Debate over Lyme disease in Nebraska: Chronic or curable?

The characteristic "bull's-eye" reaction to a tick bite. (Photo courtesy of the U.S. Centers for Disease Control)
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October 4, 2012 - 6:30am

OMAHA, NEB. - “One day, all of a sudden, I woke up and I just couldn’t even get out of bed,” said Lynden Scahill of Lincoln, Neb. “I got out of bed finally and just fell on the floor, and I was passing out.”

Scahill received her clinical doctorate in occupational therapy from Creighton University last December. But before she did, she faced a medical dilemma of her own. She was sick, really sick, and she didn’t know why.

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Photo courtesy of the CDC

Ticks of the species Ixodes (shown here) are known vectors of the pathogen that causes Lyme disease.


 

Photo courtesy of the CDC

Click here for a map showing where the risk of contracting Lyme disease is highest.

“I was basically bed-ridden for a few days,” she said. “And Tim, my husband - my fiancé at the time - took me to the E.R. and they did like $15,000 worth of tests and said everything was fine.”

Scahill's family physician eventually diagnosed her with Mono, but the diagnosis didn’t feel right to her. After researching online, and at the urging of online message boards, she asked her doctor to test her for Lyme disease. It was positive.

“It was a relief,” she said, “because I was going five months not knowing what was wrong.

"There were days I thought I was dying,” she continued. “Having all these symptoms out of nowhere where I can barely function… I could barely get up to get a glass of water.”

Lyme disease is a rarity in Nebraska, and those who’ve contracted it say they find diagnosis, understanding and treatment hard to come by.

According to the Centers for Disease Control, Lyme disease was contracted by an estimated 30,000 to 35,000 Americans last year. Transmitted by tick bites, Lyme disease is the most commonly reported insect-borne illness in the United States. Initial symptoms can range from headaches to joint pain. A signature large bull’s-eye rash sometimes develops at the area of the bite. Left untreated, Lyme can lead to neurological problems, arthritis, heart irregularities and cognitive issues.

But contracting the disease in Nebraska is highly unlikely. According to the CDC, there were only seven confirmed cases in the state last year. Most reported cases of Lyme occur when patients have been traveling in the northeast and upper Midwest, but cases have been reported all along the coastal areas of the United States. Scahill says she’s not exactly sure when she was infected, possibly on a trip to Texas.

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Dr. Trevor Van Schooneveld, associate professor of infectious disease at the University of Nebraska Medical Center

Dr. Trevor Van Schooneveld is an associate professor of infectious disease at the University of Nebraska Medical Center. He says Lyme disease, once diagnosed, can be cured entirely. Once the initial lesion is treated, he said, a course of oral antibiotics over 10 days or two weeks will finish the job.

“No problems after that,” he said. Van Schooneveld said the secondary types of infections also associated with Lyme disease, such as heart problems, arthritis and neurological damage, can also be cured with a two-week course of antibiotics.

But that’s where the disagreement comes in. Scahill says a lot of doctors are “uneducated” about the seriousness of Lyme and co-infections, particularly in Nebraska. She says the disease lingers long after it’s supposedly cured, and doctors don’t recognize Lyme disease is a chronic illness.

“My family doctor only gave me three weeks of antibiotics and I’m still deathly ill,” she said. “How do you explain that?

“And all the hundreds of people I’ve met and chat with everyday, they’ve lost their homes and jobs and lives because of this. And mainstream doctors just say, ‘It’s cured,’ but why are they so sick?”

Van Schooneveld counts himself in that group. He says the medical community has found no evidence Lyme persists after successful treatment.

“People who have an infection that’s treated, there’s no evidence that this chronic Lyme disease exists,” he said. “There are some practitioners out there who believe that this exists and treat it with long courses of IV antibiotics. The literature has shown no benefit to doing that, and in fact in a couple of large studies the NIH (National Institute of Health) did they actually had harm.”

Van Schooneveld said one death was reported from that treatment.

Scahill also has multiple co-infections, which are commonly reported by those with the disease. Her immune system is ravaged, and she takes up to 50 pills a day, mostly vitamins. Scahill found a homeopathic doctor in Omaha, but couldn’t afford further treatment. But she insists chronic illness is real, and she’s not alone in that belief. In the 2009 documentary “Under Our Skin,” Lyme disease sufferers tell stories about the doubt cast on their chronic illness.

But Van Schooneveld disagrees, and so does the CDC. Von Schooneveld said placebo pills, rather than long-term antibiotic treatment, have a better effect on treating chronic illness with objective results reported by both patients and their lab results.

“The placebo effect is about 40 percent effective,” he said. “If you give people a sugar pill, 40 percent will get better, they think it’s real medicine.”

(Editor’s Note: Dr. Van Schooneveld contacted KVNO News after this story aired with a clarification on his comments regarding placebos. Van Schooneveld said he would like to make clear that placebos are not used to treat chronic Lyme disease. He added when he treats patients, he always acknowledges that they have real symptoms. But if laboratory tests do not show signs of infection, then he would not recommend antibiotics as those could actually do harm.)

Scahill has networked with other chronic Lyme disease sufferers in Nebraska. She says they all feel like they’re fighting an uphill battle and sometimes feel dismissed by the medical community. After having trouble finding a doctor in Nebraska who specializes in the treatment of Lyme disease, Scahill now sees a physician in Iowa and she will soon see a Lyme specialist in Washington D.C.

Since her diagnosis, Scahill said her life has taken a turn she was unprepared for. She and her husband moved up their wedding date to last month, worrying about Lynden’s ability to make it through a wedding next spring. On Memorial Day weekend, their Lincoln apartment burned down, killing two of their pets and burning her wedding dress.

“It’s been really tough,” she said. “My life has changed a lot.

“I feel like I’m a totally different person, just kind of finding out what the important things in life are, not taking anything for granted.”


Interview from documentary "Under Our Skin":

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