LymeNet Newsletter Volume 1 Issue 08

Volume: 1
Issue: 08
Date: 15-Apr-93

Table of Contents:

ANNOUNCEMENT: NJ LD Coalition: Candlelight Vigil NEWS: NJ Lyme Bill Passes Senate ABSTRACT: (J. Infect. Dis.) Experimental Lyme Disease in Dogs Produces Arthritis and Persistent Infection QUESTION: Is This LD? ANSWER: Is This LD? FEATURE: Treatment Protocol, By Philip Paparone, MD

Newsletter:

***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 08 - 4/15/93

I. Introduction II. Announcements III. News from the wires IV. Questions 'n' Answers V. Jargon Index VI. How to Subscribe, Contribute and Get Back Issues

I. ***** INTRODUCTION *****

This week's issue contains two major sections: a significant announcement, and the publication of a set of treatment protocols.

A very important demonstration will take place in New Jersey on May 1st to demand that public officials stop denying the Lyme disease epidemic. All are encouraged to attend to make their voices heard.

Also in this issue, we answer some reader questions pertaining to treatment. Attached you will find specific information about drugs and their recommended dosages as recommended by Dr. Philip Paparone. I hope this will help dispel the "28-days-of-antibiotics-cures-all-Lyme" myth.

-Marc.

II. ***** ANNOUNCEMENTS *****

Ed. Note: The following announcement was published in the last issue of the newsletter. The information has been updated and amended since then. Here is the revised message.

FROM: The Lyme Disease Coalition of NJ SUBJECT: Candlelight Vigil

The Lyme Disease Coalition of New Jersey is sponsoring a candlelight vigil to kick off [New Jersey's] "Lyme Disease Awareness Month." Join many NJ families who have been stricken with Lyme disease at the War Memorial in Trenton on May 1st at 7pm. The Coalition will honor some special people who have made a substantial contribution to Lyme disease.

Everyone who has been touched by Lyme disease must be there. A large turnout will send a strong message to Trenton and Washington, specifically the New Jersey Department of Health and the Centers for Disease Control, that we will not be brushed aside. Chronic Lyme disease is something that needs to be dealt with through research and education - not denial and ignorance. BE THERE MAY 1st, 1993.

We have not been alarmist in the past. We are not being alarmist now when we tell you that we are at the most critical crossroads in the fight against Lyme disease. This is a very strong movement to deny your insurance benefits, to deny your treatment, and deny your very health and sanity. Witness these recent events:

1991-2 Insurance cut-offs; use of CDC surveillance definition for diagnosis; hospital harassment of patients and doctors.

Feb 1993 CDC "Gallbladder" study [An incomplete study by the CDC that slanted the effects of IV Rocephin on children]

Mar 1993 New CDC definition - even more restrictive

Mar 1993 NJ Task force on Lyme Disease ignores chronic Lyme, major studies; limits treatment to 4 to 8 weeks.

Apr 1993 "The Over diagnosis of Lyme Disease" by Allen Steere, JAMA.

Apr 1993 "Over-utilization of Services: The Example of Lyme Disease" by Leonard Sigal at a major health conference.

Coming Audits of your doctor by a "panel of experts" (suggested by above soon! NJ Task force).

Something bad is happening. You must come to protest.

There is ample parking available across the street and around the War Memorial. Permits and security have been arranged. Bring your children, your parents, your neighbors and your friends. This may be our "last chance" to get our message across!

WE WILL LIGHT CANDLES OF SORROW FOR THOSE WHO HAVE NOT SURVIVED LYME DISEASE AND LIGHT CANDLES OF HOPE FOR THOSE WHO SUFFER. CANDLES WILL BE PROVIDED.

For more information, please call: 908-363-4070, 908-657-2190, 201-288-5249 or 609-751-1355.

Residents from all 50 states are invited.

III. ***** NEWS FROM THE WIRES ******

State of New Jersey BILL: 1992 NJ S.B. 1297 LAST-ACTION: MARCH 22, 1993 SYNOPSIS: Requires health insurers to cover Lyme disease.

STATUS: 10/22/92 INTRODUCED. To SENATE Committee on COMMERCE. 11/23/92 From SENATE Committee on COMMERCE. 03/22/93 Passed SENATE. *****To ASSEMBLY. To ASSEMBLY Committee on INSURANCE.

SPONSOR: Bennett

=====*=====

TITLE: Experimental Lyme Disease in Dogs Produces Arthritis and Persistent Infection AUTHORS: Appel, M.J.G. et al. REFERENCE: J. Infect. Dis. 163:651-664. 1993

Lyme disease was reproduced in specific pathogen-free beagle dogs by exposure to Borrelia burgdorferi-infected ticks (Ixodes dammini). Seroconversion and disease frequency were higher after exposure to infected adult ticks than to infected nymphs. Young pups developed clinical disease more readily than older dogs. The incubation period lasted 2-5 months. Acute recurrent lameness with fibrinopurulent arthritis was the dominant clinical sign. Dogs recovered but developed persistent mild polyarthritis. B. burgdorferi persisted in recovered dogs for at least year. Isolation of B. burgdorferi and detection by polymerase chain reaction was most successful from skin biopsies at the site of the tick bite. Antibody to B. burgdorferi antigens was first detected by ELISA and Western blots by 4-6 weeks after exposure. High serum levels persisted during 17 months of observation. In contrast to infection from ticks, inoculation of dogs with cultured B. burgdorferi resulted in seroconversion with a shorter duration of antibody persistence and no clinical disease.

IV. ***** QUESTIONS 'N' ANSWERS *****

Sender: [email protected] (Debbie Sikkema) Subject: lyme question

I am 37 and live in Durham, NC. When I was pregnant (2.5 years ago), I had pain, swelling, and stiffness in my fingers and other joint pain (due to pregnancy?). I developed glossitis, which I still have. I got tenosyvitis in my wrists after my son was born (for about 6 months).

Several months later, I was sick with a "flu" with severe pain in my back. After I got "well," the fatigue and general aches continued, especially in my back, and I started having more pain/weakness in various joints, particularly my wrists and ankles. Sometimes I woke up with my hands asleep. I also felt depressed.

I was tested for rheumatoid arthritis, lupus, and lyme disease. Only my lyme test (Fairfax Lyme Disease Antibody, EIA) came back positive (1.31 where: negative < .91, equivocal .91-.99, positive > 1.10). I took 2 weeks of an oral antibiotic/probenecid. I then had sensations of pain and stiffness moving up my back into my neck and a bad headache.

I went to a rheumatologist who ran many tests including a repeat of the first lyme test and a second one, and gave me doxycycline for 2 weeks. All tests came back negative except for the repeat lyme test (1.29) and the second lyme test (Indeterminate--early stages/due to other problem).

My rheumatologist ruled out lyme disease since I had no joint swelling, no hip problems, no neurological problems, no rash, and live in NC. I questioned this and so was treated for two weeks with Ceftriaxone as a precaution. I got much better about 6 months ago, for whatever reason, and stayed better until a couple of months ago when I got the "flu". Since then all my symptoms have returned. I have noticed that my symptoms are cyclical and get worse when I catch a "bug"; also, I get sick often, get many infections, and had shingles last fall.

Could I have lyme disease? Is there any chance that my two-year old son could have lyme disease? Also, I am in an HMO and do not have the flexibility of another opinion. What should I do?

I would appreciate any opinions/recommendations on this. Thanks.

=====*=====

Sender: Gary Mundell <[email protected]> Subject: A Question

My co-worker Pam Goddard asked me to submit this:

I was first diagnosed with lyme disease in June of 1990. At the time I was living on Cape Cod, Massachusetts. Since then I have taken tetracycline, doxycycline and xythromycin orally for up to 28 days. I still have symptoms such as painful and swollen joints particularly my right knee and shoulder, swollen glands under my right arm and the right side of my chest, sharp upper back pain, fatigue etc... I am wondering what my next course of action should be? I live in Seattle, Washington and it is hard to find information on treatments out here. Also, I would like to have children within the next two years. My questions are: 1) Where can I find information on the effects of chronic lyme disease on a fetus and the pregnant mother? Can a pregnant woman transmit Borrelia burgdorferi to her fetus? 2) What are my options for further treatment? Where can I find information on treatments for chronic lyme disease?

Ed. To obtain answers to both these questions, as well as the question posed by Barbara Kendall in the last issue, I contacted Lynn Latchford from the Prevent Lyme Foundation. Lynn told me that there is enough published literature to substantiate long term antibiotic treatment. She referred me to the September '92 issue of Modern Medicine, in which Dr, Philip Paparone D.O. (Director and Chief of Infectious Diseases at the Atlantic City Medical Center, Pompona, NJ, and Shore Memorial Hospital, Somers Point, NJ.) offers us his treatment protocols. The protocols are published below.

While each individual doctor's protocols may vary, they should not be far from Dr. Paparone's regimens. In Debbie's case, her doctor treated her for one-third or one-fourth of the recommended duration. At this point, Debbie should seek a Lyme specialist in her area. Lynn informs me that Don Richardson is the director of the South Carolina Lyme Disease Network, in Columbia, SC. Their hotline is at 800-477-7040. He may be of help. Debbie should bring her child along to see the specialist.

Pam's and Barbara's treatments may have been inadequate if their diseases were in the late stage when they were treated. They may wish to show their doctors the enclosed treatment protocols. As for pregnancy, Lynn tells me she knows of 4 cases where the expecting mother was treated for the duration of her pregnancy and the children were fine. Dr. Paparone recommends aggressive amoxicillin therapy for pregnant/lactating women.

Here are the protocols:

TITLE: There is no Standard Approach to Lyme Disease: Your Management must be individualized. AUTHOR: Philip W. Paparone, D.O. REFERENCE: Modern Medicine 60:95-111 (Sept 1992)

EARLY STAGE DISEASE: Which oral antibiotics to use (listed in descending order of preference)

Drug Dosage and Administration ------------------------------------------------------------------------ Amoxicillin 500mg tid for 30 days (Amoxil, Polymox, et al)

Amoxicillin plus probenecid 500mg each tid for 20-30 days (Benemid, et al)

Penicillin G 500mg qid for 30 days

Doxycycline hyclate 100mg bid or tid for 20 days (Doryx, Vibramycin, et al)

Minocycline 100mg bid or tid for 20 days (Minocin)

Cefuroxime 500mg bid for 20 days (Ceftin)

Azithromycin 500mg once daily for 7 days (Zithromax)

Erythromycin 500mg qid for 30 days

"Duration of all therapies may need to be exceeded in certain cases as dictated by the severity of the disease, the clinical response to therapy, and the degree and incidence of possible relapse."

LATE STAGE DISEASE: Which parenteral antibiotics to use (listed in descending order of preference)

Drug Dosage and Administration ------------------------------------------------------------------------ Ceftriaxone sodium 2g q24h or 1g q12h for 6-8 wk (Rocephin)

Cefotaxime sodium 3g q12h or 2g q8h for 6-8 wk (Claforan)

Penicillin G 4 million U q4h for 6-8 wk

Doxycycline hyclate 100mg q12h for 6-8 wk (Vibramycin, et al)

Minocycline 100mg q12h for 6-8 wk (Minocin IV)

Ampicillin sodium 2g IV q6h or 3g IV q8h for 6-8 wk (Omnipen-N, Totacillin-N, et al) plus probenecid 500mg po q8h for 6-8 wk (Benemid, et al)

Piperacillin sodium 4g q6h for 6-8 wk (Pipracil)

"Duration of all these therapies, as in early stage disease, may need to be exceeded in certain cases as dictated by the severity of the disease, the clinical response to therapy, and the degree and incidence of possible relapse."

"The end point of therapy can be defined as asymptomatic or nearly asymptomatic periods of 2 to 4 weeks."

V. ***** 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.

VI. ***** 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>

FAX subscriptions are also available. Send a single page FAX to 215-974-6410 for further information.

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: Send a memo to [email protected] in 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)

----------------------------------------------------------------------------- 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]> Advisors: Carol-Jane Stolow, Director William S. Stolow, President The Lyme Disease Network of New Jersey (908-390-5027) Chief Proofreader: Ed Mackey <[email protected]> ----------------------------------------------------------------------------- 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]. -----------------------------------------------------------------------------