ELKHART — Feeling unusually lethargic in January, Terry Trost wrote off her melancholy as seasonal depression, but she later found out that it was something much worse.
After five months of lab tests coming back inconclusive, Trost found out in February that she is among 730 people nationwide who have fungal meningitis. The illness is potentially deadly, and it is caused by exposure to tainted back pain medications that were distributed in 23 states from coast to coast. The drugs, manufactured by the New England Compounding Center in Massachusetts, were supplied to six clinics in Indiana, including OSMC Outpatient Surgery Center in Elkhart.
Trost and her daughter, Nicole Kovach, received injections to relieve back pain on Sept. 26 at OSMC. That evening, batches of medications were recalled for contamination.
“I didn’t know what to think,” said Trost, who had been visiting OSMC every few months for the past two years to receive shots near her coccyx bone at the tip of her spine.
But it wasn’t Trost who started feeling sick first. Kovach used a different medication than her mother, but it was manufactured from the same drug company. Not long after the shot, Kovach was taken to an emergency room with a fever and excruciating pain. Lab results for a spinal tap came back negative for fungal meningitis, but she had a bacterial infection that was making her ill.
OSMC contacted hundreds of patients, including Trost, who had been exposed to the tainted batches of drugs. Trost did not show any signs of illness, but she said her physician, Dr. Jonathan Schrock, remained concerned.
“Dr. Schrock was so sure there was something going on,” Trost said.
It wasn’t until December that Trost ended up at Elkhart General Hospital. Her back pain had returned along with throbbing migraines, but once again, tests for fungal meningitis came back negative.
By January, Kovach started noticing a difference in her mother’s behavior. Trost had to pry herself out of bed in the morning. She didn’t want to leave the house. She didn’t want to do anything.
“She kept on saying that it was just depression, and that happens sometimes, but this time, it seemed like more than just depression,” said Kovach, a student enrolled in Ivy Tech’s nursing program who works full-time at a dialysis clinic. “I couldn’t necessarily put my finger on it.”
OSMC ordered one last MRI for Trost in February and this time, the results were clear. She had fungal meningitis.
At last count, local health officer Dr. Daniel Nafziger said there have been 47 cases of fungal meningitis and related infections confirmed in Elkhart County. There have been three deaths attributed to the illness here. Most of the recent cases that have been reported, Nafziger said, are localized infections near the areas where patients received injections. In some cases, symptoms of fungal meningitis have not surfaced until six months after a patient had been exposed to the contaminated medications, he added.
“It’s really a little discouraging that we’re still seeing cases so far out from the time of the injection,” Nafziger said. “One of the problems with new outbreaks and new situations is that it’s difficult to predict how they’re going to unravel.”
Trost is concerned that some people may be blaming symptoms on other health problems like she did, or even ignoring the signs that they may have fungal meningitis.
“There has got to be other people out there who think they’re just depressed or tired or they don’t feel well,” she said. “They probably don’t realize that they need to be checked out because it’s too dangerous not to.”
Trost will be taking an antifungal medication to fight off her infection for the next three to six months, if not longer. She worries about the medication’s side effects. The last time she was on an antifungal drug, she said her hair became brittle, her fingernails broke easily and her skin turned pale. She started taking a stronger dose of the medication this past week. Trost will be checking in with an infectious disease doctor every two weeks in addition to other doctor appointments and tests.
“It’s going to really be a rough road,” Trost said.
Medical bills will soon be piling up, Trost said, but doctors at OSMC have already eased some of her worries. The clinic covered the cost of her MRIs and her initial emergency room visit for a spinal tap, she said.
“They really bent over backwards for me,” she said.
Until she fully recovers, Trost said she will be relying on her daughter to keep her strong and her spirits high.
“If I didn’t have her around, I don’t know what I would be doing,” Trost said. “I think I would cry constantly if she wasn’t there. She’s my rock.”