Why are doctors reluctant to treat Lyme disease?

Doctor treating lyme disease in female patient.

It can be extremely challenging for patients to locate a physician who is trained in treating Lyme disease or even, willing to treat the illness. So, why all the reluctance by clinicians?


Findings from a study by Johnson and Maloney, “Access to Care in Lyme Disease: Clinician Barriers to Providing Care,” provide some insight into why clinicians may be hesitant in treating Lyme disease.¹

“The primary goal of this study was to identify the challenges faced by clinicians who provide care for patients with PLD/CLD,” the authors wrote. And, in so doing, may identify potential solutions that assist with recruiting and retaining more clinicians in treating Lyme disease.

The authors surveyed 155 clinicians from 30 states in the U.S. who treat patients with post-Lyme disease/Chronic Lyme disease (PLD/CLD).

Clinicians reported that the barriers to providing care included: complexity of care (79%), cognitive impairment of patients (57%), and frequent calls from these patients between their scheduled appointments (49%).

The authors included comments by clinicians which addressed several of these issues.

Complexity of Care

“Lyme disease is the hardest diagnosis I treat as each patient responds so differently to therapy, it is hard to know where to start with each one, what will work, what will make them worse, etc. Some just never seem to get better no matter what I do. It is gratifying to see others improve.”

“I think the most difficult problem is the cost of providing this amount of complex care on a cash basis. To really review hundreds of records, spend time with the patient and do a proper workup, takes hours. I’d like to see more support for patients and clinicians who chose to help this set of patients.”

Exclusion from Insurance Networks

“I knew that at some point I would be forced to stop taking insurance and move forward on a cash pay only basis. Looking at the numbers, taking commercial insurance for these patients just doesn’t make any sense. I believe the main issue that causes many of these patients to be without access to care is the amount they need to spend on their practitioners plus the out-of-pocket cost for out of network testing, labs and treatment. For most of these patients that it is anywhere from $10 to $20K per year. It is a heavy burden”

Stigmatized or Disrespected by Colleagues

“Three-quarters of respondents report having been stigmatized or treated disrespectfully by professional colleagues because they treat Lyme disease,” wrote the authors.

3 out of 4 doctors treating patients with post-Lyme disease/chronic Lyme disease report being stigmatized or treated disrespectfully by colleagues.

This was demonstrated in several ways: 1) lack of professional support from colleagues, 2) opposition to treatment of PLD/CLD from some physician organizations, 3) limited ability to share office and practice burdens with colleagues and 4) being excluded from participating in insurance networks.

“While my patients are generally very supportive, some of my colleagues have stopped speaking to me and I worry about the medico-legal repercussions of what I do.”

Physicians Reprimanded by Regulatory Organizations

“Nearly 4 in 10 physicians (39%) reported having been reported to a medical board, an insurer, or subjected to a hospital-based quality improvement inquiry,” wrote the authors.

With the number of cases of Lyme disease growing, the demand for doctors treating post-Lyme disease/Chronic Lyme disease will continue to increase. In an effort to recruit and retain clinicians willing to treat Lyme disease patients, the authors suggest:

  1. Improving clinician education regarding PLD/CLD to emphasize the uncertainty that exists regarding its pathogenesis, diagnosis and treatment along with the existence of divergent approaches to care.
  2. Setting a more professional tone towards treating clinicians to reduce stigma, marginalization, and regulatory burdens.
  3. Promoting innovative insurance reimbursement models that account for the complexity of care and time commitment necessary to provide care.


  1. Johnson LB, Maloney EL. Access to Care in Lyme Disease: Clinician Barriers to Providing Care. Healthcare (Basel). Sep 27 2022;10(10)doi:10.3390/healthcare10101882

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22 days ago

Currently battling Lyme disease head on. I have had it for a long time and it went undiagnosed. I was a happy go lucky kid, then all of a sudden I had severe anxiety, mood swings, depression, extreme fatigue, achy body, late puberty…I even ended up with lymphoma! Now at the age of 28 I found out I have had chronic lymes! I always thought something was just inheritably wrong with me. I am BLESSED I found my holistic health practitioner. She is helping me heal. Lyme ruined my hormones, clogged my detox pathways, and left me weakened. It is such a hard road, I get down sometimes, but I know there is light at the end of the tunnel. I could have continued to suffer through life. NO ONE deserves that!

13 days ago
Reply to  Alicia

The insurance company executives deserve it. Yes some do deserve it. Nobody can understand this until it happens to them. Then they get a rough introduction to understanding it.

Bonnie Weaver
Bonnie Weaver
11 months ago

When I first got Lyme Disease I was prescribed an antibiotic for a month (after some education by me of my family doctor). After that I had no more help except to be told to go to a Lyme specialist, go to the USA. It was not a cure because the treatment came rather late. I was infected in France while I was visiting my daughter who lives there, so I didn’t get the bullseye rash. I got an oval expanding rash which the family doctors here had never heard of.

8 months ago
Reply to  Bonnie Weaver

Doctors do not treat Lyme disease, because they do not understand the illness and
have difficulties diagnosing the Lyme disease. Plus even properly diagnosed, plenty of doctors do not know how to treat the patient, even making efforts to cure the diseased patient. Doctors rely way too much on hard evidence and blood tests. Lyme disease is treated based on symptoms, not tests, because tests are not reliable and accurate most of the time. Lyme disease is easy treatable in the first stage of the infection, when it is really difficult to diagnose or identify the pathogen causing the infection. Plenty of infected folks are not diagnosed or not treated correctly, because of lack of knowledge or expertise.

Donna Falcone
11 months ago

Thank you for covering this!