North Carolina Articles: BACK
Doctors slow to recognize mysterious disease
Victims of Morgellons suffer real symptoms but accused of delusions
Jack Calaway
Charlotte Observer
Charlotte, NC
January 10, 2007
In 1979 Charlotte businessman Marc Iverson fell ill from a mysterious, debilitating ailment. Many doctors didn't believe his symptoms were real, much less the herald of a new disease.
Because symptoms didn't fit any established medical models, physicians couldn't make a definite diagnosis. That was a crushing blow for Iverson, a corporate vice president crippled at age 28.
But he persevered in seeking research, diagnosis and treatment of what became known as Chronic Fatigue and Immune Dysfunction Syndrome. This led to his Charlotte founding of the CFIDS Association of America. Hundreds of thousands of sufferers have since been diagnosed
A few years earlier, Connecticut housewife Polly Murray had complained to health authorities that her family was suffering from an unknown ailment. Persistence got her labeled a hypochondriac. She eventually convinced Yale researchers to investigate, and that led to the identification of the bacteria that had infected her and others with what is now commonly called Lyme disease.
So, will a new malady that has stigmatized a North Carolina woman and thousands of other Americans win similar acceptance in 2007, or will the allegation that they suffer from nothing but delusions cause Morgellons Disease to simmer on the medical back burner?
Debbie Drake -- not her real name -- of Cleveland County hadn't heard of Morgellons when she turned off the bedroom light one night last March and husband Jerry asked why she had blue glitter on her face. She turned the light back on and went to a mirror, but saw nothing unusual. A short while later Debbie felt something biting her legs and face. Pulling back the covers, she expected to find fleas. Instead she saw tiny black specks on her side of the sheets. Strange, she thought, that whatever it was had left Jerry alone. But the biting and crawling sensation continued throughout the night.
Just a case of scabies?
That was the start of an affliction for which her regular physicians can provide no satisfying diagnosis. Her symptoms include severe fatigue, memory loss and especially the intense, itchy lesions in which strange fibers and granules -- auto-fluorescent in some cases -- appear on her skin.When hair started falling out in clumps, she went to a dermatologist who said she had scabies, an allergic reaction to skin mites. It produces itchy rashes when female mites burrow into the skin and lay eggs. Males roam atop the skin, creating a crawling sensation. Since these symptoms matched a few of Debbie's, the doctor prescribed a regimen of topical medications.
But after weeks and weeks of head-to-toe coatings, Debbie's situation had not improved. "I thought I was going to die. The itching was terrible. I reached the point where I hated to go to bed at night." Drake recalled. "I took leave from my job for a short time and was embarrassed to leave the house because of the welts and lesions on my body."
Like Iverson and Murray, she felt she was being treated with skepticism instead of with serious medical attention. "My family doctor didn't come right out and say it, but I got the impression she thought I was experiencing some sort of mental problems," said Drake.
Later she learned that many dermatologists claim the skin fibers and the sensation of parasites crawling under the skin are the effect of a psychosis called "Delusional Parasitosis." Not so, say Drake and other activists.
It appears that the Morgellons equivalent of a Marc Iverson or Polly Murray is biologist Mary Leitao, who in 2002 founded the Morgellons Research Foundation, now based in Maryland. Leitao got involved when fibers appeared on her 2-year-old son. She named the disease after a medical reference to a similar symptom displayed by 17th-century French children called "morgellons."
At least 5 cases in Charlotte
"The number of cases reported to us by persons with the symptoms has doubled in the past year," noted Leitao. "Nearly a quarter of those are from California. Texas and Florida also rank high. So far I know of at least five in Charlotte, and about 70 elsewhere in North Carolina."
Leitao's nonprofit advocacy group has cooperated with medical researchers at Oklahoma State University and funded some of their work. Debbie Drake attended a Morgellons conference there last summer and was relieved to meet folks with similar symptoms.
MRF and online advocacy groups have pressured the Centers for Disease Control and Prevention to escalate a long-delayed examination of Morgellons. That study is scheduled to focus on the California outbreak and will begin the first quarter of this year.
Meanwhile, Debbie Drake holds her head high, and hopes.Observer community columnist Jack Calaway of Charlotte is a Certified Public Accountant. Write him c/o The Observer, P.O. Box 30308, Charlotte, NC 28230-0308, or at CalawayJ@bellsouth.net
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Documentary Filmmaker Discusses his New Film About Lyme as Part of "Lyme Experts" Interview Series
(PRWEB)Asheville, NC
September 8, 2006
An award-winning documentary filmmaker whose current work-in-progress is Under Our Skin, The Untold Story of Lyme Disease, discusses his new film with researchers at the Lyme Disease Research Database (LDRD). A trailer of the film was recently released. The series features Lyme-literate physicians, health practitioners and others speaking about the prevention, diagnoses and treatment of Lyme Disease (LD).
Andy Abrahams Wilson talks about making the film and the reasons he chose Lyme as the subject of a documentary. A friend was sick with what appeared to be a "mystery illness," says Wilson, and doctors were unable to give her a diagnosis. "Her symptoms were very bizarre. She was having neurological problems."
LDRD listeners learn about the latest in cutting edge information about Lyme directly from experts literate in the disease. The LDRD interview series is available in audio on the site, and transcriptions of the interviews are provided also. Viewers of the powerful new trailer of the film Under Our Skin, The Untold Story of Lyme Disease, may recognize their own stories in one of the hundred-plus stories told by the sufferers themselves.
Wilson is one many professionals interested in finding out why LD, which is an epidemic in the U.S., is largely being ignored by the medical community. His company, Open Eye Pictures, interviewed hundreds of Lyme sufferers in preparation for the documentary. He says their stories all share a common theme of misdiagnoses.
"I was shocked to find that no documentary has been made about Lyme disease, at least one that is capable of reaching a national audience," said Wilson, who is currently seeking funding that will enable Open Eye Pictures to complete the film. Read the full Interview here- http://www.lyme-disease-research-database.com/Lyme_disease_documentary.html
The LDRD interview series seeks to represent experts that span a broad range of medical perspectives, from pharmaceutical to alternative therapies. In other interviews, doctors describe their efforts to educate more physicians about the prevalence of Lyme disease. The LDRD interview series aims to inform Lyme sufferers and others about the latest discoveries about Lyme disease, including symptoms, diagnoses and treatment.
For additional information on the Lyme Disease Research Database, visit http://www.lyme-disease-research-database.com/lyme_disease.html
Access to the cutting edge news from experts on Lyme disease is available immediately.About LDRD (lyme-disease-research-database.com): http://www.lyme-disease-research-database.com
Private health and wellness advocates have been gathering information on conventional and integrative approaches to heal from Lyme disease since 2005.
Suzanne Arthur
828-398-4335
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© 2006 The National Lyme Disease Memorial Park Project
