The Hedges family looks healthy, but it’s a struggle every day just to get out of bed.
“Think how you feel on the worst day of the flu,” said Shannon Spears, a certified nutritional therapist who’s working with the family. “And multiply that by 10 or 20 and live with it every day.”
That’s what it’s like to live with Lyme Disease.
The little-understood disease, which mimics other illnesses, has zapped the Hedges family — and many others — physically, emotionally and financially.
Last year, 233 people in Illinois were diagnosed with Lyme, but the actual prevalence could be 10 times that number, Spears said. It’s found in all 50 states and worldwide. About 300,000 people a year contract it; if left untreated, it becomes chronic. It’s not contagious.
Erik and Tawne Hedges of Catlin and their daughter Halle, 16, have suffered a variety of symptoms for some time — headaches, swollen lymph nodes, kidney and joint pain, brain fog and memory loss, extreme fatigue, insomnia, blurred vision and more. They were all diagnosed in the summer of 2015.
“People don’t hear the cancer word, so they think, ‘she must be OK,’” Tawne, 38, said. “We don’t look sick, but we fight it every day. It’s debilitating.”
Erik, 44, can’t ride his motorcycle anymore because he gets disoriented and unable to keep the bike steady.
“Everything you love is taken away from you,” he said.
Tawne works at Hall Law Firm when she can, adding, “They have been amazing to all of us.”
TEEN ALWAYS TIRED
Above all, the couple is concerned about their teenage daughter. They also have an 8-year-old son, Gannon, who sometimes shows symptoms, but his blood work has not come back positive.
In an effort to raise money for Halle’s medical treatments, the newly formed Central Illinois Lyme Disease Foundation is hosting a benefit dinner Monday, Dec. 5, at Turtle Run Banquet Center in Danville.
Information will be available about how the disease has affected the teenager’s life, as well as her family.
Halle has been struggling with the disease for the past three years. It’s been more than two months since she’s had the energy to attend Salt Fork High School, where she is a junior. A teacher has been home-schooling her for an hour or so each day, when possible.
“I can’t focus on school work. It’s really hard,” Halle said.
She’s also tired all the time, adding, “It’s so hard for me to get up in the morning.”
What she misses most is that she can’t attend art classes. Halle has always loved art, but her drive for it is gone, her mother said.
Some of Halle’s pieces, both acrylics and pencil drawings, will be auctioned at the benefit. She’s happy and excited about the benefit.
Besides the art class, she also misses her friends, who have stopped coming around. She doesn’t have the energy to go out and have fun.
“It’s heart-wrenching to watch,” her father said. “There’s nothing worse than seeing your daughter struggle every day.”
People don’t understand about the disease, and so, the support is lacking, Tawne said.
Conventional treatments for Halle have been exhausted, and the family is looking into alternative holistic treatments.
Working with Spears and also Dr. Yai Buranakul has been a lifesaver for the family. Buranakul has an office at Country Store Health Foods and also visits patients in their homes.
Upon Tawne’s suggestion, Spears and Buranakul have formed the Central Illinois Lyme Disease Foundation to educate people.
Erik and Tawne, along with Halle, think they contracted the disease through tick bites while working in a cemetery several years ago.
“We brushed ticks off all the time,” Erik said. The odds are good that’s when they were bitten by affected ticks.
“For all three of us to get it … it’s common sense,” he said.
Erik started showing symptoms five years ago when he had swollen glands and a spot on his lung. Lyme mimics other diseases, especially lupus and fibromyalgia, and so, he didn’t get a correct diagnosis for years.
One day, he couldn’t move his legs, and couldn’t get out of bed. He also gets headaches, joint pain and has swollen glands, which people don’t see. He lost 100 pounds.
He had scare after scare, including the thought that it could be cancer.
He became suicidal, and at one point, he went without sleep for three weeks.
Finally, his son mentioned that a neighbor had Lyme, and Erik had a test done in July 2015. It came back positive for Lyme.
Lyme can be treated if diagnosed soon enough, but, he said, “It’s gone on for so long, we’re stuck with it.”
The problem is that Lyme is difficult to diagnose; a positive result happens only when the Lyme bacteria are active. People can get a negative result and yet still have the disease. Any type of stress can trigger symptoms.
Erik underwent an antibiotic regimen, which made it worst. He has found some relief through nutritional therapy, including the herbal supplement CNS, which soothes and calms the central nervous system.
Erik has gone from being suicidal to productive, and said he’s happy with being 70-80 percent of what he used to be. But, he still suffers the effects.
Tawne began feeling the effects about three years ago, and she was diagnosed in August 2015.
At first, she thought her depression stemmed from losing several family members in the past few years. She learned later that, with Lyme, every emotion is amplified.
“I was the Energizer Bunny before this happened,” she said. “We’ve always been go-ers and do-ers.”
She added, “I wish people could see how hard it is to get out of bed. There’s a difference between I don’t want to and I can’t get up.”
About half of the Lyme sufferers experience a red bull’s-eye rash at the bite site, but the Hedges family didn’t.
Tawne didn’t believe in herbal treatments before, but she’s been working with David Hurley at Country Store Health Foods, and getting some relief.
While the Hedges family believes their disease started with ticks, researchers believe mosquitoes and deer flies could transmit it. Spears said another theory is that everyone carries the Lyme bacteria, and it’s triggered by something in the environment, such as bugs, mold and chemicals.
It’s also known as Lyme borreliosis, as it’s caused by bacteria of the Borrelia type.
Buranakul believes a better term is Multi-Systemic Infectious Disease Syndrome, and noted that Lyme is a complicated condition that’s accompanied by other infections. If the bacteria hide from the immune system, it’s difficult to kill them, he said.
“We want to build up the immune system and health,” he said.
It’s not about avoiding getting bitten or getting rid of ticks, he said; instead the answer is to build up your health.
Lyme is difficult to diagnose because it mimics other illnesses.
“It shape-shifts and likes to hide in your body,” Spears said.
While there’s no cure for Lyme, it’s important to address the symptoms on an individual basis.
Spears said she can’t treat people, but she can be the “middle man,” guiding clients, supporting them and giving them resources.
Services offered by Buranakul, Spears, or the Country Store Health Foods are not meant to replace conventional medicine, but instead meant to complement conventional medicine, working together with you and your doctor, not against them.