Marjorie Tietjen
Director For Lyme Disease Concerns
Common Cause Medical Research Foundation
[email protected]

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doctors at Yale contend that after the 30 day treatment period, if one still has the exact same symptoms, it is no longer active chronic lyme but is now suddenly an autoimmune disorder.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

Good, detailed letter w/info galore.

Can I plagerise from this post?

Any reference on where you got the mice baby info?

THIS IS A GREAT ARTICLE!

Please know that I say this with all sincerity:

KICK A** ARTICLE!!!!!

I do hope you are using it as a press release for your upcoming meeting?

I do hope you are sending it out to every major/minor news media you can find on the net?

I think the title is what first gets one's attention - most people (especially media types) LOVE love love to bash governmental bureaucratic entities.

This article is too good just for us - please let it circulate.

I thank God for your intelligence & your willingness to share it!

Blessings,

When you first mentioned writing it, you said you thought it might sound conspiratorial. IMO, you have proved your case.

Have you thought of submitting this to Red Flags?

Is this available for me to use parts of this, or some of it, or all of it, for info for doctors or people who need this?

Please indicate if this is possible. If so, write up a short blurb and your name so people who use this can credit you.

Once you post it with your name on it, it is ethical that others should only use this with your name and byline on it. Or if only parts are used, they should reference it.

Since the internet, info gets lost. I know, many articles I wrote (not on lyme) I see again and again under someone else's name.

This is good stuff. Where are you in Connecticut??

Marjorie Tietjen writes for The Journal Of Degenerative Disease, a nonprofit quarterly magazine of The Common Cause Medical Research Foundation. Her primary focus is on investigation into why there are so many emerging diseases, why the symptoms of these diseases overlap to such a degree, why there are no cures, only treatments and what role Governments and corporations play in all this. All of her major essays can be viewed at http://www.congregator.net/medicalnews/tietjen/index.html. She may be contacted via E-mail at [email protected] She encourages reproduction of this material provided it remains intact, including this statement.

Any suggestions are appreciated and I don't see why parts of this article cannot be quoted.

Yes Nan...I did submit it to Red Flags and they said they would talk it over on Friday and see if they would use it as an article. It may not have enough of a professional quality for them tho. We shall see. Maybe you could give it a plug. :=) They also want me to write a synopsis of the conference after it is held.

And yes Island girl...I live in CT...near New Haven. Can I tell you guys something weird that happened to me? I don't want to offend any Bush fans...so let me know

I am impressed that we have such a wonderful author on Lymenet!

The Bransfield's website link did not work when I tried it. I think it is the '.' in the link.

Anyone that thinks this country is being run by our elected officials is sadly misinformed. There is definitly a force behind our elected representatives that hides in the shadows. To some extent they are being exposed by the advent of the internet, but they are also using the interent to continue to hide their objectives.

Anyone with a brain can see what the CDC is doing. They are a puppet of the shadows. It can't be more obvious. The are inconsistent in their presentation of information, they muddy the water with outdated or inaccurate facts and they purposly advertise in such a way to confues the general public.

By creating diversions like the flu vaccine fiasco of last year, they are able to hide the real serious issues. Lets face it we are caught up in a conspiracy of epic perportions.

I agree, I really have no fear, aggrevations yes, but I have placed all of this in God's hands. I believe that suffering is key to creating a closer bond with God. I dont mind the suffering it gets harder for me to watch my kids suffer.

I believe God has a plan and if we are faithful and accept him, our reward is coming. It is not easy to put everything into his hands, but then again we are not perfect and are not expected to be perfect.

It was interesting, when I was critically ill and in my coma, the only thing I saw was my interpratation of Jesus' face. I dont know if this was just a sub conscience thought or something more. But for what ever reason. I know deep inside my heart that this is all about Him.

I was big into the political process, now I could really care a less. My purpose now is to spread the word and support and fight for our rights to worship him as we see fit, outside of that I could care a less what our government does.

I had problems with the CDC link. This is the one that works now:
http://www.cdc.gov/ncidod/dvbid/lyme/

Changing the link address is probably just one more way to confound our battle.

I can't believe that I've been bypassing posts about the CDC thinking that it's all rhetoric and they're really on our side. When they stated that Lyme is a clinical diagnosis, I let my guard down. How depressing.

Thanks for all your effort.

Here's some more food for thought...

Why is it that the CDC, and therefore the mainstream doctors, don't have a problem clinically diagnosing MS, Parkinsons, ALS, etc which don't even have a known causative agent?

And why is it that the CDC, and therefore the mainstream doctors, don't have a problem prescribing medication for the rest of these patients lives?

In contrast, the clinical Lyme diagnoses is very strict and medication limited to 30 days and persistent infection doesn't exist.

What???

Why is it that the most specific bands in the WB are still being ignored by the CDC when all the doctor has to do is to ask the patient if he ever received the Lyme vaccine to determine if, say, a positive in band 31 and 34 is due to vaccine of Bb infection?

Nothing of this makes any sense.

And since the people at CDC are not stupid, this means there's another reason behind all this which is not medical at all.

It stinks of politics, don't ya think?

I've said this before, but our current mainstream medical profession is up in the drug companies a$$.

The mainstream medical profession has become a business where the focus is 99% on treating symptoms and improving drugs to be more efficient in masking the symptoms.

Suppose we started to treat the causes of diseases. I mean who'd be interested in that....except the patients. The drug companies would be toast. Literally.

It's the cigarette story all over again.

The drug companies are running the show guys and gals!!!!!!!

Personally, I don't know what to do about this. I mean, we need like president Bush to come down with chronic Lyme disease. Then there might be some movement.

Sorry I have nothing constructive to say at this point. I don't know how to help us? This think WILL turn around to our favor, everntually, but it'll happen really really slowly...IMHO.

Great work, Marjorie.