#1355 Bigfoot, Aliens and Diabetes
A child's T1D diagnosis led to the discovery of a rare genetic condition that saved her mom's life.
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Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox podcast.
Samantha is back. She's a returning guest, and she's here today to talk about how her child's type one diabetes led her to find out that she had a rare disease and that saved her life. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com don't forget, if you're a US resident who has type one or is the caregiver of someone with type one, visit T 1d exchange.org/juicebox right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help to Today's episode is sponsored by Medtronic diabetes, a company who's working to make the invisible visible through their blue balloon challenge. Life with diabetes is like doing everything in life while trying to keep a balloon in the air. The blue balloon is a powerful metaphor for the daily struggles that those living with diabetes go through Medtronic invites you to join the challenge by taking a video of yourself balancing a balloon while doing something in your everyday life. Post your challenge on social media with the hashtag, blue balloon challenge and follow at Medtronic diabetes on Instagram to see other blue balloon challenge videos. Today's podcast is sponsored by touched by type one. Check them out on Facebook, Instagram and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes, you're looking for touch by type one.
Samantha Arceneaux 2:13
Hi, my name is Samantha arsenell, and I am in Orlando, Florida.
Scott Benner 2:16
That was easy, wasn't it? Yep, always the hardest part, perfect. You had your voice was all nice. You paused, collected yourself. It was lovely. That's a for everybody listening. That's how you do it. Sometimes I'm like, whenever you're ready go, and before I can say go, they're like, I'm Bill. And I'm like, All right, well, slow down, man. It's like, we're not in a rush. Yeah. So Samantha, you are a past guest. Let's tell people that. Yeah.
Samantha Arceneaux 2:39
So I've been on twice before, and the topic, both times, has been regarding insurance and between how to kind of appeal for things and fight your way through insurance guidelines, as well as how to save a bit of money picking your insurance. I'm
Scott Benner 2:55
going to look to see if I can figure out what episodes you were on. Well, one was
Samantha Arceneaux 2:59
the beginnings, the bull beginnings. So yep. And then the other one I believe, is episode 67 but I could be wrong. It's in the 60s. That's insane.
Scott Benner 3:08
It's episode 61 you were on the show 1016
Unknown Speaker 3:13
Yes, very early on.
Scott Benner 3:15
Oh, my God, that's eight years ago. That's
Unknown Speaker 3:17
fast. That's how long we've known each other. Oh, wow,
Scott Benner 3:19
look at us. But today we're not talking about insurance. We're going to talk about an experience you've had with your kid and your life. I don't really want to direct you through it, so why don't you just tell me the story, and then I'll ask questions.
Samantha Arceneaux 3:32
Yeah. So when I first reached out to you, I had a couple different things going on, and it just kind of seemed like very odd coincidences related to type one, but I think I'm probably the first guest that you'll have on your show who can genuinely say type one diabetes saved my life. So that's kind of like my claim to fame now. So I had a situation where, obviously my daughter was diagnosed with diabetes very early. She was 22 months old. Her name is Michaela, and I was pregnant with my second daughter at the time. And, you know, you kind of go through that panic when you're first diagnosed, of, is this going to be hereditary, where my other child can get it? So I started down this rabbit hole, so to speak, of DNA testing, you know, genetic testing, just trying to, you know, in my Mom Brain, see, you know, does Michaela have one version of a genetic mutation, and does my other daughter also have it? So I submitted all of our DNA through 23andme and at the time, my husband's like, No way. You know, they're gonna store your data. I'm not doing that. You know, total just conspiracy. You know, don't, don't want anything right, like this is also the man who hadn't been in the doctor in like, 10 years. So, you know, typical with the healthcare situation. I did that and realized I can get the raw data. So when you go on 23 me, and you submit for the health they give you your files, and then you can take that data and. Upload it to other companies that will do a little bit of a deeper dive than what 23 me is able to. So I use this company called Prometheus, and it was $10 to upload this data. And it kind of just, it doesn't diagnose you with anything, but it takes studies that are out there and gives them a rating as to how much of a correlation there is to what your DNA is presenting as. So when I did this, I found both of the girls to have something called, and I'm going to Butch butcher this familial hypercholesterolemia. So it's basically a genetic disorder for high cholesterol. And because me and my two daughters had done it, I realized I was not having this same alert kind of come up. And when I researched it, I realized it has to be from a parent, like, there it's it's definitely a parent hereditary thing. So I was like, okay, it has to be coming from my husband, right? My husband's in complete denial. Nope. Not me, not me, definitely not me. So I'm sitting there. Okay, that's that's fine, whatever you know, trying to get him, you know, at least check his cholesterol, not happening. You know, some people might know I am a board of director on touch by type one, which is one of your your brands that you have is on the show as well. And you speak at our yearly conference. Some of you may know we also have the D box, which is a free box that we send out to newly diagnosed patients. But back in the day, when it was first starting, we would sit around, have a small group of volunteers, and we would assemble the box together. A friend of a friend just happened to be volunteering that day, and she was mentioning that she worked for a local hospital system in their research department, and that she happened to be researching, FH, the short name for the one I'm going to butcher clearly. So I go, you know, no way. That's amazing. My kids were recently found to have this, and I'm trying to get my husband tested. And she goes, Well, we have a free study. Like, fantastic. I can get him the study. So I asked him, he's like, No, no way. And I said, Well, babe, why don't I come with you? You know, we'll, we'll both test and definitively see who it is, right? Because in his mind, he's going, it's gotta be her, you know, I'm, I got the good genes, right? That was kind of my sway to get him in, is that I agreed to go with him, knowing I was already negative. So we went in, we it was an easy, you know, swab sample, and they had a little form that said, Would you like to hold on to your sample and compare it to future studies that we meet do at the Research Institute? And, you know, I'm like, sure, you know, keep my sample, compare it. And my husband's like, no way they're destroying my sample. So fast forward two and a half years. I get a call from the Research Institute, and they said, we just want to let you know your sample has come up positive for one of our other studies. Okay, what's that? And they said, it's the RET gene. Never heard of it. They said, well, people with mutations in the RET gene are basically people with multiple endocrine neoplasia, again, have no idea what they this means. And they said, well, people with multiple endocrine neoplasia, it looks like you would be type two. Would basically have a 95 to 100% guarantee in your lifetime of developing medullary thyroid cancer. And I was like, Excuse me, and they said, typically, this is hereditary, meaning everyone in your family line kind of knows they have this because of the prominence of this cancer. So they will start testing babies for this, and if they're found to have this mutation, their thyroids are removed by age five, so that they don't develop this cancer. Obviously, getting this news at 37 like, what does this mean? 32 years late, apparently.
Scott Benner 8:48
But go ahead,
Samantha Arceneaux 8:48
exactly, and no family history whatsoever. So mine happens to be so first of all, let me give you some stats about this disease. So you kind of know it's one in 40,000 people get this, so it's considered a rare disease. Out of those cases, five to 9% are de novo cases, which means there's no family history. So you're taking a rare disease and you're kind of breaking it down even further. And then out of the cases of medulla or me and two, there's 5% of us who have the less popular, I guess you would say codon changes. So like, 95% of those cases are from, you know, certain codons. And then there's, like, the little 5% so I'm like, you're going like, five to 9% are spontaneous mutations, essentially. And then 5% of those are this, you know, even rarer codon at the time, it was like not found until 2014 this variant to begin with. And there's only like 30 people that they've identified in the world who have my particular variant, the thing with 30, go ahead. So the thing with multi. And medullary thyroid cancer is that there are basically no symptoms until you are already stage four. So if you have a symptom before stage four, typically it is going to be diarrhea, which, as we know, a lot of different diseases present as diarrhea stage four. The statistics for survival rates are in the 40th percentile, which means it's a very, very deadly disease. I never would have known I had this disease. Had it not been for my daughter's type one diabetes, you
Scott Benner 10:30
would have just pooped and then died. Yeah, pretty much. Like,
Samantha Arceneaux 10:33
you know, this is like Insanity. So of course, then it's like, you know, the study is, what do you do with this information? It's not like, hey, we have a pill we can put you on. Here's here's what you do. It's like, what do you do? Well, obviously, I'm going to go get tested to see if I already have cancer at 37 when you're telling me, most people are getting cancer in their 20s and early 30s. So thankfully, I will say, you know, I was found to not have an aggressive codon, which means the moderate risk, it could be anywhere from your 20s to your 70s when you develop this. So that's that's kind of like a unique thing that, wow,
Scott Benner 11:08
that's nuts. Now they take your thyroid out.
Samantha Arceneaux 11:11
So that is the possibility. So I actually was in contact with one of the leading thyroid cancer doctors. He actually lives in Tampa, so not too far away. And he said, Listen, you know you are able to test. You know, now that you know that you have this, you can do certain tests. And basically there's something called calcitonin. So interestingly enough, with all your thyroid series, Scott, this is not something that impacts your TSH, your t3 your t4 even though it's all still in your thyroid, you will have still perfect numbers of those levels, because it is going to affect the calcium producing part of your thyroid. So again, never kind of like causes these crazy symptoms where people are going to get tested to see if they have this cancer. For Leah,
Scott Benner 11:58
her husband, plays an instrumental role in helping her keep her balloon in the air while managing all of life's ups and downs.
Speaker 1 12:05
He is my biggest supporter, my biggest cheerleader, my shoulder to cry on
Scott Benner 12:11
this episode is sponsored by Medtronic diabetes, a company who is working to make the invisible visible through their blue balloon challenge.
Speaker 1 12:19
This person loves me and wants to take care of me and wants to understand what I'm going through and help take on that burden. That's why he's my community. He has helped me continue to live a healthy life with type one diabetes and not reach those breaking points. Sounds like
Scott Benner 12:35
between your husband and Medtronic technology, you're able to keep that balloon in the air longer,
Speaker 1 12:39
100% I think it is such a perfect analogy. Because if you've ever tried to chuckle a blue balloon while doing all your other daily tasks and managing diabetes and all that stuff, such a spot on analogy as part
Scott Benner 12:55
of this year's blue balloon challenge, Medtronic will be donating to break through T 1d to support their work to achieve affordable access to current therapies, drive adoption of innovative technologies and fund research for future T, 1d, breakthroughs. Post your video on social media with the hashtag blue balloon challenge and follow at Medtronic diabetes on Instagram to see other blue balloon challenge videos touched by type. One has a wide array of resources and programs for people living with type one diabetes. When you visit touched by type one.org Go up to the top of the page where it says programs there, you're going to see all of the terrific things that touched by type one is doing. And I mean, it's a lot type one at school, the D box program, golfing for diabetes, dancing for diabetes, which is a terrific program. You just click on that to check that out, both for a cause, their awareness campaigns, and the annual conference that I've spoken at a number of years in a row. It's just amazing, just like touch by type one, touched by type one.org, or find them on Facebook and Instagram, links in the show notes, links at Juicebox podcast.com, yeah, in the end, this is a thing that like 30 people are gonna die from. So they're probably not. Nobody's looking for it. Like, yeah, at your age, especially.
Samantha Arceneaux 14:11
So here's the thing too. So if you look at all the black box labels for like ozempic and govi and you know, all of these GLP one and inhibitors
Scott Benner 14:22
take them if you have a family history of medullary
Samantha Arceneaux 14:26
thyroid cancer or multiple endo neoplasia type two. Oh, me.
Scott Benner 14:32
So when they're doing this, like warning, and it's literally for like, a handful of people in the world, you're like, Oh,
Speaker 2 14:38
apparently it's I'm one of them. I was like, Man, that would have been nice to have. You know this drug that I could take to lose weight? No,
Scott Benner 14:46
no, can't do that. Do you know why? Why can't a person with so there
Samantha Arceneaux 14:50
are studies that have shown in rats, so it's not a human study that GLP one in rats, they developed medullary thyroid. Answer, jeez. So they're like, we don't even want to risk
Scott Benner 15:03
it. Everyone listening just thinks of those words as a thing that happens at the end of a
Samantha Arceneaux 15:07
commercial. Yeah, yeah. And it's, it's true, like, there are reasons that some people cannot take this, oh
Scott Benner 15:14
my gosh, that's my first question that almost has nothing to do with this. Has this changed your husband's mind?
Samantha Arceneaux 15:21
Well, at first he was in complete denial that I had me into he's like, There's no way. He's like, there, there's no way. So then we did the confirmation testing that came up positive. No, I you know, do they really want to remove your thyroid? Like, but,
Scott Benner 15:36
I mean, does he think the man's coming for him with his information that they're keeping on their computer, or like, yeah, he's,
Samantha Arceneaux 15:43
he's a little bit of, a little bit of a conspiracy theorist, and that, you know, how
Scott Benner 15:48
many beans and a can do you have in your basement? Just tell me that.
Samantha Arceneaux 15:52
Well, I'm in Florida, so we don't have basements, but, you know, we definitely have had some prepping.
Scott Benner 16:00
Listen, I'm laughing. He'll be the only one left alive one deck. But, you know, Wow, isn't that interesting? Well, I'm glad you pushed through all that. Also. You tricked him into going to the thing I thought that was,
Samantha Arceneaux 16:09
I totally did. But you know what? It worked out for the best, because he actually, you know, I was able to push him to go see a doctor, and now he's able to kind of manage his own cholesterol issues, because, lo and behold, guess what? He did have high cholesterol. Tim, it,
Scott Benner 16:26
it occurred to me while you were telling this story as as bizarre as this gonna sound, because I don't mean it this way, but Well, you're the perfect person to have something like this happen to, because you have the brain to pick through
Speaker 2 16:39
this. So that's interesting, because, yeah, the
Scott Benner 16:43
same bit of you that understands all that insurance crap, like figured your way through, am I right? Well,
Samantha Arceneaux 16:51
the thing with the insurance crap is that in order to even get to that level of doing the appeals, I read through so many different research papers. I actually have a degree in clinical psychology, so I've been trained on how to write these types of papers. Granted, it was many years ago, and I definitely could not do that nowadays, but, you know, at least, kind of know how to pick through that and what I'm looking for. So comp, compiling all of that information, kind of like gave me the research on where to find things, how to get the data I need out of it. And so I found one singular paper about my particular codon that I was able to kind of like use. And then I actually the harder part wasn't necessarily even my husband believing, you know, I have this disease. It was getting my endocrinologist on board, believe it or not, how what happened? Because he was just like, Oh, she thinks she has this disease. It was all like, I'm reading the notes, and I'm like, I think I have this I set you the data that's part of his hospital chain, by the way, right? It came from his geneticist, his, you know, Research Institute. And he's like, she thinks she has this disease, and I had to educate him on what tests I needed. And it was just kind of like, okay, he hit
Scott Benner 18:11
you with the doctor chat. GPT over here tells me she has a rare form of like that. Oh, I see, yes, yeah. And
Samantha Arceneaux 18:20
so, you know, I look at things, you know, I don't know if we ever talked on the podcast about zebra diseases. You know, a lot of people label that as there's one particular disease, but it's also kind of a broader term for people who have rare diseases as a zebra. So when Michaela was diagnosed, I was told by her pediatrician to not look for zebras when it's horses, meaning that it was more probable that she was addicted to chocolate milk than had type one at her age, which is crazy, right, right? Because I'm like, she's peeing. She's asking for, now, you know, milk all the time. He's like, no, like, this is very rare at her age. Stop looking. Stop looking for zebras. When it's horses, she's, you know, addicted to chocolate milk. So as a side, you know, I'm very sensitive when it comes to, like, rare diseases, so to speak, and being taken seriously by doctors, because I've had a bad history of people actually taking us seriously, right? Like, you're, you're saying, like, it's not just Google, like, I'm literally being told this by a geneticist. Well,
Scott Benner 19:22
it's funny. It's the phrase they teach it to him in medical school. When you hear hoof beats, think horse is not zebras exactly because it's more likely that it's a horse than a zebra, and that's how they keep them from falling down rabbit holes, when very often times, the most obvious answer is the right one, except when it's not and then your thyroid explodes after you poop yourself and you die. And yeah, can you imagine? Can you imagine the indignity I have diarrhea. I wonder where that's from and gone? Great. Thanks a lot. Literally,
Samantha Arceneaux 19:55
yeah. So the diarrhea is actually caused by an imbalance in the Cal. Level. So the cancer cells cause something called calcitonin to rise, and then that's what kind of starts the process of diarrhea. So they said, as long as, you know, I'm keeping an eye every six months on those levels, you know, as soon as they start rising, then boom, I've got to do a prophylactic thyroidectomy. But
Scott Benner 20:18
so is that how you're gonna roll with it just again till your toilet paper bill goes up. You're just gonna hold on.
Samantha Arceneaux 20:24
No, no, no. They said, by the time the changes start, because I'm monitored every six months, that it would give us enough time you know, before you know it's, you know, be on stage one for sure.
Scott Benner 20:36
Did insurance give you any trouble with the six month thing? Or
Samantha Arceneaux 20:40
Nope. So far, you know me, even if they did, it wouldn't, you would have stopped them by now.
Scott Benner 20:46
Listen, eight years ago, I tried to get Sam to go into business for herself, just helping people with their insurance problems, and we realized there's no way to make a living at that. And I was like, I actually, I remember saying to you, I don't know why a company wouldn't just hire you, because, you know, so many people get blocked by their insurance when they're trying to get a device or a medication or something. I was like, the company should have an office that you go to and say, Hey, I can't get the thing they prescribed to me. Like, help me get through it. Yes, but Yeah, nobody ever picked up on my what I thought was genius idea. No, I
Samantha Arceneaux 21:16
actually, I actually was in talks with Dexcom at one point to do that exact job, but I did not want to relocate to California so that I
Scott Benner 21:25
don't know if you got your husband out of Florida. He might have, he might have gone to the doctor faster.
Unknown Speaker 21:29
Oh my gosh,
Scott Benner 21:30
I know your husband. He's lovely. Yeah,
Samantha Arceneaux 21:33
he's he's Go ahead, don't you don't have to deal. You've been married a while. No, no, we're just gonna stop there. I've been with him a very long time. He's solid. I wouldn't have kept him around if it was all crazy, right? It's
Scott Benner 21:47
excellent. Also, I think this is good for guys to hear, because I think they're wondering now, like, wonder how many things I've done in my life that I thought were my idea, that some lady like got me to do,
Speaker 2 21:57
right? Well, I did tell you I have a psychology degree. Yeah, no, you
Scott Benner 22:02
were like, I'll get in there. Don't worry about it. It's fascinating. Does this fall back to your kids? Like you have more than one kid, right? Yes,
Samantha Arceneaux 22:10
yeah. So basically, at this point they and actually we're starting that process right as we speak. I have the collection kits on my my dining room table. There's a 50% chance that they inherited it. So now that it's, you know, not, it's de novo and me, but now it would be considered hereditary for future generations, so 50% chance. So we're going to submit that, and we should have the results back within a few weeks to know definitively if they are carrying the same gene mutation or not. So is it
Scott Benner 22:41
possible that somebody in your family's had and you guys just didn't know? So,
Samantha Arceneaux 22:45
I mean, there's always the possibility, of course, right? Because, you know, there's going to mean to be deaths in families that occur before this potentially could have,
Scott Benner 22:54
you know, get hit by a car three years before, you would have got fired,
Samantha Arceneaux 22:58
you know, so, but you know, I will say that I had all of my grandparents live, living until, you know, anywhere from 80s to almost 100 and there was literally nothing. And of course, it would had to have come from somebody. So it's like, okay, yes, they could have, technically have it. But you know, my aunts, my uncles there, there's just nobody, nobody.
Scott Benner 23:22
That's interesting. So it's just randomness,
Samantha Arceneaux 23:25
just completely randomness, yes, and then
Scott Benner 23:29
eventually, but once, once you have it, then your kids have, would you say one and one and two chance? Yeah, geez. Okay. How do you explain that to them? Like, how do you like, I mean, first you gotta tell them what's possibly happening to you, obviously. But then how do you how do you tell them, Oh, guess what? Good news. We're gonna give you a test too. Yeah.
Samantha Arceneaux 23:47
So that was actually concern with you know, that I had talked with the pediatric oncology geneticist department about, and they said, listen, until they're 16, they actually don't have to know the results of their test. So they can decide at 16, or they're going to have to be told at 16, I should say. But they don't have to decide now to know if they have it or not. So that was kind of like our little catch all right now. So they know what's going on with me. They know there's a possibility they have it, but they can kind of be in denial land, as far as if they have it or not. And for you know, my Michael is 13, and my younger daughter is 10, so they have a little bit of time to kind of wrap their brains around it and decide,
Scott Benner 24:32
and then are they gonna, if they have children, they'll have to have them tested as well, like this goes on and on. If
Samantha Arceneaux 24:36
they if they are positive, yes, if they're negative, then it won't be a problem for future, their future generations, but if they are positive, then it'll be exactly the same as it was with me, where their kids will have to get tested, although, now that we know they'll be able to have their children tested, you know, before the age of five.
Scott Benner 24:52
Wow, isn't that something? And you figured all that out because your kid got diabetes,
Samantha Arceneaux 24:57
because my kid got diabetes, and. I just happened to be in that room with somebody who was a friend of a friend. It's just like the craziest unrolling of circumstances that you've ever heard of, right? Yeah,
Scott Benner 25:09
otherwise, you go your whole life and you don't know about this, no.
Samantha Arceneaux 25:12
So what if I hadn't been volunteering that day, you know? What if she hadn't been volunteering that day? What if I hadn't been able to get my husband there, you know, because I wouldn't have done it had it not been for dragging my husband there, yeah,
Scott Benner 25:24
Wow, isn't that? So can I ask you now that you, I mean, I think the answer is obvious, but I'd like you to tell people, like, better to know things than not know them, right?
Samantha Arceneaux 25:33
I am definitely on that board, that train of thought. My husband, not so much. He's just kind of like, if I die, I die, right? Well, you're like, No, I would rather know people
Scott Benner 25:44
say that right up until they're dying, and then they think, oh, I should have, like, you know what? I mean, the should have comes out then, like, I get the wanting to be lucky about it, but if it's going to happen anyway, knowing gives you a chance, exactly. And I think that that to me, that's where my brain lies, like I'd rather try something and be you know, it's funny. I think the way I think about life, like the way I break down problems even, is I go to the end of it and then I work it backwards. And so when you do that about health, there's never a situation where not knowing is better, yes, right?
Samantha Arceneaux 26:22
I mean, look at diabetes, you know, like type two. They could go 10 years not knowing that they have it, and then all of a sudden, you know, they're facing all these complications because their blood sugar has been high. And it's kind of like, Man, if I would have known, you know, I would have done things differently. I
Scott Benner 26:38
started out at the beginning of my my GLP life. You know, I started out by telling this story in my diary about meeting this person who has type two diabetes. Was given a GLP. They were losing weight their a 1c went from over 10 down to like, six, like, and they're telling me this story, and I say to them, like, oh, it's amazing. I was like, you know, how long have you been on it now? And they go, so I don't take it anymore. And I went, why? Yeah, like, just told me this long story about how it's saving his life and everything, and he's lost this weight, and he's still, I'm like, I don't, I don't understand, like, so I figured, oh, something must have happened. Must have a reaction or something, or found out that he has medullary or me and two in his life, right? And no, the answer was, I like food and I can't eat my food anymore. And I went, but you're gonna have uncontrolled type two diabetes and die. He goes, I like french fries. I just couldn't figure it out, like, I, you know, I ran it through my mind every way I could, and I was like, Oh, this is a psychological issue. Like, this guy should go to a therapist, you know, like something, you know, I like being strong. I like being able to eat what I want. Like, actually, you know, I No one's ever gonna know who this is. And so I feel comfortable with this but, but describe to me, I like coming home at the end of the day and taking a bag of frozen french fries and making them all and then dipping them in something. I forget what he said. And I was like, Wait, you're gonna die for Alright, of French fries. Like, my God, like, and so I couldn't. Anyway, a year and a half later, I see this person again. He looks at me, and he goes, Man, you look terrific. And I was like, thank you. And he goes, You really, like, how much weight have you lost? I said, just, you know, about 47 pounds, about 50 pounds. Almost 50 pounds. And I said, but my God, let me tell you about all the like, things. Like, I used to have trouble in like, absorbing iron and like, I had to get infusions all the time, but I don't have to do that anymore, and I feel so much better. And like, I said, I'm honestly, this is the best I've ever felt my adult life back, as far as I can remember, on I said, and the truth is, is I, you know, to some degree, have you to thank for it, because, you know, my doctor was talking about, you know, glps a little bit with my daughter, but I never really thought about it for myself. And then you brought it up, and then I started thinking about it more, and then it became more, you know, popular in the zeitgeist, and I paid attention and like, I'm standing here today because I heard about what happened to you, and I did it for myself. I said, How are you doing? Because I don't take it. And I was like, Can I just ask, what's your a 1c? Now he goes, Oh, it's over 10. And I was like, I'm like, but you're gonna die. And he goes, I like being big and strong. And I was like, I don't understand. I was like, you start taking this a year from now, you're going to weigh 75 pounds less. Your a 1c is going to be in the sixes. And the reaction to that statement, he said to me, he goes, I call he didn't use these words, but I correlate strength with size. I don't want to lose weight, Yeah,
Samantha Arceneaux 29:41
he definitely should do some hypnosis or therapy, for sure. Was that
Scott Benner 29:46
not? What's gonna happen to him? He's just gonna get sick, yeah, you know, and it's just, and they said, I take it. So he goes, Well, I do take it once a year. And I'm like, wait, I don't understand. So for. This person's job, I don't want to say what their job is. They can't have an A 1c that's high. So once a year, when they know that the the test is coming up, it pulls the GLP out of the refrigerator and uses it long enough to get his a 1c
Unknown Speaker 30:14
It's like shedding weight before a boxing match, similar
Scott Benner 30:17
situation, right? And then gets the test, and then gets to keep his job for a year, and then goes back to it again. And I just, I didn't know how not to just feel bad for him, but as I'm talking to him, I'm thinking, this can't be the only person who thinks this way, you know. And I just wanted, I just wanted him to have like, five seconds of how I think about it, which is, you go out into the future and you find the day in your life that the thing happens to you, and you work it backwards and see all the things that led up to it, and realize that on this day right now, if you just started doing this, none of these things happen.
Samantha Arceneaux 30:54
Yeah. And I do think, you know, there is quite a difference between mindsets. You know, I'm a very curious type person, so that's kind of evidence with a lot of things in my life, and it just happens to pass along through the health sector. But, you know, you've got, you know, say my husband, he's like, you know, I don't even have time to think about other things outside of my general little bubble, because he's just go, go, go on his daily things, he doesn't have time, so to speak, for the curiosity. But
Scott Benner 31:24
your brain says, you know, when you won't have time when you're dead, because we didn't do this now, right? Like, that's how you think about it, right? I want
Samantha Arceneaux 31:32
to bring up something else too. You know, we were talking about coincidences with diabetes, and this one, I think, will be, you know, along the spectrum of conspiracies. Right by, I love the conspiracy. Go ahead. Yes, so. And part of, part of the whole thing with my husband is he is in the solar energy field. So, you know, he does run across quite a few preppers. And, you know, end of the world tight. So it kind of like fuels that mindset. But he works for, at the time, it was a considered a small company, you know, maybe had 50 employees Max. Out of those 50 employees only, you know, a handful actually had kids during the certain time. So you're talking maybe 15 kids Max, and three of them all aged within a year of each other. So it's three girls who are, you know, within 12 months of age of each other, were all diagnosed with type one. And I was going, you know, what kind of Erin Brockovich situation are we dealing with, that three out of like 15 kids all the same age would be diagnosed with type one. Like, statistically, you're talking one in 400 kids are diagnosed with type one. So you would need, you know, theoretically, 1200 people, 1200 kids, you know, and how many employees? So I'm just sitting there thinking like, Okay, is there something in the water? Is there something in the dirt that was brought in? And it just got me thinking about clusters at type one diagnosis, and I found another one in a city not far from here, where a lady was telling me her son the backyard neighbor, so literally, their backyards touch, and the person who was on the corner, three Boys all diagnosed within six months of each other. And I'm like, Okay, I I'm starting to kind of pick up that there's heavy usage of fertilizers in this general area, both where my husband used to work, as well as the land it used to be orchards and farmland. So I'm like, you know, is there some kind of like thing, you know, Aaron Brockovich, if you're listening, start researching Central Florida, because it's very, very odd to me that so many people are in these little clusters. And I hear it time and time again, specifically related to geographical location that you know, there, there was a school in Georgia that had like, 16 type one seniors at their high school. It's kind of like, what, what is in the water, what is in the land? How could that? That's kind of my tangent. You know, the conspiracy part of me easily
Scott Benner 34:12
get me to think about this, yeah. And you go, Uh huh. This makes sense.
Samantha Arceneaux 34:17
Well, because everybody always says, you know, I don't have family history. I don't know how my kid got this, you know, and it just kind of leads you to, well, what is like, kind of the trigger on this?
Scott Benner 34:29
Oh, my God, listen, I, I have no idea about anything, but I'll tell you right now, if a certain fertilizer was used and it changed people's gut bacteria a certain way, and like, you know, I there's, there's got to be, to your point, like, in the teens, number of people all in the same grade. Come on. You know what I mean? If that's random, then, Boy, that's a weird form of randomness. It definitely should be looked at. How would you not want to look at something like that? Yeah, exactly.
Samantha Arceneaux 35:00
I mean, there are people are always asking, you know, how did my kid get this? And I'm like, Listen, you know, I have a theory. I have a theory. Obviously, genetics do play a portion of the role, but for those people without and it's not just to say type one, it could be, you know, many autoimmune diseases fall under this kind of like difference in how the body's processing their exposure to the environment. Like you said, the gut bacteria or inflammation in general, when you have that situation and it's clustering, I do think that it's kind of like a glaring light, like should be shown on, on the area, yeah, what is in our land?
Scott Benner 35:37
Yeah. Who's doing that? That's the problem, right? Who are you going to get to get that get that one accomplished? It's easy. When you look and you're like, Oh, my dad has a thyroid thing, and there's a type one uncle and like, and then my he married my mom, and my mom has celiac and like, but, you know? And they go, Okay, well, that makes sense, right? You know? But yeah, to your other point is, like, Where does all that start? Why are there so many autoimmune issues? Why do they grow over time like this? It's got to be environmental to some degree. Yeah.
Samantha Arceneaux 36:07
I mean, you know, a lot of people point out, oh, you know, the vaccine loads are higher than they used to be, and that's why we have so many more instances of, you know, auto immune. And I'm, I'm thinking like, I'm not discounting, you know, anything, but I do think that it is very much more probable that it's something inflammation wise, or, you know, getting absorbed, you know, some kind of, you know, they, they're talking about how many, you know, plastics are, even in our waters and stuff. So just something along those lines, entering the body, causing a shift in how the body reacts.
Scott Benner 36:40
Well, I can tell you what chat GPT said, no, no. It said, I said, are auto immune issues increasing in the US? It says, Yes, auto immune issues appear to be increasing in the United States as well in other parts of the world, for reasons. The reasons for this rise are not entirely clear, but several factors are believed to contribute to the trend improve diagnostics and awareness. So advances in medical diagnostics and greater awareness among healthcare providers have led to more frequent identification that makes sense environmental factors, exposure to environmental toxins, pollutants and chemicals have been hypothesized to trigger auto immune responses in genetically predisposed individuals, factors such as pollution, industrial chemicals and heavy metals, may disrupt immune function. Hygiene hypothesis, this is in quotes, is suggest that the reduced exposure to infectious agents due to improved sanitation and medical practices may lead to an underdeveloped immune system. The lack of exposure may cause the immune system to become overactive and mistakenly attack the body's own tissue. I've heard that have Possibly, yeah, the George, that's the George Carlin joke, right? I used to, I used to swim in the East River with like, needles and poop. And, you know, I have never been sick a day in my life. He did die of cancer. Eventually, I think diet and lifestyle changes, modern diets high in processed food, sugar and unhealthy fats, along with sedentary lifestyles, have been linked to inflammation and immune system dysfunction. The gut microbiome, which plays a key role in immune regulation, can be disrupted by poor diet, leading to an increased risk of autoimmune disease, genetic factors, increased stress level, and then the last one says vaccination and immune modulation. Some researchers have explored the idea that vaccines and other immune modulating treatments may contribute to the development of autoimmune diseases in susceptible individuals. Yes, though, this remains a controversial and complex area of study with mixed findings. So I mean, these are just like you know, the theories that chat GPT can find it says examples of autoimmune diseases on the rise are celiac disease, MS, Ra and type one diabetes.
Samantha Arceneaux 38:48
So yeah, I mean, and you know that it doesn't have to be necessarily even one certain answer, but you know if, if someone out there is looking to study Come, come to Central Florida, and we can kind of narrow that environmental went down. It
Scott Benner 39:02
will point you to a patch of dirt.
Speaker 2 39:03
I'll give you a couple streets. I'll give you a couple of streets to go test, right?
Scott Benner 39:07
That's like, they, when they would, you know, they put up, like, those high tension power lines. Then people started getting, like, cancer, certain kind of cancers, yeah. And then people are like, I think everybody living on the street has brain cancer. That's got to be a thing, right? And then they figured out that, oh yeah, we shouldn't have done that. And
Samantha Arceneaux 39:24
yes, I mean, there was even with my husband, had a brother who was born with gastroschisis, so basically his intestines were born outside of his abdomen, and he was a cluster, you know, it was on a military base in the the southeast. I won't get into specifics, but it was back in the 70s, and there was like every single baby was born within a certain time period with gastroschisis, and they all died. You know, it's definitely there's environmental things that can wreak havoc on your body. Yeah, yeah, don't
Scott Benner 39:54
google burn pits for God's sakes. I
Samantha Arceneaux 39:56
know I unfortunately have, because my brother is military. So I made that mistake years ago, when he was overseas and learned things I did not want to know about the risk. Jon
Scott Benner 40:05
Stewart tried really hard to shine a light on that last year. I think I remember about the military burn pits. Yes, it's awful. Yeah, when fighting desert wars, we throw our garbage into a pile and light it on fire with jet fuel. Yes, yeah. So including all
Samantha Arceneaux 40:22
of those plastics, you know, like everything gets burned. So imagine inhaling that along with jet fuel, yeah, and what that does to your body.
Scott Benner 40:30
Guys would describe women too, right? That just the wind would shift, and then that would just roll back on their encampment, and then they were all standing in it. So, yes, yeah. I mean, listen, I don't want to say obviously, but obviously there's Yeah. How many people I don't even know the Listen, I don't know the possible science behind this, one way or the other. But how many people grab a plastic bottle of water, put it in their car, leave it in their car. Their car heats up to 150 degrees in the summertime, day after day, and then one day you're stuck and you drink that bottle of water. Like, is that okay? Like, you know what I mean. So
Samantha Arceneaux 41:07
I am kind of a germaphobe, I will say. So I actually will not do that, and have taught my kids not to do that, because I am so, like, worried about the leeching of the plastic into the water. I'm
Scott Benner 41:21
with you. Don't get it. I try over and over again in my life, I tell people I'm like, I don't think we should be drinking out of plastic. I don't think we should be microwaving plastic. I think that it's a simple little thing, and I don't know that in my lifetime, I'm going to be able to prove it to you that it's a good thing. We didn't do it, but I don't think we should do it. I don't think you should cook on a pan that has the non stick, the non stick stuff. I don't think you should do that. I think take a nice metal, stainless steel pan, light it on fire, put a little butter in it and cook, you know, don't spray. I don't want to use a name, but don't spray a non stick. Spray on your pan. I think it has silicone in it. Don't do that, you know, like, so it's everywhere, right? Like, and is that the price to pay for a modern society? Like, you know what I mean? Like, if we were all growing food out back, we wouldn't have a lot of the things we have. And I don't, I don't know. Is that a bad trade off? A good trade off? Well,
Samantha Arceneaux 42:19
you know, they're talking about singularity. I don't know if you read the news the other day, there was a thing about a theory in the 2045 ish, I'm going to be off by potentially a decade, but they're calling it singularity, which is basically where humans merge with some kind of technology, whether it's nanobots helping, you know, to improve the bodily functions, or, you know, implants, they're predicting by, you know, within 20 years or so, that we will be gaining, or at least leveling off for every bad year that we're going, kind of like towards death. It's going to reverse that, or at least keep it.
Scott Benner 42:59
How long do I have to stay alive. What'd you just say? Yeah. So
Samantha Arceneaux 43:02
basically, within 20 years, they're saying that technology will improve to such a degree that it will allow it to meld with us at some point, to extend our life or keep us from dying an early death. I should say, Oh
Scott Benner 43:17
no, listen. And isn't it interesting? Because if you let's say that happens. Let's say that one day there's a Jetsons pill you take, and a bunch of little robots jump inside of your body, do all the things that you figured out with genetic testing, and then come back and write a report and go give her this, this, this, this, take that out. She's gonna live to 150 if you look back on that, 500 years from now, you're gonna say, well, it was worth it, right? Like it was, it was worth what we went through to modernize technology to the point where we came up with this thing. And yes, there was 150 years in the middle where people's joints hurt and a lot of them got type one diabetes and but that don't help you today. Like, that's not a story I can tell my kid. Hey, you know what I mean, don't worry, because hundreds of years from now, people you've never met before are never even going to be sick, and she's going to be like, Yeah, well, I got to take insulin for food. So call that. But
Samantha Arceneaux 44:09
they're, they're claiming it could be as soon as 20 years. I said it, it was like a once the computers had, like, a trillion, and I'm going to slaughter because I know nothing about computer technology, but trillion basically, like thoughts per second. That was the time frame of when technology will really ramp up. And they believe that will happen, yeah, within the next 20 years.
Scott Benner 44:31
Well, listen, I mean, we're not in the infancy of it right now, but it's just starting to really blow up.
Samantha Arceneaux 44:38
I mean, we already have smart insulin on the way. You know, I
Scott Benner 44:40
saw a news report about that again, that there people are looking at that again. Yeah,
Samantha Arceneaux 44:45
it's down, down that rabbit hole that, you know, not that it's a bad thing. You know, we're already starting to see the the beginnings of that.
Scott Benner 44:53
Sam, if you saw the minimal amount of words I put into chat. GPT four, oh, to help me with, like. Conversation with you today. I typed familial hypo cholester Emmy. And so I just, I didn't ask it a question. I just typed it in and it gave me an overview of it. Then later, you said, r, e, t gene. I typed ret gene. I have a breakdown of that. I couldn't remember the saying about doctors and zebras. I said, What's that saying doctors use about zebras and please, the phrase is commonly used in medical training and practice to remind doctors to consider the most common and likely diagnosed first, rather than jumping to rare or exotic conditions. And there's more. I typed our autoimmune issues increasing in the US, and I got everything that we just talked about. It's astonishing at the level it's at now, and when it can start identifying a problem and then giving you an answer to it, you know, as long as nobody types in, shall we play a game? I think this is going to work out really well for us, which is a joke I used in another episode with Jenny. And she's like, I don't know what you're talking about. I'm like, Jenny, you've never seen war games, you know? I know there's a lot to be concerned about, and there's probably people listening like, AI is going to kill us all. Your husband's probably listening going, I got beans in a can. We're going to be okay, by the way. How long to be watch this. How long can beans stay fresh when canned, canned beans can stay fresh for a long time, if stored properly. Here's a breakdown shelf life of canned beans. I can write a report on it. Now, from that anyway, my point is I know that AI is scary and I know that there's a possibility it's going to go the wrong way, but I choose hope. And what Sam is saying is not crazy, like it is not crazy to think that one day you'd be able to just say, here's who I am genetically. Tell me how to stay alive longer. You know, you know, and that you might end up with an answer and but people are like, I don't want to be paired with a robot. Your phone is already you're already paired with a computer. Don't worry. You know what? I mean, like, Wouldn't it be nice not to carry it around?
Samantha Arceneaux 47:00
I mean, could you imagine, you know, even 20 years ago, having, you know, the internet at our fingertips, you know, it's, you know, we had a pager where we would, you know, write 8008, to spell out a words, or 3003
Scott Benner 47:15
so I went back home recently where I grew up, and people who listened long enough might Know that I was a volunteer fireman for some years when I was a teenager, and the firehouse, before paging equipment, had an air raid siren on the top of it, and the town was so big that it spun so that the noise would get shot around, so that firemen would hear that and go to the firehouse right And because it's also an air raid siren. Apparently, they never shut it off, even after technology came. So I was sitting there the other day, and I'm like, Oh my God, that noise. I haven't heard that in years. And it's this air raid siren going off telling firemen, like, come, come to the firehouse. And I said out loud, I'm like, why are they doing that now? Like, there's pagers, like, there's and then I went, what am I saying? It's probably an app on their phone now, yeah, like, I was thinking of how, like, when I was younger, they were like, Oh, we're gonna give you a page and we used to carry this brick on our side in case, and it would beep, and you'd go to the firehouse. And then I started talking about, like, I sound so old, there's pagers, pagers, there's an app. I mean, there's,
Samantha Arceneaux 48:20
there's probably a generation listening Scott right now, who don't know what a pager even looks like. Thanks. Oh,
Scott Benner 48:26
and why would they? How would they know that my first cell phone came in a nylon bag, it had a cord on it, and I plugged into my cigarette lighter in my car. Except those people don't have cigarette lighters in their car, so they don't even know what I'm talking about when I say that, you know.
Samantha Arceneaux 48:39
And honestly, you had to be rich to be able to have a car phone. I mean, that was like, Epitome, you've made it if you had a car phone. Can
Scott Benner 48:48
I tell you how I scammed that? I was friends with a bunch of cops, and they got a deal for the phones, and I got in on that. Of course, you did. You got to know
Samantha Arceneaux 48:59
somebody. You gotta know somebody. You
Scott Benner 49:00
gotta know somebody. So I had the phone Place Right Time. Phone was free, and I can still picture it and but I never used it. It was literally an emergency device, because a phone call cost 99 cents for 60 seconds. So nobody used them. They just had them. It was ridiculous, but, but it makes the I hope people understand that this conversation makes the point like, you got to do the thing so you can improve on the thing, so you can get to the point where it's now. I mean, what do they say? My iPhone has more computing power than what we shot. Like the guy said to the moon, I've heard that. And we all have more access to information than the President had in the 80s. Do you know more about the world right now than Ronald Reagan knew when he was the president of the United States?
Samantha Arceneaux 49:51
That's insane. Yeah. I mean, and I grew up in that generation. You know, they call my generation like the xennial. So I'm kind of stuck between an ex Gen X and. Millennial, where you know that that was our first thing. I had the encyclopedias at home and but then I also was able to have internet at one point and in my high school. So
Scott Benner 50:09
yeah, now, I mean, there was a world where an encyclopedia, my mom and dad bought a set of encyclopedias on a layaway plan. We'd get one book like every they were expensive. They
Samantha Arceneaux 50:19
were like, five, $600 for a set of knowledge. Basically, like, yeah, otherwise you had to go to the library. So
Scott Benner 50:27
the library, yeah, when I was a kid, I was allowed to use I was one of the few kids in my class that was allowed to use the Dewey Decimal System, like the card catalog, yeah, I understood how to use it. And the librarian was like, you can use it. They can't. I was like, yeah. Dum, meanwhile, I've read like, three books on my entire
Samantha Arceneaux 50:47
Oh, no. I'm a big bibliophile, so I love books, but now they're all in my Kindle, so I don't have to go out of my house to acquire them. I saw
Scott Benner 50:58
a lady floating in the ocean with a kindle the other day.
Speaker 2 51:02
You know, I don't blame her. If I had the waterproof version, I would too. I was
Scott Benner 51:06
very impressed. She's out there just reading. I'm like baking. I'm still flaking all over the place, by the way. Oh, Scott,
Samantha Arceneaux 51:13
I had one more circumstance, and I want to get your opinion while we're still on. So I have another theory, right? It was obviously, is age subjective, because my daughter was diagnosed at 22 months, but she was sick on Christmas Day. She ended up being diagnosed in March, so you're playing with about three months there, and she was 18 months old at Christmas time, she got sick. And I immediately started noticing, like her energy started going down, meaning she didn't necessarily want to go up and down the stairs by herself before she would just fly up the stairs fly down. Now she was more cautious. Didn't really want to go up them. She wasn't having the language explosion that they always say 18 month olds have where they're gaining, you know, a word a week or so, or even a couple words per week. Just those are the steps the pediatrician says will developmentally happen with kids that age. She wasn't progressing, she would have maybe one new word a month. You know, you're talking about three words in the time between Christmas and the end of March, the day she was diagnosed, and we were introduced to insulin at the hospital. Scott, I kid you not, she had three new words in one day. And so I go back, and I'm like, you know, thinking about it, I do think type one diabetes had a huge role and a developmental delay, you know, not so far as to this could be a symptom. But it does make me question, if someone is seeing kind of those reversals or stationary kind of growth in their kid, is this something related to sugar? Is it because she did not have the insulin unlocking those cells to cause, you know, this action of learning new words in the brain. She just did not have enough energy to do that, because she was focused so much on the actual physical energy, those gross motor skills, that she didn't gain the developmental portion of learning the, you know, the words. So just kind of like throwing it out there to see if you've heard this before. Is this a new theory?
Scott Benner 53:24
Well, I've never heard anybody say that, but it made a lot of sense to me, and of course, I went to my overlord and
Unknown Speaker 53:32
CBT. What did they say about it?
Scott Benner 53:35
It could. My question was, can undiagnosed type one diabetes impact a child's development prior to the introduction of insulin says yes, and here are the ways growth delays, poor nutrition utilization, muscle wasting, pretty obvious, but cognitive and neurological effects, hyperglycemia, high blood sugars, prolonged high blood sugar can affect brain development and function. Cognitive impairments, such as difficulties with memory, attention and learning may occur.
Samantha Arceneaux 54:02
Ah, okay, maybe they pulled that from my blog from yours ago. Not
Scott Benner 54:07
funny. It wouldn't it be great if, like, learn
Unknown Speaker 54:09
it somewhere. Hold
Scott Benner 54:10
on a second. Watch this. I'm gonna copy that, paste it and say, Where did you get this specific passage?
Speaker 2 54:20
They're like the defunct blog says it's general
Scott Benner 54:23
medical knowledge and understanding of effects of prolong hyperglycemia, cognitive function. Sources information include medical textbooks, reviews, clinical studies, guidelines from health organizations like so, you know, it's funny. I have an episode called, what is it called? I have an episode about this because it is a thing that, generally speaking, people don't believe. I used to say a lot more when I was younger, when I was younger, when the podcast was younger, I would say, I want my daughter's blood sugar to be low, normal and stable, so that she can be the person she's meant to be, because higher blood sugars impair you. Yeah. And do you have any idea how many people write and go, you don't know what you're talking about. That doesn't
Samantha Arceneaux 55:04
happen. I mean, you know how many research studies I've witnessed? You know, at the time that this was going on, and I had my hypothesis, there was really only one or two studies out there, and they were all talking about, after diagnosis, what is the effect of hyperglycemia on the brain, you know, MRI studies, or CAT scan studies about the changes in the brain when it's constantly exposed to hyperglycemic, you know, events, or, you know, just the ongoing high blood sugar trend. So, you know, I've never really seen anything that addresses the before diabetes diagnosis, because nobody pays attention to that stuff, because nobody pays attention. So I'm going, you know, think for those people who are listening, and they had kids who are diagnosed around that 18 to 22, to 24 month period when they're supposed to be learning or, you know, it might not even be that they were having mental blocks, because my kid was very energy focused on the physical so it could be reversed. Maybe they're learning the words, but then they're not progressing the way that they should, with walking or, you know, doing those gross motor skills. You know, they're only having a certain amount of energy. Where is that energy getting expended?
Scott Benner 56:18
I just listened to Mark Cuban the other day, talking about the that pharmacy business he started, and he was talking about one of the ways it got like he he had the idea, and I forget what it contextually. It's not important. But what he said was he realized, when he saw that, remember that guy that put that cancer drug price up and he got thrown in jail. I don't remember his name.
Samantha Arceneaux 56:40
Oh yeah. The younger guy, I
Scott Benner 56:41
remember right, but when he Cuban said, I'm gonna get this mostly right, he said that when he saw that somebody could just wildly change the price of something, and that it was just okay for so long, what it made him think was nobody knows what's happening. This entity exists, but nobody really understands it well.
Samantha Arceneaux 57:02
That's because PBMs are shrouded in mystery themselves. Nobody can even tell you what a PBM does these days, right? And they're huge drivers of the cost of our medication. So, you know, you shroud the whole process in mystery. And really, it comes down to money making businesses money. They don't want you to know that they're making money hand over fist, right?
Scott Benner 57:22
Yeah, exactly. But his point was so, so much, I expanded on it my head, which is, how many things do we all do every day? You don't even know why you're doing it. It just happens, and maybe there are some people taking advantage of it. But what about the situations when nobody's paying attention, but nobody says anything, because it all just sort of seems okay. I feel like that's what you're talking about. Like maybe nobody talks about developmental delays with undiagnosed kids who will eventually have type one, because they don't know what's happening. And then once they know they have type one, the focus isn't on looking for that sooner and other people. The focus is, well, let's fix it now for this kid, because now we have a diagnosis. But you know, going back to my original point about this episode, 485, it's called altered minds. We had to make an episode about it because so few people believed that vacillating or high blood sugars could change, it could impair you. They're willing to believe if you're low, you're impaired, but not if you're high. It
Samantha Arceneaux 58:22
is definitely both, and the research is out there, so I don't know why this is such a controversial thing, for these people to write in and tell you you don't know what you're talking or for
Scott Benner 58:33
the same reason, your husband doesn't want to go to the
Samantha Arceneaux 58:35
doctor, right? Well, he's just in denial land. But you know, people with
Scott Benner 58:39
type one diabetes don't want to think like something that I'm trying so hard to handle and maybe isn't going the way I want to is now impacting like the words coming out of my mouth, or my ability to understand something, or the way I saw it originally with Arden, which was if her blood sugar got much over 180 she literally slowed down when she was running. Her foot speed decreased. Yep, it was one of the first things that I recognized when she was playing softball, is like, Oh, if I let her blood sugar get too high, she can't perform well.
Samantha Arceneaux 59:06
And I've heard the same thing. And when my daughter's blood sugar is high or low, she says, you know, my knees don't work. And you know, that was, that was her explanation when she was little, my knees don't work.
Scott Benner 59:18
Yeah. So I'm just saying stability, low and stable, not low, too low, but low and like normal and stable gives you the best chance to be who you are, and to expand on that further, and to kind of shine a light back on what you were saying. What else is happening to you when that glucose is in there that doesn't belong there, exactly right? Just because these are the things we see doesn't mean these are the only things that are happening. It's
Samantha Arceneaux 59:42
incredible the amount of knowledge we have versus what is still out there to be learned. I think that's it. Yeah, that's overview of this episode, right? Like the things we don't know.
Scott Benner 59:54
Well, then we'll just put the nanobots in.
Samantha Arceneaux 59:56
I wish, right? Can they take my thyroid out for. Me too, so I don't have to go through surgery,
Scott Benner 1:00:02
I would imagine. So one day they'll just, they'll send in a nanobot with a with a knife. It'll just
Unknown Speaker 1:00:09
exactly, oh, man, I wish. Do you want
Scott Benner 1:00:12
to know what the current state of nanobots medicine is? Sure, nanobots are being developed for various medical applications, including targeted drug delivery, minimally invasive surgery and diagnostics. However, these applications are mostly in the experimental phases or in early clinical trials. Some research has focused on creating nano scale sensors that can detect biomarkers of diseases within the body, such as cancer cells, pathogens or even specific genetic mutations. These sensors are designed to provide real time data and may eventually be integrated into nanobots for an in body diagnostic goes on talks about, I mean, they're,
Samantha Arceneaux 1:00:49
they're doing the diagnostic too. I mean, think about, you know, colonoscopy, or, you know, those types of procedures where they're just sending in, you know, cameras or or or bots, basically through your gastro system in order to see what's going on. I
Scott Benner 1:01:06
swallowed a camera when my iron was low, when I originally finally figured out that my iron was so low. When you're an adult and there's no bleeding, they think you have cancer if you have low iron, that's the first step, right? So I went to the doctor. And he goes, Okay, you know, take this with you. It's all charged up. Keep it with you all day. Wear it on your hip. I forget what it you know, is like the train is like, catching the signal of the video. And he's like, and right in front of me, take this pill. And I was like, What is this? He goes, it's a camera. So I swallowed the camera, and then it took images as it went through my system, and then they reviewed them.
Speaker 2 1:01:40
I mean, that is a very intimate procedure.
Scott Benner 1:01:43
Let me tell you. I said, What? What happens, actually, you know what? I said, I was screwing around, yeah. How does it come out? I go, like, do you want it back? And he goes, No, no, it's okay. When you're done with it, let it go where it goes. And I was like, gotcha. But yeah, just really, I mean, that's that, is this just in today's technology. It says, near future, five to 10 years, we'll see the first generations of nanobots, or nano scale devices used in specific controlled environments, such as cancer treatment or for targeted drug delivery. Midterm 2010, to 20 years, more advanced than about capabilities performing complex diagnostic tasks inside the body may begin to see broader clinical use, and 20 plus years they're hoping for fully autonomous diagnostic nanobots capable of navigating the body.
Samantha Arceneaux 1:02:29
What do you think will come first, Scott, the cure for type one, or the nanobots that cure pretty much everything?
Scott Benner 1:02:35
I Yeah, right. Well, you know, if you want to be cynical, or if I was gonna be your husband, what I would say is, if they know these nanobots are coming 30 years from now, why are they gonna be busy worrying about curing something that 30 years from now the nanobots gonna cure anyway?
Samantha Arceneaux 1:02:50
Well, I mean, there's a whole sector, you know, I hear it repetitively that there's the whole sector of people who believe there are already cures for many, many things, and that it's financially, not to the company's interest, you know, to release it so, you know, it's,
Scott Benner 1:03:06
I don't know, like, also, I think that light you ever heard the light bulb story is the GE story about The patent,
Unknown Speaker 1:03:15
or the light bulb. Oh,
Samantha Arceneaux 1:03:21
you mean Edison versus burnout, yeah, so that, you know, I grew up in Fort Myers, where Thomas Edison used to have a winter house, and that was, you know, a highly regarded story where he had a worker who actually invented something, you know, either the filament or parts that had the light bulb work. And Edison took the credit for it, and it might have even been Tesla. I'm trying to remember who there was somebody else, and Edison took the credit, supposedly.
Scott Benner 1:03:49
So that's not the story I was thinking of, and chat GPT knew exactly what I was thinking of, and says it's a myth, an urban legend, but the way I heard it, growing up, when it's a conspiracy theory, there was this guy. He came up with a light bulb that won't burn out. He went to GE and said, I've developed the light bulb that will never burn out. Is revolutionary. And they said, We want to buy it. Bring it in, bring all of your work, etc. They brought him into a room. Said, this is these are all your samples, yes. This is all your data, yes. And they paid him for it and burned it all up in front of him. That's the story I heard growing up. But that story, which I'm not the only one that heard, because chat GPT knew it immediately said, it says that it's an urban legend, so, but I think that kind of stuff gets it into people's heads. I believe that if there was a cure to something, we would know about it. And I go on the theory that people can't keep their goddamn mouth shut. So if somebody, especially in a world of social media, somebody would know and be like, I'm gonna be famous for this. And they and they, they'd spill the beans unless that's true, yeah, and you can't pay everybody off get an Amy. You. But is it,
Samantha Arceneaux 1:05:01
I wonder, though, too. So, you know, I don't know if you know this based on, you know, monitoring the Facebook groups, but obviously you've heard of the Fauci lab, and my daughter was actually part of that study. And it's kind of fascinating when you're looking at, you know, the roadblocks that have kind of come from these studies, where it's like you maybe we could get to some, and I won't say a full cure, but a functional cure, if only there was more funding available. Where? Where does funding typically come from? Companies who are looking to purchase, you know, the patent so they can make money one day. So when you're using something that could also be used for something else, meaning someone's already made the money on it, then suddenly they're not interested. So, you know, it makes me wonder, what do we already have that could be applied to other things, but nobody's looking for those things, because it does not make those people money in that
Scott Benner 1:05:54
moment. Yeah, like, like, maybe even, like, not using Dr Fauci as an example, but maybe they started on one idea, and it didn't really work out like that, but it does have other applications, but people can't figure out how to make money with the application, so nobody funds
Speaker 2 1:06:07
it exactly. It's just, you know, what
Scott Benner 1:06:10
did you do with that study? What? What did you learn about it? So,
Samantha Arceneaux 1:06:15
so basically, I went in and I wasn't quite sure, you know how it worked. I just heard, you know, the the results from the adults were really, really positive. It was showing that there's lower glycemic variability for the people who had gotten the real thing versus the placebo. They were using less insulin, lower a, 1c, when I talked to Dr Fauci, it was very much like we are teaching white blood cells to basically eat sugar, instead of needing the beta cells to do that job. So therefore, it avoids autoimmune, you know, that autoimmune response, because it's not the beta cells being attacked. It's just, you know, kind of like a workaround. So more of a functional, I won't say the cure word, but, you know, a functional treatment in order to not have the same amount of insulin needs. So it's really fascinating, and it's all from the BCG vaccine, which has been, you know, given to billions of people around the world. So then the next question is, you know, well, why aren't, you know, people preventing diabetes, then, if they're getting these vaccines, but it's a very specific dose, a very specific strain. But the problem is, it only costs $1 you know, per dose. So what incentive is there for, you know, companies to pick this up, so to speak. Did your daughter do it? So, yeah, she's currently, it's a five year study, so they actually don't tell you if you get the placebo versus the real thing. So we won't know that she is going to Boston and she's, we're, I've been to Boston twice, and we're going back at the end of the month. So it's a really fascinating, fascinating study, the
Scott Benner 1:07:47
process in general, yeah, yeah. I had her on once, and I thought it was interesting. I mean, she's using what the BCG vaccine, tuberculosis, right, right? Yes. I was like, All right, cool, but I haven't really heard anything, and I'm also, I'm a little cynical too, because it's easy to be right. When my kid was first diagnosed, I had the same experience that so many people have, right. Like you, you flip on the news one day, or you jump online and you see that they've cured a mouse of type one diabetes. And you think, that's it. It's over, yeah, five years, right? Yes, until you realize that you know what works on a mouse doesn't work on a person, but you don't know that because you've never been around disease before, is maybe your first time, because your kid just, you just got diagnosed, or whatever. And I remember, I went to my wife like an idiot. I was like, oh my god, I can't believe we're so lucky. Arden was diagnosed with type one diabetes just a year before they're going to cure it, because that's how it felt. And now I refer now you Scott, yeah, and now I refer to that time as, now I realize that these labs need funding, so they all dump their, whatever they have, out into the news. This press release is hoping to get more funding. And now I call that cure season. Really
Samantha Arceneaux 1:08:59
does boil down to you, you know, trying to get your best foot forward in order to get money. This is a study when Michaela was first diagnosed. So she's been diagnosed for 11 years now. This was one of the first studies I had ever heard of where I was like, Oh my gosh, there could be, you know, a cure or something that makes her not have to take insulin. And then it was just like, dragging out so long because of the funding, so they're just now into pediatric trials. The good thing is, it's for people who've been diagnosed for a long time, so we didn't kind of miss the window that so many other studies have, which is recent diagnosis, because she has, well, sailed past that threshold. That was kind of my thought processes, you know, and getting my husband on board, honestly, you know now that I've kind of shared some of this conspiracy, obviously, he's not a huge vaccine proponent, but I was like, Listen, this one has been around over 100 years. You know, it's given to billions of babies, you know, around the world, the most well studied vaccine. So at the very least, she's protected against tuberculosis. My
Scott Benner 1:10:00
kids definitely not getting tuberculosis. Yeah, it's, it's very nice you to support research like that. That's awesome. Yeah, really. And nice of your daughter too, because the travel involved, and
Samantha Arceneaux 1:10:10
yes, the travel has been a little difficult. But, you know, she does want, she actually wants to go into the medical field in the future. She wants to be a nurse practitioner. So this is kind of right on that mindset of very curious, she kind of obviously got that one for me, not my husband. So very curious mind. What should
Scott Benner 1:10:28
we call this episode, Bigfoot aliens and diabetes, something like that? Well,
Samantha Arceneaux 1:10:33
I mean, like I said, you know, how many people can say type one diabetes saved my life and other odd coincidences,
Scott Benner 1:10:39
and other god coincidences. That's great. Yeah and Bigfoot. I'm gonna write at the end, yeah and Bigfoot? Yeah, that's awesome. I'm enjoying talking to you so much. We're gonna see each other soon, right? Yes, we
Samantha Arceneaux 1:10:49
will touch by type. One has their annual conference next month in September here in Orlando, so as usual, you're one of our highlighted speakers.
Scott Benner 1:10:58
It's gonna be fun. I got told to stop talking about it, because, I guess they sold there
Samantha Arceneaux 1:11:02
is the registration is closed. Yes, we're over 500 500 registered. It's
Scott Benner 1:11:07
free, but, like, at the same time, but at the same time, like, you have to register, you know, to do it. And I was like, you know, I mean touch by type, one buys ads on the podcast, and so in the ads for a while. I was like, hey, like, you know, I'm going to be speaking with this thing. Like, go do it. And I got a note one day from somebody, and they were like, Stop, yes, yes,
Samantha Arceneaux 1:11:25
no, we are fully, you know, we have, we do have a wait list. But even the wait list is kind of lengthy at this point, so, and it's at a beautiful, beautiful conference center, the JW Marriott, here in Orlando. So you know, if I was looking for a conference that would be a fun day for me. Well,
Scott Benner 1:11:44
I'll go out on a limb here and say a thing that it may be six months from now when this comes out, people will be like, I wonder if that's really going to happen. And I don't really know for sure, but Elizabeth and I have been talking about touch by type one setting up me speaking at other places in the country. So I have
Speaker 2 1:12:00
heard I've had, they've been talking about that, yes.
Scott Benner 1:12:05
So hopefully she and I had a conversation. She's like, I could facilitate that. I was like, really? And I was like, Cool. I was like, I don't want to charge people like, you know, like, how do we do this? So she's looking into it, and I was really excited. So I think she's trying to get one in, like, the first one in Philadelphia, maybe.
Samantha Arceneaux 1:12:20
Okay, I know they were trying to, like, figure out where good places might be. So yeah, and I believe there was, did you put a poll on one time recently
Scott Benner 1:12:31
to give her cities to look at? Yes, I
Unknown Speaker 1:12:36
did see that that
Scott Benner 1:12:37
was really cool. Like, it's very good for your ego when you're like, where should I go? And like, you know, you come back a day later, and there's just 1000s of responses like, Oh, it's so nice. Yeah, it looks like Philly, because I can drive to it and, you know, as a test, as a testing and she actually said to me, like, she's like, Could you speak at the Kimmel center? And I was like, Could I I'm like, I'm gonna have somebody mention that at my funeral if that happens. I was like,
Speaker 2 1:13:00
I'm not familiar with Philly, but I'm assuming that's a fairly big center. Yeah, I
Scott Benner 1:13:04
was like, Yes, please. Can we dig my mom up so I can tell her? Well, that's
Samantha Arceneaux 1:13:08
the thing you know. You know at the conference, unfortunately, I am one of the speakers who ends up yearly as someone against your time slot. And I will tell you, it's no fun having to have a time slot opposite you, because you definitely draw the crowd. So I can only imagine, you know, going into a new area, the amount of people that would be, I hope registering to see you. I
Scott Benner 1:13:31
hope so. And also nice of you to tell that story, because when I tell it, I sound like I'm bragging. Actually, there's a short list of people I have that are still angry at me because they flew somewhere to speak, and their slot got put against mine, and then like three people went into their room to listen to them talk. Yeah, like
Samantha Arceneaux 1:13:48
you thankfully, you know I'm my ego is not going to be hurt. You know, I'm there, regardless of whether I'm speaking or not. So, yeah,
Scott Benner 1:13:58
well, other people's egos have been hurt, and they've spent a lifetime trying to me because of it. So, oh no, yeah, those people are not pleasant. That's a different story. Thank you for doing this. This was terrific. I don't know I should have you on more often. You're very natural at this.
Samantha Arceneaux 1:14:12
Thank you. Yeah. I mean, I think we've been trying to schedule this since last conference, September of 2023 and right now, as we're recording. It's August 2024 so you're a busy, busy man.
Scott Benner 1:14:24
Well, no, also your family is very busy digging a tunnel from Orlando to Cuba. It takes a lot of
Speaker 2 1:14:30
time. Oh man, let me tell you, it wouldn't be Cuba. I'll tell you that I
Scott Benner 1:14:35
would love to interview your husband. I'd be like, tell me what's gonna happen when they come for us, and just let him talk.
Samantha Arceneaux 1:14:39
Oh man, he's, yeah, I won't say he's off the deep end, because, you know, I do spend a lot of time reeling him back in too. But I will say it has been very difficult with the amount of fake news and in the media or online to kind of like, go through that mental, analytical process with him. Of like, is. Do you really believe this, or is this something someone is posting? Because anybody can post anything versus, you know, like, you gotta, like, use your brain and just don't look at something and take it at face value.
Scott Benner 1:15:11
I watched the thing happen to one of my kids the other day. I don't even want to say which one, right? They have a certain a political belief, and came and said something to me. I said, Oh, that sounds weird, like that doesn't sound quite right. I spent a little time to like I dug in and around it, and what I found out was, is that the thing they heard about another person. So just imagine there are three people in this conversation. They heard a thing about the second person that was designed to make the second person look bad. And it turned out that the third person floated that story to make the first person look stupid for believing it. And like, once you, like, realize that that's the level of like, shithead chest that's going on, right? I was like, see, you believed a thing that is not true. Yeah. And if I gave you a day to figure out why someone made up that lie, you would not have come up with the actual answer. Like your brain would have started going, Oh, it's probably because of this and this and this. But it wasn't. It was for a completely different reason that you would have no way to understand. It's really fast.
Samantha Arceneaux 1:16:21
That's just it. You know, one of my things is, you know, not only do I have the clinical psychology degree, I also have a degree in marketing and sales. Because apparently, that's what I did, was just go to college for a bunch of random things. So, you know, in marketing, that's, that's like, the the 101, you have to capture their attention. You have to, like, really, if you're not selling something, you have to dissuade people from buying the other product, right, put down in their mind. And it kind of rolls with that psychology. But you know, media has figured out that you just have to post it and have someone believe it and have that word of mouth spread, because those people who read it aren't going back to look to see that there's a correction or that something has been modified? Yeah? They just go with it, and it's like, yeah, rolling with it. The advent
Scott Benner 1:17:07
of social media taught people who are in the business of changing hearts and minds for whatever reason. It taught them, I don't have to get everybody, I just need a percentage, yes, and that's it, that's and the truth is, is that, like, there's also ways to think about that that aren't devious and terrible, like, I'm a very successful podcast in a very small niche, and that is why, because everyone who listens has type one diabetes or loves somebody with type one diabetes. So if you're selling a pump or a glucose monitor or something like that. The people listening to me are almost 100% a possible, you know, customer I'm a good bet to buy an ad with. And that idea is the same as what you just said, like, we'll just blurt this out to 30 million people. We only need, like, a million of them to believe it, and then, you know, we've got enough of them to capture the space. And now, at least the the idea is out there enough that even if it's not true, it still seeds doubt in people's minds. I heard a thing like the GE light bulb thing. I heard it like when I grew up, that was a fact, and as an adult, I was like, that's weird. I wonder if that really happened. And I looked into it a number of times like that, that as far as anybody can tell, that didn't actually happen.
Samantha Arceneaux 1:18:26
Well, that's what. I don't know if you've seen this meme, but it's like, you know, what did you do before the internet? How did you find out things? And it's like, Oh, your aunt Kathy told you something, and you believed it for 20 years, like there was no fact checking.
Scott Benner 1:18:38
And now think back on Kathy. She's a crackpot. So, like, I mean, listen, you're like, there's something in the dirt and one like, and you might be right, and you also might be completely wrong. Like, it's, you know what I mean, like it, but in 1975 if you said it out loud, it was true, Yep,
Samantha Arceneaux 1:18:57
that was absolutely but they also smoked in restaurants and all kinds of crazy other things that we know better,
Scott Benner 1:19:02
My God, my dad and smoking in restaurants, just my whole life. All right, I got a role. Thank you so much for doing this. Absolutely. It was great. Talking to you, fantastic. Talking to you too. I'll
Unknown Speaker 1:19:13
see you soon. Okay, sounds great. Thanks.
Scott Benner 1:19:15
Hold on one second.
You a huge thanks to touched by type one for sponsoring this episode of The Juicebox podcast. Check them out on their website, touched by type one.org or on Facebook and Instagram. Today, we heard from Leo, who will be participating in her own blue balloon challenge. Follow at Medtronic diabetes on Instagram and use the hashtag blue balloon challenge on social to see inspiring videos from Leah Aaron and other people living with diabetes, and you can join the challenge yourself or with your support squad to show how you're keeping your balloon in the air on top of everything else in life, are you starting to see? Patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.
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