Lyme Basics
Lyme Disease Diagnosis
LymeDisease.org believes that Lyme disease is a clinical diagnosis—based on your medical history, symptoms and likely exposure to ticks. Because the standard Lyme disease diagnostic tests are so insensitive, a negative test result does not mean you don’t have Lyme.
Note: Borrelia is the family of bacteria that causes Lyme disease. There are more than 300 known strains of Borrelia worldwide and over 100 in the United States. The ELISA and Western Blot tests detect only one strain, Borrelia burgdorferi (Bb).
Most medical practitioners receive only a single course on tick‐borne diseases during their training. As a result, Lyme and other tick‐borne infections are often not considered during a typical appointment unless the patient knows they were bitten and shares that information. Even then, if you live outside a recognized endemic area, these diseases may still be overlooked.
LymeDisease.org recommends finding a practitioner who has specific training in tick‐borne diseases. This may include members of ILADS (International Lyme and Associated Diseases Society), clinicians trained by ILADS members, or practitioners who have completed dedicated Lyme treatment modules. Our free Physician Directory is available at https://www.lymedisease.org/find-lyme-literate-doctors/ to help you locate a Lyme‐knowledgeable provider in your area. These clinicians were once called LLMDs (Lyme Literate MDs), but many now prefer the term Chronic Complex Disease Specialists because they treat multiple tick‐borne infections as well as other complex conditions such as long COVID and Epstein‐Barr virus.
A Lyme‐literate practitioner will take a detailed medical history, discuss the likelihood of tick exposure, review your travel history, evaluate your symptoms, and consider any previous test results. They may also order additional blood tests from CLIA‐approved laboratories to support your diagnosis.
It is important to know that Lyme disease can suppress the immune system. As a result, 20 to 30 percent of patients may have falsely negative antibody tests. Commonly used tests such as the ELISA, Western Blot, and Modified Two‐Tier Test (MTTT) still have accuracy rates below 50 percent.
LymeDisease.org offers a Lyme disease symptom checklist to help you document possible exposure and common symptoms. You will receive a printable report that you can bring to your healthcare provider, which may assist in the diagnostic process.
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Note: The information presented on this page has been reviewed and approved by a member of our Medical Leadership Board.
