HEADLINE | Tick-Borne Illness
Holly Ahern wasn’t surprised to get a frantic call last month from parents at an Albany hospital, desperate to do something for their son, whom they described as borderline comatose, with symptoms of brain swelling.
Their son had previously had a confirmed, acute case of Lyme, and the parents wanted doctors to try antibiotics recommended by the International Lyme and Associated Diseases Society, a nonprofit that promotes changing the standard of care, for lingering cases of the bacterial infection. The hospital’s doctors would have nothing of it. They followed guidelines from the Infectious Disease Society of America, a prominent medical group whose narrower definition of Lyme and advice on treating it is sanctioned by state and federal health officials.
“People call me because they have no idea what to do,” said Ahern, a microbiologist at SUNY Adirondack who advocates for treatment of a controversial ailment sometimes called “chronic Lyme disease.”
Opposing camps in a decades-old battle over the treatment of lingering illness following confirmed or suspected cases of Lyme disease are holding tight to their positions, despite a rise in cases that should perhaps sound an alarm for common ground or at least open minds. Federal health officials estimate 300,000 people are diagnosed with the illness each year. Most of them are in the Northeast and Midwest. “I really feel for the patients, who are caught in the middle of this,” said Sean Philpott-Jones, director of the bioethics program at Clarkson University and the Icahn School of Medicine at Mount Sinai.
Dr. Ronald Stram of Delmar sees about 50 new patients a week who usually find him after exhausting other avenues to deal with lingering joint pain, neuropathy or even depression and anxiety. Faced with a lack of evidence about the causes for lingering infection, Stram defended his treatment of patients with unorthodox methods, like long-course antibiotics, if the treatments result in improvement.
“Ignoring this disease as being a very complex disease that manifests itself with multiple symptoms — to ignore the fact that we are an endemic epidemic region — is malpractice,” Stram said.
One big problem is that there’s little established science about Lyme symptoms that persist. Public funding for Lyme disease research has been relatively scarce. In 2015, National Institute of Health funding for Lyme research was $24 million, though it tops the list of diseases spread by insects. By comparison, West Nile virus, which infected about 2,000 Americans last year, received $40 million in funding.
Yet new findings and ideas are emerging, with research bolstered in part by private funds. Perhaps it is no surprise that the studies are often met with knee-jerk criticism by those in one camp or another. Or that the same research is sometimes even touted by each camp to support its own theory.
Ahern is frustrated over the fact that growing research and awareness of persistent symptoms of Lyme disease is not translating into improved treatment.
“They’re really in an untenable position,” Philpott-Jones said of patients, “either of having to adhere to the conventional medical wisdom, which maybe isn’t effective, or they may find themselves having to undergo rather alternative and unproven medical therapies that can put them at increased risk of harm.
“It really becomes an individual decision for the patient and the physician and their family, and a very difficult one to make.”
Read the complete article by Times Union Health Reporter Claire Hughes.
Interview with Congressman Chris Gibson on Lyme Disease as seen on Health Link
AROUND THE REGION
Be Tick Free A Guide for preventing Lyme Disease from the New York State Department of Health
Tick Borne Diseases in the Hudson Valley: The Ecology of Risk – Cary Institute of Ecosystem Studies
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