Lyme disease toolkit

  • There are significant uncertainties surrounding the epidemiology of Lyme disease in the UK, and its diagnosis and treatment.
  • There has been a general lack of funding for Lyme disease research in Europe and the USA compared to other infectious diseases. The NICE guideline process found that very few published studies on Lyme disease met criteria for inclusion in the guideline, and most which were included were of low and very low quality.
  • Research into Lyme disease is challenging. Lack of consistent case definitions and gold standard diagnostic tests, limited outcome measures and difficulty studying the disease process in humans are factors. Division of expert opinion leading to controversy rather than debate has hampered progress.
  • The top 10 uncertainties about diagnosis and treatment of Lyme disease in the UK, were published in 2012 via a James Lind Alliance Priority Setting Partnership commissioned by Lyme Disease Action.
The NICE Clinical Guideline for Lyme disease (NICE NG95) noted that there were still a number of scientific uncertainties:
  • The nature of persistent symptoms following treatment, and whether this may be due to persistent infection, post-infectious immune dysfunction or tissue damage.
  • A better understanding of the human immune response to Borrelia in early and late-stage infections, including variability between individuals.
  • The potential risk of other means of Lyme disease transmission such as congenital, sexual, via blood transfusion or organ donation.
Current scientific research is seeking to explore core issues such as:
  • Whether the bacteria may survive antibiotic treatment and cause persistent infection.
  • How the bacteria interact with the host immune system to survive immune clearance.
  • The production of a safe and effective vaccine for Lyme disease.

A 2021 review paper, co-authored by a members of the research community provides ‘a detailed summary of progress over the past 5 years in understanding of Lyme and tick-borne diseases in the United States and highlights remaining challenges.’