posted
DROP EVERYTHING!! IF YOU WERE THINKING YOU WON'T COME ... CHANGE YOUR MIND !! YOUR QUALITY OF LIFE DEPENDS ON IT !! CHILDREN ALL OVER THE COUNTRY DEPEND ON YOU !! THESE GUILDELINES WILL COMPLETELY CUT OFF YOUR LYME CARE, NO MATTER WHERE YOU ARE OR WHAT DOCTOR YOU SEE !!!
PLEASE PLAN TO PROTEST SERIOUSLY AND IN UNISON.
*************************************************
ALERT FROM PROTEST COMMITTEE:
ATTIRE:
Lyme Green is great but PLEASE no costumes!!!!
We need to be taken seriously! Thank you!
Lyme Rights Committee
and PLEASE be sure all signs are tasteful and clear
just come and bring people with you, and a sign if you can manage it, if not, that's OK too !!
YES, I KNOW ALL CAPS MEANS YELLING, AND I AM YELLING -- WHICH I HAVE NEVER DONE BEFORE!
THIS IS THE MOST CRITICAL EVENT WE HAVE FACED!
IF WE ALL DO NOT MAKE EVERY HUMANLY FEASABLE EFFORT TO GO, THE IDSA WILL WIN.
NOONE HERE EXPRESSING (or recognizing) ANGUISH OVER THE SUFFERING WE AND THE CHILDREN HAVE FACED RELATED TO THIS DISEASE CAN AFFORD *N O T* TO BE THERE!!!!
PLEASE SIGN UP AND MAKE YOUR PLANS TO COME.
I KNOW TRAVEL IS DIFFICULT.
I KNOW IT IS THE HOLIDAY SEASON, BUT THIS IS WHEN THE GUIDELINES HAVE COME OUT. THIS TIMING CANNOT BE DELAYED!!
(my family is facing great hardship now, but we are going)
This just in: the weather is going to be nice and in the 60's !!
LOOK --
IF THESE GUIDELINES ARE NOT ROUNDLY OPPOSED IN GREAT NUMBERS VIA BODIES PRESENT, ALL OUR DAY-TO-DAY-LIVES WILL BE DRASTICALLY EFFECTED IN A SIGNIFICANTLY NEGATIVE WAY.
i have been here a long time, and have heard every chronic sufferer voice their frustrations at the system that opressesd the recognition and treatment of Lyme disease.
ALL of those people effected should be driving, flying, bussing to face off with the IDSA.
we need to see the attendance numbers grow ten times over.
COME!!!!! this is the time to act and be heard.
if you don't, then you are sending a message of acceptance of the crimes of Lyme.
posted
Where/when is it being held?
Posts: 170 | From Vancouver | Registered: Apr 2006
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Cobweb
Unregistered
posted
I am going -but I was thinking about how events gain momentum-and this should become an annual event. LIke the quilts for Aids in DC, or Breast Cancer's Race for the Cure.
I wish we could plan regional events on a yearly basis like Ticknic in the Park or something.
Doesn't even have to be a protest-a yearly planned event -to make a statement, to draw attention, to focus our needs and I bet gain momentum-cause Lyme Disease sure isn't going away.
I'm going-and the turn out this year may be smaller than we would like-but I bet it would be bigger next year. Isn't the term "ground swell?"
I bet we have enough people locally in Md. who would join us for a Ticknick in the Park at Gunpowder in the summer- then more kids could attend,too.
At the race for the cure-friends and family members wear blue shirts-cancer patients wear pink shirts. At Ticknick in the Park we could do a similiar thing. Just brainstorming with myself. Trying to figure out an ongoing, consistent , practical(passive aggressive) way to draw attention to Lyme Disease.
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
YES, there must be a ground swell but to the steps of the CDC and Congress!!
But let's get there this time to make a major statement and to get National Press Coverage!!!
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Well, if there isn't a big turnout this year, there may not be a next year for some people. Because those guidelines are going to shut down treatment for everyone. Anyone in the NE who can walk should be thinking of ways to get there. Bring the whole family. That is the most endemic place in the country. Surely there are a lot of lymies in striking distance of Valhalla.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: Well, if there isn't a big turnout this year, there may not be a next year for some people. Because those guidelines are going to shut down treatment for everyone. Anyone in the NE who can walk should be thinking of ways to get there. Bring the whole family. That is the most endemic place in the country. Surely there are a lot of lymies in striking distance of Valhalla.
bumping this to the top!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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This is the biggest crisis we have had in Lymeland and anyone who is AT ALL physically capable should attend.
I know we have had crises before, but this is the one that could just shut us down.
ILADS (the group of doctors treating or researching chronic Lyme disease) has demanded a retraction of the Guidelines. Please check this out to see just how shocking the IDSA Guidelines. Go to www.lymenews.org and click on "links" at the left.
Maybe people don't get that these guidelines would deny us treatment.
In that case, two sample quotes will give you the flavor of how dangerous these guidelines are:
``Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic... subjective symptoms after recommended treatment regimens for Lyme disease.''
``There is no convincing biological evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.''
Remember that by "recommended treatment" the IDSA means 14 to 28 days!! Ya think that's gonna cure you?
I realize that not everyone who is now very ill will be able to attend. But please consider the urgency of this issue, and attend if it is at all physically possible.
If you don't want to take time off from work to come, please consider how you will keep working if you are denied treatment because of these guidelines.
See you there on Thursday. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
i am in california and a single mom. I WISH i could go..it would be a danger for me to go especially taking them. my sugar is always low i get motion sick... what i would love to do is also have a mini rally here in the bay area.
Posts: 56 | From bayarea | Registered: Nov 2006
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
It's a protest rally - So I'll be there!
You need bodies! So I'm going! I just wish to be annonymous and not on an official roster.
MAYBE others wish to be annonymous too!
Acorn
PS - Sorry if this sounds harsh but I've been harrassed for years. It's not fun.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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everyone going, bring a small group with you. bring your family, your freinds, your kids friends..
if you are too ill to come or otherwise cannot physically go, consider begging somone you know to go in your place.
-- and keep rallying here to inspire recognition of the situation and RESPONSE.
the organizers have legislators and media attending.
with the current circumstances and these guidelines, this is pretty much a poop or get off the pot kind of situation.
the only reason the IDSA was so brazen to put out guidelines that would recieve an F in school - is because they THINK THEY HAVE WON. so they did a shotty job, publishing a paper that can be torn to shreds if we ONLY GET THE ACTION TAKEN TO SHINE THE LIGHT OF DAY UPON IT - asking the simple question: WHAT ARE YOU BASING THIS ON?!
THEY GAVE US A GOLDEN OPPORTUNITY!!
Lyme rights groups, our doctors, legislators RECOGNIZE THIS and have all responded by backing us now, IN THIS MOMENT.
we must present bodies in large numbers. the fastest way to kill the momentum will be if it is only a small group that shows.
we gotta be there, all those who possibly can.
LET'S WORK TOGETHER AND GET BODIES TO VALHALLA, a center for the IDSA -- THIS THURSDAY !!
quote:Originally posted by MagicAcorn: It's a protest rally - So I'll be there!
You need bodies! So I'm going! I just wish to be annonymous and not on an official roster.
MAYBE others wish to be annonymous too!
Acorn
PS - Sorry if this sounds harsh but I've been harrassed for years. It's not fun.
I understand your need to remain anonymous. (and others too that may show up unannounced for this reason). But I think the organizers of this event want people to register for the NUMBER of people attending.
I'm sure (well ... no ... not sure of anything these days) I think it would be okay to register without giving any info just fill in the spaces with xxx or something.
They need to know #'s so that WE ALL can be accomadated properly (ie: restrooms, shuttle buses, parking, etc.) I, for one, don't want to drive 3hrs. and not be able to find a place to pee because there are 100 extra people they weren't planning for.
I think if people have a bad experience then they will be reluctant to participate in other events. We need to support each other first.
PS A special thanks for all those woking so hard to make this rally happen.
See you there...
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Very nice! We have potentially 200000 new cases of Lyme disease every year in the US alone and 150 people are willing to show to support the most essential action.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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if anyone is not going due to the issue of transportation (organization/costs) PLEASE don't let that stop you.
check the site www.Lymenews.org for information and contacts where you will be able to address the transportation issue. NO PROBLEM THERE.
also, anyone who can offer assistance with transportation should make contact on the site as well. we're all in this together!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I would LOVE to go but have just returned to UK from NY....I simply cannot afford to go so soon again. If I would have known about this when I booked my trip before I would have extended it by a few days.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Rest assured that the PR angle is being handled. The number of people attending the rally will make the difference in getting the media coverage we so desparately need!
Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
anyone who lives within 3 hundred miles of this event and does not attend is a traitor. pure and simple.
if you can't drive, find someone who can. if you can't find a driver, pay for a 300 mile cab ride. ride the bus, take a train. the trains run from DC all the way to boston. it's a short cab ride from the station to valhalla.
the airport of choice is westchester county airport. cars can be rented there and cabs are always available. very short jump from here to the wormhole.
I know, I've done it before.
it will be, in the long run, far better spent than spending that money on anything else.
take a day off of work. do whatever it takes.
if you live within a day's drive of valhalla and you skip out, its' like skipping out on voting. you've lost your right to complain.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
the strongest message we have to convey, is that these guidelines deny patients acess to the TWO STANDARDS OF CARE for Lyme disease.
there are TWO standards of care (see johnson/stricker at the CALDA site) for Lyme. like breast cancer/prostate cancer and other diseases, there are more than one accepted standards of care. (ie: in breast cancer, they were only informing women of mastectomies, long after lumpectanies were available. pateint rights groups PROTESTED, and made the demand that BOTH standards were supplied patients, and they WON)
what these Lyme disease guidelines are doing, is denying the public the basic right to access and knowledge of the other standard.
the repressive IDSA guidelines are a violation of our civil right to medical care choices.
this is a strong and viable/necessary argument to make!!
ILADS has done all this work for us. USE IT !!!
be in valhalla, as this is what you will be standing for - if you absolutely cannot, do everything possible to compell others to go in YOUR place and be counted. NOW IS THE TIME!!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Mo/others,
I'll contact a couple of online friends who live in the area to see if THEY could attend for me!
I can't come, but this is what I'll be doing back here locally. I'll be picking up ALL THE PETITIONS in the 14 places I have them in town.
Then I'll start the tedious job of entering them on Lynne's using my SHORT-CUT method, and the LDA petition, which has NO short cuts and timeconsuming!
So though I'm unable physically to be there, I'll be working my butt off this way supporting the cause in CONGRESS!
How about others NOT able to attend to work on getting more names for BOTH PETITIONS, and entering them online for all those sitting at the rally? I hope I get MANY offers of people accepting my challenge to YOU!
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posted
i just got an email making an important point.
THIS is NOT a "rah-rah" rally ..
this is a PROTEST
an outraged, fight for your right to care PROTEST !!
we must have large, impressive numbers in order to hope to stop the impact of these guidelines.
please, the IDSA guidelines instructing doctors NOT to treat Lyme, NOT to use any class of ABX except a small ration of DOXY are already being circulated and acted upon.
WE ARE LOOSING OUR PREVIOUS ACCESS TO CARE, as well as the political stand it has taken 25 years to gain.
PROTEST FOR YOUR LIFE, CHILDREN'S LIVES, AND THOSE YET TO BE EFFECTED
posted
I just want to let people in the northeast corridor to know this:
having picked up lyme while on one of numerous trips to visit relatives including very close to lyme CT, I had a very severe trial of late CNS disease, long lasting. my experiences were torturous. my life and those of my loved ones was shattered into a thousand pieces.
Now, I live in Oklahoma because I have to live near my parents and also for insurance network reasons.
I am DRIVING to valhalla, leaving tonight. I have an MD appointment up there in early december, and I decided to just leave early so I could attend the rally.
That is how important this rally is. Please attend if at all possible.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
can we hire lyme doubles like the movies. dodave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Cobweb
Unregistered
posted
quote:Originally posted by Mo: i just got an email making an important point.
THIS is NOT a "rah-rah" rally ..
this is a PROTEST
an outraged, fight for your right to care PROTEST !!
Oh Great- I just reassured my daughter this was a stand up and be counted rally-not a protest.
I think she is worried about my going-and my coming back to her. I told her she could come too but she doesn't understand the political aspects of it and doesn't like being away from familiar surroundings.
She doesn't understand why I am so angry and insulting towards doctors. She's uncomfortable when I call them IDIOTS and EVIL. I didn't want to point out the fact that we are practically homeless today because of them.
I told her I don't fully understand the political aspects of it either-I just knew this was something I had to do-for her and for her children's children.
posted
We need to take our cue from Aligondo B. This is one of those time when there are very few acceptable excuses.
If you need serious ABX, or think you or your family might at sometime, you need to be at this protest. It is that simple.
Short of facing life-threatening consequences or the moral equivalent if you attend, you really do need to show up!
I consider this event something that merits borrowing money to attend if necessary!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
I'm getting up early and driving from Boston. Picking up a few more Lymies en route. There's still room for a few more. Need a ride from MA, send me a pm.
this is the most critical action we have had to take.
only due to the most extreme circumstances should any one of us, nation-wide, not be coming - you all must know this by now. the impact of these guidelines is wide-spread and utterly staggering.
-- and those coming should bring a car load and another beside it.
this is do or die.
m
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
yea but even the 400 all refer to the same handful of origional papers. (most likely written by the riotten 14 themselves)
just holding them accountable by actually CHECKING the 400 footnotes would wipe these guidelines off the credibility map. not to mention the ignorance of 95% of the available research base!!!!!!!!
DEMAND ANSWERS, DEMAND INVESTIGATION !!
that's why this protest and it's timing are so important.
their guidelines are BOGUS and can be proven as such IF duly challanged!
good luck with the gall bladder surgery human being!
[ 28. November 2006, 04:42 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
*****One idea I had was a sign that has the number of studies on lyme (4,000 I think) and the selected few reviewed to determine the new guidelines 400).****
Total is more like 16000 not 4000.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Since there is no way that I could attend, I calculated how much it would have cost me to go, and then contributed that amount to help sponser another attendee. Just a thought for others who can't go, but have some ability to help financially. Plus, I feel a bit less guilty about not being able to go Kristie
Posts: 31 | From Arlington, VA USA | Registered: Aug 2005
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posted
My compression fracture in my spine will keep me away. It is killing me. Or I would be there in a heartbeat. I looked for air connections to Westchester County Airport...no luck. Husband says he will tie me to a tree if I try to leave.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Cool! Anybody from Danbury on-line now? How about going over to the local commuter rail station and passing out copies of the protest flyer in the parking lot that has folks waiting to pick someone up from the train?
This article from the paper should make the issue of treatment for Lyme fresh in their minds.
I would target the drivers rather than the commuters. Might find more prospects that way who are free to come to the Protest tomorrow.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
Mo and everybody, This is great! You have really been able to convey the sense of urgency about attendance at this protest.
When we really look at what's being done to us, this is outrageous. We are demonstrably very sick, are demonstrably helped by treatment and are being denied help by a few smug, self iimportant "doctors" who seem to be legends in their own minds. You willing to get even sicker to please their egos?
You and I know that if Dattwyler's kid or Wormser's kid developed chronic Lyme disease, they would get all the treatment they wanted, And if Nadelman's kid got bitten by a tick, you can bet he'd get more than two doses of antibiotics.
But for your kids, it's okay to leave them sick!
Please come. This is the most important rally we have ever had. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
Make a sign for the millions of us who want to be at the rally but aren't...
Something like:
Representing millions of Lyme/co-infections sufferers/supporters who would like to be at this rally!!
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
Mo, I'm like that too .. can't sleep for important events!
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posted
"We shall defend our island, whatever the cost may be, we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender."
Winston Churchill
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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