- This is part 1 of the Connecticut Lyme Disease Conference
Summary. Are any of you having problems getting diagnosed...you know something
is seriously wrong with you or a loved one but no doctor can pinpoint it?
Maybe you have been diagnosed but with something obscure such as Chronic
Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Alzheimer's, Mental
Illness, ADD, ALS or Lupus. If so...you may want to bring this summary
to your doctor. Part 2 will be forthcoming. We need to spread the word
as to the interconnectedness of our many so called "autoimmune diseases"
-
- Sponsored by The Greater Hartford Lyme Disease Support
and Action Group, the main theme was misdiagnosis and the interconnectedness
of our many chronic autoimmune illnesses.
-
- http://www.redflagsdaily.com/articles/2005_may15.html
-
-
- Red Flags - Online Conference Center
May 15, 2005
-
- Report From the 30th Anniversary of Lyme Disease
-
'With No Compassion Observed!'
May 7, 2005 - PART ONE
-
- Summary by Marjorie Tietjen
Common Cause Medical Research Foundation
daystar1952@yahoo.com
-
- More than 250 people from all over the United States
and Canada gathered together in Farmington Connecticut on May 7, 2005,
to learn about Lyme Disease and its co-infections. Sponsored by The Greater
Hartford Lyme Disease Support and Action Group, the main theme was misdiagnosis
and the interconnectedness of our many chronic autoimmune illnesses.
-
- The key organizers of this special event, Randy and Laura
Sykes and Chris Montes, worked together with other members of the group
to bring together a wonderful collection of the most respected doctors
and researchers, specializing in the diagnosis and treatment of Lyme Disease,
mycoplasma and other co-infections. The overall atmosphere of this meeting
was electrifying. There was such a sense of unity and purpose .The first
speaker, Dr. Whitaker, specifically mentioned the special collective aura
which exuded from those in attendance.
-
- Dr. JoAnne Whitaker, the President and Director of Research
of the Bowen Research and Training Institute, opened the meeting with her
presentation focusing on ALS and it's possible connection to Lyme Disease.
Dr. Whitaker has developed a critically important test for Lyme Disease
called the Bowen QRIBb Test . It uses the fluorescent staining technique
to identify the actual L or cyst form of the Lyme disease microbe....Borrelia
burgdorferi (Bb). This patented test identifies the antigen of the bacteria
and not the body's antibodies. One receives a microphotograph of the actual
microbe identified in their body.
-
- Dr. Whitaker stated that they rarely find Bb in the blood
in the spiral corkscrew form but almost always it is in its L form. Because
this microbe can change it's form or shape, it is very adept at avoiding
detection by the body's immune system and antibody testing. This could
be one of the reasons why the diagnosing and treatment of Lyme Disease
is so controversial.
-
- Dr. Whitaker postulates that ALS could be the end stage
of Lyme disease. She talked about the many ALS signs and symptoms which
exactly mirror the symptoms of Lyme Disease....and of course the most important
fact is that her test has found that most if not all ALS patient bloods
which were sent to her were positive for Lyme.
-
- The Bowen Lab receives blood samples from all over the
world. The patients who send their blood to Bowen have previously been
diagnosed with conditions such as ALS, Alzheimer's, Lupus, Chronic Fatigue
Syndrome, Fibromyalgia, Bell's Palsy and more. Almost all of these patients
test positive for Lyme using the Bowen Test. Some doctors and researchers
feel that this means the test is inaccurate....too many positives. But
others are beginning to realize that these findings are most likely representing
the true proportions of this epidemic we are faced with. That it is not
SARS, West Nile Virus and Anthrax we need to be worrying about, but rather
the microbes such as mycoplasma, bartonella, babesia and borrelia burgdorferi
that are already in our midst, spreading slowly but steadily throughout
the population and causing untold suffering, disability and death.
-
- Our next illustrious speaker was Dr. Lida Mattman. She
graduated from Yale, with distinction, receiving a PHD in immunology. She
has published 75 journal articles and a book entitled "Cell Wall Deficient
Forms - Stealth Pathogens". She was also nominated for the Nobel Prize
in medicine.
-
- One of the most important points she presented was the
fact that spirochetes are among the best at disguising themselves. In order
to reliably detect the presence of this organism, one must look for the
pleomorphic forms and not the classic form. This is also true for other
types of bacteria. Spirochetal diseases, in general, tend to become very
widespread and then endemic, which she believes has happened with Lyme
Disease.
-
- Dr. Mattman also showed evidence that spirochetes of
several different types, including the Bb strain, are involved in Multiple
Sclerosis. Spirochetes, which were found in autopsied brains of M.S. patients
looked more like borrelia in morphology. Spirochetes were also found in
the spinal fluid of M.S. patients. Dr. Mattman also mentioned a relationship
between Lyme, ALS and Parkinson's. Those Parkinson's patients who were
treated for Lyme all improved.
-
- (Writer's Note: After listening to Dr. Mattman's presentation,
I concluded that we need to look for the L or cyst form of these microbes
when testing those with chronic illness. In order to do this, direct detection
methods must be used.)
-
- Dr. Bernard Raxlen, a neuropsychiatrist, spoke about
the many patients who are being misdiagnosed with somatiform conditions
(all in the head), who, when tested for Lyme Disease, all tested positive.
Doctors are being presented with many medically unexplained symptoms and
when they find no organic causes, they label the patient's problem as psychosomatic.
To borrow a quote from the conference program, "Dr. Raxlen is the
only psychiatrist in the tri-state area (N.Y., N.J, CT) to initiate a total
comprehensive treatment program utilizing both oral and IV antibiotic treatment
intervention in conjunction with neuropharmacology and stress management
for depression, panic disorder, bipolar mood disorder and prefrontal lobe
deficit syndrome. He has uniquely integrated these treatments with supportive
modalities from his work in psychoneuroimmunology and nutritional medicine."
-
- Connecticut State Attorney General Blumenthal gave a
short speech commending the activists in the Lyme community for working
so hard to get the information about Lyme Disease to the public. He also
gave an award to Polly Murray for being the pioneer of Lyme Disease. She
was a housewife and mother who, along with her children and neighbors,
experienced the devastation of Lyme Disease before anyone knew what it
was. She wrote the book, "The Widening Circle", which told of
her struggle.
-
- A second award went to Dr. Jones, one of the only pediatricians
in the state of Connecticut who openly treats chronic active Lyme Disease
in children. (Dr. Jones could not be there in person to accept his award
because, though it was Saturday, he still had children to treat.)
-
- Our next speaker was Dr. Richard Horowitz, a physician
with twenty years of experience in treating complicated cases of Lyme Disease.
He practices in Hyde Park, N.Y and has treated over 8,000 cases of chronic
tertiary stage Lyme disease.
-
- He spoke about the many factors which contribute to the
whole chronic Lyme Disease scenario: environmental toxins, neurotoxins,
poor diet and co-infections which all pile on top of each other to form
the total chronic Lyme picture. He told us of the over 100 strains of Bb
in the United States and the over 300 strains worldwide. Only several of
these strains are currently being tested for, and this is one of the obvious
explanations for the lack of proper treatment, or any treatment at all.
It is becoming more and more apparent that many of these chronic or so
called autoimmune diseases do have an infectious cause ...or several infectious
causes.
-
- Disseminated Lyme Disease can affect all of the following
systems in the body: the dermatologic, neurologic, cardiovascular, opthalmologic
and musculoskeletal systems. Dr. Horowitz spoke extensively about co-infections
and how they play a major role in the patient's lack of ability to get
well. It was mentioned that the Lyme/Babesia combination was the most serious
and difficult to eradicate. As with borrelia, there are also many different
strains of Babesia not currently being tested for. Dr. Horowitz said that
although everyone is different, it usually takes at least a year of treatment
or more in typical cases of chronic Lyme. The general rule of thumb is
to treat the patient for two additional months after all symptoms have
resolved.
-
- The reason given for extended treatment is that Bb is
a very slow replicator and can hide out intra-cellularly. The Bb organism
can only be killed when replicating. It was also brought up that different
strains require different types of antibiotics. Thus, in many cases treatment
consists of experimenting, and trial and error. Spinal taps are often negative
for Lyme disease because of circulating immune complexes in the spinal
fluid, which means that a negative test on spinal fluid cannot rule out
Lyme disease as the patient's problem.
-
- The Lyme microbe can change its structure and can also
cloak itself to hide from the immune system. Dr. Horowitz made it clear
that very few "chronic" Lyme patients test positive on the Western
Blot and in fact the actual percentage who test positive may only be 1%.
-
- (Writer's Note: I have heard from certain researchers
that most of those with chronic Lyme do not produce antibodies to the germ.
In other words, those who are the sickest with Lyme disease do not test
positive and therefore do not get treatment. This makes such a definite
statement that diagnosis needs to be clinical, based on symptoms, patient's
history, and the doctor's ability to discern the general symptom complex.
The only way a doctor can acquire this discernment is through experience.
This is why the world of science should be learning from our Lyme-literate
doctors, and not attacking them.
|
