Schools of Thought about Lyme Disease

There is a deep division within the medical community as to how patients should be diagnosed and treated for Lyme disease. There are currently two evidence based standards of care: Infectious Diseases Society of America (IDSA) along with the Centers for Disease Control and Prevention (CDC) versus the International Lyme and Associated Diseases Society (ILADS).

IDSA and The CDC

The IDSA and CDC, maintain that Lyme disease is difficult to catch, easy to diagnose, and straightforward to treat. 

For those with positive Lyme disease tests, the IDSA and CDC recommend a standard 10- to 14-day course of a single antibiotic therapy. Even when treated early, the CDC concedes that an estimated 5-10% of Lyme patients continue to have symptoms for six months or more.

However, a study by researchers at Johns Hopkins University found the treatment failure rate for early Lyme disease was estimated to be much higher, leaving approximately 14% of patients to suffer symptoms that can be debilitating. Another study from the New England Journal of Medicine estimates even higher, finding 10-20% of patients continue to experience symptoms.

Back in 2013, Johns Hopkins presented evidence that at 6 months, 36% of patients reported new-onset fatigue, 20% felt widespread pain, and 45% has neurocognitive difficulties.Yet for some reason the IDSA and CDC state that patients who continue to experience symptoms six months after treatment have Post-Treatment Lyme Disease Syndrome (PTLDS), rather than a chronic infection. The PTLDS label does not help patients get better or consider the possibility of persistent infection, despite a growing body of credible research.

ILADS

In stark contrast to the one size fits all IDSA/CDC standard of care,  ILADS trained physicians consider the clinical presentation of the patient, potential exposure to ticks, symptom profile, and the possibility of coinfections as part of the differential diagnosis. Then, Lyme disease and other laboratory tests are used in a supportive manner to assist in the diagnosis of Lyme and other tick-borne diseases.

Typically, treatment options depend on the length of time a person has been ill, symptoms, response to treatment, and the types of therapies they’ve already received. Lyme disease treatments are typically individualized, with some patients requiring longer therapeutic interventions than others to experience improvements.

Perhaps the primary reason for the divide in the standard of care is the lack of a reliable diagnostic test. Peer reviewed studies confirm that the CDC recommended two tiered tests miss approximately one half of actual cases. Based on the limits of current testing, ILADS maintains that a clinical diagnosis may be necessary to accurately diagnose Lyme disease and coinfections. Additionally, it is important to note that currently available tests, which detect an immune response to the Lyme bacteria rather than the actual bacteria, cannot verify if treatment was successful. Thus, the CDC’s flawed two-tier testing approach may fail to detect Lyme in patients who indeed have the disease, delay the onset of treatment, or lead to the premature discontinuation of treatment.