NASHVILLE, Tenn. – A week after her annual steroid shot for back pain, Janet Russell began getting unbearable headaches. A fever followed. Doctors admitted her to the hospital, but couldnt say what was wrong.
She is screaming and nothing is helping. They have already given her medication, but nothing is helping, said Russells daughter, Tracy Barreiro. It continually escalated.
Unexplained pain and confusion about its cause are troubling patients like the 71-year-old Russell, diagnosed with a deadly fungal meningitis likely contracted from a custom-made steroid shot, and medical professionals who have little experience treating the rare disease.
Russells husband, Robert, said his wifes doctor told him early on, You can call it meningitis, you can call it anything you want to, but quite frankly, nobody, not anybody in this country, knows what it is at this point because we have never seen it.
They didnt really tell us it was a fungal meningitis until the CDC told them, he said.
The Centers for Disease Control and Prevention said five people have died as of Friday in the outbreak and 47 cases in seven states have been reported. Investigators have focused on a steroid custom-made by a specialty Massachusetts pharmacy as the source.
At least 29 cases are in Tennessee, and three people there have died, including the founder of an inner-city Christian center for at-risk children in Nashville.
State health officials trying to contain the outbreak are contacting about 1,000 patients who received epidural steroid injections at three clinics between July 1 and Sept. 28.
Russell was one of them, her family said, receiving her last back pain shot Aug. 30 from the Saint Thomas Outpatient Neurology Center, which got 2,000 vials of the injectable steroid from the New England Compounding Center in Framingham, Mass.
The suburban Nashville woman is hospitalized in intensive care, can only say a few words and has trouble keeping down even water. She suffered a brain hemorrhage last week, family said.
She first started to have headaches and neck pain a week after the last injection, family said. No one thought it was related to the injections. Never in your wildest dreams do you think its related to that, Barreiro said.
She went to the hospital emergency room on Sept. 7, but was sent home with pain medication and a diagnosis of flu-like symptoms. Three days later, she returned to the hospital; the pain got worse.
Her headache progressed to the point of unbearable, said Teresa Russell, another daughter. We were all frantic at that point, to get her some kind of relief. ... Every day we were asking doctor after doctor, `What is this and what are we going to do?
Doctors first suspected bacterial meningitis, requiring her family to wear protective clothing when they visited her, Robert Russell said.
Its something that we have never had to deal with and its something that a lot of people dont know anything about, including myself, Russell said.
Saint Thomas Hospital, where Russells family said she is being treated, declined to release information about individual patients, citing medical privacy laws. The neurology center voluntarily closed last month because of the investigation and isnt commenting.
A third fungal meningitis patient died in Tennessee on Wednesday at the same hospital, according to the facilitys chief of medicine, Dr. Robert Latham. The patient was identified as Diana Reed by a family lawyer. The attorney, Bill Lassiter, wouldnt discuss when the 56-year-old woman became ill or when she received steroid injections.