Testing for Lyme disease is highly problematic.
We need better testing which is universally accepted so that patients know where they stand. Current testing is flawed and and there is no test available to indicate when the infection has been eradicated.
Some private laboratories argue that their testing is superior to the testing offered by the NHS but often, these tests have not been independently evaluated or validated in a way which would enable them to be accepted by NHS doctors. Patients are therefore caught between a rock and a hard place, not knowing which test results to believe.
LDUK does not endorse any particular type of Lyme disease testing but instead strives to highlight all available, known options.
Four publications analyse independent studies of test accuracy. A short summary can be found here.
“In comparison to the methods used for HIV, Lyme disease testing can generate between 170 and 560 times as many false negative results.”
See the NICE Lyme disease guideline for more on their testing information.
If you have an EM rash, there is no need for testing and treatment should be started straight away. The initial testing method for Lyme disease offered by the NHS is an ELISA test which is usually performed at a local hospital laboratory and takes a few days or possibly a week to come back. The reliability of the two-tiered testing process used by the NHS appears to be questionable and it’s important to be aware that a negative result cannot rule out Lyme disease, especially as it can take up to 4-6 weeks after being infected for antibodies to show up in blood tests, if at all. There are some strains of Lyme disease not covered by current testing.
‘Laboratory tests for Lyme disease have significant limitations relating to the accuracy of the tests, the timing of tests, a lack of consistency in interpretation of test results and the expense and time associated with conducting tests’ (Brunton et al)
Many people in our Online Community report that they have been tested too early following a tick bite, meaning Lyme disease is dismissed as a possible diagnosis even before antibodies have had a chance to form. Immunosuppressed patients may never develop antibodies and neither may people who have had steroid treatment.
If the ELISA test is positive or equivocal, the blood sample is usually sent to the Rare and Imported Pathogens Laboratory (RIPL) at Porton Down in England or the NHS Highland National Lyme Borreliosis Testing Laboratory at Raigmore Hospital in Scotland. The next round of testing for Lyme disease is then carried out which involves a Western blot (sometimes called an Immunoblot) test.
Many doctors seem to be unaware that Lyme disease can behave differently to other conditions in terms of antibody responses. In many situations, an IgM response represents acute infection whereas IgG represents past infection but this is not necessarily the case with Lyme disease.
There is evidence that the IgM and IgG responses in Lyme are unusual and that, in particular, the responses may be slow and unpredictable, and that IgM antibodies may be produced throughout infection, even in late disease.
This paper states: 'Previous studies showed that the immune response to Borrelia burgdorferi appears to lack robust T-dependent B cell responses, as neither long-lived plasma cells nor memory B cells form for months after infection, and nonswitched IgM antibodies are produced continuously during this chronic disease.'
Instructions from the manufacturer of one of the test kits used by the NHS (the Viramed Borrelia Virastripe IgM test kit) state 'IgM antibodies usually appear 2-3 weeks after onset of the disease for the first time. Antibody titers often decline several weeks to months after convalescence. But they may also persist up to several years'.
You can request printouts of Lyme disease tests and it’s advisable to do so for your own records.
The NHS sometimes use a cerebrospinal fluid (CSF) test to look for antibodies. Samples are obtained by carrying out a lumbar puncture. An EIA is then used to confirm the presence of antibodies to Borrelia. It is possible for this test to produce a positive result for Lyme disease before blood tests turn positive but the evidence for the effectiveness of this test is poor and lumbar punctures come with their own risks.
In the UK, it is possible to pay for private Western Blot testing for Lyme disease using the same test kit as the NHS uses, without producing a positive ELISA result first. This may be useful if your GP cannot order a Western Blot directly for some reason. Both laboratories use the same testing facilities as the NHS located at RIPL, Porton Down and therefore the result should be accepted by NHS doctors.
There are private laboratories abroad which offer testing for Lyme disease that some Lyme disease doctors prefer to use. These laboratories also offer testing for a wide range of co-infections. These laboratories include ArminLabs in Germany and IGeneX and Immunosciences Lab and in the USA. There is also Innatoss laboratory in the Netherlands. It is important to remember that the NHS don’t tend to accept results from these independent laboratories due to the fact that many of the tests have not been independently evaluated and validated. LDUK does not endorse any private laboratory. As these test results aren't generally accepted by the NHS, this leaves many patients seeking private treatment for Lyme disease and associated conditions.
The charity LymeAid UK offer grants for ArminLabs and IGeneX testing.
In order to better understand some of the testing on offer, we reached out to some laboratories and submitted a list of questions. Responses to our questions will be published under the laboratory heading, if and when they come in.
If you are a representative from a laboratory and you wish to take part in a Q&A with us to help patients better understand the testing available, please email firstname.lastname@example.org and we can send you a copy of the questions submitted to other laboratories.
- R.E.D. Laboratories focus on developing and performing specialty research and diagnostic tests for several conditions, including Lyme disease. They currently offer Phelix Phage testing which you can learn about on their website.
- ArminLabs offer a range of tests including an immunoblot test (called a SeraSpot), an EliSpot as well as a PCR test. They also test for a variety of co-infections with both EliSpot and antibody testing. The laboratory itself has DAkkS accreditation. The co-infection tests are featured on the accreditation certificate but the EliSpot for Lyme disease is not. The Academy of Nutritional Medicine is the official UK representative for ArminLabs and all Lyme disease testing enquiries in this country should be submitted to this organisation. You can send your blood samples by courier and so you do not have to go to the laboratory in person. LDUK Q&A with ArminLabs (answered received 4th July 2019) can be read here.
- IGeneX offers a Western Blot test that includes more bands than the NHS test. They also provide antibody testing for co-infections and a PCR test.
- Immunosciences Lab offers a multi-peptide ELISA test for Lyme disease, Babesia, Bartonella and Ehrlichia. Also on offer is Immunoserology of Lyme disease by MPE and Western Blot. It is possible to order this test through the London Clinic of Nutrition by emailing email@example.com or calling 02033320030. If you can find someone to do your blood draw locally, you can send your sample in the post to the London Clinic of Nutrition and they will forward it on to Immunosciences Lab. If you are local to the clinic, they offer a phlebotomy service for £35.
- Innatoss Laboratories is based in the Netherlands and it is an accredited laboratory which offers CE approved testing. The following 5 tests are on offer for Lyme disease:
- ELISA IgG (Euroimmun)
- ELISA IgM (Euroimmun)
- C6 ELISA
- Western blot 1 (usually Euroimmun IgG/IgM/Mikrogen recomLine)
- Western blot 2 (usually Euroimmun IgG/IgM/Mikrogen recomLine)
The Western blot selected depends on the result of the ELISA test and Mikrogen is the same test kit manufacturer as the one used by the National Lyme Borreliosis Testing Laboratory (NLBTL) in Scotland. The difference is, Innatoss includes both the IgG and IgM test, whereas the NTBTL only uses the IgG test. Evidence and recommendations from the test kit manufacturers suggests that using both IgG and IgM in Western blot testing improves sensitivity.
LDUK Q&A with Innatoss (answers received 14th November 2017)
Read responses here.
Some alternative practitioners use bioresonance machines and other energetic techniques to test patients for infections and illnesses. This form of testing for Lyme disease is highly controversial and isn't scientifically validated but some practitioners and patients feel it may be useful. You can find alternative pracititoners here who may use energetic testing methods.
N.B. As things currently stand, tests cannot prove the absence of Lyme disease or when the bacteria has been eradicated following treatment. It’s always best to seek the advice of a medical practitioner with experience of Lyme disease as history, symptoms and signs need to be taken into account. At the moment, there is an over-reliance on blood test results which do not always reveal the full picture.
Like with serological testing, tick testing is not 100% reliable either but if you do wish to save a tick you have removed from your, a loved one or a pet for testing (either dead or alive) make sure it is well sealed in a plastic bag. Pyramid offer this PCR tick test kit, which is also available on Amazon. This test may help to determine whether the tick is infected with Lyme disease (it does not test for co-infections). Pyramid has provided some further information on their testing here.
If you have further questions on testing for Lyme disease, connect with fellow patients by joining our online community on Facebook and post your queries there or email us at firstname.lastname@example.org, but please be aware that we are not medical professionals.