[ 02. March 2006, 12:12 AM: Message edited by: tickedntx ]
Posted by tequeslady (Member # 6832) on :
What brought this on? I read somewhere that a Nurse Practitioner in Austin was moving to CA. Is this G.S.? Was she harassed or something?
Posted by James H (Member # 6380) on :
Texas is well on its way to completely eradicating reported Lyme Disease at its source... Doctors. Ticks don't report Lyme Disease, Doctors do. No Doctors, no reports.
Harrassed is an understatement!
Posted by geniveve (Member # 8646) on :
well all i can say, is quack, quack, quack........
Posted by tickedntx (Member # 5660) on :
Just a reminder not to discuss specifics of the situation of any medical professional in open forum, even if the full name is not used.
Posted by bettyg (Member # 6147) on :
Suzanne, just emailed you both with my info from an out-of-stater!
Posted by SForsgren (Member # 7686) on :
Hmm... There is a well-known lyme doc in Houston and Dr. C in Fort Worth. So, there are still some there that are in active practice from what I understand. I am not suggesting that they have not been attacked, but they are still a resource for people in that state.
Posted by Lymetoo (Member # 743) on :
As per the link above....QUESTION...Why do we need to tell them WHO is treating us. Doesn't that put the LLMD we are seeing in peril also, even if in another state?
Posted by Andie333 (Member # 7370) on :
James,
Thanks to your post above, I just had this image of ticks sitting in waiting rooms, filling out next-of-kin and previous illness forms...
Must be the mood I'm in, but I'm always grateful for the smile. Andie
sorry to be momentarily off-topic...this particular topic scares the h*&l out of me.
[ 19. February 2006, 04:49 PM: Message edited by: Andie333 ]
Posted by Annie M in SWTX (Member # 8828) on :
Yes, this crap is happening everywhere. It's not just TX, look at the attack on Dr J in NC. A pathetic attempt to discredit him, I think. It also smelled like a "set up" if you read any of the news stories.
I also feel squeamish about filling out that form and "ratting out" MY llmd. I've been getting treatment for the last 2.5 years and without it I might have lost my mind ... not to mention my job, health insuarance, house, car, and probably my dogs and I would be living under a bridge somewhere - starving.
I like the idea of protecting our llmds, but this also stinks of a set up... to seek them out and finish them all off.
No thank you!
AM
Posted by bettyg (Member # 6147) on :
deleted .. bad email address ending in .comm vs. .com
[ 20. February 2006, 09:02 AM: Message edited by: bettyg ]
Posted by DR. Wiseass (Member # 6777) on :
Ticked --
Can you give us any assurances about HOW this information will be used?
Won't this just be for STATISTICAL purposes only? Our names & doc names won't be used publicly, right?
Posted by tickedntx (Member # 5660) on :
Scott: >> Hmm... There is a well-known lyme doc in Houston and Dr. C in Fort Worth. So, there are still some there that are in active practice from what I understand. I am not suggesting that they have not been attacked, but they are still a resource for people in that state.
Yes, there are still doctors practicing in Texas, but if we do not act, then there won't be for long. We are now going to do in TX what has been done in CA and NY, and that is to gain protection for our doctors before we lose any more.
Dr. W: Yes, the information is being used for statistical compilation only. When we go to state legislators, we need to be able to give them an idea about how many people we are talking about. They are not going to do much to help, say, 5 people. Names of patients and doctors will NOT be used.
We are asking from which doctors people are receiving treatment to get a feel for how many doctors there are in TX who treat Lyme, and in which regions of the state they are practicing. Again, this information will be used only to compile statistics, numbers not names.
We might be able to use this information, for instance, to tell a lawmaker that while there are x number of patients in his district who have Lyme, there is no one there to treat them, probably because they do not want to risk their medical license, and these people need their help.
We might tell another lawmaker that there are y number of doctors in their district who are treating Lyme, and thus motivate him to take steps to protect them.
Annie M in SWTX: >> I like the idea of protecting our llmds, but this also stinks of a set up... to seek them out and finish them all off.
Please check my stats. I have been around this board for almost two years. This is not a setup. The only thing that stinks is what the TSBME is doing to our doctors.
David and I have assumed the risk of providing our full names at the end of our post to give us credibility.
Having said that, anyone who is not comfortable providing all of the detail requested is free not to do so. While we would prefer the additional information to help compile statistics, the minimum that we need in order for you to support this effort is your email address, whether you were infected in TX, if you are being treated, and if you are having to travel outside of Texas for your care.
All: I understand the reasons behind the questions and concerns, and hope that I have successfully addressed them.
Please, though, lets dispense with the paranoia in this thread. If you still have concerns about who I am, please contact Lou B. If you have questions about how information will be used, post them here, but 86 the inuendos and accusations.
This thread needs to be a constructive one.
Posted by DR. Wiseass (Member # 6777) on :
Thank you so much Suzanne & David for your efforts on OUR collective behalf.
It takes a lot of time, energy, and perserverance to begin a grassroots effort and I fully support it!
I have sent you my info.
And YES, paranoia will NOT be useful in this thread -- only counterproductive! Let's stay focused!
Hugs & Posted by SForsgren (Member # 7686) on :
I think people should consider responding to this and simply not provide your doctor information if you are not comfortable. I have responded as I think this is critically important, but I have not disclosed any specific doctor details
Posted by James H (Member # 6380) on :
If you are concerned about 'ratting out' who your Dr. is to someone you communicate with every day here, just use the Dr's initial like we do in public.
It is not like there are enough LLMD's left that we don't know who they are by their initial.
By the way I just got an email from the NP in qestion. This is very legitimate. Please assist.
It is time to step up and help however you can, if you don't want to be reduced to taking medicines made for chickens and pigs.
Nobody is even asking for money this time.
Posted by vitch (Member # 8094) on :
One of the reasons this continues to happen is because the Lyme Disease patients have not ALL gotten behind their LLMDs. Some have but not ALL.
Do you want this thread to be passed on to other boards?
Posted by James H (Member # 6380) on :
In my opinion a big problem is the response is almost always defensive, not offensive.
Somebody throws a knife, and they duck. Nobody ever pulls the knife out of the wall and throws it back at the perpetrator with intent to do harm and send a message to the other would be knife throwers.
Posted by vitch (Member # 8094) on :
James
They know how to throw knives and they get the government to do their dirty work. We don't know how to do either.
Please read James' post and tell us what we can do to go on the attack.
Posted by James H (Member # 6380) on :
re: Throwing the knives back...
I was speaking about the strategy of associations like ILADS. As individuals we can do things that count, but taking on this enemy in an aggressive manner on our own is probably out of our league. For most of us. Posted by tickedntx (Member # 5660) on :
vitch: >> Please read James' post and tell us what we can do to go on the attack.
We are formulating strategy now. We know that everyone's energies are limited, so we want to have a coherent plan of attack when we start making specific requests to make best use of that energy.
Our email distribution list will consist of people who are emailing us since that will be the easiest way to keep in touch with everyone.
We will, though, post updates in the thread at the top of the page when appropriate.
What happens in each state will affect all states sooner or later, so we do want to keep the community at large informed.
Suzanne
Posted by tickedntx (Member # 5660) on :
SForsgren: >> I have responded as I think this is critically important, but I have not disclosed any specific doctor details
Actually, we don't really need to know who you are seeing if you do not live in Texas since our statistics in this regard will be specific to Texas.
Texas patients who are concerned can provide initials (or not) and city/town for their docs.
If you are in Texas and traveling out-of-state to see a doctor and do not want to give his/her name, tell us how many miles you must travel.
[ 20. February 2006, 01:37 AM: Message edited by: tickedntx ]
Posted by 5dana8 (Member # 7935) on :
hey tickedntx
If we are not from TX should we still respond? And how will this information help TX?
Posted by tickedntx (Member # 5660) on :
5dana8: >> If we are not from TX should we still respond?
Yes, please, if you are willing to support our efforts when the time comes to contact Texas state officials, as was done for NY.
5dana8: >> And how will this information help TX?
I assume that your concern is with revealing doctor info since the other questions don't pertain to people who do not live in Texas.
Information about doctors is really only needed for people living in Texas.
All: The information which we requested will tell us where people live, how far they are traveling for medical care, if they were infected in TX (important since the official position is that there is no Lyme in Texas), and if they know anyone who will be able to provide us with access to state officials and the media.
From the messages which we receive, we will create a distribution list to disseminate requests to write letters, to make phone calls, to provide updates, and to request additional information which will be used for compiling statistics to present to state officials.
Posted by 5dana8 (Member # 7935) on :
Ok- thanks tickedntx
Posted by bettyg (Member # 6147) on :
Suzanne or David,
Did either of you receive the info I sent this afternoon? One came back which I posted above. Thank you.
Bettyg
Posted by tickedntx (Member # 5660) on :
Hi Betty:
I did not receive anything from you. Can you resend to us?
Try copy/pasting the addresses to make sure you get them right.
I'll be looking for your message and will reply to it when it arrives so you will know I got it.
Thank you for your persistence.
Suzanne
Posted by tequeslady (Member # 6832) on :
There is only one "m" in com, you have 2.
quote:Originally posted by bettyg: This was in my in-box! Guess neither of them is going to go thru from me thru yahoo mail!
: Sorry, I couldn't find any host named gmail.comm. (#5.1.2)
Posted by bettyg (Member # 6147) on :
quote:Originally posted by tequeslady: [QB] There is only one "m" in com, you have 2.
Thank you for your observation as to what the compuer said.
However, Suzanne I just tried again, and BOTH times I copied/pasted the 2 addys you showed above! Can't figure out how the .comm occured since I didn't type it, and it's NOT in your original post above.
Gosh, I hate it when the pc is smarter than we are! Bettyg
Posted by tequeslady (Member # 6832) on :
Betty, I was just trying to help you. Sorry if that irritated you.
quote:Originally posted by bettyg:
quote:Originally posted by tequeslady: [QB] There is only one "m" in com, you have 2.
Thank you for your observation as to what the compuer said.
However, Suzanne I just tried again, and BOTH times I copied/pasted the 2 addys you showed above! Can't figure out how the .comm occured since I didn't type it, and it's NOT in your original post above.
Gosh, I hate it when the pc is smarter than we are! Bettyg
[ 20. February 2006, 09:59 AM: Message edited by: tequeslady ]
Posted by tickedntx (Member # 5660) on :
Hey Betty:
Got 'em both! Just sent you an acknowledgement reply. Thank you also for your great suggestions.
Suzanne
Posted by groovy2 (Member # 6304) on :
Hi All
What Suzanne is doing is a Very Important to each and everyone of US --
It is Very Much in your Self Intrest to fill out the info requested ---
I know Suzanne and she is a Women who takes control of the situation -- and gets things done --
Suzanne has done Many things in her time here to Help Everyone of US - that many of you dont know about --
I have Zero concern that My (Our) info would be used in a careless way --- Jay ----
Ps- my info is on the way --
Posted by tickedntx (Member # 5660) on :
tequeslady: From my read of her post, Betty is not irritated. She is trying to figure out how she misspelled my email address, and then she's laughing at herself.
Posted by tickedntx (Member # 5660) on :
Hi Jay:
I very much appreciate your support and vote of confidence.
I absolutely understand why people are concerned, and appreciate the opportunity to address those concerns through discussion here.
We have been hearing from a number of people, but if we are to be successful in our effort, it will take many more, especially Texans.
Suzanne
[ 20. February 2006, 03:03 PM: Message edited by: tickedntx ]
Posted by Linda LD (Member # 6663) on :
My doc is under attack too--it looks almost planned...it all hit the fan at once.
Posted by sactko (Member # 6237) on :
up
Posted by bettyg (Member # 6147) on :
quote:Originally posted by tickedntx:
tequeslady: From my read of her post, Betty is not irritated. She is trying to figure out how she misspelled my email address, and then she's laughing at herself.
Suzanne, you are correct! T, I wasn't irritated at you. I always try to learn from my mistakes so I don't repeat them & couldn't figure this out since I copied/pasted and not typd email addys. Peace ok!
Bettyg
Posted by kmr57 (Member # 8752) on :
I wanted to preface my post by saying that I understand the concerns of some expressed in protecting themselves, their families, and their practitioners from scrutiny. It is indeed a dangerous time for those willing to treat Lyme patients and those in need of treatment.
We cannot, however, hide and hope not to be found or our practitioners rooted out. We must change policy so that all Lyme patients can recieve the treatment that they desire and need. We must assure practitioners that their practices--their livelihoods will not be threatened.
I would strongly encourage all Texans (and those elsewhere who were infected in Texas) to submit as much information as they can without putting their practitioners at risk. Statistics are absolutely needed in order to present a convincing and realistic picture of the difficulties Texas Lyme patients and practitioners are facing, and the extent of disease here.
Yes, there are a couple other known practitioners to see in Texas. They cannot accept all the patients that will be left behind, as each practitioner is rooted out, and forced to quit seeing Lyme patients or moving to other areas they can safely practice. How long will they be willing to treat Lyme patients when they see the repercussions that their colleagues face?
This won't stop with Texas---it will affect all, I am afraid, no matter your location. Fortunately we do have a few states who have gone before us. We each must be prepared to fight for patient/practitioner rights to treat in our own state.
There must be those willing to pave the way, and take on this grueling task (as Suzanne and David are doing) and it will make for better outcomes when they begin knocking at your doctor's door, and digging through his/her patient charts, and dragging them before boards.
As far as Suzanne, I have known her online and in real life for a number of years. We see the same practitioner. Suzanne is and has been very proactive and a great support to the community. She has started four online message boards to disseminate information and support (that I know of), and I am fortunate to be a moderator on one that she helped found. She is a very capable, devoted, individual, and has the convictions to see this job through. She enters into every endeavor with unmatched determination.
I can think of very few who in the face of such a huge task, I would like to have going to bat for my family and I. Between David and Suzanne, I feel my children, their grandparents, my husband, and my grandchildren and I, have found those who will work hard and effectively on this endeavor.
BTW, I have four generations of Texans in my family, a total of six, suffering from Late-stage Lyme, Co-Infections, and Morgellon's, all infected and being treated in Texas. Another, my grandson, presented less than a year ago with a classic bullseye rash and received an immediate appointment and was treated.
We chronic Lymies in my family will be having our last appointment in Texas this week. The proverbial rug has been pulled out from under my family's feet.
Thank goodness there are those, who are willing to tackle such seemingly insurmountable challenges. David---Suzanne---hats off to you each of you for your willingness, in spite of being ill yourself, to undertake such!
Karen M. Rather, disabled Lyme patient, and on behalf of my ill children, Laney and Tiffani, my grandson, Caleb, his great grandparents Jackie and Herb, and my dear husband, Jay, all infected on a ranch in a state where countless doctors told us "there is NO Lyme in Texas", and would not test, nor treat. (All patients subsequently positive on Western Blot when we found someone who cared, was knowledgeable, and willing to test and treat.)
There are names and real people behind Lyme Disease---whole families and individuals in need of treatment, and frankly I have nothing to lose by hiding in fear anymore, being found allows me the freedom to strive for change, to be an advocate with a face and a voice.
Mods: please leave names intact.
Posted by tickedntx (Member # 5660) on :
Karen has written very eloquently, and very courageously, about a very important point.
We Lymies hide. We often don't tell our family, friends, neighbors, friends, employers, even some of our doctors that we have Lyme disease for fear of repurcussions.
Many of our doctors hide. Not all, there are a few very brave souls out there whose publications are plastered all over the internet, or who are active in ILADS, or otherwise make it known that they treat us. These are the courageous ones who are willing to place their medical licenses on the line to help us.
Then there are doctors who will treat Lyme for existing patients but don't want anyone to know. (And, really, can you blame them?)
And, of course, there is the vast majority who won't even see us.
It's time for all of us to come out of the Lyme closet and be seen, heard, and counted. Stand up, stand out, and tell your story. To everyone who will listen, and even some who won't.
It's a cliche but it's true: If you are not part of the solution, you are part of the problem. And if you are not part of the solution, you will have no right to complain if you wake up one morning and there are no doctors left in the state to treat you.
We are in this position of losing one of our primary Lyme practitioners because of our own complacency. In our own defense, we were lulled into a false sense of security because we thought that Sen. Harris had our backs. We don't yet know why he has not been there for us since 2001, but it doesn't matter. We need to get him back, and to get the rest of our legislators and other state officials on board.
TEXANS AND PEOPLE WITH FRIENDS IN TEXAS: Please ask everyone you know (and ask them to ask everyone that they know, and so on and so on and so on) if they have connections to any state officials, including the governor, senators, state representatives, the Attorney General, members of the TSBME, state health officials, the media...
Then please let us know. We need to get the attention of people in a position to effect change.
And for those who have not responded to our "Texas Mobilizing" post at the top of this forum, please do so. Now.
[ 21. February 2006, 04:20 PM: Message edited by: tickedntx ]
Posted by tickedntx (Member # 5660) on :
up
Posted by tequeslady (Member # 6832) on :
Sure, Betty. Sorry. Sounds like I misunderstood.
quote:Originally posted by bettyg:
quote:Originally posted by tickedntx:
tequeslady: From my read of her post, Betty is not irritated. She is trying to figure out how she misspelled my email address, and then she's laughing at herself.
Suzanne, you are correct! T, I wasn't irritated at you. I always try to learn from my mistakes so I don't repeat them & couldn't figure this out since I copied/pasted and not typd email addys. Peace ok!
Bettyg
Posted by sizzled (Member # 1357) on :
Up for Texas!
Posted by tickedntx (Member # 5660) on :
We've had 53 repiles from Texas so far. We need many more.
If you live in Texas and have not yet responded, please take a moment.
Instructrions are in the first post at the very top of this forum.
Posted by James H (Member # 6380) on :
The various Drs. in the state maybe could give you some approximate numbers for their practices withoug compromising any confidentiality... especially if they were assured that their numbers were just being added to a total for the state and would not be disclosed individually.
Maybe alot of people do not use computers or hang around on Lymenet.
Posted by tickedntx (Member # 5660) on :
Hi James:
Yes, we are trying to work that angle, too.
Thanks, Suzanne
Posted by tickedntx (Member # 5660) on :
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Posted by tickedntx (Member # 5660) on :
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Posted by FightFireWithWater (Member # 5781) on :
So sorry to hear about this giant step backwards for Texans!
Unfortunately the crisis underlines the precarious situation all Lyme patients are in. At any moment your Dr. or State could become the focus of an atack for daring to admit there is a problem or trying to help.
Eventually the truth will surely prevail, but unless we work diligently, the lives and health of many patients and families will have been destroyed in the meantime.
"Do not go gently into that good night..." This generation matters too!
Consider carefully what role you want to play in this struggle, what will really be useful, and then go to it, one small step at a time perhaps, but prepared to dig in for the long haul.
Posted by tickedntx (Member # 5660) on :
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Posted by tickedntx (Member # 5660) on :
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Posted by tickedntx (Member # 5660) on :
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Posted by James H (Member # 6380) on :
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.
Posted by tickedntx (Member # 5660) on :
James:
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
[ 27. February 2006, 10:21 AM: Message edited by: tickedntx ]
Posted by tickedntx (Member # 5660) on :
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Posted by tickedntx (Member # 5660) on :
[ 28. February 2006, 12:29 AM: Message edited by: tickedntx ]
Posted by groovy2 (Member # 6304) on :
Up --Jay-
Posted by James H (Member # 6380) on :
Well, here are a few of my observations...
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 ]
Posted by tickedntx (Member # 5660) on :
James H.:
Do you have any specific recommendations?
Suzanne
Posted by James H (Member # 6380) on :
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.
Posted by tickedntx (Member # 5660) on :
up
Posted by tickedntx (Member # 5660) on :
up, and please see additional information in the posts at the top of this forum
Posted by TerryK (Member # 8552) on :
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
Posted by lou (Member # 81) on :
I have heard that some people from other states are using TX lyme docs. Are those people wanted in this effort?
Posted by tickedntx (Member # 5660) on :
Terry:
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.
Posted by TerryK (Member # 8552) on :
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
Posted by bettyg (Member # 6147) on :
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)
Thanks again!
Posted by bettyg (Member # 6147) on :
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.
Posted by bettyg (Member # 6147) on :
duplicate post
Posted by tickedntx (Member # 5660) on :
Betty:
There is a "sticky" thread at the top of the forum which is strictly informational to make it easy for people to find actionable items.
There are now two additional threads. This thread is a discussion thread about protecting LLMD's in Texas.
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.
Posted by tickedntx (Member # 5660) on :
Up to remind everyone to keep checking the "sticky" thread at the top of this forum for updates
Posted by mjbucuk (Member # 843) on :
Scott said 'There is a well-known lyme doc in Houston' .......... Didn't that doctor pack up and leave the state a while back?
Posted by tickedntx (Member # 5660) on :
If he is referring to Dr. H, he has retired. There are no longer any ILADS doctors in Houston.
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