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Subject: Fw: San Diego Union-Tribune: Antibiotic May Defeat Gulf War Syndrome-4 articles, 4/14/99
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Datum: zaterdag 8 januari 2000 16:10
Onderwerp: San Diego Union-Tribune: Antibiotic May Defeat Gulf War Syndrome-4 articles, 4/14/99 Mycoplasma Registry for gulf war illness & chronic fatigue syndrome
Sean & Leslee Dudley
303 47th Street, J-10
San Diego, CA 92102-5961
tel: 619-266-1116 fax: 619-266-1116 or 917-463-4271 e-mail:
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FRONT PAGE OF THE SAN DIEGO UNION-TRIBUNE APRIL 14, 1999

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VETERANS SET TO BEGIN TRIALS OF MEDICATION HERE, ACROSS U.S.
By Susan Duerksen
UNION-TRIBUNE STAFF WRITER
April 14, 1999

SAN DIEGO -- Eight years after the Persian Gulf War, the government is about to start testing a simple antibiotic as a possible cure for the mysterious health problems plaguing many veterans of that conflict. Ailing veterans in San Diego and across the country will receive the antibiotic in a major scientific trial, based on the theory that bacterial infection may cause at least some cases of the so-called Gulf War syndrome. Specifically, the researchers will be looking for strains of a very small, little-understood type of bacteria, called mycoplasma.

A MYSTERIOUS MALADY WITH BAFFLING ORIGINS

MOVING FAST

In this case, the researchers say, political and public pressure has speeded up science, so that a potential treatment and cause are being tested at the same time. "We want this study done quickly," said Dr. Sam Donta, an infectious disease specialist at the Boston Veterans Affairs Medical Center who is heading the study. "If it works, it will spawn additional studies." And if it doesn't work, that won't necessarily eliminate mycoplasmas as the cause, Donta said. "We may not have the right drug or the right dose. You've got to start someplace." Nicolson said the official study of his methods is long overdue and may not be designed well enough to find accurate answers. "As a first step, it's OK," he said. "I'm not entirely satisfied with it. I have concerns about the statistical analysis." A former department chairman at a renowned cancer research center in Texas, Nicolson has a role in the government's study. He taught the researchers the technique he developed for finding mycoplasma in blood, and he will recheck their results on 10 percent of the blood samples tested. Only veterans who test positive for mycoplasma can participate in the antibiotic study. Others who are sick probably are suffering from other infections or toxic exposures, Nicolson said. He believes those same factors, along with the multiple vaccines given before deployment, could have weakened some troops' immunity enough to let mycoplasma infection take hold. The organism may have been present in the gulf either as a biological weapon or as a normal part of the bacterial stew carried in some people's respiratory tracts. It can ride there harmlessly unless impaired immunity allows it to infect the blood system, one theory goes. Nicolson believes M. fermentans is an airborne bug and "moderately contagious," striking mostly at people with weakened immune systems. Some species of mycoplasma are known to be transmitted in saliva or through coughing and sneezing, and there's some evidence that fermentans may be spread in similar ways, said Joseph Tully, chief of mycoplasma research for the National Institute of Allergy and Infectious Disease in Bethesda, Md. However, he said the evidence is not yet strong enough to warrant concern about an epidemic. "At this point, I don't think that's a real risk," Tully said. "But I tell people, I just don't know."

VETERAN'S VIEWS

Among many veterans' families and advocacy groups, there is no doubt the illness is contagious. Joyce Riley, an Air Force Reserve nurse from Missouri, tracks more than 10,000 sick Gulf War veterans through the American Gulf War Veterans Association she founded five years ago. She said at least 80 percent of them have family members who also are sick enough to seek medical treatment. "We know it's communicable," Riley said. "We're very concerned about the spread of this disease." But Engel said relatively few family members have sought care at VA and military medical clinics. The family members who are sick could have chronic fatigue syndrome, or fibromyalgia syndrome, two other disorders with very similar symptoms, he said. The VA now is trying to determine whether those families have more such disease than the general population. One major VA study is exploring whether the illness has spread to veterans' spouses and children, but results are not expected for another two years, said Timothy Gerrity, the VA's chief research and development officer. The antibiotic study starting this month will include 450 Gulf War veterans who test positive for M. fermentans. Half of them will take doxycycline daily for a year, while the other half will take a phony pill, or placebo. No one will know who is taking which until the study is over. All participants will be retested for mycoplasma infection after six months, again after taking the drug for a year and once again six months after they finish the drug. Donta said he also hopes to give doxycycline to a smaller group of veterans who are sick, but don't have mycoplasma infection. If they get better, the problem could be one of the many other micro-organisms vulnerable to the antibiotic. Doxycycline, a member of the tetracycline family, is among the most commonly used antibiotics, said Dr. Gregory Gray, of the Naval Health Research Center on Point Loma, who is leading the study locally. He said many people take it for years at a time to treat acne. It may be difficult to get veterans to sign up for the study, the researchers admitted, because many can get doctors to prescribe doxycycline for them and they may not want to risk the 50 percent chance of wasting a year on a placebo. "We'd like to appeal to veterans on behalf of the larger veteran community," Engel said. "This is a unique opportunity for them to provide scientific information regarding a treatment that is potentially helpful to other veterans."

ANOTHER APPROACH

The second study starting this month will test whether exercise and "cognitive behavioral therapy" -- either separately or in combination -- can ease the veterans' symptoms and improve their physical functioning. The study will involve 1,360 veterans, including an expected 68 in San Diego. Some will undertake an aerobic exercise program, some the cognitive therapy, some will get both and some neither. Engel, a psychiatrist and epidemiologist, said he has been using both types of therapy at the Walter Reed center for four years. He said the patients generally have "a very slight reduction" in physical symptoms and a greater reduction in their distress. "Most Gulf War veterans come here very actively concerned about many health issues," Engel said. "The concern they have . . . is becoming one of the more debilitating aspects of their illness." Cognitive behavioral therapy uses relaxation techniques, guided imagery to relax muscles and patients are gradually encouraged to resume activities they believe they can't do, Engel said. "We're not trying to tell them this is in their head," he said. "Rather than reassuring them, you help them design their life." In the next few weeks, notices are expected to be mailed to many veterans and veteran organizations, seeking volunteers for both studies. The local Naval Health Research Center has set up a special phone line for interested veterans to call, (619) 524-0069. Eligible veterans can choose which study they want to take part in, Gray said.

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© Copyright 1999 Union-Tribune Publishing Co.

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GERM OF AN IDEA FINALLY, THE MILITARY IS FOCUSING ON A LIKELY CAUSE OF GULF WAR SYNDROME

By Susan Duerksen
UNION-TRIBUNE STAFF WRITER
April 14, 1999

SAN DIEGO -- Lean, mean and evasive as a stealth fighter, a stripped-down, parasitic mini-bacterium has emerged as a prime suspect in the disabling illnesses that continue to dog veterans of the Persian Gulf War. Prodded relentlessly by one very determined biochemist, the military and the Department of Veterans Affairs are spending $8 million to test whether Gulf War illness can be cured with antibiotics and whether it may be, at least in part, caused by a barely known species of an exceedingly tiny bug, Mycoplasma fermentans. If the treatment works and the mycoplasma disappears from treated veterans' blood, the study may solve a highly controversial medical mystery that has dragged on for eight years. The results also may have profound implications for a number of other infectious diseases. Mycoplasmas, a large family of the smallest and simplest bacteria, have been known for decades to cause some plant and animal diseases. Some strains have been implicated in a variety of human disorders -- including AIDS, rheumatoid arthritis and infertility -- but the bug is so tricky to find that proof is scarce. In the last five years, Garth Nicolson, a biochemist based in Huntington Beach, has brought the species Mycoplasma fermentans to the forefront of the search for what ails more than 100,000 Gulf War veterans. Since his stepdaughter returned ill from service in the gulf -- and he then became sick himself -- Nicolson has tested the blood of hundreds of sick Gulf War veterans and their families. He reports finding M. fermentans in 45 percent of the veterans tested, compared with fewer than 10 percent of healthy people. Among family members who share the veterans' symptoms, almost all have the microorganism in their blood, he says. The sick veterans who aren't infected with mycoplasma probably are suffering from chemical exposures or other infections, Nicolson believes. In many cases, he said, multiple infections and toxic exposures work along with mycoplasma to overburden the immune system and produce the collection of symptoms known as Gulf War syndrome. Those symptoms -- joint and muscle pain, extreme fatigue, memory loss, rashes and many other problems -- are shared, in differing proportions, with chronic fatigue syndrome and fibromyalgia, two illnesses of unknown cause. Nicolson said he finds M. fermentans in 60 percent or 70 percent of people with those diagnoses who come to him for testing. "There's no such thing as Gulf War syndrome -- there's no distinct syndrome," he said. "We have millions of civilians with similar symptoms." If his theory is right, how did so many Gulf War veterans become infected with mycoplasma at once? That's where Nicolson makes other scientists nervous: He believes that the organism was used as a biological weapon and may also have been contained in vaccines given to soldiers, either through accidental contamination or inept experimentation by the U.S. military. Military scientists say there is no evidence that biological weapons were used or that vaccines were unsafe. Another possibility, more plausible to bacterial experts, is that the toxic exposures and other stresses of warfare lowered soldiers' immune resistance enough that mycoplasma, normally dormant in some people's respiratory tracks, became actively infectious and then spread among the troops. "We think that there were multiple sources of Mycoplasma fermentans," Nicolson said. "It doesn't matter; they've got it. Let's treat it." And Nicolson believes he has found an effective treatment, the antibiotic doxycycline. He said three-quarters of veterans with M. fermentans infection recover fully after lengthy treatment with doxycycline or other antibiotics. And, with treatment, the mycoplasma vanishes from their blood. Other scientists are suspicious because most of Nicolson's results have not been duplicated in other researchers' tests and have not been published in the most reputable scientific journals. But they are intrigued enough -- as are members of Congress who pushed through funding for the study -- to not only test his theory but immediately begin testing his treatment. "I think you'd have to believe it's probably more real than not," Dr. Sam Donta said of the mycoplasma theory of Gulf War illness. "We can't just keep waiting for more and more evidence while people continue to suffer." Donta, an infectious diseases specialist at the Boston Veterans Affairs medical center, is leading the $8 million national antibiotic treatment study for the VA and the Department of Defense. The Naval Health Research Center in San Diego is one of 30 centers that hope to each sign up 15 veterans for the study. The participants' blood samples will go to Joel Baseman, chief of microbiology at the University of Texas Health Sciences Center in San Antonio, for mycoplasma testing before and after they take antibiotics for a year. "This theory is without enough substantiated proof and, on the other hand, it's very provocative," Baseman said. "This is certainly a leading theory . . . a hypothesis that really needs to be clarified. I'm excited about it." However, there is some evidence discrediting the theory. Dr. Shyh-Ching Lo, chief of molecular pathology at the Armed Forces Institute of Pathology in Washington, D.C., tested veterans' blood when Nicolson first proposed the idea in 1994, and found M. fermentans in only 1 percent, the same rate he found in non-veterans. Nicolson argues that Lo's testing technique is not sufficient to find the organism inside cells. The VA study will use Nicolson's method. Lo has been arguing for 10 years that M. fermentans plays a role in AIDS, but he does not believe that the microbe causes Gulf War illness. The culprit, he said, might be an as-yet-undetected species of mycoplasma. "Mycoplasma infection potentially can cause all different kinds of mysterious symptoms . . . often chronic, debilitating illness," Lo said. "It sounds like a good candidate, but we have to see some evidence."

THE VAST UNKNOWNS

The idea that a bacterium could cause the chronic illnesses of Gulf War veterans fits with what Baseman calls "an infectious disease rebirth" now under way. In recent years, bacteria increasingly have been accused of causing diseases previously considered non-infectious; one bacterium is now known to cause ulcers and another looks guilty of promoting atherosclerosis, the clogging of arteries in heart disease. Mycoplasmas are among the most streamlined of bacteria, nearly as small as viruses. The tiny organisms don't even have a cell wall, just a thin outer membrane. They burrow inside cells, where they are tough to find and tougher still to fight. Previously considered primitive and not very dangerous, they now are thought to be all the more sinister because of their simplicity; they lack many of the ingredients needed for replication and must scavenge them from inside cells. "It forces them to be very sophisticated pathogens, because they need the host cell completely in order to survive," Baseman said. In addition, mycoplasmas' simplicity helps them to evade antibiotics. The drugs normally kill bacteria by targeting certain molecular processes -- such as cell wall development -- that most bacteria have, but that mycoplasmas do not. Mycoplasmas simply use the apparatus of the cells they invade rather than carrying around their own, making them very slim targets. For that reason, antibiotics can only slow the parasitic organisms, leaving it up to the immune system to finish them off, said Joseph Tully, chief of the mycoplasma lab at the National Institute of Allergy and Infectious Diseases, a part of the National Institutes of Health. That makes mycoplasma infection particularly dangerous for anyone whose immune system is weakened by disease or, as in transplant cases, must be held in check with drugs, Tully said. Exactly how mycoplasmas damage cells once they are inside -- whether they excrete toxins, steal the cell's nutrients, trigger autoimmune reactions by mimicking the cell wall or all of the above -- isn't well understood. Scientists who have spent much of their careers studying mycoplasmas believe that they are just beginning to discover what harm the organisms can do. Those discoveries have been easier in recent years because of the development of a diagnostic technique called polymerase chain reaction (PCR). It is used to find and amplify genetic traces of the organism, which is very difficult to culture and grow to measurable amounts. The evidence to date is sketchy but sobering: In 1989, Lo and colleagues at the Armed Forces Institute of Pathology fingered M. fermentans in the mysterious deaths of six previously healthy adults from different geographic regions who had developed flulike symptoms and died within a few weeks. The pathologists found the microorganism in many of the victims' internal organs and could not find signs of any other type of infection or disorder. Some prominent AIDS researchers believe that M. fermentans paves the way for the human immunodeficiency virus to cause AIDS, and may even be a necessary accomplice. A decade ago, Dr. Luc Montagnier, a French scientist who first identified the human immunodeficiency virus, announced that theory and fought for several years to have it tested. Lo reached the same conclusion as Montagnier when he found M. fermentans in the brain, blood and other tissues of AIDS patients but not in healthy people. He believes that attacking the mycoplasma with antibiotics could protect many HIV-infected people from developing AIDS. But no one has been able to get funding to study that theory, Lo said, because of stiff resistance from the many AIDS experts who believe that HIV is the sole cause and mycoplasma just a secondary, opportunistic infection. "We treat AIDS patients when they have (other) opportunistic infections," Lo said. "We believe the mycoplasma is pathological. . . . it needs to be diagnosed and treated. The HIV proponents say, 'It's just mycoplasma.' It's very absurd." Other researchers, since 1993, have found a new species, Mycoplasma penetrans, almost exclusively in the urine of HIV-infected patients, raising the possibility that it also may contribute to AIDS. In new research published last summer, Lo and a group of New Jersey doctors showed that the presence in the genital tract of another species, Mycoplasma genitalium, makes transmission of HIV from one person to another much more likely. The researchers compared 302 heterosexual couples in which at least one partner was infected with HIV. They found Mycoplasma genitalium more than twice as often among couples who shared the infection as among those in which one partner resisted infection over several years. Many other potential variables were tested; herpes infection was the only other difference that seemed to increase the risk of transmitting HIV. Again, Lo believes that antibiotic treatment for people infected with HIV could be a relatively easy way to control the spread of the virus. In 1996, researchers in London verified an idea first suggested in 1970, that M. fermentans is present in the joint fluid of at least one-fifth of rheumatoid arthritis patients tested. Several other studies now have shown that those patients improve and the swelling of their joints diminishes when they are treated with antibiotics known to inhibit mycoplasma, said Tully, the NIH mycoplasma chief. "I think it is a cause of arthritis," Tully said. "It's not there (in the joints) normally." Nicolson and his colleagues also found at least one -- and usually more -- species of mycoplasma in the blood of about half of rheumatoid arthritis patients they tested. The results are expected to be published next month in the British Journal of Rheumatology. There also is evidence, Tully said, that mycoplasmas may cause infertility in some people by infecting either sperm or ova. Mycoplasmas are known to cause infertility in many animals, a problem first discovered in bulls, he said. Infertile couples should be tested for the bacteria and possibly try a course of tetracycline-like antibiotics before they embark on expensive fertility treatments, Tully said. Mycoplasma infection has become a serious threat for transplant recipients, who must take drugs to suppress their immune systems so they will not reject the transplanted organs, and for other people with genetically deficient immune systems. Even "bucketsful of antibiotics" can't completely kill mycoplasmas without the help of immune defenses, Tully said. In several cases published in scientific journals, children and adults with suppressed immune systems have needed years of multiple high-dose antibiotics to control mycoplasma infections. With their defenses down, some have become infected with strains they had carried as part of the normal human bacterial mix and some with animal strains they acquired when bitten or licked by cats or dogs. In 1996, doctors in Denver reported that two lung transplant recipients became infected with mycoplasma carried in the tissue of a donor lung. They each had received half the lung. Both survived, with long-term antibiotics. Starting in 1995, Nicolson and Dr. Darryl See, an immunologist formerly at UC Irvine, have separately reported finding high levels of M. fermentans in the blood of chronic fatigue and fibromyalgia patients. Last year, Nicolson reported at a chronic fatigue conference in Australia that he had found M. fermentans in 41 percent of 203 chronic fatigue and fibromyalgia patients and other mycoplasmal infections in an additional 30 percent, while 32 healthy control subjects had no such infections. Some chronic fatique patients have reportedly taken the antibiotic and gotten better, but Nicholson said he has not followed their cases systematically. A Beverly Hills company, Immunosciences Lab Inc., published a study last year finding M. fermentans in 32 of 100 chronic fatigue patients tested and in only eight of 100 healthy people. Lo, using a slightly different test, said he has not found significant amounts of M. fermentans in the blood of chronic fatigue patients he has tested. Mycoplasma fermentans was found in the bone marrow of children with leukemia in the 1970s, but a connection with the cancer has not been further established. In a 1995 study, long-term mycoplasmal infection in mice led to cellular changes that resulted in tumor growth. A species called Mycoplasma pneumoniae has been known since the 1960s to cause a relatively mild form of pneumonia, often called walking pneumonia, as well as other respiratory diseases. It is contagious through airborne particles. In addition, a number of animal and plant diseases have been traced to mycoplasmas. The microorganisms have killed palm trees and alligators. The first mycoplasma was identified in French cattle a century ago. Many insects have their own species of the bug, and some can spread it to plants. Insect transmission to humans has never been shown. Nicolson firmly believes that M. fermentans can be spread in airborne particles, and that it is most likely to infect people whose immune systems are stressed or genetically weak. That's plausible, other scientists say, but the evidence is not in.

GENETICALLY ALTERED

Nicolson reports finding a genetic alteration -- the addition of one gene from HIV -- in the mycoplasma he finds in Gulf War veterans but not in other people, such as chronic fatigue patients. Therefore, he believes that the organism may have been altered for use as a biological weapon. Other scientists scoff at that conclusion, partly because mycoplasma is too slow-acting to be very effective at disabling soliders on the battlefield. Nicolson, who has solid scientific credentials as former chairman of tumor biology at the prestigious University of Texas M.D. Anderson Cancer Center in Houston, shifted to mycoplasma research after his personal experience convinced him that Gulf War illness was contagious. His stepdaughter, Sharon, a helicopter crew chief in the Gulf War, returned home in 1991 and gradually became disabled with muscle, joint, vision and cognitive problems. When both Nicolson and his wife developed similar symptoms, he began looking for an infectious agent and experimenting with antibiotics. After months on an antibiotic called doxycycline, all three family members recovered. At first, Nicolson used a gene tracking technique developed by his wife, molecular biophysicist Nancy Nicolson, to identify M. fermentans inside cells. Now, he said he uses a method called forensic PCR, which he developed with another former University of Texas biochemist, Marwan Nasralla. Pressured by the university to halt his unorthodox work, Nicolson left Texas in 1996 and came to Orange County to found his own research center, the Institute for Molecular Medicine. Gulf War veterans and others with similar symptoms come to him from all over the country for mycoplasma testing, usually paying $400 to be tested for four species. Not a physician himself, he provides a list of doctors who are willing to prescribe doxycycline for the condition. Other scientists caution that the drug works against other infections as well, so its success does not prove mycoplasma's culpability in Gulf War syndrome. For that reason and others, they say, the new systematic, placebo-controlled study is urgently needed. Although results are not expected for at least a year, researchers said the study was moving very quickly by normal scientific standards because of the intense political interest. "People are willing now to examine mycoplasma more closely for possible associations with disease," study chief Donta said. "We know next to nothing about fermentans. It should be pursued."

© Copyright 1999 Union-Tribune Publishing Co.

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A MYSTERIOUS MALADY WITH BAFFLING ORIGINS

By 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 just couldn'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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LETTER TO THE EDITOR OF SAN DIEGO UNION-TRIBUNE (mailed but not published)

April 15, 1999

Dear Editor,

We wish to thank the Union-Tribune for its excellent articles on Gulf War Illness. Susan Duerksen did a great service for both military veterans and civilians who have this disease but have had no hope until now. We would like to thank Congressman Bob Filner for supporting the Nicolsons and for making sure the VA study went forward. Mr. Filner has been a leader in Congress on Persian Gulf War Illness and was honored as "Legislator of the Year" for his efforts on behalf of these veterans by the National Gulf War Resource Center. As the senior Democrat in the Veterans' Affairs Benefits Subcommittee, he is working to schedule a hearing this year in his Subcommittee on causes, treatments and compensation of Persian Gulf Illnesses. The VA study is a good first step. Our community needs to move quickly with private funding in order to stop this epidemic. Medical research, blood tests and medications are urgently needed by those people who will not be part of the study, including women, children and homeless Vets who go untreated and suffer needlessly. Drs. Garth and Nancy Nicolson performed an extraordinary breakthrough in finding one of the causes of Gulf War Illness, Chronic Fatigue Syndrome and Fibromyalgia. Their pioneering mycoplasma research needs San Diego's support to continue.

Sincerely,

Sean and Leslee Dudley

Mycoplasma Registry for Gulf War Illness & Chronic Fatigue Syndrome