LymeNet Newsletter Volume 4 Issue 16

Volume: 4
Issue: 16
Date: 18-Nov-96

Table of Contents:

I. LYMENET: Lyme Physicians Request Patient Feedback II. LYMENET: Government Information on Lyme Available III. LYMENET: Concerns Raised Over Lyme Disease Report IV. AM J PHYS MED REHABIL: Lyme borreliosis neuropathy. A case report. V. J INFECT DIS: Characteristics of Lyme disease spirochetes in archived European ticks. VI. About The LymeNet Newsletter

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 4 - Number 16 - 11/18/96 IDX# INDEX IDX# IDX# I. LYMENET: Lyme Physicians Request Patient Feedback IDX# II. LYMENET: Government Information on Lyme Available IDX# III. LYMENET: Concerns Raised Over Lyme Disease Report IDX# IV. AM J PHYS MED REHABIL: Lyme borreliosis neuropathy. IDX# A case report. IDX# V. J INFECT DIS: Characteristics of Lyme disease spirochetes IDX# in archived European ticks. IDX# VI. About The LymeNet Newsletter IDX#

I. LYMENET: Lyme Physicians Request Patient Feedback ------------------------------------------------------- Sender: S. Chandra Swami, M.D., M.B.B.S.

EDITORS'S NOTE: Dr. Sawmi has requested that this letter be circulated to as many Lyme patients as possible. It is reprinted below for your information.

S. Chandra Swami, M.D. Colonial Square Professional Center 701 North Hermitage Road Hermatige, PA 16148 TEL (412) 981-3322 FAX (412) 981-6760 October 21, 1996

Dear Lyme Patient,

We are Beginning a struggle to fight for the right to treat Lyme patients. Today, like others across the nation, we have been put in a position to defend treatment protocols that have been common-place in the primary care setting, but not readily accepted in the scientific, academic arena. Most of you are fully aware of the nationwide battle that has been heating up for several years. One physician in New Jersey took his life after a severe attack on his protocols. Several have had their licenses removed, others have retreated and stopped treating any Lyme patients, and new targets will be attempted if this does not stop.

This will be an intense time for us. Ronda will be compiling the necessary documentation which is an arduous task. Please be patient with us for the interruption of our availability at times.

You may help if you wish. It has been suggested that letters form patients that were treated by any physician including us may be of some help. Please be honest in stating if we have helped or harmed you during your therapy.

It may be addressed to:

To Whom It May Concern: (Send to the office)

Dr. Joseph Burrascano and Dr. John Drulle are assisting us. Please dispel any false rumors of any wrong doings. We are doing this for you. We have the above physicians to treat us, but your right needs to be preserved.

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II. LYMENET: Government Information on Lyme Available ------------------------------------------------------- Sender: Michael Ravnitzky <[email protected]>

You can obtain dozens of military technical reports on Lyme Disease from the Defense Technical Information Center, a government agency.

NOTE: Do not bother using the DTIC web site--in a nutshell, it is worthless because the web site omits most of the two million technical reports in the DTIC collection. Send a letter--you will get much better results.

The fee is likely to be free or only a few bucks. You probably want to include a statement in the letter such as *I agree to pay reasonable fees associated with this request. Please notify me if the cost will exceed $30.*, so that they won't delay the processing of the request. Remember, they will try to dissuade you from asking for such a list. If they send you a letter, and you do not respond, they will withdraw your request and you will not get your information.

Here is a form letter to use for your request:

To: Defense Technical Information Center Attn: DTIC-RSM [Kelly D. Akers, FOIA Manager] 8725 John J. Kingman Road, Suite 0944 Fort Belvoir, VA 22060-6128 USA Phone: 703-767-9194

Dear Ms. Akers:

I request the following records under the provisions of the Freedom of Information Act:

A computer generated technical report bibliography [for all computerized index years] of reports on the subject[s]/keyword[s] of:

________________ OR _________________ OR ________________ OR

_______________ OR _________________ OR _______________

This is a request for DTIC records, please don't forward my request to NTIS. Please include both classified and unclassified records in your search. If any of the records are classified, please review them for release, or the release of nonsensitive portions.

I am an individual, noncommercial requester and this request is not being made for commercial purposes. [OR YOU MIGHT INSTEAD INDICATE IF YOU ARE A COMMERCIAL REQUESTER, OR AN EDUCATIONAL OR SCIENTIFIC INSTITUTION, OR A REPRESENTATIVE OF THE MEDIA] I also agree to pay up to $35 for reasonable fees associated with this request.

Sincerely, ______________

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III. LYMENET: Concerns Raised Over Lyme Disease Report ------------------------------------------------------- (c) 1996 WTNH-TV Channel 8 Date: October 31, 1996

It was hailed as the study that would put to rest many parents fears about Lyme disease. But two Connecticut researchers are coming under fire for offering people a false sense of hope. Here's a follow-up report from News Channel 8's Wendy Cicchetti.

THE STUDY, PUBLISHED IN LAST THURSDAY'S (Oct. 24) NEW ENGLAND JOURNAL OF MEDICINE, FOUND THE PROGNOSIS FOR CHILDREN WITH LYME DISEASE IS EXCELLENT, IF THEY ARE PROMPTLY TREATED WITH ANTIBIOTICS. BUT IT'S *HOW* THE TWO DOCTORS PROMOTED THEIR FINDINGS THAT HAS PEOPLE ACROSS THE COUNTRY, WHO ARE SUFFERING FROM THE DISEASE, UP IN ARMS.

LIFE IS HARDLY WHAT IT USED TO BE FOR CINDY OARATO.

CINDY OARATO / BRISTOL: "Lyme disease has totally destroyed my life."

EVERYWHERE THERE ARE SIGNS OF HER BATTLE AGAINST LYME DISEASE. A HOOK TO HOLD AN INTRAVENOUS BAG FILLED WITH ANTIBIOTICS.

CINDY OARATO / BRISTOL: "In my case with my disease the treatment helps me, but it doesn't cure me."

CINDY, AND OTHERS WHO CONSIDER THEMSELVES CHRONIC SUFFERERS OF LYME DISEASE WERE SENT INTO AN UPROAR LAST WEEK,, WHEN TWO CONNECTICUT RESEARCHERS ANNOUNCED RESULTS OF THEIR STUDY THAT LOOKED AT CHILDREN WITH LYME DISEASE.

DR. EUGENE SHAPIRO / YALE UNIVERSITY (OCT 22): "there seems to be this pervasive fear of Lyme disease being this horrible illness that if someone gets it, it is incurable and leads to all sorts of terrible things. that just really isn't true."

THE STUDY FOUND THE PROGNOSIS FOR CHILDREN WITH LYME DISEASE IS EXCELLENT, IF IT IS DETECTED AND TREATED EARLY...BUT THAT MESSAGE WAS NOT AS CLEAR CUT DURING THE PRESS CONFERENCE. THE ANNOUNCEMENT WAS COVERED BY THE NEW YORK TIMES, THE ASSOCIATED PRESS, SEVERAL LOCAL PAPERS, AS WELL AS NEWS CHANNEL EIGHT. NO SOONER THAN OUR STORY AIRED,, WERE WE INUNDATED ON THE INTERNET WITH RESPONSES FROM PEOPLE ALL OVER THE COUNTRY APPAULED AT THE DOCTORS DOWNPLAYING THE SERIOUSNESS OF THE DISEASE.

THOMAS FORSCHNER / LYME DISEASE FOUNDATION: "The conclusions I saw on T.V. and in the papers was that Lyme disease is easily treated and easily diagnosed and thats just not true."

THE LYME DISEASE FOUNDATION IS URGING THE AUTHORS OF THE STUDY TO RESTATE THEIR CONCLUSIONS ANNOUNCED THAT DAY -- LIKE THIS ONE THAT OUTRAGED CHRONIC LYME DISEASE SUFFERERS.

DR. EUGENE SHAPIRO / YALE UNIVERSITY (OCT 22): "Hopefully, this carefully conducted study will demonstrate that people who have Lyme disease have a good prognosis."

THOMAS FORSCHNER/LYME DISEASE FOUNDATION: "Their conclusions to the public and the media are not the same as the conclusions in the paper."

CINDY OARATO / BRISTOL: "By telling people Lyme disease can't have a dramatic effect I'm afraid that parents might rely on that information and might let up their guard about Lyme disease."

NEITHER DOCTOR MICHAEL GERBER, NOR DOCTOR EUGENE SHAPIRO WOULD SPEAK TO US ON CAMERA ABOUT THE RESPONSE WE RECEIVED. HOWEVER DR. GERBER ISSUED THIS THIS WRITTEN STATEMENT, WHICH DR. SHAPIRO AGREED WITH:

"I STAND BEHIND THE CONCLUSIONS PRESENTED IN THE STUDY WHICH WAS A PROSPECTIVE COMMUNITY BASED EVALUATION OF CONSECUTIVE PATIENTS PRESENTING TO THEIR OWN PEDIATRICIANS. THE COMPREHENSIVE NATURE OF THE FOLLOW-UP EVALUATION OF THESE PATIENTS, WHICH INCLUDED BOTH MULTIPLE TELEPHONE INTERVIEWS AS WELL AS PHYSICAL EXAMINATIONS, GIVES ME A GREAT DEAL OF CONFIDENCE IN THESE CONCLUSIONS."

BUT THE FOLKS THAT WE SPOKE WITH WEREN'T SO CONCERNED WITH THE CONCLUSIONS OF THE STUDY, BUT RATHER HOW THEY WERE PRESENTED TO THE PUBLIC THAT DAY.

To communicate with others who are interested in Lyme disease, we suggest reading the sci.med.diseases.lyme newsgroup on Usenet, or search for Lyme Disease through one of the many search-engines on the Internet.

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IV. AM J PHYS MED REHABIL: Lyme borreliosis neuropathy. A case report. --------------------------------------------------------- AUTHORS: Deltombe T, Hanson P, Boutsen Y, Laloux P, Clerin M ORGANIZATION: Department of Physical Medicine and Rehabilitation, University Hospital of Mont-Godinne UCL, Yvoir, Belgium. REFERENCE: Am J Phys Med Rehabil 1996 Jul-Aug;75(4):314-6 ABSTRACT:

Lyme borreliosis is responsible for a large variety of peripheral neurologic manifestations including axonal polyneuropathy, radiculopathy, and facial nerve palsy. The prevalence of the disease must draw our attention on the possible responsibility of Borrelia burgdorferi in the pathogenesis of such symptomatology. Electrophysiologic studies demonstrate a proximal and distal axonal involvement, whereas neuropathologic studies suggest that vasculitis might be one of the primary pathophysiologic mechanisms. Electromyography provides a useful diagnostic tool and an important measure of response to treatment. Although peripheral neuropathy usually improves, our case report confirms the fact that chronic neurologic manifestations may not consistently resolve with appropriate treatment.

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V. J INFECT DIS: Characteristics of Lyme disease spirochetes in archived European ticks. --------------------------------------------------------------- AUTHORS: Matuschka FR, Ohlenbusch A, Eiffert H, Richter D, Spielman A ORGANIZATION: Institut fur Pathologie, Virchow-Klinikum, Medizinische Fakultat der Humboldt-Universitat zu Berlin, Germany. REFERENCE: J Infect Dis 1996 Aug;174(2):424-6 ABSTRACT:

To determine whether the characteristics of the Lyme disease spirochete (Borrelia burgdorferi) in Europe may have changed during the past century, DNA was amplified from archived Ixodes ricinus ticks. Tick DNA could be amplified, even when ticks had been stored under museum conditions for nearly a century. Spirochetal DNA was detected by polymerase chain reaction in 6 ticks preserved for as long as a century; the oldest was collected in 1884. Borrelia garinii, which predominates in modern ticks in the region, infected 3 of these older ticks, and the presently infrequent B. burgdorferi sensu stricto infected 2. These data indicate that residents of Europe have been exposed to diverse Lyme disease spirochetes at least since 1884, concurrent with the oldest record of apparent human infection.

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VI. 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]>
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