Thousands claim to have skin ailment; many doctors skeptical

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 federal 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 disbelieving 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 nonprofit 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. California has the most cases, making up 23 percent of the total.

One prominent name associated with the malady is former Oakland A's and Toronto Blue Jays pitcher Billy Koch, who left baseball because of pain and chronic fatigue he blames on Morgellons. Last week, a young man in Texas killed himself with a drug overdose in what authorities believe may have been an attempt to alleviate Morgellons-like symptoms that were making him miserable.

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" and a feeling like something is "trying to grow down into my skin, like a drill or a corkscrew."

Dermatologists said the black pits were just 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.

"None of them once used a microscope. None of them once did any kind of invasive exam," Miller said. "To prove that I wasn't crazy, I had to go into a psychological program. A psychiatrist and several therapists all agreed that I wasn't crazy, that I did have a physical disease, and basically pushed me to pursue the fight, to prove that I wasn't delusional."

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, not all of them from the Bay Area.

"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 UC Davis dermatologist. "It's probably just a group of patients who haven't gotten the appropriate treatment, and they're calling it Morgellons."

The standard treatment for delusional parasitosis is anti-psychotic medication. Stricker and other physicians are treating Morgellons patients with a combination of antibiotics and anti-parasitic and anti-fungal drugs, but they don't alleviate all the symptoms.

Miller agreed to take anti-psychotic medication for a few months, but it didn't help, he said, and a therapist told him to stop taking it. Since he started seeing Savely, he's been taking the antibiotics and anti-parasitic and anti-fungal drugs, and he said his health has improved.

But he's still angry when he thinks of the doctors who brushed off his symptoms and insisted he was delusional without bothering to give him a thorough exam.

"I've been basically ostracized at work. I used to have big boils on top of my head, and I didn't look great," Miller said. "I don't really want an 'I'm sorry' from these doctors -- I just want them to come on board. I want them to stop treating me like I'm crazy."  

Source San Francisco Chronicle