Guest guest Posted July 24, 1999 Report Share Posted July 24, 1999 Hi, I am reposting this in two parts, I often forget that AOL limits their message length. Hope all on AOL can get it now with out a problem. Marta (NJ) >While Lyme disease runs rampant, the medical community gets caught up in a >power struggle. >By Stefanie Ramp >Having Lyme disease is like being a demon-possessed 90-year-old with the flu >and a hangover. At least that's how Lyme sufferer and activist >Montes explains it. While his experience with Lyme has been more horrific >than most, his story is echoed by many tortured by the later-stage >complications of the disease. > >Montes' troubles began with a bite from a deer tick, which infests the >Northeast and transmits the bacterium responsible for Lyme disease. The tiny >tick, barely larger than the period halting this sentence, has spawned an >elaborately twisted power struggle that challenges the scientific, ethical >and moral pillars of the medical community. This acrimonious rift among >doctors often perpetuates and prolongs patient suffering, as was the case >for Montes. > >When diagnosed early, most Lyme cases are effectively treated with a >moderate dose of oral antibiotics. But diagnosing Lyme disease is the first >chasm severing the medical community; a conservative faction -- including >many Yale researchers and physicians -- believes the disease is >overdiagnosed and that Lyme detection tests should be relied upon for >diagnosis. The opposing faction believes diagnosis should be based primarily >on a patient's history and symptoms, with tests providing support. > >As Montes discovered, when Lyme goes undiagnosed, the later stages can be >brutally tenacious and, in the opinion of some doctors, incurable. Protocol >for late-stage Lyme engenders the second major conflict surrounding this >disease: whether patients are experiencing a persisting infection or merely >persisting symptoms (caused by the body's lingering inflammatory response to >the disease). The medical community, therefore, disagrees on how to treat >it. > > > >--------------------------------------------------------------------------- - >---- > >Before Lyme irreversibly scarred his life, Montes was an avid rock-climber, >fisherman, runner and outdoorsman. Most days now, he's accomplished >something if he can make it through a full day's work as a psychologist >working for the community services office of New Britain. > >A tick bite in 1987 seems to have caused what has now been more than a >decade of illness for Montes. He was treated with a short course of >antibiotics for the bite and had no immediate symptoms. But after a couple >of years, a seemingly random set of problems began plaguing him. Heart >palpitations, joint pain, sore ears and jaw, dizziness, panic attacks, >flu-like symptoms, severe headaches, light and sound sensitivity, depression >and staggering fatigue sent him befuddled to his doctor in 1993. > >Eight different doctors made nine different diagnoses: everything from >allergies to post-concussive syndrome. Over the next several months, Montes >even had two unnecessary root canals. To date, he has seen more than 20 >doctors for Lyme-related diagnosis and treatment. > >In hindsight, he suspects he suffered another tick bite during a trip to >tick-infested Nantucket in July 1993 and became reinfected with Lyme, along >with a secondary tick-borne illness, babesiosis, for which he tested >positive last year. " I started to have thoughts that were not my own, " he >says, " intrusive thoughts that were violent, homicidal, suicidal. " > >Finally, in November 1993, Dr. Virginia Bieluch, co-chief of infectious >disease at New Britain General Hospital, treated Montes for Lyme. When >therapy begins, the disease sometimes intensifies before subsiding. " It was >Thanksgiving Day 1993 and I just wanted to die, " Montes recalls, shuddering. > " If you had a gun that day, and you said, 'I'm going to put it to your head >and I'm going to pull the trigger,' I would have said, 'The sooner the >better -- please do it.' " > >But on the 17th day of antibiotics, Montes had a brief reprieve and felt >good for the first time in months. Although fleeting, it fueled his faith in >a recovery, and he sought out Dr. Phil Watsky, an internist in Bristol known >for his work with Lyme patients. After Watsky treated Montes with several >more courses of oral antibiotics to no avail, he prescribed a six-week >course of IV antibiotics. " My life came back, " Montes exclaims. " It was >amazing, just amazing. " > > > >--------------------------------------------------------------------------- - >---- > >For patients like Montes who continue to suffer from Lyme symptoms even >after standard treatment, long-term antibiotic therapy offers the best hope. >But the conventional wisdom, among the more conservative medical faction, is >that Lyme rarely requires IV treatment, and never long-term. Because of the >traditional treatment guidelines, insurance companies have refused coverage. >(In Connecticut, at least, many of these patients got good news when the >legislature passed a law this year mandating coverage of extended antibiotic >treatment.) > >Instead of what should be a cooperative and scholarly quest for the truth, >politics, power and greed have polarized medical professionals, creating >what one doctor calls " an all-out war. " > >Biologically speaking, Borrelia burgdorferi (Bb), the spirochetal Lyme >bacterium, is an admirably crafty organism that can hide in its host's body, >escaping eradication and even detection. So most of the medical community, >including the Centers for Disease Control, agree that a diagnosis of Lyme >should not depend on positive tests. The most common tests are the ELISA and >Western Blot, both antibody tests measuring the body's reaction (or lack of >one) to Bb. Like many antibody tests, they may produce false negatives early >on. By the time a patient does test positive (and some patients never do) it >can be too late for simple and effective treatment. > >Although the CDC guidelines for reported cases of Lyme require positive >tests, the CDC itself clearly states that its criteria should not be used >for clinical diagnosis. Rather, the CDC says, Lyme should be diagnosed based >on a doctor's evaluation of symptoms and history, with the tests providing >support. The federal Food and Drug Administration's just-released summer >medical bulletin reiterates this belief. > >Without definitive diagnostic tools, a haze of confusion has settled over >doctors and patients alike, breeding misunderstanding and mistrust. >Diagnostic parameters for Lyme are merely the beginning of the rift caused >by this disease, which often obscures the more important issue of how to >treat it. > >According to several Lyme physicians, disagreements over Lyme treatment have >evolved from academic squabbles to active animosity, with some doctors >accusing their colleagues of everything from overdiagnosis to malpractice to >profiteering. > > " It's not an exaggeration to call it a war -- a war of ideas -- and there >have been casualties in the process, " says Dr. Liegner of Armonk, >N.Y. " People have been scapegoated. Careers have been, if not permanently >destroyed, seriously damaged. " Liegner notes that syphilis engendered a >similarly ferocious controversy around the turn of the century and that >spirochetal diseases seem to have had the innate power to spark chaos >throughout history. > >Nationally, more than 100,000 cases have been reported following the strict >CDC guidelines, according to the Lyme Disease Foundation, a national >nonprofit organization based in Connecticut. Some studies estimate that >nearly 2 million people have been infected with Lyme, costing society >approximately $18 billion. > >New York and Connecticut have the highest incidence of Lyme in the country. >More than 3,000 cases in Connecticut were reported and met the CDC criteria, >but the CDC admits that its numbers may account for only 7 percent to 10 >percent of actual cases -- potentially 30,000 to 45,000 last year in >Connecticut. > > > >--------------------------------------------------------------------------- - >---- > >Despite a substantial faction of proactive doctors and patients who believe >in long-term antibiotic treatment for chronic Lyme -- based on clinical >experience and a widening body of published research -- old habits are still >dying hard, particularly for tradition-bound academics at research >institutions like Yale. > >Yale set the protocol for Lyme treatment (generally, a relatively short-term >oral antibiotic therapy) in part because Dr. Steere, the physician >credited with first identifying the spirochetal disease now known as Lyme, >was on the Yale faculty. And Yale is still largely perceived as the beacon >of Lyme wisdom. > >Yale doctors have done a great deal of valuable research on Lyme. But many >observers criticize the old-school Lyme vanguard, primarily Steere (who has >relocated to Tufts-New England Medical Center) and his key Lyme associates >from Yale -- Dr. Schoen and Dr. Eugene Shapiro -- for clinging to >their conservative opinions and jealously guarding their presumed founders' >rights to the disease. > >With no definitive evidence proving or disproving the existence of chronic >infection, treatment must be based on an individual doctor's beliefs about >the nature of Lyme disease, anecdotal evidence and clinical experience. So >it's not so much the conflict of medical opinion that Yale critics take >exception to. Rather, it's what many perceive as the closed-minded arrogance >of Yale's most prominent Lyme doctors, who seem to exclude every possibility >save for those conceived by a Yale physician. > >Montes, for example, lost an appeal for insurance coverage after his case >was reviewed by Yale's Dr. Schoen. " They [Yale Lyme doctors] have this >attitude like, 'If we didn't diagnose it, it isn't real, " says Montes. " I >don't understand how, in the face of published research, they can refuse >other doctors' findings. " > >Carl Brenner, one of two patients on a National Institute of Allergy and >Infectious Diseases advisory committee on chronic Lyme, sees the medical >community on both sides as stuck. > > " You have a situation where people selectively call on data that agrees with >their position and ignore the data that doesn't. You can create a pretty >good case for either side of this controversy, " he says. " My interest is >simply to make sure that enough data gets gathered so that we can get some >momentum towards figuring what the true nature of this illness is. " > > Forschner, executive director and co-founder of the Lyme Disease >Foundation, suspects that potential legal liability may encourage some >doctors' resistance to the concept of chronic infection and underdiagnosis. > " If, in fact, these patients are chronically infected, and there's mounting >evidence that this is a possibility, some of these doctors who have been >going around obstructing patients' treatment -- literally going out of their >way to do that at times, and testifying for insurance companies, etc. -- are >potentially at risk for lawsuits. " > >In fact, attorney Ira Maurer has devoted his Westchester County, N.Y., >practice to Lyme lawsuits. Along with a multitude of malpractice suits, he's >also handling the cases of doctors whose peers have allegedly ostracized and >professionally injured them -- what Maurer terms a " witchhunt " -- because of >their aggressive diagnosis and treatment of Lyme. > > > >--------------------------------------------------------------------------- - >---- > >Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at Yale, does >not buy the notion of chronic Lyme infection or the need for long-term >antibiotics. > Quote Link to comment Share on other sites More sharing options...
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