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You should consider Lyme disease if you have any of the symptoms of early Lyme disease. The risk of having Lyme disease increases if you were exposed to Lyme disease, recall a tick bite or had early symptoms (particularly the rash). You should also consider Lyme disease if you have any unexplained symptoms of Late Lyme Disease, especially if you have two or more symptoms.
Delay in diagnosis is common. Approximately 60% of patients with chronic Lyme disease are not diagnosed for at least 2 years. Diagnostic testing for early Lyme disease (within a month of exposure) is widely considered unreliable and is not recommended by the CDC because patients have not developed the antibodies the test detects. In late Lyme disease, antibody levels may decline. Roughly 50% of negative Lyme tests are false negatives.
In Lyme disease, there are two standards of care reflected in the medical guidelines of two specialty societies: the International Lyme and Associated Diseases Society (ILADS) and the Infectious Disease Society of America (IDSA). The differing guidelines reflect largely the poor state of laboratory testing for Lyme disease. The ILADS guidelines permit the exercise of clinical judgement by the treating physician, while the IDSA guidelines restrict treatment options. LymeDisease.org recommends that patients be informed about both standards of care and in consultation with their physician, determine the best treatment approach based on their individual circumstances.
LymeDisease.org endorses the ILADS guidelines for Lyme disease, which are listed on the National Guidelines Clearinghouse and included a patient representative from the organization as a co-author.
If you have Lyme disease, please participate in MyLymeData.
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