Even Prognosis Elusive for Sufferers of New Disease

Susan, a 46-year-old Newport Beach massage therapist, has always been cautious about drugs--even those prescribed by a doctor. So six years ago when she started having occasional trouble getting to sleep, she was relieved that her doctor recommended supplements of L-tryptophan, an amino acid that occurs naturally in many foods.

“I only took it now and then, and it seemed to help me relax,” she says. “It made me feel better to know it was something natural. I didn’t want to get hooked on a drug.”

But for the past several months, Susan has been in such pain that she often needs narcotics to get to sleep. The L-tryptophan supplements she once took have been identified as the cause of her problem, a brand new disease called eosinophilia-myalgia syndrome (EMS).

Because EMS is a new disorder, Susan is reluctant to reveal her full name for fear that she may face discrimination from people who fear her illness is contagious, even though so far there is no evidence that it is.

The constant, severe pain--”Sometimes it’s so bad it makes me hysterical,” Susan says--is only one of the symptoms. Susan’s muscles have become weak and atrophied; her lung capacity has been reduced. She can walk no more than a minute without having to stop and rest. A neurologist has identified nerve damage as well.

Because her muscles have contracted, she no longer has full range of movement in some joints. “I can only raise my arms part of the way,” she says. Her skin has thickened in some areas, and some of her hair has fallen out.

Still, Susan is healthier than many other EMS victims, according to her new physician, Dr. Ruth Deerfield of Westminster, one of a handful of doctors nationwide who have taken a special interest in EMS.

“There are people who are quadriplegics with this disease,” Deerfield says. “There are people on ventilators. There are people whose muscles are so atrophied they look like polio victims. There are people who are so weak they can’t swallow--the food just keeps going into their lungs. They have to be fed with tubes going into their intestines.”

Since the disease was first identified last November, more than 1,300 cases have been reported to the U.S. Centers for Disease Control. At least 19 people have died, four of them in California, according to Tom Gardine, a spokesman for the U.S. Food and Drug Administration in Washington.

About 90% of the EMS victims reported so far are women, according to the CDC, with a median age of 48 years. Most--87%--became ill during or after July, 1989. All took L-tryptophan supplements for anywhere from two weeks to 15 years before they developed symptoms.

“People have been taking L-tryptophan for years,” Deerfield says. “It’s an essential amino acid, which means that it’s needed but the body can’t make its own. It occurs in many different foods--the best sources are milk and turkey.”

Although there is no conclusive scientific evidence that L-tryptophan induces sleep, anecdotal reports convinced many people that it could help. Some people also took the supplement for depression, premenstrual syndrome, or as part of a multivitamin supplement.

“Nobody’s had any problem with it until recently,” Deerfield says.

After the first EMS cases were identified, the U.S. Food and Drug Administration ordered all L-tryptophan supplements of 100 milligrams or more removed from store shelves. Smaller dosages have not been removed because “at the time, there was no association of illness at (ower) levels,” Gardine says. “But now there is one confirmed case at a lower level, so we are re-evaluating the situation and may have some additional news shortly.”

Meanwhile, Deerfield is treating 10 EMS patients with steroids, antihistamines and pain medication.

“It’s terrifying when you ask a doctor what’s going to happen and they say, ‘I don’t know,’ ” Susan says. “But they don’t. There is no prognosis for this disease.”

Susan sought help from Deerfield after seeing news reports about a filter treatment to remove L-tryptophan. She had been ill since August, feeling weak and later pain. “By November, the pain was all over my body.”

“By the time I saw Dr. Deerfield, I had gone through every test in the world,” Susan says.

“The pain is like, if you hit your funny bone, it’s that pain, intensified billions of times and all over your body. It’s a constant reminder that I’ve been violated. Before this, I was a healthy, vibrant woman. I played tennis, rode my bike, went to the beach. I can’t do any of that now.”

Another of Deerfield’s patients, Marilyn Hilder, 47, of San Bernardino, shares the frustration. When she went to her family doctor last August, he ran numerous tests and then sent her to a specialist. Several specialists later, she still had no diagnosis or prognosis. “It was obvious to them that there was something serious, but they couldn’t say what it was or how long it would last. I kept asking, ‘Am I going to die?’ and they would say, ‘I don’t think so.’ ”

Last November, Hilder, who had also taken L-tryptophan, saw a televised news report about EMS and called her doctor. Her husband, Gary, called the FDA, the CDC and the state and county health departments. After seeing a report about Deerfield on television, they called her office for an appointment.

After several months of treatment, Hilder began to improve slightly. “But then it all started coming back again,” she says. “Then we discovered that the multivitamin I was taking also contained L-tryptophan: 3.6 milligrams.” Hilder stopped taking the vitamins, but so far the symptoms have not improved.

No one understands exactly why L-tryptophan supplements have caused EMS when the same amino acid in foods has caused no problems. The L-tryptophan itself is made in Japan, although it is manufactured into pills in the United States. Bottles of L-tryptophan may not say the amino acid is imported, and Deerfield says many of her patients’ bottles are labeled “contains only natural substances.”

“There are many, many, many theories,” Gardine says. “So far our analysis has not found a likely contaminant. We’re looking for the presence of many things. Our theories range from a chemical contaminant to a microbial contaminant, but we have not found either. There’s also a possibility of residue of microbial growth, but we have not yet found that. It could be that a portion of our population cannot adequately metabolize L-tryptophan, or could be allergic to it. But there is absolutely no indication that anyone has gotten ill from naturally occurring L-tryptophan in food.”

Gardine says FDA representatives have visited the Japanese producers of L-tryptophan once and are now coordinating a second trip. He says the FDA is aware of how the L-tryptophan is manufactured, “but it’s a trade secret and I’m very reluctant to discuss it.”

Deerfield, however, says she has learned that “the way most of the companies make it is through bacteria that have been treated with ultraviolet radiation. The bacteria produce L-tryptophan. My guess is that something has gone wrong with that process. How do they know the bacteria are making it right? Maybe there’s a virus that has developed. That may take a long time to discover.”

Meanwhile, Deerfield says she’s getting calls from people all over the United States who want to know where they can buy L-tryptophan. “I tell them, ‘You don’t understand. It’s killing people.’ ”