Hugo Swire MP asks about Lyme disease

On 9th January 2008, Health minister, Dawn Primarolo supplied replies to two Parliamentary questions put by Hugo Swire MP for East Devon. Click on the blue links below to view the two questions. LDA’s responses to these latest Parliamentary questions can be read below.“

Question One

Read Parliamentary Question One and Government reply on they work for you website (relating to Department of Health’s estimates of undiagnosed Lyme disease.)

Lyme Disease Action comments:

Whilst it is true that those with undiagnosed Lyme disease with mild symptoms are not identifiable if they do not consult a GP, this charity considers it important that patients and GPs are aware of the dangers. Having been contacted by many people with later stages of Lyme disease who were
not diagnosed when they had initial symptoms, it is apparent that a significant percentage of patients have had a slow development of the illness, taking place over a period of months or years. Others have clear memories of tick bite, initial symptoms and apparent recovery, only to develop further
symptoms over a period often measured in years. Our experience suggests it is not an insignificant problem. It can be characteristic of the biology of spirochaetal disease that some cases follow an unclear and indolent course in this manner and it can be argued that GPs need more information about
presentations like this. If patients do not refer to GPs with early problems they do not receive vital early treatment, which might prevent the disease developing, so public education is also important.

The Department of Health maintains that those with active disease who consult a GP will be diagnosed. This is a misplaced faith in GP infallibility, as Lyme Disease Action knows of cases where diagnosis has not been made. It is not acceptable that DH is not proposing to take steps to
identify undiagnosed cases. Given the fact that, caught early, Lyme disease is an eminently treatable illness, every effort should be made to identify, warn and, since we are here talking about active cases, treat such people.

Large numbers of people do not know about Lyme disease and are not aware that they should be alert to any symptoms and signs that they may develop. Lyme Disease Action is aware that not every infection develops into active disease, but the potential for it to do so remains a possibility for
the patient as explained above. Lyme Disease Action is also aware that since many Lyme symptoms are non-specific that the problem is not an easy one. That something is problematic does not mean it is unimportant.

Ms Primarolo reports that there is guidance about Lyme disease published on the HPA website, and that various other awareness raising measures have been taken. Lyme Disease Action makes the point that these measures appear to have failed so far and lack of knowledge is still widespread, both
amongst medical professionals and amongst the public at large.

Lyme borreliosis is a relatively newly recognised infectious disease, potentially very treatable if caught early, that would appear to be on the increase in the UK. Lyme Disease Action feels that the actions taken by the Department so far are totally inadequate to deal with the problem. This
is in spite of the fact that all parties agree that early diagnosis, including early clinical recognition, and prompt appropriate treatment, represent the best hope the patient has of making a full recovery. Lyme Disease Action advocates that much more needs to be done to educate both medical
professionals and the public at large.

Question Two

Click to read Parliamentary Question Two and Government reply on they work for you website (relating to blood testing.)

Lyme Disease Action comments:

The first answer given by Dawn Primarolo to Mr Swire implies that all symptomatic cases are recognised and diagnosed by their doctors (and presumably therefore will be suitably treated) and that all other cases are either asymptomatic or mild and self-limiting. Untutored observers therefore
might feel reassured that late-stage Lyme cases would be prevented. The ensuing answer to the question indicates that nevertheless late cases are present in the UK. Lyme Disease Action feels it is important to understand why this occurs and whether it is preventable, since all parties agree that
late stages of the illness are harder to treat.

Ms Primarolo states ‘The significance of the results are then carefully assessed in the light of the patient’s clinical signs and exposure history to ticks.’ This process introduces a subjective element of judgement to the final decision as to whether or not a patient has Lyme
disease. In assessing the available information in this manner it can happen that the laboratory reports are considered not in relation to the clinical assessment, as Ms Primarolo asserts, but are taken to over-ride the clinical assessment. Introducing this element of subjectivity may be unsafe,
especially in the light of the body of peer-reviewed literature that casts doubt on upon the reliability of current laboratory tests.

We note the Inspector of Microbiology’s Report, and his commentary on unvalidated and unorthodox laboratory testing methods for Lyme, but in any case Lyme Disease Action does not advocate that unvalidated tests be used in diagnosis, so we concur with the Chief Inspector of Microbiology
on these aspects. Furthermore, we note that whilst the Chief Inspector of Microbiology describes the current situation with regard to Lyme testing in the UK, the comments in his 2006 Report (q.v.) are confined to descriptive ones, where one might have expected to see endorsement.

Lyme Disease Action feels that DH needs to reconsider all the information put before them in the Lyme disease debate, including patient report. It is vital that patients know that the process of Lyme diagnosis is safe and secure and if it is not, then medical judgement should err on the side
of caution and, with informed consent, treat the patient when there is any doubt. At the moment, doubts still exist and Ms Primarolo’s answer gives no indication of when or how these will be addressed.

With reference to other diagnostic tools under consideration, newer diagnostic methods are mentioned but as Ms Primarolo remarks they are not useful at present for routine diagnosis. Lyme Disease Action advocates that there is still much work to be done to develop new and more reliable
diagnostic methods as a priority. Such measures will advance the field and enhance the degree of reliance that can be placed upon laboratory testing.

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