LymeNet Newsletter Volume 4 Issue 15

Volume: 4
Issue: 15
Date: 04-Nov-96

Table of Contents:

I. LYMENET: New LD Patient Documentary Available II. N ENGL J MED: Lyme Disease in Children in Southeastern CT III. LDF: Response to Recent NEJM Paper on LD in CT Children IV. INT J FOOD MICROBIOL: Borrelia burgdorferi: Another Cause of Foodborne Illness? V. About The LymeNet Newsletter

Newsletter:

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

IDX# Volume 4 - Number 15 - 11/04/96 IDX# INDEX IDX# IDX# I. LYMENET: New LD Patient Documentary Available IDX# II. N ENGL J MED: Lyme Disease in Children in Southeastern CT IDX# III. LDF: Response to Recent NEJM Paper on LD in CT Children IDX# IV. INT J FOOD MICROBIOL: Borrelia burgdorferi: Another Cause IDX# of Foodborne Illness? IDX# V. About The LymeNet Newsletter IDX#

I. LYMENET: New LD Patient Documentary Available --------------------------------------------------- Sender: <[email protected]>

We are pleased to offer a new one hour video entitled Lyme Disease, Time For Truth.

This documentary reflects the struggles and hardships that Lyme Disease victims face while searching for a diagnosis, physicians and adequate treatment. There are no actors. The people tell the story. It features Denise Lang, author of Coping With Lyme Disease, several courageous physicians, patient advocates, and Lyme patients talking about the true issues that exist today from misdiagnosis to insurance problems.

Now available for order. The cost of the video is $19 with $4 shipping and handling.

Please make checks payable to Lyme Disease Awareness Fund (or LDAF) mail to:

Lyme Disease Awareness Fund PO BOX 3 Chester, NJ 07930

Delivery of premier orders will be sent via Priority Mail within 4-6 weeks.

This is a not for profit project. Money derived from the sale of this video will go to research on Lyme disease after payment is completed for the production of it.

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II. N ENGL J MED: Lyme Disease in Children in Southeastern CT --------------------------------------------------------------- AUTHORS: Michael A. Gerber, Eugene D. Shapiro, Georgine S. Burke, Valerie J. Parcells, Gillian L. Bell, ORGANIZATION: Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children's Medical Center, Hartford (M.A.G.,G.S.B.); the Departments of Pediatrics (E.D.S., V.J.P.) and Epidemiology (E.D.S.) and the Children's Clinical Research Center (E.D.S.), Yale University School of Medicine, New Haven; and the Department of Pediatrics, University of Connecticut School of Medicine, Farmington (G.L.B.) -- all in Connecticut. REFERENCE: N Engl J Med 1996;335:1270-4 ABSTRACT:

BACKGROUND: Although the incidence of Lyme disease is highest in children, there are few prospective data on the clinical manifestations and outcomes in children. METHODS: We conducted a prospective, longitudinal, community-based cohort study of children with newly diagnosed Lyme disease in an area of Connecticut in which the disease is highly endemic. We obtained clinical and demographic information and performed serial antibody tests and follow-up evaluations. RESULTS: Over a period of 20 months, 201 consecutive patients were enrolled; their median age was 7 years (range, 1 to 21). The initial clinical manifestations of Lyme disease were a single erythema migrans lesion in 66 percent, multiple erythema migrans lesions in 23 percent, arthritis in 6 percent, facial-nerve palsy in 3 percent, aseptic meningitis in 2 percent, and carditis in 0.5 percent. At presentation, 37 percent of the patients with a single erythema migrans lesion and 89 percent of those with multiple erythema migrans lesions had antibodies against Borrelia burgdorferi. All but 3 of
the 201 patients were treated for two to four weeks with conventional antimicrobial therapy, which was administered orally in 96 percent. All had prompt clinical responses. After four weeks, 94 percent were completely asymptomatic (including the two patients whose parents had refused to allow antimicrobial treatment). At follow-up a mean of 25.4 months later, none of the patients had evidence of either chronic or recurrent Lyme disease. Six patients subsequently had a new episode of erythema migrans. CONCLUSIONS: About 90 percent of children with Lyme disease present with erythema migrans, which is an early stage of the disease. The prognosis is excellent for those with early Lyme disease who are treated promptly with conventional courses of antimicrobial agents.

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III. LDF: Response to Recent NEJM Paper on LD in CT Children ------------------------------------------------------------- Sender: Tom Forschner, The Lyme Disease Foundation <[email protected]>

EDITORS'S NOTE: The following letter was recently sent to Drs. Gerber and Shapiro. It is being reprinted below for your information.

Dr. Michael A. Gerber Department of Pediatrics University of Connecticut School of Medicine 282 Washington St. Hartford, CT 06106

Dr. Eugene D. Shapiro Department of Pediatrics Yale University School of Medicine New Haven, CT 06520

October 25, 1996

Dear Drs. Gerber & Shapiro:

I read your recent article in the New England Journal of Medicine, and congratulate you on a what must be a significant career accomplishment. Your survey confirms what the Lyme Disease Foundation and numerous published articles in peer reviewed journals have been saying; that those with easily recognizable symptoms of Lyme disease, who are diagnosed and treated early respond very well.

The press accounts of your article however, appear to be significantly different than what was actually described in your paper. I hope that in the interest of promoting safety and public health, you will correct the misconception that has been created.

The Lyme Disease Foundation is particularly concerned by the following quotes used by the Associated Press and New York Times:

"The study shows that Lyme disease in children is easy to diagnose and easy to treat, " said Dr. Michael Gerber, a professor at the University of Connecticut who conducted the study.

"It's amazing how many people in Connecticut think Lyme disease is not curable," Gerber said.

"Over time, the disease tends to burn itself out, even without treatment, in many people," Shapiro said.

Similar sound bites were used on television. This is significantly different than the conclusion in your paper:

"The prognosis is excellent for those with early Lyme disease who are treated promptly with conventional courses of antimicrobial agents."

I am sure that these quotes must have been taken out of context since your article focused only on early Lyme disease and the entry criteria (CDC surveillance criteria ) was prejudiced toward patients who had the most obvious signs and symptoms (primarily EM and swollen joints) of Lyme disease. It has been well documented that the population selected in your study only represents a small portion of all cases of Lyme disease. Applying your conclusion to all Lyme disease cases simply cannot be supported. In addition, your definition of a cure was based on a phone survey with the parents of the children, not objective scientific evidence.

The unfortunate effect of this misinformation is confusion, and dismissal of the fine educational efforts of many organizations (NIH, CDC, Health Depts., LDF, etc.) who are trying to increase awareness and protect the public. A careless or frivolous attitude toward this disease could be tragic.

I urge you to issue a press release immediately correcting the misconception that all Lyme disease is easy to diagnose and easy to treat, or may not require treatment, and restate the actual conclusion of your paper.

Sincerely,

Thomas E. Forschner, Executive Director

cc:

Editor <[email protected]> New England Journal of Medicine 10 Shattuck St. Boston, MA, 02115-6094

Emily Tsao, Associated Press 55 Farmington Ave. Hartford, CT 06105 860-246-6876

Ellen Freeman, New York Times 229 West 43rd St New York, NY 10036-3959 212-556-1234

Dr. Duane Gubler, Centers for Disease Control & Prevention Box 2087 Fort Collins Co 80522-2087

Dennis Dixon, National Institutes of Health 6003 Executive Blvd. Rm 3A06 Rockville, MD 20852-3823

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IV. INT J FOOD MICROBIOL: Borrelia burgdorferi: Another Cause of Foodborne Illness? ------------------------------------------------------------------ AUTHORS: Farrell GM Marth EH REFERENCE: Int J Food Microbiol 1991 Dec;14(3-4):247-60 ABSTRACT:

Borrelia burgdorferi was identified as the etiological agent of Lyme disease in 1982. This Gram-negative spirochete is classified in the order Spirochaetales and the family Spirochaetaceae. The pathogen is fastidious, microaerophilic, mesophilic and metabolises glucose through the Embden-Meyerhof pathway. A generation time of 11 to 12 h at 37 degrees C in Barbour-Stoenner-Kelly medium has been reported. Lyme disease, named after Lyme in Connecticut, is distributed globally. It is the most commonly reported vector-borne disease in the United States, where the incidence is highest in the eastern and midwestern states. Since establishment of national surveillance in 1982, there has been a nine-fold increase in the number of cases reported to the U.S. Centers for Disease Control. The deer tick of the genus Ixodes is the primary vector of Lyme borreliosis. The tick may become infected with B. burgdorferi, by feeding on an infected host, at any point in its 2-year life cycle which involves larval,
nymphal and adult stages. The infection rate in deer ticks may be as high as 40% in endemic areas. The primary vertebrate reservoirs for Ixodes are the white-footed mouse (Peromyscus leucopus) and the white-tailed deer (Odocopileus virginianus). Dairy cattle and other food animals can be infected with B. burgdorferi and hence some raw foods of animal origin might be contaminated with the pathogen. Recent findings indicate that the pathogen may be transmitted orally to laboratory animals, without an arthropod vector. Thus, the possibility exists that Lyme disease can be a food infection. In humans, the symptoms of Lyme disease, which manifest themselves days to years after the onset of infection, may involve the skin, cardiac, nervous and/or muscular systems, and so misdiagnosis can occur.

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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] -----------------------------------------------------------------------