Doctors Make Progress With Mysterious Disease
Doctors Make Progress With Mysterious Disease
Tuesday, May 23, 2006 � updated: 4:48 pm PDT May 24, 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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