Useful sources of information

Guidelines: Be aware that none of the existing guidelines incorporates all the published knowledge on Lyme disease and much of the science is still poorly understood.

A NICE Guideline was published in 2018. Note the highlighted points at the top of this diagnostic visual summary.

The Royal College of General Practitioners (RCGP), together with LDA, launched a Lyme Disease e-learning course in September 2014, updated 2018.

Quotes from GPs –

I have to admit to knowing very very little about this disease pre course, and found it highly informative. thank-you.

I thought that this was very interesting. We have had a couple of cases in our very urban practice recently and I knew very little about it- assuming that I would rarely see… So I am now in a much better position.

Excellent thorough and interesting with clear guidance on treatment and referral criteria.

This is a very good and helpful summary of Lyme Disease. It is especially good for GP practice and there are helpful photographs of EM.

The RCGP Spotlight Project has produced a Toolkit of information on Lyme disease.

Public Health England has resources and guidance on Lyme disease and also a tick awareness toolkit.

See also the About Lyme menu on our website for useful information, including genuine reasons why serology tests may be negative in some cases. There are articles about Lyme serology in our newsletters of  May 2015 (A better approach to serology) and January 2015 (negative Lyme disease serology).

If you have a question you can contact us via our medics support line. We can provide you with evidence based, referenced information on many aspects of Lyme disease.

Be aware in practice:

Occupationally acquired cases should be notified to the Health and Safety Executive (HSE), under the RIDDOR regulations. This also applies to self employed individuals who may need to have this drawn to their attention.

Jarisch-Herxheimer Reaction (JHR)

Patients should be warned they might experience a worsening of symptoms on starting treatment. CKS[2] states

“A Jarisch–Herxheimer reaction may cause an exacerbation of symptoms but does not usually warrant stopping treatment.”

Note that a European trial found that unlike syphilis, in which the JHR occurs in the first 24 hours of treatment, “We suggest that Jarisch–Herxheimer-like reactions may be prolonged and may occur late during treatment.” [5]

See also a useful paediatric case study with discussion about a severe JHR starting on day 7 of treatment with doxycycline for a late diagnosed Lyme arthritis. The patient subsequently had a course of IV ceftriaxone which cleared the inflammation.[10]

Psychiatric Manifestations

Doctors should be aware that patients can develop Lyme related mood disorders such as depression and anxiety, psychoses, disturbed behaviour and cognitive difficulties. For more detail see the page on Neuroborreliosis on the About Lyme section of this website.

Doctors should be alert to the real risk of suicide.

Lyme in Pregnancy

A study in Hungary [3] concluded that “an untreated maternal Borrelia burgdorferi s.l. infection may be associated with an adverse outcome, although bacterial invasion of the fetus cannot be proven.”

A 2018 systematic review [1] concluded  “There is some evidence to suggest that it is biologically plausible for B.burgdorferi to be vertically transmitted to the fetus, however these studies have been unable to define a characteristic pathological effect of B.burgdorferi infection in the fetus, thus there are significant knowledge gaps about the relationship of B.burgdorferi infection and adverse birth outcomes.” The authors recommend that “physicians continue to remain thorough in their diagnosis and treatment of LD in pregnant women and that new research address the knowledge gaps identified in this review.”

The NICE guideline has a section on management for women with Lyme disease during pregnancy and their babies.

Paediatric Lyme Disease

Although >50% tick bites on adults are below the waist, 60% of bites on children are above the waist [4]. Ticks can attach in the hairline and on the scalp of children and remain undetected for longer than on adults. Children may be less likely to pay attention to tick bites and erythema migrans rashes. A European study found that EM had been noticed in only 36% of children with Lyme neuroborreliosis. [7]

Facial palsy with headache and fever has been shown to predict early Lyme disease in children during peak Lyme disease season in endemic areas (May – Oct) [6].

A UK study [8] concluded

“In areas endemic with Lyme disease, Lyme disease should be considered as the likely cause of facial nerve palsy in children until proven otherwise. All children presenting with FNP to health care providers in these areas should have Lyme serology tested and empirical treatment for Lyme initiated pending the results of tests.”

See our discussion of this paper.

In children anxiety, emotional disorders and difficulties with attention and learning may develop if Lyme disease is undetected or untreated.

Persistent Symptoms

Many trials and case studies report a second course of treatment being required to clear symptoms. See reference [10] for an example and also NICE Guideline section 1.3.11 – recommendations for a second course of treatment.

Some people appear not to recover completely following antibiotic treatment. Until recently this has not been well documented but in a large prospective study in the Netherlands [9] it was reported that

“These findings suggest that Lyme borreliosis may induce persistent symptoms, albeit in a small proportion of patients.”  Also “The reason some people do not completely recover is not yet understood and the appropriate treatment for these symptoms is currently not known.”

Doctor patients

Lyme borreliosis: perspective of a scientist–patient. Dr Ron Hamlen  (Full story only available through NHS Athens or to The Lancet Infectious Diseases subscribers.)

My Years with Lyme Disease Dr Chris Wilson RN (full story only available through NHS Athens or to BMJ subscribers.)

Lyme neuroborreliosis. A letter in response to a BMJ article. Dr Caroline Rayment relates her journey as a patient.

References

1)  A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn. Waddell et al PLoS One. 2018;13(11):e0207067

2) NICE Clinical Knowledge Summaries CKS

3)  Maternal Lyme Borreliosis and pregnancy outcome Lakos & Solymosi 2010 Int J Infect Dis. 2010 Jun;14(6):e494-8

4)  Tick bite and Lyme borreliosis risk at a recreational site in England. Robertson et al 2000 Eur J Epidemiol. 2000;16(7): 647-652.

5) Duration of antibiotic treatment in disseminated Lyme borreliosis. Oksi et al 2007. European Journal of Clinical Microbiology and Infectious Diseases 2007, 26 (8) 571-81

6) Clinical predictors of Lyme disease among children with a peripheral facial palsy at an emergency department in a Lyme disease-endemic area. Nigrovic et al 2008 Pediatrics. 2008 Nov;122(5):e1080-5.

7) Occurrence of Erythema Migrans in Children with Lyme Neuroborreliosis and the Association with Clinical Characteristics and Outcome – a Prospective Cohort Study  Backman et al 2018 BMC Pediatrics 18 (1): 1–7. Backman

8)  High Frequency of Paediatric Facial Nerve Palsy Due to Lyme Disease in a Geographically Endemic Region. Munro, Alasdair P.S., et al. 2020. International Journal of Pediatric Otorhinolaryngology 132 (May): 109905.

9) Prevalence of Persistent Symptoms after Treatment for Lyme Borreliosis: A Prospective Observational Cohort Study. Ursinus et al. 2021. The Lancet Regional Health – Europe.

10) The Jarisch-Herxheimer Reaction Associated with Doxycycline in a Patient with Lyme Arthritis. Nykytyuk et al 2020.” Reumatologia 58 (5): 335–38.