The letter that follows is what your MP is likely to have received when he/she wrote to the Minister on your behalf. We are asking everyone who is concerned about Lyme and who has received one of these letters to write again, regarding the answers as given below. Lyme Disease Action has given some guidance about this on the following pages of its website.
From the Minister of State
Caroline Flint MP
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS29th March 2007
Dear (MP),
Thank you for your letter of (date) to (Minister, i.e. Patricia Hewitt, Caroline Flint or Andy Burnham) enclosing correspondence from your constituent (name of constituent) of (address) about Lyme disease. I am replying as the Minister responsible for this policy area.
I would like to reassure (name of constituent) that clinicians in the UK have ready access to the best diagnostic tests available for Lyme disease. NHS diagnostic tests for Lyme disease conform to internationally agreed criteria and the tests are freely available. Though Lyme disease is not a notifiable disease, it is recognised as the most significant of our vector-borne diseases and is taken very seriously in the UK.
The internationally agreed criteria for diagnostic tests for Lyme disease ensure that correct diagnostic methods are used in each laboratory. These criteria are based upon stringent interpretation of serological tests for specific antibodies to Borrelia burgdorferi sensu lato and are accepted and applied by the NHS laboratories in the UK. These serological criteria are used by the Health Protection Agency’s (HPA) Lyme Borreliosis Specialist Diagnostic Service at the HPA’s south east regional laboratory, Southampton. Details of the testing criteria are given in the attached annex.
The HPA is working to increase awareness of Lyme disease and provides clinical advice to physicians who care for patients who may have Lyme disease. The Agency has nationwide links to experts in infectious diseases, neurology, rheumatology and other specialties who have a particular interest in Lyme disease, to whom patients can be referred. It takes part in national and international collaborations to improve diagnostic tests and to promote evidence based treatments.
The HPA has also raised awareness of Lyme disease through its website and through presentations to, and discussions with, professional and recreational and special interest groups. In addition, NHS Direct has published comprehensive information on the disease, including preventive measures, on its website.
Regrettably, there are a number of unorthodox tests that have been privately developed over the past few years and it is wrongly claimed that these tests can diagnose Lyme disease more accurately than conventional, internationally accepted laboratory criteria available on the NHS. The use of such tests for the diagnosis of Lyme disease can have serious implications for patients, both for those who genuinely have Lyme disease and require appropriate treatment, and for those who are led to believe that they have Lyme disease and go on to receive treatment that is inappropriate and may be potentially harmful.
The Chief Medical Officer remains concerned about the impact of unorthodox and unvalidated tests that can incorrectly give a diagnosis of Lyme disease and commissioned the Department’s Inspector of Microbiology to investigate the use of such unorthodox diagnostic methods in the UK. Examples of tests investigated by the Inspector of Microbiology are the fluorescent antibody test (Q-RIBb) test developed by the Bowen Institute in Florida and a fluorescent test and culture method developed by a Dr Mattman.
The Inspector of Microbiology concluded that the validation of the (Q-RIBb) test was not scientifically sound and had been shown to be invalid in peer-reviewed literature and the Mattman culture medium is discredited as it has been shown that this medium fails to grow B. burgdorferi, the causative organism of Lyme disease. Such tests should not be used for the diagnosis of Lyme disease.
The Bowen Institute was inspected by a team of Inspectors from the Florida Agency for Health Care Administration and the Centers for Disease Control and Prevention (CDC), Atlanta (Bacterial Zoonoses Branch, Division of Vector-Borne Infectious Diseases). The laboratory was denied licensure and is also not certified under the Clinical Laboratory Improvement Amendments. Such certification is required for all laboratories performing clinical laboratory testing. A warning was issued in CDC’s Morbidity and Mortality Weekly Report, 11 February 2005, advising caution regarding many commercially promoted tests for Lyme Borreliosis and restating the internationally accepted criteria for diagnosis. The CDC advises clinicians in the USA to use laboratory tests that are approved by the USA’s Food and Drug Administration or ones that have satisfactory performance characteristics. The Q-RIBb test does not meet these criteria.
I hope this reply is helpful.
Yours
Caroline Flint
Annex: Testing Criteria for Lyme disease (Borrelia burgdorferi)
Serum samples for the detection of antibodies to B. burgdorferi should be analysed by a two-test procedure:
a sensitive screening test (such as ELISA or IFA). All samples judged to be reactive or equivocal in the screening test should then be confirmed by:
a Western blot for antibodies to specific B. burgdorferi antigens.
The Western blot should be used only in succession with an ELISA or IFA test. Detailed interpretive criteria for Western blots differ between Europe and the USA, to take into account differences in the geographic distribution of the infecting genospecies.
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