CALDA

Letters

California Lyme Disease Association (CALDA) is one of many patient education and advocacy groups for people with Lyme disease established to compensate for the abysmal failure of mainstream medicine to recognize the real Lyme disease. In 2004, because of our collective experience counseling hundreds of patients and listening to their stories, CALDA developed and distributed a questionnaire to patients with persistent Lyme disease throughout the nation.

Seventy-three percent (73%) of 182 respondents were denied a diagnosis of Lyme at least once due to a negative ELISA by CDC criteria. Of these, 31% were denied access to a Western blot (WB) by their physicians due to a negative ELISA. Sixty-one percent (61%) of respondents were denied a diagnosis for Lyme at least once due to a negative WB by CDC surveillance band criteria.

The strict adherence to CDC surveillance criteria (either ELISA or WB) for diagnostic purposes resulted in a delay in diagnosis of one year or more for 49% of responding patients. The average period of delay in diagnosis was almost 4½ years. Physicians of 81% of patients failed to diagnose their Lyme disease because of their strict adherence to the CDC surveillance criteria for diagnosis. Many of these patients incurred treatment delays as well. Delayed diagnoses in Lyme disease allows the disease to progress from generally treatable to more resistant or unresponsive to treatment, with devastating consequences to the patient.

Porwancher and his colleagues prove themselves once again to be more interested in protecting their “turf,” with little appreciation for what goes on in the trenches. (1)

Apparently there is no end in sight for CALDA’s volunteer patient advocates’ heartbreaking work.

(1) Porwancher R, Bockenstedt L, Dattwyler R, Halperin J, Johnson B, Krause P, Nadelman R, Shapiro E, Wormser G. Lyme Wars: Critique misses mark. bmj.com 30 Nov 2007 2. Centers for Disease Control and Prevention. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR Morb Mortal Wkly Rep 1995; 44:590–1.