Hi ,
I have been online most of today looking at tests here in the UK and overseas trying to decide the right test to take to diagnose /rule out Lyme . I eventually decided the new DNA urine test by DNA connexions would be the easiest fastest and more accurate , it also tests for co infections.
Does anyone have any advice or thoughts on best testing in the UK or overseas ?
My GP Lyme test came out negative but I would like to make double sure as I have heard it is not reliable.
Lyme Disease Action says Country Pathology and the Doctors Laboratory are the most recommended.
Thank you, I will contact them.
Welcome to LWLD Community! 
I believe they do mention these Thyroiddown but as to recommending I am not sure this is the case and they also mention testing abroad too.
Lyme Disease Action say Private tests for Lyme disease are available through County Pathology, Medichecks and The Doctors Laboratory Some feedback indicates that Medichecks will only perform an immunoblot if the screening ELISA is positive. TDL and County Pathology will both do an immunoblot if specifically requested. The immunoblot will be carried out at the NHS Lyme disease reference laboratory which is a good thing as the result will be believed by UK doctors. Any request for a blood test through these UK laboratories, should specify “a C6 EIA for Lyme disease and Lyme disease confirmatory immunoblots” to ensure that both these tests are carried out.
There are some overseas laboratories sometimes recommended by on-line forums, but it is important to check whether these labs are accredited by their national systems. Some of them use tests which are not specific for Lyme disease or not licensed for diagnosis of Lyme disease and the results are unlikely to be believed by UK doctors.
Source lymediseaseaction.org.uk/ab...
Hope this helps
LWLD
Welcome to LWLD Community!
Lyme testing is difficult once the bacteria has been in the body long term as it evades detection due to it's exoskeleton protection (also it's neither negative or positive gram). I am in the same position as you Thyroiddown as my 1st Tier NHS test was negative and they currently won't do the 2nd despite my symptoms and they stick to my diagnosis of Fibro & ME which I may either also have or equally could be a misdiagnosis.
I have heard Armin Labs and DNA Connexions are good but again the NHS will likely not accept the results from labs outside the UK. The risk of getting a UK Private test is also that it could also show a false positive. I am currently trying to decide whether a PCR Urine in the UK might be better than abroad in regards to the NHS accepting it. Many in the Lyme Community do recommend that the standard of testing abroad is much higher but then the NHS won't accept or provide treatment based on these results. We are between a rock and a hard place.
Money isn't readily available to have them all and I want to make the right choice. PCR Urine UK might be my first thought as if positive the NHS might accept results.....but I am so undecided as testing abroad is so much more advanced.
Do other members have any experience with Lyme Testing and can maybe add to this post?
I look forward to your reply and what you think is the best way to get tested
All the best
LWLD
P.S. As a newbie, I noticed your post isn't locked to this community only - so here's a post with all the information you need if you wish to lock it;
healthunlocked.com/living-w...
Thank you for all this,
I thought maybe I should pay for a western blott at NHS labs first if my GP won't do it .
If this is negative again I would then select the best test I can find. I'm stalling as I research daily and wait on response from the Lyme Literate international medical community I have put the question forward to 6 such consultants.
I am also hoping to hear breaking news that a new test that is 100 percent accurate and accepted worldwide (before I again have to lay out more cash fast depleting) , but I suppose it would still take many more years for the NHS to recognize such a test so I hope I can make a decision in the next few weeks as to which test I will opt for if my NHS privately paid for western blott is negative.
Can you pay for Western Blot privately? I am assuming that your ELISA (1st Tier) was negative likely false negative? I think even privately certainly with the ones I've emailed (I'll check) the GP still has to cite clinical reasons and referral for the test to be done in private labs. Is your GP likely to complete a referral? I've read ELISA is 57% accurate and Western Blot 87% but cannot remember the source.
Otherwise, as I have been pondering its PCR Urine test (other person with Lyme told me you need to exercise before taking sample) in Stroud but yet to find out if this would be accepted by NHS.
Failing this I am considering abroad to get a diagnosis so I know what I'm dealing with and to show some people that I have indeed been suffering with Lyme Disease this whole time (misdiagnosed Fibro/ME). As above though it's piece of mind for us the patient the NHS will not accept or give treatment based on this test result.
It's so unfair and I've made petitions and signed petitions but we need to join together to use people power to bring about change. This is so hard when most of feel so unbelievably poorly and also when the Founder of Phones4U John Caudwell is ignored by the government, what hope do we have?! But we must keep fighting as this is a silent epidemic. Due to climate change tick numbers are increasing and Lyme Disease cases rising (3K to over 8K) and these are the ones who are diagnosed by the indequate NHS test!!!
Do keep me posted what you decide and as you I probably only have enough funds for 1 test, so it's hard to know what to do for the best
All the best
Emma
Hi,
Yes western blott is the test we need for late Lyme and the only one that we may succeed in getting a diagnosis on NHS . My GP has honestly had enough of me I don't blame him ,I don't know how he will take this but I will put it to him in the simplest shortest way I can only try . According to Lyme.uk , under testing , they say you do have access privately to two NHS labs. The Doctors Lab (NHS GP referral needed) and County pathology LTd (GP referral not needed they will provide the referral for 25 pounds plus the cost of the test ) It would be nice to save this money and have a NHS GP referral. Monday I have on my "to do list " to contact them and get any necessary documents although I do already have a RIPL P2 form printed out ready for my GP in case he will redo Elisa and western blott on the NHS account, I am uncertain if country pathology use the same forms or their own.
Lyme.uk tell you exactly how to convince your GP to redo BOTH tests what you need to tell him and the wording he should put on the form if you are sucessful in P2 bloods form to convince him .
If you think you may have neuro barreliosis (neuro Lyme) as I do there are different words to use on the P2 and history of disease is very important. You can find info on that also .
Having NHS agree we do in fact have Lyme is important to us all for future care..... Cash reserves may complete dry up as the disease progresses. But it is very limited what they can do for us and in fact much of what they would offer makes us sicker because it increases toxic overload .
Any treatments sought elsewhere, costs should be carefully considered and the simplest most economical ways to improve our shattered health should be sort by group effort. So let's search the UK and the world for Lyme recovery and healing data, preferably what is low cost and can be done in the comfort of our own homes.
I am going to list also research and list affordable Lyme recovery centres internationally , there are places in Thailand, Poland, Cape Town South Africa etc where if you do have some money you can visit and get excellent value for money.
But for the rest of us, we must focus on our own home care.
Hi,
I just checked county pathology who run the NHS test at the RIPL labs so the western blott costs NHS 101 pounds but I will need to pay 161 pounds . The PCR test you speak of is there too at 86 pounds. NHS pay 45 but is only recommended for early lime.
For Late neuro Lyme they recommend some other body fluid along with the bloods.
If you want a copy of the RPLI price list and guide, I could email it ?
