Physician frustration with Lyme disease patients


In their study, “Primary care clinical provider knowledge and experiences in the diagnosis and treatment of tick‑borne illness: a qualitative assessment from a Lyme disease endemic community,” Mattoon and colleagues examined frontline and primary care doctor’s knowledge and practices for identifying patients with tick-borne diseases.

They found that some physicians are frustrated with Lyme disease (LD) patients. “Providers described challenges and frustrations in counseling patients with strong preconceptions of LD diagnosis and treatment in the context of chronic infection,” the authors wrote.

The authors came to this conclusion after a series of focus groups with 14 clinicians from three primary care practices and a survey of 24 urgent and emergency care clinicians.

The diagnostic process contributed to some of the frustration. “Clinicians had a self-professed lack of awareness of TBDs [tick-borne diseases] outside of Lyme disease, noting that they were unfamiliar with the signs, symptoms, and appropriate serologic testing needed to diagnose non-Lyme TBDs, as well as the prevalence of these TBDs in their local communities.”

More specifically, nearly 50% of clinicians reported feeling “not at all knowledgeable on anaplasmosis.”

Treatment approaches also led to frustration. Clinicians “appeared to have difficulty in identifying the appropriate treatment approach for patients with nonspecific symptoms and negative Lyme disease serology, with only 66.7% [of clinicians] providing the correct answer,” the authors wrote.

Problems presented by patients with chronic illness

Some doctors were frustrated when patients challenged their treatment plan.  “This commonly came in the form of patients rejecting results of serologic testing, wanting a different length of antibiotic course than that prescribed, or seeking an alternative treatment modality.”

Some doctors were frustrated with the time and effort involved in taking care of these patients. “Clinical encounters with these patients were described as time consuming and difficult.”

Finally, some doctors were frustrated by  contradictory information by outside providers. “Two focus group discussions centered around differences in care plans between participants’ primary care offices and what they termed the ‘Lyme literate’ community.”

Need for more education and training

Clinicians felt additional training would be help avoid some of these problems. The authors cited an example:

“I ordered what I thought was sort of the standard Lyme titer. It came back negative and this kid continued to have a swollen knee…He went to the orthopedist. They couldn’t figure it out. He’s going up to the rheumatologist. And it’s just because I ordered the wrong test…I think [I] ordered the PCR, which was like, you know, the quick and easy one. But actually that wasn’t probably a good one to do.” [FG3, Pediatrics] 

“The gaps in knowledge identified through the focus group and online survey data, coupled with the consistent necessity to provide point-of-care counseling and education to patients,” the authors concluded, “highlight a pressing need for resources and support for primary care and frontline providers treating patients for TBDs.” 

Editor’s perspective

Neither the authors nor the participating clinicians questioned the accuracy of the diagnostic testing and treatment plans they administer.

  1. Mattoon, S., Baumhart, C., Barsallo Cochez, A.C. et al. Primary care clinical provider knowledge and experiences in the diagnosis and treatment of tick-borne illness: a qualitative assessment from a Lyme disease endemic community. BMC Infect Dis 21, 894 (2021).

5 Replies to "Physician frustration with Lyme disease patients"

  • Jennifer Christie
    10/31/2021 (9:57 pm)

    For years I have believed that the main stream medical community has no way to learn about TBDs. There are so few classes or courses for them to take. Universities and Medical schools need to add the yet unwritten curriculum covering stealth pathogens that evade the immune system and are persistent.

  • Sue
    10/28/2021 (7:49 am)

    Time to follow the science, instead of Fauci and his crew

  • Ellen Marshall
    10/27/2021 (10:01 pm)

    The lack of knowledge by allopathic physicians combined with inaccurate diagnostics leads us to internet and other sources of information, treatment and support. That this alone has made us frustrating, time-consuming patients points to the lack of ongoing professional development. These cats are the pharmaceutical gatekeepers. This is the perfect storm. Because they refuse to be led by doctors who have been doing their homework.

  • Sophia Wasik
    10/27/2021 (10:41 am)

    I exclaimed out loud when I read this: they’re frustrated?!
    I have had Lyme for 35 years. It took 28 years to be properly diagnosed. It took my living out of my life. My IgeneX testing also revealed Bartonella. My 28 year old son has Lyme and Babesia. He is not functional. My 26 year old daughter also has Lyme.
    The medical community is frustrated?
    Why is it taking so long for the CDC & NIH to catch up?
    The irony of not being able to lobby for ourselves due to illness is again; frustrating.
    As Stuart pointed out, many physician’s do not even know the correct pronunciation-“Lyme’s”.

  • Stuart Shapiro
    10/27/2021 (9:06 am)

    If the professional medical community is frustrated, imagine the frustration of those afflicted. Many were admitted to ER’s, many were hospitalized, many were prescribed antibiotics and dismissed. The result being delayed proper diagnosis and possible long term serious effects. After a blood test, there seems to be a severe lack of concern from the medical community at beyond proclaiming “you tested positive for Lyme’s”.

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