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North Fork residents share their stories of tick-borne illness

05/26/2017 6:00 AM |

At age 3, Chyanne Doroski would complain that her legs hurt. “Growing pains,” her family thought.
On other days, it was a headache that brought the Greenport girl down. 

As she got older, it was a battle to get her out of bed for school each day because she suffered from fatigue.

“Why are you so tired?” her mom, Camille Kiernan, would ask as she pulled her out of bed, exasperated.

Some nights Chyanne couldn’t sleep at all, and she often had no appetite. For almost six years, the symptoms continued.

It wasn’t until about two years ago that Chyanne was diagnosed with late stage neurological Lyme disease, which continues to affect all facets of her life.

Tick-borne illnesses, such as Lyme and babesiosis, have affected individuals around the North Fork in different ways. For some, disease has changed their day-to-day functions, down to what foods they eat or how they get dressed in the morning. For others, illness has even claimed the life of a loved one.

“Basically, days revolve around Chyanne,” Ms. Kiernan said. “Whether she’s going to get up that day, whether she’s going to tutoring, whether she’s going to have a headache, whether she was up all night, whether she’s gonna have pain, is she strong enough to eat today, is the medicine gonna make her sick.”

Chyanne, now 10, has not attended school in two years, as her symptoms can be unpredictable. Every day is different, making it tough even to set a schedule with a tutor.

“Sometimes my back hurts and it doesn’t the next day,” said Chyanne, a thin girl with long blonde hair and fair skin. Her medication makes her skin extra sensitive to the sun, so the family spends less time than they used to at the beach and doing outdoor activities.

As Chyanne and her mother told their story, her younger brother, Thomas, arrived home from school. There are times when Chyanne is upset with herself, seeing him go to school and play with friends, but her mother points out that it’s not her fault.

Earlier this year, she started seeing a Lyme disease specialist in Manhattan, which the family pays for out of pocket. It cost $3,000 to get started with a consult and testing. Ms. Kiernan took on a night shift at 7-Eleven to help pay for medication and food, but donations raised through a GoFundMe page allowed Chyanne to get her first appointment.

Chyanne outside her Greenport home. (Credit: Krysten Massa)

The family found help through a change in diet, with more clean eating and foods that supplement the long-term antibiotics Chyanne now takes. She is willing to try anything that will make her “gut health” stronger, including drinking live bacteria cultures and kombucha, and eating kimchi.

“Even the dog eats healthy,” Chyanne said of Eve, the center of her world. She perked up and smiled when she heard Eve bark and come into the house, calling her “Sweetie,” and beckoning her with two kisses. The shelter where the family adopted Eve told them she has Lyme disease, too.

“I feel bad,” Chyanne said, knowing her dog is in a similar boat. “It’s not fun.”

On the days she’s feeling well, Chyanne, who has a taste for wearing band T-shirts, choker necklaces and a stack of bracelets, likes to take Eve for walks.

After going untreated for so long, the illness took full run of her body, Ms. Kiernan said. She can now look at her daughter and know which symptom she is experiencing. That day, it was all neurological. She noticed Chyanne was having concentration issues, a twitch and was stuttering a bit. Other days it could be mood swings, back or leg pain and fatigue.

The disease also dictates where the family sleeps. Chyanne and her mother stay on the first floor of their home. If she can’t sleep, her mother stays up with her until she can drift off.

While it was hard to grasp that she had suffered for most of her life, the diagnosis came as a relief, Ms. Kiernan said.

The day Chyanne found out, she was “really, really happy” because she finally had an explanation for the way she was feeling. Before that, she felt isolated for not feeling like other people, her mother said.

“That was the best part of it all, sad to say, was really, truly finally knowing what was wrong,” Ms. Kiernan said.

Nancy Gassert inside her Riverhead home this week. (Credit: Krysten Massa)

Nancy Gassert of Riverhead, 71, also suffered from Lyme disease for years before being diagnosed with the illness.

In 1983, she noticed a bull’s-eye rash on her foot. It’s a symptom that is now typically associated with Lyme disease, although it does not appear on all who are infected. At that time, the disease had only been discovered less than a decade earlier after a cluster of cases was identified in Connecticut.

Ms. Gassert recalled that when she went to her doctor to get the bull’s-eye checked out, another physician was called in because they’d never seen anything like it. She was given a week’s worth of antibiotics and felt better for about a month, but she soon came down with a slew of recurring infections that had her in and out of the emergency room.

“What’s wrong with me?” she would wonder. After that, it was her heart. She could feel it skip beats, and at one point she was admitted to the hospital and told she’d experienced a heart attack. It was not until 1990 that she was diagnosed by a doctor who was more familiar with the Lyme disease symptoms she continued to show.

She was treated with long-term intravenous antibiotics by a doctor who later became entangled in controversy and was charged with medical misconduct for his methods of treating late-stage Lyme disease.

She remembers it being “awful” seeing other patients at the office, whose brains were affected, walking “like zombies.”

Lyme disease has taken a toll on Ms. Gassert’s joints. Her fingers are swollen, stiff and bent, and she has little feeling in her hands, making it tough for her to grasp anything. She can now take only four or five steps without a walker, especially after two hip replacements and a knee replacement.

“It completely changes your life because you can’t do things that you used to do the same old way,” she said. “You have to find different ways to do it.”

Ms. Gassert was always an avid gardener, and often did so barefoot, growing vegetables for her two children. She also loved to decorate her home, covering the walls with wallpaper and crafting wooden trim for the doorways.

“I had a wonderful life, let’s put it that way, but when this hit, it was rough,” she said.

As her joints have deteriorated, she’s even had to modify how she gets dressed. She uses a grabber tool and her husband, Howard, slips her socks on and ties her shoes. Over the years, she tried to avoid medication that would slow the degeneration, wanting to prevent side effects that could damage her liver. She tried to fight the disease as naturally as she could, and now takes 10 types of vitamins each day for various reasons.

She is careful to be aware of her hands when she cooks, because she can no longer feel if she is being burned and needs help lifting roasts out of the oven.

But while daily life has changed, she does not let the disease stop her. Her strong faith and love for her family keep her going.

“I’m a fighter,” she said. “I refuse to let it get me down.”

Ms. Gassert has continued to live her life and do the things she’s enjoyed, including serving 12 years on the Riverhead Board of Education as well as working on various town committees. She takes heart in a quote from Christopher Robin to Winnie the Pooh that hangs above a doorway in her kitchen: “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

Lyme disease is not the only illness transmitted by black-legged ticks, better known as deer ticks. Babesiosis, anaplasmosis and Powassan virus are also associated with them.

Slowly, since the mid 1990s, Dr. Scott Campbell, head of the Suffolk County Arthropod-Borne Disease Laboratory on Shelter Island, has found that Lone Star ticks, which carry ehrlichiosis, have spread west from the tip of the South Fork almost to the county line with a growing deer population. Another change has been seen in American dog ticks, which carry Rocky Mountain spotted fever. That population has decreased over time, however, as meadows either grew into wooded areas or were developed, Dr. Campbell said.

In 2015, the most recent year for which data is available, more than 650 cases of Lyme disease were reported in Suffolk County, according to state records. More than 200 babesiosis cases were reported that year.

Rich Feeley holds a photo of his father, Thomas, who died after being diagnosed with babesiosis. (Credit: Kelly Zegers)

Thomas Feeley Jr.’s family noticed in the spring of 2013 that he was acting strange. He was shaking his head and had some aches and pains, his son Rich, of Southold, recalled.

It took a few weeks and treatments at three different places for a different infection before he was finally diagnosed with babesiosis, said his daughter Denise Feeley-Manarel of Riverhead. By then it was too late. Six weeks later, on Aug. 29, he died of complications from the disease. He was 87 years old.

“It killed my father,” she said. “It breaks my heart. He lived such a nice life.”

It was difficult because, in general, he was a healthy older man, she said.

“He had his illnesses here and there, but nothing like this,” she said.

The worst part was his inability to speak at the end, she said. He loved to talk.

Mr. Feeley described his father as self-sufficient and independent. He still drove and did his own shopping.

Growing up, the siblings remember playing in the woods often. Lyme was only just being discovered and they’d never heard of babesiosis.

It was unclear exactly how their father was bitten, but he enjoyed spending time outside. He would place chairs around his Southold property where he could sit as he moved to be in the sun throughout day and rest after working in his garden. He also had a small dog, with fur “like a Swiffer,” the younger Mr. Feeley recalled.

“We don’t know how he got it other than he lived in an area where there was tons of ticks,” Ms. Feeley-Manarel said.

The East End typically sees more cases of human infection with tick-borne diseases because of its ecology, according to Dr. Campbell, with more wooded areas and a heavier deer population.

Tick bite prevention is paramount in avoiding illness, Dr. Campbell said. It’s all about creating a barrier for ticks, wearing long, tucked-in clothing, repellents or both. Ticks can be killed by putting clothes in a dryer for 10 minutes.

Frequent tick checks are important, too, especially for children and pets, he said. It’s important to realize the tick population is fairly consistent across the county, he added, noting that some locations might not have ticks, but that tick and deer populations have been expanding westward on Long Island.

“You have to really be cognizant of where we live and the fact that ticks are here and that we need to do everything possible to be diligent at preventing tick bites and doing tick checks and trying to prevent any kind of transmission,” he said.

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