Original ResearchLyme disease and post-treatment Lyme disease syndrome: the neglected disease in our own backyard
Introduction
Lyme disease is a worldwide emerging infectious disease with hundreds of thousands of new cases each year in the United States1 and across temperate regions of Eurasia.2 Lyme disease is the most common vector-borne disease in the US and the second most commonly reported infectious disease in the North East US, with over 300,000 new cases estimated by the CDC each year.1 With proper diagnosis and treatment, the majority of acute cases resolve; 15–20% of treated patients report persistent symptoms of fatigue, musculoskeletal pain and cognitive complaints after treatment.3 However, there is a subset of individuals who experience persistent symptoms for six months or longer; this is termed post-treatment Lyme disease syndrome (PTLDS).4, 5, 6 PTLDS is most often referred to as chronic Lyme disease by the public7 and remains a significant problem in those with delayed diagnosis, those who receive non-ideal initial treatment, and those with initial neurologic Lyme disease.8, 9 The aetiology of PTLDS is not yet clear and little is understood about the true number of cases or the health care burden of this illness.10
Despite the recognition of Lyme disease in Connecticut over three decades ago, the debate over PTLDS continues, with 48% of physicians surveyed in Connecticut remaining undecided about its existence.11 In contrast, in a survey of non-physician residents of New England, 67% responded that they knew someone who still suffered from Lyme disease symptoms after treatment, and 80% of those surveyed believed that Borellia burgdorferi, the bacteria causing Lyme disease, can persist in the body after antibiotic treatment.12 This discrepancy between physicians and the public may result from several factors including differences in perspectives of individuals vs healthcare providers and scientific unknowns. Even regarding general principles of prevention, there is evidence of a lack of basic knowledge in the general public.13
Schools of Public Health (SPHs) have traditionally played the central role in research, advocacy, and education related to vector-borne infections such as Lyme disease. A goal of SPHs is to drive public policy and to catalyse health initiatives and knowledge campaigns. SPH faculties are best positioned to bridge the large gaps in opinions and differing perspectives of patients and the medical community. Hence, it is important that public health personnel have knowledge of Lyme disease and PTLDS. However, a search of the literature did not reveal any public health studies in the last decade investigating PTLDS. It is not clear why this common illness has received so little attention. To the authors' knowledge, no prior surveys have assessed the knowledge base about Lyme disease and PTLDS among this cohort. In order to better understand the potential reasons for this lack of attention, the faculty of 50 accredited SPHs was surveyed. The authors hypothesize (1) that SPH faculties would report little experience teaching and researching Lyme disease and PTLDS and (2) that their personal experience, more so than self-assessed knowledge of Lyme disease, would be related to their certainty in opinions expressed regarding Lyme disease and PTLDS.
Section snippets
Instrument development
A literature review was performed to identify previous studies examining the knowledge, attitudes, behaviours, and treatments relating to acute and chronic Lyme disease among physicians and the public.11, 12, 13, 14, 15 No prior surveys were identified that focused on PTLDS specifically or that examined the public health faculty and their perspectives. SPH faculty members were specifically chosen to be addressed because of their unique perspective and potential experience with Lyme disease and
Results
The survey was transmitted to a total of 9468 unique email addresses at 50 schools (30% in Lyme endemic states, 70% in non-endemic states). Five hundred and six error messages were received in return, suggesting the actual population reached was 8962 faculty members (Fig. 1). Of the 8962 faculty members with active emails, 1297 participants took the survey, resulting in a 15% response rate.
Sample descriptive data is captured in Table 1. The majority of respondents are in the Epidemiology
Discussion
Post-treatment Lyme disease syndrome (PTLDS) is emerging as a well-recognized set of persistent symptoms that may follow the antibiotic treatment of Lyme disease and which may have a measurable immune pathophysiology.6, 16, 17, 18 There is a wide divergence in opinion between physicians and the public regarding Lyme disease and its relationship to PTLDS.11, 12, 13, 15 In this survey, the authors chose to focus on the non-treatment, public health aspects of the disease, which is the unique
Ethical approval
Ethical approval was obtained from The Johns Hopkins School of Medicine Institutional Review Board #NA_00071911.
Funding
Funding for this study was generously provided by the Lyme Disease Research Foundation, Inc.
Competing interests
None declared.
References (33)
- et al.
Lyme borreliosis
Lancet
(2012) Chronic Lyme disease: a review
Infect Dis Clin North Am
(2008)- et al.
Development of a foundation for a case definition of post-treatment Lyme disease syndrome
Int J Infect Dis
(2013) - et al.
Psychiatric comorbidity and other psychological factors in patients with “Chronic Lyme disease”
Am J Med
(2009) Summary of notifiable diseases: United States, 2009
Morb Mortal Wkly Rep
(2001)- et al.
Duration of antibiotic therapy for early Lyme disease. A randomized, double-blind, placebo-controlled trial
Ann Intern Med
(2003) - et al.
Lyme disease: an infectious and postinfectious syndrome
J Rhematol
(1994) - et al.
Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?
Qual Life Res
(2013) - et al.
The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the infectious diseases society of America
Clin Infect Dis
(2006) - et al.
The Lyme disease chronicles, continued. Chronic Lyme disease: in defense of the patient enterprise
FASEB J
(2010)
The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study
Ann Intern Med
Evaluation of study patients with Lyme disease, 10–20-year follow-up
J Infect Dis
Chronic lyme disease: a survey of connecticut primary care physicians
J Pediatr
Long-term Lyme disease antibiotic therapy beliefs among New England residents
Vector Borne Zoonotic Dis
Knowledge, attitudes, and behaviors regarding Lyme disease prevention among Connecticut residents, 1999–2004
Vector Borne Zoonotic Dis
Lyme disease knowledge, beliefs, and practices of New Hampshire primary care physicians
J Am Board Fam Pract
Cited by (13)
Lyme Disease
2018, Integrative Medicine: Fourth EditionModelling spatiotemporal patterns of lyme disease emergence in Québec
2021, International Journal of Environmental Research and Public HealthLymelight: forecasting Lyme disease risk using web search data
2020, npj Digital MedicinePost-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
2020, Frontiers in MedicineLyme disease in humans
2020, Current Issues in Molecular Biology