Dr Caroline Rayment discusses how the new NICE guideline will help practitioners provide early and consistent treatment to patients with suspected Lyme disease

Dr Caroline Rayment

Figure 4: Fowchart on lyme disease laboratory investigations and diagnosis

Management and referral

If Lyme disease is suspected, GPs should refer all children under the age of 12 years unless they are being treated for a single erythema migrans lesion and have no other symptoms. It is also advisable to seek secondary care advice for patients who have had two separate courses of antibiotics and are still symptomatic, and for those whose clinical picture fits the diagnosis of Lyme disease but who test negative.5

It is sensible to review the diagnosis of Lyme disease in patients who do not seem to be responding to treatment.5

Be aware that some symptoms—especially neurological symptoms—may persist after successful treatment due to damage caused by the organism.

Table 1 shows antibiotic treatments recommended by NICE5 for adults and young people aged over 12 years. Table 2 shows antibiotic treatments recommended by NICE5 for children aged under of 12 years.5 This information is also available in the form of a useful algorithm. Doses and duration of antibiotic treatment have been chosen at the higher ranges of formulary doses and lengths of treatment to avoid the possibility of under-treatment. There was a lack of evidence to support extended courses of antibiotics for people with persisting symptoms.8

What next for Lyme disease patients?

Five comprehensive research recommendations are made by the committee of NG95 at the end of the guideline.5 At first glance these seem quite overwhelming but in the author’s opinion, they are a reflection of the lack of reproducible evidence that is available to guide clinicians. A Danish study published in May 2018 on the long-term outcomes for European Lyme neuroborreliosis offers reassurance to patients.9 GPs can assure patients with a confirmed microbiological diagnosis of neurological symptoms of Lyme disease that this will have no effect on their survival, wellbeing, or social parameters 10 years after diagnosis compared with a control population.2

Lyme disease has always been an illness that, in the author’s opinion, healthcare practitioners have been very cautious about diagnosing. It has not been very common in the UK and the controversy worldwide about best treatment methods has left patients feeling that they have not been listened to and have therefore had to seek alternative private, expensive, and poorly evidenced treatment. It is unhelpful that there is no test for active infection, which leads clinicians to doubt the diagnosis and in turn contributes to more uncertainty for the patient.

The main change that will happen as a result of NG95 is that there will be one clear pathway for suspected Lyme disease in England. It is hoped that the guideline will raise the awareness of GPs to the prevalence of Lyme disease throughout the UK, the range of symptoms that should cause suspicion, and the serious manifestations that should not be missed. The guideline committee chose to simplify the treatment algorithms so that there is less room for error, and the committee’s expert view was that the dose of some of the antibiotics should be increased in line with other infectious diseases of similar severity.

The NICE guideline was therefore timely and will hopefully spark further research into this complex illness. The fact that the RCGP has chosen Lyme disease as a spotlight project for 2018/19 can only advance the understanding of medical practitioners and the wider engagement of the public.

Dr Caroline Rayment

GP, Burley in Wharfedale

Member of the guideline development group for NG95

Key points

  • Lyme disease is a bacterial infection transmitted by the bite of an infected tick
  • Lyme disease can be contracted anywhere within the UK, although there are some areas of higher prevalence
  • It is important that ticks are removed promptly and correctly
  • Erythema migrans is pathognomonic of Lyme disease and requires no other additional testing
  • Lyme disease is a multisystem infection, which may present with focal or non-focal symptoms
  • A 3–4-week course of antibiotics at high dose is needed to treat the infection adequately:
    • a second course of antibiotics may be tried if there is no response to the first course
  • Some patients may have residual symptoms, which are due to damage and not due to active infection
  • There is no test for active infection or test of cure
  • New evidence suggests that 10 years post Lyme disease there is a good outcome for most patients.

Implementation actions for STPs and ICSs

written by Dr David Jenner, GP, Cullompton, Devon

The following implementation actions are designed to support STPs and ICSs with the challenges involved with implementing new guidance at a system level. Our aim is to help you consider how to deliver improvements to healthcare within the available resources. 

  • Discuss the issue of Lyme disease in local health and wellbeing boards and involve all agencies in raising awareness of the risks and the relevant roles each agency can play
  • Invite local departments of public health to lead local awareness campaigns about the risks of tick bites, safe removal of ticks, potential symptoms of Lyme disease, and when people should present to healthcare agencies.
  • Adopt and include NICE’s diagnosis and treatment algorithm in local formularies and guidelines, ensuring the correct diagnostic tests are available
  • Be aware of the remaining controversies and uncertainties around the management of Lyme disease and ensure a local specialist advice and referral service is available to manage cases where there is any doubt.

STP=sustainability and transformation partnership; ICS=integrated care system


  1. Public Health England. Common animal associated infections quarterly report (England and Wales): fourth quarter 2017. PHE, 2018. Available at: assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/680710/hpr0518_zoos.pdf
  2. Faust S, Barton S, Rayment C, O’Flynn N. Good outlook for patients with confirmed Lyme neuroborreliosis. BMJ 2018; 361: k2284.
  3. Wormser G, Dattwyler R, Shapiro E et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006; 43 (9): 1089–1134.
  4. Cameron D, Johnson L, Maloney E. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther 2014; 12 (9): 1103–1135.
  5. NICE. Lyme disease. NICE Guideline 95. NICE, 2018. Available at: www.nice.org.uk/ng95
  6. Lyme Disease Action. Tick removal. www.lymediseaseaction.org.uk/about-ticks/tick-removal/ (accessed 6 June 2018).
  7. Public Health England. Lyme disease: guidance, data and analysis—the characteristics, diagnosis, management, surveillance and epidemiology of Lyme disease or Lyme borreliosis. PHE, 2015. www.gov.uk/government/collections/lyme-disease-guidance-data-and-analysis (accessed 5 June 2018).
  8. Cruickshank M, O’Flynn N, Faust S on behalf of the Guideline Committee. Lyme disease: summary of NICE guidance. BMJ 2018; 361: k1261.
  9. Obel N, Dessau R, Krogfelt K et al. Long term survival, health, social functioning, and education in patients with European Lyme neuroborelliosis: nationwide population based cohort study. BMJ 2018; 361: k1998.