ILLNESS FROM THE GULF / SEVEN YEARS LATER, A VETERAN AND HIS FAMILY APPEAR TO BE INFECTED WITH THE SAME ILLNESS
By Norm Brewer and John Hanchette of Gannett News Service
As recently as 1991, not long after the Persian Gulf War, SSgt. Robert Jones still was a skilled tennis player. In 1994-1995, his wife, Deborah, still had the energy to win teacher-of-the-year honors in her elementary school.
"We were the Kool-Aid mom and dad of the block," Deborah Jones said, recalling the parade of neighborhood youngsters who came by to play with their three children.
No more. Their days now are spent coping with the pain from multiple illnesses that have been tied to his service in the Gulf War. Tending to their medical needs while sharing care of the children is about all they can handle.
Their comfortable, three-bedroom house on the outskirts of Fayetteville -- not far from Fort Bragg, where Robert Jones is on medical leave -- often is darkened, blinds drawn, lamps off. Their eyes are sensitive to light.
Four times a day, Deborah gets out a couple of shopping bags filled with prescriptions, carefully making two piles of pills so they don't get confused about what they have taken. Then they wash the pills down one or two at a time, like a beer drinker popping peanuts at a bar.
"We're not going to live long," Deborah says, matter-of-factly, her days in front of a room full of active young minds long since a memory.
They are hopeful they can raise their children -- Erika, 14; Ian, 10; and Star, 4 -- but have adjusted to precautions few must take.
The main threat is crowds. When they cannot avoid them, they pull on white inhalation masks. They stay out of the sun; even on the hottest summer days they must avoid the swimming pool and its chlorinated water.
For more than a year -- after seeing symptoms of the illnesses in their children -- the Joneses have avoided sharing a drink from the same glass or a nibble off the same fork. By that time, Deborah's rectal bleeding had worsened, and twice last fall 20 pounds melted from her already slim frame. And she had her 13th root canal in recent years.
"It's like I'm rotting from the inside," she said.
Robert Jones' heartbeat was at 100 when at rest. When he moved around he feared a heart attack. He had started getting lost in his own neighborhood -- a particular problem because Deborah usually was too sick to taxi the children about.
Robert's pain, particularly his headaches, were worse. The morphine both of them swallowed wasn't doing its job.
Deborah had struggled to complete a master's degree, then had to give up her job. When they ran out of money, their church helped pay some utility bills. In December, the Joneses took out a $35,000 second mortgage to get their finances squared away.
About the time Social Security approved disability payments for Deborah, the Joneses made arrangements to see a Los Angeles-area doctor, William Baumzweiger. He ordered extensive laboratory tests, then put them on medication. While the medicines have not cured them, they are feeling better these days.
Fires, vaccines, sand suspected
Jones doesn't know what in the Gulf War made him sick. Jones, an artilleryman, said he spent 45 days in the smoke of burning oil fields. When allied engineers blew up Iraqi bunkers, perhaps housing chemical weapons, Jones' unit was close enough that "we felt the ground shake beneath our feet."
He took now-suspect vaccines and pills for protection against possible nerve-agent exposure. He was involved in a couple of firefights when radioactive munitions were flying about.
He sent home a box of souvenirs. Sand samples from Iraq, Kuwait, Saudi Arabia; Iraqi helmets and dirty uniforms his son Ian was quick to put on.
Deborah Jones recalls sand all over the floor. Robert worries about reports that Saddam Hussein ordered widespread spraying of biological warfare agents in the desert.
Now, seven years later, Deborah said Gulf War illnesses have "totally ruined our lives."
But something else gnaws at her husband. A government he feels has failed to make a serious effort to find out what made them sick, and has done far too little to make them well again.
"I've represented the country well, and the people who are doing this have truly let us down," he said bitterly.
In particular, Jones' anger and frustration deepened over what he saw as the military's failure to identify medical problems that beset him and his wife after he returned from the war.
Now Baumzweiger, a civilian neurologist, reports that private laboratory tests confirm the Joneses suffer from a multitude of abnormalities the military -- including doctors at Walter Reed Army Medical Center in Washington, D.C. -- had failed to identify.
"I never knew I had all these viruses in me until we got all these lab tests back," said Robert Jones. "Why weren't (Walter Reed doctors) able to tell us this stuff? I think they would rather let us die off."
Possible proof of transmission
When the Joneses sought help from Baumzweiger in March, tests by two independent labs showed the couple's immune systems are seriously impaired. The private lab data may be the strongest public evidence to date that Gulf War illnesses perhaps can be transmittable within a family.
Baumzweiger, as the Jones' private physician, said the case shows the need for a national diagnostic research project on a large number of Gulf War veterans and their families. Dr. Howard Urnovitz, a Berkeley, Calif., microbiologist who has done extensive research on Gulf War illnesses, said upon reviewing the Jones' lab results that the couple is "probably very sick."
However, Urnovitz -- science director of the Chronic Illness Research Foundation -- added, "I don't think this is going to prove anything right now."
The Jones case, he said, is "developmental work" that demonstrates why the government should be underwriting research to produce a single test to confirm that a veteran's illnesses were triggered during the Gulf War.
"We've had trouble (researching) Gulf War Syndrome because people denied it existed," he said. "Now we're past the denial stage, but we still don't have a 'marker.' "
Army medical officials -- at the Pentagon, Walter Reed and Fort Bragg -- declined repeated requests to be interviewed about the Jones case.
But the couple is well-known throughout the military establishment. The Joneses persistently complained to North Carolina's Republican senators -- Lauch Faircloth and Jesse Helms -- that their medical medical care has been cursory. Also, they charge, their nine separate illness-reporting contacts with the Pentagon's Persian Gulf Incident Reporting Line invariably were answered by form letters that did little more than assign an identification number.
Help from the Pentagon
Bernard Rostker, the Pentagon's special assistant for Gulf War illnesses, in February wrote the senators to assure them he had provided for special attention to the Joneses -- from a primary-care doctor at the Womack Army Medical Center at Fort Bragg, from a social worker, and from a mycoplasma specialist at a nearby university. The Joneses insist help from the social worker and the mycoplasma expert never materialized.
After inquiries to the military by Gannett News Service, Baumzweiger said he was asked by Peter Cardinal, the couple's doctor at Fort Bragg, to send a detailed plan for treating the couple.
Baumzweiger was let go by the Department of Veterans Affairs a year ago for insisting on treating sick gulf veterans over the objections of his superiors.
And the Pentagon had refused a recommendation by Cardinal that the military pay for the Joneses' trip to California. A woman friend of Deborah's paid for the trip.
The couple and their daughter, Erika, however, became the first family to go through a Specialized Care Program at Walter Reed last summer. The program is a partial in-patient, three-week course of medical treatment, physical training and psychological education. It follows extensive medical testing, and participants are urged to continue seeing primary-care doctors after they leave the program.
"There is no cure for the illnesses," said Nancy Bitsko, a nurse at Walter Reed. "This program is a chronic-symptom management plan. Our goal is to try to return these vets to their highest physical capacity."
The Joneses contend military doctors did little more than confirm symptoms that long had tormented them.
Walter Reed has accepted an outside diagnosis of mycoplasma fermentans -- a bacteria-like microorganism that can attack suppressed immune systems. The hospital's program listed ways to cope with their illness, the couple said -- including one session on caring for the dying and a trip to Arlington National Cemetery with the theme of "coming to terms."
"I didn't think it was appropriate to take sick people to a cemetery," Robert Jones said. "It made me pretty irate."
No evidence of transmission
The Walter Reed team, led by Dr. Charles Engel, also did not address the Joneses' growing concern that their three children were becoming symptomatic. "I was in great pain," Deborah recalled. "I was bleeding from both ends. I begged them. I told them we were dying. They just looked at us and said nothing."
Maj. Tom Gilroy, spokesman for the Pentagon's Gulf War illness investigative effort, said there is no evidence of illnesses being transmitted within a family "other than what you would find in the general population, like influenza or things like that."
He noted the federal Centers for Disease Control and Prevention in Atlanta a year ago announced "they were not aware of any scientific evidence that Gulf War illnesses are caused by infectious agents."
Help from the private sector
After leaving Walter Reed, the Joneses decided their worsening health made it imperative they find help outside the military. Deborah's rectal bleeding had reached the stage of gross hematuria. Robert's white blood cell count was abnormally high, his headaches becoming unbearable: "My brain would feel like it was on fire sometimes."
By March they were seeing Baumzweiger. He ordered lab tests that showed they shared many of the same viruses and fungi; both had inflamed brain stems and depressed immune systems, including abnormal lymphocytes that help identify invading organisms; and both had abnormal blood gasses.
"It's like two people having the same fingerprints, and that just doesn't happen," Jones said.
The tests also showed Deborah has a poorly functioning pituitary, the gland that secretes hormones crucial to efficient body functions. Jones and his wife already were on heavy doses of antibiotics. Baumzweiger continued that. But the couple takes nearly 20 other medications -- notably to combat inflammation of the brain, viruses, fungi and Deborah's kidney and colon problems.
After a month, they said, they felt better. But they never expect to lead completely normal lives.
Copyright 1998 Army Times Publishing Company. All Rights Reserved.
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