Morgellons: Mystery Illness or Delusional Parasitosis?

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Delusional Parasitosis

A Medical Mystery: Delusional parasitosis
Patients claim fibers sprout from lesions and parasites crawl under their skin. Most doctors tell them it's all in their heads
RENO GAZETTE-JOURNAL
5/8/2004

For more than three years Reno resident Theresa Blodgett, 37, has had a mystery disease that seems like a plot device from the television show “The X-Files.”

Blodgett’s symptoms include feeling invisible “parasites” biting her skin. She complains of overwhelming fatigue and body aches. She suffers from hair loss, skin lesions, rashes, and blue or red “fibers” that sprout from her lesions. She sees tiny black specks — like coffee grounds — on her arms.

More than a dozen doctors have told her the cause of her strange ailment is in her mind.

But a controversial new theory says many people who are branded with delusions of parasitosis are suffering from a physical illness, not a mental disease. Enlarged images of the “parasites” are posted on several Web sites and a Texas doctor said he has found biological causes and physical evidence for many of the symptoms described by Blodgett and others.

Dr. William Harvey of Houston said many of his chronic fatigue patients, including 17 with “mystery disease” symptoms, have tested positive for borrelia burgdorferi, the bacteria that also causes Lyme disease. He suspects the weird symptoms and parasites are not the cause of the illness, but are opportunistic infections and organisms taking advantage of the lowered skin immunity of people whose systems are weakened by the microbe.

Harvey said delusional parasitosis is a real disease, but some of the patients he’s seen aren’t hallucinating. Because the symptoms of the real disease match the description of the psychosomatic ailment, doctors often misdiagnose the cases, he said.

“This disease isn’t alien or magical; it’s real and the symptoms are real,” said Harvey, who is board-certified in aerospace medicine and has worked both as a space-medicine researcher and in hospital emergency rooms. “After three-and-a-half years, I’m still trying to understand this as objectively as I can…

“Without understanding the skin lesions fully, I’m treating patients with antibiotics and having clinical success. Something appears to have happened to their skin immunity.”

But most dermatologists and other doctors interviewed said they aren’t buying the theory, even though they haven’t seen Harvey’s research or the microscope photos of the strange fibers. They dismiss the mystery disease as a mental condition.

Dr. Peter Lynch, professor emeritus in dermatology at the University of California, Davis, said the attempt to identify a physiological reason for delusional parasitosis symptoms is “a convenient way not to have to deal with a psychological problem.”

“In many cases, (delusional parasitosis) is a mono-delusional problem,” Lynch 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.”

Same symptoms seen

This is the story of a disease allegedly misdiagnosed for generations. This is a story about doctors who know their patients’ suffering is real, but insist in the majority of cases that the problem is in their minds. This is the story of some “hallucinations” that can be seen under a microscope, and of a fear that keeps patients miserable, isolated and on the brink of despair.

Whether myth or fact, no one denies patients are in great pain.

Blodgett said it’s as though her body has turned against her.

She gathers up the black specks, the mysterious fibers and the small, fuzzy “cocoons” she finds on her skin and around her home. She tapes the macabre samples to typing paper, but she said no doctor will analyze the collection. Physicians who glance at the specimens dismiss the lot as stray hairs, clothing fibers, scabs and other common household debris, she said.

“It’s a nightmare,” Blodgett said. “Every day I awaken to a nightmare and no one will believe me.”

Doctors have diagnosed her with delusions of parasitosis. Medical journals define DOP as a patient’s unshakeable and mistaken belief that he or she is infected with parasites. Some physicians have prescribed anti-depression medication for Blodgett that she said makes her sicker and causes muscle spasms.

“I need help,” she said. “I’m not crazy. This is happening to me. I know it’s unbelievable but it’s happening. It’s not in my mind; it’s in my body.”

She is not alone.

Thousands of people from Canada to Miami, and from Seattle to Houston report the same symptoms, according to a national group formed to help such patients. Scientists have used state-of-the-art microscopes to take photos the fibers and “parasites,” but they remain unidentified. The Reno Gazette-Journal talked to other patients in Reno, Fallon, Fernley, Las Vegas, Boulder City and the Bay Area who report similar symptoms and have received similar diagnoses: their disease is psychological, not physical.

But if Blodgett and other patients are delusional, the activists said, thousands of people have been having the same hallucinations in exactly the same way, thousands of miles apart. And the delusions can be photographed and — if anyone will take the time — studied.

“I was feeling things moving under my skin,” said Margaret Moore, a San Francisco interior designer who has had symptoms for five years. “Something was coming out of the lesions on my skin, something that looked like tiny worms or filaments. I brought the samples to my doctor, but he didn’t want to look at anything. He threw out my samples and asked if I had a history of psychosis.”

Moore said when she insisted the symptoms were real, the doctor “got mad” at her and prescribed a muscle relaxant. She went to other doctors who gave her the same diagnosis “from across the room,” without seriously considering her complaints.

During the last year, thanks to the Internet, she has corresponded with dozens of other people with the same symptoms who were also told by doctors their illnesses were in their minds.

“I don’t think we’re all having this mass delusion,” Moore said. “But when your family hears that five or six doctors all agree, they say, ‘come on, admit you’re nuts.’

“Then you are really alone.”

The Morgellon’s Foundation — named for an early description of a similar-sounding illness — was formed in 2002 to help the people most doctors won’t believe. Some doctors interviewed said the foundation is dangerously reinforcing peoples’ mental illnesses.

But the foundation’s spokespeople said the knee-jerk diagnosis of delusions is the problem, not their questions or the evidence they offer. Morgellons’ members encourage further investigation into what they consider a health mystery. But they said researchers don’t seem interested in new data and dismiss their information as quackery.

Mary Leitao of McMurray, Pa., is the executive director of the Morgellon’s Foundation, a group she said she began out of desperation. Her son, Andrew, now 5, began complaining of things crawling on his skin and was breaking out in lesions when he was 2.

Leitao, who has a degree in biology and who has worked as an electron microscope operator and a chemist, saw the fibers and the “fuzzballs” in Andrew’s skin lesions. She took him to an infectious disease specialist at Children’s Hospital of Pittsburgh.

At first, she said, the specialist thought the skin condition was an unusual case of scabies and prescribed a cream-based medicine. When that didn’t work, the doctor assured her the lesions weren’t caused by anything infectious and Andrew was referred to a dermatologist.

Leitao said the dermatologist was initially fascinated by the blue fibers sprouting from her son’s skin lesions.

“The doctor looked at everything I showed him,” she said. “He examined Drew’s skin lesions using the handheld microscope I brought. He was so amazed at the blue fibers coming straight out of a skin lesions that he called his physician’s assistant over to look at them.”

She showed the doctor how the fibers glowed under an ultraviolet light.

“(The dermatologist) admitted he did not know what made the fibers, but was not willing to help me find out,” Leitao said. “His final diagnosis was eczema. He gave my son topical eczema medication, which did not help.”

As she left his office, she saw the doctor going out to lunch with his wife and 4-year-old son.

“Not a care in the world,” she said. “What is wrong with these guys? No innate scientific curiosity or human empathy?

“I realized I was on my own.”

Other parents of Morgellons’ patients said their children also have been diagnosed with common skin conditions, but if the parents also report symptoms they get the DOP label.

The textbook diagnosis

Medical textbooks and journals warn that when a patient visits a doctor with samples of “parasites” removed from their skin, it’s usually an ominous sign of mental illness.

“But the first obligation is to make sure they don’t have an infestation,” said Dr. Jay Adams, a Carson City dermatologist who is president of the Northern Nevada Dermatological Association.

“Take the time to look at it under a microscope.”

He said doctors usually get a sense of the patient during the visit and may suspect they’re dealing with a delusional person.

“Everybody has fibers and foreign objects on their skin, even things that live on them although we don’t usually like to think about it,” Adams said. “For the most part people don’t obsess about that. There definitely are a group of patients who have focused on the idea that things are crawling under their skins and will take extreme measures to prove that to you. It can take over their lives.”

Adams said it’s possible some patients may be misdiagnosed with delusions when they actually may have a physical cause for their symptoms. But he said that’s rare.

“I think that patients with (delusions) are a far more common answer than any of the patients who may really have parasites. Delusions of parasitosis is real. Most of the patients are delusional.”

He said that under magnification, the samples usually turn out to be lint. As for the black specks and other things the patients get off their skins, he said it’s possible to scratch, and poke and peel away parts of the skin tissue or just collect the lint that can be found anywhere.

“You don’t want to encourage people to further resist the idea that they are not infested with parasites,” Adams said. “It’s dangerous to reinforce their delusion.”

The medical books also have an explanation for family members or friends of patients who witness the strange fibers or parasites. It’s called “folie a deux” — a French term meaning “the madness of two.” If more than one person testifies to seeing the symptoms, then it’s called “the madness of three,” and so on.

Thus, witnesses don’t count because being a witness is considered evidence of sharing the patient’s delusions.

Adams said he is not familiar with the Morgellon’s Research Foundation, but said it sounds like a “cult” in which the members reinforce each other’s psychosomatic symptoms.

Patients band together

Yet patients a continent apart have reported the same symptoms and strange parasites long before seeing the Morgellon’s Web site or talking to other patients with similar symptoms. All said their doctors made a snap diagnosis of delusions.

Lobelia Sharp, a plant pathologist at the University of California San Francisco, said she’s had the lesions, fibers and other symptoms for about six months. She was diagnosed with delusional parasitosis, she said.

“I kept insisting that the doctors look at the fibers coming out of my skin,” she said. “They said the answer was anti-depressants, chemical restraints. I was taken to the hospital by ambulance and held in the mental ward.”

She said she and a friend who is a mold scientist recently spent an evening using tweezers to snag “filaments” out of her skin welts and examine them under a microscope. The material — which she said was cellulose plant fibers — were similar to each other but unlike anything either of them had ever seen.

“These were highly ordered cellulose fibers, not lint,” she said.

Some research done

William Harvey, the Houston physician who believes the disease is real, said he saw his first Morgellon’s patient in November 2001. She was the daughter of a surgeon who suffered from unexplainable skin lesions.

“The patient told me some strange stories about things that were living on her skin so I, too, wondered if her illness was psychologically based,” he said.

He looked at the lesions and saw “tiny colored threads” in the wounds. He sent several specimens to a mold expert for analysis. The fibers were put in culture dishes to grow, but only a fungus called candida tropicalis was found.

Harvey also found tiny worms on a patient’s scalp that later proved to be the nymph form of a feline parasite — a tapeworm that preys on cats and shouldn’t be found on humans. Other patients were infested with forms of algae, other plant pathogens, or candida tropicalis, the fungus found in the laboratory culture of the “fibers.”

“Once I started taking these patients seriously, I saw the variety and number of unusual and unexpected skin occupants was real, they were unequivocally there,” Harvey said. “I still don’t know what some of these things are, but my theory is that the symptoms are a phenomenon of a much larger process that has rendered their skin immunity ineffective.”

The process could allow plant and animal organisms that couldn’t survive on uninfected people to thrive on Morgellon’s patients’ skin.

Some patients report the “crawling feeling” without the threads, lesions or other symptoms, Harvey said, and all seem to have easily testable immune deficiencies. All 17 of his “Morgellons’” patients in Houston have tested positive for the microbe associated with Lyme disease, he said.

Harvey said he treats the skin lesions with a lactic acid cream and all the other symptoms with high-dose antibiotics. He said the lesions heal over with treatment, but they leave blue indentations at the sites of the skin breaks. “That scar may give us a clue,” he said. “Something pathologic is happening there.”

His first two patients who have completed treatment for their borreliosis symptoms appear to have recovered their skin immunity and lost their “Morgellons’” sores as well, he said.

“Kill the infectious agent and the immune system appears to reset itself,” he said.

Harvey said physicians’ inability to see diseases before they are officially “discovered” in peer-reviewed journals isn’t rare.

“Diseases are defined within a box and thus everything outside that box isn’t the disease,” Harvey said. “That’s the way medicine and science evolves. All definitions in all texts change continuously. In this case we know enough to broaden the size of the box and know that in time we’ll get to the more fundamental reality.”

http://www.rgj.com/news/stories/html/2004/05/08/70309.php
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wembley8

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"had a mystery disease that seems like a plot device from the television show “The X-Files.”

Actually it DID feature in one episode (there must be some X-Files addict who can say which).

And it was in FT a while back...
 
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Harvey says all of his patients who show these symptoms have Lyme disease.

I think the simplest and likleliest answer may be that all of his patients have Lyme disease, a severe bacteriological infection that indeed causes lesions and has concurrent neurologic manifestions, among other symptoms.
 

Mighty_Emperor

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May 18, 2004


Mystery Illness/Parasites Said To Be Afflicting Idahoans


By Jon Hanian

Boise, ID -


Nampa resident Rebecca Hewitt doesn't like talking about it because she usually starts crying when she does.

"These is a real issue and people are being hurt by this and it is not fair,"she told Idaho 2 News. Rebecca is suffering from what she describes as a parasite afflicting her body that very few others believes exists. "It pretty much lets you know who are your friends and who aren't your friends. Because I tell you what, there were people out there who stood by me through this. And you start feeling so low on yourself and you are almost convinced you are sick in the head."

Rebecca's hair started falling out in patches. Her joints started swelling. She started getting lesions on her skin. "I was breaking out in boils." But perhaps the most unnerving part -- mysterious particles she calls parasites with fiber -like filaments started appearing creating stinging and crawling sensations underneath her skin. "It is like a cottony fiber on your skin. It is really hard to explain. You get scared. You are afraid that it is going to take your life."

So Rebecca went to nine different doctors for help. Most of them diagnosed her as delusional. "So then you have this whole issue of 'don't tell anyone', you know. It is very emotional and it is a very mental disease because no one will listen to you."

But it is not just people in the Treasure Valley who are complaining about this thing. In the eastern Idaho rural farming community of Preston, we found another individual who claims to be afflicted by the same parasite.

"It all sounds crazy and it is crazy," says 44-year-old Daryl Crockett, a carpenter who says he is unable to work because of chronic fatigue and other neurological symptoms. He says he suffers from similar lesions on his body and swelling in his lower legs and joints. "They are just full of parasites."

He showed us numerous tiny specks on his skin. The specks are hard to see until you zoom in. Crockett believes they are a form of parasite associated with his symptoms. Crockett showed us a vial full of what he believes are the parasites infecting his body. "This is just a fraction of them. I could have brought a whole jug full."

A closer a look at what is inside the vial reveals what Crockett believes are parasites that he is convinced are making him sick. Because Crockett collected them on his own and not in a laboratory environment, it is impossible to know precisely what they are.

But Mary Leitao believes she knows what Daryl and Rebecca and hundreds of others around the country are complaining about. "We really don't know the true numbers. What we do know is that currently 729 people have reported these symptoms to us." Leitao is the executive director of the Morgellons Research Foundation headquartered in Pittsburgh. A biologist with a background in medical research, Leitao began investigating when her three-year-old son came down with the same symptoms as Daryl and Rebecca. "He was so insistent that there were bugs in his skin that I assumed he may have contracted scabies."

She treated him with the recommended cream for scabies. That is when she says organisms visible to the naked eye started coming out. "And when I put him to bed I looked at them under the microscope. I was confused at first because what I saw were not scabies. They were fibers, bundles of fibers. I guess you could describe them as fuzz balls."

The medical community is skeptical of Leitao's claims arguing that most of her so called evidence is anecdotal. There is also no "peer-reviewed" science yet to back up her assertions that these microscopic particles are in fact parasites. Even Leitao admits, "we saw no evidence in these specific samples of actual parasites that a lay-person might assume to be a parasite like a worm or a nematode. The organisms are more fungus like but highly unusual." Leitao says the medical community is skeptical because of something called the matchbox syndrome. "And that means any time somebody takes something in - - and in the old days it was in a match box - - to their physician and when they claimed that this came out of their skin, automatically that gives them a diagnosis of delusional parasitosis."

But Leitao has found a former noted NASA physician and epidemiologist who believes these people are not only telling the truth but maybe on the fore front of a startling new medical discovery. That part of the story tomorrow.

EXTERNAL LINKS
For more information click on the link: http://www.morgellons.com

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Mighty_Emperor

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And this si the followup mentioned:

May 19, 2004


Mystery Illness/Parasite Said To Be Afflicting Idahoans Getting Attention


By Jon Hanian

Some researchers believe Lyme bacteria linked to mystery illness
Boise, ID -


"Not only do they say I can't help you but they say and you are crazy too." There are people all over the country telling the same amazing story about parasites. "I was seeing too many strange things, actually seeing little creatures surface on my skin. I don't think we are all having this mass delusion, you know." Those comments came from people in northern California. But there are alarmingly similar stories coming from people in Idaho who claim to be afflicted by parasites that they say create stinging and crawling sensations under their skin. But most medical doctors do not believe those claims. "They say I have a problem but it is a mental problem. It is crazy, it is enough to make you mental."

Around the country, 729 people -- and just under a dozen in Idaho -- believe they are infected with a mystery illness many are calling a parasite while some clinical researchers believe it is linked to bacteria. "Actually there are ten patients in Idaho and I know three of them fairly well. I have spoken with them on the phone and I believe all ten of them. Because what they report to me is very consistent with what we have seen,” says Mary Leitao, a Pittsburgh-based medical researcher.

Leitao is a biologist by training and an investigator of this unknown medical condition by necessity. She began clinically studying it when her three-year-old son showed her an unknown organism coming out his lip and on his heels. When she first spoke with dozens of other people who claimed to suffer from the same type of unusual skin lesions, they said, "The physicians will not acknowledge this. They are telling us we are all delusional and we have what is known as delusional parasitosis."

So Leitao began doing her own research, started a website and a foundation called the Morgellons Research Foundation based on comparing what was she saw coming out her child and the name of an obscure 400 year old medical manuscript with drawings of an ancient parasite that looked the same. "The microscopic drawings of Morgellons were done in the 1600's. Since this was the only thing that was even similar to what we were seeing under the microscope, we decided to base our name on that."

Leitao admits the medical community is slow to recognize the problem and believes that most of her evidence is anecdotal. In other words, medical officials are concerned that the "evidence" thus far amounts to clinical experiences based on individual cases, rather than an organized investigation with appropriate scientifically approved controls. Adding to her problem, there are no "peer-reviewed" medical studies to document the problem. Local health officials in Idaho contacted by Idaho 2 News declined to be interviewed for this story citing similar concerns.

But a former NASA physician and epidemiologist based in Houston believes there is an infectious bacteria at the heart of this problem. Dr. William Harvey is the current chairman of the NASA Education Advisory Committee. He has documented more than 565 of these (Borreliosis) cases in Texas and says 94% of (those with Morgellons’ skin lesions) have tested positive for the bacteria associated with Lyme disease, or Borreliosis. "I think we are a looking at a major problem that has been unrecognized in humanity right now."

Harvey co-authored a published medical study concluding the bacteria Borrelia burgdorferi, associated with Lyme disease, could be at the heart of a widely unknown misdiagnosed infection. In 2003 Harvey published his research in the medical journal Medical Hypotheses. His article 'Lyme Disease': Ancient Engine of an Unrecognized Borreliosis Pandemic, suggests that the bacteria associated with Lyme disease is much more widely distributed. "The yet-unrecognized form appears to have a broader clinical presentation, wider geographic distribution, and vastly greater prevalence," Harvey wrote in his report. He says research suggests it attacks the immune system in a specific way rendering it susceptible to these unusual organisms. "The lab tests that we do are predictably showing certain immune damage and it is consistent from patient to patient to patient to patient."

Harvey believes the bacteria is the bigger problem. But the so-called parasites, which have yet to be clinically proven in a controlled laboratory setting, do have highly unusual characteristics as seen through a scanning electron microscope. Leitao says they also defy being easily identified. "What we see are branching structures very fungus like but so large, these fibers, these hyphae are so large that they can not be any of the known fungi." Harvey says some of the "filaments" have been confirmed as the infectious yeast Candida tropicalis.

Conventional wisdom says ticks spread the bacteria associated with Lyme disease. But Dr. Harvey's research suggests that bacteria maybe spread through casual and congenital human contact. Whatever it is, people like Rebecca Hewitt of Nampa who believes she has it, are desperate for a cure. "I honestly believe there are a lot more people out there with it that have given up." The ones who have not given up like Daryl Crockett admit it is a day to day struggle. "I really am trying to tough this out."

Crockett has tried to cure himself with all kinds of ointments, salves, and over the counter drug store items so far to no avail. Leitao says expensive antibiotics have shown some positive results. "Recently people have begun to be treated extremely aggressively with very strong I.V. antibiotics and that seems to be pulling people out of this disease the fastest." The aggressive antibiotic treatment Dr. Harvey has been using with Morgellons patients is the antibiotic Rocephin administered through a central line. In the meantime the research continues, as does the suffering of people who say they are desperate for help.

EXTERNAL LINKS
For more information click on the link: http://www.morgellons.com
You must have Adobe Acrobat to access Dr. Harvey's report (pdf file): http://www.ilads.org/harvey.pdf

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Mighty_Emperor

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Mysterious skin disease puzzles patients

06:59 PM CST on Tuesday, November 9, 2004

by Celine McArthur / Healthvue Reporter

A mysterious skin disease is surfacing in Austin called Morgellons. It's a parasite-like disease that makes people feel like they have bugs crawling under their skin. The condition is a medical mystery. So, more often then not, it's diagnosed as a psychological disorder. That's where some patients say their troubles begin.

"When you lay down, as soon as your head hits the pillow, your hair starts crawling," says Becky Bailey.

"It gives you the sensation that you have worms under your skin or rats crawling on you," says Miles Lawrence.

These two people suffer from the rare skin disease called Morgellons.

"We really don't know what it is," says Ginger Savely.

But nurse practitioner Ginger Savely says she's seeing more patients in her clinic with the symptoms, like painful skin ulcers that spring blue fibers, white threads, and little black specks of sand-like material.

"Talking about it just sounds crazy but there are just a lot of things that come out of their skin," says Savely.

Doctors don't know what causes Morgellons, but Savely may have found a clue.

"About 10 percent of my patients with chronic Lyme disease have symptoms of this Morgellons," says Savely.

Savely specializes in Lyme Disease. She says people with the tick-borne disease have weaker immune systems and may be more vulnerable to the infection.

But health experts don't know for sure. One reason is there hasn't been much research on Morgellon's -- federally or by the Texas Department of Health.

That's because the disease isn't recognized as an official disease. Without that distinction, research doesn't get federal or state funding.

Because so little is known about the disease, 28-year-old Miles Lawrence had a difficult time getting doctors to take him seriously.

"They'll look at you funny. They give you this instant judgement, like 'OK, You're on drugs. You're seeing things,'" says Miles.

That's why 41-year-old Becky Bailey says she's living a nightmare.

"I knock myself out every night with drugs so I can sleep," says Becky.

So far Miles and Becky's only relief is one nurse practitioner, Ginger Savely, who listens.

"This is real and something that needs to be recognized and treated," says Miles.

"Not to turn away a patient that has symptoms like we're describing because you may send them home to their deaths," says Becky.

There are 1,100 hundred known cases in the U.S. Most of them are in Texas, California and Florida. Doctors are trying to find out why. For more information on Morgellons, go to the Morgellons Research Foundation at http://www.morgellons.org.

http://www.kvue.com/news/local/stories/110904kvueHealth-eh.3f4d4cc0.html
 

wembley8

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The problem is that delusional parasitosis is such a well-established condition that odd cases of real parasitosis may get missed:

"Despite the presence of personality traits or psychiatric symptoms which corroborate a diagnosis of delusions of parasitosis, the patient is sometimes infested. The reader is referred to a paper by Traver (1951) where she describes her suffering through a seven year infestation by the mite Dermatophagoides schermetewskyi Bogdanow. Unlike Sarcoptes scabei which is easily located in epidermal burrows, this beastie inhabits the dermis, and could not be found. The response of the physicians she consulted was quite predictable when Traver presented with formication, classical self induced excoriation, a history of trying a long list of chemical remedies, and two adult female family members living with her with identical symptoms. "

http://medent.usyd.edu.au/fact/delpara.htm

Seven year itch...
 

Mighty_Emperor

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Mystery Illness Baffles Doctors; Frustrates Patients

POSTED: 7:43 pm PST February 6, 2005
UPDATED: 7:47 am PST February 7, 2005

SAUSALITO -- Is an unknown disease hitting the Bay Area or is it just a case of mass delusion? If you ask intensive care nurse Cindy Casey she'll tell you that the mystery disease is very real and very painful.



Casey is one of at least 150 Bay Area residents battling the illness that is characterized by lesions and strange string-like fibers.

"It sounds really strange, it's kind of understandable why people don't believe us, because it sounds so weird," Casey said. "The lesions start out as bumps that are itchy, little round raised bumps. The fibers are quite alarming."

When she turned to doctors for help, her frustrations began to mount. Casey said dermatologists at her own hospital suggested she was mentally ill.

"It sounds so bizarre to them that they take the quick way out and say this can't be, you've got to be delusional or making this up," she said.

Susan Bishop of Santa Rosa has a similar story.

"It's the overall pain I have every day, my joints hurt," she said. "

For some, the pain and frustration simply gets to be too much. That was the case, friends and family say, for Dillon King of Soquel. Last month, friends and family eulogized the 37-year-old former medical assistant after he committed suicide.

"It was really so depressing the hardest thing was seeing him just get worse all the time," said Wendy Augason, King's mother.

King's fiancée -- Elizabeth Strong -- says she's certain he picked up some kind of weird infection and that she's now beginning to show the same symptoms.

"It started as a small sore and kept spreading," she said. "I had doctors tell me that basically, it was delusional, then because it was the two of us with it we were feeding on each other, and egging each other on."

KTVU broke this story last year and now we've learned more than 1,200 people nationwide say they have the same skin lesions and bizarre fibers. Ironically, most are in the medical profession. Adults as well as children have it and it may be contagious.

Evidence is beginning to mount linking this syndrome to Lyme Disease from tick bites.

"The population of people with Lyme Disease believe this is another infection that travels with the Lyme organism," said Dr. Jennifer Choate, a hematologist who helped treat Dillon. "It makes sense because it is in that group we are seeing this pattern."

Marin microbiologist Jenny Haverty has also be studying the mystery malady.

"I accepted specimens from four different people in four different counties in the Bay Area, and I looked at them very carefully over and over again under the microscope," she said. "The colors and shapes of the fibers of each individual were very, very similar."

Tests on similar fibers taken from Bishop's skin and those of several other patients in the Bay Area show them to be tiny tubes of protein. But how and why the filaments are formed remains a mystery for now.

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Mighty_Emperor

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Posted on Mon, Mar. 14, 2005

Mysterious lesions defy definition

By Sandy Kleffman

CONTRA COSTA TIMES

At first, they looked like tick bites. Then they grew itchy and painful and became open, weeping wounds.

The lesions spread across much of Tina Solovieff's body -- her back, arms, legs and feet.

What happened next stunned and horrified her.

The 51-year-old El Cerrito resident noticed strange, stringlike fibers emerging from the lesions -- unlike anything she had seen, despite working for years as an intensive care nurse.

Hundreds of people in California, Florida, Texas and elsewhere tell similar stories of a mysterious skin condition they have dubbed Morgellons in honor of the first suspected case, described 400 years ago.

Is a new, unknown disease striking these regions? Or is it simply "delusional parasitosis," a condition in which people falsely believe they are infested by parasites?

Medical experts are divided. Most remain skeptical, if they have heard of Morgellons at all.

But Dr. Raphael Stricker, a San Francisco Lyme disease specialist, believes the condition is real.

"It's a very bizarre kind of symptom, and I think it's been trivialized in the past," Stricker said.

"But people are starting to pay more attention because there are more and more patients who seem to have it."

Today, more than 1,500 sufferers have registered with the Morgellons Research Foundation, including 400 from California. Hot spots in addition to the Bay Area include Los Angeles, Houston, Dallas and Austin, Texas, and the state of Florida. Registrants come from every state and 13 countries.

"There's a large proportion who are either nurses or teachers," noted Stricker. That only compounds the mystery.

CDC: Guarded interest

Dr. Julie Gerberding, director of the national Centers for Disease Control and Prevention, wrote to a Florida senator last year that such unknown skin conditions have been "matters of concern" to the CDC for some time.

The agency examined 50 photos of lesions or objects and identified no parasites.

"We encourage the submission of specimens stored under proper conditions to either state or CDC laboratories for testing," Gerberding wrote.

To date, the CDC has received no such specimens from clinicians.

But Stricker noted the agency has not widely publicized how or to whom to send specimens.

"The CDC has no program to test Morgellons," he said. "They're being a little disingenuous."

Morgellons sufferers say they have difficulty finding any medical expert who will take them seriously.

San Ramon resident Lien Kingsford, a 39-year-old document control coordinator, first noticed swelling and lesions on her foot after returning two years ago from a camping trip in Calistoga where she wore sandals.

Soon she had a crawling sensation under her skin. The lesions then spread to her face, neck, ears, arms and stomach. Doctors dismissed her.

"They would look at it with the naked eye and say stop scratching it," she said.

Hoping to rid her body of the mystery, Kingsford entered what she calls her compulsive phase.

"I got into this madness of cleaning, cleaning, cleaning," she said. Surviving on only a few hours of sleep each night, she vacuumed every room and used "every product known to mankind for sterilizing."

Solovieff, who became ill three years ago, has gone from doctor to doctor and been told repeatedly she is delusional. "You've got to stop picking at your skin," they said.

The 'matchbox sign'

One reason the delusional parasitosis diagnosis comes so quickly is that Morgellons patients often meet the classic definition of the syndrome.

In medical school, doctors learn to watch for the "matchbox sign," when people bring in small boxes of dust, lint, scabs or hair to "prove" their parasite infestations.

Morgellons sufferers often bring in their fibers.

Dr. Dan Eisen, a UC Davis dermatologist who had not heard of Morgellons, said people frequently present things for him to examine.

"We'll look at it under the microscope, and we never find anything," he said. "Really, the patients function normally except for the fact that they have this one delusion."

Skeptics say the Morgellons fibers are most likely from materials that come in contact with the lesions.

But Stricker, who is treating six people with the condition, disagrees.

"It's really more than that because you can see them coming through the skin," he said.

Jenny Haverty, a clinical microbiologist at Marin General Hospital, also believes the condition is real. Her adult daughter began noticing the fibers emerging from various parts of her body in 2003, but she has never had lesions.

"It's just disgusting," Haverty said. "It's all over her shower and her bedding. It's pretty frightening.

"I've showed it to my co-workers, and they're all horrified," she added. "They're horrified that the medical community isn't open to this."

Haverty used a microscope to examine fibers from four people, each living in a different Bay Area county. She discovered black, red, brown and clear fibers. Each person also had fibers that turned aqua blue under a fluorescent microscope. Many of the fibers had similar sizes and shapes.

A parasite? A fungus?

There are several theories about possible causes. Sufferers often report biting and crawling sensations, but no one to date has discovered a parasite. Haverty placed a specimen in a culture solution, but no known fungus emerged.

Some speculate there might be an association with Lyme disease. Morgellons patients often test positive for Borrelia burgdorferi, the bacteria that causes Lyme.

Stricker has noticed that antibiotics used to treat Lyme often help with Morgellons, but he doesn't know why.

Adding to the mystery, not every Morgellons patient tests positive for Lyme disease.

After conferring with the CDC, California health officials have decided to let others take the lead on investigating Morgellons at this time.

"Patients with such skin conditions would best benefit from a thorough clinical and laboratory evaluation by medical specialists, preferably at a university medical center," said state health department spokeswoman Lea Brooks.

Most people suffered in isolation until Mary Leitao formed the Morgellons Research Foundation several years ago.

Leitao, a biologist, grew concerned when her then-2-year-old son, Drew, developed the condition. Rushing to the Internet, she found others who had dealt with the lesions for years.

"They pretty much told me it has ruined their lives," she said.

Coping month to month

Solovieff quit her job as an intensive care nurse in 1984. Seventeen years later, she noticed what appeared to be several small tick bites. She lived in a Berkeley hills home at the time surrounded by a wooded area.

The bumps got bigger and deeper and spread throughout her body.

"I would go to bed and I would be itching so badly that it would literally keep me up at night," Solovieff said.

She began keeping voluminous records of the weird, multicolored fibers she plucked from her lesions. She taped them to bits of paper with the date and location where she found them.

That only increased the skepticism of doctors.

The disease began to consume Solovieff's life. She lost a relationship and was asked to leave a public pool until her sores healed.

"There's a real shame factor to this," she said.

Like many others, Solovieff has found the lesions come and go. This month, she has just one lesion on the back of her leg, but her body bears the scars of previous outbreaks.

For some, it all gets to be too much. Redwood City resident Kathleena Ames, 52, recently spent several days in the psychiatric unit at Stanford Medical Center after her boyfriend rushed her there, telling them she was suicidal.

"I couldn't take it anymore," she said in a phone interview. She has had symptoms since 2000.

Kingsford found her way to cope after her brother almost died last November.

Sitting with her family in the hospital, she realized many people have bigger problems. She found comfort in a renewed religious faith and now hopes to help others who suffer from Morgellons.

"I'm hanging around waiting for some miracle drug to come out. If this is the way I have to spend the rest of my life, I'm OK with it. I still have lesions, but I refuse to let it consume my life."

Source
 

rynner2

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From the first story:
Dr. Peter Lynch, professor emeritus in dermatology at the University of California, Davis, said the attempt to identify a physiological reason for delusional parasitosis symptoms is “a convenient way not to have to deal with a psychological problem.”
Equally, it seems to me, the insistance that it is a psychological problem is a convenient way not to have to deal with a physiological problem! 8)

So, which end should we crack our eggs? :D
 
A

Anonymous

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Both Endians methinks Rynner. Clearly there are delusions (e.g. formication) involving the client believing that they are infested with insects/lice etc on or under the skin. Equally, it appears that many skin problems can be caused by 'wee beasties'. Thus it seems reasonable to conclude that not only one or the other can occur, but both. Indeed, one could be infested and have delusions, which would be compounded by evidence of the bugs. Or, it also seems reasonable to conclude that perhaps the immune system has different signals for different infections. Perhaps one signal induces a message that says 'bugs, bacteria or lurgeys' etc at a chemical level...the cognitive interpretation (if you will) is to provide 'formication' as an alarm. I don't say why this problem has to be an A or B category diagnosis - a dimensional (orthogonal or not) approach would stimulate (possibly) greater research and offer, IMO, better psychological and physiological care to the patient.
 

SFegredo

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Dunno what to think about this one, but my two penn'orth is that I have allergic eczema on my feet, triggered by the glue in shoes :roll: and that feels like worms crawling under my skin, but the actually problem is that the structure of the skin breaks down and the cell contents collect together in little waterfilled blisters. Because the skin is breaking down it becomes very easily damaged. The blisters itch so badly that I have been know to attack my feet with a hair brush (sorry...bit icky here) and tear at the skin until it bleeds, because that's the only way I can bear the itching. all sounds a bit mad and psychosomatic, but as soon as I stop wearing the offending shoes it clears up in about a week. Needless to say that I had a whole battery of tests to make sure I didn't have either fungal or parasitic infections. However, once the skin is opn I get secondary infection which make it worse and they would respond to antibiotics, which would give the appearance of a cure for a short time.

If you don't get eczema you will think this is absolutely gross, but almost every sufferer I have ever spoken to has talked about the severity of the itching in the same way, even to the point of discussing what instrument is the best means of scraping at your skin to stop it.

I have to say that the pics of Morgellons look like my feet, but surely medics would have thought of eczema as a first option and treated accordingly????
 

Dingo667

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Which pics?
The one with the leg?
If there are any others I'm too stupid to find them, could someone "gently" point them out for me pleeeze?

Strangely enough this reminds me of the old article from Pravda, where peoples cells turned into plant matter or something. Can't find the thread anymore. But there were also fibres groing out of their skins. Maybe its similar but has a different name in russian?

BTW I'm not lazy but really tired, still at work and can't be arsed anymore...
 

crunchy5

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It appears the CDC are taking it seriously now.

http://tinyurl.com/htl9a

Deborah Knapp
KENS 5 Eyewitness News

The Centers for Disease Control and Prevention has launched an investigation into the skin condition called Morgellons disease.

Since a story about Morgellons first aired on KENS 5 Eyewitness News, the station has been inundated with e-mails and phone calls from the medical community and others how claim to have the symptoms described in the story. The story has received tens of thousands of page views on the MySanAntonio.com

The story was how Les Coble of Pleasanton found out he was not alone.

“God, I’m not crazy, there are other people with this,” Coble said.

Coble is covered with lesions and says he has the sensation of bugs crawling under his skin

People have claimed fibers actually pop out of their skin.

“When one of those fibers come out, you just gotta get it out of you,” Coble said. “They're painful as anything."

The victims aren't the only ones who have seen the fibers. Ginger Savely has also seen the fibers. While working as a nurse practitioner in Austin, she has treated more than a hundred Morgellons patients.

“Little white fibers would come up and go down, come up and go down in the palm of his hand. I saw that myself,” Savely said of Coble.

Coble also has another strange symptom of this condition, a black tarry substance that oozes out of the lesions.
 

Dingo667

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Found this picture, might be of interest. It shows the colourful fibres:

http://www.morgellonsusa.com/

There are more pictures further on the site. Looking at them they do look like wooly bits, maybe caught in dry skin?
 

PeniG

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Look at the areas affected. We don't wear "woolly bits" for 90% of the year in this state. It is cold almost continuously in January; sporadically cold or chilly from October through November interspersed with warm periods; and spring starts in February. If this only happened on the days you wore your sweatshirt, and only on the parts covered by the sweatshirt, you'd quickly cure yourself by only wearing sweats with a long-sleeved cotton shirt against your skin.

I'm glad the CDC has begun to take it seriously. I have never met anyone with this condition, but I and mine have been through sufficient medhell to relate. It's bad enough to suffer without having bored doctors tell you they don't know what it is, so it must not be anything serious and you should try the new, exciting, and expensive medhell of looking for a psychiatric diagnosis. You Brits would be shocked at the percentage of Texans who have no medical coverage at all, too - most of these people are paying top dollar to get sniffily dismissed.
 

crunchy5

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Some progress appears to be happening.

http://www.ktvu.com/news/9264350/detail.html




Oklahoma State University Professor Randy Wymore was the first scientist to conduct research on this disconcerting disease. He says it's the biggest mystery he's ever been involved in.

The UC Davis trained physiologist is leading a medical team at Oklahoma State University in Tulsa, researching what is now called Morgellons Disease.

With cooperation from the Centers for Disease Control and Prevention, Wymore's team is studying Bay Area patients and others from around the country. His first finding disputes the frequent diagnosis of delusions.

"Pathologists and dermatologists and lab reports [said] that these were textile fibers appearing in the skin of the sufferers. Now that's just not true, to be perfectly blunt about it," says Prof. Wymore.

Wymore says his tests rule out not only textile fibers, but also worms, insects, animal material and even human skin and hair. He says the filaments are not an external contamination.

Instead, they are a substance that materializes somehow inside the body, apparent artifacts of something infectious. More results are expected soon. And Wymore says skin problems are not the worst symptoms.

He says a neurotoxin or microorganism may disturb muscle control and memory.

"The neurological effects are the much more severe, life altering and much more dangerous of the conditions," explains Prof. Wymore.

This month, Georgia began a statewide Morgellons registry. Prof. Wymore says he is about to begin a clinical trial and offers this to sufferers: "We know there's something going on here. You're not delusional."

Prof. Wymore has just released an open letter to doctors treating patients with Morgellons symptoms. It asks physicians to take it seriously, saying these patients are likely suffering from a still untreatable emerging disease.

Former Oakland A's pitcher Billy Koch has it. And so do his wife and their three children. And though they can afford top medical care, doctors have no answers.

It started in Oakland four years ago. Koch saved 44 games and was the top reliever in the major leagues. His fastball wowed crowds. And then the strangeness began.

"He freaked out. He wanted to ignore it … I wanted to too. But when it comes to your kids, you gotta stop ignoring it," said Koch's wife Brandi.
 

crunchy5

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http://www.livescience.com/humanbiology ... llons.html

Reports of a mysterious medical condition are cropping up across the country but doctors are divided on whether it is a real disease or all in their patients' heads.

Called Morgellons Disease, patients who report having it describe sensations of creepy-crawlers beneath the skin and fibrous filaments oozing out of open wounds.

Interest in the disease was recently rekindled after afflicted Texas teenager Travis Wilson committed suicide about a month ago.

Symptoms

To date, no clinical studies have looked into Morgellons and only one paper mentioning Morgellons has been published in a medical journal. Appearing in a recent issue of the American Journal of Clinical Dermatology, the paper is co-authored by members of the Morgellons Research Foundation, a non-profit organization devoted to raising public awareness about the disease.

As of February 2006, more than 2,000 reports of the disease have been reported on the Foundation's website. Reports come from all 50 U.S. states and 15 nations, including Canada, the UK, Australia and The Netherlands.

The majority of reports have come from Texas, California and Florida.

Patients with the disease often describe feelings of insects or parasites scuttling beneath their skin and open lesions that heal slowly and which ooze out blue and white fibers, some as thick as spaghetti strands. Attempts to remove the fibers are said to elicit shooting pains radiating from the site

I note in the quote from the article that they have reports from the UK.
 

crunchy5

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CDC sends Morgellons investigators to California.

http://tinyurl.com/yhknr8

Atlanta — The Centers for Disease Control and Prevention (CDC) is sending a team of investigators into California as a beginning step in its recently announced decision to investigate Morgellons disease, a mysterious condition heretofore diagnosed by most physicians as a psychotic disorder.

CDC spokesman Dan Rutz, M.P.H., tells Dermatology Times that at least three investigators (to include an epidemiologist and mental-health and infectious-disease specialists) — and more likely four, including a dermatologist — were to arrive at the end of September and set up shop in the Los Angeles area. According to the Morgellons Research Foundation, Southern California — along with the San Francisco Bay region and parts of Texas and Florida — is one of the "cluster areas" in which the disease has been frequently reported.

In addition, the CDC has implemented a Morgellons information and voicemail line at (404) 718-1199, which people who believe they may have the disease can call for help.

"We're trying to cast as wide a net as possible in our effort to investigate Morgellons, which is why we've included the various specialists and want to include a dermatologist," Mr. Rutz says.

"We actually had planned to start sooner and be in the field already, but we've had to overcome some obstacles and so there have been delays. One of our objectives is to find clinical space in the Los Angeles area."

Morgellons in the news

Morgellons disease has received significant publicity over the past couple of years — due largely to the efforts of the nonprofit Morgellons Research Foundation — as something of a mystery affliction.

Indeed, Morgellons was featured in August in a "Medical Mysteries" segment on ABC's "PrimeTime Live."

No clinical studies have been done on Morgellons. Its reported symptoms include sensations of crawling, stinging and biting under the skin; skin lesions that range from minor to disfiguring in their appearance; and the appearance of fiber-like material that sometimes can be removed from the lesions as either single strands or clusters of fibrous material. Patients complain of disabling fatigue, joint pain, hair loss, vision problems, neurologic disorders and occasional disintegration of previously healthy teeth. Many sufferers say they have had to quit their jobs.
 

OldTimeRadio

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Twenty-six years ago I had TWO really bad bouts with "swimmer's ear." I never before realized that the condition could be so extremely painful. (My physician at that time told me that he currently had a city cop in the hospital on suicide watch because of concern that he might kill himself to escape the pain.)

One of the symptoms I had was that there were "bugs" crawling around inside my skull, and that I was somehow impossibly and maybe even incurably "dirty."

However, all through this I realized that these symptoms were delusions caused by the incapacitating pain.
 

firefly52

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This 'Morgellons disease' and 'orthdox' medicines approach to it, serves to remind me of how closed minded, and arrogant some in the medical world can be.
Just because their technology is currently unable to detect a thing, does not mean that thing is not there!
I truly believe that some people are simply more 'sensitive' than others, and might be aware of certain bodily conditions that other's arn't.
And in the case of so called 'Morgellons disease' maybe being 'Thin skinned' is both literal and figurative.
And as for the Doctors who have been rude enough to label those who have this condition, and their friends who belive they have this condition, as "folie a deux" etc.. I have come up with a diagnosis for them. It is called 'Folie a ego'!
 

jefflovestone

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crunchy5 said:
Some interesting videos and photo's of supposed morgellons fibres.

http://tinyurl.com/yjlw7w

Cheers for that, I'd have never thought to look on there for this kind of material (no pun intended).

Here's some more

A disease in which individuals have the growth of fibers from their skin that burn at 1,700 degrees F and do not melt. (20)(* see below) A private study to determine the chemical and biological composition of these fibers has shown that the fibers' outer casing is made up of high density polyethylene fiber (HDPE).
:shock:
 

OneWingedBird

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Is it just me, or do none of the 'photos' of the fibres actually look like anything? I'm not trying to come at this as a sceptic, and i certainly think the fibre analysis (if it proves accurate) is fascinating, but i've had really bad excema in the past and know how easily any bit of fluff or general crud gets caught in it when it's sore/weeping, and sticks there when it dries... thankfully it's been years since i've had to physically peel my bed clothes off the offending areas...


A disease in which individuals have the growth of fibers from their skin that burn at 1,700 degrees F and do not melt. (20)(* see below) A private study to determine the chemical and biological composition of these fibers has shown that the fibers' outer casing is made up of high density polyethylene fiber (HDPE).

HDPE is used in quite a lot of things:

* Containers
o Tupperware
o Laundry detergent bottles
o Milk cartons
o Fuel tanks for cars
* Plastic bags
* Containment of certain chemicals
* Chemical-resistant piping systems
* Geothermal heat transfer piping systems
* Natural gas distribution pipe systems
* Water distribution pipe systems
* Coax cable inner insulators (dielectric insulating spacer)
* Root Barrier

but it's difficult to see how we're getting from these to fibrous tubules on the skin - hairlike residue from the thread being cut on the HDPE bottles? some natural process slewing it off the inside of pipes?
 
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