One Success Hurts Thousands Who Are Suffering

Bay Area Lyme Foundation Responds to NY Times Story

We are thrilled for the Mandavilli family, who shared that their son responded well to treatment for Lyme disease in The New York Times story My Son Got Lyme Disease. He’s Totally Fine. This is not the case for everyone, and it is irresponsible, and scientifically inaccurate, to blanketly define Lyme, and other tick-borne diseases, as “easily treated”. This one patient’s experience can be countered by hundreds of other patients whose disease has brought their lives to a halt. It does a huge disservice to patients whose families read stories like this and question the patient’s symptoms, and whose community doctors see reports like this and refuse much-needed treatment. The joy of the Mandavilli family should be heralded as a success but not an example.

The CDC has reported deaths due to Lyme disease beginning as early as 2013, with most caused by Lyme carditis, a condition in which the bacteria invades the heart. And, the ability of this bacteria to invade other organs, including the brain, and cause paralysis is well-documented. Several celebrities including Alec Baldwin, Avril Lavigne, Yolanda Hadid and Kelly Osborne have by their own accounts believed that they were near death due to Lyme disease. Clearly, the singular experience of the Mandavilli family is not broadly representative of what every person with Lyme experiences.

Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections

Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.

“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group.  “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”

While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.

New Study Finds Lyme Bacteria Survive a 28-day Course of Antibiotics When Treated Four Months After Infection by Tick Bite

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

New Study Finds Lyme Bacteria Survive a 28-day Course of Antibiotics When Treated Four Months After Infection by Tick Bite

All subjects treated with antibiotics were found to have some level of infection 7–12 months post treatment.Despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder. Lyme bacteria which persist are still viable.

Portola Valley, California, Dec. 13, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of two papers published in the peer-reviewed journals PLOS ONE and American Journal of Pathology, that seem to support claims of lingering symptoms reported by many patients who have already received antibiotic treatment for the disease.

Straight Talk about Biofilms: A New Answer for Treating Lyme Disease?

Biofilms that form in the human body are up to ten thousand times more resistant to antibiotics than free-floating bacteria, making them very difficult to treat medically. These biofilms are responsible for the extreme persistence of many difficult to treat illnesses like Legionnaire’s disease, Staphylococcus aureus (“Staph”), and infectious bronchitis, that can trouble patients with frustrating symptoms for years.

Some years ago researchers showed that biofilms might also be helping the Lyme-causing bacteria evade treatment.(1) These findings have excited Lyme researchers who have since been exploring various treatment strategies designed to target the entire bacterial colony. If successful, these treatments might bring long-needed relief to patients with late-stage or persistent Lyme disease where antibiotics have previously failed.

At Bay Area Lyme Foundation, we are also inspired by these discoveries and hopeful about the treatment options they may bring. Recently we invited Daina Zeng, a Senior Scientist at Agile Sciences, to talk about the work her team is doing adapting Agile’s proprietary non-toxic organic compounds to disperse these bacterial colonies (technology they have leveraged for medical, agricultural, and industrial uses). Her post follows.