Lawmakers to discuss growing Lyme disease problem in Vermont
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By Mel Huff Times Argus Staff - Published: January 13, 2009
People whose lives have been affected by Lyme disease, as well as their family and friends, will talk to their legislators today about how the tick-borne illness has affected them and their loved ones.
Their message: The state's effort is inadequate and doesn't address a growing incidence of Lyme disease cases, which more than doubled in Vermont between 2007 and 2008.
The Vermont Lyme Network, an advocacy organization, support group and information resource for patients with Lyme disease and other tick-borne illnesses, is sponsoring a legislative awareness session at the Statehouse cafeteria 7-11 a.m.
"Unfortunately, the problem of tick-borne diseases continues to increase alarmingly, while the strategies to address them remain just as alarmingly unfocused," Ellen Read, an organizer of the event, said in a written statement. "Although we are as aware as anyone of the scarcity of funds maybe more so, since a number of (Lyme patients) involved have been forced onto disability we feel much can be done to coordinate and direct efforts to combat the sharp rise in the number of cases Vermont is experiencing."The Vermont Lyme Network is developing a bill to be introduced later in this legislative session by Rep. Richard Howrigan, D-Fairfield, and Alison Clarkson, D-Woodstock. Its goals will be to institute better tick surveillance and testing, improve public outreach, increase physician education and coordinate the activities of various state agencies.
"Perhaps we can sit down and make the puzzle pieces fit better without spending much money, if any," Read said. "We could get a group of people together, perhaps from the Department of Health, perhaps from Agriculture, Forest and Parks, consumers, medical to sit down and say, 'Well, look. Let's look at the problem from all these angles at once and see what makes the most sense.'"
For example, the participants could strategize where to test if money becomes available from the economic stimulus plan.
According to the Centers for Disease Control and Prevention, "Lyme disease is the most commonly reported vector-borne illness in the United States. From 1992 to 2006, the number of reported cases more than doubled."
Lyme disease is spread through the bite of black-legged (deer) ticks that are infected with the Borrelia burgdorferi bacterium. It has been found in every county in Vermont, says Department of Health epidemiologist Patsy Kelso.
Not everyone who has been bitten by a tick is aware of the fact, and even people who develop a rash from the bite of an infected tick don't always recognize it as a symptom of Lyme disease. If the infection is not treated promptly, the consequences can be devastating.
In an October report, the CDC noted that "within days or weeks, untreated infection can spread to other parts of the body, causing more serious neurologic conditions or cardiac abnormalities, CDC surveillance statistics released in October show a sharp rise in Vermont cases over the past five years. The Vermont rate more than doubled between 2004 and 2006.
"What you're seeing
is probably a couple of things increased awareness, providers doing more testing and reporting and also more Lyme disease," Kelso said.
There were 105 confirmed cases in Vermont in 2006 and 138 in 2007. Last year produced another doubling. Preliminary data for 2008 show 324 confirmed cases, plus 71 probable cases and 12 suspect cases. (The "probable" and "suspect" cases reflect new CDC reporting categories.)
Although the CDC provides specific funding for surveillance of West Nile virus, it allocates none for Lyme disease, Kelso said. (Only two instances of West Nile virus were found in Vermont in 2008, one in an Addison County mosquito pool and one in a dead Chittenden County bird. Since 2002, there have been four cases of West Nile virus in humans, one in 2002 and three in 2003, according to state surveillance data.) "In fact, we don't have any specific funding from the state for Lyme surveillance, either," Kelso said. "We use our existing staff funded through various means to conduct Lyme surveillance. Some of that staff time is funded through general funds from the state, and some of it's funded by other CDC grants."
Surveillance of human Lyme disease cases "takes up an awful lot of time," she said. "We're getting more and more cases reported. We often get several laboratory reports for the same individual, so it's very time-consuming to compile the reports, contact providers and in some cases, the patients themselves to get information about symptoms they might have had, to see if they meet the case definition, to see if they've traveled outside Vermont so we can attribute their Lyme disease to an indigenous or imported exposure."
At present, the department is able to handle Lyme disease reporting with existing resources, she said, although she added that the increasing numbers are making the necessary follow-up more difficult.
While she would like to have additional staff to devote to surveillance of the disease, she identified an even more critical lack.
"What we don't have in Vermont is much data at all about tick populations that can spread Lyme and the prevalence of the Lyme disease bacteria in ticks in Vermont that type of information would be really useful," Kelso said.
If 'hot spots' could be identified local areas with a high population of infected deer ticks then strategies for controlling them could be developed, she said.
One such 'hot spot' was identified in 2004, said Jon Turmel, the state entomologist: "We did a survey on Butler Island and 49 percent of the ticks had Lyme disease." No surveys have been done since then. "There's no money for tick surveillance."
"Our primary objective right now is education," said Turmel. "People will send us samples, and we can tell them if it's a deer tick or not, but we don't test them here.
"We can," noted Turmel, whose office is in the Agency of Agriculture. "We have the capabilities, but we don't have the resources."
Meanwhile, Stephen Bent, a postdoctoral associate from the Yale School of Public Health, has been collecting Vermont deer ticks in the nymph stage as part of a regional study. Following tips from Hanson, he "ended up with some really high numbers in select areas," Hanson noted.
In 2007, he found 32 nymphs in a survey area on Grand Isle, four of which were infected with Lyme bacteria. Butler Island in Lake Champlain in a 2008 test had one of the highest numbers of infected ticks.
Read, a registered nurse, has a personal interest in improving the diagnosis and treatment of Lyme disease. In 2002, she was bitten by a tick while she was picking blackberries at her home in St. Albans.
"We look right out over the lake. As the crow flies, it's probably 13 or 14 miles to Butler Island," she notes. Butler Island is the epicenter of Lyme in Vermont.
Read noticed the rash, but it didn't itch or hurt, so she assumed it was a bruise. Her husband agreed that it didn't look like the classic bulls-eye rash of Lyme disease. They left on vacation. When they returned home five weeks later, Read went to her local doctor.
"It was a very gradual process to getting to the point where I sought help. Over those five weeks, little things kept happening that I would dismiss," she says. Read warns people who have been bitten by a tick not to wait to see whether they get sick before seeing a doctor. By dismissing little things that kept going wrong after she was bitten, Read ended not being able to function. "I thought I had a brain tumor or MS or a stroke," she says.
Her doctor put her on the standard four-week regimen of antibiotics and she got better temporarily. But within another five weeks, she says, "I was unable to count to three, was unable to take a pulse. I was literally immobilized. It had gone to the neurologic form. My long-term and short-term memory and working memory were gone for quite a long time. It took a long time for my brain to heal."
In 2007, Read was bitten again, this time, in the fall. "The second time, I was terribly sick. Terribly sick. Much sicker than I was the first time."
Notwithstanding concerns abut the overuse of antibiotics, Read argues that when patients arrive at the doctor's office with an engorged tick attached, they should immediately be started on antibiotics.
"By the time you test the tick and you get the results back, your window of opportunity is gone," she says. "If you wait to test blood for an antigen response, you're also past that window of opportunity. So the choice is, do I treat prophylactically by what I see, or do I wait until this person gets sick and start treating them and hope the horse isn't out of the barn and down the road. Ten dollars worth of doxycycline beats thousands of dollars later on," she insists.
As Read sees it, the cost of inadequate surveillance is paid by the victims of Lyme disease. "If I could pick one of 15 people I have met who have been ill for years, and if you could take the money spent on testing them and put that into testing ticks, we wouldn't be asking the Legislature for money. I know people who have spent $25,000 or $30,000 out of their own pocket just on testing and trying to find out what is wrong. That would test a lot of ticks."
Read's doing well now, after being on antibiotics for months at a time. She went back to work this week for the first time in months.
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