What Every Patient of a Chronic Condition Needs to Know

Introduction to SIBO and Chronic Illness 0:00

Welcome, everyone, to the Michael Jackson and Chronic Illness Summit. I'm Doctor Christine Schaffner, and in here with my dear friend Shivan Sarna and we're going to be talking about her journey and all that she's learned, starting with really the journey of Sibo. That's how many of you know her. She's an amazing following, an amazing presence, and she's done so much to educate this community. So welcome Shivan. It's always so fun to connect with you. I'm so glad to talk to you too, doctor. Thank you so much for having me.

Let's talk mycotoxins and chronic stuff. I'm so happy that you're doing this because so many people are so frustrated and we're on this hamster wheel and we need help. And for anyone who's wondering like, what is Sibo? I think I kind of heard of it. It's small intestine bacterial overgrowth, which will, lead often to bloating, constipation, diarrhea, alternating consultation, diarrhea, rosacea, restless leg, weird ferritin levels. Let's see what else B12 imbalances is. Can be caused from food poisoning.

First and foremost, thanks, Doctor Marc Pimentel at Cedars-Sinai in Los Angeles for making that discovery and connection. And, it also can be caused from things like endometriosis, scleroderma, adhesions, from like abdominal surgery, appendicitis, caesareans injuries, like the tennis ball hits you in the gut and you're like, oh, oh, I'm fine. Not we're not. I mean, I'm fine, but your body freaks out and makes all these, collagen scar tissue internally. And, basically, I've had it since I was five because I went to India with my parents.

They are importers and all these pretty things in the background. Indian. And I'm half Irish. And, my mother and father met in New York City. And there's this beautiful business called The Bells of Sana. Together, which is very famous. If you were back then and a hippie and pre that and they sold literally doctor, millions of bells like that was the thing. I should have a bell right there. Yeah. These brass bells that were hand tooled and, you know, he was on the In Life magazine on the Dinah Shore Show and all these great things from the.

It's so cool, so cool. So we go and I'm five and I get food poisoning. Very sick. But, you know, okay, eventually then I, we go back to New York City, where I grew up, and I go on a field trip to upstate New York, and we're at a farm, and we're milking cows. And the teacher looks away at me and a couple of other kids, like, take a sip of the milk. That's, like, fresh out of the bucket. Sick, sick, sick. I was so sick. And then my father, who is the Indian, from India, he would ask my mom, like, you should, I'm going to the bathroom every day.

Like basically bowel movement number two, whatever you want to call it. And my mom was like asked me, even though I knew she knew whatever, you know, it was like this first moment of a body function and shame. And I was probably seven,

Shivan Sarnau2019s Early Digestive History 3:04

and bloated. We used to call it the Buddha belly. I'm sorry, Buddha, and you know, it was just this, this thing where I had this bloating even as a child. Fast forward, when I was in college at the University of Florida, I literally lived in a sorority house towards the end, and I had only to pay half of my sorority house food bill because I was doing food combining. Right, like old school Harvey Diamond, nutritional hygiene, where you don't mix your carbs with your protein because of the enzymes.

This is, you know, back in the 80s, very advanced stuff that I ate like none of the food. And I would walk around the University of Florida campus with a gallon of distilled water. Like, I was such a geek nerd. I feel well, right. So here I am in my, you know, teens doing this. So it's been a long journey. But I then started working in a television studio that had mold in it and worked there for 20 years and was in deep, deep denial about, how I was feeling and didn't know what Ciba was or anything.

Finally went to a doctor in 2015 and, he, you know, said, oh, you have IBS. And I was like, okay, what's that? He's like, run three miles, we call him doctor run three miles in my book healing CMO because, he also gave me an answer depressant. And I was like, I'm so confused. You know, it was very stressful. And I finally found a doctor who I call the digestion detective, Doctor Michael Schulman in Largo, Florida, who spent two hours with me. He's like, I really want to see this Sibo breath test that I made the other doctor give me.

And someone had written the word negative. No, no. So whatever in the word positive scratched it out and wrote the word negative on this test. And Doctor Shulman was like, I really want to see the graph. But I was scared, Christine, I didn't want to call that doctor's office and reveal that I'd switched doctors and inconvenience the nurse at the front desk, even though that's her job. It was very like weird mindset for me. It was just like, I think sometimes patients with chronic conditions speaking for myself, we tend to not tend to.

We can on occasion. I hope this never happens to anybody but be like, if I do that, what else do I need to do? There's going to open up a can of worms and I'm already tired and cranky. So write the mold test for your, and that's that's where that one comes in a lot. Right? Right. I'm the hassle. What does that mean? Am I going to have to rip out all the drywall? I mean, and on and on. So anyway, I did the other breath test and a Sibo breath test, and of course I was positive I finally got treated and, then I finally took a, IBS smart test because doctor Mark come and tell us who, like, I'm a fan girl for, you persecuted community so many times.

He developed a blood test to tell if you had antibodies from food poisoning, which was calling, causing the slow motility of the small intestine, leading to, an overgrowth of bacteria there. And then that overgrowth of bacteria, ferments your food, and it releases gases. Hydrogen, hydrogen sulfide or methane. And that's what leads to Sibo, which more and more people are doing studies on, which is so cool. And they're finding also this connection with dementia, alcoholism. I mean, all of these like, wow, that makes total sense.

I think there's going to be some stuff about fatty liver that comes out and on and on. So, I in this working situation where I, you know, really wasn't resolving the Sibo because I didn't, didn't want to take a pro kinetic, which is what moves that, small intestines motility. Because I was resistant, because I was scared. I was like, I don't want to take another drug. Now, that pro kinetic, which is called, Motec gritty, which is now available in the United States. I was previously living in, in Canada, but prior to that, I literally had it in my house and didn't take it home.

Mold, Lyme, and Getting the Right Diagnoses 7:11

And right, I was scared. Fear. It was just like fear of the unknown. I already am so uncomfortable. What's going to happen to me if I become more uncomfortable? How much more incapacitated am I going to be? And yet, when I finally did understand it a little bit more, which always increases my compliance, which I want to inspire you all to continue to listen to these presentations over and over again and read the transcripts, search the transcripts, get the summit so you have it as a resource, because the more we understand, the more compliant I see people be.

And our 22,000 person Facebook group, I see it all the time. So I understood maturity more Russell or pain in the butt to get it from Canada at the time. It's down in the US. All of these obstacles. I finally got through it and I'm like, oh my gosh, this rocks. There is hope, I am better. This is amazing. Like my whole thing for Cibo, S.O.S and my company, which is called Chronic Condition Rescue, because I had all these chronic conditions, including alopecia, which is hair loss. I mean, things I don't even know existed, like, you know, the mold and the Lyme and all that.

Because a managed chronic condition can make you feel 100% better than a neglected, untreated, chronic condition. I know you must see that with your patients all the time. So many good pearls here. And I really appreciate you sharing your story. And I know so many people who are listening can relate. And you know I think you make a good great point because you know my, my lens is always like okay, let's look at the root cause let's, you know, try to really heal on a deep level. But that can take time, right?

You know, and what struck me was your story. And as I listen to, you know, and these stories all the time is like your illness was ahead of our understanding of it. Right? And so, you know, like, it took you decades, right, to really, you know, understand what was going on from that trip in India as a young girl, like you didn't really setting up the whole, you know, health of your life in a lot of ways. And so, I think you make a great point. Like a lot of times we, we might not completely understand what our patients are going through, but there's a lot we can do to help, you know, support the body's ability to regulate, to make you more comfortable.

You know, and so I think you're really inspiring people, like, if they're resistant to looking at certain things like, do it, you know, that there's going to only be, you know, potential on progress and, you know, feeling better in that journey. So, no, I, I really appreciate you sharing that. And also don't have any shame if you can avoid it around having a condition and not doing anything about it, like, oh, I should be doing this, maybe you're just not ready. And there could be a million reasons for that, right?

So having the knowledge is really powerful having that data. I have never been more surprised than when I was relieved to get a diagnosis. Like, who wants to get a diagnosis? Who was relieved by that? But oh, I'm not crazy, right? Oh, okay. Wait a minute. When they pulled the the the so so I knew there was mold in the building. I'd been learning about mold. I was like, oh, but I'm fine. This is all, you know, I don't even know what I was thinking. And, I wasn't as well as I could be, and I and I had terrible brain fog and I my CRP, which is a indication of inflammation, was as if I had a broken leg wound.

It was that and but I did not have a broken leg. And finally I went and it was very inconvenient and very expensive to go to this one functional doctor in my area in Florida. She was the only person I could find that did the test. And whatever I just wanted to test. But they had to do like an intake and and I didn't want to stick with that doctor because I was doing work with other people. But I want it's a whole thing, right? It's a whole thing, guys. You know, it's it's. So anyway, they pull the Q-Tip out of my nose for the mycotoxins, mold test.

And there's a little bit of black on the tip, and I'm like, that's weird. That must just be dried blood. And of course, I get the report back, and it's like, Masud, you know, all this horrible through the roof mold business and, you know, then, like, what are you going to do about it? Right? Like, okay, well, all right, there's a relief because I think the truth sets us free. But, you know, there's also a lot of DIY involved. There's a lot of money involved. And, when I finally did really confirm that, you know, in my being and, like, acknowledged.

Yes, Shannon, you have mold toxicity. And it all started clicking into place, like, okay. And I remember that DNA connections test I did with doctor Tom messenger when he really, like, was trying to talk me into getting that DNA test, connection to test for Lyme. And I had just interviewed him for two hours about it, and I still was like, I don't I don't know, I don't know, but I we went for a walk in the woods was my first time to Portland, Oregon. And it was this I was taping the summit for CBS West Summit one the first time, and, we were we were staying at this Airbnb, and it was on a llama farm.

I mean, it was like crazy beautiful out of the movies. And so we he's lovely. I love I love him very much. And we went for a walk on the property. And I said to him just casually, you know, you know, Tom, my feet really hurt a lot. And he's like, oh, the spirit kids love to hang out there. And I just like, throw my arms up. I'm like, okay, fine, I'm going to do that. And sure enough, right, it came back live. You know, that I had all this stuff and never had a bull's eye. But I remember summer camp.

Most treasured, wonderful memories. I had such a beautiful time in North Carolina. Girls. Summer camp from the ages of five through 15.

Managing Overwhelm and Building a Care Plan 13:02

I mean, blessed, blessed experiences there. But one summer, I got the flu in the middle of summer camp, and I remember being in the infirmary and it was like, you know, it's the middle of summer. No one else has the flu. What am I doing here? Right? But there it was. And I'm like, I know. That's when I got Lyme. In retrospect, I know it. That was that tick bite. And, it just the things started kind of falling into place. And Mike Niall eroded because I'm like, okay, come on, the information's here.

It's not going to be as hard. You don't have to rely on Doctor Google any more people. This is the other thing I was before I even met you or anybody in this space, before I ever did. My first online summit back in 2017. Started to work on it in 2016. I was just sit there and stare at my computer and like, be with Doctor Google. And I'd be like, okay, it's a big world. I know there must be people who know about this. I refuse to believe that there are people out there who are not also experiencing this, who are in a vacuum.

I don't think it's mainstream. And, I have to find them. And that's really what started this whole journey for me. And now I'm going to be going on my 10th summit this year and my beautiful, sweet book healing Sibo. Thanks for those great reviews and random House for publishing it. You know, it's been a great journey, but I want to inspire everybody that there is hope, there are answers, and you being here at the summit is a perfect way to really illustrate that and to prove it. And, thank you, Sharon.

And yeah, like, you know, the silver lining right in this like, really hard journey that you've been able to educate and have so many and connect with all these wonderful experts and, you know, your story is really very much what I see in my office every day, right? It's not this one, you know, event, even though you, you know, I have the Santa Clara event in childhood, but it's this combination of things, right from the, you know, Sibo to the micro talks and exposure with the mold illness and then Lyme and co-infections.

And so, you know, that can really be empowering, but sometimes overwhelming for people that are like, I got all this stuff, like, where do I even start, you know? So maybe just some words of wisdom from your experience, like, for the listeners out there, like, how do you how did you prioritize or how did you find a way to like, deal with all of this information? And it is very overwhelming and so I kept a question journal, and that was just a notebook, like, because I had my mind races and like, what about this?

What about this? What about this? And then as I went through and learned things like I would check the stuff off. So that helped me mentally. And also when you're watching a summit, you're like, what do they call it? Like second year medical student? Like, you have everything I like. Everyone's a hypochondriac. Yeah, right. Exactly. So I kept this running question log that has really helped that I teach people to do because it is overwhelming. I tracked all of my labs and tried to be super organized about my lab testing, because that is hard, right?

And so if you are lucky enough to work with someone like Doctor Schaffner, then she's organizing all of that for you, and that's part of her services. Right? So but for if you haven't had a chance or you don't have a provider and you're, you know, piece mailing it, I do encourage everyone to work with a provider, a skilled professional, but do as much as you can yourself because it's going to save you time, energy and money. And, and then use that provider as an advocate and a team member with you.

If you're so far gone that you're like, John, that is a great idea. I can barely get out of it. That's fine. Then just show up, do your appointments, follow the plan. But I, I really want to encourage people to try to be as organized as possible, and try to, take really good care of themselves and be gentle with themselves, which is easier said than done. And to use the shame and judgment that we have around ourselves for not doing something better sooner. Even if you have all the information and you're not acting on it, that's a whole nother ball of wax, right?

Like, what does that mean? If I do find the answer my I remember meeting doctor C back or online and, as a Sibo specialist and having telemedicine, which I thought was totally poopoo, and I realized that not everyone has licenses and all the states and all that. And so that's not an answer for everyone. But I thought, how can someone help me on a zoom call? Yeah, I wasn't even zoom back then. I was like, I don't even know what it was. And, the thing is, is that one hour with a person who really knows what they're doing is worth ten with someone who's guessing.

Yeah. And so find that provider, get as much information to them as possible, download it into their portal, and don't have expectations that you're going to talk to them via email like every other week, because that's not going to happen. I mean, some people have packages like that, but I see a lot of people in the Facebook group pissed off, irritated because, well, I emailed their office and they didn't get back to me. In this world of blended boundaries, I never, ever had an expectation of talking to my PCP or, you know, primary care physician or any doctor in between visits.

So if you that is going to bother you get that expectation upfront like hey what, what about you know, when can I talk to you again. Well at our next appointment okay. Well what I would do is I would look at like I had like four appointments lined up because I had so many questions. I knew there was a reduction of my stress knowing that, well, my next appointments in four weeks. Here's my list by the time I get there. Maybe some of these questions are to be answered, but I have a target of when this knowledge gap is going to be fulfilled and versus floundering and, you know, being like, oh, this is never going to get better.

The last thing I just want to say has to do with language. And the other day we were in what I call a tea cozy because I'm not a medical professional, I'm a patient advocate and I'm not a health coach, and I don't want to be a health coach. I do want to help people, though, and I have through all this work. But we had something. It was basically a brainstorming session. So I just went into my Facebook, group for the people that joined our course, see the recovery roadmap. And we brainstormed like they were telling me about the case.

I was like, this isn't medical advice, but this is what I would do. Or just look into this or, hey, have you thought about this or have you talked to this person?

Roadblocks, Support Systems, and Mindset 19:38

And I had this lovely woman and she was like this. She was like, well, of course I couldn't get Ahold of the doctor. And, you know, and then inevitably, they never called me back. And of course, the antibiotics didn't work, and I was just like this foregone conclusion of, like, fatalistic unhappiness. And I just thought, wow, I get that. I have been there. I have so much compassion for you. But let me help you with your language because I don't want you sabotaging yourself and anymore. So take that next right action step.

But watch your language because it really does feed into a victim mentality. And that doesn't help anyone. Yeah. Yeah. No that's really wise. And it can be hard right. When people have been in it for so long and I can get you know, it can be wary. Right. And so part of the, you know, the work is, you know, just, being around people like yourself and reminding you to like, okay, you can have your moment of like, let's shift up, you know, and, you know, trust the time and trust that you're bringing the right resources at the right time.

You know, and really believing in the treatment, you know, I, I think that is absolutely part of the healing journey. And I, I see that within my own, you know, patients, you know, the people who really are open and and everyone's on their own, you know, in their own part of their journey. But like the people who are really receptive and ready, like it's amazing how quickly they shift. And then, you know, the people working, they just have work to do. But it is it is a big, it is part of the equation.

So I'm so glad you brought that up, Sharon. And, you know, I guess as you look at like at your own journey and like what you've seen in your community, any clinical pearls or insights of, like, roadblocks that you might have had or resistance that you might have had throughout your journey that you want to make people, mindful of so they can be on the lookout for that. So if you are doing a Sibo breath test, make sure you get the graph right, and then you don't just get the positive or negative from that lab and then really like follow through with what can you do to prevent relapse.

Keep the question journal. Obstacles I would say are definitely attitude. Facebook is a mixed bag of these support groups, right. We keep ours very positive. Our motto is be nicer, be gone. And so I think it's great because you can really get support and good information. And on the other hand, if somebody is having a bad day and that feeds your bad day, then it's not supportive. So sometimes you have to take a break. Yeah. Get family enrollment and support. That way if you have passive aggressive narcissistic family members or people in your work environment who are constantly diminishing your situation, they really don't.

In my personal opinion, do not deserve to know of your situation. So, if you have people that haunt you and are energy vampires, I definitely see that as a preoccupation and people that, can be a barrier to healing as well. So true. I think I think Doctor Northrup even wrote a book like Energy Vampires. Right. That, that has been, you know, a light bulb moment for a few people. But you have to conserve your energy, right. And you have to remind yourself with a team who will listen and who will guide you, and people who will uplift you.

So I think that's so. So why shavon? So chevonne, you are always creating the next educational, you know, resource to help people on their journey. So I want people to learn all the great ways to connect with you and all the wonderful ways that they can learn from me. Thank you so much. So sibo sos.com/used to mean come save me, but it has come to mean save ourselves very organically that transform so it's, you know, the website sibo SOS. You can get my book healing Sibo. Yeah. It's really like my journey and a protocol on how to address IBS and see what we can.

Sibo is IBS, it's explained there. And then also, we're just depending on when you're listening to this doing the liver gallbladder rescue summit. We're going to be doing the Lymphatic Rescue Summit this year as well. And the fascia rescue summit with our dear friend Kelly Kennedy. Towards fourth quarter. And, if anybody has any dental issues, which has been,

Resources, Summits, and Closing Hope Message 23:58

mind blower that you and I have had so many conversations about. So thank you for that. I also did the Dental Health Connection Summit, which, you know, is very confrontational. To wrap up with that idea, like the amount comes the cavitation is the dentist you grew up with, the pain you experience as a child, and you hate going to the dentist. The flossing trauma where you're, you know, your gums are bleeding, blah, blah, blah. I met Hal Huggins, who was the most controversial dentist in 1986, and I was in Tampa, Florida for one day.

I worked at a PR firm and I did his PR for this one day trip. He was there and and so I learned about the dangers of amalgam fillings, and it changed my life, this one like chance thing. Right. So back in 86, I learned about it. Then fast forward to the 20 2020s. I was lucky enough to do a summit on it, and I thought this was going to like it was very successful, but I thought it was going to be like the biggest thing I ever did, and with it, millions of downloads and all that. But it was it was the people who loved it really got into it and they're like, oh my gosh, this answers so many questions.

But the people who were not into it and were resistant to it were like, you look crazy and so crazy. Yeah. First time I heard about someone with a dental, connection to their health and how her ankle pain went away when she actually had a tooth extracted, I thought she was nuts. Right? But, like, what do you think is nuts right now? Maybe the answer to your future health. Yeah, I love that. Now, the dental piece is the most rewarding work that I do, but I assure you it has to be done with the right team, right support.

And we have so much trauma, you know, in our mouth and from dental work that I can, you know, when people might not be ready to see that or have, unhealed issues around that. I can I can totally understand it. So it can be a Pandora's box as you as a parent, but I'm so grateful you put that, summit on and all the education because it is really, really important. So thank you. Siobhan, is there anything else, on your mind or your heart that you want to share with the audience as we wrap, I want to say that there is hope.

Okay, I know I've said it, but I really want to convey that to you even more. You have a mission on the planet, whether it's to be a great parent or a great teacher, or just get through the day, and resolve your past trauma. Whatever it is, you have a mission. You have a karmic blueprint, and the health plays the body, you know, plays a role as the body is a vessel for your soul. So I really want to encourage you to act with love towards yourself and know that you deserve to be well. Okay, I love them.

I am so glad we ended with that message of hope. And thank you so much for being on the summit, and we'll have all the wonderful ways to connect with you, you know, attached to this recording. So thank you, thank you, thank you, thank you.