[CO-CURE] Morgellons: CDC investigates new emerging disease

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CDC looks at mystery lesions

By Joyce Howard Price, THE WASHINGTON TIMES

Washington Times - Washington,DC,USA - July 27, 2006

http://washingtontimes.com/national/20060727-120638-4635r.htm

 

The U.S. Centers for Disease Control and Prevention is investigating reports

of a bizarre condition marked by symptoms such as crawling and biting

sensations all over the skin, painful crusty lesions that won't heal, mental

confusion

and tangled fibers that sprout from open sores.

 

Nearly 5,000 U.S. families think they have one or more members who suffer

from what is called Morgellons disease -- a condition whose symptoms were first

described in France 400 years ago -- although its existence is not recognized

by any public health organization.

 

" We're not disputing the fact that something is going on here and that these

physical conditions are distressing to people, " said CDC spokesman Dan Rutz,

but " we haven't seen anything that suggests an infectious process is going on. "

 

 

Dr. Gregory V. Smith, a Georgia pediatrician who says both he and his wife

have the disease, accuses the CDC of " foot-dragging. "

 

" It's only taken them five years to do this. Meanwhile, I feel Morgellons is

an emerging infectious disease and that my wife and I got it from insect

bites, " he said yesterday in atelephone interview, adding that most

dermatologists

who observe the symptoms think the afflicted have psychiatric or emotional

disorders.

 

" They say you have delusions, " the physician said.

 

In fact, patients with a condition called delusional parasitosis complain of

problems similar to those described by those who think they have Morgellons,

such as crawling sensations and skin infestations.

 

" We don't know if emotional events trigger them " or other factors, such as

environmental exposures, are involved, Mr. Rutz said in a telephone interview.

 

Randy S. Wymore of Oklahoma State University's Center for Health Sciences

said many skeptics think the fibers emanating from lesions on the skin of the

afflicted are merely lint or fuzz picked up from clothing or carpets.

 

But he said he and others who have examined patients and their fibers are

sure they are not from any fabric.

 

" We've had three sets of patients come in, including Dr. Smith, and these

fibers were not only visible from their lesions; they were actually visible from

under their skin. ... This is not fringe research, " Mr. Wymore said.

 

Mary Leitao of Myrtle Beach, S.C., thinks all three of her children have

Morgellons disease. Her youngest son, Drew, now 7, developed it when he was 2,

and

she spent years trying to get his problem diagnosed.

 

" He scratches all night long in his sleep, " she said in an interview.

 

It was Mrs. Leitao who labeled her children's condition as Morgellons disease

after concluding the symptoms they are battling resemble those of the

17th-century Frenchillness.

 

Mrs. Leitao founded the Morgellons Research Foundation, an advocacy group,

and started a Web site ( www.morgellons.org ) for those who think they may have

it, adding that especially large numbers of sufferers seem to be concentrated

in California, Florida and Texas.

 

She wants to find out whether the condition is related to Lyme disease, given

that there is a " high incidence of Lyme disease " among those who think they

have Morgellons, or whether it is linked to chronic fatigue syndrome, a mystery

illness that caused a stir in the 1980s.

 

In April, a Texas man died of an overdose of more than 50 pills, including

sedatives and painkillers. Friends said the man was convinced he had Morgellons

disease and committed suicide because he could not find relief.

 

2006 News World Communications, Inc. All rights reserved.

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MEDICAL MYSTERY: Morgellons: New disease or shared delusion?

CDC agrees to investigate affliction after more than a year of pressure

By Josephine Marcotty

McClatchy Newspapers - Grand Forks Herald - July 26,2006

http://www.grandforks.com

 

MINNEAPOLIS - For a long time Linda Vosylius thought her debilitating

exhaustion was chronic fatigue syndrome. Then about six months ago, her husband

found

a Web site devoted to a new and even scarier skin disease. " And I began to

realize to my complete horror that something a lot worse than chronic fatigue

was happening to me, " she said.

 

Vosylius, 56, of Mound, Minn., is one of thousands of people who believe they

have a terrible disease not recognized by any doctor or public health

organization - Morgellons disease. It has a lot of symptoms, but what makes it

unique

are skin lesions that contain tiny threads or fuzz balls that are black, red

or blue.

 

Now, after a year or more of pressure from people who believe they have it,

the Centers for Disease Control and Prevention has agreed to investigate

Morgellons to determine whether it's a real disease or a shared delusion.

" Either

way, " said Dan Rutz, a CDC spokesman, " it's a public health threat. "

 

Years from now, experts could identify a new virus or immune disorder that

places Morgellons squarely in the medical textbooks. But for now, it has joined

a whole host of other syndromes with no known cause or cure that some experts

say are spread by the media and the Internet. They include chronic fatigue,

Gulf War syndrome, chronic Lyme disease, fibromyalgia and others. The federal

government has spent millions of

dollars researching them, but they remain mysterious and difficult or

impossible to treat.

 

Disagreement

 

" It's an epidemic of diagnoses, not diseases, " and a drain on public health

dollars, said Dr. Edward Shorter, a professor and expert on the history of

psychiatry at the University of Toronto. " It's a phenomenon of modern mass

communications. "

 

And, he added, the reluctance of many to acknowledge that their problems

might be mental rather than physical.

 

On the other hand, say others, there are many things that medicine doesn't

understand, and arguing that such mysterious diseases aren't real usually

doesn't help the people who think they are.

 

" Then, what do you do with these people? " asked Dr. J. Michael Bostwick, a

psychiatrist at the Mayo Clinic in Rochester, Minn. " It doesn't solve the

problem for this person who is impaired by what you are calling not real. "

 

Vosylius is lucky, she said, because her doctors accept her self-diagnosis of

Morgellons. One has given her a prescription for antibiotics to fight any

unknown infectious agent, and her psychiatrist has given her medication to help

with the neurological symptoms. " It wreaks havoc with your brain chemistry, "

she said.

 

According to the Morgellons Research Foundation, whose mission is to research

" an emerging infectious disease, " most who think they have it are told that

they suffer from a psychiatric disorder called delusional parasitosis. Patients

mistakenly believe that they are infested with a skin parasite and often

refuse to accept it when their doctors say they are not.

 

Bostwick said he gets such patients through dermatologists. " I get them

fairly frequently, " he said. " They will not accept dermatologists telling them

that

they don't have a problem the dermatologist can see. "

 

Symptoms

 

Morgellons symptoms include crawling, stinging sensations under the skin, as

well as fiberlike strands and black grains that appear in skin lesions. People

who think they have Morgellons often experience disabling fatigue, mental

decline described as " brain fog, " mood disorders and joint pain, according to

the

foundation and a recent opinion article published in the American Journal of

Clinical Dermatology. The article, which argued for more research into the

condition, is the only paper published on it.

 

Morgellons emerged about four years ago, when a South Carolina mom who says

her three children have the disease was researching their symptoms. She found a

reference to a 1674 medical paper that described a similar condition in a

group of people called Morgellons.  The Morgellons Research Foundation began

accepting registrations from

people with symptoms in 2002, and there are now about 2,000 from around the

world, said Ken Cowles, director of media and public relations for the

foundation.

 

" How can these thousands of people have similar things happening to them and

be delusional? " Cowles asked.

 

Shorter, of the University of Toronto, said people advocating for recognition

of Morgellons as a disease are following the same route as advocates for

chronic fatigue syndrome, a condition described as long-term, disabling fatigue

that emerged in the late 1980s.

 

" There's a whole arm of the CDC that studies the epidemiology of chronic

fatigue and behaves like it has the same scientific status as mumps. It doesn't.

As a disease, it doesn't exist, " he said.

 

Many others, including members of the Chronic Fatigue and Immune Dysfunction

Syndrome Association of America and researchers at the CDC, disagree. In

April, the federal agency published new findings on chronic fatigue from a $2

million study on 227 residents of Wichita, Kan. They concluded that those who

have

the long-term disabling

fatigue might be genetically and neurologically predisposed to handle stress

poorly.

 

Fibromyalgia and Gulf War syndrome also are conditions that have been heavily

researched and still have no identifiable cause. And doctors say they see

patients every day who have symptoms for those and other hard-to-define

conditions. The best approach is to admit that " we don't know what we don't

know, " said

Dr. Don Deye, an internal medicine doctor at the Cambridge Medical Center in

Cambridge, Minn.

 

" It's a mistake to consign these folks to psychiatric issues, and that's the

end, " said Deye, who works with such patients to find treatments that are

effective.

 

After all, illness is something uniquely experienced by an individual, said

Dr. John Dyer, a professor who studies the history of medicine at the

University of Minnesota. And a collection of symptoms becomes a disease not only

when

science finds a clearly identifiable cause, but also when society accepts it as

such, he said.

 

But debates about what is or is not a disease are critical because labeling a

common s of symptoms for a disease has huge implications, ranging from

allocation of research dollars to sick leave.

 

" Do you qualify for sick time, for insurance coverage? " Dyer asked. " Can you

assume the sick role - or do you have to get off your butt and do something? "

 

© 2006 Grand Forks Herald and wire service sources. .

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Morgellons Research Foundation,A nonprofit organization

P.O. Box 16576, Surfside Beach, SC 29587,

http://www.morgellons.org/index.html

 

Centers for Disease Control and Prevention (CDC)

February 14, 2006

 

MORGELLONS DISEASE CASE DEFINITION

http://www.morgellons.org/casedef.html

 

The following case definition of Morgellons disease has been developed by

physicians on the medical advisory board of the Morgellons Research Foundation.

This case definition is a preliminary and evolving document, now updated for

review by the Centers for Disease Control and Prevention (CDC). This document

will be refined as further information becomes available and as members of the

medical advisory board deem necessary.

 

THE FOLLOWING SIX SIGNS OR SYMPTOMS ARE THE BASIS

OF MORGELLON DISEASE

 

1. Skin lesions, both spontaneously appearing and self-generated, with

intense itching. The former may initially appear as " urticarial-like " , or as

" pimple-like " with or without a white center. The latter appear as linear or

" picking " excoriations. Even when not self-

generated, lesions often progress to open wounds that heal abnormally and

usually incompletely. (e.g., heal very slowly with discolored epidermis or seal

over with a thick gelatinous outer layer.)

 

2. Crawling sensations, both within and on the skin surface. Often

conceptualized by the patient as " bugs moving, stinging or biting "

intermittently.

Besides the general dermis, may also involve the scalp, nares, ear canal, and

body

hair or hair follicles. The sensations are at times related to the presence of

easily seen insects, arthropods, and other human and non-human associated

parasites that require serious attention from the observing clinician.

 

3. Fatigue significant enough to interfere with the activities for daily

living.

 

4. Cognitive difficulties, including measurable short term memory and

attention deficit, as well as difficulty processing thoughts correctly.

Described by

patients as " brain fog " .

 

5. Behavioral effects are common in many patients. Many have been or will be

diagnosed as Attention Deficit Disorder, Attention Deficit Hyperactivity

Disorder, Bipolar Disorder, or Obsessive-Compulsive Disorder. A minority do not

show this pattern. Almost all, if previously seen by well-read physicians

without

prolonged observation, will have been labeled as " Delusional Parasitosis " .

Temporal relationship to skin lesion onset is not known.

 

6. " Fibers " are reported in and on skin lesions. They are generally described

by patients as white, but clinicians also report seeing blue, green, red, and

black fibers, that fluoresce when viewed under ultraviolet light (Wood's

lamp). Objects described as " granules " , similar in size and shape to sand

grains,

can occasionally be removed from either broken or intact skin by physicians,

but are commonly reported by patients. Patients report seeing black " specks " or

" dots " on or in their skin, as well as unusual 1-3 mm " fuzzballs " both in

their lesions and on (or falling from) intact skin.

 

OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS

1. Change in visual acuity.

 

2. Numerous neurological findings. A variety of neurological symptoms have

been reported. Some patients have been diagnosed with Amyotrophic Lateral

Sclerosis, Multiple Sclerosis, and other well-known and recognized disorders,

while

othersdisplay significant symptoms not falling into any well-defined

neurological category.

 

3. Gastrointestinal symptoms, which may include dyspepsia, gastroesophageal

reflux, and/or changes in bowel habits often similar to Irritable Bowel

Syndrome.

 

4. Neuropsychiatric symptoms and signs, ranging from mood or personality

changes to diagnosed disorders including Attention Deficit Disorder, Bipolar

Disorder, Obsessive Compulsive Disorder and occasionally frank psychosis.

Temporal

relationship to skin lesion onset is not known 5. Acute changes in skin

texture and pigment. The skin is variously thickened and thinned, with an

irregular

texture and irregularhyperpigmentation pattern. The changes resemble age

associated sun-exposure skin damage, but typicallyappear acutely

 

6. Skin examination often reveals excoriated and/or crusted lesions which, on

examination with lighted magnification, are seen to have inclusions of

variously colored (white, blue, black, or red) fibers. Skin examination may also

reveal multiple hyper-pigmented macules, and an increase of what appears to be

villous hair on arms and face.

 

7. Arthralgias are reported by many patients.

 

8. Associated diagnoses which have been commonly reported in this patient

population include Borreliosis (better known as Lyme Disease), Fibromyalgia, and

Chronic Fatigue Syndrome.

 

OTHER COMMONLY REPORTED OBSERVATIONS

 

1. Most patients will have sought care from multiple medical care providers.

A large number will have been diagnosed with Delusional Parasitosis likely

because of the juxtaposition of unexplained skin lesions and sensations and

psychiatric overlay. Unfortunately, almost none will have received an

appropriate

diagnostic physical examination (particularly a microscopic or biopsy

examination of lesions), but will have been diagnosed by history alone with

grossly

incomplete observation.

 

2. Most of these patients feel abandoned by the traditional medical care

system and have sought alternative care providers or have self medicated,

seriously compounding an already difficult medical situation

 

LABORATORY AND OTHER DIAGNOSTIC EVALUATION:

To date, there have been no formal laboratory or imaging studies done in this

patient group. There are some reasonably consistent clinical findings,

however, that need further examination, in controlled studies, to be

corroborated or

refuted.

 

REVIEWED BY: William T. Harvey, MD, MPH, Michael Ledtke, MD, Ginger

Savely, RN, FNP-C, Raphael B. Stricker, MD, Gregory V. Smith, MD,

FAAP, Medical Advisory Board, Morgellons Research Foundation

© 2006 Morgellons Research Foundation

 

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