Looking for a Lyme Doctor

Many patients searching for a Lyme doctor do so after struggling with persistent symptoms, negative test results, or difficulty finding clinicians experienced in diagnosing tick-borne diseases.

Finding a Lyme Doctor

It can be difficult to find a Lyme doctor, particularly for patients who do not live in a Lyme-endemic area or who do not recall a tick bite.

Lyme disease can also be difficult to diagnose because symptoms often overlap with other medical conditions, and laboratory tests may be negative early in the infection.

Patients may face additional challenges when Lyme disease presents with non-specific manifestations, which may include:

• Neuropsychiatric Lyme disease
• Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)
• Lyme carditis
• Autonomic dysfunction such as POTS
• Persistent fatigue after Lyme disease
• Neuropathic pain
• Persistent symptoms after Lyme disease
• Concurrent tick-borne co-infections
• Post-treatment Lyme disease syndrome (PTLDS)

In addition, it can be difficult to find a physician willing to evaluate Lyme disease when standard Lyme disease testing is negative or inconclusive.

Some patients also struggle to find ongoing care after completing a single course of antibiotics if symptoms persist.

A Lyme doctor—sometimes referred to as a Lyme-literate doctor—recognizes that Lyme disease and other tick-borne infections may occur even when:

• Patients do not recall a tick bite
• Patients live outside traditionally endemic areas
• Patients do not meet strict CDC surveillance criteria
• Blood tests such as the Western blot are negative
• Symptoms persist after an initial course of antibiotics

Because Lyme disease can present in many different ways, careful clinical evaluation is often necessary when determining whether tick-borne infections may be contributing to a patient’s symptoms.

Lyme disease is also frequently misdiagnosed because symptoms can resemble other conditions such as chronic fatigue syndrome, fibromyalgia, autoimmune illness, or psychiatric disorders.

Delayed diagnosis is common. Some patients may see multiple physicians before Lyme disease or another tick-borne infection is considered.

In some cases, symptoms may be complicated by co-infections transmitted by the same tick, such as Babesia, Bartonella, or Anaplasma. These infections can alter symptom patterns and may require different treatments.

Access to Care and Telemedicine

In the past, many patients had to travel long distances to see physicians experienced in tick-borne diseases. Telemedicine, which expanded significantly during the COVID-19 pandemic, has made it possible for some patients to consult with Lyme disease experts remotely.

While telemedicine cannot replace all aspects of in-person medical care, it may help improve access for individuals seeking evaluation or second opinions regarding possible Lyme disease.

Examples of Telemedicine in Medical Care

Telemedicine has been used successfully in many areas of medicine. Hatcher-Martin and colleagues described its use in neurologic conditions including concussion, traumatic brain injury, dementia, epilepsy, movement disorders, multiple sclerosis, and inpatient neurology care.

“Telemedicine can enable earlier access to specialized care, remove the burden of travel, and improve patient satisfaction.”

A Cochrane systematic review also found telemedicine to be comparable to in-person visits for chronic illnesses such as diabetes and congestive heart failure.

The Veterans Administration has used telemedicine for a range of chronic conditions including mental health, dermatology, hypertension, and heart failure.

Infectious disease physicians have also used telemedicine to manage conditions such as pneumonia, urinary tract infections, bacteremia, endocarditis, and skin infections.

Burnham and colleagues concluded that telemedicine infectious disease consultation produced outcomes comparable to standard care for mortality, hospital length of stay, readmission rates, antimicrobial use, and cost.

Clinical Takeaway

Finding a Lyme doctor can be challenging, particularly for patients who live outside endemic areas, do not recall a tick bite, or present with non-specific symptoms such as neurologic changes, fatigue, autonomic dysfunction, or persistent pain.

Patients experiencing persistent or unexplained symptoms may benefit from consultation with clinicians experienced in diagnosing and treating tick-borne diseases.

Careful clinical evaluation remains essential when assessing individuals with possible Lyme disease.

Frequently Asked Questions

Why is it difficult to find a Lyme doctor?

Lyme disease symptoms can be complex and may overlap with other medical conditions. In addition, some patients have negative blood tests or do not recall a tick bite, which can make diagnosis more challenging.

Can Lyme disease occur without a known tick bite?

Yes. Many patients diagnosed with Lyme disease do not remember being bitten by a tick. Ticks can be extremely small and their bites may go unnoticed.

Do all Lyme disease patients test positive on blood tests?

No. Standard laboratory tests may be negative in early infection or in some patients with persistent symptoms. Clinical judgment is often necessary when evaluating suspected Lyme disease.

Can telemedicine help patients find a Lyme doctor?

Telemedicine may allow patients to consult with physicians experienced in tick-borne diseases without extensive travel. However, some evaluations and treatments still require in-person care.

What symptoms might lead someone to look for a Lyme doctor?

Patients may seek evaluation when they experience persistent fatigue, neurologic symptoms, joint pain, autonomic dysfunction, or other unexplained symptoms after possible tick exposure.