Lisa Sanders, M.D.,
is a contributing writer
for the magazine. Her
latest book is ‘‘Diagnosis:
Solving the Most Baffl ing
Medical Mysteries.’’ If
you have a solved case to
share, write her at
Lisa.Sandersmdnyt
@gmail.com.Diagnosis
18 5.1.22 Photo illustration by Ina Jang
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 medica-
tion called rituximab every six months
ever since. She was also taking pred-
nisone, 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 doc-
tor 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 moth-
er 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 fl are-
up of her pemphigus. But testing showed
it wasn’t that. The fi rst attack was near-
ly 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 any-
thing 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 hor-
ror. No one seemed able to fi gure 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 addi-
tion 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 fi nally
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 fi nd 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 infec-
tion. That was unusual.
Second, it looked as if all these issues
started after she got an IUD. These
devices are very eff ective and quite safe,though when they were fi rst approved,
there were concerns that they might
increase a woman’s risk of pelvic infl am-
matory 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 usu-
ally 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. Wil-
liams was hopeful that this would turn
out to be what she had, because it is
completely treatable.↓
The Secret Is Time
When Williams fi nally met the patient, he
was reassured by how well she looked.
She was still taking two antibiotics — Aug-
mentin 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 daugh-
ter, 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 pel-
vic wall into her thigh, she would need at
least six months of antibiotics.
The patient took Doxycycline for a year,
fi nally 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 stump-
ing 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 pret-
ty regularly,’’ he replied thoughtfully. ‘‘And
that makes all the diff erence.’’