came off after 2 days and from what I've read this may have an effect on testing. I'm pulling my hair out trying to work out where to go from here! Would really appreciate any of your knowledge x
Hello katiecollier, I'm happy to do so. I'm so sorry to hear that you had the all too frequent response from your doctors here. Sadly there are NO doctors in the UK who are Lyme literate, and the Lyme test here is woefully inadequate. Doctors in the UK are not aware either that being infected with Lyme disease and its associated infections can seriously affect thyroid function. I'll PM you with some information. Meanwhile you may be interested in checking out this site which was created by someone who was told she had a thyroid disorder, but she dug deeper and discoverd that it was much more than that. lymediseaseuk.com/ Jane x
Hi janeb15, I am in a similar situation to other posters on here. I have been very ill for nearly 3 years and have been diagnosed with ME CFS but have recently stumbled across info on Lyme disease which seems to be a lot more plausible as my symptoms are identical, I used to work outside all over the UK in woods & fields and I remember having the bullseye rash. I have had the NHS test which came back negative but strongly feel I may have Lyme. If you could email me the info that would be great! Thanks.
Hi, I am so sorry that you have been given the usual response about Lyme. It's simply not good enough. I will send you a private message, but also check this site. lymediseaseuk.com/
It's my pleasure. I found that going through so much new information was a HUGE learning curve, and it still is as more and more information comes to light. I hope that it will bring you some help. It has given my daughter her life back - in fact it literally saved her life. Good luck. Jane x
I have just been told I have CFS but I don't think its that and think it's lyme disease as I have more of the symptoms of this and I did get a bad bite but it was over a year ago now but I have read that it can sometime stay dormant in you body. I have been ill for 5 month now and they have ram lots of different blood tests and they have all come back negative they say there is no point in doing a lyme disease test as they come back negative most of the time. I have more symptoms of lyme that CFS. Can you please message me with the information about where you got tested I would really appreciate it. Thanks 😊
Hello, I'm sorry that you are yet another person who has been diagnosed with CFS. This seems to be the go-to diagnosis by GP's when they can't be bothered to look any further. It was the same for my daughter. You are right about the Lyme bacteria lying dormant. It can do so for 10, 20, 30 years and hides in different forms - the straightforward bacteria, in a biofilm or as a cyst. It loves connective tissue, scar tissue, muscles, and thrives there ebbing and flowing, and undetected, manifesting itself in all sorts of symptoms that confuse doctors. I will send you some information by PM. Jane x
Hi Jane, I would also be super grateful if you could send me your USA advice and experiences! I have been diagnosed with M.E here in the UK with a definite viral onset so would love to investigate further. Docs useless here. Sorry about your daughter but glad you found answers. Many thanks, Amber x
Hi, No, not sick of it at all. I must admit to being rather overwhelmed with the requests I've had, but that's an indication of the huge gap that there is in information dissemination when it comes to chronic infections. It's a national scandal. I will gladly send you what I have. Jane x
Could I also ask for the information you have? I have no faith in the NHS and need to look elsewhere for a proper diagnosis for my little boy. Many thanks,
Hello Laura, I'm so sorry to hear about your little boy. I am currently updating the information that I have to send out to enquiries like yours, as new research is published all the time. I will send my information to you as soon as possible, but in the meantime perhaps you might be interested in something I posted the other day.
I feel so sick to my stomach at all I'm reading. I have all the clinical symptoms of neuro lymes (numbness, tingling, pins & needles, pains in arms & legs, now I'm getting severe headaches) but the ELISA test was negative. I initially thought it was my underactive thyroid but the symptoms were getting severe as the days & weeks went by. I managed to get put on doxycycline & my symptoms became less intense. but after 4 days I had what I now know to be the herx but back then I didn't know what it was so I just stopped taking it. Then I had a lumbar puncture the next day and the test came back negative (I think the doxycycline must have inhibited the antibody levels). But my symptoms got sugnifucantly worse. I've seen 4 GPs & they don't have any idea but want to give me strong pain relief & antidepressants. I saw a neurologist privately who thought it could be lymes until he saw the negative blood & CSF ELISA. I got v v bad to the point I was wanting to end things (I'm not depressive or a dramatic person but I couldn't bear the symptoms any longer). My GP told me to go to A&E. after about 5 hours I was seen by a doctor who seemed to believe me. He agreed to put me on IV ceftriaxone but only until the private neurologist could make a call on whether I could continue or not. The neuro said he could not justify IV antibiotics so He referred me to an infectious disease neurologist who told me I didn't have lymes & that I will either just get better or develop chronic fatigue. He also said lymes patients do not get the Herx. He also said labs in Germany and US are just commercial & no one ever comes back negative. Implying they are not to be trusted & to trust the UK labs.
It's 10 days since I had the brief course of IV antibiotics and my headaches are excruciating and other symptoms like arm pain are coming back.
Do you have information on where I can get treatment. I know it's lymes.
I'm going to get tested at Armin and am hoping the recent antibiotics won't mask the result. I don't know if the GP will believe foreign results.
Thank you so much for helping me (& all the other people you have helped).
Firstly let me say that I am so, so sorry to hear of your battle. I wish I could say that your situation is rare, but sadly it isn't. I assume that you came to this forum because you had suspicions that you have a thyroid problem. 14 years ago I joined Thyroid UK because my daughter was ill and we thought she had a thyroid problem. My husband had already died because we thought he had a thyroid problem. Both had diagnoses of hypothyroidism from private doctors recommended by Thyroid UK.
What we later discovered was that whilst hypothyroidism can sometimes be alleviated by thyroid, adrenal and other supplements, in many cases like my daughter's it turns out that thyroid dysfunction is merely one symptom of a much bigger problem. Like you we were treated with scepticism, disbelief and in many cases downright rudeness by those to whom we went for help. We wasted thousands of pounds which I could ill afford on recommended private tests and doctors.
Lyme Disease, its co-infections and other related chronic infections can cause thyroid disorders as well as affecting every other cell in the body. Lyme can change its form and hide in the body where the blood test used in the UK cannot find it.
Saddest of all is that there is not a single specialist in the UK, let alone any GP, who has the slightest idea how to properly test or treat Lyme Disease.
We were forced to find help elsewhere like so many others from the UK. Some have gone to the USA and some to Germany. Some have gone to specialists in both countries. The fact is that Lyme Disease and everything associated with it is an extremely difficult and complex disease to treat and it requires experts to help who do not exist in the UK. This need not be the case if the disease is caught early enough, but that usually does not happen.
Five years ago, after our first visit to the USA when my daughter was diagnosed, I contacted doctors, the PHE and Thyroid UK with the information I had discovered. Earlier this year NICE came out with some woefully inadequte Lyme Disease guidelines, confirming that sadly there is massive resistance in this country in acknowledging the devastation that these chronic infections can cause. They can hide and masquerade as other illnesses, and meanwhile the sufferers receive NO HELP and continue to be ridiculed and misdiagnosed by those who should be helping. Shame on all those people who are letting down so many sufferers.
One thing became crystal clear to us in all of this tragic course of events. As individuals the responsibility for our own health comes back to us, and you have clearly realised this too.
My daughter is now on the long road to recovery, but no thanks to those to whom we went for help in the UK. The start of her recovery was delayed by years of inaction from those who should have helped. It is no word of a lie to say that she too would now be dead had I not intervened and taken her to the USA. She was EXTREMELY ill by the time I managed to drag her to the USA - her doctor there saved her life.
I cannot promise you a miracle cure, but I will gladly share with you any information I can about Lyme Disease and related chronic infections, and there is much more out there now that there was 5 years ago. I will send you a PM. Jane x
Hi Jane, thanks for sharing your story. I would be very grateful if you could share the information you have gathered whilst finding treatment for your daughter.
Hi jane can you send me details for where u went in usa Please... as i feel like im bashing my head against a brick wall here... my Daughter got bit 2013... bulls eye rash.. 2 negative lymes test.. still on going symptoms but doctors won't treat her.. spent 14 weeks off school and has numerous absenses from school! she has joint and muscle pain, numbness, tingling, face swelling, she is now melatonin def, vitamin d def, enlarged spleen, degenerative changes in her spine... has to now sleep sitting up... on painkillers co-codimal but literally falls asleep by crying herself to sleep... why should a 13 year old be left like this when she had the rash and flu like symptoms from day 1!! But coz tests 2 tests were negative doctors say she definitely hasn't got lymes... her doctor has said nothing they can do... why should she suffer like this?? Shes like an old lady in a teenage body.... i done dr horowitz quiz and took it to her docs to be told dont mean nothing... she scored 86 and it stated on there anything over 43 to see a specialist...... please help me... it's so upsetting seeing my daughter fade away before my eyes when you know it was caused by a bite!!
Hello, I'm so sorry that you've had such difficulty in obtaining help for your daughter. I do understand and empathise with your problem. It's shocking that the UK is lagging behind other countries in the area of chronic illness. I will gladly send you the information I have. I hope that you find it useful. Jane x
Have just read through all the posts here and think you're amazing helping all these people. Well done you!
I too have been struggling for 4 years which has been diagnosed as CFS although I have been insistent with GP that I have Lymes after living in the North East of the USA for five years.
I would be really grateful of any information you have.
Hi Jane Please could you send me the info you have on US and European testing for Lyme Disease. After several years of symptoms, deteriorating health and no help whatsoever from UK medics I am anxious to get a diagnosis and treatment. Thank you so much. Rowena
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
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!
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.
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...
Hi Jessica, I also have similar symptoms to yours and have been diagnosed with dissociative seizures and Fnd but not completely convinced as I had an unexplained skin rash five years ago
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 😖
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
Oh poor you.. I really sympathise. I hope you had the chance to be tested and are on the way to your recovery. I went through something very similar - a haughty GP at the hospital told me I need to have my eyes tested and to control my stress!! I walked out of the hospital in tears... it is so awful to feel this way and have no-one believe or express a true desire to get to the bottom of your illness.
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.
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.
I'm new to this forum which I found by chance whilst researching my daughters symptoms. 2 years ago she was admitted to Infectious diseases after 3 months with continuous high temperatures, fatigue, sore joints, usually a finger or ankle.
After a week there and with all blood tests, scans, (pet, MRI, cardiograms, ultrasounds) etc negative we were sent away with no answers. Since then, she has had several bouts of the same, usually lasting a few weeks, (we're in week 3 now). She has little energy at the best of times outwith these bouts. I feel there is no point in going back to the GP but we can't go on treating daily with paracetemol and iboprofen.
Although Lymes was tested for at the time, as well as Thyroid etc, all came back negative. I think she needs the Lyme disease test but like everyone here, have heard it is not reliable at all. You sound well informed and I hoped you could send me some information on the US testing and any other info you might have access to?
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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
Where Can I get the TSI test from please
Where can I get Novothyral ?
Where can I get T3?
Does anyone know of a good private endo in Cheshire?m
