More flexible guidelines for Lyme disease

Despite rising cases of Lyme disease in the UK, there are no UK guidelines on diagnosis and treatment and there is no research in the UK to discover the true incidence, despite widespread acknowledgement that most cases go unrecorded.

Heavy reliance has, until this new development (*see below), been placed on guidelines from the USA, which until now have held two conflicting positions: either short or longer treatment. The most widely accepted guideline has, until recently, been that of the Infectious Diseases Society of America (IDSA), which fails to acknowledge that repeat or longer courses of antibiotics can sometimes effect a cure. Applying this rigid approach in the UK has often driven patients to seek diagnosis and treatment overseas and has placed UK doctors in the difficult position of trying to reconcile conflicting information.

*Now, in a breakthrough move, the USA National Guidelines Clearinghouse has listed a different set of guidelines – recently revised by the International Lyme and Associated Diseases Society (ILADS). These guidelines, developed to an international standard and with patient consultation state that the existing evidence base from treatment trials does not justify a rigid approach. This will be welcome news both to patients and doctors, who have struggled to apply the previously-accepted IDSA guidelines to all cases. ILADS’ revised guidelines reinforce existing European guidelines covering the neurological complications of Lyme disease; they also, in a key new move, draw attention to the lack of an evidence base.

UK charity Lyme Disease Action ( has for many years argued against the use of strict guidelines.  Its rationale focuses on the large gaps in the evidence base, including key uncertainties which need considerable further research. These key uncertainties were verified and documented in a project with the National Institute of Health Research, funded by Lyme Disease Action.  Except in early Lyme disease, neither the best antibiotic to use, nor the optimum dose/optimum length of treatment, is known.  There have as yet been no human trials using combinations of antibiotics.

The previously-favoured IDSA guidelines themselves are currently under review.  Lyme Disease Action has submitted critical comment on the review process, which has significant flaws and which does not use the rigorous process adopted by NICE.

Says Stella Huyshe-Shires, Chair of UK charity Lyme Disease Action: “Now that ILADS guidelines are officially accepted in the USA it looks as if a more realistic and pragmatic approach to diagnosis and treatment will be possible in the UK. This will help improve patient safety and will allow UK doctors to provide compassionate care on a more patient-centred basis.”

Ends/29th September, 2015

 For more information, case studies or to speak to Stella Huyshe-Shires, Chair of Lyme Disease Action, please contact Sue Ockwell –

  1.  ILADS press release:
  2. Essential information on ticks and Lyme disease is available for the public and for doctors on the LDA website,, including links to Public Health England and NICE.
  3.  The Royal College of GPs has an online training module on Lyme disease which is free of charge to all health professionals.

Issued on behalf of Lyme Disease Action, a UK-registered charity striving for the prevention and treatment of Lyme disease and associated tick-borne diseases: