December 7, 2007 Time for Lyme and the Lyme Disease Association have finalized an agreement with the Neurology Research Foundation (NRF) to support a research project to examine dysautonomia, a devastating and sometimes life-threatening neurological disorder, in Lyme disease.
The study will be led by the NRF’s senior investigator, Dr. David S. Younger, MD. — a leading authority in the field of neurology research who has participated in and authored more than 100 published studies and peer-review journal articles on neurological disorders. The investigation will involve the recruitment of a large cohort of patients with early and chronic Lyme disease of the nervous system, also known as Lyme neuroborreliosis over four years, with the majority of the advocacy groups’ funding to be used on the purchase of necessary equipment to support the study. In a preliminary abstract submitted to the American Academy of Neurology for publication, Dr. Younger and colleagues noted the development of dysautonomia among those so studied with early and chronic Lyme disease using the strictest of criteria for case selection of the Center for Disease Control (CDC) and New York State (NYS). The investigators concluded that dysautonomia may be underestimated and under diagnosed in all stages of Lyme neuroborreliosis.
“Time for Lyme is pleased to support this scientific investigation by such a respected organization as the Neurology Research Foundation,” explains Diane Blanchard, co-founder and president of Time for Lyme. “We are galvanized by their support, as well as the support of the Lyme Disease Association, in our hope that this study will bring us closer to understanding and treating dysautonomia in chronic Lyme disease patients,” Blanchard adds.
Difficulties of Dysautonomia
The autonomic nervous system is a complex, fragile and crucial system that regulates all automatic bodily functions, including respiration, heart rate, blood pressure, digestion and kidney function, among others. It is one of the main branches of the nervous system that is frequently affected in late-stage chronic Lyme disease, causing dysautonomia. According to the American Dysautonomia Institute, symptoms of the disorder include fainting, extremely low blood pressure (hypotension), light-headedness, dizziness, problems concentrating, headaches, fatigue, heart palpitations, digestive problems, exercise intolerance, insomnia, hot flashes, chills, weakness, seizures, pain, and disability.
Dysautonomia is not only a manifestation of Lyme disease. In fact, it is estimated that as many as 3 million Americans are afflicted with dysautonomia, and there are potential treatments and cures especially when recognized early and treated aggressively. “This disorder robs millions of people of their quality of life, and endangers their health and well-being on a daily basis,” notes Debbie Siciliano, co-founder of Time for Lyme. “Our organization is gratified to participate in the collection of critical scientific data that not only will help chronic Lyme disease patients, but may also benefit dysautonomia sufferers in general,” Siciliano concludes.
Time for Lyme has become a particularly proactive force in the area of chronic Lyme disease research this year. “Chronic Lyme disease is all-too real for the many thousands of patients who are living with its symptoms,” Blanchard explains. “With the support of top-notch scientists like Dr. Younger among so many others, we are able to hope for a better understanding of this insidious disease and, ultimately, a cure.”
About Time for Lyme
Time for Lyme is an organization dedicated to eliminating the devastating effects of Lyme disease and other tick-borne illness. Our mission is to prevent the spread of disease, develop definitive diagnostic tools and effective treatments, and to ultimately find a cure for tick-borne illness by supporting research, education, and the acquisition and dissemination of information. In addition, we will continue to act as advocates for Lyme disease sufferers and their families through support of legislative reform on the federal, state and local levels. For more information on our organization, please visit www.timeforlyme.org.
About the Neurology Research Foundation
The Neurology Research Foundation (NRF), a 501 (C) 3 public foundation, was founded in 1995 out of a compassionate desire to help the many individuals who suffer from debilitating and fatal neuromuscular disorders.
Our mission is to advance progress toward cure and prevention of neuromuscular disorders by providing support for promising research projects, as well as the assistance of patients, their families, and caregivers in coping with neuromuscular diseases by fostering support groups, lectures, seminars, and other participatory forums.
For more information on our organization, please visit www.neurologyresearch.org.