Conference on strange disease held in Oak Hill area
It sounds like science fiction. People report strange unknown fibers emerging from under their skin in hues of blue, red, white, black, even turquoise. Researchers report that the fibers are made of cellulose, which is not normally found in the human body, and some have even found fibers coated in metal. Some fibers have been observed to move. The fibers are accompanied by an intolerable feeling of something crawling, stinging or biting under the skin, a feeling that gets worse at night. This torment is accompanied by a variety of other symptoms, including skin lesions and "brain fog" and the symptoms are sometimes shared by whole families, and even their pets.
The condition, known as Morgellons Disease, is not officially recognized by the mainstream medical community and sufferers are often diagnosed with other skin illnesses or told that they are suffering from a psychological condition known as delusions of parasitosis – in other words, that it is all in their head.
Although the mainstream medical community does not recognize the illness, on one day out of the year, the often self-diagnosed Morgellons patients and sympathetic medical professionals and allies gather for their international conference. This year, that conference was held April 4th in Southwest Austin at the Westoak Woods Baptist Church.
The conference is sponsored by the Charles E. Holman Foundation, a non-profit that states its mission is to support "research, education, diagnosis and treatment of Morgellons Disease" and included lectures from sympathetic medical professionals and researchers. Charles Holman is the late husband of Cindy Casey RN, a Morgellons patient. He founded the "New Morgellons Order" to raise awareness of the disease after accompanying his wife to a number of doctors' appointments and watching as she was told she was crazy. The foundation was renamed in his honor when he died of a heart attack in 2007 and his wife Casey took over as the executive director.
Cindy Casey's story is like many others. She began experience symptoms of chronic fatigue and occasional skin lesions as far back as 1997. By 2003, the lesions had become so prevalent and excruciating, with the characteristic fibers emerging from her skin and the intense itching, pain and cognitive problems or "brain fog" that she decided to seek treatment.
Like many "Morgies" as Morgellons patients sometimes call themselves, Casey was told by several dermatologists that she suffered from delusional parasitosis, a condition in which the patient hallucinates the sensation of bugs crawling under the skin, often accompanied by skin wounds caused from excessive itching or picking at the skin.
In an intermission during the conference, Casey rolled back her sleeve and lifted her pant leg to reveal arms and legs covered with numerous lesions and discolored whiter skin where she said previous lesions had healed. "They start out as little pimple marks and then they become open wounds, so I have them in all different stages," she said.
Other patients came up, lifting their skirts and pant legs to reveal the same lesions dotting their skin. Some had lesions under white cotton gloves or hidden under handkerchiefs tied over their head.
Of the lesions, Casey said, "They are so painful it's hard to describe – the itching is worse. It's just this insatiable itch that you can't even describe. I've had poison ivy and those things itch bad but this is just, it's just so bad it makes you want to come unglued."
Casey, like many others at the conference, credits Ginger Savely, DNP, a nurse practitioner famous for treating the controversial Morgellons and Chronic Lyme diseases, for finally showing her respect and compassion, and for giving her treatment that she says has reduced the number of lesions and the severity of her pain and itching.
Savely, who has a PHD in nursing, is practically worshipped in Morgellons and Lyme circles. She gave two lectures at the conference, one in which she described case studies of various Morgellons patients she has treated, and another discussing treatment options for the disease. While acute Lyme disease has finally become recognized by the medical community, Chronic Lyme, in which the Lyme symptoms persists after the normal course of antibiotics, is still controversial. Many doctors do not believe it exists.
Not only is Chronic Lyme real, Savely maintains, but it has a strong association with Morgellons. She discovered the connection while treating Chronic Lyme patients in her practice in Austin. She found that approximately 10 percent of her chronic Lyme patients had the fibers, lesions and skin-crawling sensations characteristic of Morgellons. As news of the Morgellons phenomenon spread over the Internet, she started hearing from more patients who came to her for Morgellons treatment. She says overall, about 95 percent of Morgellons patients she has treated are co-infected with Lyme disease.
Savely postulates that Lyme may weaken the immune system, making patients more vulnerable to whatever pathogen causes Morgellons, but she admits she does not know what that pathogen is.
And this is what really upsets many in the mainstream medical community. They criticize her for prescribing heavy doses of a variety of medications for extended periods, outside the normal medical guidelines, when she doesn't even know what she is attacking or which of her treatments will work.
"I've been told that I'm just randomly giving these different treatments to the patients without knowing what the pathogen is and that's really irresponsible. But I think what's irresponsible is ignoring suffering people and not treating them at all," Savely said, and the crowd erupted into applause.
And treat she does. She first works to heal any co-infections such as Lyme disease, and then prescribes simultaneous heavy doses of antibiotics, de-wormers, anti-fungals and various topical creams, trying various medications on a patient until she finds the ones that work, sometimes treating patients with these medications for years at a time.
"Every patient is unique. The more I treat this illness the stupider I get," she said, explaining how she will often find a treatment that works well for a time and then just stops working, and that what works well for one patient, won't necessarily work for another.
Savely doesn't know why the de-wormers are effective, since there are no "worms" found in Morgellons patients but suspects that they are in someway toxic to the pathogen. When she prescribes them, she says patients experience an immediate worsening of lesions and of the crawling, biting and stinging sensations, which she attributes to a "mass-exodus" of the fibers out of the skin. "I do warn patients, you're going to get worse before you get better. That's to be expected, and the majority do get worse before they get better."
But she says most patients do get better, although not all become completely symptom free. One of Savely's success stories stood up, a woman who Savely said was at one time totally debilitated by the condition but has now been symptom-free for three years.
Despite the success stories, some in the medical community feel Savely's treatments are dangerous. She was forced to leave the state of Texas when the medical board put pressure on her sponsoring physician and she could find no other Austin physician to work with. She now practices in San Francisco, California where the laws governing medical treatment are more liberal.
She says she carefully monitors her patients' liver function and blood count over the course of treatment and has seen only on very rare occasions, very minor adverse affects such as a small elevation in liver function, which she says she easily reverses by reducing the medication. "It sounds scary to the pharmacist and they will try to scare you, but I just haven't seen the problems, and people tolerate them (medications) very well," she said.
Although Savely is willing to treat the disease now, everyone agrees that finding the cause of the disease is necessary to find the most effective treatment. The Center for Disease Control (CDC) is currently investigating Morgellons but they have not published any findings.
But other researchers are also looking into the cause. One such researcher who spoke at the conference is Dr. Raphael Stricker, MD, a clinician who, like Savely, treats Chronic Lyme and Morgellons patients in California. Morgellons skeptics dismiss Stricker's research because he was fired from the University of California in 1990 for allegedly suppressing data in a 1985 research paper on AIDS that would have contradicted his hypothesis. But Stricker has consistently denied the charges and Lyme and Morgellons message boards abound with patients posting messages in his defense.
Stricker presented research he conducted along with Savely and Vitaly Citovsky, Ph.D of the State University of New York at Stony Brook, in which they tested lesions from seven Morgellons patients as well as biopsied skin samples from a healthy control population. They found agrobacterium in all seven Morgellons patients and none was found in the control group.
Agrobacterium is a bacteria that infects plants, causing Crown Gall disease in trees, and it is the only known organism to engage in lateral gene transfer among kingdoms, transferring genes from the plant kingdom to the animal kingdom. The bacterium produces copious amounts of cellulose fibers, and Stricker and others have found the fibers found in Morgellons patients to also be made of cellulose, a plant material.
Skeptics point out that cotton is also made of cellulose fibers. But Forensic scientist Ron Pogue of the Tulsa Police Crime Lab in Oklahoma told ABC News that he checked a sample of Morgellons against every known fiber in the FBI database and found no match. The lab's director, Mark Boese, told ABC that the fibers are "consistent with something that the body may be producing." He added, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
Stricker has a theory, but acknowledges a lot of research needs to be conducted to see if his theory is correct. He speculates that agrobacterium, which is found in the soil and also in a high percentage of ticks, is the cause of Morgellons, and that the reason many are co-infected with Lyme is that they may contract Morgellons from the same tick that gave them the Lyme disease.
Furthermore, he notes a very curious finding. Telomerase is an enzyme that ads more DNA to the end of a chromosome after cell division. "Every cell and species has telomerase," said Stricker. "There have been comparative studies of telomerase in different organisms and it's been shown that the telomerase in Lyme and agrobacterium are exactly the same."
He continued, "This is a peculiar coincidence because telomerases are usually completely different among different species and types of bacteria. This suggests when there is co-infection with Borrelia, which causes Lyme disease, and with agrobacterium, the two bacteria can actually help each other by adding pieces of DNA to each other's chromosomes and this could cause variation in both bacteria, that could then lead to changes in what the bacteria are doing in the human body. It's a very interesting possibility that also needs to be examined in further detail."
He added, "My speculation, and it still is speculation, is that Morgellons Disease may represent the first known human illness caused by a plant bacterium. And in fact, when people say they have these fibers attached to the skin that don't come out, that are very adherent, in a way they are kind of turning into plants."
He also noted that his research has found some fibers to have a metallic coating, which could explain why many people have witnessed these fibers moving. He said the metal could become charged with electricity, causing the fibers to move.
"The movement is real," said Casey. "Most everyone you can talk to has seen these things move. It's almost alien. It's like your worst science fiction movie. A lot of us will get together and you can put them on the end of a tweezers and see them moving around almost, like a cobra dance."
But getting together, even if it is just to commiserate about the movement in the fibers, is something that seems to help these patients. Savely said, that in addition to light exercise, nutrition, and her treatment regimen, she urges her patients to seek out human contact.
Because some are afraid Morgellons could be contagious, (there is no evidence to show it is contagious under casual contact) and other are ashamed of their disfiguring lesions, like modern day lepers, many sufferers isolate themselves.
"I think human touch is so important, said Savely. "You can't go with out it. I've had patients come up to me and I give them a hug and they start to cry and they say, 'That's the first time I've touched a human being in five years.' How can you live like that? You know you can't. You can't isolate yourself. You need to be around your family now more than ever."
Look for a follow up on Morgellons in Austin in a future issue of the Gazette.
- Oak Hill Gazette
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julia says: | 2010-06-30 05:36:36 |
| the cure is the mysteria flower?] | ||
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