posted
NEW Link here to Contact Your Senator Congressman President Take Action on LYME Now
This campaign is targeting your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.
* New Date * - Ends December 31 2010
your action will be sent out to most important people for this matter through the web site
you may start your own action or take action in the one i started on Lyme Disease Epidemic
This campaign is targeting your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.
then just press the Send Letter button
Easy and Quick
Best regards, Eric
[ 04-15-2009, 12:07 AM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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bettyg
Unregistered
posted
eric,
mine went thru with MY letter!
however, it went to my STATE'S SENATOR/HOUSE REP !!
not sure if it went to my FEDERAL HOUSE REP WHICH IS THE PERSON WE WANT PLUS SENATORS IN DC !!
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On behalf of President Bush, thank you for your correspondence. We appreciate hearing your views and welcome your suggestions. Due to the large volume of e-mail received, the White House cannot respond to every message. Thank you again for taking the time to write.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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bettyg
Unregistered
posted
eric,
i got this today from ANOTHER DIFFERENT person ... we are MAKING HEAD WAY!
Dear Betty,
We wanted to tell you about a new feature on Change.gov which lets you bring your ideas directly to the President.
It's called the Citizen's Briefing Book, and it's an online forum where you can share your ideas, and rate or offer comments on the ideas of others. **********************************
The best-rated ones will rise to the top, ****************************************
and after the Inauguration, we'll print them out and gather them into a binder like the ones the President receives every day from experts and advisors.
If you participate, your idea could be included in the Citizen's Briefing Book to be delivered to President Obama.
Visit the Citizen's Briefing Book now and share your ideas:
Throughout this Transition, a truly inspiring number of citizens have gotten involved. We hope that you remain involved through the Inauguration and beyond. *********************************
i went to the web original web site, and have revised my letter, asking for the treatments for the coinfections, the need for llmds, as well as funding and bills to be passed.
i just hope that now more people would actually all participate in this very urgent and timely matter.
heres the actual link to their web site of this thread to take action in...
I was diagnosed with Lyme Disease 15 years ago in the state of NJ. The doctor who finally diagnosed me said I had it for at least two years. Meaning, I have chronic Lyme.
I've since moved to upstate N.Y. Two years ago, I started to have a serious relapse, I went to Strong Memorial Hospital, where they drew my blood, and gave me some antibiodic pills. A week later, while getting ready to go to work, I fell straight to the ground. My wife took me to the hospital where they lost my previous bloodwork. I told them I had a history of Lyme Disease and felt I was having a relapse.
The doctors ignored me, and redrew my blood for more bloodwork. I explained to them how they'll get a false negative since I've been on antibiodics for a week already. I showed them all the info on the disease, even referred them to a book my aunt wrote on the subject which is held highly by the acedemic community on info for Lyme. They continued to treat me like a hypochondriac, not even bothering to get my medical info from the hospital I was in for a month.
At the time I was in the hospital, if I had gotten the I.V. antibiodics I needed, I would not be confined to a wheelchair as I am now. The C.D.C. guidlines for treating Lyme is based on symptoms and whether or not the patient has had, or was in an area with a known infestation of Lyme. Again, they ignored me.
Even after I finally got a retest of my bloodwork, which showed I had positive anitbodies for Lyme, my doctor just told me it means I built an immunity. Again, ignored me when I explained to him you can't build an immunity to Lyme, hence the reason you can get reinfected, and even if that were true, then I would be a medical miracle whose blood could provide a cure.
I have been fighting to get treated, so I can get better. As it stands now, I am in a wheelchair, my left arm has started to get weak and numb from time to time, joint pain, I am fatigued, experiencing brain fog (which is really hard for me to handle since I am very smart, and used to have a mind like a steel trap, now I have trouble putting sentences together when I speak), , unable to comprehend large blocks of texts , migrains, I have literally been falling asleep at the drop of a hat (more than once almost fell out of my chair while my wife was talking to me), I had to quit school (I was going to school for pastoral ministry, am currently trying to finish up online, but struggling with money to pay for it now, and having trouble comprehending), and been experienceing mood swings.
My life has gone downhill the past three years, and the only thing that is keeping me from getting some semblence back is the proper treatment. I still may never be able to walk again, (the longer I stay this way, the lower my chances get) since I didn't get the treatment I needed when I needed it, but at least I can get my energy and brain function back.
This is all because the medical system is ruled by money and not the patient. There are people suffering worse than me, children, but because insurance companies refuse to acknowldege it doctors don't diagnose it. Those who do get ostrasized, black balled, and persecuted. For nothing more than trying to make peoples health better, and having the courage to stand up and say, "No, I don't care what the bean counters say, this person is sick, and this treatment is making them better."
Some doctors say long term antibiodics can possibly be detrimental to your health, yet we treat cancer with chemo, which is basically a poison. Why? Because the benefits outweigh the cost. Same thing with lyme. So what I'm asking is for the government to basically step in and fix this problem before it gets worse, and God forbid someone, or some child, dies and it gets out how it could have been prevented.
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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Though this is different than original Action there for Lyme Disease Epidemic, which I had started a few days ago,
This campaign is targeting your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.
on this one you can leave a long post, leave comments and vote!!! Robin62 (I'm moving this comment from another thread as suggested by bettyg)
Posts: 861 | From USA | Registered: Dec 2008
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posted
Just made a request in the citizens briefing book for a Lyme disease/coinfections public awareness campaign. I put it in the Education category.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin, i just came frfom that site, and i did NOT see anything from you!
also noticed ALL OUR VOTES BEING TAKEN AWAY BY SHOWING "DOWN" VS. UP !!!
so i sent en email to transition team about that. I ENCOURAGE others to use the contact click and do the same!
all our hard work is going down the drain due to our ENEMIES of chronic lyme and we can only guess who that is right?
quote:Originally posted by bettyg: robin, i just came frfom that site, and i did NOT see anything from you!
also noticed ALL OUR VOTES BEING TAKEN AWAY BY SHOWING "DOWN" VS. UP !!!
so i sent en email to transition team about that. I ENCOURAGE others to use the contact click and do the same!
all our hard work is going down the drain due to our ENEMIES of chronic lyme and we can only guess who that is right?
without naming names!
I'm confused. Where are you all linking to? Did I post this in the wrong place? I wrote a discussion (different sign in than I use here, which I will keep private) and there are comments to mine and it has points. What is getting voted down? I see on post being voted down that has a list of symptoms. ??? Robin62
Posts: 861 | From USA | Registered: Dec 2008
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quote:Originally posted by bettyg: robin, i just came frfom that site, and i did NOT see anything from you!
also noticed ALL OUR VOTES BEING TAKEN AWAY BY SHOWING "DOWN" VS. UP !!!
so i sent en email to transition team about that. I ENCOURAGE others to use the contact click and do the same!
all our hard work is going down the drain due to our ENEMIES of chronic lyme and we can only guess who that is right?
without naming names!
I'm confused. Where are you all linking to? Did I post this in the wrong place? I wrote a discussion (different sign in than I use here, which I will keep private) and there are comments to mine and it has points. What is getting voted down? I see on post being voted down that has a list of symptoms. ??? Robin62
I see now that post does not show votes down.. was it resubmitted? Or just not showing votes down. When I viewed it yesterday, it clearly showed votes up and down. Today, it looks like it was either resubmitted or votes were cleared. Robin62
Posts: 861 | From USA | Registered: Dec 2008
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bettyg
Unregistered
posted
robin, here's direct link to fill in CONTACT INFO to send to obama's transition team.
eric, please show something in your subject headings that VOTING IS OVER on ALL POSTS dealing with this subject!
i just got this from obama's transition team HQ: ******************************************
Change.org presents Obama Transition Team with its Ideas for Change in America
There are four days until the Inauguration, and the country is alight with excitement, not just about the arrival of Barack Obama in the White House but also for the beginning of a new era of civic engagement.
We've tapped into this energy with our Ideas for Change in America, and today we held a press event at the National Press Club in Washington DC to announce the winners of the competition. ********************************************
The 10 winning ideas reflect the diverse interests of the millions of people calling for change across the country,
and include ideas for
securing universal heath care, LGBT rights, and sustainable green energy.
All winning ideas can be viewed at ***********************************
The winning ideas were accepted on behalf of the Presidential Transition Team by Macon Phillips, the Director of New Media and the person who oversees our second-favorite website, Change.gov.
Macon then addressed the attendees of the event, which included nonprofit leaders and grassroots activists, and spoke about the importance the administration will place on citizen-driven efforts like Ideas for Change.
With almost 8,000 ideas, more than 600,000 votes, and more than 175,000 participants,
the Ideas for Change initiative has shown the widespread interest across the country in renewed civic participation and direct engagement in policymaking.
And this is just the beginning.
Starting next week, each winning idea will be paired up with a sponsoring nonprofit, which will begin a national campaign to translate each into actual policy.
We'll be documenting the process here at Change.org, so look out for more from us soon.
As the nation gears up for next week's inauguration -- and a potentially record turnout to watch it unfold in Washington -- our bloggers are busy assessing George Bush's legacy, anticipating Barack Obama's future, and reacting to the actions of a swiftly moving Congress:
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posted
REcreation use of Marijuana beat Lyme in the poll? That's ridiculous!
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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-------------------- 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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Please contact both your state Senators to support S.1352
We need more accurate testing to help people which is one of the goals of this bill. Just go to: http://www.cwork.com click on your state and your Senate Reps name and phone numbers will be there. Please help and ask your Senator to co-sponsor S.1352.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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