Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks to your help we are moving right along.
Now, let's pack up the babies and grab the old ladies and EVERYONE get fired up and go go go! We can't just sit by while the IDSA continues to walk all over us!
There are three key people who head the committees where the Lyme disease bills are stuck.
It's time for the BIG FLOOD of calls and faxes from you to help get them "unstuck" so they can be considered by Congress.
Very easy to do and it should only take 3 1/2 minutes of your time.
Just tell Senator Kennedy, Congressman Dingle and Pallone-
"Please schedule the Lyme Disease Bill for a hearing."
That's it!
``````````````````````````````````````````````
Here is their contact information:
Senator Edward M. Kennedy (D- MA)
Massachusetts Bill # S-1708
PHONE- 202-224-4543
FAX- 202-224-2417
``````````````````````````````````
Representative Frank Pallone, Jr. (D - 06)
New Jersey BILL # HR-741
PHONE- 202-225-4671
FAX- 202-225-9665
`````````````````````````````````
Representative John D. Dingell (D - 15)
Michigan- Chairman Energy and Commerce Committee
Bill # HR-741
PHONE- 202-225-4071
Fax- 202-226-0371
`````````````````````````````````````````` If you can get at least 10 others to make these contacts... we should rock the place and get our message across!
Please send this announcement to everyone you know in any state and ask them to help. The entire country can call, no matter where you live. Please do.
posted
Come on everyone, do your part!
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
YEAH Lymeloco!!!
I especially like THIS line the IDSA wrote in their letter to Congress...
"To this end, we believe it is critically important that the bill's sponsors and those Members of Congress who are considering sponsorship be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease,
as well as the medical community's concerns about unproven, potentially harmful treatments for so-called ``chronic'' Lyme disease that are advocated by a small, but vocal, group of physicians and their patients."
I think it is time we show them we are NOT just a small but vocal group!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is the Action Alert that was just sent out. My version is shorter and not as detailed.
````````````````````````````````````````````
URGENT! IMMEDIATE PRIORITY! April 17, 2008
Make Congress Count You, Not Just IDSA!
WHO
Everyone, everywhere concerned about Lyme disease and the cover-up of its seriousness.
WHAT
IDSA is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.
We have just heard that Energy & Commerce is making up a list of the only health bills to be heard NOW. If the Lyme bill does not make the list, it could be the end for this bill.
Don't let this happen! Take control of Lyme disease out of the hands of IDSA and put it where it belongs, in your hands.
WHEN
Take action TODAY April 17 & TOMORROW. (if you don't receive this in time, call anyway)
WHERE
The US House Energy and Commerce Committee & the Chair; House Health Subcommittee Chair
Clear phone or fax message example below (Simple is better)
(Polite but firm please) We want HR 741 on the House Health Subcommittee agenda today! We are sick (or friends, family) and Lyme is spreading.
We need help from you, now. We are not going to sit by and wait until our families and friends are all sick and dying from this devastating disease. (name, address, contact)
WHY
We have heard your efforts in calling Congress have been helping. They have generated a buzz in DC about the Lyme bill.
Two weeks ago, LDA was invited (by Senator Dodd) to brief the Senate HELP Committee in DC. Over half Senate HELP committee members showed up for the briefing, a good response.
LDA also set up a briefing of all House staff members in cooperation with the House Lyme Disease Caucus (Smith/Holden/Stupak).
The briefing itself went well, but hardly anyone from the specific House Energy & Commerce/Health Committee attended, although we have 103 co-sponsors on the bill in the House to date!
The Committee is not listening to its colleagues who support the bill, or to its constituents, or to all those who are sick.
posted
I just finished reading the letter from the IDSA to the US Senate against the passage of the Lyme disease bills.
I, frankly, and very saddened and disheartened. They know it is all a lie. I am so discouraged. Days like this it is hard to go on.
I would like these IDSA jerks to rot in Hell. I would like the senators to see my little boy limping in pain as he tries to get on the school bus and try to tell him his disease does not exist.
I called today, but am not confident it will be enough. We are not 8,000 MDs and the legislators will not believe we know more than the doctors. This makes me all so so sad. We are sick and they are strong.
Posts: 339 | From nowhere | Registered: May 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The children are why we keep going and going and going.
In my mind we have no other choice.
We need THOUSANDS of people to make a stink to finally get the truth out there to the ones who COULD help us IF they knew.
Don't give up Pinapple... we are going as hard as we can. If you can rattle any cages (friends, club members, etc) to make these calls... we will be in a MUCH better position and will hopefully make some progress FINALLY!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Saw your note... got upset.. and forgot to post this...
Duh me.
```````````````````````````````````````````````
This sample letter is for IDiot ducks to send to Congress. NOT pretty!!!
````````````````````````````````````````````````
The Honorable �First Name� �Last Name�
�State Legislature Name�
�Street Address�
�City�, �State� �Zip Code�
Dear �Title� �Last Name�,
I am an infectious diseases physician treating seriously ill patients in and around �City�, �State�.
This letter is to express my strong opposition to Legislative Bill �Bill Number�, which sanctions the use of long-term antibiotic therapy to treat Lyme disease.
In urging your opposition to this legislation, my primary concern is to ensure the best quality in patient care and to protect the public's health and safety.
To this end, I believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called ``chronic'' Lyme disease that are advocated by a small group of physicians.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, fatigue, and difficulties with concentration or memory loss.
Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having ``chronic'' Lyme disease.
Many of these so called ``chronic'' Lyme diagnoses are supported by laboratory tests that are not evidence based and are not regulated by the Food and Drug and Administration.
Even more troubling, physicians who diagnose ``chronic'' Lyme disease often advocate treating patients with repeated or prolonged courses of oral or intravenous antibiotics that have no proven value other than an anti-inflammatory response in some individuals, and which may in fact do more harm than good.
Of greatest concern is the bill's misguided attempt to sanction the use of long-term antibiotic therapy to treat Lyme disease.
The premise for prolonged antibiotic therapy for Lyme disease is the notion that some spirochetes can persist despite conventional treatment courses, thereby giving rise to the symptoms ascribed to chronic Lyme disease.
Not only is this assertion microbiologically implausible, there are no convincing published scientific data that support the existence of chronic Lyme disease.
Rather, carefully designed studies of Lyme disease have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with antibiotics.
A recent New England Journal of Medicine article stated unequivocally ``that there is little or no benefit associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for a properly diagnosed episode of Lyme disease.''
Furthermore, the scientific evidence indicates that long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment.
Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other
Page Two - Lyme Disease Letter
microorganisms, creating ``superbugs'' that cannot be treated with currently available drugs.
In summary, far from improving the patient's quality of life, prolonged antibiotic therapy may actually increase the patient's suffering.
As an alternative to enactment of Legislative Bill �Bill Number�, I urge the committee to hold public hearings on Lyme disease.
Such hearings could play an important role in educating our fellow citizens about the controversy surrounding the treatment of this debilitating condition.
However, in order to ensure that legislators get a science-based assessment of appropriate treatments for Lyme disease, I strongly urge you to invite board-certified ID specialists who support evidence-based medicine to testify at all public hearings.
On a personal note, as an ID physician who treats patients with serious infections on a daily basis, I have profound empathy for patients who are ill and have been told their illness is due to ``chronic'' Lyme disease.
I do not doubt that these individuals are suffering, but many report non-specific symptoms that may be attributable to a number of medical conditions.
Therefore, I would strongly encourage patients who are diagnosed with ``chronic'' Lyme disease to seek an expert second opinion to enhance their opportunity for a correct diagnosis and appropriate treatment.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com) or the American College of Physicians (www.acponline.org).
posted
Pineapple, If you and we don't do this, we lose the country - so we have to keep trying now. The IDSA doctors are not able to test nor treat patients successfully and that's what we have to tell the congressional offices.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
I MADE MY 3 CALLS JUST NOW!! All were very receptive and NICE!! ***************************
Ted Kennedy's staff member said they've had at least 100 calls today!! *********************
Pallone's office said they were flooded. I told them I've had chronic lyme disease for 38 years; 34 yrs. MISDIAGNOSED by 50 drs.
Iowa doesn't have any chronic lyme literate drs. here so I was forced to go out of state for treatment costing me $1,000 travel expenses and $5,000 OUT OF POCKET MEDICAL.
Iowa's BCBS refuses to pay any LYME expenses.
Pallone's staff member ASKED FOR MY HOME ADDRESS! ************************************************
called energy no. who explained we are CALLING SEN. PRIVATE NO. THERE VS. ENERGY COMMISSION NO.
they've been flooded w/calls the last 2 days. before he transferred me over, I again told my above story.
he stated they are very SYMPATHETIC to us and have heard from all over USA on this problem.
got answering machine. I spelled out my name/address/state and told my above story.
in fact, at this time I WAS ON A ROLL and kept going until they said i had 15 seconds left. said bye...end of call. I WAS CUT OFF!
i mentioned we need to get a hearing to get both sides of the issues out there for chronic lyme vs. idsa.
we need more money and cut back money on WEST NILE VIRUS AND BIRD FLU $$$$. ******************************
IP: Logged |
posted
As Betty said, the calls went very well. Dingell's office said the calls had filled up the answer tape many times over today. Keep it coming, folks!
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've heard several hundred calls per hour... and we hit 2,000 calls in one office alone!
Keep it up!!!
Call and get folks you know to call. We are making ourselves known.
posted
i just called again the 3 offices in 4 minutes!
explained who i was, please put this on their hearing agenda as the bill has been there 10 years with NO ACTION AT ALL.
it's we lyme patients are the ones suffering for this; out of pocket expenses for medical and traveling since IOWA DOES NOT HAVE A CHRONIC LLMD HERE,
infectious drs. wrote congresss, and it's full of 50-75% LIES.
we need to get both sides out on the table and go from there as again, it's us PATIENTS, NO ONE ELSE, that is suffering for this.
yes, our llmds are...but i didn't say that to them.
i asked pallone's man if they'd gotten many calls; YES!
last call to dingle's office ... i got someone who listened and SLAMMED DOWN THE PHONE AS SHE SAID THANK YOU FOR CALLING! manners *****************************
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
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!
![[Big Grin]](biggrin.gif)
![[woohoo]](graemlins/woohoo.gif)
![[cussing]](graemlins/cussing.gif)
![[Smile]](smile.gif)
![[lol]](graemlins/lol.gif)
![[Wink]](wink.gif)
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic