It’s bad enough to have a mysterious and frightening illness. What’s worse is when everyone thinks you’re crazy.
A Gainesville physician and his wife are among thousands of Americans who believe they have a bizarre condition known as Morgellons. It’s characterized by skin lesions, crawling sensations and strange, multicolored fibers that allegedly emerge from the skin.
But most doctors believe these cases are really a psychiatric condition called delusional parasitosis, in which patients are convinced they are infected with bugs.
“I think there’s a feeling in the dermatology community that if you actually take time to examine these patients’ skin, you’re only reinforcing their delusions,” said Greg Smith, 58, who practiced pediatrics in Gainesville until illness forced him to retire last year.
Smith’s problems began in May 2004, when he developed “a really peculiar rash.” An avid collector of cacti, he thought he had gotten cactus spines embedded in his arms and hands.
“I tried to pull the ‘spines’ out of my skin, but they didn’t look typical at all,” he said.
About two weeks later, his wife Judy, a former nurse, also developed symptoms. They noticed odd dust in their Riverside Drive house that Smith described as resembling “the hulls of sesame seeds.”
“We took samples to the county (agricultural) agent, but they just found human and cat hair,” he said. “My wife talked to an entomologist at the University of Georgia, and he seemed to imply that she was delusional.”
Doctors doubt patients’ stories
The wake-up call for Smith came on the day he felt “a stinging sensation” in his cheek.
“A little piece of what looked like lint moved from there to my eyeball,” he said. “It was freaky and bizarre, but also incredibly painful. I couldn’t get it out of my eye with tweezers, so I went to the ER.
“They didn’t find anything in my eye, but they tested me for (abuse of) drugs and referred me to a psychiatrist.”
Smith said the psychiatrist discharged him after a few visits, finding no evidence of delusions.
Desperately researching this phenomenon on the Internet, Smith began hearing of similar stories all over the country.
“Many people reported being treated in a condescending or embarrassing manner by doctors, the very people they had tried to get help from,” he said. “That’s when I became very passionate about this.”
Smith decided to become a board member of the Morgellons Research Foundation, which was started by Mary Leitao, the South Carolina woman who named the illness in 2002.
He recently resigned from the board after Leitao was accused of mishandling the research money. But he continues to be an outspoken advocate for the condition.
In February, the Smiths went to Tulsa, Okla., where a researcher removed skin fibers from some Morgellons patients and sent samples to the Tulsa police department’s forensics lab. Scientists were unable to identify the samples, saying they did not match carpet or clothing fibers or other known materials.
At the same time, ABC News’ “Primetime” show was in Tulsa preparing a segment on Morgellons.
“They first interviewed us in Tulsa, and then they spent a full day taping in Gainesville,” said Smith. “We were getting frustrated because they were originally going to air it in the spring and they kept putting it off.”
The report, which finally aired Aug. 9, featured a number of interview segments with Greg Smith. None of the footage of Judy was used.
Smith said it felt unreal to see himself on national television. “All the publicity in the past couple weeks has just blown me away,” he said.
CDC to investigate
The media have suddenly begun covering Morgellons because the topic now has a hint of legitimacy. In June, after many inquiries from the public and even from members of Congress, the Centers for Disease Control and Prevention agreed to form a multidisciplinary task force to study whether Morgellons is an actual disease.
“The CDC was starting to get some political pressure,” said Smith. “I think this is a significant public health issue and the government needs to fund research on it. I hope it doesn’t end up like the (AIDS) scenario, where the government knew there was something going on but didn’t do anything about it.”
The CDC’s apparent reluctance to get involved may have been related to concerns that, if Morgellons is a mental rather than physical illness, greater publicity could actually lead more people to conclude that they have it.
There’s historical precedent for such a situation. During the Cold War era, when radio, TV, and movies were filled with stories about flying saucers, many people swore that they, too, had had a UFO encounter.
Smith rejects that argument. “I don’t think (Morgellons) is a form of mass hysteria spread by the Internet,” he said. “I don’t think thousands of people can have the same delusion.”
Bernard Frankel, a professor of psychiatry at Emory University, disagrees.
“A delusion is, by definition, a fixed, unshakable belief that has no basis in reality,” he said. “It doesn’t matter how many people have it. What matters is what they have in common.”
Lyme disease link?
Could Greg and Judy Smith, two well-educated professionals who happen to live in same household, have developed identical delusions almost simultaneously?
It could happen, Frankel said. “We have seen delusions of parasitosis among couples. It has nothing to do with your level of intelligence or accomplishment.”
Smith believes he and his wife probably got Morgellons through some sort of insect bite. But Frankel has doubts about that hypothesis.
“If (Morgellons) is from a particular insect or organism, that population would tend to be localized,” he said. “It doesn’t seem like you would have cases spread randomly all over the country.”
However, there is one clue that could hold the key to understanding the condition. Greg and Judy Smith, like many Morgellons patients, both have tested positive for Lyme disease.
Generally transmitted by a tick bite, Lyme causes a rash and flu-like symptoms, but is easily curable with antibiotics.
If untreated, Lyme can progress to a second stage, characterized by arthritis and joint problems, and even to a third stage in which the nervous system is affected.
That’s what happened to Smith. He developed serious neurological symptoms, including numbness in his extremities, a dragging foot, a drooping eyelid and involuntary limb movements resembling Parkinson’s.
His wife also had neurological problems, including “brain fog” and severe fatigue. Both of the Smiths have been taking high-dose intravenous antibiotics to treat the Lyme disease, and their symptoms are improving.
Frankel is intrigued by the possible connection between Lyme and Morgellons.
“The fact that (the Smiths) have tertiary (advanced) Lyme disease is very interesting,” he said. “Could it be that the changes in the brain caused by Lyme could trigger the crawling sensations in the skin?”
In other words, if Morgellons is in fact delusional, could complications from Lyme disease be the common factor that ties all these patients together?
But how would that explain the weird skin fibers?
‘Something so odd’
Smith points out that delusional parasitosis is a diagnosis of exclusion, so you can’t definitively say that a person has it until you’ve exhausted all other possibilities. And most doctors don’t bother to look for alternative explanations when a patient comes to them complaining of Morgellons symptoms.
Frankel said he can understand the dilemma that physicians face.
“Dermatologists probably don’t want to do tests because this doesn’t fall into any routine category,” he said. “You don’t even know what to look for, so the testing would be complex and expensive. And insurance is not going to cover tests for a disease that isn’t proven to exist.”
Frankel said he’s glad the CDC is trying to settle the Morgellons question.
“It’s certainly worth investigating,” he said. “I think more than likely it will turn out to be delusional in origin, but there may be something (physical) to it. And regardless of what causes it, these patients deserve compassionate care.”
On that point, Smith and Frankel can agree.
“I’ve always been pretty much a traditional practicing physician,” said Smith. “I’m not a conspiracy theorist. There’s so much speculation (about Morgellons), and I don’t have the answers. All I know is that something so odd needs to be investigated.”
And he realizes how preposterous it all sounds.
“Unless it’s happening to you, it’s hard to believe,” he said. “It’s hard even for me to believe, sometimes.”
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