for updates and to sign up - it's important to have an idea of how many people to expect & what states will be represented.
Together we CAN make a difference!"
Yes.. be sure to sign up so the press can know (packages of info need to be prepared for them in advance) how many people approximately will be there and how many states will be represented.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Posted in Activism by Metallic Blue:
Chronic Lyme Disease Is Real! Got Chronic Lyme? Honk Horn! Lyme Disease: It's All In Your Head!? Tick Bite? Don't I Get Superpowers? Lyme: Easy To Catch, Hard To Cure! IDSA vs ILADS: ILADS Favored. Kids & Ticks? Protect The Kids! Tick Check When Active Outdoors. Lyme: 2-4 Wks Abx Not Enough! Fibromyalgia? It Might Be Lyme! Chronic Fatigue? It Might Be Lyme Autoimmune? It Might Be Lyme! LymeDiseaseAssociation.Org Protect Literate Lyme Doctors! I Don't Look Sick, I Have Lyme. Lyme & Co-infections = Bad Lyme: Long Term Antibiotics Help. Tests For Lyme are Inaccurate! Lyme Tests: False Negative Common. Lyme, Studies Show Persistent Infection Myspace.com Lyme Disease Support Lymenet.org: Lyme Disease Support
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Some I made up, some I lifted from other places:
Lyme Disease: Coming soon in a tick near you
Small tick, Big Disease
Got Lyme????
A bad tick made me sick
Lymetards Unite!
Lymies Unleashed
Ticks suck in lymeland
Lyme Disease: One bite was all it took
Lymed at first bite
Sucker punched by Lyme disease
Lyme disease sucker punched me
Lyme Disease....this ain't no party....this ain't no disco...
My life is an endless battle against Lyme disease.
Lyme's a *****
Lyme Happens
Lyme disease....stop the madness!
Lyme disease ruins everything.
Lymed
Lymed and hating it
Ticks Suck
Lyme Disease Robs you of everything that matters
I'd rather be lyme free
Lyme Disease devastates lives.
It all started with a tiny tick...
Tick Sick
Lyme disease is the worst thing that ever happened to me.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Roses are red, Violets are blue. Lyme stole my life, How bout you?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ticks aren't choosey; will you be next?
This is what Lyme Disease looks like on the outside
No one wants to live in Lyme World
Let's make Lyme Disease Extinct!
Lyme Disease Cripples every part of you
Lyme Disease...Everyone is fair game
Lyme Disease is spreading
Lyme Disease: Hard to Diagnose, Hard to Treat
Stop the Madness! Treat Lyme Disease Effectively!
Stop the IDSA Propaganda!
Tick Tock, Time for Lyme is Running Out!
Lyme can Kill, Hear our Bill!
Bring our Bill to the Hill!
Hear our Bill on the Hill!
IDSA's an angry dog with a bone Don't be fooled, Frank Pallone!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Our bill must be heard Or you are a big fat turd!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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tincup, don't forget about last fall's protest; hopefully someone has time to go to ACTIVISM and find all the SUGGESTIONS given at that time that can be used this time also!
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It's all in your head, and the rest of your body too.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Pres. Bush has Lyme
(This will explain it all)
Lyme, The Forbidden Government Fruit
If life gives you Lyme, squirt it in the IDSA's eyes!
What if we picked a day where everyone in every state put out signs on the same day? Forgive me if there is something like this already. But if not, could we get this started? Ill go post this also in activism?
[ 25. April 2008, 01:21 PM: Message edited by: LisaS ]
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Oh, last night on Grey's Anatomy, the blond doctor, Izzie, was extensive in testing a patient who had just come in for an injured ankle.
He had some rash, but they did not show it. Lyme was just one of the things she tested for but SHE DID IT WRONG.
She mentions running a TITRE test, implying the ELISA. Also . . . as he had a current rash and had just spent time on the east coast, if he had gotten a tick bite on that trip he may not have developed any antibodies yet.
Turns out NOTHING else was wrong and the patient (Cheech Marin - sp>) was furious and Izzie learned that you just don't run so many tests and pronounced that he was fine.
She never said, "let's see that rash" or " let's test the rash" or " keep an eye out" or " just in case" . . . or "let's run a different test," etc.
It was a scene intended to keep the "what if's" in the same place they've been for decades.
Too bad there were errors. Incomplete and, therefore, bad writing.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! I sure got MY giggles today! You all are too funny! tee hee hee...
And thank you all. I am NOT able to come up with anything (brain down)... so this is great. The link has been sent to the right folks... so keep adding all you can for them to see.
posted
The stranger the symptoms, the more likely to be Lyme.
Lyme is only one of many tick-borne diseases. Co-infections can kill and disable also.
Why is a PCR test the gold standard for diagnosing many diseases, but docs say it doesn't count with Lyme Disease?
IDSA docs go back to medical school -- antidepressants do not cure an infection.
Been tested for everything and told there is nothing wrong with you -- THINK LYME.
20 plus neurologists told hubby to see a psychiatrist -- 1 neuro finally said only an infection or a toxin could cause your symptoms -- but it can't be Lyme. It is not just Lyme -- it is also Babesia and Bartonella and maybe Mycoplasma and Ehrlichia as well.
Seeing the country from doctors offices in 13 states is not my idea of fun.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
ok here's one :
Pres. Bush consulted ILADS for his Lyme
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
PALLONE, ASK IDSA ABOUT THEIR SAFER, MORE EFFECTIVE TREATMENT FOR CHRONIC LYME... Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
One little tick was all it took To lose my life to the IDSA crooks
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Take our bill on up the hill To fetch a place on the agenda Don't fall down with the IDSA clowns Cause we'll all come tumbling after
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hundreds of Lymies sat on the wall Watching the IDSA have a great fall All of the Wormsers and Steeres and such men Couldn't push their protocol on us again!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are doing funny!!! I was going to say fine but I am laughing! GOOD STUFF!!!
This is helping the committee VERY much!!!
As you can imagine they are busier than bees right now.. and really need the help!
posted
What do we want? A Lyme bill hearing! When do we want it? Now!
*************************************
Frank Pallone, set the tone - Help make the world a Lyme-free zone!
*************************************
Frank Pallone, do the right thing! Move the Lyme bill for a hear-ing!
*************************************
The world cannot afford to wait! A Lyme bill hearing before it's too late!
*************************************
Hey, hey, ho, ho! Lyme disease has got to go! Hey, hey, ho, ho! The IDSA has got to go!
Hey, hey, ho, ho! A Lyme bill hearing's the way to go! Hey, hey, ho, ho! Fight Lyme disease - spend the dough!
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
[QUOTE]Originally posted by robi:
Pres. Bush consulted ILADS for his Lyme
robi, adding ONE word to end!
Pres. Bush consulted ILADS for George's LYME TREATMENT! ***********
TRACY AND DAISE; you 2 are on a good rhyming roll; all outstanding; i'm still chuckling too on some of these!
many would be good as CHANTS!! *********************************
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posted
Crying..... Because We're Dying
Posts: 339 | From nowhere | Registered: May 2007
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Cobweb
Unregistered
posted
suggestion- in order to give credit where credit is due-I think we should post the original source when submitting slogans originating from others-just in case there is a copyright or infringement law.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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daise
Unregistered
posted
seibertneurolyme,
quote: You wrote:
Just give us 5.5 hours -- The war in Iraq is costing $5000 per second -- 5.5 hours (100 million) is what Lyme patients are asking for.
That's a good way to put it. Maybe that would be good to see in writing, like in the press--or in emails to Congress members.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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daise
Unregistered
posted
Tracy and Robin,
I think some of your chants for the crowd are #1 winners!
Thanks IDSA for creating the Lyme medical nightmare
IDSA equals BAD MEDICINE
5 visits to family doctor, 4 neurologists, 3 gastrointestinal docs, 2 endocrinologists, 1 ENT and none of them could diagnose me!!! (sung like a partridge in a pear tree)
Lymerix vaccine equals lyme disease
Lymies are fighting back!!
Lyme the other bad four letter word!!
We've had it with IDSA and we're not going to take it anymore!!
Ticks bite, IDSA SUCKS!!
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Data Over Dogma Evidence Over Egos Patients Over Politics. -EJ Masters
That says it all!
It still irks me that IDSA owns the patent to his discoveries of the "LYME-LIKE" illness in the Ozarks or Borrelia masteri. The CDC still won't acknowledge it as anything more than "Lyme-like."
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Just a couple of thoughts very early this am.
Cancer patients don't have to fight for treatment. Why do we?
Cut through the bureaucratic red tape
It is our lives that are at stake.
Since when are personal agendas and gain more important than our children's lives?
Help support the Lyme Bill.
Freedom of choice in US. Not when you have Lyme Disease.
Help us get well. Lyme disease is a living hell.
Don't let the IDSA play "God" with our lives!
Okay...I'll admit it....insomnia......again.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm sorry, I haven't read this thread yet, please excuse me if someone already hit this issue.
I just got a reply from Sen Lautenberg to en e-mail I had sent a while back. He is supportive of the bill.
In his reply he stated:
"As you know, Lyme disease is a common, but often misunderstood, disease that affects more than 23,000 Americans each year.
Although this disease can often be treated with antibiotics, it can also cause serious and long-lasting health problems, especially if it is misdiagnosed or undetected.
As such, it is essential that we continue to research and increase awareness about this widely underreported disease."
This brought to mind a key issue we should try to address. "more than 23,000 Americans" = how many voters? That figure is a gross underestimation, relying on CDC reported cases.
The CDC states that their figure, due to the limited reporting criteria, would actually more likely reflect (something over 200,000? ?) infections. We need to find the CDC quote & plaster it in signs.
That reflects a much more significant segment of the voting population than 23,000!!!!!!!!
It's also that much more reason we need to make a good showing. Pallone needs to realize that it's NOT only effecting 23,000 people/yr AND SO DO ALL THE OTHER POLITICIANS!!!!!!!
I'll try to get back to do the homework on this, but I'm having a MASSIVE scatterbrain problem right now. I had to post my thoughts on this, just in case I get sidetracked because I have too much on my plate.
ON WITH THE FIGHT!!!!!! Ali
sorry for the bad-brain day/week/weeks
[ 30. April 2008, 07:04 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
its all in my head
and my organs....and mucles...and tissues...and Cns, etc...
you get the idea.
cheers
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
i love geneal's idea, and i'm adding my own thoughts to it for a different perspective! ---------------------------------------
It is our lives that are at stake.
While IDSA DRS. eats ONLY "STEAK"!
You can also bet; they will not come to our WAKE!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
MOST INFECTED VOTERS DON'T "L O O K" SICK !!!
CDC says: 23,000+ yearly REPORTED = 230,000+ INFECTIONS Senator Pallone WE NEED YOUR ATTENTION!!!!!
CDC says: 23,000+ yearly REPORTED = 230,000+ INFECTIONS Friends and Family - PLEASE REMEMBER SENATOR PALLONE'S LACK OF ATTENTION
CDC says: 23,000+ yearly REPORTED = 230,000+ INFECTED How many VOTERS have YOU REJECTED?!!!
ARE WE UPSET? YOU BET!!! Has no one you've known been infected yet? SCHEDULE THE LYME BILL!
LYME BILL - SCHEDULE THE HEARING SICK, ANGRY, DISCARDED AMERICANS DO VOTE!!!!!
HELP END THE SUFFERING SCHEDULE THE HEARING GIVE LYME YOUR TIME!!!!
LYME DISEASE NEEDS RESEARCH!!! SCHEDULE A HEARING NOW!!!! WE ALL NEED THE LYME BILL some might not know it yet
[ 01. May 2008, 08:59 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Support the Lyme Bill
Why is the IDSA Afraid of Research?
Posts: 2557 | From home | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
LYME DISEASE BACTERIA IS SYPHILIS' SMARTER COUSIN SUPPORT THE BILL FOR RESEARCH!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
pingpong,
How do your statements relate to getting the Lyme Bill on the agenda for a hearing?
I must be missing something.
Might it just make us all look like we're nuts if the average person doesn't happen to see the correlation. They'd have NO idea why we're out there protesting, with a bunch of signs like those. They'd think IDSA's right and people who believe that they have Chronic Lyme are just a bunch of lunatics.
I think it might be better to keep it easier for people, who may not be aware of the problems TBD sufferers face, to understand.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm re-thinking my participation in this protest.
If you're planning on showing up with signs of this nature,pingpong, I don't believe I would want my image associated with this in the media.
I find it disturbing & I think it may get MORE media coverage than signs that would more clearly state the messages, drawing attention away from them.
I think people might spend too much time trying to figure out the meaning behind those signs & not actually pay attention to what we're trying to accomplish.
That's just my take on the whole thing, but what do I know?
I wonder if this could be why there are only 30 people planning to attend the protest.
[ 06. May 2008, 03:46 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
ali, very thoughtful suggestions;
i agree; protest can be done without some really BAD suggestions above.
we don't want to lose why the protest is being made; WE WANT HR 741 ON THE HEALTH COMMITTEE'S AGENDA FOR A HEARING.... ***********************************
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