Patients and clinicians voted on their priorities, in the 39 questions, These were the top 26 that were put forward to the steering group.

  • 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.
  • 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 aid differentiation from ME, MS, RA etc; would a weighting table be useful? [Note: this includes the frequency of UK presentations such as EM etc]
  • Which single test and what combination of tests performs best in diagnosing or ruling out active Lyme disease, and should stage of the disease and patient age be taken into account when interpreting the tests?
  • How effective are the current UK tests in detecting infections due to the genospecies and strains of B burgdorferi sl in the UK?
  • What are the outcomes of cases where long term treatment has been used?
  • What is the optimal course of action if symptoms relapse after a treatment course is finished?
  • Should antibiotic treatment be continued until all symptoms have resolved?
  • What is the optimal course of action if symptoms persist after initial treatment (continue current treatment or change drug or dose)?
  • What is the optimal course of action if treatment fails i.e. if symptoms continue after the agreed course(s) of antibiotics?
  • Are continuing symptoms following conventional recommended treatment due to continued infection, or an immune response or other process?
  • How common is relapse and treatment failure and is it related to disease stage, gender, co-infections or any other factor?
  • Are there long-term consequences if treatment is delayed?
  • Can Lyme be transmitted via other means: person to person sexually, transplacentally or by breast feeding; through organ donation; through blood transfusion?
  • Do bioflims or different morphological forms (eg cyst form) of B burgdorferi exist in vivo and do they affect treatment regimen?
  • Is there a difference in efficacy between different initial durations of antibiotics a) where both are less than a month, e.g. 14 versus 28 days of treatment or similar; b) where one is much longer e.g. 14 days versus 100 days?
  • When should prophylactic treatment be given, and what regimen should be used? (ie preventative treatment after a tick bite)
  • If there is clinical suspicion (other than EM) should treatment be started without waiting for blood test results?
  • Are there clinically relevant differences in antibiotic susceptibility of different genospecies and strains of B burgdorferi sl?
  • Would it be clinically advantageous and economically feasible to use a direct microbiological test in cases where diagnosis is in doubt? (eg culture, microscopy, PCR etc)
  • Does Post Lyme Syndrome exist, and what is its definition?
  • Could repeated tests be used to chart disease development and treatment success or failure?
  • Can Lyme disease be transmitted by vectors other than ticks?
  • Is treatment other than antibiotics effective in Lyme disease? (eg artesunate, DMARDs (methotrexate) or immunosuppressive drugs such as those used for rheumatoid arthritis)?
  • If there is a further tick bite during treatment for diagnosed Lyme disease, how long should treatment be continued?
  • Are there alternative medications or therapies that might be useful in Lyme disease? E.g. the Marshal Protocol, supplements, herbal medications, acupuncture, QiCong, heavy metal chelation)?
  • Are there any particular dietary factors or exercise regimes or supportive treatments that would aid recovery from Lyme disease?