NEWARK – No one would have predicted the impact a bug the size of a freckle would have on 23-year-old Bryson Tussey’s life.
Tussey, the son of Kelly Connor and step-son of Newark Fire Chief Pat Connor, was bitten by a tick more than a decade ago, but his struggle with Lyme Disease has no end in sight.
From severe Lyme-reactive arthritis to stomach issues caused by antibiotics to the 11 surgeries he has undergone to date with more likely in the future, Tussey’s life was turned upside down.
“It’s gut-wrenching,” Kelly Connor said. “You don’t want to go through what we have.”
Kelly said she knew little about Lyme Disease when Tussey was bitten by a tick at the age of 12.
When Tussey didn’t get the bullseye type rash many people commonly associate with Lyme Disease, Kelly said they thought swelling he got in his left knee was unrelated to the bite.
“I felt like I’m crazy, he felt like he’s crazy,” Kelly said of her and Tussey. “Eighteen months in and I have a kid who’s very sick.”
Multiple knee surgeries did not solve the problem and eventually Tussey was sent to Nationwide Children’s Hospital for testing to determine if he had rheumatoid arthritis.
Blood tests ultimately determined Tussey had been suffering from Lyme Disease for more than 18 months.
Tussey was one of the first cases of Lyme Disease seen at Children’s and many doctors had no idea how to treat him, Kelly said.
“He didn’t get the aggressive treatment at the time that he needed because nobody knew what to do,” she said.
Since his diagnosis, Tussey has undergone 11 surgeries on his arms, legs and bladder. His arthritis causes problems with movement and pain in his joints and he has some memory issues like someone with Alzheimer’s Disease or dementia may experience.
Misconceptions about what Lyme Disease is and the long-lasting impact it can have has been another front to Tussey’s battle as well.
“To watch this kid, who was a laid-back athletic kid, look like he’s dying, it’s so frustrating as his mom,” Kelly said.
The lack of understanding many people around Tussey and the Connors had also extended to insurance companies, who didn’t cover much of Tussey’s ongoing treatment. The Connor family has spent thousands of dollars since his diagnosis.
Limited treatment coverage continues to be a problem for patients with Lyme Disease, Kelly said.
Doctor’s visits can cost hundreds of dollars each, with additional costs for medications and other treatments.
“In my mind, it’s up there with Lou Gehrig’s Disease and cancer,” Kelly said. “But you don’t get the compassion because you don’t look sick.”
Lyme Disease has gotten national attention in recent years with celebrities like actors Alec Baldwin and Ben Stiller, country singer Shania Twain, reality TV star Yolanda Hadid and her daughter, supermodel Bella Hadid, publicly discussing their struggle.
However, the Connors say those celebrities show a reality that cannot be achieved by everyone because stars have increased access to funds for treatments and the ability to travel outside the country for treatment options only available overseas.
“They do help bring awareness,” Pat Connor said. “But $700 to the average family for a doctor’s visit is a lot.”
In the years since Tussey’s diagnosis, the disease has seen a 33 percent increase nationally in diagnoses reported by the Center for Disease Control.
The numbers may still be underreported because of people being diagnosed as having arthritis or other conditions that are actually Lyme Disease.
Locally, five cases of Lyme Disease have been confirmed in 2017 and another 16 cases are suspected in Licking County.
Part of the struggle to get coverage and attention for Lyme Disease is the misconception that it can simply be treated with antibiotics and go away.
While that is true if the disease is caught very early on, it is not true in many cases, like Tussey’s.
“Awareness in Licking County is an issue,” Pat Connor said. “There’s a lack of education.”
Only 30 to 40 percent of Lyme Disease patients get the bullseye rash, which can lead to misdiagnosis and delays in treatment that result in permanent damage, Kelly said. She said she encourages anyone she knows who has been in contact with ticks to see a doctor.
Online support groups and communities have also been a source of comfort to help realize Tussey is not alone in his battle with Lyme Disease. Some of the groups also offer treatment options and ideas for homeopathic remedies.
Pat Connor took a round of antibiotics as a precaution earlier this year after being bitten by a tick. He said getting preventative treatment for Lyme Disease should be done in the same way people get precautionary treatment for exposure to blood-borne pathogens or rabies.
The Connors also hope fundraising and research into Lyme Disease and treatments for the long-term effects of the bacteria will increase.
“There’s better testing and treatment for dogs than humans,” Kelly said.
The Connors hope sharing their story will help people realize just how common Lyme Disease really is.
“It’s something where every time we turn around, another friend knows someone who’s been diagnosed,” he said. “The numbers in Licking County just don’t reconcile with how prominent it is.”
While Tussey continues to struggle some days with the effects of his disease, which has no known cure, he has made great strides.
He and his girlfriend are expecting their first child and he works on detailing cars and other jobs when he is able.
“We take it day by day,” Kelly said. “I never understood that phrase ‘one day at a time’ until we went through this, but that’s really what we do.”
Lyme Disease Symptoms
Exposure to tick bites can cause Lyme Disease. In some cases, but not all, a bullseye type rash will develop around the bite location.
Other symptoms can include, but are not limited to:
Extreme fatigue, joint pain and swelling, migraines, memory issues, inexplicable pain, adverse reaction to treatment using steroids.
If you believe you may have been exposed to Lyme Disease, contact a doctor immediately and ask to be tested. The Connors also suggest doing your own research and pursuing second and third opinions if necessary.