A Tick Bite Ended my Beef Addiction

Love ya Sam!!!!!

Sam, thank you for being willing to share your story and use your experience to help bring greater awareness to AGS. I'm so proud of you for using your voice to help others and hopefully make a difference! 💚

Hey Sam! Thank you for sharing, and for advocating for yourself and others.

Ticks do suck.

With so many people in the southeastern US contracting this tick-borne illness , especially in Arkansas, this is of itmost importance to get the word out, not just by sharing, but by creating an account here, registering, voting, liking, and then sharing. Please help Sam spread the word and win the contest with his article so that it can help a bill be established to label foods to help save lives of people with Alpha Gal Syndrome. Thank you to all who are reading this and acting on it!! 💚Sam’s mom, Shawna Hutcherson

Hi Samuel,

I truly empathize with what you’re going through. I have lived with Alpha-Gal and other tick-borne conditions for many years, so I understand how much this diagnosis can change your everyday life and how difficult it can be to navigate foods, ingredients, medications, and all the uncertainty that comes with it.

I also encourage you to take a look at the Alpha-gal Allergen Inclusion Act (H.R. 1178), introduced by Representative Jeff Van Drew of New Jersey. The bill would establish federal law to officially designate alpha-gal as a major food allergen.

One of the important goals of the legislation is to require clear labeling of alpha-gal on packaged foods, similar to the labeling requirements already in place for other major food allergens. That could make an enormous difference for people with Alpha-Gal, who currently have to decipher potentially confusing ingredient lists because alpha-gal is not required to be identified as a major allergen on food labels.

Thank you for sharing your story, and keep using your journey to help others. Advocacy is so important!

Advocating for Alpha Gal is a win for the Lyme community as well! We are all in this together for better or worse!

I thought I heard some talks about Alpha Gal being listed as one of the top allergens and it would be included when manufacturer's say their product has processed in a faciltity with nuts, dairy, etc. or may contain nuts, dairy, etc. I could look it up but I am busy reading these submissions. :-)

Sam, I completely agree that mandatory, easy-to-identify labeling for mammalian-derived ingredients and products could make a meaningful difference.

It would also be incredibly helpful for friends and family who want to continue hosting gatherings in their homes but may be unsure of what ingredients to look for or avoid for loved ones living with AGS.

The impact goes beyond simply giving up red meat. The uncertainty surrounding ingredients can also mean losing opportunities for community, shared meals, and normal social activities. Clear and consistent labeling could help families feel informed and confident rather than living in fear or hypervigilance on either end.

I agree this could be life-changing. The goal should be to give people with AGS the information they need to stay safe while allowing them to participate in everyday life as normally as possible, without unnecessarily disrupting the lives of those around them.

I think of it similarly to the increased awareness around gluten-free needs that many of us grew up with… clear information allows individuals to make informed choices and gives communities the ability to accommodate one another naturally.

I really appreciate your story, perspective, and advocacy. 

Well, this is definitely one of the more unforgettable ways to teach somebody about Alpha-gal. 😂 But underneath the humor, you made a really important point: a tick bite can radically alter something as ordinary and fundamental as eating. People hear "tick-borne disease" and think Lyme, rash, antibiotics. They don't necessarily think about suddenly being afraid of what is on a dinner plate. Really creative way to make that reality stick with people.

Thank you for sharing your story and for your advocacy work Samuel. I loved your video - you packed in the main points in your story, while also highlighting a simple and actionable issue of proper labeling. Thank you for including the call to action within your post.

MY HUSBAND DIED FROM 4 TICK-BORN DISEASES & ON HIS 10TH BRAIN AUTOPSY IN 11 YEARS THIS NOV. 2026.                              

my late husband, JACK GORDON, IOWA, was 1st diagnosed with essential tremors for 5 yrs; then PARKINSON'S for 5 years; then dementia crept in bad! 

during the last 2-3 yrs, he was hallucinating in his sleep and visually seeing things NOT there. 

the story i wrote about his/my life can be found here at this site: 

https://durayresearch.wordpress.com/our-work/...sease-patients/ 

the results of his 1st brain autopsy can be found here on DURAY RESEARCH FOUNDATION where they found Jack's brain made world-wide history having 2 diseases NEVER found together before in a brain autopsy: 

·      Lyme/tick disease;

·      Lewy body dementia having the visual and very violent hallucinations like Robin Williams had;

·      a cluster of filarial nematode parasitic worms in brain having LYME TOO!!       

·      Alan became ill before he got his part written up for publication.       

·      So I've been working with Dr. Marna Erikson, Univ. of Minn., who did Jack's 2nd brain autopsy.       

·      She found 2nd TICK-borne disease:

·      Bartonella, 2 species!

·      cat scratch disease and

·      other name represents lice/homelessness, which neither of us ever had!       

·      Hopefully later this year after commitments,  Marna can work on getting this written up and submitted to a scientific medical journal for publication as Alan M. promised me on 1st autopsy.       

·       it took 1 YEAR TO GET HER FINISHED RESULTS WITH ME PURSUING THIS VS. HER GIVING THESE TO ME WITHOUT ASKING!

·      i paid $10,000 for Marna's autopsy of Jack's brain!

·        I gave a very generous donation to DURAY RESEARCH FOUNDATION so other families could have the SCIENTIFIC EVIDENCE they needed.

·       Frankly, both orgs FAILED ME!       

·      Jack was diagnosed 2 nights before he passed away with:       

·      cancer in his lung & liver!

·      his death certificate shows he died from LUNG CANCER; they made a mistake earlier adding COLON cancer in another area. 

·       I caught their error & had that corrected!

·      I'm going to work on amending it for final time with ALL BRAIN AUTOPSY RESULTS ABOVE that contributed to Jack's death.       

·      EACH requires me to go before a judge for  a COURT ORDER to get his death certificate amended and CDC statistics!       

·      IOWA DEPT. OF HEALTH informed me, "books are closed on IOWA CDC statistics; they will NOT open them to add Jack's positive case to them"!

·      WISH ME LUCK;  It's been 3 years to get this far folks!       

·      To date,  I've never gotten any of the Iowa medical folks to work with me on getting Jack's death certificate AMENDED to all the things CONTRIBUTING FACTORS to his death!!       

·      ps..Minn. Dr. suggested I get my blood tested for Bartonella too, the 2 species sending my blood to no. 1 bart lab in USA, GALAXY, NC!! 

·      Guess what?  I'M POSITIVE FOR BARTONELLA, BOTH SPECIES TOO!    waiting to find out treatment plan now!

·        Bottom line EVEN though you are diagnosed with PARKINSON'S,   there may be other diseases INVOLVED in your illness like my husband's was.

·      I had his brain autopsied because of his weird behavior that my gut said,  Betty,  find out what he has vs. what he does NOT HAVE!   I did;  I'm happy with the 2 autopsy results.      

·      https://durayresearch.wordpress.com/our-work/...rative-disease/

·         2.5.2026 updated!

·      5-6 yrs. Ago I started working with BAY AREA LYME FOUNDATIONS “BIO BANK”, LIZ HORN DIRECTOR.  JACK’S BRAIN HAS BEEN TO 10 STATES  & 10 RESEARCH LABS.      

·      Jack’s brain is now at Harvard for his 9th  brain autopsy.   ON HOLD THERE…. They have a “hotter” case they put as no. 1 priority over jack’s case.      

·      10th one is at GEORGE MASON UNIV., FAIRFAX, VIRGINIA, since last summer.       

·        HOPEFULLY, ONCE THESE 2 TB RESEARCH LABS ARE DONE, THEY WILL WRITE A COMBINED 8 LAB CASE STUDY AND PUBLISH IN A MEDICAL JOURNAL AS ALAN MACDONALD PROMISED ME NOV. 2015 !!!      

·      Jack’s brain has been to 10 states, 10 research labs plus 1 year at des moines univ. osteopathic college for study purposes in the 12 yrs. since he died! 

·      I would have NEVER believed it would take this long to get a case study written up and PUBLISHED in a medical journal to help other tb patients/families to educate them as evidence on their loved one’s symptoms and what else it COULD BE!

·      JACK AND I BOTH NEVER SAW AN EMBEDDED TICK.       

·      WE DID NOT HAVE ANY BULLS-EYE RASHES EITHER!!   Grrr.      ************************************************

·         8.19.26--ANOTHER SUBJECT:         

·      NEVER DONATE MONEY FOR BRAIN RESEARCH UNTIL THE CASE STUDY HAS BEEN WRITTEN AND PUBLISHED IN A MEDICAL JOURNAL!!

·         BETTY GORDON, 8.19.26

·      Dr. Alan MacDonald, Florida pathologist, called me about the above saying,  "Betty, you're going to be the FIRST CO-AUTHOR over us 3 medical folks when they gets PUBLISHED in a scientific medical journal !!"·      MARNA failed to submit Jack's case for scientific medical publication too!I am extremely disappointed since I paid both people for results.     ·      ON HOLD THERE; designated staff person had major surgery and is recuperating at home until they can come back to work.9.23.26---sometime this summer another person was assigned jack's case since liz horn, bio bank director, was having horrible time working with virginia!!!·      DM univ. PRESERVED his brain to study and that has allowed 10 brain autopsies to date to be done!!!!thank you dm univ. former funeral director for preserving it correctly 😉DM NEVER told me he PRESERVED JACK'S BRAIN CORRECTLY or i could have pursued an immediate brain autopsy!!·       Betty Gordon, iowa widow/activist·       ·     I was misdiagnosed myself for 35 yrs. by up to 50 drs.  I'M 57 YRS. CHRONIC LYME/BART/CAT SCRATCH DISEASE, 2 SPECIES PATIENT !!·          THIS IS A WHOLE ANOTHER, PAINFUL STORY TAKING 6.5 YRS. TO GET JUSTICE AND BE PAID 75% OF WHAT I DONATED AFTER JACK’S DIAGNOSIS 3 MONTHS AGO to DURAY RESEARCH FOUNDATION.

Thank you for sharing this, and for the humor. Nearly five years of living with alpha-gal while advocating for safer practices is no small thing. Wishing you well.