I appreciate your taking this information and hope you find it informative. It is my purpose to inform you of what I think is a rapidly emerging infectious disease. I have seen patients with this disease in my practice. Whether or not you know it, you do as well.
One major organ system affected by this disease is the skin. Patients report itching, stinging, and biting sensations. Most report a ‘skin crawling’ sensation. Patients usually have severe excoriations from continued scratching. Many have large open sores. As a pediatrician, scabies would be high on my differential diagnosis list, but many other disorders might also be considered.
What makes this so different is that many patients have also noticed other skin symptoms and changes in their skin and hair. Some of the descriptions are quite bizarre and unlike anything I had ever been taught or observed. Frankly, the descriptions are so far from anything most of us think of as typical or even possible that credibility is quickly strained.
Many patients report they have seen ‘fibers’ come out of their skin. They report seeing these odd fibers in their home and cars and report they have never seen these before. Even more strange, many report seeing living insects emerge from their skin! Many patients, thinking it the appropriate step, collect specimens and present them to the physician they consult---commonly a dermatologist.
Eighteen months ago, I was not familiar with the psychiatric diagnosis Delusions of Parasitosis. The term ‘match-box’ sign was not familiar to me. That is the term used when patients who believe they are infested with parasites collect skin specimens in a container (in the past, this was most commonly an empty matchbox) to show their doctor. This sign is supposedly pathognomic of Ekbom Syndrome, now generally known as Delusions of Parasitosis or DOP.
The dermatology literature very clearly states that DOP is a diagnosis of EXCLUSION. Yet all too many patients have been immediately labeled as psychiatric cases with no lab studies, no skin biopsies, and often not even a thorough skin examination. Their self collected specimens are usually dismissed and trashed.
Even after patients see a psychiatrist and are pronounced entirely sane, dermatologists across the board have ignored the psychiatry opinion and have started patients on pimozide or other potent psychotropic medications. Some patients have had severe adverse reactions.
More persistent patients report multiple consultations with a variety of specialists. Many feel the physicians did not take them seriously and did not listen to their story. Many have lost faith in our medical care system and have turned to alternative medical care or self treatment. Descriptions of their self treatments are frightening. The treatments have included not just topical application but oral ingestion of insect sprays! Some have been victimized by unscrupulous alternative health care providers. These patients’ stories sparked my interest in Morgellons while also making me ashamed of the treatment given them by members of my profession!
Tragically, it seems the systemic symptoms are not being considered in these patients. This appears to be a multi-system disorder, as a large proportion of patients report neurological, psychiatric, and gastrointestinal symptoms. Almost all experience significant and disabling fatigue, problems with concentration and short term memory as well as other cognitive difficulties. Many experience periods of what is called “brain fog”. Some have been diagnosed with ADHD, Bipolar Disorder, or other psychiatric diagnoses. A significant number have neurologic impairments, including Multiple Sclerosis, ALS, and other neuropathies. Among children with this disease, about half have the diagnosis of ADHD. 10% carry the diagnosis of autism.
The personal medical history of most patients IS bizarre. The symptoms they describe, as well as their observations, seem totally beyond belief. When they occur on one’s own body, it can cause one to question his sanity. I know. I have had this disease since May, 2004. I have seen things happening to my own body which have stretched the limits of belief. I also developed neurologic symptoms early this year which became severe enough I have been unable to work since May, 2005.
Dermatologists use the term ‘folie a’ deux’ when a family member or associate of the patient develops the symptoms. The term essentially means a delusion shared by two. A similar term is used for 3 affected persons, another if 4 persons are affected, etc. The term has even been used to label those physicians who actually looked and who then agreed the patient had unusual findings!
This supposedly explains the fact that several family members may also have the same symptoms. Personally, that only makes sense for people who know each other well and spend a lot of time together. It does not make sense when unrelated patients, in large numbers, who are scattered geographically all over the United States and in at least 15 other countries, report almost exactly the same symptoms and observations. It also does not make sense that very young children—2 or 3 years old----are delusional when they have these symptoms and say they want the bugs off their skin!
This disease is not recognized by the traditional medical care system. The public health system and the CDC are not investigating, even after numerous contacts have reported concern that this is an emerging infectious illness.
Morgellons is the name we are using although others have called it the ‘fiber disease’, ‘Elliot’s Disease’, and other names. Any of those terms in an Internet search engine will yield a surprising number of hits.
The lack of interest in objective research by the public health system and the CDC has been especially disturbing. The CDC was made aware of concerns about this disease at least 5 years ago. Yet there has been no serious investigation by any part of the public health system. Efforts by The Morgellons Research Foundation as well as numerous individuals to interest the CDC in sponsoring research have not been successful.
If you choose to do your own research, you will find many individuals and groups with an agenda. They believe what they believe and want it proved. Some are convinced there is a government conspiracy and the disease is a result of biologic warfare research which escaped into the environment. There is even the alien invasion group. More credible are those physicians who specialize in Lyme disease and believe Morgellons is associated with or a result of chronic Lyme disease. Until the last year, I had no idea of the controversy surrounding Lyme. It seems there are dramatic differences of opinion about almost every aspect of that disease. Even the current testing recommended by the CDC is questioned.
The New Morgellons Order has only one agenda and no pre-conceived ideas about the cause or treatment of this disease. Our purpose is to get this researched and ultimately find a cure!
As an individual, I am sharing this information only to inform. I believe knowledge of this disease must be distributed to medical professionals. I expect nothing from you and sincerely appreciate the time you have taken to read this and review the information I have given you. I know I become passionate about issues in which I believe. But I do not believe I am delusional and my psychiatrist, who I have seen regularly for almost 20 years for my ADHD, also does not believe I am delusional. He says he has no idea what is causing my symptoms, but believes they are real. My neuropathy is certainly all too real.
Since I developed this disease, I looked at rashes in a new light. I began using a magnifying lens and not just my bare eyes to look at rashes. The number of children in my practice who have skin lesions like mine was frightening.
I am afraid. I have a serious health issue which I believe to be related to Morgellons. I believe many, many people have this disease and may develop systemic symptoms in the future. I think Morgellons is an emerging infectious illness which is already widespread.
I have been shocked at the official position of the CDC---the government agency tasked to protecting this nation from infectious agents. I have thought many times of the scenario concerning AIDS described in the book and TV mini-series titled “And the Band Played On”. Both my father and my wife received blood transfusions in the early 1980’s. At that time the CDC was aware of AIDS and knew the virus was transmitted by blood. My loved ones were lucky and did not receive contaminated blood. Many patients were not so lucky. Their lives were profoundly affected and shortened due to a lack of CDC action. Will you and your family be lucky?
Sincerely and appreciatively,
Gregory V. Smith, MD, FAAP