CT Attorney General to Investigate IDSA Guidelines [Archive]

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RuthHinWV

11-17-2006, 03:30 AM

Hi Gang, I just saw this post on the canlyme site & thought you all would like to read it. It is such a welcome sign!! Ruth in WV:)

http://home.businesswire.com/portal/site/google/index.jsp?ndmViewId=news_view&newsId=20061116005449&newsLang=en

November 16, 2006 08:00 AM Eastern Time

Historic Move by CT Attorney General to Investigate IDSA Guidelines Process
Gives Hope to Thousands of Lyme Disease Patients

Statement from Pat Smith, President, Lyme Disease Association

HARTFORD, Conn.--(BUSINESS WIRE)--The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Although unprecedented, the LDA feels this action is vitally necessary to protect the welfare of chronic Lyme patients nationwide whose treatments have been impacted by the stance taken by the IDSA. Their guidelines deny the existence of chronic infectious Lyme disease and list as “not recommended” most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients for any Lyme manifestation. Even some nutritional supplements should not be an option according to IDSA.

Clinical guidelines now drive the standard of care, and these IDSA guidelines have already been published on the CDC website. They are being used to deny treatment reimbursement and will have a continued chilling effect on the small numbers of treating physicians, since clinical discretion is not recommended in the guidelines.

The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics, nor do they take into consideration any other professional diagnostic or treatment guidelines such as those published by the International Lyme and Associated Diseases Society (ILADS), which discuss chronic disease diagnostic and treatment modalities. The IDSA also refused to allow patient or chronic disease-treating physician input into the guidelines process through the LDA and ILADS, respectively, although both organizations requested to be a part of the process.

The national LDA and its affiliates Time for Lyme (CT) and the California Lyme Disease Association and ILADS, a professional medical organization, had appealed to the Attorney General on behalf of patients and treating physicians. We are encouraged by the issuance of the CID, and we hope that this will lead to actions that will guarantee patients the right to be treated and support physicians’ right to treat using clinical discretion.

Buttons2

11-17-2006, 02:25 PM

RuthHinWV

11-17-2006, 03:43 PM

Hi Ruth, thanks for posting this. Hope you are doing OK. I'm not on the Lyme forums much these days. Spend alot of time researching spider bites though! I've given up on doctor's.....finally learned to just keep my mouth shut about possibility of Lyme. They don't want to hear it & I'm tired of the stress/despair!
Wishing you well,Buttons

Hi Buttons, I'm just hanging in there; I'm having some neuro problems right now. There are times when I type something, can't make my fingers do what my brain wants, then have to go back & correct mistakes; it's so much friggin fun!!:rolleyes: This all came about because I stoped my abx, a decision my LLMD & I made together. Well it took about 2 months then stuff started happening, so back on the abx. As luck would have it, I had an extra month of leftover abx, couldn't take them as strong as the LLMD wanted, so I started taking those.

I've lucked out, not wanting to make the 382 mile round trip any longer, I started looking for someone in this entire state & found someone within an hour of my home. I have an appt Nov 29th with her. As it turns out, she has Lyme & is a member of ILADS. I've stumbled into a good find!! It's almost as if she were Heaven sent!!:)

I'm a florist & I had gone back to work, but it exhausted me so I decided to back off. Now I'm sitting here with nothing much to do but think, so I'm back on the site trying to help as much as I can.

That's pretty much what's going on with me! Wish I had something more exciting to share!!:D

Take care, Ruth

blimeyitslymie

11-17-2006, 05:03 PM

Here's his email address:

Attorney General Richard Blumenthal
attorney.general@po.state.ct.us

Buttons2

11-18-2006, 01:29 PM

Hey, having a doctor with Lyme is great news! I'm wondering if she will be for or against taking B12,etc. to help with neuro problems.....

I'm still using herbs/vits but I take a break from everything when my stomach hurts too much. Had a headache (more like head pain) for over 2 weeks which was a new symptom for me.

Hang in there, you'll get better & be back to work before you know it!

Good luck,Buttons

Joe

11-28-2006, 05:05 AM

When will doctors start curing people?
When will insurance companies start paying for treatments?
:mad: :mad: :mad:

RuthHinWV

11-30-2006, 12:27 AM

When will doctors start curing people? When will insurance companies start paying for treatments? :mad: :mad: :mad:
Hi Joe, I'm not sure I have the answer to either question; but I do have an opinion.

I've been through several physicians I wanted to knock to the ground & put my hands around their throats until they admitted they didn't know the answer. NO, God forbid they should admit they didn't know or they are wrong!!

In my opinion, doctor's will start helping & curing Lyme patients when they understand what they were taught, that miniscule amount of info they learned in med school years & years ago, is now outdated & they need to spend some time researching. They don't want to take the time to do more research, reading, learning and/or helping those of us with Lyme. It's too easy, as I personally found out, to tell the patient they don't have MS, but let's put you on the drugs for MS just in case. HELLO, you don't take aspirin ahead of time just in case you get a headache, why then would you tell a patient to start injecting themselves with drugs that can cause damage to the heart muscle & restriction of the arteries. Doctors will start curing patients of any & all diseases when they start taking the time to spend with each patient instead of pushing them out the door after 10 minutes & grabbing their check as they go. When doctors don’t worry anymore about those huge paychecks, then maybe they will care enough to actually cure someone.

The insurance companies, well right now I can't complain. We’ll see what the new fiscal year brings as far as my coverage of physician & drugs. The insurance companies, however; are just like all the other big corporations raking in the dollars at our expense & the less money they pay out & the more money they bring in the bigger their wallets. They don’t want to pay out for “unnecessary” drugs pretending they actually care about all of us; instead they don’t want to pay out for long term anything because they actually care about their bottom line. It doesn’t have to do with whether a person is on the road to recovery or not; if you’re taking too much of their bottom line to pay for your treatment then they’ll cut you loose. Just like the doctors; when the insurance companies no longer care about those huge paychecks then maybe they will start caring enough to provide coverage for all medical treatment the doctor of choice gives the patient.

Your last line, do they want us all to lay down & die from Lyme, well that would make everyone’s day much easier now wouldn’t it? NOPE, we’re going to fight this fight, day by day, & keep up what we’re doing to get better. This must have been what it was like when patients were first starting to struggle with getting treatment for AIDS & any other controversial disease.

The first real plus I’ve had in a while, kinda suggesting what I’ve been saying all along, YES regular wood ticks do carry within their bodies those bacteria that cause Lyme disease & other infections. I had an appointment today, for the first time, with an LLMD just an hour from my home. She’s new to the fight, herself a Lyme victim, a member of ILADS, etc. She said she took ticks from her back yard area & sent them for testing. They were just the average wood tick, not deer ticks, & everyone she sent had Lyme bacteria in them. She sent them to an entomologist, an acquaintance of hers, at a college in a neighboring state. She lives just an hour from me; now if only I could take her words & slap my “old” (I got rid of him) family doc in the face & say, “See I told you so”. He rolled his eyes at me when I said I thought I had a wood tick on me & he said if it wasn’t a deer tick then I don’t have any tick borne infections; IDIOT!!! :rolleyes:

OK, Now I’m going to climb down off my soapbox!! I get dizzy up there if I spend too much time!!! I'm really a very calm person, but there are some things that get me wound up; I think this was one of those things!! :D Ruth in WV:)

Joe

12-01-2006, 05:30 AM

blimeyitslymie

12-01-2006, 11:50 AM

"The new guidelines deny the existence of chronic, infectious Lyme
disease and list as "not recommended" most of the conventional
medical treatments prescribed by physicians as well as alternative
treatments often chosen by patients. Even some nutritional
supplements should not be an option, they state."
======

http://www.prweb.com/releases/2006/11/prweb484859.htm

PR Web
Press Release Newswire
November 30, 2006

Lyme Disease Patients Denied Treatment Following New 2006 IDSA
Guidelines: Connecticut Attorney General Launches Anti-Trust
Investigation

Download this press release as an Adobe PDF document. [click on URL
below:
http://mediaserver.prweb.com/pdfdownload/484859/pr.pdf ]

Connecticut State Attorney General, Richard Blumenthal, files a
Civil Investigative Demand (CID) in an unprecedented move following
the October 2006 release of the Infectious Diseases Society of
America (IDSA) Lyme Disease Treatment Guidelines that are already
being used to deny Lyme disease patient care. Under the new IDSA
Guidelines, treatment is significantly more restrictive despite an
extensive body of medical research that clearly documents persistent
chronic Lyme disease and the benefits of long-term Lyme treatment.
The new IDSA Guidelines are being used as the basis to deny medical
care by physicians and deny insurance coverage for treatment. A Lyme
Rights Protest against the new IDSA Guidelines is scheduled for
Thursday November 30, 2006 from 12-3PM at Westchester Medical
Center/New York Medical College.

Ukiah, CA (PRWEB) November 29, 2006 -- In an unprecedented move,
Connecticut State Attorney General Richard Blumenthal filed a Civil
Investigative Demand (CID) on the Infectious Diseases Society of
America (IDSA) following the October release of the 2006 IDSA Lyme
Disease Treatment Guidelines. The Attorney General is investigating
possible anti-trust violations by the IDSA in connection with
exclusionary conduct and monopolization in the development of the
Lyme guidelines. "These guidelines may have a serious
anticompetitive effect, insofar as they prevent competing forms of
diagnosis and treatment," he says.

The new guidelines deny the existence of chronic, infectious Lyme
disease and list as "not recommended" most of the conventional
medical treatments prescribed by physicians as well as alternative
treatments often chosen by patients. Even some nutritional
supplements should not be an option, they state. Dr. Daniel Cameron,
a New York internist and Lyme specialist, worries that the IDSA
guidelines do not offer an answer for the thousands Lyme patients
left with a poor quality of life after their three- or four-week
treatment. "How can we, as scientists and physicians, turn our backs
on all the things we do not yet know about this complex emerging
disease and its long-term effects on individuals and our
communities?" he asks.

Clinical guidelines from powerful medical societies, like the IDSA,
now determine the legal standard of care that physicians must follow
in treating patients. The Centers for Disease Control (CDC) provide
a link to the IDSA guidelines on their official website. Many
patients treated under IDSA guidelines continue to be sick and
disabled. The guidelines are being used by insurers to deny
treatment reimbursement and by medical boards to revoke physician's
licenses. However, patient advocates say that access to care under
the guidelines will be the central issue as the guidelines prohibit
the exercise of clinical discretion.

Lorraine Johnson, an attorney and the executive director of the
California Lyme Disease Association (CALDA), stated, "It is
important to keep in mind that these guidelines were drafted by a
private medical society. This is a private organization mandating
matters of public medical treatment policy in a restrictive,
exclusionary and closed manner." The IDSA refused to allow patient
or chronic disease-treating physician input into the guidelines
through the Lyme Disease Association (LDA) and the International
Lyme and Associated Diseases Society (ILADS), although both
organizations requested to be a part of the process.

According to the CDC, Lyme disease is the leading cause of all
vector-borne illness in the US. During the last twenty years, the
annually reported number of adults and children diagnosed with Lyme
disease has increased 25 times, reaching 23,305 cases in 2005.
However, under-reporting is generally believed to be ten-fold.

CALDA joins the LDA in applauding Blumenthal's action. Pat Smith,
president of the LDA, explained that since the 2006 guidelines claim
that Lyme disease is easily treated with 21 to 28 days of
antibiotics, health insurance companies use them to deny treatment
reimbursement to people with chronic Lyme disease who sometimes need
extended treatment and patients nationwide are having claims
denied. "In the last two months I have received hundreds of emails
from patients and almost 18,000 people have signed our petition,"
she said.

The new IDSA guidelines do not acknowledge that complex bacteria
like Lyme disease spirochetes can survive in the body and the brain,
evading the immune system and short-term courses of antibiotics, nor
do they acknowledge any other professional diagnostic or treatment
guidelines such as those published by ILADS, which discuss chronic
disease testing and treatments. After the guidelines were published,
ILADS requested their immediate retraction, saying that the
guidelines committee selected research that agreed with their
opinion and ignored opposing views. Of 18,537 articles about tick-
borne diseases listed on National Library of Medicine website, the
committee looked at only 400, the letter said.

"Many recommendations in the IDSA guidelines are based on the
weakest evidence, namely opinion rather than scientific fact," said
San Francisco physician Raphael Stricker, MD, president of
ILADS. "The guidelines will make doctors afraid to diagnose or treat
Lyme disease, and this chilling effect will harm patients and
patient care."

A patient-run website called Lyme News summarizes the current crisis
from the patient perspective. They say the new IDSA
Guidelines "guarantee people will not be diagnosed and treated in
time, empower insurance companies to deny treatment coverage, and
threaten your physician's ability to treat." They have organized a
Lyme Rights Protest against the new 2006 IDSA Guidelines at
Westchester Medical Center/New York Medical College on Thursday,
November 30, 2006 from 12-3PM. Go to www.LymeNews.org for details.

To review and/or sign the LDA petition, go to
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php
?id=1.

A copy of the ILADS retraction letter is available at
http://www.ilads.org/press_releases.html
Choose October 25, ILADS Demands Retraction of IDSA Lyme Guidelines

About California Lyme Disease Association (CALDA)
CALDA, an affiliate of the Lyme Disease Association, is a non-profit
corporation that acts as the central voice for all tick-borne
disease issues in California and a supporting voice for national
issues. Through advocacy, research and education of the public and
health care professionals, CALDA seeks to prevent tick-borne
diseases, encourage early diagnosis, and improve the quality of
healthcare provided to people with tick-borne diseases. CALDA
publishes the Lyme Times, a lay journal that is distributed
nationally and internationally. For more information, visit
www.lymedisease.org

RuthHinWV

12-01-2006, 11:59 PM

Ruth - I have actually been hit by a doctor who I had been seeing for two years. He told me he never believed that I had Lyme and that he didn't want to see me again. He started screaming at me so I tried leaving his office. He started pushing me and even hit me in the back while I was stumbling at of his office.
Hi Joe, WOW; I've been yelled at by a neuro, but it was because I was trying to accept his "theory" that I had MS; this was in the beginning of everything. He yelled, "I didn't say you had MS, you might get it in the future, you don't have it now". He wanted me to go on interferon & steroids "just in case". :rolleyes: Fortunately for him I didn't have to sue him for malpractice; I have functioning brain cells & was able to see he was too far off base & started doing my own research to figure out what was wrong with me. I've heard from another Lyme victim who met a patient at her LLMD's office; this same neuro did the same thing to this other patient.

As for hitting, yeah, I'm sure in the seconds this was all happening you just wanted to get out of his office & away from this idiot. I can see how you reacted was the same way I would have reacted. However, in hind sight, I would have been kicking myself for not reminding him that physical assault was against the law & a lawyer or cop would be contacting him. I'd put a fear in him for his behavior. What a putz!!! What is with these guys? My favorite word for people like this; IDIOTS!!! :D

Like I said, they'd love for us to lay down & die; it would make their lives so much easier, but we're going to fight this & get better. I'd love to see each one of these "IDIOTS" contract Lyme. I wonder how they'd treat themselves since there isn't Lyme anywhere & it's all a figment of our imagination.

Ruth in WV:)

Joe

12-05-2006, 02:41 PM

As for hitting, yeah, I'm sure in the seconds this was all happening you just wanted to get out of his office & away from this idiot. I can see how you reacted was the same way I would have reacted. However, in hind sight, I would have been kicking myself for not reminding him that physical assault was against the law & a lawyer or cop would be contacting him. I'd put a fear in him for his behavior. What a putz!!!

Ruth - The doctor was white as a ghost when I left his office. No one hits me and pushes me around! Even if I could barely walk I was still able to scare him.