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» LymeNet Flash » Questions and Discussion » Medical Questions » The Broken Record- IDSA says no chronic Lyme AGAIN & again

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Author Topic: The Broken Record- IDSA says no chronic Lyme AGAIN & again
Tincup
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I think you all are starting to get on their nerves.

[lol]

This was on a website. It seems the Hot Momma (president) of the IDSA was encouraging doctors to sign on to the letter below in an effort to kill our bill ... and it was sent to Congress.

From the looks of this letter... it appears those of you with chronic Lyme, you know, those of you who feel you deserve treatment... have annoyed both the IDSA and the ALDF with your whining to officials about it.

Good job!!!

[Big Grin]

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


The IDSA ducks Letter to Congress. It was first circulated all over the place.... They said.... "Please review the following letter to determine if you want to sign it along with other New York IDSA members."


Dear Senators Schumer and Gillibrand and Representatives Bishop, Israel, King, McCarthy, Ackerman, Meeks, Crowley, Nadler, Weiner, Towns, Clarke, Velazquez, McMahon, Maloney, Rangel, Serrano, Engel, Lowey, Hall, Tonko, Hinchey, McHugh, Arcuri, Maffei, Lee, Higgins, Slaughter and Massa:

We are writing to you as New York infectious diseases clinicians and scientists, as well as your constituents, to express our concerns regarding Lyme disease legislation that was introduced in the last session of Congress, S. 1708/H.R. 741, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act.

We understand this bill has been re-introduced in the 111th Congress in the House (H.R. 1179), but not the Senate. We urge you to oppose it and to not cosponsor the bill.

While we support the bill's goal of improving the federal government's response to the growing threat of tick-borne diseases, we are alarmed at the references to ``chronic'' Lyme disease.

The concept of Lyme disease as a chronic condition requiring long-term antibiotic therapy is not shared by the vast majority of the medical community and relies on questionable scientific evidence.

Furthermore, long-term antibiotic therapy poses substantial risks to the community and the patient and can even be fatal.

Lyme disease is a real public health threat and the most common vector-borne disease in the United States.

Patients with Lyme disease are frequently misdiagnosed. However, our concern is with the concept of chronic Lyme disease.

Self-described ``Lyme-literate'' clinicians believe that the Lyme disease bacteria, Borrelia burgdorferi, can survive conventional antibiotic therapy (usually 10 to 28 days of oral antibiotics) and become a chronic infection.

Therefore, they claim, patients must take antibiotics for months or even years in order to fully eradicate the infection.

The vast majority of scientific evidence does not support this view.

Not a single well designed, reproducible study to date has found B. burgdorferi in human patients following conventional antibiotic therapy, and there is no evidence to indicate extended antibiotic therapy is beneficial.

This casts doubt on the basic premise of long-term antibiotic therapy.

Some patients do improve while taking long-term antibiotics. But in studies sponsored by the National Institutes of Health, patients receiving placebo improved to about the same extent as those receiving antibiotics.

Also, some antibiotics have anti-inflammatory or neuroprotective ``feel-good'' side effects.

These properties most likely are responsible for the improvements some patients experienced in some studies.

In addition to providing no proven benefit, the risks of exposing patients to long courses of antibiotics are substantial. Patients often experience adverse reactions to the drugs.

In fact, some of the symptoms that the ``Lyme-literate'' community attributes to chronic Lyme disease, such as fatigue and mood swings, may be adverse reactions to the antibiotics.

In addition, infections in the catheter used to deliver intravenous antibiotics are common and have led to life-threatening bloodstream infections.

There are many anecdotal accounts of serious adverse reactions.

According to one report published in the peer-reviewed literature, a 30-year-old woman died from an infected catheter after undergoing inappropriate intravenous antibiotic therapy for more than two years.

The risks of inappropriate antibiotic therapy go beyond the individual patient.

Antibiotic-resistant ``superbugs'' such as methicillin-resistant Staphylococcus aureus (MRSA) are on the rise in part because of the inappropriate use of antibiotics.

Long-term antibiotic therapy for Lyme disease only makes the problem worse, without any evidence of benefit.

Many patients credit long-term antibiotic therapy for their miraculous recoveries from debilitating fatigue, pain, headaches, concentration problems, and other symptoms.

There is no doubt these patients experience great pain.

But the question is whether Lyme disease is responsible for their suffering.

Several studies from Lyme disease clinics at major universities have found that most patients who came to these clinics with a previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression--conditions that need treatment with something other than antibiotics.

Diagnosing patients with subjective, nonspecific symptoms such as fatigue, pain, and difficulty concentrating can be a difficult and frustrating experience for both the patient and the clinician.

Most frustrating are the cases that do not have a clear cause after a thorough examination and an exhaustive battery of tests.

We do not have all the answers for why some patients are suffering.

Even in the 21st century, medicine is sometimes an inexact and imperfect science.

When patients are left seeking answers, a window of opportunity opens for clinicians who choose to administer treatments with unproven benefits.

Many ``Lyme-literate'' clinicians back up their diagnosis with tests that are unproven or have not been approved by the Food and Drug Administration for that purpose--a practice that has drawn a warning from the Centers for Disease Control and Prevention.

For vulnerable patients, the diagnosis feels like deliverance from their suffering.

For far too many patients, the diagnosis is false.

We urge you to consider these factors when you make policy decisions regarding Lyme disease.

If sound evidence emerges that Lyme disease is a chronic condition that can be successfully treated with long-term antibiotics, we would gladly accept it, if it would help us treat our patients in New York.

However, the burden of proof rests with those who make this claim.

Until more reliable evidence emerges, we regard the theory of chronic Lyme disease infection to be speculative at best, and we consider long-term antibiotic therapy to be more harmful than beneficial.

Lyme and other tick-borne diseases are a serious and growing public health threat, and we support efforts to improve prevention and education and foster appropriate research.

However, legislation that supports the theory of chronic Lyme disease and long-term antibiotic therapy is not in the best interest of patients or public health.

Thank you in advance for carefully considering our position.

Should you have additional questions, please contact Phillip J. Baker, Ph.D., Executive Director, American Lyme Disease Foundation at [email protected]

or Michael Ochs, Government Relations Associate, Infectious Diseases Society of America at [email protected]

Sincerely,

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

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Leelee
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quote:


Also, some antibiotics have anti-inflammatory or neuroprotective ``feel-good'' side effects.


Seriously??? Really??? I have never heard of that before and I can't imagine anyone with Lyme is thrilled to be taking antibiotics. Especially for the "feel-good" effect, if there is such a thing.

I do think one day the tide will turn and the IDSA will lose its clout so to speak. But I wish that day had already come and gone.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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Tincup
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Hey Leelee..

That was MY favorite quote too!

If I want some "feel good" side effects from drugs...

I sure wouldn't use....

ANTIBIOTICS!!!

[lol]

I may NOW have a bad hip...

But I once WAS "hip".

[Big Grin]

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

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lymielauren28
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I absolutely HATE them!! So childishly spoken, but that's the best my poor brain can come up with today.

There "efforts" are so distorted and transparent, and it's the same old song and dance.

I've been thinking a lot lately about what can be done on our part as a means of making a stand and public education, and a friend Trish over at Lymefriends came up with a most fantastic idea.

If every single person in the U.S. that has Lyme, had Lyme or has a family member or friend with Lyme tied a green ribbon on there mailbox and put up one sign (they're working on one universal sign) it would get the attention of others. People would naturally be curious as to the meaning, and it's a perfect opportunity to have our voice heard.

We take down the ribbon when a cure for Lyme is found. As the epidemic grows and NOTHING is done about it, so does the green ribbon.

Anyways, none of this was my idea, and I certainly don't want to steal Trishes thunder, but I wanted to share it with others.

I'll see if I can get her to run over here and post about it in a post all it's own to get attention.

Lauren

--------------------
"The only way out is through"

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Tincup
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I like your idea.

And here is another... and it only takes 3 minutes.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/1580

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

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seekhelp
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It's so hard to beat the IDSA. They make LLMDs out to sound like such swindlers. I wonder if we'll ever get anywhere. They sound so convincing.
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Tincup
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Hey seek... truth is..

They compromise less than 2% of the just the "front line" doctors in the USA today.

They just run around trying to MAKE themselves SOUND big...

Which usually works because of all that hot air.

[lol]

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

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Abxnomore
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Sickening to read. I've contacted my senators and representatives. I hope the ILADS comes out with

the right side of the story and sends a similar letter rebutting the IDSA positions.

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Tincup
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Without us doing the rebutting...

We have no chance.

Thanks for contacting them. If you want to call again, please do.

Might want to put their numbers on your speed dial.

[Big Grin]

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

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'Kete-tracker
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seek, [shake] I have to say, this 'Letter to Congress' is Anything but "convincing".
To independant minds (& we can only hope many such exist in Congress [bow] ), this little regurgitation of outdated, very poorly thought-out, highly misleading garbage will be seen for what it is... a con job. [Wink] And a weak 1 at that.

There are just SO many excerpts I could easily refute. (I intend to, in a post tomorrow.)
A good example is the crap about how I coulda done just as Well on placebos (sugar pills). [loco]
I mean, GOSH, think of the $$ I coulda saved! [bonk]
I'm actually Surprised they didn't do a better job. That bit about "if it would help us treat our patients in NY" I mean, whaaaa? [Eek!]

I'm no Lyme specialist, just an independant researcher, & (nearly) recovered late-Lyme victim.
This diatribe belongs in the [toilet]

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bettyg
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HOG WASH AT ITS BEST; PURE "PU"! [toilet] [tsk] [puke] [cussing]


TINCUP, in the last day or 2 i sent those on my lyme list group about PJ LANGHOFF'S, THE BAKER'S DOZEN/IDSA book ... the lunatic fringe...available at amazon.com, etc.

i posted about it here too...


i hope you forwarded that on to "your" top folks you work with including burrascano, etc.


pj has wonderful links there showing where they stated this/that and many of idsa have used "chronic lyme" in last 10-20 YEARS!!
**********************************

why not use her work and pam's to attack them back. i'm NOT read pam's book yet but from what i hear ... both appear to be the same type of thorough investigative work!


i was just reading this afternoon in our warm 70 degree weather about OSP A, B, AND C;

a/b are owned by ?? columbia univ. and c is owned by yale; both have patents on them and yet NOT ONE THING HAS BEEN DONE ON THESE. i'd have to go get the book to get the exact quote but they've had them for years and NO PROGRESS TO HELP US!!

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METALLlC BLUE
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I'm going to make a sign for my front Yard that's big enough to be seen on the street. I live on a quadruple lane street which sees probably about 10,000 cars per day.

I also think it's time for groups to seriously start making witty informative bumper stickers or bigger messages on the back driver side windows of cars, especially for us and our families. They should be well thought out, and universally distributed to patients and families at group meetings, lectures, even by mail. The idea is drawing together the front line with the same unified message.

CHRONIC LYME DISEASE LIVES HERE.

--------------------
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: [email protected]

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sutherngrl
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I think the letter just makes them look stupid. They can't think of anything new to say and just keep repeating the same crap over and over.

They should be trying to help us, but instead they put us down. That doesn't make them look good to me. They always turn it around to being all in our heads; and the part about us seeking out antibiotics, well that is just way too ridiculous for anyone to believe. Who seeks out antibioitics?

And why do they freak out so much about over using antibiotics, when antidepressants are handed out like candy in every doctor's office in this country. What blood test is being done that confirms that all those people are truly depressed?

I thought they had a new board; but this letter portrays the exact same ideas of the board before them. So basically they have no new ideas and are just passing the same ones down from the previous board from years gone by.

These people are not interested in finding out the truth.

I D S A......stands for....I Don't Seek Answers

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jtavares76
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Sutherngrl...I couldn't agree more.


Doctors hand out Prozac to anyone without the blink of eye. You're fatigued - take an antidepressant. You have body aches - take an antidepressant. Can't sleep - take an antidepressant.


Where are the confirmatory tests for handing out these meds? Oh that's right, it's based on clinical diagnosis and symptoms.


Doctors will give my nephew tetracycline for months without batting an eyelash to clear up his acne but I can't even get meds to treat my lyme b/c of fear of antibiotic resistance. What a crock!


I am only at the start of my lyme journey but I learn a bit more everyday. The sad part is majority of the people who don't know about lyme believe what the IDSA says.


I'm with Metallic Blue...let's post sign in our yards and attract some attention.


JT

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tcw
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Classic misdirection - HR 1179 makes no mention of the specific cause of the symptoms of Lyme and does not support any specific treatment, certainly not long term antibiotics.
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TerryK
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I wrote to my representative.

Most of the letter looks like it was cut and pasted from past letters. This seems new:

"There are many anecdotal accounts of serious adverse reactions."

They are adamantly opposed to anectodotal accounts of improvement but use this to support their arguments?

Not only hypocritical but vague.

Terry

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TerryK
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I'm sure they are more than just a little alarmed at the idea of a physician who treats chronic lyme disease being included as a voting member of the committee.

http://www.lymediseaseassociation.org/HR1179Text.pdf

We need this!!! WRITE TO YOUR REPRESENTATIVES!!!

Terry

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sutherngrl
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I am all for the signs in the yard. I bet if I put one in my yard here in Mississippi, that pretty soon the health department would be at my door. Because we all know that "we don't have Lyme Disease in MS".

Too bad I don't live on a busy street!

As far as the IDSA, way too many contradictions in what they say.

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Tincup
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"The concept of Lyme disease as a chronic condition requiring long-term antibiotic therapy is not shared by the VAST MAJORITY of the medical community..."

Actually, aren't WE the VAST majority? I mean cases of Lyme- reported with the CDC 10 fold factor.. indicates we are..

3 1/2 MILLION strong!

And..

To note-

The IDSA boasts to have 8,000 members.

Whoopie.

In CT alone for example.... an itty bitty state... there are over 7,000 OTHER doctors that aren't sucked in by the IDSA propaganda.

Nationwide... there are 12,800 REGULAR doctors on the front lines per state (average)...

Compared to 1.25 IDSA ducks per state (average).

So what I see is a lot of feather pumping on their part..

And if I may add... a LOT of duck poop.

[Big Grin]

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

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Zebco 33
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Sutherngrl~ The IDSA said "There is no lyme disease in Tennessee" also.

Hmmmmm. The Governor of Tennsessee contacted Lyme disease two years ago.

What do they do with that kind of info?

I think we know the "weapons of mass destruction~

T.I.C.K.S.

[shake]

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'Kete-tracker
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Just commentary on 1 excerpt form the IDSA 'letter' tonight:
"If sound evidence emerges that Lyme disease is a chronic condition that can be successfully treated with long-term antibiotics, we would gladly accept it, if it would help us treat our patients in New York."

*eek* (I can hear a rumble of chins hitting the floor)

WELL...
1) How do you define "successful treatment" if it's a chronic condition you're treating? [lol]

2) What kind of evidence would they consider "sound"? [Roll Eyes] They IGNORE over 1/2 the controlled studies & literature published within the Lyme community! (I wonder if they'd truely be "happy" with ANY evidence refuting their claims. [Big Grin] )

3) Are we supposed to feel empathetic that they are interested in a breakthru so they can 'finally' treat their "patients in NY"? [confused]

How about the patients suffering in Connecticutt?
Rhode Island Maryland? Mass? New Jersey? [Mad]
How about Wisconson? California? Virginia? NH? ME? And don't forget real sufferers in: PA, DE, NC, SC, WV, KY, GA, AL, MS, OH, IN, TN, IL, MI, MN, NE, KS, MO, AR, TX, CO, WY, OR, WA? [rant]

I'm sure I left a few out, but the point is, why the concern about those still suffering from, as the IDSA puts it, "post-Lyme syndrome" who reside specifically in the Empire state? [loco]

This reads like a 1st draft from 1 of the 'lead ducks'...& I bet I know which one. [Wink]

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Robin123
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The IDSA suffers from Chronic Denial.
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bettyg
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tracker,

sorry, but have to throw this in....just kidding!


you forgot vocal betty in iowa and all the california calda members PLUS the rest of the states!

southerngirl, i loved your interpretation...HOW TRUE!!

These people are not interested in finding out the truth.

I D S A......stands for....I Don't Seek Answers
***********************************************

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Tincup
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CALL TO ACTION 2009 #2 (March 18)

from Pat Smith, President,
Lyme Disease Association, Inc. (LDA)
www.LymeDiseaseAssociation.org

IDSA Stealth Campaign to Kill the Lyme Bill

IDSA is afraid of your voice. Use it today to defeat them and your disease!

Do you know!

While you are struggling to get diagnosed, treated, reimbursed for your medications and trying to protect your doctors right to clinically diagnose and treat, a medical specialty society is quietly working behind the scenes to eliminate the opportunity for research into your disease--research which could hold the key to your health.

Last week LDA uncovered a behind the scenes maneuver initiated by the Infectious Diseases Society of America, IDSA− a letter, sent to doctors in specific states, asking them to oppose the Lyme bill, which they describe as one ``that would establish a federal advisory panel on Lyme and other tick-borne diseases heavily weighted with patient advocate group representation and with a special seat reserved for a chronic Lyme disease physician.''

In the letter to doctors, the IDSA president said, ``the bill's overt support for chronic Lyme disease and other views promoted by Lyme disease activists is troubling.

We are concerned about the federal government backing `chronic' Lyme disease when Lyme disease has never been shown to be a chronic infection, and when those patients diagnosed with this dubious condition are frequently treated with long-term antibiotic therapy, exposing them to significant risks for questionable benefits.

Our mission is to promote public health and good patient care, and we are concerned that this bill would do neither.''

To defeat the bill and the research monies, IDSA asked doctors to sign onto a letter to Congress that states, in part, ``we are alarmed at the references to `chronic' Lyme disease.''

It stated some study patients with a ``previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression--conditions that need treatment with something other than antibiotics.''

IDSA ``urge[s]'' our Congressman to, ``oppose it and to not cosponsor the bill.''

IDSA is trying to silence treating physician and patient voices in DC. It does not want research which can help you be accurately diagnosed and treated, but continues to promote the ``not Lyme'' diagnosis, which means no antibiotic treatment for you and your families.

We NEED you to CALL your federal representatives this week to combat this assault.

We MUST ensure our representatives are not swayed by the IDSA's propaganda!


TAKE ACTION NOW!

* Click here to determine who your own US House Member is and who both your Senators are.

http://www.visi.com/juan/congress/

* Please call all three of your representatives today!

Sample phone blurb 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 disease has become an epidemic spreading across the county, 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 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 disease has become an epidemic spreading across the county, 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)
`````````````````````````````````````

For more information, go to

www.LymeDiseaseAssociation.org

Click Legislation on top menu.

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

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Tincup
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It takes less than 5 minutes and we need your support to get the bill moving.

[Big Grin]

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

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Geneal
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Inperfect medicine in an inperfect world.

So.....what does the IDSA think we all have

28 days post antibiotic therapy.

Darn, but I wish I had some of those "feel good" meds.

These idiots continue to disgust me over and over again.

What a waste of tax payer's monies at the cost of our lives and health.

If Lyme was so simple and easy,

Why would NIH still be researching this "bio-weapon"?

Sigh. Off to contact legislatures....again.

Hugs,

Geneal

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nellypointis
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quote:
Originally posted by Geneal:
So.....what does the IDSA think we all have
28 days post antibiotic therapy.

YES!

I think we should officially request that the IDSA give a scientifical supported answer to the question:

"What are we suffering from?"

instead of their broken record answer that "they DON'T have Lyme."

NOT having Lyme is NOT a diagnosis!!

Can they prove we are all raving neurotics and imagining the awful symptoms that are stopping us from having a life?

I know many people (including myself) who actually went to a psychiatrist (several in fact) only to be sent on my way (back to a physician) because he felt I had no psych pathology that could explain my VERY OBJECTIVABLE symptoms, and certainly nothing that could be treated by a psychiatrist.

I had many tick-bites and the typical EM rash, yet I am not saying it is the Bb that is still making me as ill as I am, but abx and anti-protozoals are the only things that help contain my illness. NOTHING ELSE even touches it. Anti-inflammatories don't help, anti-arrhythmic drugs nearly killed me, anti-depressants made me feel so much worse, benzos help me sleep but do nothing other than that etc. The only progress I made was by anti-INFECTIVE drugs.

I wish ILADS would ask a formal question to that effect.

Nelly (Paris-France)

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nellypointis
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quote:
Originally posted by Geneal:
So.....what does the IDSA think we all have
28 days post antibiotic therapy.

YES!

I think we should officially request that the IDSA give a scientifically supported answer to the question:

"What are we suffering from?"

instead of their broken record answer that "they DON'T have Lyme."

NOT having Lyme is NOT a diagnosis!!

Can they prove we are all raving neurotics and imagining the awful symptoms that are stopping us from having a life?

I know many people (including myself) who actually went to a psychiatrist (several in fact) only to be sent on my way (back to a physician) because he felt I had no psych pathology that could explain my VERY OBJECTIVABLE symptoms, and certainly nothing that could be treated by a psychiatrist.

I had many tick-bites and the typical EM rash, yet I am not saying it is the Bb that is still making me as ill as I am, but abx and anti-protozoals are the only things that help contain my illness. NOTHING ELSE even touches it. Anti-inflammatories don't help, anti-arrhythmic drugs nearly killed me, anti-depressants made me feel so much worse, benzos help me sleep but do nothing other than that etc. The only progress I made was by anti-INFECTIVE drugs.

I wish ILADS would ask a formal question to that effect.

Nelly (Paris-France)

[ 03-18-2009, 11:48 AM: Message edited by: nellypointis ]

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Tincup
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Hey Nelly! Nice to see you!

I laughed out loud at your comment...

"NOT having Lyme is NOT a diagnosis!!"

That is such a simple statement.... but so right!!!

You got it! I love it!

[lol]

To all.

Talk about a broken record... Listen to ME calling the kettle black.

The bill is the BEST hope we have in getting this situation straightened out.

NO other plans, actions, etc will do 1/100th as much as this advisory committee will- that is provided for in this bill.

I KNOW you get tired of hearing the line that you should write and call, over and over...

BUT..

If this bill doesn't get a hearing.. which has been worked on for several years now.. and which is so close to happening...

And it doesn't get passed..

We are YEARS from getting anything else that could help us.

There are other things going on.. but this bill is the biggie.

If it wasn't HUGE for our side... would the IDSA be putting so much effort into fighting it? No.

So PLEASE, if you have called 50 times... call again and make it 51 times.

Without EACH of you acting and helping... and supporting the bill... we can't get it done.

And our motto...

We won't go away!

And thank you!!!

[Big Grin]

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

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Snailhead
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Ok, help me. Do I call just my senators, my congressmen, my state reps? I'll do it. It would seem by the IDSA's letter that they do NOT like what may happen.

"You don't have Lyme" is NOT a diagnosis! That is so stinken' brilliant.

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'Kete-tracker
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betty- 'no forgot' I didn't have a list of ALL the states in front of me. That's why I said "I'm sure I left out a few".
(Actully, I wasn't sure if Iowa was IO or IA at the time)

Oh, & I DID include California... right after Wisconson. [Wink]

BTW, Does anyone know if Hawaii has any black-legged ticks?

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bettyg
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kete, i was just having fun with you!! i missed calif. ... yes, IA, is correct.


TINCUP,

i got a head start, MY federal house rep's health staff CALLED me about 1 of my many emails to them about ssdi.

but i worked LYME DISEASE in and you read my note in activism what all transpired about my mentioned UNDER OUR SKIN DVD AND CURE UNKNOWN BOOK; had my house rep WATCHED DVD/READ BOOK.

i'll call my senator's a little later; time to go renew my driver's license before i forget and pick up some free tickets to a jazz performance on 3-27.

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Tincup
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Hey snailhead..

You said... "Ok, help me. Do I call just my senators, my congressmen, my state reps? I'll do it. It would seem by the IDSA's letter that they do NOT like what may happen."

You are right. They don't like us pushing them around. They've got a LOT to lose and are fighting PATIENTS!!!!

That seems so insane!

Ok.. here is your mission if you chose to accept. Easy and simple.

[Big Grin]

Go to this site. Find your state and click on it.

http://www.cwork.com/index.php?option=com_content&view=article&id=122&Itemid=108

Call YOUR House Member if you know who it is.. and if not.. call as many as you want.

Tell the House Members listed there, this.. or something like it... ALWAYS being polite, of course.

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

My name is _____________. Please sign on to co-sponsor HR 1179, the Lyme & Tick-Borne Diseases Bill.

Thank you.

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

That's it!

And THANK YOU!!!!

[Big Grin]

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

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Janice70
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No, these patients didn't actually have Lyme disease, they had fibromyalgia! A disease for which there is a known cause, and a known cure! (sarcasm)
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Robin123
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So being that my fibro is being treated with longterm antibiotics, maybe we could start a new campaign for longterm antibiotic treatment for fibromyalgia!
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Tincup
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Janice..

Folks wonder why.. or complain that... I am sarcastic too much.

I am. No doubt.

But I deal with this JUNK every day... so it is REALLY hard not to be.

So, the choice is to be sarcastic... or just let my head explode!

[Big Grin]

Robin 14832694

I like that idea!!! It might just work!

Years ago I got to the point where I said it would be easier to make Doxy an OTC medication than have to BEG for help and watch so many people suffer because they were being blocked from treatment.

In some other countries you can buy antibiotics over the counter.

In the USA we have to first pay the middle, middle, middle man to get them to let us have what we really need.

I use to dream there were bubble gum machines in stores that you could put a quarter in... then twist the big knob.. open the little metal shoot...

And out would roll a weeks worth of doxy!

And the profits from the bubblegum machines would go to helping those who were already sick.

[Big Grin]

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

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nellypointis
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quote:
Originally posted by Tincup:
Years ago I got to the point where I said it would be easier to make Doxy an OTC medication than have to BEG for help

Tincup,

Although we know that abx are fed to pigs and chooks AS IF they were lollies (with all the terrible consequences of abx resistant bugs), but unfortunately the fact that abx create resistant strains of bacteria is what people like the IDSA are hiding behind to justify their position.

So IMO, abx are going to become harder and harder to get. Spain for eg, passed a law severly limiting pharmacists from selling abx directly to patients.

I suspect this is the ONE single aspect that is holding is back the most as far as Public Health Authorities are concerned. If we wanted statins instead of abx, I think they wouldn't put up such a fight.

Nelly

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Overtherainbow
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I am new here, have never posted though I have been following this site for more than 6 months. Love the freedom to believe in CAM or abx. Thank you. My point in this thread is that I am also following a blog by a doc where he has recently addressed long term antibiotics. He makes great points as to why using antibiotics for Lyme is not a reason for IDSA to stop LLMD's and other doctors from treating Lyme in this way. There is scientific evidence of Lyme/co-infections being helped by antibiotics. Many other diseases are treated long term with antibiotics that are NOT life threatening and the IDSA and CDC do not monitor or mention those illness. I didn't know if I should post the blog address. Great points, ALSO including Lyme being only one of like three diseases IDSA (AND/OR CDC) wants to have guidelines followed. Why? Of course we know the reasons... Hope my first post is appropriate.
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lakes592
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Over the rainbow yes, please post the link it sounds interesting. Glad you are joining in! I'm enjoying reading these posts while being sick in bed today. A few made me smile.

Take Care,
Ann

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

www.underourskin.com

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Leelee
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Hi Overtherainbow,

It's nice to have you join us.

This is a wonderful site for those of touched by Lyme.

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The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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