It is worth noting that there are major concerns about the reliability of some of the Lyme disease tests that are available in the commercial/private sector here in the UK as well as abroad.
So we have a situation where some people with genuine Lyme diseae are not being diagnosed and treated and at the same time there are people being diagnosed as having Lyme disease and treated with prolonged courses of antibiotics when they do not actually have Lyme Disease.
The MEA purple booklet has a section on Lyme disease testing and diagnosis.
Dr Charles Shepherd
Hon Medical Adviser, MEA
Information on Lyme disease and Lyme disease testing from MEA purple booklet:
Lyme disease
Doctors have been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place.
Infected ticks are more common in woodland, heathland and moorland in areas such as Exmoor, Lake District, New Forest, Yorkshire moors and Scottish Highlands.
The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans), which spreads out from the bite, usually after about 5-15 days.
Other early symptoms can include lymphadenopathy and a flu-like illness.
Laboratory evidence should always be sought if the diagnosis seems possible.
Diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neurological complications.
Analysis of cerebrospinal fluid from cases of early disseminated Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Angel et al 2012).
Misdiagnosis of Lyme disease:
There are also well documented concerns about over-diagnosis and inappropriate management of Lyme disease.
A retrospective case note study of 115 adults with suspected Lyme disease who were referred to a UK infectious diseases clinic found that only a minority had Lyme disease; one third had ME/CFS; and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.
Lyme disease diagnostic services
The Autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme Disease and consequent dangers of misdiagnosis. The full statement can be found on the MEA website:
www.meassociation.org.uk/ ?p=697
As of 1st June 2012, the Health Protection Agency’s Lyme diagnostic service is provided by the Rare and Imported Pathogens Laboratory (RIPL), HPA Porton Down.
Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitivity on CSF and antibody detection is the preferred first line test on CSF. PCR is not usually performed on blood as the duration of bacteraemia is short.
RIPL also has capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.
RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to Lyme.
RIPL@hpa.org.uk. There is no clinic at HPA Porton and they are unable to see patients or to give telephone advice directly to members of the public.
RIPL website:
www.hpa.org.uk/Topics/InfectiousDiseases/ InfectionsAZ/LymeDisease/
This gives details of where patients can be tested for Lyme disease on the NHS.
The ME Association has a patient information leaflet on Lyme disease written by Consultant Microbiologist Dr Darrel Ho-Yen.