The creation of the state's first Lyme disease commission is all but a done deal.
A budget amendment proposing creation of a commission to study the tick-borne illness has passed both the House and Senate. The commission becomes official once Gov. Deval Patrick signs off on the state's fiscal 2012 budget, which legislators expect to take place by the end of the month. The new fiscal year begins July 1.
The commission will bring together experts in medicine, wildlife management, public health, and insect control, as well as patients and advocates, to come up with ways to prevent and treat the disease.
Local advocates for people with Lyme disease say the commission is a positive development in advancing understanding of the illness, which was controversial even before it was first recognized in 1975.
"There's hundreds of people who are sick, getting sick," and cannot find physicians who will treat them, said John Kenneway, a fisherman in Chatham.
The medical community agrees on very little when it comes to diagnosing and treating Lyme, which is named after a town in Connecticut where it first drew public notice.
The debates start right away, from how many doses of doxycycline to use in early stages to which laboratories are best for testing blood for evidence of antibodies indicating presence of the bacteria that cause Lyme disease.
Physicians disagree on whether late-stage Lyme even exists, although sufferers say it's debilitating.
Kenneway said if he had been treated properly when he became ill in 1986, his Lyme disease might have been controlled. Instead, he said, it's created havoc with his immune system and caused neurological problems, muscle pain and physical weakness, among other symptoms.
In its early stages, Lyme is more of a flulike illness, sometimes accompanied by a bull's eye rash.
Advocates say the suffering caused by the tick-borne disease is particularly acute on the Cape and Islands, which has the highest incidence of Lyme per capita in the state.
In 2009, the last year for which the state has figures, there were 4,028 newly diagnosed cases in Massachusetts, including 255 cases in Barnstable, Nantucket and Dukes counties.
It took the advocacy of state Rep. David Linsky, D-Natick, chairman of the House Committee on Post Audit and Oversight, whose son has Lyme, to make the commission a reality, Richard Sylver of East Dennis said.
"That's what it takes — somebody who has the disease or knows somebody who has the disease, to get this thing going," Sylver said.
He is a founder of the Brewster Lyme Disease Support Group.
As part of its work, the Lyme disease commission aims to educate the medical community and remove barriers to treatment.
Members of the new commission will include representatives from medical camps with opposing views of treatment and chronic care, as well as members of the Legislature and municipal health officials.
Also included will be representatives of the state Department of Public Health, the state Division of Health Care Finance and Policy, the state Laboratory Institute and the state epidemiologist.
Four other members will be patients or family members of patients and members of Lyme disease organizations from across the state.
"The more feedback from patients and those involved in the issues of Lyme and other tick-borne diseases, the better," said Joanne Creel, a Lyme sufferer and activist from Yarmouthport.
She said she hopes the commission includes representation from the Cape and Islands, which has one of the oldest Lyme disease task forces in the state.
The commission is expected to report back to the state Legislature next year.
"I think it's a step forward, pending administrative support and some funding," said Brenda Boleyn of the Cape and Islands Lyme Disease Task Force.