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Life with Lyme disease



One teen’s struggle to overcome a potentially deadly disease

By Jennifer Corbett
This is part one of a two-part series detailing Lyme disease. The first part discusses life with Lyme disease. The second part will discuss the history of the disease, the controversy behind it and how to prevent tick- borne diseases.
<div class="source">JENNIFER CORBETT/The Kentucky Standard</div><div class="image-desc">Bryan Petsy, 19, of Cox’s Creek, sits on his family’s couch as he waits for the antibiotics to enter the “PICC Line” attached to his arm. The PICC Line is an IV that injects antibiotics around his heart via a tub. Petsy has to do this twice a day while he battles Lyme Disease. </div><div class="buy-pic"><a href="http://web2.lcni5.com/cgi-bin/c2newbuyphoto.cgi?pub=191&amp;orig=IMG_6709.JPG" target="_new">Buy this photo</a></div>
JENNIFER CORBETT/The Kentucky Standard
Bryan Petsy, 19, of Cox’s Creek, sits on his family’s couch as he waits for the antibiotics to enter the “PICC Line” attached to his arm. The PICC Line is an IV that injects antibiotics around his heart via a tub. Petsy has to do this twice a day while he battles Lyme Disease.
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Upon first glance, 19-year-old Bryan Petsy looks like an average teenager.
Described as quiet, he has typically been seen in front of a TV or computer playing one of his favorite video games.
An IV attached to his right arm is the only noticeable sign that he’s sick. The IV, or “PICC line,” begins in the upper arm and has a tube sending antibiotics to the area around Bryan’s heart.
Most of the time, though, the IV is covered by a white cloth, leaving most to think he’s just tired or suffering from allergies.
Bryan is currently battling Lyme disease and Rocky Mountain spotted fever, tick-borne diseases that are transmitted via deer ticks, dog ticks and Lone Star ticks. Typical symptoms include “brain fogs” (short term memory loss), fever, headache, fatigue and skin rashes, according to the Centers for Disease Control and  Prevention’s website.
The infection can also spread to the heart, joints and nervous system.
“The symptoms come on so gradually,” said Bryan’s mother, Vicki. “People don’t know what to say. People would say, ‘Oh he looks fine.’ He looks like he partied too much. (At one point) he got so bad that he couldn’t walk. My husband had to put (Bryan) in a wheelchair. I would try to talk to him, but he had such bad brain loss. He couldn’t speak. I sat there waiting for him to say something, but he couldn’t get it out.”
In order to raise more awareness for a disease she said many don’t understand, Vicki began working with the Kentuckiana Lyme Disease Support Group. She helps run the group’s Facebook page, where people can come together and offer a shoulder to lean on.
“You need that emotional support,” she said, noting Lyme Disease is a subject where you “don’t get it, until you get it.”
“I kind of understood because I’m his mom,” she said, “but until I got it and felt it in my head, I was like, ‘Oh my gosh!’ You feel terrible.”
Bryan was first bitten in April 2011, during his senior year at Nelson County High School. He was working at his family’s farm in Cox’s Creek, something that he always enjoyed.
That afternoon, he found tick bites on his groin, buttock and arm.
According to Vicki, Bryan developed flu-like symptoms. He was taken to the doctor, but was only prescribed fluids. Doctors initially thought Bryan had a virus.
“He did get better on his own, but he started having weird symptoms that he couldn’t explain what was happening to him. He started having weird feelings,” Vicki said. “You can’t explain it. That’s why some people say it’s mental.”
After a while, Bryan had trouble swallowing food.
“When I want to eat, (Lyme disease) won’t let me,” Bryan said, noting that in order to overcome it, he typically waits, sleeps it off and tries to eat later.
Initially, Vicki thought it was because of his longtime battle with food allergies and asthma.
“He does have allergies, so we thought maybe a new insecticide was being used in the school building,” she said, “or it was too warm in the building for his asthma.”
They visited a “Lyme-literate doctor” who thought Bryan’s inability to swallow was due to another bacterial infection called Marcons.
“That’s why he can’t swallow,” Vicki said. “We’re going to attack that next to get rid of the co-infection and other problems he’s having. There are a lot of Lyme patients who have feeding tubes because they can’t swallow.”
Last July, Bryan was taken to his regular doctor. A blood test was administered to test for Lyme disease.
According to Vicki, Bryan tested positive for the disease. He was given a week’s worth of antibiotics.
After the medicine ran out, Bryan took a turn for the worse. He was taken back to the doctor August 2. An ELISA Test, a blood test aimed to detect any Lyme disease antibodies in the blood stream, was administered.
Test results indicated nothing was wrong with Bryan, but Vicki said she knew her son was suffering from Lyme disease. The family doctor suggested Bryan see a neurologist.
The neurologist knew Bryan had Rocky Mountain spotted fever, another tick-borne disease transmitted by the brown dog tick, American dog tick and Rocky Mountain wood tick.
In late August, Vicki took her son to an infectious disease specialist. By this time, Bryan was disoriented.
“He couldn’t even sit up in the car,” Vicki remembered. “He had to lay down. He couldn’t understand any conversations.”
After a trip to the hospital, Bryan was still stick, but Vicki said he could talk, walk and eat again.
By Christmas, Bryan had begun to gradually improve. The family even celebrated his recovery. He enrolled in Elizabethtown Community and Technical College for the spring semester.
However, one evening after class, Bryan relapsed in his car. Brain fogs caused him to become disoriented, forget what he was doing and gave him momentary memory loss.
“You feel really tired,” Bryan said. “Like when I got to my car, I’m usually excited. But when I got to school, I felt like a zombie. My eyes were gloomy … It gets aggravating.”
After that, the family realized attending class at ECTC was too much for Bryan. So they enrolled him in an online math course.
“He loves math,” Vicki said. “He did just fine. He even went and took the final in front of the professor. We couldn’t believe it.”
Bryan did encounter some brain fog during the test, telling his mom later that he didn’t remember what he learned in the beginning of the class.
Vicki then turned to her son, “What did you get? A 94?”
Bryan nods his head indicating a “yes.”
Bryan added that brain fogs also affect him when he plays his favorite video games.
“You don’t know what you’re doing for a second,” he said. “I come back, and I’m like, ‘Oh, this is what I’m doing.’”
Bryan then put his head into his hands and said, “Sometimes I feel like a ghost.”
In terms of family and friends, Vicki said they have had difficulty understanding the magnitude of Bryan’s illness.
For example, Vicki said her oldest son, Andy, picked on Bryan during a past trip to California.
“He didn’t understand it,” Vicki said, “because you can’t see anything wrong with (Bryan). He didn’t have the IV. Just because you don’t see anything doesn’t mean they’re not sick.”
But once Andy learned about Lyme disease, he understood what his younger brother is experiencing. Why he stays in bed. Why he has brain fogs.
On the other hand, the family doesn’t let it bring them down. They try to create a normal atmosphere for Bryan.
They understand that there will be some days where he seems OK.
“When he’s not tired, he can handle talking,” Vicki said. “He will be laughing right there with us. Even (Andy) will get him laughing. He got (Bryan) playing pool and golf.”
JENNIFER CORBETT can be contacted at jcorbett@kystandard.com