I-Team: Controversy over Lyme disease in North Carolina

Infectious disease experts believe cases of Lyme Disease in NC are under-reported and infections are on the rise.
The ABC11 I-Team is exposing the controversy on treating Lyme disease.

In the past five years, more than 600 cases of the disease were reported in North Carolina. However, infectious disease experts believe those cases are under-reported and infections are on the rise.

Lyme disease is spread by the deer tick and the symptoms can affect your brain, heart and joints.

In May, Governor McCrory's office asked doctors to look beyond the CDC clinical definition of Lyme disease since patients who don't have those symptoms still might be infected.

The DeVinney Family of Chatham County knows those symptoms well. Seven members of the family have Lyme disease, but it's 25-year-old daughter Karyn who has suffered the most on her long road to recovery.

Her journey to find a cure illustrated the national debate many Lyme disease patients face getting a diagnosis and finding treatment.

"I'd say almost a decade was spent looking for what made me sicker and slower and weaker and more tired" Karyn said.

Karyn told the I-Team that for years, she suffered from severe joint pain, fatigue, migraines and vertigo. She had to give up her passion of playing college tennis and eventually dropped out of school.

Her mom, Becky, left her job as a teacher to take care of her daughter. She documented all their visits to doctors and hospitals across the country in a binder. It included doctor's notes, analysis, blood tests, EMGs, MRIs and cat scans.

Becky told the I-Team that doctors in North Carolina did not test for Lyme disease because they relied on the state Health Department position from years ago, that the disease was "rare" in the south.

But when Karyn finally did get tested, the results told her that she'd had it for many years. When she was diagnosed, she found herself in the middle of a national controversy that many patients with long term or chronic Lyme disease face - finding a doctor to treat them.

John Dorney knows the problem well as both a patient and president of the North Carolina Lyme Disease Foundation.

He says, "Many of them have to go out of state. Go up to Virginia; go up to Washington DC, New York, New Jersey, and Florida."

"One group of doctors believe you can get rid of Lyme disease very easily, other group believes in, chronic Lyme disease and the two sets of doctors don't agree and so they're at war and the patients are stuck in the middle," said Dorney.

The I-Team discovered the most mainstream doctors follow the guidelines set by the Infectious Diseases Society of America. They call for a "short-course of oral antibiotics" as the standard for treating the disease.

Dr. Martin Blaser, past president of the Infectious Diseases Society of America said, "We want to help people who are suffering that's our job, but our job is not to make things up just because people want answers we look at the scientific literature and we try to guide their doctors."

The I-Team discovered some of that scientific literature comes from Duke University professor Paul Lantos. He concluded a chronic form of Lyme disease does not exist. Lantos refused to be interviewed.

Karyn DeVinney explains, "If Lyme is treated as soon as the tick bite and the rash and the symptoms occur 2-3 weeks of antibiotics will kick it out and it will be done. But if it goes unrecognized for a year or even decades, like it did years for me. It can keep re-occurring."

"Long term, chronic Lyme goes into your nervous system, it goes into your muscles, it goes into your brain and it spreads and it attacks everything and it takes years of attacking it back to win your life back" Karyn said.

As both John Dorney and Karyn DeVinney discovered, there are only a handful of doctors in North Carolina who will help. Dr. Jenny Franczak in Chapel Hill is one of them.

"Well, it's hard to find doctors who are willing to take a risk and also be scrutinized by the medical board for practicing in a way that is inconsistent with the ideas and guidelines that they subscribe to" Dr. Franczak explained.

In 2006, the North Carolina Medical Board investigated a doctor who treated patients for chronic Lyme disease. John Dorney was one of those patients who were treated with long term antibiotics for three year by Dr. Joseph Jemsek.

"He saved my life," John Dorney said.

But as the I-Team learned, not all of Dr. Jemsek's patients agreed with his treatment. Some complained to the Medical Board that their treatments were costly and ineffective.

After a public hearing, the Board put restrictions on his practice making it difficult, he says, to continue treating his patients. Instead, he chose to move to another state. But that doesn't scare Dr. Jenny Franczak.

"I feel compelled to take care of these patients and treat them the best way that I know how to treat them," Dr. Jenny Franczak said.

For patients like Karyn Devinney that treatment includes a cocktail of antibiotics, vitamins and supplements for several years. Karyn showed us the numerous weeks' worth of pills she has to take.

"I have a picc line. These tubes are for administering IVs and also for weekly blood tests to make sure my kidneys and liver are working," Karyn said.

Mom, Becky explains, "It makes me angry that the doctors didn't pick it up and that they did not listen to us. It makes me angry that my daughter got as sick as she did."

"But I'm also thankful for the doctor now that is taking care of Karen, Karen's getting better, and that we've gotten our daughter back," she says.

The state Health Department now officially recognizes that Lyme disease does exist in 78 of 100 counties in North Carolina.

If you are bitten by a tick and begin to have symptoms like a bulls-eye rash on your skin, you need to see a doctor as soon as possible, before the disease begins to spread throughout your body.

To prevent Lyme disease, wear insect repellent and light colored clothes so ticks are easy to see. Wear long pants and a long sleeved shirt, tuck your pants into your socks or boots and tuck in your shirt. If you are walking in the woods, stay on trails.

1. Lyme Disease Association, Inc.
www.lymediseaseassociation.org/

2. Centers for Disease Control and Prevention
www.cdc.gov/Lyme

3. NC Dept of Health and Human Services
http://www.ncdhhs.gov/pressrel/2014/2014-04-07_tick_mosquito_month.htm

4. International Lyme and Associated Diseases Society
http://www.ilads.org/

5 Infectious Diseases Society of America
www.idsociety.org/

6. NC Lyme Disease Foundation
http://www.nclyme.net/

7. "Under Our Skin"
www.underourskin.com


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