Lyme disease

About this PSP

Lyme Disease is an infectious disease caused by the bite of an infected tick. The charity Lyme Disease Action initiated this PSP. During the survey in 2011, 967 questions were submitted by 253 patients, carers and clinicians.

The Lyme Disease PSP Top 10 was published in December 2012.


PSP website
Impact after the Top 10

Key documents

Lyme-Disease-PSP-spreadsheet-of-data.pdf

Top 10 priorities

  1. How effective are the current UK tests in detecting infections due to the genospecies and strains of B burgdorferi sl in the UK and which single test and what combination of tests performs best in diagnosing or ruling out active Lyme disease. Should stage of the disease and patient age be taken into account when interpreting these tests?
  2. What key questions (clinical and epidemiological) should be considered to help make a diagnosis of Lyme disease in children and adults in the UK and would a weighting table be useful?
  3. What is the best treatment for children and adults presenting with a) early Lyme disease without neurological involvement and not including erythema migrans and b) late Lyme disease of any manifestation? To include consideration of drug(s), dose, duration.
  4. What is the optimal course of action if symptoms relapse after a treatment course is finished?
  5. What is the optimal course of action if symptoms persist after initial treatment: should antibiotic treatment be continued until all symptoms have resolved or should a different dose or different antibiotic be used and what is the course of action if treatment appears to fail completely?
  6. What are the outcomes of cases where long term treatment has been used?
  7. How common is relapse and treatment failure and is it related to disease stage, gender, co-infections or any other factor?
  8. Are there long-term consequences if treatment is delayed?
  9. Are continuing symptoms following conventional recommended treatment due to continued infection, or an immune response or other process?
  10. Can Lyme be transmitted via other means: person to person sexually, transplacentally or by breast feeding; through organ donation; through blood transfusion?

Document downloads

To see more about the uncertainties identified for Lyme Disease see the document below

Lyme-Disease-PSP-spreadsheet-of-data.pdf