posted
Before I write or call my congressmen I could use a little more info.
I would like talking points about the bill,lyme stats...
I concentrating on learning more about lyme and I don't have much left for the long version of the bill.
Is there a one page fact sheet and/or taking points on both pieces of legislation (state, fed)?
I've worked on two political campaigns and sample letters, talking points, a fact flyer, help people feel more confident to take action.
Is there a website (besides the tracking one) or something I probably missed to easily learn more?
Posts: 105 | From Mass | Registered: Apr 2009
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bettyg
Unregistered
posted
cathy mary,
i'm pasting a post i started at TOP OF ACTIVISM forum; it has talking points at end! ******************************************
ENERGY SUB-COMMITTEE NAMES/PHONE/FAX NOS. for HR 1179 lyme bill !! **********************************
lou b, please make this a STICKY feature at top of ACTIVISM for our HR 1179 bill; big thanks!! [Smile] xox
This is the current list of folks on energy/commerce committee who have our LYME disease bills in THEIR sub-committee!
It was compiled by dharma, Kristy, from mdjunction.com lyme board! Well done Kristy!
For those with FREE long distance service, please call the folks below asking them to support HR 1179.
Please FORWARD to all on your own LYME GROUP LISTS so we ASSERT ourselves as we know IDSA, infectious drs. are lobbying hard against us!! thanks [Smile] xox
The text is after all the phone numbers and complete list of committee members!
Energy and Commerce, Subcommittee on Health ------------------------------------------------------------
CA office: Phone: (323) 651-1040 Fax: (323) 655-0502
Members of the House Appropriations Committee
Democrats
David R. Obey, Wisconsin, Chairman
John P. Murtha, Pennsylvania
Norman D. Dicks, Washington
Alan B. Mollohan, West Virginia
Marcy Kaptur, Ohio
Peter J. Visclosky, Indiana
Nita M. Lowey, New York
Jos� E. Serrano, New York
Rosa L. DeLauro, Connecticut
James P. Moran, Virginia
John W. Olver, Massachusetts
Ed Pastor, Arizona
David E. Price, North Carolina
Chet Edwards, Texas
Patrick J. Kennedy, Rhode Island
Maurice D. Hinchey, New York
Lucille Roybal-Allard, California
Sam Farr, California
Jesse L. Jackson, Jr., Illinois
Carolyn C. Kilpatrick, Michigan
Allen Boyd, Florida
Chaka Fattah, Pennsylvania
Steven R. Rothman, New Jersey
Sanford D. Bishop Jr., Georgia
Marion Berry, Arkansas
Barbara Lee, California
Adam Schiff, California
Michael Honda, California
Betty McCollum, Minnesota
Steve Israel, New York
Tim Ryan, Ohio
C.A "Dutch" Ruppersberger, Maryland
Ben Chandler, Kentucky
Debbie Wasserman Schultz, Florida
Ciro Rodriguez, Texas
Lincoln Davis, Tennessee
John T. Salazar, Colorado
Republicans
Jerry Lewis, California, Ranking Member
C.W. Bill Young, Florida
Harold Rogers, Kentucky
Frank R. Wolf, Virginia
Jack Kingston, Georgia
Rodney P. Frelinghuysen, New Jersey
Todd Tiahrt, Kansas
Zach Wamp, Tennessee
Tom Latham, Iowa
Robert B.Aderholt, Alabama
Jo Ann Emerson, Missouri
Kay Granger, Texas
Michael K. Simpson, Idaho
John Abney Culberson, Texas
Mark Steven Kirk, Illinois
Ander Crenshaw, Florida
Dennis R. Rehberg, Montana
John R. Carter, Texas
Rodney Alexander, Louisiana
Ken Calvert, California
Jo Bonner, Alabama
Steven C. LaTourette, Ohio
Tom Cole, Oklahoma
*************************
Sample Letters and phone contact to both House and Senate in support of H.R. 1179 and the matching bill soon to be introduced on Senate floor (Thank you LDA)
SAMPLE phone blurb when asking House Members for bill support.
I am calling to urge the Congressman/woman to co-sponsor HR 1179, the Lyme & Tick-Borne Diseases Bill.
Lyme diseasae has become an epidemic spreading across the country, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor HR 1179 today. Thank you (Give your name, address, phone number)
SAMPLE phone blurb when asking Senate Members for bill support.
I am calling to urge the Senator to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced by Senator Dodd.
Lyme diseasae has become an epidemic spreading across the country, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process.
Only you have the power to make that happen. Please sign on to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced. Thank you
(Give your name, address, phone number) ****************************************************
Phone calls are better than letters but letters are still great!
I think some key talking points with aides would be to:
1.) Briefly tell your tale...how many docs you've seen, how many misdiagnoses, how much money you've spent, your current situation
2.) Ask them if they can find out some of the answers to the common questions we all have...
~Why don't we have more accurate testing?
~Why are doctors either so ignorant and/ or arrogant about Lyme diagnosing and treating? Why is it so hard to get an early diagnosis before real long-term damage occurs?
~Why do the IDSA guidelines supersede what perfectly good clinicians are finding in their practices that are in direct conflict with the guidelines?
~Why were the guidelines even published without the input of frontline treating physicians?
~Why did the IDSA opt to settle the Atty.General of CT's case against them instead of standing behind the truth and weight of their scientific evidence...if it is SO accurate and the end all be all of everything Lyme as they would have us all believe?
~Don't patients have any rights to have all facts, thoughts and opinions about Lyme explained to them and then decide with their doctor what treatment is best for them? And why are the doctors who do go beyond the IDSA guidelines to help their very sick patients get persecuted and threatened?
~Why are insurance companies allowed to deny treatment based on guidelines that are questionable and were under investigation?
~How are we going to protect our children and grandchildren from this epidemic when their playgrounds, bike paths, schoolyards, state and national parks and even their own backyards are becoming more and more likely places for infection to occur with each passing day?
~There are studies that have found live spirochetes in not only blood and spinal fluids but also in every other fluid in the body...semen, saliva, urine,etc...Why isn't there money for more research into these possible forms of transmission?
~Are our blood supplies safe? It has been proven that Lyme can be acquired through transfusions? Why are they not screening donated blood for Lyme?
3.) Break out your facts sheet and kind of do a ...Did you know that....yada yada yada.
Try to keep this as conversational as possible...try something like...
"And I just learned from this study (quote the study as accurately as possible please) that such and such...Can you believe this stuff? I was stunned and alarmed to say the least..."And so on...
Always try to leave the conversation on a friendly note and in a way that you can call back for updates from whomever you spoke with...
Remember***
We need to educate the aides of these Congress people so when the IDSA lobbyists come to chat with them as well, they can be armed with the right tools to put them and their science on the spot.
And that is exactly what the doctor ordered!
Good Luck! And thank you in advance for helping!
******************
SAMPLE letter when asking House Members for bill support.
Your first & last name
Month, day, year
Dear Congressman xxxx:
Please co-sponsor the ``Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009'' (HR-1179). The Senate version is expected to be introduced shortly.
Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from an infected tick. The problem that exists today, however, is much more than just Lyme disease.
There are many diseases (some life-threatening) carried by ticks that can complicate the diagnosis, treatment and ability to recover once a patient has been exposed, e.g.
In humans, infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes,
while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems.
Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.
Lyme is called the ``great imitator,'' because it can mimic MS, ALS, fibromyalgia, lupus, chronic fatigue, Parkinson's, Alzheimer's, and even autism.
On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed.
At the highest risk of acquiring this horrible disease are our children, ages 5-14.
The CDC states Lyme disease is still vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. That translates into more than a quarter of a million new cases of Lyme disease each year.
The medical resources available to help our family members, friends and neighbors with Lyme disease are far from adequate.
For example, a person with Lyme can test negative and still have the disease. Treating doctors think tests miss 50 % or more of patients.
Research funding, as provided for in this bill, could lead to the development of more accurate diagnostic tests.
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding.
Mothers and fathers are losing their jobs and their homes and many seek disability because they cannot get treatment.
The federal government is footing the bill for many of the chronic cases that slip through the current system and the numbers continue to grow.
Federal legislation is important because it will open the door for more opinions and unbiased research to get to the real answers. Please cosponsor this bill today and actively promote it to your colleagues.
Sincerely,
Your name complete mailing address ---------------------------------------
SAMPLE letter when asking Senate Members for bill support.
Your first & last name
Month, day, year
Dear Congressman xxxx:
Please co-sponsor the ``Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009'' . The Senate version is expected to be introduced shortly.
Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from an infected tick.
The problem that exists today, however, is much more than just Lyme disease.
There are many diseases (some life-threatening) carried by ticks that can complicate the diagnosis, treatment and ability to recover once a patient has been exposed, e.g.
In humans, infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes,
while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems.
Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.
Lyme is called the ``great imitator,'' because it can mimic MS, ALS, fibromyalgia, lupus, chronic fatigue, Parkinson's, Alzheimer's, and even autism.
On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed.
At the highest risk of acquiring this horrible disease are our children, ages 5-14.
The CDC states Lyme disease is still vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded.
That translates into more than a quarter of a million new cases of Lyme disease each year.
The medical resources available to help our family members, friends and neighbors with Lyme disease are far from adequate.
For example, a person with Lyme can test negative and still have the disease.
Treating doctors think tests miss 50 % or more of patients. Research funding, as provided for in this bill, could lead to the development of more accurate diagnostic tests.
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding.
Mothers and fathers are losing their jobs and their homes and many seek disability because they cannot get treatment.
The federal government is footing the bill for many of the chronic cases that slip through the current system and the numbers continue to grow.
Federal legislation is important because it will open the door for more opinions and unbiased research to get to the real answers.
Please cosponsor this bill as soon as it it introduced and actively promote it to your colleagues.
Sincerely,
Your name complete mailing address **************************
THIS IS WHAT I DID LAST THURS. & FRIDAY, May 1, 2009 !! [Smile]
i called 39 members of ENERGY COMMISSION who has our HR 1179 lyme bill asking them all to CO-SPONSOR our bill with this info:
i've had chronic lyme 39 yrs; 34.5 yrs. misdiagnosed by 40-50 drs....most were so sorry to hear that!
gave them my/our 3 brief lyme issues:
1. we want 100% accurate blood test to diagnose lyme.
2. blood supply; we want them to test for LYME & ALL CO-INFECTIONS which isn't being done. fyi; 1 man thought i said COLON INFECTIONS! had to laugh on that one.
3. our health insurance companies are denying us reimbursement for lyme expenses since they are using 06 infectious drs. lyme guidelines since they excluded scientists and our chronic lyme literate mds in the decision process.
almost all let me give all the above with my name/address, and 1 even asked my phone no....a FIRST for me!
only 1 rude woman who would not take any info; my name or issues.
another woman said we were called by 1 person earlier that day and didn't need anything from me.
ILLINOIS WOMAN HAS SIGNED AS CO-SPONSOR since her constituents contacted her many times & met with her! SO IF YOU CALL HER, THANK HER FOR BEING A CO-SPONSOR!! we don't need to sell our stories to her [Smile]
for a person like me with DRY MOUTH; what a challenge that was calling 20 daily, and drinking as much water as possible.
I've spent a few days emailing everyone first very detailed, then very, very simple instructions for how to support the Lyme Disease Bill.
In the simplified version, I provided the phone numbers and email addresses and blurbs right in the email, so they don't even have to go to the cwork.com site, which yielded higher results.
On Friday, I called Rep. John Olver's W. Mass. office AND his DC office and emailed his DC office. I insisted on telling my Lyme story (as I did with Kennedy and Kerry) to his legislative healthcare aide or that aide's voicemail.
Because my speech is severely neurologically affected by Lyme/babesia (sometimes I can't voice at all, sometimes it sounds very labored and distorted), I thought it might make more of an impact for them to HEAR what Lyme/TBDs have done to me, and that I put the trouble into calling and talking (or leaving voicemails).
Anyway, I just listened to my voicemail, and there's a message from Rep. Olver's aide, Lisa Weil (sp?), saying that he is happy to support the bill and is now a co-sponsor! Wahoo!
This is also good news because Olver is on the Appropriations Committee for the House.
I've asked my friends, family, and disability community activists to call reps and senators, particularly Olver, so perhaps that had an impact. I don't know how many have called him.
It's great to feel like something you do makes a difference! We can do it!
Please keep calling your senators and reps!
Please ask your friends, family, coworkers, neighbors, congregation, etc., to call and tell your story (or their story, if they are affected by Lyme, themselves).
I discovered some were overwhelmed, not knowing what to say. I told them, "Just call and say you want them to support HR 1179 - The Lyme & Associated Diseases Bill, and ask them to co-sponsor it."
Also, to Olver's constituents: Please do call him! Thank him for co-sponsoring, and THEN tell him how important it is to you (your family, friends, whoever) that the bill receive attention and funding from the Appropriations Committee. :-D
Thanks to BettyG and Lou for the info above, too. I typed up a letter and had my helper fax it to the legislators on the committee that has the bill.
I've been in bed all day. But now I'm not sick and grumpy -- I'm sick and elated!
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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bettyg
Unregistered
posted
sharon, what wonderful news you posted! way to go girl; now rest; bed time for me.
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posted
Well done Sharon, you made it easy for all of us.
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
New Support Groups
Sturbridge Lyme Awareness of Massachusetts Support Group
I'm reposting this information and updating the support groups section of this thread so others are aware of new data.
"Our Sturbridge based group is bringing awareness to our communities about Chronic Lyme Disease and offering support as well as much needed help to those with tick-born diseases. Under Our Skin showings will be coming soon as well as a Support Group serving South Central Massachusetts. We are Sturbridge Lyme Awareness of Massachusetts.
Some new information came in on another support group in Massachusetts. I added it to the list up-top on the post:
Post: April 14, 2009 09:13 AM
Here is the group:
(5) The Concord Lyme Support Group meets the fourth Thursday of the month in the Trustees Rroom of the Concord Free Public Library, 129 Main St., Concord, MA at 7 p.m. One may come from any. For further information Phone: Rose Ruze (978) 369-2396 or e-mail [email protected]
quote: I'd like to start a Metrowest Lyme Support Group through meetup.com. I've found that meetup.com is the absolutely easiest way to start, organize and--especially for me--maintain a group.
It's not free but it's not expensive, either, depending on how many people are in the group. One of my meetup groups is less than $5 a month because it's a big group. But if we even have just 5 people it could be as inexpensive as $2.20/month.
Please e-mail me if you're interested. Thanks!
[email protected], and please type "Lyme" or "Lyme Support Group," in the subject field, so that I don't miss you.
Karen ;-)
I'd like to encourage people in Massachusetts around the Metrowest area to sign up and show up for these support group sessions. I'm certain Karen will be working on political activism projects which would certainly help Massachusetts further our agenda. She'll be attending the State Democratic Convention shortly and will be looking for support from people to provide her information on what she can present.
Franklin County Support Group (Sunderland)
Another group is functioning in Sunderland for Franklin County area.
quote: Just a heads up that this group will be meeting the fourth Tuesday of this month, May 26 at 5:30 pm until 7:30 pm at the Sunderland Public Library.
Any questions please call Sue.
Susan M. Louisignau 229 Maple St. Northfield, MA 01360 Phone: 413-498-2774
Massachusetts State Democratic Convention
Karen also posted this:
quote: I'm going to attend the state Democratic Convention in June and I would like to bring with me handouts to give to just about everyone I meet. Would any of you be willing to help me either distill the basic facts or do any of you have examples of handouts to use?
It's the first weekend in June, so please e-mail me if you want to help. If anyone is interested in having a table there, please e-mail me ASAP so I can find out how to get that going.
My e-mail is [email protected], and please type "Democratic State Convention," in the subject field.
[ 05-15-2009, 08:47 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
hi mike, NO TIME is shown for this meeting.
GREAT WINDUP; got me all excited and i don't even live in mass xox
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
ATTENTION: THERE WILL BE A MEETING TO WORK ON NEW MASSACHUSETTS LEGISLATION IN PERSON ON MAY 20th
Alright folks, here is your chance. Here is the opportunity to work on the "big gun" project that we've all been looking forward to. I want a duplicate of the CT Lyme Bill. Come to this meeting.
Get out your walkers, canes and wheel chairs -- pop some pain killers and get yourself and your supporters (whichever ones are left anyway....) and contribute by showing up.
Here is the quoted posting from MassachusettsLyme's Elian.Laura (That's her username)
quote: "There will be a meeting regarding "How to approach legislative change"
Wendnesday. May 20th at the Boxborough Memorial Library. The meeting is at 7:30, May 20th.
Address: 427 Mass. Ave., Rt. 111, Boxborough, MA.
Anyone in the state looking to collaborate on effective strategies to pull this effort together should attend.
Contact person is Kurt Hayes E-mail: [email protected], Phone: 978-621-8616.
One Additional Note from Elian.Laura
UNDER OUR SKIN SHOWING IN WORCESTER MAY 19th
quote: Reminder, there is a meeting and simultaneous viewing in a seperate room of the Under Our Skin DVD. The date is: Tuesday May 19th at 7:00pm in Worcester at the Navy Operational Support Center (NOSC)640 Plantation St.
As a newly emerging group there is a strong interest by members of it, and other groups, to collaborate and form a model for interested groups in MA. Any strongly formed group that has been using an effective model and can help by sharing their experiences and successes should please attend!
On your mark, get ready, set, GO! Let's slam the IDSA with another advance forward.
[ 05-21-2009, 07:57 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sturbridge Lyme Awareness of Massachusetts Support Group Is Holding First Time Meeting
Sturbridge Lyme Awareness of Massachusetts is hosting it's very first support group IN Sturbridge at the Joshua Hyde Library on Main street. Meeting room downstairs on Thursday 5/21 @ 6:30pm-8pm. This is SLAM's first official group so we hope you can come and support fellow lymmies. Our June Support group mtgs. will be Thursday 6/4, 6/25 at the same place and time, Support Group will be headed by Trish and SLAM group members.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
THE DAWNING OF A NEW MASSACHUSETTS BILL FOR LYME DISEASE
Well folks, we're one step closer to our goal. Please contribute whatever energy you can. We must finish this together. The Boxbourgh meeting which I mentioned up above on May 14th 2009 has taken place and yielded very quick results. I've been told the meeting was an immense success thanks to the efforts of a number of people's efforts.
This news was just released on MassachusettsLyme by Mitch Bradley.
quote: I just got email from Rep. Brownsberger, a member of the MA state legislature with whom I am personally acquainted. He says that he has signed on as a co-sponsor to a bill that Rep. Hargraves filed on 5/20. The bill is entitled "An Act relative to the treatment of chronic Lyme disease" and reads:
Chapter 112 of the General Laws is hereby amended by inserting after section 12CC the following section: -
12DD. A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purposes to a person diagnosed with and having symptoms of Lyme disease of a diagnosis and treatment plan has been documented in the physician's medical record for that patient and no physician shall be subject to disciplinary action solely for prescribing, administering or dispensing long-term antibiotic therapy for a therapeutic purpose for a patient clinically diagnosed with Lyme disease if a diagnoses and treatment plan has been documented in the physician's medical record for that patient.
Note from METALLlC BLUE: Keep up the pressure, help out where ever you can. We need your skills. We're going to break these so called "Titans". This is *our* time.
Once again, remember why you're doing this:
How many of you have a child with a PICC line and feel helpless that your child is sick? -
Who here has lost someone they loved to complications arising from Lyme Disease because they could not receive treatment? -
How many of you have felt hopeless that we could not generate local support to have our voices heard and to actually change the situation we're all in? -
Who here has Lyme Disease and can look in the mirror each morning and say "I'm perfectly ok having Lyme Disease and I don't mind being abused and told that I'm not sick, and I really don't mind that my family and friends have -- for the most part -- abandoned me? -
How much is it costing you out of pocket to receive the care that you should be receiving because you already have/had Health Insurance, but they were unwilling to help? -
Are you ****ed off yet? Aren't you tired of listening to your partner sob themselves to sleep because they're in tremendous pain? It always follows right after they finish telling you that they just want to die and that they don't think they'll be strong enough to keep going. So you sooth them, running your fingers through their hair gently and you lie to them, telling them "Everything is going to work out, I promise."
I don't know about you, but I curse those who leave me laying awake at night next to my partner feeling disgusted with myself because *I* can't fix her -- and I'm sick with this disease too! "
I'm tired of fighting for just me, because this ain't my American Dream." - Jon Foreman
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
DID DR. WORMSER JUST SAY WHAT I THINK HE DID?
This is a short update to inform everyone that the projects listed above are still ongoing.
Here is a little motivation to keep us all moving. Earlier today I responded to a news article published by "TheDay.com" It's a news outlet in Connecticut. An Editorial was written that implored Governor Rell of Connecticut to "not" sign the Lyme Disease Bill. As you may know, the bill is designed to allow physicians the right to use long term antibiotic therapy without persecution from the state specifically for the treatment of Lyme Disease (including Chronic Lyme Disease).
Dr. Gary Wormser -- or someone posing as him -- wrote a readers comment responding to all the people who had commented on the editorials poorly researched "facts" and one sided propaganda laden inaccuracies.
" Posted - 6/19/2009 3:49:49 PM Looks like all the "lymies" have come from "lymenut" (www.lymenet.org) to tell their sob stories. But, no amount of amount of science will convince this small but very vocal group of patients that they do not have lyme disease. For others, the New Englad Journal of Medicine has published its evidence based appraisal of "chronic lyme disease". http://content.nejm.org/cgi/content/full/357/14/1422
Another individual called "The Voice Of Reason" also posted a comment. I believe this individual is one of the authors of the 2006 IDSA Lyme Disease Guidelines, just like Wormser.
Posted - 6/18/2009 11:15:46 AM Doesn't it seem strange that so many of our truly outstanding scientists from agencies such as the NIH, CDC, FDA, and IDSA can be so wrong? And what are the scientific credentials of those who seem to have all of the answers without any evidence to support their false vies and assumptions. I have seen the film "Under Our Skin" and have read excepts from "Cure Unknown". Both are full of inaccuracies and false statements, and are not worth the price to see or read. Just remember this: after these people have destroyed those institutions that have contributed so much to protecting our public health, where will we then go? I shudder at the thought of going to the LLMDs, who have no understanding of evidenced-based medicine or science.
Voice of Reason Lyme, CT - 6/18/2009 11:27:02 AM
Followed by:
Posted - 6/18/2009 2:03:00 PM Did it ever occur to those who advocate long-term antibiotic therapy that the reason SO MANY accomplished scientists don't agree with them is that they are simply wrong? The only way they can justify holding on to their erroneous views is to claim that there is a conspiracy, or that there are conflicts of interests, or .....What utter nonsense. I challenge all of them to put their money where their mouth is and PROVE that they are right. A slick schmaltzy film and a idiotic book don't prove anything, except to re-enforce their preconceived ideas. They have nothing to do with science and the truth.
Voice of Reason Lyme, CT
I responded to Voice of Reason.
Voice Of Reason (Dr. Eugene Shapiro?)." The bill will be signed, and other states will soon follow. Soon the available evidence supporting persistent borrelia infection will gain even more attention as talk shows present our case. As a physician, your job was to help people by improving the quality of lives. Instead you've spent years consulting for insurance companies and appearing as an "expert" witness against physicians who oppose your position. You offer no rational alternatives that actually help reduce the suffering of patients who suggest they may (or do) have CLD. You give patients "nothing" to work with other than vague waste bin diagnosis. You and your team failed to give us a voice when concerns about CLD were raised during the formation of the guidelines that you authored. We made many attempts. The Professor Of Infectious Disease of Boston University Medical -- an IDSA member -- was especially vocal and you literally just dismissed him. When controversy exists over opposing scientific issues, it's critical to mention the available evidence on "both sides" that is being debated especially when forming guidelines. You make no mention of the possibility that persistent infection could be responsible in spite of well over 100 studies indicating it's still on the table as apart of the debate. You speak as if there is no debate among equals. That isn't logical or scientific. As long as your argument fails to hold water we'll continue advancing until your forced to consider our position -- even if by chance we're wrong.
Michael Springfield, MA
Final Note: : Whether or not these people are in-fact Dr. Shapiro or Dr. Wormser posting on these news websites makes little difference. We will not tolerate being bullied, insulted and intimidated.
[ 06-19-2009, 08:49 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Nice Job in your response. Very articulate.Thanks
Posts: 261 | From Piedmont | Registered: May 2008
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by METALLlC BLUE: DID DR. WORMSER JUST SAY WHAT I THINK HE DID?
Final Note: : Whether or not these people are in-fact Dr. Shapiro or Dr. Wormser posting on these news websites makes little difference. We will not tolerate being bullied, insulted and intimidated.
*******************************
sorry, i'm not a mass. member, but have to comment here on this one since you posted wormer's post or an IMPOSTER, & SAME DAY POSTS THIS ONE ATTACKING ME!!! coincidental; i don't think so! ******************************************************
GARY WORMSER'S ATTACK ON ME !! SLANDER!! [cussing] [toilet]
members,
i'd also appreciate some MORAL support right now by your leaving a short message on this ongoing saga!
i've never been called this in my life and i DESPISE WHAT HE SAID. 24/7 LIAR!! HOG WASH at its best. ****************************** my reply, no. 77 just now....
gary, my you have lived up to your nickname of "the WORM"! how appropriate for you. MUDSLINGING, NAME-CALLING .. HOGWASH!
it's drs. like YOU who have caused me to be physically sick for 39.5 yrs!
i resent your INNUENDO; well, i guess "it takes ONE, TO KNOW ONE"! now we know where you fit in.
i'm surprised the editors PRINTED your vicious post with SLANDER towards me!
worm, you are not worth another word from me! PU.
bettyg, iowa lyme activist
[QUOTE who="Gary Wormser"]
I have read all your sob stories. And, I feel badly for you, but the reality is that, while you may be "ill", it is most certainly not with "chronic lyme disease."
Medicine is not driven by case reports or anecdotal stories. Rather, we follow evidence based medicine, not influenced by emotion or bias.
And, every randomized blinded patient study has failed to demonstrate any lasting benefit to long term antibiotics for "chronic lyme disease."
"LLMDS" are the lowest of the low.
These, often poorly educated physicians, have sold out the medical system to make a buck (or a couple hundred thousand) by treatment the naive and vulnerable with potential risk therapies.
And, finally, BettyG is just plain psycho.
This woman claims to have had chronic lyme disease for what, I think 40 years? There is absolutely NO precedent for that type of infection at all.
SHe posts an AVERAGE of 20 posts a day on lymenut and has the energy to seemingly be very productive, and active, but is very vocal about how she lives off her disability income.
Her life REVOLVES around this supposed illness. She is obsessed with it. Seems like all the trademarks of a psychotic disease...
Gary Wormser, MD[/QUOTE]
go get em lymenet members!! make him eat crow or shall we just say any tick!! [tsk] [puke] *****************************
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METALLlC BLUE
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Clearly Betty, we have people swinging for the other team who are continuing to review Lymenet (Lymenut?) and then posting these comments -- which absolutely reflect the position that Dr. Wormser and Dr. Shapiro have reinforced in nearly every media article they've taken part in.
While I can't prove anything, my gut says that's them. Whoever it is, they don't merit further response from me. I'll just keep posting more studies that'll be ignored.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
to all who replied above, a heartfelt thanks for your comments and those of you who went online to the courtant newspaper article and posted there as well as voted for our comments.
i've been working on several things, and trying to get ready to honor hubby tomorrow on DAD'S DAY!!
again, THANK YOU to all above & on the other posts who gave ME needed support when i was dealt a low blow !!
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METALLlC BLUE
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THE BILL PASSED IN CT
The bill in CT protecting physicians who choose to prescribe long term antibiotics for patients with Lyme Disease was just signed into law by the CT Governor. It's official!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
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posted
Does this mean Tracy9's superstar LLMD is back in business?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
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Seek, Unfortunately she's still not able to treat Chronic Lyme Disease or associated infections (from what I've been told). The bill that passed recently is only for CT residents.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
Well, it's now September. We're a long way from where we used to be, to where we are today.
I have taken a break for the last few months -- and will continue to take time off, but I wanted to let everyone know that the fight has continued while I rested. Your ongoing efforts will solve our problems as a community of sick seeking political and legal protection. Your efforts will lead to answering questions about how this illness (s) function, and what it will take to overcome it. Financial resources, walks, charity events and other projects are crucial to raising the money to fuel the researchers efforts of those trying to actually "figure it out."
I am hopeful that more of you will join forces with Massachusetts Lyme to put the final nails in the coffins that we need to get our latest bills (sonn to be laws) passed.
For those in other states, the Yahoo groups are "state" connected. Leaders often go from forum to forum keeping us interconnected on state and federal projects, and often members from other states well help another states cause, even if it doesn't directly influence their home state. These types of projects are crucial. While my focus was on Massachusetts in this post, many of our projects resonated with people from a variety of states who either wanted to help, or took ideas from us and began starting more support groups, passing out more pamphlets, or screening Under Our Skin, as well as going into schools and educating students on prevention and care.
We're winning this fight, but it's like a massive tug of war. The more of you that get behind me and all the other advocates and leaders and start fighting to get the word out constructively, the faster progress will take place, and the more powerful resources we'll have. To begin, go to the forum, join, and then make a post asking "What can I do to help our cause in Massachusetts? Who could use a hand doing some projects?" -- people will step forward and tell you what they're all working on and will offer positions.
All of you have gifts to offer. Even if you offer 5 mins of your time -- it's everything for our cause. Talk to the group leaders for more information. If you wish to help through a different state, go to Yahoo and type in the State+Lyme and you should find everything from CaliforniaLyme, to WashingtonLyme.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
Well, it's all come down to the wire now. Now we'll see what the politicians are made of and find out if our bill to protect physicians is going to make it into law.
Update September 22nd 2009: This thread was originally made back in early April. My oh my how far we've come in only 6 months. You all made me so proud. Tracy, Trish, and everyone else -- you guys are awesome. Everyone did their individual part and we've woven a strong argument for those in Massachusetts who are suffering. To everyone who started support groups, I am grateful for your hard work. They blossomed quickly and with one voice we've told our politicians and the state that we're not going to take it laying down (No pun intended for those of us bedridden).
Our physicians should never be forced to abandon us -- our family, friends, and especially our children. The fight isn't over, but I am very hopeful for us.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Push for help on Lyme disease Local families testify for bill at Statehouse
By Sarah Thomas, Sun Correspondent Updated: 09/23/2009 06:36:02 AM EDT
BOSTON -- For Donna Castle of Groton it all started in 2006 with a positive diagnosis for Lyme disease.
That year, doctors also revisited a diagnosis of Lou Gehrig's Disease given to Castle's daughter when she showed symptoms of tendinitis in both hips, mood swings and hand tremors.
Like herself, Castle's daughter was also determined to be suffering from chronic Lyme disease.
The experience brought Castle to the Joint Committee on Public Health yesterday to testify in support of a bill that would give Massachusetts doctors discretion to prescribe long-term antibiotics for patients diagnosed with chronic Lyme disease.
The law, being pushed by Reps. Jennifer Benson, D-Lunenburg, and Robert Hargraves, R-Groton, would require insurance companies to cover such treatment beyond the 28-day limit recommended by the Centers for Disease Control and Prevention.
Currently, six residents of Castle's duplex have been diagnosed with Lyme disease: Castle; her daughter; neighbors Robin and Denis Lemieux and their sons, Jared and Derek. The Lemieuxs' daughters are currently being tested after exhibiting neurological symptoms.
"Recently, I spent four weeks in the hospital. The doctors wanted to give me the last rites," Robin Lemieux said. "I'm still on a respirator because I may have permanent lung damage."
Lemieux's husband and sons, along with Castle's daughter, have all been prescribed long-term antibiotics that they've had to travel out of state to obtain.
But they say the proof is in the recovery. After two years on antibiotics, Castle's daughter is symptom-free.
"She is a walking miracle," Castle said.
Lyme disease is caused by a bacteria transmitted to humans by deer ticks. The disease has spread across New England and new cases are growing at an alarming rate. Some hospital officials are terming it an epidemic.
"Nationwide, the incidence of Lyme disease is roughly nine cases for every 100,000 people," said Kurt Hayes of Boxboro, who heads the group Lymelite.org. "In Massachusetts, the incidence is 62 cases for every 100,000 people. That's 14 percent of the confirmed cases in the country."
According to the Department of Health, Middlesex County had 734 cases in 2008.
If detected early and treated with antibiotics, many patients can make a full recovery. But cases can languish untreated for years, due to inaccurate testing or a lack of the disease's most recognizable symptoms, such as fever or bull's-eye rashes.
Benson has found support for this bill among Democrats and Republicans, working with both Hargraves and Hayes, a former political opponent who challenged for Benson for her House seat in 2008.
"I talked a lot on my campaign about bipartisan action, so it's been a great experience," said Benson, who told the committee they could allow "miracles to happen" if they passed the legislation. "This is a big issue in my district. I have a lot of friends who have been affected, and I'm always concerned for my children. To tell you the truth, my dog has chronic Lyme disease."
Not all the speakers before the committee supported the measure. Dr. Mark Drapkin, Dr. Mark Pasternak and Dr. Roger Clark warned about the dangers associated with antibiotic use for longer than 28 days, which can include immune system deficiencies, digestive problems and the creation of antibiotic-resistant "superbacteria."
When questioned by the committee, Drapkin admitted he had previously extended courses of antibiotics for his patients beyond the 28-day mark.
"Antibiotics don't know good bacteria from bad bacteria," Clark said. "They just kill bacteria, including the ones that live in our colon."
The doctors also said that there had not been enough studies on Lyme disease for accurate diagnosis and treatment. Until then, they said, extended use of antibiotics should be reviewed by the Massachusetts Board of Registration in Medicine.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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METALLlC BLUE
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Alright guys, it's a little over a year later since I started this thread. Between now and then I've gotten my rear end handed to me with different treatments, so I really didn't get as much accomplished as I wanted, but thankfully -- you people did! You got really ****ed and you did an awesome job.
Today's News: "BOSTON -- A law allowing the long-term use of antibiotics for the treatment of chronic Lyme disease has been approved by the Legislature and is awaiting Gov. Deval L. Patrick's signature."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
We've done it, the massive hurdle has been overcome and the IDSA has been defeated in Massachusetts.
This was posted by Susan Fairbank Pitzer at 10 p.m. last night.
Governor Patrick signed our legislation into law this afternoon, as outside section 67 of the FY 2011 Budget!
Acknowledgments
We all owe Representative Robert Hargraves (R-Groton) and Senate Majority Leader Frederick Berry (D-Peabody) an enormous amount of gratitude. Both worked extremely hard to push this bi-partisan bill through the legislature --and to encourage the Governor to sign it.
As many of you know, it had initially been expected that the Governor would actually veto our section. Fortunately, with some political maneuvering and a massive outpouring from all of you, the Governor was persuaded.
After the signing, we had the opportunity to speak with the Governor briefly (and take a few pictures). While relating our stories to him and some members of the press about the difficulties of having to go out-of-state for treatment, Governor Deval Patrick did seem genuinely sympathetic and hoped this law would help us.
While we are under no illusions that this is suddenly going to fix the medical situation in Massachusetts- we do think it's a small step in the right direction.
A great deal of thanks also goes to Donna Castle, Sheila Statlender, Jayme Kulesz, Brenda Boleyn, Robin Lemieux, and several physicians that I still won't name online (old habits die hard;-) for all their hard work - as well as Karen Gaudian, Maggie Shaw, both of whom were instrumental in getting the Connecticut law passed - for their guidance in this process.
For those of you that are interested, the language is posted on the Governor's website:
The language is extremely similar to that passed in Connecticut and was thoroughly vetted by ILADS docs. For those of you that have been frightened by the very mention of ``CDC Surveillance criteria'', please note that this is only to acknowledge the inclusion of Lyme that does NOT meet CDC criteria in the provisions of this law and understand that this was necessary so that the law could not be misinterpreted at a later date to exclude cases that do NOT meet the CDC criteria.
Congratulations to us all for making Massachusetts just a little bit more `Lyme-friendly'.
Susan
[ 07-01-2010, 01:50 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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Yes indeed Tracy. Your story among others really got this ball rolling fast. Trish, and Merry girl too! You three did an excellent job! Back pats *lightly* for all!
Someone needs to call up Dr. L and tell her to get her booty back to Massachusetts! If we're lucky, she and many others may return and or begin treating patients correctly now. It'll take time, but eventually they'll now be able.
We can walk into our doctors offices and show them the Lyme Bill and say "It's ok, you're safe now if you want to help me!"
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
IDSA. This is how we in the Lyme Community See you
IDSA: And when it comes to treating Lyme, this is where we see you.
IDSA And this is what we're currently doing when we think of what failures you all are:
You just got owned. Prepare to experience your next epic failure. We will defeat you. We won this battle and we'll win the war. You can no longer obscure truth with your version of pseudo-facts.
[ 07-01-2010, 05:38 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Awesome!!! Thanks to everyone who worked so hard for this victory -
Posts: 13171 | From San Francisco | Registered: May 2006
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littlebit27
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LOL metallic those pictures are hilarous!!! I like the hand moving one, if I could put that in my book I totally would but I don't think the hand will keep moving lol.
Good Job to everyone involved. I wasn't around when this post first started but I read through a bit of it today. Really big step. Hopefully the more states that start allowing treatment the more will follow behind.
METALLlC BLUE
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posted
I'm confident things will improve across the U.S. over time. I can't wait to visit my primary and tell her all about this. Now I can give her the ILADS training paperwork and no one can threaten her for treating me and other patients.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Lymelighter
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posted
I'M IN TEARS!! TEARS OF JOY! After years of being frowned upon by the teaching hospital elite!!! YAYYYYY!!
THIS IS HUGE & SOOOOO IMPORTANT GIVEN MA IS HOME TO SOME OF THE FINEST, ALBEIT, LYME ILLITERATE TEACHING HOSPITALS IN THE WORLD!
IT is a DISGRACE that a state with some of the finest academic medicine in the world is in the DARK when it comes to Lyme and coinfections.
FROM THE BOTTOM OF MY HEART, THANK YOU Donna Castle, Sheila Statlender, Jayme Kulesz, Brenda Boleyn, Robin Lemieux, Karen Gaudian, Maggie Shaw Met Blue, Time for Lyme, Gov Patrick & all the state reps!
[ 07-01-2010, 02:17 PM: Message edited by: Lymelighter ]
Posts: 1010 | From Mars | Registered: Feb 2004
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bcb1200
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Congrats guys. Great news and thanks for organizing. I wrote in along with many friends and family members!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Lymelighter
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Congratulations and thanks to those who had a part in getting this accomplished! This news is awesome!
Posts: 26 | From New England | Registered: Mar 2010
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METALLlC BLUE
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Now we need to work on an Insurance Bill to protect patients who need long term antibiotic therapy paid for. These insurance companies shouldn't be able to turn people away for the same reason or physicians shouldn't be brought before state medical boards.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Lymelighter
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posted
Needless to say, we also need more LLMDS in Ma who will diagnose & treat coinfections!
Posts: 1010 | From Mars | Registered: Feb 2004
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Yay!! Posts: 472 | From New Jersey | Registered: Dec 2007
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METALLlC BLUE
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TIME TO GET OUR HEALTHCARE PROVIDERS INVOLVED IN THE ILADS TRAINING PROGRAM
I think we should all start recommending that our primary care doctors and other professionals we interact with regarding our health should look into taking the ILADS training. I believe they are paid for their time and receive a great deal of support.
Here is the link to print out information or to direct your physician.
If we can get more of our doctors involved while also printing out the law demonstrating that it's now safe for physicians to treat the disease, they may be more inclined.
posted
That is great news. I used to live in MA (where I got a tick bite and was infected) and went through the runaround for years without any help. Now I moved to Texas where they are even less Lyme friendly. It's a step in the right direction for MA to pass a bill like this and though I don't support Gov Patrick at all, I do applaud this signing.
Still though, there is a lot of work to be done. This is only a very small step in the right direction, what we really need is some major research, which is seriously lacking in the field of Lyme disease. Once we get there, the medical community will consider lyme what it truly is: a major illness that deserves considerable attention.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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