Debate over Lyme disease in Nebraska: Chronic or curable?
October 4th, 2012
Omaha, NE – Lyme disease is a rarity in Nebraska and those whoâ€™ve contracted it say they find diagnosis, understanding and treatment hard to come by in the state.
â€œOne day, all of a sudden, I woke up and I just couldnâ€™t even get out of bed,â€ said Lynden Scahill of Lincoln, Neb. â€œI got out of bed finally and just fell on the floor, and I was passing out.â€
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 didnâ€™t know why.
â€œI was basically bed-ridden for a few days,â€ she said. â€œAnd Tim, my husband – my fiancÃ© at the time – took me to the E.R. and they did like $15,000 worth of tests and said everything was fine.â€
Scahill’s family physician eventually diagnosed her with Mono, but the diagnosis didnâ€™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.
â€œIt was a relief,â€ she said, â€œbecause I was going five months not knowing what was wrong.
“There were days I thought I was dying,â€ she continued. â€œHaving all these symptoms out of nowhere where I can barely functionâ€¦ I could barely get up to get a glass of water.â€
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 bullâ€™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 said sheâ€™s not exactly sure when she was infected, possibly on a trip to Texas.
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.
â€œNo problems after that,â€ 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 thatâ€™s where the disagreement comes in. Scahill says a lot of doctors are â€œuneducatedâ€ about the seriousness of Lyme and co-infections, particularly in Nebraska. She says the disease lingers long after itâ€™s supposedly cured, and doctors donâ€™t recognize Lyme disease is a chronic illness.
â€œMy family doctor only gave me three weeks of antibiotics and Iâ€™m still deathly ill,â€ she said. â€œHow do you explain that?
â€œAnd all the hundreds of people Iâ€™ve met and chat with everyday, theyâ€™ve lost their homes and jobs and lives because of this. And mainstream doctors just say, â€˜Itâ€™s cured,â€™ but why are they so sick?â€
Van Schooneveld counts himself in that group. He says the medical community has found no evidence Lyme persists after successful treatment.
â€œPeople who have an infection thatâ€™s treated, thereâ€™s no evidence that this chronic Lyme disease exists,â€ he said. â€œThere 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.â€
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 couldnâ€™t afford further treatment. But she insists chronic illness is real, and sheâ€™s not alone in that belief. In the 2009 documentary â€œUnder Our Skin,â€ Lyme disease sufferers tell stories about the doubt cast on their chronic illness.
An interview from the 2009 documentary “Under Our Skin”
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.
â€œThe placebo effect is about 40 percent effective,â€ he said. â€œIf you give people a sugar pill, 40 percent will get better, they think itâ€™s real medicine.â€
Scahill has networked with other chronic Lyme disease sufferers in Nebraska. She said they all feel like theyâ€™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 Lyndenâ€™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.
â€œItâ€™s been really tough,â€ she said. â€œMy life has changed a lot.
â€œI feel like Iâ€™m a totally different person, just kind of finding out what the important things in life are, not taking anything for granted.â€
Editorâ€™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 the long term use of antibiotics as those could actually do harm.