The Medical Cathedral by the Sea
This is a true story of a medical case.
“I have worms crawling out of my skin,” she said to the front desk of the major medical center on the coast. This front desk receptionist had heard it all, and without blinking an eye booked this new patient into the General Medicine Clinic.
The Lady from Nevada
She was a blond from Las Vegas, a lady you could easily picture walking down the Strip on a warm desert night, dressed to the nines, living the good life. She was not a fan of big cities or formal occasions.
She had run a medical gauntlet through Las Vegas, then Reno, then finally screwed up her courage, and on to the big medical center on the coast. After Las Vegas and Reno she knew that she’d been written off as a nut, and she was not having it. She had to have answers.
The Sea of White Coats
The General Medicine triage desk, with barely a glance at the chief complaint, told the nurses to put her in the next exam room and tell the doctors. And there she sat, in a typical small, sparse, chilly room.
In a bit an internist and three white coat shadows came in, a resident, an intern, and a medical student. The chief complaint had attracted them like moths to a flame. “A good teaching case”, the internist had said. And thus she sat before the assembled experts with nothing to show them but her own conviction.
The Medical History Mystery
She told her story to yet another assembly of disbelieving faces. Every week or two, she said, a worm would crawl out through her skin. No, she couldn’t show them where because the little holes would close up after a day or two, disappearing like they had never been there. No, she hadn’t brought any with her. She explained that when one wiggled out it upset her. She hates bugs. Instinctively she’d slap it away, to get it off her. Later she’d try to find the worm but, so far, hadn’t been able to find one.
Mysterious But Vanilla
She was so normal it as boring. Rural Nevada childhood, moved to Las Vegas after high school to find work. Average height, weight, and BMI, normal vision. Did safe sex and no history of infections. She admitted that she smoked more than she should but drank very little. She ate a fairly healthy diet. No psychiatric history.
Heart sounds normal, lungs clear, abdomen soft, neurological and mental status exams normal. Lab orders went in for lipids, glucose, basic chemistries, urinalysis, more out of professional habit than a hope that the levels would explain worms crawling through one’s skin. After two hours of careful history and thorough examination, Internal Medicine had exactly what they started with: a lady with a story. Nothing else.
A Really Healthy Woman, Except That…
When a patient is not well but everything’s “within normal limits”, it’s awful. The team of four in white coats huddled. Dermatology? Maybe, well, no. There’s nothing on her skin. Infectious Disease? More tempting. Hey, there is that guy in Infectious Diseases who knows everything about parasites. And so it was that she was booked to see the Parasitology guy in Infectious Disease.
Chasing Doctors Chasing Parasites
As luck would have it, their “main guy” parasitologist was on vacation. Our lady had to return to Las Vegas and come back the next week. She was grumpy about it but she now had hope that someone would look at her and say, “I know exactly what this is.”
She comes back the next week still empty-handed. No new worm had wriggled out, so no specimen in a bottle. She had to admit this new specialist was impressive, and a nice guy to boot. He listened and probed for details. She said the worms always wiggled out from her forearms, or rarely, from her hands. He carefully examined her arms with his magnifying headlamp. Rough skin, too weathered for her age, the forearms but not the upper arms. But, no tracks, no scars, no visible tunnels. No rash, no nodules, no signs of anything clawing its way from the inside out.
When Even The Brilliant Guy Is Puzzled
Her story felt solid, sincere, convincing. And there really are worms that crawl out of one’s skin. The Guinea worm, for instance, is a cruel little thread that comes in from contaminated water, travels around inside the body for a year, then surfaces by burrowing through the skin. Chigoe fleas invade feet. Then there’s filarial worms, screwworm infestations, creepy moving lice. He thought through his long list of crawling, burrowing, biting creatures.
The problem was, none of them fit. Not in the Nevada desert. Her geography was wrong. Her exposures were wrong. The timing and patterns were wrong. Her skin, examined up close, told a story but not the right story. Nothing added up.
And when nothing adds up in biology, medicine starts whispering a different word: psychiatry.
There Are Things That Are Real That You Can’t See
(See “Your Mind & Your Brain“)
When everything seeable is normal and the medical chart is fat, where is the illness hiding? The internist and the parasitologist started chatting in the hallway as they walked toward the doctors’ lunchroom. Her story was like a 3-D puzzle that they turned one way then another while they ate. A surgeon joined the lunch group, then a radiologist. One of them snagged a passing pathologist for a curbside consult. It had become a multidisciplinary case conference over cafeteria food, five specialties and zero answers.
The surgeon finally said out loud what they were all thinking: “delusional parasitosis.”
Yes, of course, there it is. Delusional parasitosis. When a person is utterly convinced that they’re infested with parasites when every test, every exam, and every bit of logic suggests otherwise.
The Great Worm Delusion
It’s not common, but is more frequently in women. When there’s no discoverable cause it goes into this box. So the big doc posse around the lunch table referred our lady to the Division of Psychiatry where they can diagnose “crazy”.
It’s usually true that by the time someone gets to a psychiatrist in a the general medical/surgical hospital world, they’ve already been labeled in half a dozen unspoken ways.
The View From The “Looney Bin”
It happens in consultation psychiatry that the psychiatrist needs to push back when a surgeon or internist wants to stamp “psychiatric” on someone’s forehead just because the lab work came back boring. It helps to be prepared.
Her thick paper chart appeared in my inbox the afternoon before our lady from Las Vegas was to appear in my office. Yes, this was back in the days of paper medical records with notes written in cursive. There were records sent from Las Vegas, from Reno, from our own clinics. I stayed late.
The Cautious Return and Revisiting the Story
The next day she was pleasant but ill at ease. Why see a psychiatrist? She had worms coming out of her skin, and now she’s been sent to see a shrink.
We started over. History again, same life story, same symptom description, same frustration. More discussion of the weatherbeaten skin on her forearms. How does an attractive, healthy young woman end up with arms that look older than the rest of her. She had never done hard physical labor.
We ran out of time before either of us felt it was a finished conversation. To my surprise, she seemed oddly unbothered by the need to return yet again. For someone who resented psychiatry, she didn’t seem mind the follow-up.
The Sandboxes of Las Vegas
She sat down with a different energy at her second visit to psychiatry. All the docs focused on her arms. The previous discussions had been spinning in her head like slot machine reels, and she felt she had hit a jackpot.
There had been this job at an antique auto restoration shop as a parts cleaner. There were big clear plastic boxes. You opened the box, put in the rusty car part, and closed it. The front panel had two thick rubber gloves built in, attached to holes so the operator could slide their arms into the gloves and work on the dirty part inside without getting hit by the cleaning “sand”. You step on a pedal and the “sand” shoots out from the side at the rusty part. As you hold the part in the sand blast with your gloved hand, the sand blasts away the rust.
A Small, Old, Poorly Run Las Vegas Business
It was an old shop with old equipment. The oldest cabinets for cleaning parts had gloves with tiny cracks and holes. Sand could get in. When she drew the short straw and ended up having to use one of the older boxes, her forearms and hands were red and felt sore in the evening. The “sand” found its way into everything.
The job paid really well so she stayed working there as long as she needed. Eventually she found an even better paying job in a Las Vegas resort as a spa attendant. She’d forgotten about the auto parts cleaning job until all the questions about her arms and hands.
The Parts Cleaning Shop Was Not a Day at the Beach
She had poked around the old shop in Las Vegas she found out that the blasting “sand” wasn’t sand like beach sand. Everyone called it sand so she thought it was sand. She tried to learn more. Someone vaguely told her that they couldn’t use real sand because that would be dangerous.
She and I needed more information. I asked her to go back and find out more.
Invisible Injuries and Glass Clear “Sand”
Back home, she tried seriously snooping around the shop. Everyone clammed up. They remembered her. They had other ex-employees give them grief about the old blasting boxes, and one of those others came with a lawyer attached.
Using her sneaky and sociable skills, she spotted a new, young guy working there. She was really friendly with him, then offered to buy him a drink. At the corner bar he answered her question over a couple beers. The “sand’ was a cleaning media made of glass beads of varying sizes. An OSHA inspector made the shop get rid of the old boxes because some operators complained of getting hurt. The owners had to replace them with new ones. So, they didn’t want old ex-employees walking back in the door.
The Fly in the Ointment was a Worm in the Skin
And so it was that, before she came back for a next appointment, the light had turned on for her. Glass beads, huh. Glass beads. Other employees injured. Doctors and attorneys. Worms coming out of my skin. It was starting to maybe add up.
And then, as if on cue, another “worm” appeared. Same as always: wiggling out from the skin of her forearm. But this time, instead of panicking and brushing it away as fast as she could, she froze. She leaned in. She examined the twisting little devil.
She picked it up.
One Hellofa Parasite If You Ask Me
It was not soft. Not living. It was a tiny, clear, irregular splinter, a twisted little piece of glass. It was not perfectly round like a marble, but bent and kinked, exactly the kind of shape that could feel like a worm under the fingertip.
She put that glass splinter in a bottle and brought it with her. That’s what all the doctors kept asking her to do, collect a worm and bring it in. And, there it was, the physical evidence in this entire story. Not a parasite. A piece of a past job, literally working its way back out of her body a long time later.
So, the “worms” were not hallucinations. They were not delusions. They were real glass bead “worms”.
The Joy of a Quiet Absolution of Being Believed
This is the best part of this story, how absolutely great it feels for a person to walk out of a major medical clinic having finally been told, “You’re not crazy. You were right all along.”
She had been bounced from city to city, clinic to clinic, edging closer to being written off as delusional. People had discussed her over lunch and assigned her a psychiatric label in absentia. But in her case, her body simply had a long-kept secret.
Finally Our Lady from Las Vegas Understood
Glass beads had been driven under the skin of her forearms and hands through tiny cracks in old blasting gloves, and over time, the body had done what it often does with foreign intruders: walled them off, worked around them, pushed them gradually outward. Every so often, one would finally make it to the surface and escape, a silent confession of an injury long forgotten, reemerging in a form that looked, to the brief glance infused with fear, exactly like a little, wiggly worm.
She was relieved. And embarrassed. Embarrassed that she had to see a psychiatrist. And angry that she was made to feel that she was mentally ill.
The Uneasy Truce with Psychiatry
She even said that it bothered her that she actually looked forward to coming back to see me. She had thought to herself, “Best not make a habit of that.” Because she knew, and all of her friends knew, that no one wants to be the kind of person who’s comfortable seeing a psychiatrist.
That visit was the last time I saw her. There were no subpoenas, no phone calls from attorneys, no requests for expert testimony about occupational hazards in auto restoration shops. Knowing her personality as I’d come to, my guess is that she chose not to sue. She seemed, in the end, more interested in reclaiming her life than in reliving the chapter where she thought she had worms crawling out of her skin and doctors thought she was crazy.
Helpful links:
National Institutes of Health on Parasitic worms and inflammatory diseases
Center for Disease Control and Prevention on Parasites
National Library of Medicine on Delusional Parasitosis: Diagnosis and Treatment
This is a true story of an actual medical case. Some details have been changed to protect medical confidentiality and the identity of some of the individuals involved.