Lyme Disease Action's Response To The Department Of Health.

Caroline Flint MP
Minister of State
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS

10^th May 2007

Dear Ms Flint

Thank you for your reply of 29^th March 2007.

Lyme Disease Action has many concerns with the answers as supplied in that letter and we should like to comment upon many of the points you raise.

This charity would find it helpful if, before we respond further to your letter of 29^th March, we clarify the patients whom we aim to represent. Our charitable objects ⁽¹⁾ require us to address the relief of persons suffering from Lyme disease, other borrelioses and associated diseases and our area of operation is the UK and Europe. It is patients of these diseases that in all instances we refer to.

Therefore, this charity aims to represent the interests of those patients who fulfil a diagnosis of Lyme disease or Lyme borreliosis by having an active infection caused by any of the pathogenic spirochaetes within the Borrelia burgdorferi sensu stricto/lato group of bacteria, occurring in the UK and Europe, whether known to science or not. We take this precautionary view because, as you will be aware, several new Borrelia genospecies have been assigned to this group of bacteria in relatively recent times, some of which have been associated with pathogenicity.^(2)(3)(4) Given that this is now a periodic occurrence, and given that the disease manifestations that may follow infection with these pathogens are broadly very similar and require similar treatment, we aim to represent all patients with this type of spirochaetal tick-borne disease. That these infections can take a major form in some patients, whilst others are not so badly affected, is widely recognised.⁽⁵⁾

We also seek to represent patients with any other associated co-infection since ticks are known to carry other pathogens. We advocate that these too should be looked for in patients showing a corresponding spectrum of symptoms. The scientific community cannot be certain that the full extent of the presence of tick-borne infection in the UK and Europe is known. In these circumstances we feel a patient should receive the benefit of the doubt.

If the Department views this patient group by any other definition than that in the above two paragraphs, we need to be informed of this to minimise any misunderstanding.

We aim to represent the interests of patients who fulfil the clinical picture as outlined above. In the current circumstances a fully-informed patient should be allowed to opt for a trial of treatment even if seronegative to known pathological UK Borrelia burgdorferi sensu stricto/sensu lato (Bb s.s./Bb s.l.) species. We would also like to see all other possible causes ruled out, including any condition that might have given rise to false positive serology, in order that a patient can receive the best possible diagnostic analysis.

At the end of our response, we have added an empirical viewpoint formed by patients from their actual experiences for your consideration and comment. We feel that direct clinical observation needs to be taken into account whilst we still have many gaps in our knowledge about tick-borne disease.

I shall continue to answer your response of 29^th March by following each of the issues raised by our ‘Ten Steps to better control of Lyme disease’ in the order that they occur.

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