The black-legged tick is the carrier of a bacteria that causes Lyme disease, and it’s here in NC.

By CHRISTINA RITCHIE ROGERS
CorneliusNews.net/DavidsonNews.net

Lyme Disease is a tricky disease. It is hard to diagnose, its treatment can be difficult, and it seems to be suffering from a serious PR problem in North Carolina.

The latter is perhaps the most concerning to both patients and experts. Patients don’t always know what to look for and doctors aren’t always looking for the right things.  And there’s not a consensus among doctors or public health officials about the prevalence or seriousness of the disease in North Carolina.

“Patients have to be their own doctors and their own advocates,” said Marcia Herman-Giddens, PA, MPH, DrPH. She serves on the Tickborne Infections Council of North Carolina, is an adjunct professor in the Gillings School of Global Public Health at UNC-Chapel Hill, and is a child and family health consultant. “They’re going to have to learn about the disease in order to get the care they need, until medical providers have better information.”

Lyme Disease has been found in 78 of North Carolina’s 100 counties in recent years. Click to visit the state Department of Health page on the disease.

Meanwhile, the numbers continue to climb. Lyme Disease cases reported in North Carolina increased 60 percent last year alone.  The Centers for Disease Control and Prevention (CDC) report incidences of Lyme in 78 N.C. counties, and has labeled four of them endemic – that is, places where two or more residents who definitively did not travel outside of their county contracted the disease.

Lyme is the second-most reported tick-borne disease in the state (behind Rocky Mountain Spotted Fever) and the most-reported tick-borne disease nationally, according to the CDC. In fact, the CDC last year reported new national estimates of about 300,000 cases annually, based on additional research, which is 10 times the number of cases previously reported.

So why are medical providers and patients in North Carolina having trouble getting Lyme Disease information and diagnoses?

“That’s the $64,000 question,” Herman-Giddens said, and a controversial one at that. “There seems to be two camps of thought: the one held by the CDC and Infectious Disease Society of America (IDSA), that Lyme Disease is easy to diagnose and easy to treat; and the one held by the International Lyme and Associated Diseases Society (ILADS), which is the opposite.”

That disconnect is not an easy one to fix she said, as it involves substantial change in information gathering and dissemination from the top-down.

“The state health department is doing a good job within the constraints it has from the CDC,” Herman-Giddens said, and the medical board often looks to the health department for information. “Until the CDC and the IDSA get better, more accurate information, nothing’s going to change.”

While the state health department, grassroots initiatives and awareness groups are helping to spread the word at the local and state levels, we still need widespread, national, formative change, Herman-Giddens said.

“Meanwhile, you have all of these people caught in between who are sick and in need of treatment,” she said.

Georgia Krueger of Davidson endured a wrong diagnosis and treatment before her Lyme Disease was diagnosed. (Christina Ritchie Rogers/DavidsonNews.net)

MISDIAGNOSIS AND WRONG TREATMENTS

For Davidson resident Georgia Krueger, it all started five years ago with a hand cramp. Days later, she came down with what she describes as “the flu on steroids.” More than a year later, after being misdiagnosed with Rocky Mountain Spotted Fever and three rounds of failed treatment with heavy antibiotics, she found a specialist, who diagnosed Lyme Disease. She began new, aggressive antibiotic treatments and has been fighting the disease ever since.

John McLean of Matthews, facing a heartbreaking diagnosis of early-onset Alzheimer’s Disease, renewed his wedding vows with his wife before his memory could slip away. After two years on Alzheimer’s medication and continued decline in mental function, he developed an (unrelated) infection and was put on a course of antibiotics. To his surprise, his mental faculties began to improve. Knowing that Alzheimer’s does not respond to antibiotics, this prompted him to research alternative diagnoses. He concluded that he had Lyme Disease, sought treatment from a specialist, and began to battle the disease – with success.

Retired US Marine Lt. Col. Dave Tierney of Raleigh, a pilot for 30 years, was diagnosed with Multiple Sclerosis about seven years ago and told by the neurologist he would never fly again.  After being on MS medication for three months he took it upon himself to research his symptoms –arthritis, neuropathy, and brain fog among them – and quickly found Lyme Disease.  With a specialist diagnosis and proper intravenous and oral antibiotics, he was back in the air six months later.

These North Carolina residents have more in common than their struggles with Lyme Disease:  Through their experiences they saw first-hand the need for increased Lyme Disease awareness in their home state, and each was moved to take action in different ways.

One common symptom of Lyme Disease is a “bullseye rash” around the bite, which appears within 3 to 30 days, or around 7 days on average. Click to visit a Centers for Disease Control page with more information about symptoms.

WHAT IS LYME DISEASE?

As in the cases of Krueger, McLean, and Tierney, misdiagnoses of Lyme Disease patients are common, in part because of the unique biological attributes of the disease.

Lyme Disease is a vector-borne disease – one transmitted by black-legged tick nymphs. The most common symptoms are rash, fatigue, fever, headache, and and other flu-like symptoms, though it can also mimic other diseases, including: Chronic Fatigue Syndrome, Colitis, Crohn’s disease, Early ALS, Fibromyalgia, Juvenile Arthritis, Lupus, and psychological disorders like depression and anxiety.

Once diagnosed, many cases of Lyme Disease can be treated successfully with several weeks or months of antibiotics. But Lyme can be challenging to diagnose because of both the vast array of possible symptoms and shortcomings in diagnostic blood testing.

“You would think by now they’d have found a better diagnostic test,” Herman-Giddens said, and explained that because of the bacterium behavior, false-negative lab results are common, particularly in patients during the first four weeks, as well as during antibiotic treatment.

The Borrelia burgdorferi bacterium, the culprit in Lyme Disease, doesn’t like to be in the blood stream and works to get out of it and into the organs, joints, and tissues as fast as it can, she said.

The catch is, the earlier doctors catch the disease, the better the outcome for the patients, generally.

HARD TO CRUNCH THE NUMBERS

Because of the high chance of false-negative lab results, proper diagnosis of Lyme Disease cannot rely on lab tests alone; it must include both a lab test and clinical exam. In a 2011 letter to N.C. medical providers, state epidemiologist Dr. Megan Davies encouraged health care providers to treat patients on the basis of clinical findings, citing limitations in diagnostic testing, particularly during the first two weeks of infection.

Despite acknowledging the problems with lab tests for Lyme, the Centers for Disease Control requires both a positive lab test and compelling clinical exam results before recording a Lyme Disease case as “confirmed” or “probable.”

Health officials receive the majority of Lyme Disease reports through electronic, positive lab reports, said Kirsti Clifford, Communications Assistant with the N.C. Department of Health and Human Services. “Upon receipt of this information state and local health officials collect clinical information on the patient to determine if the case definition criteria are fulfilled to classify a case as confirmed or probable,” she said.

Reports are categorized as “confirmed,” “probable,” “suspect,” or “not a case,” based on CDC criteria for each. Only confirmed and probable cases get recorded, and those records are for surveillance – not diagnosis, the CDC states on its website. So the cases that drive the reported numbers are not indicative of the total number of patients being treated for Lyme Disease in the state.

Though the CDC-reported surveillance numbers should not impact clinical diagnoses, they often do, Herman-Giddens said, because medical providers don’t always know the difference between the requirements used for CDC surveillance reports and the requirements they should consider for patient diagnosis.

“In 2013, the state reported 173 cases of probable Lyme disease to the CDC, but only 39 were classified as confirmed cases (confirmed by laboratory testing for surveillance purposes),” Clifford said.  In a letter to N.C medical providers this April, Dr. Davies said the number of reported confirmed cases more than doubled from 2008-2013, increasing from 16 to 38 cases, and the number of reported probable cases increased nearly four times, from 38 to 141.

Also in that letter, Dr. Davies designates Alleghany, Guilford, Haywood, and Wake counties as endemic.  Being categorized as endemic aids in CDC surveillance, but does not necessarily imply a greater risk of infection in that county, Dr. Davies said in the letter.

Like so many other records, the “endemic” qualification can be misleading without proper context and information. Counties are designated as endemic if two lab-confirmed cases of early Lyme, characterized by a rash, are identified in people who did not travel outside of their county during the disease incubation period.

Yet, not all infected patients present with the rash – the CDC reports that about 70-80 percent of infected persons present with a rash, but some other Lyme Disease resources suggest that number is more like 50-60 percent, or possibly as low as 27 percent.  Yet, the “bullseye” rash is commonly referred to as a “characteristic” symptom of Lyme.

Not only are there wide discrepancies in rash data from state to state and from different research organizations, but the numbers can vary further depending on whether a patient has acute (early) or chronic (late-stage) Lyme Disease.

Additionally, recent studies suggest there are other types of Borrelia in the south that may cause Lyme or Lyme-like symptoms, but the CDC does not recognize the possibility of other bacteria causing Lyme Disease or symptoms similar to it, Herman-Giddens said.

Map shows the range of Lyme Disease in the US in 2012. Click to visit the federal Centers for Disease Control statistics page for the disease.

NOT IN NC? DON’T BET ON IT

Surveillance and reporting are not the only obstacles to North Carolina’s Lyme Disease Awareness activists; history plays a big part. For years, state health officials denied that Lyme Disease existed in North Carolina, Herman-Giddens said.

Until recently, Lyme Disease was generally seen as a northeastern U.S. problem, with hot spots in Connecticut, New York, New Jersey, and other parts of New England. Yet, the North Carolina Department of Health and Human Services has records of clinical cases as early as 1983.

In a 2009 notice to N.C. clinicians, then- state epidemiologist Jeff Engel said the update was “intended to elicit assistance in determining whether Lyme disease is an emerging infectious disease in the state.” Engel had previously said publicly that science did not support the fact that Lyme Disease existed in North Carolina.

McClean happens to know exactly when he was bitten, he said: It was eight years prior to his Lyme diagnosis, and he got the “bullseye” rash. At that time, he said, his doctors told him it couldn’t be Lyme Disease because “there is no Lyme Disease in North Carolina.”

“I still get calls from people whose doctors tell them there is no Lyme Disease in North Carolina,” Herman-Giddens said. “But public health officials in North Carolina really are trying now. They are working hard to promote the disease within the limitations they have.” For example, they send letters with updated information for medical providers, and this year sought a proclamation from the Governor designating April as Tick and Mosquito Awareness Month.

“Any efforts to raise awareness of the public [are] likely to be good,” Clifford said, and “The [Department of Health and Human Services] supports efforts like [the proclamation] to raise awareness.”

The acknowledgment – albeit gradual – that ticks capable of transmitting Lyme Disease exist in North Carolina is important for state and CDC surveillance, for clinical diagnoses, and for public information and safety. But acknowledgment alone is not enough  – we still need to share accurate information with medical professionals and the public in more effective ways, Tierney said, including regular awareness campaigns and easy-to-access information the web.

GOVERNMENT AWARENESS

Beginning in 2010, Tierney began contacting towns and cities throughout North Carolina asking them to issue proclamations for Lyme Disease Awareness. Forty-four towns and cities issued proclamations in 2010, and last year 104 towns and cities issued proclamations, he said. But still he believed there remained a lack of awareness and media coverage statewide, so this year he took a different approach: rather than contact individual towns and cities, he reached out to Gov. Pat McCrory. In April, McCrory proclaimed May Lyme Disease Awareness Month. Tierney was the driving force behind that proclamation, which acknowledges the seriousness of the infection, the important differences between CDC criteria for reporting and the criteria doctors should use for diagnosis, the difficulties in diagnosis, the importance of proper tick removal, and the incomplete scientific information we have concerning the disease.

North Carolina Lyme Disease Foundation president John Dorney, a retired state government employee and Lyme Disease survivor, sees the proclamation as a “big step” in raising Lyme Disease awareness.

“Now we’ll be able to collect better data, and hopefully people will get treatment more quickly,” he said. “Hopefully now people will realize that Lyme Disease does exist in North Carolina, and that they can get ticks anywhere – not just in the woods.”

But Herman-Giddens isn’t as encouraged by the proclamation.

“It is a good thing, certainly, to get that sort of recognition, but that’s not really the kind of change that’s needed,” she said. “It might make patients feel better, to feel recognized, but until the CDC and IDSA get better, more accurate information and educate medical professionals, things aren’t going to change,” Herman-Giddens said.

Tierney also is working to push N.C. Department of Health and Human Services officials for awareness campaigns and other public information efforts.

SUPPORT GROWING

In addition to information sharing, there is a need for patient support, McClean said. He serves as the chairman of the North Carolina Chapter of the National Capital Lyme Disease Association. The association organizes monthly support groups for Lyme Disease patients, including one in Matthews.

There are currently four support groups that meet in different parts of the state to share information, personal stories, and hope with those suffering through difficult symptoms and treatments.

“It’s important to see those success stories,” Dorney said, and his is one of them. He contracted Lyme Disease in 1992, and after eight years of vicious treatment/resurgence cycles, he now is confident he’s beaten the disease once and for all. He still has some residual fatigue and nerve damage, he says, but is glad to say he is now healthy.

While Tierney and McClean have focused their activism efforts on affecting large-scale changes, Davidson resident Georgia Krueger, too, is effecting change, one person at a time. Though she is still battling her Lyme symptoms, which, at times, are debilitating, she reaches out whenever she can to fellow Lyme patients, offering a listening ear, helpful information, advice, and at times, a shoulder to cry on.  She painted her toenails green in observance of Lyme Disease Awareness Month, hoping to incite questions and spark conversation about the disease.

“I don’t want to be defined by this,” she said, “and that’s the challenge, that’s the pull: At the same time, I want people to be aware that it does happen here, I want them to know what to look for, and to be able to get the treatment they need.”

RELATED LINKS

 Tick removal: http://www.cdc.gov/lyme/removal/index.html

Here’s a link to the 2008 documentary film  “Under Our Skin.”

April 7, 2014, NC Division of Public Health, report on Lyme Disease in NC

NC Department of Health & Human Services, Tick-borne illnesses information page

NC Department of Health & Human Services, Lyme Disease information page

Federal Centers for Disease Control Lyme Disease page, and Lyme Disease statistics

Christina Ritchie Rogers is a Davidson-based journalist, and was the founding editor of CorneliusNews.net.

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