Gulf War Syndrome remains a puzzling legacy for veterans

by Mark Jaffe

Philadelphia Inquirer

August 1, 2000

On a hot, bright afternoon near the end of Operation Desert Storm, Army Staff Sgt. Paul Lyons walked out of a tent and almost immediately found himself on his knees, weak and nearly blinded. It was, Lyons said, "something in the breeze, a smell."

"We were on the border between Saudi Arabia and Iraq," Lyons said recently. "I remember the day exactly, because since that day things just haven't been right."

Things haven't been right for at least 118,000 American veterans of the Persian Gulf war who, like Lyons, have been plagued by a bedeviling assortment of health problems that have become known collectively as Gulf War Syndrome.

Now, almost 10 years after Iraq invaded Kuwait on Aug. 2, 1990, and triggered the gulf war, the link between the war and the medical ailments remains frustratingly unclear. Despite hundreds of millions of dollars - including $145 million from the federal government - spent on hundreds of studies, even the existence of the syndrome remains a matter of debate.

Though American battlefield casualties during the 1991 offensive were light, the toll attributed to Gulf War Syndrome has been heavy, and it remains perhaps the war's most somber legacy.

For Lyons, who was with the 101st Airborne from Fort Campbell, Ky., the complaints include respiratory problems, chronic fatigue, eye troubles and skin rashes.

Other veterans suffer from arthritis, muscle weakness, severe headaches, digestive problems and psychological disorders, such as depression and anxiety, which they blame on toxic substances they encountered in the gulf.

"At first I didn't think it had anything to do with the war," Lyons said. "But then you come to realize something happened to us over there."

Department of Defense officials say, however, that the wide-ranging melange of ailments of gulf war veterans may or may not be linked to the war.

"The jury is still out," said Col. Frank O'Donnell, director of medical outreach in the Office for Gulf War Illness.

The federal government has conducted 160 studies of gulf war illnesses, but it still lacks a definitive answer. The government plans to spend at least another $20 million on research, O'Donnell said.

He balks at using the term "syndrome."

"We don't think we've identified a new illness," O'Donnell said. "We've identified lots of illnesses among gulf war veterans."

But since about one-sixth of the 700,000 people who served in the war have filed medical complaints with the federal government, many observers contend that although the link between the war and illnesses may be elusive, it is strong.

"That war was fought in one of the most toxic battlefield conditions ever known, and clearly that could have an impact," said Arthur Caplan, a member of the the Presidential Advisory Commission on Veterans' Gulf War Illness.

"In technological and toxic war, the casualties may not come on the battlefield but afterwards," Caplan said. "It is a message people didn't want to hear and still don't want to hear."

Caplan, who is director of the Center for Bioethics at the University of Pennsylvania, acknowledged, "There's a lot we don't know."

"The range of illnesses and complaints don't lead to any single agent," he said.

The search for a cause of the myriad illnesses has turned up a number of possible culprits. Researchers have looked at possible exposure to poison gas or to armor-piercing bullets containing spent uranium. They also have investigated possible links to the chemical pyridostigmine bromide (PB), taken by about 300,000 troops to counteract effects of the nerve gas soma.

Researchers have also examined the possiblity that the stress of wartime duty, combined with the effect of bacteria or vaccinations or battlefield chemicals, could have made people ill.

"We aren't ruling anything out, and some of these things may have had an effect," O'Donnell said.

In the case of PB, for example, the federal government is funding 26 research projects at a cost of $20 million.

"If it turns out that PB has a potential downside, then we have a problem with adversaries who might use soma," O'Donnell said.

But even if tests eventually show that PB is toxic, only about 43 percent of gulf war veterans took it.

That's what makes the search so confounding - not all troops were exposed to all the potential toxicants, and, individually, the complaints are all rather common.

"There is no doubt that veterans from the gulf war are ill," O'Donnell said. "But we haven't found anything exotic, anything new."

To Paul Lyons, who left the Army on a medical discharge in 1997 and now lives in Clarksville, Tenn., the answer seems clear.

"The Pentagon doesn't want to find a gulf war disease," he said. "I can't blame them. I didn't want to believe it, either."

"At first when I came home, I thought it was all in my mind," said Lyons, who had been a communications specialist for 15 years.

But recurrent bouts of weakness, an inability to stand sunlight, and skin rashes drove Lyons to seek medical help. "I had to go to private doctors and pay for it out of my own pocket," he said. "The army wouldn't treat me."

It was a civilian doctor who, after reviewing Lyons' litany of ailments, first questioned if the soldier had been exposed to anything during the war that might have impaired his health.

"I was stunned," Lyons said.

Lyons believes he was exposed to a mustard gas agent, although there is no record of a mustard-gas incident during the war. He also was among the troops that took the little white PB pills.

Finally, after four years, Lyons left the service and became part of that legion searching for an answer to what happened to them in the gulf.

"They deserve an answer," O'Donnell said, "and they deserve treatment."

But some critics doubt whether that answer will really be forthcoming. "The Defense Department is engaged in spending money, not finding an answer," said Robert Haley, a professor at the University of Texas Southwestern Medical Center in Dallas.

Haley's medical team, using sophisticated radio wave scanning technology, believes it has detected a pattern of brain-cell damage in a small group of gulf war veterans.

"I think what we are looking at is a basal ganglia illness," Haley said. The basal ganglia are located deep in the brain just above the brain stem and help regulate nerve impulses that control movement, memory and emotion.

Some of the gulf war veterans' symptoms, Haley said, look like the early stages of Huntington's disease, a genetic illness that destroys the basal ganglia.

Haley's group's findings were published in the Journal of the American Medical Association late last year. Haley said that such cell damage could manifest itself in a variety of ways consistent with the catalogued complaints.

He also said he suspects that a variety of toxins - including PB tablets, DEET pesticide, and saran gas - might have caused the effect. The research, however, is based on a sample of just 28 sick gulf war veterans and 18 healthy veterans. That is too small a study to make any definitive judgment.

Haley has been unable to get the Pentagon to fund more brain and nerve research. He blames that on what he says is a Pentagon unsympathetic to alternative lines of research.

O'Donnell said that the last phase of a comprehensive study by the Department of Veterans Affairs, including detailed clinical evaluations of veterans, should be completed by next year.

"When that study is completed, we should have a much clearer statistical picture of exactly what the health situation is for gulf vets," Haley said.

The seemingly unending and inconclusive studies, however, leave veterans like Lyons frustrated. "I just don't know if they'll ever figure this out," he said.

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Mark Jaffe's e-mail address is mjaffe@phillynews.com