Best of Lyme Ninja Radio #86:  Repeat broadcast (Updates are included)

Holly Ahern, Ph.D. Associate Professor of Microbiology at SUNY Adirondack

When Holly Ahern found out that her daughter’s mysterious illness was Lyme disease, she quickly immersed herself in the subject. She soon learned about the controversies swirling around the disease and came to realize that many others were suffering like her daughter. Ahern has become an advocate for developing a broader understanding of Lyme disease – one aimed at treating the chronic symptoms commonly reported by patients who were misdiagnosed or received inadequate treatment in the disease’s early stages.
Her goal is to change the official CDC case definition of Lyme disease, which could attract more attention and funding to Lyme disease.

Topic Times:

6:30 Ahern feels the Lyme/MSIDS issue at hand is due to a perfect storm of events. She feels evidence based medicine which comes from clinical trials is part of the problem and that the experts are about half right – they are leaving out bacteria persistence.

Microbiology is ahead and medicine hasn’t caught up.

9:45 HIV, although caused by a virus, was handled similarly to how Lyme is being handled now.

11:00 Lyme Test is a 2-Tiered test – 1st Tier misses over half of all infections and the 2nd Tier is only 70% accurate.

14:00 Ahern explains the history of bacteria and how antibiotics appeared to be the miracle cure; however, it is now understood that many bacteria cannot be grown in a lab because they have stealthy strategies such as the ability to create biofilms to survive as well as the ability to go into the cell to avoid detection by the immune system. The medical implications have not followed up on these aspects. 5% of infecting cells will shut down and sit inside cells and reactivate later. These persisters keep the infection going.

20:00 Cannot kill all bacteria with antibiotics due to persisters

24:00 Persistence – clear from NIH funded research that borrelia persist. They can probably survive long-term abx. What differentiates people with persisting symptoms and those without symptoms? Probably Immune issues, other infections including viruses, etc.

Borrelia goes to collagen containing tissues and leave the blood quickly. So when a blood sample is taken, few if any borrelia will be caught in that sample. In the lab they have found reactivation of 10 month old sitting borrelia cultures.

** UPDATE on persisters: Horowitz reports that the Dapsone and PZA protocols have been the most effective treatment additions for resistant Lyme and autoimmune symptoms, with PZA being the most effective for dermatological manifestations of Bahcet’s and arthritic/granulomatous changes.

30:00 Why aren’t animals studies taken more seriously? Ahern claims the microbiologists understand this but the medical folks don’t.

**Update:  Dr. Spector, Director of Developmental Therapeutics at Duke Cancer Institute, suffered irreversible heart failure due to undiagnosed LD. He finds it scientifically ignorant that animals studies are nearly ignored when it comes to tick borne disease, and that if they threw out animal studies in cancer, they’d be nowhere.

31:40 Is it as hard to detect coinfections as it is for borrelia? Yes. Ahern claims borrelia is unique to most bacteria with the largest genome known. Veterinarians understand these coinfections but the tests they use are not approved for humans. Also, most coinfections are intracellular and the immune system doesn’t understand what to do with bacteria within our own cells.

** For information on how to treat.  This is for educational purposes only to be used for discussion with your health practitioner.

36:00 Ahern is Vice President of Lyme Action Network, a not-for-profit organization working to advance information and understanding about Tick Borne Diseases. http://www.lymeactionnetwork.org

What is Lyme Disease?  By Lyme Action Network

At the end of the broadcast Ahern highlights some legislation that has been passed:  NY Governor Cuomo signed a bill protecting doctors from investigation by the State Office of Professional Medical Conduct for prescribing antibiotics to treat TBI’s.
21st Century Cures Act was passed and establishes a Tick-Borne Diseases Working Group comprised of federal members and 7 non federal members consisting of physicians and other med providers with experience diagnosing and treating TBI’s, scientists or researchers with expertise, patients and family, and patient advocates.  The language of the actual bill.

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