Is it Lyme or ME?
NB: Tick Talk Ireland has no ties with or recommend any particular option – we have listed alternative labs for information only. As always it is best to work with your own GP with any health concerns you may have.
There are many types of testing for Lyme.
1: The general Elisa test through your GP. Word of warning – this has a low sensitivity rate and can produce false negatives. Although I suggest this as a first line of testing I do recommend to people that a negative result may not necessarily mean you don’t have Lyme.
Per the guidelines from the test kit manufacturer Trinity Biotech they quote the following:
“The diagnosis of Lyme disease should be made based on history and symptoms (such as erythema migrans), and other laboratory data, in addition to the presence of antibodies to B. burgdorferi. Negative results (either first or second-tier) should not be used to exclude Lyme disease. High Complexity Test.
Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease.”
So, if Elisa is insensitive what other methods can you try? There are some labs. in the U.S. such as Igenex Labs who test for Lyme. I have listed below two labs. in Germany as the courier fees are much cheaper to send to Europe. These are private labs. and would need to be arranged separate to the GP. Details as follows:
2: Melisa LTT (this test is for antigens not antibodies and considered far more accurate, particularly with regards to an active ongoing infection). They have a UK office who will send a test kit out to you, plus an application form. You would need to arrange for the bloods to be drawn at your local GP office early in the week and arrange for fedex to courier them for you.
The London office will give you the fedex account number to use and details of how to arrange for fedex pickup. (To ensure your package is sent promptly, it may be worth dropping it directly at a fedex depot and write “Urgent – next day delivery” on it!) Melisa will then bill you for the test and courier fees and will give you results within 10 days. The website for more information is as follows:
MELISA Diagnostics Ltd
6 Heatherdene Mansions
Cambridge Road
Twickenham TW1 2HR
United Kingdom
Phone +44 20 8133 5166 begin_of_the_skype_highlighting +44 20 8133 5166 end_of_the_skype_highlighting
Fax +44 20 8711 5958
Email london@melisa.org
3: BCA labs – another lab. in Germany which does an amazing array of different tests regarding Lyme and its various co-infections. An important test to consider is the CD57 test which is a test developed to show immune suppression in chronic Lyme cases. For instance, results of over 100 (using the German Lab criteria) is considered a healthy immune system, results below this show immunity problems caused by Lyme and treatment should be continued until this normalises to prevent relapse. Low CD57 results are more indicative of chronic Lyme and would not be considered suitable for a more recent infection.
Details of their tests are as follows:
B-C-A Betriebs GmbH & Co. KG
Morellstraße 33 · 86159 Augsburg
Phone +49 (821) 455 471-0
Fax +49 (821) 455 471-5
Dr. med. Armin Schwarzbach speaks good English and is happy for folks to email him direct re:CD57 testing. The details are:
‘as@borreliosecentrum.de OR service@borrelisoecentrum.de (if not reachable).’
4: Lastly, some people opt to use Lyme literate doctors for their testing in the UK. You would have someone check you over, ask questions about your history and then suggest further testing for you.
One place to try is the Breakspear Hospital
Another ‘maybe’ is to see if you react to antibiotics. If your doctor is willing to try you on high dose doxycycline per Joseph Burrascano (recommended dose is 400mg – see guide below for more details) and you worsen this may be a sign of bacterial die off, which could show that your health problems are indicative of bacterial rather than the post viral problems often associated with ME.
There’s also a useful article called Is it Lyme or ME?
Burrascano’s guide on treating and diagnosing Lyme
Reasons for Lyme seronegativity
Some future developments – a 2 year project is underway to design a novel ‘lab on a chip’. For more details go to: http://www.hilysens.eu/index
Excellent and comprehensive article one which would have helped me several years ago at the start of my diagnosis of Lyme after sufferring ill health for 4 years.
Negative results (either first or second-tier) should not be used to exclude Lyme disease.
I was reading Trinity page on their site.
http://www.trinitybiotech.com/InfectiousDisease/Pages/InfectiousDiseaseProducts.aspx?ProductGroup=Infectious%20Disease&ProductType=Pathogen/Disease&Level1=Borrelia%20%28Europe%29
It states
TESTING ALGORITHM
A two tier diagnostic algorithm is recommended for the laboratory detection of specific antibodies against Borrelia. To obtain a high diagnostic efficiency screening is performed using a very sensitive enzyme immunoassay (EIA).
Specimens negative by EIA need not to be tested further,
all samples with a positive or equivocal result must be confirmed using a highly specific standardized Western Blot. If a patient with suspected early Borreliosis has a negative serology, serologic evidence of infection is best obtained by testing of paired acute- and convalescent phase serum samples.
If I am reading this correctly this is both misleading and confusing to physicians and patients alike.???
Please tell me what you think.
Hello Richard, I agree this can be very confusing. In the European section of Trinity Biotech they do not have copies of the Elisa test kits, however these can be found in the US section. Have posted links below..
http://www.trinitybiotech.com/InfectiousDisease/Pages/ProductDetails.aspx?ProductNumber=2346580&Filter=*2346580*
http://www.trinitybiotech.com/Product%20Documents/2346580-29%20EN.pdf
The test kit states “The diagnosis of Lyme disease must be made based on history, signs (such as erythema migrans), symptoms, and other laboratory data, in addition to the presence of antibodies to B. burgdorferi. *Negative results (either first- or second step) should not be used to exclude Lyme disease.*
Some reasons for the possible pitfalls with Elisa testing per the kit manufacturer’s notes include the following…
B. burgdorferi is antigenically complex with strains that vary considerably.
Early antibody responses often are to flagellin, which has cross-reactive components.
Patients in early stages of infection may not produce detectable levels of antibody.
Early antibiotic therapy after EM may diminish or abrogate good antibody response.
Thus, (in their own words) “serological tests for antibodies to B. burgdorferi are known to have low sensitivity and specificity, and because of such inaccuracy, these test cannot be relied upon for establishing a diagnosis of Lyme disease”.
Going back to the quote in the testing algorithm:
Specimens negative by EIA need not to be tested further (however due to the downfalls stated above a negative should NOT be used to rule out a diagnosis)
If a patient with suspected early Borreliosis has a negative serology, serologic evidence of infection is best obtained by testing of paired acute- and convalescent phase serum samples (this is for early Lyme tests I believe where the advise is often to re-test after a month of illness as follows)
In the analysis section they state:
0.90 Negative by Trinity Biotech B. burgdorferi IgG/IgM ELISA
No detectable antibody; result does not exclude B. burgdorferi
infection. An additional sample should be tested within 4-6
weeks if early infection suspected.
I hope that’s a help. Very best wishes, Jenny O’Dea
thank you Jenny.
“In the European section of Trinity Biotech they do not have copies of the Elisa test kits, ”
Surely they should as this is where the Euro Doctors and Patients are likly to look for answers.
Should I write to them? or just leave well alone.
Richard
Hi Richard, there would be no harm in writing to them, or at least asking that they put ‘negative result does not rule out a diagnosis’ as mentioned in the US side….