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» LymeNet Flash » Questions and Discussion » Medical Questions » Massachusetts: Are We Happy Yet? YES! (Page 1)

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Author Topic: Massachusetts: Are We Happy Yet? YES!
METALLlC BLUE
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The Massachusetts Lyme Physician Protection Amendment: So What Finally Happened? It PASSED! It is now law! Read all about it on page two as well as this posting below

Final Update: We in Massachusetts began this quest long before 2009, but this time we truly were not going to take it anymore. This was it. It stopped with us this year! A year ago, after la compassionate physician from the town of Wellesley was forced to abandon her practice and her patients we all just lost our minds. We got together and said "never again." We did a lot of work together. Some special individuals involved are listed in an article on page 2, but in my eyes all of you who made a call, wrote letters, talked to doctors, neighbors, or put up ribbons did a fantastic job. Anyone who politically became active in their support groups as well as individuals in getting politicians moving, or working side by side with them, was extremely helpful. Thank you to all who started support groups -- all of this has made this possible. As of today, we all have completed the primary task that this thread originally addressed and so this thread will die a happy death.

Govenor Patrick has signed our bill into law so go celebrate! Thank each other, smile, be grateful, we are now one step closer to Massachusetts being Lyme Friendly. Don't expect immediate miracles, we've still got resistance and adversity to face for the next upcoming battles. But my battle, is over for now. I'm going home (emotionally)

I'll give myself a tiny little credit here: My goal - when we began -- was only to cheer lead by producing some initial thrust via motivation, and talk occasionally with those who had the ability to transform these ideas, feelings, and motivational messages into tangible results. Thankfully I found out others had already been doing some major work. I knew I wouldn't have the staying energy though, and that is why I'm so happy that everyone else kept passing their work along this assembly line of rage and anger that we formed. We used it as fuel! Of course it was green friendly energy fuel.

You all have my deepest sincerest appreciation, so Thank you so much!

If anyone is interested in reading the progress we made through the process, read the entire thread, it'll show you how we passed the baton around.

------

Hello everyone. For those that don't know me, I'm Michael. I'm one of the self-appointed (in my own mind anyway) managers of one of many Lyme Disease lists on the internet.

I'm the goofball you e-mail when you need help finding a doctor, or want to report -- or receive reports -- on health care providers.

Yes,... yes, I know I make you jump through hoops just to get the doctors middle initial, never mind phone numbers and reports; but what I'm going to talk about now isn't goofy and it's not me who is holding the hoop this time around but I'm still going to ask you to jump and meet an immense challenge currently happening.

Let me ask you some questions before I begin.

  • How difficult has it been for you to receive antibiotic therapy and the care of a competent, kind, aggressive, yet consistent health care provider for your illness in the state of Massachusetts?
  • Are you sicker as a result? Family, friends? Anyone else sick and having trouble receiving care because your health care provider can't accept insurance and thus you can't afford the visits, follow-ups and supplemental therapies?
  • How about this: Are you having trouble receiving adequate care because your physician -- who does accept insurance -- has to treat you conservatively -- even neglecting to run adequate testing, ignoring co-infections and other issues in order to stay below the radar?
  • How many hours away is your physician who manages your PICC line?
  • Are visits to the ER a little scary when some Infectious Disease specialist is poking thru your charts and telling you how incompetent your doctor is for putting you on these "dangerous" antibiotics, and that you don't have Lyme, your tests are negative, your bood work is clear, and any tests which are abnormal are false positives or interpreted erroneously by another health care provider (s). Scary, right? It's Chronic Fatigue Syndrome, it's Fibromyalgia, and your doctor is taking you for a ride spending his time on his yacht drinking mai tai while you lay in this bed because you fell for the quacks "Chronic Lyme" diagnosis.

That's a medical question,... a lot of them. If you're angry, you're going to be really angry in a moment. The Boston Medical Board has decided to go after one of the newest, brightest up-and-coming Lyme and associated disease specialists.

This physician has just been forced not less than a week ago, to drop all therapeutic care related to the treatment of Lyme Disease.

Nearly 300 patients are now scrambling to find a new physician to manage their care. They're parents, children, friends, brothers, sisters, wives, husbands, ....loved ones.

Now, I'm a little angry and I'd like to know who would be willing to stand up and help support not only this current doctor, but all the other physicians in the state of Massachusetts who are being suppressed from treating Lyme Disease and associated illness in a manner befitting the the doctors training and experience.

It is our doctors vs, the consultant sitting in a corner office of an Insurance Company who just stamped denied on your physician's forehead.

It goes deeper than insurance companies, it's a war. It is literally a war, and our lives are literally on the line. People are dying. Do you understand?

We must take up this cause. The first plan of attack is understanding our purpose. I believe that in Massachusetts we need to immediately shock and awe our representatives, the Massachusetts Department Of Health, and it's members.

We must organize, we must not reinvent the wheel and attempt to do this alone as a rag tag group. We must follow our advoacy leaders and follow the legal course of other Lyme Disease activists who assisted in Rhodes Island and now (hopefully soon) Connecticut in creating a law that will protect our physicians from being dragged before medical boards because they're attempting to help save our lives.

They need to be protected from insurance companies, and a patient's care should not be decided in that corner office by that consultant -- who by the way -- wrote the very guidelines that claim you should be well after an arbitrary 2-4 week course of antibiotic therapy.

This must end now. They are the enemy. Every movement that ever "moved" required people like us to stand up and face an adversary -- whether individual or institutional.

To win, we must tell the truth. The truth is that we have a right to receive medical care that really "is" based on the best available science, and the science presently says "I don't know" -- so why should we be treated as though someone "dose know?"

Who is with me? If you are, join the MassachusettsLyme on Yahoo Groups. Find your niche, whether it's making phone calls, creating ideas, arranging meeting places for patients to come together in person to talk about this, or simply passing along this message to every other patient you know.

[ 07-01-2010, 01:39 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.

E-mail: sbauzys@comcast.net

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Tincup
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Hey MB...

A couple of notes and questions here if you don't mind.

Did anyone have direct contact with the doctor and did the doctor ask anyone to do these things?

If not, efforts could be hurting rather than helping. And I know that is not your intention or anyone elses.

PLEASE check that out and only ask people to do what the doctor and their lawyer requests.

In the past, patients jumping the gun without a clear cut plan and direction from the doctor has compromised our doctors ... and I KNOW none of us want that to happen.

As for legislation....

The RI bill... Dr. Jones feels it should never have been passed.

Although it looks good on the surface, it has denied kids treatment more than it has helped them. So before anyone decides to try (with good intentions- bless their hearts) to fix things... please be sure you have a solid and well-backed plan in place first.

The CT bill was introduced by legislators... and the activists were NOT involved until it was dumped in their laps.

It is a HUGE struggle at this point for CT... not one they need or wanted... but one they are having to deal with to try to protect patients. Many volunteers are tied up on that fiasco and resources are thin.

There is also the IDSA panel stuff in progress and other big things behind the scenes too.

Also... there is a bill in the NatCap and MD area turing sour as we speak. I don't think anyone is working on it.

Just want to share this now rather than later.

Now PLEASE keep up the energy... and kick butt.... for it is much appreciated and admired.

Just please do check out details before folks scatter in all directions and know our resources are limited.

New volunteers are always needed.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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Still, isn't the only way to get protection for physicians to treat Lyme is to get a bill through?

California has protective legislation. I know it's a lot of work, but what are the options?

What about taking a look at California's legislation and seeing if its language could be used for other state protection bills?

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bettyg
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robin,

take a look at the maryland bill tc posted...something about bill turning south... might be 2 different things; neuro lyme tonight and having harder time making sense of things.

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Tincup
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"Still, isn't the only way to get protection for physicians to treat Lyme is to get a bill through?"

Look at CALDA's legislation. They HAVE done a fantastic job.

Note they first got an advisory committee.. like we will do with our federal bill .. so all states would be actively represented.

But states don't normally have one in place now... so that is a first step.

http://www.lymedisease.org/california/ca_legislation_ldac.html


Here is the bill mention that will cover some of the LLMD's in California... with restrictions of course.

http://www.lymedisease.org/california/ca_legislation_bill592.html

Keep in mind Phyllis and CALDA have worked non-stop in their state to make changes. They have educated legislators and have done a lot by working together to form a strong, respectable group that CAN get things done.

And they have been doing it for years. HARD HARD WORK!!!

They have done such a good job they have the support of patients nationwide. And they have put out more sweat and tears than most have been able to... in order to get 'er done.

Not all states are able to handle this great of a task.

And San Francisco IS a bit different than Bell Buckle Tennessee...

And they have had LLMD's helping that are also top notch.

So there it came together.

And they are a good example of how to do it.

Putting in a bill without having the years of educating and ground work laid is not the same thing.

Sooooo.. when I say it is difficult and can be dangerous.... it really can be.

Keep in mind sometimes, most of the time, state legislators want to put in a bill to help.. and often do so without contacting any patients or groups before hand. Like what we see in CT right now.

That is NOT the optimal setting... and can blow up in patient's faces very easily.

My suggestion..

Rather than straining the few resources each state has... and chancing having a flop or worse... and having us all running around on our own....

If we get the federal bill through.. we will have the Advisory Committee... and oversight... and a voice.. and funding.. and help with clinical trials... and scientific conferences... and the OTHER point of view out there.... etc... making it easier for our LLMD's to treat and others to treat.

There will no longer be the ugly force on top busting everyone's chops.

The CALDA way and the federal bill way is the way to educate and get things going that we ALL need.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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Hey there, TC - thx for your words of wisdom -

Wanted to add that this year's Lyme Disease Advisory Committee meeting in Sacramento was the best one I've seen in the couple years I've gone.

We have ten folks on the committee, including doctors, scientists, vector control district reps, patient advocates, state reps.

Relationships are building, there is greater goodwill, more recognition of people for the work they are doing,

and a greater listening and responsiveness this year to what was suggested to the state to accomplish.

And we are blessed with some very talented people on this committee.

The rest of us listen and then can make brief comments at the end of the day.

So yes to the advisory board - it can really move the state forward in the work of responding to this epidemic.

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Nancy2
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Hey, TC!

Just curious why Dr. J. mentioned that the R.I. Bill should never have been passed? Did he mention to you what he thought were the defects in that bill that caused him to think this way?

From Rhode Island, of course!

Thanks,
Nancy

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FaithhopeNlove
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Yeah, Michael, aka Metallic Blue.

Way to Go! You are the best!

We are sick and tired of our doctors being bullied and blackmailed.

Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

--------------------
But the greatest of these is LOVE

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djf2005
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mike-

i can help

point me in the direction you feel i can be utilized and ill do it.

derek

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

djfemailbox@yahoo.com

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Tracy9
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I am also very interested to know why the RI bill is not felt to be good; please give more information!!!!

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lakes592
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Hi,
I was just on the CALDA webite and saw all the RI has been able to accomplish for Lyme disease patients. Does anyone know how they were able to do it?

I feel like it seems they have laid the groundwork, so if we follow their steps prehaps we could accomplish this in other states. Wondering what steps they took to get this accomplished? If anyone has any ideas?

Thanks,
Ann

--------------------
If you keep doing nothing...nothing changes!

http://www.myspace.com/blonde_101874

--------------------------------------------------------------------------------
Posts: 291 | From NH | Registered: Jan 2009 | IP: Logged |

Tincup
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posted 03-29-2009 11:20 PM
--------------------------------------------------------------------------------
Although the attempt was nobel... all who work to help us should be praised.... but...

With legislation.. all that glitters is not gold.

Foe example... a quote from a letter by LDA.. who helped with the efforts on that bill...

"Dr Charles Ray Jones, Connecticut pediatrician addresses the following to the Rhode Island Commission.

He has treated over 6,000 children with Lyme, three-quarters are well after 3 months to seven years of treatment, averaging nine months to two years.

The remaining one-quarter is still receiving treatment.

"Most of these children have been denied insurance coverage of necessary antibiotic therapy because of .Bill#7032.

It was easier to obtain insurance coverage for antibiotic therapy for Lyme disease patients prior to the bill... Educate. Do not legislate."

```````````````````````````````````````````````

Here is another one...

"Enclosed is a letter of treatment denial for a seven year-old who has a brain SPECT with sever hypoperfusion, Western Blot with specific Lyme bands, and neuropsych testing supporting the Lyme diagnosis.

The law is cited by the insurance company as a basis for denial of coverage despite a letter of medical necessity from the treating pediatrician, as the parents are unable to find pediatric specialists in the mandated areas.

According to the mom, "I've been in contact with assistant Attorney General since the beginning of January. He agrees the law was never intended to be used this way [and] has been in contact with Connecticare over this issue but is not hopeful that anything will change."

`````````````````````````````````````````````````

CT passed something a while back too... but it requires patients to be seen by a board certified ID duck, rheumy or neurologist before they can get more treatment.

Problem is.. how many ID ducks or rheumy's or neuro's WILL treat beyond the minimum?

Heck.. they are the three worst fields to go to if you have Lyme.. with 2 out of the three having written their own guidelines against treating.

Sooooooooooooo... as Dr. Jones said... "Educate before you legislate".

And even then things can go VERY badly... and what you do can destroy lives.. even though you have the best intentions.

My thought is the BEST we can do is to get the federal bill passed. It doesn't change just one rule here or there.. it gives us the ability to have a voice so we can make BIG changes for all over the place.

If we can address the source.. like provided for in the federal bill, the changes will come.

But that is just my opinion.



This is a good read.. if you care to take a look-see.

http://www.lymeinfo.net/ritestimony.html

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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merrygirl
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I am beyond angry at this point! I have a few emails waiting for responses. Hopefully I will find out what to do next...
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NorthboroMass
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Wow - well stated Metallic Michael.

I think there is a lot going

on behind the scenes on both sides. Unfortunately

like everything, it involves $$$ and not the

patients best interests. We need a good

lawyer that has Lyme and understands the pains

and frustrations and has many GOOD lawyer friends

to bring one Insurance Co. to its knees with the

aid of Science by attaining a huge settlement.

Alternatively we need pharmaceutical companies to

invent a cure or sure-fire remission remedy to

allow them to make big $$$ and in turn get behind

the long term treatment for those thousands of

individuals that need it.

I will always find it fascinating why there aren't

more science minded individual doing more studies

all over the world to get to the bottom of this

dreaded infection but my Feeling is that in 5-10

years we will have a cure and an accurate test for

Lyme and the Co's

--------------------
NorthboroMass

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Andromeda13
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Hi Metallic, Michael,

I read your post full of fire, and thought yes, this is the way to go, then comes the let's be careful advice which kind of puts that fire down a little.
Although I'm sure the caution is based on the experience of truly good activists, I feel that somehow there should be a way of creating more attention, to show the legislators and politicians that there is a seething crowd behind the careful leaders.

When Union leaders go to their meetings with the bosses to negotiate for better wages or safer working conditions, they have to have the backing of the members, who are there with banners and threats to stop work. Then the Union leaders have some negotiating power.

Do we have that in the Lyme world yet? I guess not. Or was it once there, but now it's changed and we've all learned to be polite and diplomatic?

How did the AIDS patients do what they did 25 or 20 years ago? I will have to look up some history.

Were they allowed more media attention because the HIV virus was much more contagious than our bug and everyone was more frightened?

Or was it the huge input of money from the Gay community, which was called the "pink pound" here in the UK?

What will it take until there is some truth in this terrible situation? Will every family in the country be infected before those in control do the right thing?

Best wishes for the fight, the battle, the war, because it really is a war like you say.

Andromeda

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Tracy9
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I understand the concerns around the doctor's safety.

If we do nothing, we are colluding with the very people who have just caused 300 people to very possibly be denied treatment and/or cure.

If we do something, we are showing intolerance to this action.

I'm thinking we don't have to "name" the doctor, but why can't we contact the media about this ATROCITY, particularly media who have been doing Lyme related pieces lately, like Chronicle?

Why can't we write all the powers that be without naming her name?

I can't in good conscience do nothing, it feels very wrong.

What was that thing that Margaret Mead said? I think it SO applies right here and right now.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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Do we all understand that there are patients with PICC lines in their arms and no where to go? I personally was at DR. L's office yesterday listening to her talk about how upsetting this is, and how she has NO WHERE to send them.

It isn't just "oh well, gotta find a new doctor." It's hundreds of people who are going to backslide, get worse, maybe relapse to the point of no return, have PICC lines with no IV meds and no one to order nursing care for them....

This is a crisis. Yesterday she told me the only doctors she felt comfortable referring her 300 patients to have already stopped accepting patients.

I gave her the name and number of my doctor I am returning to. He is great. I saw him today and told him of the situation. Guess what he said?

He will only take a very few patients. That's it. And I happen to know he is pretty much the only one she is referring patients to.

Sick, sick people, our friends, our neighbors, our community....they are SCREWED.

There is no way I can possibly in good conscience sit here and do nothing about this.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tincup
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Nancy2...

Good question.. thanks for catching me on that too... as I accidently mislead you.

Dr. Jones was speaking in Rhode Island at the time... but his actual comment was about a different bill set out to help patients but which didn't.. the one in CT... and I am sorry I don't remember the number on that bill.

But he did say what I quoted... and here is the information regarding that statement.

Again, sorry to misstate/mistake the RI vs. CT example.

[Big Grin]

Here are the comments:

http://www.lymeinfo.net/ritestimony.html

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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seekhelp
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What a very sad situation. So unfair to patients. [Frown] I don't know how the medical communuity can live with themselves harming people like this.
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Tincup
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Just so we can clear this up...

There is possibly no one as angry as I am about this situation.

I am NOT trying to curb anyone's anger or stop them from letting their feelings be known.

I am only suggesting to be sure you are on the right track FIRST, and...

Be sure you have planned out a detailed plan that will help rather than hurt the doctor and the patients.

Has anyone learned the answer to my earlier question?

"Did anyone have direct contact with the doctor and did the doctor ask anyone to do these things?"

Once that is done a plan can be in the beginning stages.

Please advise.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Nancy2
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T.C........

Thank you for clearing that up for me. No apology needed!

I was actually there for all of that testimony, and would have gone to a State Rep for help if I needed to if some thing in it was misconstrued somehow. I practically know that bill by heart, and thought somehow I had missed something.

Now if we could just get Massachusetts straightened out!

Be well, ok Tinny?
Nancy

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KS
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I'm more than willing and happy to help. I do a great deal of advocacy work on my own but agree we need to work together......
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Capa
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This is a sad and appalling situation. I'm glad that I have found a lesser-known LLMD in the northeast who I am happy with. It is sad that we have to feel as though if we don't keep our LLMDs to ourselves then we'll risk losing them completely.

--------------------
Lisa D

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nomoremuscles
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I'm very limited, stuck inside the house, but if there is anything I could do to help please let me know.
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merrygirl
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I spoke with the doctor in question, and she does not want our help.
She was very appreciative though. She thinks things will settle down.

lets see what else we can do


thoughts:?

Melissa

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bettyg
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quote:
Originally posted by merrygirl:

I spoke with the doctor in question, and she does NOTt want our help. ******************************************

She was very appreciative though. She thinks things will settle down.

lets see what else we can do; thoughts:? Melissa

melissa, i wanted to make sure we all saw this important point .... does NOT want help for now!!
******************************************************

i'll leave this to you mass. folks, but 1 more quick update....


DR. R. is now CLOSED and NOT taking new patients. People may try back in May sometime.... sent to me by someone in your state this afternoon!!

bettyg.... [Roll Eyes]

i've been updating sending llmd info galore this afternoon with all the changes going on in your state!

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Tincup
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Merrygirl said...

"I spoke with the doctor in question, and she does not want our help."

Thanks for getting that straightened out for everyone, MG. Much appreciated.

Sooooooooooooooo....

While waiting for orders from MB on what else might be done...

Why not call your Congressman and ask them to sign on to COSPONSOR the federal bill (HR 1179- Lyme disease bill)? This will help us all.

Here is the link with all the numbers for Mass Congressional leaders. Only call HOUSE members.

You can call after hours and leave a message. Just be sure to give them your name, address and phone number.

http://www.cwork.com/index.php?option=com_content&view=article&id=96&Itemid=105

So far Mass only has 1 Congressional person signed on. To see the list... click here.

http://www.cwork.com/index.php?option=com_content&view=article&id=125&Itemid=112

Now, what are the plans for this situation?

I can't take on too much right now ... too much already going on (IDSA, Congressional bill, insurance, etc) ... and I'd have a devil of a time trying to understand the Mass accents (hehe) ....

But once a plan is finalized and approved, I'd be glad to pitch in if I can.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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trishee
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I will dr. L tomorrow and tell her we will not include her name if she does not want us to. I plan on letting her know we have to fight for ourselves by getting legislation to keep the Board away from our Doctors. Hopefully she can treat another day. For now we must fight for our lives. we are an army. we are a community a union and we are sick and need help now. I feel we need to start writting letters now. Pick a news channel and everyone email what is happening and what we are trying to do. Be sure they know there are tens of thousands of sick people being denied medication and help.
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Cold Feet
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So very sad to see patients begging to be treated -- being required to organize like a union to lobby for the right to be treated with ANY kind of medical therapy.

This is unreal.

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Tincup
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I know some of you don't want my thoughts on this... but some do.

So in the event I am annoying anyone.. or you think I am trying to dash your spirits (I am not).. please just scroll on by.

Thanks.

[Big Grin]

Now... if you are still with me here and care....

The problem is that I see your frustration and your anger and I've been there and am STILL there. MANY MANY others have been there too in the past and are still there today.

Those still hanging in to try to help us all have a few years on us with experience.... and by working with many folks over the years we may not know what will work the best...

But through experience we do know what hasn't worked and where NOT to step in order to avoid a pile of you-know-what.

In MY opinion, watching folks spend energy running down a path that will lead them to a brick wall or get them, their families and/or their doctors in trouble...

And not offering up some sort of help to prevent hitting that brick wall is like watching someone walk through a grassy field in the late spring and not warning them about ticks.

I feel I would be remiss if I ignored either situation.

Sooooooooo.. not to pick on anyone at all.. just using an example.

trish said... "I feel we need to start writting letters now. Pick a news channel and everyone email what is happening and what we are trying to do."

Here are a few thoughts...

1. Most Lyme patients that are sick have a difficult time grasping the situation at hand enough to be able to sit down and think up and type up a letter that would be appropriate and useful, and not hurt the cause or their situation in the meantime.

For that reason, laying out a plan of action in SIMPLE language is important. You also need to gain the trust of those you want to help you. That takes time. And...

Changing direction in mid-stream is hard on people. Doing that doesn't give them much confidence that the back ground work has been done and that folks are really organized and know what they are doing.

So, having simple instructions and sample letters to help patients help you with your efforts is a good thing.

Having lists of who to call, the phone numbers, the email addresses, etc. will also help patients.

`````````````````````````````````````````````````

2. We should never assume a doctor or patient or anyone wants our help... even if WE think they need it.

If you call papers and the media.. for example... and want them to do "something"... one of the first things they will ask is what is the problem and where is this happening?

If the doctor doesn't WANT you to interfere ... and doesn't want your help.... you need to respect that.

So what WILL you tell the reporter in this case?

Example- Maryland Lyme patients wanted doctor protection.

Well, when we tried to get it (a bill was submitted FOR us with this in it- we had no say in the matter)....

EVERYONE had the come back line that NO doctors in Maryland had ever been bothered... so why should they make a law or rule to stop what isn't happening?

They didn't care that it was happening in other places. Not at all. They just knew there was no need to write a law in Maryland for it.... or a law to say something like the sun MUST come up tomorrow, when it always has.

Good point. The legislators learned from that experience (and they were seasoned legislators too)... as did those trying to be supportive.

```````````````````````````````````````````

trishee said.. and dear trishee I am NOT slamming on you... just using these quotes as examples.

"Be sure they know there are tens of thousands of sick people being denied medication and help."

Before you tell someone that.. especially the media and officials... you better be able to prove it.

The MINUTE you say something untrue... you are done. They will gladly throw the baby out with the bath water and you will never be able to appear credible again.

And if you think they might miss it ... they won't. And if they were to miss it... the IDSA is right there to point it out for you.

Now.. there are 18,000 reported cases of Lyme from Mass. since reporting began.

Official figures say 10-40 percent of people still have symptoms following a short course treatment.

That means about 1,800 to about 7,200 may still have symptoms and MAY need additional treatment for Lyme IF it is Lyme and not a coinfection.

Of them.. and let's say it is 5,000 just to make an average and make it easy for me here...

30 percent over the years were treated early or were treated again and are now better.

10 percent have moved out of state or passed away (natural or otherwise) over the past 30 years.

10 percent don't know it is Lyme because they were misdiagnosed.

OK.

That leaves 50 percent who have Lyme.. or about 2,500 people.

It is possible many of them are being treated and are not being denied... we don't know.

So, to say that "tens of thousands" in your state are "being denied medication and help"... well it is actually only about 2,500 people IF we could prove it to be true... and we can't.

So the point is you must educate yourself enough to be able to pop up with the right answers on demand and NOT give them a false lead.

If one person with the best of intentions blows it.. the next one in line may never get a chance to try. We've seen that happen. More closed doors we don't need.

````````````````````````````````````````````````
I am hoping by spending so much time here explaining this that maybe folks will see how much back ground work, thought, planning, preparation, calls, etc go into trying to get us help.

I'll also point out it takes a LARGE team nationwide with a lot of experience and connections to get us moving in the right direction.

And.. without all patients pitching in... and good leaders in place... it is nearly impossible to get things done.

Even with all that.. the process is slow because that is politics.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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trishee
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Tincup said: process is slow because that is politics.

So lets get our butts in gear. Lets not assume we are going to do this wrong. Lets start the fight for our lives and start with the truth when we are asked a question. Rules will be made not to mention doctors names just that we are fighting for our doctors right to treat lyme.
With the estimated hundreds of thousands with this disese in this country WE must not sit idly by. We're on the right track lets keep moving forward. Learn from those who have gone before us, but be innovative in our ways. Our letters will be truth and figures accurate. Don't take no for an answer and let anyone intimidate us.
I'm ready!

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Tincup
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It took a good while to write the above message. In the meantime the posts above it were placed on here.. which I had not seen till now.

To respond...

Nice ideas. Very admirable. looks like you are starting to put things together. GOOD FOR YOU!

One question. With this new team of action people... what is your goal? What are you actually trying to accomplish?

I saw your recruitment goal listed... but not a goal for the base you are trying to build.

MB said.. "Tin Cup, what is your primary skill -- your strongest talent?"

Well it sure isn't keeping my mouth shut! HA!

As I mentioned earlier I'd be happy to help anyone moving in a positive direction. Always.

As you know we have tons of projects ongoing at this time .. IDSA panel, letter writing, articles, fund raising, May is Lyme Awareness Month, state wide programs, Proclamations, CT bill, insurance issues, Congressional bill, stuff behind the scenes, editing, etc..

But once you all have a plan in Mass that is finalized and approved, I'd be glad to pitch in if I can. Just let me know if I can write a letter or make a call for your effort ... and if all is good.. I would be pleased to help.

MB said... "We have four primary group leaders right now. Tracy will be setting up a private discussion forum on a different site where we -- the leaders -- will collaborate in teams."

Sounds great. Teams are important.

May I suggest for your own protection?

Set up an email list for privacy and communications. Big ears listen here and may already be making plans to cut you off at the pass.

And thank you for taking steps to help us all.

Three thumbs up!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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trishee
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Tincup said:.... What is your goal?
Our goal here is to adopt legislation that will enable our LLMD's to treat lyme beyond current guidelines without fear or threat from medical board.
Eventually getting a spot light on HR 1179 and finding congressional leaders to sign on.

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lou
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This doctor does not want our help because she thinks public exposure will be bad for her reputation and practice. Her name would be used, she would become a martyr, possibly smeared in newspapers who tend to always assume guilt in these situations.

However, this leaves the patients once again trying to find care. Which is just exactly what the state medical board intends to happen. They want to shut down medical care for lyme disease beyond three weeks.

So, the idea that this will blow over is wrong. The campaign to wipe out lyme treating doctors has been going on for at least 15 years with no signs of abating.

My feeling is that Mass lyme patients have got to fight this, even if the doctor does not "want help." Then leave her out. Just tell the legislators, etc that sick people cannot get adequate care, that the outcomes of current treatment are not good for late diagnosed patients, that this is causing great physical and financial distress.

And there are some longtime lyme activists in the state who should be consulted.

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METALLlC BLUE
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Our Goal

Trish explained what our goal is. We have many subgoals on the road to this destination that will appear but need to be established as information comes in. Our mission statement will be designed around the core concepts that other advocates (including Tin Cup) have recognized as fundamental and strong supports. We want to avoid the "pot-holes" on the road to our destination.

So our main goal: "Our goal here is to adopt legislation that will enable our LLMD's to treat lyme beyond current guidelines without fear or threat from the state medical board. Eventually getting a spot light on HR 1179 and finding congressional leaders to sign on."

This goal will likely change a little. I'd like to expand on the shortcomings of the Rhode Island and Connecticut issues in their bills and create a stronger bill also preventing insurance companies from denying claims when physician "do" have the ability to treat beyond the current IDSA standards.

Regional groups in Massachusetts are also working on projects, and I'd like to unite all of Massachusetts. I want to know what others are doing. I want to be flexible and know where we can help "them" if they have already paved some roads. I want their input and ideas.

Advocates Have Reported

Reports have come in regarding how to politically accomplish our final goal, and it is "not" by writing massive amounts of letters or contacting the media immediately. The best way to current get involved is by going to the Yahoo MassachusettsLyme Group and signing in. Contact your Lyme Disease Advocacy and Activist groups:

  • Lower Cape Lyme Disease Support Group
  • Lyme & Tick-Borne Disease Information & Support
  • South Shore Lyme Support
  • Boston Area TBD
  • Ticked Off

Go here to actually get information on each group:

http://www.lymenet.org/SupportGroups/UnitedStates/Massachusetts/

[ 05-04-2009, 04:13 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.

E-mail: sbauzys@comcast.net

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tpap1006
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michael, I would like to help, later. I'm having quite an alarming flare up now. when i get some clarity i will do what i can.
Trace

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merrygirl
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KS would be great at the science gathering, not to volunteer her or anything!!!!!!

also creativeguy would be very useful with the written word. I would love to see him involved.

Tincup your advice is great and much needed. thank you.

melissa

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lou
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Some of the information gathering has already been done, so try to contact other people who can help, so as to avoid reinventing the wheel.
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FaithhopeNlove
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It's been a week and a half and I'm still mad!

: )

Thank God we have eachother!

--------------------
But the greatest of these is LOVE

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METALLlC BLUE
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Edit

It's 05-04-09 presently and I have cleaned up this thread and deleted posts that are no longer relevant. This post to let everyone know that knowledge has evolved since I wrote the original post. I have learned more and can bring you up to speed quickly. Here is what is presently known by me:

  • 1: The individual LLMD will not be involved -- in our aggressive campaign. That physician has been contacted and has made it very clear. No involvement.
    -
  • 2: We do in-fact have a number of supports in place to direct patients who want to be involved in this campaign. The MassachusettsLyme Yahoo group will be our current congregation spot.
    -
  • 3: The teams that were created originally in this thread have made progress. We originally began with media, political, uniting with regional groups, and creating an underlying structure of order for all of us to work within. This has been done and is now simplified.
    -
  • 4: There have been hearings in Massachusetts in the last few years (2005 I believe). Advocacy groups like The MA Lyme Disease Coalition, and the Cape Cod Lyme Task Force have invested a great deal of time and effort. Others have been heavily involved as well. They have "good" ties presently with the Massachusetts Department Of Public Health, which was a concern to all of us when I first introduced this thread on Lymenet last week.
    -
  • 5: Rep. Jennifer Callahan of Worcester has introduced a bill -- again -- as House Docket # 1608. It is almost identical to last years bill 4201.
    -
  • 6: The Lyme Disease Task force has lost State Funding this year. We must find a way to support them financially.
    -
  • 7: An individual from the Cape Cod LDA chapter sent me these comments -- which should enrage you further. "At the hearings in Boston several years ago, we had broad support from around the state. At the time we had a bill which would protect doctors who treated Lyme as they saw fit, and another which would force insurance to pay for such treatment. This is the only way to get what we deserve as patients, and I am hopeful that we can eventually make it happen. The IDSA put great pressure on these legislators at the time, but many signed on to these bills in spite of it.

If you're angry and want to help: Join this group:

http://www.lymenet.org/SupportGroups/UnitedStates/Massachusetts/

It's time to rise again.

[ 05-04-2009, 04:15 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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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Latest update: I'm breaking this up into three separate posts for easier consumption. Hope your brain doesn't implode. Feel free to post this on other forums.

-------------------------------------------FIRST THREAD OF THREE-------------------------------------

I posted this on the MassachusettsLyme Yahoo Group. This is where we're congregating. When you arrive there you'll be working directly with people within your own state (obviously) who are dealing with the same abuses and abandonment. We're going to make this happen. Are you still with me?

First Things First:

The primary action to take is to visit either the MassachusettsLyme group -- if you're a Massachusetts resident, or visit the thread on Lymenet, if you're from other states and looking to connect to us for additional assistance. Feel free to post this around the internet, that will help.

Action To Take:

The first thing patients need to do is speak with their local support group, and their central state Advocacy group. At present, in Massachusetts, that group appears to be the Cape & Islands Lyme Disease Task Force, which is basically our state Lyme Disease Association as far as I'm aware. Brenda Boleyn is a founding member and co-chair of the task force. The surrounding support groups are currently:

(1) Cape Cod Support Group: Richard Sylver is the group leader. The meetings are held on the third Sunday of the month at the Covenant Church in Brewster on Setucket Rd. from 3:00 to 4:30. To contact him, e-mail:

(2) Lyme & Tick-Borne Disease Information & Support Greater Boston Area (formerly known as: TBD Information & Support, North of Boston)They also have a website: http://www.lymesite.com

Contact: Lauren H, Liz M. and or Kay L. Call (978) 468-6336 to get further information. You may also e-mail one or all of the following addressed for the three people mentioned.

Lauren: j.hefferan@comcast.net,
Liz: elizabethjude@verizon.net.
Kay: b10g7@verizon.net.

(3) South Shore Lyme Support. Melissa Kerins. She can be contacted by E-Mail: southshorelyme@hotmail.com.

(4) Ticked Off for Central Massachusetts: Donna castle, She can be e-mailed at dcastlemom@yahoo.com

(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 roseruze@verizon.net

Second Action:

Tell others to visit the Lymenet thread, or to join MassachusettsLyme Yahoo Group depending on which state they live. The website for the Yahoo Group is: http://www.lymenet.org/SupportGroups/UnitedStates/Massachusetts/

Third Action:

Assist your local support group in working on the issues they already have currently in progress. Here are some which may or may not be in the works -- find out, and pick up your metaphorical shovel and dig into one of these.

  • Support Groups Offline Creating "more" support groups, offline. We've got too few offline and too many online. Western Massachusetts is lacking tremendously across the south west to the northwest. Greenfield, Northampton, and Springfield need groups. If you know of any already in place, let me know -- but I've not come across any.
    -
  • Communicating w/ MA residents:; If you know other residents who suffer from these conditions (or their loved ones), please direct them to this thread. Pass it around. The support groups offer a tangible way to actually get face to face with people and to talk with groups that are already established and can help give you instructions beyond what I'm mentioning.
    -
  • Motivating members: through planning rallies and executing them.
    -
  • Uniting members: Encouraging every MA resident in other support groups on the internet to join our group -- let's bring all who are scattered home.
    -
  • Funding: Fundraisers, Donations, etc: Creating ideas, planning events centered on this. We need it, to pay for a variety of things.
    -
  • Strengthening Political Relationships: (Mass Dept Of Health, District Reps). Working with other support groups and activist groups, we need to build stronger relationships between the general public who deal with Lyme and these people. Your local Rep should be made aware in a nice concise letter of the current bill circulating under JENNIFER M. CALLAHAN. The bill is No bill # yet - below is the bill text with a docket #: HOUSE DOCKET, NO. 1608 FILED ON: 1/13/2009. Her contact information is: http://www.mass.gov/legis/member/jmc1.htm
    -
  • Grassroots: Doctors & Schools: Support groups are encouraged to literally go door to door to educate physicians offices (with their approval) with pamphlets designed by the Lyme Disease Association. The Brochures can be found here: http://lymediseaseassociation.org/Brochures.html

    A brief letter should also be created by your group and given to each doctor explaining why it's necessary. Don't shy away from the debate. We've been polite long enough. Encourage the doctor to consider his or her interest in this issue, in why it's important they know more, not just for their patients but for the physicians own life and family. Educate them both politically and educationally and show them that the science demonstrates persistence, and that treatment durations are arbitrary and thus should be decided individually and clinically. Any support group that does this should coordinate with other local support groups to make sure they are organized and don't send three people to the same office. So, get organized with the other groups.
    -
  • School/Student Education: We need individuals to go forward and provide pamphlets from the LDA -- both politically and educationally. Speak with the principle, start with them, then arrange health care class speeches or speaking within their auditorium. Students and their parents, from all grades need to know somethings. Different grades will require a different approach.


[ 05-15-2009, 08:39 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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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Feel free to post this on other forums.

----------------------------------------SECOND THREAD OF THREE---------------------------------------

Current Massachusetts Bill:

HOUSE DOCKET, NO. 1608 FILED ON: 1/13/2009

The Commonwealth of Massachusetts

PRESENTED BY: Jennifer M. Callahan

To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General Court assembled:

The undersigned legislators and/or citizens respectfully petition for the passage of the accompanying bill: An Act relative to tick borne illnesses.

_______________

PETITION OF:

Name and District/Address:
  • Jennifer M. Callahan: 18th Worcester
  • Robert A. O'Leary
  • Bradford R. Hill 4th Essex
  • Bruce E. Tarr: First Essex and Middlesex
  • Cleon H. Turner: 1st Barnstable
  • Daniel K. Webster: 6th Plymouth
  • Lida E. Harkins: 13th Norfolk
  • Cory Atkins: 14th Middlesex
  • Christine E. Canavan: 10th Plymouth
  • Kay Khan 11th: Middlesex
  • Barbara A. L'Italien: 18th Essex

Resolved,
That a special commission, to consist of: 3 members of the senate, 1 of whom shall be appointed by the senate minority leader; 3 members of the house of representatives, 1 of whom shall be appointed by the house minority leader; the commissioner of the department of public health or his designee; the commissioner of education or his designee; the chancellor of the University of Massachusetts Medical School or his designee; the Dean of the College of Natural Resources and the Environment at the University of Massachusetts Amherst or his designee; the director of the state laboratory institute or his designee; the state epidemiologist or his designee; and 4 members to be appointed by the governor, 1 of whom shall be a representative of the cape and islands Lyme disease task force, 1 of whom shall be a member of the Massachusetts chapter of the international Lyme and associated diseases society, and 2 members who shall be considered experts in the treatment or research of Lyme disease, is hereby established for the purpose of making an investigation and study of Lyme disease including, but not limited to, a review of the costs and benefits associated with: (1) establishing a Massachusetts center for Lyme disease; (2) conducting a Lyme disease public health clinical screening study in high risk regions; (3) developing education materials and training resources for clinical providers and school health personnel for detecting signs and symptom of tick-borne illnesses in school-aged populations; and (4) statewide surveillance and testing for tick-borne diseases in ticks. Said commission shall report to the senate and house of representative the results of its investigation and study, together with drafts of legislation necessary to carry its recommendations into effect, by filing the same with the clerks of the senate and house of representatives, who shall forward the same to the joint committee on public health and the house and senate committees on ways and means by February 1, 2010.

People are encouraged to contact their local district representative to sign on.

Here is the CT bill and the RI bill: We want to duplicate pieces of each.

Connecticut Lyme Disease Bill:

Proposed Bill No. 5625 - January Session, 2009 - LCO No. 869: Referred to Committee on Public Health

Introduced by:

  • REP. FAWCETT, 133rd Dist.
  • REP. GODFREY, 110th Dist.
  • REP. HORNISH, 62nd Dist.
  • REP. LYDDY, 106th Dist.
  • REP. REEVES, 143rd Dist.
  • SEN. MCKINNEY, 28th Dist.
  • REP. TABORSAK, 109th Dist.
  • REP. TONG, 147th Dist.
  • REP. BYE, 19th Dist.
  • REP. HURLBURT, 53rd Dist.
  • REP. HWANG, 134th Dist.
  • REP. DREW, 132nd Dist.

AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE.

Be it enacted by the Senate and House of Representatives in General Assembly convened:

That the general statutes be amended to provide that: (1) A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if a diagnosis and treatment plan has been documented in the physician's medical record for that patient; and (2) no physician may 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 diagnosis and treatment plan has been documented in the physician's medical record for that patient.

Statement of Purpose:

To allow physicians to prescribe, administer or dispense long-term antibiotics for therapeutic purposes to patients clinically diagnosed with Lyme disease.

[ 05-15-2009, 08:40 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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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Feel free to post this on other forums.

-------------------------------------------THIRD THREAD OF THREE---------------------------------------

Rhodes Island Lyme Disease Bill:

TITLE 5: Businesses and Professions -- CHAPTER 5-37.5

Lyme Disease Diagnosis and Treatment:
  • SECTION 5-37.5-1
5-37.5-1 Short title. - This chapter shall be known and may be cited as the "Lyme Disease Diagnosis and Treatment Act."

  • SECTION 5-37.5-2
5-37.5-2 Preamble. - WHEREAS, The Governor's Commission on Lyme Disease and Other Tick-Borne Diseases (the "Commission") was formed by executive order in 2002; and

WHEREAS, The General Assembly recognizes the negative impact of Lyme disease on Rhode Islanders; and

WHEREAS, Rhode Island has the second highest number of reported Lyme disease cases as a percentage of population in the United States; and

WHEREAS, The Commission and the General Assembly held hearings and reviewed the medical literature to gain an understanding of the concerns of citizens and the medical community about Lyme disease diagnosis, treatment and prevention; and

WHEREAS, Citizens of Rhode Island diagnosed with chronic lyme disease experience great difficulty in being diagnosed and treated thereby impairing their access to medical care; and

WHEREAS, The lack of insurance coverage for diagnosis and long-term antibiotic therapies is a major barrier to access to medical care for persons with symptoms compatible with chronic Lyme disease; and

WHEREAS, Physicians whose practices are devoted to treating chronic Lyme disease patients, and who continue to provide treatment if they feel such treatment is medically necessary, have noted significant improvement in the condition of their patients; and

WHEREAS, There is substantial evidence that considerable scientific controversy surrounds the diagnosis and treatment of Lyme disease and other tick-borne illnesses; and

WHEREAS, Laboratory tests for Lyme disease are not definitive and consensus guidelines for diagnosis and treatment of chronic Lyme disease have not been developed; and

WHEREAS, Some physicians feel threatened by insurers and licensing boards for their choices among possible therapies for their patients; and

WHEREAS, The Commission and this General Assembly recommend that legislation be adopted that promotes access to medical care for persons with chronic Lyme disease in Rhode Island; and

Now, therefore, it is enacted by the General Assembly as follows:
  • SECTION 5-37.5-3
5-37.5-3 Definitions. - For purposes of the chapter:

(1) "Board" means the Rhode Island board of medical licensure and discipline;

(2) "Long term antibiotic therapy" means administration of oral, intramuscular or intravenous antibiotics, singly or in combination, for periods of greater than four (4) weeks;

(3) "Lyme disease" means the clinical diagnosis by a physician of the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi, or with late stage or chronic infection with Borrelia burgdorferi, or with complications related to such an infection. "Lyme disease" includes infection which meets the surveillance criteria set forth by the US Centers for Disease Control and Prevention (CDC), but also includes other acute and chronic manifestations of such an infection as determined by the physician;

(4) "Physician" means persons licensed pursuant to chapter 37 of this title by the board;

(5) "Therapeutic purpose" means the use of antibiotics to control a patient's symptoms determined by the physician as reasonably related to Lyme disease and its sequelae.
  • SECTION 5-37.5-4
5-37.5-4 Long-term antibiotic treatment. - (a) A physician may prescribe, administer, or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if this diagnosis and treatment plan has been documented in the physician's medical record for that patient. No physician is subject to disciplinary action by the board solely for prescribing, administering or dispensing long-term antibiotic therapy for a therapeutic purpose for a patient clinically diagnosed with Lyme disease, if this diagnosis and treatment plan has been documented in the physician's medical record for that patient.

(b) Nothing in this section shall deny the right of the board to deny, revoke, or suspend the license of any physician or discipline any physician who prescribes, administers, or dispenses long-term antibiotic therapy for a non-therapeutic purpose, or who fails to monitor the ongoing care of a patient receiving long-term antibiotic therapy, or who fails to keep complete and accurate ongoing records of the diagnosis and treatment of a patient receiving long-term antibiotic therapy.
  • SECTION 5-37.5-5
5-37.5-5 Mandatory coverage for certain Lyme disease treatments. - Every individual or group hospital or medical expense insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state on or after January 1, 2004, shall provide for Lyme disease treatment as provided in chapters 18, 19, 20, and 41 of title 27.

I received this report from an individual recently

"The Rhodes Island folks managed to pass these laws extremely effectively using long term political relationships. They moved quickly and quietly, before the legislature understood the controversy. They told the representative heading it up that if the insurance companies wanted to tweak the bill in any way, that they were to simply kill it."

Conclusion:

Let's Kick Some ***

[ 05-15-2009, 08:40 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.

E-mail: sbauzys@comcast.net

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swachsler
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Western Mass. Lymies:

There will be a showing this Tues, April 21, at Wendell Free Library, of Under Our Skin.

There will be a discussion after, led by a naturopathic doctor in our town.

The audience will mostly be town members. We are a very small town -- population 900, but we are a politically active town.

It would be a good opportunity to educate and give activist-oriented people info on how to help. It's best if a flock of Lyme advocates from elsewhere doesn't descend. But a couple informed people to answer questions, provide info, would be good.

I've ordered brochures from LDA. I'm bedbound and can't go, but I'm hoping my partner or one of my personal care assistants will go to hand out info and maybe tell my story. I know there are others in town who have Lyme/TBD.

If you can come and help out, please PM me. I'm very sick. Writing this tonight is a struggle. So please understand if I can't do much.

The nearest big towns Wendell is between are Amherst and Greenfield.

Thanks!

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METALLlC BLUE
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PROJECT TRISH

We now have a campaign in motion that everyone in Massachusetts is encouraged to begin. This is a national campaign as well, so those outside the state are also taking part in it. May is National Lyme Disease Month. So the timing is perfect.

Project Trish is the campaign name:

Step 1

As activists, your job is to alert family, friends, as well as other patients that you know offline and online that this campaign is going on. You may repost this message anywhere on the internet.

Step 2

Purchase a Sharpie Permanent Marker -- Black should be fine and also order spools Lime Green Ribbon from any store of your choice. We'd like the ribbon to be about 2-3 inches wide. You can possibly pick some up at Walmart or other local stores. Here are some options to buy online:


Step Two

These Lime Green ribbons or tape should be placed everywhere -- within reason -- around trees, signs, and telephone poles, etc. Write a small slogan on the end of each Ribbon. My phrase would be "Chronic Lyme Disease Lives Here." Some ideas are: Lyme Disease, Lyme Awareness, Lyme Destroys, Chronic Lyme Disease, Lyme & Associated Illnesses

Step Three:

Thank Trish, our incredible Political Team member from Massachusetts for this amazing idea and for her passion in following through in this campaign.

Our Intention

We're making a big statement. This is a national campaign, but is crucial for Massachusetts at this present time and will have a big impact. The goal is to gain local, state and national attention. It will not be long before media sources: News papers, and TV seek out. Currently a press release is being worked on by a number of people from "The team".

[ 04-15-2009, 07:08 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.

E-mail: sbauzys@comcast.net

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Tincup
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I've liked this idea since day one.

BUT...

Is this for May Lyme Disease Awareness Month?

Or.. what?

My opinion, and I KNOW you were going to ask... hehehe

It would be better to have a kick-off for it in the beginning of May .. and do note some BIG Lyme stuff will be going on this May... which for you would be some free national attention and more who would know what you are doing... and...

Leaving the ribbons hanging "around" year round will possibly look a bit "old" after a while.. and not have the impact you want.

I am going to put on the lime green for May... so I'm with you!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Pinelady
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Geez, you would think someone who is made from SUNY

would know all about lyme,

as one committee member is.

It sounds like they are just trying to throw their weight around.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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pmerv
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We are having this conversation in 2 places, here and on MassachusettsLyme, which is a bit confusing.

Not knowing the history of the Mass. resolution, this is what I think, after cursory reading:

I am concerned that the legislators don't appear to be aware of the depth
and seriousness of the divide between the camps.

The resolution doesn't
provide the security or balance I'd like to see although it does have patient
reps and an ILADS dr. However the 2 other drs could be IDSA and easily
outweigh one ILADS dr and a lowly patient, especially with those state
officials who are probably IDSA-friendly.

You have to consider how this could turn out if power were in the wrong hands. I'll play devil's advocate.

1) establishing a Massachusetts center for Lyme disease; - imagine, "controlled by IDSA." Must insist on BALANCE, represent the broad spectrum of
scientific/medical opinion (like the federal bill does) Otherwise IDSA will get
it and ILADS (minority) won't.

2) conducting a Lyme disease public health clinical screening study in
high risk regions; Using CDC criteria? Using ELISAs that miss half the cases?
Remember when Fallon had trouble finding enough patients to meet the strict
entry criteria for his study, they started to say maybe there weren't as
many Lyme patients as everyone thought.

(3) developing education materials and training resources for clinical
providers and school health personnel for detecting signs and symptom of
tick-borne illnesses in school-aged populations; Would these be based on
IDSA/CDC criteria? "Most people who think they have it don't really." "Lyme,
easy
to diagnose, easy to treat," "People with nonspecific symptoms don't have
Lyme." In the wrong hands this would be worse than useless.

4) statewide surveillance and testing for tick-borne diseases in ticks.
This might actually be quite interesting. I wonder how they would choose the
areas to test. In Missouri, the CDC didn't test ticks where patients
reported they had been infected. They tested ticks in other areas. Then didn't
find much. Same in California. They didn't know where to look for nymphs,
didn't find many and reported that. Of course that means no Lyme, right?

I'd like to see this bill get some serious lobbying from our legislative
expert, Pat Smith, to make sure we can get the most benefit from it. Every
word counts because you know the enemy will be looking for every loophole to
promote their own agenda. That is why the federal bill is so specific with
every detail spelled out carefully. You can't be too careful.

I will add that I have been posting quite a bit of material on the CALDA website about legislation, including a very good article (in 3 parts) written by Pat Smith and Lorraine Johnson. Anyone thinking they want to get involved with legislation should read it. http://www.lymedisease.org/news/lyme_action_alerts/index.1.html
down toward the bottom of the page

There is more on legislation passed in CA under the California button, click on Legislation. The composition of committees is VERY important. We are lucky with our current advisory committee but hating to rely on luck, we made several unsuccessful attempts to change the membership criteria.

There is more about legislation under the Activism button at http://www.lymedisease.org/activism/legislation/legislation_home.html

--------------------
Phyllis Mervine
LymeDisease.org

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swachsler
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Have just posted info about new support group -- for Franklin County -- meets in Sunderland. Post is in General Support.

Also, there's a great article in today's Worcester Telegram and Gazette:
http://www.telegram.com/article/20090429/NEWS/904290387/1101/NEWSREWIND

-s

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swachsler
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NEW Western Mass support group:
Hampshire County Lyme Support and Advocacy group
Ben Ross
benross2000@yahoo.com
(201)572-9465

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METALLlC BLUE
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IMPORTANT UPDATE: IT'S TIME TO STRIKE THE ENEMY!

Things we are doing and things we've done

Massachusetts. Since this original posting back in April, we've accomplished an enormous array of projects. We've had multiple showings of Under Our Skin, 3 new Support Groups appear. We've made new contacts politically and we've begun the process of creating a new Bill nearly identical to the Connecticut Lyme Disease Bill which you see listed above. We've seen at least 3-4 newspaper articles produced as well, including a very strong one from Trish. We also saw the immense outpouring of Project Trish, Ribbons Across America, which has gone forward with thousands of Green Ribbons showing up left and right.

We're Still Angry

There are many other projects that are still done or being done that I don't even know about! I took a rest this last week since I had a very bad flu, but I can promise you, that our determination has not waned. As long as children are dying and suffering, we will fight. As long as moms and dads struggle to pay mounting medical bills, we will fight. As long as we continue to be told "It's in your head." -- we'll fight. As long as "you" hurt, I will help, I will fight.

This Is War

We will continue this campaign until we find a permanent solution. Our strength is in our numbers. Like Sun Tzu, the art of war applies. Unlike our enemy we are placed in a position of fighting or death. We can't run away. There is no where to run? Where can you run to escape from yourself -- as long as you're infected and as long as your physicians are eroding under the political pressure of state medical boards, and as long as fear, and inadequate scientific understanding of how to truly crush this infection fester among the average inexperienced physician. We can fix all of this, but only in numbers. We have out maneuvered, we have out witted, and we have deceived our enemy -- and now they have grown weak as we surround them from all sides. Our compassion, humility, loyalty, and love for each other can not be worn, jaded or faded no matter the immense torture and burden we've faced. We can finish this.

I need you to muster every ounce of energy you can, and to follow these instructions below. I know you're tired, weary and feel like giving up sometimes, but unleash your rage into a single focus now. Make these calls.

Federal Legislation Needs Attention Right This Minute

The bold titles are written by me. The rest is written by Phyllis Mervine, President Of The California Lyme Disease Association

We are trying to pass important federal legislation. It's vital for everyone to play a part. We need to make the most of this historic moment, with a new president looking seriously at health care reform, the IDSA under siege for its flawed guidelines, and the Lyme films. The time is right. We may not get this opportunity again. Every single person needs to take responsibility for passing this bill.

Website Tracking Calls Made By Patients And Others To Politicians

Luke Miller of PennsylvaniaLyme took up the challenge to give you feedback on who is calling which legislator in which state, so you can track what is really happening.

Visit his website
  • http://www.letcongressknowaboutlyme.com/Home_Page.html
Massachusetts, Rise And Shine. You're Being Beaten

I just checked the website, and it looks like Massachusetts is tied with New York. But don't stop yet! You have generated a total of 14 calls, letters and emails to senators and congresspeople. 14 is still a very small number that doesn't reflect the amount of damage Lyme does in your state. It's time for all Massachusetts patients to step up to the plate.

Washington is doing an awesome job! They lead the pack by a long stretch.

They do have 78 people on their online group, but that is not the biggest group.

GA, NC, anad VA are close in size to WA,

CA has 800,

NY & MA have close to 200, and AZ, CT, PA, NJ have 100 or more.

Most groups should be able to do much better.

Just imagine you are a congressman with many pressing issues to deal with. You get one letter about Lyme disease. Big deal, right? Two letters, still no big deal. But we should be trying to get dozens of letters to EACH congressperson.

Go ahead and send copies to congresspeople not in your district, if their websites permit it.

Editors Note: Come on Massachusetts, let's beat Washington and New York!

Sit On Your *** And Do Nothing?

Believe me, if people don't want more money for research, better surveillance, better testing, and a cure, the federal government is happy to oblige! It's up to us to put Lyme into their minds and move them to support our bill.

Here Is How To Contact Your Legislators

Use LDA's great website to help you contact legislators. You'll also find out exactly what the federal bill is. It's critical we get it passed, seriously.

  • http://www.cwork.com

Editor Note: This web page above: cwork.com, contains all the information you'll need, including basic talking points, stats, facts, and sample letters. It'll explain the bill as well.

Website Tracking: Make Sure You Contact Luke

When you call or write your legislator, let Luke know at pittpan2005@yahoo.com

He will update his website to include your info and then we'll know how we are doing.

Do your bit, then email Luke with details. Tell us here, too, how easy it was, and encourage others. It will only take a few minutes. If you need help, ask for help. No excuses! Get your family and friends to do it, too. Do it now! Let's get this ball rolling! - Phyllis Mervine. CALDA

Website References:

California Lyme Disease Association. - www.lymedisease.org

Lyme Disease Association - http://www.cwork.com/

Let Congress Know About Lyme - http://www.letcongressknowaboutlyme.com/Home_Page.html

[ 05-04-2009, 05:04 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.

E-mail: sbauzys@comcast.net

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CathyMary
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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?

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bettyg
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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 !!
**********************************

bettyg
Honored Contributor (10K+ posts)
Member # 6147
posted 21-04-2009 12:27 PM


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


Frank Pallone, Jr., New Jersey, Chairman

D.C. office: Phone: (202) 225-4671
Fax: (202) 225-9665

NJ office: Phone: (732) 571-1140
Fax: (732) 870-3890


John D. Dingell, MI

D.C. office: Phone: (202) 225-4071
Fax: (202) 226-0371

MI office: Phone: (313) 278-2936
Fax: (313) 278-3914


Nathan Deal, Ranking Member, GA

D.C. office: Phone: (202) 225-5211
Fax: (202) 225-8272

GA office: Phone: (770) 535-2592
Fax: (770) 535-2765


Bart Gordon, TN

D.C. office: Phone: (202) 225-4231
Fax: (202) 225-6887

TN office: Phone: (615) 896-1986
Fax: (615) 896-8218


Ralph M. Hall, TX

D.C. office: Phone: (202) 225-6673
Fax: (202) 225-3332

TX office: Phone: (972) 771-9118
Fax: (972) 722-0907


Anna G. Eshoo, CA

D.C. office: Phone: (202) 225-8104
Fax: (202) 225-8890

CA office: Phone: (650) 323-2984
Fax: (650) 323-3498


Ed Whitfield, KY

D.C. office: Phone: (202) 225-3115
Fax: (202) 225-3547

KY office: Phone: (270) 885-8079
Fax: (270) 885-8598


Eliot L. Engel, NY

D.C. office: Phone: (202) 225-2464
Fax: (202) 225-5513

NY office: Phone: (718) 796-9700
Fax: (718) 796-5134


John Shimkus, IL

D.C. office: Phone: (202) 225-5271
Fax: (202) 225-5880

IL office: Phone: (217) 492-5090
Fax: (217) 492-5096


Gene Green, TX

D.C. office: Phone: (202) 225-1688
Fax: (202) 225-9903

TX office: Phone: (281) 999-5879
Fax: (281) 999-5716


John B. Shadegg, AZ

D.C. office: Phone: (202) 225-3361
Fax: (202) 225-3462

AZ office: Phone: (602) 263-5300
Fax: (602) 248-7733


Diana DeGette, CO

D.C. office: Phone: (202) 225-4431
Fax: (202) 225-5657

CO office: Phone: (303) 844-4988
Fax: (303) 844-4996


Roy Blunt, MO

D.C. office: Phone: (202) 225-6536
Fax: (202) 225-5604

MO office: Phone: (417) 889-1800
Fax: (417) 889-4915


Lois Capps, CA, Vice Chair

D.C. office: Phone: (202) 225-3601
Fax: (202) 225-5632

CA office: Phone: (805) 730-1710
Fax: (805) 730-9153


Steve Buyer, IN

D.C. office: Phone: (202) 225-5037
Fax: (202) 225-2267

IN office: Phone: (574) 583-9819
Fax: (574) 583-9867


Jan Schakowsky, IL

D.C. office: Phone: (202) 225-2111
Fax: (202) 226-6890

IL office: Phone: (773) 506-7100
Fax: (773) 506-9202


Joseph R. Pitts, PA

D.C. office: Phone: (202) 225-2411
Fax: (202) 225-2013

PA office: Phone: (717) 393-0667
Fax: (717) 393-0924

Lancaster Office:
150 North Queen Street, Suite 716
Lancaster, Pennsylvania 17603
Phone: (717) 393-0667
Fax: (717) 393-0924

Unionville Office:
PO Box 837
Unionville, Pennsylvania 19375
Phone: (610) 444-4581
Fax: (610) 444-5750


Tammy Baldwin, WI

D.C. office: Phone: (202) 225-2906
Fax: (202) 225-6942

WI office: Phone: (608) 258-9800
Fax: (608) 258-9808


Mike Rogers, MI

D.C. office: Phone: (202) 225-4872
Fax: (202) 225-5820

MI office: Phone: (517) 702-8000
Fax: (517) 702-8642


Mike Ross, AR

D.C. office: Phone: (202) 225-3772
Fax: (202) 225-1314

AR office: Phone: (870) 536-3376
Fax: (870) 536-4058


Sue Wilkins Myrick, NC

D.C. office: Phone: (202) 225-1976
Fax: (202) 225-3389

NC office: Phone: (704) 362-1060
Fax: (704) 367-0852


Anthony D. Weiner, NY

D.C. office: Phone: (202) 225-6616
Fax: (202) 226-7253

NY office: Phone: (718) 520-9001
Fax: (718) 520-9010


Tim Murphy, PA

D.C. office: Phone: (202) 225-2301
Fax: (202) 225-1844

PA office: Phone: (412) 344-5583
Fax: (412) 429-5092

Pittsburgh Office:
504 Washington Road
Pittsburgh, Pennsylvania 15228
Phone: (412) 344-5583
Fax: (412) 429-5092

Greensburg Office:
2040 Frederickson Place
Greensburg, Pennsylvania 15601
Phone: (724) 850-7312
Fax: (724) 850-7315


Jim Matheson, UT

D.C. office: Phone: (202) 225-3011
Fax: (202) 225-5638

UT office: Phone: (801) 486-1236
Fax: (801) 486-1417


Michael C. Burgess, TX

D.C. office: Phone: (202) 225-7772
Fax: (202) 225-2919

TX office: Phone: (972) 434-9700
Fax: (972) 434-9705


Jane Harman, CA

D.C. office: Phone: (202)

225.8220 CORRECTED!

Fax: (801) 486-1417

CA office: Phone: (310) 643-3636
Fax: (310) 643-6445


Marsha Blackburn, TN

D.C. office: Phone: (202) 225-2811
Fax: (202) 225-3004

TN office: Phone: (901) 382-5811
Fax: (901) 373-8215

Memphis Office:
7975 Stage Hill Boulevard, Suite 1
Memphis, Tennessee 38133
Phone: (901) 382-5811
Fax: (901) 373-8215

Clarksville Office:
1850 Memorial Drive
Clarksville, Tennessee 37043
Phone: (931) 503-0391
Fax: (931) 503-0393

Franklin Office:
109 3rd Avenue South, City Hall, Suite 117
Franklin, Tennessee 37064
Phone: (615) 591-5161
Fax: (615) 599-2916


Charles A. Gonzalez, TX

D.C. office: Phone: (202) 225-3236
Fax: (202) 225-1915

TX office: Phone: (210) 472-6195
Fax: (210) 472-4009


Phil Gingrey, GA

D.C. office: Phone: (202) 225-2931
Fax: (202) 225-2944

GA office: Phone: (770) 429-1776
Fax: (770) 795-9551

Marietta Office:
219 Roswell Street
Marietta, Georgia 30060
Phone: (770) 429-1776
Fax: (770) 795-9551

Rome Office:
600 East 1st Street, Suite 301
Rome, Georgia 30161
Phone: (706) 290-1776
Fax: (706) 232-7864

Cartersville Office:

Cartersville, Georgia
Phone: (678) 721-2509
Fax:


John Barrow, GA

D.C. office: Phone: (202) 225-2823
Fax: (202) 225-3377

GA office: Phone: (912) 354-7282
Fax: (912) 354-7782


Joe Barton, TX (ex officio)

D.C. office: Phone: (202) 225-2002
Fax: (202) 225-3052

TX office: Phone: (817) 543-1000
Fax: (817) 548-7029


Donna M. Christensen, VI

D.C. office: Phone: (202) 225-1790
Fax: (202) 225-5517

VI office: Phone: (340) 774-4408
Fax: (340) 774-8033


Kathy Castor, FL

D.C. office: Phone: (202) 225-3376
Fax: (202) 225-5652

FL office: Phone: (813) 871-2817
Fax: (813) 871-2864


John P. Sarbanes, MD

D.C. office: Phone: (202) 225-4016
Fax: (202) 225-9219

MD office: Phone: Phone: (410) 832-8890
Fax: (410) 832-8898


Christopher S. Murphy, CT

D.C. office: Phone: (202) 225-4476
Fax: (202) 225-5933

CT office: Phone: (860) 223-8412
Fax: (860) 827-9009


Zachary T. Space, OH

D.C. office: Phone: (202) 225-6265
Fax: (202) 225-3394

OH office: Phone: (330) 364-4300
Fax: (330) 364-4330

Dover Office:
137 East Iron Avenue
Dover, Ohio 44622
Phone: (330) 364-4300
Fax: (330) 364-4330

Zanesville Office:
17 North Fourth Street, Suite A
Zanesville, Ohio 43701
Phone: (740) 452-6338
Fax: (740) 452-6354

Chillicothe Office:
14 South Paint Street, Suite Six
Chillicothe, Ohio 45601
Phone: (740) 779-1636
Fax: (740) 779-2352


Betty Sutton, OH

D.C. office: Phone: (202) 225-3401
Fax: (202) 225-2266

OH office: Phone: (330) 865-8450
Fax: (330) 865-8470


Bruce L. Braley, IA

D.C. office: Phone: (202) 225-2911
Fax: (202) 225-6666

IA office: Phone: (319) 287-3233
Fax: (319) 287-5104


Henry A. Waxman, CA (ex officio)

D.C. office: Phone: (202) 225-3976
Fax: (202) 225-4099

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.

babesiosis, Rocky Mountain spotted fever, Southern Tick Associated Rash Illness (STARI), ehrlichiosis, anaplasmosis, Tularemia, and bartonellosis.


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.

babesiosis, Rocky Mountain spotted fever, Southern Tick Associated Rash Illness (STARI), ehrlichiosis, anaplasmosis, Tularemia, and bartonellosis.


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.

[ 04-27-2009, 01:00 AM: Message edited by: bettyg ]


lou
Frequent Contributor (1K+ posts)
Member # 81
posted 26-04-2009 06:01 PM

Good job. These are the people to go after on cosponsoring the lyme legislation.

They need to be educated. Visits by constituents when reps are home in district offices are GREAT.

Posts: 6381 | From Not available | Registered: Oct 2000 |


bettyg
Honored Contributor (10K+ posts)
Member # 6147
posted 27-04-2009 01:01 AM

lou, yes, i love your idea for those living in the states WHO HAVE FOLKS ON THIS COMMITTEE, visit their DISTRICT OFFICES!!

a face to go with their name and stories!! brilliant lou! [Smile]
--------------------

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swachsler
LymeNet Contributor
Member # 18155

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The calls work!

Thanks to cwork.com for making it so easy.

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

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bettyg
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sharon, what wonderful news you posted! way to go girl; now rest; bed time for me.
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trishee
LymeNet Contributor
Member # 9699

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Well done Sharon, you made it easy for all of us.
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

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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.

Contact us at S.L.A.M@msn.com"

CONCORD SUPPORT GROUP

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 roseruze@verizon.net

WESTERN MASSACHUSETTS SUPPORT GROUP

Hampshire County Lyme Support and Advocacy Group

  • Ben Ross benross2000@yahoo.com
  • Phone: (201)572-9465

Metrowest Lyme Support Group

Karen Schlosberg sent out this message:

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!

ks555@yahoo.com, 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 ks555@yahoo.com, 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.

E-mail: sbauzys@comcast.net

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bettyg
Unregistered


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hi mike, NO TIME is shown for this meeting.

GREAT WINDUP; got me all excited and i don't even live in mass [Smile] xox

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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

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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: KurtHayes@verizon.net,
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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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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.

Contact us: S.L.A.M@msn.com

--------------------
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.

E-mail: sbauzys@comcast.net

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bettyg
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quote:
Originally posted by METALLlC BLUE:

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.

Contact us: S.L.A.M@msn.com


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METALLlC BLUE
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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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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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

Dr. Gary Wormser
New York

Website: http://www.theday.com/re.aspx?re=4c021570-2c00-4d78-9be9-0c4c5c77a559

Title Of Editorial: A Cure That Dose Harm".

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.

E-mail: sbauzys@comcast.net

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ticked-offinNc
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Nice Job in your response. Very articulate.Thanks
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bettyg
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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!
******************************************************

please JUDGE his, no. 62! disagree, mean, clueless

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.

E-mail: sbauzys@comcast.net

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bettyg
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yes, our board is heavily monitored!!

[ 06-21-2009, 01:14 AM: Message edited by: bettyg ]

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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 !! [Smile] [group hug] [kiss]

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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.

E-mail: sbauzys@comcast.net

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seekhelp
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Does this mean Tracy9's superstar LLMD is back in business?
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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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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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.
[Smile]

--------------------
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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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She said she had no interest in crossing state lines to treat Lyme disease (Last I heard). She had recently moved to MA with her family.

--------------------
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.

E-mail: sbauzys@comcast.net

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METALLlC BLUE
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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.

E-mail: sbauzys@comcast.net

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Lymeblue
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http://www.wickedlocal.com/belmont/news/x593048090/Lawmakers-urged-to-intervene-protect-doctors-treating-Lyme-patients

http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20090923/NEWS/909230312/-1/NEWSMAP

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22dreams
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http://www.lowellsun.com/ci_13400869?IADID=Search-www.lowellsun.com-www.lowellsun.com

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.

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