Happy Lyme disease awareness month! I am so honored to be joined by my Lyme experts—Matt and Rich—from the Tick Boot Camp for this episode. We dive into what Lyme is and all that comes with it.
This episode covers:
What Lyme Disease is
Common symptoms
Others factors that impact healing
The Lyme War and more!
Helpful links:
Trasncript:
C: Welcome everybody to the it goes without saying podcast I am Cass, your host and happy Lyme disease Awareness Month. That is right. It is May that means it's Lyme disease Awareness Month and boy oh boy, do we have a very special episode today. Today we'll be joined by what I like to call my two Lyme experts. Matt and Rich from the Tick Bootcamp podcast. If you have not listened to their podcast, you should as soon as you listen to this episode, I'm going to link it everywhere. So make sure you check them out, show them some love. And let's get going. Welcome, guys, thanks for being here. I am here with Matt and rich from the tick boot camp. What is up,
M: Cassidy We are honored to be here today with you.
R: I'm really excited to be here to Cassidy. I mean, we are now at our 170 of podcasts. And but for you, we would not have had the cool podcast that we have. I guess it was episode number two, Matt? Cassidy had found us and was kind enough to bring Dr. Nancy Fox to our podcast platform before anyone knew who we were. So Cassidy, thank you so much for doing that for us early on. And we're just blessed to be here with you.
C: I'm so so so, so thankful that you guys decided to join me today because you are what I like to call my Lyme experts. After 170 episodes of talking to people with Lyme that treat Lyme does have something to do with it. I think you guys definitely know the most. So in your own words, what is Lyme disease? If I'm brand new to the scene, what is Lyme disease?
M: So if you want, I'll start with that one, I know Rich probably will have a little bit different of an opinion than I do, maybe. But we've come to realize that Lyme disease is not just the borreilia bacteria that we typically associate with Lyme disease, we find that chronic Lyme specifically, is a combination of all the different things that can make you sick from a tick bite the viruses, the parasites, the bacteria, and then when you have a weakened immune system, the reactivation of other things you've had already like epstein barr, and then you have that pot boiling over effect where you become chronically ill. So I think many people sort of look at it as a, you know, single bacteria infection and, you know, kind of kill infection, but I think it's so much more than just the borrelia bacteria. I know Rich is eager probably to elaborate on that.
R: So I like Matt, Cassidy, I, I believe that Lyme disease is a multi germ infection. Or if we were going to use Dr. Bill Rawls, his description of Lyme disease, he calls it a poly microbial infection. And I think that's a better description than is certainly accepted in the medical community. But I think we have to look at it more than just what it is we have to look at what it does. And what it does is it causes multi system failure, but not just systems in your body, and it will attack every system in your body. But it will also attack every single societal system, it'll take your family, it'll attack the educational system, it will attack your employment, it will attack every single system that we have set up both physical system, the emotional system and societal system set up so it is a complex disease. Now it there's also two different types of diseases. There is acute Lyme disease, which of course, most people believe is this disease that you can remedy with a very short course of antibiotics. And then there is chronic Lyme disease, which is a very, very different disease. And unfortunately, because they both have the same name, there's a lot of confusion and a lot of bias that is created because we have these two very different diseases that are unfortunately, working under the same definition and the same name.
C: I love that how you say how it attacks everything because it really does like this, you get Lyme disease and it is everywhere. It is just a, I like to say it takes your life it turns it upside down sideways, horizontal diagonal, any which direction because that is what it does. It hits every single aspect of your life. That is the best definition that should be in a textbook. So how did you guys get into the Lyme game?
M: so I think Rich if you want to pick up on that one, this is actually our origin story that we tell on our podcast before we officially start every interview that we do, and we kind of have this I think memorized by now Rich right?
R: So Matt and I met actually, before Matt had Lyme disease, we had worked together on a political campaign and became friendly through that campaign. But we quite frankly, didn't have a whole lot in common in large part because I'm old and Matt is young. So after working on that campaign together, we we lost touch with each other.
M: Hey, Rich before before you continue, I need to share with everybody listening to Cassidy's podcasts are drinking game. So we have this unofficial drinking game on our podcast that every time Rick says he's old, we have to drink something. So everybody who's listening should grab a cup of water, a cup of tea, whatever you like. And ritual say he's old a lot and every time you got a drink, so just a fun little game he can play
C: I was gonna say you're not old.
R: Cassidy, unfortunately I am very old and and I want all of you to drink of course only healthy beverages when you play the the Lyme game that was created by actually one of our podcast guests johannah. So Johanna created the the tick boot camp drinking game because she decided she was going to have a drink. I think kombucha every time I describe myself as old so please enjoy your healthy beverage. So anyway Cassidy Matt I lost touch with one another for many years. And then I received a call from a mutual friend who shared with me that Matt was very sick that he had been suffering from chronic Lyme disease, he was out of work for over a year on disability. And she also shared with me that he hadn't been able to drive for over two years. And when Matt was required to return back t to his job, there were some unhealthy people who were targeting Matt and trying to get him fired from his job. And what she said to me at the time was that she wasn't so she wasn't interested in having me represent Matt, in my capacity as an attorney. She wanted me to help Matt defend himself that he was so sick that he couldn't defend himself. And she thought someone needed to defend Matt. Well, as it turns out, Matt did of course, need legal representation. And we got together for the first time in over, I guess, 10 or 12 years. And unfortunately, I was very sad to see that Matt was very, very sick. And as part of his part of representing Matt, in this job related action, I had to study Lyme disease. Now I was familiar with Lyme generally, because I live on Long Island and Lyme disease is endemic to Long Island. I was familiar with ticks and tick bites. Because I grew up on Long Island. I've been bitten by ticks many times. But Cassidy, I'm so old, that I was dealing with ticks long before Lyme disease had actually been discovered, at least a burgdorfer definition of Lyme disease. And I was actually more familiar with Rocky Mountain Spotted Fever than I was with Lyme disease. And I quite frankly, have to confess to you I didn't know that Lyme took a chronic form at that time. But I did study Lyme disease as part of representing Matt in his in his job related action. And the good news is Cassidy I'm proud to report Matt was able to keep his job. And I thought that was going to be the end of our arcs crossing again, because remember, I'm old, he's young, we wouldn't have much in common. Well, I, I was wrong about that. About three months after we finished working together on Matt's case, I was in my yard, preparing for my youngest daughter's graduation party. And at the end of the day, I took a shower and I was washing off the dirt in the mulch, and I discovered a large tick biting me on my leg. And although that wasn't a new experience for me, it was a different experience. Because I was now Lyme woke. And I understood how, how difficult my life would be if I were to suffer the chronic disease that I had come to understand and learn about the representing Matt. So I had an anxiety attack in the shower, I had more sweat coming out of me than I had water hitting me. I pulled the tick off my leg. I wrapped it in toilet paper, I finished my shower. And then I called Matt. And I said, Matt, I can't get sick. I have a daughter in law school. I have a daughter in a graduate school program. And I have a my youngest started beginning college and I made a commitment to pay for their education. And if I get sick the way you are as a you know, self employed small business owner, my kids are screwed. So what do I do? And Matt said, Well, Matt, what do you tell me?
M: Well, to be fair, I never found a tick biting me. And I really didn't have great advice from Rich at the time. I told him to save the tick and bring it to his doctor. I really didn't give many other adivce at the time so Rich was sort of a little annoyed. And like, What do you mean? What else should I do? I'm like, I don't know. Richh goes on from there.
R: So Cassidy I, I followed that up. I follow that up by calling my doctor's office. I followed Matt's advice, and I called my doctor's office and I asked for an appointment at my doctor's office refused to schedule an appointment, they told me that there was no reason for me to go to the doctor's office that I I wasn't I wasn't exhibiting any symptoms. So back and forth a little bit with the gatekeeper. And she told me that my doctor was too busy to see me that she had appointments that were at least three weeks out, and she would allow me to come in the following week to see the physician's assistant. So I went in to see the PA the next week I brought my tick with me, I showed him my tick, he handed it back to me, I handed it to him again, he handed it back to me and I said don't "Don't you think you should look at the tick? This can be significant in my in my treatment" and he said "no, you know, we're just going to give you doxycycline you know, for a couple of days, and you'll be fine." So I went home without a whole lot of confidence in the health care providers that that I met with, and I did what old men do. I went on to Amazon and I bought every book on Lyme disease. And I just recently counted the books. I bought 32 books on Lyme disease. And I read every single book. And what I did is each night I read a chapter and as I read a chapter, I would call Matt back. And this is how this is how we started to again, develop the friendship we have now, where we we would call that every night, I would read, I would tell him what I just read, Matt was still suffering from neurological symptoms, so he couldn't read. And we would then discuss how, how I should be developing an action plan to protect my health. Well, after 32 books Cassidy, I was more frustrated that I began, I did not have an action plan. So we then pivoted over to Google Scholar, and we downloaded all the scholarly material on Lyme disease, and tried to learn as much as we could from the scholarly articles. And we didn't quite frankly, get much satisfaction out of the scholarly materials, either. They were largely politically driven, we learn more about the Lyme wars than we did about how to come up with an action plan. And then Matt said, Well, Matt, well, Rich, I know you're old. Well, he's really didn't say that, I admitted that I was old. And he said, we should really turn to social media. And as an old man, Cassidy, I had no social media, I value my privacy. And I don't know why anyone want to look at me. So I certainly wouldn't put any pictures up. So I had no social media. But we started going onto social media. And much to my surprise, quite frankly, it was the first time where I was able to locate actionable information, people who had been on the journey, were kind enough to share their experiences. And that's where we learned as much as we could from any other source. So we discovered that the real experts in the Lyme disease community were not the people who were in academia, they were not the people who were at medical institutions or doctors offices. They are the people like you, Cassidy and Matt, who had gone on a Lyme disease journey. They were the real experts. They were the people that gave me actionable information. And that's when I first started to feel comfortable with taking the steps to protect my health. So to sort of tie up the story. I was being a good New Yorker, and I was whining one day about all of the things that we discovered about Lyme disease and the lack of actionable information. And Matt said, Alright, rich, stop whining. What are we gonna do about it? And I said, I don't know, what are we gonna do about it? And Matt said, well, you said that the real experts in in Lyme disease are the people who have been on a Lyme disease journey. Why don't we start a podcast where these folks could come on, tell their story, and make it available to other people on the journey so they can have models to shortcut the diagnostic and treatment journeys. And I said, That's brilliant. Let's do it. And that, that's what we did. 170 podcast episodes, like
M: As a quick side note. So in response to not knowing really what to do when Rick had his tick bite, we actually crowdsource and fast forward a little bit here. But we crowdsource feedback from all of our podcast guests. And we've developed our tick bite blueprint which is on our website, both rich, and I've used it and it's a step by step instruction, basically, on what to do if you get bitten by a tick somewhere, anybody listening, it is tick season, it is Lyme Awareness Month. If you are a bit by tick, we highly recommend you check out our website and follow those steps to ensure that you can take the proper actions to not get Lyme disease.
C: And we are all so glad that you guys went on this journey and created this podcast because it is so important to us being a Lymie to be able to share our stories, just being able to talk to other people. And I've been part of several support groups and stuff, but having an outlet to speak to other people and then hear other people that are sharing the same thing as you dealing with the Lyme wars, as you said, it is so validating to hear other people that are going through the same thing. So you know, it's not in your head as the society that we live in is trying to make us believe it is in our head. And that was one thing that I wanted to know what you guys, how would you describe the Lyme controversy to people that don't know about it, because that was the biggest thing for me because, like I live in Maryland, so kind of New York ish as we have a lot of Lyme. You guys have more than us. But we do have some so I had heard of it. But the same thing. I didn't know there was a difference between acute and chronic Lyme, I had never heard of chronic Lyme disease. And when I found out that I have Lyme, I can remember, I was so excited because I was like oh, I'll get on a quick dose of antibiotics. And then I'll be fine. and learned the hard way that that was not the case. And it wasn't until I started in on the chronic Lyme journey that I discovered the controversy that surrounds this illness that we live with.
M: So Cassidy from my standpoint, I was the same way I didn't realize that chronic Lyme was not widely accepted by the community. So when I got diagnosed, I was very excited. So I thought I'd be able to get treated, I thought I'd have recognition. But then I came to find that many doctors that I'd go see neurologists, rheumatologists, you name it, they would say to me, chronic Lyme is unreal. And it was sort of a shock even here in New York to hear that from people. So I had to find the right doctors that would work with me after getting diagnosed to get the proper treatment and to get the proper guidance and really go into self discovery journey which this this will happen to like I said years before working with rich and having to get represented. So those several year gap there between me getting diagnosed and then the formation of tech bootcamp. But even people that I know they're very intelligent individuales still, without doing research don't think chronic Lyme is real, because if you go to the CDC website, it talks about, I think they call it post treatment Lyme disease syndrome, which is a they call it a very rare condition. So and they and they very clearly state that chronic Lyme is not a real condition. So even people that are very smart and well educated, don't believe it, because these really strong powerful government entities are saying it's not a real condition. So it's a, that's a constant struggle from our standpoint, to educate people that this is a real condition, and that it is something that needs to be validated, and we need better awareness on and I think many of our guests, pretty much all of our guests have faced that same sort of struggle with family members, schools, you know, romantic partners, etc, accepting the fact that this is a real chronic condition.
R: So Cassidy I think there's so many different issues surrounding chronic Lyme disease that are unanswered at this point, it is clear that chronic Lyme disease exists. And it is clear from our podcasts which we we are booked out for almost a year at this point, we do two interviews a week. And at this point, we have so many people reaching out to us that we can't even keep a waitlist, because the problem is is so advanced. What is not clear is why it's not accepted, widely accepted. And you know, I certainly have some theories about that, which I'll share with you some maybe radical, but I'm, I'm happy to share that. Yes. And I think I think I think the first problem is Cassidy is I'm not sure that chronic Lyme disease is, is a an ancient disease the way it has been argued by some I think it's actually a recent phenomena. And the reason I think it's a recent phenomena is is really not a whole lot in the literature about the chronic form of Lyme disease, although there is some indication that acute Lyme disease had been observed long before Dr. Steer and Dr. Burgdorfer, you know, the two who are credited for at least making the the medical observations, first in Lyme, Connecticut, and then Dr. burgdorf are of course, examining the ticks that were that were that were caught by Dr. bonacci here on Long Island and sent to the center of the Rocky Mountain lab. The I think there was in the medical literature long before Dr. Steer was was describing the Lyme experience in Lyme, Connecticut, I think that I think there were observations about acute Lyme disease, but I don't think there were many medical periodicals that suggested that there was chronic Lyme disease until recently. Now, I believe that's because there have been a combination of events that have developed that are unique to our modern world. I think the first thing that's unique about our modern world is we're living in a high stress society. And Dr. Rawls has taught us that because we're living in a high stress society, the immune dysfunction in the immune disruptions that we are facing in in the current society is not something that that any humans have had to face in the past, I think we are less capable of managing the the Lyme bacteria. I think there's a second issue. And I think the second issue is, is is quite frankly, climate change. I think because of climate change, we are seeing a larger number of ticks than we had in the past, in part because the breeding season is longer. And in part because there's a great a great deal more of the earth that is habitable to ticks. And ticks are now of course being transported by birds to places in the world that they hadn't been, hadn't been in the past. But I think there's a third piece of this. And I think the third piece and probably the most controversial piece of my view is that i think i think Lyme disease is a bio weapon. I do believe based on my reading of the book bitten and our lengthy interview with the author Chris Newby that we did on our podcast, but I believe that Lyme disease is a multi Germ infection that was created in a lab. Now I don't know whether or not it was a bio weapon that was created in a lab in the US or it was created in a lab somewhere else but we certainly know from Ms.Newby's research that that the bio weapons research and the bio weapons project in the US was was in part was in part run by Dr. Burdorfer. Who is the person And who allegedly discovered Lyme and the ticks that were brought to him by by Dr. Binoche. So I think if you if you look at the sort of like this, this is a triangle where we have the immune disrupting events in a modern society, which are weakening our ability to manage the the bacteria. If you look at the you look at climate change, and the proliferation of ticks, and you look at this multi germ infection that our immune system is having difficulty managing. When you look at that triangle, I think that's why we have a very different experience now than probably at any other time in human history.
C: I mean, I have two things to say one, if you have not read bitten, and if you have not listened to the tick bootcamp episode with Chris Newby, you should do that now. Because that book and just you're like, blew my mind. I remember, I gave the book to my grandpa, because he's kind of like, if he was some things. So I gave it to him. I wanted to see his reaction to it. And he was like, that made me think about things. I said, Yeah, I know, it makes you think about things. And I totally agree with what you it's a bio weapon and all that. But one thing that I also agree with, like the stress management, I remember at the beginning of COVID, some article came out about like, why some people were more susceptible to it and stuff like that. And it had to do with like the stress management and that kind of thing. And I agree like, our society that we live in, is so so high stress that your body just can't manage it. And that is with me with my paralysis is they think that it was my body's way of like man, like they're too much the stress the conversion disorder with it, which caused that to happen when your body is so brought down in the mental aspect. We know how much that can affect you physically, that it just is going to get chronic. I didn't know that about the literature not showing the chronic infection, though that long. So that is very interesting. I'm learning something new every day, like we were talking about earlier. One thing that I'm interested with with 170 episodes, is there a pattern that you guys have found that people with Lyme like on their journeys, like a certain steps that they kind of take in the journey as they get through this,
M: Yeah, ya know, the one thing Cassidy that we have observed at a high level, as far as a pattern to success with people with Lyme disease, and specifically chronic Lyme disease is the people that are afraid and paralyzed, obviously don't have success, and there are many of them. So the ones that are sort of stuck, or have accepted where they are in their healing journey. They're there, they're going to stay where they're at, or they're going to get worse, the people who have the faith to move forward and do their own research and try new therapies and to do an analysis. They're the ones who generally get better. And we've seen people try. I mean, you name it, every single treatment under the sun, and they get better. You know, they have setbacks, they try things that may make their health decline. But ultimately, they keep fighting and fighting and fighting and they get better. The other piece to it is something that I as a Lyme warrior have been realizing more and more over the past year is you have to heal emotionally. And I think Cassidy, we were talking offline a little bit about the trauma associated with Lyme disease and some of the horrific journeys we've had to go through with doctors and hospitalizations and the way we've been treated by the medical community that leaves these traumatic scars, and if we don't address them, that's going to inhibit our healing. So it's something that I personally have had to think about and process and overcome. And many of our guests that have healed physically have also indicated they had to heal emotionally to reach remission. And without addressing both components. It's we've I don't think we've seen anybody read who's actually reach remission without addressing the emotional and the physical component of Lyme disease.
C: Yeah, I think it's definitely a huge thing. And but I think for people with the Lyme journey, it takes you getting to a certain point, at least for me, when I had to be like, okay, something else has to change here. And I've definitely gone through like the, I'm going to be sick forever. This is where I'm going to be mentality and stuff like that. And it was like you have to be your own advocate in this, especially with the controversy surrounding it and not having doctors believe you're not having, like medical staff leave you in any sort of way. You have to be your own advocate, you have to fight for it. Like Richard keep handing the tick back to them saying test this test me helped me, I am here, there's something wrong. But you also have to work through that. And you look at that and say Holy shit, like, that's not normal. People shouldn't have to go through that to get better. And so that is just yeah, agree. Both.
M: There's also another piece that we've been observing a lot lately is some people in the community are afraid to get better. And I know that sounds so weird. But personally, again, I can reflect on my own experience. And we've had others share with us that they can relate to this, that you it becomes your identity, right Lyme and illness becomes your identity. And you use that as a crutch or you use that as as a as a way to justify your failures. You're not making progress. And if you start to heal, you don't have that crutch anymore to blame on. I can't go and graduate college because I'm sick, I can't succeed and get a job because I'm sick. And people get stuck because they're afraid of actually getting better and it sounds so weird, but it's actually more common than You'd think and once people get like you said, Cassidy to a certain point in their journey with have that realization, they realize that they kind of holding themselves back a little bit because they're not taking the proper steps because they're afraid to get better. And it's a weird thing. But I think it's way more common than we think in the Lyme community.
C; That's so interesting that you bring that up, because I have always made that like observation. Why are there more because I have my support group, which has over 530 people now in it, I like let in a whole bunch of other people the other day. Thank you. Thank you. And I would say that out of the 530, it's not even 100 of them are men. It's all women and things. And I've always wondered, I'm like, why is it because men won't talk about it if they are sick? Is it because they're just not getting sick? Like we are? Is it because they actually someone tells them that that tells the doctor that they're sick, and they treat them and believe them? So I think that we should run a study and figure this out together, guys, because it actually is mind blowing to me that why is it all the ladies? We're all like, sure, we'll talk about it. But it would be nice to have some men on this. But one thing that you just said, Rich, which you said symptoms, symptoms that are going to come up? What are the symptoms that you guys have found, like the most common because I know for me one time I had someone explained to me Lyme disease, and they said I want you to take any medical book that you can find take all of the symptoms for every disease that you find in that medical book, put them in a list together and then just write Lyme disease on top of it. Because that is what you would get with Lyme disease. What do you think?
R: Well, Matt is our symptom guy so I'm gonna let him take that that question.
M:mI think the most common symptom that we get on the podcast is extreme fatigue, which is why chronic fatigue syndrome is a number one misdiagnosis along with fibromyalgia as a misdiagnosis from chronic Lyme disease. But I mean the spectrum is pretty wide so the people that don't have neurological symptoms, they experience anything from fatigue to muscle pain to muscle soreness to you know, you name it, but then they it can it can be as you know Cassidy and as I know it can be neurological where they have seizures, hallucinations, balance problems, vision problems, you know, they have hearing issues, they have cardiac issues. I had I had for First time cardiac issues when I had Lyme disease, so Lyme can literally affect every organ in your body. And I know somebody who had almost underwent heart surgery for it. We know people who are not able to walk there and wheelchairs because of Lyme disease. So it really can create such a wide variety of symptoms. But there are some very common ones, which are the ones I just mentioned. And, you know, seizures, paralysis, it just the list goes on and on and on. And Rich. Can you think of any others? I'm kind of trying to blank with the the list here?
R: Yeah. So I think it's important for your listeners to understand that Lyme disease is described as the great imitator that it can take a lot of different forms. But one of the one of the patterns again, to answer one of your earlier questions, or bring one of the early questions into this answer is that almost universally, with the 170 people that we've interviewed, they've had very severe symptoms. They've got too many doctors, they've taken many diagnostic tests, and they've been defined as a medical mystery. So I think one of the clearest indications that you have Lyme disease is when you're going to traditional doctors, and they're telling you, they can't figure out what's wrong with you. Or they, Gaslight you and tell you, it's all in your head. So that is sort of the number one pattern that we've seen, in our experience, there is a diversity of there is a diversity of symptoms. And and there are, but there are some patterns that you see. And I think one of the best ways of getting a definition of the symptomology is to go to the My Lyme data program at Lyme disease. org. You know, that's a patient driven polling tool that that Lyme disease org use. And they showed the list of symptoms that a majority of people have fatigue being the number one, which is all almost exactly what we've seen as well. But there are many others that are defined. So if I were going to if I were going to look for a tool to if I was pre diagnosed with Lyme, and I had some some questions about whether I had Lyme disease, the two things that I would do is I go to the my Lyme data. And I would take a look at the symptoms that the community has developed as, as general generally presenting a Lyme disease. And I would also use the use the tool that if I'm feeling sick, and my doctor is is either gaslighting me and telling me it's in my head, or I'm going to many doctors, and I'm saying taking diagnostic tests, and they're they can't define what's wrong with me, it's likely to be Lyme disease.
M: And also there's the Horowitz questionnaire as well, which many of our guests have been diagnosed through that. So Dr. Horowitz is one of one of the top Lyme doctors, I think, in the world probably. And he came up with a symptom questionnaire that many people can take. And it will, it will basically tell you the likelihood that you have Lyme disease from the questionnaire, and then after that you can follow up with with testing, potentially a lab like Igenix to get some more accurate testing for Lyme and co infections. But Cassidy Another thing you would necessarily read about the Lyme debate. And one symptom I neglected to mention is the autoimmune component for people with chronic Lyme. So I had a scare a few years back where I had my ama levels are off the charts, I was feeling horrible. This is actually right, I think when we started tick boot camp, and it was just a really, really awful experience. And they ran every single autoimmune test in the book, they diagnosed me with lupus and I said it wasn't lupus and all they knew is that my ama levels my my autoimmune antibodies were off the charts. So of course, I started researching and found that autoimmune disease is very common with late stage Lyme, and many people call it actually Lyme, Lyme, autoimmune. And as early as just a couple of months ago, there was a study out of the UK that definitively proves that the Lyme bacteria will alter your immune system causing an autoimmune condition. So they're starting to find more and more than all of these these autoimmune diagnoses. I mean, there's a whole bunch that we've had our guests on the podcast discussed that I can't even pronounce, but many of them I believe, are related to chronic Lyme disease and the bacteria altering your immune system. And that only compounds the problem, right. And now, many people in the Lyme community, especially these leading doctors are arguing is it persistent bacteria? So is it persistent borrelia in your system causing you to be sick? Or is it an auto immune complex as a result of the bacteria keeping you sick with chronic Lyme? So that's a debate we've heard a lot as well. And personally, I think is a combination of both. But that's that's another debate that we hear often is do I still have the bacteria or is it auto immune? The bacteria can never can never be eradicated or it can be eradicated. It's another debate. We hear a lot.
C: Yeah, I have two things to say. I've literally been writing stuff down as you talk because you know, Lyme brain, I'm gonna forget what I wanted to comment on. But so one thing was that you're just getting Rich that you have like if they're gaslighting you or if you're being treated and like it's not working. For me, I always tell people, if you're sick and they keep treating you and you're not getting better or you don't make sense or they're trying to put you as a square Like, was it a round peg in a square hole? Then you have Lyme disease is what I say on when I was at the Dr. Nancy Fox on the Lyme tour like we'd be speaking. And I would have little kids come up to me and they'd be like, like I had this issue in somebody that were like their parents were there and talking to us about these things. And like this one woman who was our contact at the place had her son, and she was telling you how she used to have to drive him to the emergency room, because he actually had Oh, my gosh, I can't think of it the one with the red meat allergy. Oh, yeah. AlphaGal. AlphaGal? Yes, he had AlphaGal. And really, like she knew it was from a tick. And then he actually was caught. She was like, after hearing your story, he has these other symptoms that you've been talking about. And I just didn't know. And I'm like, she said, they told him that he had fibromyalgia. And he was nine, he was nine years old. I remember that. And I was like, I think that we need to talk about Lyme a little bit more with her answer. So that is what I tell people if you don't fit, or I'm have talked to people who have know that they had had acute Lyme years prior. And they're 20 years later, and having these weird issues and things again, and they're like, no, they can't fit anywhere. doctors aren't really helping them. And I'm like, you should look into the Lyme more because it could have gone dormant and come back out again. Which gets what you were talking about Matt with? Is it still the infection? Or is it the other issues, and I've always been told that Lyme was an autoimmune disease. So I didn't know that it wasn't like a I've always taught people like I have an autoimmune disease. And I was one of those people that did get mis diagnosed with an autoimmune disorder with ankylosing spondylitis. That was one of the ones that I was diagnosed with. And I think that one thing that also because of that was the testing. So that's what I wanted to bring up next. That's the next thing I wrote down. So with you talking about your ama levels and stuff like that, what have you guys discovered my Lyme experts with the testing for Lyme disease and how that all like brings into this story.
M: I think the first piece to that is no Lyme test. If somebody says they have a definitive 100% accurate Lyme test, they're lying, they just point that's my belief. And if you exhibit the classic symptoms of Lyme, and as you said, if you if you're trying to fit a round peg into a square hole, then you probably have Lyme, and a doctor can diagnose you clinically based on your symptom presentation and treat you clinically. So I think that's the first piece of that. But the second piece is when we just had a guest today, and I myself was tested for Lyme came back positive, and the doctors don't even tell you that you have Lyme disease. So I had a positive test in the ER, and it wasn't positive enough. So they didn't tell me that I have a positive test beta guest today who's whose infectious disease doctor ran a test came back positive, they never told that our guest then later on, her therapist asked for her records, her therapist got the record and said you have very positive line. So the second piece of that is, even if you get tests don't trust the doctors, unfortunately, ask for copies of your bloodwork and look at it yourself, because there's a good chance that maybe it's going to be positive, and the doctors are ignoring it, which is far more common than I would ever thought it would be. And then, as far as here testing the standard, like labcorp. And quest is really the first you know, covered by insurance level of assurance of testing. If that works, you got a positive test, great. But if you don't, it's an antibody test. So what it's doing is it's looking for antibodies that your immune system develops to fight off the Lyme bacteria. And the sicker you are, the less likely your immune system is actually functioning the way it should and generating the antibodies. So it's almost it's almost like the sicker you are, the less likely you're going to test positive for Lyme. Now they have test which are called PCR tests, which look for the bacteria of the plant, look for the DNA of the bacteria in your blood. But the problem with the PCR testing is that the volume of the borrelia bacteria in your blood is far less than other illnesses and other bacteria that you may have. So the sample set of blood that they draw may not have the DNA of the bacteria in it, because it's not so widely distributed throughout your system. But a small amount of the bacteria can still make you very sick. It's something we've learned. So with that being said, the most common labs that we've seen, being used in the limelight or community number one is probably the pool definitely has to be igenex out of California, then probably number two, I would say would be Armand labs. I think it's out of Germany. Then we've also heard people use fry labs. And I forget whether it's in the States, I forget where in the states fry Labs is another lab. It's very popular and used for wind testing. And then some Alternative Testing is things like bio resonance, which is more like frequency testing, which, honestly when we first heard it seem really like woowoo to us, but there's been a lot of people we've interviewed that had great success of bio residents and energy healing and entry testing. So we're of the opinion of whatever works to get you diagnosed and treated. If you're feeling better. That's the most important part. So I'm gonna shut up and let Rich dumpings I know I was rambling so
R: So Cassidy, and Matt, you aren't rambling. I think that was very well done. I think you forgot DNA Connections is one of the one of the well known labs that folks are using as well. I Stony Brook University out here has its own line test. But I think the problem Cassady is twofold first as Matt said, there really is no line test that is 100% accurate. In fact, the accuracy levels are very low even with the best tests. The second problem, unfortunately is is there's no testing to determine whether or not you are responding positively to the treatments that you're either taking or, or you're being given by your doctor. So there's two different levels of testing problems. One, there is no no test that is particularly good. And two, there isn't a way of testing whether or not you're improving based on the treatment protocols that you have. Now, I want to talk a little bit more about the first test. And the problem with the first problem with testing is, is that remember, Lyme disease is not one, it is not one strain of one bacteria, it is a multi germ infection. In fact, the number of germs that are being spit into you, when you are being bitten by a tick could be over 200 germs, yet the the number of bacteria, viruses and protozoa that are being tested for is very small, I think it's seven at most. So one of the challenges that we have is we have a bad definition, medically of Lyme disease, it is one strain of one bacteria, rather than many different types of bacteria, viruses and protozoa. And the tests that we have, do not really do a great job of finding that one strain of that bacteria. So we have a huge problem, both from the standpoint of testing to determine whether or not you have Lyme disease objective testing, and there's no testing to determine whether or not you're improving based on the treatment that you receive.
C: Yeah, I think that is a huge thing. So thank you guys for explaining it so well, because there's so many people that are like, well, I got tested for Lyme, and I didn't have it. And I got tested for Lyme seven times the CDC way, and I didn't have it, but here I am nine years later. So like it just I don't trust any blood tests at this point. Like at one point I want to ask when we started with the endometriosis stuff. I went and asked my doctor to do to test my hormone levels. And she was she said, No, I'm not she was like, it's not even worth it. She told me she said the hormone tests aren't accurate at all. She was like, I have a patient who has the craziest things I've ever seen. And her hormone levels say she's fine. And so I just I have never trusted any blood worker. I don't trust the medical system to be honest with all this. But another thing that I just wrote about that we have not discussed yet. So you talked about the blood test. And I think that is so important for people that are just starting off. And the other thing I hear so I hear people say, Oh, I tested like I didn't test positive for Lyme. But I also hear I didn't get a bull's eye, or I did have the bull's eye. So what is it from your guys 170 people do you have like a statistic of how many have had a bull's eye rash
M: and Cassidy but I'm sorry, one thing I forgot. That's an important part. Many Lyme litter doctors will also run a cd 57 tests, which are the killer cells in your body. And again, the Lyme war thing comes into play because many doctors will say that's not really an accurate test, you shouldn't do it. But many Lyme literate specialists will say it is a good test to see if you have you know a high count of these killer cells with a cd 57 cells. And if so that's a strong indicator, you have Lyme disease. That's sort of a side note from the testing arena. And the bull's eye rash. We just interviewed somebody this morning. And again, she found a tick bite. She she went out with her life and said I don't have Lyme disease because I get the bullseye rash. It's a very common misconception. And if I had to guess I'm gonna take a stab at this first and see what you think. But I would think 10% at most of our guests had a bull's eye rash. With what what do you what do you think about that?
R: I think that's I think that's probably true. But remember, part of the problem Cassidy is that we're mixing up acute Lyme disease with chronic Lyme disease, right? So so the bullseye rash is not an indication that you are going to get chronically ill or that you're not going to get chronically ill. And that's really the bigger challenge here. The the in most cases. And I think it's important for us to talk about virility for a moment. It's one of the things we learned from Dr. Rawls, and, and the Lyme bacteria on the virility scale, meaning our immune system capacity to have software that will will identify and kill that, that bacteria is actually not very high, meaning human beings have been coming in contact with ticks since they've been humans, right? We've, you know, ticks are millions of years old, we have found evidence of ticks that are millions of years old human beings in some form, or millions of years old, and we've been coming in contact with ticks for the entirety of our existence. So because we've had regular contact with tick storing our existence, and Lyme disease during our existence, we generally have the immune protections that will protect us from the Lyme bacteria. So if that's true And the question is, why are people getting chronically ill? And I think the answer to that is probably that triangle that I had outlined for you earlier, where we have immune disrupting events that are making it more difficult, that we're getting many, many germs in us. And then, of course, we're getting many germs in us, because it's likely that it was designed for us to get sick as part of the bio weapons research.
C: I love it. Good stuff. And so speaking of your triangle on all the things that are added into it, the one thing we haven't talked about is the other layers that get added on so we have the other tick infections, and we have mold toxicity, we have mthfr, what are the ones that you guys have seen the most as well for those things? And how do you think those play into our healing journey once you have Lyme, or even like the diagnosis journey as well,
M: I think mold is a really important factor. Because once you have a compromised immune system, once you if you have chronic Lyme, you probably have a compromised immune system, you're more susceptible to mold, mold illness. So if Rich has a healthy immune system, and I have a weak immune system, and we're in the same room that has a high level of mold, I can become very sick and rich won't get sick at all. So that's why we're seeing people that live in homes with their families getting very sick, and their family members aren't because they're already compromised due to the Lyme disease. And we really couldn't truly appreciate this until we interviewed Michelle Michelle, we're gonna butcher her name, which Michelle McEwen who is who runs the Lima cancer services, she gave us a very detailed outline about mold and gave a specific test and I can't remember them off the top my head. But if you if you listen to our podcast episode or DM us, we can we can send you the information there specific tests to see, number one, what are you is there alignment is there mold in your system. So there's a test you can perform. See if there's mold in your system, then there's a test you can see is there mold in my home or my workplace. And then based on that they actually match the mold spores to the proper binders and medicine to actually help you overcome that mold illness. So it identifies where the mold is, you eliminate the source of the mold, and then it helps you bind and remove the mold and a sports from your system to be able to overcome the illness from mold. And that's just one piece of it. But we've seen so many people get even sicker because of mold exposure on top of Lyme disease
R: So Cassiyd, I look at mold a little bit differently than Matt has just described it. And what I mean by that is I think either Lyme disease can have an impact on your immune system, a compromised immune system and make you more susceptible to mold or mold can compromise your immune system and make you more susceptible to Lyme disease, right? It can happen either way. And we've seen that in our podcast where we have people who are healthy, they find themselves in a live environment because they rent their new apartment aboard and bought a new house. And then all of a sudden their Lyme disease takes off. Well what happened is the pod boiled over to us doctor rolls his metaphor, and it's the it's the mold exposure that caused the pot to boil over and their immune system can no longer manage the Lyme disease, and then vice versa. So there's another thing I do want to point out Cassidy and I and I want you to be cautious about this for your listeners. And that is that I'm sorry, my dog is barking in the background. But um, and that is I don't think we should be down on testing. Generally, Lyme testing is not accurate, although it does give us some insight. But there are many other tests that we should be taking right in man. And it's nice that we sort of tripped over into this with the with the Lyme arena. But there are many other tests that you should be taking in. The average person knows more about their car's health because of the gauges we have on our car that we know about our health. So we shouldn't be aggressively testing, we should recognize that there are going to be limitations to the test. And matal probably talked a little bit more about some of the things we've learned from the different types of tests and the DNA analysis that have been done on the test that will give you more and more insight into you know, what you should be doing to successfully treat this chronic illness.
M: I think a good example, just to kind of finish up that point is last summer, I prophylactically asked my doctor for a tick borne illness, tick borne disease test, and I wasn't feeling bad, ran the tests, and I came back overwhelmingly positive for Rocky Mountain Spotted Fever. So we caught it early enough before I was even symptomatic. We treated it and I also did some of you I did use antibiotics. And again, it's a personal choice. But I used antibiotics in combination with strong herbals to boost my immune system and modulating my immune system and drinking things like kombucha and things like that for my gut health. And I never got sick and I took CBD oil to work with a lot of people like myself getting nauseous from doxycycline I would use CBD oil. And it wouldn't make me nauseous. I would use some herbals and astragalus to boost my immune system. And I never got sick. I overcame the Rocky Mountain Spotted Fever because we caught it early enough. So if you ask your doctor especially if you live in a tick endemic area like Long Island or New York or wherever you may be, it can't hurt to get testing often because you can get had something before it's too late. And before you even symptomatic, potentially,
C: That is so I say like, I don't do the blood tests and stuff. But I had the same experience with throughout the nine years like I've had so many of like the testings and things done. And that is how we found out that I had Rocky Mountain Spotted Fever as well, that is how we found out that I had anaplasmosis, and the chlamydia pneumonia, like at random times, throughout my whole journey, those would like randomly pop up positive. And we were like, okay, like you, then there's no really way to know if I got reinfected or if I had had it, and it was just showing up at that point. And that also, is how we found out about the mthfr, which was do the blood test. And then I remember talking to you guys about this about the other testing that I had done with the DNA stuff, which is a huge thing without actually having a conversation with someone about this yesterday, because that is how we found out that I had with mthfr, I've been doing bt b 12 shots. And because that's like one of the things is supposed to counteract the mthfr, from my understanding, and nothing was happening, like for over a year like stabbing myself twice a week with the shots and noticing no difference. And once I had that DNA testing done, we found out that it was because I have another gene mutation that makes it so my body doesn't activate the B 12. So like, that was a whole bunch of wasted money, and a whole other part in our healing process. Like, okay, we rolled that out now. So now we can go in a different direction, which is also the testing that I've been having done recently for my gut issues and stuff like that, like, I know, I may not find things. And I'm trying to learn mentally, how to like process, that trauma of having so many tests on when people tell you that it's not there, and you're like, is it in my head, but at least you're ruling things out.
M: And Cassidy I just pulled that up, I still have bookmark from our interview probably almost two years ago, now that you were the one you were the first person who taught us about the mthfr gene and how to test for it. And I and I still we tell all of our guests this who asked about it, the 23andme testing, and I think it's it's the 199 package, not the $99 package, but it goes on sale for $99. We look at this often. And then you get the results from the from the 23andme. And then you run it through the live well a website who actually will interpret it for you and let you know what genetic deficiencies you may have. And then you can use that data with your Lyme literate doctor to determine what you can do to overcome those genetic deficiencies and help your body heal. So that's a really important part. And we have to thank you for that, Cassidy, because you told us about that.
C: I'm so glad Yeah, that's actually another that through that whole process was how we found out that I had an actual gluten intolerance. And so that was like a bit like within my like DNA and stuff like that, which is also when like, my mom eats pasta, and she's like, Oh, my stomach hurts. I'm like, Mom, it's in my DNA. It had to come from somebody, it's probably you. But so I always like that, that kind of testing, I think is a super big important process, through your whole healing process, finding all those underlying issues, because the mold also hit me as well, when I never had thought of it that way Rich about like the mold, then triggering the Lyme. And I think that is kind of what happened to me with I was doing okay, like I was in remission. I like never like to say that I was some superstitious but I was in remission, and then went away to school. And then that mod there was what then triggered the lime to come back out and stuff. It wasn't the lime in the morning. It was just so I think all of those things. But what about Have you guys had issues with heavy metals? What have you found with those issues? Because like, I don't understand the heavy metals, things I know I was tested for it and had them. But like no one really, I had like tungsten and weird metals that people like didn't know how I would get them. And I don't really think we ever did anything about it.
M: So heavy metal toxicity is something we've been very interested in lately. We actually interviewed Freddy Kimball last week, who is brilliant. And we asked him very detailed questions about heavy metals. And if you listen to that podcast, you'll hear even more, I'm sure I'm gonna miss some things here. But he talked to us about depending on where you live, and again here specifically on Long Island, New York, our water is very contaminated with heavy metals. So he said your drinking water is one way you can be exposed to heavy metals. And it's sort of like what the mole the sicker you are, the more immuno compromised you are, the less you are gonna be able to tolerate these heavy metals and process them out of your system and detox them out of your system. Right. So as as people who are suffering with chronic Lyme, were more susceptible to it. And what he recommends is there specific testing for it and I just can't remember what it is. And really the the binders is all different types of binders you can take once you know what heavy metals in your system, you have to find the right binder to help pull that out and bind those heavy metals and get them out of your system. And then he even recommended specific water filtration systems that can help clean your water and that's just one example even mentioned, you know that I think it was originally gonna swimming in a lake right there was there was high heavy metal content in this lake you're swimming in. And then like he was like really sick and it turned out this lake were like contaminated. So it's crazy how when you're sick again, rich and I swim in that same Lake Rich can kind of manage it, I can't I get sick, right. So there is testing for it. And there's specific binders for specific types of heavy metals in your system. And the one thing we've Learn from Amanda and cristalle. And their podcast interviews. binders are a great tool. But you have to be careful with the timing of when you use them. Because binders will pull everything will either it'll pull a lot of things, right. So if you're taking other medication and other supplements, if you take binders, surely after within a few hour window, other medication, it can actually be making that that medication ineffective. So you have to time your medication properly. So when you take your binders, they're not pulling out the good stuff that you need to keep in your system from other medication and supplements. So that's another another deep topic, but we'd highly recommend to listen, everybody listened to the Freddie Kimmel episode, wherever you look him up on Instagram, he has a ton of informational posts on Instagram about heavy metals and how to test and how to manage heavy metal toxicity.
C: So the testing that I had for heavy metals was like a pee test, and you had to collect it for hours and hours, it was so gross. But that was the heavy metals testing, you said you didn't know what test was. But with the timing of the binders and things I was on charcoal and chlorella, we would alternate for years. And this is when my mom had to create me, I had a color coded chart. And it was because I had to take like it was three hours in between the charcoal from any other medication, which when you have to take medicines, four different times of day, it runs into a problem of trying to figure out when to be able to take the charcoal and not have it draw out all the other things at the same time. So the timing of that is so important too, because I was I'm I'm that person that I like to try to just cheat and to take them all like one time and just not worry about it. But they're like No, sweetie, like, that's going to cause you more issues. In the end, you're not going to be doing anything. So timing, if you're using charcoal grill or any other binders, big thing. And one other thing, live other things that we're gonna talk about too. But one thing I wrote down earlier, was money. So what have you guys, because I run into people that they like that they just can't accept that it's not going to be covered by insurance.
M: Rich, you. Do you want to tell the Freddie Kimball story?
R: Yeah. So obviously, there are going to be many modalities of treatment that are not going to be covered by insurance. And because there are many modalities or treatments that are not going to be covered by insurance that may be helpful to an individual on their life journey. It can become expensive. And one of the things we learned from this brilliant young man, who we call the Lyme polymath because he's just so brilliant on so many different levels, is that he was able to heal despite being too sick to work, and despite not having enough money to do a whole lot by just being resourceful, right. And what he did is he made a decision that he was going to get better. And he made the decision that he was going to get better despite not being able to work. And how he did that was he put up a wall in his apartment, and he rented it out as an Airbnb. And we think that's sort of a really good model for someone who over the course of two years, rented to over 400 people so that he'd have enough money to do what he needed to do in order to be able to heal. So resourcefulness is really the most important factor here. And although money is needed, it shouldn't be an excuse for for not being able to treat and treat the way you need to be treated. Because you know, your health is a basic human right, and the system is going to fail you. But it doesn't mean you have to fail yourself, you can be resourceful. And you can come up with other ways of treating yourself. And we've seen a lot of creativity from a lot of our guests. So for example, when we had somebody who didn't have the resources for hypothermia, right, what she did is she'd she'd go into her pool during the winter time and she would you know, she would reduce her body temperature. And we had a lot of different people come up with a lot of different resourceful ways of getting to the treatment they need that they needed in order to be able to be helpful. So what we you know, what we want to emphasize is a couple of things. The first is you should certainly should be using your health insurance. To the extent that it's available to you, there are some companies that will that will represent you and assist you in negotiating payments from your insurance company. For off the shelf treatments the Lyme disease What is it? What is it the
M: are you talking about the medical bill gurus with Daniel enchant?
R: yea, medical bill gurus is one company that we interviewed on our podcast where they will help you but if none of that works, that doesn't mean that you're not going to be able to heal and it doesn't mean you're not going to be able to get the the treatments that you need. You're just going to need to be resourceful the way Freddy wasn't way many of our other guests have been where they've used their resourcefulness and they haven't allowed the lack of resources to prevent them from gaining their basic human right, which is their health
M: as soon as they might my favorite one is we we had a questionnaire for a podcast recently and in their treatment, they listed hot tub therapy and what's hot tub therapy, right and it was their creative way of their lawn litter doctor said lawn doesn't like heat. So if you can, you know, get hypothermia do this or do that. And they just resulted in taking really, you know, hot, really hot baths to help, you know, decrease the Lyme bacteria. And they listed it as a treatment with their Lyme litter doctor. So there are creative ways to do alternatives to like, you don't have to go to Germany to get hyperthermia, if you can't afford it, there are other alternatives you can look at. And then other ways to make money like rich described with Freddy. So we've seen a lot of creativity in our guests and ways to both afford treatments and also sort of hacks to get to similar treatment, but not have to go to the full extent of travel to get that treatment,
C: I think it's important to note that I found, at least for me, like, reassuring and everything was when I read Yolanda Hadid's book, Believe Me. And when she was describing, and she would like put at the beginning of chapters, I think, like how much things cost or like, where she went for all these treatments and things. And she would put like a waste of money, a waste of time, like this is someone who has the means to expend all that money to get better. And it wasn't even working for her. So I like that always made me like feel a little bit better, like, okay, it's not just because I'm poor and can't do this. It's just because this is a hot mess. And it's hard for everybody to do it too. So I think that was a big thing for me when I was like, Okay, I don't need millions, it would be nice to have the millions of dollars to treat it, but I don't need it. And also, I think it's, um, lLyme, what's the one that they provide people with? funds?
R: Well, there are many foundations that are available as well. And that's sort of part of the resourcefulness that we're talking about, right? If If, if you don't have the resources available to you and family aren't able to help you and you, you know, you, you don't have an apartment that you can, you know, that you can divide and run out partially, there are many other sources of money available to you. We've had we've had folks who have had GoFundMe pages, where they where they've had money made available to them, we have had many people apply, you know, for foundational grants from places like liblime and other places where you know, there are so it's really a matter of just being resourceful because if that trait will go again, talk about patterns of success. The people are successful Cassady are the people who are resourceful, not the people who are wealthy, like, like Yolanda, the, not the people, you know, who are who have every, you know, Doctor available to them. It's the people who are resourceful, the people who believe they're going to get better, and they'll do anything it takes to get better, and they'll pivot, and they'll pivot, and they'll pivot, they're the people that succeed. Having money is not going to be a guarantee to success. In fact, I could argue to you that it probably would be an impediment, because although it's a shortcut, it's a shortcut that's putting you in a position where you can rely on someone else. And quite frankly, the only people that know our bodies are us, we have to, we have to become our own advocates, we have to trust our feelings, because they're signals to us, we have to trust how we are responding. And we have to ultimately know when it's time to pivot, it's not going to happen through any testing, it's not going to happen to a relationship with a doctor. And it's not going to happen through some guru who's going to now just save you. It's going to be you becoming your own advocate, trusting your own emotions, trusting your own feelings and becoming resourceful. That's how you will ultimately heal
M: And some of those Lyme foundations Rich mentioned the Liv Lyme Foundation, but there's also the Avril Lavigne Foundation, the Lyme light Foundation, there's a similar name foundation called the Lyme Fight foundation. And there's also another one called the Lyme treatment foundation. So if you go on the internet and go to Google or social media, and you just type in Lyme disease grants, you'll see a ton of nonprofits that offer grants. And we've had many guests receive grants from these entities and be able to afford their treatment that got them better.
C: Yeah, thank you for the list Matt because It was Lyme Light was the one that I was thinking of. That's the first like Lyme disease group that I ever knew of was Lyme light Foundation, because I had seen many of people in my support group that they have helped out over the years. So always can do that. Well. I don't want to waste any more of your time here. But one last thing I wanted to ask you is if you if someone came up to you right now on the street, and said that they thought they had Lyme disease, what is the one thing that you would tell them? Like the one thing
M: Now is this they just got diagnosed with Lyme disease is, you know, I?
C: Yes, yeah. They just got diagnosed with Lyme disease.
M: I would tell them to book an appointment with Dr. Rawls for a consult because we think I think he's brilliant. And if I got reinfected, he'd be the first email I've made to get a console with him and go on. Probably a combination of antibiotics and herbals is what I recommend. And again, it's gonna be a personal decision, but that would be my advice.
C: I like it. What about you Rich?
R: So Cassidy, it would depend on whether or not it's acute Lyme disease or chronic Lymedisease
C: Chronic Lyme,
M: It's a chronic Lyme podcast, come on.
R: If I'm if somebody came up and asked me what I would do, I would recommend That they find a way of merging both Eastern and Western treatment modalities. Because I think if you are, I think if you are painting yourself into one box or the other, you're going to lose an opportunity to have a very rich merging of medical modalities and treatments that will be available to you. The second thing I would probably tell them is that they should be prepared to emotionally manage the doubters in their community. Whether it be there, their doctors, their family members, their, their, their co workers, their, their, their fellow students, that a part of this journey is going to have to be have to include gaslighting from other people who are not mean, we're not who are not trying to hurt you. But I just don't understand what chronic Lyme disease is. And they're not going to unfortunately, believe that you're sick, and you shouldn't allow that to impact your healing journey.
M: And I'm sorry, one last thing I would want, I would explain to them what a herxheimer reaction is because I did not know that. And I wish I didn't know what a Herx reaction was. It also explained the importance of a very diverse detox protocol while you're treating because detoxing is super important. And that's something that I think I wish I would have known again, when I was first diagnosed that I had a proper detox protocol as well.
C: While we're here, do you want to tell everybody what a herxheimer reaction was because I also had no clue. In my family, but we call them horcruxes, because I like Harry Potter, but like another Horcrux down.
M: So I think the simplest way we describe it is your you know, this is how some people travel, you're good, you may and probably will likely feel worse before you feel better. But I think that in a simple way to describe why that happens is when you kill off the Lyme bacteria, and we believe many other bacteria and viruses as your body starts to kill these things off in your system, this dead you this dead bacteria sort of makes you toxic, and you have to be able to purge that and you have to do it. That's why detox is important. And the faster you can detox, you know the the less herxing you'll have. But the the more aggressive you kill the bacteria, viruses, parasites, etc, the more you're going to have inflammation and die off in your system that has to be eliminated. And while that's happening, you're going to feel a little bit worse. And I think Richard could probably expand upon that, as far that.
R: Yes, so Cassidy. My understanding of what's happening with a herxheimer reaction is that when you have all of the dead bacteria and viruses in your body, your immune system is still reading it as active. And because your immune system is still reading is that active it is it is continuing to attack it. And of course, we've learned a lot about cytokine storms and hurts and hurting in the COVID Arena, which is actually what's causing people to die. It's a cytokine storm. That's because we blot die, which is an overreaction of your immune system. So the reason you're going to be in a lot of pain, as a result of, of having all of this dead bactrim in you that you haven't been able to yet detox or remove from your system is that your immune system is continuing to react to it.
C: Thank you for the explanation. This is why you guys are the Lyme expert. Thank you guys so much for joining me today and sharing your knowledge with the world and the five people that will listen to this podcast.
M: You're gonna have way more than five people Cassidy and it's truly been our honor. Thank you for having us.
C: Thank you guys.
R: you're a blessing in our lives. Cassidy we're always always happy to talk with you and please keep up the good work you're going to bless many many people through this podcast
C: Right back at you guys. I can't wait to hear Episode 200. I just learned so much make sure you follow along the tick boot camp on their journey here learning everything we can about Lyme disease and all that comes with it. Thanks so much for listening. Make sure that you subscribe to the podcast follow us along at Instagram Facebook at IGWS podcast, check out the website leave a comment or review. And the song for this Lyme disease Awareness Month episode is drumroll please. Rachel Platten I don't think of it. There is another song that describes the Lyme community as well as the song because even if we can't find heaven, I will walk through hell with you. That is what we are us Lymies here. Have a lovely day everybody and we will see you next time. Bye
Comments