Information and Guidelines for Diagnosis and Treatment
The following is a list of resources useful for Scottish GPs, pharmacists, nurses and other healthcare professionals.
Lyme disease, caused by the bacteria Borrelia burgdorferi, is a global infection that is on the rise and is the most common tick-borne disease in the northern hemisphere. Although early diagnosis and treatment can lead to resolution for many patients, delayed or missed diagnosis can result in persistent and debilitating symptoms.
Recognizing the often non-specific nature of Lyme disease symptoms can be challenging, emphasising the importance of raising awareness among primary care clinicians to facilitate early and effective treatment. Development of Lyme-aware practice teams, will ensure consistent advice and improved diagnostic skills Clinicians should be aware of the genuine scientific uncertainties and ongoing research regarding the diagnosis and treatment of this disease.
RCGP Lyme Disease Toolkit
This toolkit was developed by a team of primary and secondary care physicians. It is a user-friendly guide to Lyme disease for general practitioners and other healthcare professionals covering epidemiology, diagnosis, and treatment guidelines. Patients and the general public may also find it helpful.
The RCGP/Lyme Disease Action e-learning module
Freely available to all registered clinicians.
Both the RCGP toolkit and RCGP/LDA e learning module are endorsed by the Nice quality standard for Lyme disease.
NICE Guidelines for Lyme Disease
https://www.nice.org.uk/guidance/ng95
• Diagnose and treat Lyme disease without laboratory testing in people with erythema
migrans.
• Adults with an erythema migrans( EM) rash should be treated with oral doxycycline: 100
mg twice per day or 200 mg once per day for 21 days. More detail on treatment
protocols for other symptoms is given in the Management Recommendations section.
• Do not rule out the diagnosis if tests are negative but there is high clinical suspicion of
Lyme disease.
• Consider starting treatment with antibiotics while waiting for the results if there is a high
clinical suspicion.
• Consider a second course of antibiotics for people with ongoing symptoms if treatment
may have failed.
(NICE acknowledges the limited evidence base upon which these guidelines are based.)
NICE Quality Standard for Lyme disease
https://www.nice.org.uk/guidance/qs186
Clinicians should note the following:
Jarisch Herxheimer Reaction (JHR)
Patients should be warned they might experience a worsening of symptoms on starting treatment though this does not usually warrant stopping treatment.The reaction may start soon after starting antibiotics but can also occur slightly later and may last for a few hours or several days.
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. Doctors should be alert to the real risk of suicide.
Lyme in Pregnancy
The NICE guideline states :“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”. CDC in 2020 stated: 'Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes’.
* There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.
https://www.cdc.gov/lyme/resources/toolkit/factsheets/Pregnancy-and-Lyme-Disease-508.pdf
Paediatric Lyme Disease
Ticks can attach in the hairline and on the scalp of children and remain undetected for longer than on adults. 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). 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. Other symptoms in children include fatigue and anxiety. Emotional disorders and difficulties with attention and learning may develop if Lyme disease goes undetected or untreated.
Occupationally acquired Lyme disease
This includes employees and the self employed. Cases should be notified to the Health and Safety Executive (HSE), under the RIDDOR regulations.
Advice from The Medical Defence Union
An alleged failure to diagnose the disease is the most common reason for complaints and claims about Lyme disease reported to the MDU
Scottish Lyme Disease Resources
The Scottish Lyme Disease and Tick-borne Infections Reference Laboratory User Manual.
Health Protection Scotland general advice on Lyme disease, including surveillance data.
Health Protection Scotland printable information sheet and poster.
Community Pharmacy Scotland
Ticks and Lyme Disease – Raising Public Awareness and Acting Fast!
https://www.cps.scot/news/ticks-and-lyme-disease
UK Lyme disease resource
UK health Security Agency
https://www.gov.uk/government/collections/lyme-disease-guidance-data-and-analysis
Lyme Disease Incidence
LD is seen in every region of the UK. Infected ticks can be transported by migrating birds, so patients can be infected with LD wherever the habitat is suitable for ticks that carry Borrelia.
A BMJ paper by Cairns et al showed that the highest incidence of Lyme disease was in Scotland and the south of England. They estimated that the incidence of LD in the UK is about threefold higher than the official estimate of 2,000-3,000 cases per year.