Doctors Make Progress With Mysterious Disease

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Doctors Make Progress With Mysterious Disease

 

POSTED: 7:26 pm PDT May 23, 2006

UPDATED: 11:56 pm PDT May 23, 2006

 

OAKLAND -- A horrifying and fascinating disease is affecting thousands

of people in the Bay Area, along the Gulf Coast and in Florida. Though

some doctors have claimed the malady is psychosomatic, other

scientists are making headway unraveling the mystery of Morgellons

Disease.

 

Former Oakland A's pitcher Billy Koch has it. And so do his wife and

their three children. And though they can afford top medical care,

doctors have no answers.

 

It started in Oakland four years ago. Koch saved 44 games and was the

top reliever in the major leagues. His fastball wowed crowds. And then

the strangeness began.

 

" He freaked out. He wanted to ignore it … I wanted to too. But when it

comes to your kids, you gotta stop ignoring it, " said Koch's wife Brandi.

 

She describes their symptoms: " It was the scariest thing I had ever

realized in my entire life. There was matter and black specks coming

out and off of my skin. "

 

Within two years -- at age 29 -- Billy Koch was out of baseball,

partly because of the uncontrollable muscle twitching that went on for

months at a time and often kept up him up all night.

 

The disease is characterized by slow healing skin lesions that often

extrude small, dark filaments, especially after bathing.

 

" That's when it would really just ooze -- literally ooze out of my

skin, " explained Brandi Koch.

 

The couple was at wit's end after numerous doctors not only provided

little in the way of relief, but actually were skeptical about their

health problems: " There's no reasonable explanation for it. I'm not

seeing things. l'm watching it happen. We're pretty sane people… "

lamented Billy.

 

Infectious disease specialist Dr. Neelam Uppal sympathized with the

Kochs' plight: " They've seen several doctors, [and] everybody's told

them they're crazy. It's in their head. They're delusional. "

 

Dr. Uppal gave the Kochs and fifteen other patients a powerful

anti-parasite medicine and antibiotics that helped temporarily. But

the filaments come back.

 

Testing of the filaments brought no results, according to Dr. Uppal:

" I've seen [it]; sent it to the lab. They can't identify it. They'll

say 'They're nothing.' "

 

The reaction of medical professionals has made a difficult situation

even harder for Brandi Koch: " It's not enough that you're suffering

and hurting. It's 'You're an idiot!' and 'You're crazy!' on top of it.

I'm really hurt and sad and scared. "

 

The Kochs may be the most recognizable of more than 3,000 families

nationwide reporting these same unexplained symptoms. There are

curious clusters, in Florida, along the Gulf Coast and in the San

Francisco Bay Area. That's where we begin our investigation into new

clues to this medical mystery.

 

San Francisco physician Rafael Stricker took samples last spring from

Bay Area sufferers. Patients report pustules and filaments that most

doctors dismiss. Dermatologists claimed the filaments were all

delusions, although none had studied them.

 

Oklahoma State University Professor Randy Wymore was the first

scientist to conduct research on this disconcerting disease. He says

it's the biggest mystery he's ever been involved in.

 

The UC Davis trained physiologist is leading a medical team at

Oklahoma State University in Tulsa, researching what is now called

Morgellons Disease.

 

With cooperation from the Centers for Disease Control and Prevention,

Wymore's team is studying Bay Area patients and others from around the

country. His first finding disputes the frequent diagnosis of delusions.

 

" Pathologists and dermatologists and lab reports [said] that these

were textile fibers appearing in the skin of the sufferers. Now that's

just not true, to be perfectly blunt about it, " says Prof. Wymore.

 

Wymore says his tests rule out not only textile fibers, but also

worms, insects, animal material and even human skin and hair. He says

the filaments are not an external contamination.

 

Instead, they are a substance that materializes somehow inside the

body, apparent artifacts of something infectious. More results are

expected soon. And Wymore says skin problems are not the worst symptoms.

 

He says a neurotoxin or microorganism may disturb muscle control and

memory.

 

" The neurological effects are the much more severe, life altering and

much more dangerous of the conditions, " explains Prof. Wymore.

 

This month, Georgia began a statewide Morgellons registry. Prof.

Wymore says he is about to begin a clinical trial and offers this to

sufferers: " We know there's something going on here. You're not

delusional. "

 

Prof. Wymore has just released an open letter to doctors treating

patients with Morgellons symptoms. It asks physicians to take it

seriously, saying these patients are likely suffering from a still

untreatable emerging disease.

 

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