Old KQED radio show on Lyme Disease: Barbour, Stricker

KQED radio show on Lyme Disease excerpt from transcript:

Tamara Keith:
Fisher-Smith's story is similar to that of many Lyme disease patients
in
California. Only a handful of physicians specialize in the disease
and,
for most doctors, it is low on the list of possible diagnoses.

Dr Raphael Stricker:

The Lyme disease is a punch line for many physicians. It's..it's not
something that exists. It's not something to be taken seriously and it

is, in fact, a very serious disease and it's something that is a
serious
problem in the state and needs to be taken seriously.

Tamara Keith:
Dr Raphael Stricker has about 200 Lyme disease patients in his San
Francisco practice.

Dr Raphael Stricker:

Unfortunately, the doctors in this state are unfamiliar with Lyme
disease. They think it's an east coast problem that doesn't exist here

and therefore making the diagnosis of the disease is very difficult and

patients can be very frustrated in that respect.

Tamara Keith:

Unless it's caught early, Lyme disease can be very hard to diagnose.
Lab tests frequently come back with both false positives and false
negatives and the disease presents with so many different symptoms
Stricker says it's been dubbed the great imitator.

Dr Raphael Stricker:

There can be muscle aches and joint pains. There can be, ah, severe
fatique, very much like chronic fatigue syndrome. Um, there can be all

kinds of funny symptoms like muscle twitching and jaw pain and things
that don't, you know, don't seem to be associated directly with the
disease.


Tamara Keith:
But while Stricker thinks the disease is underdiagnosed, many in the
mainstream medical establishment believe the opposite. Dr. Alan
Barbour
is a professor of medicine and microbiology at UC Irvine and has
studied
the disease for 20 years. He says Lyme disease has become an easy
answer for some patient's mysterious ailments.

Professor Alan Barbour:

There are a number of people.......out there who have an illness.
They're..they're feeling ill. They're..they're looking for a cause for

that illness, and..and sometimes, ah, it's..it's being called Lyme
disease.

Tamara Keith:
Many doctors now see Lyme disease more as a syndrome than as a
legitimate illness. Some physicians are actually reluctant to diagnose

the disease because they don't want to be labeled Lyme doctors, and
that's a problem for the few people who really do have Lyme disease,
says Barbour.

Professor Alan Barbour:

It's like the boy who cries wolf, is that after awhile a lot of people
don't pay attention to him anymore. Ah, and..and there's no doubt that

Lyme disease occurring here. There's, ah, been some, ah, very serious
cases in northern California and..and perhaps in southern California
too, and if..if the end result if..if people are not being taken
seriously, yeah, I think that's a..a problem.

Tamara Keith:
In California Lyme disease is most common in the north coast, in
Mendicino and Sonoma counties, and along the western side of the
Sierra. Only a small percentage of ticks actually carry the Lyme
disease bacteria but cases have been reported in all but one of
California's counties. That means everyone in the state should look
out
for ticks and take necessary precautions. When going to tick habitat
like forests, keep your body covered and wear light colored clothing.
Use tick repellants and, if you're bitten, remove the tick as quickly
as
possible.

For The California Report, I'm Tamara Keith in Auburn.

[end of segment on Lyme disease]

More Barbourisms:

Don't Rush to Treat Suspected Lyme Disease
[Clinician Reviews 8(4):31-32, 1998. © 1998 Clinicians Publishing
Group and Williams & Wilkins.]
--------------------------------------------------------------------------------
"Wait and see" may be a better strategy for patients with tick bites
than ordering expensive testing or prescribing preventive antibiotics.
In Kent County on Maryland's eastern shore -- where Lyme disease is a
particular problem -- researchers from the University of Maryland
School of Medicine, Baltimore, found that more than half of a group of
78 patients seen for tick bites (54.9%) were treated with antibiotics
before a diagnosis was made. The finding was from a chart review of 232
patients who presented in 1995 with tick bites, Lyme disease, or
suspected Lyme disease.

Unwarranted serologic testing and antibiotic prophylaxis boosted the
average charge per patient in the study to $205 -- ranging from an
average of $109 for the patients who had benign tick bites to $569 for
those with confirmed Lyme disease.

"Prophylactic therapy may simply delay onset and obscure diagnosis,"
Fix and colleagues reported in a recent issue of JAMA, noting that the
Centers for Disease Control and Prevention does not recommend Lyme
disease prophylaxis. Instead, clinicians should monitor patients until
early signs of the disease appear, then confirm a diagnosis with
Western blot before initiating therapy.

Some providers may offer treatment beyond current recommendations
because of the high level of publicity about Lyme disease, its possible
complications, and the difficulty of treating it after a certain point,
the authors said. Yet recent studies suggest that "patients are more
willing to accept a wait-and-see strategy than [providers] are willing
to give them credit for," writes Alan G. Barbour, MD, in an
accompanying editorial. Pointing out how infrequently tick bites
actually lead to Lyme disease, he advises clinicians to offer "straight
talking . . . rather than reaching for the lab order *** or
prescription pad."

Lyme Vaccine Probably Not Needed in West By Timothy F. Kirn [Pediatric
News 33(4):25, © 1999 International Medical News Group.]
--------------------------------------------------------------------------------
Sacramento -- The newly approved Lyme disease vaccine is probably not
needed in the Western United States, according to Dr. Alan Barbour, the
investigator who holds the patent for the outer-surface protein A
contained in the vaccine.
The incidence of Lyme disease in Sonoma County, the center of where it
is found in California, is only one-tenth of cases in Westchester
County, N.Y., said Dr. Barbour, a professor of medicine at the
University of California, Irvine.
In the East, children get bitten by the tick that carries Lyme disease
while playing in their backyard or at the park. Adults get bitten while
gardening.
"In California, the exposure is much more episodic." People do not live
so close to the woods, and therefore to deer. Typically, Lyme disease
is acquired in California through outdoor activities like hiking or
camping, said Dr. Barbour at a meeting on infectious diseases sponsored
by the University of California, Davis, Medical Center.
Moreover, not much is known about Lyme disease in California, compared
with the Northeast, said Dr. Barbour. And there may be significant
differences.
For instance, in the East there is one strain of the Lyme-disease
spirochete, Borrelia burgdorferi. But in California at least six
strains have been identified. It is possible that the current vaccine
will not be effective against the important Western strains at all, Dr.
Barbour said.

************************************************************************
He says it may not be needed, but he can change his mind about that at
any time and he has a clear financial conflict of interest. Section
104192 of the Health and Safety Code (the provision governing the
LDAC), says the LDAC - the Lyme Disease Advisory Committee- shall
"advice and make recommendations to the department regarding . . . (a)
The CONTENT . . . of Lyme disease educational materials . . ." Section
104193 states: "The department shall do all of the following: (a)
Establishing a Lyme disease information program that provides
educational materials and information services on Lyme disease to the
general public and the medical community. The Lyme disease information
program shall provide information on all of the following . . . .(3)
THE USE OF VACCINES TO PREVENT THE DISEASE . . . (d) Provide
information to the Occupational Safety and Health Standards Board about
risk factors for exposure to Lyme disease. The Occupational Safety and
Health Standards Board MAY DETERMINE WHICH EMPLOYEES SHOULD BE REQUIRED
TO RECEIVE THE VACCINE AS A CONDITION OF EMPLOYMENT, IN ORDER TO REDUCE
THE POTENTIAL LIABILITY OF EMPLOYERS AND PROTECT THE HEALTH OF
EMPLOYEES." (emphasis added)

*****************************************
Amazon.com Customer Book Reviews of: Lyme Disease : The Cause, the
Cure, the Controversy by Alan G. Barbour Johns Hopkins Health Book,
Hardcover - April 1996 Write an online review and share your thoughts
with other shoppers!
*************************************************************
Avoid this book! (I didn't want to even give it 1 star!), June 9, 2000

Reviewer: Jonathan R. Strong from US This book is typical of the kind
of biased and unsupported reportage about Lyme disease that is
responsible for so many Lyme disease patients NOT being properly
diagnosed and treated. While rich in jargon, the book argues for
definitions of Lyme disease that exclude so many patients with
seronegative, intractable, antibiotic-resistant borreliosis. It is a
disservice to Lyme disease patients everywhere and misleads naive
doctors as well. There are many far better books on the market, and
many websites that are far more informative. This book is a waste
unless you can use it as a case study in the arrogance and
close-mindedness of some doctors. I use my copy as a coaster for drippy
coffee cups.
*************************************************************
Amazon doesn't allow a negative rating, so I gave it 1 Star, May 19,
2000
Reviewer: Kathleen M. Dickson from Southeastern CT, USA Alan Barbour
did not cite a single reference in the book. It is entirely his opinion
and the reason it was published was to hide the truly devastating
epidemic of Lyme and related diseases. It is NOT based on his own
scientific evidence. Any physician that uses book as a resource and
can't see thru the bologna, is a moron. So, this book is for MDs
incapable of original thought and tells very few truths about Lyme
disease. -
*************************************************************
not pleased, December 21, 1999 Reviewer: A reader from West Coast
As a lyme disease patient, I scoured the book looking for help with the
symptoms that I have dealt with on a daily basis for 5 yrs now. I found
no reference to any of these symptoms in this book, nothing to help me
cope with the disease that Dr. Barbour says can be cured with a quick
dose of antibiotics. Do yourself a favor, skip this book. More
information can be found in a few minutes on the internet.
*************************************************************
This book is opinion, not scientific or medical fact, December 20,
1999
Reviewer: R. James Martin from Dallas, Texas
This review shows one star cuz the form wouldn't let me give less.
Dr. Barbour is trying to sell his opinion, and is unable to bolster it
with fact.
*************************************************************
Don't buy. Lacking in scientific support, July 28, 1999 Reviewer: A
reader from North America This book tells a lop-sided viewpoint about
Lyme disease. It is not suported by scientific references nor a
bibliograpy. Maybe his family and friends will support this type of
book - but patients and docs deserve better.If you are looking for
scientific enlightenment or an education about the disease - this book
is a Zero.
*************************************************************
This arrogant, uninformed, MD is not lyme literate, April 1, 1999
Reviewer: A reader from East Haddam, CT Alan Barbour's "It's all in
your head" chapter is especially amusing, causing this reader to laugh
out loud at his arrogance. Better books are Karen
Vanderhoof-Forschner's Everything You Need to Know about Lyme Disease
and Polly Murray's The Widening Circle.
************************************************************************
Excellent resource for the lay reader, January 10, 1999
Reviewer: A reader from Lexington, KY
Lyme disease is the most common vector-borne disease in the US, and can
manifest itself in a variety of symptoms in different individuals. In
easy to understand terms, Dr. Barbour describes aspects of this disease
and its treatment, as well as the causative bacteria and the ticks that
spread it. Due to the variation in Lyme disease symptoms from patient
to patient, the disease is probably both underdiagnosed and
overdiagnosed by different physicians, which has led to the controversy
mentioned in the book's title. Dr. Barbour argues for a restricted
definition of Lyme disease, including specific patient symptoms such as
the characteristic "bulls-eye" rash, arthritis or facial palsy, or, in
their absence, cultivation of bacteria or identification of specific
antibodies in the blood. For that reason, this book will undoubtedly
attract the animosity of those who prefer a much broader definition of
the disease. This controversy is well covered in Dr. Barbour's book,
making it an ideal reference for physicians seeking to understand and
allay their patients' fears. Brian Stevenson, PhD
*************************************************************
Condescending, arrogant and narrow-minded look at Lyme., July 22, 1997
Reviewer:Rita Stanley PhD Ritastan@xxxxxxxxxxxxxxxx (see more about me)

Barbour cleverly reviews some of the literature, dismisses entirely or
denigrates what doesn't support his hypotheses, and ignores clinical
and patient experience to paint a very narrow view of what Lyme is and
is not in his eyes. The insensitivity displayed towards patients is
only driven home by his patronizing condescension. Patient overviews
not only appear over-simple, but faked. Barbour doesn't seem to
understand that his academic posturing may intimidate his colleagues
into buying his ideas, but doesn't necessarily work when trying to sell
his ideas to the thinking public. A book that leaves you snowed,
slapped and spitting. And very glad the author is not your doctor.
Rita L. Stanley, Ph.D
*************************************************************
Like a second opinion doctor who lacks communication skills, July 17,
1997
Reviewer: dporter@xxxxxxx Unfortunately Alan Barbour's book has nothing
to offer the patient, caretaker or public that the 3 best selling Lyme
disease books do. Referring to authors Denise Lang, Polly Murray and
Karen Forschner. For scientific information and hard facts Forschner's
book comes out on top over Barbour's. When reading the book one gets
the feeling as when sitting in a doctors office. Not the compassionate
family doc, nor the reserved but informative specialist, but rather the
second opinion doctor. The one who makes an unsuccessful attempt at not
criticizing your primary physcian while proclaiming his own agenda.
Barbour seems to ride the medical fence concerning the controversies of
Lyme disease, telling us nothing new, in detail or subtly supporting
theories that are not proven, such as Post-Lyme Syndrome. The word
"cure" is curious in the book's title. In conclusion the 258 pages
could easily be condensed to about 25 for actual worthwhile
information.





Just to point out that these have only been known since 1982 and that
there are doubtless more tick-borne pathogenic diseases to be
discovered here in the U.S.

Clin Microbiol Infect 2001 Feb;7(2):80-3

Tick-borne bacterial diseases emerging in Europe.

Parola P, Raoult D.
Unite des Rickettsies, Universite de la Mediterranee, Faculte de
Medecine,
Marseille, France.

Since the identification of Borrelia burgdorferi as the agent of Lyme
disease in 1982, 11 tick-borne human bacterial pathogens have been
described
throughout Europe. These include five spotted fever rickettsiae, the
agent
of human granulocytic ehrlichiosis, four species of the B. burgdorferi
complex and a new relapsing fever borrelia. We present these emerging
diseases and focus on the factors that play a role in the recognition
of new
tick-borne diseases.

.

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