Spinal tap patients worry about fungal meningitis

• Anxiety over tainted steroid shots grows
• Patients check for meningitis symptoms
• Doctors urge patients to curb stress

NASHVILLE -- It was a Hollywood-worthy medical mystery, the stuff of films such as Outbreak and Contagion, playing out in a Vanderbilt University hospital room between a smart young doctor and the patient she couldn't cure.

Dr. April Pettit, a 34-year-old internist, agonized over why an autoworker from Smyrna, Tenn., otherwise healthy, wouldn't respond to antibacterial medicine for meningitis. Instead, Thomas Warren Rybinski, 55, felt worse every day, losing consciousness as the symptoms wracked his body, his family frantic and looking for answers.

A spinal tap had revealed nothing about the source of the infection, so Pettit ordered a second one. But instead of looking for bacterial meningitis, she told the lab, look for the fungal kind, the kind her initial prescription couldn't touch.

Pettit's gut was right -- the first break in what she learned later wasn't just one mysterious case but a nationwide disaster that, by Monday, had claimed nine lives and sickened 105 other people, the toll creeping up daily.

Aspergillus, fungal meningitis, was thriving in Rybinski's spinal fluid.

"It was very surprising and is an unusual cause of meningitis in healthy people," Pettit said. "When we got that result, we went back to the patient and the patient's family to try to figure out if he had done anything unusual or been anywhere unusual in the weeks before he became ill."

They told her the devastating truth -- about 19 days earlier, Rybinski had received a spinal steroid injection at Saint Thomas Outpatient Neurosurgery Center for his chronic back pain. They took him to Vanderbilt with symptoms they never suspected traced back to the shot regimen.

Pettit reported the lab results to the Tennessee Department of Health in an email on Sept. 18. The agency contacted her immediately, then called Saint Thomas.

The news there wasn't good. Doctors were treating two meningitis patients who had received the epidurals. But Saint Thomas had not identified Aspergillus -- a common mold, but one that rarely causes fungal meningitis -- as the cause.

"We had two patients with very similar pictures, both having had epidural steroid injections," said Dr. Robert Latham, an infectious disease specialist at Saint Thomas. "One was bad enough. Now having two clearly rang bells to all of us that something is not right here."

Almost immediately, state health officials suspected steroid medicine from the New England Compounding Center in Massachusetts was the most likely culprit, although they weren't sure. On Sept. 21, they notified the U.S. Centers for Disease Control and Prevention there was a problem.

Federal and state officials began quietly monitoring the situation to determine if the medicine was, in fact, the cause and whether the cluster of infections was isolated to patients who got injections at Saint Thomas. That protocol included having the hospital call to check on every patient who had received an epidural -- without mentioning meningitis.

But knowing the problem wasn't enough. Rybinski, the patient whose case helped a nation understand what was happening, died Sept. 29.

Anxiety spreads

For countless others, the anxiety began two days later, on Oct. 1, when the Tennessee Department of Health went public: A strange illness had killed two people and sickened nine others. It was not contagious, they stressed.

Saint Thomas patients who believed the hospital's inquiries about their epidurals were nothing more than courtesy calls found themselves jolted by news reports.

Thousands of people nationwide who got injections with the recalled medicine are counting the days on their calenders since their last injection.

The wait is agonizing for Sue Manor, 66, of Hendersonville, Tenn., who at first cracked jokes after discovering she was one of the Saint Thomas pain patients who received a steroid injection. But a couple of nights later, anxiety set in, and she packed a bag for a trip to the hospital -- even though she never went.

"I had a couple of days where I had a headache and my neck was stiff," she said. "Intellectually, I knew it was stress bringing it on. But there is the slightest possibility -- or even a good possibility -- that it could be the early onset of meningitis on my system."

By Saturday morning she was feeling better, chomping on blueberry-flavored cereal as a robotic vacuum cleaner scoured the floors of her home, knowing that the vacuum would save her bad back from pain and hoping that the fruit would boost her immunity.

And on Monday, she went to her regular tai chi class at First Baptist Church of Hendersonville, exercising to achieve peace of mind and stay healthy.

That's good medicine, psychiatrists with Meharry Medical College and Vanderbilt said. Actions to alleviate stress and depression -- which are important because those mental conditions can impair immunity -- could include a trip to a movie, a driving tour of autumn leaves or even a tai chi class.

Knowledge decreases stress

They also advise that patients become as informed as possible. Ann Coleman, a nurse from Murfreesboro, Tenn., tried that route but ran into roadblocks.

She looked for medical literature on Aspergillus meningitis to understand how long the incubation period is and found very little. She sought preventative medicines to keep her from getting sick and learned there weren't any.

Coleman also wondered whether her injections came from one of the three recalled lots of medicine, but Tennessee does not require the lot numbers for the steroid medicine be recorded for specific individuals, said Woody McMillin, director of communications for the State Health Department.

But Coleman learned it didn't matter anyway, because all of the Saint Thomas epidural patients within the time window of concern -- which in Tennessee dates back to June 27 -- are believed to have received injections from the recalled medicine.

By Saturday, Coleman had given up on discovering some information breakthrough. She pulled herself away from her computer and baked banana cranberry bread.

Unrelenting stress may require medical intervention with some of the patients, said Dr. Rahn Bailey, a psychiatrist with Meharry Medical College.

"I tell a patient if their stress level is very, very high, they need to get out of the environment," Bailey said, who suggested walks or visits with friends as options.

These actions are important, Bailey said, because medical studies have documented that stress and immunity makes people more prone to illnesses. Dr. Harsh K Trivedi, a psychiatrist with Vanderbilt, said any of the epidural steroid patients who are not functioning normally because of the stress should seek professional help.

"There are many different ways in which the worries that are caused by this particular outbreak could be not just anxiety-provoking but could also lead to things like depression -- as well as sincere concerns about whether you will live or not, which can lead to panic attacks as well," Trivedi said.

However, the incubation period is generally believed to be two days to a month. For Manor, Oct. 18 will mark a month. For Coleman, Oct. 20 is the date.

Virginia Clark of Pegram, Tenn., thinks her prayers may have been answered. Sept. 30 was her one-month anniversary since having one of the injections.

"I still have some concern," she said. "I still wonder."