Volume: 5 Table of Contents: I. LDRC: September Conference on Emerging Tick Borne Disease in LA II. LYMENET: Survey of Orofacial Pain Associated with LD III. LYMENET: Review of LDF Book by Douglas S. Dodge IV. About The LymeNet Newsletter Newsletter: *********************************************************************** * The National Lyme Disease Network * * http://www.lymenet.org/ * * LymeNet Newsletter * *********************************************************************** IDX# Volume 5 / Number 07/ 02-JUL-97 IDX# INDEX IDX# IDX# I. LDRC: September Conference on Emerging Tick Borne Disease IDX# in LA IDX# II. LYMENET: Survey of Orofacial Pain Associated with LD IDX# III. LYMENET: Review of LDF Book by Douglas S. Dodge IDX# IV. About The LymeNet Newsletter IDX# I. LDRC: September Conference on Emerging Tick Borne Disease in LA --------------------------------------------------------------------- Sender: Rene Landis <[email protected]> THE CALIFORNIA DEPARTMENT OF HEALTH SERVICES The Los Angeles County West Vector Control District present a one-day conference on: EMERGING TICK-BORNE DISEASES IN THE WESTERN UNITED STATES Saturday, September 13, 1997 Held at the Los Angeles County West Vector Control Building, 6750 Centinela Avenue, Culver City, Minutes from LAX (Los Angeles Airport) Program Chairpersons: Robert S. Lane, PhD James H. Katzel, MD Lodging for Registrants Suggested at: Red Lion Hotel, 6161 Centinela Avenue 310-649-1776 or 1-800-RED LION Complimentary Friday Evening Wine & Cheese Reception at Red Lion, 6 PM FEE WITH REGISTRATION - $125.00 CME - 6 This conference has been approved for six contact hours of continuing education credit. The California Department of Health Services is approved as a provider for continuing education by the California Medical Association in the Continuing medical education Category I credit, the California State Board of Registered Nursing, Provider 00584, the State Board of Dental Examiners, Provider 6-2645, and the Accreditation Evaluation Services of the California Pharmacists Association, Provider #160 (expires 2/18/98) Day of Lectures followed by Panel Discussion & Optional Public Forum For PUBLIC FORUM only, at 4:30, there will be no charge. Contributions to Lyme Disease Resource Center for this conference are appreciated! If you would like brochures or program information sent to physicians & health professionals, please Email, Snail Mail or Fax all address information to: Rene Landis, Conference Organizer 2712 Saint Clair Drive, Las Vegas NV 89128 Phone: 702-256-9776 Fax: 702-256-9774 [email protected] =====*===== II. LYMENET: Survey of Orofacial Pain Associated with LD ---------------------------------------------------------- Sender: Gary M. Heir, DMD <[email protected]> Dear Lyme Patient: As you are well aware, Lyme disease is often accompanied by a variety of pain problems, many of which mimic other disorders. As a professor of dentistry, President Elect of the American Academy of Orofacial Pain, and the parent of a chronic Lyme sufferer, I have attempted to make my dental colleagues aware of the symptoms of Lyme disease which may bring a previously undiagnosed patient to a dentist under the presumption that their pain is due to dental causes. While others and I have clearly observed dental and facial pain in the Lyme patient, science requires that we collect specific numbers and analyze our findings. Therefore, I ask for your assistance in answering the following questions. Of course, if you have any specific questions regarding an individual problem, I will be more than happy to try and help. I can not thank you enough for your help. The information obtained in this survey will be used in lecture material and future publications to inform healthcare providers about Lyme disease. Your contribution is sincerely appreciated. Sincerely, Gary M. Heir, DMD Diplomat, American Board of Orofacial Pain Clinical Associate Professor, Dept. of Oral Pathology, Biology, and Diagnostic Services, University of Medicine and Dentistry of New Jersey President Elect, American Academy of Orofacial Pain E-mail: [email protected] Please EMAIL any specific problem you have, or have had not addressed below, in order that it may be added to future surveys. ----------------------------------------------------------------------- 1. Have you been diagnosed with Lyme disease? Yes____ No____ Did you have a tick bite? Yes____ No____ Did you have an EM [Erythema migrans or Bull's Eye rash] Yes____ No____ If diagnosed, how? ____ Blood test ____ Urine Test ____ Spinal Tap ____ Clinical Presentation If yes, was your Lyme disease diagnosed early____ or late ____? 2. Have you observed any of the following? TMJ pain [pain in the jaw joints or in front of the ears during chewing] Yes____ No____ Pain of jaw muscles with or without chewing Yes____ No____ If yes, was TMJ discomfort associated with an injury Yes____ No ____? or did it just begin by itself Yes____ No ____? If yes, is the TMJ pain constant Yes____ No ____, or does it cycle through periods of pain and remission consistent with other symptoms of Lyme disease? Yes____ No____ Have you had dental treatment for a temporomandibular disorder? Yes____ No____ 3. Have you had: Toothache and the dentist could find no specific problem? Yes____ No____ Has dental pain changed locations, moving from tooth to tooth? Yes____ No____ Have you had multiple dental treatments with little success? Yes____ No____ Have you experienced burning mouth? Yes____ No____ Have you experienced sore throat? Yes____ No____ Does you dental pain, burning mouth or sore throat cycle thorough periods of pain and remission consistent with other symptoms of Lyme disease? Yes____ No____ 4. Do you have facial pain or other unusual sensations? Yes____ No____ Described as: ____ Burning ____ Numb ____ Tight ____ Aching ____ Throbbing ____ Electric shock Are these complaints: ____ Constant ____ Intermittent ____ Associated with flares of other Lyme disease symptoms 5. Do you have headache? Yes____ No____ If yes, is your headache ____ Constant ____ Intermittent ____ Associated with flares of other Lyme disease symptoms Have been diagnosed as: ____ Migraine ____ Tension type headache ____ Stress ____ Muscle headache What treatment have you been offered for headache? ____ None ____ Psychological support ____ Over-the- Counter medications [self treatment] ____ Prescription Non-Steroidals [Motrin, Advil, etc.] ____ Prescription analgesic [Codeine, Vicodin, Percodan, etc.] Was treatment successful? Yes____ No____ 6. Do you have, or have you had any neurological manifestation of Lyme disease in your face or jaws? Yes____ No____ Describe: ____ Bell's Palsy [___one side only ____ both sides] ____ Trigeminal neuralgia 7. Do you have, or have you had sinus headache? Yes____ No____ 8. How many physicians, dentists, or other health care providers did you seek treatment with for these or other complaints before being diagnosed with Lyme disease? ___ 1 ___ 2-5 ___ 6-10 ___ More than 10 How long do you think you had Lyme disease before you were correctly diagnosed? ___ Less than one year ___ 2-5 years ___ 6-10 years ___ More then 10 =====*===== III. LYMENET: Review of LDF Book by Douglas S. Dodge ----------------------------------------------------- Sender: Douglas S. Dodge The following book review represents the opinions of the author and not necessarily the perspectives of the editors. EVERYTHING YOU NEED TO KNOW ABOUT LYME DISEASE And Other Tick-Borne Disorders By Karen Vanderhoof-Forschner New York: John Wiley & Sons, Inc. 1997. 237 pages. $14.95 This book is for the millions already infected, plus the hundreds of thousands who will sicken before a universal vaccine is available. It is written by one of the doyennes of Lyme disease. She joins the sorority of other pioneers for truth in the battle against an out-of- control epidemic. They include Martina H. Ziska, M.D., Denise Lang, author of _Coping With Lyme Disease_, and Polly Murray who wrote _The Widening Circle_. In 1988, Karen Vanderhoof-Forschner incorporated the present Lyme Disease Foundation with her husband Tom. In 1991 they lost a son to Lyme disease infection transmitted during her pregnancy. The Forschners have devoted their lives to helping others stand up to those who claim that "nobody dies of Lyme disease;" to those who preach that Lyme disease is overdiagnosed; to those who disseminate these and other falsehoods through clinics, hospitals, government agencies, insurance companies, universities, and tens of thousands of doctors' offices. The Foundation's mission has not been easy. It has met with resistance, even vilification, from professors of medicine, from practicing physicians conned by academicians, and from federal health agencies which hold opposing views on diagnosis and treatment of Lyme disease. A National Institute of Health scientist has called this most influential of the nation's Lyme disease groups "The Whacko Lyme Disease Foundation," resulting in an accusation of insubordination and conduct unbecoming a federal employee. He received a "Notice of Proposed Suspension" from the NIH which maintains five-figure grants to the Foundation and has just given a public service award to Karen. In September 1995, Connecticut Magazine wrote that the Forschners "claimed" they lost their son to Lyme disease. The magazine went on to admit that the foundation's cause is not helped by "an undeniable lunatic fringe" that works against it. The Forschners maintain their cool, and their objectives. _Everything You Need To Know About Lyme Disease_ includes, of course, chapters on awareness, signs and symptoms, diagnosis, treatment. Along the way, descriptions of the diseases -- not just Lyme -- that are vectored by ticks. And the hosts -- not just deer and mice and the more and more frequent humans -- that insure survival of the ticks and the Lyme disease bacteria. Many readers will first read here that the old wives' methods of tick removal are guaranteed to speed the injection of the Lyme disease bacteria into bloodstream and brain. Forschner considers "the most important message" in her book to be the proper and prompt removal of the tick. The chapter on "Managing You Property" will teach you how to reduce "the tick larva population by as much as 97 percent. You'll also eliminate about half the population of nymphal ticks and nearly three-quarters of the adults." Cost? More than the 40 dollars for a month of antibiotics, but as New York Magazine puts it, that's "the penalty for having a summer house." The final sections are unique to Karen Forschner's book, demanding its addition to the libraries of patients, physicians, anyone who has ever heard of Lyme disease, and scientists in both camps. These appendices include a 26-page history of Lyme disease, from 1883 to the present, and an invaluable Selected Bibliography of 16 pages. Many readers of this review who might gasp at the numbers in the first paragraph may not know that Karen Vanderhoof-Forschner, along with her other honors and degreees, is a C.L.U., daughter of a C.L.U. who is also an actuary. Using the figures from other researchers contracted by the Centers for Disease Control and Prevention (who honor and fund her), and based on her and their statistics, she has made a tenfold adjustment to the 1995 numbers reported to the CDC under its restrictive, epidemiological definition of Lyme disease. The result is 808,000. By the end of 1996 it was 960,000. It doesn't take a C.L.U. to figure out that in the Spring of 1997 over a million people in the U.S.A. suffer from what runs neck-and-neck with AIDS as the fastest- growing infectious disease in the country. Karen's tabulation by state reveals that you would have to meet less than 100 people from New Jersey (93) on up to Rhode Island (42) to find one Lyme disease patient. Try it if you are in line, for instance, at the Stop and Shop in Branford, Connecticut (29). All 29 will at least know someone else with Lyme disease, and a tale of horror to go along with many of them. No statistics can forecast the fate of millions, worldwide, who will go to their deaths not knowing they were misdiagnosed with diseases that Lyme mimics and camouflages. Karen can't list them all. Here are a few: multiple sclerosis, post-polio syndrome, fifth's disease, myasthenia gravis, viral infection of heart, systemic lupus, clinical depression, rheumatoid arthritis, gonorrhea, Epstein-Barr virus, Lou Gehrig's disease, viral infection of spinal cord, Alzheimer's Even armed with Everything You Need To Know About Lyme Disease, the reader is poorly equipped to fend off the disciples of those who try to discredit the Lyme Disease Foundation. One of the reasons is the help that this other camp gets from the media that parrot what is published in scientific presses controlled by academicians. These reports infect an unsophisticated public and unsuspecting general practitioners from whom information on Lyme disease is already withheld, perhaps deliberately, by Washington and Academia. Here are examples of the disinformation that confronts us: 1) "If the blood test is negative, then the patient could not possibly have Lyme" 2) "Eventually, both intermittent and chronic Lyme arthritis resolve, even in untreated patients." 3) "At any stage of the disease. . . almost everybody gets cured." 4) "Ninety percent of all identified Lyme disease cases present with the rash." 5) "Lyme disease prevention requires only minimal precautions, even for people living in areas with the highest concentration of positively identified cases." 6) "Most ticks are not infected." 7) "Thirty-six to forty-eight hours are needed before transmission of the bacteria takes place." This reviewer, his wife, and four children and grandchildren who have Lyme disease, believe that any person picking up Forschner's book will know the proper rebuttals to the above. The Lyme Disease Foundation cannot allow itself the luxury of joining in the polemics and politics of Lyme disease. It is surprising that Karen let go in this book, if only once. Her mention of a "now-infamous study" by Allen Steere in 1977 refers to this rheumatologist-in- training who set back forever the research and funding for a disease that he and colleagues from the Yale School of Medicine self-servingly declared "a new clinical entity." This was a disease "known for at least a century." Steere also claimed that it was treatable with aspirin and steroids. When Forschner writes of the dampened prospects of international cooperation because of "an attitude of superiority" of some U. S. scientists, she is referring to Steere and the academicians he spawned at Yale, now at Tufts, at the University of Connecticut, and at the Robert Wood Medical Center in New Jersey. We, the patients, need Forschner's help. We, the patients, also need help from our government. Where are Kennedy and Dodd with their promises made at the August 1993 Senate Hearing for an end to this "silent epidemic?" Silent? Or silenced? Metzenbaum, who chaired the Hearing, and asked to be told "how much more you need [for public instruction and financial support]," is also silent. Retired. If we can't count on our own government's epidemiologists and health authorities to educate, warn and protect us, if Washington is incapable of brokering a peace between the realists and the feel-gooders, must we turn to the outside world? Scientists from abroad have taught us, as well as learned from us. They have even kowtowed, by accepting use of the name Lyme disease which, by the World Health Organization's International Nomenclature of Disease, might more properly be called Buchwald borreliosis after the German physician who in 1883 described the skin condition caused by late-stage Lyme, as Karen Forschner chronicles. But we risk international scientific ostracism if we continue to play the fool over here. One of the Yale physicians, Robert T. Schoen, hosting their May 1997 Lyme disease symposium is quoted as stating that "when he contradicts a previous diagnosis of Lyme disease by another doctor, his intention is to reassure the patient." Eugene D. Shapiro, another Yale School of Medicine colleague who can't be taken seriously, is responsible for the comment that "there are probably better ways to spend health-care dollars" than on research for a Lyme disease vaccine. Karen Vanderhoof-Forschner speaks, solemnly, to those who from others may never hear the truth. =====*===== IV. ABOUT THE LYMENET NEWSLETTER ---------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please refer to the LymeNet Home Page at: http://www.lymenet.org ----------------------------------------------------------------------- To unsubscribe from the LymeNet newsletter, send a message to: [email protected] On the first line of the message, write: unsub lymenet-l ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX (for contributions ONLY): 908-789-0028 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director <[email protected]> William S. Stolow, President <[email protected]> The Lyme Disease Network of New Jersey ----------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITORS. ----------------------------------------------------------------------- THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY. ----------------------------------------------------------------------- SEND ALL BUG REPORTS TO [email protected] ----------------------------------------------------------------------- |
Home |
Flash Discussion |
Support Groups |
On-Line Library © 1994-1999
The Lyme Disease Network of New Jersey, Inc. |