Part 1 of 2 (Part
2)
by D. J. Fletcher and
Tom Klaber
Millions of people who are diagnosed
with multiple sclerosis, fibromyalgia, Alzheimer's, chronic
fatigue syndrome and other degenerative diseases could have
Lyme Disease causing or contributing to their condition.
Forget just
about everything you think you know about Lyme disease.
It is not a rare disease, it is epidemic.
It is not just tick-borne; it can also be transmitted by
other insects, including fleas, mosquitoes and mites --
and by human-to-human contact.
Neither is Lyme usually indicated by
a bull's-eye rash; this is found in only a minority of cases.
And, except when it is diagnosed at a very early stage,
Lyme is rarely cured by a simple course of antibiotics.
Finally, Lyme is not just a disease that makes you "tired
and achy" -- it can utterly destroy a person's life
and ultimately be fatal.
Lyme disease, in fact, might be the
most insidious -- and least understood -- infectious disease
of our day. "If it
weren't for AIDS," says Nick Harris, Ph.D.,
President of IgeneX, Inc., a research and testing laboratory
in Palo Alto, California, "Lyme
would be the number one infectious disease in the United
States and Western Europe."
Lyme disease was first recognized in
the United States in 1975, after a mysterious outbreak of
arthritis near Lyme, Connecticut. It wasn't until 1982 that
the spirochete that causes Lyme was identified. It was subsequently
named Borrelia burgdorferi (Bb), in honor of Willy Burgdorfer,
Ph.D., a pioneer researcher.
Many now see the disease, also called
Lyme borreliosis, as more than a simple infection, but rather
as a complex illness that can consist of other co-infections,
especially of the parasitic pathogens Babesia and Ehrlichia.
Animal studies have shown that in less than a week after
being infected, the Lyme spirochete can be deeply embedded
inside tendons, muscles, tissue, the heart and the brain.
"Of
the more than 5,000
children I've treated,
240 have been born with the
disease,"
says Dr. Jones, who specializes in Pediatric and Adolescent
Medicine. "Twelve children who've been breast-fed have
subsequently developed Lyme.
Bb can be transmitted transplacentally,
even with in vitro fertilization; I've seen eight children
infected in this way. People from Asia who come to me with
the classic Lyme rash have been infected by fleas and gnats."
Gregory Bach, D.O., presented a study
on transmission via semen at the American Psychiatric Association
meeting in November, 2000. He confirmed Bb DNA in semen
using the PCR test (Polymerase Chain Reaction).
Dr. Bach calls Bb "a brother"
to the syphilis spirochete because of their genetic similarities.
For that reason, when he treats a Lyme patient in a relationship,
he often treats the spouse; otherwise, he says, they can
just pass the Bb back and forth, reinfecting each other.
Dr. Tang adds other avenues of infection:
"Transmission may also occur via blood transfusion
and through the bite of mosquitoes or other insects."
Dr. Cowden contends that unpasteurized goat or cow milk
can infect a person with Bb.
Unreliable
Testing
What is the reason for the discrepancy
between the government's statistics and the experience of
front-line physicians? Says Dr. Jones, "The CDC criteria
was developed only for surveillance; it was never meant
for diagnosis.
Lyme is a clinical diagnosis. The test
evidence may be used to support a clinical diagnosis, but
it doesn't prove one has Lyme. About 50% of patients I've
seen have been seronegative [blood test negative] for Lyme
but meet all the clinical criteria."
Most of the standard tests used to detect
Lyme are notoriously unreliable. Explains Dr. Harris, "The
initial thing patients usually get is a Western Blot antibody
test. This test is not positive immediately after Bb exposure,
and only 60% or 70% of people ever show antibodies to Bb."
Dr. Cowden favors two tests developed
respectively by Dr. Whitaker and by Lida Mattman, Ph.D.,
Director of the Nelson Medical Research Institute in Warren,
Michigan. However, both
of these tests have yet to win FDA approval for
diagnostic use.
Explains Dr. Whitaker, "We have
developed the Rapid Identification of Bb (RIBb) test. A
highly purified fluorescent antibody stain specific for
Bb is used to detect the organism. This test provides results
in 20 to 30 minutes, a key to getting the right treatment
started quickly."
Dr. Mattman's culture test also uses
a fluorescent antibody staining technique which allows her
to study live cultures under a fluorescent microscope. "When
a person is sick," says Dr. Mattman, "antibodies
get tied up in the tissues, in what is called an immune
complex, and are not detected in the patient's blood plasma.
So it's not that the antibody isn't
there or hasn't been produced; it just isn't detectable.
Thus, the tests which are based on detecting antibodies
give false negatives." The tests of Drs. Whitaker and
Mattman do not look for antibodies but look for the organism,
in the same way that tuberculosis is diagnosed.
When Dr. Jones treats a Lyme patient
who's in a relationship, he often treats the spouse as well;
otherwise, he says, they can just pass the Bb back and forth,
reinfecting each other.
There are several reasons why Lyme is
so difficult to test for -- and difficult to treat. Take,
for instance, the bull's-eye rash -- called Erythma migrans
-- that is supposed to appear after being bitten by a tick
carrying the Lyme spirochete.
Every doctor with whom the authors spoke
said that this
rash appears in only 30% to
40% of infected people.
Dr. Jones said that fewer than 10% of the infected children
he sees exhibit the rash.
A Master
Of Elusiveness
More importantly, Lyme
can disseminate throughout the body remarkably rapidly.
In its classic spirochete form, the bacteria can contract
like a large muscle and twist to propel itself forward:
because of this spring-like action it can actually swim
better in tissue than in blood.
It can travel through blood vessel walls
and through connective tissue. Animal studies have shown
that in less than a week after being infected, the Lyme
spirochete can be deeply embedded inside tendons, muscle,
the heart and the brain. It invades tissue, replicates and
destroys its host cell as it emerges. Sometimes the cell
wall collapses around the bacterium, forming a cloaking
device, allowing it to evade detection by many tests and
by the body's immune system.
The Lyme spirochete (Bb) is pleomorphic,
meaning that it can radically change form. The photo on
the left shows a colony of Bb both in spirochete and round
cell wall deficient (CWD) forms.
In the CWD form, the Lyme organism can
lack the membrane information necessary for the immune system
and antibiotics to recognize and attack it. Dr. Lida Mattman
states that cell wall deficient organisms are more properly
called cell wall divergent.
The Lyme spirochete can not only change
from the classic spiral into a round form, but can change
back again into a spiral. The middle photo shows this process
occurring in the area shown by the arrow.
But the main reason that Lyme is so
resistant to detection and therapy is that it can radically
change form -- it is pleomorphic. Explains Dr.
Whitaker, "We have examined blood samples from over
800 patients with clinically diagnosed Lyme disease with
the RiBb test and have rarely seen Bb in anything but a
cell wall deficient (CWD) form.
The problem is that a CWD organism doesn't
have a fixed exterior membrane presenting information --
a target -- that would allow our immune systems or drugs
to attack it, or allow most current tests to detect it."
As a CWD organism, says Dr. Mattman,
Bb is extremely diverse in its appearance, its activity
and its vulnerability. Adds Dr. Cowden, "Because Bb
is very pleomorphic, you can't expect any one antibiotic
to be effective. Also, bacteria share genetic material with
one another, so the offspring of the next bug can have a
new genetic sequence that can resist the antibiotic."
Clinical
Diagnosis
The doctors the authors interviewed
all had their own testing preferences, but each insisted
that Lyme was a clinical diagnosis, only supported by testing
-- and retesting.
"We look at the patient's history
and symptoms, genetic tendencies, metabolism, past immune
function problems or infection," explains Dr. Bock,
"as well as history and duration of antibiotic treatment,
co-infection, nutritional and micronutritional status and
also psychospiritual factors."
Dr. Tang uses all of the above, but
also analyzes the blood using darkfield microscopy -- although
she cautions that not spotting the spirochete doesn't mean
that the patient does not have Lyme disease.
Dr. Cowden also employs muscle testing
and electrodermal screening. Dr. Burrascano has developed
a weighted list of diagnostic criteria and an exhaustive
symptom checklist.
"In pediatric screening especially,"
says Dr. Jones, "we ask about sudden, sometimes subtle,
changes in behavior or cognitive function -- such as losing
skills or losing the ability to learn new material; not
wanting to play or go outside; running a fever; being sensitive
to light or noise.
If one has joint phenomena, we know
that an inflammatory or infectious process is present. A
hallmark of Lyme is fatigue unrelieved by rest."
For women, Dr. Barkley has found that
testing around the time of menses increases
the probability of discovering the presence of Bb.
"Women with Lyme have an exacerbation of their symptoms
around menses," she explains.
"The decline of both estrogen and
progesterone at the end of the menstrual cycle is associated
with the worsening of the patient's Lyme symptoms."
Government
Persecution Of Lyme Disease Doctors
Physicians who treat Lyme disease in
ways other than the established standard of care -- which
means a course of antibiotics lasting no more than 30 days
-- risk invasive, exhausting, time-consuming investigation
by state licensing agencies, leading to possible loss of
their right to practice medicine.
Activists report that 50
physicians
in Texas, New York, Oregon, Rhode Island, New Jersey, Connecticut
and Michigan have been investigated,
disciplined and/or stripped of their licenses over the past
three years because of their approach to healing Lyme disease.
This past November 9th, 500 patients
who got well after their doctors used alternative or complementary
methods joined in a protest rally in New York City. They
rose to defend Dr. Joseph Burrascano, who has treated an
estimated 7,000 cases.
As this story was heading for publication,
New York's Office of Professional Medical Misconduct was
engaged in what activists call an unjustified fishing expedition
that will probably last for months and will allow state
bureaucrats to hunt for any irregularity that could be used
to damage Dr. Burrascano.
State medical
boards seem to be trying to protect the medical insurance
industry rather than patients.
In most cases, effective alternative/complementary
treatments require much more doctor time per patient and
often include a broad range of medicines and supplements
consumed over a much longer period of time, costing much
more money than the current standard of care accepted by
medical insurers.
But at the rally, patients angrily rejected
the medical board's suggestion that their cases demonstrated
anything negative about their physician. In fact, they all
insisted, it was Dr. Burrascano whose knowledge, patience
and care finally freed them from the pain and debilitation
that had been ruining the quality of their lives.
Part
2
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