Volume: 1 Table of Contents: ANNOUNCEMENT: Letters Sought to Greet Dr. Gasser ANNOUNCEMENT: NJ Devils Fund-raiser for Pediatric Lyme Foundation LYMENET NEWS: Chronic LD Patient Wins Injunction Against Insurer in Court NEWS: Doubting Doctors 'Drove Rare Disease Woman To Suicide' ABSTRACT: (Proc Natl Acad Sci) Isolation and Transmission of the Lyme Disease Spirochete from the Southeastern United States LETTER: Health Care Choice, by Janice Beers BIBLIOGRAPHY: Listing of Several Interesting Publications Newsletter: ***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 23 - 10/04/93 I. Introduction II. Announcements III. News from the Wires IV. Op-Ed Section V. Partial Bibliography for Further Reading VI. Jargon Index VII. How to Subscribe, Contribute and Get Back Issues I. ***** INTRODUCTION ***** Since our review of Karen Angotti's "Lyme Disease: A Mother's Perspective" and Denise Lang's "Coping with Lyme Disease," (issue #20) some individuals have reported problems obtaining these volumes. According to the publisher, the first run of "Coping" is sold out. If you can't get a copy from your bookstore, you may send a check for $12.95 per copy plus $1.50 S/H for the first copy ($.50 S/H for additional copies) to: Director of Special Sales Henry Holt and Co. 115 West 18th Street New York, NY 10011 The Angotti book can also be ordered from the publisher, by sending $5.95 (plus $2 S/H) to: Anerak Publications Box 1822 Cordova, TN 38018-1822 The cost for more than 6 books is $5.00 a piece, S/H included. This issue of the newsletter brings together information from a wide spectrum of sources. Among the topics: * Stephen Nostrom of the Lyme Borrelia Outreach seeks postcards from around the country to show a visiting researcher the high incidence of LD in the US. * The NJ Devils hosts a fundraiser for the Pediatric Lyme Foundation. * A chronic LD patient sues her insurer on Long Island. * Dr. Allen Steere writes a review about LD diagnosis and treatment for the insurance industry. * Janice Beers expresses her opinion of President Clinton's proposed health plan and its implications for LD patients. -Marc. CORRECTION: In the last issue of the newsletter we reported the incidence of LD in Lyme, CT, in Frank Demarest's investigation of MS in Wallingford. Unfortunately, during the final editing process a space character was misplaced, changing the numbers. Lyme reported 26 cases last year, which translates to an incidence of 1,334/100,000. I apologize for any inconvenience or misunderstanding. II. ***** ANNOUNCEMENTS ***** SENDER: The Lyme Borrelia Outreach SUBJECT: Letters of Support to Greet Visiting Scientist Dr. Robert Gasser from the Lyme Borreliosis Study Group in Graz, Austria, will be the guest on Stephen Nostrom's "Lyme Borrelia Outreach" television program this month. LBO is syndicated across the country through local cable companies. Stephen is asking Lyme patients from around the country to send in postcards to show Dr. Gasser the extent of the LD problem in the United States. He hopes to cover the entire studio with correspondence. The program will be distributed to over 400 LD support groups nationwide. If you would like to help, please send a postcard with a brief description of your case to: Lyme Borrelia Outreach Attn: Stephen Nostrom P.O. Box 496 Mattituck, NY 11952 Questions? Call: (516) 298-4074 or (516) 298-9606 or (800) 858-7308 =====*===== SENDER: The Pediatric Lyme Foundation SUBJECT: NJ Devils Fundraiser WHACK VS. QUACK "The Battle Against Lyme Disease In Children Begins October 20" On Wednesday October 20, net proceeds from the game between the NJ Devils and the Anaheim Mighty Ducks will benefit the Pediatric Lyme Foundation's research fund. To order tickets, use the form below or call the Foundation at 201-292-0277. -------------------------------------------------------------------------- ORDER FORM Enclose Check or Money Order and Make Payable to: **** PEDIATRIC LYME FOUNDATION -- RESEARCH FUND **** (All ticket holders for this game will be eligible to win a Disneyland vacation.) MAIL TO: EVENT INFORMATION Pediatric Lyme Foundation NJ Devils vs. Anaheim Mighty Ducks Suite 156 Wednesday, October 20, 1993 103 Washington Street Brendan Byrne Arena Morristown, NJ 07960 East Rutherford, NJ 201-292-0277 GAME TIME: 7:35 pm NAME:______________________________ TELEPHONE #: (_____)_______________ ADDRESS: ______________________________________________________________ CITY: ____________________ STATE: ____________ ZIP: _______________ # OF TICKETS: ____________ @ $25 = TOTAL AMOUNT ENCLOSED: _____________ I am unable to attend, but please find the enclosed contribution $_____ ALL NET PROCEEDS FUND PEDIATRIC LYME DISEASE RESEARCH PROJECTS. All contributions are tax deductible to the full extent allowed by law. Fair market value of the evening is $15.00. -------------------------------------------------------------------------- III. ***** NEWS FROM THE WIRES ****** HEADLINE: Chronic LD Patient Wins Injunction Against Insurer in Court DATE: October 2, 1993 SOURCE: LymeNet News BYLINE: By Marc Gabriel A chronic Lyme patient won a temporary injunction against Prudential insurance last Friday to resume her antibiotic treatment cut off since July 2. Judge Leonard Wexler in Hauppauge (NY) federal court ordered Prudential to pay for Kathleen Zisel's treatment until her suit against the insurer is settled. Court proceedings are scheduled to resume later this week. One of the physicians familiar with her case, Dr. Perry Orenf of Great Neck, NY, says Zisel was "90% recovered" before her treatment was suspended. Zisel relapsed shortly after her antibiotic course was stopped. Prudential's official position is that more than 4 weeks of intravenous treatment is "medically unnecessary." Furthermore, they informed Zisel the suspension was retroactive, leaving her with $60,000 in medical bills. She is seeking continued treatment and reimbursement for the medical costs. Stephen Nostrom of the Lyme Borrelia Outreach in Mattituck, NY, was in the courtroom on Friday. He called the case "precedent setting." He encourages patients and supporters to attend the proceedings this week. =====*===== HEADLINE: DOUBTING DOCTORS 'DROVE RARE DISEASE WOMAN TO SUICIDE' SOURCE: Press Association Newsfile DATE: October 1, 1993, Friday Teacher Hilary Skinner killed herself because doctors refused to believe she was suffering from a rare disease, an inquest heard today. Mrs Skinner, 43, became ill after being bitten by an insect while she lived in Canada. Her husband Mark claimed British doctors who had never heard of her condition thought she was making the story up - but an American specialist confirmed last August that she had contracted the unusual illness. His wife died from carbon monoxide poisoning as she sat in her car last March - a hosepipe from the exhaust led into the vehicle, which was parked outside her home in Ponteland, Northumberland. Alongside her body was a note saying: "I can't live without my health." Newcastle upon Tyne coroner Leonard Coyle heard Mrs Skinner was bitten by a Lyme tick while living in Vancouver, Canada, in 1984. The insect lives in heavily wooded areas and its bite can cause Lyme Disease which affects the nervous system. Mrs Skinner was taken ill almost immediately and the couple returned to Britain for treatment. Mr Skinner, a publishing company executive, said: "Nobody appeared to be interested in her case and treated her as just a neurotic woman. "She told any number of doctors what she thought but they wouldn't believe her and fobbed her off with anti-depressants. "If they had done some research they would have found that Lyme Disease is hard to detect in its final stages but they weren't prepared to look for something they had not heard about." US consultant Dr Elliott Frank diagnosed Lyme Disease when Mrs Skinner went to America last year, the hearing was told. "Hilary was right all the time but the doctors here still wouldn't believe her and she changed from a vibrant woman into someone whose appearance and energy went into rapid decline," said Mr Skinner. Pathologist Dr Nigel Cooper told the hearing: " Lyme Disease is something not seen very often in this country but I do know it can affect the brain and heart." =====*===== TITLE: Isolation and transmission of the Lyme disease spirochete from the southeastern United States. AUTHORS: Oliver JH Jr; Chandler FW Jr; Luttrell MP; James AM; Stallknecht DE; McGuire BS; Hutcheson HJ; Cummins GA; Lane RS ORGANIZATION: Institute of Arthropodology and Parasitology, Georgia Southern University, Statesboro 30460. REFERENCE: Proc Natl Acad Sci U S A 1993 Aug 1; 90 (15): 7371-5 ABSTRACT: The isolation of the Lyme disease spirochete (Borrelia burgdorferi) from the southeastern United States is reported. Three isolates, two from cotton mice (Peromyscus gossypinus) and one from the black-legged tick (Ixodes scapularis), were recovered from Sapelo Island, Georgia, in July and September 1991. The spirochetes were characterized by indirect fluorescent antibody assay using a battery of five monoclonal antibodies, by sodium dodecyl sulfate/polyacrylamide gel electrophoresis (SDS/PAGE) of whole cell lysates, and by the polymerase chain reaction (PCR) assay using primers for three DNA target sequences found in B. burgdorferi reference strain B-31. Transmission experiments indicate that the three Georgia isolates can infect experimentally inoculated hamsters and mice. Tick transmission of one of the isolates has been attempted so far; I. scapularis transmitted isolate SI-1 from hamsters to mice, but the lone-star tick, Amblyomma americanum, did not. VI. ***** OP-ED SECTION ***** On September 23, Janice Beers, founder of the Lyme Disease Association of the United States, sent the following letter to President Clinton, Surgeon General Joycelyn Elders, Secretary of HHS Donna Shalala, Sen. Kennedy and other Senators and Representatives in Congress: -- The issue of most concern to me about President Clinton's health care proposal is CHOICE -- OF PHYSICIANS. I and others with Lyme disease cannot risk being limited to any group of physicians, especially not if we are limited to local physicians or even those in our state. Dr. Joseph McDade from the Centers for Disease Control and Prevention in Atlanta testified at the hearing of the Senate Labor and Human Resources Committee August 5: The principal problem with Lyme disease in this country is the failure to recognize it on the part of the average physician. This bacterial disease is difficult to diagnose and hard to treat once it has progressed beyond the initial localized infection. The Centers for Disease Control has shown that the serolo[gical] tests for it are unreliable. Patients often have gone to many physicians, sometimes to tens of physicians near and far, before a diagnosis is made and antibiotic treatment started. If patients with disseminated disease have to depend upon "gatekeeper" primary care physicians to make a diagnosis or to refer them to the few physicians who can and will, the diagnosis is unlikely to made. Antibiotic treatment will not start, so the disease will inexorably progress with devastating, disabling physical results and looming financial and family crisis. The new system will have caused the disasters it is supposed to prevent. Others with difficult-to-diagnose or rare diseases will face similar disasters. It is vital that those in this country with Lyme disease or suspected Lyme disease be allowed to choose the relatively few physicians in this country (1) who can diagnose the disease once the bacteria are disseminated through the body and (2) who will treat long-term, the months or years it often takes, to reduce or eliminate the symptoms. Thank you for your attention. Sincerely yours, Janice I. Beers, J.D. Addresses: President William J. Clinton Joycelyn Elders, M.D. The White House Surgeon General Washington, DC 20500 U.S. Public Health Service 5600 Fishers Lane, Rm 1866 Rockville, MD 20857 Senator Edward Kennedy Ms. Donna Shalala Chairman, Labor and Human Secretary of HHS Resources Committee 200 Independance Ave. SW United States Senate Washington, DC 20201 Washington, DC 20510 Senator _____________ Representative _____________ United States Senate US House of Representatives Washington, DC 20510 Washington, DC 20515 V. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING ***** We have two citations this week. In the first, Dr. Allen Steere presents his views to the Association of Life Insurance Medical Directors of America. Secondly, Dr. Brian Fallon discusses neuropsychiatric complications of LD. AU - Steere AC TI - Lyme disease. RF - REVIEW ARTICLE: 20 REFS. AD - Tufts University School of Medicine. MH - Antibiotics/ADMINISTRATION & DOSAGE/THERAPEUTIC USE MH - Human MH - *Lyme Disease/COMPLICATIONS/DIAGNOSIS/EPIDEMIOLOGY/THERAPY/ TRANSMISSION MH - Population Surveillance PT - JOURNAL ARTICLE PT - REVIEW PT - REVIEW LITERATURE LA - Eng SO - Trans Assoc Life Insur Med Dir Am 1993;76:73-81 AU - Fallon BA Nields JA Parsons B Liebowitz MR Klein DF TI - Psychiatric manifestations of Lyme borreliosis. AD - Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY. AB - BACKGROUND: Lyme borreliosis (Lyme disease), a tick-borne spirochetal illness, has later manifestations that may include arthritic, neurologic, ophthalmologic, and cardiac symptoms. Recent reports suggest psychiatric symptoms may also be part of the clinical picture. METHOD: Using a structured interview (SCID), we interviewed three patients who had developed a psychiatric disorder for the first time after infection with Borrelia burgdorferi. RESULTS: During Lyme borreliosis, one patient had major depression and panic disorder, one patient had an organic mood syndrome with both depression and mania, and the third patient had panic disorder. These disorders remitted after adequate antibiotic treatment. CONCLUSION: While depression has been previously linked to neuroborreliosis, this is the first report to link panic disorder and mania with borrelial infection. Because of the rapid rise of Lyme borreliosis nationwide and the need for antibiotic treatment to prevent severe neurologic damage, mental health professionals need to be aware of its possible psychiatric presentations. MH - Support, U.S. Gov't, P.H.S. SO - J Clin Psychiatry 1993 Jul;54(7):263-8 VI. ***** JARGON INDEX ***** Bb - Borrelia burgdorferi - The scientific name for the LD bacterium. CDC - Centers for Disease Control - Federal agency in charge of tracking diseases and programs to prevent them. CNS - Central Nervous System. ELISA - Enzyme-linked Immunosorbent Assays - Common antibody test EM - Erythema Migrans - The name of the "bull's eye" rash that appears in ~60% of the patients early in the infection. IFA - Indirect Fluorescent Antibody - Common antibody test. LD - Common abbreviation for Lyme Disease. NIH - National Institutes of Health - Federal agency that conducts medical research and issues grants to research interests. PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence of the microbe in question. Currently being tested for use in detecting LD, TB, and AIDS. Spirochete - The LD bacterium. It's given this name due to it's spiral shape. Western Blot - A more precise antibody test. VII. ***** HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES ***** SUBSCRIPTIONS: Anyone with an Internet address may subscribe. Send a memo to [email protected] in the body, type: subscribe LymeNet-L <Your Real Name> DELETIONS: Send a memo to [email protected] in the body, type: unsubscribe LymeNet-L CONTRIBUTIONS: Send all contributions to [email protected] or FAX them to 215-974-6410. All are encouraged to submit questions, news items, announcements, and commentaries. BACK ISSUES: Available via 2 methods: 1. E-Mail: Send a memo to [email protected] in the first line of the body, type: get LymeNet-L/Newsletters x-yy (where x=vol # and yy=issue #) example: get LymeNet-L/Newsletters 1-01 (will get vol#1, issue#01) 2. Anonymous FTP: ftp.Lehigh.EDU:/pub/listserv/lymenet-l/Newsletters ----------------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX: 215-974-6410 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director William S. Stolow, President The Lyme Disease Network of New Jersey (908-390-5027) ----------------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITOR. ----------------------------------------------------------------------------- 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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