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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

CRITICAL NEEDS AND GAPS IN UNDERSTANDING PREVENTION, AMELIORATION, AND RESOLUTION OF LYME AND OTHER TICK-BORNE DISEASES

The Short-Term and Long-Term Outcomes

WORKSHOP REPORT

Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

THE NATIONAL ACADEMIES PRESS
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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

This project was supported by Contract No. N01-OD-4-2139 between the National Academy of Sciences and the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

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Cover images courtesy of the Centers for Disease Control and Prevention’s Public Health Image Library.

IOM (Institute of Medicine). 2011. Critical needs and gaps in understanding prevention, amelioration, and resolution of Lyme and other tick-borne diseases: The short-term and long-term outcomes: Workshop report. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

“Knowing is not enough; we must apply.

Willing is not enough; we must do.”

—Goethe

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES


Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine


The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.


The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering.


The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.


The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.


www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

COMMITTEE ON LYME DISEASE AND OTHER TICK-BORNE DISEASES: THE STATE OF THE SCIENCE

LONNIE J. KING, D.V.M. (Chair), Dean,

College of Veterinary Medicine, The Ohio State University, Columbus, OH

NAOMI L. GERBER, M.D., Director,

Center for the Study of Chronic Illness & Disability, George Mason University, Fairfax, VA

STEPHEN M. OSTROFF, M.D., Director,

Bureau of Epidemiology, Pennsylvania Department of Health, Harrisburg, PA

GUY H. PALMER, D.V.M., Ph.D., Regents Professor of Pathology and Infectious Diseases; The Creighton Chair and Director of the School for Global Animal Health,

Washington State University, Pullman, WA

GORDON E. SCHUTZE, M.D., Professor and Vice-Chairman for Educational Affairs,

Department of Pediatrics,

Vice President,

Baylor International Pediatric AIDS Initiative, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX

DAVID H. WALKER, M.D., The Carmage and Martha Walls Distinguished University Chair in Tropical Diseases, Professor and Chair,

Department of Pathology,

Executive Director,

Center for Biodefense and Emerging Infectious Disease, University of Texas Medical Branch-Galveston, Galveston, TX

Study Staff

CHRISTINE M. COUSSENS, Ph.D., Senior Program Officer and Study Director,

Board on Population Health and Public Health Practice

CAROL MASON SPICER, Ph.D., Associate Program Officer,

Board on Population Health and Public Health Practice (from December 2010)

RITA DENG, M.H.S., Associate Program Officer,

Board on Population Health and Public Health Practice (until October 2010)

TREVONNE WALFORD, B.S., Research Assistant,

Board on Population Health and Public Health Practice

PAM LIGHTER, B.S., Senior Program Assistant,

Board on Population Health and Public Health Practice (until April 2010)

HOPE HARE, M.A., Adminstrative Assistant,

Board on Population Health and Public Health Practice

ANDREA BANKOSKI, M.P.H., Consultant

SANDRA HACKMAN, B.A., Consultant

ROSE MARIE MARTINEZ, Sc.D., Director,

Board on Population Health and Public Health Practice

PATRICK KELLEY, M.D., Director,

Board on Global Health

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

Reviewers

This report has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this report:

Abdu F. Azad, Pharm.D., Ph.D., M.P.H., Professor of Microbiology and Immunology, University of Maryland

Stephen W. Barthold, D.V.M., Ph.D., Professor of Pathology and Director of the Center of Comparative Medicine, University of California at Davis

Linda Lobes, Director, Michigan Lyme Disease Association

Robert Smith, M.D., M.P.H., Maine Medical Center Research Institute

Ellen Stromdahl, Ph.D., Entomologist, US Army Public Health Command

Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the

Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

report before its release. The review of this report was overseen by Linda McCauley, Ph.D., F.A.A.N., R.N., Dean, Nell Hodgson Woodruff School of Nursing, Emory University. Appointed by the National Research Council, she was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×
Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

Preface: A Walk in the Woods

Lyme disease and many other tick-borne diseases (TBDs) are zoonotic diseases in which a pathogen moves from an animal host to a person through ticks. Scientists now understand the complexities associated with such disease transmissions, including the role of ecosystems as it relates to the life cycle of the pathogen.

A walk in the woods in certain geographic areas of the United States constitutes a risk factor for exposure to Lyme disease or other tick-borne illness. The same phrase, a “walk in the woods,” is also a metaphor for a process of conflict resolution. A “walk in the woods” is a model named for the classic 1982 saga of two Cold War nuclear arms reduction negotiators from the United States and Russia who broke an impasse in their talks by accompanying each other for a walk in the woods around Geneva, Switzerland, leading them to new insights and compromise, and ultimately a newly crafted agreement based on shared interests. This saga was later immortalized in a Broadway play symbolizing the advantage of interpersonal bargaining and interest-based negotiation.

It was obvious to participants at the workshop that a significant impasse has developed in the world of Lyme disease. There are conflicts within and among the science; policy; politics; medicine; and professional, public, and patient views pertaining to the subject, which have created significant misunderstandings, strong emotions, mistrust, and a game of blaming others who are not aligned with one’s views. Lines in the sand have been drawn, sides have been taken, and frustration prevails. The “walk in the woods” process of conflict resolution or a similar process seems necessary

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

for creating a new environment of trust and a better environment for more constructive dialogue to help focus research needs and achieve better outcomes. Such a process does not imply a compromise of the science but rather is needed to shift to a more positive and productive environment to optimize critical research and promote new collaborations.

Pamela Weintraub spoke eloquently about her personal experience and her family’s challenges with Lyme disease. Ms. Weintraub also made the point that the impasses and mistrust that exist have been instrumental in impeding progress toward developing solutions by creating an environment that is unproductive and even accusatory. Thus, a “walk in the woods” seems to be in order not only in considering factors in disease transmission but also as a process by which to find common ground, align interests, and develop a national strategy to address the complex and serious issues of TBD, including Lyme disease.

The committee believes that the project will provide a snapshot of the state of the science for TBDs, but it recognizes that not all topics could be covered in as much depth during a 2-day workshop as would be satisfying to the committee or the scientific community. Furthermore, the committee was cognizant of the societal issues that could affect the scientific agenda, but we did not allow the controversy to affect the scientific discussion. During the process, the committee also noted a lack of precision in describing research. In the report, the committee has not attempted to impose uniform terminology or definitions, opting to retain those employed by the individual speakers. The committee realizes that the lack of precise, uniform terminology is hampering the reporting and the discussions of stages of Lyme disease and other tick-borne diseases. Although the committee was not charged to produce recommendations, we hope that this body of work will result in further discussions of research gaps, opportunities, and priorities.

Many individuals and organizations contributed to this report. The committee thanks the authors of the commissioned papers, who worked diligently over the summer and the early fall to produce the extensive background that contributed to discussions at the workshop. The committee also thanks the presenters at the workshop, the members of the research community, and the public who shared their perspectives before and during the meeting, as well as the many individuals who participated in other public forums, on phone calls, and by e-mail. We understand and appreciate the negative impact that some of these diseases have on the quality of peoples’ lives. The convergence of science with real-life situations has highlighted both the need for more scientific knowledge and the serious societal issues and challenges that need to be addressed through scientific advancements.

The committee also extends its thanks to Sandra Hackman for providing preliminary drafts of some of the presentations; to Trevonne Walford for ensuring that the meetings and listening sessions ran smoothly and

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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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providing research and writing support; to Pam Lighter for assisting with the committee formation and background information; to Rita Deng for collecting initial data on the federal programs; to Andrea Bankoski for analyzing the federal program data; and to Carol Mason Spicer for drafting sections of the report and helping to provide critical comments. Hope Hare was instrumental in preparing the document for review and publication. We also thank Christine M. Coussens, who was the study director for the project. Together with Rose Marie Martinez, the board director, Christine helped the committee navigate the sociobiology issues. Although this was a challenging assignment, the committee welcomed the opportunity to help improve understanding of this group of diseases and, more importantly, to improve the lives of those who have been profoundly impacted by them.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

Acronyms

ACA Acrodermatitis chronica atrophicans

ADNI Alzheimer’s Disease Neuro-Imaging Initiative

AHSV African horse sickness virus

ALS Amyotrophic lateral sclerosis

ANA Antinuclear antibodies

APC Antigen-presenting cell

Arp Arthritis-related protein

CALDA California Lyme Disease Association

CBC Complete blood count

CCHF Crimean-Congo hemorrhagic fever

CCHFV Crimean-Congo hemorrhagic fever virus

CDC Centers for Disease Control and Prevention

CF Complement fixation

CFS Chronic fatigue syndrome

CME Canine monocytic ehrlichosis

CRASP Complement regulator-acquiring surface protein

CRF Case report form

CSF Cerebrospinal fluid

CSTE Council of State and Territorial Epidemiologists

DbhA DNA-binding protein HU-alpha

Dbp Decorin-binding protein

DC Dense-cored cell

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

DFA Direct fluorescent antibody

DGGE Denaturing gradient gel electrophoresis

DNA Deoxyribonucleic acid

ECCMID European Conference on Clinical Microbiology and Infectious Diseases

ECDC European Centre for Disease Control

EEE Ehrlichia ewingii ehrlichiosis

EIA Enzyme immunoassay

ELISA Enzyme-linked immunosorbent assay

EM Erythema migrans

ESCMID European Society of Clinical Microbiology and Infectious Diseases

EST Expressed sequence tag

EUCALB European Union Concerted Action on Lyme Borreliosis

FDA Food and Drug Administration

FISH Fluorescent in situ hybridization

GIS Geographic Information Systems

HA Human anaplasmosis

HBV Hepatitis B virus

HCV Hepatitis C virus

HE Human granulocytic ehrlichiosis

HEE Human ehrlichosis ewingii

HGA Human granulocytic anaplasmosis

hgt Horizontal gene transfer

HIV Human immunodeficiency virus

HME Human monocytic ehrlichiosis

HPA Hypothalamic–pituitary–adrenal

Hsps Heat-shock protein genes

IDSA Infectious Diseases Society of America

IFA Immunofluorescence assay

IFAT Indirect immunofluorescence

IFN Interferon

IFN- Interferon gamma

IgG Immunoglobulin G

IgM Immunoglobulin M

IHA Indirect hemagglutination

Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

IL Interleukin

ILADS International Lyme and Associated Diseases Society

IOE Ixodes ovatus Ehrlichia

IOM Institute of Medicine

KFD Kyasanur forest disease

LA Latex agglutination

LD Lyme disease

LFA-1 Lymphocyte function associated antigen

LPS Lipopolysaccharide

LTT Lymphocyte transformation

MA Microagglutination

MHC Major histocompatibility complex

MLST Multilocus sequence typing

MRI Magnetic resonance imaging

MSF Mediterranean spotted fever

MSP Major surface protein

NatCapLyme National Capital Lyme and Tick-borne Disease Association

NDVI Normalized difference vegetation index

NEDSS National Electronic Disease Surveillance System

NETSS National Electronic Telecommunications System for Surveillance

NIAID National Institute of Allergy and Infectious Diseases

NIH National Institutes of Health

NIP Nymphal infection prevalence

NK Natural killer

NKT Natural killer T

NNDSS National Notifiable Disease Surveillance System

NSAIDs Non-steroidal anti-inflammatory drugs

OMP Outer membrane protein

Osp Outer surface protein

PCR Polymerase chain reaction

PFGE Pulsed-field gel electrophoresis

PLS Post-Lyme syndrome

POTS Postural orthostatic tachycardia syndrome

RC Reticulate cell

RELU Rural Economy and Land Use

Page xviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
×

RMSF Rocky Mountain spotted fever

Sca Stem cell antigen

SCID Severe combined immunodeficiency

SFG Spotted fever group

SNP Single-nucleotide polymorphism

STARI Southern tick-associated rash illness

TBD Tick-borne diseases

TBE Tick-borne encephalitis

TFSS, T4SS Type IV secretion system

TG Typhus group

TIBOLA Tick-borne lymphdenopathy

TLR Toll-like receptor

T-RFLP Terminal restriction fragment length polymorphisms

TRP Tandem repeat protein

TRs Tandemly repeated sequences

VBD Vector-borne disease

VMP Variable membrane protein

WHO World Health Organization

WTD Whitetail deer

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. Washington, DC: The National Academies Press. doi: 10.17226/13134.
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A single tick bite can have debilitating consequences. Lyme disease is the most common disease carried by ticks in the United States, and the number of those afflicted is growing steadily. If left untreated, the diseases carried by ticks--known as tick-borne diseases--can cause severe pain, fatigue, neurological problems, and other serious health problems. The Institute of Medicine held a workshop October 11-12, 2010, to examine the state of the science in Lyme disease and other tick-borne diseases.

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