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Volume: 5 Table of Contents: I. LYMENET: Editors Respond To Reader Concerns Regarding Newsletter Content II. LYMENET: NJ Bill Proposing LD Management on Governor's Desk III. LYMENET: NJ Lyme Case Lost On Technicality IV. LYMENET: New Burrascano and Fallon Video Available V. About The LymeNet Newsletter Newsletter: *********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * *********************************************************************** IDX# Volume 5 / Number 03 / 20-MAR-97 IDX# INDEX IDX# IDX# I. LYMENET: Editors Respond To Reader Concerns Regarding IDX# Newsletter Content IDX# II. LYMENET: NJ Bill Proposing LD Management on Governor's Desk IDX# III. LYMENET: NJ Lyme Case Lost On Technicality IDX# IV. LYMENET: New Burrascano and Fallon Video Available IDX# V. About The LymeNet Newsletter IDX# I. LYMENET: Editors Respond To Reader Concerns Regarding Newsletter Content ----------------------------------------------------------- Sender: The Editors In LymeNet Newsletter vol#5 #02, we published an announcement detailing the availability of a new Web site containing the recommendations of the European Concerted Action on Lyme. The information presented on this site can be seen as "conservative" with respect to their position on diagnosis and treatment. The diagnostic criteria are highly stringent and treatment options seem to reflect the literature 15 years ago. The reader response to the inclusion of this piece was swift and harsh. The consensus of the letters was clear: The ECAL URL should not have been included in the Newsletter. Even though each reader expressed their overall satisfaction with our publication, the ECAL piece was deemed not worthy of publication. We were urged never to return to the Dark Side. In light of this response, it seems appropriate to review the objectives of the LymeNet Newsletter. When our first issue was published in 1993, we strived to circulate information that challenged the conventional wisdom. New research was being performed that disputed long held beliefs, and we felt it was imperative to ensure physicians and decision makers were aware of the changing landscape. In December 1993, we introduced the National LymeNet System -- our first version of an on-line information source for the general public. At the time, the system had limited reach since few has ever heard of the Internet. Current technology limited the implementation of our vision. When the Web propelled the Net to stardom, we introduced the LymeNet home page to bring a new generation of Internet users to our information. Finally, we introduced the LymeNet Search Server several months ago to allow anyone to search the literature for research covering their area of interest. The Search Server treats all works equally -- from the greatly hyped and televised NEJM pieces to the efforts of smaller scientists who don't have the media spotlight. Our endorsement and publication of the Burrascano Diagnosis and Treatment Guidelines firmly places us in the patient camp. Yet the LymeNet's advocacy can be described as low key. We do not "yell" our opinions with splashy headlines and loud Web pages. We would rather point to the literature to justify our positions. Upon careful analysis, we feel those who review the information currently available will eventually agree with us. We are confident our positions are accurate. As such, we are not threatened by contradictory information. In the free market of ideas, the best and most accurate will win in the long run. The ECAL can publish anything they want. When patients and physicians discover their protocols are not universally effective, dissention will ensue. A Newsletter reader wrote to us informing us of the new site. We felt it was relevant and individuals concerned with LD should know of its existence. We do not endorse the site. We will probably never endorse the site and we don't publish it's URL on our Web server. One of the principals of debating can be summarized as such: "You will never understand your own argument unless you understand your opponent's." We will continue publishing material that we expect will be useful to our readers. We may also publish some material presenting differing opinions. Not everyone will agree with every issue of the Newsletter. We accept that. =====*===== II. LYMENET: NJ Bill Proposing LD Management on Governor's Desk ----------------------------------------------------------------- Sender: [email protected], [email protected] & [email protected] Attention anyone living in New Jersey: Three weeks ago the NJ State Senate and Assembly unanimously passed Bill S560 Vector Control Bill "An Act Concerning the Management of Lyme Disease and Other Tick Borne Illnesses"... Governor Whitman has 30 days to sign this bill and she has yet to do this.. nothing but good will come from this bill in terms of prevention and further understanding of Lyme and Lyme like diseases.... if Whitman does not sign this, it is "pocket vetoed" and goes away....Please call the Governors Office at 609-292-6000 and ask that she sign this bill! =====*===== III. LYMENET: NJ Lyme Case Lost On Technicality ------------------------------------------------ Sender: Ira Maurer <[email protected]> Date: March 10, 1997 I'm sorry to report a bad outcome in my trial in New Jersey. The Little Egg Harbor Board of Education got off on a technicality. There is a law on the books to protect municipalities, etc. from having to pay out alot in damages. The law says that a case seeking damages for pain and suffering must be dismissed if there isn't evidence that the plaintiff has suffered a "permanent injury". Dr. Pietrucha refused to state Tara Millar's Lyme condition was permanent in spite of the fact that Tara has had Lyme for almost 5 years and is sliding backwards only 4 months after completing a 4 month course of daily I.V. Claforan. The Medical Malpractice claim was principally against Dr. William Glenn of Tuckerton. Mrs. Millar testified that on 6/5/92, she called Dr. Glenn's office and reported having removed an engorged, embedded tick from her daughter's hip the previous night. She was told there was no point in bringing Tara in to see the doctor since she had no symptoms. Mrs. Millar insisted on getting an appointment and was scheduled to bring Tara in 6 weeks later for an ELISA and CBC. Mrs. Millar says that at her request, Dr. Glenn called her back that same day and talked her out of the appointment for testing in 6 weeks and just told her to look out for "flu like" symptoms. Mrs. Millar says she called the doctor 5 days later and reported that Tara had headaches and said she wanted to bring Tara in out of concern for Lyme Disease. Mrs. Millar claimed the doctor said it wasn't Lyme related and no need to come in. Tara continued to have different symptoms on and off for the next 6 weeks and then started getting sicker in early 8/92. Mrs. Millar says she called the doctor and reported the new symptoms and was still told it wasn't Lyme related. The doctor finally saw Tara in early 9/92 and diagnosed allergic rhinitis and Rxd. a decongestant and an antihistimine, followed by an rx. for Augmentin (Amoxycillin family) for a sinus infection and a subsequent viral upper respiratory infection. The doctor's chart for Tara had nothing in it about any of the phone calls Mrs. Millar claims she had with the doctor. This failure to note the reported tick bite constituted a deviation from the doctor's standard office procedures according to a long time employee of the doctor. The doctor denied that any phone calls were received from Mrs. Millar and denied that his office practice would have caused a phone call reporting the removal of an embedded, engorged tick, if there were no symptoms. The case seemed to turn on the fact that Mrs. Millar didn't take Tara to see another doctor with regard to her concerns about Lyme disease from 6/5/92 until 10/23/92. Mrs. Millar said she trusted the doctor and wanted to believe what he was telling her -- that it wasn't Lyme. The jury couldn't accept that Mrs. Millar wouldn't have taken Tara elsewhere if everything she said was true. As an aside, Dr. Glenn's attorney did not put Dr. Leonard Sigal on the Stand, leaving me all dressed up with no place to go! Maybe next time. Good health to all. =====*===== IV. LYMENET: New Burrascano and Fallon Video Available -------------------------------------------------------- Sender: Lyme Disease Update <[email protected]> Videotapes For Physicians, Health Professionals, & The General Public Most Recent Lecture (112 min.) Of Dr. Joseph J. Burrascano Internationally Recognized Lyme Disease Expert Medical Advisor To L.D. Foundation Published In The 1997 Conn's Current Therapy Topics Myths & Misinformation About L.D. Diagnostic Criteria For L.D. Lab Tests (Sero, PCR's, LUAT) Chronic L.D. Vs. Post-Lyme Syndrome Seronegativity Among Lyme Patients L. D., Fibromyalgia, Chronic Fatigue, MS, & Candida Neuropsychiatric & Arthritic Aspects New & Effective Treatments For Early & Late-Stage L.D. Pregnancy & L.D. Second Video Tape Most Recent Lecture (87 min.) Of Dr. Brian A. Fallon Expert On The Neuropsychiatry Of Lyme Disease Professor Of Psychiatry At Columbia University Director Of The Lyme Disease Program At New York State Psychiatric Institute Topics Neuropsychiatric Lyme Disease: Microbes, Mood, & Politics Videotapes are $19.95 each plus $3 priority postage for one and/or two tapes. Proceeds are donated to Lyme education and research. We encourage others to post this video tape information for others to read. L.D.U. office phone number is 618-382-7777. Mail your check to Lyme Disease Update, 2050 County Road 700 E, Mill Shoals, IL 62862 =====*===== V. 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] ----------------------------------------------------------------------- |
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