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Morgellons disease under the microscope
(click image to download entire pdf)
The rest of the neighborhood sleeps as the morning birds begin to tentatively chirp from the shadows of the yard. But you don’t hear them. And though the tentative gray of dawn lights your bathroom window in degrees you’re too distracted to notice.
You’ve been frantically scrubbing at the newly formed lesion on your forehead since the itching drove you from your bed in the middle of the night. You’ve already got two other sores on your torso. Various ointments and creams—whatever you had in the house—and even some industrial solvents are scattered around the sink and in the floor, though nothing has stopped the itching.
You’ve considered waking your husband but don’t want to worry him yet, because—and maybe you’re crazy—it feels like the itching is coming from inside, like something is crawling under your skin and trying to burrow out. As you lean closer to the mirror you notice that strange blue fibers have sprouted from the sores and somehow you suppress the immediate urge to scream so you don’t wake the kids.
Six months later, the sores have spread to your legs. The fibers are sprouting in various colors now and you notice that they fluoresce under a black light. You’re starting to suffer cognitive and neurological breakdown and are no longer able to work. The sores have sprouted on your youngest child, too. And, worst of all, your doctor explains away the fibers as lint and says the itching is due to a form of psychosis.
It has been a year since the media storm surrounding Morgellons disease peaked and died. The news angles were essentially the same: an alarmist anecdotal lede like the one above, usually featuring a Morgellons sufferer in the reporter’s respective area; the story—or at least mention—of Pennsylvania-cum-Surfside Beach, S.C. resident Mary Leitao, a mother of three who discovered and named the affliction and who founded the Morgellons Research Foundation (MRF); the emerging science, some legitimate, some quackery and the medical community’s dismissal of the symptoms as psychosomatic; something about the CDC; the whole thing capped off with a tragic, cliffhanger-like ending: “For now, the only thing they can do is spread awareness and hope for a cure.” Fade out.
By and large, the national press hasn’t yet faded back in. Meanwhile, it has been a watershed year in the Morgellons world. This month the Centers for Disease Control (CDC) released a statement officially recognizing Morgellons as “an unexplained and debilitating condition” and announced plans to begin preliminary research.
In the background, a schism in the MRF led to the formation of a rival foundation called the New Morgellons Order (NMO). Then there is the Nevada group of Morgellons enthusiasts who believe the condition could have nanotechnological roots, not to mention the ever-strengthening presence of Morgellons Watch, a watchdog blog run by a tenacious and tireless California man who is determined to debunk them all.
But against the backdrop of these new developments, the same old scabs remain. And until concrete indisputable evidence can be brought forth from a CDC-sanctioned case study, the debate will rage on: are these people afflicted with a new disease or with a case of Internet spawned mass delusion?
Morgellons’ Roots: Mary Leitao and the MRF
“The first six months was like living in a Stephen King horror film… and I was the star.” -Arlene, California
In the summer of 2001, two-year-old Drew Leitao pointed to an itchy spot on his chin and said, “bugs.” Drew had already been tested for eczema, scabies and other skin disorders but no diagnosis seemed to fit his condition. One evening Drew’s mom, a former biologist, noticed strange fibers that seemed to be emerging from the sore on his chin. For the ensuing months, Mary Leitao says she conducted her own studies on the fibers, hoping to explain them away as synthetic or fabric. But, after she repeatedly sterilized the sore on Drew’s chin and then bandaged it, the fibers would always return, seemingly sprouting from the inside.
One doctor from John Hopkins University suggested that Mary might be suffering from Munchausen’s Syndrome by Proxy, a form of hypochondria which causes sufferers, usually the mother, to project illness (or sometimes purposely induce it) on their children. Undaunted, Leitao continued her research and found no other disease like Drew’s listed in current medical literature. Scouring antiquated medical texts, she came across the text of “A Letter to a Friend” by 17th Century naturalist, Sir Thomas Browne. In the text Browne describes a medical condition he observed in French children called “the morgellons” in which those afflicted would break out with patches of coarse hairs on their backs.
In 2002, Leitao, then living in Pennsylvania, started a Web site called the Morgellons Research Foundation and received responses from people across the country, all who claimed to be suffering from an affliction similar to Drew’s. The Web site morphed into a full-fledged non-profit with a board of directors and medical board dedicated to securing funds for continued research. Following the death of her husband in 2004, Leitao moved her family to Surfside Beach, S.C. for a fresh start.
There fundraising for Morgellon’s began in earnest and preliminary research on Morgellons began at Oklahoma State University, Cal State and the State University of New York, according to her site.
The MRF, currently listing its address in Pittsburgh, Pa., has so far documented 64 claims of Morgellons in South Carolina. Approximately 10,000 families have registered with the foundation, believing that they or a family member showed symptoms of Morgellons as defined by the MRF. Of the U.S. families in the MRF registry, 24 percent reside in California with a large cluster of cases in the San Francisco area.
But one California man doesn’t buy it. Michael—who would only give City Paper his first name out of fear of harassment and who prefers to go by his screen name “Margellon”—started Morgellons Watch in April of 2006 because, he says, he had “some problems with their science.”
“Much of the MRF info is very one-sided and pushes a very particular viewpoint,” he says. Margellon worries that if someone is in fact delusional, the MRF gives them a blanket validation.
“The MRF simply says ‘you are not delusional’ without knowing anything about the person,” Margellon charges. “Simply that the person thinks they have Morgellons is enough for the MRF.”
Margellon also worries that the site scares people. “The media coverage (all guided by the MRF) sensationalizes this as some horrific new disease. People get scared that they might have it or catch it. This is all based on no evidence at all and is very irresponsible of both the MRF and the media,” he says.
Still, he believes Mary Leitao means well. “But I think she is simply misguided,” he says, “and perhaps manipulated by those around her.”
Morgellons under the microscope
The medical and scientific advisory boards of the MRF are comprised of over a dozen medical doctors and researchers. Taking into account recurring symptoms described by patients coupled with their own research, the foundation has developed it own case definition of Morgellons.
The opening paragraph of the case definition concedes that the initial three characteristics of Morgellons mirror a psychiatric illness known as Delusions of Parasitosis (DP), which Dr. Noah Scheinfeld, assistant clinical professor in the Dept. of Dermatology at Columbia University, describes as “the patient’s firm belief that he or she has [itching] due to an infestation with insects.” He goes on to say that patients will often bring in “clothing lint, pieces of skin, or other debris contained in plastic wrap, on adhesive tape, or in matchboxes. They typically state that these contain the parasites; however, these collections have no insects or parasites.”
But the MRF maintains that DP was “named decades before today’s laboratory technology and infection/immunity knowledge, driven by HIV, developed.” They believe that, in the case of Morgellons, DP is “a prematurely-assigned label to an organic, rather than purely psychiatric disease.”
The physical symptoms of Morgellons, according to the foundations definition, include: skin lesions, which progress to open wounds that don’t heal completely; movement and biting sensations both on and under the skin; near microscopic granules and “filaments” of varying color which fluoresce under UV light; and cognitive and neurological dysfunction. The definition also cites muscle and joint pain and fatigue similar to that described by people believed to suffer chronic Lyme disease.
“The association with Lyme disease,” the case definition states, “and the apparent response to antibacterial therapy suggest that Morgellons disease may be linked to an undefined infectious process.”
The foundation has so far not developed a concrete theory as to how the condition may be spread, though many believe that it is communicable. They also don’t believe that Morgellons is fatal.
Clongen Laboratories, LLC, owned by MRF board member Ahmed Kilani, Ph.D, believes that Morgellons is caused by a complex fungi, algae or “novel parasite.” They are currently trying to isolate DNA from the fibers and link it to a similar organic structure. Dr. Vitaly Citovsky, Ph.D is also on the board of the MRF.
A researcher with the State University of New York, Citovsky believes that Morgellons could be linked to an Agrobacterium that causes tumors and forms root-like structures within plants. In recent years, forms of Agrobacteria have been used to genetically modify plants by transferring select genes to those plants.
“Morgellons skin fibers appear to contain cellulose,” Citovsky stated in a January 14 statement. “This observation indicates possible involvement of pathogenic Agrobacterium, which is known to produce cellulose fibers at infection sites within host tissues. … If these results are confirmed, it would be the first example of a plant-infecting bacterium playing a role in human disease.”
Dr. Randy Wymore, director of the Center for the Investigation of Morgellons Disease at Oklahoma State University, insists that most of the Morgellons fibers he has studied were first observed under and within healthy, unbroken skin, which would rule out the possibility of lint being stuck to a scab.
In a June 19 position statement, Wymore stated that some of the fibers associated with Morgellons “are not simple textiles of animal, plant or synthetic nature.” In one now infamous experiment reported by Psychology Today, Wymore and a fiber expert from a police forensics crime lab exposed Morgellons fibers to extreme heat to compare their burning point to other organic compounds. The fiber is reported to have sustained temperatures up to 1,400 degrees without burning.
“Efforts to find microorganisms associated with Morgellons are a process of elimination,” Wymore states. “We use molecular biology techniques to try to identify the presence of DNA sequences of candidate organism.”
So far, no research has proven conclusively that the fibers are generated within the body.
Crawling with nanorobots / The schism at MRF
Russell Altman of Beneficial Solutions, LLC distributes a colloidal silver additive for water called NutraSilver. Colloidal silver is believed to have antibiotic properties and was used as a disinfectant before the invention of penicillin. Currently, the U.S. government only considers it a dietary supplement (which can’t by law claim to cure diseases) and in 2001 the FDA issued a warning to an Internet site that promoted colloidal silver as an antibiotic. Still, Altman believes that his silver product will ease the suffering associated with Morgellons.
He also told City Paper that he believes Morgellons is caused by tiny replicating robots which are sprayed down upon the populous from Earths atmosphere.
“There is some very strong information coming from Dr. Hildegard Staninger who is a very famous Industrial Toxicologist that this infection is man-made nanomachines and that they are able to communicate,” he said.
Dr. Hildegarde Staninger, with Integrative Health International, LLC did indeed present a paper to the National Registry of Environmental Professionals in 2006, claiming that a study of Morgellons fibers showed that “the fibers’ outer casing is made up of high density polyethylene fiber (HDPE). The fiber material is used commonly in the manufacture of fiber optics.” He went on to say, “It was further determined that this material is used throughout the bio nanotechnology world as a compound to encapsulate a viral protein envelope which is composed of a viron (1/150th times smaller than a virus) with DNA, RNA, RNAi (mutated RNA) …for specific functions.”
“This is a man-made infection,” Altman insists and then raises the question: But who made it? “Well, consider that it took many billions of dollars to create, you can guess who might be the inventor of this horrible, life-stealing disease,” he says.
When asked what he thinks about the high density of reported cases in California, Texas and Florida, he begins his sales pitch. “Morgellons disease is created by Chemtrails at high altitudes. My product is sold globally to victims in almost every country because the world population has been exposed through high-altitude spraying. Morgellons is in the air and therefore in the water and food chain globally. Yes, there are clusters, but my view is that this is all over the world. You need to know that I have the only effective treatment for Morgellons. We measure our success by how many suicides we prevent every week.”
He then directed me to his associate’s Web site to read testimonials by doctors and lay people. NutraSilver claims to cure everything from acne to Lyme disease and, of course, Morgellons. One testimonial was given by a doctor named James Matthews, M.D. who claimed to have Morgellons only to be cured by NutraSilver. He also disclosed that a “small percentage from the sales of NutraSilver is paid to Advanced Medicine, L.L.C., a new nonprofit company that I direct.”
“It’s a typical nonsense theory,” says Margellon of the nano machines. “Russell Altman, on the other hand, is all business. He’s running a MLM [multi level marketing] scheme for a quack remedy. Jeff Sohler is the man behind morgellonshope.com and nutrasilver.com. Both Web sites are registered through his Internet marketing company Sohlius, Inc.”
And while 2006 saw the Internet blossom with pyramid schemes to fuel the debunkers’ cause, internal personal struggles began to wreak havoc at the MRF.
Dr. Greg Smith, a Gainesville, Ga. pediatrician who served on the MRF medical board, resigned last year citing philosophical differences with Leitao. Former MRF chairman, Charles Holman and Dr. Smith also asked to see the foundation’s financial records for 2004 and claimed that Leitao said she didn’t have them. Shortly thereafter, Smith removed a letter on a medical Web site soliciting donations to the MRF and replaced it with a retraction, stating that he couldn’t solicit donations to the foundation without seeing the financial records.
“It has been the most bizarre situation,” Leitao told the Pittsburgh Post-Gazette at the time. “We’re talking little, tiny chunks of money. I will tell you, the year 2004, there were $318 worth of donations. And $100 of those came from me. I donated a check to my own foundation to jump-start us.”
City Paper obtained the foundation’s IRS 990 form for 2005 which listed total revenue at $17,165. After expenses the foundation’s total assets for 2005 came to $14,664. It was unclear how much was donated to research.
Leitao did not respond to information requests by City Paper. Ken Cowles, the foundation’s director of media and public relations, enthusiastically agreed to a conference call between himself, City Paper, possibly Leitao, and a South Carolina Morgellons sufferer (for alarmist opening paragraph purposes… hence the subpar, 2nd person substitute). Subsequent phone calls and emails from City Paper to set up said interview have so far gone unanswered as of press time.
Margellon, however, was quick to comment and also criticized MRF board members Ginger Savely, RN and Raphael B. Stricker, M.D. who both have backgrounds in the chronic Lyme disease movement.
“The thing I dislike the most is that many members of the MRF have a significant financial stake in popularizing the idea that Morgellons is a distinct disease. Stricker and Savely run a clinic in San Francisco where they treat Morgellons Patients with cocktails of anti-everything drugs and very expensive courses of antibiotics,” he said. “I think they get a lot of business via the MRF.”
Morgellons Watch reported that Savely charges $500 for an initial visit to her clinic and treatment costs run from $1,200 to $12,000 per year, all out of patients’ pockets, as medical insurance doesn’t cover such treatments.
To add insult to injury, Dr. Wymore at Oklahoma State University stepped down as the foundation’s director of research, though he still maintains a working relationship with the group. Meanwhile, former chairman Holman and other board members, Smith included, formed the New Morgellons Order, a group so rabidly pro-financial-disclosure that they post photocopies of the organization’s written checks on their Web site.
The CDC trudges into action
Until recently the CDC seemed reticent to devote any manpower to the Morgellons issue. After a strongly worded letter by U.S. Sen. Dianne Feinstein (D-Calif.) the CDC began to contact people directly to inquire about the condition. In 2006 a CDC task force was formed and in December of that year, U.S. Senators Hillary Rodham Clinton and Charles Schumer (D-N.Y.) signed a single letter to the director of the CDC asking them to expedite their investigation of the issue. The CDCs Division of Parasitic Diseases removed the Delusional Parasitosis page from their Web site in March and many in the Morgellons community believe the removal of the entry has significance to their cause.
David Daigle, a spokesman for the CDC, told City Paper the entry was removed for other reasons.
“The page/link was removed due to a Web management issue rather than Morgellons,” Daigle says. “HHS [Health and Human Services] web governance asked us to remove the page as it did not provide information, rather it linked visitors to another Web site.”
Last month, the CDC released a solicitation notice contracting Kaiser Permanente—a nonprofit managed health care organization based in California that boasted an operating budget of $3.1 billion in 2005 with 37 medical centers across the country tending to its roughly 9 million health plan members—to investigate Morgellons. The CDC chose Kaiser Permenente due to its location in an area with a large number of suspected cases, its large database of patients and what they describe as its qualified staff and facilities.
Some in the Morgellons community have expressed concern over the government’s decision to award a contract to a multi billion dollar health care organization instead of some of the University researchers who have been studying the condition for years. But for now, it’s all they’ve got.
For now the only thing left to do is spread awareness and hope for a cure.
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