1st Annual Morgellons Disease Conference Hosted Leading Researchers
They are Searching for the UnCommon Thread
Among the speakers at the conference we (left to right) back row: Ginger Savely, FNP-C, Dr. Randy Wymore of Oklahoma State University, Dr. Raphael Stricker, M.D., Dr. Gregory Smith, M.D., Mark Darah, BS, David Gibbs, Disability Specialist . Front Row: Harriet Bishop of the Texas Lyme Disease Association and Cindy Casey, R.N.
by Harriet Bishop
More than 150 people from Canada, Mexico, and 22 states gathered in Austin Saturday March 29, 2008 to hear startling results of recent research into the newly emerging disease called Morgellon's. Westoak Woods Baptist Church was the setting for the conference which was sponsored by the Charles Holman Foundation. It is the first of its kind in the nation to explore this puzzling disorder in depth. Researchers and clinicians came from both US coasts to disclose their findings to patients.
In Texas approximately 830 persons are believed to be suffering the lesions that fail to heal over weeks and months despite aggressive treatment. The Morgellon's Registry at www.TheNMO.org lists 14,000 families affected nationwide.
Dr. Raphael Stricker of San Francisco announced that DNA from a microbe called Agrobacterium tumefaciens had been found in skin lesions from all seven patients tested. This microorganism is the only known bacterium capable of infecting both plant and animal tissue. It is the organism responsible for the development of gall disease on trees, and the recent findings suggest it may play a significant role in the development of Morgellon's disease in human subjects.
Dr. Stricker hypothesized that the organism might be getting into human beings through the bite of ticks, as ticks have already been shown to harbor more than 25 distinct infectious microorganisms.
Further study is warranted to ascertain the presence of this microbe in ticks.
It is significant that 95% of Morgellon's patients test positive for Lyme disease. Most treating physicians agree that the only effective treatments at this time are antibiotics or herbal protocols geared to eradicating the Lyme disease organism, a spirochete called Borrelia burgdorferi. Treat the Lyme and the Morgellon's gets somewhat better, but a 'cure' has yet to be found. Knowing the identity of the enemy might now help scientists develop more specific treatments.
What the Researchers and Doctors are Saying about Morgellons
“…I now have over 200 patients who fit the criteria for Morgellons disease… As Nurse Practitioners, we must strive to look beyond what we have been taught when confronted with new and puzzling symptoms in patients. Rather than being quick to pigeonhole these patients into a psychiatric diagnosis, we owe it to them to thoroughly investigate the cause of their symptoms.
Morgellons disease is a reminder that we have much to learn by really listening to the patient.”
-Ginger Savely, FNP-C
San Francisco, California
“I am a Board Certified Pediatrician and have practiced in this community for the last 27 years…
..I knew little of the psychiatric disorder called ‘Delusional Parasitosis’…I have learned a tremendous amount since… many patients have been told by numerous physicians that their symptoms are psychiatric and…have been placed on potent drugs to help their ‘psychosis’. Most of these patients have been diagnosed by history alone with no laboratory tests…
Reports that suggest this disorder may progress and cause autoimmune disorders and psychiatric disorders are frightening.
Yet I believe this is only the tip of an iceberg…this disorder is much more common than anyone suspects…during the course of my practice activity, I have seen numerous children…a minimum of 3 children daily in my office with suspicious skin lesions.”
- Gregory V. Smith, MD, Gainesville, Georgia
”It's a very bizarre kind of symptom… because you can see them coming through the skin.
I think it's been trivialized in the past….people are starting to pay more attention because there are more and more patients who seem to have it.
There's a large proportion who are either nurses or teachers. There is always something that we don’t understand and we’re constantly coming up with new things that we don’t really understand yet…
The CDC has no program to test Morgellons …They're being a little disingenuous.”
- Raphael Stricker, MD
San Francisco, California
"There's no question in my mind that it's a real disease."
"If it were not for the fibers, the patients would all be taken seriously. So I think even though the fibers may be a key to helping us diagnose this disease, they have also been a hinderance to it even being accepted as a real disease in the past."
"I would challenge any of these physicians who think that we are just feeding into the delusions to come and examine a group of these patients and see what I've seen."
- Rhonda Casey, DO
Tulsa, Oklahoma
"Morgellons lesions are complex, diffuse, deep and have many types of skin presentations all at the same time. If there is any “delusion” to be found in Morgellons, it is that it looks like the skin organ itself has become delusional and shows a vast array of pathology all at the same time. As a research clinician who invents treatments in many areas of medicine, one should really be careful about simplistic answers in this age of NASCAR medicine--the physician runs from the intake door to the exit door faster than an INDY 500 race car, just to make payroll. Simple answers are often ridiculous answers. And calling Morgellons a delusion with self-inflicted lesions is something that will embarrass medicine in the coming decades—in the same manner in which HIV was trivialized and ignored."
- James Schaller, MD, MAR
Naples / Tampa, Florida
