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» LymeNet Flash » Questions and Discussion » Activism » New Action Alert - June 10th onward - KEEP CALLING

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Author Topic: New Action Alert - June 10th onward - KEEP CALLING
BorreliaBrain
LymeNet Contributor
Member # 7603

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Hey everyone, I just wanted to put some recent dates out there so that people don't think the old action alert is over.

It's NOT over. I just now spoke with someone at Energy and Commerce and at Pallone's office.

The phone calls are working! They have someone assigned to research this matter, and they are talking about it right now in D.C.

The bill is NOT dead, by any means, and the phone calls are making quite an impact, so PLEASE, keep them coming. EVERYONE should call once a day, if possible. Just do it. Forward these instructions to friends and family too:

Here's the instructions:

1. Call Congressman Frank Pallone (NJ) 202-225-4671

(F) 202-225-9665

Chairman of the House Energy & Commerce Health Subcommittee

Sample Phone Blurb

I'm calling to ask Congressman Pallone to schedule the Lyme bill for a hearing today! He has made a grave mistake in siding with the IDSA which has been investigated.

The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. Mr. Pallone's job is to help patients. (leave your name, address, contact info)

2. Call the US House Health Subcommittee Staff 202-225-2927

Sample Phone Blurb

I'm calling to ask the Staff to ask Congressman Pallone to schedule the Lyme bill for a hearing today!

He has made a grave mistake in siding with the IDSA which has been investigated. The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice.

Mr. Pallone's job is to help patients. (leave your name, address, contact info)

3. Call the US Senate HELP Committee Staff (202) 224-5375
Sample Phone Blurb

I'm calling to ask the Staff to ask the HELP Committee Chair to schedule the Lyme bill for a hearing today!

Patients have been ignored. The IDSA members and their Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. (leave your name, address, contact info)

Note: Out of respect, we are not asking you to call the office of Senator Kennedy, Chair of the HELP Committee, at this time.


It IS making a difference, so please keep calling everyone.

Posts: 194 | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
ellenluba
LymeNet Contributor
Member # 1707

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Thanks for putting this out Borrelia brain.

THe Lyme Rights committee should be putting more out in the near future, I think. But this is really helpful to keep people on the case now.
Ellen

--------------------


Posts: 819 | From New York, NY | Registered: Oct 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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adding on IMPORTANT info i've gotten in the last 5-6 days and have been doing too!
*************************************

bettyg
posted 06-06-2008 05:49 PM
-------------------------------
i just made my 3 phone calls and HIT PAY DIRT!!!


the 3rd phone no. is where i've been able to find out extra info, and she informed me someone is working on our lyme bills, etc. and PROS/CONS are both calling her.


i asked her if i could email some FACTUAL LYME DISEASE INFO to whoever is working on our bills?


she said that was NOT possible; confidential, BUT she offered hers to me !!!!
*********************************
[email protected]
*************************************


this is what i sent her and copied: PAT SMITH, LDA PRES., and activist Lucy Barnes aka tincup !!


she said she will print out whatever i send her to give to the person assigned to our lyme bill!!
*************************************************


Things I'm sending now are:
*********************************

1. my 2 LDA brochures typed together...lyme and co-infections plus much more to it; 9 pages!


2. I just noticed this on the LDA site, a new handy dandy tool for folks to use... (of course that is when I get done playing with it).


It is a printable map that shows the total number of reported cases of Lyme per year in each state... and the total number of cases over-all for each state.

Thought it might be of help to those doing research, reports, support group meetings, etc.

http://www.lymediseaseassociation.org/Maps/index.html


3. 1980-2008 Jan...CUMULATIVE!
To see your states figures....

http://www.lyme.org/resources/1980-cumulative.htm

Once again Pennsylvania and Maryland are topping the list with the most reported cases of Lyme disease so far this year, with California coming in third. And it's still JANUARY!


In mid-December 2007, the Maryland DHMH reported to legislators that they had over 1,000 new cases they hadn't completed or counted. However, the total for Maryland in 2007 did NOT reflect those extra 1,000 cases. Where did they go?


13 states have already reported cases this year... in JANUARY.... and many are cold weather states.

Colorado, which usually only reports a couple of cases per year, if any, already has one on record.


DC dropped from 62 to 13 cases in one year 06-07. Was one of the 13 cases President Bush's case?


Connecticut dropped again (2006-07)- no doubt due to their new fangled, high dollar reporting system that still isn't working properly.


Florida already has several cases reported so far this year, which is unusual.


Guam, Puerto Rico, South Dakota and Oklahoma were the only ones reporting NO CASES LAST YEAR.


Since reporting began in 1980 we have increased from 120 cases a year to over 20,000 cases per year, nationwide. These figures represent ONLY the reported cases.


According to the CDC, for a more accurate figure multiple the numbers by 10. That will provide you with the CDC 10-fold assessment totals and will show what they believe to be closer to the actual number of cases occurring.

And note: 75-90 percent of people with Lyme are being missed using the current standard tests, according to Hopkins and ILADS studies.

These people have little chance of ever being counted, much less diagnosed and/or treated properly, which can result in hundreds of thousands developing late stage Lyme and possibly becoming disabled or worse in the next few years.


Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only! So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda


4. ILADS 2005 LYME TREATMENT GUIDELINES

http://www.ilads.org/burrascano_0905.html

International Lyme and Associated Diseases Society, ILADS
September 2005

Articles and Presentations
DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES
Joseph J Burrascano, Jr., M.D.


5. 36,584 have signed to date opposing the IDSA 06 revised treatment guidelines!!!

http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1


6. Betty's LYME VIDEOS COMPILED HERE....

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=019781


please watch these 2 specifically:
***************************************
..
http://www.youtube.com/watch?v=W40ZI1nSpX0
4.44 length
story about Alex Hermstad, 14, Iowa, paralyzed and on ventilator slowly dying from Bartonnella and other UNKNOWN DISEASES; her daily life being assisted 24/7.

Under our Skin:

http://www.youtube.com/watch?v=sxWgS0XLVqw
5 min. 25 sec.

Lyme disease documentary trailer. A VERY good trailer!!!

Excerpt #1 - Patients Abandoned:
http://youtube.com/watch?v=WuzPJ_C4Ijs

Excerpt #2 - The Perfect Storm of Diseases: http://youtube.com/watch?v=cwVj_IKP8mY

Excerpt #3 - The Price of Misdiagnosis:
http://youtube.com/watch?v=W-nJDHVD8QQ

Excerpt #4 - Physicians Under Attack: http://youtube.com/watch?v=X_jwFVkXWtc

Excerpt #5 - Lyme Journey:
http://youtube.com/watch?v=WMuVy78fdC8

*****************
And if you have friends or family in MD, VA, and DC area, send them to see this Lyme disease documentary. UNDER OUR SKIN, will be showing at the SilverDocs Film Festival in Silver Spring, Maryland, from June 17-23.


The complete documentary is available by DVD NOW:

www.underourskin.com/dvd

It is $35, plus appr. $6 for shipping...
********************************************

Kathy, at this time, this is what I can think of to send your staff person working on our lyme bills!

Pat and/or Lucy, etc. MAY send you more good evidence, statistics, etc!

Betty G, Iowa activist


[/B] Pat, Lucy, etc.

If any of you send them things, PLEASE SHOWN THE SPECIFIC THINGS IN THIS POST; this way we will NOT DUPLICATE mailings to them. We want this to HELP OUR LYME BILLS get on agenda!! [/b]

Thanks everyone!
+++++++++++++++++++++++++++++


BorreliaBrain
Frequent Contributor
Member # 7603
posted 07-06-2008 03:39 PM
-------------------------------

Ok, I sent a quick note to that email address and gave her the youtube link for the new video

http://www.youtube.com/watch?v=oYtrHoGVlo4
*********************************************

and just asked them to please have the Congressman watch the video as the comments were directed to him. I hope this gets seen - hope it helps.

BB
Posts: 167 | Registered: Jul 2005
+++++++++++++++++++++++++++++++++++++++++


bettyg
Frequent Contributor
Member # 6147
posted 08-06-2008 02:13 AM
--------------

BB, thank you so much for sending them this link that you created and YOU TAPED AT THE PROTEST. WELL DONE MY FRIEND!!!
************************************


bettyg
Frequent Contributor
Member # 6147
posted 09-06-2008 02:35 PM
------------------------------
... i just made my daily 3 phone calls; here's additional info i was told, if anything!


1st no.
i asked if they had seen the YOU TUBE 4.5 MINUTE "PALLONE PROTEST WITH INTERVIEWS" emailed over the weekend. ***************************


this man did NOT know; i asked him to ask him co-workers as i would be calling daily and will ask him again about this.

getting many phone calls; "PALLONE IS AWARE OF THE ISSUES AND HAS "NOT" DECIDED WHAT TO DO YET!"
*******************************


2nd phone no. .... many callls being received.

i asked her if they have an email we can send INFORMATION TO; yes!


WWW.ENERGYCOMMERCE.HOUSE.GOV
*******************************

look for CONTACT US ~~~
*******************

she said there was OPINIONS ALSO!!
**********************************

i have NOT checked this out yet! will later.
*******************************


3rd no. ... got different gal than before; she stated they have someone diligently working on it.

i asked her if INTERN 10 received my email over the weekend with info. "she thought so".
I ASKED THAT SHE SPECIFICALLY FIND OUT; i want to make sure they are going to right address.

so i repeated the address; it's correct!!

[email protected]
*********************************
*********************************

she logged my zip code and state!
told her i'd be calling daily....
+++++++++++++++++++++++++++++++++++++++


bettyg
Frequent Contributor
Member # 6147
posted 10-06-2008 04:28


...HOORAY!! PAY DIRT AGAIN!!!

i just made my daily 3 calls!


1st no. took name/full address;
i asked if he was getting as many idsa calls AGAINST our lyme bill; HE HEARS MORE FROM LYME PATIENTS!!
but added there are other staff who take phone calls too!


2nd no. ..i gave my name/city/state; I'LL LOG YOUR CALL!


3rd call...THIS IS WHERE WE ARE MAKING PROGRESS!
************************************************


i got a new woman today; so asked for KATHY who i talked to last week who gave me her EMAIL which i posted above.


new gal transferred me to MEGAN, who i talked to yesterday who remembered me and stating, you will be calling daily!


i asked megan if she asked KATHY if she had received my weekend email with videos on it.


YES, KATHY DID! KATHY SHOWED THEM TO "STAFF PERSON WHO WATCHED THE YOU TUBE VIDEOS I SENT!"!!! *****************************


i told megan SHE made my day knowing this staff person assigned our lyme bill HAS ACTUALLY WATCHED them! i so hope no one was lying!

how about that? [Big Grin] [bow] [bonk]

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radfaraf
LymeNet Contributor
Member # 11909

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Any good links to send to friends with an explanation to encourage them to help?
Posts: 526 | From NJ | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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..i made my daily calls!

no. 1 ... heard me say my name, and i'll log your call....

i asked the young man for pallone's email address where we could send him things. i asked if PALLONE HAD SEEN THE 2 YOU TUBE VIDEOS OF PROTEST AT HIS OFFICE AND PATIENT INTERVIEWS OUTSIDE HIS NJ OFFICE.


he didn't know, but said for us to go to pallone's home page:

http://www.house.gov/pallone/contact.shtml

************************************************

i told him i would send him the 2 pallone protest you tubes there. YES, that would be ok sending the DIRECT LINKS vs. attaching thing!!

EDITED: HE ACCEPTS EMAILS ONLY FROM HIS NJ CONSTITUENTS....PLEASE SEND HIM THE 2 PALLONE PROTEST YOU TUBE VIDEOS....thanks!!! xox


Lyme Disease Patients Protest at Rep. Pallone's office Part1

http://www.youtube.com/watch?v=QEn4WZIeJGk
(4 minutes)

Lyme Rights Protest, Long Branch NJ. May 7, 2008
Opening speech by rally organizer, lots of patients, signs and cheering!


Lyme Disease Patients Protest at Rep. Pallone's office Part2

http://www.youtube.com/watch?v=s2EGXg2lMxo
(7 minutes)

"We're talking a massive coverup of our epidemic."
Opening speech from LDA President Pat Smith.
Lyme Rights Protest, Long Branch NJ. May 7, 2008

*********************

no. 2 ... she took my name/full address.


no. 3 ... the office i love! today, i got a newbie, SARAH, answering the phones for 1st time on our LLMD bill!!

she told me they've received lots of phone calls on this..

since she was knew i gave her my brief story and talked about health insurances NOT paying for our appts/treatments, etc., and our having to travel out of state for llmds.

i could hear in her voice how SHOCKED she was hearing this.

i did tell her it meant the world to me yesterday that the person i talked to had played the YOU TUBE VIDEOS I SENT OVER THE WEEKEND.


told her their staff needs to see this and learn BOTH AREAS .... the patients with chronic lyme and infectious drs. who deny that CHRONIC LYMIES EXIST AND TREAT UNDER 30 DAYS creating long-term chronic lymies! her phone rang and i let her go.

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Dancer
LymeNet Contributor
Member # 11039

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Thanks for the push! I made my calls today!

When I called the Senate HELP committee, and got transferred to Health, the guy said the staff is working very diligently on it and he believes "there's alot of resistance from the Republicans". I tried to press on that one but didn't get anything more.

???

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bettyg
Unregistered


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i made my 3 calls;


pallone's office woman said she's been taking MORE LYME PATIENT CALLS than the other!!! HOORAY FOR OUR SIDE!
***********************


2nd no. ...she couldn't wait to hang up.


3rd no./ kennedy's ... took my zip code.
asked if they were getting many calls; YES, it's ONE WAY...

THE CHRONIC LYME PATIENTS WAY!!!! hooray!
******************************************

i told him too i was sending intern kathy emails with info as well for their designated staff person!

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