Lyme disease

Why the committee made the recommendations

The committee agreed that raising awareness is important to improve diagnosis and management of Lyme disease. Based on the committee's knowledge and experience, and some limited evidence on UK incidence, they agreed to highlight how infection occurs, typical tick habitats and areas of higher risk. This may help to guide healthcare professionals, for example, in recognising the possibility of Lyme disease when a person is unaware that they have been bitten by a tick or in areas where ticks are found but Lyme disease is not highly prevalent.

The committee also agreed that people who may have been exposed to ticks should be given advice to help avoid Lyme disease in the future.

Because of the lack of evidence in this area, the committee also developed a research recommendation on the clinical epidemiology of Lyme disease in the UK.

How the recommendations might affect practice

The recommendations aim to improve awareness of Lyme disease, to promote early investigation and treatment, and to optimise outcomes in people with Lyme disease. They will change current practice by prompting healthcare professionals to think about the possibility of Lyme disease. This may result in an increase in testing and treatment, but the cost of this is likely to be balanced by the benefits of improved recognition and early treatment.

Return to recommendations

Why the committee made the recommendations

The committee reviewed evidence on the diagnostic accuracy of some specific signs and symptoms (erythema migrans, facial palsy, lymphocytoma, acrodermatitis chronica atrophicans and heart block or arrhythmias) to assess if any could be used to diagnose Lyme disease or to indicate that testing should be carried out.

Erythema migrans only occurs in Lyme disease and may be used to diagnose Lyme disease. The committee agreed that the evidence, although limited, supported this. Some healthcare professionals may not be familiar with erythema migrans, so a description of the rash and its characteristics was included.

Lyme disease has a varied presentation and erythema migrans is not always present, so the assessment of other signs and symptoms is important. The evidence was not strong enough for the committee to recommend diagnosis, testing or treatment based on any other symptom or sign alone. However, the committee noted a number of potential presentations of Lyme disease that should alert healthcare professionals to consider the possibility of Lyme disease and prompt a discussion about the possibility of tick exposure. Based on their knowledge and experience, the committee agreed to highlight factors to consider in history and presentation to help with clinical decision-making.

How the recommendations might affect practice

Current practice is to diagnose and treat Lyme disease in people with erythema migrans. People who present without erythema migrans but whose history and presentation are consistent with Lyme disease are offered testing. The recommendations will not change current practice but should serve as a reminder to healthcare professionals, particularly in areas where Lyme disease is less common, to think about Lyme disease as a differential diagnosis. Implementing these recommendations is unlikely to involve additional costs and may improve recognition and diagnosis.

Return to recommendations

Why the committee made the recommendations

The committee agreed that laboratory testing is unnecessary for people presenting with erythema migrans, because the rash is very specific to Lyme disease and prompt treatment will prevent further symptoms developing. However, most other symptoms associated with Lyme disease have other more common causes, so testing may be helpful to ensure accurate diagnosis and appropriate treatment.

Based on the evidence on test accuracy, the committee agreed that test results need careful interpretation alongside clinical assessment to guide diagnosis. Because of the limitations of tests, Lyme disease should not be ruled out by negative tests if it is strongly suggested by the clinical assessment. The committee decided that treatment could be started at the same time as testing if clinical assessment strongly suggests Lyme disease because prompt treatment is important.

The committee agreed a strategy of 2‑tier testing (an initial and confirmatory test), which the evidence indicated was potentially cost saving. Initial testing with a combination IgM and IgG enzyme-linked immunosorbent assay (ELISA) for Lyme disease should be offered because the evidence generally showed better accuracy (both sensitivity and specificity) for combined tests compared to IgM‑only and IgG‑only tests. The evidence was best for tests based on purified or recombinant antigens derived from the VlsE protein or its IR6 domain peptide (such as a C6).

For people with a negative ELISA result who continue to have symptoms, the committee agreed that clinical review would ensure that alternative diagnoses are not missed. In addition, because antibodies take some time to develop, repeat testing would be warranted for people who may have had the initial test too early, before an immune response has developed. If symptoms have been present for 12 weeks, the committee agreed that an immunoblot would help rule out or confirm diagnosis where uncertainty still remains.

The committee agreed that for people with negative test results who continue to have symptoms, discussion with or referral to a specialist for further review might be beneficial.

The committee agreed that testing should be done in UKAS-accredited laboratories and that any tests used for diagnosis should be validated before they are used to diagnose Lyme disease to avoid unreliable and misleading results, which may lead to misdiagnosis.

Based on their knowledge and experience, the committee agreed that Borrelia burgdorferi sensu lato (sl) infection does not behave differently in children than adults, but acknowledged that a young child's immune responses might not be as rapid and effective. The limited evidence in children did not show a noticeable difference in test accuracy compared with adults. Therefore, the committee decided that separate recommendations for testing in children were unnecessary.

The committee considered it important that people being tested for Lyme disease understand how the tests work, their limitations and the importance of basing decisions on tests that are valid.

The committee noted that further research would be helpful and agreed to make research recommendations to determine the seroprevalence of antibodies to tick-borne infections in the UK and to clarify further the most effective laboratory tests at different stages of Lyme disease.

How the recommendations might affect practice

A 2‑tiered testing system is used in current practice, in which a positive result on an initial ELISA leads to a confirmatory immunoblot test. A negative result on an initial ELISA would not usually lead to a confirmatory immunoblot test. Therefore, the recommendation to carry out an immunoblot test, despite an initial negative ELISA when there is clinical suspicion of Lyme disease would be a change to practice and increase the number of people receiving this test. However, this would only apply to a small population, so this recommendation is not likely to have a significant resource impact.

Return to recommendations

Why the committee made the recommendations

Lyme disease will not usually be considered as the most likely cause when people present with neurological and other symptoms that need emergency referral (such as central nervous system infection or heart block). However, the committee wanted to emphasise that if the history and physical findings suggest Lyme disease, usual clinical practice is still appropriate, because people may need additional supportive treatment from specialist services as well as appropriate antibiotics.

The type of problems that children with Lyme disease may develop, such as arthritis or facial palsy, are uncommon and the committee decided to recommend that management for children and young people with presentations other than uncomplicated erythema migrans (a single lesion with no other symptoms) should be discussed with a specialist to ensure the diagnosis is correct and for advice on antibiotic treatment.

For adults with focal symptoms such as arthritis, the committee agreed that a discussion with a specialist may be considered, but that treatment can be started.

How the recommendations might affect practice

People who are systemically unwell with neurological or cardiac disease are referred to hospital for urgent treatment, so this recommendation should not lead to a change in existing practice.

The occurrence of symptoms such as arthritis and facial palsy are uncommon in children, so it is expected that most children with these symptoms are already seen in specialist services; therefore, this recommendation should not result in a large change of practice.

Return to recommendations

Why the committee made the recommendations

How the recommendations might affect practice

The recommendations aim to standardise antibiotic treatment and to provide a consistent framework for good practice in managing Lyme disease. Overall, there may be changes to prescribing practices, but the impact is likely to be small.

Full details of the evidence and the committee's discussion are in the evidence reviews.

Return to recommendations

Why the committee made the recommendations

People who have had treatment for Lyme disease sometimes report ongoing symptoms. The cause is often not clear and includes re‑infection, or organ damage caused by Lyme disease, which may take a long time to heal or may even be permanent.

The evidence available for treating ongoing symptoms did not show benefit from prolonged treatment with antibiotics. However, based on their knowledge and experience, the committee agreed that treatment failure could occur and that a second course of an alternative antibiotic might sometimes be appropriate. The committee noted the importance of considering alternative diagnoses to prevent inappropriate antibiotic treatment and misdiagnosis.

The committee agreed that people with ongoing symptoms should not routinely be offered more than 2 courses of antibiotics because of lack of evidence of benefit. However, discussion with a specialist or referral should be considered for some people, and discussion with the UK national reference laboratory might be helpful, for example, if a different tick-borne disease is possible.

People who have a slow recovery from Lyme disease may need additional support and access to social care. The committee agreed that it was important that healthcare professionals help people with long-term symptoms related to Lyme disease to access support if needed.

How the recommendations might affect practice

Current treatment for Lyme disease is a single course of antibiotics. Treatment for ongoing symptoms is unclear and practice varies. Further antibiotic treatment is now recommended as an option if persisting infection is a possibility. This will standardise practice, but may cause an increase in antibiotic prescribing in a small number of patients. The committee agreed that this change in practice would not result in a significant resource impact given the small number of people with treatment failure.

Return to recommendations

Why the committee made the recommendations

No specific evidence review was carried out to inform recommendations on support, referral to social services or the need to consider assessing and managing other symptoms related to Lyme disease, such as chronic pain, fatigue or depression. The committee, however, acknowledged that some people with Lyme disease experience a slow recovery and may need professional support. Some people with Lyme disease feel that their needs are not considered in an appropriate way. Based on their knowledge and clinical experience, the committee agreed that healthcare professionals should consider the possibility of such needs and provide support if needed, including regular review for people with ongoing symptoms.

How the recommendations might affect practice

Some people with Lyme disease may need support or social services, especially when they have a slow recovery. Social services needs assessments are carried out by local authorities and will not affect NHS practice.

Some people with Lyme disease may also present with related symptoms, such as chronic pain, depression or fatigue. Guidance for managing these symptoms already exists and therefore there will be no change to existing clinical practice.

Return to recommendations

Why the committee made the recommendations

The committee acknowledged that mother-to-baby transmission of Lyme disease is possible in theory. There was an absence of evidence, but the risk appears to be very low. The committee decided that women could be reassured that pregnancy and their baby are unlikely to be affected, and highlighted the importance of completing treatment. It was also agreed that pregnant women should be treated following usual practice, but using antibiotics suitable in pregnancy.

Given the absence of evidence and the lack of a standard approach to care, the committee agreed that care of babies born to mothers with Lyme disease during pregnancy should be discussed with a paediatric infectious disease specialist if the mother has concerns about her baby. In addition, to ensure that babies with Lyme disease do not go untreated, the committee agreed that babies should receive treatment if they have serology showing IgM antibodies specific to Lyme disease or symptoms that might be caused by Lyme disease.

The committee agreed that more evidence on Lyme disease in pregnancy would be helpful to inform future guidance. Pregnant women with Lyme disease or suspected Lyme disease are a population of particular interest in the research recommendation on the clinical epidemiology of Lyme disease in the UK.

No evidence was found for transmission of Lyme disease through sexual contact or blood products and the committee agreed that they could not make recommendations in these areas.

How the recommendations might affect practice

There is no standardised approach to the care of babies born to mothers who had Lyme disease in pregnancy. The recommendations are unlikely to have a big impact on practice, but should reduce variation and provide guidance to reassure women and healthcare professionals.

Return to recommendations

Why the committee made the recommendations

There was a lack of evidence identified on the information needs of people with suspected or confirmed Lyme disease, or specific Lyme disease presentations. However, some evidence was identified that highlighted the need for information addressing the medical uncertainties of Lyme disease.

The guideline committee used this evidence, the evidence reviews on diagnosis and management, and their experience to make recommendations to inform people being investigated for and diagnosed with Lyme disease. The committee agreed that people would benefit from a better understanding of the nature of Lyme disease, the accuracy and limitations of testing, and issues with treatment and follow‑up.

How the recommendations might affect practice

The recommendations standardise and reinforce current good practice. Many healthcare professionals will not need to change their current practice.

Return to recommendations 1.2.24 to 1.2.27 and 1.4.1 to 1.4.4.