CDC to investigate mystery disease (Morgellons)

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Saturday, June 3, 2006

CDC to investigate mystery disease

Sufferers describe ghastly symptoms; but some doctors skeptical of claims

By ERIN ALLDAY

SAN FRANCISCO CHRONICLE

 

The Bay Area might be home to a small cluster of a horrifying and

as-yet-incurable disease that leaves patients with open sores all over their

bodies and strange, unidentifiable objects poking out of their skin.

 

Or not. It's possible that this mystery disease is all in their heads.

 

The disease is called Morgellons, and no one knows what causes it or if it's

even real.

After more than a year of pressure from patients convinced they have

Morgellons, the Centers for Disease Control and Prevention will begin

investigating the ailment for the first time and determine, once and for all,

whether it exists. The CDC started organizing a committee this week for that

purpose.

 

" Not a day passes when I don't talk to somebody who claims to have this, " said

CDC spokesman Dan Rutz. " In the absence of any objective review, people have

jumped to conclusions and found each other on the Internet and formed their own

belief structure. We really need to debunk this if there isn't anything to it or

identify if there is indeed a new, unrecognized disease that needs attention. "

 

No one knows how long Morgellons has been around, but about four years ago a

South Carolina mom who says her three children have the disease was researching

their symptoms and found reference to a 1674 medical study that described a

similar condition, called Morgellons.

 

The disease sounds like a nightmare. In fact, one Web site claims Morgellons

was " invented " recently to help promote a summer horror movie. A search on the

Internet reveals dozens of people who have posted magnified photos of their

symptoms -- usually twisted, thread-like protrusions from the skin and sometimes

hazy images that look like small bugs.

 

It doesn't help convince skeptical doctors that many sufferers complain of

hard-to-believe symptoms. One San Francisco woman describes " tiny green shrimp "

that come from her face, and she said she saw a fly pop out of her right eye.

Even doctors and patients who believe Morgellons exists cringe at such reports.

 

" There really are physical symptoms that occur in people who are not crazy,

although once they have it, it usually makes them pretty crazy, " said San

Francisco Lyme disease specialist Dr. Raphael Stricker, who has seen several

patients with Morgellons symptoms. Stricker and a handful of other doctors

believe Morgellons is somehow related to Lyme disease because so many patients

have already been diagnosed with Lyme disease.

 

Stricker and a colleague, nurse practitioner Ginger Savely, have written the

only paper on the disease, published this year in the American Journal of

Clinical Dermatology. There have been no clinical studies.

 

 

The non-profit Morgellons Research Foundation, founded by the South Carolina

mom, is the only group keeping track of the disease worldwide. It uses a

self-reporting system that encourages people who think they have Morgellons to

register with the foundation Web site. So far, 4,131 households have registered,

about 300 of them in the Bay Area.

 

San Francisco resident Pat Miller, 49, said he went to 11 doctors with his

symptoms after he developed an itchy spot on the back of his head that turned

into a sore and finally a " mound of skin ... with deep black pits. " He also

describes a " crawling sensation. "

 

Dermatologists said the black pits were blackheads. Almost every doctor he saw

diagnosed him with delusional parasitosis -- a psychiatric condition with

symptoms eerily similar to Morgellons, in which sufferers believe they are

infested with parasites.

Eventually, someone referred Miller to Savely, who is considered one of the

few Morgellons experts. She has about 125 patients at her San Francisco

practice.

 

" These people, I feel terrible for them. They're suffering a ghastly disease,

and no one will believe them, no one will help them, and in fact, everyone tells

them they're crazy, " Savely said. " If any one of these people came to me alone,

I might have been skeptical of their stories. But when you have more than 100

people, and their stories are identical, that's impressive. "

 

Few doctors have examined under a microscope samples of the multicolored

filaments or black dots patients describe. Many who have seen the evidence brush

it off as lint or dirt or something else from around the house.

 

Stricker said he has studied samples under a microscope, and they look like

cellulose fibers, which typically would be found in plant material.

 

" When you see it, it's very hard to explain away. These patients have

something that's really not delusional, " Stricker said.

 

Still, plenty of doctors disagree.

 

Many Morgellons symptoms -- the feeling of something crawling beneath the

skin, the open sores, even patients' conviction that they are absolutely

infested with a parasite -- can be attributed to delusional parasitosis, doctors

say. The sores are self-inflicted, caused when people scratch at a spot they

think is infected, they say.

 

" There are a huge number of people out there with (delusional parasitosis),

and most of them are not getting adequate treatment because they have this fixed

belief, " said Dr. Dan Eisen, a University of California-Davis dermatologist.

http://seattlepi.nwsource.com/health/272624_morgellons03.html

 

 

" Respect means listening until everyone has been heard and understood, only

then is there a possibility of " Balance and Harmony " the goal of Indian

Spirituality. " Dave Chief, Grandfather of Red Dog