Lyme disease still is bigger than what we know, Dave Cabell said.
Since a tick bite in 2011, it’s been a firsthand journey for Cabell about the limits of conventional treatment and varying levels of lyme literacy among physicians.
Now, the Soroco High School Student Council is organizing a potluck benefit dinner May 14 to help the South Routt resident pursue his best chance at relief from the disease.
Cabell and his wife, Lara Jackson, who is an English teacher at Soroco High School, were vacationing in Virginia three years ago when he was bitten by a tick.
They removed the tick but didn’t immediately make the connection when he started experiencing flu-like symptoms a month later.
Lyme disease stems from an infected tick expelling its salivary gland and abdominal contents into a human, according to the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center. The spirochete (a form of bacteria) then travels through the bloodstream, causing different symptoms as it goes. A red, bull’s-eye shaped rash accompanies the tick bite in about 60 to 70 percent cases, according to the center.
“We hadn’t heard about lyme,” Jackson said about when Cabell’s symptoms first started, but a co-worker of hers at the time was familiar with the disease and suggested it might be the cause.
“That’s what made us ever think of it,” Cabell said. “Then we started looking into it.”
Seeking treatment
Cabell traveled to New York two weeks ago to visit the experts at Columbia University’s research center, but when he initially was diagnosed, Cabell was prescribed a two-week course of antibiotics, which is the conventional guidelines for treatment, Jackson said.
“I felt completely better for a month or so,” Cabell said. “It was worse the second time.”
Jackson said the disease then progressed into his brain and spinal fluid, also known as neurological lyme disease.
The symptoms grew to include chronic fatigue, muscle and joint aches and brain fog, which Jackson described as a mental fuzziness akin to a constant hangover.
Jackson began methodically documenting Cabell’s symptoms when they resurfaced after the initial course of antibiotics.
“Every day when you come home, you’re just going to tell me how you feel,” Jackson said to Cabell, as she’d take notes.
“I think they need to do a benefit for her sometimes,” Cabell said about how supportive Jackson has been.
Because of the disease, Jackson said, they aren’t able to enjoy the activities they once did.
“A big part of it is just being so tired all the time,” Cabell said. “It doesn’t make much of anything fun.”
“It’s completely changed our lives,” Jackson said.
Their renewed hope for a permanent cure came from a cold call.
“I was at work,” Cabell said. “It was lunch time. My boss had to run an errand.”
With time to kill, he was researching the Columbia University research center online and looking for an email but only found a phone number.
“I just called, and she answered,” he said about the assistant director of the center. Cabell said she told him that she typically doesn’t answer that phone number but that if she gets someone on the phone, she sets up an appointment.
“It’s just a miracle, really,” Cabell said.
Jackson said the waiting list for getting seen by the specialists at the center is extensive and getting an appointment was a blessing.
Two weeks ago, they made the trip to New York, and Cabell went through two days of tests.
Help from community
The nature of lyme disease — varied symptoms, unfamiliar physicians, expensive and sometimes inconclusive testing — means that Cabell and Jackson are testing and treating first and submitting to their health insurance after.
The benefit potluck dinner hosted by the Soroco Student Council at 6 p.m. May 14 at the high school aims to help with the costs associated with the trip to New York. There also will be a white elephant sales, and the Student Council is accepting cash donations along with items for the white elephant sale.
“It’s incredibly special,” Cabell said about the students organizing the benefit. “I feel a little bit funny. It’s like nothing I’ve ever experienced.”
“I feel really blessed that we live in this community,” Jackson said. “I don't think it would happen other places.”
Two days after the benefit, Cabell is expecting a call from the research center.
“That will kind of go over all the tests,” he said, but it still will be another week or two before he gets treatment recommendations.
“This is the best shot I got as far as I can tell,” Cabell said.
Jackson said that during the time they have been dealing with the disease, they’ve met about a dozen other people in South Routt who’ve been diagnosed with lyme, and Cabell sees the benefits of their trip extending beyond just him.
“Maybe some other people can get help from what I learn,” he said.
To reach Michael Schrantz, call 970-871-4206, email mschrantz@SteamboatToday.com or follow him on Twitter @MLSchrantz