Lyme disease—the most common vector-borne disease in the United States—is increasing in incidence , creating new challenges for physicians treating patients with this condition.
The blacklegged tick, which transmits Borrelia burgdorferi, the bacteria that causes most Lyme disease in the U.S., is slowly expanding its range in part due to reforestation and the rebound of deer populations, according to Grace Marx, MD, MPH, medical epidemiologist with the Bacterial Diseases Branch at the Centers for Disease Control and Prevention’s (CDC) Division of Vector-borne Diseases.
“It can be challenging for clinicians to consider Lyme disease when patients present with less common manifestations, contract Lyme disease during recent travel to a different state where Lyme disease is common, or if the clinician did not train in an area where Lyme disease is common,” said Dr. Marx.
And not everyone remembers that they got a tick bite.
“Unless the patient volunteers information about spending time outdoors, or the physician remembers to ask about risk factors, it might take a while before the diagnosis is made,” said Erica Kaufman West, MD, AMA’s director of infectious diseases.
Tests for Lyme disease also can be difficult to interpret, said Dr. Kaufman West. And failure to diagnose Lyme disease early can lead to delayed treatment and dissemination of disease, which increases risk of prolonged symptoms even after effective treatment.
A new AMA toolkit can help physicians and other health professionals provide better care for patients with prolonged symptoms and concerns about Lyme disease. The toolkit was also featured in a webinar hosted by the CDC.
The toolkit acknowledges the struggles physicians have faced in caring for patients with prolonged symptoms, said Dr. Kaufman West. “Recognizing that patients and physicians get frustrated when there is a lack of definitive diagnosis is necessary so that we can move past those emotions and focus on listening to patients and hearing what they are saying.”
The toolkit also encompasses best practices and guidance from the CDC, medical professional societies, resources for patients and health professionals, tips for providing care, interviews with experts, and a continuing education module. It also includes video examples of health professionals who care for complex patients.
“Everything is made to facilitate an open patient-physician relationship,” said Dr. Kaufman West.
The information in the Lyme disease toolkit covers four key areas.
Welcoming patients with prolonged symptoms
- It is important to be open and welcoming to patients experiencing prolonged symptoms. Providing empathetic care and a comprehensive evaluation, offering open communication about what is known and not known about the cause of their symptoms, and working with the patient to address their concerns and symptoms is the best approach.
- Obtaining prior records is also important to understand what laboratory testing and treatment has been done previously. Meanwhile, a thorough history can reveal key pieces of information, such as whether the patient ever lived in or visited an area endemic for Lyme disease, had a known tick bite, or had typical symptoms of Lyme disease.
Evaluating for other medical diagnoses
- To inform a comprehensive diagnostic evaluation, physicians should conduct a thorough physical examination and review prior laboratory test results.
- When considering whether Lyme disease could explain a patient’s symptoms, physicians should consider the likelihood of exposure to infected blacklegged ticks by asking if the patient recently spent time in the Northeast, mid-Atlantic or upper Midwest, or some areas along the Pacific coast and whether the patient’s presentation is clinically consistent with Lyme disease, she added. If testing for Lyme disease is clinically appropriate, the CDC currently recommends a two-step process for Lyme disease testing using FDA-cleared serologic assays. “Both steps are required and can be done using the same blood sample,” said Dr. Marx.
- For patients with prolonged symptoms without evidence of acute Lyme disease, physicians should consider and evaluate other possible medical issues. They should also let patients know that a comprehensive evaluation and management of symptoms may require multiple visits. These visits may take longer than the appointment’s allotted time. Consider billing for prolonged services and determine if you can use add-on codes like G2211 for complex visits that most payers recognize.
Compiling a multidisciplinary team
- Enlisting other specialists may be helpful to address specific patient symptoms. When possible, primary care physicians should identify clinicians who can provide specialty care, said Dr. Kaufman West. “This might be a neurologist to help with headaches or a physiatrist to help with fatigue. It might also be a physical therapist or psychologist.”
- No one physician can be the expert in everything, she added. “When you find yourself at the limit of your knowledge, it’s good to have a network of trusted colleagues with whom to collaborate.”
- But physicians need to temper patients’ expectations that the specialist will “find the answer.” Many patients will need ongoing management of prolonged symptoms.
Developing a care plan
- Physicians should use motivational interviewing to steer patients away from potentially harmful treatments such as prolonged antibiotics and towards a symptom-based approach. The focus should be on improving quality of life, not just on finding a cure. Encourage patients to use symptom trackers and educate them on where to find reliable information.
- Lyme disease is treatable with a 10 day to four-week course of antibiotics. However, about 5% to 10% of patients continue to experience symptoms of fatigue, body aches or difficulty thinking as a result of their infection for six months or longer after treatment for Lyme disease, said Dr. Marx. “When evaluating a patient with prolonged symptoms and concerns about Lyme disease, it’s critical to take a holistic approach that centers on listening to and validating the patient’s experience and thoroughly exploring a broad differential diagnosis.”
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Focus on patient goals, quality of life
Supporting patients with prolonged symptoms involves three key steps: listening to the patient talk about their symptoms and health goals, developing a treatment plan with the patient, and having patients track their progress.
Physicians often become set on finding a unifying diagnosis and treatment for a patient.
“However, we may ultimately be more successful if we focus our attention back to the patient and their goals and improving their quality of life,” said Dr. Kaufman West.
The CDC has an extensive suite of educational resources about Lyme disease for the general public and health professionals.
“We rely on our partners, including professional clinical societies such as the American Medical Association, to help us identify areas of educational need and to develop useful resources that are science-driven and evidence-based,” said Dr. Marx.
The CME module, “Caring for Patients with Prolonged Symptoms and Concerns About Lyme Disease," is enduring material available on the AMA Ed Hub™️, an online learning platform that brings together high-quality CME, maintenance of certification, and educational content from trusted sources, all in one place—with activities relevant to you, automated credit tracking, and reporting for some states and specialty boards.
Learn more about AMA CME accreditation.
