Cathy Literski could tell something was wrong just from her mother's voice on the telephone.
Her mother had learned that a steroid drug injected into her spine for back pain might have been contaminated with a fungus that could cause meningitis. Mrs. Literski had recently had the same type of injections herself, at the same pain clinic in Brighton, Mich. For a moment, neither woman could speak.
"I think we're both terrified that the other one is going to come down with it," Mrs. Literski, 57, said. "She's worried sick about me, and I'm worried sick about her. She's 80 years old, and if she were to come down with it, she would have very little chance of survival."
It will be weeks, maybe even months, before the two women know if they are in the clear, past the incubation period for this type of meningitis, which can cause strokes.
About 14,000 people in the United States are in the same nerve-racking situation: knowing they might have been infected, waiting to see if they get sick. So far, 282 have contracted meningitis, and 23 have died, in a national outbreak linked to a contaminated drug made by the New England Compounding Center in Framingham, Mass. A few other patients have developed joint infections from having the drug, methylprednisolone, injected into knees, hips, shoulders or elbows.
Three lots of the drug, more than 17,000 vials, were shipped to 23 states. The meningitis and other infections are not contagious.
As the case count rises day by day, experts are racing to see if they can determine which patients among all those exposed are most likely to contract meningitis. If they can identify the high-risk patients, doctors can follow them intensively with spinal taps and other tests in hopes of detecting the disease and treating it early enough to prevent its dreadful complications.
As early as Monday, health officials may be able to offer doctors a method to estimate a patient's risk and help decide how aggressive the follow-up should be, Dr. Marion Kainer of the Tennessee Health Department said on Friday during a telephone conference.
In Tennessee, which has had more cases and deaths (69 cases and 9 deaths as of Saturday) than any other state, the State Health Department has found that one lot (06292012@26) infected more patients than others, and that the older the medicine when it was given and the higher the dose, the more likely a patient was to get sick. But Dr. Kainer emphasized that another lot (08102012@51), more of which went to other states, also appeared to be heavily contaminated and risky. She said researchers thought older medicine was riskier because the fungus was multiplying in the vials and making them more dangerous.
The earlier treatment begins, the better. Doctors do not want to wait until patients become seriously ill -- but they say they must also avoid treating people who are not infected, because the drugs have severe side effects.
Yet doctors responding to the outbreak say it can be extremely difficult to determine whether symptoms are getting worse in people who were probably already suffering from chronic pain.
The stress of knowing that they have been exposed to a potentially deadly infection is also making matters more difficult. During the teleconference, one doctor said, "To be real honest, I believe I would have symptoms if I had been told I was given this medication."
So far, most of the meningitis cases have been caused by a fungus called Exserohilum, a type of black mold. People with severe symptoms have been hospitalized and given high intravenous doses of a powerful antifungal drug, voriconazole, that can cause liver and kidney problems, hallucinations and abnormal heart rhythms.
But when the symptoms are mild and a spinal tap finds evidence of early infection, some patients can be treated at home with pills, said Dr. Carol Kauffman, an expert on fungal diseases at the University of Michigan. It is not clear how long the treatment will have to continue.
The medical profession has no experience in treating Exserohilum infections of the nervous system, said Dr. Thomas F. Patterson, chief of infectious diseases at the University of Texas Health Science Center in San Antonio. However, he said that in a meningitis outbreak in North Carolina in 2002, also caused by a black mold, voriconazole cured four of five patients (the fifth died). That outbreak was also caused by a contaminated steroid injected for back pain, also made by a compounding pharmacy (not the New England one).
Mrs. Literski, a retired school guidance counselor, has already had one spinal tap to look for signs of meningitis. It was negative, but doctors warned that the disease could still develop later and that she might have to be tested again. The test is unpleasant, and her mother has declined it.
Mrs. Literski previously tried spinal injections for disc disease, without success. She then had two back operations, but still had severe pain. Desperate for relief, she tried the injections again in August and again on Sept. 20.
On Oct. 3, before hearing about the meningitis outbreak, she woke up with a severe headache and a stiff neck. She does not commonly have headaches. Two days later, on a Friday, she heard about the outbreak. That weekend, she had a headache, nausea and dizziness, and very early on Oct. 8, when she got up to use the bathroom, she passed out, something that had never happened before.
She went to the emergency room, where doctors performed a spinal tap and told her the results were normal. But they said she should come back if her headache worsened.
So far, the headache has not worsened, but it has been severe, she said on Friday.
"I don't want to be tested again unless I have to," she said.
She has consulted a lawyer, Alyson Oliver in Rochester, Mich., who said that about a half dozen other patients had also contacted her.
Mrs. Literski said she felt "terribly guilty" because her mother, who previously had the injections and thought they helped, had planned to get them at a different clinic, until Mrs. Literski talked her into switching.
"I was the one who encouraged her to come to the Brighton facility so I could be with her," Mrs. Literski said.
She added: "I'm concerned that my mother isn't sharing symptoms because she's terrified to have a spinal tap."
For herself, Mrs. Literski said, the only option seems to be to wait and see.
She said, "It's like an ominous cloud following me around every day, sapping the joy out of life because you're waiting to find out if you have a deadly disease festering in your body."
Source: New York Times-Nov. 2, 2012 at http://www.nytimes.com/2012/10/22/health/meningitis-risk-haunts-14000-people.html