LymeBlog - Lakes Region Lyme Support group filling a need in New Hampshire

Lyme disease on the rise
Laconia Citizen, NH
By ERIN PLUMMER
eplummer@citizen.com

As Lyme disease reports are on the rise in New Hampshire the diagnosis of chronic Lyme disease is still controversial among doctors and support is hard to find.

It started as a rash on the top of her head and was followed by facial twitches and a host of other symptoms. Almost a year and six doctors later, Nancy Bourassa of Laconia was diagnosed with Lyme disease — a sickness state officials say is on the rise, though it often is misunderstood by the public and the medical community.

Lyme disease is a bacterial infection mostly spread through the bites of deer ticks, but it also can spread through blood, fetal, and breast milk transmission.

"We have reported earlier that the incidence of Lyme disease in New Hampshire is increasing," said Nicholas Toumpas, commissioner of the state Department of Health and Human Services, in a statement, "but the surprising finding is how pervasive the disease is. Over 50 percent of the ticks sampled in Rockingham, Strafford, and Hillsborough counties tested positive for Lyme disease."
Photo: ERIN PLUMMER/CITIZEN PHOTO

NANCY BOURASSA shows a photo of the bacteria that cause Lyme disease. A 'Lymie' herself, Bourassa helps organize a support group for those effected by the disease.
In a recently released report by the DHHS, 892 cases of Lyme were identified in the state in 2007, and 619 the year before. According to the DHHS, it is not known if the increase is due to an increased number of ticks carrying the disease or a heightened awareness among patients and clinicians, or both.

"I was shocked at the numbers," said Susan Laverack, public health coordinator for the Lakes Region Partnership for Public Health.

Receiving a positive diagnosis for Lyme disease is a difficult process, as the disease displays a variety of complex symptoms all over the body that closely mimic other diseases, such as Multiple Sclerosis, Bell's Palsy, Lou Gherig's Disease, and others.

Bourassa said that, shortly after discovering the rash, she developed a facial twitch that spread to her neck, along with other symptoms. She said her first doctor diagnosed her with Bell's Palsy, though she knew the symptoms would come and go and were not the paralysis of Bell's Palsy.

"The first specialist said, 'There's no such thing as chronic Lyme disease," Bourassa said. "I would leave their office saying, 'I know they really believe what they just told me.'"

Bourassa said many patients are told they are cured of the disease after initial treatment and any additional symptoms are called post-Lyme syndrome and the standard titer test is not always accurate.

The diagnosis of chronic Lyme disease is controversial among doctors.

Bourassa received a positive diagnosis of Lyme disease after visiting a sixth specialist, a doctor in Concord who is among the state's few Lyme Literate Doctors (known as LLMDs). Bourassa said there are only four such doctors in the state, while many Lyme sufferers she knows see doctors in places like New York.

"I had to be an advocate for myself," Bourassa said, explaining that she had met several people with the disease and found as much information as she could. When she was diagnosed, her reaction was, "I'm relieved to have an answer and have something to go on."

Bourassa conducted more research and tried to find more people in the Lakes Region affected by the disease, but found no area groups and few people on the Internet. Regularly going online is difficult due to constant fatigue and exhaustion.

Michelle O'Mara, who was diagnosed with Lyme disease three years ago, yet "probably had it for 35 to 40 years," according to Bourassa, helped her better understand the disease. After finding no support groups in the area, Bourassa and O'Mara started their own.

The first meeting of Lakes Region Lyme Support took place in February "in a blizzard" and drew eight people, including one person from the Seacoast and one from Maine. After the meeting, attendees and organizers decided to meet monthly.

People in attendance have not only been Lyme sufferers — or "Lymies" — but also have been people wanting information on the disease and a few medical professionals.

Bourassa said she invited her first doctor to one of the meetings. "Here we have a room full of people who've been told, 'You're crazy,'" she said

"We're trying to educate people in the community, the medical community, schools, they all need to hear about this," Bourassa said. "You can't be an ostrich any more. People are getting really, really sick with this."

According to the report by the DHHS, black-legged ticks, the most common carriers of Lyme disease, are common in southern New Hampshire, especially in Rockingham, Strafford, and Hillsborough counties. Such ticks are ...

less common in southwestern and mid-central New Hampshire, including Belknap and Carroll Counties, and are rare in northern New Hampshire, including Grafton County.

In the Lakes Region, the numbers of Lyme disease cases have been low, with declines in Belknap County but increases in other counties. In 2007, six new cases were reported in Belknap County where 10 cases were reported in 2006.

The number of cases in Carrol and Grafton counties remained low, though they more than doubled from last year. In Grafton County, 14 new cases were reported, compared with seven new cases in 2006. The number of new cases in Carroll County went from five in 2006 to 19 in 2007.

Fewer than five cases were reported in each of the communities of Laconia, Gilford, Meredith, Tilton, Barnstead, Moultonborough, Plymouth, Bristol, Ashland, Hebron, Tamworth, Tuftonboro, Wolfeboro, Andover and New Durham; and no cases were reported in any other Lakes Region community.

"I don't think the ticks have become rampant," Bourassa said. "People have become more educated and insist on these tests."

Bourassa attributes the increase in information about the disease and patient advocacy as the major reasons for the increase in reported cases.

Laverack said that, while the numbers are low in the Lakes Region, basic prevention of tick bites is still important.

"The more information people have, the better they can protect themselves," Laverack said. "These cases really doubled for all members of the community. To prevent tick bites [is] not out of anyone's means."

The DHHS recommends avoiding tick-infested areas such as overgrown grass and brush and leaf litter, using insect repellent, wearing protective clothing, doing a tick check after being outdoors, keeping grass short and removing leaf litter around homes, and monitoring oneself if bitten by a tick and notifying a health care provider if any symptoms develop.

Early symptoms of Lyme disease often, but not always, include a large, circular rash at the site of the tick bite, accompanied by chills, fever, headache, fatigue, stiff neck, swollen glands, and joint pain.

Bourassa encouraged people who believe they have the disease to get tested.

Bourassa continues to work for patient advocacy. She and O'Mara will meet with Gov. John Lynch about the proclamation of Lyme Awareness Month and is closely watching two bills in Congress and the Senate that would prevent insurance companies from placing restrictions on chronic Lyme disease treatments.

For more information on Lyme disease, contact Laverack at the Lakes region Partnership for Public health at 528-2145.

Lakes Region LYME Support meets on the last Saturday of every month in the Elm Room of the Taylor Community Woodside building, except for May when they will meet on the 24th. For more information, call 1-888-596-5698 or email the group, LakesRegionLYMESupportYahooGroups.com.