Heal for Real
Heal for Real
Living With Lyme Disease: They Said Nothing Was Wrong
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In this patient spotlight episode of Heal for Real, Dr. Meg is joined by hhc+ member, Ashley who for over 20 years, was told nothing was wrong. Fatigue, joint pain, memory challenges, dizziness - dismissed, misdiagnosed, and left without real answers. It wasn't until Lyme disease and tick-borne co-infections entered the picture that everything changed. They walk through the testing, the treatment, and the tools, that helped her finally reclaim her health. If you've ever been told your labs are normal while knowing something is deeply wrong, this one is for you.
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Well, I'm so excited to talk to you today because that's ultimately why I feel like this conversation will be so helpful for people because Lyme is so rampant, especially in Connecticut and like the Northeast, but honestly, it's everywhere now. I know you're doing a lot of education, listening to podcasts, and are well aware, but people don't get the diagnosis that they need, and then they sit on those symptoms. Well, not intentionally sit on those symptoms, but have those symptoms for so long and then don't have answers and things get really, really challenging.
SPEAKER_03Yeah. Well, I mean that you just described my life right there.
SPEAKER_00So I know I jumped right into it, but we decided to test, right? And Quest was revealing.
SPEAKER_03Okay. Quest was positive. Um and yeah. So then we I think we just dove right in with the antimicrobials.
SPEAKER_00Okay. And then when did we decide to do the co-infections? Okay, I remember now. So that was like we did quest, we started treating, and then we plateaued and then we did some vibrant testing to look at the co-infections.
SPEAKER_03I think it was maybe almost a year later. I think it was that we wanted to see where your antibiotics were at. Yeah. And then we just decided to move to vibrant to see if it would tell us more. Yeah.
SPEAKER_00Which it did for sure. I remember, I think did you have every co-infection or just about? Pretty much. Yeah. So I think we covered my first question. What did your symptoms or when did your symptoms first begin and what were they? So you mentioned or I mentioned the the fatigue, you mentioned the memory loss. What else was kind of honestly like resistant to treatment?
SPEAKER_03What when I came to you, it was the memory loss and the fatigue. I'd been kind of searching for what was wrong for at least like 15 years before that.
SPEAKER_04Wow.
SPEAKER_03And now when I look back, it's all of those things were symptoms. I didn't know they were all symptoms for the same thing. Yeah. And they all, well, not all, but most are relieved and better at this point.
SPEAKER_00My God.
SPEAKER_03Because it's like the joint pain. Like I had joint pain starting when I was in college. Wow. So that's 25 years ago. Had back surgery, had hip surgery, never got better.
SPEAKER_00Wow.
SPEAKER_03That's significant. When I was in college, it was my my first year of grad school. I ended up like taking grad school pretty pretty much like from home in bed. And that was before you could take online classes and stuff like that. Yeah, had back surgery, didn't really make me feel any better. So then, like a year later, they thought maybe it was because my hip also had issues. So I had that, also didn't feel better from that. And so that's like one of the biggest things. Like I totally when I came to you was not thinking about chronic pain and it's gone. Wow. I don't I used to the whole right side of my body always hurt.
SPEAKER_00Oh my goodness.
SPEAKER_03For 25 years.
SPEAKER_00That's insane. Yeah.
SPEAKER_03It's wild.
SPEAKER_00Yeah. What a journey. And nobody expected thought Lyme. No. Or tick borne. No. For you it's so complex because it's not just Lyme. And I think that's something too that people don't really understand. That if a tick is sick, it's usually with other multiple things. Yeah. Multiple things. Wow. So that was a really long time for you to deal with symptoms.
SPEAKER_03Well, and then also I would say it was right around when my husband and I first started dating. I would get really, really lightheaded all the time. We we used to we joke around that it was my Sprite Zero phase because I never drank soda ever. And for some reason, Sprite Zero was like the only thing I could drink that would make me feel better. Yeah. And same thing. I went to the doctor, just like my regular primary care at the time. Yeah. She just kept saying, Nothing's wrong with you. Yeah. Basically, like it's in your head.
SPEAKER_04Yeah.
SPEAKER_03She um told me it could be fibromyalgia, put me on, I don't know, some medication, and it made me feel so much worse. Wow. Like I went from being super active to not wanting to do a single thing.
SPEAKER_00And do you remember what the medication was? Lyrica or Gabapetin or something like that, maybe?
SPEAKER_03It wasn't Gabapetin because I was on that for my back at one point. Okay.
SPEAKER_00Okay.
SPEAKER_03That sounds familiar.
SPEAKER_00I want to say that's in the same class that they use for more fibromyalgia, but there's some clinicians that will argue that that is an umbrella diagnosis when we don't really know what's going on.
SPEAKER_03Respectfully. She made like I was super active and then it made me not be. Like it was just like the wor the opposite of where I wanted to go.
SPEAKER_00Yeah. Oh my goodness. So you started seeing or seeking more like holistic naturopathic care. That was maybe like well, 12 years ago. Yeah, I was gonna say that's been a part of your life for a long time. And then I would say like the biggest thing was looking at hormones and seeing again, like DHEA was on the low end, but real no answers to that yet, right?
SPEAKER_03Well, it was like once I moved to naturopathic, people they would help me get better. But then what would happen is I would always go back. Like it was always like looking at the hormones, like helping from fatigue and things like that, um, digestive stuff. And I would feel a lot better. And then I don't know, a few months later, I'd be back where I started.
SPEAKER_00Yeah, you would slide back, have some relapses. We talked about doing testing. We did the quest labs, and I always talk about quests. We probably said this in a visit before I said it in a visit before that quests is like a jack of all trades, right? They test for almost everything under the sun. So when you're really trying to understand Lyme and get a better picture of co-infections, it's probably a better avenue to take going on a specialty or going with a specialty lab. So ultimately we decided to go with Vibrant America. We discovered more co-infections, we'll call them, or associated infections. And that's when we decided to change up your treatment. So prior to that, we were doing antimicrobials that were only Lyme specific, right? And it was like a rocky start. It was bad.
SPEAKER_04Yeah, it got really bad. You warned me though, and I feel like that was the only thing that got me through.
SPEAKER_03I remember being petrified to start that because you warned me so much. But then yeah, I felt like I had the flu the whole time.
SPEAKER_04Yeah.
SPEAKER_03Um, fevers, and would have to just like kind of take a break and just get through it type of thing.
SPEAKER_00We can pulse treatment, which I think we definitely did. But we had more of a Boreella focus in the beginning and then really didn't cover any of the other infections. So we got you. It's hard for me to gauge like percentage-wise, but you were feeling a little bit better. I would say we we would talk about like greater stretches of wellness, right? Which was a huge win for us. And then we started treating the co infections, and it sort of felt like we slid back again just because symptoms would happen. It was a lot. It was a lot. How did you feel like managing all of that? I know it was we did the tincture route, right? We did the tincture route, or we did the herbal route.
SPEAKER_03And we did the PK therapy.
SPEAKER_00Oh my gosh, let's get into all of that. Because we talked about early on doing your traditional antibiotics, which in some cases it's warranted. And I don't think it would have been wrong if we chose a traditional antibiotic, but you had an idea of what you wanted your treatment to look like, and I'm here to support you. And I probably would choose, not that this is about me, but I probably would choose the same route. Herbals are very effective, and you felt it. You felt the die-off that can happen with herbals. Yeah. How did you feel managing all of that?
SPEAKER_03It was a learning process. Yeah. Um, I remember back then um being in the heat helped a lot.
SPEAKER_04Yeah.
SPEAKER_03Um, and which is funny because now I struggle with being in the heat. But yeah, I that was when I was doing the sauna, obviously the hot yoga. That was helping me with the detox component, I'm sure. I remember just being so tired. Yeah. All the time. And different tired from like the Lyme tired. Just like I couldn't keep up with life.
SPEAKER_00Yeah. Honestly, I forgot we did the PK because that was like before we even launched all of the next level drips here and like the protocols. You were one of the first patients that we did them on. My mom did it and I was familiar and saw it in residency and all of that. But the reason why we chose that, right, is because that lipid complex helps to recover the cell membrane that would allow that transfer of waste out of the cell. Because that's what happens, is that these infections they attack and live intracellular intracellularly. That's a hard one sometimes. And or some of them do. And that's why you can be sick for a really long time. So with that treatment, it allows waste removal and you feel like garbage. And it's very taxing on the body. And you have to support detox with lymphatic drainage and with sauna therapy and staying doing the basics too, like hydration and sleep. And for a lot of us, that's really hard.
SPEAKER_03Yeah.
SPEAKER_00Especially when, you know, you have responsibilities. Yeah. But you were really putting your health first at that time. Yeah. You made like a conscious decision that, like, this is what I'm gonna be doing.
SPEAKER_03I was lucky at the time. Like it's funny how like it works out where my work was in a place where it was slowing down. So I was and my boss was very understanding of everything that was going on. So it was easy for me to kind of find ways to take breaks during the day or go for a walk. Walking helped a lot, like moving my body, getting outside, getting outside, always wanting to be in the heat back then because it made me feel so much better when I that is so interesting because you did hit a point.
SPEAKER_00I'm like, you gotta stop these hot yoga classes. I'm like, I don't know if this is helping.
SPEAKER_03I remember one day I'm coming for PK therapy and asking Arlene, like, do you think I could go to yoga right now? And she told me no, and I went anyway. I won't tell her. No, I told her after because I felt so much better after I went. Yeah. I went to like the back end of class. Okay. Um, I would sneak in after therapy and just lay on my mat in the heat.
SPEAKER_00Yeah. Yeah. So helpful. I remember I'm bringing it back to testing. I remember being almost like not scared to talk to you about your test results, but like, gosh, this is gonna be another long road for us. I remember feeling like, gosh, this is complicated. How did you feel when we talked about it? It must have been like a in one hand, it's a direction in answers, but then on the other hand, it's like a long journey. Yeah. Or a new journey for us.
SPEAKER_03I honestly I think because it's been such a long like when you go 20 years looking for something that's wrong for you with you, and then you find out what it is. I it sounds weird to be like I was happy because I was happy to find out that I was sick, but I at least it was something that I knew we could put together a plan. Like I trusted you so much. I just knew that we were going to put together a plan and we were going to figure it out. And I remember asking so many times, like, Am I always going to have this? Or it you is my blood sugar always gonna be off, or is this like, am I gonna have these permanent symptoms symptoms? And you would never say no, because obviously you have no idea, but like you'd make me feel very hopeful that I could get better.
SPEAKER_04Yeah. And that meant so much. Such a big part of my job. You gotta believe.
SPEAKER_00Yeah. And we've come a long way. And you're never gonna be anybody completely symptom-free. But the idea is that we have tools that work and we can rely on them. Let's talk about an AD since I'm here. So after we, and it's hard to say even after, because there might be a point that we cycle in herbals again for your treatment and your care long term. But we got through the, I'll say like the meat of your treatment with antimicrobials, and we've talked about how there is a part of the journey or the treatment that we need to use antimicrobials, right, to knock down that, we'll call it bacteria burden. And then we get to a point where it's like, let's support the terrain and the immune system, right? So we're looking at more like long-term immune exhaustion, we call it, or immune dysregulation. And I think that's where a lot of clinicians or some clinicians can go wrong in treating Lyme and co-infections is that they treat the bacteria for too long and they're not spending time on the terrain or the patient recovery or immune recovery. So we got to a point where I forget how you presented it, but you were you were hitting a wall with herbals. You're like, I need a break. I'm, I think your exercise resilience was not great, right? You weren't able to really enjoy yoga. It was becoming really and like gassing you, right? You were feeling worse when in the past going to yoga would like, and I'm sure it still does, but like give you life and be like the thing that brought you joy and happiness. And yeah, we got to a point where it was like, exercise, you didn't have tolerance. So we were talking about, or try to come up with a a plan to support that piece of it, right? And we we looked at NAD. And you started infusion therapy, right? We did a loading dose at first, and that enabled you, I want to say, even from like personal experience with NAD, it gives you more energy, more resiliency.
SPEAKER_03I was opposite.
SPEAKER_00Really? Yeah. Tell me more.
SPEAKER_03And I remember listening to your podcast with Marissa on NAD. And this was after I'd done NAD for almost like a year, I think.
SPEAKER_04Yeah.
SPEAKER_03And listening to it, I was like, huh, it is different for me. When I do NAD, I am exhausted for a few days.
SPEAKER_00Maybe it's too much too soon. Maybe it gives too much of a push to your immune system.
SPEAKER_03Yeah. And it's like I I will sit for like two days and like I know, like I plan when I'm coming in to know I can't do a lot after. And it's two-ish days, and then I'll start to. I wouldn't say it doesn't, it never gives me energy, like like I think it's supposed to, but it makes me feel normal, is what I would say.
SPEAKER_00Okay.
unknownYeah.
SPEAKER_00I like that. We'll take normal. Yeah. But also we have to be careful with dosing. So you probably do better with smaller doses, it sounds like.
SPEAKER_03Well, we had at one point gone to the subcutaneous instead of the doing the IV infusion, but I didn't feel that as much.
SPEAKER_00Okay. Yeah. Well, smaller doses, you're not gonna have that as big of a an effect. And then you also did your custom mineral infusions, which those seem to really help with recovery and resilience too. Yeah. Talk to me about that process.
SPEAKER_03Yeah. So we had done the micronutrient lab work. Also with vibrant. Yep. And I don't remember exactly what it showed, but it showed a lot of depletion. Yeah. Yeah. I think a lot of amino acids were depleted and air minerals. Minerals. Now it's I can tell when I'm just starting to feel depleted now and come in. I think it turns out to be maybe like once a month and do the micronutrients, the NAD and the amino acids. And then yeah, it just brings me back to life.
SPEAKER_00Yeah. It's all customized though, to your tiernees. And then we did do maybe was that the appointment we were supposed to go through your micronutrient retest?
SPEAKER_03Oh, yes. Or is that I did that with Dr. Molly when you were out, and everything pretty much resolved normal. Oh my god. I think there were like only a couple little like yeah.
SPEAKER_04That's awesome. From one year. Huge. That's huge. That's amazing.
SPEAKER_00I love IVs. I feel like they just, I don't know, quickest way to resolution. I think like you could take orals for sure. And you have, you did probably still take some supplements. Can we talk about what life feels like now? Like what your health and what your regimen feels like now.
SPEAKER_03Yeah. I feel like for the most part, most of my symptoms have gone away. Yeah. No more joint pain. The memory, like come kind of like it pulls in every once in a while, but not nearly as bad as the issues that I was having. I think my blood sugars regulated better now. I feel the most normal than I've in. I don't even think I knew what normal felt like to be. I don't even know anything to judge it against, to be honest with you. Um, I went back to hot yoga like two weeks ago. Okay. And in class, obviously not as strong as I used to be, because we took off what four or five months.
SPEAKER_04Yeah.
SPEAKER_03And at the end, during class, I was like upset with myself the whole time. You know, like I'm not as strong as I used to be. I can't battle, you know, whatever. And I got to the end and I was like, but I feel so much better. I've learned now to manage my time. If I know I'm going to have something big that I'm doing, I make sure I rest before and give myself a window after because I will crash still. You know, if it's like a a party or you're going to be like staying up late or talking to a lot of people, I will most likely like the next day spend it sitting on the couch just kind of like recovering.
SPEAKER_00Yeah.
SPEAKER_03Yeah.
SPEAKER_00That's okay to some extent. I love hearing that. And like we got Yeah, you're like you're like, get back in here so we can figure that out. But I think what I'm hearing is that it's an improvement from the past. Yeah. And maybe more resiliency now. Maybe it's less time to recover than the past.
SPEAKER_03Yes, definitely. Well, that I think that's part of it. Like now I know how to manage it a little bit too. But yeah, there have been times where just having a busy afternoon and I'm out for a couple days.
SPEAKER_00You need like a day off. Yeah. Yeah. Well, now too, you know your tools. You know what to fall back on, even if that's just rest or not making plans. But come and get an IV, get your micronutrients, maybe do some. Well, NAD is probably not the the best, but no, you're right.
SPEAKER_03Like I had a really busy, we had a busy weekend two weeks ago. It was graduation at the yoga shop for all the YTT um students. So it was seven classes throughout the whole weekend. And I was like petrified that I wasn't gonna make it through the weekend. So I came in here on Thursday before and dripped or you know, did the NAD and everything. And I guess it was Wednesday, because then Thursday I relaxed, and then Friday everything started, and I made it through the whole weekend. I even took a couple classes, and yeah. I wouldn't have been able to do that even like six months ago.
SPEAKER_00Yeah. What would you tell somebody that is kind of in your boat, if you will, that have these like obscure symptoms of memory challenges and some of the pain and fatigue? Do you do you talk about Lyme in like your circle? Do you what does that look like?
SPEAKER_04I like go get tested.
SPEAKER_03Yeah, like I try to start to be like, go go do this. But I tell a lot of people, like, have you thought about Lyme? Yeah, because I feel like it's one of those things where it's the people that have all these random things wrong with them, and people keep telling you nothing's wrong. Yeah. And it's like it something could be wrong. And if you feel that, keep searching and try Lyme tests, because Lyme is mysterious, like that. Like everyone has different symptoms, everyone feels different with it.
SPEAKER_00They really do. And I think too with Lyme, it's like, how do I say this? It moves, you know? Like your shoulder hurts, and then like it's totally fine the next day, and then your back hurts, then your knee hurts, and then the next day you're like, have another weird symptom with like memory. So it's they don't all these symptoms don't seem related. But then when you look up like what symptoms could you have, they're all it's they're all the list.
SPEAKER_02The first is like three pages long.
SPEAKER_03I remember it was like, yep, yep, yep, yep. Things that I didn't even think. And that's why it's like, yeah, go get tested for Lyme. Especially, I know Quest isn't as robistic and robust as vibrant, but at least it's a first try.
SPEAKER_00It's a good first try. I think too, what is something I'd really like listeners to take away is that Lyme is a clinical diagnosis. We talked about that, right? That that means that if you're presenting with all of these symptoms. Symptoms that are suggesting and point to Lyme, it's Lyme. And you treat it as such. And maybe you don't do doxycycling. Maybe you use herbals and use some immune supports, which maybe we can get into next. But it's okay to take that as a diagnosis, which I think is harder for people to kind of digest. Cause if it was an easy test of like yes or no, people would be treated better, I would say. But did we use that questionnaire? We did. Yeah.
SPEAKER_03And I tell people about that a lot. Yeah. Going back to your original question, like I was actually just talking to someone yesterday who was like, why is it all of a sudden like Lime's popping up everywhere? Yeah. And I was saying how the testing is there isn't really one test right now that tells you you have Lyme or you don't have Lyme. Totally. There's things you can do to almost find out that you have it if you test positive, but you could also correct me if I'm wrong, test negative but still have it. Absolutely. And that's where the big questionnaire comes into play.
SPEAKER_00Yep.
SPEAKER_03And if you have all the symptoms, then assume you have it. Absolutely.
SPEAKER_00Move forward with treatment. Yep. And then if you respond to treatment, that's also a good indicator that we're hitting the right bug and on the right path.
SPEAKER_03And that was really helpful for me.
SPEAKER_00Yeah.
SPEAKER_03Even though I thought it was horrible when I was on the biocyted of the lime core. I knew I was going to tell myself. Like it's good that you feel bad.
SPEAKER_00We're hitting the right bacteria. Yeah. Totally. Yeah. That questionnaire, I think, I think it's Horowitz is how you pronounce that guy's name. He's, I think he might be out of practice now, but would go to ILADs every year, speak at ILADs. He developed this questionnaire that you would essentially like, and you probably know more than me because you've seen it. Well, we both looked at it, but you filled it out. That you would rate your symptoms, right? On like a Likert scale. And then if you're above a certain threshold, it's like ask your provider about it, or like unlikely, likely, and then like 911.
SPEAKER_04Yeah. Like absolutely yes. Ding, ding, ding.
SPEAKER_00And you should seek treatment or like something like that. Yeah. That I would say arguably is more revealing because quests can be not as specific like you said. And then at the other, or the other piece of that that I wanted to make note of is that they I think they test for only one strain of Boreella, right? And there's like, I think there's definitely more than a handful.
SPEAKER_02Yeah, I was gonna say there's at least five. Yeah, maybe say 20.
SPEAKER_00So there's definitely more strains than Boreella, Bergdorfri that can cause illness. Yeah. And you're only testing for that one, I wanna say with Quest. I I I believe that I'm speaking correctly. And the other piece of this is that it depends on your immune system, right? So if this is more chronic in nature, you could look like an immune exhaustion and your body's not mounting a response. So we're looking for antibodies. So that's where you get like false negatives and on the other side of that false positives too, because it just depends on your immune system's ability to react. And that has so many limitations. So better to do the questionnaire, go off symptoms, and uh if you have any inkling just to treat and maybe use herbals. But and I want to say eyelads now too, they if you got bit by a tick, I I believe their stance is that it's less risky to take doxy than to wait because it's so caustic, especially not that you know, it doesn't necessarily matter with age, but with kids too, you know, like you better, you better, but I would think that you're better off taking doxy.
SPEAKER_03Yeah. That's what I've seen too. Because everything I've learned is if you if you can get it right away, you may be in the clear.
SPEAKER_00Totally. There are people.
SPEAKER_03There's a lot of people that died. Even who do doxy feel better, but then don't it's still chronic and dormant in their system.
SPEAKER_00Totally. Well, I think something that can happen too is that you could treat right for so long and it can like bring the bacteria burden down to a level, and then over time it can become more problematic if you didn't have a full treatment cycle that brings the bacteria burden down enough that your immune system can kind of take care of it. So we've seen that happen in practice. And then to your point, some people just don't treat because they don't know. They don't have the classic bullseye rash because a lot of clinicians are taught that that's the indicator, that's the symptom that says you have Lyme. Which I believe they're finding now that less and less people. Yeah. You're so right. And it's just it presents differently to everybody, really, like you said earlier. So yeah, I would take the doxy if you're questioning, or start an herbal therapy because it's not worth it's not worth the risk. If you did get bit though, I think we talked about this is less relevant to your case. But if if people in your life or the listeners got bit by a tick, we would encourage them to save it and send it in, right? Because you can send it to a lab, they test it now, and they can tell you if it has certain pathogens, and then that can give you an understanding of should I treat or not? But I think regardless, if you're following eyelads, which I would highly recommend, Lyme literate clinicians would recommend just to treat. You did you did decently well with herbals. I did. Yeah.
SPEAKER_03The last time that we did a vibrant test. Yeah. Most of my co-infections, I think, were in like this better.
SPEAKER_00Did we clear any? I should have looked at your labs before.
SPEAKER_03If I remember correctly, I had would 10 sound right? Like something around there of different co-infections. And then I want to say most went from being in that like high red zone to the yellow on that acceptable acceptable antibody levels.
SPEAKER_00Um your test was scary the first time around. I was like, oh gosh, I'm scared to not that I'm scared to tell you, but it's just a lot to digest. But like you said at the same time, it's it's a direction, it's answers, it's hope that we're on the right path.
SPEAKER_03Yeah. Yeah, and it worked. Like, I mean, I know I'm still not feeling 100% yet, but I feel 90% better. And I'll take my lab show that we've gotten most of it in control.
SPEAKER_00Herbals is not something that I was taught in school. So that was like a whole new journey for me to understand. And that's why I remember the I correct me if you remember it differently, but I remember seeing you, right? And we went through your vibrant test. And then I'm like, all right, I'm going to Boston for Islam. I'll text you if something changes. But let's start this for now.
SPEAKER_03Well, and then you came back and you had then I changed your whole plan because you had found out about Lime Core.
SPEAKER_04Yeah. And we changed to all of that.
SPEAKER_00Mm-hmm. Yeah. Mm-hmm. So I shared with you, but for listeners, I have a mentor that when I was training with her, it was like my first rotation. I knew I wanted to be in functional medicine, so I found her. She was advertising her practice in like the back of a magazine. I remember like ripping it off, being like, I want to work with this woman. And I like literally emailed her and like chased her down. So I started working under her and interning with her. And then I remember sitting with her during patient visits and almost like I don't want to say annoyed because that sounds like harsh, but I was like, not everybody has Lyme. Like it was almost like, why are we talking about Lyme with everybody? And then, like, come to find out, the more that I like trained and studied and went to ILADS, everybody has Lyme. Like, if you're looking for it, if you're thinking it and you look for it, you'll find evidence for it.
SPEAKER_03I do think so many people have Lyme too. A lot of people have Lyme. Yeah, in the Northeast as well. I have Lyme and it's like, oh, I do too, or my brother, or my friend's sister. Like everyone knows someone.
SPEAKER_00Yeah. And I think too, that story of like how much people struggle with it is not uncommon, also. She introduced me to ILADS, and then I would go to ILADS with her. I met Dr. Hinchy, is a clinician that develops LimeCore. And it's a very cool line, I'll say, of herbal remedies, medicines. They're all very specific. So you and I developed a plan, right? That we sort of cycled your treatment just so we can have some control of the variables that we treated Boreella first, right? Cycled that for 12 weeks. And then you took some time off just to let your immune system recover, give yourself some time to recover. And then we would treat the next co-infection. We did that for gosh, a year. I have some in my closet that's waiting to be started too. You're waiting for the right time. Well, I think there was a period right before I went out that I'm like, nope, you're not ready. Nope, you're not ready. You're not ready.
SPEAKER_03And then I think I took advantage of the fact that you weren't here.
SPEAKER_00I'll take a little hiatus from this. But yeah, we will get to a point where it's like you won't necessarily require antimicrobials, right? And it's more immune support, which is why we did alongside the ashwagandha and what other immune stuff. We tried LDN, LDNSA, for a little while.
SPEAKER_04Been on the LDL for a long time. Oh my gosh, that's cool.
SPEAKER_03That was a game changer. Was it? I didn't think like this tiny little pill was gonna make such a big difference. And that would that made big changes as soon as I started taking it.
SPEAKER_00That's so interesting. So for the listeners, low dose naltrexone, LDN. I also I probably shared, I'm like so open with you, but I took LDN for a long time too, like on and off. And I feel like it really helped me a ton initially. And then I kind of get to a point where I don't know if you feel this way, but I get to a point where I feel like my sleep is disrupted a little bit on it. And then I cycle off of it. And then I go back on it. I'm like, wow, why did I come off of this? This is so helpful. Like immediately, inflammation is down, mood is better. I wasn't necessarily dealing with chronic pain, but like people take it for pain management. What did you feel like? The same thing.
SPEAKER_03Yeah. I like immediately felt like I didn't have as much inflammation and pain.
SPEAKER_00Mm-hmm.
SPEAKER_03Mm-hmm.
SPEAKER_00Such an old drug, too. It's been around for a long time. It's used for substance abuse, addiction. But at low, low doses, it's been seen to be very anti-inflammatory. So you can use it in inflammatory, obviously, conditions, but then also it helps to modulate the immune system in in a um in a way that can allow your body to kind of catch up to the healing process, if that makes sense.
SPEAKER_03Yeah, no, it does. Yeah.
SPEAKER_00I gotta get back on that. I forgot about that.
SPEAKER_03That's like this magic little pill.
SPEAKER_00I know, I know. So we did the titration with you, right? You started the smaller dose and then you increased every two weeks until you're at like four or five. And traditionally, now truxone, I want to say it's like 25 milligrams or 50 milligrams or even more.
SPEAKER_03I don't think it's that much.
SPEAKER_00So you're on such a a micro dose that it just behaves completely differently in your body. We'll keep you on that as long as you feel like it's helpful.
SPEAKER_03Yeah. I feel like there's times where I because it's I have to go all the way out to Vernon to get it. There's times where I'm off it. Yeah. And as soon as I start taking it, I feel like I sleep so good.
SPEAKER_00It's so funny that everybody's different. Like everyone responds to things. I know that's been like a theme of this discussion, but yeah, I feel like for me, I'm like, oh, my sleep's weird. I gotta come off of it.
SPEAKER_03Well, you get crazy dreams on it.
SPEAKER_00Crazy dreams. I think that might be the reason I'm like, I can't actually emotionally do this right now. I need a break. I have like weird like ex-boyfriends coming in my dreams, and then like I'm running from things. I'm like, I gotta like husband break with me. Yeah, literally, like my husband's like with somebody else. I'm like, I gotta like, this feels too heavy right now. Yeah, it is wild. Like people, you're like, okay, yeah, like I can deal with a crazy dream, but these dreams are you can't even describe them. They're so weird. They're so weird. They're so weird worth it though.
SPEAKER_03But then I think to me that means like I feel like because I'm dreaming so much, I have to be sleeping well.
SPEAKER_00You have to be in like layers of sleep. That's like restorative. Yeah. I forgot about that. What other immune support did we do? So we talked about NAD, that is part of it. LDN you've been on, we said the ashwagandha piece has been part of most of the herbal remedies, right? Yeah. I did a lot of like the detox stuff, like the pectin. Yeah. That can be really helpful to we should talk about that because we did kind of scratch the surface on when you start antimicrobials and traditional antibiotics. Typically, you get worse before you get better. We've talked about like not starting a regimen like before a weekend or something that you wanted to show up for. I've said that a couple of times. Because you have a die-off reaction or a Herzheimer reaction, right? And I think I'm I think I have this right. Herzheimer was a scientist or a clinician that essentially coined that term Herzheimer. Yeah. I don't, I forget what his title was, if he was a scientist or a physician or what, but he was studying syphilis at the time, I think, and found this phenomenon will say that when you treat syphilis, that bacteria, it creates a die-off effect where you feel terrible. Truly like flu-like. And I think knee-jerk, you're like, this isn't like something's wrong. I don't feel good, or this isn't the right treatment for me. But what is happening is that you're killing off the right bacteria, that's a listening and immune response, and your body is trying to like figure it out. So for you, we use a lot of, we call them binders, apple pectin. You're on charcoal, yeah, GI detox for a while. That charcoal piece, I think it has like zeolite in there, also has a small amount of apple pectin in there. And that can help with reducing the severity of those symptoms. I don't think it takes them all away though. Yeah, it just kind of like rounds out the edges a little bit. So important. Yeah, so important to include those though.
SPEAKER_03When I wasn't taking the antimicrobials like this last, was it like January, February, where I was just feeling really slow and lethargic, and you had me start all of those up again without treating anything. And it made a huge difference.
SPEAKER_00Yeah. Sometimes you just need to support that facilitation, I guess, of waste removal and charcoal can be helpful, DLA, all of that stuff. The key like challenge though is that you're you're at risk for like mineral depletion because you can bind minerals and bind other things that you don't necessarily want to. So good on you that you're doing your testing and mineral replacement, because that can happen, that you can deplete someone of their minerals and then their detox capacity can be limited.
SPEAKER_04There's always like this pattern.
SPEAKER_00There's all yeah. There's always something. Yeah. So binders are really, really important part of that treatment. And you can use them with herbals or just without. If you're having a flare of symptoms, it's not a bad idea to cycle them in. You just have to be careful with the time and replacing minerals and taking a break and testing. You can't be on them forever, unfortunately. We've been down other paths of treatment too, and had a focus on hormones and still do. All of it is connected, but that's really been the the core of our work together is Lyme and treating you for col infections, which has been such a wild journey for both of us. I think we learned a lot from each other.
SPEAKER_03We did. Yeah. It has been a wild journey.
SPEAKER_00I'm so happy you're feeling better.
SPEAKER_03Yeah. Thank you.
SPEAKER_00When are we testing again?
SPEAKER_03I don't well, we I don't know if we've treated since the last test, to be honest with you.
SPEAKER_00Yeah.
SPEAKER_03Because I wasn't feeling well.
SPEAKER_00Yeah. Yeah. So we have to get you back on treatment too soon to test that. I know.
SPEAKER_03I um feel like I'm in this like, I'm not working for the next six weeks, but then do I want to enjoy it or do I want to take a look at it?
SPEAKER_00You want to enjoy it. No, you want to enjoy it.
SPEAKER_03You get settled with work.
SPEAKER_00I love you. Yeah. No, I mean, I live in the real world too. Like, I wouldn't want to start an antimicrobial right now, like especially before starting a new job. Like, you want to be your best self. And I think that's good that you are almost you have this flexibility almost now. Like before it was like you didn't have a choice, you know, like you were treating. You had we had to treat.
SPEAKER_03I feel like we always did though. Like I would almost say opposite. Like I always felt like there was this conversation around it. I mean, obviously, when I first posted, it was like, yeah, we need to start this right away.
SPEAKER_00Like we were like, okay, now we we have to treat eventually.
SPEAKER_03But now you're well, it's always been this like up and down. And depending on how I feel, what are we going to do? And maybe our plan will change because either I'm responding well or I'm not. And so it's been we never stuck to the what was it? It was gonna be like six weeks on, six weeks off. Yeah.
SPEAKER_00I don't think that every it never works that cleanly. No. But everybody's different. It worked. Yeah. You gotta I don't wanna say like go with the flow because that's so like cliche, but really you do because I'm not gonna put you through hell if it's not working, we're gonna make a change and bring something else in or drop something off. And yeah, it's been I would say like that throughout the whole time.
SPEAKER_03The other game changer, which I just realized I've only been on since you've left. Yeah. I might mispronounce this, but the Simorelin.
SPEAKER_00Oh my god, I forgot that you were on that. Yeah. Yeah, that's cool. Game changer. I can't wait to get on some peptides. Oh, honestly. Because I was pregnant. Yeah, you see. So I couldn't do anything. That's cool. I forgot that you were doing that.
SPEAKER_03My HRV is like back up to normal.
SPEAKER_00Oh, that's amazing. Yeah. Okay, so growth hormones secretologue gonna help with recovery, basically. And you're seeing that as evidenced by your HRV is up. So you're sleeping better, you're recovering better. How's your energy probably better? Yeah.
SPEAKER_03Like if kind of going back to when I was talking about last weekend, I was fine going through all of that. Yeah. I had a similar weekend for open house just in early May, I think it was. Toast after like a couple days it took me to come back and you know be normal. And the only change I've made is going on the Smarlin.
SPEAKER_00That's incredible. I love that. Are you cycling it five days too off? Five days on, two days off. Okay. Yeah. Nice. Treated you for Lyme coinfections. We cycled therapies for over a year or so, and still looking at some treatment coming up, we'll say. However, we spent a lot of time also talking about the terrain, right? And supporting your immune system and what you found to be really helpful for your journey. LDN, which you're still on, and then some oralin. NAD, it's in there, but maybe not as game-changing as some people respond to it. Um still feeling like it's worth it.
SPEAKER_03Yeah, I would never give up NAD. Okay. You're like, no, no, no, no, no. I just think it meets me differently than other people, is really what it is. Like, I don't get that. Like everyone else I've talked to, they immediately have tons of energy when they do it. Like mine just takes a little while to come in.
SPEAKER_00Okay, that's fair. Okay, so worth it. I'm still coming.
SPEAKER_03Yeah.
SPEAKER_00Don't get me wrong. I'm still coming. Okay, SMORIN, NAD, LDN. LDN. Zepatide. True Zepatide has been really helpful. Yeah, we're microdosing that one. And we do that a ton here. Use it really, really small doses or at small doses and helps with inflammation. So does SMORIN though. So them together is probably the cocktail that is most effective.
SPEAKER_03Well, yeah, we really brought down the TERS with the Samoorlin.
SPEAKER_00That's so cool. And LDN too. It's hard when you have all the all the good stuff. Awesome. Well, I'm excited to have you back. Or maybe back and see you. Yeah. I know. See you next. Miss you too. This is going to be so good. I really do feel like people need to hear about other people's stories, patients' stories, and know that Lyme is something that is, I don't want to say it's out there, but it's it's it's something that should be talked about more. And there's treatment options available. And yes, antibiotics and herbal antimicrobials are so important and a cornerstone, I'll say, or foundational to your treatment, but there's other tools that are available, especially through this practice or like practices that can really help with your recovery and your resiliency and your attestment to all of that.
SPEAKER_03I hope it helps people that already well helps people with Lyme, but also helps people understand people with Lyme more too.
SPEAKER_04Yeah.
SPEAKER_03Cause I think that's one of the biggest struggles is people think of Lyme just as like Lyme when you first get bit. Yeah. But not as this long chronic journey. And just to have empathy and understand that it's it can be a lot. It can be heavy.
SPEAKER_00It can be really challenging. Yeah. And it's one of those things too that like on the outside, right? We've heard this before. It's like you don't look sick. It's like, well, yeah, I've been struggling or I've been recovering for the last five days, or I've opted out of all of these things because I didn't have it in me.
SPEAKER_03Yeah. And to like understand that that's what someone could be going through.
SPEAKER_00Yeah. And to your point earlier, way earlier in the conversation, you said sometimes Doxy just does it for that person and they're okay. But the next person they can really struggle for a long time. Yeah. And knowing that that can happen, having empathy can go a long way. Yeah.
SPEAKER_03And when you're in it, knowing other people are in it.
SPEAKER_00Yeah. And outside of Lyme too, it's like don't give up. Keep searching. I think your story kind of speaks to keep testing and finding the right clinicians and the right team to help you. Because there's other things and treatments that are available.
SPEAKER_03Yeah. If you don't feel well, don't give up. Yeah. Take that as notice.
SPEAKER_00It's all in your head.
SPEAKER_03Face it. You one time, I remember in the beginning, this was before I was diagnosed. I was like, maybe I'm just crazy. Like maybe nothing's wrong with me. I will never forget this. We were in the old um office, and you like took my hand and was like, no, something is wrong, and we're gonna figure it out.
SPEAKER_00Oh my god, I just got chills. I'm serious. Yeah. Well, because you had all this like evidence, all this like obscure evidence.
SPEAKER_02But everyone kept telling me nothing was wrong.
SPEAKER_00Yeah. Oh my god.
SPEAKER_02You were the first person that was like, no, something's wrong.
SPEAKER_00Oh my god. I wanna hug you. I love you. Thank you for doing this. Sorry. Thank you for being flexible with me. Oh yours.