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Paul and Karen Marsh say they feel like they’re dying, and nobody can tell them why.

The Tahlequah couple is living with a mysterious condition the federal government has yet to recognize as real.

Thousands nationwide say they have it, but the medical community can’t explain it. Many doctors say the patients are delusional.

But the Marshes are sure the condition is real. It began ruining their lives nearly three years ago with a barrage of unexplained lesions tearing holes in their bodies.

Their brains became foggy, unable to focus on more than one thing. Translucent blue and red fibers started sprouting from the lesions. Parts of their nervous systems started failing. Pins-and-needles sensations, like bugs crawling and biting the skin, kept them awake for days.

At times, Paul Marsh looks at his wife and wonders who she is and what Morgellons disease - the skin affliction thought to be responsible for their symptoms - has done to her.

“This basically threw a hand bomb in our life and destroyed about every nature of it,” Paul Marsh said. “Our financial nature, our emotional nature, any kind of relationships - shot.

“Then you have to deal with people who won’t believe you. That’s just a slap in the face.”

Hope is coming from a pharmacologist at Oklahoma State University, Dr. Randy Wymore, who has dedicated his professional life to researching Morgellons.

Wymore says he has proof Morgellons is real, and unlike any disease he has seen.

In late 2003, Karen Marsh immediately knew something was wrong with her. It felt like a bad flu on some days. On others, bronchitis or a respiratory infection. Nothing unusual until December, when she woke up with the massive lesion on her face.

Soon, dozens more erupted all over her body. At least 30 lesions covered her face at one point and didn’t go away for months.

“One day I was driving and I wiped (a lesion) with my hand and it went right down to the bone,” she said.

She pulled over and watched the lesion expand on her skin. She was frightened. Morgellons disease wasn’t even in her vocabulary yet.

“We knew it was something that I kept saying was not of God’s earth or nature,” she said.

Paul Marsh watched his wife’s condition deteriorate for the next two months. He kept note of her symptoms and didn’t experience any himself - until February, when he came home, took off his socks and found his first lesion.

“Blood started pouring out of my leg. I saw what looked like little red points on my sock,” he said. “It bled as if I had stuck it with a knife.”

His first Morgellons lesion didn’t heal for more than six months.

The fatigue started next and continues to worsen.

The Marshes said Morgellons cost them their jobs and life savings within six months. They went from making a combined income just under six figures to below poverty level.

A life-altering disease
While the bizarre nature of fibers sprouting from unhealing lesions is hard to ignore, Wymore and Morgellons sufferers say the scariest part is the unexplained nervous system breakdowns.

“These are far and away the most life-altering of the symptoms,” Wymore said.

Foggy thinking, memory loss, vision problems, pins-and-needles sensations, the fear of bugs crawling across the skin, trouble walking, the shakes - none of the nervous system breakdowns make sense to Wymore.

When Karen Marsh first started showing Morgellons symptoms, her husband said, “it was like a person went down 30 or 40 points in their IQ all of a sudden.”

Some symptoms are similar to Alzheimers or multiple sclerosis, but Wymore said Morgellons doesn’t appear to be closely related to either.

“There’s lots of things that can alter you physically, yet you can still be you,” Wymore said. “When you lose your ability to think and communicate, that’s when the self-identity begins to slip away.”

The cold shoulder
Many reported Morgellons patients struggle to find doctors who believe the disease is real. Karen Marsh said she has talked to dozens of “Morgies” who find doctors with “pass the button” attitudes and no knowledge.

Combined, the Marshes have seen more than 40 doctors. Some give them medication that eases the pain and the symptoms, but doesn’t cure them.

But some doctors turn the Marshes away or show no sympathy to their condition, the couple said.

Karen Marsh has been to more than 30 doctors and visits the emergency room on occasion. Once, an emergency room surgeon referred her to another doctor because he didn’t know what to do with her - more than 30 percent of her skin was covered with lesions.

That doctor didn’t examine her. She said he handed her papers and left for the weekend. Paul Marsh was furious, but realistic: “I understand their point of view. They have no valid, solidified, concrete evidence in front of them.”

Outcasts
The Marshes now feel feared by most.

Doctors. Friends. Even their own families. They think fear accompanies most things people don’t understand or believe.

“Socially, its totally isolated us,” Karen Marsh said. “I haven’t gotten in four years one get-well card.”

Paul Marsh knows some of the fear is justifiable. He remembers how scary his wife was when Morgellons made the first marks on her body.

“I’m her husband and I love her very much, but she had 30 nasty sores on her face as well as the ones on her arm and around her neck,” he said. “If you didn’t know her, you probably wouldn’t want to get near this person.”

The reappearing lesions have left scars lashed across her cheek, chin and shoulders. Her weight loss is drastic. Her eyes are tired. She is frail.

An old friend didn’t recognize her in a grocery store line once. Her church minister deemed her “medically unreliable” to continue serving on certain church boards. Doctors keep their distance. But the Marshes say it’s disconnect from family that affects them the most.

“Most friends and extended family have distanced themselves from us. When this is proven, we’ll be back around. But it really is a true test of who your real friends are.”

She now spends most of her time online, trying to help others cope with Morgellons. She said they are her new friends - her only friends. But she’s OK with that.

See a special video. Karen and Paul Marsh tell their story in their own words. Plus, more information about Morgellons.

Morgellons Research Foundation: http://www.morgellons.org/

OSU Morgellons Research: http://www.healthsciences.okstate.edu/morgellons/