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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bettyg
Unregistered
posted
TC, you bet I do and my memory is as bad as my eye sight! Sorry; but got you all to check, didn't I? lol
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Tincup
Honored Contributor (10K+ posts)
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
13808
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
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posted
Looks like it is slowing down!
Can you email others to sign up? And re-mail those you already have sent it to... to see if they followed through.
Maybe type in your local city or county's name in a search engine and flip through sites and see what email addresses you can find. Then make it personal to them...
Example..
Dear State Park..
Since your employees are exposed to ticks.. and your doctors ability to treat Lyme disease has just been drastically restricted, please help those with Lyme disease make a difference and sign the petition here:
TC, could you add LDA special petition site name to your signature line until Nov. 30? I always have to go way up to find it, and I'm sure others do too ... a real timesaver! Thanks my ice cream friend!
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Tincup
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posted
BettyG..
Sorry... Not changing names this time. But...
We'll try to keep it closer to the top so you can find it easier.. ok?
posted
if everyone who has signed, got four others to do so, we'd break the bank in one week.
just to give some perspective.
or -- if 2000 people got 18 folks to sign ..
but i know there are more than 2000 folks working on this..
R I G H T ???!
i think everyone needs to put in time on this one.
ideas - circulate flyer with website to schools, get it to the teachers, if you have an in with any working group who will advocate for the petition - you can often generate lots of signitures.
bring it to college campus libraries, ask your church if you can get it in the bulletins - be creative.
put the link on other online groups, mailing lists, ect.
MAKE SURE your LLMD's office has good notice/flyers ready for patients in plain view. ask the receptionist if she would help remind patients of the action.
chiropractors and alternative medicine docs are clued in on the plight of Lyme patients - put it there.
ask your libraries if you can post the action and link near the internet station - the possibilities are endless.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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trueblue
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posted
14,417 as of just now.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
how can you see the total? I can't get beyond the signature page?
Edited two minutes later: NEVERMIND
Posts: 2903 | From AZ | Registered: Feb 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hey, if you do what I did, you can get to 50,000 easy.
I thought I had signed the petition, but with my Lyme brain, I thought maybe I hadn't. I figured if I signed again, the petition would just reject me. So I signed. And got thanked.
Still thinking I really HAD signed earlier, I decided to give it another go, just to see if it would now reject me. I signed. And got thanks.
That didn't exactly make me feel good, but there is no way to erase my signature. So now there is a good chance I signed 3 times.
The total number went up each time. It is a good petition and I am glad I signed it, but not three times!
This doesn't exactly increase my faith in this petition's accuracy.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
At final stage these kind of signatures may be removed together with others that contain errors are result of jokes, come clearly from children etc.
The total number will drop somehow, of course.
[ 16. November 2006, 09:24 AM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Another idea is to take flyers and a paper petition to all local Veterinarian's offices. At least THEY know about Lyme, so pet owners may be very sympathetic.
This may be a particularly good idea in places that are not clearly "endemic" ... like the SE, etc.
H
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
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posted
Yo HO Areneli ..
You seem so down on all the effots? Why aren't you a happy camper?
And hey.. good idea about putting them in vets offices!!!
posted
I am piping in a little late on this, but Melanie I hope you do not mind I sent out a copy of your letter without your name for your privacy to everyone in my address book.
Also I posted a Bulletin on My Space telling them about it all, and asked for people to sign the petition.
I hope My Friends ( I have 150) will pass it on to their Friends and on and on.
We do what we can. Blessings & light.
Yemaya Posts: 188 | From NM | Registered: Feb 2006
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bettyg
Unregistered
posted
TC, I took the petition printed out along with 2 sheets each to where I used to work TODAY; state agency. 1,000 on site! Hopefully I can get a couple of hundred before Nov. 30. I'll pick up 10 sites of petitions.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yem.. GREAT idea!!! And from your neck of the woods.. that will help a lot!
Thanks!!!
Now if the LDA site would stay up long enough we could type them all in on the petition... from the hard copy.. it would help!
Good going...
`````````````````````````````````````````````
Hey you.. little fireball.. BettyG.
You're burning them up.. ain't ya? Good work!!!
Let us hear back your final numbers! I need a smile!
And thanks!!
```````````````````````````````````````````````
How many?
After the site has been down all day.. we still have..
we can get the names and addresses offsite (you need name, email addy, address, and phone), and enter them when it is working, or send the info to your local LDA support group leader if the hacking of the website gets so bad you can't get on it intermittantly.
you can get more names working offline than on anyway, better responses i would think when it's phone or in person.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I made up paper petitions that are easy to print out and copy, just email me and I'll send it to you! [email protected]
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bettyg
Unregistered
posted
26 more till 16,000 !! *******************
TC, I'll be happy to tell you how many folks I end up signing up locally at the 13 places I've left the petition PLUS A COPY OF THE POINTS OF IDSA'S GUIDELINES so they can see why we are "ticked" off!
One place I dropped off my list was at a LOCAL NURSING HOME where I go to visit each Friday! Look at ALL the folks you could get there alone! So give the NURSING HOMES some thought too.
Yes, I'll not be able to go to the NY rally, but I've rallying now in IOWA to get these numbers UP UP UP ON BOTH PETITIONS and writing newspapers.
I did get emails off to IOWA'S FEDERAL/STATE SENATORS $ HOUSE OF REPS! Worked out all the bugs and my computer is finally cooperating with me. I had my own IDSA duck here...pc!
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Tincup
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posted
Good, good, good!!!
And more good, good, good!
Thanks BettyG and all!
I still need to type in some of mine. With site up and down.. haven't had a chance! Late now.. headed to BED!
I haven't had any trouble with this link, but I have the other one posted earlier in this thread.....
Somebody else please try it and see if it works.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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trueblue
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posted
The link works fine Tracy, thanks!
WC, I just emailed you, TIA!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
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posted
1 6 , 2 6 9 ... 2 more than TC's earlier post 1/2 hr. ago!
yes, we can't get those under 18 like the 10,000 kids Dr. Jones treated, but we can get the ELDERLY in nursing homes, etc. whose MINDS are still good!
Can't remember if I put in there too, I left one at our LOCAL SENIOR CITIZEN'S CENTER where they get 50 - 100 folks there daily for LUNCH!
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and in my family: NO cranberry sauce unless you have SIGNED!!
strike while the website pages are up!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
I just got done sending BOTH petitions to our local GARDEN CLUB PRESIDENT asking that she send it to those members locally as well as the STATE GC PRES. TO SEND TO "ALL" GARDEN CLUBS IN IOWA and also to the FEDERAL GC PRESIDENT to forward to all 50 states!
Also ask them to send to the MASTER GARDENERS TOO!
Do any of you belong to either a garden/master gardener's club? If yes, please send all this vital info to get the THOUSANDS GARDENING TO SIGN PETITIONS! Thanks lymies!
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Areneli
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posted
Did we cover forestry workers?
Perhaps somebody knows how to find them, as likely they are not on the Internet too often busy cutting trees.
Perhaps approaching trade unions may help. I think that 10% of these guys (Forestry workers) at least must have LD.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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bettyg
Unregistered
posted
1 6 4 4 1 , long ways to go!
arenelli, I sent you a PM on forestry workers!
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bettyg
Unregistered
posted
up for the newbies I discussed this with earlier this am...
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posted
How can people from oversease sign the petition (I have the petition website address)?
I have a friend here from Malta . He is originally from Illinois but has lived in Europe for many years.
Does he have to sign on from his own e-mail address or can I sign him on the petition if he gives me permission?
I may be able to get some more people signing if we can do this. Advise a.s.a.p. please. Thanks
Posts: 9020 | From Illinois | Registered: May 2006
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bettyg
Unregistered
posted
Hoping, my opinion is YES they can sign!
seems to me they show COUNTRY there also! so by all means, the MORE THE MERRIER! Boy, do we need numbers; little less than 34,000 !!
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posted
Just wanted to let everyone know I've contacted as many people that I know nationwide.
I asked that they sign the petition and pass on the request to all the people they can.
My cousin in California is very active in many organizations. She said she has three friends with "MASSSIVE" mailing lists. She was more than happy to help.
People have been very cooperative and understanding. We must fight the good fight!
"All that is necaessary for evil to triumph is that good people do NOTHING" Edmund Burke
Don't get discouraged - WE WILL WIN!!!!!!!!!!!!!! Posts: 9020 | From Illinois | Registered: May 2006
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bettyg
Unregistered
posted
1 7 , 6 6 2 YIPPEE; over 100 in 1 hr. earlier!! *******************************************
hoping and praying, WAY TO GO using your connections; and cousins 3 huge mailing lists!
were BOTH petition links on there I hope!! YES! you rock newbie!! ****************
Dated 11-13-2006; recd. 11-28-06
Dear Betty:
Thank you for contacting me with your support for expanding LYME DISEASE RESEARCH . I appreciate your sharing with me your personal story of how this disease has affected your life, and I hope that you are doing much better.
I appreciate your email regarding the (IDSA guidelines) testing for lyme disease. I am very sorry to hear that you had to go to Minnesota (out of state) for CHRONIC LYME DISEASE TREATMENT.
Since health insurance mandates are done by individual states, you may want to contact the Iowa Division of Insurance at 877-955-1212 or you may write to them at IOW INSURANCE DIVISION, 330 Maple St., Des Moines, IA 50319-0065.
I would also like to thank you for bringing to my attention the existence of the LYME DISEASE ASSOCIATION website. By educating more people about this disease, we are taking key steps toward improving the lives of those afflicted with Lyme disease.
In closing, I want to relay to you my strong feelings about representative government. For Democracy to function, there has to be two-way communication between Americans and their elected representatives.
By sharing views with me, Iowans play a vital role in this process. Hearing from you enables me to be a better US Senator, and I very much appreciate the time you took to inform me of your concerns.
Sincerely,
Charles E. Grassley US Senator CES/mm
NOTE: This was in response to the email I sent to ALL my elected federal officials in congress about the lyme disease petitions and the IDSA 06 lyme treatment guidelines that screw us ``chronic lymie'' patients! This was sent the weekend BEFORE Nov. 8 elections. So not bad for response time to me; better than normal!
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Tincup
Honored Contributor (10K+ posts)
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posted
Way to go Laurie and Hoping..
THANKS! That WILL help!!!
And I would like to share the fact that a lady I know (she is about 150 years old).. and a good friend of mine (or she WAS till I said THAT).. entered over 100 names tonight that were collected in Maryland. LOTS of work! It's hard to read those sheets.. and decipher them all.
I am happy she took time to do it with her busy schedule. But she is ALWAYS working hard for the cause behind the scenes. ALWAYS!!! I only wish I could do 1/2 of what she does.
tomorrow I will type in the 47 names I was able to get today from my former work place! Disappointed; 1,000 work there, and out of 5 offices getting copies of petition/sheet to sign, only got 9 fignatures PRIOR to my going door to door of former friends/co-workers!
2 didn't even post them anywhere after 1 week!
3 other businesses got none or LOST what I left them! This took me 4 long, hard hours on this body where I have to use a cain for my worn out hip.
Tincup, please give your friend who typed in 100 names on the ONE OR BOTH petitions this for me please! God bless you all!
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bettyg
Unregistered
posted
1 8 , 4 1 4 UP TO NOW! ************ **********
I just entered 62 names on LDA petition; tomorrow I'll add them to Lynne's also!
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bettyg
Unregistered
posted
up reminder; we've got monumental work to do to get to 50,000 !!
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