The woman’s phone pinged, and she glanced down to see the message: “The bulge is bigger,” read the text, “and it hurts.” She hurried upstairs to her 22-year-old daughter’s room. On the young woman’s left hip was a patch of pink about the size of a golf ball. Just below her prominent hip bone where the skin should have dipped inward, it now bulged a little outward.
She had been on and off antibiotics for an infection that first showed up on her lower belly a month earlier. When that happened, they went to see Dr. Robert Figura, the young woman’s primary-care doctor. It was October 2020, and they were in Glenview, Ill., a Chicago suburb. Covid-19 was rampant in the city and throughout the state; just going to the doctor’s office had become a terrifying act of last resort. But this red bulge was also pretty scary. Figura ordered a CT scan, which showed an infection in the young woman’s pelvis and abdominal wall. She took two antibiotics for two weeks, and it seemed to clear up. The redness, the swelling and eventually even the pain disappeared.
But not for long. A few days earlier, her left hip began to hurt. Figura started her on a different antibiotic, but it didn’t help. Then the bulge reappeared and kept growing. When it got to be the size of a tennis ball, Figura agreed — it was time to go to the hospital.
Recounting a Truly Awful Year
It was late afternoon by the time the women reached Northshore University Hospital in Evanston. The mother wrapped a supporting arm around her much taller daughter’s waist as they entered the facility.
The emergency-room doctor looked through the young woman’s medical records before going in to see her. She had a fever of nearly 103 degrees and what looked like a pretty straightforward skin infection, but the quick review of her records revealed a more complicated story. She had just been treated for an infection. One month earlier she was treated for an infection around her fallopian tubes that extended into her abdominal wall. Now she appeared to have another infection.
But even beyond that, she wasn’t the normal healthy athlete she appeared to be. Five years earlier she was diagnosed with a rare autoimmune disease called pemphigus. This disease causes deep, painful blisters. She had a single attack when she was 17 and was treated with a powerful immune-suppressing medication called rituximab every six months ever since. She was also taking prednisone, a second immune-suppressing medication. And judging from the notes in her records, it looked as if she’d done well, at least until recently. So this was a recurrent infection in a young woman whose immune system was already compromised. Even before the doctor went in to see her, it was clear that she would need to be admitted to the hospital to get intravenous antibiotics, because the ones she’d already tried had failed her.
But it was more than this newest infection, the young woman’s mother explained to the many doctors who came to see her daughter during her next several days in the hospital. Over the past year her daughter — who was never sick, except for that one episode of pemphigus — had been repeatedly ill. She had a series of painful attacks that her doctors initially attributed to a flare-up of her pemphigus. But testing showed it wasn’t that. The first attack was nearly a year earlier and was in one of her ovaries. She was stuck in the hospital on antibiotics for nearly a week. Afterward she still didn’t feel well. They took out her IUD, the small device placed in the uterus to prevent pregnancy; that didn’t help, either.
Then she developed painful ulcers and infections in and around her urinary tract. That was the worst. The pain was so terrible that, at one point, the young woman completely refused to drink anything so she wouldn’t have to pee. Her gynecologist put a tube into her bladder so she could urinate without the pain; that helped, but was its own kind of horror. No one seemed able to figure out what she had. It wasn’t the pemphigus, but when you have one disease of the immune system, you are at much higher risk of developing a second. So in addition to antibiotics, she was started on two more immune-suppressing drugs. Her doctors had been slowly tapering them off these past few months. She had just begun to feel well again when the new set of problems erupted.
Two Notable Factors
It was, she was told, just a cellulitis — an infection in her skin. She was treated with intravenous antibiotics and finally sent home with two other antibiotics. The young woman was discouraged and depressed. Sure, she was better now, but what if it all came back when she stopped the antibiotics, the way it had before? Her mother was determined to find a doctor who could get to real answers. A relative suggested an infectious-disease doctor she saw the year before, Dr. Brett Williams. He was in Chicago, at Rush University Medical Center.
She made an appointment for her daughter to see him the following week. Before the visit, Williams reviewed the medical records. It had clearly been an awful year. But as he made his way through her complicated history, two factors stood out to him. First, she got better when on antibiotics, but when they were stopped, the infection seemed to come right back. It wasn’t just that she felt worse. Within weeks or even days of ending her course of antibiotics, she developed fevers and other objective evidence of a new or worsening infection. That was unusual.
Second, it looked as if all these issues started after she got an IUD. These devices are very effective and quite safe, though when they were first approved, there were concerns that they might increase a woman’s risk of pelvic inflammatory diseases (P.I.D.). More recent studies have shown no increased risk. Some types of IUDs may even reduce the risk of infection. The most common causes of P.I.D. — with or without an IUD — are gonorrhea and chlamydia. She didn’t test positive for either of these infections. Besides, they are usually quite responsive to the antibiotics she had already been given.
But there is one unusual bug that could account for both of these oddities. It’s a bacterium called actinomyces. This organism normally lives in the mouth and colon and sometimes the vagina. It has been associated with P.I.D. in patients with IUDs. It’s an aggressive bug and can spread throughout the body. If not thoroughly wiped out, it can come back again and again. Williams was hopeful that this would turn out to be what she had, because it is completely treatable.
The Secret Is Time
When Williams finally met the patient, he was reassured by how well she looked. She was still taking two antibiotics — Augmentin and Doxycycline — and all of her symptoms were gone. She had no pain, no fevers. But she was tired. She could sleep for up to 12 hours, and she was too tired to even want to exercise — something that had always been an important part of her life. The secret to treating this organism, Williams explained to mother and daughter, is time. It takes much longer to treat actinomyces than most bacteria. For an extensive infection like this, one that had spread from her uterus through her pelvic wall into her thigh, she would need at least six months of antibiotics.
The patient took Doxycycline for a year, finally stopping last fall. The infection hasn’t come back, and Williams is hopeful that it won’t. And the patient is thrilled to be back to her usual workout and volleyball routines. I asked him why this diagnosis was so easy for him to make after stumping so many others. “It’s a bug that’s just rare enough so that internists won’t see it but common enough so that infectious-disease docs like me will run across it pretty regularly,” he replied thoughtfully. “And that makes all the difference.”
Lisa Sanders, M.D., is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries.” If you have a solved case to share, write her at Lisa.Sandersmdnyt@gmail.com.