She’s Plagued by Pain--and Wants Answers : Disability: Cecile Gracy took L-tryptophan to improve her health before her wedding. She claims a bad batch of it has ruined her life.

Last July, Cecile Gracy was an excited Burbank bride-to-be who vowed to get in shape before her September wedding. So she began exercising, dieting and taking a health supplement called L-tryptophan.

Gracy had taken the over-the-counter product in 1984 after her doctor recommended it for sleeping difficulties and cramps. The tryptophan proved so effective that she figured it would help her become a healthy, fit bride.

“What had been good for me before is going to be good for me now,” Gracy recalled saying last year. Though tryptophan is not normally prescribed for fitness or dieting, she had come to regard the supplement as a harmless vitamin. “I wanted to clean up my act, and this supplement was kind of like extra protection and support.”

One year later, 31-year-old Cecile Gracy is disabled. She cannot walk without a cane and has difficulty breathing. She feels pain in her muscles when her new husband tries to hug her. She cannot remember much of what she reads or hears. And she fears she will never be able to have children.

What once cured her cramps and was expected to improve her health, her doctors say, is precisely what disabled her: the supplement L-tryptophan.

On Monday, Cecile and her husband filed a $30-million lawsuit in Burbank Superior Court against the largest of six Japanese suppliers of tryptophan. They allege that Showa Denko of Tokyo produced a contaminated batch of the product that damaged Cecile’s body.

“Everything’s gone to hell,” said Mike Gracy, her 27-year-old husband, in an interview at the couple’s small Burbank apartment. “It’s been almost a year and she’s not even close to being able to function normally. They don’t even know if she’ll live past her next birthday.”

Cecile and hundreds of others nationwide were diagnosed last fall as having eosinophilia-myalgia syndrome, a mysterious ailment marked by abnormal levels of white blood cells called eosinophils and severe muscle pain. These cells are part of the body’s immune system, but in this ailment abnormally large amounts release a toxin that attacks bodily tissues. Victims and doctors initially were baffled by the cause, but researchers eventually linked the syndrome to tryptophan. The U.S. Food and Drug Administration recalled the supplement in mid-November.

Medical, federal and state officials say there is increasing evidence that the epidemic was caused by a contaminated batch of tryptophan manufactured specifically by Showa Denko.

Neither the FDA nor the federal Centers for Disease Control has officially blamed the company, and Showa Denko has acknowledged only a “statistical association” between the epidemic and its product, said Bob Schwadron, a company spokesman. He said more research is needed to pinpoint the cause.

But other medical researchers said they believe Showa Denko is responsible.

“We have no evidence that it’s anybody’s product but Showa Denko’s,” said Dr. Michael Osterholm, a Minnesota state epidemiologist who helped author an upcoming New England Journal of Medicine article that details that theory.

For Cecile and Mike Gracy, that is a partial relief. Finding a cause should help them seek redress, and more important, might help find a treatment or cure, they said. But it is the uncertainty of the future--of whether Cecile will fully recover, bear children or die--that worries the newlyweds.

“The worst thing is the unknown,” Mike Gracy said. “We’re staring into an abyss and there’s nothing coming back. To start a life together like that . . . it’s not fair.”

Neither Cecile, a blond-haired woman with a soft, girlish voice and face, nor Mike, her burly, bearded spouse, was ever athletic or particularly health-conscious, they said. But they loved the outdoors, often riding mountain bikes or going four-wheel-driving in the hills.

Cecile Gracy diligently recorded memories of those times on a wall calendar she treated as a daily diary. The square for each day was filled with notes describing her workday and the time she shared with her husband.

Then, starting in July, “it just got filled with rotten things,” such as notes about her deteriorating condition, she said. Shortly after she resumed taking tryptophan, she began getting sore throats, and her face, feet and hands started to swell. Soon she was having trouble breathing and was losing weight and hair.

Her co-workers and friends attributed the problems to nervousness about the upcoming wedding; she and Mike thought it was the stress of her job, as a title assistant at a large Glendale real estate company.

The Gracys were married Sept. 16, but the honeymoon was cut short because Cecile felt increasingly ill. In the weeks that followed, she began to feel pain in her muscles and to lose her memory at work. Eventually, she could neither urinate nor eat. But until she could no longer get the pills down her throat, she said, she continued taking tryptophan.

“That’s the pathetic part,” she said. “Every morning I’d say, ‘OK, maybe today the tryptophan will get rid of this stress and these problems.’ ”

Cecile was hospitalized in October and was routinely ordered to stop taking any medicines or vitamins. After three weeks of testing, her doctors knew she had an abnormal level of white blood cells but could not identify her illness.

Dr. Peng Fan--a Sherman Oaks rheumatologist who years earlier had recommended tryptophan for her cramps--prescribed prednisone, a steroid, for reducing the white blood cell count, and sent her home. Weeks later, as other cases appeared nationwide, Fan and other doctors identified her case as being part of the epidemic of eosinophilia-myalgia syndrome, caused by tryptophan.

Today, Cecile Gracy visits a doctor and physical therapist six days a week. But most of her time is spent resting on the couch or sitting in a hot bath, trying to relax her muscles, she said. Each day, Mike Gracy rises early, helps her get settled for the day, and returns periodically from his job as a manager at an electrical supply company to check on her.

Most of his nights and weekends are spent sifting through stacks of medical documents, he said, and fighting with his insurance company over its share of the bills----which he said now might be in the six-figure range. They are worried that if her condition deteriorates, the demands of caring for her could force him to lose his job, threatening the couple’s ability to pay their share of the medical bills.

“She’s still pretty afflicted at this time,” Fan said in an interview. “She still is in a lot of pain from the damage done by the tryptophan. Right now, we really don’t have any effective treatment. All we have are some medicines that make it more tolerable.”

The prednisone steroid, despite some side effects, has helped reduce her white blood cell count, Fan said. Cecile is able to move around somewhat with a cane and at times can accomplish household tasks, although she said her memory is still poor.

Fan said Cecile actually is faring better than some of the other eosinophilia-myalgia syndrome patients he and other Los Angeles doctors now are treating. Some people afflicted with the malady have died, while others have suffered few or no symptoms. But he said that it is impossible to predict her future.

That is what frustrates and scares Cecile and Mike Gracy the most. And what makes them angriest at Showa Denko, the company they allege is responsible.

“We wanted to get married, build a house and raise a family. My biggest dream was to have a set of twins,” said Cecile, her voice cracking. “I don’t want vengeance. If they can come up with the chemical to reverse all this, I’d take that instead of any amount of money.

“There’s a fair trade,” she said. “Make it go away.”

BACKGROUND

Tryptophan is a natural amino acid contained in proteins found in meat, eggs, dairy products and other foods. Tryptophan supplements were widely used for a variety of problems, including sleeping difficulties, anxiety and premenstrual syndrome. The U.S. Food and Drug Administration last November ordered the supplements recalled after they were linked to an epidemic of a blood and muscle ailment called eosinophilia-myalgia syndrome. So far, more than 1,500 cases, including 27 deaths, have been reported to the U.S. Centers for Disease Control.