Lyme disease: summary of NICE guidance

Awareness

The incidence of Lyme disease is unknown. Most estimates are based on laboratory confirmed cases and therefore do not include those diagnosed on clinical presentation alone or those that go undiagnosed. The indicative rash, erythema migrans, is not always present, noticed, or recognised, and other symptoms overlap with many other common conditions. The following recommendations were developed to raise awareness of factors affecting Lyme disease risk and when to suspect Lyme disease.

• Be aware that:

  • The bacteria that cause Lyme disease are transmitted by the bite of an infected tick

  • Ticks are mainly found in grassy and wooded areas, including urban gardens and parks

  • Tick bites may not always be noticed

  • Infected ticks are found throughout the UK and Ireland; although some areas seem to have a higher prevalence of infected ticks, prevalence data are incomplete

  • Particularly high risk areas are the south of England and Scottish Highlands, but infection can occur in many areas

  • Lyme disease may be more prevalent in parts of central, eastern, and northern Europe (including Scandinavia) and parts of Asia, the US, and Canada.

    [Based on the experience and opinion of the Guideline Committee (GC) and informed by an evidence review on Lyme disease incidence in the UK]

• Be aware that most tick bites do not transmit Lyme disease. [Based on the experience and opinion of the GC]

• Give people advice about:

  • Where ticks are commonly found (such as grassy and wooded areas, including urban gardens and parks)

  • The importance of prompt, correct tick removal and how to do this (see box 1)

  • Covering exposed skin and using insect repellents that protect against ticks

  • How to check themselves and their children for ticks on the skin

  • Sources of information on Lyme disease, such as Public Health England, and organisations providing information and support, such as patient charities.

    [Based on the experience and opinion of the GC]

Diagnosis

Figure 1 details the guidance for use of tests in diagnosis of Lyme disease.

Fig 1

Algorithm for laboratory investigations and diagnosis of Lyme disease

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• Diagnose Lyme disease in people with erythema migrans (fig 2), a red rash that:

  • Increases in size and may sometimes have a central clearing

  • Is not usually itchy, hot, or painful

  • Usually becomes visible from one to four weeks (but can appear from 3 days to 3 months) after a tick bite and lasts for several weeks

  • Is usually at the site of a tick bite.

• Be aware that a rash that is not erythema migrans can develop as a reaction to a tick bite. This rash:

  • Usually develops and recedes within 48 hours from the time of the tick bite

  • Is more likely than erythema migrans to be hot, itchy or painful

  • May be caused by an inflammatory reaction or infection with a common skin pathogen.

    [Based on the experience and opinion of the GC]

• Consider the possibility of Lyme disease in people presenting with several of the following symptoms, because Lyme disease is a possible but uncommon cause of:

  • Fever and sweats

  • Swollen glands

  • Malaise

  • Fatigue

  • Neck pain or stiffness

  • Migratory joint or muscle aches and pain

  • Cognitive impairment such as memory problems and difficulty concentrating (sometimes described as “brain fog”)

  • Headache

  • Paraesthesia.

    [Based on the experience and opinion of the GC]

• Consider the possibility of Lyme disease in people presenting with symptoms and signs relating to one or more organ systems (focal symptoms) because Lyme disease is a possible but uncommon cause of:

  • Neurological symptoms (such as facial palsy or other unexplained cranial nerve palsies, meningitis, mononeuritis multiplex or other unexplained radiculopathy, or, rarely, encephalitis, neuropsychiatric presentations, or unexplained white matter changes on brain imaging)

  • Inflammatory arthritis affecting one or more joints that may be fluctuating and migratory

  • Cardiac problems such as heart block or pericarditis

  • Eye symptoms such as uveitis or keratitis

  • Skin rashes such as acrodermatitis chronica atrophicans or lymphocytoma.

    [Based on very low quality evidence from observational studies and the experience and opinion of the GC]

• If a person presents with symptoms that suggest the possibility of Lyme disease, explore how long the person has had symptoms and their history of possible tick exposure.

  • For example, ask about:

    • Activities that might have exposed them to ticks

    • Travel to areas where Lyme disease is known to be highly prevalent.

  • Do not rule out the possibility of Lyme disease in people with symptoms but no clear history of tick exposure.

    [Based on the experience and opinion of the GC]

• Use a combination of clinical presentation and laboratory testing to guide diagnosis and treatment in people without erythema migrans (see fig 1). Do not rule out diagnosis if tests are negative but there is high clinical suspicion of Lyme disease. [Based on very low quality evidence from observational studies and the experience and opinion of the GC]

Fig 2

Classic erythema migrans of Lyme disease

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The most common laboratory tests used when Lyme disease is suspected are serological tests that detect antibodies to the bacteria causing Lyme disease. This is based on a two tier approach, where a sensitive initial test is performed first, followed by a more specific confirmatory test in case of a positive or equivocal initial test result. When combined with clinical assessment, the tests can be helpful in supporting diagnosis.

• Carry out tests for Lyme disease only at UK accreditation service (UKAS) accredited laboratories that:

  • Use validated tests (validation should include published evidence on the test methodology, its relation to Lyme disease, and independent reports of performance)

  • Participate in a formal external quality assurance programme.

    [Based on the experience and opinion of the GC]

Management

The recommendations on antibiotic management aim to provide clear guidance on choice of antibiotic, dose, treatment duration, and circumstances when additional courses of treatment or referral to specialists might be considered. Doses and duration of antibiotic treatment have been chosen at the higher ranges of formulary doses and lengths of treatment to avoid the possibility of under-treatment. There was a lack of evidence to support extended courses of antibiotics for people with persisting symptoms.

• Treat people with Lyme disease according to the infographic (also supplementary tables 1 and 2 on bmj.com)

• Discuss diagnosis and management of all children and young people with Lyme disease and symptoms in addition to erythema migrans with a specialist

• If an adult with Lyme disease has focal symptoms, consider a discussion with or referral to an appropriate specialist without delaying treatment

• If symptoms that may be related to Lyme disease persist, do not continue to improve, or worsen after antibiotic treatment, review the person's history and symptoms to explore:

  • Possible alternative causes of the symptoms

  • If reinfection may have occurred

  • If treatment may have failed

  • Details of previous treatment, including whether the course of antibiotics was completed without interruption

  • If symptoms may be related to organ damage caused by Lyme disease, such as nerve palsy.

    [Based on the experience and opinion of the GC]

• Consider a second course of antibiotics for people with ongoing symptoms if treatment may have failed. Use an alternative antibiotic to the initial course. For example, for adults with Lyme disease and arthritis, offer amoxicillin if the person has completed an initial course of doxycycline. [Based on the experience and opinion of the GC]

• If a person has ongoing symptoms after two completed courses of antibiotics for Lyme disease:

  • Do not routinely offer further antibiotics and

  • Consider discussion with the English or Scottish national reference laboratory or discussion or referral to a specialist appropriate for the person’s symptoms (such as an adult or paediatric infection specialist, rheumatologist, or neurologist).

    [Based on moderate to very low quality evidence from randomised controlled trials and the experience and opinion of the GC]

• Support people who have ongoing symptoms after treatment for Lyme disease by:

  • Encouraging and helping them to access additional services, including referring them to adult social care for a care and support needs assessment if they would benefit from these

  • Communicating with children and families social care, schools and higher education, and employers about the person’s need for a gradual return to activities, if relevant.

Explain the diagnosis and uncertainties

The uncertainty that exists as a result of lack of good evidence is difficult for people with Lyme disease and can lead to fear and frustration. It is essential that people with diagnosed or suspected Lyme disease are provided with support as well as direction to good sources of information and clear communication about diagnosis and management, including uncertainties.

• Tell people that tests for Lyme disease have limitations. Explain that both false positive and false negative results can occur and what this means. [Based on very low quality evidence from observational studies and the experience and opinion of the GC]

• Explain that most tests for Lyme disease assess the presence of antibodies and that the accuracy of tests may be reduced if:

  • Testing is carried out too early (before antibodies have developed)

  • The person has reduced immunity (such as a person receiving immunosuppressant treatment) which might affect the development of antibodies.

    [Based on the experience and opinion of the GC]

• Explain to people with ongoing symptoms after antibiotic treatment for Lyme disease that:

  • Continuing symptoms may not mean they still have an active infection

  • Symptoms of Lyme disease may take months or years to resolve even after treatment

  • Some symptoms may be a consequence of permanent damage from infection

  • There is no test for active infection and an alternative diagnosis may explain their symptoms.

    [Based on the experience and opinion of the GC]