-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Suzanne, I think the problem is... What do we do now?
We don't really even know who the enemy is. Is it the Texas Medical Board? If so, multiple Medical Boards in multiple states just happened to get the same bad idea at the same time.
The Sonoma County Lab also just decided to make their WA1 Babesia test no longer detect Babesia.
Is somebody leaning on these? Is it the CDC? The CDC has some very smart people, and they are not in general against good public health. Maybe they are too under pressure to present more favorable statistics, if key funding is to continue.
Who really is the enemy? And... if all of these bow to whoever or whatever it is, can we hope to prevail?
Not to sound discouraging... I just would like to know what or who we are dealing with.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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We have a lot of questions as well, and are looking for the answers, too. This project is in its earliest stages; we don't yet have actionable items to convey, other than to ask that as many people as possible respond to our request in the post at the top of this forum so that we can achieve a critical mass for our data.
At the moment, we are trying to get as many replies as possible to that request. I keep bumping this up because it points to that post. Sometimes "sticky" posts become invisible after a while.
You raise some excellent points. If you would want to start digging into the questions you have raised and see if you can find some answers, it would be a tremendous help.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Up --Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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There is a pattern in all of this, fingerprints if you will.
It used to be that when a problem was seen to be threatening society, all the king's horses and all the king's men would be mobilized to solve the problem. In the case of diseases, with great effort threats such as Smallpox, Polio, and many others were successfully met.
It cost alot of money though, and it didn't always work. Someone recently decided it was easier and cheaper to just falsify the statistics and proclaim the problem solved.
We can see this pattern more clearly in the financial world, where things are much less subjective, and numbers are SUPPOSED to add up.
Inflation? No problem. A few statistical adjustments for 'hedonics', and the CPI is only 3% or 4% a year... Despite that everything we pay for seems to cost 20 or 24% more than last year.
And... think how much money is saved by only giving those pesky OLD PEOPLE a 3% Social Security cost of living increase, even though the cost of the DOG FOOD they have to live on has gone up more than that this year.
Meanwhile, with triple deficits totally out of control, the electronic "printing presses" are spitting out new paper dollars like there is no tomorrow.
The broadest measure of the number of Dollars in circulation worldwide is the "M3". A ballooning money supply and out of control debt is a serious problem, and the M3 clearly shows how fast it is growing.
The solution: A sound plan to get the problem under control? No. On March 24th the government will cease publishing the M3. They are taking the battery out of the smoke alarm.
Now, back to medicine... Do we see a massive effort to find a cure, or to spot infections as early as possible while they are easier to treat? No.
We are seeing labs altering their tests so they can no longer detect diseases.
We are seeing misinformation force fed to the medical community from those in high places that are smart enough to know what they are doing.
We are seeing Doctors bullied into turning a blind eye to our suffering. We are being given junk science, junk diagnosis that lead nowhere but to a wheelchair or a coffin.
The Doctors that try to stand up are being destroyed by bought and paid for medical boards... no longer one at a time, but now 3 or 4 at a time.
The CDC has been in the forefront of the new era where disease is fought by statisticial manipulation instead of by Doctors and medicines. The numbers look better, but the people are still sick. Worse yet, they have no way to get help anymore.
Are the Doctors at the CDC dumb? Cold and calculating possibly, but I doubt they are dumb. More likely they are just beaurocrats doing what they are told so they don't lose their jobs and carreers.
These are the fingerprints of how problems in diverse areas are being dealt with now. Fix the numbers, put a positive spin on it, and cover it up.
Is the problem at the top? Or is this just in general how a corrupt society does things?
Either way, it may be an Ecclesiastes 1:15 situation, which requires a completely different approach.
If you can't fix the underlying problem, then you have to concentrate on what you can do in spite of it.
It doesn't mean give up.
[ 28. February 2006, 08:48 PM: Message edited by: James H ]
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Yes, now that I have had time to think about it.
We as patients have very limited resources to fight both a disease AND a medical system that seems to be against us at the same time. We need to use what we have wisely to have any chance of success in either effort.
We need to first of all know who is behind this and why they are doing this to us.
If the enemy means no malice but is merely misinformed, they can maybe be won over with education and publicity efforts.
If the enemy is evil and knows exactly what they are doing, they need to be exposed, attacked relentlessly, and forced to do the right thing.
We don't even know who they are, let alone what they are.
Instead of just spraying our precious bullets everywhere, we need to identify a target.
We (the patients) are mostly in the dark as far as what goes on at higher levels. We don't have access to that.
I think those with more inside knowledge need to be polled about who is the real enemy and why they are doing this to us all. This would include our past and present LLMD's, ILADS officials, attorneys that have been involved, and others with inside knowledge.
I think they know more than they will say in public. If they could be polled privately (their annonymity protected), maybe some very specific targets could be identified, along with specific issues.
Ideally, a few utterly reprehensible individuals could be singled out for public exposure and if possible legal action for the irreparable harm that their fraudulent actions have caused.
These people have caused untold harm and even loss of life. There is enough arrogance that surely they have gotten sloppy about covering their tracks. There is bound to be something actionable.
You will notice the enemy is not attacking whole organizations, they are attacking individual Doctors, and then using the medical boards, where they have absolutely no due process and no way to defend themselves. Learn from the enemy and do the very same thing to them.
Suzanne... If you have been (or can be) granted access to those on our side at high levels, find out who THEY think the real enemies at the very top of this are, and what are the REAL issues.
Ask them for their suggestions for specific targets and actions.
If they are on our side and want our help they should be willing to talk and share information.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
up, and please see additional information in the posts at the top of this forum
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
posted
I have heard that some people from other states are using TX lyme docs. Are those people wanted in this effort?
Posts: 8430 | From Not available | Registered: Oct 2000
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Excellent articles; thank you very much for pointing me to them.
Lou:
Yes, absolutely. We are interested in help from everyone. A different subject line is used to indicate if a person does not live in Texas, and they can let us know that they are seeing a Texas doctor when they respond to the questions.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
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 Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
Suzanne,
FYI, I think others may be confused as I was when they had a suggestion, etc. for you.
I believe the 1st thread says to NOT reply to this thread, so we stop reading then. Perhaps you have another 1 or 2 replies after that one with new instructions.
If you do, please put your NEW link for ideas, etc. at the beginning of your thread about this somewhere BEFORE do not reply to this email post.
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If anyone is still confused, just go to the "sticky" thread where the URL's are given to both threads. Scroll through those posts. They are clearly labeled so hopefully people will not have trouble getting to them.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Up to remind everyone to keep checking the "sticky" thread at the top of this forum for updates
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Scott said 'There is a well-known lyme doc in Houston' .......... Didn't that doctor pack up and leave the state a while back?
Posts: 758 | From now TX | Registered: Mar 2001
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posted
If he is referring to Dr. H, he has retired. There are no longer any ILADS doctors in Houston.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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