Fungal Meningitis Patients: A Long Road to Recovery

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Updated: 1/09/2013 12:10 pm

Dec. 26, 2012 -- Johnnie McKee thought she was out of the woods.

McKee, a 72-year-old grandmother of four from Bethpage, Tenn., was one of nearly 14,000 people who found out this fall that they'd been exposed to tainted medications made by the now shuttered New England Compounding Center.

In her case, the threat came from a steroid shot that she'd had on Sept. 7 to relieve some nagging back pain.

"We got a letter. We were told that if we could make it 28 days, that we'd be clear," says Fred McKee, her husband of 51 years. "We watched it and worried about it," says Fred, his voice filling with emotion.

But Johnnie felt fine. She didn't have any of the symptoms they were told to look for -- headaches, nausea, fever.

The waiting period passed, and she felt good enough to get back to her yard, which she had always tended with great care. "She mowed the lawn," says Fred.

Then, on Oct. 8, the pain hit like a bolt of lightning at the base of her spine. "It was just excruciating pain," says Fred. Their surgeon told them to drive to the emergency room at St. Thomas Hospital in Nashville, where doctors had started to treat a wave of patients who were battling a rare type of fungal meningitis, an infection of the brain and spinal cord.

"There were three criteria they looked for to determine if you have fungal meningitis, and she met all three," Fred says.

Still, he says, they didn't worry. But that may have been because they didn't understand what was coming.

"I don't think we really realized that we were really getting into a two- to three-month hospitalization period and a six-month-to-a-year complete recovery," he says.

An Outbreak Without Precedent

Since the outbreak began, 620 people have been infected and 39 have died in 19 states. No one has been cured.

"As far as we know, no one has been taken off medicines, and we wouldn't recommend that now; it's still too early," says Tom M. Chiller, MD, MPH, deputy chief of the Mycotic Diseases Branch at the CDC in Atlanta.

Many hope they are on the road to recovery, but no one can tell them when it will end.

Experts say they've never seen these kind of fungal infections, much less this many cases.

"It's very difficult for the doctors and the patients because we can't say, 'Well, just two more weeks of this and it will be over.' What we're saying is that we're going to keep treating you. We're going to keep caring for you, and when the experts tell us we can stop, we're going to do that," says William Schaffner, MD, an infectious disease specialist at Vanderbilt University in Nashville.

What's worse, though the pace of new infections has slowed, doctors continue to find more. 

Based on previous experience, doctors had expected that they could see new cases of fungal infections cropping up as long as four months after patients received their tainted meds. Since the contaminated steroid shots were recalled on Sept. 26, that would mean that people who had been exposed could be in the clear by late January. But even that timeline is shifting.

"We've got incubations now of documented cases beyond 120 days. I just heard of one the other day that was 125. The question now is how long can these sit before they manifest?" Chiller says.

"I don't think we're done yet. I don't think we're at the end, but I certainly hope we're close," he says.

A Second Wave of Infections

Since her diagnosis, Johnnie has been hospitalized three times. Twice she was admitted for more than a month.  

In November, doctors found a new pocket of infection deep in her back that was pressing on her spine.

She wasn't the only one.

"About a month ago, it became evident that in addition to meningitis, a second problem was developing," says Schaffner. "That was these abscesses in the tissue where the epidural injections had taken place."

The abscesses were happening to patients like Johnnie who were already exhausted by a fight with meningitis. But they were also cropping up in otherwise healthy people who thought they were in the clear.

"They're so deep and there's so little active inflammation that the skin is smooth. It's not red. It's not puffy. There's no drainage on the surface of the body. So they have to be detected internally," usually with an MRI, Schaffner says.

Diagnosis of the abscesses can be difficult.

"They can present with symptoms, most commonly pain. However, these people had pain there to begin with, and they frequently cannot distinguish pain and pressure from the abscess from the sort of nerve pain that they had before," he says.

Johnnie had surgery to remove her abscess. "That's when she really began to get better," says Fred.

She came home in early December, expecting to stay. But last week she was rushed back to her local hospital. The powerful antifungal drugs that she and other patients will need to take for up to a year had caused her potassium to drop to dangerously low levels.

After days on an IV to get her stabilized, she was allowed to come home, just in time for Christmas. Fred expects they won't do much this year. "But we'll have our family together. I got my wife here. That's about all I need."

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