Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study

Annemarie G Hirsch1, Rachel J Herman2, Alison Rebman3, Katherine A Moon4, John Aucott3, Christopher Heaney4,5, Brian S Schwartz1,4

Objective:   For many individuals with Lyme disease, prompt treatment leads to rapid resolution of infection. However, severe complications can occur if treatment is delayed. Our objective was to identify themes around belated diagnosis or treatment of Lyme disease using the General Model of Total Patient Delay (GMTPD).

Design: We conducted a qualitative interview study using indepth telephone interviews.

Setting: Participants were patients from a large, integrated health system in the state of Pennsylvania, USA.

Participants: There were 26 participants. Participants had to have a diagnosis of Lyme disease between 2014 and 2017 and a positive IgG western blot. We used a stratified purposeful sampling design to identify patients with and without late Lyme disease manifestations. To ensure variation in care experiences, we oversampled patients diagnosed outside of primary care.

Outcome measures:  We asked participants about their experience from first Lyme disease symptoms to treatment. We applied an iterative coding process to identify key themes and then synthesised codes into higher order codes representing the GMTPD stages: appraisal delay (symptom to recognition of illness); illness delay (inferring illness to deciding to seek help); behavioural delay (deciding to seek help to the act of seeking help); scheduling delay (seeking help to attending an appointment); and treatment delay (attending appointment to treatment).

Results:  Appraisal delay themes included symptom misattribution, intermittent symptoms and misperceptions about the necessity of a bull’s-eye rash. Health insurance status was a driver of illness and behavioural delays. Scheduling delay was not noted by participants, in part, because 10 of the 26 patients went to urgent care or emergency department settings. Misdiagnoses were more common in these settings, contributing to treatment delay.

Conclusion:  Our study identified potentially modifiable risk factors for belated treatment. Targeting these risk factors may minimise time to treatment and reduce the occurrence of preventable complications.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. 



Even though this was a very small sample size, and even though it had stringent criteria to participate (a positive test is like winning the lotto), it clearly shows obvious flaws in our medical system.

  • First, people are delaying seeing a doctor due to insurance.  We all know the earlier you treat the better the outcome and yet, insurance represents a HUGE obstacle.  If we want to move forward one of two things has to happen:  insurance needs to adapt a different policy on Lyme/MSIDS, and/or people need to be educated that it is far better to pay a minimal amount out of pocket if need be than thousands out of pocket later.
  • Second, intermittent symptoms are HALLMARK Lyme/MSIDS.  The fact people continue to hesitate means people are still not getting the memo.

Paragraph 1:  60% of untreated patients may develop intermittent bouts of arthritis

Paragraph 2:  These symptoms are typically intermittent

Paragraph 3:  Recurrent, intermittent attacks (weeks or months) of objective joint swelling in one or a few joints.

  • Third, the circulating information about a supposed “classic” bullseye rash will be the death of us all.  Remember, many never get it at all, yet it continues to rule diagnosis like an iron curtain.  Again, we must spread the word, and it must be acknowledged in the medical world that many never have a rash or they have a rash that doesn’t fit the strict criteria authorities have made up.


  • Fifth, doctors are STILL skeptical and are a huge part of the problem:

Not sure what to say to this other than they need more education on tick borne illness and they need open minds.  If ever there was a disease(s) that needs an open mind, it’s this one.  More and more is being discovered daily -much of it refuting long held doctrine, and frankly, much of the prior research needs to be redone as it was so completely biased and riddled with issues due to fraud and collusion of the researchers themselves.

To any health practitioner willing to learn: