Antibiotic Caused SJS and Permanent Brain Damage

Sacramento, CAMaribeth took Bactrim for a simple cold three years ago. The antibiotic caused Stevens Johnson Syndrome (SJS), which left her with permanent brain damage that affected her speech and emotions. "I may never; I may never feel what other people feel," says Maribeth, who has a BA in English and an associates degree in graphics—she is now collecting social security disability insurance.

"By the time my parents found me in my apartment I was in a coma," says Maribeth. "I don't remember details but I do know that I was covered in a rash and completely swollen from head to toe. My parents called 911 and during the ambulance trip to hospital I stopped breathing, but I didn't get CPR right away.

"I was hooked up to so much equipment in the ICU and I was on a plastic mattress because my skin sloughed off. They had to put ointment in my eyes--luckily I am not blind. But SJS developed into TEN and I was in serious trouble.

"All of a sudden my organs shut down. My liver, kidneys and bone marrow stopped functioning. I was still in a coma and woke up during kidney dialysis; I still wasn't awake because I thought they had hooked me up to a hot-water heater; I couldn't make any sense of it because the swelling also occurred in my brain. When the swelling went down I had an MRI and was diagnosed with temporal parietal brain damage and encephalopathy."

Encephalopathy can occur when there isn't enough oxygen to the brain or when the altered mental state accompanies another primary diagnosis such as chronic liver disease, kidney failure, or more.

Maribeth's speech is slurred and she says it is difficult to feel any real emotion, good or bad. "It's like I am sitting in a room and can only use my eyes; there is no thought process going on," she says.

"The doctors told my parents that the sulpha in bactrim caused SJS/TEN. I had an allergic reaction years ago on the ski lift when someone gave me a cold med similar to Bactrim. But I thought it was just a regular antibiotic and you trust the doctors, so I didn't think anything of it.

"It was really hard for my mother to see me dying—I was only 53. One doctor told her that only one in 10 people worldwide who survived SJS/TEN caused by bactrim will survive. I am Greek Orthodox and the priest came into my hospital room and prayed at the request of my parents, but I don't remember that either.

"Now, whenever I need to take any kind of medication, I call my pharmacist first and double-check. I'm afraid of taking anything. And it's very confusing: sometimes when a drug brand is changed, they are supposed to attach a green band to the label; it is the same med but made by a different manufacturer. Often the label is missing yet the drug looks different.

"Every time I open my mouth you can tell right away when I talk that I have brain damage. And every time I saw my doctor, he said it won't get any worse. But the last time I had a physical, he said it is getting worse. 'You're on the other side of the grass now,' he said, meaning that I'm not buried. But I told him that I want to mow the lawn…"