NUTRACEUTICAL BREAKTHROUGHS IN LYME
DISEASE
One Woman’s Journey Through Lyme
by Sue Massie (N.D. Candidate)
Mysterious Symptoms
for Years
At 42, with six lovely children and a wonderful husband, I
thought my life was over! I was very ill with migraines, slurred speech,
difficulty swallowing, atrophy in my muscles, excruciating pain throughout my
body, memory loss, light and noise sensitivity, etc. These are just a few of
the symptoms I suffered from on and off over the years, and they were
progressively getting worse.
Paralyzed From The
Neck Down
I eventually became paralyzed from the neck down, and
developed an ALS-like condition.My husband was also very ill with debilitating
symptoms including “buggy” eyes, migraine headaches, rib pain,
radiating jaw pain, chest compression, fatigue and a racing heart
(intermittent). We spent years trying a number of neurologists, cardiologists
(including Yale), and all kinds of specialists, only to be given a new
diagnosis with each visit. These included TIAs, Grave’s disease, possible
MS, and even stress. Finally a Lyme-literate neighbor suggested my husband
might have Lyme disease. I thought it was a ridiculous idea because my dad was
supposedly the first case diagnosed back in 1980 in Monmouth County, New
Jersey, and he was just fine (or so I thought). Our neighbor handed me the list
of symptoms, and my husband had just about every one of them! I asked for her
doctor’s name and we saw him immediately. He diagnosed my husband with
Lyme disease and treated him with long-term antibiotic therapy. Six months
after his diagnosis, I was also tested and diagnosed, and I started treatment
as well. Five out of six of our children have now been diagnosed with Lyme
disease* and had to be put on a special educational program to help them
with their studies. (Lyme can often affect children and contribute to ADD,
ADHD, memory problems, dyslexia, anger outbursts, fatigue, etc.)
102 ALS Patients
Tested Positive For Lyme - In Treatment
I have talked with over
8,000 people with Lyme. 102 of these cases are ALS-diagnosed patients who
were properly tested for Lyme and came uppositive. I feel that people who are
diagnosed with ALS/Lou Gehrig's disease, Multiple Sclerosis, Alzheimer’s,
Lupus, Fibromyalgia, Chronic Fatigue and many other neurological and
degenerative diseases, could actually have Lyme disease. To date, there is
no definitive, 100% positive test for Lyme disease. However, patients should
request (from a Lyme-literate doctor) to have a PCR test (to determine genetic
material of Borrelia) or a Western Blot blood test (antibody assay) done
by Igenex Labs in California (www.igenex.com). Most doctors are following
the diagnostic protocol of doing a Lyme titre or ELISA test, which are not
accurate. If a patient who has Lyme disease actually tests positive using
the Lyme titre or ELISA test, their doctor would then order a Western Blot
blood test. According to the Center for Disease Control, a patient must have a
minimum of five bands (specific numbers and bands are how they read these
tests), in order to be labeled positive for Lyme by Western Blot. Another
important consideration is that Lyme antibodies must be present for a positive
result, and if the patient has been taking steroids, Advil, Motrin, or other
anti-inflammatories or antibiotics, this could cause a false-negative result.
For this reason, patients should be clear of all OTC’s and prescription
medications for a minimum of six weeks before testing, but even this cannot
guarantee an accurate result.
My Lab Results Would
Have Been Considered Negative
After testing, I only had one band -
number 41, which is the “flagellin” (or tail) of the spirochete,
specific for Borrelia bacteria (Lyme), so I would have been told that I
was negative. Quite often, patients have to be diagnosed by symptoms alone. I
know that most people reading this story probably know of someone who has been
to various doctors, and is suffering without an adequate diagnosis, and people
just label them as being a hypochondriac, etc.
Initial Signs Often
Missed
Lyme disease is not necessarily associated with a
“bull's eye rash and sore knees.” Less than 20% of patients ever see
the tick, and less than 30% get the classic bull's eye rash. Tucking your pants
in your shoes or wearing white so you can see ticks does not provide
full protection. I was the only one in my family that saw a tick on the back of
my hand, and only my one son had a rash (not a bull's eye, but more like
impetigo all over his body). Co-infections are also a big part of Lyme, meaning
not only do the tiny ticks infect you with Borrelia bacteria, but there
is also possible infection with Babesia, Ehrlichia,
Bartonella, mycoplasma, and the conditions of Epstein-Barr and HHV-6
(human herpes-6) viruses.
Dedicated To Helping
Others
I have talked with thousands all over the U.S., including Hawaii
and Alaska, Great Britain, Germany, Australia and even Japan. I am now a
Certified Natural Health Professional. My health has improved about 95% and I
have been off antibiotics for 2 years (after being on a multitude of them for 3
1/2 years). It has been a long journey for me, but now I am dedicated to
helping others heal from Lyme.
For references go to:
www.lymenet.org
www.geocities.com/HotSprings/Oasis/6455/lyme-links.html
www.actionlyme.com
Sue Massie is a
Certified Natural Health Professional, an Iridologist, and is currently
finishing her studies to become a Naturopathic Doctor. Contact: Nature's Garden
of Health, Fair Haven, NJ, phone: (732) 933-4011, email:
suemassie45@aol.com
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Lyme Disease: Nutraceutical
Breakthrough Using TOA-Free Cat’s Claw (Prima Uña De Gato)
Study Shows Pentacyclic Alkaloid Chemotype Uncaria tomentosa
to be Effective In Treating Chronic Lyme Disease (Lyme Borreliosis)
INVESTIGATORS:
William Lee Cowden, M.D.
Hamid Moayad, D.O.
Joan Vandergriff, N.D.
Luis Romero, M.D., Ph.D.
Svetlana Ivanova, M.D., Ph.D.
Control Group
A few patients experienced slight improvement, and the rest remained with
no positive change in their clinical condition at the end of study.
Experimental Group
100% of patients experienced marked clinical improvement; 85% were
seronegative for Lyme disease at the end of study.
Pilot Study Results
A 6-month pilot study was recently conducted with 28 patients suffering
from Advanced Chronic Lyme disease. All the patients tested positive for Lyme
disease utilizing the Western Blot blood test for Borrelia burgdorferi
(Bb, the bacteria that causes Lyme disease. The control groupwas treated
with conventional antibiotic treatment, and at the end of the study, from 14
patients in this group, 3 slightly improved, 3 got worse, and the rest remained
with no change in their clinical condition. The experimental groupwas treated
with Pentacyclic Alkaloid Chemotype Uncaria tomentosa. At the end of the
study, 85% of the patients in this grouptested negative for Bb, and all
the patients experienced a dramatic improvement in their clinical condition. A
full report will be available soon.
Pentacyclic Alkaloid
Chemotype Uncaria tomentosa
also known as TOA-Free Cat's Claw, is a
rare chemotype of a medicinal plant commonly known as Cat's Claw, botanical
name Uncaria tomentosa. Unlike traditional Cat's Claw products, this
chemotype does not contain a groupof chemical antagonists called tetracyclic
oxindole alkaloids (TOAs) that act upon the central nervous system and can
greatly inhibit the positive effect of the pentacyclic oxindole alkaloids
(POAs).
The Pentacyclic Alkaloid
Chemotype Uncaria tomentosa that was utilized in the study contains a
standardized amount of POAs that primarily affect the immune cells responsible
for non-specific and cellular immunity, and demonstrate powerful immune system
modulating properties. According to research conducted in Austria, traditional
Cat's Claw products may contain as much as 80% TOAs, and as little as 1% TOAs
can cause a 30% reduction in immune system modulating properties that POAs
provide.
How Pentacyclic
Alkaloid Chemotype Uncaria tomentosa May Eliminate the
Pathogen
The latest research on Bb shows that it exists in at
least three different forms: the spirochete, the spheroplast (also known as
L-form), and the cyst. During the course of infection, Bb can shift
among these three forms, converting from the spirochete form to the others when
presented with an unfavorable environment (antibiotics, changes in pH of body
fluids in chronic inflammation, etc.), and reverting back to the spirochete
form to grow and reproduce upon being released from naturally aging and dying
infected cells. It is during the growth period after re-conversion to the
spirochete form, as well as in adult spirochete form, that Bb is most
vulnerable and susceptible to antibiotics and natural elimination by the
body’s immune system.
The severity of Lyme
presentation is directly related to the spirochete load: low load results in
mild or even asymptomatic infections. With increased spirochete load from
subsequent repeated infections and/or reactivated dormant infections, the
severity of the disease increases. Higher loads also impair key cells of the
immune system and modify the immune response, thus making the immune system
unable to fight the pathogen. The negative effects on the immune system
increase the longer the spirochetes are present. To prevail in the effort to
fight Lyme disease, it is necessary to not only restore the immune system to
normal functioning, but to boost it as well. Even a normal functioning immune
system is unable to attack and eliminate Bb in all its forms.
The results of research
on TOA-free Chemotype Cat’s Claw demonstrate its powerful immune system
modulating and stimulating properties, along with pronounced anti-inflammatory,
antioxidant, and anti-infectious effects. The diverse spectrum of the
biological activities of TOA-free Chemotype Cat’s Claw is due to its
biologically active compounds. The pentacyclic oxindole alkaloids (POAs)
contained in this Chemotype are generally accepted as the principal
immunomodulating and immunostimulating agents. POAs are actively involved in
the repair of many elements and functional mechanisms of both the innate and
acquired immunity damaged by Bb and other coinfections, assisting in
restoration of structural and functional integrity of the immune system,
enhancing its ability to eliminate the pathogens in a natural way. In addition,
this Chemotype contains quinovic acid glycosides – compounds with strong
natural antibiotic properties (the latest generations of conventional synthetic
antibiotics, “Quinolones,” are based on quinovic acid glycosides),
which further enhance the medicinal effect of TOA - free Chemotype Cat’s
Claw in fighting the infection.
Considering the life-span
of intracellular forms of Bb equivalent to the life-span of the cells
invaded by these forms, they are constantly released into the surrounding
environment upon natural cell death and destruction. The release of
intracellular forms of Bb is gradual over time due to the various
life-spans of various invaded cells. Since about 90% of these forms reside
in various cells (including all blood cells) which have a life-span of 2-3
weeks to 6-8 months, it may be assumed that within a 6-8 month period, a
significant majority of all intracellular forms of Bb will be released
into the environment where they can be successfully attacked by a properly
functioning immune system and a natural powerful antibiotic.
Taking into account all
the above, it can be assumed that continuous use of TOA-free Chemotype
Cat’s Claw over a period of time consistent with the lifespan of several
generations of various infected cells (8-12 months), would more likely result
in gradual killing and eliminating of Bb and co-existing infectious
pathogens, with subsequent reduction of infectious load in the body and
restoration of the person’s health.
Dormancy And
Subsequent Activation Caused By Weakened Immune System
It is believed
that years can pass before symptoms appear in a patient who has been infected
with Bb. In 1998, a study conducted in Switzerland demonstrated that
only 12.5% of the patients that tested positive for Bb developed
clinical symptoms confirming that the infection is often asymptomatic. A
report from Germany outlines the case of a 12 year old boy that developed Lyme
Arthritis 5 years after being bit by a tick. The case indicates that the
latency period between tick bite and onset of Lyme
Arthritis may be as
long as 5 years. All asymptomatic carriers of Bb a re at risk of
developing Lyme disease at some point. Stress, an increasing health concern for
physicians worldwide, may have been the trigger that activated Lyme disease in
a patient in Sweden, a 26 year-old woman with latent Lyme borreliosis that was
concurrently activated with a herpes simplex virus type 1 infection. Immune
suppression by stress may have caused activation of both infections.
Prevalent On 6
Continents
Lyme disease, known as borreliosis in much of the world, is
prevalent on 6 continents and recognized as an epidemic in many countries.
Pentacyclic Alkaloid Chemotype Uncaria tomentosa has been available to
the public in Bulgaria, where a high incidence of Lyme disease exists, since
January 2001. Within 2 months, it became the most widely sold natural medicine
in that country. Dr. Atanas Tzonkov, director of Bulgaria's largest private
medical clinic, has treated thousands of patients with Pentacyclic Alkaloid
Chemotype Uncaria tomentosa. He reports that it has been used
successfully to treat over 100 conditions. A possible theory is that most of
these conditions were actually misdiagnosed Lyme disease or Lyme disease was a
component of the illnesses that the patients were suffering from.
Over 300 Conditions
Connected to Lyme
According to the article Hidden Plague, Forget
About SARS, Lyme disease is spreading steadily, and some experts say it can
elude the standard cure (People Magazine, June 16, 2003). The article tells
the story of a patient suffering from Lyme disease who was misdiagnosed with
Lou Gehrig's disease (ALS), an incurable disease that is fatal within 5 years
of onset. Dr. Whitaker states that nearly every patient she has tested who is
suffering from Parkinson's disease has tested positive for Bb.
Professor Luis Romero, M.D., Ph.D., reports three patients that had been
diagnosed with Parkinson's disease years ago to be 99% reversed using
Pentacyclic Alkaloid Chemotype Uncaria tomentosa. (TOA-Free Cat’s
Claw – Prima Uã De Gato)
Editor’s Note:
This study was conducted because benefits were found using TOA-f ree Cat's
Claw alone. However, according to the authors, other supportive measures were
of benefit including; metabolic diet, pH balancing, and various forms of
detoxification.
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The History of Lyme Disease
Lyme disease was first
recognized in the United States in 1975, following a mysterious outbreak of
juvenile rheumatoid arthritis near the community of Lyme, Connecticut. The
rural location of the Lyme outbreak and the onset of illness during summer and
early fall suggested that the transmission of the disease was by an arthropod
vector. In 1982, the etiologic agent of Lyme disease was discovered by Willy
Burgdorfer. Burgdorfer isolated spirochetes belonging to the genus Borrelia
f rom the mid-guts of Ixodes ticks. He showed that these spirochetes
reacted with immune serum from patients that had been diagnosed with Lyme
disease. Consequently, the lyme spirochete resembling the syphilis spirochete
was given the name Borrelia burgdorferi (Bb).
Methods of Lyme
Disease Transmission
W.T. Harvey, M.D., M.S., M.P.H., and Patricia
Salvato, M.D., of Diversified Medical Practices in Houston, Texas, were puzzled
by the high number of patients testing positive for Lyme disease. Many of
these patients presented with "established" criteria for Lyme disease, but
others did not. The fact that southeastern Texas is a 'non-endemic' region,
and that many of the patients had no history of erythema migrans rash, led the
doctors to question established methods for Lyme disease consideration. Careful
reflection of published research lead them to conclude the following. First,
the arthropod is not the exclusive vector of Lyme disease. In addition to
ticks, Bb may be carried and transmitted by fleas, mosquitos, and mites.
Second, Lyme disease is not exclusively vector-borne. Compelling evidence
supports horizontal (sexual) and vertical (congenital) human-to-human transfer.
Other front-line physicians are arriving at the same conclusions. "Of the more
than 5,000 children I've treated, 240 have been born with the disease ,"
says Charles Ray Jones, M.D. Dr. Jones, who is the world's leading pediatric
specialist on Lyme disease, says that about 90% of his practice is comprised of
patients with the disease. He also states, "Twelve children who've been
breast-fed have subsequently developed Lyme.” University of Wisconsin
researchers state that dairy cattle and other food animals can be infected with
B. burgdorferi and hence some raw foods of animal origin might be
contaminated with the pathogen. Recent findings indicate that the pathogen may
be transmitted orally to laboratory animals, without an arthropod vector. Thus,
the possibility exists that Lyme disease can be a food infection. Citing
limitations of laboratory tests for the detection of antibodies to Bb, a
study was conducted in 1995 at the University of Vienna (Austria) for its
detection. Utilizing polymerase chain reaction testing for DNA, Bb was
found to be present in both the urine and breast milk of patients previously
diagnosed with Lyme disease. A study conducted at the Sacramento (California)
Medical Foundation Blood Center in 1989 concluded that there is evidence
that the transmission of Bb is possible by blood transfusion .
Furthermore, in 1990, a study by the Centers for Disease Control (CDC) in
Atlanta, Georgia stated that the data demonstrates that Bb can
survive the blood processing procedures normally applied to transfused blood in
the USA.
Number of Cases
Lyme disease is the fastest-growing epidemic in the world. The
Center for Disease Control (CDC) in Atlanta, Georgia, U.S.A. affirms that
"there is considerable under- reporting" of Lyme disease, maintaining that the
actual infection rate may be 1.8 million, 10 times higher than the 180,000
cases currently reported. Nick Harris, Ph.D., Director of the International
Lyme and Associated Diseases Society (ILADS), states " Lyme is grossly
under-reported. In the U.S., we probably have about 200,000 cases per
year." Dan Kinderleher, M.D., an expert on Lyme disease, stated on the Today
Show on June 10, 2002 that the number of cases may be 100 times higher (18
million in the United States alone) than reported by the CDC. Jo Anne
Whitaker, M.D., has developed a "Rapid Identification of Borrelia
burgdorferi" and has over 2900 positive specimens for Bb f rom
forty-six (46) states, including Alaska and Hawaii. In addition, Dr. Whitaker
has had positive specimens from Canada, Brazil, Denmark, Scotland, The
Netherlands, Ireland, England, France, Spain, Germany, Switzerland, and the
Canary Islands. Considering vector, congenital and sexual transfer, D r. Harvey
and Dr. Salvato estimate that 15.5% of the global population, nearly 1 billion
people, could be infected with Bb. Lee Cowden, M.D., states that
there are very few symptoms where one should not consider Lyme, especially
given that a quarter of the U.S. population may be affected. It is estimated
that Lyme disease may be a contributing factor in more than 50% of chronically
ill people.
Katrina Tang, M.D.,
H.M.D., founder and Director of Research at the Sierra Integrative Medicine
Clinic in Reno, Nevada, states that Lyme disease eludes many doctors because of
its ability to mimic many other diseases. According to an informal study
conducted by the American Lyme Disease Alliance (ALDA), most patients
diagnosed with Chronic Fatigue Syndrome (CFS) are actually suffering
from Lyme disease. In a study of 31 patients diagnosed with CFS, 28 patients,
or 90.3%, were found to be ill as a result of Lyme. Dr. Paul Fink, past
president of the American Psychiatric Association, has acknowledged that Lyme
disease can contribute to every psychiatric disorder in the Diagnostic Symptoms
Manual IV (DSM-IV). This manual is used to diagnose psychiatric conditions
such as attention deficit disorder (ADD), antisocial personality, panic
attacks, anorexia nervosa, autism and Aspergers syndrome (a form of autism), to
name a few. Lyme borreliosis causes, mimics, is manifested as, is misdiagnosed
as, or is a contributing factor to many conditions.
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Most Common Conditions Connected
to Lyme
We asked our Lyme experts
which diseases and conditions they found were most commonly connected to Lyme:
Jo Anne Whitaker, M.D.
- Acrodermatitis
chronica atrophicans (ACA)
- Alzheimer's Disease
- ALS - Lou Gehrig's
Disease (Amyotrophic lateral sclerosis)
- Bell's Palsy
- Chronic Fatigue
Syndrome
- Fibromyalgia
- Irritable Bowel
Syndrome
- Lupus
- Multiple Sclerosis
- Parkinson's Disease
- Polymyalgia rheumatica
- Reflex sympathetic
dystrophy
- Rheumatoid Arthritis
- Scleroderma
- Syphilis
In addition to her list
above, Dr. Whitaker feels that all rheumatological diseases and many connective
tissue diseases may be Lyme-related.
Svetlana Ivanova, M.D., Ph.D.
- Acrodermatitis
Chronica Atrophicans (ACA)
- Acute Transitory
Atrioventricular Block
- Allergies
- Arrhythmia
- Arthralgias
- Arthritis
- Attention Deficit
Disorder (ADD)
- Attention Deficit
Hyperactivity Disorder (ADHD)
- Autoimmune disorders
- Bell’s Palsy
- Chronic Encephalitis
and Encephalomyelitis
- Chronic Fatigue
Syndrome
- Cognitive Dysfunction
- Complex Regional Pain
Syndrome (CRPS)
- Cranial Polyneuritis
- Demyelinating
Disorders
- Depression
- Encephalopathy
- Erythema Chronicum
Migrans
- Fibromyalgia
- Meningitis
- Meningoencephalomyelitis
- Multiple Sclerosis
- Myopericarditis
- Parkinson’s
Disease
- Progressive Visual
Deterioration
- Reversible Dementia
- Sensory or Motor
Radiculoneuropathies
- Sleeping Disorders
Note: A list of over
320 conditions that may be related to Lyme were compiled by means of a
non-exhaustive search of published scientific literature by the authors of our
feature article.
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Q-RIBb©
A New Quantitative Rapid Test For Diagnosing
Lyme Disease
Jo Anne Whitaker, M.D.-- Lyme Pioneer
Jo Anne Whitaker,
M.D., a prominent international medical researcher suffering from Lyme disease,
and her associates have developed a new method to provide physicians with an
accurate quick diagnosis of this disease. Dr. Whitaker has authored over 70
scholarly publications and has accumulated numerous awards and citations
throughout her career.
Dr. Whitaker conducted
the first clinical study to identify pathogenic E. coli by using the
fluorescent antibody test (FAT ) on infant stool specimens at a children’s
hospital in Detroit in 1956. She adapted the methodology to identify beta
hemolytic strep disease, diphtheria and pertussis. Also using the FAT, she was
instrumental in developing an anti nuclear antibody test for Lupus; a method
for blood and parasitic antigens and tumor markers. Now some 40 years later,
Dr. Whitaker has found this technique to be applicable in identifying the
causative agent of Lyme disease. Dr Whitaker has had extensive fellowship
programs in pediatrics, hematology, oncology, nutrition and psychiatry ; taught
in seven diff e rent medical schools and retired as a full professor of
pediatrics; spent 9 years in Southeast Asia to start a new medical school and
nutritional laboratory in Thailand and a post-graduate training program in
Vietnam during the war. After returning from Vietnam, she served as Director of
the Florida Mental Health Center in Tampa. She is also a Master Bowen
Practitioner and teacher.
Lyme Disease
Lyme disease is called the “New Great Imitator” because, like
syphilis, it attacks multiple organ systems and mimics many diseases. Both
diseases are caused by a spirochete. Lyme diseases are caused by Borrelia
burgdorferi (Bb). Bb, previously thought to be transmitted only by
the deer tick (Ixodes dammini) is now recognized to be transmitted by
fleas, mosquitoes and mites.
If ignored, the early
symptoms may disappear but more serious problems can develop months or even
years later. The later symptoms of Lyme disease can be quite severe and
chronic. Muscle pain and arthritis, usually of the large joints, is common.
Neurological symptoms include cognitive impairment, memory loss, depression,
numbness, tingling, burning sensations in the extremities, Bell's palsy, severe
pain and fatigue. Involvement of all systems such as cardiac, ophthalmic,
respiratory and gastrointestinal problems can develop. Miscarriage, premature
births, stillbirths, birth defects and transplacental infection of the fetus
have been reported. Symptoms are often intermittent lasting from a few days to
several months and sometimes years. Chronic Lyme disease, because of its
diverse symptoms, mimics many other diseases and can be difficult to diagnose.
Treatment
Timely treatment increases chances of recovery and may lessen the
severity of any later symptoms. The most effective treatment will depend on the
stage of the disease. Treatment for later stages is more difficult and may
often require extended and repeated courses of antibiotic therapy* and a
holistic approach. The diagnostic tests now being used for Lyme disease are
neither sensitive nor specific and consequently, results are not reliable.
The serologic blood test
for Lyme is insensitive, inaccurate and misses over 40 percent of cases. It is
important to understand the nature of the Bb organism. Bb can
change its shape from a spiral to a filament, cyst, granule, hooked rod or
elbow. These variants are called L-forms, a name given by the Lister Institute
where they were first studied. These L-forms are also called cell-wall
deficient (CWD) bacteria taking the non-spiral shape when they have lost much
of the cell wall. In this form they do not produce an antibody response, as
they have no cell wall, making it impossible for the individual’s immune
system to respond. Classic L-forms are active metabolism centers for the
production of CWD pleomorphic organisms (Bb). In this form they are able
to hide within most tissues in the body, thus protecting them from any host
response adverse
to their well-being. CWD
organisms can revert to typical morphology and may revert into adult forms. For
this reason most of the diagnostic tests, i.e. ELISA and Western Blot, which
depend on the production of antibodies, are inadequate. Much like the hepatitis
model, antigen is present early after initial infection. Later, there is an
antibody response in about seventy percent of patients. Tests that look for
antibody response will not support an early diagnosis, nor reliably confirm
presence of the disease.
Fibromyalgia Patients
All Positive
I had been working with fibromyalgia patients, and after
learning about the Bowen Technique and experiencing how this simple, gentle
therapy relieved so many of my symptoms, I established the Bowen Research &
Training Institute. Bowen Therapy is a gentle non-invasive body therapy that
seems to bring the autonomic nervous system into balance. Dr. Lida Mattman, who
has been culturing cell wall deficient (CWD) organisms from blood for 40 years
was contacted to culture specimens from 25 individuals diagnosed with
Fibromyalgia Syndrome. She found every samplepositive for CWD
Bb, the causative organism of Lyme disease.
Following this finding,
103 seriously ill subjects with a variety of diagnoses were tested and found
to be positive for Bb based on Mattman’s Gold Standard Culture
method. The conditions included: Fibromyalgia, Osteoarthritis, Mixed
Connective Tissue Diseases, Polymyalgia Rheumatica, Ankylosing Spondylitis,
Lupus Erythematosus, Palindromic Rheumatism, Chronic Fatigue Syndrome, Multiple
Sclerosis, and Amyotrophic Lateral Sclerosis. I was shocked as I was one of
that group(my diagnosis at the time was Polymyalgia Rheumatica).
When did all this start?
I grew up in Polk County, Florida and spent a lot of time in the woods and had
numerous tick bites. I was never diagnosed with any particular malady in my
childhood and I never had an EM rash. As a young adult I had bouts of multiple
muscle and joint aches and pains but was able to function. I was very athletic
in my youth and even won a few amateur golf tournaments. I did have periodic
muscle and joint aches and pains throughout my life, receiving a variety of
diagnoses - Rheumatoid arthritis, Lupus, and Polymyositis Rheumatica, but
because of my strong constitution, I continued to live a productive life.
For the past six to seven
years I have had severe muscle and joint pain. I noticed changes in one of
my molars. The tooth was extracted in 2000 and its contents tested positive for
cell wall deficient (CWD) BBby the RIBb test and Mattman’s culture
test.
The usual negative
antibody tests were also all positive, including a Lyme Urine Antigen Test
(LUAT), which was exceptionally high (over 400). This confirmed I had Lyme
disease and had probably had it since I was a little girl. At that time, my
symptoms were becoming more intense. I had many neurological symptoms - brain
fog, short-term memory loss, stiff neck, night sweats, alternating feelings of
hot and cold. I had extreme hypersensitivity to light, sound and odors. I had
very little energy, was easily fatigued and often had a sore throat. It was
very difficult for me to work for more than an hour or two. I began to search
for more information and found that my case was not atypical and was most
likely chronic. I contacted several known specialists in Lyme disease and one
advised me to go on long-term doxycycline, which I did. I have been more or
less on continuous antibiotic therapy.
Developing A New Test
After finding that there were few accurate tests for Bb, my
colleague, Eleanor Fort, a medical laboratory technologist, with a long history
of research involvement in pediatric hematology/oncology and I, at Bowen
Research and Training, developed a Rapid Identification Profile (RIBb©)
for the Lyme organism. The method uses a fluorescent antibody technique on
whole blood and is noteworthy for sensitivity and for the brief time required
to complete the test (less than 60 minutes). The accuracy of this method was
tested in two other laboratories with identical results. In addition, we
look at a concentrated suspension of red and white blood cells (rather than a
routine blood smear) to identify the co-infections associated with Lyme disease
(Ehrlichia in the white blood cell and the parasite Babesia in
the red blood cell). Occasionally, we see all three infections in the same
individual – Bb, Ehrlichia, and Babesia. All of these
patients have definite abnormal peripheral red blood cell morphology. This is
noteworthy, as all require different treatment.
The RIBb test has been
further refined. We are currently doing Quantitative Rapid Identification of
Borrelia burgdorferi (Q-RIBb©). This process provides a
quantitative titration (serial dilution) method of detecting the antigen in a
fluid sample of a subject. The test is considered positive for Lyme disease
upon detection of brightly fluorescent antigen-antibody complexes.
Antibiotics do not affect the test so it is effective whether or not the
person being tested is on antibiotics. When observed in phase contrast, the
L forms can be described morphologically. A preliminary report of the findings
is provided within 24 hours of receiving the specimen and the final report
includes digital photographs of the findings. This test is useful in evaluating
treatment by comparing pre- and post-serial dilution results.
We have now tested over
3500 specimens, with 500 of these very sick children, from a wide geographical
distribution, and are positive for cell wall deficient Lyme disease. The
primary question is, “Why are there no negatives?” Does
everyone have it? (See commentary from the Editors & Dr. Mattman)
While the majority of our specimens come from individuals who have been
diagnosed clinically, we have tested individuals who we thought were
asymptomatic, but were positive for Bb. An interesting finding is
that in 1995, Mattman found 43 of 47 patients with chronic diseases to be
positive for Lyme disease, while 22 of 23 control cultures were negative.
Since 1999, all blood cultures have been positive with Bb, and there
were no negatives. We believe this indicates the magnitude of the problem.
The CDC is now reporting that Lyme disease is more widespread than earlier
thought. We believe the problem is not only endemic but may also be reaching
epidemic proportions. Early diagnosis is mandatory so that treatment can begin
immediately to provide opportunity for cure and prevent chronic Lyme disease.
Examples of
Misdiagnosis
The following stories of 4 individuals with diagnosis
of ALS illustrate how important early diagnosis is:
Case 1: The
first is an individual with a 10-year diagnosis of ALS from whom we received a
spinal fluid and blood specimen. The spinal fluid was highly positive for
Bb, as was the blood. We reported the findings within a 24-hour period
of receiving the specimens only to learn that the individual had died.
Case 2: The
second individual also had a long history of problems identified as ALS. His
RIBb test was positive and he was not able to get any physician to treat him
for Lyme disease. His health deteriorated and he was admitted to a hospital and
was on life support. When his wife was told of his impending death she obtained
a court order to have him treated with antibiotic therapy for Lyme disease. He
recovered enough to get off life support and was subsequently discharged. He
gained weight (32 pounds) and lived eight more months and then died of a heart
attack.
Case 3: The
third individual is a 25-year-old professional golfer, who became so ill he was
unable to play golf. He was diagnosed with ALS. Using our test, he tested
positive for Lyme. He was started on appropriate antibiotic therapy and was
soon able to resume his golf career. Having an early diagnosis made the
difference for this young man in living a productive, active life.
Case 4: A
young college student began having cognitive difficulties and had to dropout of
school. Using our test, he was found to be positive for Lyme. After four months
on antibiotics he was able to resume a normal active life. These examples shed
light on the importance of early diagnosis and appropriate treatment for Lyme
disease. Left untreated, the outcome of Lyme disease can result in a chronic,
debilitating condition and possible death. Are you sure you don’t have
Lyme disease? Use RIBb for life.
Jo Anne Whitaker,
M.D., is President and D i rector of Research at Bowen Research & Training
Institute, Inc., 38541 US Highway 19 North, Palm Harbor, Florida, 34684 For
Q-RIBb test info contact the Bowen Institute at: 727-937-9077; email:
JoAnne@bowen.org; or visit their website
at: www.bowen.org
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Lyme Q&A
A Panel of Experts Answer
Our Questions About Lyme
Luis Romero, M.D., Ph.D.
Svetlana
Ivanova, M.D., Ph.D.
Sue Massie, CNHP, N.D. Candidate
Rick David
Bierman, L.Ac
Q: Can you say
something more about the potential contagious aspects of the disease?
A: Massie: Lyme disease
is potentially contagious. There are numerous scientific abstracts, documented
cases, websites, etc. to prove this statement. According to Dr. Charles Ray
Jones, Pediatric Lyme specialist, "Of more than 5,000 children I've treated,
240 have been born with the disease. Twelve children who've been breast-fed
have subsequently developed Lyme. Borrelia bacteria (Bb) can be
transmitted transplacentally, even with in vitro fertilization; I've
seen 8 children infected in this way. People from Asia who come to me with the
classic Lyme rash have been infected by fleas and gnats." Dr. Gregory Bach,
D.O., presented a study on transmission via semen at the American Psychiatric
Association meeting in November 2000 in which he confirmed Bb DNA in
semen using the PCR test. Dr. Tang states "Transmission may also occur via
blood transfusion and through the bite of mosquitoes or other insects." I do
not believe we all need to panic, but we should take necessary precautions. I
have found time and time again that when one spouse is Lyme-positive, the other
spouse usually has Lyme as well.
Q: Can you run through
the advantages and disadvantages of the basic tests such as Elisa, Western
Blot, etc.?
A: Massie: The advantages
and disadvantages of the common tests are numerous. I feel the most reliable
are the Western Blot blood test; the antibody assay for BBby Igenex
Labs, the RIBb test (Rapid Identification of Bb) by Dr. Whitaker, and
Dr. Mattman's culture test using live cultures done under a fluorescent
microscope. It has to be understood though, that these are still not 100%
reliable, but are the best currently available.
Q: Can you comment on
the reported Herxheimer or toxicity effects associated with either natural or
synthetic antibiotic treatments? What are the best ways to offset this
toxicity? How should treatment proceed in relation to the quite significant
toxicity/Herxheimer reactions that occur?
A: Massie: I have
personally experienced Herxheimer reactions and toxicity accumulation with both
allopathic prescription medications, as well as natural remedies for Lyme. I am
currently experiencing Herxheimer reactions because I just started treatment
with Artemisinin for Babesia and have been symptomatic with
chills, fever, flu-like symptoms and fatigue. Herxheimer reactions can last
anywhere from a day or two to a month at a time. I have been bedridden at times
because of them. Be sure that patients drink plenty of water, rest, and build
the immune system. I recently learned about a great product called Chitosan
that can also help quite a bit with Herxheimer reactions. As far as
toxicity, I feel it is crucial for all patients to do internal cleansing, which
includes thorough colon cleansing and liver detoxification, followed by kidney
detoxificaton, etc. It is also imperative to balance patients’ pH. With
Lyme, it is believed that it is the toxicities or “die-off' that keeps
many patients sick for years. By cleansing the toxicity, patients improve
dramatically. Since each patient is different, individual assessments and
protocols are a necessity. (There are over 300 strains of Bb and the
co-infections also vary greatly.) I start every client slowly so that the
Herxheimer reactions are not too extreme.
Bierman: The severity of
Herxheimer reactions appears to be related to a number of issues including
mineral status, pH balance, toxicity of the liver and gall bladder, general
health of the patient, cranial sacral movement, heavy metal toxicity, etc.
There is anecdotal evidence to show that many patients do not have to go
through severe Herxheimer reactions in order to get well. Severe Herxheimer
reactions, in my opinion, are a result of an overload of toxins. Relief can be
achieved by pH balancing using electrolytes, green drinks, and buffered vitamin
C; opening upthe cranial flows with cranial sacral therapy, etc., increasing
the general vitality of the body, providing adequate mineral support and
various detoxification protocols. It may be a mistaken belief that the severity
of the Herxheimer reaction always means that more microbes are being killed. It
may be more of a sign that the person's body is more toxic to begin with.
Contact info: rickb@healthfreedomsolutions.com
Q: Can you tell us
more about the natural remedies that have been successful for you? And your
recommended dosages?
A: Massie: I feel
Babesia is the most difficult co-infection to cure. For years, I have
done many prescription combinations for the infection with no success. I tried
Zithromax, Mepron and Flagyl with no lasting results. Then I tried the natural
herb artemisia and that alone helped, but still did not quite eradicate
the infection. Then I tried artemisinin, and THAT did the trick! I
experienced an intensifying of symptoms right from the start, which included
night sweats, chest compression/shortness of breath, chills, and body aches
(flu-like symptoms). It has been suggested that when working with these
co-infections, a six-month minimum time period is re commended. I now recommend
artemisinin to my clients and have had tremendous feedback regarding its
effectiveness. I highly suggest this product to anyone who has been told they
were negative for Babesia , but experience symptoms which may include
night sweats, chills/fevers, shortness of breath, chest compression, heart
pain, loss of appetite, etc. Tests are unreliable and if a patient has
Babesia and does not address it, they will not show improvement - all
co-infections must be addressed. The typical dosage I recommend for
artemisinin is 1 capsule 3 times per day, 1 hour away from prescription
medications and other natural supplements. One more product I want to mention
is Chitosan which I recommend for Herxheimer reactions. Chitosan is
wonderful in assisting the body with bowel transit time because it is a dietary
fiber, and increases stool bulk and hydrates as well. (Chitosan is made from
the shells of crustaceans so caution to patients who are allergic to
shellfish.) Also, high quality essential fatty acid supplements and fat soluble
nutrients, i.e. Vitamins A, D, E and K should be taken 1 hour away from
Chitosan. In addition, I have clients drink a minimum of 8 glasses of water per
day. The typical dosage I recommend is 2 capsules taken 1/2 hour before one
meal per day to start. I usually follow this moderate dosage schedule for 2-3
days to confirm tolerance, and then increase as needed.
Q: Do you find that if
one family member has Lyme, the other family members have it as well?
A: Massie: What I have
found time and time again (myself included) is that people diagnosed with Lyme
usually find that several, if not all of their family members, are
Lyme-positive as well. There can be several reasons for this. First of all,
families are exposed because they share the same environment. For instance, a
family can have a home in Howell, NJ, which is rural and highly endemic for
Lyme. Their backyard can be all woods, with the family taking walks together.
Also, they may have a family dog/cat that frequents the woods, bringing the
ticks back to the home, lying on beds/couches, etc. The family is now highly
exposed.
When I work with a new
client, I always ask about other family members and their health. Every time I
hear how a son/daughter/husband/mother/aunt has MS, ALS, kids with ADD/ADHD,
fibromyalgia, chronic fatigue, Alzheimer’s, etc., I get suspicious. These
are often a misdiagnosis and I usually recommend that these family members all
be tested for Lyme. Lyme can also be transmitted person-to-person.
Q: What about the
neurotoxins produced by the organism? How do they affect patients? Is this
believed to be the causative factor of the psychiatric symptoms?
A: Dr. Romero: A great
deal of global research exists on microbial toxins and the evaluation of their
clinical and molecular toxicology on cells. This includes both tissue direct
effects and effects on the bloodstream (toxemia). In particular, Borrelia
burgdorferi (Lyme borreliosis) toxicant production and its direct effect on
cells, tissues and organs is a highly relevant topic in terms of both the
mechanism of action and showing targets for proposed and potential therapies.
There are reported cases
of patients with diseases today known to be Lyme borreliosis mimics, who have
received Pentacyclic Chemotype Uncaria tomentosa and have shown
remarkable clinical and physical improvement within a period of as little as 24
to 72 hours. These are individuals who have been suffering for years and have
been treated with conventional and CAM therapies. The rapid response to this
treatment may be assumed to be toxicant blockage/inhibition more than immune
system response or spirochete bactericidal effects in a very short period of
time.
Since 1819, when James
Parkinson described Parkinson’s disease (PD) by stating, “No
pathologic finding was conclusive to brain-specific lesions as the true clue
for the origin and evolution of PD”, we have more questions than answers
about the etiology of PD and other diseases such as Multiple Sclerosis,
Alzheimer's and many others. This leads to the reality of NOT having good and
effective treatments (with no side effects), and more importantly, treatments
that control, stop, or reverse these diseases.
Current molecular and
clinical toxicology have permitted the introduction of the term
“Biotoxin-induced illness,” the most important in this category being
Lyme borreliosis, which is a rapidly-spreading worldwide epidemic. From the
molecular toxicological point of view, as stated by Dr. C. Shoemaker, M.D., and
H. Kenneth Hudnell, Ph.D., “Borrelia burgdorferi produces a large
suite of biotoxins that have tissue (cells) affinity, mainly NEUROTOXINS
with high molecular tropism for lipid structures, i.e., central nervous system
(CNS), peripheral nerves, muscles, joints (synovial fluid composition and joint
cartilage), lungs, and many others. Bb’s biotoxins are more
cellular than toxemic (bloodstream)”.
If this is true, the
origin and evolution of, and complications from, chronic degenerative diseases
such as PD in young adults is much more understandable. In many cases,
autopsies performed on individuals in their early 30’s have not
demonstrated the “degenerative process” of basal brain ganglia
associated with their diagnosed brain-altering diseases.
These deaths seem to have
been caused by the introduction of biotoxins that have altered a specific site
(i.e., neurotransmitters – pre- and post-synapse membranes, altered
dopamine, serotonin, GABA, and acetylcholine molecules, thereby blocking
surface membrane receptors of different kinds, altering normal molecular action
of enzymes, coenzymes and hormones). All of these, and many more are widely
demonstrated to be the route of action of different biotoxins.
Finally, in explaining
the lack of energy and fatigue that is almost invariably present in Lyme
borreliosis and in the list of more than 300 illnesses reported to be
“related” to Bb’s biotoxins, one molecular toxicology
fact has been correlated: The calcium channels’ normal functioning may
be altered by Bb’s neurotoxicants. Therefore those neurotoxins
will act on cell membrane surfaces and receptors, within the inner cell
membrane sub-molecular components, and in the cytosol. There are published
reports attesting to the toxicant effects on cell granules - even at RNA and
DNA expression levels.
Uncaria tomentosa
Pentacyclic Oxindoles Chemotype may have three “modulating” and
direct actions on individuals suffering from Lyme borreliosis and related
illnesses: a) the proven immune system modulator effect; b) the proven broad
spectrum anti-microbial effect; and c) the modulating “blocking”
effects on the adverse bioneurotoxin molecular actions. Nonetheless, further
research is indispensable in this matter.
Q: Are you aware of
the Visual Contrast Test? Can you say something about the Visual Contrast Test
and neurotoxins?
A: Dr. Ivanova: In
patients with neuroborreliosis (chronic Lyme disease with CNS involvement), the
chronic inflammatory lesions can be located in any part of the visual pathway,
causing a deficit in retinal processing (due to damaged retinal cells and/or
conduction block of the retinal nerve fibers), in ocular nerve fiber processing
(due to chronic ocular neuritis), and in cortical visual processing (due to
impaired neuron interaction in the brain). All of these damages result in
various clinical symptoms: blurred vision, progressive visual deterioration,
changes in visual fields, increased light sensitivity, etc., and can be
assessed using the Visual Contrast Test.
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Detoxifying Lyme
By Patricia Kane, Ph.D.
In our experience,
patients with Lyme often suffer for many years without significant response to
medical intervention for their illness. The brain fog, joint pain, intense
fatigue, poor memory/concentration, and disorientation continue endlessly with
course after course of antibiotic therapy.
In our clinic we begin
with an innovative protocol to mobilize and remove Lyme along with
co-infections that complicate the patients' progress. Lyme is a fat soluble
infection that may reside in fatty tissue, the liver, the biliary tree and gall
bladder. Hidden in the fatty tissue rather than in blood,testing for Lyme
results in negative findings whether PCR, ELISA (IgG, IgM), Lyme Dot Blot, or
Reverse Western Blot is utilized. Treatment procedures must be targeted towards
removal of deeply embedded infection in the liver, biliary tree and gall
bladder.
We monitor Lyme patients
with some basic testing: Chem-28/CBC, BodyBio Red Cell Lipid Analysis, Urinary
Neurotransmitters and the Visual Contrast Test. Our regimen includes dietary
changes with emphasis on nutrient dense foods such as seeds, nuts, free range
eggs, balanced 4:1 omega 6 to omega 3 oil, organic protein foods, and green
leafy vegetables. All grain/flour, sugar, processed foods, and hydrogenated
fats are removed. Supplementation is targeted towards cleansing the liver with
the short chain fat butyrate and phosphatidylcholine. Building a strong
nutritional foundation is paramount and is accomplished by raising the mineral
base, stabilizing the electrolytes, increasing and balancing the essential
fatty acid status. We administer appropriate catalysts (vitamins, minerals) and
substrates (lipids, amino acids) indicated by the patients' test results.
We begin IV therapy on a
weekly or biweekly basis with IV Phospholipid Exchange with Essentiale N as 500
mg and follow with a Glutathione Fast Push 1800-2500 mg. Response to IV therapy
in Lyme patients usually takes approximately 7 infusions for significant
improvement in symptoms. It is essential that a nutrient dense, low
carbohydrate diet and appropriate supplementation is utilized. Two to three
times weekly patients are asked to perform an Oral Liver Flush with 2
Tablespoons of PhosChol, one capsule of Ox Bile, and several capsules of
TOAfree Cat's Claw herb. Patient outcomes have been positive in every instance
with good compliance of recommended therapy. For more information on Dr.
Kane’s protocols and seminars, please contact BodyBio at: 888-320-8338 or
856-825-8338.
LYME DISEASE: SPECTRUM
OF SIGNS & SYMPTOMS
Patricia Kane, Ph.D.
- Intense fatigue
- Diminished or absent
reflexes
- Brain fog
- Insomnia or excessive
sleep
- Memory loss (short
& long term)
- Joint
pain/swelling/stiffness
- Poor
coordination/ataxia
- Difficulty reading
- Slow or slurred speech
- Unexplained chills
& fevers
- Rash
- Sudden abrupt mood
swings
- Continual infections
- Poor concentration
- Decreased ability to
spell correctly
- Unusual depression
- Tremors
- Disorientation
- Burning/stabbing pain
- Facial paralysis
(Bell's Palsy)
- GI distress/abdominal
pain
- Poor word
retrieval/Aphasia
- Shortness of breath
- Anxiety
- Heart
palpitations/chest pain
- Weight changes (loss
or gain)
- Difficulty swallowing
- Sore throat
- Swollen glands
- Nausea/vomiting
- Anorexia
- Cough
- Vasculitis
- Muscle pain or cramps
- Loss of muscle tone
- Changes in taste or
smell
- Twitching of muscles
(face or other)
- Obsessive-Compulsive
symptoms
- Panic attacks
- Changes in cerebral
blood flow/brain waves
- Peripheral
neuropathy/tingling/numbness
- Number reversal
- Lightheadedness
- Headaches/Migraines
- Light Sensitivity
- Menstrual
irregularities
- Change in
hearing/buzzing/tinnitus
- Trigeminal neuralgia
(TMJ)
- Unexplained hair loss
- Dilated cardiomyopathy
- Visual disturbance
- Loss of temperature
control
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Why Are All Q-RIBb Test Results
Positive?
Commentary from the Editors & Lida Mattman, Ph.D.
Editors: All
samples tested positive for Lyme by the fluorescent antibody test (Q-RIBb).
This finding initially prompted our concern over the integrity of the assay.
However, if the assay is not producing false positives, as shown by the
development data and analysis by two other independent laboratories, then the
spirochete antigen is present throughout the population of sick individuals, as
indicated by Dr. Whitaker’s findings. We believe the Q-RIBb
(Quantitative-Rapid Identification of Borrelia burgdorferi) can be
valuable for identifying the magnitude of infection and for tracking the
progress of treatment.
Why should you believe
this data? Dr. Whitaker has a strong background in developing fluorescent
assays. The assay was evaluated by two independent laboratories and determined
to be accurate.
Equally important, we
spoke with Dr. Lida Mattman, Ph.D., previous laboratory director of Nelson
Medical Research Institute in Warren, Michigan. Dr. Mattman has clarified the
situation. Mattman, a Yale graduate and previous Director of Research of the
laboratories of the UN, was culturing the organism in live culture, considered
to be the GOLD STANDARD of Lyme identification. “During the last six
months we were in operation, out of 400 patients, there were only two negative
findings. One of the negative cases was a man from Germany and the other was a
dog” - Dr. Mattman.
Dr. Mattman believes that
spirochetes can become endemic in the population. In the early 1980’s,
Yaws, a tropical spirochete disease causing elephantiasis-like symptoms was
endemic in Haiti. The public heath department gave everyone penicillin. In
France, 1 out of every 7 people tested positive for syphilis, but tests were
poor and it could have been much higher. Secondary syphilis may be found in the
mouth and skin so it can be communicable by touch alone.
Dr. Mattman believes that
touching can spread Lyme disease. The Lyme spirochete can actually occur in
tears, and therefore can be transmitted to hands, which contaminates doorknobs,
pens, people shaking hands, etc. This appears to be consistent with the
observation that whole families often culture positive for Lyme and present
with symptoms.
Because of the contagious
aspect, just about everyone who is sick, and many who are well, have a high
probability of having Lyme spirochetes. Differences in susceptibility to
illness may lie in areas of immunity, detoxification capabilities, stress, or
many other factors that affect the expression of illness. For those who are
sick and not responding to therapy, it would be wise to look for the presence
and magnitude of Lyme and coinfections.
Warren Levin, M.D.,
Wilton, Connecticut
"Our little local newspaper published that 49% of
the families from Richfield and 56% of the families from Wilton, Connecticut
have at least one family member with Lyme disease. And that's just what they
know about using conventional testing. I live and practice in the epicenter of
this epidemic.” |
