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» LymeNet Flash » Questions and Discussion » Medical Questions » A 'Cure' That Does Harm

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Author Topic: A 'Cure' That Does Harm
Al
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A 'Cure' That Does Harm
Gov. Rell shouldn't sign a bill protecting doctors who prescribe long-term antibiotics for so-called chronic Lyme disease.

By The Day Published on 6/17/2009


Most people diagnosed with Lyme disease are completely cured after less than a couple weeks of antibiotics, but those who complain of lingering symptoms ranging from aches and fatigue to memory loss sometimes are prescribed a lengthier but controversial regimen to treat the tick-borne illness.

State legislation that would in effect allow physicians to administer long-term antibiotics to patients they've diagnosed with chronic Lyme disease was approved by the General Assembly in early June and now awaits Gov. M. Jodi Rell's signature.

While we sympathize with those who put their faith in such treatment, there not only is scant medical research to support its efficacy but there is ample evidence that overuse of antibiotics is a dangerous practice because it makes the drugs less effective against bacterial diseases and infections.


Therefore we urge Gov. Rell to veto or delay signing the measure, and encourage legislators and doctors to come up with a better strategy for dealing with an emotionally charged medical challenge.

In an attempt to reconcile sharp differences in the medical community about Lyme disease treatment, the bill did manage to gain the support of some warring factions. The measure does not actually suggest that long-term antibiotics should be used to treat chronic Lyme disease, but it would protect doctors who prescribed such a regimen from state sanctions. In our view such penalties should remain in place.

Before deciding whether to sign the bill the governor should at least wait until July 30, when the Infectious Disease Society of America holds hearings on the issue. The organization has in the past advised doctors against chronic Lyme disease diagnosis and treatment, suggesting that symptoms may be due in fact to other factors such as an autoimmune disorder. But now, under pressure, it is considering revising its guidelines.


Some of that pressure has come from Connecticut Attorney General Richard Blumenthal, who has challenged the society's findings and negotiated an agreement that calls for an outside arbiter to help draw up new guidelines. Mr. Blumenthal, who supports the state bill, contends that the guidelines unfairly limit doctors and favor insurance companies that restrict coverage for various Lyme disease treatments.


While we agree that doctors should be free to make diagnoses, they should not be authorized to administer unproven treatments that put their patients and the rest of society at risk.

At the same time, in this region that has the ill fortune to be considered the birthplace and epicenter of Lyme disease, we must recognize that many who contracted the affliction believe they suffer long-term consequences. More research is needed to provide them with better diagnoses and more effective treatment of their maladies.


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


[email protected]

Posts: 789 | From CT, | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
CherylSue
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Let the Lymies suffer then! Forget the multitude who have round relief and remission from long term abx.

Who is "THE DAY" anyway? I bet they've never had Lyme Disease.

CherylSue

Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Al
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The "DAY" is a newspaper I believe in lyme CT.

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

There have been many replies posted on their site so far but more should be sent.

click on Editorial

Posts: 789 | From CT, | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Ocean
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OK, who do you think really wrote this garbage?

a) Wormser

b) Shapiro

My guess is Shapiro for some reason, maybe they both did though, you never know.

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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paulieinct
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Yes, one of the Worms wrote it, I'm sure. They are in full self-preservation-at-all-costs mode. You can see the desperation in their outrageous statements. Are they worried about the huge class-action lawsuits? You betcha. Maybe even Crimes Against Humanity charges at the World Court. When the lid totally blows off this thing, there will be hell to pay.

[ 06-18-2009, 12:43 AM: Message edited by: paulieinct ]

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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gemofnj
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Al,

Thanks for posting this!

I just submitted my comments to this horrible article. UGH.

We will never get medical agencies to change their philosophies, get better testing, labs, treatment, or doctors if people dont speak UP.

Please send in a comment! Papers love controversies.

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
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For this to be generated from a CT paper is completely mind-boggling...

I will say that some of the responses to the letter did not do us any favors. The responses need to be intelligent but not reactive...some were over the top with emotion....

--------------------
"Whatever can go wrong will go wrong."

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Gerifrog
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-
Unbelievable! We're fighting for our lives & they publish this trash. Their reporter should be taught how to research.

I wonder how many Lyme victims will be harmed by this ill informed article?

Geri
-

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liesandmorelies
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My guess is

A and B(they did it together)!!!!!!

Perhaps more of us can send in responses.

The paper makes it sound like only a few of us are suffering and most get well quickly.

Has the paper told anyone yet, where they got this from? Usually they would have to disclose that information right?

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

Posts: 869 | From nor - cal | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
liesandmorelies
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I just went back and read all of the comments. There are some very good ones. I think we should could keep sending comments.

Numbers speak volumes. Funny how the vast majority of the comments are in our corner.

Good job everyone!!!! =)

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

Posts: 869 | From nor - cal | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
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What's more upsetting is the fact that this paper's affiliate, WTNH, ran a TV spot a couple of months ago sympathizing with Lymies who have to leave CT for treatment. Now they are parroting misinformation. What an unfortunate disservice! They really need to get their heads together on this...

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
liesandmorelies
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Lymeorsomething,

It makes me wonder when they can see-saw back and forth like that, if they are receiving money for this or something from this point of view.

I just can't believe they would run a spot one month and then do a complete 360. Very strange and makes me question the motive.

Will the paper just print anything???? HMMMM

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

Posts: 869 | From nor - cal | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Tracy9
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Ummm..is the author stupid?

It says "let's hope Gov Rell waits until July 30th" referring to the IDSA hearings.

If she doesn't sign the bill within 15 days, it automatically becomes law.

They are dumber than I thought.

--------------------
NO PM; CONTACT: [email protected]

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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AliG
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Someone should let Pam know that the poster calling themselves "the voice of reason" states that her book contains false information. I'm sure she could tear that poster down, but good.

They also say that "Under Our Skin" contains false info.

Perhaps they can be traced & sued?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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someone sent me this post, and i read ALL letters.

of course, i could NOT read all that dam continuous text run together; so would have to go to the next one.

i wrote a short reply to continue on following successive posts, but it didn't go!! something about wrong url....

i see someone posted their email; i'll try that way. but i'll post what i started here so i don't lose everything!


Boy, does this HOG WASH STINK, which was written by a IDSA doctor! It's very evident which side this editorial writer is on.


There was NO research done more than 10 minutes at the most. You are so wrong on all your ILL-BASED "FACTS"!


I'm very disappointed this website is set up where it's CONTINUOUS TEXT where you can't have set paragraphs & double spacing making it COMPREHENSIVE FOR "NEURO" LYME PATIENTS who can NO LONGER READ OR COMPREHEND due to decades of lyme.


I'll continue on my next post since I can't read back what I typed above even! shaking my head.

BettyG, Iowa lyme activist

***************************

and this from wormsor or an imposter!!

notice the way they state "lymenuts" which is what LNeurope call us always on THEIR board; so smells FISHY TO ME!!


R E A D E R'S C O M M E N T S...LAST 2 POSTS SHOWN ON BOARD TODAY!!

Posted - 6/19/2009 4:12:12 PM

Let's hope Dr. Gary Wormser has a "Dr." in front of his name cuz he has a PhD....not a medical license. Small, but vocal? You need to get out in the world a bit more often Mr......you think this posting of comments is all of us? Guess again. It is you who is in the minority here, not us.
Wendy Ingraham
Whitingham, Vermont


- 6/19/2009 4:28:10 PM
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
- 6/19/2009 3:56:41 PM
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BugBarb
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If the critics think lyme is such an easily cured disease, they ought to put it to the test.

they ought to infect themselves, wait a couple of months and then take the "two week cure".

let's see how they fare after that.

--------------------
Lyme is like the flu. You can get it and recover, but you can always get it again.

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Shosty
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Once again I am embarrassed by the rantings of Lyme sufferers, both on this thread and in the comments to the article. I think we all have a better chance at health if people keep their comments more "professional" and show some open-mindedness. This is all much more complex than just some bacteria that can be eradicated with meds. Many of us really do not get any better with antibiotics over long periods of time, and the antibiotics have caused problems for many of us as well. Some of us have positive Lyme tests and positive autoimmune tests, at the same time. Every case is different, and there is rigid orthodoxy on both sides.
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Lymeorsomething
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Shosty, I couldn't agree more. We have to remain intelligent in expression and not let emotions take over.... More people will care this way...

The good thing of course is that the Gov signed the bill...so that editorial is no longer that important...

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
   

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