NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I'm posting links to the most frequented Democratic sites/blogs on the net.
You can write a post about how Pallone is holding up our lyme bill {HR741}. Once completed, make sure to e-mail the link to the blog post - directly to Pallone's e-mail at the Energy & Commerce Committee.
If you look at Daily Kos's home page, there's a huge list of Democratic Blog sites you can register at and post about Pallone.
Once your post is up you can send the link to the Energy & Commerce e-mail.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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bettyg
Unregistered
posted
up for me to work on when my brain is functioning!
i plan on posting on your boz post and including ALEX'S you tube video and a few others...
up for morning crowd!!
REVELRY...is that CHARGE or retreat? i always get things confused ... neuro lyme! uffda
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bettyg
Unregistered
posted
i just posted this on boz........
FRANK PALLONE IS HOLDING "CHRONIC LYME" PATIENTS HOSTAGE!
For 10.5 long years, chronic lyme patients have had their LYME BILL in congress, and NOTHING to date has been done or acted on!
We have been very patient to date awaiting our turn; but congress doesn't work that way we have recently found out.
We don't have money to pay LOBBYISTS to BUY VOTES from house reps/senators!
So now we are going to become very vocal, and since it's an ELECTION year; you're going to see and hear us everywhere!
NP40 gave you some very insightful comments and 2 links for you to become educated in our CHRONIC LYME WORLD, which we'd rather not be a part of. But the ticks that bite us took those opportunities away from hundreds of thousands of us!
NP40 stated, "Lyme disease and tick-borne co-infections can be extremely debilitating and painful.
Patients can experience major organ complications/failure, paralysis, dementia and occasionally death".
The National Lyme Disease Memorial Park Project is dedicated to all who have experienced the ramifications of Lyme and other tickborne associated diseases.
There have been far too many lyme deaths since they were not correctly and promptly diagnosed and worse yet; the UNDERTREATMENT of lyme by not giving antibiotics long enough to kill the spirochetes that have invaded every orifice of our body!
The below site has the obituaries of every known lyme patient that we are aware of, and added another one who just died yesterday!
There is a very special 14 yr. old girl, Alex Hermstad, from Storm Lake, Iowa, who was perfectly healthy one night going to bed; the next day she couldn't move!
She has been paralzyed and on a ventilator not able to talk for 1.5 years now. She was recently diagnosed with Bartonnella, another tick-borne co-infection.
To date no doctor has been able to get her correctly diagnosed and TREATED correctly for everything that has gone wrong with her to get her on the road to REMISSION!
Alex's Mom, Lori, recently made this 4:44 minute you tube video about Alex.
Please watch this touching video, and ask any doctor friends/family, etc. to WATCH it too in case THEY ARE ABLE TO help Alex/family!! Please create a miracle for Alex/family.
In NP40's post, he gave you the link to listen to Lyme Disease Association President Pat Smith at Pallone's office on May 7, 2008 at their PEACEFUL lyme protest outside his office. Pat is speaking up for Alex and those below in the you tubes noted!!
Under Our Skin documentary preview, 5 minutes long, by Andy Wilson and the finished version premiered last week in NYC !!
Frank Pallone and his complete health sub-committee should be ashamed of themselves for meeting with the IDSA, infectious drs., their lawyers/etc., on May 2, 2008.
They discussed Conn. Attorney General Dick Blumenthal's recent May 1, 2008, decision of their 20-month investigation of ANTI-TRUST VIOLATIONS of IDSA'S 2006 LYME TREATMENT GUIDELINES.
The IDSA was found guilty of many CONFLICTS OF INTEREST; please refer back to NP40's post where he posted the link of the AG's decision/findings!
Then Pallone sat on what IDSA/Pallone and his sub-committee decided May 2 to wait until AFTER their is a NEW committee established to review the 06 guidelines in violation to see what things are agreed upon to change, delete, etc.
They decided this action May 2; but it was at our May 7th scheduled lyme protest that Pallone's NJ staff member announced it to the PRESS that our lyme bill would NOT BE HEARD until after new panel was created and findings determined.
Pallone was TOO CHICKEN to present this himself to the press that day, and gutless to face the music .... telling the over 100 chronic lyme patients who traveled from 4 states to attend in wheelchairs and getting antibiotic IVs attached!
This was thoughtless and irresponsible of Pallone to have waited until May 7th to announce this, and then would NOT give Pat Smith a copy of it while she was there in his NJ office !!
By announcing this promptly May 2, it would have saved these folks great harm to their physical limitations that we all go thru.
COMPLETELY UNACCEPTABLE FRANK!
Then we also learned that the medical community has given Pallone almost $500,000 in lobbyist money for his campaign.
Yep, his vote to listen to IDSA is quite apparent to us chronic lyme patients!! MONEY TALKS!
We don't have the money; we have to PAY OUT OF POCKET FOR OUR APPOINTMENTS, TREATMENTS, LAB WORK, X-RAYS, ETC.
Many of us have reputable health insurance companies but they follow the CDC rules, who follows IDSA and other organizations!
2 years ago I paid $5,000 out of pocket to go to a LLMD, LYME LITERATE MD, out of state plus $1,000 travel expenses since IOWA has NO FULL-TIME CHRONIC LYME LITERATE DRS!
In fact, 15-18 states nationwide do NOT have chronic LLMDS!!! So we are forced to go out of state ... OUT OF NETWORK!
Many of our doctors have OPTED OUT OF MEDICARE, meaning drs. office don't bill medicare. Thus we have NO denied bills from medicare, and then our health insurance companies refuse to reimburse us since NO MEDICARE DENIAL STATEMENTS OCCURRED! HOG WASH BIG TIME! PU !!!
Pallone, as I told your NJ staff woman yesterday, we are NOT asking for anything special ... we just WANT EQUAL TREATMENT LIKE CANCER, HIV/AIDS, and all other diseases!
West Nile Virus, which has very few cases, and BIRD FLU, have received enormous millions of $$ for them, but LYME disease receives a small pittance.
We also have military vets ... past and present with LYME disease who can NOT receive good treatment from a CHRONIC LLMD; the military requires ONLY IDSA treatment.
Remember, IDSA believes there is NO CHRONIC LYME AND TREATS FOR UNDER 30 DAYS, and bingo, you are cured! HOG WASH !!
So our veterans past and present again are being abandoned after their active service for ALL AMERICANS to protect this country and we, the people!
Pallone, please get off your butt and put our lyme bill HR 741 on your agenda THIS WEEK!
My Iowa House Rep Tom Latham, R, wrote you and Ranking Member Deal on May 12, " I respectfully urge that the Subcommittee on Health hold a hearing on the bill, and do everything necesary to move the bill forward in a timely way."
i sent to 1st link of pallone's committee, but mike's 2nd link shows committee members individually list; NOT A GROUP EMAIL ADDRESS so didn't do anything on that one!
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bettyg
Unregistered
posted
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mike .... help please; TALK LEFT SITE;
i signed up, activated it, but can't find out WHERE to go in order to post! i've studied it over and over ... no luck!
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