Fighting sarcoidosis as well as other rare diseases.

April 12, 2021

Episode 33 | John Riffs on an encounter with a Doc who is not Sarc Aware!

As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis...  And how this might have an impact on my own diagnosis with a new medical problem.  I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month!

 

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FSR's fantastic page that includes the media tool kit! https://www.stopsarcoidosis.org/awareness/

  1. April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
  2. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
  3. April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
    April 
  4. April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
  5. April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
  6. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
  7. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents.  This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative.  Please keep an eye on the events calendar for updates on the time and date for this event.
 
FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events
 

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

April 5, 2021

Episode 32 | April is Sarcoidosis Awareness month! Tricha Shivas tells us how to fight back!

April is the month we all re-double our efforts to let the world know we are here.  To tell the world that sarcoidosis exists, that it's a problem.  That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways.  Defense number one for this disease is the Foundation for Sarcoidosis Research.  In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help!  FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fighter Podcast to talk about the many, many events taking place in April to help spread awareness of Srcoidosis.

Don't Forget April is Sarcoidosis Awareness Month!  Here are some links to FSR activities!

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April’s Sarcoidosis Awareness Month Events

  1. April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
  2. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
  3. April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
    April 
  4. April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
  5. April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
  6. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
  7. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents.  This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative.  Please keep an eye on the events calendar for updates on the time and date for this event.
 
FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events
 

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

March 29, 2021

Episode 31 Susan Bassi’s Life slowed to a crawl when Sarcoidosis made its appearance.

Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles.  Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys. 

susand_B_two_shot_smile6xmrh.pngSusan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease.  And she brings special insight to the task because she is living it.  Listen in as she talks about how sarc showed up in her joints and just kept spreading.

Don't Forget April is Sarcoidosis Awareness Month!  Here are some links to FSR activities!

April’s Sarcoidosis Awareness Month Events

  1. April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
  2. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
  3. April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
    April 
  4. April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
  5. April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
  6. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
  7. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents.  This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative.  Please keep an eye on the events calendar for updates on the time and date for this event.
 
FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events
 

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

March 15, 2021

Episode 30 Kevin McDevitt’s sarcoidosis spread from his finger … to his heart!

For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition.  In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly.  Yet he is fighting back and 2021 promises to be much better for him than 2020.

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Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and an adjustment to his diet and lifestyle.   In this podcast Keven shares the details of his harrowing battle with sarcoidosis and all he is doing to get his body and his life back under control.

Also in this episode, I'll tell you about my attempt at the Elimination Diet.  As of this recording, I am 2/3 of the way through the 3 week diet that forbids sugar, dairy and grains.   Plus a bunch of other stuff.  I am doing this under the guidance of Lindsey Norenberg, of Nourish by Lindsey -- whose husband, Ryan joined me on Episode 27 to talk about how he is fighting the inflammation in his body through the use of an anti-inflammatory diet as well as CBD oil.  I hope you enjoy my update and continue to follow along with my progress as I slowly begin to add foods back to see what might trigger an inflammatory response!

Here are links mentioned in the podcast, beginning with those from Kevin.

Parasarcoisosis:: 

https://www.stopsarcoidosis.org/what-is-sarcoidosis/complications/

 
Wahls Protocol: 
 
Yoga Nidra: 
 
Dave Asprey/Bulletproof Coffee
 
 
 
FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events
 

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Background on Elimination Diet: https://www.healthline.com/nutrition/elimination-diet

 

March 1, 2021

Episode 29 Susie Torres fights for diagnosis as she battles Sarc and other illnessess. And - I explore the anti-inflammatory Elimination Diet

In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her.  Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital.

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Note:  I first met and interviewed Susie in early 2020 -- pre-pandemic.  Susie writes that since we did the interview she has had gastric bypass surgery and lost 100 lbs!  She also writes that her sarcoidosis is in remission, but she is still battling another rare disease -- possibly Sjogren’s Syndrome (SHOW-grins), which is is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.

Utah Sarcoidosis Support https://www.facebook.com/groups/2028388207424165/

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Nourish by Lindsey: https://www.nourishbylindsey.com/

https://www.healthline.com/nutrition/elimination-diet

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

 

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

February 15, 2021

Episode 28 Sarc Fighter Andrena Johnson is making a Sacroidosis Documentary

Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness.  Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis.  Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget.  But thanks to friends in high places in the industry, she was able to get it on Prime Video where people began watching it.  Before long she realized she needed to make a big time, full length documentary about sarcoidosis.  In this episode of the Sarc Fighter podcast, Andrena details her own journey with sarc as well as her acting career and how she started her current documentary project.

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Andrena on IMDB https://www.imdb.com/name/nm4315892/bio?ref_=nm_ov_bio_sm

Project Purple Facebook page https://www.facebook.com/Sarcoidawarenessfilm/

Andrena in Coffin https://www.imdb.com/title/tt1667416/fullcredits?ref_=tt_cl_sm#cast

Andrena's production company on FB https://www.facebook.com/ascreativeproduction/

Surviving Sarcoidosis mini-documentary https://www.amazon.com/Surviving-Sarcoidosis-Deborah-Rice/dp/B082DR6N88

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

 

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

February 1, 2021

Episode 27 Diet and CBD - Can they be effective? Ryan Norenberg offers proof.

Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet.  Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease.  There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others.  For many people, these are only marginally effective. 

So you ask yourself, "What if I just ate better?" or "Should I avoid certain foods?"

Ryan says yes.  In fact his wife is now a certified Holistic Nutritionist.

In addition, Ryan has turned to a newer alternative - CBD oil.  In this podcast, he explains how he uses this over-the-counter therapy to reduce inflammation. 

Give the podcast a listen and see if there isn't an opportunity for you to make some lifestyle adjustments, that could improve your situation.

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Additional notes from Ryan!

Lindsey Norenberg's Website www.nourishbylindsey.com

Realm of Caring website https://realmofcaring.org/

Here are a couple related to the Omega6/3 topic:

 

https://pubmed.ncbi.nlm.nih.gov/12442909/

This is an abstract to a research document that one would need to pay for but you can get the idea of it in the abstract provided.

 

https://www.healthline.com/nutrition/optimize-omega-6-omega-3-ratio

This is a good one I found geared more towards the layman.  It explains the importance while providing some specific information about different foods and sources of omega 6’s and 3’s.

As it is with CBD, it is important to get fish oil from a reliable source.  As it is unregulated, there is a potential of high mercury content.  Additionally, it is recommended to consume in a true liquid oil form that is stored and shipped at cooled temperatures vs capsules that have been on a store or warehouse shelf for unknown time at unknown temperatures.  I currently use Nordic Naturals Ultimate Omega liquid available on Amazon and shipped with a cold pack.  I take 2800 mg/daily (1 teaspoon).

 

The probiotic I take is Ther Biotic complete.  This one has 12 strains of bacteria.

 

Here are some related to cannabinoid therapy:

 

Cannabinoids-as-novel-anti-inflammatory-drugs.pdf

This one focuses more on THC than CBD specifically but provides a good overview of our endocannabinoid system and how it works.

 

https://realmofcaring.org/roc-research/research-library/?_sft_condition_=inflammation&_sfm_publication_year=1972+2022

Here is a group related to inflammation

 

Research Library - Realm of Caring Foundation

Here is a group of research articles related to cannabinoids and their impact on immune function.

 

https://store.healthylivingshop.com/

Here is a link to the Cleveland Clinic Healthy Living Shop.  The supplements on this site have been vetted by the CC and they consider trustworthy and reliable.  However, that doesn’t mean that there are not other good options out there but the buyer needs to beware.

 

https://www.charlottesweb.com/

This is my trusted source of CBD.  There are several other good ones out there as well.  They offer different types (gummies, oil, lotions…) and different ratios of CBD/THC ranging from 100% CBD isolate to full plant extract containing up to the .03% federal limit on THC content.

 

R44742.pdf

Here is an article I found describing the legislation that established the hemp laws.

 

Ryan also advises:

 

.03% THC adds up and is not completely negligible in its effects at higher doses.  The Realm of Caring can offer some support here as well. If you do decide to try CBD, I recommend you read up on the “entourage effect”.  You can find some articles on the Realm of Caring Research Library page.  Basically, studies are limited but there is evidence to believe that CBD is more effective in the presence of THC and other cannabinoids vs isolated by itself.  

Charlotte’s Web offers discounted pricing if you register with them and offers further discounts if you subscribe to recurring deliveries.  I have found the subscription to be the most cost-effective way to get it. 

 

January 18, 2021

Episode 26 Amy Cobb is a Nurse Practitioner treating COVID Patients - And Fighting Sarcoidosis in Her Own Body.

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life.  Amy is a mother of three who works full time as a nurse practitioner.  Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19.  In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical professional.

 

Amy_Cobb_2_shot9eng2.png

 

More on the Sarcoidosis Documentary from Mission Purple.  https://www.facebook.com/Sarcoidawarenessfilm/

Atyr Pharma News Release https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-completion-enrollment-phase-1b2a-clinical

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

January 4, 2021

Episode 25 Tracy Bawtinheimer was a world traveling executive until…

 

In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes.  At one point doctors told her she had a one percent chance of survival.  Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis. 

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More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

December 28, 2020

Episode 24 Sarc Fighter Frank Rivera fights long Covid-19

Frank Rivera is one of the loudest voices in the Sarcoidosis community.  But COVID-19 didn't care.  It hit him with a vengeance, then it came back.

In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID"  because it just doesn't go away.

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Despite his condition, Frank continues to work as a volunteer, helping other sarc patients.  In fact, he recently formed a new outreach group called strongerthansarcoidosis.org  to help make it easier for people to get answers about doctors, medications and navigating the tangles mess that is too often between sarc patients and the care they need and deserve.

Stronger than Sarcoidosis  https://strongerthansarcoidosis.org/

Frank's Blog https://lifeasararepatient.blog/?fbclid=IwAR0YpnPmGOgXX6GKxG9SHwetjuye8G4cJCbErhV1yxHSBPf7cLukJSg4k2o

Frank on Facebook https://www.facebook.com/fjr311

Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/

The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/