Date:   4/28/2005 12:50:41 PM ( 19 y ago)
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CDC Promotes Spread Of Lyme Disease

Marjorie Tietjen
Director For Lyme Disease Concerns
Common Cause Medical Research Foundation
Daystar1952@yahoo.com

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Certain doctors at Yale contend that after the 30 day treatment period, if one still has the exact same symptoms, it is no longer active chronic lyme but is now suddenly an autoimmune disorder.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 Lyme Disease.

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 http://www.cdc.gov/ncidod/dvbid/lyme/index.htm. 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/seronegativelymedisease.html. 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 our health.

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 http://www.lymeinfo.net/medical/LDPersist.pdf

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......http://www.anapsid.org/lyme/bach.html 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 daystar1952@yahoo.com 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
 

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