posted
I know this belongs in Activism but it is so important, I hope no one minds I posted it here.
Senator Blumenthal wants to hear your Lyme Story, he has set up a page on his web site....it is only available until Thur. Sept.13th. Get your story and difficulties with Lyme in the Congressional Record and lets get counted. I submitted my story. You do not have to live in Connecticut it is for everyone with Lyme or if you have a family member with Lyme.
Click on this link to get to the online submission form
This is an opportunity to get counted and recognized and is only available for 3 days (until Thursday 9/13)
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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posted
Dick Blumenthal is an old friend of my dad's and a wonderful man and a passionate advocate for all of us with Lyme. Everyone please submit your story-I can personally attest to the fact that this is a great man with the best of intentions for all lyme sufferers!!! Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Curious, is there a danger in submitting all of that personal contact info to the government in this case?
Posts: 274 | From United States | Registered: Feb 2012
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posted
Possibly, but he wants to get a count on just how big this Lyme problem is and I am willing to take the chance....he is trying to get Congress to enact laws to protect doctors treating Lyme and get funds for research and better tests to diagnose.... all the things we need.
The window of opportunity closes on Thursday the 13th.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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posted
I agree that Blumenthal has done wonderful things for Lyme advocacy. I tend to be very trusting with my info, but have learned (from this board) to be more cautious. I guess I just wondered if anyone had any red flags.
Posts: 274 | From United States | Registered: Feb 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Does anyone know, how will this information be used? I want to help but it does make me a little nervous giving all my personal info.
Any thoughts? Are we safe to do this? Any ins ramifications? Anything like that?
Posts: 5237 | From here | Registered: Nov 2007
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posted
I understand your hesitancy to release information to the Govt....I don't trust them as to how it will be used but I have been so sick for so long that at this point in the disease I have nothing to lose.
Sen Blumenthal need numbers, those in power still do not believe Lyme is a big deal and almost non existent in the southern US..
He needs stories from real people with Lyme to show the Senate it is worthy of bringing a bill to the floor of the Senate.
His am is to get legislation to protect doctors treating Lyme, to have doctors informed about lyme, money for research, better testing and better treatments....All the things we want. He had been very active in his home state of Connecticut before he came to the US Senate and even took on the Insurance Companies in Ct. and the IDSA
Senator Blumenthal is a member of the U.S. Senate Committee on Health, Education, Labor.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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posted
I just sent my story in. G-d bless Sen. Blumenthal!
Posts: 873 | From WA | Registered: Dec 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks. Just wrote my note, too. I said they could use the details, just not my name.
You have to check a box before they can use your name.
I don't see how this will help someone 3,000 miles away, though. Other than if the east coast gets with it and then, in the next century, my state may consider following.
I do hope he incorporates replies from all the states, though.
Otherwise, my details may help somewhat to validate others who report similar experiences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymeboy
Unregistered
posted
I'm sweating a bit about leaving my name and address. But I really wanted to help make a difference.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I trusted him with my name and address but not the authority to publish my name (I just prefer my privacy to be in my own control and I shared some very private feelings about my reality at this time).
I don't see how our addresses for this could possibly get away from his own use.
I think the (private or public) name and (private sharing of) full street address are required for this to be taken seriously and to verify truth in our statements, if that ever needs to be traced.
In any lists or excerpts for committee use, they usually just note the city. -
[ 09-13-2012, 07:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I would suggest to email him or his office the link to this website and read the 800K posts over the years - that should answer any questions on how widespread this nightmare is.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I submitted my story too. A little nervous about it, but it is done. Senator Blumental and Congressman Chris Gibson from NY are definitely trying to make a difference for us. I am so grateful for politicians like them.
Posts: 2386 | From New England | Registered: Aug 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I sent my story.
Posts: 5237 | From here | Registered: Nov 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Sent mine. So what if they have my name! My insurance company has a list of my meds- not hard to figure out what I have! Really, the only way to make a difference is thru publicity and numbers!
If the public hears first hand how devastating Lyme is, and how easy it is to catch- change *may* come
Research for AIDS took off once the virus was found to infect the blood supply. I am sure Lyme will be next
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I sent mine too. It took 2 hours to write down the story. But, it's done. Hope it will help!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I sent a two page account of MY family story late last night!
NEWS FLASH - THE COMMENT LINK IS STILL OPEN TODAY! IF YOU HAVE NOT SUBMITTED YOUR COMMENT TO THE CONGRESSIONAL RECORD - THERE IS STILL TIME!
As far as privacy concerns? Hell, we should be MORE worried that our government continues to do NOTHING about this epidemic! And that the arrogant and misinformed members of the IDSA treatment recommendation committee are allowed to DENY us EFFECTIVE TREATMENT!
My personal conundrum? Whether to check off the box allowing them to "share" my family's ugly and pitiful tale. In a late night decision - I voted YES!
People need to understand that THEY could be the next victims of this medical and legal plague!
Please - if you haven't submitted your Lyme saga to Senator Blumenthal's site, do so today!
Have you lost a career, a marriage, a home, your mobility, or your mind to Lyme disease? Senator Blumenthal thinks you have a "powerful story to tell!"
Every story is an IED detonated beneath those who would profit by our suffering! Donate your ammunition to the good Senator, and declare your allegiance to this cause!
May God bless, and direct the paths, of those who would help the helpless!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So that I could ask more specifically that he address the organizations' recent action, I wish I had seen this before sending my note.
Just this summer, see the list of medical organizations that have decided that chronic lyme does not exist and that on-going treatment is not warranted.
Not posting to contest the content (we know what's real, after all) but we have to know their position on this in order to make our way in this world.
I just stumbled upon this "blog of concern" (how else can I describe this?). This doctor is so against the idea of lyme but today, from a medical journal this summer -
we do need to be aware of this and this is the only link I've found that has more of an excerpt than availabale at other sites.
. . . Some persons have advocated use of the term chronic Lyme disease (Table 5) to describe the persistence of nonspecific signs and symptoms in patients with or without clinical or laboratory evidence of Lyme disease.
These advocates suggest that patients with the so-called post�Lyme disease syndrome (category 4) or antibiotic-refractory arthritis have a latent intracellular infection that may require months to years of antibiotic therapy for eradication. . . .
. . . Although controversy exists regarding post�Lyme disease syndrome and chronic Lyme disease treatment, four randomized clinical trials found no evidence that prolonged antibiotic therapy is of benefit.
Therefore, the
1) American Academy of Pediatrics,
2) American Academy of Neurology,
3) American College of Rheumatology, and
4) IDSA
do not recommend prolonged antibiotic therapy.
A recent survey concluded that 97 percent of primary care physicians in Lyme disease�endemic areas did not diagnose or treat patients for chronic Lyme disease.
You can search site with title for the article abstract but full article access restricted to members only.
We might consider calling out these four organizations as we call for the truth to emerge. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
You can simply write that you have ongoing symptoms and how they impacted your life..I didn't mention if I was on abx-only the trouble I had getting diagnosed and how it impacted my life
We need to band together-there is power in numbers. It's easy to refute a few individuals=
thousands of lyme patients is another story
Posts: 1276 | From maryland | Registered: Jan 2009
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Keebler - So what?
Blumenthal knows full well there are plenty of Lyme naysayers, most of whom have "conflict of interest issues" with public health!
In a law review article of Blumenthal's "anti-trust" litigation, it was noted that Dr. B had testified before Congress that many of the IDSA treatment committee members were "on the take" from The Amercian Arthritis Association!
And one of our members on this board, said he had TWO joint replacement surgeries, before he learned he had LYME!
He also said there were several orthopedic docs just in his one town in CT, who were "making money hand over fist" with these surgeries. Talk about "conflict of interest!"
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I posted that as a matter of information that - still - this summer - these four major medical organizations take this stance.
It's just as a helpful note that we might use in our communication to point out their continued actions against lyme.
Just keeping current on the situation. Not contesting the content (we know the truth) - but the timing - the ongoing and current push against those with lyme.
We need to know the current events. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
So submit it. The comments window is still open!
But I might add the caveat that this is the kind of prejudicial and erroneous "professional" misinformation that Lyme patients are up against!
Otherwise, I think you may just be adding fuel to the opponent's fire.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Adding fuel to their fire"?
How would OUR not knowing this & not being aware of this serve us? How would not sharing this update here with lyme patients help us? It would just keep us in the dark.
We need to know what their official stance is and the current date really matters. This is not from a year or two ago, but now. Their latest word.
We need to know this. Not planning on adding fuel to any fire. It's just about keeping up on current events. - illustrating the continued & current ignorance about lyme in the medical groups. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
"Hundreds of pages" ... this is excellent news!
Thanks for posting this press release abby-do!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yay! This is great news!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Good for us!!!! We are on our way to being recognized and receiving the help we deserve.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Good for us!!!! We are on our way to being recognized and receiving the help we deserve.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Good for us!!!! We are on our way to being recognized and receiving the help we deserve.
Posts: 620 | From Ks | Registered: Oct 2011
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Hundreds of pages, that's awesome......would not have happened if lyme patients were quiet in fear for their privacy.
I saw many people Tweeting this and posting this on Facebook. The emergence of social networking among chronically ill lyme patients will be a powerful tool in changing the IDSA's view on this illness.
There will be more vocalization, communication and organization of lyme patients
Not trying to start a debate on whether you should be vocal about your illness or not. It's just further proof that the whole idea of keeping quiet is no longer working.
Hooray for Dick!
Keebler, that's a blog that you posted and I can't find any credentials(besides one is an MD) on any of the authors of any of those articles. They are probably fake and definitely meant to be inflammatory. My 7 year old nephew has a blog about his autism, it doesn't mean anyone should base there actions on what he says.
posted
Is that equal to thousands of patients? I wrote a few paragraphs. I hate being negative, but I expected it would be THOUSANDS of pages! But if it helps us get what we need, then I am happy.
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Lymeboy - Hard to say how many "hundreds of pages" they got ... but figure this - most folks probably wrote two pages or less. So there's a minimum of 50 people per hundred.
GREAT WORK ALL!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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