Dr. Harriet Kotsoris interview with Dr. Ronald Hoffman discussing Lyme disease and LRA's role in funding research. Listen.
About Lyme Research Alliance
6 minute video
April 5th, 2014
Hyatt Regency, Greenwich, CT
Details to be posted shortly.
Lyme Research Alliance, Inc.
(formerly Time For Lyme, Inc.)
DONATE APPRECIATED STOCK THIS YEAR FOR A DOUBLE TAX PLAY
With the stock market in record high territory this year, NOW is a particularly beneficial time to consider a gift of appreciated stock to the non-profit organizations you support – which of course we hope includes Lyme Research Alliance. Because your tax deduction for stock owned longer than 12 months and donated to a 501(c)(3) non-profit organization is valued at the fair market price on the day the stock is donated, the deduction can in some cases be worth more in after-tax dollars than the original cost of the stock…and you also save capital gains taxes on the appreciated stock. Since no taxes are payable by LRA upon selling the stock, this creates a win-win opportunity for our donors.
MEET LYME RESEARCH ALLIANCE'S PERSON OF THE MONTH:
REBECCA JACKSON Miss America Contestant Says Lyme Disease "the Worst Experience of My Life"
Miss Delaware, Rebecca Jackson, says Lyme disease left her unable to walk, read and in debilitating pain for several months. Named by the Lyme Research Alliance as its Person of the Month, Jackson says she hopes to increase awareness of the illness and urges Lyme sufferers to “never give up hope.”
Some good news for the Lyme community is that Lyme disease is receiving an unprecedented level of coverage in the media, with a particular focus on chronic cases where diagnosis and treatment failed the patient. Here are some of the current stories:
October 1, The Huffington Post: Lyme Around The World Series:
Each week in the Huffington Post, blogger Cathy Rubin examines the current state of Lyme and other tick-borne diseases around the globe. She has interviewed leading researchers and government officials in the U.S., Japan, Australia, France, Germany, Norway and other countries. Read more.
August 18, Boston Globe: When the Cure Doesn't End Pain: Third article in a series by staff writer Beth Daley: some Lyme disease patients have symptoms that can linger for years despite standard treatment. Scientists are puzzling over how that can be. Read more.
July 12, NY Times: Tick Checks, Bug Spray and Antibiotics: Summer in the Age of Lyme, by Hope Reeves. The worst summer for Lyme on Block Island. Read more.
July 12, CNN: Why You Should be Afraid of Lyme Disease: A compelling documentation of chronic Lyme and the serious problems that still surround its diagnois and treatment from an authoritative source, Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Epidemic", winner of the 2009 American Medical Writers Association book award. Pamela is also executive editor of Discover magazine. Read more.
July 8, NY Times: “When Lyme Disease Lasts and Lasts”, from personal health columnist Jane Brody showcasing several case stories that will sound familiar to those families living with Lyme. We enjoyed the quote from LRA-funded researcher John Aucott referring to long-term Lyme sufferers who are labelled by some as hypochondriacs or sluggards: “These are high-functioning people — couch potatoes don’t get Lyme disease.” Read more.
LRA AWARDS SIX NEW RESEARCH GRANTS
The LRA Board has announced six new grants worth almost $500,000 to researchers pursuing novel and promising directions in Lyme disease research.
The six researchers were selected following a rigorous process using guidelines established by the National Institutes of Health (NIH). Each proposal was evaluated by Grant Review Committee members of LRA’s Scientific Advisory Board and met the same scientific standards that the NIH applies to its own research grant review process. The resulting 2013-2014 grant awards represent projects judged to have exceptional prospects of delivering measurable advances.
LRA’s scientific agenda encompasses two areas critical to all those affected by Lyme disease: the discovery of a reliable, effective and accessible diagnostic test; and the development of effective treatments for long-term or “chronic” Lyme disease. Five of the six grants released this week reflect LRA’s two-fold scientific agenda:
This word of encouragement from Dr. Brian Fallon, Director of the Columbia University Lyme and Tick-Borne Disease Research Center kicked off the second annual Race Against Lyme 5k Walk/Run on April 28. A day of picture-perfect weather brought out nearly 300 runners, walkers and friends to Cove Island Park on a Sunday morning for LRA’s second annual “Race Against Lyme,” raising $27,000. The event--which drew participants from several other states including Rhode Island, New York, and Massachusetts--was timed to help kick off Connecticut’s Lyme Disease Awareness Month.
A newly published study that is a good reminder for the Lyme community and critical information for every clinician, documents incidence of the EM rash presenting an atypical appearance beyond the classic bull’s-eye. The paper notes: “The best diagnostic sign in patients with early Lyme disease is a skin lesion, erythema migrans (EM). However this sign may not occur or be recognized in 30% of cases. Furthermore, the EM rash may not display a classic bull’s-eye (ring-within-a-ring) appearance, a fact that may be underappreciated by many physicians. In summary, clinicians should consider Lyme disease in the differential diagnosis of patients who have a rash that may not be classic EM and who have been in areas where Lyme disease occurs.”
Yolanda Foster, one of the “Real Housewives of Beverly Hills,” brought herself to tears Saturday night during a moving and powerful speech at Lyme Research Alliance’s “Time for Lyme” Gala, as she eloquently recounted how Lyme disease led her to “some of the darkest days of my life.”
REAL HOUSEWIVES OF BEVERLY HILLS” YOLANDA FOSTER SAYS LYME DISEASE LED TO “SOME OF THE DARKEST DAYS OF MY LIFE”
Foster told the audience at the Hyatt Regency Greenwich, where she received LRA’s Star Light Award, that Lyme disease had so severely affected her before she was finally diagnosed and treated, that she went from being “the tough cookie that I am” to “a shell of the woman I used to be.”
At the annual meeting of the American Society and Tropical Medicine and Hygiene, Yale University researchers recently presented work on babesiosis, a malaria-like disease spread by a parasite that attacks red blood cells. The deer tick, which also spreads Lyme disease, is the most common vector for the babesiosis parasite, Babesia microti.
Connecticut and the Hudson Valley are ground-zero for the emerging babesiosis threat; and now the alarming finding is that when Lyme and babesisosis are co-transmitted through a tick bite, the resulting babesiosis infection is more severe.
"….Lyme disease is somehow intensifying transmission of babesiosis," Yale researcher Peter Krause said.
Exciting progress announced this quarter by two Lyme Research Alliance grantees confirms that significant strides are being made in the science of understanding and combating Lyme disease, once again underscoring the critical role played by privately-funded research in this field which continues to receive relatively low levels of Federal funding.
STUDY REPORTS FLAWS IN DESIGN, ANALYSIS, AND INTERPRETATION OF LYME DISEASE Statistical analysis questions evidence discouraging retreatment.
Most doctors treat Lyme disease with antibiotics for two to four weeks after diagnosis, but if symptoms persist after that, medical guidelines recommend against antibiotic retreatment. That recommendation may not be warranted.
An interdisciplinary research team has found that squirrels in the St. Louis, Missouri area, especially the Eastern gray squirrel, may play a larger role in transmitting pathogens to ticks than previously recognized. Researchers at Washington University in St. Louis and the University of Illinois Urbana-Champaign, using a sophisticated DNA assay, found the Eastern gray squirrel is “an important bloodmeal source in nymphs harboring Erhlichia and Borrelia species.” The research is published in the May 2012 issue of the Journal of Medical Entomology.
NEWLY PUBLISHED STUDY DOCUMENTS PERSISTENCE OF BORRELIA FOLLOWING LONG-TERM ANTIBIOTIC TREATMENT IN MONKEYS
A study published in early 2012 documents the resistance of the Borellia burgdorferi (Bb) bacterium to aggressive long-term antibiotic treatment in non-human primates. This study represents another source of evidence that the Bb bacterium can evade the intended effects of long-term antibiotic therapy. Macaque monkeys were infected with Bbborrelia and received aggressive antibiotic treatments 4-6 months later. Multiple methods were used to measure the presence of Bb (see study); although the level of Bb antibodies declined, intact Bb was found to be present at a low levels in the serum of the treated monkeys following aggressive antibiotic therapy. This connects to research studies currently in progress with funding help from LRA: Dr. Eva Sapi’s work on understanding biofilms, and Dr. Ying Zhang’s work on L-forms of the Bb bacterium, both of which are believed to be strategies used by the bacterium to evade the effects of antibiotic treatments. It is encouraging to see the work of different research teams converging on an understanding that not only is Bb capable of evading antibiotic therapy, but developing an understanding of the mechanisms adopted by the bacterium to dodge the antibiotic “bullet”.
For a documentation of the formidable consequences of long term Lyme disease see Dr. Phil’s recent show on chronic Lyme disease: http://bit.ly/HMQDcT
LYME DISEASE - IT'S ABOUT 5,000 YEARS OLD
The article usually reads like this: “Lyme disease was first identified in the town of Lyme, CT in the 1970s…” but now the facts have changed dramatically. The recently discovered “Ice Man” whose frozen body was discovered by a climber in the Italian Alps, died 5,000 years ago and now we know that he was suffering from Lyme disease. "Our data point to the earliest documented case of a B. burgdorferi infection in mankind. To our knowledge, no other case report about borreliosis [Lyme disease] is available for ancient or historic specimens," the investigator writes in an article published on Tuesday (Feb. 28) in the journal Nature Communications.
This summary article quotes Dr. Stephen Schutzer, of the University of Dentistry and Medicine of New Jersey whose research into the nature of Lyme disease is funded in part by grants from Lyme Research Alliance of Stamford.
Lyme Research Alliance, Inc.
2001 West Main Street, Suite 280
Stamford, CT 06902
Tel: (203) 969 1333
The material on this web site is provided for information purposes only. This material (a) is not nor should it be considered, or used as a substitute for, medical advice, diagnosis, or treatment; nor (b) does it necessarily represent endorsement by or an official position of Lyme Research Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.