Subject: LymeNet Newsletter vol#2 #08

From: [email-masked] (Marc Gabriel)
Date: 25 May 1994 23:56:04 GMT

[ Article crossposted from nj.general,ny.general,pa.general,misc.misc,rec.backcountry ]
[ Author was Marc Gabriel ]
[ Posted on 25 May 1994 02:04:41 GMT ]

Attached is a copy of the latest issue of the LymeNet Newsletter.  This 
week's special issue is an analysis of a ground-breaking study that -- 
for the first time -- looks at the actual rate of recovery of Lyme 
disease patients.  The picture is not pretty.  Subscription info is in 
the .sig.

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

IDX#                Volume 2 - Number 08 - 5/25/94
IDX#                            INDEX
IDX#
IDX#                   ***** SPECIAL ISSUE *****
IDX#
IDX#  I.   LYMENET ANALYSIS: The Experts Speak
IDX#  II.  J RHEUMATOL: LD: An Infectious and Postinfectious Syndrome
IDX#  III. How to Subscribe, Contribute, and Get Back Issues
IDX#

QUOTE OF THE WEEK:

        "The persistence of tired Lyme disease myths despite
         overwhelming evidence of their inadequacy is perhaps
         the greatest obstruction to progress in the field.
         Although these myths exist in all facets of Lyme
         disease research, they are still most evident in the
         area of treatment, where legitimate concern about
         the sometimes indiscriminate use of antibiotics has
         apparently hardened into an across-the-board
         anti-treatment zealotry."

        -- Brenner et. al. (See Section I)

I.    LYMENET ANALYSIS: The Experts Speak
-----------------------------------------
Sender: [email-masked]
Authors: Carl Brenner, Marc Gabriel, Frank Demarest, John O'Donnell

                              *****=*****

                      THE EXPERTS SPEAK . . .

	"For every debilitating chronic case of Lyme disease,
         there are many more easily treated and quickly cured,
         experts say.
	"While no one denies that some victims of Lyme disease
         do suffer chronic symptoms that involve the joints,
         heart and central nervous system, doctors say that for
         the vast majority, Lyme is no more serious than a
         bout of the flu.
	"The public has a 'godawful sense of the horrors,' said
         Dr. Leonard Sigal of the Lyme Disease Center at the
         Robert Wood Johnson School of Medicine in New Brunswick,
         N.J. 'You don't see the stories of the people who get
         better.'
	"The number of people who suffer permanent damage is
         'fairly small,' said Dr. Robert T. Schoen, co-director
         of the Lyme Disease Center at Yale University School
         of Medicine... "
      -- Barbara J. Durkin "For most, treatment is easy"
         (In The Westchester County, NY, Gannett
         Reporter Dispatch, May 18, 1992)

        "Nearly all Lyme disease patients can be effectively
         treated with an appropriate course of antibiotic therapy."
      -- Lyme Disease: The Facts, The Challenge
         (NIH pamphlet on Lyme disease, 1992)

        "[Lyme] patients treated in the early stages with
         antibiotics usually recover rapidly and completely.
         Most patients who are treated in the later stages of
         the disease also respond well to antibiotics, and
         full recovery is the rule."
      -- Lyme disease: a public information guide from the
         Centers for Disease Control (no date on literature)

                              *****=*****

                   . . . BUT THE DATA SAY OTHERWISE

        "Only ... 38% of the patients were asymptomatic at
         followup [1 to 8 years after treatment for Lyme disease]
         ... Despite recognition and antibiotic treatment of
         Lyme disease, significant infectious and postinfectious
         sequelae are common."
      -- Asch ES, Bujak DJ, Weiss M et al. Lyme disease: an
         infectious and postinfectious syndrome. Journal of
         Rheumatology 1994;21:454-61.

                              *****=*****

A recent study published in the Journal of Rheumatology [1] has
turned conventional wisdom on its ear and confirmed many Lyme disease
patients' suspicions about the true rate of full recovery after
treatment for Lyme disease.  Contrary to the oft- stated bromide that
the overwhelming majority of Lyme patients return to full health and
normal activity after treatment, the long term followup study,
authored by researchers at New York Medical College, indicates that
the majority of Lyme patients in fact experience ongoing symptoms of
varying severity for years after treatment.  In the study cohort,
these symptoms lasted up to eight years -- the maximum elapsed period
between treatment and followup -- and there is every indication that
they are permanent and represent either the irreversible consequences
of previous Lyme infection or, in some cases, ongoing active infection.

All of the 215 patients who were enrolled into the study met extremely
rigorous diagnostic criteria for Lyme disease -- stricter even than
the CDC case definition requirements.  All were seropositive, and
those patients who did not have erythema migrans had to have
involvement of at least 2 organ systems to be included.  Thus, one of
the convenient mechanisms often used to attack the frequent reports
of incomplete post-treatment recovery -- the questioning of the
original diagnosis -- was directly addressed and neutralized.

In the past, persistent symptoms after treatment for Lyme disease have
been dismissed by many researchers as fictitious or overblown, or in
any case rather minor and not threatening to the patient's quality of
life.  Until recently, this line has unfortunately been echoed by our
national health agencies, who seem intent on underplaying both the
frequency and severity of long term post-treatment sequelae of B.
burgdorferi infection.  The fact that there have been virtually no
long term followup studies in Lyme disease has made it easy to
perpetuate this falsehood.  (The one exception is the original
cohort of patients from Lyme, CT and environs in whom the disease was
first recognized, many of whom had gone untreated for years and would
thus be expected to have a disproportionate share of poor outcomes.)
We hope that with the publication of these new data, the myth of
nearly universal full recovery will be put to rest.

A less surprising finding of Asch et al. was the correlation between
early disease detection and a positive treatment outcome: "Those
patients treated within 4 weeks of onset of their first symptoms of
Lyme disease, regardless of the stage at presentation, had a higher
frequency of complete recovery than those patients whose treatment
was delayed beyond 4 weeks."  This confirms the anecdotal observations
of many clinicians who treat Lyme disease, and should serve as an
important warning to those researchers who advocate a policy of
"watchful waiting" when a patient has been bitten by an Ixodes tick
and disease transmission is uncertain [2,3].  Such a strategy may be
condemning infected patients to a lifetime of chronic illness.

Official denial of the seriousness of Lyme disease and its long term
sequelae has had several negative consequences for Lyme patients.
It has kept research dollars for Lyme disease at levels incommensurate
with the disease's threat to public health; this shortfall in research
funds has in turn led to the neglect of chronic Lyme disease as a
critical research topic.  A situation has arisen where there are
insufficient resources (and, we fear, interest) to even carry out the
research necessary to define the scope of the problem.  In addition,
the pervasiveness of the lie that "almost all Lyme patients are
completely cured" has caused no small amount of grief to the many
individual Lyme sufferers who experience incomplete recovery and who
must often wonder what it is about them (their character? their
fortitude?) that accounts for the "uniqueness" of their situation.
It turns out that their situation isn't unique after all.

The persistence of tired Lyme disease myths despite overwhelming
evidence of their inadequacy is perhaps the greatest obstruction to
progress in the field.  Although these myths exist in all facets of
Lyme disease research, they are still most evident in the area of
treatment, where legitimate concern about the sometimes indiscriminate
use of antibiotics has apparently hardened into an across-the-board
anti-treatment zealotry.  Certain researchers have become so intent
on attacking the use of longer antibiotic treatment regimens that
they end up ignoring their own observations on its efficacy.
This phenomenon may have reached its zenith with the 1992 publication
of a paper on Lyme disease and fibromyalgia in the Annals of Internal
Medicine [4], in which the authors clearly noted that a majority of
15 post-treatment Lyme disease patients with persistent symptoms
responded positively to retreatment with antibiotics and did not
respond to treatment for fibromyalgia syndrome.  Somehow, they still
managed to convince themselves that the patients had fibromyalgia
without active Lyme disease.

Similar stubbornness is evident in a bizarre cost-effectiveness
analysis published in the same journal last year [5].  In this study,
the authors concluded that patients who present to their physician
with pain, fatigue and a positive Lyme serology should be denied
antibiotic treatment.  This conclusion was aided by the authors'
willful misuse of CDC data on the incidence of Lyme disease (which
completely skewed their figures on the relative incidence of Lyme
disease and fibromyalgia) and several other gross conceptual and
methodological errors.  Not only were the CDC numbers equated with
the true incidence of Lyme disease, but the distortion was compounded
by the fact that the figures used for the study had been compiled in
1987 (when the recorded incidence was about a third of what it was
last year).  The study's authors had to know that they were cooking
the books -- even the CDC acknowledges the strictness of their case
definition and the problem of underreporting -- but they were intent on
reaching a particular conclusion and apparently had no qualms about
massaging the data to obtain the desired result.  We were appalled to
see this "analysis" cited by NIAID in response to a recent House
Appropriations Committee directive to investigate the etiology and
appropriate treatment for chronic Lyme disease. They should know
better.

The very real difficulties posed by Lyme disease and the long term
morbidity associated with it will not go away by denying that the
problem exists or by taking refuge in phony cost-effectiveness
analyses.  Asch et al. have made an important contribution by hinting
at the scope of the problem.  We hope that the CDC and NIH are
cognizant of these findings and will relegate the "Almost all patients
exhibit complete recovery" line to the trash heap -- where it can join
"Late Lyme disease is invariably seropositive," "Lyme disease always
causes objective clinical findings" and the many other quaint
misconceptions of yesteryear.

REFERENCES

1] Asch ES, Bujak DI, Weiss M et al. Lyme disease: an infectious and
postinfectious syndrome. J Rheumatol 1994;21:454-61.

2] Steere AC. Lyme disease (reply to letter of KB Liegner).
N Eng J Med 1990;322;475.

3] Shapiro ED, Gerber MA, Holabird NB, et al. A controlled trial of
antimicrobial prophylaxis for Lyme disease after deer-tick bites.
N Eng J Med 1992;327:1769-73.

4] Dinerman H, Steere AC. Lyme disease associated with fibromyalgia.
Ann Intern Med 1992;117:281-5.

5] Lightfoot RW, Luft BJ, Rahn DW, et al. Empiric antibiotic treatment
of patients with fibromyalgia and fatigue and a positive serologic
result for Lyme disease: a cost-effectiveness analysis.
Ann Intern Med 1993;119:503-9.

*****=*****

II.   J RHEUMATOL: LD: An Infectious and Postinfectious Syndrome
----------------------------------------------------------------
AUTHORS:  Asch ES, Bujak DI, Weiss M, Peterson GE, Weinstein A
REFERENCE: J Rheumatol 1994;21:454-61
ORGANIZATION: New York Medical College, Vallhala, NY, USA and
              Cornell Medical College, New York, NY, USA
ABSTRACT:

OBJECTIVE: To determine chronic morbidity and the variables that
influence recovery in patients who had been treated for Lyme disease.
METHODS: Retrospective evaluation of 215 patients from Westchester
County, NY, who fulfilled Centers for Disease Control case definition
for Lyme disease, were anti-Borrelia antibody positive and were
diagnosed and treated at least one year before our examination.
RESULTS: Erythema migrans had occurred in 70% of patients, neurological
involvement in 29%, objective cardiac problems in 6%, arthralgia in 78%
and arthritis in 41%.  Patients were seen at a mean of 3.2 years after
initial treatment.  A history of relapse with major organ involvement
had occured in 28% and a history of reinfection in 18%.  Anti-Borrelia
antibodies, initially present in all patients, were still positive in
32%.  At followup, 82 (38%) patients were asymptomatic and clinically
active Lyme disease was found in 19 (9%).  Persistent symptoms of
arthralgia, arthritis, cardiac or neurological involvement with or
without fatigue were present in 114 (53%).  Persistent symptoms
correlated with a history of major organ involvement or relapse but not
the continued presence of anti-Borrelia antibodies.  Thirty-five of the
114 (31%) patients with persistent symptoms has predominantly
arthralgia and fatigue.  Antibiotic treatment within 4 weeks of disease
onset was more likely to result in full recovery.  Children did not
significantly differ from adults in disease manifestations or the
frequency of relapse, reinfection, or complete recovery.
CONCLUSION: Despite recognition and treatment, Lyme disease is
associated with significant infectious and postinfectious sequelae.

*****=*****

III.  HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES
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--
------------------------------------------------------------------------
                           Marc C. Gabriel
                 [email-masked]   [email-masked]   
                VOICE: 908-789-7346   FAX: 908-789-0028
------------------------------------------------------------------------
 I'm still thinking about the witty one-liner I'm supposed to put here.

--
--
------------------------------------------------------------------------
                           Marc C. Gabriel
                 [email-masked]   [email-masked]   
                VOICE: 908-789-7346   FAX: 908-789-0028
------------------------------------------------------------------------
 I'm still thinking about the witty one-liner I'm supposed to put here.