Bethesda, MD September 30, 2008 — The International Lyme and Associated Diseases Society (ILADS) today officially launched a physicians training program with the goal of decreasing incidence of chronic Lyme disease. The training program intends to train more than one hundred physicians over the next five years. The program has been underwritten by a grant from New-York-based Turn the Corner Foundation Turn the Corner, an organization dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Increasing the number of physicians educated on the diagnosis and treatment of Lyme disease is a key goal in the fight against chronic Lyme disease because advanced cases of Lyme are often the result of misdiagnosis or under treatment soon after a tick bite. Recently discredited treatment guidelines authored by the Infectious Disease Society of America (IDSA) reflect a narrow view of Lyme disease, making it difficult for physicians not well versed on the complexities of the disease to recognize symptoms and provide adequate treatment. There are no accurate diagnostic medical tests for Lyme disease.

The ILADS/TTC Physician Training Program represents the second phase of ILADS campaign to prevent chronic Lyme disease. The campaign, launched this summer with the release of a guide for consumers and health professionals ILADS Top 10 Tips for Preventing Chronic Lyme Disease, intends to raise awareness of the risks associated with the disease, provide prevention guidance to consumers and training for medical personnel.

Evidence-based Medical Training:
ILADS Physicians Training Program is designed to enhance clinical expertise for physicians with established medical practices. Curriculum is based on ILADS’ evidence-based treatment guidelines and focuses on the importance of hands-on experience complemented by thorough review of quality, peer-reviewed literature. During the one-two week program, participants partner with a designated ILADS Lyme literate physician and participate in the diagnosis and care of a variety of challenging early and chronic cases.

A pilot version of the program was launched in 2004. To-date, approximately 100 physicians representing a variety of geographies in the United States have successfully completed the program.

"Effective treatment of Lyme disease requires a comprehensive approach to patient health care," said Maureen McShane M.D, a family practitioner in Chazy, New York. "ILADS’ physician training program was invaluable for teaching me how to better assess, diagnose and treat Lyme disease and possible co-infections."

Applications for the training program can be obtained via email lymedocs @ aol.com.

Large Crowd Expected at 2008 Conference:
ILADS 2008 ninth annual conference is scheduled for October 18 and 19, 2008 at the Cathedral Hill Hotel in San Francisco. Several hundred medical professionals representing a myriad of specialty areas are expected to attend. Entomologist Willy Burgdorfer, who is credited with discovering the bacteria pathogen that causes Lyme disease, will be keynoting the conference.

The conference is intended to foster dialogue and collaboration among researchers and medical professionals who work with Lyme disease patients in various settings. The program will focus on providing updates in clinical understanding and treatment techniques. Attendees eligible for continued medical education (CME) credit can earn 9.5 credits.

ILADS conference program and continued medical education credit information is available on the ILADS website.

About ILADS:
ILADS www.ilads.org is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

About Turn the Corner Foundation:
Turn the Corner Foundation www.turnthecorner.org is a not-for-profit public charity founded in 2002 by Staci and Rich Grodin, with headquarters in New York City. Turn the Corner is a leading national fundraising organization for research projects that focus on innovative treatment and diagnostic options for Lyme disease and other tick-borne diseases. Through partnerships with other organizations, Turn the Corner is also involved with outreach, education and awareness efforts throughout the country.

Media contact:
Pam Kahl
pam.kahl @ verbal800.com
503.284.1534

"Lyme disease has become a major epidemic in this country," said Dr. Cameron."It is a complex and debilitating disease for many people.As president of the board, I hope to help bring researchers and practicing physicians together to identify better ways to diagnose and treat Lyme."

Cameron is an attending physician at the Northern Westchester Hospital and has served as an ILADS board member for the last six years.Cameron has made many contributions to clinical research on Lyme disease.He has pioneered the field of clinical epidemiology in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials.He continues to devote much of his research time to improving the outcomes of Lyme disease patients.

Cameron succeeds Dr. Raphael Stricker, who has served as ILADS president for the last two years.

As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.

According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn’t been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body’s immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.

The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others’ work."

Posted in Zimbio

From  Leslie and Tracy’s website at Lymefighters.org

THANK YOU MY WONDERFUL, BEAUTIFUL  SISTER, FOR BLESSING ME WITH 41 YEARS OF YOUR LIFE.  YOU’VE SUFFERED WITH LYME AND TICK-BORNE ILLNESS FOR SO LONG.  PLEASE WATCH OVER ME AND GIVE ME STRENGTH, AS I FIGHT THIS BATTLE 

"IN MEMORY OF YOU".

LESLIE RAE WERMERS

DOB: 07-07-1967

PASSED AWAY – 11-02-2008

LOVING SISTER; DAUGHTER; AUNT; PARTNER, PARENT AND FRIEND.

YOU HAVE TOUCHED SO MANY.

View a video tribute from Under Our Skin

Chronic Lyme cases take time

August 5, 2007

Around 30 patients and family members gathered for the fourth annual Lyme Disease Symposium. The high-profile keynote speakers included Pat Smith, president of the Lyme Disease Association; Dr. Brian Fallon, the director of the Lyme and Tick-borne Diseases Research Center at Columbia University Medical Center, and Dr. Daniel J. Cameron, an internist, epidemiologist and clinical researcher.

The physicians described an evolving but still incomplete understanding of the disease. There’s not even a way to determine when, or if, a patient is cured. "A blood test is not helpful to say when Lyme disease is over," Cameron said in response to a parent’s question. "There is no test to say, "’I'm done,’ or ‘I’m half done’." He noted that many of the biological markers that are elevated in Lyme disease are also elevated in other conditions.

Lyme disease wreaks devastation on the human body. Its cause arthritis in children and adults, neurological problems such as fatigue, memory loss, migraines and searing pain, and psychiatric symptoms including depression, dementia, panic attacks and obsessive-compulsive disorder.

The disease has been around for decades; Cameron recalled that an investigator found evidence of the bacterium in some mouse ears in the Museum of Natural History that dated from the 1920s or ’30s. But recently Lyme has begun to spread.

Smith cited United Nations studies "linking an increase in previously suppressed infectious disease with … global environmental changes." Forest fragmentation has contributed to a loss of predators such as wolves and birds of prey that held the white-footed mouse population in check. The deer tick, which transmits Lyme disease, feeds on deer but doesn’t get the infection from them, Cameron observed. The tick gets infected from mice.

A four-year World Health Organization study concluded that "deforestation and climate-induced habitat change" are affecting the carriers of diseases such as malaria and Lyme disease, Smith said. Studies found that Lyme disease is prevalent in rural Senegal, Mali and Mauritania. A report from Sweden noted that ticks are now found near the Arctic Circle. Lyme disease is the most common vector-borne disease in the United States.

The divisions in the medical community over Lyme disease begin with diagnosis and extend to treatment. The criteria that the Centers for Disease Control and Prevention use for surveillance include: a case with a "bull’s-eye" rash greater than five centimeters or a case with at least one manifestation (cardiac, neurological, musculo-skeletal) that is confirm by laboratory testing – a positive ELISA (enzyme-linked immunosorbent assay) followed by a test known as a "Western blot."

Some doctors are unwilling to make a diagnosis of Lyme disease unless the symptoms meet the CDC’s guidelines. Others, including those at the symposium, believe the criteria are too narrow and exclude many patients who are infected. As a result of these differences, there are now two sets of treatment guidelines, a set developed by the Infectious Diseases Society of America, and those that Cameron wrote for the International Lyme and Associated Diseases Society.

The CDC states that its surveillance criteria are not intended for diagnosis:

"Surveillance case definitions establish uniform criteria for disease reporting and (1) should not be used as the sole criteria for establishing clinical diagnoses; (2) should not be used in determining the standard of care necessary for a particular patient; (3) should not be used as setting guidelines for quality assurance or providing standards for reimbursement."

One result of the misuse of the surveillance criteria, Smith said, is that health insurance plans deny payment for treatment of patients who don’t meet the narrow standards. (In the case of chronic Lyme disease, treatment can run to tens of thousands of dollars.) When insurance plans do pay, they typically base payment on the guidelines developed by the Infectious Diseases Society of America, which call for briefer and less expensive treatment. The issue has become so contentious that in Connecticut, where Lyme disease was first identified, the attorney general has issued a "civil investigative demand" against the society, charging that the guideline developers had a commercial interest in them.

Fallon, who is the director of a four-year study of brain imaging and treatment of persistent Lyme encephalopathy funded by the National Institutes of Health, noted some of the tantalizing leads suggested in the study’s first year, such as the possibility of a test that may predict who will get better with several weeks of intravenous antibiotic treatment. Other findings are puzzling. The center has confirmed that repeated antibiotic treatment helps patients, but, Fallon said, "We don’t know why it’s happening."

A member of the audience asked, given the uncertain state of knowledge, if the doctors would suggest a course of action for people who suspect they have Lyme disease.

"It’s important to find out what the options are at the first visit with the doctor," Cameron said. "Even if the doctor says they’re only going to have one plan, not to treat unless they get a Western blot, it’s nice to know there are alternatives."

Cameron recommended going back for a follow-up visit 10 days later if symptoms persist. "The doctor may change his mind or look deeper," he said.

Cameron’s third suggestion was that if a person still feels sick but doesn’t have the diagnostic bull’s-eye rash, to "make sure you don’t get dismissed too quickly" and involve a neurologist or other specialist. "There are different perspectives on how to treat it," he said.

Fallon added that if symptoms involving more than one system are present, such as depression and joint problems, Lyme disease is likely to be the cause. "There are not many things that can cause brain problems and joint problems at the same time," he said. On the other hand, he said, if there’s no pronounced fatigue, it’s probably not a persistent Lyme infection.

The doctors had few concrete answers to a father’s question about why some patients get better and some relapse, other than to note that the longer the gap between infection and treatment, the greater the likelihood of relapse.

Dr. Stephanie Holzman, a veterinarian and one of the organizers of the symposium, said she had some answers, "as a vet and a Lyme disease patient." Holzman sees dogs and horses with Lyme disease that have "all sorts of symptoms or lack of symptoms," she said. If a dog comes in with kidney failure, she knows it will die. Other dogs come in limping because of an affected joint and after being treated with doxycycline, "They’ll never look back." A horse with joint pain will survive, she said, but will never race again. "One of the hot topics at conferences is why we see so much variation in symptoms."

Before she was infected with Lyme disease, Holzman ran three marathons. "I’m never going to do those activities again," she said. It took her 18 months to get diagnosed, and by the time she started treatment, her joints were damaged.

Holzman said she was helped by doctors who "collaborated and networked" in treating her. "I’m not where I was, but I’m a lot better," she said. "It stinks not to be a racehorse anymore, but you can still have a really good life."

Source: timesargus.com  

Many people look at deer as harmless, bushy-tailed, vegetarians that quietly meander through the woods just looking for something good to munch on. While all that may be true, the overpopulation of these quiet forest dwellers is becoming a problem throughout Fairfield County.

A recent deer count done by the Connecticut Department of Environmental Protection found about 29 deer per square mile throughout the county. The department assumes that it misses about 50% of the deer as it looks at an area from a helicopter, which would make the actual population about 58 per square mile — a higher population than other counties in the state.

Greenwich resident Kristen Manolis was involved in a car accident when a deer jumped in front of her car in January. She suffered a concussion that caused headaches and nausea for months after the accident.

Ms. Manolis said she’s an animal lover, but is concerned about the overpopulation of deer, as she often sees about 30 deer in her or her neighbors’ yards at a time.

She said it’s a problem when it comes to Lyme disease and a serious problem for motorists.

A higher population of deer means a higher prevalence of Lyme disease.

Dr. Gloria Scholl, chairwoman of the Fairfield County Municipal Deer Management Alliance, said there is a direct correlation between deer populations and the prevalence of Lyme disease in communities throughout the county.

Preliminary study results showed that 60% of the adult ticks collected in Greenwich, Bethel, Easton, Newtown and Redding were infected with Lyme disease. The results are part of a 14-town study conducted by the alliance in efforts to find the prevalence of Lyme disease in trafficked areas like playgrounds and parks.

The science that connects deer to Lyme disease involves the deer tick’s need for adult deer to reproduce. While smaller animals like rabbits, chipmunks and mice carry the spirochete bacteria that causes Lyme disease, the adult deer tick can’t reproduce without feeding off deer. Deer can carry about 100 ticks at a time on their ears.

Dr. Scholl said throughout the different phases of a deer tick’s life, it will feed on different animals. Tick larvae are small and mostly feed off mice and chipmunks where they pick up Lyme disease. While larger ticks will still feed on the smaller animals, research is still being conducted on what part of deer blood allows the tick to reproduce.

According to the Department of Environmental Protection, about 29,000 human cases of Lyme disease were reported in Connecticut from 1996 through 2007.

Dr. Daniel Cameron, president of the International Lyme and Associated Diseases Society, said he continues to see more new and chronic cases.

“It continues to be a constant problem for towns in Fairfield and Westchester counties,” said Dr. Cameron who has a private practice in Mount Kisco, N.Y., and sees many patients from the area.

Where are all the deer coming from?

Unlike other wildlife populations that are adversely affected by human encroachment into their habitats, deer thrive on the continuous development throughout the county.

Dr. Scholl said the deeper you go into mature woodlands there are dark areas with less vegetation for the deer to feed. Increasing development has created more edges to forests where deer can thrive on natural vegetation as well as plants from landscaped lawns.

Development has also limited the space where people may hunt. Fewer hunters and better areas for deer to find food is a combination that leads to deer populations growing very quickly, Dr. Scholl said.

Aside from development, warmer winters have allowed a larger population of deer to thrive because more food is available to them and allow the deer tick to live throughout the winter.

The unbalance in deer population isn’t good for humans or deer, say experts. However, Dr. Scholl said deer population control is a political issue and should be handled statewide before towns can adopt plans.

She added that three communities in the Northeast serve as examples of how decreasing the deer population can lessen Lyme disease outbreaks. One example is Mumford Cove in Groton where 30 cases of Lyme disease were reported per year when the deer population was about 110 deer per square mile.

By using a program organized by the Connecticut Department of Environmental Protection, the community now reports about two cases of the disease per year and has controlled the deer population to about 11 deer per square mile.

The program uses volunteer “hunters.” They’re not really hunters because they aren’t looking for deer in the traditional sense, Dr. Scholl said. To make the hunting safe in residential areas, the hunters sit in tree stands at designated locations and wait for deer to come directly underneath the tree baited with corn bait.

Two volunteers are used a year to keep deer levels the same.

Ms. Manolis said towns need to take action in controlling deer populations and suggested that a day and time be set aside for hunters to be able to hunt deer throughout town. Setting a day and time would keep non-hunters away, she said.

Ms. Manolis added that the venison from the hunting days could be donated to food pantries or shelters for people who need food creating a full circle service that many people can benefit from.

While some experts feel that hunting is the best option for deer population control, other control methods exist and are being used. Fire Island, N.Y., has a birth control program in place to reduce the number of deer at Robert Moses Beach.

Many people use fences around the perimeter of their homes to keep deer off their lawns to prevent damage to their landscaping and the spread of ticks in their yards. Others use tick sprays on their lawns specifically for deer ticks or ultrasound hardly audible by humans but very uncomfortable for deer.

Pleasantville, N.Y.-based DeerTech offers a system that encompasses all three alternative solutions to protect lawns and landscaping from damage caused by deer.

Greenwich resident Greg Lake, president of DeerTech, said the system attacks deer on multiple senses.

He added most people install the system as an insurance policy to protect their landscaping and not as much to protect them from ticks and Lyme disease.

“There is no sure-fire or single bullet,” said Mr. Lake about the various methods to deter deer, adding that the DeerTech system works best because it’s multi-faceted.

About Sue Vogan

Sue Vogan was a military wife for many years. During 1997, she was bitten by a tick and developed Lyme disease. Since then, her life has not been the same. She might have been dumped onto the path of chronic illness, but she has made the best of her journey. She has met some pretty incredible people and learned more about life than she ever knew existed. 

Sue is a published author – NCO: No Compassion Observed and her new series, The Experts of Lyme Disease: A Radio Journalist Visits the Front Lines of the Lyme Wars, is due out in August – to preorder go to http://www.lymebook.com/experts-of-lyme-disease-vogan. But books weren’t enough and that’s how In Short Order came to be in 2005. And to just add a little more spice to the world of chronic disease, Sue will be starting a new magazine, Peer Observations, that will be written by the experts and be available in December 2008 by subscription (part of the profits go to medical research and education). 

Log in from 9PM Eastern Standard time for an hour or download the program at http://www.contacttalkradio.com/hosts/suevogan.htm

The National Capital Lyme Disease Association, with Founding Sponsor Turn the Corner Foundation, was pleased  to host the Congressional Luncheon Briefing on Lyme Disease on Wednesday, September 24, 2008. 

We want to offer our heartfelt gratitude to all of you for your support, in whatever form – emotional, financial or active participation through letters, congressional visits and phone calls – over these weeks leading to the luncheon briefing on Capitol Hill.  Thanks also, to Turn the Corner Foundation for making this possible with its generous support. 

The goal of the briefing was to provide education and increased awareness in Congress of the growing Lyme epidemic and to suggest the need to establish a new Congressional record.  Congressional hearings would provide a firm and informed basis for decisive federal action on behalf of all tick-borne disease patients.  Wednesday’s program conveyed the need for comprehensive research reflecting the entire spectrum of the medical community and for careful government oversight of the research process until these infections are conquered.  

By all accounts and measures, it was a success!  We had over 100 in attendance.  We had it filmed and hope to have the program on our website by the end of next week.  It was also covered by our local ABC television station.  If you want to see it click on this link: http://www.wjla.com/news/stories/0908/556184.html 

Keep  in mind that our goal was to convince Congress of the depth of human suffering and loss of productivity caused by Lyme disease.  We wanted Congress to know that the controversy surrounding diagnosis, treatment and the existence of chronic Lyme has created a gridlock that requires their attention and action with an in-depth Congressional hearing and continued oversight. 

Andy’s film was beautifully edited to present the most important points.  Viewers were left with  a clear picture of the opposing camps’ thoughts and behaviors.  Most poignantly, however, it conveyed the suffering of patients left wounded on the battlefield.  The audience was extremely attentive! 

Pam Weintraub delivered that missing middle piece – the independent, uncontaminated science – and with passion and eloquence, challenged Congress to investigate fully, but not to allow it’s investigation to degrade into a "he said/she said" between the opposite extremes that would go nowhere.  She encouraged Congress to give hearing to the vast uncommitted central ground of scientists who are studying tick-borne diseases, where real strides are being made to unravel the mystery of these pathogens. 

Pam and Andy both have given us so much more than a book and a film — they continue to sacrifice their time, and invest their careers, to advocate for us.  Our gratitude for that is immense! Dr. Samuel Shor, who is highly regarded among his colleagues as well as the community (Washingtonian’s Top Doctor List), spoke about his transition of discovery from IDSA treatment to that of ILADS.  He gave examples of misdiagnosed case studies where he came to understand that many patients diagnosed with other diseases were, in reality, suffering from Lyme.  He shared his experience with the effectiveness of the ILADS treatment approach. 

Dr. Robert Mozayeni, who has both Yale and NIH on his resume, briefly discussed co-infections and the dilemma of trying to diagnose Lyme in the typical short examination time allotted to each patient.  He emphasized the need to listen and remain open-minded to the nuanced and ever-changing world of science. 

We were told not to be surprised that Hill people would come, eat and run.  In fact, very few left, even though it lasted longer than the allotted hour and a half.  Many took notes.   

But what we want you to understand today is the critical role YOU played in this project!  Those phone calls you make to your legislator – you think they don’t matter?  Take note:  When we were delivering information to the offices, one of our volunteers walked into the office of a South Carolina legislator and upon announcing who she was and why she was there, she was greeted with "Oh, I was just on the phone with one of our constituents, and she was telling me about her struggles with Lyme.  Count me in.  I’ll be at your briefing!" 

During our visits to the congressional offices, we encountered many staffers who were personally affected by Lyme.  We believe that these experiences are going to lead some to read the book and view the DVD, then hopefully they will be shared with others.  Pam’s book is now on their book shelves and will be more likely used as a resource when questions arise. 

The clincher on this is the LETTERS you wrote.  They were transcribed on stationery and all were placed in envelopes addressed to your  legislators.  Some were delivered Wednesday and the remaining will be delivered next week.  Every single Senator and Congressman   is receiving a book and a DVD due to your generosity. We know that many of you made a real sacrifice to do this.  Without your participation we would not have reached our goal. 

To show the power of the DVD and the book, we’d like you to know about the commitment of Congressman Frank Wolf of Virginia.  He was so moved by Pam’s book, donated by one of his own Virginia constituents, that he came to the NatCapLyme briefing.  At the briefing, he was so moved by Andy’s film, that he then made a statement on the floor of the House of Representatives about the crisis of Lyme disease.  He sought a commitment for full hearings from Congressman Frank Pallone, the chair of the House Health subcommittee early in the next Congress. This is but one example of the kind of impact educating your Senators and Representatives can have.

Text courtesy of The National Capital Lyme Disease Association 

What began as the routine business of Congressman Frank Pallone (NJ), House Energy & Commerce Health Subcommittee Chair−bringing his Committee health bills directly to the House floor for action−ended as a three Congressman debate on the plight of Lyme patients, chronic Lyme disease, and the failure of Mr. Pallone’s health sub committee to bring up the Lyme bill, HR 741 (Smith NJ).  

Congressman Frank Wolf (VA), HR 741 co-sponsor, called Mr. Pallone on the carpet for burying Smith’s vital bill, which addresses the exploding Lyme disease epidemic sweeping the nation. In an impassioned plea, Wolf repeatedly called for Congressman Smith’s bill to be brought up for action. He spoke of the increase in cases in his own state of Virginia and pointed out that Mr. Pallone comes from a high incidence area himself, New Jersey.  Mr. Pallone responded that Lyme disease is a serious issue that requires a lot of study, since some doctors and his neighbors who are doctors have said antibiotic treatment can be dangerous, even cause death.  

Congressman Frank Pallone indicated to the Lyme Disease Association (LDA) that he would bring up the bill before his committee in 2008.  After the IDSA lobbied congressmen in DC, Pallone refused to post the bill for any action in committee, saying we have to wait for the IDSA to reconsider its Lyme disease treatment guidelines under the settlement with the Connecticut Attorney General, effectively putting the disposition of the bill in the hands of the IDSA.   

Since that time, volunteer patient advocates have worked together and continued to educate Mr. Pallone and Congress about the science supporting chronic Lyme.  In April, the LDA held two congressional briefings in DC, and in September, LDA and National Capital each held a briefing in DC.  

Congressman Wolf entered into the Record the effects of Lyme disease on his district and the nation, describing in detail various complications associated with Lyme and the consequences of not being adequately treated.  He reported Lyme case numbers have risen dramatically in his state, and he knows his constituents are suffering due to Mr. Pallone’s actions. 

Congressman Christopher Smith then rose and laid out the rationale for action – vast underreporting of case numbers, misdiagnosis, inability of patients to get treatment and insurance reimbursement.  Mr. Smith then stated that his bill does not address treatment, but will provide a federal  advisory committee and  funds for much needed research to determine the status of chronic Lyme disease, that there is a companion bill in the Senate, and the House version has over 112 co-sponsors.

Mr. Smith said he personally knew many Lyme patients who were seriously debilitated due to chronic Lyme, and he described how patients were unable to be treated due to the treatment guidelines for Lyme disease published by the Infectious Diseases Society of America (IDSA) −a Society which has been investigated by the Attorney General of Connecticut for conflicts of interest in the guidelines’ development. Mr. Smith read into the record excerpts from the AG’s action and settlement where the AG mentioned the conflicts and also the lack of all the science of Lyme disease being presented.  Mr. Smith also indicated that he believed a cover up of chronic Lyme exists. 

Mr. Pallone called both Congressman Smith and Attorney General Blumenthal, “grandstanders,” and implied the AG was interfering rather than helping this situation.   

Wolf & Smith demanded a hearing or some action on the bill; Smith cited a letter from the House Lyme Caucus of which he is co-chair, to Mr. Pallone.  Although the Congressional session is ending, a lame duck follow-up is still a possibility.   

From the early days of educating representatives through massive letter writing campaigns, phone calls, petitions and countless personal visits to Washington DC offices, to the many rallies, protests, scientific presentations, formal gatherings and Congressional briefings, we are now seeing that the goals we set years ago are within our reach.  We have reason to celebrate.   We will provide updates as they become available – please stay tuned and be ready to take action if needed.

Text courtesy of Pat Smith, President, Lyme Disease Association