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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
FEATURE: Treatment Protocol, By Philip Paparone, MD


*                  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.



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!


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.


State of New Jersey
BILL: 1992 NJ S.B. 1297
SYNOPSIS:  Requires health insurers to cover  Lyme disease.

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
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.


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
    2)   What are my options for further treatment?  Where can I
         find information on treatments for chronic lyme

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

Cefuroxime                      500mg bid for 20 days

Azithromycin                    500mg once daily for 7 days

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

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

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

"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

"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
Western Blot - A more precise antibody test.


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