Lyme disease is a bacterial infection that can be spread to humans by infected ticks. Early diagnosis and treatment can lead to a resolution for many patients. Late or missed diagnosis can result in persistent and debilitating symptoms.
Key points
- The erythema migrans rash is diagnostic of Lyme disease and there is no need to perform a blood test before starting treatment.
- Approximately 30% UK patients may have no rash and may not recall a tick bite.
- Do not rule out Lyme disease with negative test results – a high index of suspicion is necessary.
- Consider starting antibiotic therapy whilst waiting for blood test results.
- There is no test for cure and no test to monitor disease progression.
- If an ELISA test is carried out within 4 weeks of being bitten, repeat the test at the 4-6 week mark to allow antibodies to form.
- If Lyme disease is still suspected in people with a negative ELISA who have had symptoms for 12 weeks or more, perform an immunoblot.
- The NICE Lyme disease guideline allows for two 21 day courses of antibiotics if symptoms persist.
Why Lyme disease infections can be missed or under-treated
- The possibility of a Lyme disease infection not being considered.
- The erythema migrans (Lyme rash) not being present or recognised.
- Being prescribed an incorrect dose or duration of course of antibiotics and/or a second course not considered. e.g. Antibiotics for children are much higher doses than for other childhood infections.
- Relying on a positive blood test for diagnosis before treating with antibiotics or testing too early.
Ticks and Lyme disease
- Ticks have been found in every county in the UK and can be active all year round.
- Ticks can be found in woodland areas as well as in urban parks and gardens.
- Ticks can be tiny and the size of a poppy seed.
The erythema migrans rash
- Approximately 30% UK patients may have no rash and may not recall a tick bite.
- The rash can appear up to 3 months after being bitten by an infected tick, but usually appears within 1 to 4 weeks. It can last for several weeks.
- The rash can have a darker or lighter area in the centre and might gradually spread. Is not usually hot or itchy.
- The rash may be flat, or slightly raised, and look pink, red, or purple when it appears on white skin.
- It can be harder to see the rash on brown and black skin and it may look like a bruise.
Symptoms
- Symptoms can include flu-like symptoms, fever and sweats, malaise, migratory myalgia or arthralgia, neck pain, brain fog, fatigue and paresthesia.
- Early Lyme disease symptoms can include flu-like symptoms, fever and sweats, malaise, migratory myalgia or arthralgia, neck pain, brain fog, fatigue and paresthesia.
- Lyme disease may present with acute or chronic multi-systemic signs and symptoms, weeks, months or even years later, if not diagnosed early. For example: facial palsy, meningitis, dizziness, unexplained radiculopathy, encephalitis, neuropsychiatric presentations, inflammatory arthritis, neurological conditions, cardiac problems, ME/CFS, fibromyalgia, uveitis or keratitis, skin rashes
Testing
- The erythema migrans rash is diagnostic of Lyme disease and there is no need to perform a blood test before starting treatment.
- False negatives and false positive blood test results are possible. There is no test for cure and no test to monitor disease progression.
- If an ELISA test is carried out within 4 weeks of being bitten, repeat the test at the 4-6 week mark to allow antibodies to form.
- Use an immunoblot test for symptoms that persist beyond 12 weeks.
- Do not rule out Lyme disease with negative test results – a high index of suspicion is necessary.
- Consider starting antibiotic therapy whilst waiting for blood test results.
- The NICE Lyme disease guideline allows for two 21 day courses of antibiotics if symptoms persist.
Lyme Disease UK is a UK charity providing patient support and raising awareness of Lyme disease. We want to ensure that all patients seeking medical advice for a tick bite, erythema migrans (Lyme rash) or symptoms of Lyme disease receive the correct advice, timely diagnosis and treatment. One of our goals is to raise awareness of Lyme disease and early symptoms with primary care physicians to help improve long term outcomes for patients.
Visit Lyme Disease UK Clinicians Hub for links to:
- RCGP Lyme Disease Toolkit
- NICE Lyme Disease Treatment Guideline
- BMJ treatment choices for Lyme disease
- Slides and short animation to update you on current practice guidelines
- The RCGP/Lyme Disease Action eLearning Module (free to all health professionals)
Further Resources
There are genuine scientific uncertainties surrounding both diagnosis and treatment of Lyme disease. The NICE guideline committee noted the poor-quality evidence available on both diagnosis and treatment. Further research was recommended.
If you are interested in learning about research into Lyme disease and other tick-borne infections, find out more from: Liverpool School of Tropical Medicine and Johns Hopkins Lyme Research Centre.