Treatment Delays Increase Risk of Persistent Illness in Lyme Disease


In this retrospective study, one-third of Lyme disease patients report delayed treatment of greater than 30 days, and delayed treatment is associated with post-treatment Lyme disease (PTLD). Delays in treatment are shown to significantly impact patient outcomes and indicate that improved Lyme disease diagnosis and prevention strategies are needed.

Why was this study done?

The goals of the study were to analyze time-to-treatment in a sample of individuals treated for Lyme disease, including identifying risk factors for time to first medical contact and time under care. The study also evaluated associations between time-to-treatment and the development of post-treatment Lyme disease (PTLD). The study was done to determine if delays in treatment are significant to patient outcomes.

How was this study done?

A retrospective study was conducted of time-to-treatment among a general population sample of individuals treated for Lyme disease at Geisinger, a health system in Pennsylvania, the state with the most confirmed Lyme disease cases in the United States. Using electronic medical records and self-administered questionnaire data, respondents’ experiences were characterized by symptoms, care-seeking factors, diagnosis, and treatment. Associations between time-to-treatment and PTLD were examined, and risk factors were measured for delays in time to first medical contact and time under care.

Questionnaires were mailed to 5,314 adult patients who met previously described EHR-based criteria for Lyme disease between 2015 and 2017. Analyses focused on 778 respondents who reported that they were treated for Lyme disease within the past 5 years and reported a rash and/or a positive blood test for Lyme disease. Time-to-treatment was measured in days as the sum of two time windows: time to first medical contact and time under care. Logistic regression was used to evaluate factors associated with delayed time-to-treatment in each time window (>14 days vs. ≤14 days) and the association between total time-to-treatment (>30 days vs. ≤30 days) and PTLD.

What were the major findings?

In the sample of Lyme disease patients studied, delays in medical contact and care were identified in one-third of individuals and delays were associated with a higher risk for post-treatment Lyme disease. In the sample,

  • 25% had time to first medical contact greater than 14 days
  • 21% had time under care of a medical professional greater than 14 days
  • 31% had a total time-to-treatment greater than 30 days

Factors positively associated with delayed time to first medical contact included being uninsured and attributing initial symptoms to something other than Lyme disease. Diagnoses between November and April, and the absence of rash were positively associated with delays in contact and care. First medical contact in an emergency department or “other” setting showed delays in care.

Individuals whose treatment was delayed, defined as time-to treatment >30 days, had 2.26 times the odds of developing PTLD as those who were treated within 30 days of symptom onset.

What is the impact of this work?

Despite post-treatment Lyme disease occurring in an estimated 10-20% of Lyme disease cases, no peer-reviewed studies have evaluated the role of time-to-treatment in PTLD. This retrospective study indicates timely treatment may be important in preventing PTLD and other long-term consequences of Lyme disease.

Strategies to ensure more timely treatment of Lyme disease should include educational campaigns targeting patients and healthcare providers. Education could improve the recognition of the varied clinical presentations of Lyme disease and the erythema migrans rash and underscore the limitations of diagnostic tests. Although urgent care clinics can help patients be seen earlier, there is a clear need to improve disease recognition and diagnosis and reduce time-to-treatment in this setting. Another opportunity to reduce time-to-treatment is to build awareness among patients and medical providers of the risk of Lyme disease throughout the year in endemic regions.

Education, diagnostics, and prevention approaches are needed and should address the risk factors for treatment delays and aim to reduce both the time before and after contacting a medical professional.

This research was supported by:

funded by the Steven & Alexandra Cohen Foundation

Publication Information

Hirsch AG, Poulsen MN, Nordberg C, Moon KA, Rebman AW, Aucott JN, Heaney CD and Schwartz BS (2020) Risk Factors and Outcomes of Treatment Delays in Lyme Disease: A Population-Based Retrospective Cohort Study. Front. Med. 7:560018. doi: 10.3389/fmed.2020.560018

Johns Hopkins Lyme Disease Research Center

The Johns Hopkins Lyme Disease Research Center is focused on patient-based research in all manifestations of Lyme disease. Our goal is to translate our pioneering research into improved patient care, education, and health outcomes.


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Although this study is helpful for demonstrating that delays in diagnosis and treatment are bad, there are a number of concerns:

  1. The continued use of outdated and stringent criteria such as the EM rash and blood serology testing. Reality has proven a huge subset of patients meet neither.
  2. Electronic medical records and self-administered questionnaire data are only as effective as the people are filling them out, the questions being asked, and the objectivity of the person compiling the data.
  3. The PTLD label is deceptive and assumes ongoing symptoms are not caused by persistent/chronic infections.

The major findings; however, were helpful in showing that more than half were not obtaining treatment until 14-30 days.  This is important in the light of this mouse study which demonstrated Bb in the brain within a week of infection.

The factors of being uninsured and uneducated on tick-borne illness led to delayed time to 1st medical contact as well as those being seen between Nov-April and the absence of rash (both of which really should be under the banner of being uneducated about tick-borne illness as you can be infected in any month and getting the rash is highly variable).

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