This is an interesting article and makes reference to the questions you ask.
The Unknown Epidemic
By DJ 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
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.
Lyme is sometimes called "the Great Imposter" because it can manifest such a
broad range of symptoms that it is often misdiagnosed as other diseases.
Charles Ray Jones, M.D., of New Haven, Connecticut, says that many people
who have Lyme "are thought to have multiple sclerosis, ALS [Lou Gehrig's
disease], chronic fatigue syndrome, fibromyalgia, Alzheimer's" and other
debilitating conditions. Dr. Harris has worked with physicians who have seen
Lyme complications "ranging from neuropsychiatric problems, such as brain
fog or even bipolar disorder, to ophthalmological and neurological problems.
Headaches and heart problems (Lyme carditis) are common." Joanne Whitaker,
M.D., Research Director of the Bowen Research & Training Institute in Palm
Harbor, Florida, believes that Lyme is at the base of both chronic fatigue
syndrome and fibromyalgia-the difference between the two being related to
the virulence of the organism and the individual immune response. All three
illnesses were "discovered" around the same time in the 1980s.
Katrina Tang, M.D., H.M.D., Medical Director of the Century Wellness Clinic
in Reno, Nevada, says, "[Lyme] eludes many doctors because it can mimic many
other diseases. This poses a public health risk, because doctors may treat
the wrong disease or not find the true cause, thereby delaying treatment."
Delaying treatment can be disastrous. In later stages, writes Joseph J.
Burrascano, M.D., of East Hampton, New York, "Lyme also includes collateral
conditions that result from being ill with multiple pathogens, each of which
can have a profound impact on the person's overall health. Together, damage
to virtually all bodily systems can result."
Marylynn S. Barkley, Ph.D., M.D., Associate Professor (Neurobiology,
Physiology and Behavior) at the University of California, Davis notes that
around 15% of Lyme patient develop "serious problems. For those individuals,
chronic debilitation and extreme pain can change their lives dramatically.
A few individuals have committed suicide due to their inability to tolerate
the extreme pain coupled with the frustration of being unable to obtain
follow-up antibiotic therapy."
Officially, the U.S. Centers for Disease Control and Prevention (CDC)
reports that there have been less than 160,000 confirmed cases of Lyme
disease since 1980. This contrasts sharply with the estimates of those
physicians treating patients with degenerative diseases. Says Dr. Harris,
who is a director of the International Lyme and Associated Diseases Society
(ILADS), and whose laboratory employs a number of tests for diagnosing Lyme,
"Lyme is grossly under-reported. In the U.S., we probably have about 200,000
cases per year" W Lee Cowden, M.D., of Richardson, Texas, a world-renowned
consultant and integrative medicine educator; states that "There are very
few symptoms where you shouldn't consider Lyme, especially given that a
quarter of the U.S. population may be affected. More than 50% of chronically
ill people may have Lyme contributing to their condition." Dr. Whitaker, who
specializes in advanced testing methods for Lyme, suspects that the great
majority of people in the U.S. are infected with Bb-because the hundreds of
tests she performs every year now invariably come out positive.
All the other clinicians with whom the authors spoke agreed that Lyme has
reached epidemic proportions. How is this possible? Obviously 25% of
Americans haven't been bitten by one of a select few species of ticks. The
answer is that Lyme is not transmitted just by ticks.
"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
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
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 Mattnan, 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
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.
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.
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 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
The doctors the authors interviewed all had their own testing preferences,
but each insisted that Lyme was a clinical diagnosis, only supported by
"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,
some-times 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."
Every authority the authors spoke with considered antibiotics the primary
treatment for Lyme, but that the accepted "standard" antibiotic therapies
(of a duration and type acceptable to insurance carriers, HMOs, mainstream
physicians, etc.) are insufficient.
Lyme is sometimes classified as having different stages early vs. chronic,
or localized vs. disseminated. "The biggest distinction is between
early-stage and chronic," says Dr. Whitaker. "In the beginning, many organ
systems are invaded while the patient may experience no symptoms. As time
goes on we see multiple system symptoms involving the whole body, especially
the central and peripheral nervous systems, and the musculoskeletal, skin
and circulatory systems. Many Lyme cases are diagnosed by psychiatrists.
Dr. Brian Fallon is studying cognitive and other neuropsychiatric
The problem, says Dr. Barkley, is that "There isn't an adequate treatment
model. So if the physician says you have Lyme, and gives you the standard
antibiotic therapy, and you aren't better; the thinking is that you must
have something else wrong, such as an autoimmune problem, or else you didn't
have Lyme disease in the first place. Short-term oral antibiotics are
effective in treating localized Lyme, but with disseminated Lyme, the
requirement for either intravenously administered antibiotics or long-term
oral antibiotics becomes common."
In his regular practice, Dr. Bock has always tried to avoid antibiotics.
But, he says, "If you go back to syphilis, the history of spirochetes is one
of being able to hide out and then reappear, causing severe, devastating
neurological illness. This isn't a risk I would recommend taking with Bb."
Most of the physicians recommended an immediate short course of antibiotics
for anyone bitten by a deer tick, or who exhibits certain symptoms. "It
takes a while for the immune system to produce antibodies," says Dr.
Barkley. "So Lyme testing-other than by a skin biopsy from an active rash
within 14 days following the bite may yield inconclusive results. Symptoms
of Lyme include fever night sweats, fatigue or a flu-like illness that does
not improve within three to five days." Other symptoms reported by
physicians include stiff neck, pro-longed joint and muscle pain, heart
palpitations, brain fog or severe headaches.
"I tally all the initial symptoms and signs, and try to weed them out one by
one," says Dr. Jones. However, he cautions, "Treatment duration varies with
each individual. If one stops antibiotics prematurely, a more resilient Bb
infection will develop that will cause more brain and body injury."
None of these physicians relied solely on antibiotics; they used immune
system-strengthening protocols as well.
"The immune system may be less able to respond if the person is having a
hard time clearing toxins," says Dr. Bock. "You're going to add to this
overload by taking antibiotics. For general immune support, we've used
maitake and reishi mushrooms, ginseng and astragalus.
"Natural medicine approaches include anti-inflammatory eicosanoids such as
fish oil and borage seed oil; high-potency multivitamin and mineral
formulas; CoQ10 and other mitochondrial nutrients; cognitive enhancement
substances such as carnitine and certain herbal extracts. Acupuncture
combined with physical therapy can often reduce pain. I have posted an
online article that discusses these alternative approaches in more depth at
my website, www.PatientsAmerica.com ."
Dr. Cowden recited a litany of natural immunotherapy agents. His
recommendations include the following: "Transfer factor-ImmuneFactor 2 and
CellResponse are good products; Thymic Protein A; medicinal mushroom
combinations such as ImmPower AHCC; glyconutrients like Ambrotose;
arabinogalactan (Larix), an immune-enhancing polysaccharide; and Astragalus
Supreme." Dr. Cowden also notes that "if you use a pharmaceutical
antibiotic, you need to use an herbal antifungal to reduce stress on the
liver and kidneys."
"Avoid sugars because they feed these bugs," advises Dr. Cowden. "It is
most important to balance saliva pH between 6.7 and 70. Sufficient dietary
minerals bring pH up if low. Reducing stress will raise pH; so will
identifying and removing food, nutrient and inhalant allergies. You should
identify your metabolic type and then follow the appropriate diet.
Grapefruit seed extract and certain other substances, including vitamin C,
can interfere with tissue uptake of the antibiotics and make them less
effective. Take as few non-essential supplements as possible - consult with
a physician knowledgeable about nutrition-and time them as far from the
antibiotic as possible."
Dr. Bock reminds us that, "It's also important to support the endocrine
system. In some cases, cognitive abilities improved when subclinical
hypothyroid problems were treated. Chronic stress can cause suppression of
the immune system Manage the effects of stress on the body: Use relaxation
techniques and biofeedback. Find a group for emotional support."
In his practice, Dr. Jones has found that, "Taking acidophilus and other
probiotics is always important. [Antibiotics kill the intestinal flora
necessary for digestion and immune functions; probiotics like lactobacillus
re-inoculate the intestines.] Stay away from or severely limit alcohol
intake. Develop a healthier standard of living. Rest is needed. We've found
that a parent who has a child with Lyme is often feeling guilty. One has to
work with these difficult feelings. I emphasize that it's not a parent's
fault; you can't protect your child from Lyme exposure."
None of the experts the authors consulted claimed to completely understand
Lyme or to be able to completely cure it in every case. Some people infected
with Bb may never manifest the symptoms of Lyme. Others become seriously ill
soon after they are infected. Treatment must be customized from patient to
patient and can vary widely. "Certain people may clear Lyme without
antibiotic therapy," says Dr. Barkley. "However; the other extreme is that
even with antibiotics, some people with Lyme have died from this disease."
Says Dr. Jones, "We have seen children from one day old to 18 years of age
who have required from three months to six years of antibiotic therapy. We
have had some patients on antibiotic therapy for very long periods, and
we've done follow-ups for as long as 15 years post treatment. The criterion
for stopping therapy is that one must be totally Lyme disease - symptom free
for two months, with no Lyme flare induced by another infection or menses
and no 'Herx' [Jarisch-Herxheimer reaction of the body manifesting symptoms
in response to dying Bb]."
The situation is quite difficult now. "It's sad where we are with this
disease," says Dr. Cowden. "You're supposed to go through the 'standard'
treatment first before turning to alternative treatments. We need to turn
this around, into a logical, integrated approach."
The impetus for this change must come not only from the patients who have
been classically infected by a tick bite, but by those who suffer from
"unexplained" muscle and joint pain, unrelieved fatigue and cognitive
impairment-and by those who are afflicted with degenerative diseases that
can be caused or aggravated by Lyme. Presently, such patients will find few
doctors experienced in Lyme, because of the newness of the disease and lack
of understanding about it-and because those doctors who take a comprehensive
approach to diagnosing and treating Lyme are commonly harassed by state
medical boards, insurance companies and HMOs.
It is up to patients to actually educate their doctors about the inadequacy
of standard testing and the necessity for using techniques such as
electrodermal screening and darkfield microscopy. And it is up to patients
to become politically involved with Lyme advocacy groups, such as those
listed here, to fight for their right to proper medical care. The earlier
Lyme is diagnosed, the easier it is to cure. For people with chronic Lyme
symptoms, the road to recovery can be long. With comprehensive integrative
treatment, however - a combination of the best of conventional and
alternative medicine protocols - their health can be continually and