New book "Junk Science" and New Lyme Disease Bill

New Book Exposes "Junk Science," Conflicts of Interest, Disease Guidelines Affecting Millions

Critical evidence revealed about IDSA guidelines, science, researchers examined in recent Anti-Trust Investigation

MADISON, Wis., March 6, 2009 - Midwest author, researcher, and Lyme patient PJ Langhoff has released a scientific expose revealing the politics, conflicts of interest, academic ties, research, and IDSA guidelines for Lyme disease. Third in a series, "The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?"exposes key evidence offered during CT Attorney General Richard Blumenthal's anti-trust investigation into the Infectious Disease
Society of America's (IDSA) clinical practice guidelines for Lyme disease; findings which called the guidelines formation process "flawed."

Smith Unveils Lyme Disease Bill
February 27, 2009

FOR IMMEDIATE RELEASE
Contact: Jeff Sagnip (609) 585-7878
http://chrissmith. house.gov/

CDC Data: Cases on the rise, highest among kids ages 5-14

WASHINGTON, D.C. - Congressmen Chris Smith (R-NJ) today announced the introduction of a bill he wrote to combat Lyme disease, and thanked original co-sponsors Bart Stupak (D-MI), Frank Wolf (R-VA) and Tim Holden (D-PA).

Smith is the sponsor of the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009." The measure, H.R. 1179, would expand federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee. Smith, Stupak, Wolf and Holden are co-chairs of the House Lyme Disease Caucus.

H.R. 1179 authorizes a much needed increase in total research and education of $100 million over five years. The bill also contains measures to ensure that resources are expended effectively to provide the most benefit to people with Lyme and other tick-borne diseases. It also seeks improved surveillance and prevention and clinical outcomes
research to determine the long-term course of the illness and effectiveness of different treatments. The Tick-Borne Diseases Advisory Committee would ensure coordination and communication among many federal agencies, a broad range of medical professionals, and patients.

"Lyme is one of the most prevalent diseases in the U.S. today," said Smith. "About 220,000 Americans develop Lyme disease each year, and we suspect that number is a conservative estimate. This bill provides a comprehensive national effort to step up the fight against this ever-growing threat. My state of New Jersey is particularly hard hit."

While Lyme accounts for 90 percent of tick-borne diseases in the U.S., the same tick species spreads other diseases, such as anaplasmosis and babesiosis. Other tick species spread diseases, such as Rocky Mountain spotted fever and southern tick-associated illness. More than 30 affiliate organizations of the Lyme Disease Association Inc.,
headquartered in Jackson, N.J. in Smith's district, support the measure.

"I am pleased to join my colleagues on the Lyme Disease Caucus in introducing this legislation to help prevent, accurately diagnose and effectively treat Lyme disease and other tick-borne illnesses that impact more than 200,000 Americans every year," Stupak said. "Although Lyme disease receives little attention, cases remain on the rise in the
United States and in 63 countries around the world. Devoting modest resources to education and prevention will save us millions that would
otherwise be spent on treatment down the road."

"Federal efforts to address Lyme Disease should be a priority," said Congressman Wolf. "This legislation, which will create a Lyme and
Tick-Borne Disease Advisory Committee at the Department of Health and Human Services and authorize funding for the development of a more
sensitive and more accurate test to diagnose this dreaded disease, is critical. Not only is this legislation aimed at treatment and research to assist those suffering from Lyme, it would also heighten education and awareness efforts to ensure those at risk of being infected know how to protect themselves and their families."

"This legislation represents years of work with the Lyme advocacy community to reach consensus on how to best move forward," said Rep. Holden. "It aims to deliver on promises made to Lyme patients and their families to better focus the federal government's efforts on detection and research for more effective treatments."

The Centers for Disease Control & Prevention (CDC) estimates that only 10 percent of Lyme cases meeting this criteria may be reported. Lyme
disease can lead to chronic illness and can affect every system in the body, including the central nervous system. Advanced symptoms include
arthritis of weight-bearing joints, neurological and cardiac problems, encephalopathy and memory problems. The CDC has determined that from
1992 to 2006, the incidence of Lyme disease was highest among children aged 5 to 14 years of age.

- -

FOR IMMEDIATE RELEASE
Contact: Jeff Sagnip (609) 585-7878
http://chrissmith. house.gov/

To say it is in it's infancy is putting it politely. I went through five different doctors, and had to travel in the end, to get an accurate diagnosis. That doesn't include the mental health people I was sent to see as a result of my doctors thinking it was all in my head.

An infected person isn't even supposed to get localized injections of steroids. Yet they gave me oral steroids to treat the arthritis, which is SO contraindicated for those with Lyme's it isn't funny. When I read up on the cutting edge treatments being recommended at the CDC website as well as standards.gov, I realized my physicians were working with 10 to 15 year old information in most cases.

I actually had to print what I had found off and bring it to the doctor, and he ended up agreeing to more antibiotic therapy when I failed to show any cessation of symptoms after the initial 30 day treatment. It wound up being close to a year before I went off them.

One if five do not get the bullseye pattern lesion, and about the same amount test negative for any test we have at this time. Those are the facts. I don't know what the numbers are, but there are a large number of people being shuffled off to psychiatrists after a sero-negative test who are being left untreated for want of a $25.00 bottle of antibiotics.

Doesn't mean they don't have it, but they treat the test like the word of God in my experience. Even though they will admit it is only about 80% accurate. That leaves one in five left hanging in the wind with a disease that will likely kill them.

I spent three years telling specialists they were wrong when they looked me in the eye and told me nothing was wrong with me. Thank god I had a GP who kept up the referrals even when he believed the same thing himself. Had I lost my moxie at any point, I would likely either still be infected, or dead.

I didn't sue because after I looked into it I realized the entire field of testing for Lyme is hit or miss. My doctor admitted he would change the way he would look at treatment of potential sero-negative infected people a lot differently in the future. Good enough for me.

As someone who is intimately aware of the poor accuracy of testing, the misinformation, and the consequences of a misdiagnosis, I commend Congressmen Chris Smith (R-NJ) Bart Stupak (D-MI), Frank Wolf (R-VA) and Tim Holden (D-PA) for their efforts.

'The Disease With A Million Faces' is at epidemic proportions, yet we hear next to nothing about it. Or the co-infections that can go along with it. Sorry for the length of my reply, but it is an issue people need to know about imo.

If one does not know how to navigate the system, and does not remain a proactive part of their own treatment, it can cost them their life.