Daily Archives: May 8, 2008

Facts about Lyme Disease: What You Need to Know

Hat tip and kudos to Vermont Lyme Network led by Dayle Ann and Nancy.

I've been studying up on Lyme disease over the last year after meeting two women — both in their early 30's — who suffer from chronic Lyme.  In learning more about it, I became convinced that my father, who suffers every day from a variety of seemingly unrelated symptoms, became a chronic victim after he visted his doctor with a rash from a bug bite — and was never tested!

Lyme disease is here in Vermont, and there are still a lot of doctors who are not proactive in recognizing it.  Last year, the State Epidemiologist sent out questionnaire to doctors in order to discover their knowledge base.  Of course, 85% responded in a way to suggest that they are up to speed on the subject, but frankly, I could have passed the test without ever attending medical school since the questionnaire was titled, Lyme Physician Survey Report for Providers.  Talk about giving away the diagnosis before listing the symptoms.

So, my father suffers needlessly, unlike the President who was diagnosed and treated immediately, which is really the only time to prevent chronic lyme from setting in.

Below the fold, what you need to know, and a press release on last week's settlement in the first-ever anti-trust investigation against a medical society's guidelines development process involving suppressed scientific evidence and corruption by a commercially driven medical panel.

FACTS ABOUT LYME DISEASE

1.  Lyme disease is the most widespread and fastest growing vector borne disease in America.

2.  Lyme desease is present throughout Vermont. “Case definition” statistics do not represent the true occurrence. CDC estimates that at a minimum, nationally the actual number of new cases annually is at least 10 times those that meet the requirements for reporting. Underreporting is common for other reasons as well, misdiagnosis being one of them.

3.  There are two recognized sets of diagnostic and treatment guidelines, but only one is being made available to physicians in Vermont. Physicians need to know about both sets of guidelines, in order to make informed decisions in treating their patients.

4.  Treated early and adequately, Lyme disease can be cured. But once it disseminates from the site of infection, it can be devastating in consequences, and difficult to treat. Even early treatment sometimes fails.

5.  People with inadequately treated chronic or relapsing Lyme disease frequently experience a quality of life equal to or worse than that of people with other chronic illnesses such as ALS or MS.

6.  The loss of jobs, homes, relationships, social support, and dependence on public resources result not only in severe economic losses to the families involved, but to society as a whole.

7.  Additional research on the dynamics of Lyme and other tick-borne diseases, and on various treatment modalities, is critical to increase our understanding of how to treat these diseases more effectively.

8.  There are far more cases of Lyme disease, with more far-reaching consequences, than there are ofWest Nile. Yet the funding for West Nile far exceeds that for Lyme and associated diseases at both state and federal levels.

There is a bill in Congress, HR 741, that would address some of these
issues, but recognition is also needed at the state level.

For more information contact:
Vermont Lyme Network
vermontlyme@vermontlyme.org
www.vermontlyme.org     

Additionall, for those who suffer chronic lyme who have also had their diagnosis and alternative treatment summarily dismissed, there was a ground breaking settlement just last week.

Watch out for ticks, and if you get a bullet shaped rash, get to your doctor immediately and demand a test for Lyme.  The particular type of rash is in fact a diagnosis all by itself.

Here's the press release on last week's settlement:

Hartford, CT – Patients' rights groups today hailed Connecticut Attorney General Blumenthal's announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines ofthe Infectious Diseases Society of America (IDSA).

“My office uncovered undisclosed financial interests held by severalof the most powerful IDSA panelists,” said Blumenthal. “The IDSA's guideline panel improperly ignored, or minimized, consideration of
alternative medical opinion and evidence
regarding chronic Lyme disease, potentially raising serious questions about whether therecommendations reflected all relevant science.”

The groundbreaking settlement announced today forces a complete review of the IDSA guidelines by a new panel free from conflicts of interest,specifically excluding previous panel members. This panel will
consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine.

“This settlement makes it clear that the IDSA guideline development process was corrupted by a commercially driven panel that excluded evidence supporting longer term treatment of Lyme disease,” said attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association (CALDA). “This settlement allows suppressed scientific viewpoints and evidence to be heard, and it is promising news for patients.”

This is the first-ever antitrust investigation against a medicalsociety's guidelines development process.

“We congratulate Attorney General Blumenthal for exposing the IDSA's conflicts of interest and helping reduce the suffering of Lyme patients everywhere,” said Pat Smith, president of the national Lyme
Disease Association (LDA). “The IDSA guidelines are dangerous for patients who suffer longer-term Lyme symptoms that do not fall within the IDSA's narrow disease definition.”

The IDSA guidelines are treated as mandatory within the medical community. More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical
boards. The guidelines can also result in financial problems for patients, since insurance companies refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions.

The majority of individuals involved in the IDSA guidelines development process held direct or indirect commercial interests related to Lyme vaccines, patents, and/or test kits, and did not take
the opinions or experiences of the competing Lyme groups into account. While the announcement of a settlement comes as a huge relief to suffering Lyme patients, the case has much broader implications for a health care system that often contends with conflicts of interest in guideline processes – guidelines which are often used by insurance companies to limit diagnosis and treatment options.

“Today's settlement marks an important victory for all patients who suffer Lyme disease, but it is also a victory for anyone concerned about health care,” said Johnson. “Commercially driven guidelines that
limit patient treatment options are a major issue today in healthcare, and this decision marks an important step towards addressing it.”

The national Lyme Disease Association, (LDA), CALDA, and Time for Lyme are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of education and support services available for this newly emerging infection.

 

Online Obama Delegate Candidate Information…

Hello Fellow Obama Delegates!

In order to help Vermonters make informed voting decisions at the VDP's State Convention on May 24th, I've begun a list of national delegate candidate statements at the Vermonters For Obama website:
http://vermontersforobama.org/delegates

A few candidates have provided information already, and I hope that many of the more than 100 national delegate candidates take advantage of this opportunity, as well.

So, please check the Vermonters For Obama candidate page from time to time over the next two weeks to learn more about the people who are vying to represent Vermont and to have the honor of casting their votes for Barack Obama at the Democratic National Convention in Denver.

Are You a Delegate Candidate for the National Convention?

If you are, I'd like to offer you space on the Vermonters For Obama website to help you make your case.

Just send me an email at info@vermontersforobama.org with a statement in support of your candidacy — and I'll post it online for you.

If you participate, your name will be posted in alphabetical order at http://vermontersforobama.org/delegates and will be linked to your candidate statement.

You can send statements either as text in an email, a Microsoft Word or PDF attachment, or just a link to another website, whichever you prefer. Be sure to include your full name and feel free to include a photo, too, if you wish.

If you have any questions, please don't hesitate to ask.

Good luck and hope to see you all on May 24th!

Neil Jensen
Vermonters For Obama
Monkton, VT

P.S. Don't forget to participate in the Obama campaign's Vote for Change National Voter Registration Drive this Saturday in Burlington…

Sign up for the Vote for Change Kickoff: Burlington Voter Registration Drive (Official Event)

With this election, we have the chance to ensure that more voters than ever take an active stake in our country’s future. On May 10, Obama for America will launch Vote for Change, a national voter registration and mobilization drive with kickoffs in all 50 states. This event is the kickoff for our area. After a brief training, we’ll hit the streets to register voters. Please join us!

Time: Saturday, May 10 at 12:00 PM
Duration: 3 hours
Host: Jeff Coleman
Location:
In Front of City Hall (Burlington, VT)
149 Church St.
Burlington, VT 05401

100,000 will die in Myanmar: Photos from the Scene

This morning I rec'd an email from SPS who asked me to share.  Thank you, Steve, for helping get some real-life pictures to us, and for pointing readers to a place where they can offer help. 

These photos were taken by employees of an AmericanNGO, Pact, – one of the few with offices in Myanmar. The scale of the catastrophe and suffering are simplyoverwhelming.

 Pact has set up a link on its web page (http://www.pactworld.org/cs/help_myanmar) to provide more information on the relief effort, but suffice itto say that right now everyone is scrambling.

best,
Steve

 

Additional photos are posted on WaPo; but the main point is to get  the word out that Mynmar will likely loose over 100,000 people in the storm's aftermath, and that donations can be given through Friends of PACT/Myanmar.

For more information, go to:   http://www.pactworld.org/cs/help_myanmar

Why do for Vermonters …

when you can do for a huge, out of state corporation?

Predictably Douglas has vetoed a bill that would have told the owners du jour of Vermont Yankee to be fiscally prudent. Apparently the guv is quite happy putting Vermonters at risk while Entergy plays fast and loose with corporate spinoffs that will insulate that huge corporate entity from any future responsibility.

Once upon a time I believed in a fairy tale. In the mid nineties I had a number of conversations with Douglas in the form of interviews for a local radio show I hosted. I found Douglas to be witty, intelligent and honest.

Boy, Douglas sure destroyed those notions over the years since.

This year must be the year that Vermonters like you and I get the message out that Douglas is not that affable next door neighbor he wants us to believe he is; instead Douglas is the anti-Vermonter, pro-huge corporate, radical using political opportunism to advance a failed fiscal policy.