Lyme disease makes hundreds of thousands of people sick every year. It is the most common tick-borne infection in the United States and one of the fastest growing infectious diseases. As the Lyme disease epidemic continues to spread across the nation, the number of cases is increasing, and many productive, highly functioning individuals are disabled. The impact on quality of life is significant and costs the medical system over a billion dollars per year.
Problems with Diagnosis and Treatment
- Some people miss the chance to diagnose the characteristic rash of Lyme disease and do not get treated for the disease at its earliest stage: either they don’t notice the rash or don’t go to their doctor, or the doctor doesn’t recognize the diagnostic Lyme rash.
- Some people infected by Lyme disease never have early symptoms or they may mistake the fever and aches for a summer virus.
- Lyme can be hard to diagnose because many of its symptoms are non-specific and occur in many other diseases.
- Lyme disease can infect several parts of the body, such as the joints and nerves, producing different symptoms at different times.
- There is currently no vaccine to prevent Lyme disease.
Without treatment, Lyme disease can become more and more debilitating.
There is an urgent need for research into the complex problem of chronic Lyme disease. Physicians need new tools to identify and treat patients who have persistent symptoms even after antibiotic therapy.
Better diagnostic tests and treatments can only be developed through research and expanded knowledge.
The Need for Research
Lyme disease can permanently change a person’s health. Currently, doctors lack the clinical tools to deal with the epidemic of Lyme disease and are searching for answers to help their patients.
- Diagnostic tests cannot yet accurately identify the earliest stage of Lyme disease when making the diagnosis is crucial. Because of this as well as the inconsistent ability to identify the hallmark rash, early Lyme disease is difficult to diagnose in a community practice setting.
- No objective test to confirm cure and eradication of infection is available.
- Treatment options for patients with persistent symptoms after standard therapy have not been successfully tested or approved by the FDA.
- The lack of research into the cause of persistent symptoms has severely limited the ability of physicians to treat and restore health to Lyme sufferers.
- There is an urgent need for research leading to clinical tools that can improve the care of patients with Lyme disease.
The Johns Hopkins Lyme Disease Clinical Research Center is a national leader in the search for solutions to the Lyme disease epidemic. Our mission is to promote research leading to the improved understanding of Lyme disease and its varied manifestations. At our center, we focus on translating research into clinical practice and we strive for a future where accurate diagnosis and effective treatment will bring better outcomes and new hope to Lyme disease patients and their families.
Our mission is to develop a translational research program that bridges basic science investigation to the clinical aspects of Lyme disease-related illness.
The Center focuses on the long recognized and newly defined group of individuals with post-treatment Lyme Disease syndrome. Our research aims to better understand the role of inflammation and immune dysfunction and its relationship to tick-borne infection both before and after initial antibiotic treatment. The goal is to clearly define and understand the cause of disabling symptoms these patients suffer and improve their diagnosis, treatment, and health outcomes.
The goal of our research is to discover an improved blood test that will allow for a more accurate diagnosis of Lyme Disease. These newly discovered tests will predict progression or relapse of the disease and allow us to test patients to see if they are cured. They will also allow us to develop new drug treatments for Lyme Disease.
Our long term goal is to develop interdisciplinary models for understanding the social, psychological, and biological aspects of all stages of Lyme Disease and tick-borne illnesses.
We have 15 manuscripts published in peer-reviewed journals across a range of disciplines, including infectious diseases, rheumatology, dermatology, sex and gender-based medicine, public health, and quality of life research.
- Development of a Multiantigen Panel for Improved Detection of Borrelia burgdorferi Infection in Early Lyme Disease. Lauren J. Lahey, Michael W. Panas, Rong Mao, Michelle Delanoy, John J. Flanagan, Steven R. Binder, Alison W. Rebman, Jose G. Montoya, Mark J. Soloski, Allen C. Steere, Raymond J. Dattwyler, Paul M. Arnaboldi, John N. Aucott, William H. Robinson. Journal of Clinical Microbiology. Volume 53, Issue 12, December 2015. The article shows that a newly developed 10-antigen panel can improve sensitivity of blood testing in early Lyme disease. http://www.ncbi.nlm.nih.gov/pubmed/26447113
- Living in Limbo: Contested Narratives of Patients with Chronic Symptoms Following Lyme Disease. Alison W. Rebman, John N. Aucott, Eric R. Weinstein, Kathleen T. Bechtold, Katherine C. Smith, Lori Leonard. Qualitative Health Research. December 1, 2015. Similar to other contested or medically unexplained syndromes, semi-structured interviews suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness. http://www.ncbi.nlm.nih.gov/pubmed/26631681
- Quantification of Borrelia burgdorferi Membrane Proteins in Human Serum: A New Concept for Detection of Bacterial Infection. Crystal S. F. Cheung, Kyle W. Anderson, Kenia Y. Villatoro Benitez, Mark J. Soloski, John N. Aucott, Karen W. Phinney, Illarion V. Turko. Analytical Chemistry. Volume 87, Number 22, November 2015. This collaborative proof of concept report shows that a new method can accurately identify a major B. burgdorferi lipoprotein in a small sample of patients with early Lyme disease. http://www.ncbi.nlm.nih.gov/pubmed/26491962
- Health Care Costs, Utilization and Patterns of Care following Lyme Disease. Emily R. Adrion, John N. Aucott, Klaus W. Lemke, Jonathan P. Weiner. PLoS ONE. Volume 10, Issue 2. February 4, 2015. Healthcare claims study shows Lyme disease costs upward of $1.3 billion to treat. Read entire article
- Lyme disease and post-treatment Lyme disease syndrome: the neglected disease in our own backyard. Lauren A. Crowder, Victoria A. Yedlin, Eric R. Weinstein, John N. Aucott, Kathleen B. Kortte. Public Health. Volume 128, Issue 9. September 9, 2014. The need for further understanding and communication presents an opportunity for public health research and education in Lyme disease and the sequelae of PTLDS. Read abstract
- Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients. Alison W. Rebman, Lauren A. Crowder, Allison Kirkpatrick, John N. Aucott. Clinical Rheumatology. June 13, 2014. The lack of seroconversion in a subset of patients, highlights the limitations of using serology alone in identifying early Lyme disease. Read abstract
- Serum Inflammatory Mediators as Markers of Human Lyme Disease Activity. Mark J. Soloski, Lauren A. Crowder, Lauren J. Lahey, Catriona A. Wagner, William H. Robinson, and John N. Aucott. PLOS ONE. (2014) The levels of serum chemokines and the levels of expression of their respective chemokine receptors on T cell subsets may prove to be informative biomarkers for Lyme disease and related to specific disease manifestations. Read entire article.
- Development of a foundation for a case definition of post-treatment Lyme disease syndrome. John N. Aucott, Lauren A.Crowder, and Kathleen B. Kortte. International Journal of Infectious Diseases 17 (2013) This article describes the initial findings of the SLICE Study, showing results from the first prospective controlled study in the United States designed to specifically measure symptom and health related quality of life outcomes after the antibiotic treatment of early Lyme disease. Read entire article.
- Atypical Erythema Migrans in Patients with PCR-Positive Lyme Disease. S.E. Schutzer, B.W. Berger, J.G. Krueger, M.W. Eshoo, D.J. Ecker; J.N. Aucott. Emerging Infectious Diseases • www.cdc.gov/eid • Vol. 19, No. 5, May 2013. This report re-emphasizes that the majority of proven cases of erythema migrans do not have the text book “bull’s eye” appearance and therefor may be harder for patients and physicians to recognize as a sign of early Lyme disease. Read entire article.
- Direct Molecular Detection and Genotyping of Borrelia burgdorferi from Whole Blood of Patients with Early Lyme Disease. Mark W. Eshoo, Christopher C. Crowder, Alison W. Rebman, Megan A. Rounds, Heather E. Matthews, John M. Picuri, Mark J. Soloski, David J. Ecker, Steven E. Schutzer, John N. Aucott. Published: PLoS ONE | www.plosone.org — May 2012 | Volume 7 | Issue 5 | e36825. This research collaboration shows that new state of the art methods can accurately detect the minute amount of DNA of the bacteria Borrelia burgdorferi in the blood stream of patients with early untreated Lyme disease. Read entire article.
- Bull’s-Eye and Nontarget Skin Lesions of Lyme Disease: An Internet Survey of Identification of Erythema Migrans. John N. Aucott, Lauren A.Crowder, Victoria Yedlin, and Kathleen B. Kortte. Dermatology Research and Practice, Volume 20. The results of this survey demonstrate that individuals are unfamiliar with the atypical skin manifestations of early Lyme disease. Read entire article.
- Probable late lyme disease: a variant manifestation of untreated Borrelia burgdorferi infection. John N. Aucott, Ari Seifter, and Alison W Rebman. BMC Infectious Diseases 2012, 12:173. This review of patients seen in the community practice of medicine shows that some patients with untreated late Lyme disease may have only chronic symptoms and do not have the classic objective findings of Lyme arthritis or nerve damage. Read entire article.
- Post-treatment Lyme Disease syndrome symptomatology and the impact on life functioning: is there something here? John N. Aucott, Alison W. Rebman, Lauren A. Crowder, & Kathleen B. Kortte. Quality of Life Research. Published online: February 1, 2012. This study aims to describe a cohort of participants with early, untreated Lyme disease, and characterize post-antibiotic treatment symptoms and functional impact of post-treatment Lyme disease syndrome over time. Read entire article.
- Sex Differences in the Clinical and Serologic Presentation of Early Lyme Disease: Results From a Retrospective Review Alison Schwarzwalder, MPH; Michael F. Schneider, MS; Alison Lydecker, MPH; and John N. Aucott, MD. Gender Medicine. Volume 7, Issue 4, 2010. This paper shows for the first time that women’s antibody responses used to diagnose Lyme disease may not be equivalent to those seen in men. Read entire article
- The Utility of “Google Trends for Epidemiological Research: Lyme Disease as an Example. Ari Seifter, Alison Schwarzwalder, Kate Geis, John Aucott. Geospatial Health 4(2), 2010, pp. 135-137. Article examines the potential of the Internet for monitoring epidemics of disease such as Lyme. Read entire article.
- Unusual Presentation of Lyme Disease: Horner Syndrome with Negative Serology Candis Morrison, PhD, CRNP, Ari Seifter, and John N. Aucott, MD. J Am Board Fam Med 2009;22:219 –222. This article highlights an unusual presentation that most physicians would not consider to be a result of Lyme disease. Read entire article.
- Diagnostic Challenges of Early Lyme Disease: Lessons from a Community Case Series John Aucott, Candis Morrison, Beatriz Munoz, Peter C Rowe, Alison Schwarzwalder and Sheila K West. BMC Infectious Diseases 2009, 9:79 Accepted: 1 June 2009. This manuscript describes the variability in the presenting symptoms of Lyme disease and difficulty with its diagnosis in the community-based practice of medicine. It shows physicians’ current, widespread difficulty in making accurate diagnosis and treatment decisions in early Lyme. Read entire article
Abstracts Presented at National Meetings about the Slice Study
- Temporal patterns of early cytokine immune response to infection with B burgdorferi. Aucott J, Schwarzwalder A, Miagkov A, Soloski M. Presented at the American Society for Tropical Medicine and Hygiene meetings, November 19-22, 2009. Read abstract
- Post-Lyme syndrome, an emerging complication of acute infection with Borrelia burgdorferi. Schwarzwalder A, Johnson-Greene D, Aucott J. Presented at the International Conference on Emerging Infectious Diseases, July 11-15, 2010. See chart
- Another Difference between Boys and Girls: Sex-Based Differences in Lyme Disease. L. A. Crowder, V. A. Yedlin, M. Soloski, J. N. Aucott See chart
- T-cell Immunophenotyping in Early Lyme Disease. L. A. Crowder, J. N. Aucott, M. Soloski See chart
Note: These abstracts describe the SLICE Study, a five-year prospective cohort study conducted through Johns Hopkins Green Spring/Johns Hopkins Bayview examining symptom prevalence, risk factors, natural history, and biomarkers associated with the development of persistent symptoms following exposure to Lyme disease.