Physician Frustration With Lyme Disease Patients
Some physicians report frustration when caring for patients with Lyme disease or suspected tick-borne illness. In a qualitative study, clinicians described challenges in counseling patients who arrive with strong beliefs about Lyme disease diagnosis and treatment.
“Providers described challenges and frustrations in counseling patients with strong preconceptions of Lyme disease diagnosis and treatment in the context of chronic infection,”
the authors wrote.
This frustration often stems from Lyme disease misconceptions held by both physicians and patients.
The investigators conducted focus groups with 14 clinicians from three primary care practices and surveyed 24 urgent care and emergency care clinicians in a Lyme disease–endemic region.
Diagnostic Uncertainty and Limited Knowledge
The diagnostic process contributed significantly to physician frustration.
“Clinicians had a self-professed lack of awareness of 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 tick-borne diseases.”
Nearly half of the clinicians reported feeling “not at all knowledgeable” about anaplasmosis.
Limited familiarity with other tick-borne illnesses can complicate clinical decision-making, particularly when patients present with nonspecific symptoms.
Challenges With Treatment Decisions
Treatment decisions were another source of frustration.
Clinicians “appeared to have difficulty identifying the appropriate treatment approach for patients with nonspecific symptoms and negative Lyme disease serology, with only 66.7% providing the correct answer,” the authors wrote.
Challenges in Managing Chronic Illness
Some physicians described tension when patients questioned testing or treatment recommendations.
“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.”
Doctors also noted that appointments with these patients were often time-consuming.
“Clinical encounters with these patients were described as time consuming and difficult.”
In addition, conflicting medical advice sometimes created further tension.
Two focus group discussions highlighted differences between care plans developed in primary care practices and those recommended by clinicians described as “Lyme literate.”
The Need for More Education and Training
Many clinicians in the study believed that improved education and training could help address these challenges.
One physician described an example of ordering the wrong test when evaluating a patient with suspected Lyme disease:
“I ordered what I thought was sort of the standard Lyme titer. It came back negative and this child 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.”
The authors concluded that gaps in knowledge and the need for patient counseling highlight the importance of additional resources for clinicians caring for patients with tick-borne diseases.
“The gaps in knowledge identified through the focus group and survey data, coupled with the consistent need to provide point-of-care counseling and education to patients, highlight a pressing need for resources and support for frontline providers treating patients for tick-borne diseases.”
Editor’s Perspective
Neither the authors nor the participating clinicians questioned the accuracy of the diagnostic tests or treatment plans they commonly use.
Related Articles:
Lyme disease skin rash puzzles doctors, leads to misdiagnosis
References:
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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 Infectious Diseases. 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.