SHARE THIS PAGE:
President of the Lyme Disease Association, Inc. graduated from Monmouth University. She has been involved with Lyme disease issues for 35 + years and is a Member of the HHS Lyme & Tick-Borne Disease Working Group, Member of the Columbia Lyme & Tick-Borne Diseases Research Center Advisory Committee, the Congressionally Directed Medical Research Programmatic Panel on Tick-Borne Diseases, and the Environmental Protection Agency Pesticide Environmental Stewardship Program. She has twice testified before US House Subcommittees on Lyme and is former Chair of the NJ Governor’s Lyme Disease Advisory Council. She has published on and been interviewed for broadcast, electronic and print media on Lyme and tick-borne diseases. (full bio)
There are many versions of what happened out there on the net about the meeting held March 7 and 8 at the CDC Atlanta. Here is a detailed version from my perspective of that meeting including the Centers for Disease Control & Prevention’s (CDC) actual role in the meeting.
We miss you, TC
Over the decades, I have been fortunate to work with some of the finest people I have ever known. These are the people who have been fighting against influential individuals preventing the diagnosis and treatment of thousands of Lyme patients—instead of working for those who have helped provide or enable treatment.
After 39 years as a Lyme educator and advocate, I’ve become immune to the fact that the status quo with Lyme rarely alters, and if it does, it does not often make a dent in the lives of patients. I had hoped that the new webpage placed on the CDC website the last week of October 2023, would change that.
EXPECTATIONS: The recent Bloomberg article on the upcoming Lyme disease vaccine was not a surprise but was certainly a disappointment to the Lyme community and the Lyme Disease Association Inc. (LDA). The reporter spent time tracking me down to do an interview, as she indicated to me, many in the Lyme Community had suggested to her that I should be interviewed, probably due to the LDA’s involvement in the Lyme scene during the prior vaccine withdrawal.
LDA INVOLVEMENT IN EARLY VACCINE: At the time the first Lyme OspA vaccine, LymeRix®, was receiving FDA approval, with the most provisos− according to the chairperson−the LDA was already more than a decade into educating about and providing research funds for Lyme disease. As LDA president, I was educating in NJ and elsewhere. The prevailing questions and comments were always the same: talk and questions about the vaccine− problems that many people said they/acquaintances were experiencing and attributing to the vaccine.
Today I took time out of my schedule to watch a movie, one I’d heard about but not seen, one that deals with an issue I have advocated and educated for over 39 years. After 4 decades, people ask me why do I continue to volunteer for the Lyme disease cause. This movie lays it out; my life flashed before my eyes, emotions tore at my heart─ anger and sadness─ and brought me to tears. Quiet Epidemic is a journey through the often times sordid history of Lyme to the present through the words and deeds of some of the most competent and giving scientists and doctors in the Lyme movement, including doctors Brian Fallon, Rich Horowitz, Ken Liegner, and others too numerous to mention.
When the Lyme Disease Association Inc. (LDA) was contacted by a student at Duke Law who wanted to organize a group of students in a Lyme disease pro bono project, I was very excited about the possibilities…Lyme is not just a disease but a political nightmare… this was an opportunity to have some of the brightest and most motivated of our youth tackle this epidemic….The findings from this group of law students can be disseminated and used to empower patients, families, physicians, politicians, and researchers to unravel the secrets surrounding Lyme and provide solutions for Lyme and other tick-borne diseases across the globe.
From LDA President Pat Smith’s Blog: Sometimes we are blessed to have great men walk the earth-men and women who devote their lives to helping others without thought for themselves. Such a man was Dr. Charles Ray Jones, healer. He was honest, kind, courageous and had integrity, compassion, and humility. His devotion to helping our children all over the country is unparalleled. I knew him for decades yet never heard a complaint from him despite the many trials he faced in his life just trying to save the lives of our children.
From LDA President Pat Smith’s Blog: One of the greatest champions for Lyme and tick-borne disease patients is gone. A man of great talents and sterling character—a man with a presence. Dr. Nick Harris, founder of IGeneX Labs and an early developer of Lyme tests which undoubtedly saved the lives of hundreds of thousands of patients across the world with Lyme & tick-borne diseases. He not only gave patients hope but gave them tangible solutions for their diagnostic dilemmas.
From LDA President Pat Smith’s Blog: The Subcommittee on Africa, Global Health, & Human Rights held a hearing 2pm, on Tuesday, July 17, 2012 in 2172 Rayburn HOB in Washington, DC, Global Challenges in Diagnosing and Managing Lyme Disease – Closing Knowledge Gaps. US Rep. Christopher H. Smith (NJ) chaired the hearing. The hearing was webcast and available live via the Committee website.
From LDA President Pat Smith’s Blog: HISTORY-Forty-six years after a mother alerted public health about an unknown disease affecting her Connecticut neighborhood, patients still await answers about Lyme disease and help from the federal government− little has been forthcoming. It’s been 37 years since I first saw Lyme as a board of education member and 29 years since I first contacted…
LDA Doctor Referral System © Terms & Conditions and Guidelines
Save this Information for Your Records:
About LDA DOCTOR REFERRAL SYSTEM ©
Welcome to the Lyme Disease Association’s LDA Doctor Referral System ©. LDA made updates and enhancements to its prior system and has launched a new site to provide patients with information about doctors, other practitioners, testing labs, and pharmacies that are knowledgeable about chronic Lyme disease and often about many other tick-borne diseases (TBD). Many of the doctors listed are often referred to as Lyme Literate Physicians/Doctors (LLMD). Tens of thousands of patients have successfully used the prior LDA system to locate Lyme and TBD resources.
Terms & Conditions and Guidelines
Because there is a negative political climate surrounding Lyme disease, many LLMDs do not want their names posted outright on the internet. LDA has tried to balance the doctors’ wishes with patients’ need to find a doctor. This new system is a result of that compromise and therefore:
Because of the limited number of physicians treating chronic Lyme disease nationwide, some states, and in some instances, entire regions, may not have any treating physicians who follow flexible treating approaches such as those in the International Lyme & Associated Diseases Society (ILADS) Guidelines, Evidence Assessments and Guideline Recommendations in Lyme Disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease. In the event that the LDA Doctor Referral System © contains no Lyme or TBD resource listings in a given area, the closest possible option(s) will populate based on the location entered and specaialty/ies selected. The LDA appreciates any changes in provider information that you may find and make us aware of so we can investigate.