Kaleigh Ahern wore a maroon fleece jacket emblazoned with "Union College Swimming and Diving" on the placket. It was a reminder the happier times for the two-time All-American athlete and nationally ranked swimmer when the 19-year-old was focused on academics, friends and competition.
That has all changed.
Kaleigh, a sophomore, had to withdraw from school in December because she was diagnosed with chronic Lyme disease.
"It's pretty much destroyed everything. I was feeling great; I was at my dream college with all my best friends. Suddenly I'm sick and I can't hang out with my friends as much because I'm, like, weird. My personality changed almost," Kaleigh said. "When your body is under so much stress, it's hard to be happy."
There is ongoing controversy about how accurately the disease is reported, the guidelines set forth by the Centers for Disease Control in diagnosing and treating Lyme disease and the duration of antibiotic treatment. What's clear, however, is that we live in an area in which deer ticks and the incidence of Lyme disease are quite prevalent.
In Kaleigh's case, the illness has had debilitating effects, including cognitive, hearing and eye problems, mood swings, anxiety and depression.
She was diagnosed with the illness just a month and a half after complaining of anxiety attacks last May. In her case, there were no ticks, no bulls-eye rash on her body, which often are the first tell-tale signs mentioned on Lyme disease Web sites. She felt she was lucky to be spared the months and sometimes years of misdiagnoses that had plagued others she has met.
Kaleigh was given a three-week treatment of Doxycycline and told that she should be able to return to her normal routine soon after.
"I took these pills and I was, like, ‘Thank God we know what is wrong with me.' It was a huge wave of relief," Kaleigh said.
Unfortunately, she was just beginning a long, frustrating journey to wellness.
Though she was "functioning," Kaleigh said she still wasn't back to normal after she finished the prescription. She still had the anxiety and tingling in her hands and feet that had dogged her before she was diagnosed.
She had headaches that she compared to bad allergies.
"It's that, but multiplied by a hundred. (These) weird foggy brain feelings. The disease can affect you in so many aspects," she said.
Her doctor doubled her medicine and prescribed it for three months. Kaleigh was a lifeguard for the summer and developed burns on her skin because a side effect of the prescription is an increased susceptibility to ultraviolet rays. In addition, she had nausea and vision problems, she said.
Holly Ahern, Kaleigh's mother and an associate professor of microbiology at Adirondack Community College, scheduled a visit with a doctor in Mount Kisco who, she said, is a recognized "Lyme literate" physician.
The physician prescribed Zithromax that Kaleigh took until December. Kaleigh said she felt better but then reached a plateau, so he increased her dosage.
Kaleigh felt well enough to perform community service during a school trip to New Orleans but became increasingly fatigued by the end. Upon her return, she went on yet another antibiotic, Minocycline, that had bad side effects, including contracting encephalitis, she said.
Holly believes that the antibiotic was doing what it was supposed to by killing the bacteria in Kaleigh's brain - but the immune response was a "massive inflammation," prompting the encephalitis.
Her doctor stopped the oral antibiotics and asked her if she was ready to have them administered intravenously. It was an option that was presented to her earlier, but she resisted then and now because her activities, like swimming, would be severely limited.
"I remember seeing movies about kids with chronic Lyme and thinking I was so glad I was going to be fine in three weeks. Then I had the realization that nobody really knows how to cure you," Kaleigh said.
Holly has done extensive research on Lyme disease and feels the CDC guidelines put forth for diagnosis are "unacceptable."
"Currently in this area, there are two standards of care when it comes to Lyme: one in which patients are diagnosed and treated until they get better; and the other where people are treated for three weeks with antibiotics - and if you don't get better, then there must be something else wrong with you, or perhaps you are making it up. Patients are told they do not have Lyme disease because they don't meet a strict set of criteria and then don't get treated until the bacteria have spread to body locations from which they may never be eradicated," Holly said.
However, Dr. Paul Mead, chief of Epidemiology and Surveillance Activity for the CDC, said the disease is diagnosed based on symptoms, objective physical findings and a history of possible exposure to infected ticks and that their treatment criteria is what has been recommended by the Infectious Disease Society of America.
He disagreed with Holly's assertions.
"The Lyme test is a serologic assay, and like serologic tests for other infectious diseases, it takes several weeks to develop detectable antibodies. Therefore, it's of limited value early in the course of infection. Competent physicians should know this. If the test were to cause patients with early infection to go undiagnosed, it's not because the test is inherently bad, but because it is being used incorrectly," Mead said. "We have reviewed those guidelines (by the Infectious Disease Society of America) and we believe they represent the best currently available state of the art for diagnosis and treatment of Lyme Disease."
Kaleigh withdrew from college in December to focus on getting well. She said she is "done" with doctors and conventional treatments. She has changed her diet and has eliminated all sugar. She eats only whole foods.
Holly believes the long-term antibiotic treatments have helped Kaleigh regain about 65 percent of her health but that the drugs can only do so much.
"When you threaten these bacteria, they go into these highly resistant forms. It's well recognized that they literally drop their cell walls and go intracellular. So when you hit them with certain types of antibiotics, they hide. They're hiding in Kaleigh's central nervous system," she said.
Kaleigh is now focusing on an alternative form of therapy and wants to return to Union and her swim team in the fall. Her goal is to get back to where she was physically when she was using the antibiotics and continue her alternative therapy for perhaps another year.
She's dealing not only with the illness but also the emotional aspects of having a chronic disease that have impacted her social and academic life.
"If I had a broken leg, people would open doors for me. I'm like the walking wounded. No one sees (Lyme disease sufferers). We're under the radar because we have a chronic illness and we're not showing it. It's so stressful to know I can't do anything about what's happening. But I'm optimistic. I will be cured," Kaleigh said.