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" . 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 .
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. 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 .
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 . 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 . 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 treatment 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:
- On February 15th of this year a doctor from the NC Health Department contacts a local resident via the phone and tells him he cannot possibly have Lyme disease. This medical diagnosis is based solely on the result of a negative Western Blot test, as this resident had never met this Doctor.
- A 2008 Press release dated 11 April by the Health Department states erroneous case numbers of both RMSF and Lyme disease.. Although the report says 544 cases of RMSF and 47 for Lyme the actual numbers of case reports for 2007 reported to the CDC were 665 for RMSF and 53 for Lyme.
- On 21 April of 08 a briefing was given to Dr. Leah Devlin from a concerned resident showing data to support an average of 600+ patients actually being treated for Lyme and Lyme Like Illnesses per year despite the low number of 53 cases reported in 07 to the CDC (Lyme disease is a mandatory reportable disease).
- In a 2005 Health Department Press release the state recognizes that Lyme disease is in North Carolina. That same year a state doctor gives a presentation to other doctors saying that Lyme disease is "rare" in NC and "it's not Lyme but STARI" . And in a 2008 letter to a resident a state doctor says "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." Why does North Carolina change its opinion about Lyme disease in our state so many times and cannot settle on a definitive view?
- The state claims that most of the reportable cases of Lyme disease are actually cases of STARI (Southern Tick Associated Rash Illness) which can present with the same clinical symptoms and rash. But does it really matter if it's Lyme or STARI? It is still a Lyme-Like-Illness treated with the same antibiotics. The difference is that STARI is said to be "mild" when compared to Lyme. However, a recent scientific publication that came out this year indicates that STARI can actually be very severe, depending on each individual case. Passed mainly by the Lone Star tick, this illness deserves the same attention as Lyme disease because of the many co-infections the Long Star tick is known to carry and how common this tick is throughout North Carolina and the South. An interesting note is that the CDC has been requesting patients to contact them so that more information on STARI can be collected . This request would not be known by the average resident but our state should be aware of this CDC request. So if it's not Lyme then why not prove it? No effort to notify doctors or residents that this no-cost study, which could help find the truth, has ever been made by our state.
- The News and Observer newspaper ran a story on two Cary residents who were being treated for Lyme disease. In that story, Dr. Jeffrey Engel, the state epidemiologist, said the Division of Public Health encourages doctors to promptly treat acute cases of Lyme or other illnesses spread by ticks. "Most patients with advanced Lyme disease are identified by a two-step blood test considered the gold standard for diagnosis." However, this statement is incorrect. The testing he mentions is used for surveillance and reporting purposes only and not to be used solely to diagnose the patient. As stated by the CDC, the actual diagnosis of Lyme is still a clinical one.
- An information guide was put out by the Wake County Health Department this past June and gives inaccurate data to NC doctors on the diagnosis of Lyme disease. It says "the presence of Lyme disease in North Carolina has been a somewhat controversial topic since questions have been raised as to whether or not B. burgdorferi is endemic to ticks in this area." Then it goes on to tell Wake County doctors to use the CDC surveillance criteria to diagnose a patient for Lyme and that if you have a negative blood test, than "it is highly unlikely that the person has Lyme disease, and no further testing is required." This is misleading and inaccurate as Lyme disease is a clinical diagnosis as stated previously. Depending on many factors, the laboratory tests for Lyme disease can be less than 50 percent reliable and show a negative reading on an infected patient.
- The state Health Department is mandated to educate and protect North Carolina residents from these diseases. Except for one press release in April of 08 warning about ticks and the press release of Aug 07 about the death of a resident from RMSF, little has been done in this area. One press release each year hardly satisfies the requirement to educate and warn residents of the hazards associated with ticks, as outlined in the state's 2004 Lyme Position Paper. In 2008 our state has one confirmed death and a second possible death from a tick related disease. North Carolina ranks at the top in the numbers of Rocky Mountain Spotted Fever cases and deaths within the nation. You would think that some form of public awareness messages, advertising and/or posters at parks, trails public recreational areas would be posted. North Carolina does a very poor job of warning residents about ticks and the diseases they can transmit.
- It was asked at the 21 April meeting with the Health Department Director that all wording be changed in the state manuals and publication to not use the word "rare" when describing Lyme disease in North Carolina, as this could mislead physicians to not properly diagnose their patients. The state agreed to this request and here is their official response on this topic . The word "rare" and "uncommon" have the same meaning, according to most dictionaries.
- The North Carolina requirements to meet CDC case definition using laboratory testing are more restrictive then the following states: CT, VA, SC, NY, and PA. Some of these states are endemic for Lyme and yet NC has stricter requirements and does not accept laboratory results from all certified labs specializing in Lyme testing (Igenex). In short, NC has more stringent requirements in reporting Lyme cases to the CDC than in states located in endemic regions.
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.