LDNR
Lyme Disease National Registry
 
 

Welcome to the Lyme Disease National Registry

The Lyme Disease National Registry was created by Gary Engelman, BSN, RN. The registry was established to improve the tracking and documentation of Lyme disease. There is a need for more Lyme disease treating physicians. The CDC reports nationwide Lyme disease case numbers, which range from 20,000-24,000 annually. According to the CDC, these numbers represent only 10% of the actual cases meeting the CDC surveillance.

This represents approximately 240,000 per annum of unreported cases of Lyme disease. The reason for under reporting is mostly due to the fact that many physicians don't recognize the disease. As a result, many patients are misdiagnosed with other ailments, which fall secondary to Lyme disease.

For the most part, reported cases do meet the surveillance criteria. This encompasses a physician diagnosed EM (bull's-eye) rash, or positive blood work. Studies have shown that the bull's-eye rash appears less than 50% of the time, and that Lyme disease testing, specifically the ELISA test, is highly inaccurate.

There is much debate amongst physicians about making a diagnosis. Many patients come back with negative blood work, especially as time has passed in the latent or chronic disease process, yet their subjective and physical findings are right in line with Lyme disease. In this scenario, it is suggested by some doctors, that false negative testing is occurring. An infectious disease physician who follows IDSA (Infectious Diseases Society of America) guidelines will only make the diagnosis with a positive EM (bull's-eye) rash and/or positive blood work of the disease itself. On the flip side, physicians who follow ILADS (International Lyme and Associated Diseases Society) guidelines will make a positive, clinical diagnosis, when the EM (bull's-eye) rash is NOT present and blood work is negative for the disease. Many of these doctors who treat the disease based solely on a clinical presentation fail to report the diagnosis, as they are under great scrutiny from the doctors affiliated with the IDSA.

Unfortunately, because of all of the debate over the diagnosis, many people go misdiagnosed and fail to receive proper treatment. As a result, these individuals can go on for many years, suffering without the proper treatment. In many cases, they will never get well because they are diagnosed with ailments that are secondary to Lyme disease. Lyme disease is known as the "Great Imitator", as it mimics hundreds of other recognized illnesses. This is because Lyme disease can affect any part of the physical body or the psychological mind.

The purpose and goal of the LDNR is to gather data on both reported and unreported cases of Lyme disease so that real numbers of Lyme disease prevalence can be generated for the population of the United States. The estimates of 100-150% of unreported cases will be corrected to give a better percentage of Lyme disease incidences, again, indicating true prevalence in the United States.

The data collected will also be used to generate statistics on prevalence by region, age, sex, race, etc. The LDNR will also collect and use data to identify not only the prevalence of Lyme disease itself, but will also identify the co-infections associated with the disease via case by case reporting. Most fields in the registration page will be used for data analysis.

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Gary Engelman, BSN, RN

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