The 39 Lyme Unknowns

Following a search of systematic reviews it was confirmed that the following 39 questions need further research. These were included in the priority survey and are shown below with their original numbering. The order is not significant.

Treatment

• 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.
• 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?
• What are the outcomes of cases where long term treatment has been used?
• Should antibiotic treatment be continued until all symptoms have resolved?
• Do biofilms or different morphological forms (eg cyst form) of B burgdorferi exist in vivo and do they affect treatment regimen?
• Are there clinically relevant differences in antibiotic susceptibility of different genospecies and strains of B burgdorferi sl?
• Is treatment other than antibiotics effective in Lyme disease? (eg artesunate, DMARDs (methotrexate) or immunosuppressive drugs such as those used for rheumatoid arthritis)?
• Are there alternative medications or therapies that might be useful in Lyme disease? E.g. the Marshall 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?
• What is the best way to handle staying at, or returning to, work during and after treatment?
• When should prophylactic treatment be given, and what regimen should be used? (ie preventative treatment after a tick bite)
• If there is a further tick bite during treatment for diagnosed Lyme disease, how long should treatment be continued?
• If there is clinical suspicion (other than EM) should treatment be started without waiting for blood test results?
• Can response to treatment help to confirm the diagnosis?
• Are there long-term consequences if treatment is delayed?
• 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 symptoms relapse after a treatment course is finished?
• How common is relapse and treatment failure and is it related to disease stage, gender, co-infections or any other factor?
• What is the optimal course of action if treatment fails i.e. if symptoms continue after the agreed course(s) of antibiotics?
• Are corticosteroids and immunosuppressive drugs harmful in Lyme disease if used for symptomatic relief or because of a misdiagnosis?
• What is the effect of raised body temperature on Lyme disease? Either during a course of antibiotics or independently?
• Are there effective treatments for any of the psychiatric symptoms associated with Lyme disease?
• What is an effective treatment for the neuropathic pain experienced in Lyme disease?

Diagnosis

• 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?
• Could repeated tests be used to chart disease development and treatment success or failure?
• Are there inter-laboratory variations in the performance of the different tests for Lyme disease within the UK?
• How effective are the current UK tests in detecting infections due to the genospecies and strains of B burgdorferi sl in the UK?
• Can any of the tests identify LD in ‘the dormant cyst stage’?
• 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)
• Under what circumstances do antibiotics, steroids and immunosuppressive drugs affect blood test results?
• What key questions (clinical and epidemiological) should be considered to help make a diagnosis of Lyme disease in children and adults in the UK; would a weighting table be useful?
• Are continuing symptoms following conventional recommended treatment due to continued infection, or an immune response or other process?
• Does Post Lyme Syndrome exist, and what is its definition?
• What is the role of SPECT scans in the differential diagnosis?
• Are other types of test of use (CD 57 test, or testing for anti-GAD antibodies)
• Is a Quantum QXCI/SCIO machine of use for diagnosis of Lyme disease?
• Can Lyme disease be transmitted by vectors other than ticks?
• Can Lyme be transmitted via other means: person to person sexually, transplacentally or by breast feeding; through organ donation; through blood transfusion?
• Should family members be tested if they travelled with a confirmed case?

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