013 What to expect during Lyme treatment.

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But you, you know, you just gotta plug yourself into life in every way that you can, even if you're just there physically but you're emotionally checked out. Doing things at regular intervals that are somewhat normal, I think, is a part of a piece of the puzzle.

Yeah, it's funny, I find myself talking talking myself into doing things. Like for instance, I wanted to go jogging, I wanted to go exercise, and so I can, or actually I was gonna go stretch on the back porch. And so I wanted to put my tennis shoes on, and I go to pick up my tennis shoes, and my brain is telling me, you don't have time for this, you can't do this, you don't have enough energy, don't even bother going in the other room and getting socks because you don't have enough energy to bend down and get socks and shoes. And I go through this like, mass amount of internal dialogue because I was in survival for so long. I didn't have a—

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

Every time I get all nervous and I stumble over my words. I've been practicing tai chi, so I'm learning how to breathe and all that and release.

I can see it.

Welcome everybody, today back for the second time we have the Groters. Groters, are you ready to help us put the puzzle pieces of lime into place?

Yes.

All right.

I always like a little giggle that comes after the— it's funny. So don't edit that stuff out because that's funny.

I don't know if you guys listen to the to this episode 12, the first release for the first week was, uh, because I was trying to insert those things and I don't know what I did, but our audio got messed up. It like double looped. It is something technical. I didn't know what happened, and it took me a whole week just to figure out how to fix it. And then re— I had to basically start from scratch. I think I redid that one 3 times.

Yeah, I, I told Heather, I was like I don't know if they realized that the audio blipped here, but I don't have it in my heart to tell them. Aww.

People started telling us, "Hey, something's wrong with your audio." Because it kept getting worse.

Like, I did it once and there was one blip, and then I redid it again and then there was 3 blips, and the next time I'm like, "Oh, man." It took us like 15—

took him 15 hours to edit that episode where like, ah, but I learned a lot.

I won't make those mistakes.

I appreciated the episode even, even with the blips. I was, I was picking up on—

he powered through. He's in the sauna and just powering through.

I'm like, I'm, I'm gonna finish this one. I got it. I'm following what, what the conversation is about.

Goodness.

And, you know, I think surgery is, uh, underrated, the impact that it has on the body.

Um, yeah, it's traumatic.

It's very traumatic. Yeah. The book you, you mentioned, um, you didn't necessarily recommend it to me, but I, I, you mentioned it and I, I wanted to read it, was that The Pain Chronicles?

Oh yeah, what'd you think?

Well, what jumps out to my mind is, you know, surgery before anesthesia, you know?

Yeah.

And how crazy that was and just sounds. But I think we would do ourselves well in today's world to make our decision about surgery as if we weren't gonna have anesthesia. So in other words, only do it if you really, really, really need it or want it terribly, you know?

Yeah, willing to go through.

Yeah, willing to go through it even if you didn't have anesthesia. Okay, then the answer is probably you should go forward.

Yeah, yeah, that's a, that's a great point. I like that.

I love, I love that book. She actually— I have, I've tried not to talk about it a lot because she is going to come on our show.

Great.

Yeah, but I loved how she just talked about like the different backgrounds people bring to their pain. Yes, that was fascinating to me.

Yep. Yeah, what you believe about it, especially if you believe that it's a punishment for doing something wrong, that looks very differently than if, you know, than if you treat it as something like, uh, God's entrusting you with this, um, and he's growing you to be a stronger person Um, that's a different way of— different perspective.

Yeah, it is.

Yeah, to make it easier or much harder to get out of bed in the morning.

I can't imagine dealing with this if you're holding on to— like, there's so much guilt involved anyways, or there was for— is for me as things are falling apart. But if you thought that you deserved it, or you— like, I've had somebody tell me, I didn't think I deserved to get better. And I was like, uh, I can't imagine, like, that would just be another burden to bear.

Yeah, it was interesting. Kind of on a separate note, they were saying at the— at this conference we attended that most of the, the Type A personalities were the ones that were actually getting healed. And I thought, that's really interesting because they're the ones that are willing to keep going. You know, entrepreneur kind of type person that keeps going in the face of, you know, where they just have that faith, that drive to keep going. Not that it means that someone without a Type A can't get better, but it was interesting.

Type A is highly motivated.

You're looking for trends. I've actually had a lot of guilt around being Type A because I thought that's what got me into this mess in the first place.

Yeah. Yeah. And Heather, you're not a type A, are you?

No, I'm the whatever, it's all good, where's the party?

Yeah, I honestly— and what goes through my mind from the very get-go on any topic is if I don't do this, nobody else will. Yeah, so then, then that's how— or I guess I'm getting healed from that rapidly, you know, when you can't move. And then you start seeing that you're not so important after all. Not in that way.

Well, I guess we do have an interview to do, right? I mean, I figure we're probably going to use— I was thinking some of those topics are really good. I might edit around them. Just do them as an intro because I really feel like these are so helpful even for us to hear you guys talk back and forth. I feel like even there's a lot of people out there that will benefit just from these back and forth chats. And that's the thing, you know, that we have— we haven't got a lot of response, but we do get some, and they really say the back and forth between you and, and, and people with Lyme stories is really helpful and, and really enjoyable. It's I think it's affirming to people to know that there's others out there that are struggling the same way.

Less lonely.

Yeah.

Yeah, for sure.

And Lyme is a very isolating disease. It even within your— like, Sarah would be isolated from all of us and we're right next to her. So if this helps, great. We're gonna just keep doing whatever helps, you know.

Yeah, there's a Netflix Do you guys have Netflix?

Mm-hmm.

Okay. There's— you have access to Netflix?

Now and again.

Not in our house.

There's a documentary called Vitality where they talk through Eastern and Western medicine and, and they interview a physician and he says the problem— he said we had 10 to 15 minutes with a patient, but he said the bigger problem is that everybody wants a quick fix or a pill. He said like your health, going to the doctor is just a small percentage of it. Like maybe 10% of your overall health plan. He said Americans are very good at saying, oh, not taking responsibility for their health and then blaming the doctor because the pill didn't fix it. He says, yeah, but we don't have influence over all this, the other 90% of stuff that you're not dealing with. I'm like, yeah, that's true.

How much you're choosing to sleep, how much you're choosing to practice and exercise forgiveness in your life. And, you know, if you walk around— and I knew this was happening, this is way before I got sick, years before I got sick— but I just looked at Heather and I said, I'm having an issue here because I can sit down in a room and within 30 seconds I can tell you what's wrong with everybody in the room. And if you find yourself in that position, um, rest assured you've got some improvements to make. And, um, so now when I sit down in a room, it's a lot different. I'm better. I'm healed from that. I, you know, but I've got some other things to do now. I sit down in the room and I see in everybody, I see what needs to be healed. Yeah. As opposed to what's wrong with them. So it comes from a place of compassion. But I'd love to get to the place where I sit down and look around the room and in 20 seconds or less can see that everybody is, um, loved and lovable, you know. Yeah. So, and I think, you know, part, part of what I'm, I'm hoping to, to, to cover today in our chat is, um, when you do some of these protocols and don't feel like they're helping Then what do you do? And then one of the questions I've been wrestling with over the last couple of months is, can I trust my body? And you hear a lot about that. Can I trust my body? Can I trust my body? And yeah, you should listen to your body. That's a common phrase. And it gets a little bit tricky because, um, Lyme body in the morning tells you, um, something's massively wrong. Um, you should stay in bed. And let us try to heal. And of course, that's not the way to healing. So you have to overwrite what you're feeling. So in that particular case, you really can't trust your body or just listen to your body. Or in the case where you have an effective treatment and you're getting an inflammatory response because of it, you can't really trust your body in that regard either. The first round of parasite treatments that I went through Yeah, that sounded intense. My face swelled up like Will Smith in the movie Hitch after he was shellfish. And I just looked at Heather and I said, well, oh no. Oh no. And then I ran into my kids and I said to my kids, I was like, look at this. Do you see anything wrong? And they're just like, Yeah, that's awesome. But, you know, after sitting down and trying to joke it off a little bit and realizing that I'm not going to work that day, you know, then, then just saying, okay, is this an allergy response to the medication or is this an inflammatory response from die-off? Yeah, the self-call that it was an inflammatory response from die-off. I didn't call the doctor. I just kept pushing forward for another 10 days. The swelling and the puffiness went down, and I got improvement in symptoms, a lot of improvement in symptoms. And, um, so I shared that with the doctor later. I was like, yeah, you know, this is what happened. He goes, well, I'm really glad you pushed through it, because if you would have asked anybody professionally about this, they would stop.

I know.

So what do you trust and how do you trust? And I think it looks different every time. Sometimes pain is telling you you're doing it wrong, and sometimes pain is telling you you're doing it right. And that's where you guys have said this so many times: educate yourself. You've got to do whatever it takes to educate yourself. And if you're not into reading, maybe you're into listening to discussions like you guys host, or maybe you're into listening to Audible or whatever. But without knowing, you know, having some education on this, you get mixed messages from your own body and mixed messages from everything else, you know, on top of that.

I know.

That's when it helps to be Type A.

Right.

Yeah.

Because you can force yourself through some of that stuff.

You know, but in that particular case, I was having swelling everywhere, but I wasn't having any trouble breathing. So I kind of came to the conclusion that, hey, if this was really an allergic response, I would have, you know, trouble breathing, and I didn't have any of that. So just kept going forward.

Hi folks, I wanted to tell you about Audible. Sarah and I love Audible. We use it to listen to all the books. I'm an auditory learner, so I love to just listen. I get distracted too easily when I'm just sitting there reading. There's too much going on in my life anyway, what with the podcast and full-time work and all the other things that life throws at you. Basically, the only time you have is in your commute. So all these books that Sarah has been telling me, you got to read this book, I just do it on my commute, and I can do it while I do my chores. So I don't feel like I'm wasting time reading a book. I can multitask and get my chores done or my work and listen to Audible. If you want to get this offer, all you gotta do is go to lionvoice.com, look for the button on the right-hand side, it'll say get your free Audible download. Once you sign up through Audible, you will get your first month free, your first download free, and after that you get billed monthly. And, and you know, there's a lot of times where I'm counting down the days, you know, money's a little too tight, can't spend another $20 on a book. But at the end of every month, you get one free credit and you can use it for whatever book you want. So hope you guys enjoy Audible as much as Sarah and I did. Thanks for helping support Lion Voice.

That's the whole— one of the things I've been chewing on is, and I've told Aaron, is I watched this documentary called How to Survive a Plague about the AIDS epidemic in the '80s. Fascinating. You guys would love it because you'd be like, oh, that's exactly our story without the internet, because they didn't have the internet. So they were talking about creating their own libraries and researching and doing all this stuff. And I told Aaron, I said, I think part of my whole recovery process is I understood years into it that if I didn't figure out what was going on with me, nobody was going to, or at least that's what I felt. Because I would go into the doctor and if they believed me, if they understood me, you know, I just realized my quality of life is completely dependent on what I learn and how I apply it. But even by the time I kind of got to that point, I was past the point of being able to physically do so much.

Yeah. Um, yeah, in a sense it was a little too, too late.

It was for me because I just went downhill really fast. But I, I, because I had to become my own dietitian, because I had to become my own physician, when it wasn't working, I told him, I said, I feel like I only have myself to blame, which is horrible. I know that's not true logically, but like emotionally, that's what I lived with for so many years.

Yeah, I must not be doing enough then, or I'm Yeah, right.

Or if you mess up one day, or you— oh, I should have known I needed to rest. I should have known that I shouldn't have scheduled two meetings back to back. I should have known all these things that you can never foreknow because you can't trust your body. Yeah, I— we just sent out an email to a friend of mine who's a psychologist, a Christian psychologist, and I'm hoping we're gonna have her on just to talk about the whole trauma, isolation stuff. Um, because to me, I feel like it— that's what I've been going through the last 2 years is like—

yeah. And it was interesting, another part of this conference that was— that stuck out to me, they all address spiritual stuff. They, they, they would say you have to go to your spiritual and address your spirituality first to God, to the universe, to who— yeah, that was really interesting and it stood out that even dealing with Lyme— I've said it before, but you really have to become a bigger person. You have to address the spiritual side of it and how that has affected you. And even like, uh, what Sarah was saying with the psychologist, you know, it is so important. And we're excited to have her on. She does a book called, um, Soul Healing. And we have just referenced that book for months and months going through this, just how that has really been an influence on us. And I guess I never clicked in my head how close the spiritual side has to come in order for us to heal, how much a part it plays into it, which is sad coming from a conservative Christian that I didn't realize that, you know.

This is similar to being able to trust your body, is you can interpret different things that seem straightforward in scripture or in just practice. And, you know, one of them is, you know, God gave you this challenge. And while that— I get that, and that can be healthy in some perspectives, in some circumstances, but if you're really feeling that God gave you something, then you're feeling also follows that you have to receive it.

Yeah.

And so it— boy, it's really tricky. And I think you got to be able to look at both sides of the perspective, even sometimes at the very same issue, and be like, okay, well, look, I do have this, so it was permitted, it was allowed, right? And given whatever word you want to use. Um, but at the same time, the, the other part of it's true, which is God doesn't want us to be stuck in suffering.

No.

Um, and God does want us to be healed. And so on the surface, there's a paradox. Yeah.

Yeah, I love the verse that says God does not willingly afflict the children of men— of man. And because that was one of my things, I'm like There's a pastor that I follow out in Asia called— his name's Dr. Paul Cho, and he has a book called Suffering: Why Me? And his church, these people are getting healed all the time. And he says that they— in America, we preach the God of salvation, so people get saved. He said in Asia, they preach the God of salvation and healing, like Christ already came and Paid for our healing. And it's just so amazing because he really defines the difference. He says, yes, God does allow things, but he said if your body— if you're sick enough to where it's impairing you, that's not ever from God. That's because Satan comes to kill, steal, and destroy. And I just liked how he said that. Like, yes, things can be allowed, but illness at its core is death. God doesn't want death, right? Never wants death. Yeah, but that— yeah, you got to wrestle through all that while your brain isn't working.

Yeah, yeah, there's a verse that I have always liked which I was trying to find while you guys were continuing to chat, but, um, it's Psalm 27:13-14. And it's, "I believe that I shall look upon the goodness of the Lord in the land of the living. Wait for the Lord, be strong, and let your heart take courage. Wait for the Lord." And, you know, because, you know, you're going through suffering, you think a lot of times you hear in the Christian community, you know, my healing may be in heaven, you know, might be on the other side. And for, you know, sometimes when Stephen's feeling hopeless and he'll think, "That's my only," I don't know, "way out," or "That's when this is gonna end." And I think, you know, it's okay to believe that you're gonna see healing on this side of heaven. You know, and that verse has always been encouraging to me that I hold on to that hope that God does give that healing and goodness now on earth, not just sometimes.

That's a great point, Heather, because even, Stephen, if you had accepted that and just said, okay, my healing is in heaven, you essentially are kind of pacifying yourself, quitting. And look, if you had taken that, you wouldn't be talking with us now. We wouldn't be sharing our experiences with the internet, and people wouldn't be advancing because of just your fight. Just to be able to get on here and get on Skype with us this morning is a fight action. And if all of us can continue to do that with one another, even, you know, I'm encouraging any of you out there, if you find a Lyme friend, communicate and put that effort. I know just Heather and And Stephen and Sarah and I have just really enjoyed these conversations because it does heal, because it does strengthen and equip you for the next day. So that way you can fight, that way you can give a kind word or give a kind, even a kind look to your spouse who is having a wrong day. Yeah, that is a fight action. And when you're struggling with this chronic illness, every smile is a fighting action. I mean, every moment, every good decision you make is a fight action. Anyway, I'll get off my soapbox for a minute.

I was getting chills up and down my spine.

Oh good, I didn't go too far, did I?

Go, go, go!

Wow.

Well, it was kind of super late last minute, but I sent out some ideas of what we might chat about. I guess we could see where this goes, but I was in my heart just thinking about what to expect with common Lyme treatments. And you hear a lot about detox, you hear a lot about— I did, I started hearing a lot about Rife machines. And just the emotional response to treatment and maybe giving folks a heads up on what it takes to go through treatment and what, what it looks like. Awesome. So you're not surprised when, when it happens.

Awesome. Very good. Yeah.

And then of course we've already been chatting about the, just the mental burden of going through all this.

Yeah.

Yeah. I was thinking, I'm like, we could spend an hour talking about each one of those points.

Yeah.

Okay, well, we're here to do an episode.

All right, let's, let's do it.

I guess we'll just let you lead off.

Okay. Yeah. Well, I, I, what, what was on my heart to kind of share with folks is, um, setting expectations, setting expectations about treatment, setting expectations about even, um, food, setting expectations about some of the things, uh, to expect on the emotional side. And the mental side, and then really to get Heather and Aaron to really weigh in on what's it look like and how can you best support somebody who's going through this from your side of things. And then also what, what, what are realistic expectations of you who are healthy? You know, if, if we're around a bunch of healthy people, what, what should we expect or not expect if we're the ones who are sick in the room? So that's just generally what I was hoping to discuss today. But the first is you hear a lot about detox and, you know, what to do with detox and why are we toxic in the first place and things like that. And I think, you know, I just wanted to jump into one in particular. I had heard for a couple of years about infrared saunas before I decided to just take the plunge and purchase one. And I was pleasantly surprised and disappointed all at the same time when I first started using it.

Oh yeah?

So, you know, I guess first off, you can get them at a really discounted price at Costco.com, right on their website, and they come delivered to your door, and they're like Legos, and you put them together. It takes a couple of people.

And we got ours off of Craigslist.

Oh, great.

Yeah.

Yeah. And did you get a sauna or an infrared sauna?

A sauna.

Okay.

Yeah.

Yeah. And so we, we ended up getting one and that's when I first started using it. And, and right off the bat, I probably used it for 100 straight days before I saw benefit. Wow. So, um, a lot of toxicity going on and, um, I could always tell because this maybe sounds gross, but the towel had the towel I used to dry off with. Was obviously toxic. Yeah, it was more than just, you know, playing basketball and then in the gym and having some body odor. It, you know, there's some notable problems with the towel after that. And it probably took literally 100 days, 3 months of daily use before that changed. And that's an expectation that I didn't have going in. I thought I was going to have a sauna session and feel better afterwards. Instead, what I found was happening with me is I'd have a sauna session and be utterly exhausted afterwards as opposed to feeling any better. And, in many cases, just almost feeling worse, not better. And, I think, I don't know, I don't really have a good comment as to why I kept going other than just hearing about it for so long. I'm like, "There's got to be something to this. There's got to—" people are saying this left and right in all of the talks and forums and books. I'm just gonna keep going forward with this. So just setting that expectation. And now, you know, when I use the sauna now, I use it probably 2 to maybe 3 times per week as opposed to every single day. And I feel refreshed afterwards. I, I may feel, um, like I got a little bit of a workout, but I don't feel worse. I don't feel exhaustion afterwards. I might just feel like, you know, you hear that phrase, a good sweat. Yeah.

Well, and tell us how, what essential oils do you use and how do you use them in the sauna?

So we have found that when we use like lemon oil or in a diffuser and put that in the sauna with us, that we can create a faster, harder sweat with just a little bit of diffused lemon oil. And it's remarkable where I'll actually start sweating in the first 3 minutes. Like even before I'm not, I don't even feel hot yet and I'm already starting to sweat. Wow. And so I would, I would kind of consider that more like an advanced technique where you're not feeling sick anymore from the sauna, but you're finding you're wanting to push it a little bit harder and hotter is not always better. You know, you get to a certain level and hotter probably is not helpful at all. It's the opposite direction, but you can really achieve that same sort of endpoint, that goal, by doing the diffuser in the sauna with you.

Don't forget your, uh, your blanket technique. Emergency blanket. Yeah.

Why don't you describe that?

We look totally redneck, but one of those, um, emergency blankets, the crinkly— Oh yeah. Yeah. He drapes it over the door. And it, it just really holds the heat in way more. So it, I don't know, you get more of a surround heat on the home unit and it really is different. I mean, it's a lot hotter.

That's a really great suggestion because when we— mine is on my back porch and that's actually one of the things when I went through treatment, they had us do the infrared sauna every day. And so it's definitely being used in all the Lyme clinics, but I can't— I feel like I can't get mine hot enough. And so I'm gonna do that. I'm gonna get one of those and cover it and try to do it that way.

Yep, go into the camping section at Target or wherever, Walmart or whatever, and get one of those silver emergency blankets. Like $5 or something? Yeah, even less. And we have— you just fold it over on itself or whatever to the shape of the glass. And it makes all the difference in the world. Um, it also helps create a more uniform heat so your feet aren't cold. Okay. At the same time your head is burning hot, right? So, um, we've done that. And then the other things that we've done to kind of really help with the detox in the sauna is, um, about an hour to an hour and a half before a sauna, take, you know, a dose of niacin or vitamin B3. Have you ever done that right before the sauna? Yes. So have you, have you used it before? Yeah. Yeah. So you get that niacin flush. Yeah. You feel hot, almost like, oh my gosh, I'm going to pass out with my face is so hot, but you're just dilating all the capillaries in your body, getting that blood flush. And that can really help your body detox as well. Awesome. So, but you have to almost time it because depending on who you are and how long your digestion track is, you might not get the niacin flush for 2 hours. Right. You know, and other people may get it right away. So maybe a little bit of practice there. But then, you know, the other thing I wanted to mention about the sauna is after having used it, I don't know, I've probably used it 1,000 times now. I feel like I'm getting to the point where I can almost tell, hey, I'm feeling sick, I'm feeling toxic, I need to detox. This feels like I— it will be best addressed in the sauna as opposed to maybe a salt bath or other— so many other ways of detox. And you, you kind of get to know yourself a little bit better or know the reaction you're currently going through and pick the right method for detox to address it. And I know You guys have mentioned enemas and coffee enemas, and, you know, obviously that's another pathway too that can help detox. And but I have gone through some treatments, in particular the parasite prescription that I was taking for parasite treatment. I would feel really toxic taking that. And I would also try to go in the sauna and I would get like a 1% improvement. Like this. So it was, you know, at least it was the right direction, but it just wasn't sufficient. It wasn't doing it. And so I don't know, just the expectation that not everything can come out of the skin that fast. Some of these things take a long time to really push out in a meaningful quantity.

Yeah, and like you said, that takes 1,000 days of doing something to understand that sensitivity sensitivity. And I feel the same way with juicing and stuff. Like, I've done it so many times, it's such a natural part, and I'm really very in tune because of the Lyme. I'm very in tune to how I feel. So I can— I feel like I have more tools than I did several years ago. I'm like, oh, okay, I overdid it, or something isn't quite right, but I have, you know, a lineup of things that I can do from the sauna to yoga to juicing, to all those dynamics. But it took me years to come to that place where I did get, uh, feeling better when I would do something versus it making me sicker, the treatments making me sicker.

Yeah. Well, so what does it feel like for you now when you go into a sauna and out of the sauna? How often do you use the sauna now that you're in more of a base load?

Base I don't use the sauna as much as I used to because I do hot yoga. So hot yoga is really key for me. I have to go at least 2 or 3 times a week, and if I do that, I keep a lot going really well. Um, so I ebb and flow.

I know that, you know, maybe Aaron and Heather, you can kind of weigh in on this a little bit, but I've had family members ask me like What do you mean you're still needing to detox? How much— how toxic can a person possibly be? And by now you should be a white piece of paper. You are a white piece of paper. Perfectly clean.

Yeah.

And I don't know, so what is that? I just didn't really understand how to respond to that because it just feels like it's an ongoing process. But just what's the— what's it look like from your perspective?

Well, we try to educate, I think, some of our family members, and we'll just say, well, the spirochetes will retreat to their, to their mucous membranes and hide out in there. And, and so, you know, we have to keep doing the process again as they, as they, as the infection gets worse and as the die-off comes, you know. And you just kind of go through the step-by-step for them, and sometimes they listen, sometimes they don't, but I think we had to get to a place, really what helped us the most with all that is we just didn't care anymore. Like, you, like, that's fine, it's their choice, it's not my responsibility to make them understand this. And once we let go of that, that, I mean, I don't say that critically to anybody who's struggling with this, but I think it just lifted a weight off of us where we just felt more freedom to do the protocol and not explain it anymore, you know. It's just there's so many things pulling at you, so many energy sucks that, that Lyme will take for you dealing with chronic illness that you just have to choose, all right. And I am no expert in this, but I'm learning, hey, you know what, if I can let go of that and whatever, that's not my responsibility, that's their responsibility. And That helped me a lot.

Yeah, I mean, and I really feel like there's really a grassroots movement towards organic foods, towards eliminating toxins. I mean, we're exposed to— I think the last, at the conference they were saying it's about 300 toxins a day that our bodies are exposed to. And so it's— and especially when you have a weakened immune system, that takes a toll. So you do have to detox daily because your body is not able to do it for for you?

The book titled The Autoimmune Epidemic— I'm not remembering the author's name, forgive me— but in that book she describes the, the various ways the body detoxes. And when it comes to toxins, 50% of them are removed from the body through the immune system. And that's when I thought to myself, Oh, well then I better focus more on detox because it's my immune system that really needs the support right now. And I, I guess what I used to think is that toxins are eliminated through, I don't know, just through the typical ways that you would think of, but not necessarily using the immune system itself to do that work. So yeah, just 50% of all of our exposure is, yeah, that pathway, the immune system.

So yeah, it's so important. The doctor that we're seeing here in Albuquerque, she was even saying she's a neuroscientist and she got into treating Lyme— she's from New York— because she was doing brain surgeries on patients and they kept finding Lyme and toxins in people's brains. So now that she's practicing here, one of the reasons she's here is because she really just wants to help people. And she was even explaining here in New Mexico that our water quality is really bad. Like, we have really high levels of uranium in our ground. And so she was saying that the only place she buys water from is Whole Foods because they have a very expensive water filtering system. And even we buy our water, water from a company here, and she said, you know what, it's just not good enough. They can't process the uranium out of the water, and that's what you need.

Los Alamos is upriver from us. Yeah, yeah.

So it's just interesting, like, she really feels like a lot of kids in New Mexico that are sick, it's because they can't get rid of all these toxins that are even in their water.

It is such a tricky thing, you know. Water is so important for us to detox, and I, I should admit that I'm a water treatment engineer. That's what I do for a living. Oh. And I do it on a municipal scale, so not on a house-by-house scale, but like a city-by-city scale. And, you know, really when it comes to these things, the goal is to treat for the masses. And so you're treating for the 1 in 100,000 case of cancer or whatever. But the notion that our water is completely perfect is, is wrong. Even though we're in the United States, it's really treated to the various levels of 1 in 100,000 people are going to develop cancer. And, and, you know, the, the, the invention of using chlorine to disinfect our water has saved a lot of lives. But if you're immunocompromised and you're having digestive problems, taking an ongoing antibiotic called chlorine in your water can really disrupt your gut. And it's great for everybody overall, the planet overall, but it's just not great to keep taking. So even in our house, and I've worked in the city where, where we live, and I understand the treatment plant there, but even then we still do our, our own reverse osmosis system on top of that to take the chlorine out and, and try to be as clean as we can with the water.

So Heather, let me ask you a question. As we're talking through all this stuff, and this all takes a lot of time and a lot of resources. Did you have to like come to a place mentally, like when he spends an hour in the sauna for 1,000 days in a row or whatever it is, did you have to come to like a place like, I don't know, this is now my life, or how do you wrestle with all that?

There was definitely for me a long grieving period of letting the old lifestyle and the old things that we would talk about and the old things that we would do go, you know. So, and for me, I think what keeps me going is, is the hope that this isn't for the rest of our life and marriage, you know, when he's hitting a really low spot and he just has no hope and he says, you know, he would say things like, I don't see an end to this. I think I'm gonna have this forever. I, I, you know, this is going to be my battle for life. And I finally came to a place where I said, you can't tell me that. You need to find someone else that you're not married to to share those sentiments, because the only way I can stay married to you is if I think that there's going to be an end. Yeah, you know, to it. Um, I can't live under this cloud of, okay, well, I'm gonna accept that this is the way our marriage is going to be for the next 40 years. So, you know, that was like, that was a point in which I needed to kind of have a boundary of my own and, and really say, you know, I've got to live in a different mindset. But, you know, the— I— Stephen's so much of a team kind of person. He's just, he's not really a loner. He doesn't like to go through life isolated. That's really, really hard for him. So I just spent a lot of time in the sauna. Okay. And you know, it's a great place to do podcasts and listen to books. And we, most of our time, we're listening to you guys in the sauna.

It's true. You can—

the only way to get two people in there is if you're married.

Well, that's actually an interesting point. I was going to say there's different sizes of saunas that are available, and we bought the 1.5-person version, which means if you really love each other, you could both fit in there. I was just going to suggest that there are days where you are so fatigued and so tired, or I'm so fatigued and so tired that I would like to have a sauna big enough to lay down, as opposed to sometimes even just sitting there is more energy than I have to give. But I'm still so toxic from a treatment, from a drug, from a reaction that I, I know I need to be in there, but it, it would be great to be able to lay down. So if I could do this all over again, um, I would buy the sauna that's big enough to at least, you know, maybe not your legs stretched out, but you know, legs folded up, you could at least lay down on the bench. And ours is not big enough for that. So, yeah. So yeah, I tell our kids all the time, you are not growing up in a normal house. This is not normal. I just want you to know this if you go to somebody else's house.

Like, where's the sauna? Where's the enema bucket? Come on.

It was interesting because our 13-year-old is out for the summer hanging out with her aunt in Missouri. And so, you know, the last 5 years have just been horrendous for us, and she's 13. So when I really started going downhill, she was 7. And one of the things she said that she liked being out there is she said, I don't know if I've ever had 3 meals a day. And I'm like, she told Aaron, I'm like, what do you mean? Well, for years I couldn't get up and do stuff in the morning, so they fed themselves breakfast, or we would keep eggs in the fridge like already scrambled so they could just microwave them. But yeah, then there were, you know, if I had to feed the babies, or I'd have them help me get lunch together or whatever. But I'm like, yeah, we— it's not normal because I'm like, okay, you're eating, I'm gonna go do my enema. You're doing this, I'm gonna go on my walk. Or, you know, it's just very different than it was even when they were little. Our lives are totally different. Yeah.

And Heather, I don't want to put words in your mouth, um, but Yeah, but I will. I think Heather would love for me to spend time on any protocol rather than complaining. And so if I'm in the sauna in a way and not complaining, even if it's an hour out of our would-be clean the house or would-be anything, it's better than that, that, that time spent complaining. About being sick or being in pain or whatever. So it's the lesser of two evils to spend all this time on a protocol, right?

Yeah, he'll go on some kind of, you know, not rant or whatever, but just sharing about the realities and what he's dealing with. And I'm like, so what are you reading these days? Yeah, let's talk about that.

What are you learning?

Yeah, we've had to do the same thing where You know, it is, but I mean, and it's, it's a tough spot, Heather, because you're, you're a support to this person who is going through a daily traumatic episode. Yeah, but horrendous. After day 1000 of hearing the same symptoms over and over, you just kind of— I mean, it's not that you get— you— it's, it's more that you get numb to it. It's not that you're not concerned about it, you're just— I know you're Herxine, I know. Your feet hurt, I know. And, and you're— you have to remind yourself to be compassionate, but that it's still very real.

Yeah. Yeah.

And I think Heather and I have been in a blessed situation where we've had, um, some resources, not infinite, um, resources financially, but we've had sufficient resources financially. But Heather still had to swallow this. What, wait, you're going to spend $1,000 on a sauna? Wait, you're going to spend this much money on fill in the blank. And, um, there was a lot of shotgun approach early on in our process. And the shotgun approach is super expensive. You know, when you're doing everything under the sun, that's not sustainable, but you get desperate. And I think maybe that's where your discussions, your talks come in and the education comes in because you can save yourself some money. And some time, some heartache, and some hurts.

Or even peppermint mishaps. Yes, I was painful.

He even tried to convince me to brush my gums with clove. Oh yeah, and he can just like— I mean, and he's fine, and I'm like, ah, it burns. Just like drooling and like, yes, burning and dying. I'm like, how can you you do this? And you tricked me. And I'm like, kind of flush it. And I barely put any in there, but I'm, I'm just like, I need to drink 2 glasses of water to replenish what I just drooled out of my mouth. And I'm like, don't do that to me. So yeah, that's awesome. I'm such a good sport.

Yeah, you are a good sport.

Do this stuff over and over again.

You've tried all this stuff even though you don't necessarily need to. Great. But I, I wanted to throw another detox idea out there, so just separate from the sauna. Um, and you guys have spent a lot of time, um, talking about, you know, flushing with, with enemas. And, um, I'm not advocating this for everybody, but it has been profound for me, is that I'll use activated charcoal. Oh yeah, in the enema. And it's very intense. It's like somebody opens up a floodgate of detox and you feel real— well, I feel wrecked for about 3 hours, but then what comes after that makes it all worth it. And it's just a lot of relief, a lot of pain relief. I don't feel toxic. I feel better. I feel a lot better. And so I don't have it in me to go through that kind of ring out. Um, often, you know, we're talking like once a month or once every 5 weeks because I just find it so challenging. But I have found that to be particularly more beneficial than other ways of doing an enema for me. So I, I was going to ask you about your experience of doing different types of enemas— probiotic enemas, or you've mentioned coffee and salt water. Yeah.

Um, what brand of charcoal are you using? Nature's Way.

Oh, okay. Yeah, cool.

You know, I haven't actually done that, but I know at the clinic I was at that they sold that product on the shelves. Okay. And so I didn't pursue it, but the only 2, 3 types— one water, coffee, um, and then a probiotic. Garlic.

You've done—

oh, actually, yeah, that's true. We've done garlic ones.

Um, you know, especially good for a cold. Yeah, is the garlic. Yeah, but it's very intense. The garlic is— you got to be careful with how much garlic water, or because basically you just take the garlic and heat it in a little bit of water and it extracts really quick. Fresh garlic, of course. Yeah, organic preferably. Yeah, but, um, and it doesn't take very long, and that— but the garlic is— it's intense. It's probably similar to your charcoal.

And that was really huge for me because I would just get sick for years all the time. Like, my kids would get a cold for 24 hours and I would end up being sick for 2 weeks with a sinus infection and 2 ER visits. And the garlic enemas really, really helped start that healing process, is just what it seemed like, because my immune system wasn't wasn't working, but the garlic was really, really helpful.

And where I kind of came up with the, the idea to use charcoal in the enemas, you know, it's sold for oral use. You can take it, right? But I'm spending 4 times a day taking antibiotics or whatever, you know, whatever protocol I'm on, and you don't want it to absorb, you know, the money you just spent on treatment, right? So, um, So that's, that's why, you know, folks are wondering why wouldn't you just eat it instead? It's, I think that's really the key. And then I think also when you, when you eat it, it can be constipating. And so, um, but if it's in saltwater, a saltwater enema, there's nothing constipating about that.

So full disclosure here today, folks. Conversations you never thought you would have.

Well, that's information you need. Yeah, I know. You don't want to be unprepared in a situation like that. I'm just saying.

And for Stephen, yeah, there was no moving him for a few hours afterwards.

I mean, yeah, yeah, that, that—

yeah, for me, I just planned that appropriately.

You just have to carve out 4 hours and say, okay, here's the next 4 hours.

So, Stephen, now I know you have some food issues, so like juicing has been huge for me and it is my go-to thing if I'm feeling worn down. And, um, but I have another friend who can't tolerate it. She has a lot of pancreatic pain and stuff. Um, and you have issues with veggies. Yeah.

Um, a lot of fruit too. Fruit. Yeah, well, fruit makes me really sick. And it's not because it's fruit. I think it's just, you know, the sugar or the fructose in the fruit. But, um, yeah, and, and eating vegetables, um, is a waste of money for me. Um, what goes in comes right out. And, and, you know, talking with doctors about that, it's, it's because of things like parasites or other infection. Um, and, uh, I, I I'm not sure if I mentioned this before, but I never had food issues until getting sick with Lyme. I mean, I just eat anything and everything. But yeah, eating vegetables now is just kind of a waste of money. And so how I get around that is doing vegetable powder. You may have heard of Juice Plus, and there's other— so I do the Juice Plus, and, um, you know, I just work with our representative to exchange out the fruit version of it for more veggies. So I'm doing a triple, a triple dose of the vegetable powder. And so, you know, that's how I'm getting my vegetables in, and I don't seem to have any digestive disruption with that. Um, I will say I don't notice anything, you know, it's not like I take that and all sudden feel better or even energized, but I just, I just know that vegetables and nutrients and phytonutrients are an important part. And your episode 12, I think, went into that pretty heavily, that the importance of good nutrition. So that, that's why I do that. But if I, if I actually eat the, the food, even if it's steamed to death, it just doesn't work for me.

Yeah, maybe you could drink the steam water. Just steam up our food and then give you—

and then I know there's a balance here too, but I, you know, I was just going to suggest too for people who do juice, but if you're on the road, vegetable powder caps or whatever, and, and, you know, maybe— I don't know if it's as good as fresh juicing, but it's better than nothing. Yeah, absolutely.

Yeah.

Yeah.

All right. So what to expect with common Lyme treatments. Let's talk about the Rife machine. Yeah.

Did they talk much about Rife machining at the conference?

A little bit. Very briefly.

It was all about supplements, detoxing, nutrients, you know, eating the right foods. And parasite treatment, that's a huge, that was a huge, huge thing. Dr. Horowitz just kept saying he uses a lot of herbal parasite treatments, and he said my patients always feel better on parasite medication.

Yeah, well, um, I, I would agree with that. I've had 7 rounds of, of pointed parasite treatment, and I've gotten notable benefits on every time. But in between those 7 and all around them I've been on the herbal antiparasites as well, but I think for me that's been massive. I got a major improvement in energy every time. And on this last time in particular, you know, I'm up to 50% energy now, which is totally livable. You know, I mean, you can live life at 50% energy.

Yeah, you can. Hey, Stephen, what— tell us the name of the herbal support you're on and the prescribed?

So Biltricide is the name of the prescription, and it's very common. The World Health Organization talks about it. Um, it's— and so that's an anti-parasite that targets several different types of parasites, not every different kind. Um, and so for me, um, you know, I think the average dose is 1 pill split over 1 day. And, um, you know, since we're talking about setting expectations, I think that that is not an appropriate expectation if you have Lyme disease. I think you need to multiply that by a lot. And I did— I've had a lot of biltercide, not all at once, but over time, and sometimes even a high dose in one treatment, you know, so— but several times over. Not just one pill. So yeah, I think, you know, setting expectations for parasite treatment, what I've been using a lot of is Biltracide, which, you know, Biltracide targets a lot of different types of parasites, not all of them, but targets a lot of them. And the typical dose is one pill, and then it's split over, you know, half a pill, none. And unless you're a Lyme literate doctor or have been through this before, that is woefully inadequate. In my case, I've gone through 7 different treatments and had many, you know, many times more than just one of those, but I've gotten dramatic improvements every time. And so I keep telling the doctor, I'm like, thank you for working with me on this because this really does help. This has helped. And now I'm up to 50% energy. Which, you know, geez.

But you had to push through a lot. Yeah.

The die-off reaction I got from parasite treatment was more than just the puffy Will Smith face, you know, it was, you know, from the movie Hitch. Not that Will Smith normally has a puffy face. Yeah. But yeah, just extreme emotional response. A lot of suicidal thoughts, things like that. It was, it's a very hard treatment, and, but it was worth it in my case to get a lot of benefit from it.

But that's, I mean, when he, he had the first round of treatments and, and it was so hard for us, and then that was kind of the point where we realized we needed a lot of support when he was on it. So we got a little bit smarter, you know, we contacted— I knew and said, hey, Stephen's gonna start another round of this, and we know it does, you know, these things, and we just need everyone to be super supportive. Yeah, text him, say, hey, you're doing great, we love you, we're with you, you know, just constantly kind of bombarding him with positive messages and praying and all that stuff was really—

And there was a massive flare-up of insomnia. So I'd say generically insomnia just every day of the week, right? But there is still an hour or maybe a half hour, but there is some time that I'll sleep, but on the the first couple rounds of parasite treatment, I would go a week with zero sleep. Wow. And I think that's where a lot of the mental challenge came in, you know. Of course. And there's, there's a lot to be said about, you know, we talk about listening to your body. There's a lot under that sentence that says, stop doing this, stop doing this. And so, you know, you have to be able to trust yourself, trust your doctor, trust the people around you. And frankly, there are some treatments that I've gone through where I've pulled the plug on this one. I chose to push through it, and I'm glad I did.

Good.

Yeah, so Sarah, you, you asked about what herbal supports. Yeah, the best way I can describe that is on a rotation. I mean, it feels like every month or every other month, um, working with my doctor, I'm on 4 or 5 different herbal mixtures and changesters, and they rotate frequently.

Now, I forget, which protocol are you using? Are you using like a Brian White or Cowden, or—

it's the best way I can describe it is it's all in. I'm doing prescription antibiotics at the same time I'm using Brian White, at the same time we're using a lot of Nutramedics. Okay. Um, And then just even just basic, more basic items too.

So, and Stephen, you have a physician there that is helping you with your treatment, right? Okay.

Yeah, the Denver area is lucky and fortunate to have a Lyme literate doctor at the Sound Clinic, and it's almost 100% of if not 100% of his practice. Wow.

Awesome. And you've been happy with his, with, uh, the treatment he's been giving you so far?

You know, I, this is part of setting expectations, right? Yeah. Yeah. I, I've been in treatment with him. Um, and it's a fairly, uh, aggressive and expensive treatment and I'm on 18 months now, and up until, you know, round 7 of the parasite treatment and this and that, I, I was starting to wonder, um, you know, is, is this— am I getting enough improvement for the investment, um, right, and emotionally and the time and everything? And, you know, I, I can say that, uh, yes, I am. But it's— 18 months is a long investment. You know, most of us want to take something and start feeling better after we take it. And I didn't get any, any improvements that were noteworthy for months and months.

Hmm. Yeah. Yeah. And that actually seems fairly typical. Yeah, right.

Yeah. And, you know, according to this particular clinic, you know, their typical cases are, um, reserve all judgment for 6 months and then make a call, is this helping or not. And in my case, I— that was probably double or even triple that length. Um, and that the typical length of intensive treatment, um, might be 18 months total from this particular clinic. And then of course you have a lifestyle thereafter. But, um, you know, in my case, it's looking to be like it's much longer than that. Yeah.

I have a neighbor up the street and she had Lyme for several years, years and years ago, 20 years ago. And I walked over the other day and I said, do you ever feel normal? And she said, Well, I don't know. She said it took her 5 years and she didn't have it for very long. And I'm like, golly.

Well, one thing I appreciated in Horowitz's book, um, and this, this maybe is an encouragement to folks out there who have had Lyme for a long time, the, the efficacy and the duration of treatment to get you to a better place seems to be independent of how long you've had Lyme. So if you've had it for 20 years you can still see improvements in the same amount of time that somebody who's only had it for a couple of years.

Huh.

Um, so, well, and that's interesting because for me, I mean, I was so far gone as we were looking around at the treatment centers— well, there's no treatment centers but the doctors here— I did not have 2 years left in me to do a 2-year protocol, which is why we, why we made that decision. But it's, like you said, it's a lifestyle that follows up with that. Yeah. And what was amazing to me, because I had tried so many things and I had done a bunch of different, bunch of different stuff the years leading up to that, is I— my legs started working within 10 days of treatment. Yeah. I went from being in a wheelchair to using a walker within 10 to 15 days. And, and that was amazing to me because everything I had tried up until that point, I hadn't felt results.

Right. Yeah, it's, it's getting that right thing. I think detox is a huge part of that, um, and detox is a simple word to say, but it is really hard to do. When you've got an ongoing source like Lyme disease, it's— but you can get rapid improvements if you get the right combination. Yeah, yeah.

And it is interesting too, because not every, every treatment works for every person. Like, Sarah didn't really experience anything with the Rife machine, but we know people who have experienced huge advancements, like yourself.

Yeah, you know, on the Rife machining, um, I, I don't know, I guess the first thing that I would describe is, um, I got muscle relaxation. And there's a number of, of, I guess, I don't know, responses that indicate that you're getting treatment, an effective response, an effective treatment. You know, one is if you have sinus congestion and suddenly you get a runny nose or you're able to breathe better, or a muscle group or large muscles of groups of muscles start to relax, you know that you're hitting the right thing with, with Rife machines. And, but I will say, at first I didn't feel like I was getting overall improvement, but now that I'm way much further into treatment, I notice a much more profound benefit from Rife machining. And I think it's because when you're so sick, it's hard to tell if you're getting any better or not. It's— you're still, you're still floored with sickness, so it's really hard to tell. And I think that's also a matter of setting expectations, that sometimes you just have to push forward on faith that you're doing the best you can and that it's going to be helpful.

Yeah, yeah, there's still stuff like we're gonna put our kids on a pretty hefty protocol here in the fall, and I'm trying to figure out all that stuff. But I told Aaron, like, even going to that Lyme conference, I'm like, we're doing all the right things to the best of our ability, to the best of our budget. We're pushing forward in, in a lot of directions. But you need to hear that because sometimes you feel like you're kind of just you know, wandering around in the dark trying to figure stuff out, which I know we're not, you know, we're years into this, but it was just encouraging to be like, okay, even though we don't feel like we're making a ton of progress when you look at a week or a month, when you look back over a year, you're like, oh yeah, things are way better. And you know, you guys are in the same boat as we are, like whatever you're doing now you then have to turn around and do for your kids. Yeah.

Yeah, we had a real eye-opener and a benefit and a success story where last weekend we went to a camping ground with several friends and we had gone to the same camping ground almost exactly a year ago. And that's where we could really measure the improvements that our family has seen where a year ago, there's this short nature walk path next to the camping ground that I was not able to walk. And this year we were walking it, pushing kids on their little tricycle bicycles, and I was riding my bike. And, oh, you know, it just was really eye-opening to see the difference. That's awesome. But that's 12 months, you know, right? Yeah.

So Well, and we had a similar thing with VBS this year because we do VBS basically in June every year, and I, I didn't volunteer to do it. Like, I was helping, but I wasn't committed to anything. But as I look back, I said I— from where I was at a year ago, I said I can do about 15 to 20 more tasks per day than I used to, which is huge. You know, that means you can load the dishwasher and, you know, do a bunch of stuff, but we're still a long ways from normal.

Yeah, you know, one of my favorite things that's happened— and again, this is following the 7th round of parasite treatment— but I got a breakthrough where I could actually pull my eyes up off of the ground and look more than 2 hours into the future, and even to the point where I might even be able to look as far forward into the future as the next weekend. And that's huge. That is so huge. I mean, there are times in Lyme treatment where, um, you can't look more than 1 second ahead of where you're at, and it's too overwhelming. You're in too much, uh, a state of too much suffering, too much pain, what, you know, all of the symptoms. And, but just getting to a point where I can look, you know, several hours a day or even as far as a week. I'd love to get to the point where I can look a month in advance, but— Right.

Yeah. I would frequently ask Stephen, you know, oh, you know, we had this thing going on this weekend. Does that sound like something you want to do or think you can do? And he'd just look at me and say, I, I just need to get through the next 5 minutes. That I can't, I can't even think about, don't, don't ask me about the weekend. You know, I'm surviving right now. Like that's where all my focus and energy is.

And I just kind of got to the point of, I don't ask those questions, you know, I can now, I think, but I, I think, you know, when, when you have somebody who's, uh, healthy in the room talking to somebody with Lyme disease, it's helpful to ask the question, are you in a place where we can have a discussion on, you know, next weekend or whatever? And to really be intentional not to take it for granted that they're able to think past the next minute.

Right, but that's a huge— I mean, you guys talking about that, that's a big learning curve. It took us years to get to that point where— because I would say, you know, kids are asking me all these questions and I'm like, look, I'm not— I, I can't figure that out right now. I'm not at a place where I can answer questions because I can't figure out the consequences or the unintended repercussions of an event.

You have to weigh it out. A trip to the park on Saturday means a whole bunch more than, than a normal family, you know. Normal family, okay, gather some toys and a cup, an umbrella, and we're headed off. Not with Lyme. Lyme, you— it's a whole different ball game. Yeah.

Do we have anything else that has to be accomplished today? Right. Because you're putting that at risk. Yeah, absolutely.

Yeah.

Yeah.

Here's another thing that, and I think this came, this did come later in treatment for me where, you know, I'm trying to listen to my body and listen and to try to strategize on what I can and can't do in a day. And I'm feeling at face value, my body is saying there's too much pain, there's too much fatigue, there's too much going on right now, don't do anything. But now that I'm further along in treatment, and this is really good news, I can— I know that those aren't— what's the best— what am I trying to say?

You can talk yourself out of that a little. Yeah.

So I can go exercise anyway and not have multiple days of repercussion, right? So the body is saying don't do anything, but I do it anyway, right? I don't have the dire consequences as a result, right? It used to be every once in a while I would try to do some exercise and I'd end up in a chronic state of vomiting for several hours. And now, even though I have some nausea going on, I'll go exercise and it's okay, like, right, the nausea doesn't get worse.

Yeah, and I feel the exact same way. I used to just force myself to do my whole protocol, and now I can do my protocol and more and not be completely wiped out for days and days. I still have to have rest days, but yeah, I don't pay as heavy of a price. Right.

And then of course, you know, the stronger it's like, everything starts spinning in the right direction. It takes a long time to get traction. In my case, 18 months of intense treatments. And then you start getting traction, and then you can take on more and more and severe treatments that are more beneficial, and you get more and more strength to do more and more. And it just keeps spinning in the right direction, almost like the way that you went down in the first place. Yeah, absolutely.

It is. It's, it's hard. It's unfathomable. It really is, the amount of effort it takes to recover from a trip to the park.

Yeah, but you, you You know, you just got to plug yourself into life, um, in every way that you can, even if you're just there physically but you're emotionally checked out. Doing things at regular intervals that are somewhat normal, I think, is a part of a piece of the puzzle.

Yeah, it's funny, I find myself talking myself into doing things. Like, for instance, I wanted to go jogging. I wanted to go exercise, and so I can— or actually, I was gonna go stretch on the back porch. And so I wanted to put my tennis shoes on, and I go to pick up my tennis shoes, and my brain is telling me, you don't have time for this, you can't do this, you don't have enough energy, don't even bother going in the other room and getting socks because you don't have enough energy to bend down and get socks and shoes. And, and I go through this like mass amount of internal dialogue because I was in survival for so long. I didn't have the stamina to bend over. I had to make hard choices because I couldn't multitask and I couldn't— but I have to like stop my brain and say, okay, all I need is shoes and socks so I can exercise without hurting myself. It's okay. And I have to like talk myself down from that state of chaos in a simple tiny little task. And just give myself permission, like, okay brain, I needed you to be on high alert, but I don't need it anymore. All I need is to make the decision to get my shoes and socks. But that one single thing was just this huge obstacle for me before. Mm-hmm.

Yeah. Wow. Surfing back in my mind through all of those similar events, and it's, it's just amazing.

Yeah, we, we look back all the time and we're like, how do we make it through that, right?

Oh yeah, all the time. Yeah, if I allow myself to, you know, take a little trip down memory lane, I can just instantly be, you know, hot mess and tears. Yeah.

Oh, I know. Even the question every once in a while, how's it going? Oh, I groan at that question. I'm like, I'm fine.

That's the word. That's the word we use, fine.

And then we laugh at each other.

Yeah, because you're like, you can't even explain it. If I say even— I don't even want to go there, first of all, because like you said, I'll, I'll be a mess and upset by just remembering all the trauma that we endured yesterday. Yeah.

So, yeah, well, there's another expectation that I, I was hoping this group could chat about, and it's the expectation of what happens to somebody when they're going through a HERCS, um, the mental the mental component. So the, you know, the physical component is you feel bad and things like that, but what happens mentally? Um, I, you know, I can speak for our family when our kids, um, or when I get overwhelmed by something that should not overwhelm a person, right? Um, overwhelmed by leaving the house, overwhelmed by deciding if I should eat dinner or not, or what to eat. Very, very basic decisions. And if I find them overwhelming, that's one of the first signs that I'm going through, um, a Herx reaction. Huh. And I think for me, um, it's not just Herxing for a few hours or a day. It's when I, when I get on a different treatment protocol, I can hurt for several weeks in a row.

Wow.

And I don't know what your experience has been or with children and so on, but Heather's thinking about something right now.

What are you thinking? So our 4-year-old is in month 3 of treatment and we were in the car and listening to the radio And he just lost it because we were listening to a song sung by a female. I mean, like, very, very distraught. We get, you know, we're almost home and said, well, we're almost home. You know, we get home and he's, you know, he's 4, he's not that big, but he's like hitting me and pushing me and just, I mean, literally, and this is not normal, not normal at all for him, you know, over a song sung by a girl. And my first reaction is, you know, pull yourself together. It's not that big of a deal. What is wrong with you? And then I have the aha moment of, you know, he's hurting. You know, he has no control over this. He doesn't, he's just, you know, he can't, he just, it's too much. It's just too much.

And well, his little body is spending so much of its resources and energy trying to stay sane and trying to stay on top of things that it's like the straw that breaks the camel's back. Yeah, like something happens and you just literally don't have the emotional capacity to cope with it the right way, right?

You know, and so I went— once I realized that, okay, this is a hurt, um, then I can I can explain it to the other kids who are just like, you know, "Powell!" Yeah. Getting frustrated at him because he's, you know, freaking out and, you know, he's herxing, it's okay, just let him be. We'll just try to talk him through it and, you know, get him to rest. So, but until I realize that I'm, I'm totally frustrated too, right?

Well, it's so fascinating because our two kids who are adopted from Ethiopia both have attachment and reactive attachment disorder issues, and at the base of all those issues is the fact that they are highly traumatized. Yeah. So, and one of the benefits that has come from me having Lyme is that I recognize that in them and myself. It's, you know, and for instance, like our daughter, she can have a great day at school, and if she trips on a rock in between the bus and the door, she's falling apart hysterical. And for me, that was really frustrating because I'm like, are you kidding me? Yeah. But what's going on, and I recognize it now in myself, is that your body is so maxed out and trying to heal, trying to keep things— you're in this heightened state of alarm at all times. Your muscles are tense way more than you want them to be, and it's just that one little extra thing pushes you over the edge and you can't rationalize your way out of it, right?

Yeah, that— I think that's a great expectation to let folks know where you can, you can literally hurt yourself out of being rational. And in that light, it can be dangerous. You know, you're already in a state of— you're already at your limit. I think, you know, I don't want to speak for everybody else, but, you know, for me, there are plenty of times where I just assume not go through any of this and just be done. And when you add that on top of hurting yourself out of being reasonable and rational. Now you're in the red zone where you, you've got to have loved ones around you, you know, and they can't leave you. I've had several, uh, cases where Heather just chose not to, and I'm glad. And I've asked her on occasions too. Wow. You know, this is, this is a period of time where you can't— I can't be alone. Yeah.

Yep.

Wow.

And those are exactly the periods of time where I'm the least fun to be around.

Yeah, where I want to, yeah, go running for the hills, but wow, I can't.

Well, and it really is a perfect storm, huh?

It is, and it's so oppressive. And that's what we talk about all the time, is that, okay, if this was like a 6-month window you know. Yeah, okay, I can do 6 months. Yeah, you push, you change. But when you're looking at 6 years or 16 years or whatever it comes to, there is just this massive level of oppression that you have to learn to deal with in order to get through it, um, because it's just so long.

Yeah, and we— and you know, life is like that. We all go up through ups and downs. And I was talking to my dad about this too, because even with our finances, everybody goes through finance, you know, we've had up and downs in not economic finances, we have up and downs in our economic health or whatever you want to call it. And when with Lyme, with the chronic illness, it holds you at a level that you don't have the ups, you never afford the ups, you always have the downs, but You know, the natural balance of things is you, you recover for a week to re— you know, for the last 3— the rough whatever you did for the last week, right? You have 2 weeks to recover. When you don't have that with— in the Lyme situation, in, in the chronic ill, it is very wearing. And I'm so glad you brought that up because that's a very good point, um, for the caretakers is to recognize that this person is, in a sense, out of their right mind. And because we do know the leading cause for chronic Lyme— for, of death for chronic Lyme is suicide— that's something that we all need to be very aware of as the caretakers and, and more comfortable talking about it.

I know when I saw it a lot of help in this regard. You know, one of the key points and takeaway points is that by talking about it, yeah, you're not increasing the odds or the likelihood of an occurrence, right? Really?

Okay.

But by burying it, right, you're not helping. So it's really uncomfortable. I mean, it's, it's uncomfortable to be the person in that position. It's uncomfortable to be next to the person in that position, but talking about it is, is better than not talking about it, right?

And the thing about talking about it too is if the wrong person hears you, they may feel that they are responsible to call you in to take action. Yeah, you know, so for example, when Stephen was going to start some more treatment and we knew that it gave him suicidal tendency. And I sent that information out to like our church prayer team. I specifically left our church psychologist off because she's by law required to call that in and say, I've got someone who's suicidal. I know of someone who's suicidal. Right. Um, you know, so I specifically said, you know, um, don't share this with, you know, yeah, this information, because that's not helpful to have him go to a psychiatric ward, right, this treatment.

So yeah, I tried that, by the way. I thought I would get help there, um, during one of those internal dialogue episodes that you talked about putting on your shoes, right? I, I had one where, um, I just wasn't sure that you know, I could put my shirt on. I mean, I was in so much pain.

I, I just—

out of your mind.

I was so out of my mind. I had two level 10 pain seizures back to back over a 3-hour period. I was fried. And so we thought we were going to get help and, and go to, uh, the mental hospital in this nearby town. Um, and I'm, I'm not trying to decrease the benefit that those places can offer people, but it did not help me with what I was going through with the Herxing and everything. And I think it's just better to be open and honest about it with the people that are around you so that you know what to do when things like this do come up, you know, to try to anticipate it a little bit. But I think would have been really nice. We, you know, like so many of us with Lyme disease, we're surfing through a lot of these issues for the first time and flailing basically, right?

Yeah, and it is, it's so heavy. You have to— one of the things that I've been telling Aaron is, I said, I feel like, um, with Lyme, whether you want to be or not, you're in a relationship with the disease. It controls aspects of your life. You have to think about it. It consumes resources. And in understanding that you do, you are in a relationship with the disease and it's not going to go away. Like, this kind of will impact our life in some way for a lot of years. And in understanding that, then you can kind of try to put up those boundaries like, okay, this relationship is toxic at the moment, how can we stop that? Um, or, or just understanding that, you know, there's cycles to it. And, and yet you're not going to get a lot of those answers and those insights that we've been talking about over the last hour. You're not gonna— very few people get that from their medical team, right? It has to come in in different ways.

Yeah, that's a really good point. And I think that's much to the frustration of the medical community too. Um, you know, doctors that genuinely have a heart to try to help you, but some of the most beneficial components that can help you are outside of what they can offer. Yeah.

Hmm.

Yeah.

Well guys, we have been talking for nearly 2 hours.

That's our specialty.

I know, it's awesome.

We're really good at talking.

We're in the right business then, I guess. Thank you so much, you guys, for being with us for this extended period. We've really enjoyed enjoyed it. Before we let you go, is there anything else that you guys wanted to talk about?

There's one more thing that I wanted to say. Um, you know, if, if you have Lyme disease or chronic illness or think that you have Lyme disease and you're listening to this, um, I want you to know that, um, all of us on the show here, um, are sending out positive thoughts for you to pull through this. I want to send encouragement and just let you know that there are other people out there who are challenged with this situation that are praying and sending love to you right now.

That's awesome. Thank you so much. Perfect ending.

I love it. Thank you.

Yeah.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters! Keep it up. We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The Information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied. Okay?

Okay.

LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay? Okay. If you think you may be suffering from, from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln? Got it.

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