English Language Guidelines on Lyme disease

None of the guidelines incorporates all the published knowledge on Lyme disease and because of the lack of quality European clinical trials, there is significant disagreement on both diagnosis and treatment. All these references should be read in this context.

UK Guidelines

There are no specific UK guidelines, although a NICE Guideline is in development, with an anticipated publication date of April 2018. The following are currently available:

The Map of Medicine. This is a central repository of evidence-based care pathways. Healthcare organisations purchase access to the pathways they feel useful and relevant to them.

Points to note:

  • Balanced summary of clinical features, diagnosis and management

NICE Clinical Knowledge Summaries CKS for Primary Care

Points to note

  • Only includes treatment recommendations for erythema migrans: if neurological, cardiac or joint involvement is suspected, immediate referral for specialist advice is recommended.
  • For people with erythema migrans and possible tick exposure, states that laboratory confirmation of infection is not necessary.
  • Provides information on the Jarisch-Herxheimer reaction that may occur.

The British Infection Association (BIA) published a position statement on Lyme disease in their own journal in 2011.

Points to note:

  • NB Some treatment recommendations are misquoted and incorrect; these pose a risk to patients.
  • This is not a set of guidelines and has therefore not been drawn up using NHS Evidence accreditation procedures for guidelines.
  • The full BIA position paper can be read on the BIA’s website (click the Organism tab) where it is presented as if it is a properly developed guidelines; very misleading for doctors.
  • The statement appears to be a presentation of evidence to support an already confirmed view, rather than a discussion of the present state of knowledge concerning Lyme disease.
  • Lyme Disease Action has some serious concerns about this position statement and has issued a detailed comment paper.

Public Health England has some pages on the DH.GOV webpages

Points to note:

  • Suggested Referral Pathway provides a concise summary including some limitations on serology and the possibility of relapse.
  • Antibiotic recommendations are given.
  • Brief description of UK diagnostic tests available and link to the specialist PHE laboratory User Manual.

European Guidelines

ECDC (European Centre for Disease Prevention and Control) Guidelines for Health Professionals

Points to note:

  • No laboratory tests are required in the diagnosis of erythema migrans, which depend on a clinical evaluation and an assessment of tick exposure risk.
  • States that even patients with late LB can benefit from treatment.
  • Acknowledges key areas of uncertainty: Areas for further research include more detailed knowledge of the ecological aspects of Lyme borreliosis on a local, regional and EU scale, including distribution and prevalence of pathogenic and non-pathogenic genospecies, and more data on the epidemiology of Lyme borreliosis. Further improvements in diagnostic tests are also required.

EFNS (The European Federation of Neurological Societies)

November 2009 – EFNS guidelines on the diagnosis and management of European Lyme neuroborreliosis. Mygland A, Ljøstad U, Fingerle V, Rupprecht T, Schmutzhard E, Steiner I. Eur J Neurol. 2010;17:8-16.

Points to note:

  • Deals with neuroborreliosis only.
  • Contains recommendations on treatment but points out the lack of European treatment studies and controlled trials on treatment length.
  • Most recommendations are based on opinion because of the lack of evidence.
  • Recognises that studies show significant treatment failure rates, but makes no recommendation as to further treatment.

EUCALB European Concerted Action of Lyme Borreliosis is a website maintained by the ESCMID study group ESGBOR and reflects the views of a group of European clinicians.

Points to note:

  • Has useful summaries of different methods of diagnosis
  • Notes that routine blood counts and inflammatory markers are often normal in LB.
  • Provides a summary of treatment options used in Europe.
  • States that multiple EM should be treated as acute neuroborreliosis.
  • Sits on the fence with regards to chronic LB, whilst acknowledging that relapses occur.

DBG (The Deutsche Borreliose-Gesellschaft: German Borreliosis Society)

This is a multidisciplinary medical society. Its members are scientists and physicians who are concerned with Lyme and associated diseases.

Points to note:

  • Contains recommendations on longer term treatment but points out the lack of trials to provide evidence for these.
  • Contains treatment recommendations for co-infections.

 

USA Guidelines

IDSA (Infectious Diseases Society of America)

Points to note:

  • Recommends repeat treatment if objective symptoms persist or recur.
  • Attributes continuing symptoms beyond 3 separate courses of antibiotics to an unknown cause.
  • An IDSA review panel recommended changes to the current guidelines: comment on these can be read here.
  • These guidelines are under review. LDA submitted a public comment criticising the project proposal for this review.

 

ILADS (International Lyme and Associated Diseases Society) issued revised guidelines in 2014 which have been accepted by the USA National Guidelines Clearinghouse.

Points to note about the 2014 ILADS guidelines:

  • Uses an evidence-based approach whilst acknowledging this remains ‘sparse’ with much low level evidence.
  • Does not make restrictive recommendations and includes clinical expertise and patient/clinician values as key factors in the decision-making process.
  • Allows for prophylaxis following any tick bite with 20 days of an oral antibiotic.
  • Recommends at least 4-6 weeks of treatment for EM rash.
  • Recommends continuation of antibiotic treatment until recovery occurs
  • Recommends re-treatment in the case of relapse.