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Research Background

Lyme disease is the most common vector-borne illness affecting more than 300,000 people annually in the United States (Centers for Disease Control, 2017)

Common symptoms include erythema migrans, fever, headache, joint pain and swelling (Lyme Disease Association, 2017)

10-20% of patients will develop debilitating symptoms even after receiving treatment (Paules, Marston, Bloom, & Fauci, 2018)

Treatment options are available if detected early, however, health complications can arise with delayed treatment (Hirsch, 2018)

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Study Significance

Less than a quarter of patients suffering with Lyme disease are correctly diagnosed within six months of the onset of their symptoms (Schwartz et al., 2017)

Misinterpretation of common symptoms (Lyme Disease Association, 2017)

Late and misdiagnosis due to the lack of clinical findings and concrete medical definition (Maloney, 2015)

Delayed treatment and the development of chronic Lyme disease (Johnson, Wilcox, Mankoff, & Stricker, 2014)

Lack of physician recognition, 6 of 285 physicians in Connecticut admitted to diagnosing patients with chronic Lyme disease (Lantos, 2015)

Kirsten

Misinterpretation: Half of the people who have Lyme disease will get a rash, but only 9% of them actually develop a red ring with a dot in the middle, commonly known as a bullseye (Lyme Disease Association, 2017).

Importance and impact of chronic Lyme Disease: Because there is no specific medical definition or reputable clinical findings related to chronic Lyme disease, the diagnosis of chronic Lyme disease for patients often gets overlooked (Maloney, 2016).

Physician: In a study which surveyed physicians working in Connecticut, the state with the highest prevalence for Lyme disease, only 6 of 285 physicians admitted to diagnosing patients with chronic Lyme disease, but even fewer physicians were likely to prescribe long-term antibiotics to specifically treat chronic Lyme disease (Lantos, 2015).

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Methods

Data Collection: An electronic survey, consisting of 17 questions, was used to gather data from University of Lynchburg faculty and staff and various community members known by the researchers.

Recruitment: Mass emails sent to University of Lynchburg faculty and staff.

Informed Consent: Approved by the University of Lynchburg Institutional Review Board and given by the researchers at the beginning of the electronic survey.

Participant Characteristics: In order to participate, respondents must have previously received a diagnosis of Lyme Disease or had experienced symptoms.

Data Analysis: All responses were compiled and analyzed by the researchers.

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Study Highlights

A total of 15 participants participated in the Lyme Disease Patient Experience Survey.

Over half of participants did not experience symptoms until 48 hours after an infected tick bite.

Initial symptoms varied from person to person. The most common initial symptom reported was fatigue.

Six of the fifteen research participants reported that their Lyme disease had been previously misdiagnosed as chronic fatigue, while four reported a misdiagnosis of Fibromyalgia.

Over half of the respondents indicated that Lyme disease has affected their mental health in a significant way.

73% of participants indicated antibiotics as their initial treatment. Currently, only 13% percent of participants use antibiotics as a form of treatment for symptoms.

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Results

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Results

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Results

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Results

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Qualitative Results

“As of January, 2018, we had spent $125,000, wiped out our $20,000 savings.”

“Do not waste money and time seeing a primary care physician as they will not give you accurate treatment or information. The longer you wait for a diagnosis, the longer it takes to heal.”

“I spent 20 years and thousands of dollars on diagnosis and treatment without recovery.”

“Lyme has destroyed my life, ruined my marriage, decimated my bank account, left me homeless.”

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Qualitative Results

“It’s been difficult finding a doctor to help me heal.”

“Loss of family and friends. Isolation, being believed. Getting insurance to cover cost of treatment. Losing every day ability to live a normal life. Invites to do things have completely stopped. Trying to explain your symptoms to regular doctors. Not being dismissed when you are in the E.R. The symptoms are real and need to be recognized as such.”

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Recommendations

Increase number of participants.

More research is required to assess the effectiveness of the treatments that were presented in the survey.

Incorporate more specific questions inquiring about current treatment methods.

Developing better direct detection tests to receive better definitive diagnosis.

Mesa: A recommendation for future research would be to have a larger number of participants. Sending a survey through an organization or group would reach a high number of Lyme disease patients with less effort on the researcher’s behalf. A larger window of time to collect data, and encourage participants to forward the survey to other people diagnosed with Lyme disease. With a higher number of survey participants, the results can be more seen as reliable when analyzing the survey questionnaire results.

Kirsten In regards to future research, more research is required to assess the effectiveness of the treatments that were presented in the survey. Completing a longer study would allow researchers to observe first-hand the effectiveness of a particular treatment.� Taylor Future recommendations for the study of Lyme disease include developing better direct detection tests to receive better definitive diagnosis, and enhancing the two tiered test approach that provides a higher sensitivity detection for early Lyme disease which was mentioned by the Centers for Disease Control and Prevention.

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Conclusion

The research findings highlighted the adverse effects of the misdiagnosis and late diagnosis of Lyme disease.

In order to successfully treat patients with Lyme disease, it is vital that physicians work tirelessly to make correct diagnoses and offer diverse treatment plans to patients.

Lyme disease not only affects the physical body but also can affect an individual’s mental health and their relationships with those around them.

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References

Adrion, R. E., Aucott, J., Lemke, W. K., & Weiner, P. J. (2015). Health care costs, utilization, and patterns of care following Lyme disease. PLOS. https://doi.org/10.1371/journal.pone.0116767.

Berende, A., Hofstede, H., Vos, F., Middendorp, H., Vogelaar, M., Tromp, M., Hoogen, F., Donders, A., Evers, A., & Kullber, B. (2016). Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. The New England Journal of Medicine 374(10), 1209-1220. https://doi.org/10.1056/nejmoa1505425.

Centers for Disease Control and Prevention (2017). Lyme Disease. Retrieved from https://www.cdc.gov/lyme/index.html.

Hirsch, A., Herman, R., Rebman, A., Moon, K., Aucott, J., Heaney, C., & Schwartz, B. (2018). Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open, 8(6), 1-6. https://doi.org/10.1136/bmjopen-2017-021367.

Johnson, L., Wilcox, S., Mankoff, J., and Stricker, R., B. (2014). Severity of chronic Lyme disease compared to other chronic conditions: A quality of life survey. Peerj. https://doi.org/10.7717/peerj.322

Kilpatrick A., Dobson, A., Levi, T., Salkeld, D., Swei, A., Ginsberg, H., Kjemtrup, A., Padgett, K., Jensen, P., Fish, D., Ogden, N., & Diuk-Wasser, M. (2017). Lyme disease ecology in a changing world: Consensus, uncertainty and critical gaps for improving control. Philosophical Transactions of the Royal Society of London Series B: Biological sciences, 372(1722), 1-11. https://doi.org/10.1098/rstb.2016.0117.

Lantos, P. (2015). Chronic lyme disease. Infectious Disease Clinics of North America 29(2), 325-340. https://doi.org/10.1016/j.idc.2015.02.006.

Lantos, P, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Unorthodox Alternative Therapies Marketed to Treat Lyme Disease. Clinical Infectious Diseases. 60(12), 1776-1782. https://doi.org/10.1093/cid/civ186.

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References continued

Lyme Disease Association. (2017). About Lyme disease symptoms. Lyme Disease Association, Inc. Retrieved from https://www.lymediseaseassociation.org/about-lyme/medical-lyme /symptom-list.

Lyme Disease Association. (2014). Chronic Lyme patients: Worse quality of life than other chronic diseases. Lyme Disease Association, Inc. Retrieved from https://www.lymediseaseassociation.org/index.php/lda-news-a-updates/1225-chronic-lyme-patients-worse-quality-of-life-than-other-chronic-diseases.

Maloney, E. (2016). Controversies in persistent (chronic) Lyme disease. Journal of Infusion Nursing 39(6), 369-375. https://doi.org/10.1097/NAN.0000000000000195.

Mayo Clinic. (2018). Lyme disease: Diagnosis and treatment. Retrieved from https://www.mayoclinic.org/diseases-conditions/lyme-disease/diagnosis-treatment/drc-20374655.

Moore, A., Nelson, C., Molins, C., Mead, P., & Schriefer, M. (2016). Current guidelines, common clinical pitfalls, and future directions for laboratory diagnosis of lyme disease, United States. Emerging Infectious Diseases, 22(7), 1169-1177. https://doi.org/10.3201/eid2207.151694

The Medical Letter on Drugs and Therapeutics. (2016). Treatment of Lyme disease. The Journal of the American Medical Association 315(22), 2461-2462. https://doi.org/10.1001/ jama.2016.6888.

National Institutes of Health. (n.d.). Chronic lyme disease. Retrieved on August 31, 2018, from https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease.

Paules, I., Marston, D., Bloom, E., & Fauci, S. (2018). Tickborne diseases- Confronting a growing threat. The New England Journal of Medicine. 379, 701-703. http://doi.org/10.1056/NEJMp1807870.

Schwartz, A., Hinckley, A., Mead, P., Hook, S., & Kugeler, K. (2017). Surveillance for Lyme disease — United States, 2008–2015. Surveillance Summaries, 66(22) 1-11. https://doi.org/10.15585/mmwr.ss6622a1.

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