CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
UP*)!*)!)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sometimesdilly
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posted
HEAVE-HO, uppity-UP UP UP......
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lou4656
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posted
Keeping my fingers crossed after contacting the Senators.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
These calls are soooo important. The thought of letting those fraudulent IDSA guidelines become the only standard of care ina major state is too much to bear. We chronic Lyme disease patients will be defined out of existence.
These calls take a surprisingly short time. I made the bulk of them while watching American Idol with the sound turned down low. Please all tonight or tomorrow. If you get a machine leave your message with your name and phone number. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks all for responding and for bumping the post. We are working outselves simple here.. trying to beat the bull down to an acceptable level.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
i already did my rep
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I just called the first list. Easy to do, left messages for some that had recordings on.
Senator Lenett's office confirmed that he is voting NO!!!!. He is district 19/Montgomery County. His staff said the are getting a lot of calls and read all the emails that have been sent!!!
Are there members of this sub-committee for each state? I will keep calling if so.
Lymedesign
Posts: 263 | From Georgia | Registered: Feb 2006
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lou4656
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posted
The ramifications if this bill passes are quite scary. It puts LLMDs and lyme patients in a very bad place.
I live in Maryland, and am praying that our Senators listen and vote NO!!
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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valymemom
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posted
Word is that each senator is receiving many, many calls so keep calling. I spoke and gave my name and address to a number of staff members who requested it.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Update-
Just spent the afternoon contacting all of the Senate Committee members offices and getting the latest update.
All but one office admitted to getting LOTS of calls and emails!
In a committee where I thought we had NO hope.. it looks like we are making progress!!!
Thanks to YOUR efforts!!!
Good job everyone!!! Keep up the good work!
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The first Senator (Colburn) below has drawn up and may try to submit an amendment that was proposed by a couple of members of one of the newer Maryland groups, who seem to want to do things a different way for whatever reason and not work with us???
Unfortunately, the amendment they just proposed is not the same as the unanimously suported amendment originally proposed by all the other groups and is NOT, in mine and others opinions, in the best interest of patients or physicians!!!
Please let the Senator know we do NOT want any amendments, as they are, at best, a lousy compromise that will still mandate the IDSA guidelines be sent to all health care professionals in the state!!!!
The bill has other flaws that this amendment doesn't address... sooooooooooo.....
Tell the Senator, NO amendments- KILL THE BILL.. and THAT will fix the problem!!!!
RICHARD F. COLBURN Republican, District 37, Caroline, Dorchester, Talbot & Wicomico Counties
(410) 841-3590, (301) 858-3590
1-800-492-7122, ext. 3590 (toll free)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
The following Senators have not decided either way how they will vote and/or their staff doesn't know how they plan to vote right now. I am waiting to hear back. Until then... let's let them know we aren't going away!!!
Some sound in our favor but I don't want to say either way until I get the official word.
Please keep calling and writing these Senators.. and add in the line- NO AMENDMENTS in the event the one Senator wants to mess with the bill and try to "fix" it for us!
By the way.... The last time a Lyme bill was "fixed" by this committee it looked worse than something the cat drug in.
Tell everyone NO AMENDMENTS!!! KILL THE BILL!!!
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This Senator is a Hopkins doctor. A patient reported that his office told them their opinion doesn't count because they are not in Maryland.
In MY opinion, when ticks and idiots stop at state borders... THEN we will too.
ANDREW P. HARRIS Republican, District 7, Baltimore County & Harford County
This Senator pointed out in the hearing for us that NO.. it wasn't just ONE group against the bill.. there were many against it! Word is she seemed pretty ok with our side.. but let's be sure!
JANET GREENIP Republican, District 33, Anne Arundel County
Please note- the above opinions are my own from the input I've gotten from the offices I've spoken with and the patients- LOTS of them- I've heard back from about their interactions.
posted
Getting pretty confused about the amendment situation. And why does all this seem to happen at the dead last minute of the session? Lyme last is traditional apparently. Aggravating ain't the word for it.
With Hopkins and NIH in that state, the chances of getting good legislation seem pretty dim. No legislation might be better?
Tiresome that once again the troops are not all marching in the same direction. If bad legislation is passed, the responsible parties should be made public. This affects a lot of lives. Need to get it right. What is so hard about coordinated efforts?
Posts: 8430 | From Not available | Registered: Oct 2000
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valymemom
Frequent Contributor (1K+ posts)
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posted
Thanks for the update, Tincup. Are you in Annapolis again?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Please get those calls and follow-up calls made! This is a three fire-engine truck alarm!
And thanks for those already made!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
After speaking to several offices today... I am hearing about how many calls they are getting.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I had a hard time finding Pat's speech.. so I am posting it here for others to read.
Madam Chairwoman (Senator Conway) and Committee Members,
Thank you for this opportunity to testify today.
All that glitters is not gold, and if Shakespeare were here today, he would agree that adage applies to the well-intentioned HB 836. The appealing title, Public Health- Lyme Disease - Public Awareness, belies the danger lurking in the language--a danger which threatens all Maryland residents--those with and without Lyme disease and the doctors treating Lyme disease.
The problem with the bill lies in its language which mandates distribution of materials to health care providers about Lyme disease ``including the latest consensus guidelines for diagnosis and treatment of Lyme disease. (A2 (IV) lines 22, 23)
That language alludes to the Infectious Diseases Society of America (IDSA) guidelines which do not recommend doctor discretion in the diagnosis of Lyme disease, do not recommend long-term treatment, do not recommend whole classes of antibiotics for treatment, and even do not recommend alternative treatment & supplements for Lyme disease.
These guidelines will:
* result in patients being denied treatment for Lyme disease
* result in patients being denied alternative treatment for Lyme disease
* limit doctor discretion in diagnosing Lyme disease
* result in more chronic Lyme disease and
* result in more costs to the State in disability & education due to the resultant increase in Chronic Lyme Disease.
Yet the bill mandates that the Maryland Dept. of Health & Mental Hygiene (DHMH) shall distribute these very same restrictive IDSA guidelines--guidelines which you probably are unaware--are currently under investigation by the Attorney General of Connecticut, who has served the IDSA itself with a Civil Investigative Demand (subpoena), citing possible exclusionary conduct and monopolistic practices in the guidelines' development process as a basis for his action.
And the bill includes $1,334,100 of State money to distribute guidelines which may be in violation of antitrust law.
No governmental body wants to find itself in the shameful and embarrassing position of creating a law which not only harms its populace but which mandate guidelines to be distributed that may be in violation of the anti trust laws of the United States.
I am here today to provide this necessary background for you to make a decision that will be beneficial to this legislature and to Maryland residents.
The national LDA and the Maryland Lyme disease groups are opposed to HB 836. The consequences to all could be devastating, especially to age group 5-9, our children, who run the highest risk of acquiring Lyme disease.
Doctors would not be able to diagnose using their clinical discretion and many children would get missed, resulting in the tragedy of chronic disease and costing the child his/her entire childhood.
My daughter was 11 when she was diagnosed, and she missed most of her middle and high school. A doctor here in Maryland helped her to break a three-year cycle of temporal lobe seizures due to Lyme.
With years of long-term and alternative treatment, not possible under these guidelines, she was able to graduate Phi Beta Kappa and with honors from Johns Hopkins University.
That doctor today no longer treats Lyme patients due to the controversy surrounding the disease. How many more will no longer treat if this bill becomes law?
Vote for patients by voting against this bill today.
Testimony of Patricia V. Smith HB 836 President, Lyme Disease Association, Inc. April 4, 2007
Education, Health and Environmental Affairs Committee Senator Joan Carter Conway, Chair Roy P. Dyson, V. Chair
valymemom
Frequent Contributor (1K+ posts)
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posted
Tincup
Thanks for posting this; I could not find it either. When will we hear if the bill was voted down in committee?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So far it isn't "on the list" to be voted on. That is good news I think.. but then again it could be added at any time!!!
I keep calling to check the status.. and as soon as I hear.. I will let everyone know.
From what I understand, if it isn't added to the list.. it would shrivel up and die on its own. If it is added to the list... there are two outcomes possible... or three.
1. It could be passed out of committee with a favorable vote. If that happens.. then the other Senators get to vote on it and pass it or not.
2. It could be voted "unfavorable". In that case it would go out of committee but others wouldn't vote on it and it would die.
3. It passes out of committee with the stupid amendments- that we DON'T want- grrrrrrrrrrrrrrr... and voted on.
This is what I have learned from talking with the offices.. so if I am mistaken it is because I don't know all the options.. only what I've been told.
posted
Legislature adjourns for the year on April 9, according to their website.
Posts: 8430 | From Not available | Registered: Oct 2000
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lou4656
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Sorry Tincup -- I wanted to send you a PM, but just couldn't figure out how to do it.
Anyway, got the message from NatCapLyme Support Group, and I have sent a 2nd e-mail to all the Maryland Senators.
My fingers are STILL crossed.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Great!!!
Or is it great googa mooga!!!
Whatever!!!
Glad you all are doing this!!! WONDERFUL to have some help from our friends!!!
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