Lingering Casualties A Deep Gulf Of Confusion Treatment Of Gulf War Syndrome Patients Hampered More By Uncertainty Than Conspiracy

FOR THE RECORD (February 18, 1997): Correction: Monday stories about Gulf War syndrome incorrectly described acetaminophen as an anti-inflammatory drug. It is an antipyretic and analgesic.

Dr. Howard Platter hates to see patients with Gulf War syndrome walk through the door.

They are impossible to diagnose and hard to treat, says Platter, an environmental medicine specialist at the Spokane Veterans Affairs Medical Center. They’re miserable. Chances are they aren’t going to get better in the near future.

Platter’s first course of treatment includes understanding, “TLC” and candor.

“The first thing you can do is not get mad at them,” he said. “I think somebody ought to sit down with the vets and say, ‘We don’t know.’

“We don’t know what was in the air. We don’t know what Saddam Hussein was shooting around. We’re not sure who was exposed to what.”

It is this confusion - not apathy or a conspiracy, as some veterans suspect - that complicates treatment of Gulf War syndrome, Platter and other doctors say.

“It’s not a cover-up,” said Robert Haley, a Dallas physician who has examined hundreds of Gulf War vets. “It’s the fact that all the tools doctors have to diagnose these problems are inadequate.”

Almost by default, Platter is becoming the Spokane VA’s resident expert on Gulf War syndrome. He has extensive experience helping former prisoners of war and Agent Orange patients but emphasizes that he’s not a researcher. The Spokane medical center doesn’t have the budget or facilities to conduct in-depth studies, he adds.

All he knows about the illness is what he sees in local veterans and the reports he reads between his other duties at the medical center.

“Is there a definite syndrome, or are there many syndromes? I don’t know,” Platter said.

“Some people believe the whole Persian Gulf illness is shell-shock syndrome. I don’t believe that - although nobody has ever gone to war who hasn’t had bad psychological stress and hasn’t paid for it for years to come.”

Platter says he suspects many Gulf War vets have chronic fatigue syndrome or fibromyalgia. Both leave patients with some combination of debilitating fatigue, muscle and joint pain, headaches, nausea and memory problems. But that’s not much help, he adds.

“These are conditions which nobody understands stands but do exist,” he said. “A syndrome just means we have an undiscovered disease.”

Platter has personal experience with fibromyalgia. His wife has suffered from it for years and researched it herself when physicians ran out of ideas for treatment. Elaine Platter suggests veterans research everything from vitamins and magnesium supplements to over-the-counter anti-inflammatory drugs such as Tylenol.

Some things that seem to work on fibromyalgia will never be proven to the satisfaction of research-oriented doctors, Platter suspects. Doctors are trained in medical school to compare studies that involve two sets of patients - those who get a new drug and those who get a placebo. The data are collected over months or years, compared and submitted to other researchers who try to duplicate the results.

Only pharmaceutical companies that hope to patent a medicine will spend that kind of money, he said. They won’t spend it to test vitamins, mineral supplements or something available on a drugstore shelf.

Research into Gulf War syndrome also is hampered by other problems, Platter says. Each group of researchers has its own favorite theories and wants to dismiss other groups’ theories as implausible.

“It’s harder than hell to treat this when you’ve got the researchers at each others’ throats,” he said.

Struggling in the dark

Dr. Mark Mendez-Vigo was stumped when a healthy-looking man in his late 20s came into his office in Colville, Wash., two years ago.

The patient, David Achtemeier, mentioned Gulf War syndrome, and while Mendez-Vigo couldn’t rule that out, he had no idea how to proceed. Neither the military nor the VA offered any help.

“It was virtually impossible to find anything about” the syndrome, he said recently. “Now there are over a thousand places to go just on the Internet. But back then, we were being told by every source there wasn’t a problem with Gulf War vets.”

The government’s initial skepticism may have hampered research, he suspects.

It definitely made it difficult for general practice physicians such as Mendez-Vigo to keep an open mind. “We’re trained with a clinical bias to say, ‘Show me the study.”’ He still doesn’t know what is causing the rashes, fevers, nausea and severe aches afflicting Achtemeier - and now, Achtemeier’s wife and stepchildren.

“There are some pretty good sources that suggest whatever is going on is contagious,” Mendez-Vigo said.

Achtemeier’s own research convinced the doctor to prescribe doxycycline, a common antibiotic.

“He is getting better. Why, I don’t know,” Mendez-Vigo said. “It could be killing some bug. But it may not be the antibiotic properties at all. Doxycycline has been around so long that a lot of things are resistant to it.”

Whatever the reason, Mendez-Vigo says he’s pleased with the results. “I’m open to trying anything because the usual medications weren’t going to work.”

A controversial theory

Dr. Garth Nicolson thinks he knows why at least some Gulf War veterans are transmitting their ailments to their families. A biological agent, known as a mycoplasma, is found in some veterans.

How it got there can be the stuff of conspiracy theories - tainted vaccines, deadly cocktails from Iraqi missiles that were covered up by allied leaders or the testing of a new biological warfare device.

But Nicolson is no kook. He’s a respected physician who left a position as a professor and cancer researcher at the University of Texas in Houston rather than back down from his theory that some veterans are infected with mycoplasma fermentans incognitus.

That small life-form is like a bacterium without cell walls. It takes over healthy cells and can be detected only with sophisticated tests. It can be spread by prolonged exposure and can remain latent for long periods.

It also is used as an agent in biological weapons, Nicolson said.

He came across the diagnosis almost by accident. After his daughter had returned from Gulf service, she developed fatigue, fever and pain. Then he and his wife, a molecular biophysicist, and even the family cat experienced similar problems.

Being researchers, they looked for a scientific explanation and began running blood samples from themselves and Gulf War veterans with similar symptoms.

Other researchers questioned their methods and the size of their sample. Top government officials, who contend the Iraqis never used biological weapons, scoffed.

Nicolson left the university’s cancer center and founded the Institute for Molecular Medicine in Irvine, Calif., to research chronic diseases such as Gulf War syndrome.

Government officials have been quick to criticize his research - and almost any research into controversial causes of Gulf War syndrome, Nicolson said.

“We never stated Gulf War syndrome is only due to this,” he said. To those who say there’s not enough research to back up his claims for mycoplasma, Nicolson replies that he never has had the funding.

But he made a counteroffer: Because the Pentagon and the VA won’t pursue this theory, the center tests any veteran for mycoplasma - for free.

A piece of the puzzle

Dr. Robert Haley, the Dallas physician, was interviewing one of the hundreds of veterans he has examined for Gulf War syndrome when a little light went on.

“The guy said, ‘I have chronic fatigue.’ I said, ‘What do you mean by that? Are you sleepy all the time?”’ No, replied the vet. From the time he woke up in the morning until he went to bed at night, he said, he was tired, weak, unable to lift even light objects.

A few days later, another vet said he had chronic fatigue. Haley asked if he meant he was awake but weary. No, said the vet. He slept all the time, couldn’t stay awake.

That’s when it hit Haley, chief of epidemiology at the University of Texas’ Southwestern Medical Center and former researcher for the federal Centers for Disease Control and Prevention. The common terms being used to describe Gulf War syndrome meant different things to different people.

The revelation led Haley to design a study that is considered one of the best so far on possible causes of Gulf War syndrome.

Researchers at Southwestern also got financial support from Ross Perot, the Texas billionaire who became convinced there is something to this disease that veterans kept telling him about.

Haley’s study asked veterans more specific details about their symptoms. If a vet reported he had tingling sensations, for example, researchers asked if they were in his face, his extremities or his trunk.

The reason: Different nerve systems control different body parts. Knowing what’s tingling suggests which system has a problem.

They grouped the suffering vets by clusters of specific symptoms, then interviewed them extensively about what they may have been exposed to.

They subjected them to extensive neurological exams and conducted similar exams on a control group of veterans who didn’t have the symptoms. Top neurologists in the Southwest were asked to review the results.

Looking at the charts individually, the neurologists couldn’t see any problems. Looking at them in clusters, patterns began to emerge.

They measured brain stem activity and discovered a significant number of veterans had brain stem damage.

Haley’s conclusion after two years of research: There isn’t a Gulf War syndrome. There are several - three main ones and three variations of one of those main ones.

All of them are results of exposures to different toxic chemicals - everything from pesticides to flea collars to low doses of nerve gas and the antidote for nerve gas that many veterans were ordered to take.

“These chemicals, individually, do not hurt you,” he said. In combination, however, each can amplify the effects of the others and slowly poison the nervous system.

The research does not suggest a cure, but it does suggest treatment - some of the same types being prescribed by the Spokane VA’s Howard Platter. Certain antibiotics containing additional chemicals to reduce inflammation are the most promising.

Haley expects his research, published last January in the Journal of the American Medical Association, to be controversial.

“Scientific questions are never decided by one study. I want people to shoot at it, to improve it or disprove it.”

, DataTimes ILLUSTRATION: 2 Photos (1 color)

MEMO: Two sidebars appeared with the story: 1. PROMISING TREATMENTS Even though doctors don’t know what causes Gulf War syndrome, they are discovering some things that seem to treat it. “We may never cure it,” said Robert Haley, a physician and research scientist in Dallas, Texas. “But we don’t cure diabetes, either. We come up with strategies to help people live with it.” Here are some promising treatments: Doxycycline. Doctors disagree whether this common antibiotic is attacking a living organism that causes the symptoms, or merely relieving some of the painful inflammation with other chemicals that are part of its makeup. Relatively inexpensive, but patients must be careful of an increased risk of skin cancer from sun exposure. Some patients who can’t tolerate this antibiotic have received relief with Cipro, Azithromycin and Clarithromycin. Anti-inflammatories. Ibuprofen and acetaminophen (Motrin and Tylenol are some common brand names) seem to help with inflammation. Ibuprofen can cause stomach irritation for some patients, doctors warn, and that may increase when combined with doxycycline. Anti-depressants. In low doses, Prozac and Elevil can be used to increase growth hormones and the body’s production of serotonin, which can provide relief for nerve disorders. Magnesium and malic acid. This over-the-counter mineral compound has helped patients with fibromyalgia who suffer from similar symptoms, said Howard Platter, a Spokane Veterans Affairs physician. Other doctors recommend calcium channel blockers, also found at health food stores. Anabolic steroids. These, too, have some anti-inflammatory properties as well as psychic effects that make a patient feel better. But several doctors urged extreme caution with these steroids, whether prescription strength or their diluted over-the-counter cousins. They make a patient more susceptible to infection and carry an increased risk of cancer. Added Haley: “The vets themselves need to be very careful of charlatans with miracle cures. We had one guy offering pills to stabilize veterans’ mitochondrial systems. He wanted $2,000 for them. They turned out to be diet pills.”

2. WHERE TO FIND INFO For years, Gulf War veterans suffering from unexplained medical problems felt alone. Now a wide range of government and independent groups offer information, assistance and counseling

By phone, try: Veterans Affairs Hotline: 1-800 PGW VETS. Spokane VA Center Gulf War Coordinator: 327-0252. Washington State Veterans Affairs Department Hotline: 1-800-562-2308. Idaho State Veterans Services in Lewiston: 1-208-799-3422. Defense Department Gulf War Veterans Hotline: 1-800-796-9699. Defense Department Incidents Hotline: 1-800-472-6719.

On the Internet try: Presidential Advisory Committee on Gulf War Illness: www.gwvi.gov VA Persian Gulf Veterans Illnesses page: www.va.gov/health/environ/ persgulf.htm Defense Department’s Gulflink: www.dtic.dla.mil/gulflink/ Chronic Illness Research Foundations Persian Gulf War Syndrome Page: www.chronicillnet.org/PGWS/ Gulf War Veteran Resource Pages: www.gulfwar.org/