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About this podcast Sometimes it seems like you need Ninja skills to defeat Lyme disease. Join acupuncturist Mackay Rippey and his producer, Aurora, as they bring you interviews with interesting and informative people who are using their unique skills and knowledge to deal with Lyme and other tick born diseases. My name is Mackay Rippey, I'm an acupuncturist in Clinton, NY (http://www.mackayrippey.com)and the host of Lyme Ninja Radio. I'll never forget the Sunday morning I dragged my sorry-feeling-self to the bathroom and found a perfectly formed bullseye on my left arm. I was lucky, able to return to my acupuncture practice after only few days. It's possible to beat the bacteria that are making you sick. I have and so have many others, but you have to be smarter than Lyme. That's why I created Lyme Ninja Radio. Join us as we talk to some of the most interesting people in the Lyme community.

A message from Sharon: Please support Project Apollo Team as they "Ride Out Lyme to raise funds for Lyme research & to support patients! The 2nd annual event, we raised $10,000 last year. The money is split between BAL to support research and ROL for grants to patients over the age of 26 with financial need. We hope to earmark money raised by ROL La Jolla for San Diego patients in 2021, but this year the money is open to anyone in the US. The mission of Bay Area Lyme "to make Lyme disease easy to diagnose and simple to cure" and we plan to submit a "Measured Lyme" research proposal from Project Apollo in the coming year. Sharon, Mike and Meg will ride as part of the Project Apollo team. Others are welcome! We would love your support as a rider or with donations! To donate to Team Project Apollo visit https://rideoutlyme.salsalabs.org/lajolla2020/t/projectapollo/index.html Let's empower people to realize optimal health!

"Before now, La Jolla biochemist Dr. Sharon Wampler never spoke publicly about the controversy that plagued her father's battle with Lyme Disease. Sharon's father, Whitfield (W.E.) Wampler, was age 92 when he passed away August of 2016. While it's unknown exactly how long W.E. lived with Lyme, his more severe symptoms-including joint failure and loss of hearing and eyesight-spanned over ten years."

Recommended by Sharon Wampler "ABSTRACT Lyme disease (LD) is an increasing public health problem. Current laboratory testing is insensitive in early infection, the stage at which appropriate treatment is most effective in preventing disease sequela. The Lyme Disease Biobank (LDB) collects samples from individuals with symptoms consistent with early LD presenting with or without erythema migrans (EM) or an annular, expanding skin lesion, and uninfected individuals from endemic areas. Samples were collected from 550 participants (298 cases and 252 controls) according to IRB-approved protocols and shipped to a centralized biorepository. Testing was performed to confirm the presence of tick-borne pathogens by real-time PCR, and a subset of samples was tested for Borrelia burgdorferi by culture. Serology using the CDC's standard two-tiered testing algorithm (STTTA) for LD was performed on all samples. LD diagnosis was supported by laboratory testing in 82 cases, including positive STTTA, PCR, culture, or 2 positive ELISA's with EM >5 cm, while the remaining 216 cases had negative laboratory testing results. For the controls, 43 were positive on at least one of the tiers, and 6 were positive by STTTA. This collection highlights and reinforces the known limitations of serologic testing in early LD, with only 29% of individuals presenting with EM >5 cm yielding a positive result using the STTTA. Aliquots of whole blood, serum, and urine from clinically characterized patients with and without LD are available to investigators in academia and industry for evaluation or development of novel diagnostic assays for LD, to continue to improve upon currently available methods."

Recommended by Sharon Wampler "For two decades, Lyme disease has had dueling identities.   A burgeoning epidemic wrought by ticks. A raging controversy over why patients stay sick - and what to do for them.   Now, however, the medical model that spawned the Lyme Wars - enshrined in treatment guidelines that say short-course antibiotics are curative - is yielding to a more nuanced picture.    This new image is of a disease that outwits antibiotics and immune systems; is plagued by diagnostic failures, and is capable of inflicting lasting damage. It is an image that challenges the picture of medical certainty that has long been Lyme."

Impressive line up of patient stories. Are you interested in sharing your story? We'd like to hear from you."

"Yale University researchers have developed a novel vaccine that in guinea pigs offers protection against infection by the bacterium that causes Lyme disease and may also combat other tick-borne diseases. Instead of triggering an immune response against a particular pathogen, the new vaccine prompts a quick response in the skin to components of tick saliva, limiting the amount of time that ticks have to feed upon and infect the host, the study shows. The vaccine is delivered by the same mRNA technology that has proved so effective against COVID-19."

"The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on the issue of diagnostic error. Misdiagnosis is quite common in Lyme disease and the consequences can be devastating. The SIDM website recently featured the personal story of LymeDisease.org's Lorraine Johnson, and the lessons learned from her own experience with diagnostic error. It is re-published here with SIDM's permission."

We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients - annually reaching over 3.5 million unique visitors on our website. LymeDisease.org is grounded in the principles of patient empowerment, participation, and self-determination. We fight to make the patient voice stronger to support science-based advocacy bring about legislative change, and create a future where Lyme patients can receive the treatments they need to get well. LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.

"What is disulfiram and why is it sparking excitement in Lyme community?"

Sharon, telling your story this article is an act of bravery and determination. Your strength is an inspiration.

"Bay Area Lyme Foundation 884 Portola Road, Suite A7 Portola Valley, CA 94028"

"Abstract This study examined the adherence to and the potential benefit of Kundalini yoga (KY) for post-treatment Lyme disease syndrome (PTLDS). Participants were randomly assigned to 8 weeks of a KY small-group intervention or a waitlist control (WLC). Adherence was measured as attendance at KY group sessions. Primary outcomes assessed pain, pain interference, fatigue, and global health. Secondary outcomes assessed multisystem symptom burden, mood, sleep, physical and social functioning, cognition, and mindfulness. Linear mixed models were used to test changes in outcomes over time as a function of group assignment; intercepts for participants were modeled as random effects. Although the target sample size was 40 participants, the study concluded with 29 participants due to recruitment challenges. No KY participants dropped out of the study, and participants attended 75% of group sessions on average, but WLC retention was poor (57%). Regarding primary outcomes, there was no significant interaction between group and time. Regarding secondary outcomes, there was a significant interaction between group and time for multisystem symptom burden (p < 0.05) and cognition (p < 0.01); KY participants reported improved multisystem symptom burden and cognition over the course of the study compared to WLC participants. To enhance recruitment and retention, future trials may consider expanding geographic access and including supportive procedures for WLC participants. This preliminary study supports the need for a larger study to determine if KY reduces multisystem symptom burden and enhances cognition among people with PTLDS."

VLA15 is currently the only active vaccine program in clinical development against Lyme disease. VLA15 is a multivalent recombinant protein vaccine that targets six serotypes of Borrelia representing the most common pathogenic strains found in the United States and Europe. Valneva has completed recruitment and reported initial results for two Phase 2 clinical trials [5,6] of VLA15 in over 800 healthy adults and in which Valneva observed high levels of antibodies against all six serotypes. Valneva announced a collaboration with Pfizer for late phase development and, if approved, commercialization of VLA15 [7]. As part of its collaboration with Pfizer, Valneva accelerated the pediatric development of VLA15 with an additional Phase 2 clinical trial initiated in March 2021. In July 2021, Pfizer and Valneva announced recruitment completion for VLA15-221 with a total of 625 participants, 5 to 65 years of age [8]. The VLA15 program was granted Fast Track designation by the U.S. Food and Drug Administration (FDA) in July 2017 [9].

"Tick-borne diseases, and Lyme disease in particular, cause complex, multi-system health issues with devastating consequences. This event focuses on the importance of using a broad and comprehensive diagnostic and treatment approach. We will explore important avenues for testing and treatment including a discussion on the role that antibiotics play in supporting the immune system: " Sharon Wampler - Keynoting

4 Lessons in Self-Advocacy - Sometimes you have to save your own life.

"New York-based writer Porochista Khakpour has spent 12 years seeking answers to a variety of strange physical symptoms that have baffled doctors, from convulsions and tremors that feel like a panic attack, to debilitating fatigue. She's sought midnight answers for strange fevers and painful gastritis, spent hundreds of sleepless nights fighting with drug-resistant insomnia, experienced rapid weight loss or gains of up to 40 pounds without any changes in diet, and most frightening to her, difficulty swallowing."

Christina P. Kantzavelos, LCSW #73271, MSW, MLIS *She/Her/Ella Licensed Psychotherapist and Writer (619) 797-6383 Free 15-min Consultation www.beginwithintoday.com hello@beginwithintoday.com Follow us on Instagram @beginwithtoday My name is Christina Kantzavelos, and I am a licensed psychotherapist and coach who specializes in treating clients with chronic illness @beginwithintoday, and the author of the Begin Within Journal. I'm also a gluten-free food, travel and health-conscious writer @buenqamino. Lyme Disease changed the entire trajectory of my life. Although, I was likely infected in middle school when we first noticed the cat scratch stretch marks, and strange symptoms (fatigue, panic attacks, fainting spells), they were manageable. Prior to getting 'really sick' in 2018, I was fearless, traveling the world, conducting international humanitarian work, working full-time, eating whatever I chose (minus gluten, and dairy), and essentially, a yeasayer. As mentioned, I had some ongoing health concerns prior to then, but it did not stop me from living my life.