New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease

For Immediate Release:
Contact: Vicky Jaffe, MS&L
(617) 937-2578, [email protected]

Statement from Pat Smith, President, Lyme Disease Association 

New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease

JACKSON, NJ Oct. 10 ─ The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, objects strenuously and with great alarm, to the restrictive new Clinical Practice Guidelines published this October by the Infectious Diseases Society of America (IDSA.) The new guidelines make it far more likely that Lyme disease will be missed in the early stages, when it is easier to treat. As a result, the guidelines set the stage for creation of a new generation of chronic Lyme disease patients, individuals with Lyme disease diagnosed and treated so late that they may never be cured.

In a nutshell, the reckless new IDSA guidelines forbid doctors from using clinical discretion in determining whether or not patients have Lyme disease. Instead, they require that doctors either see a characteristic rash known to occur in about half the patients, or that patients register positive on the two tests recommended by the Centers for Disease Control & Prevention (CDC) ─ tests known to miss up to half the patients. At any stage of disease, as many as half the patients may remain undiagnosed.

Lyme disease diagnosed late and allowed to disseminate for months or years without treatment causes severe disease that may never completely resolve. Late stage patients suffer more sequelae ─ continued symptoms ─after treatment and are far more likely to fail treatment than patients diagnosed in a timely fashion, with early Lyme disease. Late-stage patients suffering chronic symptoms are frequently very sick and in great pain, often as impaired as those with congestive heart failure and sicker than people with type two diabetes. 

Despite the basic math and the documented sequelae of late-diagnosed and late-treated Lyme disease, the new IDSA Guidelines state (without offering evidence or any supporting citations) that most Lyme patients are diagnosed early. This defies the experience of the LDA and of the patient community. It is also flies in the face of a study, now in press at the Journal of Evaluation in Clinical Practice, which has found that when patients fail treatment, the reason is overwhelmingly because they were diagnosed and treated late. 

The IDSA guidelines also deny that chronic persistent infection exists, arbitrarily dismissing all studies documenting persistent infection after short-term therapy and ignoring mounting evidence that more treatment is beneficial in chronic cases.

Finally, the IDSA guidelines fail to even mention another set of diagnostic and treatment guidelines published by the International Lyme and Associated Diseases Society (ILADS) listed with the National Guideline Clearinghouse, which offer an alternative view of Lyme disease diagnosis and treatment. 

LDA understands that the debate over the cause of chronic Lyme disease continues to be contentious and to divide those treating and studying the disease. There continue to be two standards of care. But the need to diagnose Lyme disease early enough to obtain the best treatment outcome and most favorable prognosis has never been controversial. Despite this, the IDSA guidelines are so draconian they stand poised to let many patients slip through the cracks and elude diagnosis until they are suffering late-stage, difficult-to-treat Lyme disease. As the voice of the Lyme disease patient community, LDA challenges these guidelines on humanitarian grounds.