A web site is currently under development for the "Stand Up for Lyme" campaign.
At this point, we are working to select scientifically-documented content which will clearly and decisively demonstrate the prevalence and severity of TBD's in both Texas and the US, the diagnostic and treatment controversy, and the impact on patients.
(While the campaign is currently focused on Texas due to our recent losses of Lyme-literate medical professionals, we hope that it will benefit similar efforts in other states.)
We would very much appreciate your suggestions. You can either post them here, or email them to [email protected] with a copy to [email protected].
[ 06. March 2006, 06:49 PM: Message edited by: tickedntx ]
Posted by lou (Member # 81) on :
Guess you know about the lymeinfo.net site? They really have a bunch of excellent information. Also, the basic section at ILADS website would be good.
Yes, thank you, these are great resources and I will definitely use them.
What I am looking for here are suggestions from Lymenet members for publications that _you_ (Lymenet members) find especially compelling in making the case for the existence of chronic Lyme, the reasons for the controversy, and the impact of that controversy on sick people struggling to recover.
Thanks in advance for your ideas, Suzanne
Posted by lou (Member # 81) on :
I see. Well, good luck. Knock em dead!
Guess yours will be a successor to the previous website, which now is only available in archived form apparently:
Suzanne, I found LDA's 2 recent books very helpful to me:
LD: Science, Policy, & Law
LD, can we have fun? for children
I'm guessing on names of books; I'm working in the dark after 1 am while hubby sleeps nearby.
Posted by tickedntx (Member # 5660) on :
To make sure that I do not lose track of anything, I am copying some info posted in the general discussion thread
==========================
I'm sure that I'm stateing the obvious but money and political power are seemingly part of the problem.
Even though this was presented over a decade ago, I've no doubt it still applies.
The Lyme Disease Conspiracy by Joseph J. Burrascano, Jr., M.D. Reprinted from Senate Committee Hearing on Lyme Disease August 5, 1993 http://www.jersey.net/~joebur/conspire.htm
Lyme Disease: Two Standards of Care By Lorraine Johnson, JD, MBA Executive Director, CALDA (California Lyme Disease Association) Updated February, 2005
My husband and I think that the CDC is in the pocket of the insurance industry.
Terry
------------------------------------------------
tickedntx, You are welcome. I have not seen the original transcript of the congressional hearing on the first link. I assume it is valid but can't guarantee that so if you were to cite it you would probably want to get the original transcript.
I have seen mention that Dr. Burrascano was investigated within 2 months of his speech due to an annonymous complaint filed against him but again, that would all have to be verified to be accurate before you could rely on it.
I don't know how valid this recounting of some of history is but it is a long article and very interesting. It points out some of the political and conflict of interests that were in play when policies were formed about lyme treatment by the CDC and IDSA. GAO Investigation - partial history of the politics of lyme
Of particular interest (but there are many other things in the article that are equally interesting)
"Yet another plausible reason looms. A search of the World Intellectual Property Organization Patent Publication reveals that on 5/26/92, under patent publication #WO9324145, a subsidary of the SmithKline Beecham pharmaceutical company, in conjunction with the CDC, filed a patent on behalf of several CDC employees from the agency's Fort Collins branch who are named as inventors. (These Fort Collins personnel are directly involved in all CDC decisions regarding LD.)"
"This personal patent is for a specific strain of the LD spirochete and covers the development of an ELISA-based test, a potential vaccine, and more. (The updated patent mentions their "invention" could be used as a candidate to potentially add to the OspA vaccine then under consideration.) CDC employees named in the patent, therefore, may have a vested interest in keeping ELISA-based tests as the standard testing procedure. Schell, whose test is not ELISA-based, said at least one Fort Collins patent-holder, CDC research biologist Barbara J. Johnson, was at the meeting as a member of the evaluation committee."
I've puzzled over the politics of lyme disease and if some of the history in this article is correct, then it explains some of it.
Another consideration is that there are many illnesses that are diagnosed and have no real treatment and the cause is unknown but the symptoms are identical to chronic lyme.
Since tests are so unreliable, the only way to tell if someone would be helped is to use an antibiotic/treatment probe.
Can you imagine the cost to insurance companies if everyone with fibromyalia, ALS, Chronic Fatigue Syndrome, MS etc. did a long term treatment? They have every reason ($$$) to discredit information on chronic lyme disease.
We really need to get some of the pharmaceutical companies (who stand to gain financially) to lobby for us. LOL
Terry -------------------------------------------------
I saw this post elsewhere and thought it might be of benefit to you Suzanne.
"POSTED 07-03-2006 01:05 AM by IAMANURSE
Provisional cases of selected notifiable diseases, United States, week ending December 31, 2005 (Source CDC MMWR Report)
Suzanne, I read/edited by shortening paragraphs & double-spacing Barrascano's 93 hearing of THE LYME CONSPIRACY. Do you want a copy of it here?
My pc isn't let me work last 2 days on internet & my word processor plus my printer, so I can't copy/paste it here right now. Just let me know by PM ok. I don't come read this one daily.
Bettyg
Posted by bettyg (Member # 6147) on :
The Lyme Disease Conspiracy by Joseph J. Burrascano, Jr., M.D. Reprinted from Senate Committee Hearing on Lyme Disease August 5, 1993
There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately many of them act unscientifically and unethically.
* They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. * They exert strong ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. * They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions. * They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest. This group promotes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics.
The truth is that Lyme is the fastest growing infectious illness in this country after AIDS, with a cost to society measured in the billions of dollars.
It can be acquired by anyone who goes outdoors, very often goes undiagnosed for months, years, or forever in some patients, and can render a patient chronically ill and even totally disabled despite what this core group refers to as "adequate" therapy. There have been deaths from Lyme disease.
They feel that when the patient fails to respond to their treatment regimens it is because the patient developed what they named "the post Lyme syndrome". They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system.
The fact is, this cannot be related to any consistent abnormality other than persistent infection. As further proof, vaccinated animals whose immune system has been activated by Lyme have never developed this syndrome.
On the other hand, there is proof that persistent infection can exist in these patients because the one month treatment did not eradicate the infection.
Indeed, many chronically ill patients, whom these physicians dismissed, have gone on to respond positively and even recover, when additional antibiotics are given.
It is interesting that these individuals who promote this so called "post-Lyme syndrome" as a form of arthritis, depend on funding from arthritis groups and agencies to earn their livelihood.
Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff, even if the patient will suffer.
This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
Following the lead of this group of physicians, a few state health departments have even begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diagnosis and treatment than they do.
Indeed, I must confess that I feel that I am taking a large personal risk here today by publicly stating these views, for fear that I may suffer some negative repercussions, despite the fact that many hundreds of physicians and many thousands of patients all over the world agree with what I am saying here.
Because of this bias by this inner circle, Lyme disease is both underdiagnosed and undertreated, to the great detriment to many of our citizens. Let me address these points in more detail.
UNDERDIAGNOSIS 1. Under reporting: The current reporting criteria for Lyme are inadequate and miss an estimated 30 to 50% of patients.
Some states curtailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40%, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline.
The reporting procedure is often so cumbersome, many physicians never bother to report cases. Some physicians have found themselves the target of state health department investigators. Finally, to many physicians and government agents rely on the notoriously unreliable serologic blood test to confirm the diagnosis.
2. Poor Lyme disease diagnostic testing: It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases, yet many physicians, including many of those referred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diagnosed clinically, and can exist even when the blood test is negative.
The Rocky Mountain Lab of the NIH, which is the country's best government laboratory for Lyme research had developed an excellent diagnostic test for this illness nearly 4 years ago, yet further work on it has been stalled due to lack of funding.
Incredibly, if not for private donations of just $5,000 from the non-profit National Lyme Disease Foundation headquartered in Connecticut, then this reaseach would have had to be abandoned.
An additional $30,000 was donated by this organization to allow them to continue other valuable projects relating to vaccine development and disease pathogenesis.
Yet, many physicians believe that thousands of dollars of grant moneys awarded by the government to other, outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded.
3. The university and Government based Lyme establishment deny the existence of atypical presentations of Lyme and patients in this category are not being diagnosed or treated, and have no place to go for proper care.
RESULTS: Some Lyme patients have had to see, as many as 42 different physicians often over several years, and at tremendous cost, before being properly diagnosed.
Unfortunately, the disease was left to progress during that time, and patients were left forever ill, for by that time, their illness was not able to be cured.
Even more disturbing, these hard line physicians have tried to dismiss these patients as having "Lyme Hysteria" and tried to claim they all were suffering from psychiatric problems!
UNDERTREATMENT 1. Because the diagnosis is not being made, for reasons partly outlined above. 2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information. 3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy.
Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll.
4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae.
5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells.
The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared.
Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative.
6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.
The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease.
I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease. Thank you.
By: Joseph J. Burrascano, Jr., M.D. 139 Springs Fireplace Road East Hampton, NY 11937 (516) 324-7337
Bettyg
Posted by TerryK (Member # 8552) on :
There is an interesting article in this publication from 1999 that talks about how LLMD's are targeted and who might be behind it.
Parts of this article are reported on another website that I posted a few days ago.
Blue Cross Blue Shield dropped several prominent LLMD's because they were treating lyme disease. This may be the beginning of when LLMD's could no longer accept insurance.
It's clear that insurance companies were trying to steer the course of treatment and as we know, they have been partially successful, at least for some people who can't afford treatment without insurance.
The article within the Lyme Times publication is called "Lyme-Literate" doctors being targetted in "Ethics" probes.
You probably already know this but the Lyme Times is published by the California Lyme Disease Association which seems reputable to me but I'm fairly new to the lyme world so I could be wrong.
I found the article interesting and likely relevant to your project. Terry
Posted by tickedntx (Member # 5660) on :
Thank you to both BettyG and TerryK.
And yes, CALDA is an exceptional organization, and I have been scouring some recent LymeTimes for good info.
Posted by tickedntx (Member # 5660) on :
up for more ideas
Posted by Ms. Myoclonus (Member # 6750) on :
Hello, I tried to find a lot of Texas specific info, although the first article I mention is just a good overall description of the controversies.
I find it amazing that the Texas Senate, the Texas Department of Health, and the army all say there is Lyme in Texas, yet many doctors say there is no Lyme here!
Take care, Ms. Myo
Posted by Ms. Myoclonus (Member # 6750) on :
Hello, I found this very interesting. According to this link, May is Tick-borne illness awareness month in Texas as designated by the Texas Senate.
Thanks, Ms. Myo; great stuff.
Posted by tickedntx (Member # 5660) on :
Thank you, too, pq. We are looking more for specific articles that people feel are compelling rather than entire web sites, though we will also have a "links" section for people who want to learn more.
Posted by mjbucuk (Member # 843) on :
hey, did you know that Texas cattle fever is babesia. (But none of the doctors around here have a clue what babesia is!!)
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