Living with Lyme

Taryn Hafner Hullsiek cuddles with her dog Zoe. Hullsiek suffers from Lyme disease.

Taryn Hafner Hullsiek cuddles with her dog Zoe. Hullsiek suffers from Lyme disease.

— 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.

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