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Lyme disease

About

What is covered

This interactive flowchart covers diagnosing and managing Lyme disease. It aims to raise awareness of when Lyme disease should be suspected and ensure that people have prompt and consistent diagnosis and treatment. It does not cover preventing Lyme disease.

Updates

Updates to this interactive flowchart

18 July 2018 Table on antibiotic treatment for Lyme disease in children (under 12) according to symptoms amended. Correction made for duration of treatment for Lyme arthritis or acrodermatitis chronica atrophicans in children aged 9 to 12 with severe infection. Maximum doses for intravenous ceftriaxone treatment in children under 12 also added.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on diagnosing and managing Lyme disease in an interactive flowchart

What is covered

This interactive flowchart covers diagnosing and managing Lyme disease. It aims to raise awareness of when Lyme disease should be suspected and ensure that people have prompt and consistent diagnosis and treatment. It does not cover preventing Lyme disease.

Updates

Updates to this interactive flowchart

18 July 2018 Table on antibiotic treatment for Lyme disease in children (under 12) according to symptoms amended. Correction made for duration of treatment for Lyme arthritis or acrodermatitis chronica atrophicans in children aged 9 to 12 with severe infection. Maximum doses for intravenous ceftriaxone treatment in children under 12 also added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Lyme disease (2018) NICE guideline NG95

Quality standards

Quality statements

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

NICE has produced resources to help implement its guidance on:

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Test for Lyme disease

Lyme disease is caused by infection with bacteria from different species of Borrelia. The majority of tests for Lyme disease detect antibodies produced in response to infection by bacteria. The term Lyme disease is used when referring to both the disease and to tests for an antibody response. This reflects the terminology used in clinical practice.
Discuss the diagnosis and management of Lyme disease in children and young people under 18 years with a specialist, unless they have a single erythema migrans lesion and no other symptoms. Choose a specialist appropriate for the child or young person's symptoms dependent on availability, for example, a paediatrician, paediatric infectious disease specialist or a paediatric neurologist.

Jarisch-Herxheimer reaction

This is a systemic reaction, thought to be caused by the release of cytokines when antibiotics kill large numbers of bacteria. Symptoms include a worsening of fever, chills, muscle pains, and headache. The reaction can start between 1 and 12 hours after antibiotics are started but can also occur later and can last for a few hours or 1 or 2 days. The reaction is self-limiting and usually resolves within 24 to 48 hours.
It was originally reported in the treatment of syphilis but has been documented in tick-borne diseases including Lyme disease, leptospirosis and relapsing fever.

Antibiotic treatment

Erythema migrans

A number of studies examined antibiotic treatment of Lyme disease with erythema migrans using different antibiotics, doses and durations of treatment. However, many of the studies did not reflect current prescribing practices and the evidence was of poor quality.
For adults, there was evidence that doxycycline is more clinically effective than some other antibiotics. However, the evidence showed no clear difference in effectiveness between doxycycline, an amoxicillin/probenecid combination and azithromycin. The evidence also showed no benefit of intravenous or intramuscular cephalosporin over doxycycline. It was noted that doxycycline and amoxicillin are able to penetrate the blood-cerebrospinal fluid barrier and pass into the central nervous system, whereas azithromycin cannot. This may be important to prevent the development of further symptoms. Doxycycline can also be taken in a single daily dose, which may help with adherence.
Based on these factors, along with their knowledge and experience, the committee agreed on doxycycline as the initial treatment for adults and young people (aged 12 and over), with amoxicillin as an alternative, and azithromycin as a third option when both doxycycline and amoxicillin are contraindicated.
The committee acknowledged that infectious disease specialists currently treat Lyme disease in children aged 9 and above with doxycycline, although it is not licensed in the UK for children under 12, and it is contraindicated in this age group because of side effects, such as teeth staining. Based on their experience and knowledge, feedback from stakeholders, and the evidence for adults, the committee agreed that doxycycline is the most effective treatment for Lyme disease and that the risk of dental problems in children is low when it is used for short-term treatment (28 days or less). Therefore, doxycycline can be used as the initial treatment for Lyme disease in children aged 9 and above. The committee agreed on doxycycline doses based on their knowledge and experience of current practice both in the UK and the US.
The use of doxycycline in children under 9 years is currently limited by licensing and clinical experience. There was some evidence that amoxicillin and azithromycin were equally effective in children. Because of its ability to penetrate the blood-cerebrospinal fluid barrier, the committee agreed that children under 9 should be offered amoxicillin as the initial treatment, with azithromycin as an alternative treatment option, and that doses should be adjusted by weight.
Current guidelines give ranges for treatment duration, generally between 10 and 21 days, without guidance on when to use a longer or shorter course. The committee agreed that this is not clear enough for generalists. The evidence for treatment duration was limited. The committee decided that longer courses of 21 days of treatment should be offered as standard because of their concern at low cure rates in some studies and the lack of clear evidence for shorter courses. They also agreed that a longer course may be reassuring for people being treated for Lyme disease who continue to have symptoms. The evidence showed adverse event rates were not increased for longer courses.
Full details of the evidence and the committee's discussion are in evidence review D: management of erythema migrans.

Non-focal symptoms of Lyme disease

No studies were identified comparing different antibiotics for managing Lyme disease in people with non-focal symptoms (symptoms, such as fever, sweats and muscle pain, which are not specific to an organ system). However, the committee reviewed the evidence available for treating other symptoms and, based on this and their knowledge and experience, agreed that people with non-focal symptoms should be given the same treatment as people with erythema migrans.
Because of the uncertainties about diagnosis and management, the committee agreed that care of children and young people under 18 with Lyme disease and non-erythema migrans presentations should have their care discussed with a specialist.
Full details of the evidence and the committee's discussion are in evidence review E: management of non-specific symptoms.

Lyme disease affecting the cranial nerves, peripheral nervous system or central nervous system

The evidence for antibiotic treatment of Lyme disease affecting the nervous system was limited. One study showed a greater benefit with oral doxycycline than intravenous ceftriaxone in treating Lyme disease affecting the peripheral nervous system. However, both treatments showed low rates of cure (full resolution of neurological symptoms). The committee also noted that the study used a 14-day course of antibiotics, which is below the maximum treatment durations recommended by some current guidelines.
The committee agreed that people presenting with meningitis or encephalitis (before a diagnosis of Lyme disease) would receive treatment with intravenous ceftriaxone, and that intravenous treatment would achieve adequate concentrations in the central nervous system more rapidly than oral treatment.
The committee also discussed the management of neurosyphilis, which has similar central nervous system involvement. The committee considered that, although the evidence was limited, central nervous system symptoms in Lyme disease should be treated with a similar antibiotic dose to that recommended for neurosyphilis.
Once-daily ceftriaxone has the advantage of being given more easily as an outpatient treatment than other intravenous options, which allows completion of the course as an outpatient.
Taking these factors into account and based on their knowledge and experience, the committee agreed on a 21-day course of intravenous ceftriaxone 4 g daily as the initial treatment for adults and young people (aged 12 and over) with Lyme disease affecting the central nervous system, with a 21-day course of doxycycline 400 mg daily recommended as an alternative treatment. The higher dose (4 g) is the recommended dose for bacterial meningitis. For Lyme disease affecting the cranial nerves or the peripheral nervous system the committee agreed on a 21-day course of doxycycline 200-mg daily as the initial treatment for adults and young people (aged 12 and over), with amoxicillin recommended as an alternative treatment.
No studies were identified for nervous system symptoms in children. However, the committee agreed that the evidence for adults and young people could be used to support similar treatment for children aged 9 to 12 years, with the same antibiotics and duration of treatment but with doses adjusted by weight. The use of doxycycline in children under 9 years is currently limited by licensing and clinical experience.
Because of the importance of diagnosis and management, the committee also agreed that care of children and young people under 18 should be discussed with a specialist.
Full details of the evidence and the committee's discussion are in evidence review F: management of neuroborreliosis.

Lyme disease arthritis

The studies identified looked at antibiotic treatment in children, young people and adults with Lyme arthritis (inflammation affecting 1 or more joints). Evidence from 1 study showed that a 30-day course of doxycycline resulted in fewer symptom relapses and adverse events than 30 days of amoxicillin plus probenecid.
The committee agreed that longer courses of treatment are appropriate when treating Lyme arthritis because it is difficult for antibiotics to penetrate to the synovium and synovial fluid.
Taking these factors into account, the committee decided that a 28-day course of antibiotics would be appropriate and also practical, because antibiotics are available in weekly packs.
Because the evidence was limited, the committee also took into account evidence for other presentations of Lyme disease. Based on this, along with their knowledge and experience of current practice, the committee agreed that doxycycline should be offered to adults and young people (aged 12 and over) as the initial treatment, with amoxicillin recommended as an alternative treatment. The committee also agreed that if oral doxycycline and amoxicillin are contraindicated or unsuitable, 28 days of intravenous ceftriaxone should be offered.
Although there was no evidence for treating Lyme arthritis in children, the committee agreed that the evidence for adults and young people could be used to support similar treatment for children aged 9 to 12 years, with the same antibiotics and duration of treatment but with doses adjusted by weight. The use of doxycycline in children under 9 years is currently limited by licensing and clinical experience.
Because of the importance of correct diagnosis and management, the committee agreed that care of children and young people under 18 with Lyme disease and non-erythema migrans presentations should be discussed with a specialist.
Full details of the evidence and the committee's discussion are in evidence review G: management of arthritis.

Acrodermatitis chronica atrophicans

One study suggested that a 30-day course of doxycycline was better for treating acrodermatitis chronica atrophicans than a 20-day course of treatment. Oral doxycycline given for 30 days was also more effective than a 15-day course of intravenous ceftriaxone. The committee agreed that a longer course of treatment might be beneficial because it is difficult for antibiotics to penetrate the affected skin. They also took into account evidence for Lyme arthritis, which justified a longer treatment course to allow penetration into joints. The committee decided that a 28-day course of antibiotics would be appropriate and practical, because antibiotics are available in weekly packs.
The evidence for antibiotics was very limited, so the committee also took into account evidence for other presentations of Lyme disease and their experience and knowledge of current practice. The committee agreed that doxycycline should be offered to adults and young people (aged 12 and over) as the initial treatment, with amoxicillin recommended as an alternative treatment. The committee also agreed that if oral doxycycline and amoxicillin are contraindicated or unsuitable, intravenous ceftriaxone could be offered.
Although there was no evidence for treating acrodermatitis chronica atrophicans in children, the committee agreed that the evidence for adults and young people could be used to support similar treatment for children aged 9 to 12 years, with the same antibiotics and duration of treatment but with doses adjusted by weight. The use of doxycycline in children under 9 years is currently limited by licensing and clinical experience.
Because of the importance of correct diagnosis and management, the committee agreed that care of children and young people under 18 with Lyme disease and non-erythema migrans presentations should be discussed with a specialist.
Full details of the evidence and the committee's discussion are in evidence review H: management of acrodermatitis chronica atrophicans.

Lyme carditis

No studies of antibiotic treatment for heart problems caused by Lyme disease were identified. Therefore, the committee reviewed the evidence available for treating other symptoms of Lyme disease and used this, their experience of current practice and their knowledge of care for people with heart problems to develop the recommendations.
The committee decided that a 21-day course of doxycycline would be appropriate as the initial treatment for adults and young people (aged 12 and over) with carditis who are stable, with a 21-day course of intravenous ceftriaxone recommended as an alternative treatment.
The committee noted that people with severe heart problems are likely to need treatment in hospital from cardiologists. They agreed that intravenous ceftriaxone for 21 days would therefore be suitable as the initial treatment for people with carditis who are haemodynamically unstable.
Because of the lack of evidence for treatment in children, the committee agreed that the evidence for adults and young people could be used to support similar treatment for children aged 9 to 12 years, with the same antibiotics and duration of treatment but with doses adjusted by weight. The use of doxycycline in children under 9 years is currently limited by licensing and clinical experience.
Because of the importance of correct diagnosis and management, the committee agreed that care of children and young people under 18 with Lyme disease and focal symptoms such as carditis should be discussed with a specialist.
The committee also noted that azithromycin should not be used to treat people with cardiac abnormalities because of its effect on the QT interval.
Full details of the evidence and the committee's discussion are in evidence review I: management of carditis.

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.

Raising awareness of Lyme disease

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.

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.
Full details of the evidence and the committee's discussion are in evidence review A: awareness of Lyme disease.

Clinical assessment

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.
Full details of the evidence and the committee's discussion are in evidence review B: diagnostic accuracy of signs and symptoms.

Emergency referrals

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.

How the recommendation 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.
Full details of the evidence and the committee's discussion are in evidence review D: management of erythema migrans.

Specialist advice on diagnosing and managing Lyme disease in children and young people

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.

How the recommendation might affect 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.
Full details of the evidence and the committee's discussion are in evidence review D: management of erythema migrans.

Specialist advice on diagnosing and managing Lyme disease in adults

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.
Full details of the evidence and the committee's discussion are in evidence review D: management of erythema migrans.

Information for people with Lyme disease

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.
Full details of the evidence and the committee's discussion are in evidence review N: information needs.

Laboratory investigations

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 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 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.

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.
Full details of the evidence and the committee's discussion are in evidence review C: diagnostic tests.

Lyme disease during and after pregnancy

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 the 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.
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.
Full details of the evidence and the committee's discussion are in evidence review M: transmission.

Ongoing symptoms after antibiotic treatment

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.
Full details of the evidence and the committee's discussion are in evidence review L: management of ongoing symptoms.

Assessing and managing ongoing symptoms

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.
Full details of the evidence and the committee's discussion are in evidence review L: management of ongoing symptoms.

Antibiotic treatment for Lyme disease in adults and young people (aged 12 and over) according to symptoms a

Symptoms
Treatment
First alternative
Second alternative
Lyme disease without focal symptoms
Erythema migrans and/or non-focal symptoms
Oral doxycycline: 100 mg twice per day or 200 mg once per day for 21 days
Oral amoxicillin: 1 g 3 times per day for 21 days
Oral azithromycin b: 500 mg daily for 17 days
Lyme disease with focal symptoms
Lyme disease affecting the cranial nerves or peripheral nervous system
Oral doxycycline: 100 mg twice per day or 200 mg once per day for 21 days
Oral amoxicillin: 1 g 3 times per day for 21 days
Lyme disease affecting the central nervous system
Intravenous ceftriaxone: 2 g twice per day or 4 g once per day for 21 days (when an oral switch is being considered, use doxycycline)
Oral doxycycline: 200 mg twice per day or 400 mg once per day for 21 days
Lyme disease arthritis
Oral doxycycline: 100 mg twice per day or 200 mg once per day for 28 days
Oral amoxicillin: 1 g 3 times per day for 28 days
Intravenous ceftriaxone: 2 g once per day for 28 days
Acrodermatitis chronica atrophicans
Lyme carditis b
Oral doxycycline: 100 mg twice per day or 200 mg once per day for 21 days
Intravenous ceftriaxone: 2 g once per day for 21 days
Lyme carditis and haemodynamically unstable
Intravenous ceftriaxone: 2 g once per day for 21 days (when an oral switch is being considered, use doxycycline)
a For Lyme disease suspected during pregnancy, use appropriate antibiotics for stage of pregnancy.
b Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval.

Antibiotic treatment for Lyme disease in children (under 12) according to symptoms a, b, c

Symptoms
Age
Treatment
First alternative
Second alternative
Lyme disease without focal symptoms
Erythema migrans and/or non-focal symptoms
9-12 years
Oral doxycycline a for children under 45 kg: 5 mg/kg in 2 divided doses on day 1 followed by 2.5 mg/kg daily in 1 or 2 divided doses for a total of 21 days. For severe infections, up to 5 mg/kg daily for 21 days
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 21 days
Oral azithromycin d, e for children 50 kg and under: 10 mg/kg daily for 17 days
Under 9
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 21 days
Oral azithromycin d, e for children 50 kg and under: 10 mg/kg daily for 17 days
Lyme disease with focal symptoms
Lyme disease affecting the cranial nerves or peripheral nervous system
9-12 years
Oral doxycycline a for children under 45 kg: 5 mg/kg in 2 divided doses on day 1 followed by 2.5 mg/kg daily in 1 or 2 divided doses for a total of 21 days. For severe infections, up to 5 mg/kg daily for 21 days
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 21 days
Under 9
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 21 days
Lyme disease affecting the central nervous system
9-12 years
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 4 g) once per day for 21 days
Oral doxycycline a for children under 45 kg: 5 mg/kg in 2 divided doses on day 1 followed by 2.5 mg/kg daily in 1 or 2 divided doses for a total of 21 days. For severe infections, up to 5 mg/kg daily
Under 9
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 4 g) once per day for 21 days
Lyme arthritis or acrodermatitis chronica atrophicans
9-12 years
Oral doxycycline a for children under 45 kg: 5 mg/kg in 2 divided doses on day 1 followed by 2.5 mg/kg daily in 1 or 2 divided doses for a total of 28 days. For severe infections, up to 5 mg/kg daily for 28 days
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 28 days
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 2 g) once per day for 28 days
Under 9
Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 28 days
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 2 g) once per day for 28 days
Lyme carditis (both haemodynamically stable and unstable)e
9-12 years
Oral doxycycline a for children under 45 kg: 5 mg/kg in 2 divided doses on day 1 followed by 2.5 mg/kg daily in 1 or 2 divided doses for a total of 21 days. For severe infections, up to 5 mg/kg daily for 21 days
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 2 g) once per day for 21 days
Under 9
Intravenous ceftriaxone for children 50 kg and under: 80 mg/kg (up to 2 g) once per day for 21 days
a At the time of publication (April 2018), doxycycline did not have a UK marketing authorisation for this indication in children under 12 years and is contraindicated. The use of doxycycline for children aged 9 years and above in infections where doxycycline is considered first line in adult practice is accepted specialist practice. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the GMC's Prescribing guidance: prescribing unlicensed medicines for further information.
b Discuss management of Lyme disease in children and young people with a specialist, unless they have a single erythema migran lesion with no other symptoms.
c Children weighing more than the amounts specified should be treated according to the table on antibiotic treatment for Lyme disease in adults and young people (aged 12 and over) according to symptoms.
d At the time of publication (April 2018), azithromycin did not have a UK marketing authorisation for this indication in children under 12 years. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the GMC's Prescribing guidance: prescribing unlicensed medicines for further information.
e Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval.

Glossary

enzyme-linked immunosorbent assay
UK accreditation service

Paths in this pathway

Pathway created: April 2018 Last updated: July 2018

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