The POTScast

For patients with medication hypersensitivities, figuring out exactly what is in a medication can be surprisingly difficult.

In episode 247 of The POTScast, data scientist Mike Brook discussed research showing that the excipient, or “inactive ingredient,” lists in DailyMed drug labels were internally inconsistent in 39% of 100 commonly prescribed drug formulations examined. For patients who react to excipients and rely on these labels to choose safer formulations, inaccurate, conflicting or confusing  information can have serious consequences.

Today we continue that conversation with Mike, along with Nicole and Jeff Allen.  Nicole is a nurse who has MCAS and reacts to several excipients. Jeff brings 25 years of experience as a data solutions architect working with medical and pharmacy claims.  Their motivation to solve this problem is deeply personal. After Nicole experienced repeated severe reactions to a medication excipient that landed her in the ICU for 6 days, Jeff set out to understand the problem and then build a better solution:  ExciIQ.

Together, they discuss the real-world challenges facing excipient-sensitive patients, why current drug-labeling data can make avoiding a known trigger so difficult, and how ExciIQ hopes to help patients and healthcare professionals have better options for avoiding problematic excipients in their medications.

Learn more:
ExciIQ: exciiq.com
Previous POTScast episode: Drug Excipients and Label Inconsistencies with Data Scientist Mike Brook
Published research: Inconsistent excipient listings in DailyMed: implications for drug safety

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

In this episode Dr. Dempsey answers listener questions about Lyme disease, sharing why it can be complex, her treatment approach at different stages, how she starts treatment on highly reactive MCAS patients, thoughts on the new Lyme vaccine, SOT therapy and more.  Dr. Dempsey's episode discussing SOT therapy in more depth can be found here.

Dr. Dempsey's website is https://drtaniadempsey.com/

If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to research@standinguptopots.org.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Emily's daughter had sensitivities since a very young age.  Emily recounts their journey with mysterious symptoms, good and bad medical encounters, conventional and unconventional treatments, faith and prayer, an unfortunate drug reaction, progress and setbacks, and how her family has coped through it all.  

Here are the links for the mentioned RTHM Intelligence platform

and the Long COVID Treatment Guide.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Austin Walker sold his last company in 2020, then got COVID and never recovered. He spent 9 months bedridden, saw 20+ doctors who all dismissed it as stress. He eventually got better by joining online patient communities, collecting what was working from other people, and running self-experiments on himself.

That experience turned him into a patient trying to solve this for complex chronic illness, and he's been working on turning what he learned into a product:  Atlas. In this episode he shares his story of getting sick, learning our health care system isn't designed for complex patients, finding his path back to being largely better again, and now being back to work as a founder creating Atlas.  

Website:  https://theatlasnetwork.ai/

Link to signup: https://chat.theatlasnetwork.ai/
Link to the Atlas Discord: https://discord.gg/YPFgKJAMke

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

After successfully treating his own Long COVID, founding the COVID Institute, treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series, Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.” In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produce very different clinical presentations from patient to patient.

The six primary domains include dysautonomia/POTS, mitochondrial and bioenergetic dysfunction, endothelial and microvascular dysfunction, gut dysbiosis and barrier disruption, mast cell activation/histamine-mediated signaling, and neuroendocrine/hormonal dysregulation. Secondary amplifiers may include persistent immune activation, viral antigen persistence, autoantibody formation, neuroinflammation, sleep-related destabilization, and small fiber neuropathy.

Dr. Groysman discusses how this network model may help patients and clinicians move beyond symptom labels and toward more individualized, mechanism-informed evaluation and treatment strategies for Long COVID and related complex chronic presentations

 Dr. Groysman also offers an online community for patients to ask questions and have discussions with him (and other members) at https://www.longcovidfamily.com/

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.