Historic Lyme News on Lyme Light Radio

Lyme history was made on September 9, 2014 when the US House of Representatives passed HR9701 – The Tick-Borne Disease Research Transparency and Accountability Act of 2014, a bill authored by Congressman Chris Gibson (NY•19).

You can read Congressman Gibson’s statement here: http://gibson.house.gov/news/documentsingle.aspx?DocumentID=392929&utm_content=buffer67c89&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

This Is a major step forward, acknowledging the necessity of taking Lyme disease seriously and the fact that research is important. David Roth, Co-Chairman of the Board of the Tick-Borne Disease Alliance (TBDA) will join us on air this Wednesday, September 17 to discuss the ramifications of this important political step.

You can tune this Wednesday, September 17 at 4PM Eastern Time at http://www.transformationtalkradlo.com or on WBLQAM 1230 in Southern New England.

Katlna Makris, CCH, CIH

LymeLightRadlo.com

John Donnally of the TBDA Returns to Lyme Light Radio

Children and teenagers spend more hours outdoors and in the woods, on average, than most adults. All this time spent in nature leaves younger people vulnerable to tick-borne illnesses and Lyme disease, the fastest-growing infectious disease in the United States.

Listeners remember when we followed John Donnally of the TBDA on his 3,000-mile bike trip across America to raise awareness of the Lyme epidemic. This week, John returns to the show to tell us about TBDA’s new Junior program, which will help support young folks struggling with tick-borne illness. John will educate us on how we can help children and teens struggling with these chronic illnesses.

John returns to the show this Wednesday, July 23, at 4PM ET, followed by an encore episode from his bike trip last fall. You can listen on WBLQ in Rhode Island and at http://www.TransformationTalkRadio.com. You can find the interview on iTunes or listen now at http://thedrpatshow.com/shows/mak-140723-donnally.mp3

Katina I. Makris, CCH, CIH

LymeLightRadio.com


JohnDonnallyBorn and raised in Madison, N.J., John Donnally attended the Morristown-Beard School from 2004-2008 where he competed in hockey, soccer and lacrosse. John first began suffering from Lyme-related symptoms in the fifth grade but did not gain an official diagnosis until 2003.
Throughout high school John was healthy and only experienced mild lingering symptoms. As captain of his lacrosse team, John was named first team all-conference and first team all-county. He continued his talents at Colgate University, but during this time, he also began to experience new and intensified symptoms, including cascading floaters in vision, neck pain, joint pain and tendonitis. In 2011, John tested positive for Lyme once again and started treatment immediately.
In May 2012, John graduated from Colgate University with a degree in English Literature and began working as a sales consultant in New York City. While working, John felt a strong desire to take action against Lyme and do something that played a lasting role in his life. This desire inspired him to join the Tick-Borne Disease Alliance and launch Bite Back for a Cure, a national grassroots campaign to build support for the fight against the devastating impact of tick-borne diseases. This summer and fall, John is biking across the country to Bite Back against tick-borne diseases and build support in the fight against the devastating illnesses.

TBDA Annual Lyme Disease Fundraising Masquerade Ball, NYC, May 1

It is with much fanfare and true allegiance I announce to all, the annual Lyme Disease fundraising event hosted by Tick Borne Disease Alliance. Please open the link here to the evite: TBDA EVITE

TBDA is a forward thinking, committed foundation aimed at tackling the serious issues Lyme disease creates in the lives of all too many. Lyme Light Radio featured cyclist John Donnally each week all autumn as he biked across America for Lyme disease awareness. What a pleasure it was to share the journey with remarkable John and my friends at TBDA. Please read this wonderful and insightful letter below from TBDA executive director, Jodi Nass. She is a talent and true gem!!

Come join us for a sparkling night of care, compassion and beauty. I will broadcast “Lyme Light Radio with Katina” from the cocktail reception!!!! Good things are happening for Lyme disease and TBDA’s Masked Gala will be sensational!

Katina I. Makris, CCH, CIH

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PLEASE SAVE THE DATE MAY 1, 2014 

TBDA Annual Lyme Disease Fundraising Gala- Masked Ball 

 Executive Director’s Letter

 With the spring and summer seasons right around the corner, now is the perfect time to encourage more conversations about Lyme and other tick-borne diseases with your loved ones, friends and colleagues. What better way to do so than joining the Tick-Borne Disease Alliance on May 1, 2014, at the annual gala at Chelsea Piers in New York City. This year’s theme, entitled “The Great Imitator Masquerade Ball,” looks to shed light on this debilitating disease, which often mimics other diseases with similar symptoms.

Dynamic, inclusive and passionate, TBDA is dedicated to raising awareness, supporting initiatives and promoting advocacy to find a cure for tick-borne diseases, including Lyme. This year’s gala will be the most influential fundraising event of the year, and it is our privilege to introduce some of the country’s most esteemed and admired individuals, who have graciously lent their support to help us unmask this disguised disease.

It is our pleasure to acknowledge International Grand Prix equestrian jump rider and World Cup finalist Judy Garofalo Torres as this year’s Humanitarian Honoree. A Lyme sufferer herself, Judy has shown great strength in her brave fight against Lyme and possesses an unrivaled commitment to raising awareness and funds for both human and animal Lyme sufferers across the country.

This year’s gala will be led by our Mistress of Ceremonies, Heather Thomson, President and Founder of Yummy Tummy and star of “Real Housewives of New York City.” TBDA’s Honorary Chairs include a group of individuals, all of whom have been personally affected by Lyme as well. Former Major League Baseball Player Tom Seaver; 2014 Olympic Freestyle Skier Angeli VanLaanen and Punk & Indie Rock Musician Kathleen Hanna will all be recognized for their determination to speak out about Lyme and efforts to raise awareness towards this debilitating disease.

It is with great honor that we introduce this year’s Courage Awardees; Jennifer Daily, a graduate student at John Hopkins Materials Science and Engineering Department, who successfully published her work on the development of a highly sensitive and selective biosensor to accurately detect tick-related infections and Kelly Downing, who publicly shared her enduring experience with Lyme on the Katie Couric Show this past October, after suffering a sudden paralysis and miraculous recovery from living with undiagnosed Lyme for 15 years. These two women, along with fellow Courage Awardee John Donnally, have shown unmatched strength and drive to rally entire communities together by employing their painful stories in an effort to accelerate research and acknowledgement of Lyme.

It is not without the tremendous support of Award-winning Actor and current start of television series, “The Following,” Kevin Bacon; Cardiovascular surgeon and host of the nationally syndicated “Dr. Oz Show,” Dr. Mehmet Oz; award-winning Actor, Director and Screenwriter, Ben Stiller, and Major League Baseball team the New York Mets, all of whom have contributed their powerful voices to bring further attention to the alarming threat of Lyme and tick-borne diseases.

As many of you may be aware, this past year TBDA has been working hard to raise national awareness to the importance of the growing threat of this disease. John Donnally, Courage Awardee and Lyme disease advocate who continues to fight the challenges of the disease, completed a national two-month, cross country bicycle campaign entitled “Bite Back for a Cure,” where he traversed more than 3,500 miles and cycled through more than 200 towns and cities from San Francisco to New York City, meeting with other Lyme sufferers. A powerful message from John Donnally can be viewed at TBDA.org.

TBDA was also responsible for holding two forums, one at Weill-Cornell Medical Center and the other on Capitol Hill. On Capital Hill, TBDA met with representatives from Senator Kirsten Gillibrand’s (D-NY) office and staffers throughout the country to discuss the growing epidemic and the federal government’s efforts to improve awareness, prevention and diagnostics. Kirsten Gillibrand has joined Senators Richard Blumenthal (D-CT), Jack Reed (R-RI) and Shelton Whitehouse (D- RI) to cosponsor the Lyme and Tick-Borne Disease Prevention, Education and Research Act, which would establish a Tick-Borne Disease Advisory Committee and invest additional federal funds into Lyme disease research and education. Congressman Chris Smith (R-NJ) – who founded and co-chaired the Lyme Disease Caucus in Congress – has sponsored similar legislation in the House. In addition, TBDA is taking great strides towards the future of diagnostic testing by contributing resources towards a bio-repository, which will be the basis for developing a more thorough analytical diagnostic tool.

Helping to kick off May as Lyme Disease Awareness Month, “The Great Imitator Masquerade Ball” will be held Thursday, May 1 at 6:00 p.m. We would be delighted for you to join us for a festive evening of cocktails, silent auction, dinner and awards program, featuring important messages from fellow Lyme advocates and courageous individuals battling this nationwide epidemic.

Thank you for helping us unmask the disguised disease, growing at a ten-fold rate since last year alone, and for supporting the Tick-Borne Disease Alliance’s dedication to raising awareness, supporting research and improved diagnostics and promoting advocacy for Lyme and other tick-borne diseases.

For more information and to purchase tickets, visitwww.TBDAlliance.org, our Facebook page, or 914-579-1000.

We look forward to wonderful evening together. Your generous support will help TBDA make sense of this tremendous public health epidemic and help to come together as a united front to raise awareness and funds for Lyme and other tick-borne diseases.

Sincerely yours,

Jodi Nass
Executive Director
Tick-Borne Disease Alliance

 

US Senate Briefing on Lyme Disease and Tick-borne Illness Reviewed

Please read this guest blog by Nancy Dougherty of Lyme Disease Research Foundation, who attended the US Senate briefing on December 4 regarding the USA’s fastest spreading infectious illness- Lyme Disease. Thank you Nancy Dougherty for such thorough reporting.

I attended a Senate briefing in Washington DC last week sponsored by the Tick-Borne Disease Alliance (TBDA) to address the national health crisis of Lyme and tick-borne diseases.  The briefing was aimed at advancing Senate Bill S.719, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act. Lyme disease is a major public health problem and testimonies from prominent physicians, advocates and chronic sufferers were compelling.  Senate staffers heard loud and clear that current diagnostics are unreliable, hundreds of thousands of patients are suffering, global warming is accelerating the worldwide epidemic, and more research funding is vitally needed.

Washington is starting to recognize the magnitude of human suffering and economic burden [$3B+ in US] created by Lyme and tick-borne diseases.  Staffers from Rep. Chris Gibson, (R-NY), Senator Kirstin Gillibrand (D- NY) and Senator Bob Casey’s (D- PA) offices told me fighting Lyme disease is a priority and they will work to improve education for awareness & prevention and funding for research to improve diagnostics & treatments. However, the Lyme disease community needs to unite toward these common goals.  Senator Gillibrand, along with Senators Richard Blumenthal (D-CT), Jack Reed (D-RI), and Sheldon Whitehouse (D-RI) are cosponsoring S.719, which would establish a Tick-Borne Disease Advisory Committee and invest additional federal funds into Lyme disease research and education.  Congressman Chris Smith (R-NJ), founder and co-chair of the Lyme Disease Caucus in Congress, has sponsored similar legislation in the house (HR610 and HR611).

Lyme disease only receives $25 million from NIH compared with $3 billion for HIV/AIDS and $112 million for Hepatitis C, despite Lyme incidence being magnitudes greater at 300,000+ new Lyme cases per year in US as compared to 50,000 new cases of HIV/AIDS and 17,000 new cases of Hep C (sources: NIH and CDC websites).

David Roth, Co-Chairman of TBDA, stated “National Institutes of Health (NIH) found that the impact of Lyme disease on physical health status was at least equal to the disability of patients with congestive heart failure, osteoarthritis and greater than those observed in type 2 diabetes”.  Dr. Patricia DeLaMora, Assistant Professor of Pediatrics, Pediatric Infectious Diseases, Weill Cornell Medical Center, said “Children are disproportionately affected by Lyme disease. We need accurate diagnostics and a well-educated medical community. The current diagnostics for Lyme disease are unreliable in the early stages when recognition and treatment are vital, and cannot accurately distinguish between old and new infections.” John Donnally, a 24 year old Lyme disease survivor and advocate who just completed a 3500 mile cross-country cycling public awareness TBDA campaign “Bite Back for a Cure”, conveyed “the epidemic is pernicious and rampant and a meaningful number of people do not get better”. Additional testimony from patient advocates, Karla and Victoria Lehtonen and Kelly Downing, illuminated their devastating stories of multiple systemic Lyme disease that baffled numerous medical experts due to inadequate diagnostics, resulting in ongoing symptoms including severe neurological impairment.  Karla quoted Dr. John Aucott’s research as indicating a significant percent of patients fail treatment and go onto chronic illness.  Dr. Richard Ostfeld, PhD, disease ecologist and Lyme disease specialist at Cary Institute, said “climate change is broadening the geographic range of ticks and their pathogens and the public health impact is getting worse”. When Heather Thompson (entrepreneur & Bravo Housewife of NYC) posed the question, “Do any of you want Lyme Disease?”, there was an uncomfortable silence.  A universal conclusion was the need for more research for tick control, diagnostics and therapeutics. 

Another important event in Washington last week was the FDA’s approval of Gilead’s Hepatitis C drug, Sovaldi, on Friday.  This novel oral drug is a direct-acting antiviral agent effective across a range of Hep C genotypes, adding an important weapon to the therapeutic armamentarium for anti-HCV therapy.  Why is this important or relevant for Lyme disease?  Because it shows that investment in research can produce significant innovation that will substantially improve patients’ lives!  This is an important shift in the treatment paradigm for Hep C patients since the need for side-effect inducing interferon shots will be reduced or eliminated.  It’s also a model for future Lyme disease therapeutics that could potentially, like Sovaldi, target disease specific mechanisms with improved efficacy and work in a range of genotypes.  Also, it’s important to recognize that innovations for illnesses such as HIV/AIDS, Hep C, Cancer and other illnesses depend upon a collaborative national network of clinical research centers for testing innovative diagnostics and therapeutics.  This is presently non-existent for Lyme disease, so there is much work ahead to improve outcomes for patients with Lyme disease as compared with these other illnesses.

Dr. John Aucott has a nationally recognized leading-edge Lyme disease clinical research program at the Lyme Disease Research Foundation that is generating scientific evidence to enhance the understanding of the pathophysiology of the illness and enable the progression of improved diagnostics and therapies. However, at the briefing, it was acknowledged that programs of this caliber are not sustainable indefinitely without government support.  For more information about the Lyme Disease Research Foundation, please visit www.LymeMD.org/.  Donations to fund this vital research are greatly appreciated and will make a meaningful difference in advancing the Lyme disease field.

Thank you for your interest in keeping abreast of Lyme disease issues. Wishing you good health and an enjoyable holiday season with family and friends.

All the best,

Nancy

Nancy Dougherty

Lyme Disease Research Foundation

 

LymeMD.ND@gmail.com

www.LymeMD.org/

Please follow me on twitter @NancyNDougherty

Healing Genius, Dr. David Jernigan and Lyme Disease Road Warrior John Donnally, Light Up on Lyme Light Radio

Lyme Light Radio hosted Dr. David Jernigan of the Hansa Health Care Center in Wichita, Kansas. A gifted health care practitioner, with invaluable treatment experience and research knowledge on tick-borne diseases, Dr. Jernigan brought us compelling insights into what it really requires to overcome chronic Lyme disease. Please listen to our marvelous interview on the archived podcast HERE and available for free on iTunes.

Is it the ‘bugs’ or out body’s ability to deal with the microbial infestations that cause such overwhelming illness, distress and collapse with Lyme disease? A great discussion between Dr. Jernigan and myself on how a human body deals with infection, the concept of supporting immune function and disrepair and what is susceptibility? This is a FANTASTIC Lyme Light Radio show – please listen!

Did you know that every day the average human body caries around 5 pounds of foreign microbes? A shocking thought and a reality check of our personal ecosystem.

John Donnally gave another interview with me too, from Washington, DC, just out of the US Senate Hearings on Lyme disease! Please listen to this brilliant Lyme warrior, and TBDA missionary’s remarks. 40 senators acutely listened to patients, researchers and lawyer testimonials on the misrepresented Lyme disease epidemic. John said it was a powerful and moving experience to be helping facilitate government action regarding ourBiteBack_Header-crop critical public health care crisis.

Welcome home John Donnally. 3,700 miles, 64 days in the bike saddle! You have made history, cycling across America for Lyme disease awareness on the ‘Bite Back for a Cure’ campaign. The Lyme disease community is forever indebted to you and your passionate commitment.

You are a hero on so many levels – we all love you! Our final wrap up with John and TBDA is on our December 18th show. A full review of this cross country Lyme disease educational campaign. Thank you for you hard work and thank you Dr. Jernigan for helping restore lives and promote a more unified healing paradigm. It is a pleasure to host Lyme Light Radio.

Katina Makris, CCH, CIH

Dr. Kerry Clark to be on Lyme Light Radio 11/21

Lyme Light Radio with Katina welcomes Dr. Kerry Clark, who will be with us this Wednesday, 11/21, 4:00pm ET/1:00pm PT. With 20 years of tick research in the south, Dr. Clark shares stunning revelations that Lyme disease is more rampant in the southern United States than the north! Wake up America, ISDA, CDC and everyone! Join us to learn more about his fascinating and important work!

Dr. Kerry Clark

Dr. Kerry Clark is the Associate Professor of Epidemiology and Environmental Health. Dr. Clark came to the University of North Florida with a Masters in Public Health Epidemiology from the University of Alabama at Birmingham. He earned a Ph.D. in Environmental Health Sciences from the University of South Carolina, where he conducted the first ecologic study of the Lyme disease bacteria in that state. He has been studying Lyme and other tick-borne diseases for the past 20 years. In addition to his research, he teaches graduate and undergraduate courses in epidemiology and environmental health in the Department of Public Health at UNF.

Dr. Clark is committed to studying the ecology and epidemiology of Lyme disease and other tick-borne diseases in the southern U.S. He was the first to report finding Lyme disease spirochetes in animals and ticks in South Carolina, and in wild reptiles in South Carolina and Florida. He has documented the presence of Lyme disease bacteria, Babesia, and other tick-borne pathogens in wild animals, ticks, and humans in Florida and other southern states. Recently, he discovered two previously unrecognized Lyme Borrelia species in human patients in Florida, Georgia, and other states across the U.S.

Lyme Light Radio can be listened to live on WBLQ 1230AM in Southern New England or streamed online at http://www.TheDrPatShow.com and http://www.LymeLightRadio.com. We are also archived on The Dr. Pat Show website and can be found in podcast form for FREE on itunes!

REMINDER! 5th caller will receive an autographed copy of “Out of the Woods,Healing Lyme Disease, Body, Mind & Spirit”. 800 930 2158

Dr. Daniel Cameron and Cyclist John Donnally both on Lyme Light Radio

Lyme Light Radio hosts two fabulous interviews this week. Join us Wednesday November 13, 4pm ET/1pm PT on TheDrPatShow.com and LymeLightRadio.com at the top of the hour.

TBDA cyclist John Donnally on the “Bite Back For a Cure Campaign” updates us on his amazing trek across America. Launched 9/29 from San Francisco, this heroic Lyme disease survivor and advocate has been busy bringing advocacy and awareness nationwide. Now in Ohio, we share John’s journey and gathering grassroots coalition. TBDAlliance.org

ILADS (International Lyme and Associated Disease Society) is the premier educational group in the world, training health care practitioners about tick borne illness. Dr. Daniel Cameron, ILADS President, joins us at 4:30/1:30 for an intimate view inside this instrumental organization and the life altering work they do. It is my true privilege to interview this remarkable physician and devoted Lyme disease educator. ILADS.org

Do not miss this very important show. Please share this with all your friends. We will be archived in podcast at TheDrPatShow.com and also on itunes.

Thank you listeners! “Lyme Light Radio” celebrates it’s 3 month birthday with this show! Wow!

Like last week, I will give an autographed copy of “Out of the Woods: Healing Lyme Disease – Body, Mind & Spirit” to our 5th caller. 800-930-2819 Be that lucky recipient! Join us!

Katina Makris, CCH, CIH
LymeLightRadio.com