Tick Tock

A Lyme disease sufferer begins a new support group for others with the bacterial illness

Kristin Schofield wasn’t sure what to expect when she decided to start a support group for those affected by Lyme disease. She only knew that there were others like her, others who needed someone to talk to and maybe some advice on how to proceed. Named for the Connecticut town where it first appeared, Lyme disease is spread through the bite of a tick that is infected with a specific bacteria.

“I’m not a support group kind of person, so this was big for me,” says Schofield, 37, a New Jersey native who was diagnosed more than a decade ago. “But I knew I wasn’t the only one looking for resources.” So Schofield, a volunteer coordinator for Community General Hospital, started the Central New York chapter of the Empire State Lyme Disease Association. The first meeting was held April 4 at the Onondaga Free Library on Onondaga Hill.

“It’s not that I have all the answers, but I’ve been through so much,” she explains. “It would be great to share some of the information I have so that other people don’t have to go through what I did.”

When Schofield initially became ill, her doctor was reluctant to consider Lyme disease. She didn’t have the bull’s-eye rash so often associated with the disease, but she had developed Bell’s Palsy, a cranial nerve degeneration that causes facial paralysis on one side. Lyme disease is one of the main causes of the condition. “My former high school soccer coach, who has Lyme disease, saw me and was shocked,” Schofield recalls. “He knew right away that it was Lyme.”

Blood tests confirmed the diagnosis, and Schofield underwent antibiotic treatment. Unfortunately, the road to recovery would be a long one. Last year, Schofield’s symptoms had compounded to the point where she was convinced that her condition had become chronic.

But she could not find a doctor in Central New York who would take her condition seriously.

“All the infectious disease doctors {in Central New York} wouldn’t touch me,” says Schofield, who now lives in Syracuse. “They said chronic Lyme disease didn’t exist. But if the disease isn’t treated completely early on, you can go through stages of dormancy and flare-ups. In my case, I had been sick so long, the damage was neurological.”

She finally connected with Dr. Bernard Raxlen, a specialist at New York- Presbyterian Columbia University Medical Center, in March 2010. After an extensive exam, she was prescribed a treatment regimen that includes three powerful drugs: rocephin, mepron and azithromycin. For the past 10 months, this single mother of two has endured twice-daily intravenous injections through a port implanted under her skin. Schofield expects to complete her treatments this week.

“A lot of people don’t know that you can develop co-infections,” Schofield says, explaining she has been diagnosed with two bacterial infections—Babesia and Bartonella—in addition to Lyme. “When a tick bites you, you can get a lot of things.”

Schofield now has a good rapport with her primary care physician, who coordinates treatment with Dr. Raxlen. Her regime included some side effects, and she suspects the rocephin may have led to the loss of her gallbladder last year. But she can’t imagine where she would be now, had she not been proactive. “I know my life could very easily have been shortened,” she says.

Her children, ages 9 and 11, have become accustomed to their mom’s daily routine. They also know how to check themselves for ticks after playing outdoors. “Yeah, they know the Tick Check Boogie,” Schofield says with a laugh. “With my kids, I try not to be an alarmist. But everyone needs to be careful. There are ways to protect yourself.”

Dr. H. Brian Underwood, associate professor of wildlife ecology and environmental biology at the SUNY College of Environmental Science and Forestry, has been studying Lyme disease for more than a decade. He and other ESF researchers have done some small, pro bono studies on the deer at Green Lakes State Park in Fayetteville, and the transmission of Lyme, but there is nothing formal being done at this time. A 2008 study of ticks collected at Green Lakes determined a high level of Lyme infection. Underwood says the state and county health departments have done a good job of keeping the public aware of how best to avoid exposure to Lyme disease.

“The fact is, Lyme disease is preventable with some fairly simple precautions. {See the county’s website, www.ongove.net/health/documents/lymeflyer.pdf.} And it is a very treatable disease if caught early,” he says. “I think the county is making people aware of it, and people have not been ignoring those warnings.”

Underwood has studied the disease extensively on Long Island. He says scientists have now widened the scope of their research from deer, which are primary carriers of adult deer ticks, to small rodents—which can not only carry the smaller, harder-to-see juvenile ticks, but can also serve as hosts for the disease.

“The deer are not the main problem,” he says. “Any attempts we make in trying to wipe out this disease would have to take effect at the small mammal level {primarily whitefooted mice, squirrels and raccoons}.”

Underwood says mice can actually transmit Lyme to ticks when they are bitten, while deer cannot. Even birds such as robins may play a significant role in the spread of Lyme. There is evidence that robins may have transmitted the disease to other small animals in Southern states. “This is the No. 1 vector-borne disease in the country,” he says.

While scientists continue to learn more and more about the epidemiology of Lyme Disease, Underwood says education and vigilance are the best defenses. “I’m afraid this is a disease we are going to have to learn to live with.

It’s a vexing problem, but I’d advise people to continue to consult their state and county health departments if they are going out into parks or wooded areas.”

Schofield agrees that the Onondaga County Health Department has been diligent about keeping the public informed, but says the medical community needs to do more for those with lingering symptoms. Through the support group, she hopes to put others who have the disease in touch with solid information from the state and experts she hopes will speak at future meetings.

“It is amazing to me that doctors in this area are not well-versed in this,” Schofield notes. “I don’t know what’s going to happen with this group, but people need to know that they are not crazy. They also need to get the information they need to make good choices for their care.”

The newly formed Central New York Chapter of the Empire State Lyme Disease Association, Inc. meets the first Monday of the month at 7 p.m. in the community room of the Onondaga Free Library, 4840 W. Seneca Turnpike.

ESLDA is a nonprofit organization bringing together patients of Lyme disease and other tick-borne illnesses. For more information, call Kristin Schofield at 200-6541 or email lymecny@gmail.com.

Support system: Ten years after her diagnosis of Lyme disease, Kristin Schofield is nearly done with the current course of drugs, a dose of each (facing page) she has to take daily, and has initiated a support group for others that have been affected by the nasty bite of the tiny deer tick.