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Editor’s note: Part 1 of this 2-part series on Lyme disease focused on
Stanchfield resident Tina Kabage’s trial with the tick-borne disease, a
growing problem across East Central Minnesota.
In Part 2, writer Jon Tatting with the ECM Post Review in North Branch,
addresses the ongoing controversy over diagnosis and treatment, which
has generated action from state leaders
By Jon Tatting
ECM Post Review
To this day, Stanchfield resident Tina Kabage  remains frustrated over the politics and existing medical protocols that she claims kept her from being diagnosed and appropriately treated for chronic Lyme disease, which she contracted in the summer of 2007.
After all, 17 doctors from here to the Twin Cities to Mayo in Rochester failed to diagnose her for the tick-borne disease since she never had the signature bull’s eye rash nor a positive test—until the sixth came back positive, in April 2008, thanks to her own advocacy and an independent lab in California.
Yet Kabage is not alone in her frustrations, since she represents “an all-too-common story of a person with (the tick-borne infection) having to fight an entrenched medical community to get appropriate treatment,” as described by Monique Dubos of the Forest Lake-based Minnesota Lyme Action Support Group (MLASG).
The nonprofit is more than a support group in its mission toward promoting education for the public and healthcare professionals about Lyme disease prevention, diagnosis and treatment.
“Doctors are very reluctant to treat outside the Infectious Diseases Society of America (IDSA) guidelines, which advocate a single dose of doxycycline,” said Dubos of what some MLASG members have told her about their insurance issues.
“Add to that the experience that many Lyme patients report of having doctors refuse to consider a Lyme diagnosis or treat outside the guidelines—whether out of fear of reprisal from insurance companies via the Minnesota Board of Medical Practice, disbelief in chronic Lyme, and/or belief in the IDSA protocol—and it effectively means patients are being denied appropriate care for chronic Lyme disease,” she added.
In fact, it’s been documented that doctors in other states have faced investigations, and some have had their license revoked.
Yet the issue remains important in Minnesota, which ranked eighth in the nation, with 1,282 reported cases of Lyme disease in 2008. The Centers for Disease Control and Prevention estimates this number is 10 times greater, due to the under-reporting of known cases.
“More Lyme-aware doctors who treat according to the International Lyme And Associated Diseases Society (ILADS) protocol have told their patients they prefer not to be ‘outed’ and remain under the radar, even as their appointments with Lyme patients stack up,” added Dubos.
Contrary perspectives
In contrast, others such as those associated with IDSA, the nation’s leading infectious disease experts based in Virginia, say there is no convincing evidence showing repeated or prolonged courses of oral or intravenous (IV) antibiotics is effective or even safe for people diagnosed with “chronic” Lyme disease.
“Long-term antibiotic therapy may be dangerous and it also can lead to potentially fatal infections in the bloodstream as a result of intravenous treatment,” said Dr. Gary P. Wormser, chairman of the IDSA’s expert panel on Lyme disease, in a 2007 article found on the IDSA Web site.
Additionally, the scientific data do not support a separate diagnosis of “chronic” Lyme disease, according to the 14-member panel of infectious disease clinicians and researchers who developed the IDSA’s Clinical Practice Guidelines for Lyme Disease.
Still, another group takes a broader view, believing that clinical judgment can best determine who should be treated and in what manner.
ILADS, a professional medical and research organization out of Maryland, acknowledges the controversy—based on the evolving scientific understanding and mystery of the illness—noting arguments over diagnosis and treatment approaches will continue “until we can separate the infected from the non-infected and the cured from the uncured.”
Pressure off doctors
Though the jury remains out today whether Lyme can reach a chronic phase and long-term antibiotic therapy can be effective, a movement in response to these views is gaining momentum thanks in part to a recent decision by Minnesota’s licensing board.
According to a recent press release penned by MLASG:
By an 8-6 vote last March, the Minnesota Board of Medical Practice adopted a moratorium on investigating physicians who treat chronic Lyme with long-term antibiotics.
Stating that the science for diagnosis and treatment of chronic Lyme is unsettled, the board agreed to a five-year period in allowing science to answer unresolved questions and further educate its staff, medical coordinators and members regarding this voluntary action.
MLASG and Dr. Elizabeth Maloney spearheaded the effort to protect physicians who treat Lyme disease with long-term antibiotics.
Further, Minnesota state senators John Marty and Ray Vandeveer, and state representatives John Ward and Bob Dettmer embraced the cause, introducing legislation at the start of the 2010 legislative session. The bills would have limited the medical board’s authority to investigate complaints related to the treatment of Lyme disease.
As the bills advanced, additional negotiations produced an agreement with the MBMP and formed the basis of the MBMP’s resolution, allowing the legislation to be tabled.
With the resolution in place, doctors and patients who decide that long-term antibiotic therapy is appropriate can now choose this course of action without fear of reprisal.
“MLASG believes this resolution is the first step to increasing the number of Minnesota physicians willing to become better educated in treating the most common vector-borne disease in the country.”
Kabage today
Today, Kabage is doing much better than a year ago, but she still struggles with other conditions associated with her Lyme infection “because of being undiagnosed for so long,” she said.
“Although still challenged with minimal symptoms, I have made progress that has allowed me to gain my life back as a part-time worker, artist, wife, daughter, sister and many other roles I perform. I am living proof that I never developed the classic bull’s eye rash and that long-term antibiotic treatment in necessary for chronic Lyme,” she explained.
Prevention
“Prevention is the key to staying healthy. Nightly tick checks are a must,” urges MLASG President Brenda Morency.
Lyme disease infection can be prevented by avoiding heavily wooded areas, where ticks may live in the moist, thick underbrush. Prevention can also be achieved by:
• Applying the repellent, Permethrin, to clothing.
• Wearing light-colored clothing so ticks can be located easily and removed. Wear long sleeves and pants, tucking pant bottoms into the tops of socks.
• Removing ticks immediately when found. The tick usually must be attached to the skin at least 36 hours before the infecting bacteria (Borrelia burgdorferi) is transmitted.
For more tips and information on Lyme disease, contact the Minnesota Lyme Action Support Group by logging onto www.mlasg.com or calling 651-426-3047.
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