The Morgellons Research Foundation is dedicated to finding the primary cause of an increasingly prevalent skin disease, which mimics scabies and lice.
The majority of individuals reporting symptoms of Morgellons Disease reside in California, Texas, and Florida. Several distinct "cluster" areas of this disease have been noted (in order of cluster density) near Los Angeles, San Francisco, Houston, Dallas, and Austin, Texas.
Physicians treating patients with this disease believe that it involves a novel organism. This organism has been difficult to identify, but appears to infect individuals whose immune systems have been altered by Lyme Disease, also known as Lyme Borreliosis. This foundation is working to identify this novel organism and determine the source of the disturbing crawling, stinging, and biting sensations experienced by people with this disease.
Most individuals with this disease report non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking features of this disease. In addition, many people consistently report finding objects described as black specks, and granules associated with their skin and skin lesions. The granules have also been described as sand or seeds, but are often seen to have fibers emerging from one end. The elongated fibers are often twisted into balls or what appear to be bundles of fibers, as they grow within the skin. Many people refer to these bundles as fiber balls, fuzz balls, or lint balls. The fibers are clearly hyphae-like structures, and yet, due their immense size (150+/- microns wide), they do not fall within the description of known hyphae or pseudohyphae. The fibers are most often white, but are also consistently seen as blue, black, and rarely red. The fibers exhibit a high degree of autofluorescence and are not, repeat not, textile derived.
Additional organisms may be found on the skin of individuals with this disease, but are considered incidental findings related to skin integrity. The only consistencies observed by laboratories affiliated with this foundation, have been the fibers, black specks, and granule-like structures. These consistencies are the main focus of our investigation of the primary cause of Morgellons Disease. However, this foundation remains dedicated to finding clear answers for all individuals who have received a diagnosis of Delusional Parasitosis.
Remarkably, not all people with this disease have overt skin lesions, as some individuals report intact skin. The troubling sensations and accompanying physical structures, are the consistent clues to this bizarre skin disease, which we will refer to as a Borrelia coinfection.
What are the additional symptoms of this disease?
An extremely high percentage of our members report the following: Chronic Fatigue Syndrome (CFS), Fibromyalgia (Myalgic Encephalopathy or ME), "brain fog" or cognitive decline, ADHD, mood disorders (primarily Bipolar Disorder and depression), joint swelling and pain, rapid visual and neurological decline, autoimmune disease, and hair loss. Many of these common additional symptoms appear to be related to inflammation. What is inflammation? Some of the symptoms and physical structures associated with this disease are unusual and may lead physicians to assume that the patient is misinterpreting their situation. Nearly all (95% of) adults with the symptoms of this skin disease have received a diagnosis of DOP or Delusional Parasitosis. What is Delusional Parasitosis?
What is being done about this unknown skin disease?
Twenty physicians in the U.S. are currently treating patients with this baffling skin disease. These physicians are trying to determine the optimal medical management of their patients, while scientists identify the filamentous skin pathogen related to the Borreliosis.
Several hundred people with Morgellons Disease have tested positive for Borrelia burgdorferi (Bb), the bacteria which causes Lyme Disease. The working hypothesis of this foundation is that an infection with Borrelia burgdorferi (Bb) may alter the individual's immune system and allow this unknown organism to become an opportunistic coinfection.
A working hypothesis is subject to change as research continues and facts emerge. Objective scientists form new hypotheses when old ones are no longer supported by current research findings. Good scientific thinking continually evolves and does not stagnate.
Physicians and scientists are beginning to investigate the lesions of people with this disease. The fibers from skin lesions are being studied to determine their origin.
This foundation has received no funding and has done this research based on the kindness of scientists, laboratories, physicians, and individuals concerned about this public health conundrum.
How can these unknown fibers be described?
The unknown fibers associated with skin lesions can be described as coenocytic (aseptate), smooth-walled, branching, filamentous objects. The fibers have been analyzed by FTIR (Fourier Transform Infrared Spectroscopy) and have tentatively been identified as cellulose. Since true fungi are not able to synthesize cellulose, we are currently focused on the Oomycetes class of fungus-like organisms, and filamentous organisms, which have the cellulose synthetase gene.
We are unclear if this unknown organism is an Oomycete, but are intrigued by certain features of this class such as Coenocytic mycelium and cellulose synthesis. Pythium insidiosum is the only Oomycete we are aware of, which has been documented to cause human infections. Again, the structures associated with this unknown skin pathogen, do NOT fit the descriptions of any of the known Oomycetes. The cause of this skin disease remains elusive.
Although we realize the importance of the scientific discoveries which will enable us to understand the disease process, we believe that educating the public about this disease is a critical step in allowing people to understand what is happening to their bodies.
We want people with this disease to know that they are not imagining their symptoms. The symptoms may not be understood, but they are real.
Reprinted to initiate medical discussion.
My Thanks,
Dr. J