"Doctor, bugs are crawling in my skin, sending out fibers, releasing secretions! Look at these awful sores—something's alive in them."
The plea may sound straight out of a sci-fi movie, but for some people, it's a sensation they face every day. And it's an experience they share with me.
As a tropical medicine specialist, my toughest challenge is not what you might imagine—a returning traveler afflicted with malaria, amebiasis, or dengue fever. Those are serious illnesses, but I know how to diagnose and treat them.
Instead, the patients who haunt me are the ones who believe they are infested with parasites, and—according to everything I know—are not. For decades, dermatologists, psychiatrists, and other specialists have called their condition delusional parasitosis. Today some sufferers are pursuing a new label: Morgellons disease. Not long ago, I saw my first case.
It began with an urgent request from a colleague of mine that I see his friend from church. From what he told me, Margo Riley was truly one of God's saints. For some time, she had been going to Mexico every few months to volunteer at rural clinics and orphanages.
Over the past year, however, Margo had taken no overseas trips and rarely even left her house. Like a modern-day Job, she suffered recurring nodules, pustules, and weeping sores on her skin. The affliction had turned her into a virtual recluse.
When she walked into my exam room, her misery was obvious. Her skin was blotched and marred. Her sagging posture and dull gaze echoed her despair. Then, as if fed by some new wellspring of energy, Margo's body cues changed.
"I don't know if Joe told you, but I have Morgellons disease," she said as she seated herself next to my desk. "I've read all about it on the Internet, and I'm sure I'm right."
By coincidence, I had also recently read about Morgellons, a syndrome whose victims suffer rashes, itching, burning skin, and recurrent skin ulcers studded with filaments and granules. In 2002 a former electron microscopist, searching for the cause of her son's rash, christened the blight after finding the name in a historical reference online. At the same time she started the Morgellons Research Foundation, which, according to its Web site, "is dedicated to finding the cause of an emerging infectious disease which mimics scabies and lice."
When Margo first announced she had Morgellons disease, her defiant tone was unmistakable. I let the challenge pass, however. Nothing would be gained if we started wrangling over her diagnosis before I had even reviewed the facts of her case.
"Please, just tell me what happened to you," I urged. "How did this start?"
"OK," she agreed, relaxing a little. "Last year our church group went to the Yucatán Peninsula. The place was loaded with bugs, so we all got bites. At first, mine just itched. Then they oozed, crusted, and spread."
So far, her problem sounded like a nasty but familiar tropical woe—bacterial impetigo. There's something about heat and humidity that fuels superficial skin infections.
"Did you take an antibiotic?"
"Yes, of course," she replied with a little more brio. "When I got back from Mexico, my doctor put me on Keflex and prednisone for the itching. After they didn't work, I tried so many other things I lost count. One specialist even treated me for fungus. Through it all, I still had scabs and sores—plus weird things coming out of me."
I needed to look more closely at Margo's skin. Although I couldn't place it, there was something unnatural about the scars on her face and arms. Then she hiked up the legs of her loose cotton pants. What I saw straightaway was the rough, angry scatter of infected hair follicles. Then I noticed some larger nodules on her thighs that looked chronically inflamed, as if they had been repeatedly unroofed while healing.
"Can I ask you something?" I ventured, slowly moving my gloved hand over the scabbed purple bumps. "It looks like you've been picking at your skin. Am I right?"
"Darned right!" Margo sputtered. "Because I have Morgellons! I told you before. There are things in my skin—spines, fibers, moving grains. I even have pictures to prove it!" she said, reaching into her purse for a homemade compact disc.
At that point, as Yogi Berra once said, it was déjà vu all over again. Margo's rising pitch and sudden brandishing of "evidence" now reminded me of many other patients I had met over the years. They, too, were convinced that they had biting, burrowing creatures in their (partly) self-inflicted skin wounds. And, like Margo, they also brought photos and specimens, even microscopes and handmade slides for me to scan. I understood their desperation, but the problem was that we saw things so differently. To their eyes, tiny spicules of coagulated serum and tissue, fragments of irritated flesh, and other bodily flotsam and jetsam were unfamiliar and terrifying. I, on the other hand, was unalarmed by the detritus—the result, no doubt, of years spent examining patients and looking down microscopes. After hearing my views, however, the patients are rarely appeased.
I had the sinking feeling this visit was headed in the same direction, but I wasn't ready to give up yet. After exiting the room so that Margo could undress, I came back and surveyed her entire skin surface. I noticed a paucity of lesions in places that weren't easily reached by her fingernails. I also swabbed inside her nose. The nose is a sanctuary for Staphylococcus aureus, the usual cause of garden-variety boils and impetigo. Forty-eight hours later, the culture I sent to our hospital lab grew an antibiotic-resistant strain of the organism. I was elated.
"Guess what?" I said on the phone to her referring doctor. "I have good news! It's the same thing I told Margo in the office, but now I'm sure. She just needs to stop picking and reseeding the infection and start on a new antibiotic that will cover her drug-resistant infection. Comparing the sensitivity panel of her staph and the list of medications she's already taken, she's never really had effective treatment. It's a terrible shame, but at least we know what we're up against now."
There was a long pause and then an oddly glum voice on the other end of the line. "I wish it were that easy," my colleague replied. "Margo was pretty discouraged after she saw you the other day. I'm afraid she's looking for another expert who will do more skin biopsies and really invest time in her case. She's convinced she has a new species of parasite. She's willing to go to any length, she says, to find out what it is."
Later that day, a thought gnawed at me, as it had many times before. Was it simply a personal distrust of doctors that drove Margo and other patients like her from the help they needed and sought? Or an impassable gulf between science and belief?
Claire Panosian Dunavan is a professor of medicine and infectious diseases at the David Geffen School of Medicine at UCLA. The cases described in Vital Signs are real, but the authors have changed patients' names and other details to protect their privacy.
