Army Times
Published: 05-04-98
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
FAYETTEVILLE, N.C.
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.
Making adjustments
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.