Better education, reporting needed on Lyme disease

By Dave Tierney

For the Salisbury Post

Lyme disease is now fully acknowledged by the North Carolina Public Health Department to occur throughout our state. Inaccuracies in media stories that claim to use factual data are frequent when reporting on this disease. One reason may be that many health officials in the past have downplayed Lyme disease in North Carolina. The article “Tick bites pose summer hazard,” published in the July 13 Salisbury Post, had several errors I would like to correct. In addition, I present additional Lyme disease information valid for North Carolina.

• Until late 2008, N.C. health officials stated that Lyme disease is rare in the state and that the EM (erythema migrans) rash normally associated with Lyme disease was actually from a lookalike disease called STARI (Southern Tick Associated Rash Illness).

• The article stated that the last breakdown for North Carolina counties in a five-year period reported only 20 cases of Lyme disease. But the actual number of Lyme disease cases reported to the Centers for Disease Control (CDC) for 2006-2010 from North Carolina was 321 cases (N.C. Health and Human Services submissions), with a grand total of 1,573 for the state from 1990-2010.

• The last reported case of Lyme disease in Rowan County was not in 2003, as stated in the article, but in 2008, when one case was confirmed, two cases were listed as “probable” and two additional cases were listed as “suspect.” (Both confirmed and “probable” cases are reported to the CDC.)

• In 2007, the U.S. Navy published a report stating that Marines and sailors from Camp Lejeune Marine Base had 51 reported cases of Lyme disease from 1996-2006. This was the highest number from any Navy or Marine base used in the study and covering all of their military bases within the United States.

• The state’s official guidance on Lyme disease, sent out to physicians in 2011 from the chief epidemiologist for North Carolina, instructs doctors to look for Lyme disease in patients presenting with tick exposure history and compatible symptoms. Current references in the guidance are under revision, as they may cause confusion by referring to a document that tells physicians a positive laboratory test result is most likely a false positive and recommending that no testing take place under some circumstances. This reference is outdated, causes under-diagnosis and under-reporting, especially in a state that has recently reversed its position on Lyme disease occurrence, says it encourages Lyme disease awareness and already has one county classified as “endemic” for Lyme (Wake County). (Note: Phone contact with Dr. Megan Davies, the state epidemiologist, indicates this reference is under consideration for modification as of July 20.)

According to Dr. Maricia Herman-Giddens, the president of a non-profit organization called Tick-borne Infections Council of North Carolina, “Lyme disease is the most frequently reported tick-borne disease in the U.S., not RMSF (Rocky Mountain spotted fever). Cases meeting reporting (surveillance) requirements are generally the tip of the iceberg as far as representing the actual number of cases. Surveillance requirements meet a high standard and do not represent the actual number of cases. In addition, though certain tick-borne infections are supposed to be reported by law, many medical providers do not always do this.”

All of this means that Lyme disease is both under-reported and under-recognized by both physicians and residents. Publications that cite reported numbers do not reflect the true risk or occurrences in residents who are actually treated for a tick disease, notably Lyme. Proper reporting will improve if officials adapt a pro-active awareness message directed to both residents and physicians alike.

Our health care officials, the media and local governments can do a better job of educating physicians and residents and on providing uniform guidance on Lyme disease. North Carolina should have one standard Lyme disease message statement that encourages tick-borne disease awareness, education and facilitates for the proper diagnosis. Using a reference document that tells physicians a “positive test result is most likely a false positive” is viewed by this author as sending the wrong message to physicians and all North Carolina residents.

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Lt. Col. Dave Tierney (USMC-retired) lives in Cary. He is a pilot with Delta Air Lines who was misdiagnosed with multiple sclerosis before being treated for late-stage Lyme disease in 2007. He is a patient advocate for increasing lyme disease awareness and education.