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GPs advised not to rule out Lyme disease despite lack of tick bite

GPs should not rule out the possibility that a patient has Lyme disease if they present with symptoms but have no clear history of tick exposure, according to new draft NICE guidance.

GPs are advised to diagnose and treat patients for Lyme disease without doing further tests if they present with the characteristic circular rash, and to refer patients for further tests if their symptoms and history are not as clear cut.

The guideline, which is out for consultation with stakeholders and will be published in April 2018, will be the first on Lyme disease published by NICE.

It advises that Lyme disease should not be ruled out in patients with symptoms but no clear history of tick exposure, but also that doctors should be cautious about diagnosing the disease in patients without a supportive history, as they may be missing an alternative diagnosis.

The guideline recommends that patients with a circular red rash (erythema migrans), should be diagnosed and treated with antibiotics without further investigation. Patients with symptoms that could represent Lyme, such as flu-like symptoms, joint or muscle pain or cognitive impairment, but no rash should be referred for further laboratory tests to rule it out.

It highlights that some patients with Lyme disease may find it difficult to explain their symptoms due to cognitive impairment and so GPs need to take a thorough history to help identify the cause.

Saul Faust, professor of paediatric immunology and infectious diseases at the University of Southampton and chair of the guideline committee, said: ‘Lyme disease may be difficult to diagnose as people can have common and unspecific symptoms, like a headache or fever, and they may not notice or remember a tick bite.

‘Our draft guidance will give GPs and hospital doctors clear advice on how to diagnose if they think Lyme disease is a possibility.

‘We also recommend tests used for this illness meet certain laboratory criteria. This is to make sure a potential diagnosis is based on clinically relevant and robust test results.’

Guideline in full

Be aware that Lyme disease is transmitted through the bite of an infected tick and that most tick bites do not transmit the disease

Diagnose without doing further investigation in patients with erythema migrans, usually at the site of the bite

  • Treat first line with a course of doxycycline in patients aged 12 or over

Consider Lyme disease in patients presenting with symptoms such as headache, flu-like symptoms and joint pain but no rash

  • Refer patients for ELISA and immunoblot laboratory tests
  • Consider repeating the tests 4-6 weeks later if the ELISA is negative but symptoms are persisting
  • If symptoms persist, consider referring to an infectious diseases specialist

Be aware that patients may have symptoms of cognitive impairment and therefore find it difficult to explain their symptoms 

Ask patients presenting with symptoms suggestive of Lyme disease about how long they have had them and about their travel history

Don't rule out Lyme disease in patients with symptoms but no clear history of tick exposure

  • Be cautious about diagnosing Lyme disease as symptoms may be pointing to an alternative diagnosis

Don't diagnose Lyme in patients with a tick bite but no symptoms 

Source: NICE


Readers' comments (14)

  • Well that's spectacularly unhelpful advice. Why don't they develop a decent test and get back to us??

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  • I really like 'A virtual nobody's Froydian spell-checker : yes I have plenty of 'defiantly' Lyme diseased patients who are adamant their repeated negative tests are a sign of a specially virulent non-immunogenic form which happens to be resistant to Doxycyline too, and needs some highly expensive foreign test that this stupid useless GP keeps refusing them - but hey! now I should refer them for more testing - lucky infectious disease specialist (at least he is timetabled an hour per consultation - I am only timetabled 5 minutes even if it takes an hour to get rid of them)

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  • Sandra Pearson

    As a doctor and Medical Director of the national charity Lyme Disease Action, I am shocked by the tone and language used by some medical professionals on this public forum when commenting on patients and the draft NICE guidelines for Lyme disease. People who have read some of these comments such as "gaga" and "nutter" have expressed shock, anger and distress, as well as feelings of mistrust towards the medical profession as a whole.
    The GMC provides ethical guidance on doctors' use of social media: "The standards expected of doctors do not change because they are communicating through social media rather than face to face or through other traditional media."

    Having spoken with numerous GPs at medical conferences, I understand the significant challenges in diagnosis, testing and treatment of Lyme disease, when only 1 in 3 people notice a tick bite and not everyone presents with a classic EM rash. Symptoms may overlap with a range of other more common conditions and testing has inherent limitations:
    I would reassure any people reading this comment that the many GPs I have spoken to at such conferences share their concerns and remain powerful advocates for improving patient care.

    RCGP is a registered stakeholder for the Lyme disease guideline and GPs may communicate their concerns and comments ahead of the 06/11 deadline.

    The preliminary response of Lyme Disease Action is here:

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