- There is a lot of controversy about Lyme disease so be careful about what you read, particularly on social media when you don’t know the source.
- There is a lot that is genuinely not understood and research is badly needed, especially on what causes continuing symptoms after treatment.
- Lyme disease has not been in the UK for long enough for all doctors to have experience, so they may also working in the dark.
If you have, or think you may have, contracted Lyme disease see our Self help page, and consult your GP in the first instance. He or she may know little about the disease and so you need to be prepared with information. Our Frequently Asked Questions page will give you a summary of many of the key points of Lyme disease.
In the UK, the most helpful official web site for GPs is the NICE Guideline and you can refer your GP to this. There is an interactive flowchart dealing with
- general awareness of ticks and Lyme disease
- diagnosis – when to treat without testing, what symptoms to be aware of and what tests are useful
- management – antibiotic treatment and how to assess ongoing symptoms
There is a lot that is uncertain in the diagnosis and treatment of Lyme disease. See our research page.
What you may be told
The most frequent misconceptions about the disease are given below, together with official sources holding the correct information.
Lyme disease is not present in the UK/your area. The NICE Guideline states that “infected ticks are found throughout the UK and Ireland.”
A negative test result means you cannot have Lyme disease. There are several reasons why someone with Lyme disease might have a negative test. See the sections here on Diagnosis and on tests. Section 1.2.12 of the NICE Guideline states “Do not rule out diagnosis if tests are negative but there is high clinical suspicion of Lyme disease”.
Lyme disease cannot survive a course of antibiotics. The bacteria that cause Lyme disease divide and multiply quite slowly and may be present in parts of the body that antibiotics do not easily reach (eg tendons). There is evidence in the scientific literature of viable bacteria isolated from treated patients [eg 1] and it is possible that in some cases continuing symptoms are due to still active infection. There is evidence that re-treatment works  in some cases. Unfortunately there is no routine test that can show what is happening. Continuing symptoms following treatment are now acknowledged  and research into what causes this has been called for.
Read about an example of a UK patient requiring repeat courses of antibiotics following relapses.
Social media rumours! Beware of what you read about Lyme disease. Have a look at our Reality Check page.
What you may like to give to your GP
The UK Health Security Agency recommends LDA as a good source of information – see the UK HSA information on Lyme disease.
On-line training course: we have produced a flyer giving details of an on-line training course developed by the Royal College of General Practitioners (RCGP) in conjunction with LDA.
Other useful resources
For accredited sources of information on other diseases and conditions see other members of The PIF Tick
- Preac-Mursic V, Wilske B, Gross B, et al. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection 1989; 17: 355–359.
- Dillon R, O’Connell S, Wright S. Lyme disease in the U.K.: clinical and laboratory features and response to treatment. Clin Med 2010; 10: 454–7.
- Ursinus, Jeanine, et al. Prevalence of Persistent Symptoms after Treatment for Lyme Borreliosis: A Prospective Observational Cohort Study. The Lancet Regional Health – Europe (2021).