How CFS starts

Most "true CFS" patients describe it exactly this way...

http://www.sacbee.com/101/story/718704.html

After odd illness that baffled doctors, she's battling back By Dorsey Griffith - dgriffith@sacbee.com
Published 12:00 am PST Sunday, February 17, 2008

During the scariest times last fall, Susan Applegate would reach for a children's book.

She didn't know back then whether Amy, her 22-year-old daughter, would ever wake up, or whether she'd emerge from a coma as the same intelligent woman her mother knew.

Each glossy volume had been given to Amy as a Christmas gift many years before. So Susan Applegate hoped that reading aloud the inspirational books about enduring love and overcoming obstacles would touch some part of Amy's psyche.

Maybe it would help lift her out of a coma and away from a mysterious illness that was leading doctors on an arduous hunt for a cause and a cure. What they found, one doctor said, was something "you might see once in your career."

Amy's ordeal began Nov. 14 with what seemed a run-of-the-mill virus and fever. She called in sick to her job as a classroom aide for severely disabled children, planning instead to sleep through the day in the Carmichael home she shared with her father.

But when her mom stopped by to check on her at 10 a.m., Amy was on the floor next to her bed.

"She couldn't move," Susan Applegate said. "I got her halfway back up on the bed and called 911."

As paramedics loaded her onto a gurney, they tried to gauge her level of consciousness.

"I was scared to death," Applegate said. "I knew something was seriously wrong, especially when the medic asked, 'Do you know what year it is?' And she mumbled, '1996.' "

At the Mercy San Juan Medical Center emergency room, Dr. Dale Curtis knew Amy was gravely ill, "a very sick young lady," he said.

He ordered X-rays, blood and urine tests. He put her on intravenous fluids and called Dr. Jennifer Dean, a "hospitalist" who would coordinate her care there.

Dean knew this: Amy was a young, healthy woman. No history of drug abuse. No known medical or psychiatric problems. Now, she couldn't walk or talk.

"She was talking through her eyes, though," Dean recalled. "It was like she was trying to tell me she knew what was going on, but she was locked in."

Amy's jaw was immobile, her legs stiff. Her big toe turned up when Dean stroked the bottom of her foot. Every indication suggested a neurological problem.

Dean ordered a spinal tap and a brain MRI, and contacted neurologist Peter Skaff.

"It sounded like she had encephalitis," Skaff said later.

Beyond other symptoms pointing to brain inflammation, Skaff noted what appeared to be a type of seizure activity. Amy would stare off into space and nervously fiddle with her bedsheets. A test of her brain activity confirmed the seizures.

Meanwhile, a spinal tap turned up an elevated white blood cell count, indicating an infection, again suggestive of encephalitis.

But the MRI of her brain was puzzling. It showed an unusual pattern in her corpus callosum, the part of the brain that connects left and right hemispheres.

Hers was a pattern more suggestive of multiple sclerosis. It's a central nervous system disease in which a loss of myelin, the protective coating around the nerve fibers, disrupts the body's electrical system and causes physical and cognitive problems.

"But MS is not something that comes on with the overwhelming, all-embracing attack like this," said Dr. Peter Murphy, director of the hospital's intensive care unit, where Amy had been transferred.

By this time, Amy had been put on intravenous antibiotics and antiviral drugs, to no avail.

Within 24 hours of her arrival, she had slipped into a coma and was placed on a mechanical ventilator.

At Amy's bedside, Susan Applegate said, reading her daughter's childhood stories kept her from fearing the worst. For days she read them over and over again: "The Rainbabies," "Princess Furball," "The Steadfast Tin Soldier," and Amy's favorite, "A Wish for Wings That Work," about a penguin yearning to fly, then learning to appreciate his own special attributes.

While Susan Applegate stood vigil, doctors grew increasingly concerned.

Blood tests had ruled out West Nile, herpes and other viruses that can cause encephalitis. A followup spinal fluid analysis found the white cell count had gone back up. A followup MRI showed the brain pattern abnormality had worsened.

By this point, doctors suspected Amy could be suffering not from an infection, but from an immune system malfunction.

They tried steroid drugs, known to block production of chemicals that trigger inflammation. When that didn't work, they treated her with intravenous immunoglobulin, a costly blood product sometimes used to combat serious autoimmune reactions. She remained the same.

Finally, they used a method called plasma exchange, removing her blood – and with it the circulating antibodies thought to be responsible for the immune system's malfunctioning – then returning it to her body.

"After three or four treatments, we started to see some responsiveness," Skaff said.

"I noticed her fluttering her eyes, or she would move her toes," said Susan Applegate. "Bit by bit, she could move her arm up, or turn her head."

Eventually, when friends would visit, Amy would brighten with a broad smile.

Three weeks passed and finally, the diagnosis was clinched: acute disseminated encephalomyelitis, in which Amy's immune system attacked her brain, stripping it of myelin.

The disease was most likely triggered by a mild virus. It affects one in about 250,000 people, typically children and adolescents, and can be deadly or cause permanent disability.

"It's the kind of thing you might see once in your career," Skaff said.

Amy was moved to the intensive care unit at Kindred Hospital in Folsom, a rehabilitation facility for complex patients who need long-term care.

Bernardo Gutierrez and other nurses established a rapport with Amy, still mostly immobilized and dependent on the ventilator. Amy would scowl or frown when she was angry or sad. She mouthed words for her various needs and learned to signal "yes" and "no" by lifting her pinkie finger once or twice.

"She was totally dependent on us," said Gutierrez, who spent hours talking with her during her stay.

At Kindred, Amy started talking again – even with tracheostomy tube still in her throat – and took her first shaky steps. It was a slow, agonizing process; she had lost 30 pounds and every ounce of strength.

Mostly, Amy remembers being bored.

"I missed my friends and my family," she said. "I wanted to get back to my old life."

Since leaving Kindred at the end of December, Amy has made remarkable progress. Her tracheostomy tube was removed in January. This month she started a rehabilitation program.

In speech therapy a specialist challenges her with games to sharpen memory and enhance problem-solving skills, perhaps the most vexing of the deficits Amy experienced as a result of her illness.

Amy is eager to get back to the children she cared for before she became ill.

"I think I will appreciate everything more, helping them to learn," she said. "It's almost like I can relate to them in some strange way."

* * *

Like Amy, I had a virus which didn't show up on any of the tests that were ordered.  The 105 fever proves there was a virus, the problem was, the person who was with me when I collapsed didn't know if I had medical insurance and didn't want to run up a big hospital bill that I couldn't pay, so chose to care for me at home.  With no ER documentation proving that I had the fever, doctors are free to tell me that I'm mistaken, I never really had a virus, just psychological problems.  Yet, no psychiatrist can ever find the problems that are supposed to be there.

All the medical findings on Amy are shown by researchers to exist in CFS.  Yet, the Bee runs a long article about her "once in a lifetime" disease, while refusing to publish any of the research advances in an article relating them to CFS.  Why?  Because they once took the stance that CFS isn't a real disease and don't want to contradict themselves.

I'd urge all CFS patients who recognize Amy's symptoms to post a comment to the article and see if we can convince the Bee that they're going overboard on something that looks a lot like CFS ... if only most CFS patients were treated in the hospital instead of staying home because they think it's "just the flu".