Why Some Physicians Become Frustrated Treating Lyme Disease Patients
Diagnostic uncertainty can challenge Lyme disease care
Knowledge gaps and testing issues contribute to physician frustration
Improved education and communication may help
A study found that some physicians become frustrated treating Lyme disease 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.1
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.” These findings underscore the challenges of recognizing Lyme disease coinfections and other tick-borne diseases.
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.
Why physicians report frustration treating Lyme disease patients
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 from 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 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
The study was designed to examine clinicians’ knowledge and experiences. It did not independently evaluate the accuracy of the diagnostic testing or treatment plans used by participating clinicians.
The study identified important knowledge gaps regarding tick-borne diseases and diagnostic testing. However, it did not evaluate the performance and limitations of Lyme disease testing or fully address concerns raised by patients who remain symptomatic despite negative test results or standard treatment approaches.
Frequently Asked Questions
Why are some physicians frustrated treating Lyme disease patients?
According to the study, frustration stemmed from diagnostic uncertainty, treatment disagreements, time-consuming clinical encounters, and differing opinions regarding Lyme disease management.
Did clinicians report knowledge gaps regarding tick-borne diseases?
Yes. Many clinicians reported limited familiarity with tick-borne diseases other than Lyme disease, including anaplasmosis and appropriate testing strategies.
Why is Lyme disease hard to diagnose?
The study found that clinicians were sometimes uncertain about which tests to order and how to manage patients with nonspecific symptoms and negative Lyme disease serology.
What did the authors recommend?
The authors recommended additional education, resources, and support for primary care and frontline clinicians managing patients with tick-borne diseases.
Clinical Takeaway
This study suggests that physician frustration with Lyme disease patients may arise from diagnostic uncertainty, limited familiarity with tick-borne diseases, time pressures, and differing treatment expectations.
Improving clinician education, diagnostic support, and communication may help bridge gaps in care for patients with Lyme disease and other tick-borne illnesses.
Related Articles
These articles examine related barriers to diagnosis and treatment:
Lyme disease skin rash puzzles doctors, leads to misdiagnosis
Doctors reluctant to diagnose Lyme disease?
Lyme disease myths lead to frustrations for doctors
References
- Mattoon S, Baumhart C, Barsallo Cochez AC, 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. 2021;21:894.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
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”.
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”.
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”.
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”.
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.
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.
Time to follow the science, instead of Fauci and his crew
Time to follow the science, instead of Fauci and his crew
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.
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.