Brand-New Disease Debilitating -- Rare Blood Disorder Linked To Supplement

PORTLAND - It's like having the flu forever.

That's the way Linda Giesler describes eosinophilia myalgia syndrome, a rare blood disorder apparently triggered by a contaminated batch of a dietary supplement called L-tryptophan.

Giesler, 41, has lost her job and her health. Until she applied for welfare, she was in danger of losing her apartment. Nobody can tell her when she might be well enough to work again.

The Portland woman is among 61 people in Oregon who have been diagnosed with eosinophilia.

Federal health officials say 1,538 cases have been reported nationwide, along with 27 deaths. But because of the way cases are reported to the Centers for Disease Control in Atlanta, officials say perhaps 6,000 more people are sick with the disease.

The link between the disease and L-tryptophan was made about a year ago, after dozens of people across the country fell ill with eosinophilia.

In past years, the rare blood disorder was usually associated with parasitic conditions or allergies. But a year ago, epidemiologists began to see connections between the disease and L-tryptophan, a nutritional supplement sold in health-food stores as a remedy for insomnia.

L-tryptophan, a common amino acid found naturally in many foods, including milk and turkey, has been taken in pill and capsule forms for decades with no known side effects.

But during the past year, researchers have found a connection between the disease and L-tryptophan manufactured early in 1989 by Showa Denko, a Japanese company. Researchers believe that by changing its manufacturing process, the company introduced a contaminant into its L-tryptophan.

However, physicians are unsure just how it causes the disease. And they are just as uncertain what fate holds in store for the victims.

Giesler, who began taking L-tryptophan in April 1989 as a sleep aid, was feeling tired and achy much of the time by August 1989.

Five days after opening a bookkeeping office, she was admitted to Providence Medical Center. Tests revealed a high concentration of eosinophils, a type of white blood cell whose function is not well understood.

``My doctor told me I had eosinophilia and that they didn't know what caused it,'' she said.

Then, in November, her physician told her she most likely had acquired the disorder through L-tryptophan.

Through the next four months, Giesler fought off exhaustion and pain in her arms and legs in an attempt to keep her office open.

``I tried desperately to do the work,'' she said. ``I bought a little fold-out bed and I'd work and then I'd lie down. I just wasn't able to do it.''

Giesler said that more than a year after her first symptoms appeared, she doesn't feel better.

``Some days I can't even hardly get out of bed,'' she said. ``If I walk from here to the kitchen I'm out of breath.''

Dr. Tom Deloughery, a fellow in hematology at Oregon Health Sciences University and the Veterans Affairs Medical Center, has five patients with the L-tryptophan-induced ailment.

``The most frustrating thing about this illness is it's something brand-new,'' Deloughery said. ``Usually you can roughly predict the course of a disease. But I'm not able to tell patients that in X amount of time they'll have a 20 percent or 90 percent chance of being well.''

Improvement is uncertain as well as slow.

``The disease acts a little bit different in every patient,'' Deloughery said. ``Most patients seem to very slowly be getting better. They'll feel better for a while and for no apparent reason they'll get the shortness of breath, the myalgia again.''

The illness differs from most other poisoning cases.

``The very unusual thing was that people often got worse even when they stopped the tryptophan,'' he said. ``It seems that this product triggers an abnormal process.''

Medical investigators at the national Centers for Disease Control are trying to find a way to help victims of the disorder but so far have found few answers.

Dr. Rossanne Philen, a CDC epidemiologist, estimates there may be as many as 6,000 others who are ill but whose conditions do not meet the agency's strict reporting guidelines.

Philen said that preliminary results of one study indicate that about one-third of the victims improve substantially shortly after discontinuing use of L-tryptophan. Another one-third continue to deteriorate and the remaining patients stay about the same.

Giesler is frustrated and angry about her prospects.

``I'm looking at living the rest of my life not being able to do what I want to do,'' she said. ``I want to be able to contribute something to society. It's real hard to have your mind working and yet your body can't follow suit.''