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 NICE Clinical Knowledge Summaries and you can refer your GP to this. Be aware that it only deals with early Lyme disease without complications; for all else it suggests referral to an expert. There is a lot that is uncertain in the diagnosis and treatment of Lyme disease. See the 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. Public Health England (PHE) has recorded cases across the country and states that any area that harbours hard bodied ticks may have the potential for Lyme Borreliosis transmission.

Ticks are not present in your area. Ticks are present in suitable habitat across the UK. The PHE tick surveillance scheme is building up data on tick distribution in the UK, although not all the UK has yet been surveyed.

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 tolerate standard antibiotics by forming persister cells[1] 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 [3]

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 Suggested Referral Pathway in the section below.
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 in conjunction with LDA.

Summary information for GPs.

GPs can be referred to a Suggested Referral Pathway for GPs produced by PHE. This states amongst other points that

  • Lyme disease is endemic throughout the UK;
  • absence of a rash or failure to recollect a tick bite does not exclude the diagnosis;
  • the rash should be treated without waiting for a blood test, which may be negative at this stage and the antibody response (which is what the test measures) fluctuates in early disease;
  • early treatment is important to avoid late complications
  • relapse has been documented.
Support for GPs

LDA offers an email support service for health professionals. You can print a flyer describing this service and give it to your GP, or any health professional involved with your care. Although our Medical Director cannot make direct clinical recommendations for individual patients, she can answer a GP’s questions with evidence based information. Often the opportunity to talk about specific points with another doctor helps to clarify issues.

Other useful resources

For UK sources of information on benefits and financial help see Patient.info

For people who live with persistent pain: The Pain Toolkit and a booklet Managing Chronic Pain from Healthcare Improvement Scotland

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.

References

  1. 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.
  2. 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.
  3. 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.