Study to test link between Lyme disease and other disorders
By Michael Dinan Staff Writer
December 16, 2007
Challenged by recent reports that there's no such thing as "chronic" Lyme disease, Greenwich advocates are trying to show that the illness can cause a severe neurological disorder that's already associated with proven long-term problems such as diabetes.
By proving that the tick-borne illness can trigger dysautonomia, advocates hope to show that what they call "late" or antibiotic-resistant Lyme disease must be identified as a real problem by the medical community and that better diagnostic and treatment methods need to be developed.
"People develop dysautonomia when they have other primary conditions, such as diabetes and other diseases, and essentially what we're trying to prove is that Lyme is another primary condition that can lead to it," said Diane Blanchard, co-president of Time for Lyme, a Greenwich nonprofit organization that's affiliated with the Lyme Disease Association, both of which advocate for better research into and treatment of the disease.
"What we're saying here is that people absolutely can develop this chronic (Lyme disease) condition. The question is: Are they developing chronic secondary diseases and disorders in addition to being chronically sick with Lyme?" Blanchard said.
Time For Lyme is contributing about $300,000 toward a three-year study to be led by Dr. David Younger, a senior investigator from the Neurology Research Foundation. Younger also serves as chairman of neuromuscular diseases at the New York University Medical Center and St. Vincent's Catholic Medical Center. The study will cost about $1.5 million, Younger said.
Dysautonomia is a disorder of the so-called "autonomic nervous system" that controls all automatic body functions, such as blood pressure, heart rate, temperature control, and vascular activity. The disorder can cause fainting, dizziness, seizures, insomnia, hot flashes and dangerously low blood pressure.
According to Younger, dysautonomia already is associated with diabetes, Parkinson's disease and other central and peripheral nervous system disorders. Younger recently completed a nine-month study of two groups of 25 Lyme patients, in which two patients from one of the groups showed symptoms of dysautonomia -- one with "early" or newly contracted Lyme and another with late Lyme.
The finding means that the nervous system appears to be vulnerable at both the early and later stages of Lyme disease. That could mean that dysautonomia is connected to Lyme disease itself and not a disorder that develops separately from the disease, Younger said. The study will set out to prove just that, he said.
"That would appear to be a small number, two out of 25, but the importance of those results were that they both resembled each other, even though you would assume they would have a different pathology," Younger said.
The study will involve patients with both early and late Lyme disease, Younger said.
An illness endemic to southwestern Connecticut, Lyme disease is caused by the bacteria Borrelia burgdorferi and may bring on depression, dementia, loss of reflexes, muscle aches and blurred vision. Humans contract the disease from infected ticks.
According to the state Department of Public Health, 355 new cases were reported in Fairfield County in 2006 -- a figure that advocates say is too small and belies undiagnosed cases and flawed reporting methods.
Though most physicians and advocates say early Lyme disease is best treated by antibiotics, there is disagreement over how the disease emerges, how it should be diagnosed and whether there is such a thing as chronic Lyme disease.
A study published in the New England Journal of Medicine in October found that there's no scientific evidence to link a persistent Borrelia burgdorferi infection to what is known as chronic Lyme disease.
For Time for Lyme co-president Debbie Siciliano, it's frustrating when the medical community appears to downplay the effects of elusive, persistent cases of Lyme disease.
"Some people feel they know everything they need to know about Lyme disease and as a patient and patient advocate that's very frustrating, because we don't even have an accurate diagnostic test," Siciliano said.
For Blanchard, a study that directly links Lyme disease to dysautonomia may be the first small step toward getting wider recognition for the seriousness of the illness.
"All we're asking is: Can Lyme disease lead to chronic conditions? You better believe it can," Blanchard said. "And this is only one of things that can occur."
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