Katy Reid said some young adults suffering with Lyme disease no longer aspire to marriage, having children or even holding fulfilling jobs because of the ailment's crippling effects.
Reid, 27, of Ridgefield, runs a weekly support group for Lyme disease sufferers aged 16 to 30, drawing young adults from as far away as New Jersey and upstate New York.
"Young adults sit around the table once a month, and devoid of emotion, discuss how they will not date, marry, or have children as a chronic Lyme disease patient," Reid said. "Seventeen- or 18-year-old girls have made the choice not to have children rather than risk the possibility of bringing a child into the world with a tick-borne illness."
Reid told U.S. Sen. Richard Blumenthal, D-Conn., during a hearing Thursday at the University of Connecticut Stamford that 11 years ago, she and her family battled with doctors who prescribed inappropriate treatments in the face of arguments that her fever, bouts of fatigue, mental lethargy and other symptoms were attributable to Lyme disease.
A doctor eventually diagnosed her with the disease in 2002.
"I didn't have to be sick for over 11 years," Reid said. "Without a Lyme-literate doctor's courage, I would not be standing here to tell my story."
Reid and with other Lyme patients and prominent state-based researchers of the tick-borne illness told Blumenthal and a crowd at the hearing that the need for a reliable diagnostic test for Lyme disease and research into new treatments is becoming more imperative as the disease begins to spread nationwide.
In May, findings of a study published in the Journal of the Proceedings of the National Academy of Sciences found the number of Lyme disease cases continued to surge across Northeastern and Midwestern states although the population of deer, which serve as a dominant host for the ticks that carry the disease, has stayed more or less level.
U.S. Sen. Kristen Gillibrand, D-N.Y., and Blumenthal are co-sponsoring legislation that would establish a federal advisory committee on Lyme issues, consider a uniform reporting system and boost educational and research efforts to limit the disease spread's and better treat patients.
Gillibrand said Thursday the continued lack of a reliable test for Lyme disease has left many cases undetected and hampered efforts to track its spread.
"The time has truly come for us to join together and take strong action to eradicate tick-borne diseases and stop the needless suffering of so many in New York, and families around the country," Gillibrand said.
Kirby Stafford, an entomologist for the Connecticut Agricultural Experiment Station, testified that without a vaccine, public outreach efforts seem best focused on education and prevention as well as limiting ticks in the environment.
Stafford said the federal government can play a key role by financing further research that would establish a test and resolve dispute over whether Lyme disease can be a chronic condition.
"When Lyme builds up, the government tends to put up a lot of resources and then when the numbers of cases decline, it drops off," Stafford said. "The government could do a lot of good by investing proactively instead of reactively to determine the scope of the impact."
Dwight Harris, 64, of Burlington, said he believes his Lyme disease dates to 1994, though the initial test was negative.
Harris said it took 14 years of erosion of physical and mental capabilities before he connected with a "Lyme-literate" doctor who diagnosed him with chronic Lyme disease and helped him recover with a long-term course of antibiotics.
After his testimony, Harris said he has also benefited from non-mainstream treatment using a rife machine, a device that uses electronic current, to, some sufferers believe, disrupt disease-causing spirochetes.
"At this point in time, I am well and productive much of the week and I savor the relief I have and the productive life I am leading compared to 10 years of almost complete incapacity," Harris said.
Blumenthal said moving the legislation forward during the current session of Congress is unlikely, but outreach efforts around the bill have helped focus attention on the clash between patients who have debilitating Lyme-like symptoms and members of the medical establishment who dismiss the idea of chronic Lyme disease.
"This is very powerful and compelling evidence of the need for better diagnostic tools," Blumenthal said. "The suffering, anxiety, pain, and the loss of productivity should help drive and embolden the push for legislation."
Medical authorities and the federal Centers for Disease Control advocate against long-term antibiotic treatment for Lyme disease; symptoms persisting beyond two to four weeks are generally viewed as likely due to non-Lyme related causes.
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