Recovery From Tryptophan Poisoning Is a Painful Fight

Last summer, Debra Baxter often could be found on the beaches ofSan Diego, sunning herself as she watched her son play.

But the summer of 1990 won’t find her back at the beach with 5-year-old Ian The 36-year-old woman is sure that just getting in or out of a sand chair would be impossible for her weakened muscles. Besides, when one spends 20 hours a day in bed there isn’t much time left for a trip to the beach.

Baxter is one of 32 San Diego County residents, 275 Californians and 1,517 Americans who health officials have confirmed were somehow poisoned by tryptophan pills.

Like Baxter, the most seriously affected live a day-to-day existence of constant pain, overwhelming fatigue, disabling muscle weakness or paralysis, and distressing memory loss.

Touted as a “natural” remedy, tryptophan was supposed to make these people sleep better. Instead, today they wonder if they’ll ever awaken from a medical nightmare.

“The worst thing is not knowing if I’ll get better,” Baxter said. “It’s to just keep looking at your doctor saying, ‘When is this hell going to end? When is this pain going to end?’

“I have pain all the time. I take pills and I sleep--the sleeping is the only part that takes the pain away.”

Baxter’s nightmare has a name, eosinophilia myalgia syndrome (EMS). It is a previously rare disorder in which the body makes too many eosinophils, a type of white blood cell that usually fights off bacteria or worms. A normal eosinophil count is 50 to 350 cells per cubic millimeter of blood. EMS patients have counts of several thousand or more.

Since last summer, 24 Americans have died, four of them in California, because of complications of EMS.

Federal officials confirmed last week that still-unidentified contaminants appear to be responsible for the nationwide EMS outbreak. The Food and Drug Administration has ordered nearly all tryptophan-containing products removed from store shelves.

In November, the Food and Drug Administration recalled all dietary supplements that would result in a daily intake of more than 100 milligrams of the amino acid. In March, the recall was expanded to products that contain smaller amounts of tryptophan.

The November action came after public health officials in New Mexico discovered an EMS outbreak there associated with tryptophan use. The U.S. Centers for Disease Control then began collecting case reports from other states, and the EMS total mounted quickly.

Tryptophan is an amino acid necessary to the human body and found in a wide variety of foods. Before the recalls, it had grown by word of mouth into a widely recommended “natural” remedy for everything from insomnia to stress and premenstrual syndrome. Even physicians were suggesting it to their patients.

They did so based on a few studies indicating that tryptophan elevates the level of the sleep-inducing chemical serotonin in the brain.

Studies done since the recall in Oregon and Minnesota appear to point primarily to tryptophan made by one amino acid manufacturer as linked to EMS cases. This idea is not universally embraced, however, because some EMS cases are not linked to that manufacturer at all.

“I think it’s going to turn out that there is a contaminant that somehow interacts in certain susceptible individuals to set their metabolism of tryptophan off in an altered direction,” said Dr. Phillip Hertzman, a New Mexico physician who helped identify the tryptophan connection to EMS last year. “Which would be why not everybody who takes it gets sick.”

As a federal investigation continues, an international conference on the problem is being planned for June 12 and 13 in New Mexico.

Meanwhile, not knowing what toxin is causing the illness has made EMS difficult to treat, and impossible for patients to know if their damaged bodies will recover.

Baxter had been regularly taking tryptophan for insomnia for about two years before she began having early symptoms of EMS last August. By Sept. 11, muscle pain was so bad that she went on disability from her job as a materials buyer at General Dynamics.

Baxter’s count of eosinophils has returned to normal, but the condition’s crushing symptoms remain.

She began a conversation recently by stumbling over her own age: “37. No, wait. I just had a birthday. 1954. I’m 36.”

It’s the kind of memory lapse that’s common among EMS-ers, as victims call themselves.

“Sometimes I can’t remember my address,” Baxter said, beginning a litany of her problems.

Periodically her voice gets muddy, as muscle spasms in her jaw overtake her words:

“I can’t put on my socks. I can’t put on my underwear. I can’t put on my shoes. I can bend at the waist, but if I bend at the knees I immediately fall to the floor. I have fallen so many times I am black and blue. I can’t lift my child. I can’t do anything around the house.

“I can’t do the laundry because I fell in the laundry room. I’m scared to be alone sometimes. That’s why I don’t do anything, because I’m afraid if I fall I’ll just lie there.

“I liked to do art things, but now my hands go arthritic and so it’s very difficult. I can hardly write. I forget things. I don’t even get the mail anymore because I forget where I put it.”

To get up from the couch, where she rests when not in bed at her Pacific Beach home, Baxter has to push off with both arms.

Like Baxter, Escondido resident Charleen Brown, 61, is still struggling with the aftereffects of tryptophan, which she used to help her sleep after getting off work as a registered nurse at 12:30 a.m.

“I never wanted to take, like, a sleeping pill or any kind of tranquilizer because I know how addicting they are,” Brown recalled. “As it turned out, I probably would have been better off if I had taken a drug.”

Her first symptoms last October were shoulder and leg pain so severe that she had to quit her job. In December, she spent three weeks in a hospital intensive care unit because of circulatory problems in her left arm; her left hand has since frozen into a useless claw.

Brown’s right leg is paralyzed from the knee down. Although she spends most of her time in bed, she can walk short distances by dragging the leg along.

“If I stay up for two hours I consider that a real bonus,” Brown said. “This has literally destroyed my life.”

One of Brown’s few outings is a monthly meeting of a support group that Baxter put together by calling all the rheumatologists in the Yellow Pages and asking them to refer patients to her. About 40 people are in it now.

(This is more than the official tally of 32 EMS cases in San Diego County, but public health officials say they are certain many cases have gone unreported.)

Support groups have sprung up all over the country, and they exchange information regularly via newsletters and phone calls.

Diana Bullock, a Spring Valley woman who took over leadership of the support group when Baxter’s energy flagged, said the group is especially important to its members because most spent months going from doctor to doctor trying to find an explanation for their problems.

It wasn’t until the FDA’s recall of tryptophan last November that doctors recognized EMS as a disorder connected to dietary supplements of the amino acid. Bullock had begun seeing doctors a year before that.

Her main symptoms were muscle weakness--”I couldn’t get a glass of water to my mouth”--and intense pain that seemed to come in layers.

“I swore I could feel the bone, the tissue around it and the skin all hurting separately,” she said.

Members of the support group also exchange information about lawsuits that some of them have filed against stores where they bought tryptophan, and about medical treatments.

Steroids are the primary treatment used against EMS, but in some people they provide little relief, patients and doctors say.

Cleansing the blood with a procedure similar to kidney dialysis also has been tried, and at least one San Diego patient underwent chelation--a chemical cleansing of the blood usually used to treat lead or mercury poisoning. Baxter had several treatments with an anti-cancer drug to bring her eosinophil count down.

But the victims with the most serious symptoms confirm what the doctors studying EMS say: No single treatment works for everyone, and recovery, if it will come at all, is very slow.

In many ways, the problems EMS victims are experiencing resemble “toxic oil syndrome” seen in Spain in 1981, when people bought contaminated olive oil, doctors say. About a quarter of those people sustained long-term nerve damage, and there is concern that this might also prove the case with EMS, said Dr. Edwin Kilbourne, chief of the health studies branch at the U.S. Centers for Disease Control.

“In particular, the nerve damage did not seem to get better very quickly,” Kilbourne said. “There are a substantial number of people in Spain who still have residual paralysis or limitations of movement.”

That’s the kind of outlook that EMS victims hope is proven wrong.

Bullock, who stopped taking tryptophan 18 months ago, so she is farther along in her recovery than most, says she has seen slow improvement.

But she still doesn’t feel strong enough to re-enroll at Cuyamaca Community College: “It’s a long walk up to campus from the parking lot. I don’t know if I could do that and have any energy left for class. Every morning I get up and I have to plan my day as to how much energy I will use.”

Baxter longs to be able to do simple things like pick up her son, or straighten her arm. One characteristic of EMS is broad patches of thick, tough, shiny skin that doesn’t stretch.

“I just pray that it’s not permanent damage--that I’m going to be able to straighten my arms out like normal people, completely straight, without feeling that stretching, that tightness of the skin. That the pain is going to go away someday,” Baxter said.

“I sit here and look at this wheelchair in my living room and think, God, I want that damned thing out of here so bad,” she said. “I hate to think the rest of my life is going to be without being able to walk the dog. Or run.

“I know I’m not going to die. But I also don’t want to live like this.”