Thousands claim to have skin ailment; many doctors skeptical.
Mystery Disease Hits S. Fransisco
Thousands claim to have skin ailment; many doctors skeptical
Erin Allday, Chronicle Staff Writer
Saturday, June 3, 2006
SAN FRANSISCO - 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."
Morgellons
Symptoms
-- Unexplained sores that won't heal
-- Materials protruding from the skin that look like thin, multicolored
threads or black sand
-- Chronic fatigue
-- "Brain fog," including difficulty concentrating and short-term memory
problems
-- Muscle and joint pain
-- Sensation of something crawling beneath the skin
How it often is diagnosed
-- Delusional parasitosis
-- Skin conditions such as scabies, eczema or acne
-- Symptom of Lyme disease
History of Morgellons
1674: A British researcher identifies a mysterious disease that causes a
rash and strange hairs to break out on children. He names the disease
Morgellons.
2002: A South Carolina mom researching her children's strange skin
condition starts calling it Morgellons and creates the Morgellons
Research Foundation.
2005: By December, nearly 2,000 households worldwide have registered on
the Morgellons Research Foundation Web site as living with someone with
symptoms.
2006: In May, the Centers for Disease Control and Prevention decides to
investigate and determine whether Morgellons is a real disease.
Sources: Morgellons Research Foundation, Chronicle research
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