Mom fights for answers on what's wrong with her son

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http://www.post-gazette.com/pg/06204/707970-85.stm

 

 

Mom fights for answers on what's wrong with her son

 

Sunday, July 23, 2006

By Chico Harlan, Pittsburgh Post-Gazette

 

 

 

It is summer 2001, an evening, 9 p.m. A husband sleeps, tired from

work. Two older children go to bed. The house on a wooded dead-end

street in the McMurray area of Peters, falls quiet, but for the mother

and youngest son, at least one of whom appears sick.

 

Drew is 2, almost 3. He says " mommy " and " daddy " and " milk, " and

often, when he points to an irritated patch of skin under his lips,

" bugs. " How strange, the mother thinks. She's already taken Drew to

several Pittsburgh dermatologists and pediatricians, but nothing

they've prescribed, for eczema, for atypical scabies, has stopped his

itching. On this night, the mother bathes him, paying careful

attention to his skin.

 

The boy snuggles into his mother's lap, dried off, quiet and

agreeable. Mary Leitao rubs him with the prescribed scabies cream,

making gentle circles with her hands. In the years that follow, the

mother will think often about this moment, cursing it, re-examining it

and pinpointing it as the start of everything. As Ms. Leitao rubs,

something fiber-like emerges from the boy's skin, she'll later say. As

a biologist, she's mesmerized. As a mother, she's horrified.

 

Ms. Leitao collects a sample of the strands from Drew's skin. They

glide right off, like filaments from a dandelion. She places them onto

slides, examining them under an $8 RadioShack microscope. She's looked

thousands of times into microscopes, fancier ones, first as a biology

student at the University of Massachusetts-Boston, and later for five

years as a medical researcher at two Boston hospitals. She's seen

nothing like this before. She shakes her head and thinks, " These

things cannot be coming out of my son's body. "

 

The ambiguity soon rearranges her life. The resulting medical mission

will come to obsess her and challenge her sanity, in large part

because she's suddenly been planted opposite the mainstream medical

community. The symptoms that Ms. Leitao now attributes to some 4,500

people nationwide are, by word of most dermatologists and

psychiatrists, a part of delusional parasitosis, a psychiatric

disorder. Victims complain of similar symptoms: crawling sensations

and skin infestations. Those with delusional parasitosis insist such

problems truly exist, and cycle from physician to physician, seeking

validation, never finding it.

 

But then Mary Leitao sees something sprout from her boy's skin, and

she sets out to find answers.

 

Galvanizing force

 

" Fibers, " she calls them at first. She hopes to find they're merely

sweater strands, or a simple fungus. But after months of studying, she

finds something else, something variably red and black and blue that

fluoresces under the proper light. Her first description: under

magnification, the fibers appear ribbon-like and coenocytic, meaning

without cell walls. Dozens of times, Ms. Leitao tries to prove herself

wrong. People don't sprout fibers, logic tells her. She swabs Drew's

irritations clean, ensuring them to be fiber-free, and covers them

with a sterile, nonfibrous wrap. The fibers return.

 

Ms. Leitao uses a biology lab to continue her studies. She concludes

that the medical system owes her some answers. Her husband, Edward, an

internist with South Allegheny Internal Medicine in Bethel Park, tells

her as much: Rely on medicine, he says. He, too, feels Drew has

something unknown, and what good research doctor can resist a chance

to crack away at an answer?

 

 

A microscopic view of Morgellons fibers isolated from a patient.

Click photo for larger image.

 

 

Ms. Leitao spends hours at home searching the Internet. She arrives at

a message board, a scabies forum, where people nationwide share

stories about crawling sensations and fibers. From the discussion

board participants, Ms. Leitao hears that those symptoms often portend

something far worse: a debilitating cognitive and neurological

breakdown, appearing similar to chronic fatigue syndrome. An Internet

user e-mails Ms. Leitao: If you are seeing these fibers with your son,

you have a big problem.

 

First, Ms. Leitao accepts this notion, and then she fights for it. The

stay-at-home mother, a graduate of Aliquippa High School, galvanizes

an unknown subset of the country, a group united by its claims of

crawling sensations and fibers.

 

Ms. Leitao creates a Web site (Morgellons Research Foundation) devoted

to what she believes is a new disease, which she names Morgellons

after an obscure 17th century French reference to black hairs. It is

now March 29, 2004. She formally establishes the Morgellons Research

Foundation, a nonprofit group headquartered in her home.

 

She's the executive director, meaning she must endure two recurring

messages, both burdensome in their own ways. Those disputing the

disease tell her she's crazy. Those convinced they're suffering from

it tell her she's their last hope.

 

Daily, she spends four or five hours talking on the phone. She

corresponds with a woman in Texas who once poured lighter fluid on her

skin lesions, hoping to set fire to the insects inside her. She

befriends a man in Virginia who'd gained 100 pounds and spent four

years on his sofa, isolated from friends and family. And when a

twentysomething dies of a painkiller overdose, ending his fight with

Morgellons symptoms, Ms. Leitao calls the man's mother and tells her,

" We are fighting a system that's so messed up. "

 

In quieter moments, that self-assuredness threatens to buckle. Ms.

Leitao's foundation inspires no medical uproar, no political support,

no government action, perhaps for good reason.

 

Those registered as Morgellons sufferers swarm medical offices,

reciting stories about the fibers, the fatigue, the joint swelling,

the nights in which itching prevents sleep, the fatigue that drops

them onto the couch for 30 hours straight, the hopelessness that

prompts thoughts of suicide. The implausibility of such frenzied

symptoms begets a common, simpler diagnosis.

 

" They suffer terribly, but it's psychiatric, " said Dr. Dirk Elston, a

dermatologist in the Geisinger Medical System in Danville, Montour

County. " The fact that there's something online to cling to, it's a

difficult obstacle for us. "

 

" The moment you mention psychiatrists, these patients get extremely

angry, " said psychiatrist Alistair Munro, author of " Delusional Disorder. "

 

" They say there's nothing wrong with their brain. They have all kinds

of explanations. "

 

Drew continues to see doctors, Ms. Leitao by his side. The fibers

still sprout. The pair meets with UPMC dermatologist Douglas Kress,

who diagnoses eczema. His prescribed medications fail to help. Ms.

Leitao speaks with pediatrician Dr. Michael Frac, who describes

himself as " pretty conservative, not a left-field-type of person. "

 

The Bethel Park physician knows the medical skepticism about

Morgellons, but he also knows history. He thinks of Polly Murray, who,

decades before, had tried to convince the medical world that she was

sick, not simply hypochondriacal. Her persistence pioneered Lyme disease.

 

" Maybe mainstream medicine has been dismissive of this, too, " Dr. Frac

said. " They haven't given this a fair shake. " He acknowledges that

most physicians lack the research power to find the causality of new

diseases. He refers Ms. Leitao to Dr. Fred Heldrich, a Johns Hopkins

pediatrician known for solving mystery cases.

 

Ms. Leitao continues to work from her home office. She eventually

gathers seven advocates -- nurses and physicians -- into a medical

advisory board, all volunteers, and she lists the supporters on her

Web site.

 

The new voices widen Ms. Leitao's platform: Georgia-based pediatrician

Dr. Greg Smith, who identifies himself as a Morgellons sufferer,

writes to politicians with his story. Texas nurse Ginger Savely treats

some 125 patients, telling them, as she prepares experimental

treatments, " You're signing up as a lab rat. " Dr. William Harvey, a

former medical director of the lab contracted to work for NASA,

observes 70 patients complaining of Morgellons and finds that all

carry a bacteria called Borrelia, which, possibly, tampers with the

entire immune system. He treats patients with antibiotics -- Rocephin

or Zithromax -- and almost always, symptoms subside.

 

But the success, purely anecdotal, never helps Drew. His doctors

refuse to prescribe powerful antibiotics without research that proves

the need for them. On the advice of Dr. Frac, Drew and Ms. Leitao

drive to Baltimore to visit the Hopkins expert, Dr. Heldrich. He forms

his own conclusion about proper treatment of Morgellons.

 

" I found no evidence of [anything suspicious] in Andrew, " Dr. Heldrich

wrote to Dr. Frac after the visit. Then he added: " Ms. Leitao would

benefit from a psychiatric evaluation and support, whether Andrew has

Morgellons disease or not. I hope she will cease to use her son in

further exploring this problem. "

 

Rejection, widowhood

 

Ms. Leitao endures the rejections and then, overnight, she must endure

something more severe. It is July 27, 2004. Her husband, Edward, dies

at 54 of cardiac arrhythmia. Her two older children, Jeremy and

Samantha, both teenagers, now experience Morgellons symptoms, too, she

says. They struggle to concentrate in school and miss dozens of class

days. Her daughter takes ibuprofen every day for joint pain and quits

the swim team. On days they do attend school, they return home and go

straight to bed.

 

 

A family photograph shows Mary Leitao, center, with her children:

Samantha, Drew, and Jeremy.

Click photo for larger image.

 

 

Over time, Ms. Leitao comes to think of herself as a machine

engineered for one objective, denying grief because she can't afford

it. Still, she recognizes the futility of a single-handed mission

against the establishment. She needs help.

 

Dr. Randy Wymore finds her just in time. The Oklahoma State University

assistant professor of pharmacology and physiology stumbles onto Ms.

Leitao's Web site while surfing online. He's a glutton for unknowns.

 

Dr. Wymore, a Unitarian, holds himself to no dogma.

 

" We don't claim to have all the answers, " he said, " but let's try to

help one another on the journey. "

 

So he decides to help Ms. Leitao.

 

In the summer after her husband's death, Ms. Leitao moves her family

to Myrtle Beach, S.C., a new start. At the same time, Dr. Wymore and

his family drive from Tulsa, Okla., to California for a vacation. On

the way, Dr. Wymore collects dozens of fiber samples: From clothing on

Goodwill racks. From hotel drapes. From room corners upswept for 20

years. Though he maintains an open mind, he hypothesizes that

Morgellons fibers come from an outside source, something easily explained.

 

Hundreds of Morgellons fibers arrive at his lab, sent from desperate

patients, sent from nurses and doctors. As Dr. Wymore begins a

comparison, his skepticism erodes. The fibers resemble one another,

and yet they do not resemble hair or waste material or cellulose or

any known textile substance.

 

The fibers, about the size of small eyebrow hairs, are not living

organisms, Dr. Wymore decides. He teams with a Tulsa police department

crime lab to sort through fiber samples, and though the lab owns a

database of more than 800 fibers, these fibers match nothing.

 

By winter, Dr. Wymore asks Ms. Leitao to fly with her three children

to Tulsa. Seven other Morgellons patients will meet there, too, for a

one-day preliminary study. Two OSU physicians, Dr. Rhonda Casey and

Dr. W. Stephen Eddy, examine the Leitao children's skin. Both doctors,

within 45 seconds, encounter fibers lurking beneath unbroken skin. It

is Feb. 23, 2006, the day Dr. Wymore and the doctors he's working with

become certain of Morgellons' existence.

 

He plans the next steps, knowing he must gather funding and allies.

One person will not figure this out, he decides. Dr. Wymore currently

awaits spectroscopy results offering information about the physical

and chemical components of the fibers.

 

" See, the people who don't want to discuss this, they just say, 'We

don't grow red and blue fibers.' To a certain extent, it's a little

bit of that Earth-is-flat mentality, " Dr. Wymore said. " But how many

people are open to self-change? [Morgellons] is almost as difficult to

wrap your mind around as trying to convince someone to change

religious views. Think about it: How often does that work? "

 

Waiting for answers

 

It is June 2006. Drew now sleeps with his eyes half-open, a

neurological abnormality that worries Ms. Leitao. Drew can't play

baseball this season, because he sweats profusely in sunshine and

sweat triggers his skin irritations. So instead, Ms. Leitao pitches to

him in the yard.

 

Her older children show pronounced joint swelling. They struggle to

concentrate and receive intermittent homebound instruction, available

to students whose health limits school attendance.

 

Ms. Leitao gathers only a handful of donations for her foundation, and

has yet to receive a grant. An anonymous blogger maintains an

anti-Morgellons Web site rife with personal attacks. Some living with

Morgellons become so discontented, they channel frustration toward the

one person they can associate with the disease.

 

" People say, 'Mary, you need to take a break from this.' But it's not

like I can forget about this now. I have a lot of friends with this,

and they are all incredibly sick. Their neurological problems are

getting worse. I've got to see this through. This is a mission. I

don't know. ... I think it's fear-based behavior. It does appear to be

a bit neurotic, unless you realize what is the driving force. The love

of my children and the fear of an unknown disease.

 

" You know, maybe if enough baseball players get Morgellons, or enough

politicians' children? I know, I sound like a crazy woman. ... But

what does it take? What does it take? "

 

Dan Rutz joins an afternoon conference call with Ms. Leitao and her

team. He's the spokesman for the Centers for Disease Control and

Prevention. Ms. Leitao had written to him months before, asking for an

investigation. " [F]or the past four years, ... I have been waking up

to a horrifying nightmare, " she wrote. Now, Mr. Rutz says, it will

happen. The CDC will form a task force to investigate Morgellons. The

group will need months to assess the disease's existence with

case-control studies and lab work and, perhaps, a scientific fiber

examination.

 

The CDC terms Morgellons a syndrome, fictitious until proven real.

 

But Mr. Rutz, as the next month passes, allows for the possibility.

 

" The fact that people are suffering is real, " he said. " We don't know

if this can be explained under existing paradigms or if it is

something new. But these people deserve more than to be blown off. "

 

It is July 11. A 13-member CDC committee meets for the second time.

The group includes infectious disease experts, parasitic disease

experts, environmental health workers and, indeed, mental health

specialists.

 

Ms. Leitao waits at home, one mile from the beach, knowing a

CDC-issued answer could take months. She and Drew watch SpongeBob.

 

" At the end of the day, " Ms. Leitao said, " the truth will stand alone. "

 

(Chico Harlan can be reached at aharlan or

412-263-1227. )