SOUTH GLENS FALLS — Nick Barden is the picture of health: young, athletic and quick-witted with an easy, bright smile. But a little more than two years ago, while lying on the couch in his family’s living room, he thought about how to kill himself.
Barden doesn’t suffer from depression or bi-polar disorder. He hasn’t been bullied or abused. The 18-year-old suffers from Lyme disease.
The winter of his sophomore year of high school, Barden — always a good student who learned easily — started struggling on tests, even when he studied.
Two of his teachers were talking and brought up the changes they saw in his classroom performance.
“They called my parents and said, ‘Something’s up with Nick,’” the recent South Glens Falls High School graduate said.
They brought him to his pediatrician, who ordered several tests, including two for Lyme disease. One processed locally came back negative; a second sent to a lab in California came back positive.
Barden was lucky.
According to Holly Ahern, associate professor of microbiology at SUNY Adirondack and Lyme disease awareness advocate, diagnostics for Lyme disease blood tests hover around half.
“The rate of false negative is 50 percent,” she said, “so you have Lyme disease but go undiagnosed.”
The difficulty in diagnosing Lyme disease is a problem long recognized by many doctors, creating controversy between two different camps: One closely follows the Infectious Diseases Society of America (IDSA) standards, which were based on early guidelines constructed for epidemiological screening of the disease in larger populations, and the other focuses on International Lyme and Associated Diseases Society’s (ILADS) research, which its doctors believe show Lyme disease is a chronic condition.
“The problem we’re facing in general in diagnostics is there are over 100 strains of borrelia in the United States,” said Dr. Richard Horowitz, author of “Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease” and a leader in Lyme research.
Borrelia is the bacteria transmitted to people when infected ticks bite them, causing Lyme and other diseases.
Some of the strains cause Lyme-like symptoms but aren’t detected by standard blood tests, Horowitz said.
Those suffering from Lyme disease also are frequently suffering from co-infections, he said, further complicating diagnoses.
Better testing being developed by Translational Genomics Research Institute (TGen), in which DNA is tested to detect the presence and severity of Lyme disease, is expected to be ready in about two years, he said.
“Time will tell, in terms of validation,” he said. “It’s looking promising.”
“This is the first year I can say there’s good news,” Ahern said. “It’s a game-changer, it will allow people who have mysterious symptoms and no diagnosis to know, to rule out Lyme disease or rule in Lyme disease.”
Physically and mentally draining
While Barden was diagnosed soon after visiting a physician, treatment proved more difficult.
“It was kind of scary when I got it because I didn’t know what was happening to me,” he said. “I was hurting all the time. I was exhausted. Nothing would stick in my head. It was terrible.”
After the diagnosis, Barden started a three-week cycle of doxycycline, an antibiotic commonly used to treat infections caused by bacteria and protozoa.
“It didn’t do much for me,” he said, shaking his head at the memory of the weeks he spent so tired, he could barely function. “I just wanted to take a nap. I had joint aches — knees, elbows and shoulders.”
After a junior varsity basketball game against Glens Falls, Barden went home tired and fell into bed. “I woke up the next morning with my joints on fire.”
He started missing school and had to take a long stretch away from the sports he loved. Before getting sick, he weighed 185 pounds and was “in really, really good shape,” he said.
“I shrunk down to 170,” he said. “I didn’t work out at all, really because I couldn’t.”
As his physical condition deteriorated, so did his emotional well-being.
“It drove me crazy,” he said. “The physical stuff, the brain stuff, it’s part of it, part of what it does to your psyche.”
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“There were points I was in a really dark place,” he said, his voice low. “I was angry, I kept telling myself it was unfair.”
Barden underwent two 43-day cycles of rocephin, an intravenous antibiotic used to treat bacterial infections. Every morning before school, he sat for 30 to 45 minutes at Glens Falls Hospital’s Infusion Center as the treatment dripped into his veins.
After that, he had a good stretch where he felt he was regaining his health, but it didn’t last long.
“Every time I’d start to catch up and have things go smoothly, we’d get hit again,” he said.
‘A full-blown epidemic’
Recurrent symptoms — migratory joint, muscle or nerve pain; fatigue; trouble sleeping; unexplained memory or concentration problems; mood changes — are a telltale sign of Lyme disease, Horowitz said.
“If people have good and bad days, where symptoms come and go without reason … that is very specific to Lyme disease,” he said.
Despite the difficulty in diagnosing the disease, the number of reported occurrences are up in affected states.
The Centers for Disease Control and Prevention reported that Lyme disease is the most commonly reported illness transferred from insects in the United States and the fifth most common nationally notifiable disease, despite being concentrated primarily in the Northeast and upper Midwest.
“People need to realize we’re in a full-blown epidemic,” Horowitz said.
According to information provided by the CDC, the number of reported Lyme disease infections in Washington County jumped from 1 in 2000 to 272 in 2011. In Warren County, the number went from 0 in 2000 to 76 in 2013; Saratoga County showed an increase from 11 in 2000 to 207 in 2013.
“It should be noted that Centers for Disease Control and New York State Department of Health both agree that the number of Lyme disease cases are underreported,” said Dan Durkee, senior health educator for Warren County Health Services.
“The tick population has increased, and we live in a region where a lot of people spend their time outside,” Durkee said. “It’s something we’re going to have to learn to live with; the tick population isn’t going to leave, it’s not going to go away.”
Durkee said he has heard theories of why the tick population is booming, including development in areas south of the region pushing animal populations north.
“The theories are out there, but nothing definitively saying why they’re here,” he said.
Ahern, the SUNY Adirondack scientist who started focusing on Lyme disease research after her daughter was infected, said the recent mild winter likely will increase tick populations next year, as there will be a bumper crop of acorns and nuts, which in turn increases mice populations, which will boost the tick population.
“The more ticks, the more risk to humans,” she said.
Learning and moving forward
Barden loves being in the woods, mowing or riding four-wheelers with his dad. And while his struggle with Lyme disease was scary, he isn’t going to stop doing what he enjoys.
“I put a lot more bug spray on now, that’s for sure,” he said. “And I put on a lot more clothes, but I still go out in the woods just as much as I did.”
As class president at South High, Barden delivered a speech at his high school graduation in which he admitted to his peers and their families that he was so low, he faced suicidal thoughts.
“One of the days, sitting home from school, I was seriously contemplating killing myself,” he said. “It was very hard for me to say in front of a few thousand people, but I wanted people to know if they’re going through tough times, they’re not alone.”
As Barden’s health improved, so did his outlook.
“I see things in a different light now,” he said. “I got so angry at myself. I had too much going for me and too many people who loved me and who I loved.”
It took Barden a long time to regain strength physically and to compensate for some of the cognitive difficulties caused by Lyme disease. He had to have surgery on his knee, to remove a small tumor his surgeon said could be a result of Lyme disease.
But as he prepares to leave for Clarkson University in a few weeks, he feels lucky to have learned a lot about himself and proud of what he has overcome.
“You can learn so much, everyone can look back at their life and learn from experiences they had,” he said. “This was one of those defining moments.”