What is Post-Treatment Lyme Disease?

Lyme disease caught early is typically successfully treated with antibiotics.  However, if left untreated, the bacteria dissipate further into the body, hiding within cells and tissues (including the brain, heart, and central nervous system) where antibiotics have trouble reaching.  As the infection spreads, the manifestations vary considerably and other individual health and genetic factors come into play, making treatment more complex.

Some patients continue to experience symptoms even after antibiotic treatment.  The Centers for Disease Control and Prevention (or “CDC”) estimates that “approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches.” These symptoms can last months or even years. This condition is known as “post-treatment Lyme disease” or PTLD, and sometimes “chronic Lyme” or “post-treatment Lyme disease syndrome.”

Why so much controversy?

The exact cause of post-treatment Lyme is not yet known.  According to the National Institutes of Health (NIH) , several recent studies show that the Borrelia burgdorferi persists in animals after antibiotic therapy but this result has not yet been replicated with human subjects. Some experts argue that the lingering symptoms are more likely the result of residual muscle or tissue damage and an auto-immune response to the infection (rather than active infection). Part of the reason for the debate is that there is no diagnostic test currently available that can determine whether the bacteria have been effectively eliminated after treatment.

Further, there is just as much debate about how to treat post-treatment Lyme disease. Some argue that continued antibiotic treatment is the right course, while others cite risks associated with long-term antibiotic use.

What to do if you think you may have PTLD?

Talk with your doctor.  Be sure to document your symptoms.  Your doctor may want to have you tested for Lyme and may have suggestions about how to treat specific symptoms.

You may also want to look for help from a patient support or information group and you will want to tap into your friends and family for help.

Continue to track your symptoms and health. Keeping a health diary or journal can be both therapeutic and helpful for your doctor to monitor your condition.