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: there are over 300 strains of Borrelia in the world and over 100 in the United States. The ELISA and Western Blot only test for one strain of Borrelia (Bb)
Most practitioners only receive one course in tick-borne diseases during their medical school training; thus tick-borne disease is frequently not on their radar during a consultation unless you know you have been bitten by a tick and relay that information to your practitioner. Even then, unless you are in an endemic area, tick-borne diseases are not usually considered as a possibility for your symptoms.
LymeDisease.org recommends you find a practitioner who has been trained in tick-borne diseases such as a member of ILADS (International Lyme and Associated Disease Society), a practitioner who has been trained by an ILADS member, and/or a practitioner who has completed specific Lyme treatment training modules. We have a free Physician Directory https://www.lymedisease.org/find-lyme-literate-doctors/ available for your use on our website to help you located a Lyme practitioner in your area. We used to call Lyme practitioners LLMD’s (Lyme Literate MD’s) but they now prefer to be called Chronic Complex Disease Specialists since they treat multiple tick-borne infections and other chronic complex diseases such as long COVID, EBV (Epstein Barr Virus), etc.
Lyme practitioners will take your medical history, discuss the likelihood of you being bitten, review 1) your travel history, 2) your symptoms and 3) any tests you may have. They may order additional blood tests from specific CLIA approved labs to help with your diagnosis.
It is important to note that Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests. The commonly used ELISA, Western Blot, and Modified Western Blot test (MTTT) still have a less than 50% accuracy rate.
LymeDisease.org has developed a Lyme disease symptom checklist to help you document your exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctor’s appointment that may be helpful in your Lyme disease diagnosis.
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Note: The information presented on this page has been reviewed and approved by a member of our Medical Leadership Board.
