033 Best of Lyme Voice Episode #3

From the creators of Lyme Voice and Disappearing from Society comes a brilliantly simple idea, but this time it comes as a book. Imagine a world in which birds can talk like people. You'll get a bird's-eye view of life with Lyme disease as one bird family must unite to overcome the obstacles of life with Lyme disease. Guaranteed to make you laugh and dry. Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available today at Amazon.com.

Hi folks, welcome to another episode of LionVoice. We are so excited to have you here. We're celebrating one year by relaunching some of our favorite episodes. In the meantime, we're going to be hard at work behind the scenes working on some amazing new products and projects. So keep listening and we'll have new episodes of LionVoice coming up soon and new projects.

I remember just being so envious because his pain had an identity. They knew what was wrong and he was going to be out of pain within hours. They were just going to go in and do a surgery. Yeah. And I was like physically angry with him for having such an easy diagnosis. And I just thought, I mean, I was truly envious of him. And he's writhing in pain and I'm thinking, this sucks so bad because my pain is so off the charts. It— I can't even describe it. And yet, and it's gone on for years.

Yeah.

You feel like a flake. You feel like a loser. You feel like maybe all of life— just life doesn't make sense. The pain is so overwhelming.

Congratulations, Lyme fighter. Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. We're your hosts, Aaron and Sarah Sanchez. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, to educate, and to encourage you on your Lyme journey to wellness. Together we will fight, together we will heal, and together we will live. Hello everybody, uh, today we're going to talk about pain. And, uh, this was a surprisingly hard episode for Sarah and I to record. We had actually hoped to do a recording, uh, with an interview, and our plans didn't come through. Uh, next week we hope to actually have an interview with someone other than ourselves so you don't get bored with us. But this was an important, uh, really important issue. It was extremely hard to record. I think we ended up recording it 3, 4 times. Just because there's so much information regarding the topic of pain that we wanted to communicate. We just couldn't get it down in under an hour. So this was a very labored episode. I hope you understand where we were coming from. Again, as all of our medical issues, these are our opinions. Please consult with your primary doctor or your specialist doctor and Be in communication with them about how to treat your disease. And because it is so important that you communicate with them, because each disease is different. Every person is different. And Lyme is a tricky one. And you have to be proactive. You have to be a real fighter just to survive the day. Hello, Lion Voice. No, that's me. Hello everybody, my name is Aaron Sanchez. Today I am doing something that I've been wanting to do for a long time. I am interviewing my wife, Sarah Sanchez, on the topic of pain. And here at Lion Voice, we like to talk about fight, heal, live stories. So tell me a story where you figured out that this is abnormal. This is not, this is not a normal thing.

Okay, I think really, at least in my case, I actually had thousands of these moments where I was literally perplexed by my own body because I'm like, this shouldn't be hurting this bad. Or I stub my toe and it was just unbearable and like, I shouldn't be hurting this bad. So I think that for anyone who deals with chronic pain, You go through thousands of those, like trying to figure out what's not quite right. But one specific instance just sticks in my head because I thought it was, as it was happening, I just kept thinking, this is so pathetic. I can't believe this is my life. And we were in the ER for one of many. I was always in the ER because so many things were going wrong. And it was a typical visit. I just got to a breaking point where I felt like my pain levels were so high, I just could not endure it. And so the only thing I knew to do was go to the ER. And they were treating me like they normally do. They question you, they assume you're probably a drug seeker. They asked you about your depression. And I knew I was on my way out, like nothing was gonna come of this. So we had just wasted several hours, a couple hundred dollars, and again, nothing was coming from it. And there is this young man sitting across as I was like waiting for my discharge papers, which could be 2 hours depending on what's going on. So they're not helping you, but they also won't release you to go home. And so hours are passing and this this guy who was about my age was there with a parent, and he was writhing in pain. Like, he was rolling on his stomach and like holding his side, and he had a burst appendix. And they were in the process of getting him scheduled, and, you know, the ambulance was going to take him downtown and stuff. And I remember just being so envious because his pain had an identity, they knew what was wrong, and he was going to be out of pain within hours. They were just going to go in and do a surgery. Yeah. And I was like physically angry with him for having such an easy diagnosis. And I just thought, I mean, I was truly envious of him. And he's writhing in pain and I'm thinking, this sucks so bad because My pain is so off the charts, I can't even describe it. And yet, and it's gone on for years.

Yeah.

Ha, you feel like a flake, you feel like a loser, you feel like maybe all of life, just life doesn't make sense. The pain is so overwhelming and so distorts things and distorts emotion and it just overrides everything. And so I just remember being so envious of him because his ordeal was going to be done in a day or so. And I knew in a day or so that I would just be waiting to see another specialist.

Yeah. Yeah, that is an incredibly dark place. So, you know, so going back to, to our listeners, what, what about this story do you want them to learn from.

Yeah, no, no, yeah, obviously hindsight is easier. I feel like for so many years I really worried about becoming addicted to the paid medicine that I was taking.

Sure.

That I didn't have, and I grew up in a home where there wasn't even ibuprofen or anything, but I wasn't in pain. A pain would be like a headache and then it would go away. And when pain doesn't go away, it requires you to just function so much differently. And so I wish that someone would have said, the only side of it I ever heard was, you're in pain, here, try taking this. But then we really had to wrestle through how much pain medicine is okay to be taking. And ultimately, like, you don't wanna be living on 8 to 9 supplements or 8 to 9 prescriptions, many of which are different types of pain medicine, and the emotional ups and downs of being on pain medicine and the side effects. Oh yeah, each medicine, I usually had at least 1 or 3 side effects to go with every medication. And so then you're dealing with pills to fix those side effects. Yeah, a lot of pills, a lot of toxins going in your body. And so But that was the only side I only ever heard about, the don't become dependent side.

Right.

Nobody ever said, hey, by the way, you're really, really sick. This is just part of life as a sick or dying person. And of course, like when people are dying, and which is what you're doing, your body is shutting down on you really, which is why you're in so much pain with Lyme is you're, your organs are just being attacked, your nerves, all these different aspects of pain. But nobody said like, hey, this is just part of the journey. Like, when your pain levels get back under control, we'll get you off at that time. There was always this push to quit taking pain meds, and, and I didn't know anything else.

Yeah, and seeing— and you, you brought a good point. Because hopefully our listener out there has a diagnosis or is suspecting a diagnosis.

Right.

So, you know, the important part to realize in our story here is we were trying to fix something that had a— that the doctors were planning on curing. Like, for instance, when you had your car accident. So you were involved in a car accident.

Right.

They gave you pain meds.

Eventually your symptoms from the surgery should have, or from the accident, should have released and I should have gotten off those medications.

But that wasn't the problem. The problem, the cause of the pain was Lyme itself. And yes, you started taking pain meds at that moment That was taking care of the symptoms and the Lyme pain temporarily.

Temporarily, right.

But in the— so the time frame that they gave us for you to be done with your surgery, whatever it was, 12, 12 weeks came and went, and you're still in pain. You still need pain meds. They're saying you should be done with it. But at that point, we didn't realize that the pain meds were actually going to solve the Lyme pain as well as the back pain. Does that make sense?

Yeah.

Is that fair to say?

Yeah.

Okay. So once you have the diagnosis, then you can say, okay, now we're treating not just a trauma, we are treating long-term. And that is why going to a pain clinic is a— because a pain clinic is a long-term approach to pain.

Right, right. That's a really good point.

And when we go to the ER, and this is what we were doing, correct?

Yeah, that's a great point.

We were doing an ER, a trauma visit fix. Yeah, your trauma should be over now.

You, you're— gosh, babe, I don't even think I'd put it— I wouldn't have thought of it, but that's what we are doing. We're trying to treat a chronic illness through the ER, right? Because the treatment I was currently getting through my primary and stuff was inadequate. And so just being in that place of just extreme pain, total hopelessness, yeah, we were wanting them to fix a chronic issue. But, and I remember thinking and telling you, okay, maybe this, maybe this time when I go in and say it they'll know what's going on. Like, I just kept thinking, okay, I couldn't stay home anymore and just exist because the pain was so off the charts. But I just kept thinking, the more people I get in front of, eventually someone will know what's going on. And that was what my hope was within those visits.

And essentially, that is what happened. It was a try—

yeah, eventually we did find some trial and error.

So And now we're trying to prevent that with our listeners and hopefully direct them, at least get them on the path. You know, obviously you need to speak with your doctor and always be in communication, you know, with your doctor. But for us, we found out that there is such a thing as a pain clinic, and now we're taking a long-term effect. And so to be able to switch to that, that's when you can allow dependency to become part of the long term. Now, the long-term effects of using pain meds, right, we realized— and so this is kind of the part, this is another, this is a great part to lead into our heel section. We have our diagnosis, we, we need to do a long-term approach. So as we started to look into that long-term approach, There's a, there's a big debate as we're talking dependency versus addiction. We can, we put those two together when in reality, yes, you were dependent on those to function because you were sick.

Because I was sick, right? But see, even that, you know, for so many years, yes, I had a diagnosis of fibromyalgia or chronic fatigue, but I didn't have a diagnosis And so that was a huge part. And there's so many people out there who are in that realm of things starting not to work, years turn, the years are getting stuck together by one thing or another not working correct with your body. And it just needs to be talked about that those differences exist. You have to treat problems. If you have a chronic problem, you have to come up with chronic solutions. And so, Right.

And if I can interrupt you just a little bit there, and that I think is the important part that our listener needs to come to, is that dependency is okay in a long-term approach, right?

Yeah. I mean, you don't have any choice really when, when pain does not go away. And I know that there's a lot of people out there who So, you know, I just think it's part of the process when your pain doesn't go away, you have to start wrestling with those things like, oh, am I addicted? Is this something that is being caused by one of the many medications I'm taking? You know, you have to problem solve for, I mean, you spend years and years problem solving and we've—

Right, you're so right, babe. And that's where I think we can really, If you people didn't know out there that pain clinics do exist and the— you don't have to do the, the same approach that we did where we kept trial and error, trial and error, do this, do that. Go to the experts, take a long-term approach. You have the diagnosis of Lyme or you're suspecting of that. Change your attitude to a long-term approach.

And you know, for me, one of the things I kept trying to describe was bone pain. I kept saying like, my bones hurt. And it was my femur. I could feel my femur and my cervical spine and you could just feel all my bones. And that's not normal. I had never gotten to that place where I'd said that before. And even when someone says, gosh, I'm in more pain than when I ever was giving birth to my kids, like we should pay attention to those things and realize like, oh my gosh, there's people living with such high levels of pain that we have to clue into what they're saying and to empower them to to try to fix some of those things. And that's one of the things I wish I had done sooner was, you know, I think one of the refreshing things about going to a pain doctor for me was he actually saw my pain. Because I saw him about every week, there were days or weeks that I would have these flare-ups and I was just spent. I have, I now know that that was a Herxing reaction and there was, different inflammation at different points in my body. But until he saw, as you know, they're giving me shots, I'm in such high levels of pain that they're giving me shots directly into my muscles to try to block some of those nerves. And he could tell by the amount I was bleeding that my muscles were just as tense as could be. And to me, my primary doctor, we never got to that point where she physically understood what I was saying. It wasn't until I saw the pain doctor and he had seen me and he knew all the things I was trying to do to eliminate the pain. And yet we were ending up right back where we were despite what we were doing. But when he saw that pain, that was huge for me because I had been describing it for so, so many years that he really was, seeing what I was trying to describe.

So if we can summarize, your pain is fight story is don't stop fighting. Don't accept when you come to those moments where you realize this is not normal. Keep looking for the next solution. Keep fighting. Don't settle.

Yeah, I feel like I settled because I was because I didn't know any different, because no one was offering me any solutions. I settled with very high levels of pain because I didn't want to take too many, which is wise for sure, right? But at the same time, you know, really having no understanding of what was going on and how really, truly I did need extra support and extra help. And You know, I've talked about Melanie Thurnstrom. She wrote "The Pain Chronicles," and that is a book my pain doctor introduced me to, and it's excellent. I would read it, listen to it on Audible, whatever your mode is, because she talks about the religious beliefs people bring to the table to their pain, cultural beliefs, familial beliefs. She talks about different types of pain and how really even within our medical system, most of the treatments for pain are designed for acute pain. Wow. They're not designed for chronic pain. And there's so many studies.

Who would have ever known? That's amazing.

Within this book, she quotes a physician and he said, chronic pain is like water damage to a house. Eventually the house will collapse if there's enough long-term chronic pain, just like if there's enough long-term water damage, eventually the house collapses because you can't live within, within those levels of mind-excruciating pain.

As we continue on with the heel portion, to get a little bit specific, I wanted you to talk about some alternative pain methods? Because we've talked a lot about high-dose pills. Um, you know, we're usually talking about, uh, pills that are— you know, when you were at the ER— when— I'm sorry, when you were at the pain clinic, you were taking an assortment of pills?

Yeah, I was taking pain— several different types.

Several different types. Okay. All that have been known to be addictive and and have trouble. So we actually—

Correct.

Once we understood that we are long-term, we started looking at some alternative ways because we knew that it could damage your liver. They're meant, payments were designed for trauma, not for long-term. So that's an important part for us, more important step for us, we realized we need to start looking at this long-term.

Yeah, once I kind of came to be at peace understanding like, okay, I have to take this 'cause my pain is just off the charts. Then I felt like there was a couple of years where that was okay. You know, it wasn't great, but I adapted. But then eventually the pain just came back. It didn't matter how far away I pushed it. Eventually the pain just pushed forward. And so when I was really feeling like I was already maxed out on pain meds, that's when we started looking into medical cannabis card and also alternative treatments. And I wish I had known that there were alternative treatments available like coffee enemas because—

Well, now let's, yeah, you're making a good point there because to explain to people our state of mind, We were the, we didn't do a whole lot of alternative medicines. We weren't cannabis, medical cannabis people. Like, this is all kind of new stuff. Oh yeah, totally.

The more desperate, the more years that went by, the more desperate we got.

Yeah, we were kind of converted hippie-ish.

Yeah, we're totally hippies now. Yeah, yeah, like, You, you come to these places where, well, if it doesn't work, that's the thing. Like, for me, it— everything eventually quit working. And honestly, here, here's another thing to think about, is for me, as things quit working, I was kind of thinking that it was probably the law of diminishing returns. So like, the longer you take pain medicine, and this is what they tell you, the longer you take it the more you need. And so for me, it was even hard to figure out, okay, first of all, what kind of pain, but then was this a pain that needed to— I didn't understand that even if you're taking pain meds, you can really pursue these alternative sides. I kept just thinking one thing might eventually start working or someone would figure it out. And I wish I would have just taken a much more holistic, broader approach and said, yes, while I'm doing these things, I'm also going to be doing coffee enemas. I'm also going to be doing literally anything else I could figure out.

Okay, babe. So now as we move into the healing part of— we've talked a little bit, but I kind of wanted to hear one more story from you. Well, not a story, but a recommendation. You were telling me earlier about a naturopath.

Yeah, you know, in addition to having a primary, in addition to having a pain doctor and whatever other specialists you see, I wish I would have known, I didn't understand that there was such thing as a naturopathic doctor. And I remember wishing, I felt like I was always doing that, like taking the advice my chiropractor gave me and trying to merge it with what my MD was saying, but I didn't know that you could just go see a doctor who specializes in both alternative and traditional medicine. And once I started doing that, doors just started opening for us on a, on a lot of levels that I, I hadn't even been aware of. And so, um, coffee enemas are part of that. And for me, there was and you shouldn't necessarily do coffee enemas without juicing. At least that's what it says in the Gerson book. They really say you need to do them together so that you don't get dehydrated and different things.

So is that something that was introduced, you know, coffee enemas, and, and that was introduced to you through the program? Through the—

actually, at that point I had a chronic fatigue diagnosis and I had been the Gerson Institute. They have— you can go look on Gerson Therapies and the Gerson Institute, and they treat chronic fatigue. And since that was really the last diagnosis that I had been going off of, when they said that they could treat it, I thought, okay, great. But you couldn't even go out to their clinic. And this was interesting— patients with cancer can go, but if you have a chronic fatigue diagnosis, you have to be on the protocol of juicing 6 times a day and 3 coffee enemas a day for at least, it was 4 to 6 weeks at that point. And so—

That's, yeah, that's intense.

Yeah, and we were planning on me going out to one of these clinics and in the meantime, we ended up getting the Lyme diagnosis and going out to Shea Medical instead. But when I was reading, I, you know, had that chronic fatigue diagnosis and there's not a lot of people treating chronic fatigue and they had a lot of really great stories of people who were healing, and I really wanted that mix of both alternative and traditional medicine because I feel like they're both really valid, right?

So your suggestion is, for those out there, is to just go look up a naturopath?

It's just another perspective. And I mean, just like within a business, you have people that you have, you know, you have a team that leads you in a direction. If you're running a business, you have a CPA and a lawyer and a bookkeeper, and you have these different aspects. You have to approach your health in the same way. And I waited too many years to start getting multiple opinions in, and I didn't. And honestly, it was hard for me to hear my MD say one thing and then infectious disease say something, and it was always hard for me to reconcile all these medical people having different opinions. But you have to do that. You have to take all those different opinions and follow your gut and figure it out. And honestly, I just didn't know that there were more options out there. Nobody sits down with you and says, here, let's figure this out. Traditional medicine isn't working. And so So we need to start considering other things, and there's a lot of really great things about alternative treatments.

Right, okay. Liv, what are you doing now that helps you manage your pain? What are some of, take us through, more specifically, take us through a daily protocol of what you're doing to help manage the pain, just so people can understand kind of what the other side of treatment looks like.

Yeah, that's a great idea. So we've talked about this a little bit, but really the reason that this whole podcast came into existence was because I've been talking to patients, potential patients who are considering going out for Lyme treatment. So I've heard a lot of their stories. And within those phone conversations, Aaron was like, hey, you should record those, or we should air this so we can talk about these things. And so pain being such a huge issue, people want to know what my protocol is. So I do consider myself in remission. I have very good scores on all my blood work, and I'm not in pain, and I'm increasing my stamina still every Every month that goes by, I feel a little bit better. So, but within that, people are often very astounded by the amount of time that I spend on my protocol to stay out of pain. Right, yes, tell us more about that. So every day, and I do obviously miss a day here and there, but I never miss 2 days in a row. And so that's kind of been my marker is I've gotta exercise And I couldn't have done this before the— I got on top of the symptoms. The pain was just too much. But now that I am not in pain and I'm working on overcoming a lot of the atrophy, so I either walk or do yoga every single day. And in addition to that, I do coffee enema once or twice a day depending on how I feel. I also juice and I have an organic juice mix that they recommended. And so I do that every day to make sure I'm just flushing my body full of antioxidants. And, and then supplements. And I take, I don't know, about 65 supplements every single day throughout the day. And that's based on what my doctor out at Shea Medical recommended.

And he went over your new— your nutrition.

Yeah. And I can tell. Like if I don't exercise, I start to get more arthritic. And when I do and I can stretch and, and because I suffered and was not even physically able to do that stuff for so long, to me it does require discipline, but it's actually so much easier. Every day is so much easier to live following my protocol than it is to live to live in bed. And so some people don't like protocols. Everybody has to come to their own understanding of the disease, their own understanding of their symptoms, and take all of the information that all these different doctors are giving them and then kind of wrestle with and flesh out something that produces results. And for me, this system produces results. And I cherish the days I don't, I'm not living with pain and I'm willing to do it.

And the more we learn, and that's a great point there you're making, the fact that what works for some people doesn't work for others. And I think that's important because we have friends that what works for them doesn't work for you. So as you're going down this path with Lyme, It's important to understand that if it's not working, figure it, you know, try something else. If you're at the doctor and the morphine is not working, there's other options, there's other things. Unfortunately, there is not one, one quick fix to Lyme. It is too complicated for that. So where we're left at is we have to keep gathering information. Okay everybody, I hope you enjoyed that episode. Like I said, It was a hard episode to record, but we did cover some areas that we really wanted to. Just, you know, I just want you guys to leave with the fact that, you know, keep fighting, look for alternative methods, and if you've been in this fight for a while, you know, maybe it's time to talk to your doctor about long-term or alternative methods to treating pain other than prescription pills. Some of that information can be found on our website. You can hear Sarah's journey in her blog. It's there. Thank you for listening, and, and if you haven't done so already, subscribe. If you visit linevoice.com, you know, there, like I said earlier, there's a bunch of products that you can look at and possibly use. Also, there's a blog also at linevoice.com. There is a tab there, one of our pages that can link you up to our donate page. If you like what we're doing here at LineVoice and you want to support us, feel free to fill that out. I just want to leave you one thing. I heard a quote: Do not let your circumstances define your reality.

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 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 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 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.

From the creators of Lime Voice and Disappearing from Society comes a brilliantly simple idea, but this time it comes as a book. Imagine a world in which birds can talk like people. You'll get a bird's-eye view of life with Lyme disease as one bird family must unite to overcome the obstacles of life with Lyme disease. Guaranteed to make you laugh and cry. Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available Available today at Amazon.com.