Debate over Lyme disease in Nebraska: Chronic or curable?

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October 4th, 2012

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

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“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.

The characteristic “bull’s-eye” reaction to a tick bite. (Photo courtesy of the U.S. Centers for Disease Control and Prevention)

“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.”

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

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 said she’s not exactly sure when she was infected, possibly on a trip to Texas.

Lyme disease is rare in Nebraska, but is more densely found in the Northeast and South. (Graphic courtesy CDC) Click to enlarge.

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?

Dr. Trevor Van Schooneveld, associate professor of infectious disease at the University of Nebraska Medical Center (Photo courtesy UNMC)

“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.

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.

“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.”

Scahill has networked with other chronic Lyme disease sufferers in Nebraska. She said 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.”

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 the long term use of antibiotics as those could actually do harm.

3 Responses

  1. I am from Nebraska and have been infected and suffering since 1992 though I was probably bitten before then at some point in our woods by the Platte River. Dr. Van Schooneveld’s contribution to this article is as dogmatic, myopic, and ignorant as the CDC’s “guidelines” are. To quote the effects of placebos in relationship to chronic disease is not only in bad taste, it is hurtful to those of us who suffer for so long with no answers. One final question doctor, do people taking long term antibiotics for acne die? I call shenanigans!

    -A Nebraskan Lyme Sufferer

  2. GoogleUser says:

    Lyme Disease isn’t unknown in Nebraska or anywhere else in the United States – it’s under-reported. CDC and NIH doctors are wrong – you *can* have Lyme longer than a month. It doesn’t really matter what you call it in that case – Post Lyme Syndrome, Chronic Lyme, Long-term Lyme – you’ve still got it. The reason for persistence is that there are 3 life cycles for the bacteria: Active (Spirochete), Cyst (hides in the body’s tissues/joints/blood, etc.) or L-Wall/L-Form/Biofilm (coats itself with the body’s own proteins, camouflaging it).

    There are no tests to say which life cycle your Borrelia Burdorgferii (Lyme disease bacteria) are in, so no sure way to say you’re cured, even with (a paltry) 2 weeks of antibiotics (ABX). The tests that *do* exist, ELISA, Western Blot (IgA, IgG, IgM), and PC (whole blood and serum) get a lot of false negatives (and sometimes positives, too, when done by themselves. And depending on when you get tested, you might get a different result each time, due to the bacteria’s life cycle, which is hard to pinpoint.

    Not a lot of doctors know that you need to have all three types done at the same time – to get the whole picture, either. And then, even if you *do* test positive for a few bands of Lyme Disease, the CDC says you have to have a total of 5, even though having Lyme disease is like being pregnant in that you either are or you aren’t. You can’t *kind-of* be pregnant; you can’t *kind-of* have Lyme. Or anything else for that matter, like Cancer, Syphilis, COPD, etc.

    To add to the confusion, there are so many species and subspecies of the Lyme Disease bacteria that it’s impossible to figure out which treatment combination works all the time for each one. Also, nobody responds the same way to every antibiotic or combination of antibiotics. AND, there is *no* single over-arching treatment plan for those that have Lyme longer than a month, because the CDC says that can’t happen.

    AND, doctors who try to treat Lyme with long-term ABX often get prosecuted by insurance companies and pharmaceutical companies for prescribing treatments that are *not medically necessary*. According to them. And despite whether the patient actually feels better or not. Despite the doctor-client relationship, which is supposed to be sacrosanct and not able to be contested. And a private matter between doctor and patient.

    The codicil to this is that it *can* be cured, but only if you’re diagnosed and treated within a month. However, if, like many of us, you do not get correctly diagnosed right away, it’s longer, harder, and more expensive to treat – just like any illness that can be long-term, like Cancer, Lymphoma, COPD, Lung Disease, Kidney disease, etc.

    I’ve been treating my Lyme for almost four years now, and I can tell you from personal experience that I’m better on the ABX than off AND, if I would have listened to doctors who follow the CDC’s protocols only, I would be dead by now. AND, I know a lot of folks who are in my same situation.

    What I don’t know and don’t understand is why the CDC and NIH continue to follow these dangerously outdated protocols, and publish dangerously outdated information like the folderol they’re spewing in this article. There’s loads of evidence from reputable sources that prove that yes, you *can* have Lyme longer than a month; and yes, it *-does* turn your life upside down; and yes, you *can* actually die from Lyme if it’s not treated properly. And no, 2 weeks of ABX is actually *not* long enough for treatment, because the life cycle – with its 3 forms -is actually 8 weeks.

    But the big question is, if I know these things as a layperson (and so does everyone else in my Lyme support group; AND there are many groups like ours all over the country), why doesn’t the CDC and NIH?

    By the way, that *map* is hopelessly outdated – that’s 2008 numbers it’s showing. Look here for current numbers: http://www.aldf.com/usmap.shtml

    – A Virginia Lyme Sufferer

  3. GoogleUser says:

    Sorry, just realized the link I posted showed a map with 2006 data – not very current or helpful. This one below is 2012 numbers; and is easier to interpret ( I think).

    http://commonhealth.wbur.org/2012/02/ultimate-lyme-disease-map

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