8. Media articles about Lyme disease and fibromyalgia ************************************************************************ as of 5 May 1999 Published Monday, October 13, 1997, in The State [Columbia, South Carolina] Year-around precautions in order for disease "Vital Signs" is to be commended for the recent column on Lyme disease. More education is needed. Surveys at Fort Jackson in 1990 and 1991 found infected ticks. Lyme disease is a complex illness that can be devastating and costly if it is not treated. Lyme disease can mimic many illnesses, such as Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis, multiple sclerosis, etc. Unless a physician has accurate, up-to-date information, a misdiagnosis is very likely. In six years, the Lyme Disease Foundation hotline (800-886-LYME) in Hartford, Conn., received over 2,400 calls from South Carolina, while only 48 cases were reported to DHEC. The following are excellent books for everyone: Coping With Lyme Disease -- A Practical Guide to Dealing with Diagnosis and Treatment (Second Edition, 1997) by Denise Lang, and Everything You Need To Know About Lyme Disease (1997) by Karen Vanderhoff-Forschner. The public needs to be reminded often to take precautions year round. Early symptoms include any combination of the following: bullseye rash (usually at the site of tick bite), headache, flu-like symptoms (especially when it is not flu season), fatigue, stiff neck, pain in muscles or joints. These early symptoms usually disappear and serious multisystemic problems develop later, such as stroke, heart disease, arthritis, or problems with the eyes, ears, respiratory, digestive and neurologic systems. These complications can be devastating to the patients and the family, if untreated. When considering Lyme disease in South Carolina, keep in mind the warning of Dr. Edwin J. Masters of Missouri: "Absence of proof is not proof of absence!" CAROL B. BLACK Columbia System is overbuilt, not underfunded (10/13/1997) http://thestate.com/opinion/opletter/MON13LET.htm ----- Ticks pose health hazard to humans, pets By Pam Linn Associate Editor The Malibu Times September 4, 1997 "The CDC study indicated that Californians may have had their heads in the sand about the seriousness of tick-borne diseases on the West Coast. When Lyme disease was first brought to public attention in the late 1980s, early research reported that California tick infection rates were very low (0-2 percent). Although these estimates have now been revised dramatically upwards, many doctors still tell patients that Lyme disease doesn't exist here. Others think it is so rare that they won't treat people coming in with tick bites and symptoms. Few physicians bother to report their cases, so the numbers of Lyme cases reported are artificially low. Some Lyme patients are misdiagnosed with chronic, incurable diseases like rheumatoid arthritis, chronic fatigue syndrome, multiple sclerosis, and fibromyalgia, while others go to dozens of doctors before finally obtaining a diagnosis and effective treatment (antibiotics)." See complete article at: http://www.geocities.com/HotSprings/Spa/6772/california-media.txt ----- Champion Struggles with Lyme Disease From "The Burlington Free Press" (Vermont), 3/22/96 By Sam Hemingway List some of the best athletes who ever graced the Middlebury College campus and the name of cross country skier Tara McMenamy is bound to bubble up. In her four years there ending in 1982, McMenamy was a three-time All- American cross country skier, placing among the top 10 women at national championship meets in Marquette, Michigan, Lake Placid, NY, and Stowe. And that's only the skiing part of her portfolio. In 1981, McMenamy accomplished the rarity of being a two-sport All American with a 12th place finish at the national Division III cross country running championships in Kenosha, Wis. "She was tremendously dedicated, highly motivated, and very competitive, one of the top athletes I've had in 21 years here," said her coach, Terry Aldrich. "She was the kind of person you'd have run the first leg of a relay because she just would not let anyone get in front of her." So, then, how do you explain how this same woman, now Tara Sheahan and the mother of two, could just months ago lack the strength to grasp the steering wheel of her car? Or barely endure a five-minute walk? Or, worst of all, be accused by a doctor of not working hard enough at her physical therapy? "I wanted to punch the guy," Sheahan said, clenching her fist as she looked out the window of her Williston home. "I was so humiliated. I thought, 'God, you don't understand.' " Welcome to Lyme disease, or better yet, welcome to the mystery of Lyme disease. It can reduce even a person of Sheahan's documented physical ability and motivation to intolerable pain and depression - and still be misunderstood and misdiagnosed by doctors. Mystery, in fact, is putting it mildly. According to state and federal experts, 21 years after its discovery in Lyme, Connecticut, there is still no sure-fire test to detect it or medicine to cure people of it. What's more, as Sheahan found out, the tick that carries the Lyme bacteria and attaches itself to a person is often too small to be detected. And, finally, the disease can mask itself in symptoms that copycat other maladies. That also fits Sheahan's life story this past year - a series of symptoms including tendinitis, jaw pain, hair loss, earaches, mood swings, weight loss, sleeplessness, memory loss and depression that no specialist could explain. Her orthopedic surgeon advised more physical therapy and, later, electric shock. Her rheumatologist figured it was simply muscle hyperextension. Her gastroenterologist surmised it was fibromyalgia. But there was one thing all of them were sure of: It wasn't Lyme disease. "One doctor actually told me no, we don't have Lyme disease in Vermont," she said. But, ahem, we do. Adccording to state Health Department figures, Vermont has had 65 recorded cases, most of them "imported" from elsewhere - although that seems dubious since ticks don't wear license plates. Nationally, the number of recorded cases through 1995 is 80,206. Sheahan, who things she was bitten while raking her yard last spring, finally found out she had "LD" after traveling to Colorado for testing. Now on antibiotic medicines, she is finally feeling better. She's also convinced the disease is far more prevalent in Vermont than the numbers indicate and she might be right. As Gordon Nielson, retired University of Vermont entomologist, put it: "Rabies has got everyone flat out. The state is not as able to get as much out on Lyme disease because of limited resources." Sheahan said she wants to change that. Don't be surprised if she succeeds. After all, that's what champions do. Champion Struggles with Lyme Disease http://nr-atp.cit.cornell.edu/~joy/lymefreepress.html ----- Lyme Disease Up Close and Personal from "Drug Topics", the Newsmagazine for Pharmacists, November 20, 1995 (Cover story) Senior associate editor Katie Rodgers, R.Ph., learned about this enigmatic disease the hard way. . . . The Enigma of Lyme "Often called "the great imitator," Lyme disease can be a difficult infection to diagnose. The symptoms are vague and are frequently mistaken for other illnesses, such as multiple sclerosis, fibromyalgia, and chronic fatigue syndrome, among others. Although considered the hallmark of Lyme disease, the characteristic EM occurs in only 60% to 80% of Lyme cases, which can cause the diagnosis of Lyme disease to be missed." See complete article at: Lyme Up Close [NOTE: Link not available as of 1 June 1999] http://www.eci.com/torski/Lyme-KRodgers.html ----- SOMETHING OLD, SOMETHING NEW LYME DISEASE - DON'T LET IT HAPPEN TO YOU By Ron Ferris, Calgary , Alberta Ron Ferris has been a research assistant for the Vancouver Lyme Borreliosis Society for several years. He has spent nearly a decade learning about Lyme disease and has published numerous articles on this subject. This article appeared in the Calgary Herald, September, 1995 There's goods reason why Lyme has been called the New Great Pretender. Leading misdiagoses for LD include juvenile rheumatoid arthritis, rheumatoid arthritis, fibromyalgia, systemic lupus erythematous and chronic fatigue syndrome. Attention deficit disorders and mild to severe psychiatric disorders also have had Lyme as the actual underlying cause. See complete article at: LYME DISEASE - DON'T LET IT HAPPEN TO YOU http://www.x-l.net/Lyme/ferris.htm ----- From The National Lyme Disease Network LymeNet Newsletter Volume 1 - Number 02 - 2/05/93 SOURCE: Science Magazine ISSUE: Vol 257, September 25, 1992, p1845 [LETTERS THE EDITOR] HEADLINE: Lyme Disease: Asking the Right Questions (Ed note: This letter appeared as a follow-up to an article reporting on the controversy at the Fifth Int'l Conference on LD. At that conference, the organizers tried to remove certain abstracts that allegedly lacked "scientific merit." Pressure from patient groups had the abstracts re-instated. The offending abstracts primarily dealt with issues of chronic infection.) I would like to elaborate on some of the issues discussed in Marcia Baringa's article about the controversy at the Fifth International Conference on Lyme Borreliosis (News & Comment, June 5, p1384). The academic Lyme disease researchers would have us believe that there is a methodological conflict between their own studies and their clinician opponents' "anecdotal" findings. Nothing could be further from the truth. Although criticisms of the offending abstracts submitted before the conference were not entirely without merit, the presumption that the existing body of academic Lyme disease literature represents some sort of scientific ideal is ludicrous. The central flaw in the current Lyme disease orthodoxy is the persistent myth of "post-Lyme syndrome." This condition was suggested by researchers to account for the troublesome fact that many patients do not fully recover after supposedly curative antibiotic therapy, but continue to suffer from chronic headaches, cognitive deficits, debilitating fatigue, and parenthesis. These persistent symptoms are explained away by the fibromyalgia syndrome [1], which provides a convenient sense of closure to researchers but leaves patients in the throes of devastating illness. There is ample evidence to retire this model in favor of one involving chronic infection. Some researchers have successfully cultured Bb from the skin or cerebrospinal fluid of patients after antibiotic regimens generally accepted as curative by academic researchers [2], while other clinicians have recovered the bacteria from patients who have undergone even long-term high-dosage antibiotic therapy [3]. In addition, researchers have demonstrated that Bb can penetrate and persist within human endothelial cells [4] and fibroblasts [5]. Yet most academic researchers continue to deny the prevalence of chronic infection in Lyme disease. There are also flaws with the academicians' diagnostic protocols. Lyme disease presents physicians with a diagnostic dilemma because its symptoms are so diverse and the commonly available serological tests used in diagnosis are known to be unreliable. Thus, while it may seem reasonable for researchers to insist that clinicians confine their studies of long-term therapy to patients who are demonstrably seropositive, it is scientifically -- and morally -- indefensible to advocate a rigid adherence to this overly restrictive diagnostic procedure in a clinical setting to determine treatment. Arbitrarily withholding antibiotic therapy from all seronegative patients guarantees that an unacceptably high percentage of them will go on to develop incurable late-stage Lyme disease. Such a policy also can lead to the under reporting of the real incidence of Lyme disease. The artificially low figures are in turn used by researchers to reinforce their claim that Lyme disease is actually quite rare. Thus, the cycle of denial is complete. The facts, of course, strongly suggest that Lyme disease is seriously under diagnosed. New testing techniques presented at the international conference [6] indicate that Lyme disease will be found to be significantly more common than previously recognized. The rejecting of the offending abstracts at the conference had much more to do with their conceptual challenge to current paradigms in Lyme disease research than with their alleged scientific deficiencies. Good science is as much about asking the right questions as it is the sensible pursuit of answers, and many Lyme disease patients do not feel that the mainstream Lyme disease researchers are asking the right questions. The existing theories need to be reevaluated in light if the emerging evidence on chronic infection in late Lyme disease. Carl Brenner Lamont-Doherty Geological Observatory of Columbia University Palisades, NY 10964 References: [1] L.H. Sigal, Am. J. Med. 88, 577 (1990) [2] V. Preac-Mursic et al., Infection 17, 355 (1989) [3] K. Liegner, C. Rosenkilde, G Campbell, T. Quan, D. Dennis, "Culture confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States" (Abstr. #63, Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992); E. Masters, P. Lynxwiler, J Rawlings, "Spirochetetemia two weeks post-cessation of six months of continuous p.o. amoxicillin therapy" (Abst. #65 Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992) [4] Y. Ma, A. Sturrock, J. Weis, Infect. Immun. 59, 671 (1991). [5] Th. Haupl et al., "Persistence of Bb in chronic Lyme disease: altered immune regulation or evasion into immunologically privileges sites?" (Abstr #149, Fifth Int'l Conference of Lyme Borreliosis, Arlington, VA, 1992) [6] K. Liegner, C. Garon, D. Dorward, "Lyme borreliosis studies with the Rocky Mountain Laboratory (RML) antigen capture assay in urine" (Abstr #104, Fifth Int'l Conference on Lyme Borreliosis, Arlington, VA, 1992) http://www2.lymenet.org/domino/nl.nsf/UID/1-02 ----- From the archives of NewsLibrary: http://www.newslibrary.com//default.htm Truncated articles matching ""lyme disease" AND fibromyalgia: Published on 10/14/97, THE STATE CONSTANT PRECAUTIONS IN ORDER FOR DISEASE * "Vital Signs" is to be commended for the recent column on Lyme disease. More education is needed. Surveys at Fort Jackson in 1990 and 1991 found infected ticks. Lyme disease is a complex illness that can be devastating and costly if it is not treated. Lyme disease can mimic many illnesses, such as Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis, multiple sclerosis, etc. Unless a physician has accurate, up-to-date information, a misdiagnosis is very likely. [end of truncated article] ----- Published on 08/10/97, DETROIT FREE PRESS LYME DISEASE STILL A STRUGGLE FOR ROB KRESS I'm always being asked "Whatever happened to" about former local radio and television personalities. In recent years, former WXYZ (Channel 7) weathercaster Rob Kress is the one I get asked about most. He's the fellow with that distinctive orange-red curly hair. Kress left the air four years ago because of Lyme disease, an acute inflammatory disease caused by deer tick bites. He'd been with the station for 16 years. [end of truncated article] ----- Published on 05/19/97, BOSTON GLOBE LYME DISEASE: IT'S FRUSTRATING, MYSTIFYING AND VERY SNEAKY Lyme disease is one of the most insidious illnesses around. It gets you while you're doing something pleasant -- like walking in the woods on a summer day. The tick that carries it is so tiny -- the size of the period at the end of this sentence -- that you can barely see it. And seeing it is important, because if you pick it off with tweezers within 24 to 48 hours, chances are you won't get sick. [end of truncated article] ----- Published on 05/12/97, INTELLIGENCER JOURNAL (LANCASTER, PA.) INCIDENCE OF LYME DISEASE GROWING IN PENNSYLVANIA Lyme disease is the most common insect-transmitted illness in the United States and it's on the rise - southeastern Pennsylvania, in particular, is a high-risk area. But despite the spread, many sufferers are having trouble getting an accurate diagnosis, effective treatment and, in some cases, full insurance coverage. The national Lyme Disease Foundation argues only 10- to 15 percent of the actual cases of Lyme disease are reported to the national Centers for Disease Control, primarily because of [end of truncated article] ----- Published on 02/20/95, PORTLAND PRESS HERALD WHEN LYME DISEASE INVADES THE BRAIN, SPINAL SYSTEM A young woman, whose doctor declined to identify her, thought she was going crazy. Suddenly, this once perfectly healthy college freshman developed severe anxiety, panic attacks, insomnia and loss of appetite. A doctor and a psychologist at her college's health service recommended rest for what they thought were problems in adjusting to being away from home. [end of truncated article] ----- Published on 02/19/95, ST. PAUL PIONEER PRESS HEADLINE: OFTEN, LYME DISEASE IS HARD TO DIAGNOSE AND DIFFICULT TO TREAT TEXT: He told of a 47-year-old man who experienced depression and memory problems as his main signs of Lyme disease, symptoms that responded well to intravenous antibiotics. The symptoms recurred five months later, but he was not treated a second time. He developed a type of dementia that required hospitalization. and He died a few years later. An autopsy found Lyme spirochetes in a degenerated part of his brain. Children also can develop a neurological form of Lyme disease that often shows up as [end of truncated article] ----- Published on 06/21/93, THE EVANSVILLE COURIER 'VICTIMS' SAY THE PAIN IS REAL Mary Jo Hipp would like to invite the author of that report to try coping with her illness for awhile. The 34-year-old Haubstadt, Ind., mother of four had always been healthy until she was bitten by a tick three years ago. Since then she's been sick most of the time. [end of truncated article] --------------- See: Lyme disease Misdiagnosed as Fibromyalgia - Index http://www.geocities.com/HotSprings/Oasis/6455/fms-index.html --------------- Prepared by Art Doherty Lompoc, California doherty@utech.net