|Page 5 of 5 <|
Figments of the Imagination?
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 silver, 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 silver can turn the skin permanently blue. Though the silver 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 silver 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 firstname.lastname@example.org.