Patients With Persistent Lyme Symptoms Want Care, Not Dismissal
Persistent Lyme symptoms remain controversial
Patients deserve careful evaluation and clinical judgment
Open-minded care matters in complex illness
“Minds are like parachutes. They only function when open.” This quote by Thomas Dewar came to mind after reading the article Chronic Lyme Disease1 published in Infectious Disease Clinics of North America.
Patients with persistent Lyme symptoms often seek answers after months or years of illness. Yet many report feeling dismissed when their symptoms do not fit neatly into conventional explanations.
In the article, the author writes that “the scientific community has largely rejected chronic, treatment-refractory Borrelia burgdorferi infection.” This conclusion is based on “the failure to detect cultivatable, clinically relevant organisms after standard treatment.”
The article argues that chronic Lyme disease does not exist, that antibiotic treatment beyond 14 to 28 days offers no benefit, and that most patients do not experience lingering symptoms after treatment.
It is particularly noteworthy that Paul Lantos, MD, a Duke University Medical Center researcher, served as co-chair of a panel responsible for updating the Infectious Diseases Society of America’s (IDSA) Lyme disease treatment guidelines. The recommendations from these guidelines influence the care many Lyme disease patients receive.
How Should Physicians Approach Patients With Persistent Lyme Symptoms?
Dr. Lantos includes a section entitled, “Clinical Approach to Patients with Chronic Lyme Disease Diagnosis,” in which he offers recommendations for physicians caring for patients who believe they have chronic Lyme disease.
He advises clinicians to listen carefully during consultations and explain why Lyme disease may not account for a patient’s symptoms.
“…a certain amount of time must be spent reviewing past experiences and past laboratory tests … then explaining why Lyme disease may not account for their illnesses.”
According to Lantos:
“Even if chronic Lyme disease lacks biological legitimacy, its importance as a phenomenon can be monumental to the individual patient.”
He notes that many patients have undergone frustrating and expensive medical evaluations without finding answers.
The Importance of an Open-Minded Evaluation
Managing patients who believe they have chronic Lyme disease can be challenging, Lantos writes. Some patients are firmly convinced they have chronic Lyme disease and may request specific therapies.
He advises physicians to suppress preconceptions and biases and avoid appearing impatient, dismissive, or rushed.
“Each patient’s clinical story and personal history is unique and valid, even if one concludes that they do not have Lyme disease.”
These recommendations are important. However, patients with complex illnesses often seek something more than validation. They want a thorough evaluation and thoughtful treatment recommendations based on their individual circumstances.
For many patients with persistent Lyme disease symptoms, diagnosis and treatment decisions depend on careful clinical judgment because laboratory testing alone may not fully explain their illness.
Patients Want Care, Not Dismissal
For patients who remain chronically symptomatic, Dr. Lantos writes that there has been “little evidence of active infection, and their symptoms do not respond to antibiotics any better than to placebo.”
When dealing with complex illnesses, physicians must develop trusting relationships with patients. It is difficult to provide the highest level of care if clinicians enter the doctor-patient relationship with fixed assumptions about either the disease or the patient reporting symptoms.
Should a patient not have any of the three classic objective signs of Lyme disease—a bull’s-eye rash, swollen knee, or Bell’s palsy—identifying the infection often depends on a careful clinical evaluation.
For many patients with persistent symptoms, diagnosis and treatment decisions may also be complicated by the limitations of Lyme disease testing.
Patients want physicians to provide thoughtful evaluation, clinical judgment, and effective care. They do not want their symptoms dismissed because they fall outside a preferred narrative.
A Need for a More Nuanced Conversation
It may be time for a broader discussion that recognizes the complexity of Lyme disease, the limitations of current testing, and the variability of patient outcomes.
A one-size-fits-all approach may not adequately address the needs of every patient experiencing persistent symptoms after Lyme disease.
Frequently Asked Questions
What are persistent Lyme symptoms?
Persistent Lyme symptoms may include fatigue, pain, cognitive difficulties, sleep disturbances, and other symptoms that continue after Lyme disease treatment.
Can Lyme symptoms continue after treatment?
Some patients continue to report fatigue, pain, cognitive difficulties, and other symptoms after treatment. The cause of these persistent symptoms remains an area of ongoing research and debate.
Why do some Lyme patients feel dismissed?
Many patients report frustration when symptoms persist despite treatment or when testing does not provide clear answers. Open communication and careful evaluation can help address these concerns.
Clinical Takeaway
Patients with persistent Lyme symptoms often face uncertainty, conflicting opinions, and difficulty obtaining answers.
Rather than beginning with assumptions about what Lyme disease cannot explain, clinicians should remain open to a careful evaluation of each patient’s history, symptoms, diagnostic findings, and treatment response.
Related Articles
Persistent Lyme disease symptoms
Post-treatment Lyme disease syndrome
Lyme disease misdiagnosis
Recovery from Lyme disease
References
- Lantos PM. Chronic Lyme Disease. Infect Dis Clin North Am. 2015;29(2):325-340.
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
