You’d never know Taryn Hafner Hullsiek has a debilitating disease.
The former Cicero-North Syracuse High School athlete could once swim five miles. Now there are days she can’t get out of bed.
Hullsiek, who now lives in Madison, Wis., has chronic Lyme disease, a diagnosis she finally received after seeing more than 30 doctors over five and a half years.
“It’s changed my life in every way possible,” Hullsiek said. “Living day to day, your expectations of what your live was going to be, everything across the board — having a family, having a career, all those things. It’s a tough pill to swallow.”
Lyme disease is transmitted by the bite of the tick. Reported in 49 U.S. states, it’s most prevalent in the Northeast, North-central and Pacific coastal regions. Lyme disease is most commonly associated with a bulls-eye rash on the skin, but such a rash is not always found with the illness; a significant number of sufferers don’t recall either a rash or being bitten by a tick. Hullsiek doesn’t.
Since Lyme is a multisystem disease, the list of symptoms is long, and it is common to see symptoms affecting multiple systems. Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems. Chronic Lyme disease can render people completely disabled. It’s often confused with illnesses like MS, Lou Gherig’s disease, fibromyalgia, chronic fatigue syndrome, Parkinson’s disease, arthritis and other neurological disorders.
Hullsiek first started getting sick in the winter of 2006 while living in Jackson Hole, Wy., with her husband, John, who is in the military.
“It started so slowly for me. For some people, it’s a little more obvious,” she said. “For me, it started with a loss of sleep. I wasn’t sleeping as well. I wasn’t able to handle as much activity as I was doing. I was 23 years old. At first, I thought maybe I was just getting older. I was having hard time keeping up. I just pushed through it. The thought of illness never crossed my mind.”
That summer, Hullsiek returned home to work for her parents, Chuck and Linda Hafner, at Chuck Hafner’s Farmers Market in North Syracuse, still suffering from flu-like symptoms. Finally, her mother took her to the doctor, where she was diagnosed with an extreme case of mononeucleosis.
“Initially, we were pretty comfortable that she did have mono,” Linda Hafner said. “The odd thing was that somebody with mono sleeps all the time, and she didn’t sleep.”
Hafner said her daughter was tested at the time for Lyme disease, but the test was negative.
“[That’s] very common,” Hafner said. “Evidently, the longer you have it, the harder it is to show up, and if you’re lucky enough to get one of those bulls-eye rashes, that’s how they know for sure. Even now, in the course of the last year and half since we’ve know, you could even test negative and have Lyme. That’s really scary.”
At the time, the family accepted the mono diagnosis without a second thought.
“For a long time, we all just thought I had a bad case to mono with some weird things that were kind of atypical, like I just wasn’t sleeping,” Hullsiek said. “The doctor told me it would be a while, because I had an extreme case, so I wouldn’t bounce back right away. I did get a lot better after a few months, and I thought I was on the road to recovery. So I started living a more functional life. I started working again. That lasted six months. It made me incredibly sick again, more so than the mono had. I finally crawled out of that, and just kept going up and down and up and down.”
That began Hullsiek’s long journey. She started seeing doctor after doctor, searching for answers to why she was still so sick — and getting sicker.
“I finally got a diagnosis of chronic fatigue syndrome. I had many, many diagnoses, but I clung to that one,” she said. “I was told by certain doctors that it didn’t exist. They said I was severely depressed and I should get to a psychiatrist.”
Doctors’ reactions to her illness, Hullsiek said, made her feel even worse.
“That was the hardest part – not feeling validated,” she said. “I really did start to question it. Am I crazy? If they can’t find anything, maybe I do just need to push through it. So I tried to push through it, and I got more and more sick. It was the worst head game.”
The turning point came at Thanksgiving of 2011. Hullsiek was at her parents’ home in North Syracuse for the holiday.
“She was upstairs in her bedroom. I was downstairs, and my cellphone rings, and it was her,” Hafner said. “She was crying. I ran upstairs to her, and she said, ‘Mom, I am so sick. I don’t know what’s wrong with me. I hurt so bad.’ She would say two things: She felt like she had the worst case of the flu and an elephant was sitting on her body.”
At that point, the family was desperate for answers. Hafner, who had just written a cookbook, happened to find them in an unlikely place: at a book signing.
“I was at a book club, and the person that I was doing the book signing for, I was at their house. Their neighbor’s son had very similar symptoms to Taryn. I started talking to her and she said, ‘I bet she has Lyme disease,’” Hafner said. “She had been listening to the Diane Rehm show on NPR one day, and this doctor in Virginia was on and he was talking about all the symptoms, and it was everything her son had. So she took her son down, and sure enough, he had Lyme disease. He’d been in treatment a little over a year when I met her.”
Hafner called the doctor’s office and was able to get an appointment for the following Tuesday. After three hours and numerous tests, the physician was sure Hullsiek had Lyme disease.
“I just said, ‘Whatever. I’ve been to 30 doctors. Why are you going to be the one that figures it out? No one else has,’” Hullsiek said.
But a few weeks later, the doctor’s office called with a firm diagnosis of Lyme disease.
“It was like all my dreams coming true in the most twisted way,” Hullsiek said. “It sounds so crazy, but having the diagnosis was an absolute dream come true at first. Now six months into treatment, it’s harder than I ever imagined. Sometimes it’s harder than the illness itself. But in that instant, I was on Cloud 9. I was euphoric.”
Now, Hullsiek is in treatment for the disease, which she said some people compare to chemotherapy.
“Antibiotics are the main thing. They’re making me more sick,” she said. “They wouldn’t be making me sick if I didn’t have bacterial Lyme. When you’re taking antibiotics, it kills the bacteria, which releases toxins into my body. That generates an immune response, which makes me really sick. But the sicker you get, the better your chances are for recovery. The disease is dying. The antibiotics are doing their job. It’s just hard to know you’re going to be in this treatment for multiple years.”
Despite the difficulty, Hullsiek is optimistic about her future.
“It’s a slow but steady incline. It’s a lot of ups and downs,” she said. “I am getting better. I believe I’m going to get better, and that’s the most important part. You have to take each day as it comes, and that’s what I’m trying to do. My doctor said it will be about three years that I’ll be in treatment. Lyme is different for each individual, so they’re very careful about giving a prognosis.”
In the meantime, she urged vigilance to ensure that cases of Lyme didn’t get a chance to become chronic like hers.
“When people talk about Lyme, a lot of people will say, ‘Oh, my cousin had it and got treated and he’s fine now,’” she said. “That’s the most important thing: Do not mess around. This is not a wait-and-see thing. An ounce of prevention is worth a pound of cure. If you have any suspicion you’ve been bitten by tick, get on antibiotics right away. If the disease is allowed to go chronic, it’s beyond the battle of your life. You don’t want to go through this.”
Though the disease has wrought havoc on her life, Hullsiek still feels blessed.
“I feel kind of funny saying this, but I have learned so much from Lyme and having this disease,” she said. I’m happier now than I’ve ever been. It wakes you up to what’s important in life. I will forever be grateful. It gives you a whole different viewpoint.”
How did she gain such an optimistic perspective?
“You have to find happiness,” Hullsiek said. “You reach a point where you say you’re either going to be miserable all the time or you’re going to make the most of your life. I wouldn’t go back through it if you pad me, but I’m grateful that I’ve had the lessons that I have. I don’t have any regrets. I don’t feel like a victim. There’s no ‘why me.’ It’s very clear — this happened, and it changed me for the better. It really made me want to reach out and help people. I have this insight into the sick and the chronically ill that I never would have been exposed to, and I’m glad to have it to be able to help others get through chronic illness. It’s a very different reality. Very few people are aware of it in the healthy world. It’s hard to really understand it. It’s changed me in every way, but I think it’s good to appreciate the little things now much more than I ever did. I certainly appreciate good health. It’s hard not to take it for granted until you lose it.”
To learn more about Hullsiek’s struggle with Lyme, follow her blog at sublymeaware.blogspot.com.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.