- It certainly appears that The Centers For Disease Control
(CDC) is encouraging the spread of Lyme Disease (borrelia burgdorferi)
and other chronic illnesses, which may be caused by various strains of
spirochetes currently not being tested for.
- To begin with the CDC states that Lyme Disease is a clinical
diagnosis. This means that when determining whether a patient may or may
not have lyme disease, the physician must consider the extensive array
of symptoms which present in lyme disease and the history of the patient..
Medical tests should only be used as an adjunct or aid in this determination.
- The CDC uses specific criteria for interpreting the Western
Blot in regards to Lyme Disease. The CDC states somewhere in their fine
print that their very restrictive criteria is only to be used for surveillance
purposes and not for patient diagnosis. However , this crucial fact is
not made clear to the health departments, laboratories or doctors. As a
result thousands...perhaps even millions of people with chronic illness
are being misdiagnosed and left untreated.
- In February of 2004 Connecticut held a hearing which
addressed this issue. Attorney General Blumenthal requested that Yale,
the National Institute of Health (NIH) and the CDC attend the Hearing.
All three institutions declined the invitation. We then sought the aid
of our congressmen who did end up convincing the CDC to attend. One of
the main forces behind the non treatment of Lyme is Yale's stance that
3 to 4 weeks of antibiotic treatment is almost always sufficient to produce
a cure. Certain doctors at Yale contend that after the 30 day treatment
period, if one still has the exact same symptoms, it is no longer active
chronic lyme but is now suddenly an autoimmune disorder.
- They have no proof to back this up and this was made
evident when they did testify at our first Lyme hearing several years back.
Perhaps this is why they were reluctant to attend our most recent Hearing.
Many patients who go to Yale for help with suspected lyme are being diagnosed
with Multiple Sclerosis, Fibromyalgia, Chronic Fatigue syndrome, ALS and
even Lupus. Yale evidently feels there is no such thing as chronic active
- The main focus of the Hearing last year was to educate
the medical community as to the extensive problem of lyme being misdiagnosed
as many other diseases and conditions. One of the prime reasons for this
medical disaster is that doctors are placing too much reliance on the two
reccomended lyme tests, the Elisa and the Western Blot. At our Hearing
Attorney General Blumenthal strongly advised the CDC to alert the health
departments, laboratories and doctors not to use the over restrictive criteria,
involving the Western Blot, for diagnosing Lyme Disease. Again.....this
is one of the main factors as to why so many people are not being properly
diagnosed and as a result are becoming disabled and some are even dying.
You may not hear of people dying from lyme disease. Usually you will be
told that death was from a heart attack or some other end result of the
Lyme Disease process. Scientists are just beginning to realize the extensive
nature of this disease and it's coinfections.
- It has been a year now since the Hearing and we've been
waiting for the CDC to correct this unnecessary situation. Instead of backing
up their original statement not to use CDC criteria for diagnostic purposes,
they have diverted the public's attention from that issue by coming up
with a different angle.
- I was directed to the CDC website
On April 3, 2005 there were two new highlights posted. One was entitled
"Caution Regarding Testing for Lyme Disease" and the second one
was "Information About Lyme Disease on the Internet". The impression
left by these articles is that only government websites or those websites
who are partially sponsored or affiliated with certain government agencies,
have the correct information concerning Lyme Disease. As far as testing
goes, it appears that the tests which are finding an extensive amount of
lyme in the population ,are the very ones the CDC is claiming are inaccurate.
- The particular tests which the CDC is discouraging the
use of are the urine antigen test, the polymerase chain reaction tests
and the immune fluorescent staining for cell wall deficient forms of Borrelia
burgdorfei (lyme). On the whole patients have had very positive results
using tests of this sort as a basis, along with clinical judgement, for
antibiotic treatment. There have been many very ill patients who have tested
negative on CDC approved tests, went on to be further tested by these other
methods, were found to be positive, and then improved on antibiotics. It
is ironic that the CDC is throwing a negative light on the very tests which
appear to be saving people's lives.
- Antibody tests have limited usefulness, especially in
chronic Lyme Disease. The following is a very important list from Dr.Robert
Bransfield's website http://www.mentalhealthandillness.com
- It shows the many reasons why a patient can test negative
on these CDC approved tests and still have Lyme Disease. It would be an
excellent list to take with you when visiting your doctor. After looking
over this list one can see why depending on antibody testing for a diagnosis
can be very risky business. Why then would the CDC encourage us to depend
on the antibody tests to diagnose Lyme Disease? Why are they discouraging
the use of the very tests that have already helped countless patients access
treatment and as a result gain concrete improvement?
- The specific tests and the order of testing, which the
CDC suggests, results in vast underdiagnosis. Is this the goal? Could it
be possible that the CDC is intricately meshed with the pharmaceutical
companies? Is a treatable epidemic being covered up for the purpose of
financial gain? When a patient is handed a negative diagnosis for Lyme
Disease they proceed to visit specialist after specialist seeking a diagnosis.
This results in multiple isolated diagnoses, such as irritable bowel syndrome,
carpal tunnel, migraine headaches, fatigue, depression, ADD, eye problems,
heart problems, foot and leg pain, etc. Lyme Disease can present with 40
or more symptoms throughout the body.
- It becomes obvious that marketing many symptomatic treatments
is much more profitable than promoting one which cures. What are the real
causes of our ever expanding list of chronic illnesses and conditions which
have no definitive tests, causes or cures? Microbes and chemicals in our
food and environment obviously are playing a much larger role than is being
admitted by the government agencies who are supposedly responsible for
- I would like to speak a bit more concerning the article
on the CDC's website "Inaccurate Information About Lyme Disease on
the Internet" by James D. Cooper M.D. and Henry Feder Jr. M.D. The
basis of the article is to shed suspicion and doubt concerning any lyme
disease information we find on the internet that isn't sponsored or approved
by the government. According to this article only government research or
approved research is valid. Evidently the government and or mainstream
medicine discounts any empirical evidence gained through hands on experience
in treating chronic active lyme.
- The Infectious Diseases Society of America and the CDC
have no treatment protocols for chronic lyme because they state there is
no such thing as persistent infection. I challenge them to provide proof
to back up this statement. In fact, The Greater Hartford Lyme Disease Action
and Support Group is posting a 10, 000 dollar reward to any doctor or researcher
who can prove beyond a doubt that lyme disease cannot be a persistent infection...that
it is absolutely cured and totally erradicated from the body with 6 weeks
of antibiotic treatment. There are many articles, studies and personal
experiences which prove that lyme can be a persitent infection despite
long term antibiotic treatment. To check out some of the articles and studies
which back up the chronic persistent infection stance...please visit
- There are a couple of other points I would like to address.
The CDC recpmmends one dose of 200mg of doxycycline as prophylaxis (preventative
measure) when bitten by a tick. In their view this is supposed to be sufficient.
I am a personal witness to the fact that this is not always sufficient.
I have a friend who was bitten by a tick. The tick was removed and 100mg
of doxycycline was taken immediately, twice a day for 30 days. The day
after the medication was stopped, this person presented with multiple lyme
rashes all over their body, suggesting a systemic infection. When tested
this person was CDC postive. So, not only is one dose not always enough,
but in this case 30 days was not enough!
- The article by Cooper and Feder also states that "Lyme
Disease has never been passed in breast milk to an infant." (American
Academy of Pediatrics). How can a sweeping statement like this be credibly
made? To begin with there are studies out there that have shown Bb to be
present in breast milk...... and a study from
Diagnostic Microbiology and Infectious Disease vol 21, Issue 3 March
1995, page 121-128 entitled "Detection of Borrelia burgdorferi DNA
by polymerase chain reaction in the urine and breast milk of patients with
Lyme". The CDC may then tell us that this does not prove that it can
be passed on to the infant. This may be true but testing is so inaccurate
that this statement cannot be proven. It would also be helpful when evaluating
this statement, to know what percentage of the nursing population, and
their infants, have been tested for lyme. Studies with animals have shown
that the organism has been transmitted to infant mice through breast milk.
- Independant researchers and lyme literate doctors who
are presented day after day with cause and effect evidence involving thousands
of patients have no doubts in their minds that Lyme Disease and some of
it's coinfections can be chronic. Why is this empirical evidence being
discounted and covered up? Why are doctors being persecuted for curing
and or improving their patients with long term antibiotics?
- On May 7, in Connecticut, the Greater Hartford Lyme Disease
Support and Action Group is holding a conference you do not want to miss.
If you have any loved ones or know any friends with disease conditions
such as ALS, M.S, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, ADD, OCD,
Autism, Bi Polar Depression, Alzheimer's , etc , please encourage them
to come to this conference. The misdiagnoses concerning these diseases
are staggering. This conference is featuring highly respected researchers
from across the country who will be addressing these issues. and how that
many times Lyme disease plays a role in these diseases. For more information
you can e-mail me at firstname.lastname@example.org
- Let's all come together and make a difference. Much of
the chronic illness in our country is tragic and unnecessary. We need to
take back responsibility for our own healthcare.