State Views - North Carolina

"Thus I support the vast majority of NC physicians, who, like me, base their practice on scientific evidence. Until we have such evidence, physicians are correct to be skeptical of Lyme Disease acquired in NC." - Dr. Jeffery Engel, DPH State Epidemiologist, 2008

One of the most important pro-active measures in preventing Lyme and tick related diseases is to educate residents on the hazards ticks present and on what to do if you engage in outdoor actives that put you in a possible tick habitat. North Carolina appears to be doing less in educating residents when compared to our neighboring states and does not acknowledge Lyme disease as a serious problem. For example, the Governor of South Carolina established a yearly "Lyme Awareness Week" while North Carolina would only agree to "Tick and Mosquito Borne Illness Awareness Week" occurring during the third week in May of each year. However, in 2008 NC officials "missed" the event altogether by not advertising and promoting it. The state's 2004 Lyme Disease Position Paper outlines guidelines the state will follow for Lyme disease prevention and education. "NCDPH has a mission of disease prevention and will continue to issue and strengthen its message to the public regarding Lyme disease prevention. Partnering with the Division of Environmental Health PH Pest Management, NCDPH is committed to educating the public on avoiding tick bites and early manifestations of LD when the infection is most easily treated and cured" pdf. However, it appears that little has been done in terms of awareness and educational programs the past two years. It also appears the state does not want to actively acknowledge this disease and makes it clear on many reasons why Lyme disease is not in North Carolina pdf.

Here are some opinions and facts about North Carolina concerning Lyme disease and tick related illnesses:

In 2003 the number of CDC reportable cases of Lyme disease for the state was 156 and rising. This was due in large part by Dr. Jemsek operating out of Huntsville, NC. He was diagnosing a large number of these cases. Patients were coming to him from all over the state, some with the difficult to diagnose cases referred to him from other medical doctors in the region. The powers-to-be within NC did not like the rapidly rising number of Lyme reports nor his treatment used on patients, so the NC Health Department got involved and asked for assistance from the CDC to find means to restrict this doctor from diagnosing Lyme disease in the state. A doctor from the state sent this letter to the North Carolina Medical Board. pdf Shortly later, the North Carolina Medical Board filed charges stating that Dr. Jemsek deviated from acceptable standards of medical care and restricted his practice in the state (he has thus relocated to South Carolina). Doctors are "running scared" was the quote in an article referring to the medical climate since the Jemsek case and the appearance the NCMB is watching for doctors who treat too many cases of Lyme or who treat outside the Medical Board's view of "acceptable standards."

From the above action, the number of reported cases of Lyme disease declined to 31 in 2006 and 53 last year. However, it is estimated that 600+ patients are treated every year in our state. In a presentation given to Dr. Devlin, NC Department of Public Health Director, a concerned resident offered the following briefing pdf.

In 2005 a doctor from the DPH gave a presentation to other doctors saying that Lyme disease is "rare" in North Carolina and the 2007 edition of the state's Infectious Disease Manual had the following notes on Lyme disease pdf. As you can see, this information is mainly directed to our medical professionals and clearly influences their view that Lyme disease does not occur in North Carolina. As a result of this guidance there are doctors who tell their patients "there is no Lyme disease in North Carolina" or who will misdiagnose them with some other disease.

Because all counties in NC are not currently considered endemic for Lyme, you are not at high risk. If a patient tests positive for Lyme from a blood test (see the conclusion section of the following document) the CDC will interpret this result as a "false positive". So consider this question if you live in North Carolina: How can a patient who does not present the classic Lyme rash, ever be diagnosed if the only lab tests accepted for Lyme disease are not really accepted because we live in a low risk area, according to the CDC? If your doctor follows these guidelines, then you may go undiagnosed or even misdiagnosed. The CDC statement does not even say to retest the patient, but suggests the best way to deal with the "anxiety" of Lyme disease is to "focus on educational messages on the limited risks of acquiring Lyme disease." Those who believe that Lyme disease is not in North Carolina should consider the many residents treated for Lyme and Lyme Like Illnesses every year though these cases are never reported to the state for the above mentioned reasons.

The state has ignored pleas from residents over the past years that Lyme disease is more prevalent. The North Carolina Lyme Disease Foundation and TIC-NC are two organizations which support better recognition of LD within the state, and have been actively trying to change the state's view. In August of 2007, a patient suspecting exposure to LD was unable to make an appointment with Duke Hospital or UNC Hospital. Only recently are you able to schedule an appointment with their Infectious Disease Departments to be seen for LD. However, they will follow the IDSA's guidelines and will rarely treat patients beyond 30 days. Late and Chronic stages of this disease usually require much longer courses of treatment. So you can see that it is difficult to be diagnosed and treated in North Carolina. While some in our state's medical profession may disagree with the above statements, I ask you to see our "Lyme Stories" section written by Carolina residents to understand their ordeals as they sought a diagnosis and treatment.

Lyme disease is a "clinical" diagnosis as stated by the CDC and all doctors should use the patient's complete medical history, risk of exposure, any lab results and their symptoms to arrive at the correct medical diagnosis. How can you receive a proper clinical diagnosis in only 20 or 30 minutes, the time normally allocated for most medical appointments? Many doctors will ask you a few questions and then rely only on the results of the ELISA or Western Blot blood tests. These tests are dependent on the patient's immune response to the bacteria and the tests have a reliability factor of only 40-60 percent. For multiple reasons, positive patients may test negative. View the Wake County Health Department's guidance on diagnosing Lyme disease pdf. This official document, meant to be used by doctors, clearly states that if a patient tests negative for Lyme then it is highly unlikely they have the disease. The doctor will move to another diagnosis and the patient may spend years going misdiagnosed or undiagnosed while paying thousands of dollars in medical costs and doctor's fees. Until the state recognizes that Lyme disease is in NC and is as prevalent as some residents claim, this will be the scenario for years to come. As a resident, educating yourself is the first step to ensuring your ability to make the best decisions concerning your health and safety - the main reason for this web site.

The North Carolina Medical Board continues to have influence over doctors who treat patients for Lyme disease and a few doctors no longer will see LD patients due to our current medical climate. The following account is a true story:

A 15 year old girl from North Carolina was going blind due to Lyme disease. She needed long term IV antibiotic treatment according to her three treating physicians. When Dr. Jemsek's MB hearing passed judgment that he could no longer prescribe antibiotics to patients longer than 60 days, the mother appealed to the board to continue her daughter's antibiotic treatment by Dr. Jemsek. When it became apparent through another correspondence from the girl's ophthalmologist that the girl would indeed lose her sight if left untreated, the board wrote a letter to the girl's ophthalmologist asking "her" to administer the required treatmentpdf rather than grant a waiver for Dr. Jemsek to continue the necessary treatment. This doctor refused citing that administering IV antibiotic treatment for infectious diseases was outside her field of expertise. The board then denied the appeal, citing a waiver to continue treatment "was not appropriate in this matter, as well as not in the public's interest." A member of the board went on to say that the young girl needed neurosurgery to correct her problem...not more antibiotics. The mother knew this board member had no experience in this field and refused this opinion. This story has a happy ending as the mother took the girl out-of-state and after 1 ½ years of carefully monitored antibiotic treatment, and over 50 thousand dollars in out-of-pocket expenses, her daughter's vision is now normal. Just think about this for a minute-this young girl could now be blind had the mother listened to the NCMB and that board member.

The following are a list of events that are known to have occurred regarding tick borne illness in North Carolina. These activities are listed to show residents how the state views Lyme disease in North Carolina:

It's not Lyme disease, its STARI is the response the state continues to give yet has made little effort to prove this view. While this year there is a small state sponsored study of 20 patients being conducted on our East coast, many years have passed that could have yielded results and answers for residents, had this disease been researched sooner and more effort put into what is really occurring.

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This page was last updated on July 3, 2012