How to Find a Lyme Literate Doctor (LLMD)

Lyme disease is a bacterial illness caused by infection with the Borrelia burgdorfer bacterium. Transmission to humans is believed to occur primarily through a bite from a blacklegged tick. Initial symptoms of Lyme disease may be vague and resemble nothing more than a stubborn case of the flu -- skin rash, fatigue, headache, muscle aches and joint pain. Often, Lyme must be identified by a clinical diagnosis that takes into account more than blood test results, which may produce false negatives. If identified as Lyme disease early, the illness can be cleared with a round of antibiotics. If misdiagnosed and treated as some other illness, Lyme can become chronic. Proper and timely diagnosis by a physician experienced with tick-borne disease is critical to managing Lyme.

What Is A Lyme-Literate Doctor?

• Many patient advocate groups in the Lyme community recommend seeking out physicians with specific experience treating the disease. Because symptoms may mimic other illnesses and the standard Ingenex blood test may produce false negatives, a physician with the expertise to consider clinical symptoms in addition to blood tests may be preferable to one who relies solely on blood results. Similarly, a Lyme-literate doctor, or LLMD, may offer more long-term treatment with higher doses of antibiotics until all symptoms are cleared to prevent the disease from becoming chronic. Lyme-literate doctors are likely to have gone out of their way to find Lyme resources and take extra courses, such as those offered by the International Lyme And Associated Diseases Society.

Controversy Surrounding Lyme Treatment

• Physicians disagree about the best treatment for Lyme disease, particularly chronic cases that display the onset of neurological symptoms reported by some patients. According to the Columbia University Lyme and Tick-Borne Diseases Research Center, the majority of physicians adopt the narrow diagnostic standards the Centers For Disease Control has established to monitor the prevalence of the disease. These standards rely heavily upon a limited spectrum of symptoms seen mainly in early onset of Lyme. Columbia concludes that such physicians may fail to diagnose Lyme in its later, chronic stage, which no longer presents classic early symptoms, but may manifest other changes not included in the CDC profile. Lyme literate doctors, on the other hand, utilize a broader set of criteria to diagnose and treat Lyme, including patient’s symptomatic response to antibiotics known to mitigate the disease. Many LLMDs will treat suspected chronic Lyme cases with antibiotics even in the absence of the early symptoms the CDC requires, or based on a positive result on the Ingenex blood test. This approach is more likely to intercept chronic Lyme cases that fall outside the diagnostic standards stipulated by the CDC. However, it also poses the risk of subjecting patients who do not have Lyme disease to long-term antibiotic therapy, which itself has the potential for dangerous side effects.

Insurance Issues

• Because no blood test yet exists to definitively establish the presence of Lyme disease within acceptable ranges of error, the Columbia University Lyme and Tick-Borne Diseases Research Center concludes that treatment based on CDC diagnostic standards and the broader LLMD approach both represent reasonable care. However, insurance providers adopt a different stance and require diagnosis of Lyme disease to comply with the standards of the Infectious Disease Society of America. The IDSA has historically maintained that evidence for chronic Lyme infection is inconclusive and recommends that insurers deny coverage for long-term antibiotic therapy prescribed by some Lyme-literate doctors.

Why Is It Hard To Find An LLMD?

• The prevalent acceptance of CDC standards for Lyme diagnosis among most physicians, along with the strong IDSA stance against coverage for chronic Lyme, causes many LLMDs to adopt a low-profile stance in their treatment of the disease. Many of these physicians feel that harm to their medical careers, as well as denial of insurance coverage to their patients with chronic Lyme disease, may ensue from openly advertising treatment for a controversial diagnosis like chronic Lyme disease. Consequently, most accept new patients only by referral from one of the Lyme disease patient support associations or from other Lyme patients.

Contact the Lyme Disease Association

• The Lyme Disease Association, or LDA, is the national non-profit organization that promotes awareness of the spread of Lyme and other tick-borne diseases in the United States. The LDA's web-based automated doctor referral tool provides patients with names of Lyme-literate doctors keyed to zip codes. After registering and entering home zip code information, patients will be provided with randomly-selected names and addresses of three LLMDs located as near as possible to their zip codes. Because Lyme literate doctors are not evenly distributed across the country, some patients may be required to travel to access the services of a LLMD referral.