This infectious disease is carried by ticks throughout the UK, including urban green space.  Despite awareness campaigns by Public Health England and others, awareness is low and UK studies report about 1 in 3 people with LB did not see a tick. The characteristic spreading, non-itchy rash and initial ‘flu like symptoms may be ignored if not troubling. Disseminated disease which follows approximately 2 weeks after the tick bite can affect almost any part of the body, though individual presentations vary. Other than the rash, symptoms are non-specific making diagnosis difficult.

The emerging nature of LB and the resulting lack of UK clinical expertise has placed reliance almost exclusively on the blood test which detects antibodies to the disease. The specific antibodies that tests assess do not always develop in some people for a range of reasons, so negative test results in cases of LB can occur. Early treatment can abrogate the developing immune response which fluctuates in the first months of infection. Serology is complicated by the heterogeneity of different species and strains and infections with some recently discovered species of Borrelia are not so well detected with current tests. Other infections carried by UK ticks can complicate both diagnosis and treatment. Antibodies (and therefore positive test results) can persist for months, sometimes years, in cured people and there is no test of either cure or persisting disease. To overcome the inherent limitations in the serology tests currently used, a number of companies are working to produce better diagnostic tests.

A House of Lords debate in October 2015 resulted in the Health Minister, Lord Prior, backing Peers’ call for the establishment of a network of interested NHS practitioners across the country with multidisciplinary experience. Lord Greaves, introducing the debate stressed that it is important to find out the scale of the problem. Currently there is no data on the number of people contracting the disease or the number of people continuing to suffer following initial treatment.

Early treatment with antibiotics within a few weeks of infection is almost always successful. However, the best treatment in late-diagnosed cases is unknown and some people do fail to recover following the initial course of antibiotics. Research has shown that the bacteria can survive initial courses of antibiotics. Persisting symptoms could in any one case be due to persisting disease, an auto immune reaction or damage to neuronal networks.

The Minister said “More research is needed to identify the basis of these persistent symptoms and define effective treatments.” It is hoped that current research by a number of companies will result in improved diagnostic tests to identify cause and therefore help indicate treatment.

Although there is some UK guidance for Primary Care in the form of Clinical Knowledge Summaries there is a lack of treatment evidence to support detailed guidelines for late-stage disease.  Using a rigorous process under the National Institute of Health Research a James Lind Alliance Priority Sharing Partnership documented 69 uncertainties in the diagnosis and treatment of Lyme disease.  The European Federation of Neurological Societies provides some guidelines but states that there have been no good quality trials on agent, dose or duration of treatment for European late diagnosed Lyme neuroborreliosis.

Repeat courses of antibiotics have been used successfully in the UK and it is this clinical experience which needs development to enable an improved service for patients. It is hoped that a regional service could foster expertise and experience. This would both support local doctors and also help develop an understanding of the inherent complexity of late Lyme borreliosis.

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The charitable aims of LDA are:

The relief of persons suffering from Lyme Disease, other Borrelioses and associated diseases in particular but not exclusively by:

  • Raising awareness of the public at large including conferences, information and support
  • Scientific and medical education and research in topics related to Lyme disease, other Borrelioses and associated diseases provided the useful results of such research are published.




Lyme Disease Action, Registered in England & Wales, Registered Charity Number 1100448, Registered Company Number 4839410