Guidance

Recommendations

Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about 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 professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Awareness of Lyme disease

1.1.1

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, and although some areas appear 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.

1.1.2

Be aware that most tick bites do not transmit Lyme disease and that prompt, correct removal of the tick reduces the risk of transmission.

1.1.3

Give people advice about:

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on awareness of Lyme disease.

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

1.2 Diagnosis

Clinical assessment

1.2.1

Diagnose Lyme disease in people with erythema migrans, 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 1 to 4 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.

    See also NICE's resource on different presentations of erythema migrans.

1.2.2

Be aware that a rash, which is not erythema migrans, can develop as a reaction to a tick bite that:

  • usually develops and recedes during 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.

1.2.3

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.

1.2.4

Consider the possibility of Lyme disease in people presenting with symptoms and signs relating to 1 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 1 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.

1.2.5

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.

1.2.6

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

1.2.7

Do not diagnose Lyme disease in people without symptoms, even if they have had a tick bite.

1.2.8

Be cautious about diagnosing Lyme disease in people without a supportive history or positive serological testing because of the risk of:

  • missing an alternative diagnosis

  • providing inappropriate treatment.

1.2.9

Follow usual clinical practice to manage symptoms, for example, pain relief for headaches or muscle pain, in people being assessed for Lyme disease.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on clinical assessment.

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

Laboratory investigations to support diagnosis

We have also produced a NICE visual summary of the recommendations on testing for Lyme disease.

1.2.11

Diagnose and treat Lyme disease without laboratory testing in people with erythema migrans.

1.2.12

Use a combination of clinical presentation and laboratory testing to guide diagnosis and treatment in people without erythema migrans. Do not rule out diagnosis if tests are negative but there is high clinical suspicion of Lyme disease.

1.2.13

If there is a clinical suspicion of Lyme disease in people without erythema migrans:

  • offer an enzyme-linked immunosorbent assay (ELISA) test for Lyme disease and

  • consider starting treatment with antibiotics while waiting for the results if there is a high clinical suspicion.

1.2.14

Test for both IgM and IgG antibodies using ELISAs based on purified or recombinant antigens derived from the VlsE protein or its IR6 domain peptide (such as C6 ELISA).

1.2.15

If the ELISA is positive or equivocal:

  • perform an immunoblot test for Lyme disease and

  • consider starting treatment with antibiotics while waiting for the results if there is a high clinical suspicion of Lyme disease.

1.2.16

If the ELISA for Lyme disease is negative and the person still has symptoms, review their history and symptoms, and think about the possibility of an alternative diagnosis.

1.2.17

If Lyme disease is still suspected in people with a negative ELISA who were tested within 4 weeks from symptom onset, repeat the ELISA 4 to 6 weeks after the first ELISA test.

1.2.18

If Lyme disease is still suspected in people with a negative ELISA who have had symptoms for 12 weeks or more, perform an immunoblot test.

1.2.19

Diagnose Lyme disease in people with symptoms of Lyme disease and a positive immunoblot test.

1.2.20

If the immunoblot test for Lyme disease is negative (regardless of the ELISA result) but symptoms persist, consider a discussion with or referral to a specialist, to:

  • review whether further tests may be needed for suspected Lyme disease, for example, synovial fluid aspirate or biopsy, or lumbar puncture for cerebrospinal fluid analysis or

  • consider alternative diagnoses (both infectious, including other tick-borne diseases, and non-infectious diseases).

    Choose a specialist appropriate for the person's history or symptoms, for example, an adult or paediatric infection specialist, rheumatologist or neurologist.

1.2.21

If the immunoblot test for Lyme disease is negative and symptoms have resolved, explain to the person that no treatment is required.

1.2.22

Carry out tests for Lyme disease only at laboratories that:

  • are accredited by the UK accreditation service (UKAS) and

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

  • participate in a formal external quality assurance programme.

1.2.23

Do not routinely diagnose Lyme disease based only on tests done outside the NHS, unless the laboratory used is accredited, participates in formal external quality assurance programmes and uses validated tests (see recommendation 1.2.22). If there is any doubt about tests:

  • review the person's clinical presentation and

  • carry out testing again using a UKAS-accredited laboratory and/or seek advice from a national reference laboratory.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on laboratory investigations.

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

Information for people being tested for Lyme disease

1.2.24

Tell people that tests for Lyme disease have limitations. Explain that both false-positive and false-negative results can occur and what this means.

1.2.25

Explain to people that most tests for Lyme disease assess for 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, for example, people on immunosuppressant treatments, which might affect the development of antibodies.

1.2.26

Advise people that tests from non-UKAS laboratories may not have been fully evaluated to diagnose Lyme disease.

1.2.27

Explain to people that:

  • the symptoms and signs associated with Lyme disease overlap with those of other conditions

  • they will be assessed for alternative diagnoses if their tests are negative and their symptoms have not resolved

  • symptoms such as tiredness, headache and muscle pain are common, and a specific medical cause is often not found.

To find out why the committee made the recommendations and how they might affect practice, see the rationale and impact section on information.

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

1.3 Management

Emergency referral

1.3.1

Follow usual clinical practice for emergency referrals, for example, in people with symptoms that suggest central nervous system infection, uveitis or cardiac complications such as complete heart block, even if Lyme disease is suspected.

Specialist advice

1.3.2

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.

1.3.3

If an adult with Lyme disease has focal symptoms, consider a discussion with or referral to a specialist, without delaying treatment. Choose a specialist appropriate for the person's symptoms, for example, an adult infection specialist, rheumatologist or neurologist.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on emergency referral and specialist advice.

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

Antibiotic treatment

1.3.5

For children (under 12) diagnosed with Lyme disease, offer antibiotic treatment according to their symptoms as described in table 2. (Note that management of Lyme disease in children and young people should be discussed with a specialist in line with recommendation 1.3.2.)

1.3.7

If symptoms worsen during treatment for Lyme disease, assess for an allergic reaction to the antibiotic. Be aware that a Jarisch–Herxheimer reaction may cause an exacerbation of symptoms but does not usually warrant stopping treatment.

1.3.8

Consider clinical review during or after treatment for Lyme disease to assess for possible side effects and response to treatment.

Table 1 Antibiotic treatment for Lyme disease in adults and young people (aged 12 and over) according to symptoms
Symptoms Treatment First alternative Second alternative
Lyme disease without focal symptoms but with 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:

500 mg daily for 17 days

Note: Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval.
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 with 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
Lyme disease with acrodermatitis chronica atrophicans

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
Lyme disease with Lyme carditis

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 disease with Lyme carditis and haemodynamically unstable

Intravenous ceftriaxone:

2 g once per day for 21 days (when an oral switch is being considered, use doxycycline)

–

–

Note: Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval.

Table 2 Antibiotic treatment for Lyme disease in children (under 12) according to symptoms
Symptoms Age Treatment First alternative Second alternative
Lyme disease without focal symptoms but with erythema migrans and/or non-focal symptoms

9–12 years

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

Oral amoxicillin for children 33 kg and under:

30 mg/kg 3 times per day for 21 days

Oral azithromycin for children 50 kg and under:

10 mg/kg daily for 17 days

In April 2018, this use of azithromycin was off-label in children under 12 years. See NICE's information on prescribing medicines

Note: Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval
Lyme disease without focal symptoms with erythema migrans and/or non-focal symptoms

Under 9

Oral amoxicillin for children 33 kg and under: 30 mg/kg 3 times per day for 21 days

Oral azithromycin for children 50 kg and under:

10 mg/kg daily for 17 days

In April 2018, this use of azithromycin was off-label in children under 12 years. See NICE's information on prescribing medicines

Note: Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval

–
Lyme disease affecting the cranial nerves or peripheral nervous system

9–12 years

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

Oral amoxicillin for children 33 kg and under:

30 mg/kg 3 times per day for 21 days

–
Lyme disease affecting the cranial nerves or peripheral nervous system

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 under 50 kg:

80 mg/kg (up to 4 g) once per day for 21 days

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

–
Lyme disease affecting the central nervous system

Under 9

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 4 g) once per day for 21 days

–

–
Lyme disease with arthritis or acrodermatitis chronica atrophicans

9–12 years

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

Oral amoxicillin for children 33 kg and under:

30 mg/kg 3 times per day 28 days

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 28 days
Lyme disease with arthritis or acrodermatitis chronica atrophicans

Under 9

Oral amoxicillin for children, 33 kg and under:

30 mg/kg 3 times per day for 28 days

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 28 days

–
Lyme disease with Lyme carditis and haemodynamically stable

9–12 years

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 21 days

–
Lyme disease with Lyme carditis and haemodynamically stable

Under 9

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 21 days

–

–
Lyme disease with Lyme carditis and haemodynamically unstable

9–12 years

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 21 days

Oral doxycycline 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 (Use clinical judgement to determine doses of doxycycline for children under 12 years with severe infections)

In April 2018, this use of doxycycline was off-label in children under 12 years. See NICE's information on prescribing medicines

–
Lyme carditis and haemodynamically unstablef

Under 9

Intravenous ceftriaxone for children under 50 kg:

80 mg/kg (up to 2 g) once per day for 21 days

Notes:

Do not use azithromycin to treat people with cardiac abnormalities associated with Lyme disease because of its effect on QT interval.

Children weighing more than the amounts specified should be treated according to table 1.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on antibiotic treatment.

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

evidence review K: management of ocular symptoms.

Ongoing symptoms after a course of antibiotics

1.3.9

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 re‑infection may have occurred

  • if treatment may have failed

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

  • if symptoms may be related to organ damage caused by Lyme disease, for example, nerve palsy.

1.3.10

If the person's history suggests re‑infection, offer antibiotic treatment for Lyme disease according to their symptoms (see tables 1 and 2).

1.3.11

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.

1.3.13

Explain to people with ongoing symptoms following 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 to assess for active infection and an alternative diagnosis may explain their symptoms.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on ongoing symptoms after a course of antibiotics.

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

Non-antibiotic management of ongoing symptoms

1.3.14

Offer regular clinical review and reassessment to people with ongoing symptoms, including people who have no confirmed diagnosis.

1.3.15

Explore any ongoing symptoms with the person and offer additional treatment if needed following usual clinical practice.

1.3.17

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

  • encouraging and helping them to access additional services, including referring 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.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on non-antibiotic management of ongoing symptoms.

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

Management for women with Lyme disease during pregnancy and their babies

1.3.19

Tell women with Lyme disease during pregnancy that they are unlikely to pass the infection to their baby and emphasise the importance of completing the full course of antibiotic treatment.

1.3.20

Advise women who had Lyme disease during pregnancy to tell this to their healthcare professional if they have any concerns about their baby. In this situation, healthcare professionals should discuss the history with a paediatric infectious disease specialist and seek advice on what investigations to perform.

1.3.21

Start treatment for Lyme disease under specialist care for babies of women treated for Lyme disease during pregnancy if the baby has IgM antibodies specific for Lyme disease or there is any suspicion the baby may be infected.

For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on management for women with Lyme disease during pregnancy and their babies.

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

1.4 Information for people with Lyme disease

1.4.1

Explain to people diagnosed with Lyme disease that:

  • Lyme disease is a bacterial infection treated with antibiotics

  • most people recover completely

  • prompt antibiotic treatment reduces the risk of further symptoms developing and increases the chance of complete recovery

  • it may take time to get better, but their symptoms should continue to improve in the months after antibiotic treatment

  • they may need additional treatment for symptom relief.

1.4.2

Tell people who are starting antibiotics for Lyme disease that some people may have a Jarisch–Herxheimer reaction to treatment. Explain that:

  • this causes a worsening of symptoms early in treatment

  • it can happen when large numbers of bacteria in the body are killed

  • it does not happen to everyone treated for Lyme disease

  • they should contact their doctor and keep taking their antibiotics if their symptoms worsen.

1.4.3

Advise people with Lyme disease to talk to their doctor if their symptoms have not improved or if symptoms return after completing treatment.

1.4.4

Explain to people with Lyme disease that infection does not give them lifelong immunity and that it is possible for them to be re‑infected and develop Lyme disease again.

For a short explanation of why the committee made the recommendations, see the rationale and impact section on information.

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

Terms used in this guideline

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.

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.