Dated: 15th June 2007
Ref: PO00000210663
Ms Stephanie Woodcock
Chair
Lyme Disease Action
53 Kernick Road
Penryn
Cornwall
TR10 8NS
Dear Ms Woodcock
Thank you for your further letter of 10 May about Lyme disease.
I note that you disagree with the internationally accredited scientific and medical opinion on how best to diagnose Lyme disease correctly and the appropriate treatment for this condition. However, we do share a desire to ensure that those suffering from Lyme disease are properly recognised and treated.
Your stated belief that existing tests are not reliable enough to rule out the presence of Lyme infection does not help those who suffer from Lyme disease, nor those who are incorrectly led to believe they have Lyme disease through mis-diagnosis based upon invalid diagnostic methods performed in non-accredited laboratories. GPs are well aware of the correct, validated and accredited diagnostic tests for Lyme disease that are freely available within the NHS and which are the only reliable diagnostic tests for Lyme disease. I will repeat what has been stated in earlier correspondence, that diagnosis of Lyme disease is made based upon:
As Lyme borreliosis occurs only in people who have been bitten by an infected tick, it is important that a patient’s risk of exposure to ticks is properly assessed and the clinical history evaluated for features compatible with Lyme borreliosis before diagnostic tests are requested. In addition to the tests that look for the presence of antibodies to Borrelia burgdorferi, specific immunoblot (Western blot) tests are then performed on all specimens reacting in preliminary tests and the significance of the results carefully assessed in the light of the patient’s clinical and tick exposure history. 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. As you may be aware, different genospecies are known to have different health impacts. This two stage diagnostic test in support of the clinical picture enables the most accurate diagnosis to be made. Reliance upon the clinical picture alone may not be sufficient especially where the initial bite and resultant rash might have been missed by the patient.
Throughout your correspondence you make the assertion that the clinical picture is all that is required to confirm a diagnosis of Lyme disease, and on this point I fundamentally disagree with you. Particularly, when the list of presentations and symptoms that some websites, such as the International Lyme and Associated Diseases Society (ILADS) website, attribute to ‘chronic Lyme disease’ is so non-specific as to lead to misdiagnosis of Lyme disease in patients with many other conditions.
The treatment for early stage Lyme disease consists of a short course of antibiotics. Oral antibiotics such as doxycycline, amoxycillin or cefuroxime axetil for two to three weeks are recommended for erythema migrans, for three weeks to treat isolated facial palsy, and for four weeks when treating patients with Lyme arthritis. Turning to your question about the criteria for longer term use of antibiotics, although Lyme arthritis is not a common effect of Lyme disease it does justify the longer period of four weeks use of antibiotics.
Prudent use of antibiotics is essential for the wellbeing of patients. The inappropriate use of long courses of antibiotics for patients diagnosed as suffering from Lyme borreliosis by unorthodox and unvalidated tests when there is no objective or validated evidence of infection with Borrelia burgdorferi can have serious consequences for the health of such patients.
There is also the possibility that other diagnoses may be missed through reliance upon inappropriate long term antibiotic use. You say that certain patients have experienced some benefit from such long term use. One possible explanation is that some antibiotics (including doxycycline) have anti-inflammatory benefits as well as anti-microbial effects. Patients who have an inflammatory condition may respond to treatment with doxycycline, but this response is not related to infection, and their condition will worsen when treatment with antibiotics ceases.
I note that you have enclosed an ILADS paper with your letter. Diagnostic guidelines produced by ILADS reject the findings of validated tests performed in accredited laboratories and base their conclusions upon opinion and unsubstantiated hypothesis. The ILADS guidelines themselves have not been subjected to peer review and much of the information they contain in relation to Lyme borreliosis has been shown to be inaccurate. In addition, the Chief Medical Officer has serious concerns about the opinions put forward by ILADS and by some medical practitioners in the UK that Lyme borreliosis is a much underdiagnosed disease that is responsible for chronic fatigue syndrome (CSF/ME).* The way in which a minority of practitioners use a range of unorthodox and unvalidated tests to make a diagnosis of chronic Lyme disease, in patients whose accredited and validated laboratory test results are negative for evidence of Borrelia burgdorferi infection by established international criteria, is cause for alarm and has been the subject of a detailed investigation by the Department’s Inspector of Microbiology, Professor Brian Duerden. The report of his findings The use of unorthodox and unvalidated laboratory tests in the diagnosis of Lyme borreliosis and in relation to medically unexplained symptoms has been published on the Department’s website at: www.dh.gov.uk (type ‘lyme’ into the search bar and follow the links).
You ask whether the Health Protection Agency (HPA) provided clinical advice and expertise to physicians. I can assure you that the HPA does advise clinicians directly in relation to both diagnosis and treatment of Lyme disease. The HPA also has a national network of wider expertise that it can draw on when advising clinicians on patient care. This is a routine function of the HPA and the Lyme disease reference laboratory is frequently consulted by clinicians about patients for whom a diagnosis of Lyme disease is being considered. Such advice is a confidential matter as it relates specifically to individual patients.
With regard to the reporting of Lyme disease and estimates of disease in the UK, laboratory confirmed reports of Lyme borreliosis have risen steadily since reporting began in 1986. Several factors have contributed to the increase, including greater awareness of the disease, greater access to diagnostic facilities, more sensitive diagnostic methods and the introduction of the enhanced surveillance scheme in late 1996. Over 3,000 reports have been received since 1986, almost 2,800 of which have been completed since the introduction of enhanced surveillance in 1997. Mean annual incidence rates for laboratory confirmed cases have risen from 0.06 per 100,000 total population for the period 1986 to 1992, to 0.64 cases per 100,000 total population in 2002, to 1.1 cases per 100,000 total population in 2005.
It is accepted that there is under reporting of Lyme disease, as a clear diagnosis is sometimes possible and appropriate antibiotic treatment given, without the need for laboratory confirmation when clinical symptoms are obvious and the history of recent tick bite proven. Such cases, and those where infection is asymptomatic or results in only mild symptoms that do not require medical attention, are not included within the national figures. Making Lyme disease a ‘notifiable disease’ would not solve this problem of under reporting. Comparisons of incidence of disease in other European countries does not help to estimate possible incidence in the UK, as the distributions of tick and the differences in the species of ticks and the genotypes of Borrelia burgdorferi vary so greatly between countries. The prevalence of the tick Ixodes ricinus is known to be greatest in Scotland. The presence of this tick is an indicator of the presence of other ticks and thus of the greater potential for Borrelia burgdorferi to be present than elsewhere in England and Wales.
The Department of Health has given very serious consideration to the issue of Lyme disease, particularly to the issue of diagnosis of Lyme disease. I am satisfied that the NHS has adequate diagnostic capability for Lyme disease, and I wholly reject the suggestion that a broad, non-specific set of clinical symptoms should be relied upon for the diagnosis of infections with Borrelia burgdorferi.
I hope this reply is helpful.
Yours sincerely
Caroline Flint
Lyme Disease Action, Registered Charity Number 1100448, Registered Company Number 4839410
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