Rallies to raise awareness of Lyme disease, challenge CDC treatment guidelines
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Chronic Lyme sufferer dies: Vicki Logan, 53, died in 2003 from what her autopsy called chronic Lyme disease with brain inflammation. Her physician, Dr. Kenneth Liegner of Pawling, said she was helped by antibiotic treatments but her insurer declined to cover them.
This macro photo iilustration of a deer tick found in early December and barely clinging to life is shown resting on a worn penny. The head of the tick is located at the left. / Spencer Ainsley/Poughkeepsie Journal
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Dr. Kenneth Liegner believes that Vicki Logan didn’t have to die in 2003 after suffering for 16 years with Lyme disease.
That is why the Pawling internist will be rallying with other area residents in Union Square Park in Manhattan on Friday as part of the first annual Worldwide Lyme Disease Awareness Day. A second rally will take place in Albany’s West Capitol Park, among events in 28 countries and 29 states, organizers say.
Billed also as a protest, the event hopes to draw attention to several issues, including under-reporting of Lyme disease; treatment guidelines that — wrongly, organizers believe — limit antibiotic doses to 28 days; and the existence of so-called chronic Lyme disease, a diagnosis that health authorities largely reject.
Liegner will tell Logan’s story at the rally as an example of a Lyme patient for whom the treatment guidelines failed.
“People argue that Vicki is an exception,” said Liegner, whose patients come from other states because they often cannot find care on their own. “That’s not true.”
Logan, a pediatric ICU nurse who lived in Westchester County, had an advanced case of Lyme when she was treated with antibiotics in 1989, Liegner said. When symptoms returned a year later, a lab test ordered by Liegner found live Lyme bacteria in Logan’s spinal fluid — proof, he believed, that the pathogen had survived antibiotic treatment. Though additional treatments afterward largely improved Logan’s health, Liegner said her insurer declined to pay for further care.
She died at age 53, recording a video on her battle with Lyme disease, part of which can be seen at www.poughkeepsiejournal.com, and giving Liegner permission to use her as a case study. Her autopsy listed her primary diagnosis as chronic Lyme disease with chronic meningoencephalitis, or brain inflammation. She also suffered a heart attack.
CDC: 'Dangerous'
Officials at the U.S. Centers for Disease Control and Prevention oppose long-term antibiotic treatment for Lyme disease, contending that major clinical studies have shown no benefit.
The use of experimental therapies, that are unproven and potentially life-threatening, and the overuse of antibiotics are both dangerous and leads to the emergence of antimicrobial resistance,” Charles “Ben” Beard, chief of the bacterial diseases branch in the division of vector-borne diseases, wrote in a statement for the Journal.
The protests, starting at noon in Manhattan and at 11 a.m. in Albany, will feature speakers on Lyme issues — physicians, practitioners, patients, authors and leaders in the Lyme community.
“This is not just a local issue. This is a worldwide issue,” said Jill Auerbach, chairperson of the Hudson Valley Lyme Disease Association. “In the United States, there are tens of thousands of people with Lyme and tick-borne disease — and that’s just the tip of the iceberg.”
Auerbach, a Town of LaGrange resident who will speak at the Union Square rally, became an activist after she was diagnosed with advanced Lyme disease in 1993. She underwent eight months of oral antibiotics and seven weeks of intravenous treatment — far more than the treatment guidelines allow — and achieved 90 percent improvement, she said.
“We’ve really got to make our numbers shown,” Auerbach said of the rally. “We’ve got to get people out there, put this on the map, make the government pay attention to us.”
Liegner hopes the rally will shed light on chronic Lyme, an infection he said has gone unaddressed by the federal government, despite well-documented cases like Logan’s.
“I feel an obligation to Vicki to use education to force the issue,” Liegner said. “She still had a serious illness, but she could have had a better quality of life.”
Lyme activists first began coordinating the event through Facebook, and the idea quickly went global. A rally will be held outside of Parliament in Norway, while in Canberra, Australia, Telstra Tower and other national landmarks will be lit up in symbolic “Lyme” green for the day. In Germany, a Lyme organization will present an open letter to the health minister, demanding improvement in Lyme treatment, and petitions for better care will be presented in Belgium, Denmark, the United Kingdom and South Africa. Supporters are encouraged to change their Facebook profile pictures to an icon that can be found on the event website reading, “Lyme Lives Here,” paired with their nation’s flag.
In her consent to Liegner, Logan wrote that her “ultimate goal” was to see that people with Lyme disease are “treated with the best presently available means at the disposal of medical science.”
