September 2006

Doctors & Patients

The problem of Morgellons is primarily one of a stark divide between the perceptions of the doctor on one hand, and the patient on the other.

The doctor sees a varied set of physical and mental symptoms that could be caused by one or more conditions. They see lesions on the patient’s body that often look like the patient has scratched themselves. They also see the patient pointing out things on their body, like lint, hair and specks of dirt, and they hear the patient say these things emerged from their body. They hear the patient insist they have a disease called “Morgellons” that has only recently been discovered.

The patient sees the doctor trying to “explain away” what are, to them, obvious symptoms. The patient thinks they feel the the fibers move, and emerge from their body. The patient is frustrated by the doctor’s suggestion that there might be an emotional component to their symptoms. The patient rejects the doctor’s diagnoses and substitutes their own.

In this post, I’m going to focus on the doctor’s perception of these patients. I feel what these fifteen doctors and professors say here really encapsulates and explains many of the problems, and answers many of the arguments surrounding “Morgellons”.,,18393-2188371.html

“This is not a mysterious disease,” says Dr Norman Levine, a Professor of Dermatology at the University of Arizona. “If you polled 10,000 dermatologists, everyone would agree with me.” He says he has seen 100 patients suffering from such symptoms, and they responded well to treatment, including a drug called Pimozide, which is used for chronic schizophrenia. According to Dr Levine, they are suffering from a monosymptomatic disorder in which they are absolutely convinced something is in their skin, a delusional parasitosis. He says he has studied the fibres his patients bring in by the bag-load and they are textile in nature.

Michael Girardi, a dermatologist at the Yale School of Medicine, had never heard of Morgellons but when its symptoms were described to him, he was reminded of another disorder that is well known to doctors. “They just renamed it,” Girardi told LiveScience. “We just call it delusions of parasitosis.”

“It’s basically when a patient thinks that there’s something coming out of their skin, a material or bug of some sort, when truthfully there’s nothing there,” said Stacy Beaty, a dermatologist at the Saint Louis University School of Medicine.
In medical schools, physicians learn to watch out for the “matchbox sign” of delusional parasitosis, when patients bring in hair, skin or clothing lint, sometimes in matchboxes, that they claim contain the insects or parasites responsible for their torment. However, when examined, the samples reveal no such thing. The lesions and scratches sometimes seen on patients with delusional parasitosis are usually self-inflicted, Beaty said.
“To rule out any infectious causes and also to put the patient’s mind at ease, a lot of times we’ll do skin biopsies,” Beaty said in a telephone interview. “If we feel that it’ll be helpful, we might also start different anti-psychotic or anti-anxiety medicines.”

In response to rising media coverage about the condition, the Los Angeles Department of Health Services recently issued a statement that said bluntly: “No credible medical or public health association has verified the existence or diagnosis of ‘Morgellons Disease.’ The current description of the disease is vague and covers many conditions.”

“In many cases, (delusional parasitosis) is a mono-delusional problem,” Lynch [Dr. Peter Lynch, professor emeritus in dermatology at the University of California, Davis] said. “The patients are normal in every other way. It’s always hard to get such patients to believe it’s a psychological problem. Some patients are very convincing, and I’ve had psychiatrists call me about referrals I’ve made and ask if I’m absolutely sure there’s nothing organic going on here.”

He said in the 40 years he has been practicing medicine he hasn’t seen a delusional parasitosis patient with physical symptoms that can’t be explained. He said while it’s possible some cases may be wrongly diagnosed, it’s unlikely a large segment of patients is suffering from a physical illness.

“You can miss a case and of course that happens,” Lynch said. “But are many being missed? In a word, no.”

When told of Dr. Bill Harvey’s successful treatment with antibiotics of Morgellons’ patients in Houston, Dr. Peter Lynch of the University of California, Davis said the “cures” are easily explained by the placebo effect. Patients treated with sugar pills, for example, often get well because they believe they are receiving medicine

Lynch said 80 percent of patients with delusions of parasites respond to psychotropic medication, an indication their illness is mental.

“Anecdotal evidence doesn’t carry much weight,” Lynch said. “There are many anecdotes of alien abductions, but that doesn’t mean they are true. And as for the pictures, you can see pictures of the Loch Ness Monster on the Internet, too.”

“If there were a peer-reviewed study, with 15 or 20 patients who have the same exact thing in their skins, then maybe I’d believe it,” Lynch said. “When fiberglass curtains first came out, many people with skin conditions were diagnosed with delusions of parasitosis (DOP). But studies showed these patients had tiny (fiberglass particles) in their skin.”

“There are a huge number of people out there with (delusional parasitosis), and most of them are not getting adequate treatment because they have this fixed belief,” said Dr. Dan Eisen, a UC Davis dermatologist. “It’s probably just a group of patients who haven’t gotten the appropriate treatment, and they’re calling it Morgellons.”

“Dermatologists are afraid to see these patients,” says Dr. Peter Lynch, professor emeritus of dermatology at the University of California, Davis. He says he has examined about 75 people with Morgellons-like symptoms in the past 35 years and believes they suffer from delusional parasitosis–literally, delusions of parasites in the skin. It’s a diagnosis people don’t like. One patient, threatening malpractice, convinced the state medical board to investigate Lynch. Another warned he had a pistol in the glove compartment of his truck, Lynch says. “He told me, ‘I’m going to shoot the next doctor who tells me it’s in my head.'”

Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia–a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? “In every case I’ve seen it’s a textile fiber, and it’s on the surface of the skin,” he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. “Guess what?” he says. “The lesions are healed.”

Part of the problem with a disease like Morgellons, [Tim Jones, an epidemiologist from the Tennessee Department of Health] says, is that its symptoms are both vague and varied. Before public health officials can investigate, there must be a clear definition of the disease. The Morgellons Research Foundation says they have that definition, but there is no one symptom, or even group of symptoms, that defines Morgellons. […]
“Trying to do studies on a group like this becomes virtually impossible because you may have 10 percent of the people who meet a real strict definition and a whole bunch of other people who don’t,” Jones says. “If you go through 10 patients and one is having discolored sweat, another one’s having pieces of spaghetti stick out of his skin and another one’s having, I don’t know, heel pain, it’s really hard to think what would tie these things together”.

“They suffer terribly, but it’s psychiatric,” said Dr. Dirk Elston, a dermatologist in the Geisinger Medical System in Danville, Montour County. “The fact that there’s something online to cling to, it’s a difficult obstacle for us.”

“The moment you mention psychiatrists, these patients get extremely angry,” said psychiatrist Alistair Munro, author of “Delusional Disorder.” “They say there’s nothing wrong with their brain. They have all kinds of explanations.”

“I found no evidence of [anything suspicious] in Andrew,” Dr. Heldrich [Dr. Fred Heldrich, a Johns Hopkins pediatrician] wrote to Dr. Frac after the visit. Then he added: “Ms. Leitao would benefit from a psychiatric evaluation and support, whether Andrew has Morgellons disease or not. I hope she will cease to use her son in further exploring this problem.”

“People don’t need the Internet as long as they’ve got the media,” said Edward Shorter, a professor of psychiatry and the history of medicine at the University of Toronto. Once the media reports come out about a new possible disease, even if it’s not real, some people see it, “and they say, ‘That’s what I’ve got. That’s my disease,'”

“I always feel that people should keep an open mind and I think there are scientific experiments, what we call evidence-based medicine, that can prove or disprove that an organism is causing this,” University of Texas Health Science Center at Houston dermatologist Dr. Stephen Tucker said.

“In dermatology, we speak about something called an ‘outside job,’ which is a skin eruption made by the patient himself,” said Dr. Noah Scheinfeld, an assistant professor of dermatology at Columbia University in New York and an expert on the psychiatric origins of certain skin disorders. “When you look at the pictures of these Morgellons lesions, they are classic for that.”

Self-excoriation is a common feature of delusory parasitosis, despite the individuals’ protestations that they do not scratch. Scratching may produce papular eruptions. Any repeated skin irritation produces a friction blister. Repeated rubbing of an area often produces a bleb (small blister) which, when ruptured, yields an open sore that may become infected. Once the sore begins oozing plasma and a scab forms, hairs and cloth fibers become entrapped in the sticky fluid. These flecks are dislodged and called mites or insects because they look like they have “antennae” and “legs”. Hair follicles often are pulled out; the follicle accompanied by the associated sebaceous gland looks like a worm. – Nancy C.Hinkle, Professor of Entomology, University of Georgia.

Patients pick at areas until they can pull material from the skin. This may be referred to as “pulling a thread from the skin.” – Dr. Noah Scheinfeld,

Logically, any credible study of Morgellons should have tried to explain the connection between the fibers and the symptoms. It’s not a good sign that no one has bothered to offer a formal starting theory on Morgellons fibers and that the [Morgellons Research] Foundation criticizes physicians for not looking for signs of Morgellons when they don’t really know what to look for themselves. – Dr. Chris Rangel, MD.

Noah Scheinfeld, assistant clinical professor of dermatology at Columbia University, says patients sometimes come in with pieces of their skin mixed with other materials in a box or a piece of Saran Wrap. “Such patients are a challenge to help and to treat,” he says. “They want to be believed above all and tend to be socially isolated.” Scheinfeld says the Internet has helped those with parasitic delusions to band together and reinforce each others’ beliefs.

“There really is no scientific basis at this point to believe that [Morgellons] is real,” says Stephen Stone, president of the American Academy of Dermatology.

Hystorical Context

Those who cannot remember the past are condemned to repeat it
George Santayana, The Life of Reason

Have you seen it before? Or have you seen the same problem in a slightly different form?
G. Pólya, How to Solve It.


Is Morgellons a real disease? Are over 5000 people affected by a common causative agent that causes fibers to appear in the skin, along with itching, lesions and symptoms that match those of Chronic Fatigue Syndrome or Fibromyalgia?

That seems like a difficult problem to answer. If you can’t immediately answer it, then take the advice of Polya, and ask “have you seen the same problem in a slightly different form?”.

And yes, we have. Right in the question actually, we have Chronic Fatigue Syndrome, and Fibromyalgia. Two syndromes with a long list of symptoms, nothing detectably wrong with the patient, and contested causation. Is Morgellons simply CFS with itching and scratching?

But let’s take Polya’s advice and then add in some Santayana. Has the same problem arisen in the past? It sounds like we would need to look at the history of medicine. Have there been cases where thousands of people though they had a specific novel illness, but that illness turned out to be nothing new?

First let me pause for a second to say, again, that I think people are really sick. They have real symptoms, they may have a variety of problems, they need treatments. What is under debate here is if people all have the same illness, and if “Morgellons” is a new disease.

Back to the past. Morgellons is a complex subject, but the prevailing theory is that there is a degree of psychosomatic illnesses mixed in with real illnesses, and greatly compounded by mass hysteria, fed mostly by the media coverage during 2006.

To understand how this might be the case, we need to look at similar events in history. There are a lot of them, and I cannot do justice to them all, but others have done the work for me, so I shall give you pointers, if you are interested.

“People don’t need the Internet as long as they’ve got the media,” said Edward Shorter, a professor of psychiatry and the history of medicine at the University of Toronto. Once the media reports come out about a new possible disease, even if it’s not real, some people see it, “and they say, ‘That’s what I’ve got. That’s my disease,'” Shorter said.

According to Shorter, mass hysteria has taken many forms:

UTERUS AILMENT: The word hysteria is derived from Greek, meaning “wandering of the uterus.” In the 19th century, many people thought a malfunctioning uterus led to any number of symptoms, including pain, paralysis or amnesia. Sigmund Freud and other early psychologists considered these symptoms psychological.

TEETH: At the beginning of the 20th century, there was a vogue for pulling out all of one’s teeth, “on the grounds that you could be suffering from autointoxication, from infected root canals.”

COLON: Around the time of the first World War, there was a trend of removing much of the large colon “on the grounds that your feces were leaking out of your colon and poisoning the rest of your body.”

In the early 1800s, for example, doctors talked about “spinal irritation,” believing that when a certain point along the spine was pressed or hurt, it created peripheral pains and other motor (muscular) system problems. Consequently, doctors increasingly began seeing patients whose problems conveniently fitted the diagnosis. These patients–usually women–complained of temporary blindness, paralysis, and other ills. Some couldn’t walk, others couldn’t move their arms, many remained paralyzed for months in bed. Doctors would come across patients so catatonic that it was impossible to tell whether they were alive. Unable to detect pulses or respiration, doctors found that the only sure sign of death was when the body emitted a “cadaverous smell.”

Some of these patients no doubt had undiagnosed organic diseases. But Shorter convincingly argues that the majority of cases were psychosomatic.

It’s a funny thing: by the early 1900s, these symptoms had virtually disappeared. Medicine had started to shift away from the spine to the brain. Also, the social position of women improved. Whereas Victorian era mores had rendered women immobile–unable to have careers or lives of their own–psychogenic paralyses were, Shorter contends, “a metaphorical way for women to convey their dysphoria.” Once women won greater freedom, these kinds of symptoms became obsolete.

Psychosomatic symptoms didn’t disappear, however — they simply changed with the times. In case after case, from somnabulism to neurasthenia to “Yuppie flu,” we see how medical and cultural trends alternately reinforce and erode particular psychosomatic symptoms. Shorter argues that this is because patients don’t want to be seen as crazy and they therefore unconsciously or semiconsciously exhibit the “right” symptoms.

Hystories, by Elaine Showalter, Columbia University Press, is a good book on the subject:

Mass Hysteria has been around for centuries. In Extraordinary Popular delusions and the Madness of Crowds (1841), Charles Mackay, a London journalist, described what he called “moral epidemics,” including tulipomania and witchcraft. One hundred fifty years later, Mackay’s book still has relevance. As Simon Wessely, a senior lecturer in pyschological medicine at Kings College School of Medicine in London, explains, “All that has changed is the precise nature for false explanation. In previous times mass hysteria would be blamed on demons, spiritism and diabolic possessions. Nowadays we are oppressed by equally invisible gases, viruses and toxins

A quote within the above mentioned Extraordinary Popular delusions and the Madness of Crowds is of twisted relevance. Back in the late 1700s, the use of microscopes was causing problems:

Oh that I had remained in that happy state of ignorance wherein you first found me! Yet will I confess that, as my knowledge increased, so did my pleasure, until I beheld the last wonders of the microscope; from that moment I have been tormented by doubt and perplexed by mystery: my mind, overwhelmed by chaotic confusion, knows not where to rest, nor how to extricate itself from such a maze. I am miserable, and must continue to be so, until I enter on another stage of existence.

Does that remind you of anyone?

Morgellons is nothing new. Similar diseases, plagues and demonic possessions have sprung up and spread through the populace since the start of human history. If it follows the path of history, Morgellons will fade away (like Epstein-Barr flavored CFS), and be replaced by something new. You can’t stop it, but we can at least be aware that these things happen, and we can try to mitigate their ill effects by providing some perspective.

Controversial Diseases

Morgellons is sometimes described as a “Controversial Disease”. I was wondering what other controversial diseases there are, so I did a little Googling to find a few.a-cervical-collar-vc11.jpg

I was quite surprised when something that turned up was chronic Whiplash – yes, that bad neck you get when involved in a car accident, now an $18 billion industry. Surprisingly some studies show that demolition derby drivers do not ever suffer from chronic whiplash. In Lithuania (where car insurance is rare) chronic whiplash is unknown. Chiropractors dispute these findings.

Some symptoms of whiplash: headache, dizziness, abnormal sensations such as burning or prickling (paresthesias), or shoulder or back pain. In addition, some people experience cognitive, somatic, or psychological conditions such as memory loss, concentration impairment, nervousness/irritability, sleep disturbances, fatigue, or depression.

Also controversial: Multiple Chemical Sensitivities. Factors of compensation and legalities play a factor here too:april-carlisle-in-mask.jpg

“Whatever its physiologic, toxic or psychiatric origins are, MCS has become the focus for great efforts to support a particular set of beliefs about its mechanism and manifestations. MCS is discussed in an array of patient support groups and clinics, by clinicians, hotlines and lawyers, in journals and other media, and on World Wide Web sites. It has become the subject of disability laws and settlements”

Some Symptoms of MCS: Headache, Fatigue, Dizziness, Nausea, Irritability, Confusion, Difficulty concentrating, Memory problems, Muscle pain and/or stiffness, Skin rash or hives, Mood changes.

a-mad-woman-soutine34a.jpgHere’s another: premenstrual dysphoric disorder, (PMMD), which was listed as treatable by Prozac, but later, in Europe, described as “an invented illness and a strong example of the medicalisation of ordinary life.”. There is some suggestion that PMDD has been “marketed” by drug companies. Again, money plays a strong role in defining the disease.

Some PMMD Symtoms: irritability, nervousness, difficulty in concentrating, lethargy, depression, severe fatigue, confusion, paranoia, emotional hypersensitivity, crying spells, moodiness, sleep disturbances, acne, neurodermatitis (skin inflammation with itching), other skin disorders, including cold sores, numbness, prickling, tingling, or heightened sensitivity of arms and/or legs, and a whole load more.

I think the situation is too complex to draw any simple parallels between these kinds of conditions and “Morgellons”, but there are obvious aspects here and there – notably the smorgasboard of symptoms. Read the articles above. It’s fascinating stuff.