Genetics And Pain With Barby Ingle
Imagine battling a rare disease for years, seeing over 40 doctors, and still not getting the right diagnosis—until one powerful moment changed everything. In this powerful episode, we dive deep into the world of chronic pain and rare diseases with
Barby Ingle, a healthcare expert, author, and fierce advocate for patients who have been overlooked by traditional systems. After a life-altering accident that triggered a rare disease, Barby's journey through 42 medical providers and countless misdiagnoses led her to become her own best advocate. Join us as Barby shares her inspiring story, her battle with genetic disorders, and how she's now working with legislators, including RFK Jr., to change the healthcare system for those suffering in silence. She'll also reveal groundbreaking insights on health through genetics, genetic testing, microbiome health, and how we can better address the needs of individuals dealing with chronic pain and rare diseases. Don't miss this eye-opening conversation on the future of healthcare and how we can all advocate for better care.
---
Listen to the podcast here
Genetics And Pain With Barby Ingle
Health Through Genetics
We have a very important episode to talk about pain. Our expert is Barby Ingle, who is an author, healthcare expert, conference speaker, TV talk show guest, and politician. Thank you for inviting us into your life.
---
We have a fantastic episode talking about pain. Everybody deals with that a little bit. Our expert is Barby Ingle. She's a healthcare expert, and she's going to explain to us about pain and genetics. Right now, she's on board. How are you doing, girl?
I'm doing good. I'm so glad to be here with you, John.
It's wonderful to have you as busy as you are. I know you're busy all the time. What I'd like to do is ask you a few questions. First, share with us how you got involved in the healthcare and genetics-associated stuff. Just make that so I can understand it.
Barby's Personal Health Journey & Advocacy
I developed a rare disease after an auto accident. It took about eight seconds for the auto accident. I went to the hospital. They told me everything would be good in a few days. I was going to be sore. I had whiplash, and it turns out that that auto accident triggered a rare disease that I have called algoneurodystrophy. It took me 42 medical providers to get a proper diagnosis.
I went through multiple major surgeries and minor surgeries and really had to learn how to be my own best advocate. Once I was able to advocate for myself, I saw how important it was to advocate for other people even after I got a diagnosis, which took three years and another four years until I got a proper diagnosis because the disease I have, algoneurodystrophy, is actually a rare disease.
Only 5% of rare diseases have a cure. The rest of the time, they're just treating symptoms, which we tend to do a lot in our healthcare system. Learning how to navigate the healthcare system led me to advocate. Now, I'm going into legislation. I've been working on legislation since 2009, but I've actually co-written seven bills. Two of them are already law. Two of them will become laws this year. I'll keep working until we get the system fixed.
Other than what you talked about, please share with us about a specific illness. I talked to you about thyroid issues or diabetes before when we were on the phone. Talk about a specific illness or threat that you've uncovered how this all ties together besides your big thing.
The biggest one for me is algoneurodystrophy, but I also have hypothyroid, also known as Graves' disease, where my thyroid isn't working properly. Your thyroid regulates your heart and your metabolism and signals between the heart and the brain. Basically, your body is part of the brain system. I have that.
I also have PALB2 breast cancer. My father passed away with complications of type 2 diabetes. Hopefully, I have had a different lifestyle in food choices, and I won't have that same suffering that he had. I also know about over 166 different diseases. How it all ties in is that we're each individual. Even if you have the exact same disease, whether it's a common disease or a rare disease, it needs to be treated individually. I had to figure out a way to get the proper treatment.
Doing so, I figured out how to get access to genetic testing. Now, it's even more widely available. Hopefully, it will continue to be so, so that more and more people will have that genetic testing and they can get individualized care that works for them. I have other family members with the same algoneurodystrophy rare disease as myself. We do different treatments. It takes different medications, different physical therapy activities, and that type of thing. Even if you're genetically related, you still need to find out what is right for you as an individual. I actually had to talk to RFK Jr. about individualizing care and how important it is for us.
I think I brought this up. My wife, I think I told you, deals with gluten allergies. She's with a functional doctor. She was going to try to do this interview, but she actually got a cold, believe it or not. I really wanted to introduce her to you. We'll do that in the future. On the gluten, I don't know how many people, but it's crazy how many people deal with gluten allergies. I'm sure you're aware of that. This genetic testing, have you found any that can help people to deal with gluten?
Genetic Testing & Gluten Sensitivities: Finding Solutions For Food Allergies
Absolutely. When it comes to food, you can do a whole genome sequencing, which would be my top recommendation. If you can't afford to do that, I would say do a microbiome test, which looks at your genetics and DNA and compares it to the foods available for you in this world. It will tell you what foods will aggravate your genetic conditions and sensitivities. It can tell you what your superfoods are. It will tell you the things that you can eat once in a while, and then it'll tell you a list of things that you need to avoid.
Taking that information, one of the things that makes it so powerful is that we can use that to improve our daily living, but it also turns it from a subjective, "When I eat wheat, my stomach hurts or my intestines aren't working properly," to something objective that the doctors can't argue with you. When you go to a restaurant, and you're like, "I have a gluten allergy," other people can't argue with you about it and say, "You're just being a picky eater."
You can actually show, "I have this sensitivity or allergy, and I need to absolutely have no contact with onions, gluten, tomatoes," or whatever it is that you shouldn't be having. Having that microbiome test done can specifically tell you what to eat and what not to eat. If you had a whole genome sequencing test, that is one of the pieces of information. Looking at the whole of you, you can fit into the puzzle.
Microbiome testing can help you understand what your body can process based on your genetics and what you individually need.
We're not understanding any of this, and I've been dealing with a woman for years who's had to deal with this. When we go to a restaurant, you know what it's like. We just came back from a trip. We're in restaurants, and she's trying to communicate what she can eat and what she can't eat, and they look at you like you're a little brain-dead. Where would you point people to go to get this kind of test?
If you want just a microbiome test, just looking at your gut health, and I've gone through this test individually before whole genome sequencing was available, you can go to a company called Viome. I don't get paid by them.
I hope you do.
I have sent them a lot of customers because the detailed information was so helpful. I was getting kidney stones multiple times a year, and at some points, I was getting multiple kidney stones at the same time. They say having a kidney stone is like having a baby, except this one, it cuts you all the way out. Changing what I ate based on my microbiome tests from Viome, I was able to slow down my kidney stones to about one a year.
Some years, I haven't had one, but there have been a few years where I have. It slowed it way down, and I'm not having constant chronic kidney issues. I also, secondary to my algoneurodystrophy, I do have gastroparesis. My stomach doesn't process food properly. Food will sit in there for days sometimes. That can lead to molding and fungus growing, make chronic vomiting happen, and make you really sick. I have to watch what I eat and what my body can process, and also remind myself that my body takes longer to process food than the average person.
I've got a daughter and she's had, since sixteen, something like 80 kidney stones.
Yes, microbiome testing.
I really appreciate that. That would be good news for her because it's crazy how hard it is for her to deal with all that. She keeps going to doctors, and they just scratch their heads. They don't know how to stop that.
I had 9 colonoscopies and 8 endoscopies, where they were looking at everything and trying to figure it out. I had one of the providers, I ended up firing him, a medical doctor. He said, "Everything's good. Just don't worry about it."
You don't believe it's happening, right?
He didn't believe. I said, "I know what I'm living with. I know what I'm going through. You cannot tell me that nothing's wrong. With that, I'm going to sit in your waiting room and write a letter to my primary care doctor saying there's nothing wrong with me because I know there's something wrong. That's why I'm here." He took 45 minutes, and they wrote up a letter, and he gave me a sealed envelope and said, "Take this to your primary care doctor." It was sealed. He didn't want me to see my own results. I went to my car, and I opened up the letter.
It had eight diagnoses, including gastroparesis, intestinal ischemia, it was a list of things that were going wrong between my esophagus all the way through to my colon of not getting proper blood flow, and how my stomach was emptying slowly, which is gastroparesis. It doesn't contract like a normal stomach does. I knew something was wrong, but it made him look like a bad doctor because he didn't want me to know that he knew something was wrong also. I fired him.
I got a new doctor. He went in, did biopsies, and confirmed that my small nerve fibers were not firing properly, and it was causing issues throughout. Again, the microbiome testing helped me see what my body can process based on my genetics and what I individually need. It helped me redesign how I eat, whether I'm eating out or eating at home. People can call me a picky eater, but I have proof now. I am able to say, "No, that's not something I can eat. My body can't process that."
It's hard for you to find a restaurant, isn't it?
It is. People say, "Let's go out to dinner." I'm like, "Okay, you pick a restaurant." I go study, not just what's on the menu, but I have to go and look at the ingredients. When I get there, I confirm, is this in there? Is celery in your soup? Things that would not affect a normal person, but they affect my body.
My wife's going to love you. I can tell you that already. When I show her this tape, I hope I get to hook her up with you because she wrestles this alligator, not as harshly as you, but she wrestles this alligator that we're talking about, with eating. We just went on a trip. It was all about it. It is amazing that you're actually working with RFK. Tell us a little bit about what that task is for you.
Healthcare Reform
I don't have my official task yet, but I will be working under one of his assistants on a team. I will be talking about and being the voice of chronic pain and rare disease and helping them see the patient side of our healthcare system. Our healthcare system is working as designed very poorly. I'm hoping that we can recreate a health system that works, not just for acute situations and diseases but for chronic diseases, as well as rare diseases, which oftentimes get overlooked. Ninety-five percent of our rare diseases don't have a cure and don't have a viable or progressive treatment that can assist that patient.
We absolutely need to keep focused on that. I will be that patient in the room saying, "Wait, we forgot about this. Wait, that's not how it goes when patients go into the operating room, into the emergency room, or to a doctor's office. This is what's actually happening out there." I will lean on my network of patients, caregivers, providers, and industry leaders to make sure that I'm bringing as much information forward so that they can help redesign and rebuild the system.
It's amazing that you're doing that because I know you're going to get a lot of pushback from some major organizations. However, welcome to life.
I know I've had to walk out of a hospital before because they told me their hospital was too dirty to access my port-a-cath. If you tell me your hospital's too dirty, I have to believe that your hospital's too dirty to treat me. They shouldn't be putting an IV in anybody if their hospital's too dirty for a port-a-cath. It absolutely needs to be addressed, and I'm ready to push back. I am not afraid to walk away from negotiations so everybody can calm down and then come back together and say, "Okay, now let's really fix it."
That's great. You're an exceptional woman.
Thank you.
Empowering Yourself Amidst Global Threats
I have one more question. If you understand what we're all about, I created this idea called the Worldwide Threat. There's a history to it to show people who watch it what threats are and then bring experts on board who can talk about solutions and how to give them peace. My primary question with every guest is, you know what the threat is. We just talk about these threats, even talking about your situation and medical system, and whatever else. I don't even have a clue about all this stuff. What would you say to my audience about having peace during this time?
I'd say hold on to hope. There's a great reason for it, and that's because there's help. We just have to reach out and seek it. You have to look below the surface, scratch, and look down deeper. If you're looking at a clinical trial, see who participated. Do they have the same condition as you, or did they take a random sampling?
Really dig down deep into the science of whatever health condition you are facing and see what's coming down the pipeline. There's a great reason for hope, and I have seen major improvements living with a rare disease and chronic pain myself. I know that we have a lot to do to fix it. It is being worked on, but you are part of the process. Step up and take control of your own individualized care.
You said you fired a doctor. I've done that myself. They look at you funny when you do that. I'll just share this with you. I had a knee replacement. I walked into the office. I met this doctor, and he looked like he just got out of high school. I said, "I want to know what kind of grades you get in college before you start working on me, pal."
He looked at me like, "What?" I said, "I want to know what kind of grades you've got. I don't want some C-grade doc working on me." He was good. He handled it well. He says, "I do about 40 of these a week, about 20 of these a week, and about 10 of these a week." I said, "I guess you'd be okay then." Nobody does that.
You know what they call a doctor who was the last in their class at medical school?
What?
Doctor. Where are you on the spectrum of doctors? How good or bad are you going to be? They need to be open and listen to the patients, especially if they were in the bottom half of the class, because they're still getting that doctor on the wall. They still have their diploma up there, but where were they on the spectrum?
Hold on to hope. There's a good reason for it: there is help. We just have to reach out and seek it.
I think the audience alone would love to know about these tests and these companies. I don't care if they pay you or not. They should pay you.
They should.
You're making a difference. These tests aren't inexpensive. My wife has had a Dunwoody test. Have you ever heard of that? It's a food test. It's a $500 test. It's supposed to tell you what you're allergic to, what you're not allergic to, and all that. The last one she took, they said she wasn't allergic to gluten. We go out, and she eats gluten. She's been sick for three days.
They need to look at your DNA. With Viome, they're testing the DNA in your poop. With whole genome sequencing, it's a cheek swab. They're able to get that information. When doctors tell you, "Let's try the elimination diet," or something like that, all they have to do is look at your DNA and actually see what the reaction is.
When they do all the little pricks on your arm and your back to see what you're allergic to, they're not seeing inflammation in your stomach, your spine, and your brain that occurs when you eat gluten. They're not seeing that. They see a skin reaction. Not all sensitivities, allergies, and diseases will affect your skin when they're affecting you inside. Look at the DNA.
I read a study that doctors know three medications on average very well, and everything else they have to look up. That's incredible to me. If they're a diabetes medical professional, but they go and treat somebody with hypothyroid, they're not in the same realm. They can look it up. What medication do I order for this? They don't know those ins and outs of calcium. Even some calcium has to be taken specifically, like D3 calcium versus regular calcium, so that your body can absorb it correctly. Some have to be taken with folic acid or other things. That's why it's so important to know individually who you are on that genetic level, as to what is affecting you or what will or won't affect you.
I've never heard anybody speak about this like you have. It's an individual DNA thing. Most doctors look at you as just part of the mass. You're a diabetic, therefore, you're the same, but that's not the case based on what you're saying. We really have to punch that hard.
Doctors are taught in medical school that if it sounds like a horse and looks like a horse, stick it out in the pasture. Everybody with this, go out there. This is what you do. You all get the same thing. We'll see who becomes the race horse and who becomes the glue on the shelf. With rare disease patients, with patients that have genetic anomalies, we need to look at them like a zebra. Don't stick me in the pasture with horses. I need something totally different. If you treat me with what I actually need, I will improve and be able to contribute to society. I'm a zebra, not a horse. That's why I got my zebra outfit on here.
My wife calls herself a zebra, too. That's the second time I've heard that. She's a zebra. You're a zebra. You get a zebra shirt on. You need to get on national TV with this shirt, girl. You need to get up there. I'm a zebra, and I'm going to tell you what it's like.
Let me tell you. Yes, for sure.
Thank you. You've been a blessing.
Thank you for doing this. I appreciate it.