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A MYSTERIOUS MALADY WITH BAFFLING ORIGINSBy Susan Duerksen UNION-TRIBUNE STAFF WRITER April 14, 1999 SAN DIEGO—During the worst years, she sprouted skin tumors and ballooning moles, and some days she couldn’t summon the concentration to pay the bills. Her husband was hospitalized with pneumonia and had trouble remembering his address. Her children were covered with sores and rashes. The whole family repeatedly suffered from high fevers, wracking coughs, painful joints, exhaustion and various unexplained ailments. The family dog and two cats also started coughing, and died. That was before Carol (her name has been changed) discovered doxycycline, the antibiotic now being tested by the U.S. government as a possible treatment for Gulf War illness. The North County couple—who feared repercussions if their real names were revealed—consulted with biochemist Garth Nicolson about five years ago and began taking doxycycline on his recommendation. All four family members improved on the drug, she said, but they still must get new prescriptions every few months when the symptoms return. "None of us have been completely cured from it, but we have learned to manage it," she said. Carol said her husband, a 30-year-old former marathon runner who never even got the sniffles, came home from the Gulf War in 1991 sick and disoriented. "When he came home, within three days I knew something was wrong. He justcouldn’t think," she said. "There was a time when I wouldn’t let my children go with him in the car, because I didn’t know if he’d remember where he lived." A Navy officer, he left the military and took an office job, which still exhausts him completely, she said. She and their two young children also got sick shortly after he returned home, although her husband was hardest hit. "My family got sick from my husband," Carol said. "We’ve had all the symptoms." She also is certain that her family has spread the illness to some friends and relatives. But she has tired of trying to tell them so and being ridiculed. "As soon as you talk to people about this stuff, they look at you like you’re a wacko," she said. "People don’t want to understand it. Ignorance is bliss." The U.S. Centers for Disease Control and Prevention has identified 35 symptoms associated with Gulf War illness. Grouping the major symptoms into three categories—fatigue, mood/cognition and musculoskeletal—the CDC researchers developed a working definition for diagnosing the illness: having at least one chronic symptom from at least two of the categories. In a survey of 3,700 Air Force veterans published last fall, the CDC found that 45 percent of those who had been deployed in the gulf met that definition, as did 15 percent who had not been to the gulf. The researchers termed the condition "chronic multisymptom illness." They noted that it "is accompanied by significant decreases in functioning and well-being." The most common symptoms, which usually lasted more than six months, were: sinus congestion, headache, fatigue, joint pain and stiffness, difficulty remembering or concentrating, difficulty sleeping, abdominal pain and bloating, trouble finding words, irritability, rashes or sores, numbness or tingling, muscle pain, depression, diarrhea, sore throat and cough. One San Diego couple, Sean and Leslee Dudley, say they had all those symptoms and more. As many Gulf War veterans have anecdotally reported, they complained of vision problems and extreme sun sensitivity, as well as mental incapacity. "We didn’t have brains," Leslee Dudley said. "It was terrifying, to be that mentally helpless." Testing by Nicolson showed that the Dudleys, like Carol and her husband, both were infected with the bacterium Mycoplasma fermentans, which the military is now investigating as a possible cause of Gulf War illness. And both got better on doxycycline. But neither of the Dudleys was ever anywhere near the Persian Gulf. They believe they caught Gulf War illness from Marines who frequented the Cousins Warehouse store where Sean worked, around the corner from the Marine Corps Recruit Depot on Pacific Highway. And, since they got sick a year before Desert Storm, they believe that the Marines were infected beforehand through contaminated or experimental vaccines. That theory raises hackles among scientists studying Gulf War illness, who say that vaccines are screened for mycoplasmas and that there is no evidence of widespread illness among military personnel before the war. Still, the Dudleys have become outspoken advocates for increased research into the baffling condition. Two years ago, they started a registry of people who have mycoplasma infection and the symptoms. The list now is up to 900 names, about a third of them from the San Diego area, they say. Only 16 percent are Gulf War veterans and their families. "We have lawyers, musicians, waitresses, receptionists," Leslee Dudley said. "Most are too sick to be working anymore. Some are homeless. It’s slowly going through our communities and everyone is just quietly dropping out." Christian Heineke of San Diego has been extremely ill since he returned from the gulf in 1994 but said he hasn’t passed the disease to his girlfriend, roommates or anyone else. However, Heineke believes that he may have caught it from Marines with whom he worked. He was never on the front lines; he spent three years as a welder on a Navy ship docked in Saudi Arabia during and after Desert Storm. He fought exhaustion and other mysterious symptoms the whole time, he said, and spent six months in bed when he returned. "It makes you feel like hell every day," he said. "You just don’t feel like you even want to live. I was developing arthritis and I was only 23. I couldn’t surf, I couldn’t lift weights, it felt like all my joints were on fire." VA doctors said he was depressed and offered Prozac. Instead, Heineke went to Mexico and bought the antibiotic doxycycline, which he had heard that other veterans were using. He improved, found a part-time job as a nurse’s aide and got insurance coverage and a prescription for the antibiotic. He has been taking it every day for 21/2 years. "The days I don’t take it are the days I get sick," he said. "I’m much better now. I have my strength back and most of my memory has come back. I still get asthma and bad joint pain." Carol said her family also is beginning to accept that their lives are permanently changed by the illness. "We have to face the fact that we’re never going to be the same," she said. "Our minds don’t work the same as they used to; it’s like if you got old real quick." "It’s a nightmare. And it hasn’t ended yet." © Copyright 1999 Union-Tribune Publishing Co.
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