Pain is no stranger to Traci Maccoux.
For years, the 22-year-old Brooklyn Park woman has relied on medical devices and injections of a steroid medication to deal with back pain from a chronic neurological condition.
But this summer, two of those shots brought a side effect no one expected.
Health officials say Maccoux is one of 11 Minnesotans -- and 438 people across the country -- with a confirmed case of fungal meningitis that has been linked to contaminated medications from a Massachusetts drug maker. Nationwide, 32 people have died in the 19-state outbreak.
"It was scary," said Maccoux, whose case was confirmed in mid-October. "You know that you're on that list of people who got the injection and could die."
The cases have been linked with medications from a company called New England Compounding Center. A co-owner of the pharmacy as well as federal and state pharmacy regulators have been asked to testify Wednesday, Nov. 15, before a congressional committee that's investigating the outbreak.
In the meantime, patients and their doctors find themselves on an uncertain path as they battle a highly unusual type of fungal meningitis.
"It's never been reported before," said Dr. Carol Kauffman, an infectious-disease expert at the University of Michigan. "These are uncharted waters."
Since the confirmation came about a month ago, Maccoux has been hospitalized twice for a total of two weeks. Her second stay ended this month, but Maccoux said she's still not feeling well.
"It's just an overall, general weakness," she said Thursday, Nov. 8. "I have a little bit of a headache, but not a huge one. I'm just laying in bed -- that's all I can do."
Maccoux is considering legal action in the case, said her attorney, Fred Pritzker.
Fungal infections linked to the implicated steroid medication have produced an unusual form of meningitis that health officials say should not be confused with the more common viral or bacterial forms of the
illness. One key difference is that there's no risk of person-to-person transmission of fungal meningitis.
Nationwide, about 45 percent of the outbreak cases have been reported in Michigan and Tennessee. and those states have reported more than half of the fatalities, according to the U.S. Centers for Disease Control and Prevention.
As of Friday, nine states had more confirmed outbreak cases than Minnesota, where no deaths have been reported.
After investigators started learning about the outbreak in late September, CDC assembled an expert panel to advise doctors on the difficult task of treating patients with the disease, agency spokeswoman Melissa Dankel said.
"We're definitely in new territory here," Dankel said.
One of the recommendations calls for treatment with a drug called voriconazole. Unfortunately, the medication brings a significant risk of liver damage and neurological side effects, including hallucinations.
Doctors prescribing the drug must initially give it in high doses to ensure sufficient amounts of medicine reach the central nervous system, said Richard Danila, an epidemiologist at the Minnesota Department of Health. The guidance now calls for patients to receive the drug for three months, but it's unclear what should happen after that point, Danila said.
The complexity of prescribing the drug is just one of many complicating factors with the outbreak.
"The vast majority of patients were pain-management patients, which means they have a whole variety of symptoms and conditions that are chronic and painful," Danila said. "So, they already typically have a complicated history, for the most part.
"Then you inject a fungus directly into the epidural space, or puncture the dura matter and put it directly into the spine or cerebral spinal fluid. We've had virtually no experience in this whatsoever."
That provides little comfort for patients like Traci Maccoux, who at age 22 already has had plenty of experience with discouraging diagnoses.
Maccoux suffers from reflex sympathetic dystrophy, a condition that's abbreviated as RSD. It's a nerve disorder, she said, where the brain misfires pain signals to parts of the body that aren't actually injured.
During middle and high school, Maccoux was a competitive swimmer. But the condition limited her training as flare-ups kept her out of the pool for weeks at a time.
"It hurts so bad that I can't even put my leg in the pool," she said. "It hurts to have wind blowing on it."
Initially, Maccoux received numbing medication in her spine to treat the pain. After a few years, she received two implanted medical devices called spinal cord stimulators that use electrical energy to block the pain.
This year, Maccoux was having the stimulators replaced. So, she wanted to find a clinic where she could resume getting steroid injections and went to Medical Advanced Pain Specialists (MAPS) in Maple Grove.
The two injection treatments she received at the clinic worked well in blocking the pain, Maccoux said. Then, in late September, the contamination issue surfaced since MAPS operates four of the six clinics in Minnesota that received the implicated steroid.
When the state health department first called her, Maccoux wasn't worried because she wasn't experiencing meningitis symptoms that day. Outbreak patients have complained of severe headaches, sensitivity to light and stiff necks; some have experienced stroke symptoms such as weakness and difficulty with speech.
There were other times in late September and early October when she didn't feel well, but Maccoux attributed those symptoms to her chronic health problems and a recent back surgery. In September, Maccoux underwent an operation so doctors could remove her spinal cord stimulators and insert a "spacer" device that would allow surgeons to install a new stimulator down the road.
By Oct. 10, Maccoux was feeling horrible and went to Mercy Hospital in Coon Rapids. After undergoing a spinal tap test that confirmed the fungal meningitis, Maccoux spent 10 days in the hospital as doctors started treating her with the anti-fungal medication.
Doctors also had to surgically remove the spacer device because of the infection. Without the spacer, it is doubtful surgeons will be able to install a new spinal cord stimulator for her leg pain, said Cathy Maccoux, Traci's mother.
Maccoux said she's upset with New England Compounding Center for what's happened to her. She also blames the local MAPS clinic because the Massachusetts company -- called NECC, for short -- didn't have a license to sell medications in bulk to clinics in Minnesota, according to the state Board of Pharmacy.
In a statement, Marsha Thiel, the chief executive officer of the local pain clinic, said: "This very serious issue stemming from the product provided by NECC is extremely unfortunate for all parties involved."
Doctors don't know how long Maccoux must take the anti-fungal medicine. There's no single lab test that makes it easy to monitor whether the treatment is working. And doctors are trying to find a sweet spot with Maccoux's treatment where she's getting enough drug to fight the meningitis, but not so much that the medication makes her seriously ill.
"It's not like you have studies that say this amount works because, again, we haven't seen this before," said Kauffman of the University of Michigan.
"It's variable," Kauffman said of the effectiveness of treatment. "Some patients have done well. Others have come back in with disease elsewhere."
Voriconazole is expensive. Just one pill can cost $70, said Cathy Maccoux. She wishes the hefty price tag brought with it more clarity.
"That's all I hear: 'We don't know,'" Cathy Maccoux said. "I'm the type of person who likes to know things. If only I had a dime for every time I've heard them say 'We don't know.'"