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. The 2 tier testing system is not as accurate as has been previously thought. There are several reasons why someone with Lyme disease might have a negative test. See the sections here on Diagnosis and on tests.
Lyme disease cannot survive a course of antibiotics. The bacteria that cause Lyme disease divide and multiply quite slowly and reside in human tissues with a poor blood supply (eg tendons). They appear to tolerate standard antibiotics by forming persister cells and have the ability to evade the immune system. These factors, among others, make it hard to eradicate. There is ample evidence in the scientific literature of viable bacteria isolated from treated patients[eg 2] and it is likely that in some cases continuing symptoms are due to still active infection. There is evidence that re-treatment works  in some cases.
Read about an example of a UK patient requiring repeat courses of antibiotics following relapses.
What you may like to give to your GP
Public Health England recommends LDA as a good source of information – see the PHE leaflet for the public.
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.
The RCGP Spotlight project has produced a Toolkit for Lyme disease which might be helpful for GPs.
Other useful resources
For UK sources of information on benefits and financial help see Patient.info
For those struggling to recover from their facial palsy : Facial Palsy UK
For carers and family friends of people struggling to cope: Carers UK
For accredited sources of information on other diseases and conditions see other members of The Information Standard.
- Feng J, Wang T, Shi W, Zhang S, Sullivan D, Auwaerter PG, et al. Identification of novel activity against Borrelia burgdorferi persisters using an FDA approved drug library. Emerg Microbes Infect. 2014 Jul 2;3(7):e49.
- 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.