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Boston and Beyond

November 24, 2012

Symptoms there, but no meningitis

MINNEAPOLIS — Sarah Hackbarth knows this much is certain: On July 30, she was injected with one of the contaminated steroids that have killed 33 people.

Since then, she has suffered many of the symptoms that she was warned about: headaches, nausea, numbness.

But one thing she doesn’t have is a diagnosis.

Hackbarth, a 24-year-old newlywed from Shakopee, Minn., is one of hundreds — if not thousands — of people trapped in the gray zone of the national meningitis outbreak.

Months after receiving the contaminated injections, they’re still trying to find out if they were infected by a potentially deadly fungus. Many, like Hackbarth, have tested negative for meningitis, yet are struggling with a cascade of unexplained symptoms. And in the absence of hard answers, they fear the worst.

For patients such as Hackbarth, who were living with pain before this happened, it has turned into an endless ordeal. “Any headache that you have, any mild fever that you have … it terrifies you,” she said. “Nobody can give me a straight answer.”

Even the experts admit that they’ve been baffled by the unfolding outbreak. Just last week, Minnesota reported its 13th confirmed case tied to the steroids — in a young woman who tested negative for meningitis. When doctors discovered that she had a bone infection instead, it was a reminder of what an elusive culprit they’ve been chasing.

“This is all new to us,” said Dr. Tom Chiller, a fungal disease expert with the U.S. Centers for Disease Control and Prevention. “Unfortunately, we’re still learning as we go.”

Hackbarth and her husband, Jake, were on their honeymoon when they learned that she might be in danger. They were married Sept. 29 and had left for the North Shore of Lake Superior — oblivious to news reports about the emerging outbreak of meningitis, a dangerous inflammation of the brain or spinal cord, and its link to steroids from a Massachusetts production facility, the New England Compounding Center, or NECC.

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