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Please report any links that do not work...thank you Local activists attend legislative hearing on Lyme disease By:Karen Pelkey , Staff Writer 02/19/2004 VALLEY - According to one of its co-founders, the Greater Hartford Lyme Disease Support and Action Group is the only such group in the country - one that not only advocates, but makes a concrete effort to put a brighter spotlight on the tick-borne disease from which they all claim to suffer. And that's exactly what three of its members did at a recent hearing held at the Legislative Office Building in Hartford. Donna Lake of West Simsbury, Christopher Montes of Unionville (co-founder) and 12-year-old Josh Athenios of Farmington each told their stories to an audience that included Attorney General Richard Blumenthal, Commissioner of Public Health Dr. Robert Galvin, and a panel of physician and government experts. Athenios, a sixth-grader at West Woods Upper Elementary School in Farmington, was the youngest panelist to speak. He told his audience about suffering through several misdiagnoses - including an infectious diseases specialist who told him his Lyme symptoms were all in his head - before he learned why he suddenly could not walk due to intense joint pain. "I lost small patches of hair the size of quarters all over my head," said Athenios, who went through nine months of extensive treatment for Lyme before he could once again finish his schoolwork and be well enough to play with friends. One of the problems, said Montes, a psychologist who saw nine doctors before he was diagnosed with Lyme, is that blood tests for Lyme are still incredibly inaccurate. Not only do different labs have different thresholds for what qualifies as Lyme,but also, the symptoms of Lyme are often synonymous with more commonly diagnosed diseases such as multiple sclerosis and chronic fatigue syndrome. "I had every symptom of Lyme you could imagine and they just blew it off," said co-founder Randy Sykes of West Simsbury, who met Montes, who was already an active lobbyist for the disease, in 1999. It was Montes who hooked Sykes up with what he called "legitimate" doctors who gave the long-misdiagnosed Sykes his Lyme diagnosis. Unfortunately, though, said the men, once the hurdle to be diagnosed as Lyme sufferers is past, the next fight is to be recognized as patients with chronic Lyme - meaning they suffer from a disease which can't be cured with a simple 21-day regimen of antibiotics. Montes said it took him 2-1/2 years of treatment to "beat" the disease. With this in mind, the two have offered a $10,000 reward to any doctor who can prove them wrong - but so far, they've kept the money in the bank. "You think you're well and you just crash," said Montes, who added he's met Lyme victims whose symptoms are so bad they can't even brush their own teeth. After hearing many more such stories, the two men, now good friends, decided that something needed to be done. They got a space at the Farmington Community Center, and the Greater Hartford group was born. Members of all ages, races, and of both sexes joined. "Our basic premise is support and action," said Sykes. "We want the department of public health to step in and educate doctors." Sykes said toward that end, Blumenthal could not be more supportive of the group's efforts to make Lyme disease something much more than just the "disease of the month." At the recent hearing, the attorney general said there were two objectives: to eliminate the common use of excessively restrictive federal reporting criteria and to correct the underreporting of new Lyme cases in the state. (State labs are no longer required by the state health department to report diagnosed cases.) The Greater Hartford group believes such problems currently affect how much money is earmarked for Lyme research and treatment, say Sykes and Montes. "Twenty-one days of treatment ... is indeed not effective," said Lake, who received a negative blood test for Lyme last summer but all the same was told by officials from the Farmington Valley Health District - which had the tick that bit her tested - to seek immediate medical attention. "To ignore this would be a great travesty. After all, this disease is in our own backyards." The group had some support from the physicians' panel, though it was generally scarce. Of the 10 doctors on the panel, only three of them were adamant about the existence of chronic Lyme and its adverse long-term effects. "People are developing chronic cognitive problems because they're not being treated early enough," said Dr. Brian Fallon of Columbia University, which he said has studied 3,400 Lyme patients since 2000. "When someone says chronic Lyme does not exist, that really belies the evidence." One of Fallon's solutions was to devise concrete ways to control the deer population in the state, which tends to carry infected ticks to residential areas. Dr. Paul Mead, representing the Centers for Disease Control and Prevention, said the CDC does not recommend that doctors rely solely on results of a Lyme blood test to diagnose the disease. "It should maybe also not be the deciding factor for insurance decisions," said Blumenthal to scattered applause from the audience, which included dozens of Lyme sufferers who have spent thousands of dollars on treatments their plans would not cover. While no action was taken at the hearing, officials concluded that state health departments must ultimately become full-time operations in order to do thorough tick surveillance and get an accurate picture of the state's infestation rates. Potential avenues of funding in order to do so must also be explored, said Blumenthal. The attorney general, who called Lyme disease "immensely destructive and costly to the state," thanked members of the public for attending the hearing. "Obviously, your number demonstrates your interest and concern, and we're very, very pleased that all of you are here," said Blumenthal. He reminded the group that after the last such hearing, legislation was passed that extended guarantees for insurance coverage to Lyme sufferers and their families. "Your being here really makes a very powerful statement." For more information about the Greater Hartford Lyme Disease Support and Action Group, contact Christopher Montes at 673-8759 or Randy Sykes at 658-9938.