||Canadian Lyme Disease Foundation Bulletin Board
For Lyme Information and Discussion
Joined: 01 Aug 2006
|Posted: Thu Sep 28, 2006 11:23 am Post subject:
|Wow! what a scarey disease. I hope that you find something that helps. It seems that there is a huge lack of information about this one. Even worse than Lyme! Perhaps some naturopathic immunity boosters might help??
Joined: 21 Aug 2006
|Posted: Mon Oct 02, 2006 2:07 am Post subject:
|Two years ago I was hospitalized for delusory parisitosis following several weeks of intense itching and increasingly heightened anxiety. The doctors concluded that I was overmedicated for my bipolar disorder. Strange thing is, the symptoms keep returning despite medication adjustments.
A few months ago I learned of Morgellons, which led me to investigate Lyme. My health fell into rapid decline six years ago, and I've since been diagnosed with bipolar, gastroesophagul reflux disease and gout, and I've suffered myriad other problems including intestinal tract infections, kidney problems, chronic fatigue, etc. Right now I am in the process of investigating the possiblity that I have Lyme, as I came back covered in ticks from a hike back in 1999. It didn't occur to me at the time that I should be alarmed.
I've come to the belief that Morgellons is probably the "halfway point" between Lyme and delusory parisitosis. Even though I believed I saw things moving in and out of my skin, I am pretty sure this was delusion. Lint presented as evidence of disease just does not hold up anywhere and it makes Morgellons sufferers look kookier than those who accept psychiatric diagnoses.
However, I've come to believe that perhaps what is happening to people with Morgellons is that the Lyme is triggering psychotic reactions. It makes sense that a "bug" within the body could produce a sickness that makes one sense or feel bugs outside the body. At the height of the episode I was hospitalized for I was extremely frightened, and when that happens the most ancient parts of your brain, like the reptilian brain stem, take over. This incident might've been an alarm trying to wake me up to Lyme. On the way to the hospital I saw a tick-like apparition cross over my eye.
I would urge caution in treating your skin. Pesticides like kwellada will do more harm than good (it is banned in several countries). You may find that anti-anxiety medications might relieve some of the hysterical symptoms, while some kind of mild ointment might provide relief for your skin.
I'm not trying to trivialize the symptoms of Morgellons, as it is very serious, and very scary. I just think there are far more reasonable explanations than those presently offered by the core of Morgellons researchers. Uncovering the Lyme connection was the first step, now somebody just needs to connect the dots to neurological symptoms.
Joined: 09 Feb 2006
|Posted: Thu Oct 26, 2006 7:01 pm Post subject: Morgellons
I appreciate that I saw this posting on another forum after the airing... but perhaps it will direct you for more research into Morgellons.
CAUSE OF MORGELLONS REVEALED?
Posted By: Daystar <Send E-Mail>
Date: Thursday, 26 October 2006, 10:08 a.m.
Hello everyone.... .Tonight on Tropic Wave Radio on Sue Vogan's "In
Short Order" there will be an extremely interesting and qualified
guest speaking on the subject of Morgellons Disease, Lyme Disease,
Chronic Fatigue Syndrome and the possible cause. Please tune in to
this most important broadcast.
>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>>
On In Short Order, Thursday, October 26th at 9:00PM EST, Sue Vogan
will be speaking with Dr. Hildegarde Staninger -- new findings in
the world of Morgellons.
A 57-year-old woman donates knee specimens to Dr. Staninger to
perhaps learn what had been causing her difficulties. The findings
are frightening -- we call it Morgellons. Dr. Staninger's findings
are pending publication in the Journal of Pathology.
Dr. Hildegarde Staninger is among the leading international
scientists in the field of industrial toxicology. Her research has
opened the door of proteinomics, enzynomics and genomics as
recognized by John Hopkins/Pandey Lab and Harvard University's
Medical College's small molecule genome project.
Her credits include Research Coordinator and Assistant Professor for
the Research Department at Capital University of Integrative
Medicine, two Presidential Awards from Mr. Walter Lowry, Martin
Marietta Orlando Aerospace President and the prestigious 7th U.S.
Army and Greater Stuttgart Community Award for her work during
Operation Desert Shield in preventing increased chronic obstructive
pulmonary disease (COPD) from the Kuwaiti burning oil fields during
Dr. Staninger will tell us what to look for, where it comes from and
what makes this malady so alarming. You will be surprised what has
been discovered about Chronic Fatigue Syndrome (CFS), too. Lyme
disease victims will also want to tune in -- we want to know if
there's a connection between Morgellons and Lyme disease.
You may read about this in the media sometime in the future...but
tune in to In Short Order and hear it LIVE this Thursday.
If you or someone you know has suffered Morgellons, CFS, or Lyme
disease, please tune to In Short Order.
You are encouraged to phone in questions or comments during this
In order to keep bringing you shows such as this one, we depend on
sponsors. Please think about becoming a sponsor. Ads are
professionally done or you may wish to donate with no ad. Please
make the decision to keep the truth on Tropic Wave Radio through
your generosity. Please call 1-321-253-9287 and let Tropic Wave
Radio know you want In Short Order to continue being heard.
The call-in hours are Thursdays, 6PM Pacific - 8PM Central - 9PM
Eastern USA and Canada Toll Free Line is 1-888-762-8153 extension
897 International Callers may call 1-321-253-9667 The worldwide show
at http://www.highway2 health.net
Sue Vogan is a published author, book reviewer for BookPleasures,
and a Lyme disease advocate.
Author, Book Reviewer, and Radio Show Host
http://www.betrayed soldiers. org
A member of the National Association of Women Writers at
A member of the National Baby Boomers Women at www.nabbw.com
Lyme Disease info at www.CTLymeDisease. org
Lyme Fraud at www.actionlyme. org
Joined: 09 Feb 2006
|Posted: Tue Sep 18, 2007 8:19 pm Post subject: Are there any Morgellons sufferers in this forum?
The Wall Street Journal On-line
September 13, 2007, 2:11 pm
Disease or Delusion? New Findings in Morgellons Debate
Recent tests lend some credence to the self-proclaimed sufferers of
Morgellons disease, who complain of symptoms that are almost
indentical to ones commonly imagined by paranoiacs and
schizophrenics, writes Daniel Elkan in the New Scientist
The Internet has allowed thousands of Morgellons, as they call
themselves, to group together and call for recognition in recent
years, mainly thanks to the Web site of the nonprofit Morgellons
Research Foundation. (The name comes from a 17th century medical
treatise on a similar condition) Most doctors are skeptical of their
Morgellons say they have black fibers growing from their skin and
something itchy crawling underneath it. People with a psychiatric
illness known as delusional parasitosis, or DP, complain of the same
thing. Morgellons tend to have other hallmarks of DP, including
depression and a habit of bringing small containers filled with
fibers as proof to doctors.
"When [individuals with DP] read about Morgellons disease they get
emotional comfort and temporarily feel better about themselves,"
says Jennifer Biglow, a dermatologist at Skin Specialists in
Minnesota. What they need, she says, is antipsychotic drugs.
Still, some researchers have found they can't easily dismiss some of
the Morgellons' symptoms, although none of their research has yet
been peer reviewed. Randy Wymore, a pharmacologist at Oklahoma State
University in Tulsa, says his samples of fibers from Morgellons
closely match each other, but not roughly 880 common environmental
fibers he has checked. Tests by other scientists suggest the fibers
might be fungi or that the lesions are due to a bacterium that
causes tumors in plants.
Robert Bransfield, associate director of psychiatry at Riverview
Medical Center in New Jersey, notes that many Morgellons, unlike
most DP sufferers, were in a normal mental state before they began
to complain. He thinks a parasite might be responsible. Either way,
the controversy has led the Centers for Disease Control to announce
a formal investigation into the condition to hopefully settle it.
– Robin Moroney
Additional on-line articles:
The Daily Green
Morgellons: Emerging Disease or Nanofiber Assault by Doctor X?
Joined: 09 Feb 2006
|Posted: Fri Jan 18, 2008 6:54 pm Post subject: Are there any Morgellons sufferers in this forum?
|I am not sure if this was a repeat of an earlier program on Morgellons, but it is nice to see that (at least) this 'odd' illness is being investigated by the CDC from the pressure put on them by the medical community (from my understanding) from all of the patients who have presented with these odd sores and/or demanding to be tested for Morgellons.
Whether they find and/or acknowledge that many of those with Morgellons like symptoms also happen to test positive for Lyme disease might be a strong bonus for those of us with Lyme and other co-infections...
CDC to Investigate Morgellons Mystery
Sufferers Say Mysterious Colored Fibers Grow on Their Skin, Like Hair
Jan. 16, 2008 -
The Centers for Disease Control and Prevention announced today that it is
launching a study to learn about an unexplained condition that causes people
to feel as if they have foreign substances growing from their bodies.
People with the condition, referred to as Morgellons disease, say they have
fibers and other inorganic material growing out of their skin.
"We earnestly want to learn more about this unexplained illness, which
affects the lives of those who suffer from it," said Dr. Michele Pearson,
principal investigator leading the study for the CDC, in a press release.
"Those who suffer have questions, and we want to help them."
"We have a team of epidemiologists, laboratorians and pathologists to carry
out the study," Pearson said.
The study will be conducted in conjunction with Kaiser Permanente's Northern
California Division of Research. For more information, visit the CDC's
Unexplained Dermopathy Web site (www.cdc.gov/ unexplaineddermo pathy)
Watch the story tonight on "Nightline" at 11:35 p.m. ET
In 2006, a number of Morgellons sufferers told ABC News in interviews that
when they consulted doctors, they received diagnoses they called wrong or
dismissive. Brandi Koch, the wife of former Major League Baseball player
Billy Koch [formerly of the Toronto Blue Jays], said that she felt as if she were living
in a horror movie, claiming she had colored fibers coming out of her skin.
Koch, of Clearwater Beach, Fla., said that her life was good until one day
in the shower when she noticed something strange -- tiny fibers running
through her skin.
"The fibers look like hair, and they're different colors," Koch said.
Koch said she knows that what she experienced "sounds crazy," but it's true.
"If I had a family member call me up and say, 'I have this stuff,' I'd say,
'I'm sending a straitjacket over. You need some help,'" she said.
Anne Dill described a similar condition. Looking at Dill's life in Florida,
she seemed to be living the American dream -- her three daughters excelled
in sports and were straight-A students.
But life in the Dill household was far from idyllic. Anne's 40-year-old
husband, Tom, died in January 2006, and she believes his death was due to a
contagious illness that has infected her entire family.
Dill described her family's skin: "There's this fibrous material. It's in
layers." Dill said the skin on their hands was particularly bad, very
swollen and itchy, and said it felt as if bugs were crawling underneath the
Dr. Greg Smith of Gainesville, Ga., has been a pediatrician for the past 30
years. He claimed that a fiber was coming out of his big toe, and he had
video footage to prove it.
"It felt like somebody stuck a pin in my toe and wiggled it, and it just
continued to hurt," Smith told ABC News in 2006.
He said he never thought he had bugs. "I've certainly had those crawling
sensations, and the fibers which come out of the skin are really bizarre,
and really odd."
Smith was handed over to a hospital psychiatrist when he went to the
emergency room complaining of a fiber in his eye. He admits that he, too,
would be skeptical if a patient came to him with the same story.
"I would wonder if they'd taken their medicine that day. It makes no sense.
It's totally bizarre. It's something that -- just telling the story is so
outlandish on the face of it -- that no one would believe it," Smith said.
Dill's doctor told her to stop scratching, even though many of her sores
were in places she could not reach.
Koch went to the Mayo Clinic, where doctors didn't believe that the fibers
she'd brought them had grown from her body.
"I saw the infectious disease doctor, and I showed him some samples that I
had and he snickered," she said. "I can't go through another doctor blowing
me off or looking at me like I'm crazy. I know I'm not."
Dr. Vincent DeLeo, chief of dermatology at New York's St. Lukes-Roosevelt
Medical Center, weighed in on what he'd say to someone who came to him with
this condition. "I don't think this is any different than many patients I've
seen who have excoriations and believe that there is something in their skin
causing this," he told ABC News in 2006.
DeLeo said the open lesions were most likely a result of scratching the skin.
Relying on Your Own Research
But biologist Mary Leitao refused to accept the medical skepticism
Leitao's son, Drew, was just 2 years old when Leitao noticed an odd sore on
his lip that would not heal.
"He very simply said 'bugs,' and he pointed to his lips," said Leitao.
Leitao never expected to find herself at the center of a medical storm. But
when her son complained about the strange sore, the biologist, who once ran
the electron microscope at Massachusetts General Hospital in Boston, did
what any scientist would do. She took a closer look. "What I saw were
bundles of fibers, balls of fibers," Leitao says. "There was red and blue."
Even stranger, they glowed under ultraviolet light.
Armed with research, Leitao took her son to a doctor at one of the country's
leading hospitals. He dismissed her tale of fibers and wrote to her
pediatrician, saying that her son needed Vaseline for his lips and that his
mother needed a thorough psychiatric evaluation.
Undaunted, Leitao began poring through medical literature looking for clues.
What she discovered was a 17th-century reference to a strange disease with
"harsh hairs" called "Morgellons. "
She named the strange fibers Morgellons Disease and put the information on a
Web site, Morgellons.org. At the time of her interview in 2006, more than
4,500 people had contacted Leitao, claiming they had Morgellons-type
symptoms. The name stuck, and the disease was featured on the television
But do these fibers grow from inside the body, as Morgellons patients
believe, or do they come from the external environment -- a kind of lint --
as the medical skeptics say?
Searching for an Answer
Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma
checked a Morgellons sample against known fibers in the FBI's national
database. "No, no match at all. So this is some strange stuff," Pogue said
in 2006. He thought the skeptics were wrong. "This isn't lint. This is not a
commercial fiber. It's not."
The lab's director, Mark Boese, said the fibers are "consistent with
something that the body may be producing." He added that, "These fibers
cannot be manmade and do not come from a plant. This could be a byproduct of
a biological organism."
Dill said she looks at pictures of her family and finds them unrecognizable.
"My kids have to see not only their dad but their mom disintegrating, and
that's gotta be really scary."
While they wait for evidence that they hope will convince the medical
community to take them seriously, some Morgellon's sufferers wear pink
bracelets that say, simply, "Fortitude."
Copyright © 2008 ABC News Internet Ventures
Joined: 11 May 2006
|Posted: Fri Jan 18, 2008 11:15 pm Post subject: Fortitude
|Sigh...imagine ID doctors saying it is lint! Are any of them sane? Why would 4500 people go to a specialist because they are collecting lint on their body.
I expect they will find a cure for that before Lyme cause Lymies don't have any 'evidence' of illness...our label of "Insane" will stick until somebody, in a back room, in some homemade lab finds out how to find it 100% of the time...
There is always Hope.
Joined: 01 Aug 2006
|Posted: Sat Jan 19, 2008 4:26 pm Post subject:
|Victim blaming... a longstanding time honoured tradition among those unable to answer a question with the simple words, "I don't know .... but I'll try to find out for you."
Joined: 24 Nov 2006
|Posted: Sun Jan 20, 2008 12:27 am Post subject:
|From what I have read a percentage of people with Lyme disease have Morgellons disease as well. If you go to Lymenet.org I am sure you can find people who have it.
Dr. S in a LLMD in San Francisco and his NP Ms. S. who is well known see and treat a lot of Mogellons. Ms. S. also speaks and writes about the subject.
The sad part about the CDC having Kaiser investigate Morgellons is Kaiser is famous for not wanting to treat Lyme disease so I do not trust kaiser to do a very good investigation.
Oh Kaiser did treat my LD with steroids and Prozac. What they did not do was diagnose it or attempt to. I am not a fan of Kaiser.
I loved it when the media here exposed Kaiser's chaos in their transplant department and luckily the government stepped in and I think shut it down but a bit late because people were dying while awaiting transplants due to the fact that their transplant department was a complete mess and the list they were suppose to keep of people waiting for transplants was a sad joke and people that were suppose to be at the top of the list were never moved up the list.
There was a nurse at the hospital in my county who had Morgellons because I read something on-line about how she tried to get in to see Dr. S.
Last edited by NCalif on Mon Jan 21, 2008 12:06 am; edited 1 time in total
Joined: 24 Nov 2006
|Posted: Sun Jan 20, 2008 12:41 am Post subject: ILADS.org on the subject of Morgellons
Co-infection of Lyme Disease?
Many patients with Morgellons Disease have positive Western Blots for Borrelia burgdorferi, the causative agent of Lyme Disease. It appears that there may be a connection between the two infectious diseases, with one agent possibly predisposing the individual to the second agent. Whether all patients with Morgellons Disease also have Lyme borreliosis remains to be seen. There is some recent information that the fibrous, and other, material associated with skin lesions may be caused by an unknown viral agent or agents.
You can go to the ILADS website to read more about Morgellons.
Joined: 11 May 2006
|Posted: Sun Jan 20, 2008 11:08 am Post subject: Research
|Some of the information that Charolette provided shows that this fibrous material appears to be manufactured by the person's body.
Has anyone read anything about a person with Morgellon's being put on abx to see if it helps them? This must have been tried with some of them right?
Wonder how that worked out? I don't know if I could survive with something like that. I panic if a grasshopper sticks to me. I am irrational. I hate moths too...you should see me in a car with a grasshopper or moth. It is pull over and get out.
I think I would react in a similar fashion to something obscure like fibers coming out of my skin. I might not make it through the ordeal. Expect prozac and ativan would be necessary for me to make it through an afternoon, let alone a whole life.
There is always Hope.
|Posted: Sun Jan 20, 2008 11:23 am Post subject:
|One of the forums I read had a thread recently about a treatment for this condition that seems to work. It was an accidental discovery by one of the sufferers. If you want details email me and I will find the thread for you.
Sherry, when forced to deal with something you could be amazed at what you can and will live with.
Joined: 24 Nov 2006
|Posted: Mon Jan 21, 2008 12:16 am Post subject:
When Miles Lawrence sped to the hospital, he was told he had delusional parasitosis and that the weird spines were "just dirt." But over the next week his symptoms got worse. He scratched at his elbows and noticed more fibers, and little black specks. "It was like they were fighting back," he says.
Eventually, he found his way to a medical professional who does take the idea of Morgellons seriously. Ginger Savely, a nurse practitioner in Austin, Texas, says she has treated 35 patients with symptoms. "Everyone tells the exact same story," she says. "It's just so consistent." Savely prescribes her patients a course of broad-spectrum antibiotics. "If I knew what I was dealing with," she says, "it would be easier to treat." Yet, she says, her patients--including Lawrence--improve within weeks.
Other clinicians have likewise prescribed antibiotics. Dr. Raphael Stricker, a Lyme disease specialist in San Francisco, sees a handful of Morgellons patients--all of whom have tested positive for chronic Lyme disease. He thinks that Borrelia burgdorferi, the bacteria behind Lyme disease, has set his patients up for another, as-yet-unidentified, infection. And Dr. George Schwartz, a Santa Fe, N.M., trauma specialist, treats his patients with antibiotics targeted to Stenotrophomonas maltophilia--a usually harmless waterborne bacterium--and says he's seen them improve in only 48 hours.
Joined: 18 May 2007
|Posted: Tue Jan 22, 2008 1:14 pm Post subject: Morgellans
|This past Sunday there was an article in the Washington Post on Morgellons. One sentence struck me: Of the 80 people diagnosed with Morgellans, 100% were positive for Lyme! Anyway, I think that is what I read. It is an heartrending article but worth while. I had NEVER heard of the disease before--have been off of this site for about a week. Go to www.Washingtonpost.com and then to Figments of the Imagination It reads like a Sci-fi!
Living in Hope,
Joined: 09 Feb 2006
|Posted: Tue Jan 22, 2008 9:10 pm Post subject: Re: Morgellans
|Grace wrote: |
|Figments of the Imagination It reads like a Sci-fi! |
Just in case it become inaccessible (i.e. some times after an article has been posted on-line it will ask that you pay to read it), I have copied it below:
Figments of the Imagination?
Thousands of people around the world say they have a disease that causes mysterious fibers to sprout painfully through the skin, and they've given it a name. The spread of 'Morgellons disease' could be Internet hysteria, or it could be an emerging illness demanding our attention.
By Brigid Schulte
Sunday, January 20, 2008; W10
Sue Laws remembers the night it began. It was October 2004, and she'd been working in the basement home office of her Gaithersburg brick rambler where she helps her husband run their tree business. She was sitting at her computer getting the payroll out, when all of a sudden she felt as if she were being attacked by bees. The itching and stinging on her back was so intense that she screamed for her husband, Tom. He bounded downstairs and lifted her shirt, but he couldn't see anything biting her. She insisted something must be. To prove there was nothing there, he stuck strips of thick packing tape to her back and ripped them off. Then they took the magnifying eyepiece that Tom, an arborist, uses to examine leaves for fungus and blight and peered at the tape. "That's when we saw them. It was covered with these little red fibers," Sue recalls. She'd never seen anything like them. And she had no idea where they came from. "You automatically think clothing. But I wasn't wearing anything red."
Over the next month, Sue's itching intensified. Every night, she says, it felt as if thousands of tiny bugs were crawling under her skin, stinging and biting. She became unable to sleep at night. She left the lights on, because the crawling seemed to be worse in the dark. Thinking it might have been a flea infestation, Sue and Tom pulled up all the carpets in the house. Thinking perhaps it was mold, they tore off the wallpaper. They sanded and stained the bare floors, and then Tom called an exterminator.
Every morning, Sue says, she found little black specks all over her side of the bed. Then she discovered droplets of blood where the specks appeared to be coming out of her skin. "I looked like I had paper cuts all over," she says. She began washing the sheets in ammonia every day. Next, her chest, neck, face, back, arms and legs broke out in painful, red gelatinous lesions that never seemed to heal. To get some relief, she stayed in the shower for hours. She bathed in vinegar and sea sodium chloride and doused her body with baby powder. Nothing really helped.
Her joints began to ache. She lost all her energy and became forgetful. She says she would comb her hair, and tangled clumps of what looked like hair, fibers, dust and skin tissue would fall out. Then, she says, her actual hair began to fall out and her teeth began to rot. She refused to let anyone in the house and stopped going out. She didn't know what she had, but she was afraid she might be contagious.
One day, she says, a pink worm came out of one of her eyeballs and she coughed up a springtail fly. "That's when I thought, 'I'm really going to kill myself,'" she says.
Sue visited a dermatologist, who said he didn't know what was wrong. In time, Sue, 51, came across a condition on the Internet that sounded exactly like her own, and joined 11,036 others from the United States and around the world who, as of earlier this month, had registered on a Web site as sufferers of what they say is a strange new debilitating illness. Some call it the "fiber disease," but most refer to it as Morgellons, a name taken from a similar condition of children wasting away with "harsh hairs" described in the 17th century. A frustrated mother, Mary Leitao, then living in South Carolina, happened upon the description in an old medical history book in 2002 after doctors didn't believe her when she told them that her son had fibers growing out of his lip.
The catalogue of symptoms for Morgellons includes crawling, biting and stinging sensations, granules, itching, threads or black speck-like materials on or beneath the skin, skin lesions, fatigue, joint pain and the presence of blue, red, green, clear or white fibers. Other symptoms supposedly include what some sufferers politely refer to as "neurological effects," such as mental confusion, short-term memory loss -- and hallucinations such as, possibly, Sue's descriptions of the pink worm and springtail fly.
Pam Winkler, 42, says she was once the perfect suburban wife in Bel Air, Md., with a large colonial-style home, two beautiful children and a picture-perfect marriage to her childhood sweetheart. She became so delusional with Morgellons, she says, that she twice wound up in the psychiatric ward against her will and was put on antipsychotic medication. (Ironically, pimozide, an antipsychotic medication she was prescribed, also works as an antimicrobial and relieves itching.) For two years, she says, she's been unable to work, to sleep at night or to do much of anything. She says neither her husband, from whom she is getting divorced and who has custody of their children, nor her other family members believe her. She says they tell her that she needs help with cocaine addiction and just wants attention. Winkler says she became hooked on cocaine because she was so fatigued with Morgellons that she couldn't wake up. Now, she takes Provigil, a narcolepsy medication, to stay awake.
At her worst, she was locked up in a state mental hospital in North Carolina with what she describes as lesions covering her body and black fibers and specks coming out her nose. Doctors there said her open sores were self-inflicted, caused by her constant scratching. She recalls crying in misery to her husband. "You know me. I'm a shallow person. I'm vain. Do you think I'm doing this to get attention? If I wanted attention, I wouldn't look this skanky. I'd get boobs."
Many Morgellons sufferers report they have lost their jobs, their homes, their spouses and even had their children taken away because of the disease.
Lalani Duval, a 47-year-old cosmetologist who lives in Fort Washington, hasn't let her grandchildren near her for more than a year since her incessant itching started. She refuses to visit her mother for fear she'll give her and the rest of the family whatever she has. Her relatives bring her plates of food after holiday meals. "I've picked up a gun three times and put it to my head thinking I can't take it anymore," she says. "This stuff is coming out of my eyes. I vacuum my bed six times a night. This is a living hell."
Whatever it is -- and most doctors believe it's purely delusional -- Morgellons has become a grass-roots Web phenomenon. Google it, and nearly 162,000 references show up, many of them chock-full of vivid color photographs of what people claim are strange, colorful fibers growing under their skin. Several other sufferers have taken graphic videos of themselves poking with tweezers at what appear to be fiber-entangled lesions and then posted them on YouTube. Long online discussions ramble on about the latest conspiracy theories that cause the disease -- poisonous chemicals produced by the government and spread by jet contrails, so-called chem trails; aliens; artificially intelligent nanotechnology; genetic engineering; or a government bioweapon gone awry. Others debate the latest expensive cure-alls -- antibiotics, antifungal creams, vitamin supplements, liquid grey, food-grade diatomaceous earth, deworming medication meant for cattle.
But look on the official American Academy of Dermatology Web site, and Morgellons isn't there. The skin afflictions starting with M jump from "Molluscum contagiosum" to "Mucocutaneous candidiasis." Ditto on the Infectious Diseases Society of America. A search for Morgellons on the National Institutes of Health site returns "no pages found." There is only one study of Morgellons in a peer-reviewed medical journal, the holy grail for Western medicine.
Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio and a member of the American Academy of Dermatology, gives presentations to the medical community debunking Morgellons. It's not that people aren't suffering; they are, he says. It's just that he thinks they have something else, such as scabies or an eczema-like skin condition called prurigo nodularis that's little understood and for which there is no good treatment. And the fibers, he says, are easy to explain.
"People with very itchy skin have scabs, which ooze and tend to pick up threads from the environment, from dogs, cats, air filters, car upholstery, carpet," he says. "Any fibers that I have ever been presented with by one of my patients have always been textile fibers."
Despite the extreme skepticism in mainstream medical circles, the federal government is now taking Morgellons seriously because of pressure from sufferers and the Morgellons Research Foundation, the nonprofit organization that Mary Leitao founded in 2002 and now runs out of her house in Pennsylvania. The group is funded through contributions -- $29,649 in 2006, according to its Web site. And it uses much of the money to promote public awareness and provide small research grants.
In recent years, self-described sufferers clicked on the foundation Web site and sent thousands of form letters to members of Congress. More than 40 members from both parties, including presidential candidates Sens. Hillary Rodham Clinton, Barack Obama and John McCain, leaned on the Centers for Disease Control and Prevention, the nation's public health watchdog, to look into the disease. Sen. Barbara Boxer wrote seven times.
As a result, the CDC has budgeted nearly $1 million in the next two years for Morgellons research and is undertaking the first major epidemiological study of what it is calling an "unexplained dermopathy." Sen. Tom Harkin inserted language in a Labor Health and Human Services bill, later vetoed by President Bush, urging the CDC to continue the Morgellons investigation and "as quickly as possible to plan and begin this important research."
The CDC has contracted with Kaiser-Permanente to begin the study early this year in California. It's hoping to send the fibers collected from patients to the Armed Forces Institute of Pathology in Washington for analysis.
"No one is denying or trying to downplay that these people have something going on. It's just what is the something?" says Mark Eberhard, division director for parasitic disease at the CDC and part of a 12-member task force investigating Morgellons. He says he began to hear of similar cases when he was in graduate school 35 years ago. "This is a topic that people in the medical community have not wanted to engage on because it's very complex," he says. "There's not a clear direction forward . . . This is why we need to be very open. I'm a parasitologist, but maybe there's a virus or bacteria. We need to start with a very broad approach."
The task force will include psychiatrists. "Some of this may even be a mental condition," Eberhard says. "That's why we've been suggesting that there has to be not only a physical but mental evaluation as well as part of any study."
Sue had been going to see Praveen Gupta , a family practice physician in Rockville, for regular physicals for 14 years. He would get after her for drinking too much coffee, sometimes as many as 30 cups a day, he noted in his records. (Sue says she has never had more than five cups a day.) And he tried to get her to cut back on her three-pack-a-day smoking habit. He knew her husband and four children and thought they were all rather nice. And he knew she'd had her share of tragedies, including a son who'd been diagnosed with a malignant brain tumor. But nothing prepared him for her call in late November 2004.
He jotted notes in her medical chart: "She says she's coughing up bugs and worms." She complained of lesions all over her neck, chest, arms and legs that wouldn't heal and itching that would not end and worsened at night. She couldn't sleep. She couldn't think straight. And she said she saw fibers -- strange red, blue and black fibers -- coming out of her skin. Alarmed, he made an appointment for her to come see him that December. But when Sue came in, Gupta says, he found nothing.
"Just a generalized rash, which she could have scratched herself. Nothing out of the ordinary," Gupta says. "It was very bizarre. She brought a sample in. It didn't look like worms, that's for sure. It didn't look like any parasites, that's for sure. It looked like it could have been from the carpet. It could have been dog or cat hair, for all I know."
He sent Sue to an infectious disease specialist at Washington Hospital Center in the District. The lab analyzed her samples and found them to be "amorphous fibers and debris." The overall impression: It was all in her head. She was suffering from what doctors call "delusions of parasitosis." And a big part of the diagnosis was the fact that she'd brought in a sample. That's called the "matchbox" or "Ziploc" sign, named for the containers people tend to use to bring in samples of what they say ails them. Doctors disproportionately diagnose middle-aged women with this condition. Leitao says that three times as many women as men have registered on her Web site as Morgellons sufferers. She speculates that males may be less inclined to register.
Once Gupta received Sue's test results, he called her with the news. He told her that what she needed was not antibiotics, but a psychiatrist. "There are people who hurt themselves, and they can't help themselves," Gupta says. "It's not an unusual situation. These people keep going to doctors -- they doctor-shop -- until they find the answer they want. It's a psychiatric condition that's very difficult to treat."
Sue never saw Gupta again.
Instead, she sought out more than eight doctors and specialists, not because she's crazy, she says, but because she was in agony. All she wanted was relief. She gave her physicians permission to discuss her case and records with a reporter. One doctor told her she had athlete's foot. Another said shingles. Another scabies. One treated her with antibiotics used for Lyme disease, which eased her itching a bit. One told her to go to a movie to get her mind off it. Martin Wolfe, a parasitologist at Traveler's Medical Service in downtown Washington, thought Sue was imagining things when she went to see him. She brought in fiber samples, which he believed fit the delusional diagnosis. Wolfe said he did not see any fibers in her lesions. But Sue complained that Wolfe, like the other doctors she sought out, declined to examine her skin with a microscope.
"In my experience, there's no precedent for this sort of thing happening to human beings, so it's hard to imagine that this is something that's real," Wolfe says, referring to the reports of subcutaneous fibers. Still, he mentions a number of diseases now being tracked that medicine didn't recognize initially, including Rift Valley fever, West Nile virus, tularemia and Ebola virus.
"Is it possible this is something new?" he says. "I can't say it's utterly impossible. But in my mind, it's very improbable."
Phuong Trinh, an infectious disease specialist in grey Spring, took the samples Sue brought him in little jars. "They looked like dust balls," he says, "things you would see in the rug or the stuff you'd get from your vacuum cleaner." He checked her for every known parasite but found nothing. He, too, told her she was delusional.
"I was labeled crazy," Sue says. "But I was desperate, and no one was listening to me. I was acting delusional when I saw some of these doctors. I was going out of my mind. It's so horrible and bizarre, who could believe it in the world?"
There are a lot of reasons why skin itches. Search the online Merck Manual, the doctor's bible, for "itch or itching," and more than 500 conditions pop up. According to Wrongdiagnosis.com, a clearinghouse of medical information on the Web culled from existing medical literature, there are 703 conditions that can make the skin itch, including diabetes, anemia and iron deficiency, in addition to common disorders such as allergies, viruses such as chicken pox and insect bites. "Swimmer's itch" is the result of an allergic reaction to the larvae of freshwater snails. New research has found that too much calcium in the blood can make the skin itch and that some dental sealants used for fillings can trigger intense itching. Additionally, the site lists 1,742 medications that can cause itching. Those include legal substances such as aspirin, Advil, penicillin and codeine, as well as illegal ones such as cocaine and heroin. "Coke mites" is what the cocaine-induced itching is commonly called, though there are no actual bugs associated with it. Drug or alcohol withdrawal can also cause intense itching. As can the power of suggestion.
And the skin itself is a virtual hothouse of potential infection. Researchers have found that our skin is host to at least 182 species of bacteria, many previously unknown.
So, would it be outside the realm of possibility that these fibers, rather than being delusions, could be something medicine has not seen before? Western medicine has been guilty of closed-mindedness in the past. There is even a name for it: the Semmelweis Reflex, the immediate dismissal of new scientific information without thought or examination. It was named for a 19th-century Hungarian physician who was roundly vilified by his colleagues when he asserted that the often fatal childbed fever could be wiped out if doctors washed their hands in a chlorine solution. He was right. The same knee-jerk rejection of a new idea was true for the bacteria H. pylori, which doctors, researchers and scientists refused to believe was the source of stomach ulcers until the doctor who'd made the connection swallowed some himself to prove it.
And could some diseases, rather than being all in the head, involve both mind and body? Medical researchers are beginning to study the potential link between schizophrenia, a disease of the mind, and exposure to infection in the womb. At the Mayo Clinic in Rochester, Minn., doctors are beginning to discover how imprecise a diagnosis of "delusions of parasitosis" can be. In the past five years, 175 people have been admitted to the clinic with that diagnosis. After thorough evaluations, however, with doctors taking the time to search for underlying problems, only half of those patients left the clinic with that diagnosis intact. Doctors found a very real cause of the itching in the other half. The Mayo Clinic is the only other organization in mainstream medicine, outside of the CDC, to include information about Morgellons in its list of human illnesses.
Michael Bostwick, an associate professor of psychiatry at Mayo, says he told a gathering of dermatologists not long ago that they should stop running from Morgellons patients. "I got hissed out of the room," he says. "I think the best thing to say is that people are having an experience, and it's not explained. And people look for explanations. Separating the narrative truth, the stories people tell to explain what's going on, from the biological truth seems to be the challenge of this condition . . . The skin and the brain are derived from the same tissue. It seems completely plausible to me that brain and body and skin could all be related."
Robert Bransfield is a New Jersey psychiatrist who studies the connection between infection and mental illness. He is also one of the handful of physicians and researchers who volunteer as unpaid advisers to the Morgellons Research Foundation and who serve on its medical advisory board. "This isn't delusional," Bransfield says. "Delusions are quite variable. So, one person might have a delusion that the FBI is sending out messages to his dentures. Someone else has a delusion that their next-door neighbor is stealing their mail. But the people who have Morgellons all describe it in the same way. It doesn't have the variability you would see in delusions."
And what of mass hysteria? Could Morgellons be, in a very real sense, nothing more than an Internet virus that has taken hold in susceptible minds? "I do see suggestion with the Internet, but it's hard to explain it on that alone," Bransfield says. "You can see the fibers. The fibers can't be mass hysteria. You see people describe this who don't have a computer," he says. "It's puzzling. It's hard to make sense out of it. But it's there. "
Before Sue got sick, friends and family members say she was a high-energy, Type-A person, especially when revved on caffeine. She was the kind of person who, when she wanted to paint the house that day, would paint it, with two coats. Her husband, Tom, says he barely recognized the woman who began spending hours every day sitting on a heating pad in a hard, wooden chair in her kitchen, and spending her nights in the same chair, staring into the darkness.
When she wasn't sitting catatonically in the chair, desperate but unable to sleep, Sue was at the kitchen counter peering at her own open sores through a microscope she had purchased on the Internet or taking digital photographs of anything that came out of her. And when she wasn't doing those things, she was surfing the Web for answers. At one point, she was convinced that she had T. cruzi, a parasite that causes Latin American sleeping sickness. Her dermatologist had told her to contact NIH. Sue says a researcher there gave her information on Morgellons Web sites. She went to the MRF Web site and found that she was experiencing every symptom listed -- fibers, crawling sensations on the skin, brain fog, chronic fatigue, joint pain and more. Now, she believed, she had a diagnosis. What she needed was a cure.
The doctors may have dismissed her symptoms, but, unlike with so many others who say they have Morgellons, Sue's family believed her. When her Dino-Lite microscope broke from overuse, Tom bought her a new, more powerful Accu-Scope for Christmas. He took her to every doctor's appointment, even counseling her to slow down when she spoke because, when she tried to get everything out in the five minutes a doctor allotted her, she sounded nuts.
"Honestly, I didn't know what to think about the fibers," Tom says. "I knew they shouldn't be there. But they weren't coming off any carpet. I'd watch her pull some nasty, knotty thing out of her arm. She'd work at it and work at it and work at it and pull it out. Now, that ain't right.
"To be honest, if I did not know my wife, I would think she's crazy. But I know my wife. I know she's not crazy. If you felt like a bee was stinging you every day for two years, could you take it? I wouldn't be able to. I'd be out in front of the train that goes behind my house every day."
Still, there are some days Tom can't take it. "I'm not a saint," he says. On those days, he goes out and chops wood.
Sue's daughter Tina moved back home in July 2005 to help care for her brother when his brain cancer returned. When Tina walked in the door for the first time, she remembers, Sue was bald and covered in open sores. "She looked like a leper." Tina worried that the stress of Josh's fatal condition had pushed her mother over the edge. "If you look at your skin through a microscope 24 hours a day, you're going to go crazy," Tina says. "But then I took a look. I saw bugs and things that should not be there coming out of her skin. That changed everything." The mainstream medical community, which thinks Sue is delusional, would say that neither Tom nor Tina saw anything, but rather were drawn in by the power of Sue's fantasy. They call it folie Â¿ deux, "madness of two," or Â¿ trois, Â¿ famille, Â¿ plusieurs or whatever number is required to explain the phenomenon.
Family members say they began to find blue and red fibers on Josh's skull, where his brain surgery incision ran. They asked the surgeon about the color of stitches he used. When he said they were black, they became convinced that Josh, too, had Morgellons. Josh broke out in lesions all over his chest and back and was driven to distraction by itching. Sue says the chemotherapy eventually killed Josh's nerve endings, and he could no longer feel the itching. When Josh died in 2006 at age 22, he was covered in fibers and lesions, Sue says. The funeral home called to ask if any special precautions should be taken when handling Josh's body. "Is there anything we should know?" Sue and other family members recall them asking. "We've never seen anything like this."
Randy Wymore, a molecular biologist who studies gene expression in cancer and heart disease at Oklahoma State University, was probably the first scientist to look at what doctors and dermatologists typically discard as bits of fluff and dust. In the spring of 2005, a student in his second year of cardiac pharmacology class asked Wymore a question about muscle fibers. On a Friday, searching the Web for answers, he hit upon some fiber disease and Morgellons sites. "It sounded totally crazy," he says. But, over the weekend, he kept thinking about the fibers. On Monday, he figured it should be easy enough to determine if the fibers really are from textiles, as doctors say, or from the body, as sufferers contend. So he e-mailed some of the people who'd posted photos of their fibers asking for samples to analyze.
He was expecting to get bags filled with dirt, ants, flies or cotton threads. Instead, within 48 hours, he started getting packages from Texas, Washington, Florida, California, Pennsylvania and other states. What he saw was surprising. "Even though they were coming from very different places, they all looked very similar to one another," Wymore says. "The texture and shades -- a cobalt blue, red fibers that are almost a magenta color -- are very, very similar." And they all autofluoresced, or glowed, in certain light. He picked threads out of bluejeans, fuzz from the carpet, even pepper flakes and compared them to the fibers. He became convinced that the fibers were something entirely different.
With a colleague, Rhonda Casey, a pediatrician, and a $4,000 grant from the Morgellons Research Foundation, Wymore got fresh fiber samples from 20 Morgellons patients. He brought them to fiber analysts at the Tulsa Police Department's forensic lab. The red and blue fibers did not match any of some 900 commercially available textiles in its database. They were not modified rayon, nylon, cotton or anything previously catalogued. Then forensic scientists tried to burn one of the fibers, heating it to 700 degrees Fahrenheit, to determine if it matched any of 85,000 known organic compounds. Again, nothing matched. And the heat, which typically vaporizes any organic material, did nothing to the blue fiber. "We were able to reach in with a tweezers and pick it up," Wymore says. So, he is pretty clear about what the fibers aren't. "But I don't have the foggiest idea what they are."
Wymore has since had a falling out with Leitao and other MRF board members over management and funding issues and has started his own foundation at Oklahoma State to raise funds and search for a cure.
Ahmed Kilani, an infectious disease microbiologist who runs Clongen Laboratories in Germantown, also thought he could figure out the Morgellons mystery fairly quickly. In late 2006, out of the blue, he began getting phone calls and e-mails from Morgellons patients. He took pity on them. "They suffer so much," he says. He contacted Leitao at the MRF and started collecting fiber samples. Under the microscope, they looked just like the fuzz from his office carpet. Still, he dressed in a biohazard suit and tested for leishmaniasis, or "Baghdad boil," a nasty disease of lesions transmitted by sand flies. No match. He spent thousands of dollars building assays to test for protozoal infections and fungal diseases. "It was like chasing ghosts," Kilani says. He began thinking the fibers might be the feeding tubes of fungal spores. He amplified the fungal DNA from the fibers, but it didn't match anything published in medical literature. "Unfortunately, this turned out to be more difficult than I thought. I still do not have an answer," says Kilani, who is now part of the MRF scientific advisory board. The MRF has paid $2,000 for lab chemicals for his work.
At about the same time, Leitao, who was trained as a biologist and worked as an electron microscopist; along with Ginger Savely, a nurse practitioner; and Raphael Stricker, a hematologist, published a paper in the American Journal of Clinical Dermatology reporting that 79 out of 80 Morgellons patients they studied also were infected with Borrelia burgdorferi, the tick-borne bacteria that cause Lyme disease. Savely and Stricker, who practice medicine in San Francisco, specialize in treating patients with chronic Lyme disease with high-dose antibiotics -- a controversial condition and treatment that many mainstream doctors discount. In interviews, Savely and Leitao hypothesized that perhaps Lyme disease or other infections weakened the body's immune system, which allowed Morgellons to take hold. In their paper, they theorized that the fibers appeared to be some type of cellulose. And they noted that Morgellons infections seemed to take off after patients had some kind of contact with soil or animal waste products.
That's the only thing that Dona Forehand, 58, can think might have happened to her. She remembers being out in her Lynchburg, Va., home gardening all day in September 2005, getting ready to show her house for the city's Garden Day. That night, she woke up screaming with blisters in a circle on the crown of her head. Over the months, sand-like granules kept falling from her scalp, gaping lesions crisscrossed with a patchwork of fibers opened on the top of her skull, and she itched like mad. She had been prominent in nearly every charity organization in the city, but she dropped out of sight. For more than a year, she did little but try to pick the fibers out of her head. Eight hours a day, she says. Every day. She went to see 15 specialists. They all told her she was nuts and that the sores were self-inflicted. "The story sounds like it's from the 'Twilight Zone,'" Dona says. "I would rather have gone in to see a doctor and, honest to God, have somebody say, 'You have breast cancer.' I'd be like, 'Okay, we know what to do with that.' But to go in with a disease that doctors don't know what it is, don't believe in it, can't explain. There's no reason. There's no cure. I would much rather have had cancer. I know that sounds crazy, but it was like, give me something I can work with here."
Dona's husband, Jimmy, a real estate developer, didn't believe her either, at first. "I thought she was having some hallucinations," he says. "I felt it was something she could control herself." But that wasn't like Dona, he says. Dona is a former Miss Virginia. She's smart, energetic and level-headed. "She lost all her energy. She slept a lot. It just wasn't Dona. It just wasn't the girl that I married."
Then Dona learned about Savely's work from an Internet search last January. "I was told these two were the only doctors on the planet who take Morgellons seriously," she says. It was all she could do to pull herself together and fly out to see them last March. Jimmy went along and finally became a believer. "At first, I still thought if she would stop her scratching, it would heal up and go away," he says. The doctors convinced him otherwise. "'Oh, no,' they said. 'This is a real, real thing.'"
Dona now flies out to California every few months for treatment with cocktails of antibiotics and pays for regular phone appointments with Savely. She says she's feeling well enough to get out occasionally and play golf, though she wears wigs because the heavy antibiotic doses have twice made her lose her hair. "There are people who have committed suicide because of this disease," she says. "I think if I had not found her, I would have."
With their new theory that the fibers could be made of some kind of cellulose, Savely and Stricker, both of whom are on the MRF medical advisory board, contacted Vitaly Citovsky, a plant biologist at the State University of New York at Stony Brook. Stricker suspected that agrobacteria, common bacteria found just about everywhere that cause tumorous crown galls to form in trees, were somehow related to Morgellons because agrobacteria like to bind with cellulose. Citovsky studies agrobacteria and its use in genetically modifying plants. It was his lab that showed that agrobacteria can genetically transform any organism, including human cells, by transferring DNA into it.
Citovsky prefaced his interview for this article with, "I'm a normal scientist." He says he was interested in a basic scientific puzzle. "At the time I became involved, I knew nothing of the controversy that surrounds this thing. I didn't know that half the people were crazy. Ninety percent of the stuff on the Internet is absolute lunacy. Government conspiracies, nanotechnology," Citovsky says. "People e-mail me that they have wasps coming out of their skull." Citovsky hypothesizes that Morgellons, like syphilis and other infections, can act on the central nervous system and brain and cause hallucinations.
For his study, funded with $3,400 from MRF, Citovsky tested the skin of five people who believed they had Morgellons and a control group of five people, including himself, who did not. He found agrobacteria in only the Morgellons samples. Then he studied the fibers. Many of them, he says, appear to be polysaccharides, or long sugar molecules, which could be cellulose. And he found they contain traces of metal, such as aluminum. But, like Stricker, Savely and Wymore, he won't be certain what the fibers are until their DNA is tested, an expensive process that the MRF is unable to fund. "To me, it indicates that there is something there. It's not like someone picked up lint from their dryer. But that's all we have," says Citovsky, now a member of the MRF's scientific advisory board.
William Harvey, 70, who serves as chairman of the MRF board, has taken those theories one step farther. He says he became interested in Morgellons research after successfully battling chronic fatigue syndrome and made it his mission to find cures for such unexplained illnesses.
He wouldn't be specific, explaining that he first wants the results of his research to appear in a top-notch, peer-reviewed journal such as the Lancet. "This may be the story of the century," he says. A semi-retired doctor in Colorado Springs who spent most of his career working in space medicine for the Johnson Space Center, Harvey says he may have found not only why Morgellons patients would both scratch and act strange, but also what could be the "genesis of probably most chronic human illnesses," such as autism, obesity, chronic fatigue and bipolar disorder.
It all boils down to this: mutant worms.
Harvey hypothesizes that a type of nematode, a wormlike parasite that lives in the soil as well as in the guts or lungs of about half the animals on the planet, mutated somewhere in the 1970s in Southeast Asia and jumped from animals to humans. The parasite is easily spread through the fecal-oral route if someone, for example, is out working in the garden, fails to wash his or her hands thoroughly and then eats an orange. Or it gets into the lungs by inhaling sputum or by kissing. The worm then takes up residence in the colon, Harvey theorizes, and the body's immune system holds it in check.
But when the immune system falters, the worms swarm in the body. That's what happens, Harvey hypothesizes, after a human is infected with a strain of bacteria first reported in 1986, Chlamydophila pneumonia. These bacteria like to live in immune cells, Harvey says, and they feast on those cells' energy. With the host's immune system compromised, the mutant nematodes begin reproducing exponentially, Harvey suspects. They burrow a hole in the wall of the colon, then usually travel at night through the bloodstream or the lymphatic system or crawl in hordes between the layers of the skin, like other species of nematodes are known to do, to the parts of the body with the most blood flow: the face, head and nose. There, a cranial nerve leads right into the brain. A pileup of worms could jam blood and oxygen flow to the brain, Harvey says. "That may explain the psychological symptoms," including the hallucinations, he says.
It may explain why Pam Winkler took herself to the emergency room recently. She said that a huge bump had appeared on the side of her skull in the middle of the night. By morning, she said, the bump was gone, but she could feel crawling all over her face. She wasn't making it up, she swore. And she put her stepsister, with whom she's been living since she got out of the state hospital, on the phone. "I can see them. They're moving down from her head to her eye," said Karen DeWeese. "They're about one and a half inches long and a half-inch wide. They look like bubbles under the skin." The ER doctor later found nothing.
The fibers, according to Harvey's theory, are really the hard shells, which he calls cuticles, that these worms shed at five stages as they grow from egg to larvae to adult. The red fibers are the males, he says. Blue fibers are female. "Using a 2,000-power microscope, you can see inside them," he says. "They look like little stovepipes to me. I can tell the blue ones are female because there's a kink in the middle for the sexual organs and some kind of pouch. And we have pictures of them laying thousands of eggs."
"If you write this theory, it's probably going to sound like someone's come from the mental institution," Harvey says. "But the fact is that this is a real disease, and it appears to be growing."
Some fellow Morgellons researchers -- many of whom were scheduled to meet at the University of Texas in San Antonio this month -- say Harvey's theory goes too far and that the fibers they've examined are in no way associated with any living organism.
"I have a lot of respect for him," Kilani said, "but his theory is really too far-fetched."
Sue Laws used to love to be outside gardening in the back yard of her Gaithersburg home. She also used to have a number of pet birds. Now, she can't stand to be in the yard. She says she feels as if she's being swarmed by insects. And the birds are long gone, a casualty of the family's move to a smaller house in Gaithersburg
She says she finally found some relief when she went to see James Matthews, a Gaithersburg family doctor. Matthews, who says he himself has Morgellons and offhandedly mentions aliens and conspiracy theories, puts his patients on a strict, experimental regimen of high-dose antibiotics, antiparasitic medication and antifungal cream that can run as much as $1,000 total. They're told to drink colloidal grey, which doctors used as an antibiotic before the 1930s and which the Environmental Protection Agency has approved for use as a disinfectant in hospitals; and they mix diatomaceous earth (made of the hard shells of sea creatures) into their food and take a variety of herbs such as ginkgo biloba, as well as vitamins and home remedies such as cod liver and coconut oils. Sue took the long lists Matthews gave her and didn't ask questions. High doses of colloidal grey can turn the skin permanently blue. Though the grey is legal to sell as a dietary supplement, the Food and Drug Administration maintains it has never been tested to prove any therapeutic value. But Sue was desperate to make the itching stop and says she was ready to try anything. "Forgive me, but I would have eaten dog doo at that point if they'd told me it would make me better."
The treatment is expensive, though Sue's insurance covers most of it. At her sickest, she still paid as much as $400 out of pocket every month for a host of antibiotics, fungicides, antiparasitics and other medications. She says she now pays about $100 a month out of pocket. Matthews, like Savely and Stricker, prefers not to work with insurance companies, and patients often pay out of pocket, sometimes $500 per visit. Matthews, who has since sold his family practice to study Morgellons full time, also receives a portion of the proceeds every time he sells a bottle of NutraSilver brand colloidal grey in his office. The money, he says, is used to further his Morgellons research.
The treatment hasn't cured her, Sue says. But the itching has subsided, and she's able to function. For the first time in years, her lesions have begun to heal, and she's been able to work and leave the house. She visited her daughters in Colorado in September and has gone with Leitao to the Capitol to lobby members of Congress for funding.
Matthews postulates that Morgellons is a coming epidemic. Everyone, he says, has fibers. To prove it, he asked for my hand. He cleaned a ProScope, which magnifies the skin 200 times, with alcohol, and I washed my hand with antibacterial soap. Under the microscope, there in my palm, was what appeared to be a tiny red fiber embedded in the skin. Under the top of my fingernail, I saw a bright blue one. Matthews smiled triumphantly. "You see," he said. "Everyone has Morgellons." Other doctors, told of the fibers, dismissed them, saying Matthews's microscope probably found red blood vessels close to the surface of my skin, or a blue-colored vein. But they weren't sure.
CDC officials have been sent images of fibers. But they decline to hazard a guess on what they could be. "We don't know anything about the patients from whom or the condition under which these were taken," spokesman David Daigle wrote in an e-mail. "They appear to be inanimate fibers. What they actually represent is not clear at this time, and we'd prefer not to speculate further."
These days, Sue is unconcerned about both the presence of the fibers -- she now uses a Shed Ender, a dog comb, to get them out of her hair -- and doctors' skepticism. What matters is that she has her diagnosis and a doctor who finally believes her. She has medications that give her a measure of relief. Still, she sits up half the night in her hard, wooden kitchen chair, afraid that lying down to rest in darkness will encourage whatever is in her to come alive and torment her again. She looks out into the black night and waits for a cure.
Brigid Schulte is a reporter for The Post's Metro section. She can be reached at email@example.com.
Joined: 05 Apr 2006
|Posted: Wed Jan 23, 2008 10:32 am Post subject: Morgellons in the New Scientist magazine last autumn
I don't know of anyone with the disease but I was really interested in it, and here is a recent article which mentions Dr Bill Harvey and other prestigious scientists who are finding it is a real and genuine unknown infection:
Morgellons disease: The itch that won't be scratched
12 September 2007
NewScientist.com news service
Morgellons disease: The itch that won't be scratched
STEVE JACKSON* wants to know what is going on in his body. For years
he has been finding tiny blue, red and black fibres growing in
intensely itchy lesions on his skin. "The fibres are like pliable
plastic and can be several millimetres long," says Jackson, an
officer in the British army. "Under the skin, some are folded in a
zig-zag pattern. These can be as fine as spider silk, yet strong
enough to distend the skin when you pull them, as if you were pulling
on a hair."
Jackson is one of thousands across the US, Europe and Australia who
are reporting similar symptoms. "I've had lesions containing black
fibres all over my arms, legs, ears and face, with itching, crawling
sensations," says Pamela Winkler from Maryland. "It feels like
something is biting you everywhere."
The biting, crawling sensations and itchy fibres make sufferers
suspect that a parasite is involved. Yet anti-parasitic medications
don't seem to have any effect. "I've spent a fortune on
dermatological creams but nothing worked," says Julia Ormerod from
Devon, UK. Ormerod has had her house checked for infestation, hoping
to find the cause of the lesions and the itchy, pepper-like black
specks that she keeps finding on her skin. Nothing was discovered.
Fibres are only part of the problem. Sufferers are also affected by
chronic muscle and joint pain, severe fatigue and cognitive
problems. "I walk into rooms and suddenly forget what I'm doing
there," says Sarah Jones* from Somerset, UK. "My words get jumbled
when I talk." As the condition progresses, paranoia and depression
become common, in some cases leading to suicidal tendencies.
Ask Jackson, Winkler or many others with similar symptoms what is
wrong with them and they will tell you that they have something
called "Morgellons disease" (pronounced with a hard "g"). Yet
mainstream doctors recognise no such condition and say that
Morgellons is just a new and unhelpful name for a well-known
psychiatric illness. Research into the condition, meanwhile,
routinely produces more questions than answers, and now the US
Centres for Disease Control, based in Atlanta, Georgia, has stepped
in to sort out the mess. What is going on?
The Morgellons mystery was sparked back in 2001 when Mary Leitao of
Pittsburgh, Pennsylvania, suspected that her 2-year-old son Drew had
scabies. After treating him with a cream she found tiny bundles of
fibres emerging from his skin. She contacted doctors but felt that
none took her seriously. "Several physicians concluded that the
fibres were coming from either my son's clothes, or my clothes," she
says. After searching for information, she found a monograph by the
17th-century author Thomas Browne describing "the Morgellons", a long-
forgotten illness characterised by black hairs protruding from the
skin. She appropriated the name and set up a non-profit organisation,
the Morgellons Research Foundation (MRF), in the hope of attracting
advice or help from scientists. To her surprise, she began receiving
thousands of emails from people claiming to have the same thing. To
date, more than 10,000 families have registered on the site.
Yet on presenting typical Morgellons symptoms to doctors and
dermatologists, people consistently find themselves being told that
it is all in their heads. Rather than suffering from a mysterious
infection or parasite, doctors say they have a well-documented
psychological disorder called delusional parasitosis (DP).
DP is characterised by an unshakeable belief that sensations of
itching and crawling on or under the skin are caused by parasites
such as lice, fleas or worms - even in the face of incontrovertible
evidence to the contrary. The condition usually occurs in people with
other psychiatric conditions such as bipolar disorder, paranoia or
schizophrenia, and in cocaine and amphetamine abusers.
"I was told that the sensations were being caused by my nervous
system," says Ormerod. "Dermatologists took a small biopsy of my skin
but said they didn't find anything. They just told me to stop
scratching myself and the itching would go away. It didn't." Jones's
appointments with doctors similarly came to nothing. "They sent fibre
samples to a lab for testing. All they would tell me was that nothing
abnormal had been found."
What doesn't help is that Morgellons patients often develop
psychological symptoms such as depression and paranoia - hallmarks of
DP. They also have a tendency to bring in small containers of fibres
to their doctor as evidence of a parasitic infestation. This, too, is
a classic symptom of DP, known as the "matchbox sign". "When you look
at them, the [DP patients'] samples inevitably turn out to be skin,
lint, scabs, or household debris or fibres," says Lynn Kimsey,
director of the Center for Biosystematics at the University of
Most experts have little doubt that Morgellons is actually
DP. "Claiming Morgellons disease is a case of people making a
connection where there isn't one," says Kimsey. "They are advocating
some unknown disease, but these are the same kind of symptoms that we
see with DP sufferers."
And the lesions? Likely to be self-inflicted, says Jennifer Biglow, a
dermatologist at Skin Specialists, a private clinic in Minneapolis,
Minnesota. Many DP patients, says Biglow, are neurotic excoriators,
creating the lesions themselves because of a constant need to pick
and scratch at their skin. "When they pick, they get temporary
emotional relief," Biglow says. The broken skin attracts household
fibres, and exposes bundles of collagen and elastin from under the
skin. To someone with DP, any of these can easily take the appearance
of a parasite.
"To my knowledge there is no evidence presented so far that convinces
me that Morgellons patients are infected with any organism known to
western science or related to anything or any parasite we currently
know," says Noah Craft, a dermatologist at the University of
California, Los Angeles.
Some experts are even concerned that the Morgellons Research
Foundation and its made-up disease are having a negative effect on
public health. "Individuals with DP are very sick psychologically and
badly need help," Biglow says. "When they read about Morgellons
disease they get emotional comfort and temporarily feel better about
themselves." The result, says Biglow, is that many DP cases are
missing out on the treatment that could really help them:
Others worry that they will be inundated with spurious cases. "As
more and more of our patients discover [the MRF website], there will
be an ever greater waste of valuable time and resources on fruitless
research into fibres, fluffs, irrelevant bacteria and innocuous worms
and insects," wrote Caroline Koblenzer of the University of
Pennsylvania in Philadelphia in a stinging commentary in the Journal
of the American Academy of Dermatology (vol 55, p 920).
Mystery solved? Not according to the handful of researchers who
believe the DP explanation for Morgellons leaves too many questions
unanswered. Randy Wymore, a pharmacologist at Oklahoma State
University (OSU) in Tulsa, is one of them. About two years ago,
Wymore chanced upon the MRF and was struck by how many people claimed
to have the fibres. "I thought it would be easy to determine whether
the fibres were real or not, and what they were."
Wymore contacted MRF to say that he would be willing to examine some
samples, but secretly expected none to arrive. "When you ask a DP
patient to show you physical evidence of fibres they commonly make
excuses such as: 'Only someone who has it can see them,' or: 'If I
post them to you they will disappear in the mail.'"
Within days, however, samples were pouring in. What surprised Wymore
was that, under the microscope, fibres from different people looked
remarkably similar to each other and yet seemed to match no common
Wymore asked his colleague Rhonda Casey, a paediatrician, to examine
some patients. Using a dermatoscope - a microscope used for examining
skin - Casey clearly saw fibres. These were not just embedded in
lesions but were also visible under the surface of unbroken skin and
could be removed with tweezers. She observed nothing like them in a
control group comprising both healthy patients and those with other
dermatological conditions. Wymore and Casey are now working on a case
study to submit to a peer-reviewed publication.
They also took samples to the Tulsa police forensic science team. On
first inspection, the forensics experts agreed that the fibres were
not from clothing, carpets, towels or bedding. Using spectroscopy
they were unable to match the fibres to any of the 880 compounds
commonly used in manufacturing commercial fibres. Dye-extracting
solvents released no colouration.
Finally, they tried gas chromatography, gradually heating the fibres
to around 370 °C and recording which compounds vaporised off. Save
for giving off a small amount of carbon dioxide, however, the fibres
remained intact. "Any organic material should normally be vaporised
and the inorganic components reduced to ash by the time you get to
the top temperature," Wymore says. "But all that happened was that
the fibres darkened. We were shocked, and the forensics team were
completely blown away." The team say they will submit their findings
to a journal once they have an idea of what the fibres are, rather
than what they are not.
One researcher who believes he already knows is Ahmed Kilani,
director of Clongen Laboratories, a private research organisation in
Germantown, Maryland. Kilani says that he managed to break down two
fibre samples sent to him by a Morgellons sufferer using protein-
digesting enzymes and extracted DNA from them. When he sequenced the
DNA, he found that it belonged to a fungus. This makes sense, Kilani
says: many fungi embed a root in their host and send out long
filaments called hyphae. "This is what the fibres could be," he says.
Clongen has not charged the patient for its services and now plans to
apply for a government grant to carry on the work.
However, at Stony Brook University, part of the State University of
New York, biochemist Vitaly Citovsky has another idea. He found that
Morgellons lesions contain Agrobacterium, a genus of bacterium that
causes tumours in plants. Control groups test negative. In 2001, when
he knew nothing of Morgellons, Citovsky discovered that
Agrobacterium, which is used commercially to produce genetically
modified plants, is - under laboratory conditions, at least - able to
insert its DNA into human cells. This is the only recorded example of
trans-kingdom DNA transfer (Proceedings of the National Academy of
Sciences, vol 98, p 1871).
Could Agrobacterium be causing a new human disease? "We don't yet
know," Citovsky says. "Agrobacterium could just sit there in a
lesion, like an opportunistic infection. Or it could genetically
transform the host, as it does in nature with plants. The next stage
will be to infect mice with Agrobacterium and see if we can recreate
Meanwhile, Robert Bransfield, associate director of psychiatry at
Riverview Medical Center in Red Bank, New Jersey, has tried treating
Morgellons patients with antibiotics and has seen significant
dermatological and psychiatric improvements. "If it was placebo,
anything you gave them would help. But only certain antibiotics work."
It's not just the identity of the fibres and the possible infectious
agent that is attracting attention. A handful of psychiatrists are
also starting to question the assumption that Morgellons is simply DP
in disguise. "Before the onset of their illness, these patients'
mental status appeared to be quite representative of the general
population," says Bransfield, who has reviewed MRF's database of 3000
patients. "Many are high-functioning professionals. Their symptoms
are not compatible with substance abuse or other recognised causes of
delusions. What confuses it is that in the later stages, some
Morgellons patients do become paranoid and delusional. But it doesn't
start out that way."
There's also the question of Leitao's son. Is it possible for a 2-
year-old to suffer from DP? "Since entering medical school in 1968, I
don't recall seeing a single case I would diagnose as delusional
parasitosis in a child," says Bransfield. Even Biglow is
doubtful. "In my opinion a child of two years of age would be too
young to suffer from DP," she concedes, though she points out that
parents with DP can believe their children are infested.
Bransfield also has a hypothesis for the cause of the mental
symptoms: they are caused by the body's reaction to a real parasite.
The process is triggered when a parasite invades a host and the
host's innate immune system unleashes an inflammatory response,
mediated in part by protein messengers called cytokines. Cytokines
also produce symptoms in the host. "The fever, aches, pains and
fatigue that you feel when you have influenza are not a direct result
of the virus," says Bill Harvey, a doctor based in Colorado who has
seen about 75 patients claiming to have Morgellons. "They are
generated by your cytokines defending you."
In the short term the reaction works fine, but if an infection
persists, the continuing action of cytokines can have a "friendly
fire" effect on the nervous system, resulting in psychological
illness. In some diseases, including hepatitis C and Lyme disease,
the body's reaction to infection is known to produce mental illness.
Could Morgellons be the same?
It's hard to say. Most of the ideas and research have yet to be
formally published, leaving believers and sceptics to slug it out on
websites such as Morgellonswatch.com and Wikipedia. Where Morgellons
does appear in the peer-reviewed literature it is mostly as an
awarness-raising exercise from one side or the other. Last year
Leitao herself, in collaboration with two sympathetic medics,
published a paper describing the condition (American Journal of
Clinical Dermatology, vol 7, p 1).
As the research process grinds into gear, more and more people are
coming forward. Wymore, who recently set up the Center for the
Investigation of Morgellons Disease at OSU, gets more than 70 emails
per day from people asking for help or information. "I can't even
answer my office phone any more - there are too many Morgellons
calls," he says. "One guy drove 1600 kilometres from California just
to ask me to examine his fibres."
"One guy drove 1600 kilometres just to ask me to examine his
fibres"The ever-increasing number of people clamouring for answers,
coupled with requests by doctors for help in dealing with this
condition, has led the US Centers for Disease Control to announce
last month that it will launch a formal investigation of the
condition. If nothing else, this will increase the amount of research
into Morgellons. It may even produce some answers.
Bransfield predicts that the medical establishment will soon come to
view Morgellons as a genuine disease. "Whenever a disease is unknown,
it is often considered delusional. It is only when you have a clear,
solid explanation that people recognise the physical basis to it. You
see this with any emerging disease throughout history."
In the meantime, many sufferers just wait and hope. "I've taken it as
far as I can with doctors," says Jones. "None of them want to know.
They just look at you as if you are off your trolley."
*These names have been changed
Daniel Elkan is a freelance writer based in London
From issue 2621 of New Scientist magazine, 12 September 2007, page 46-
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