Episode Transcript
[00:00:01] Speaker A: Welcome back to Integrative Lime Solutions with Dr. Carl Feld. I am so excited about the show that we have ahead of us. We have some phenomenal information that could save lives. I am Dr. Michael Carlfelt, and with.
[00:00:16] Speaker B: Me I have my co host, Tanya Hobo.
[00:00:19] Speaker A: You're going to need to tune in to what's going on today. The information is impact, so, yeah, don't step away.
[00:00:29] Speaker C: So excited. Let's go ahead and get this started.
Welcome to Integrative Lime Solutions with Dr. Carl Felt. And today we have a kind of a tag team as our guest. We have a mother and daughter, Dorothy and Rachel. And when Rachel started her journey, she was just a teenager. And not only is it hard to go through Lyme as an adult like I was, I can't imagine doing it as a teenager. And then she was brave enough to journal her whole journey. And with that journal, they turned it into a very raw memoir of her life and her journey and her mother being her caretaker and her mother and all of that. And then also her mother is the president of Lyme disease, which I'm sure all of these listeners are very familiar with that organization as they've been around forever and they do some amazing. So I'm super excited to have you guys here and to hear your journey from the patient, the teenager, the mother, the caregiver, and everything in between. So thanks so much for joining us and thank you.
[00:01:50] Speaker A: Thank you. Dorothy, I'm curious, did this organization, was it born out of you helping your daughter? Is that what kind of gave the initiative for it? Or were you already that's how I.
[00:02:04] Speaker D: Got involved with it, but no, it's been around for more than 30 years. It's been through a couple of name changes. The organization, when I first joined it, it was called the California Lyme Disease Association, but it's been Lyme disease for, I don't know, ten or twelve years now.
[00:02:24] Speaker C: I was going to say with the new name, that was a long time ago.
You've been around the block a minute.
[00:02:32] Speaker D: So the organization has been around for a long time. And then I got involved with it after well, they helped me during when I was struggling with Rachel. They sponsored online support groups before. That was really a thing the way it is now, and in person support groups and other kinds of things like that. And they were very helpful to me. But, I mean, I hadn't heard of them before we got involved.
[00:03:06] Speaker C: And your story is a lot like other people's. How many people changed their whole career after they went through Lyme disease and they're now into the health field or advocating for in some way giving back to the Lyme community and if anything, to the outsiders, that should speak volumes. That why are all these people that going through Lyme, like, turning and giving back to the community? Because that is how tough of a disease it is to navigate through, and there's just not enough awareness and advocacy and funding, and I could go on and on and on and on. But we appreciate what you're doing for the community. For sure.
[00:03:48] Speaker D: Yeah. Well, thank you. Well, Rachel, maybe you can say what happened on March.
Was it twelveTH?
[00:03:56] Speaker E: Yeah.
Do you want me to tell you how our story sort of began?
[00:04:02] Speaker A: I would love to. So March twelveTH. Which year?
[00:04:05] Speaker E: So March twelveTH, 2005.
I was a year round soccer player and I was in a soccer game. And for a few years at this point, my knees had been a problem and they'd been hurting a lot when I ran, but I was still pushing through it and able to be in a competitive league. But then on March twelveTH, 2005, I fell and I sprained my wrist. And that simple thing turned our entire life upside down. And within a couple of weeks I was on crutches, not due to my wrist, but due to knee pain just exploding. And then a couple of weeks later, I was in the wheelchair. And then I was in the wheelchair for the next three and a half years from Lyme. So it was like that one fall just sort of catapulted us into Lyme, sort of taking over my body. We didn't know it at the time, and that would take many months of going to doctors to figure out.
[00:05:02] Speaker D: Well, like a lot of people, whatever your first symptom is, you go to the doctor and they tell you something else.
And we got to a point where we were really wondering.
A neighbor of mine actually said, you know, I know somebody with a similar situation, and it turned out to be Lyme disease.
I didn't know anything about that. And I went into my computer and did a Google search for Lyme disease. And I thought, well, it sounded like it in some ways and not like it in other ways. And I thought, well, I'll ask the doctor about it. And that was my first experience with the doctor, really being hostile to the fact that you mentioned the words Lyme disease. I mean, I didn't know anything. I mean, it would have been like you would have said, could it have been polio or could this be diabetes? I didn't know it was a charged thing. And I said, could this possibly be Lyme disease? And the guy practically threw us out of his office and it was like, whoa, that's weird. And then she did eventually get tested, but we didn't realize that the tests are really, shall we say, suboptimal.
We had to beg for a Lyme disease test. And it's like, okay, you got one. But it's negative, so we know it's not that.
And it just descended from there. And like, a lot of people just have the experience. I later learned that a lot of people have the experience of being denied by their doctor, by the CDC, by insurance companies.
[00:07:05] Speaker C: Anyway, sounds like kind of the typical which a lot of people go through not knowing anything about Lyme or thinking it's just a disease that dogs get, which is what I thought for years.
And then, yeah, who's to say? If somebody hands you a test and it says you don't have it, we just believe you. We didn't know anything other but, yeah, we certainly learned the hard way going through this journey that you don't take anything at face value.
[00:07:35] Speaker A: And a lot of times also you have the doctor say, well, I'll give you a couple of weeks of doxycycline and you're healed. And you're healed, and if you still are symptomatic, we know it's not Lyme in your head. Yeah, we already fixed it with the two weeks doxic cycling as a mother, and then all of a sudden having the doctor just going irate just because you happen to mention a trigger word.
How did you respond to that?
Where were you guys'next step, what was happening?
[00:08:17] Speaker D: Well, there were a lot of things happening at the same time. She was in the 7th grade at the time, and it was near the end of the school year. I mean, the injury was in March, but this was dragging out getting towards the end of the school year. And she was in a wheelchair but going to school. But part of her issue was that she was just in intense pain.
It wasn't that her legs wouldn't move, it was that she was in such pain she couldn't put pressure on to walk. And one thing was you had to go in order when you're at school, here you are in a wheelchair. Well, everybody's supposed to take PE, and you can't get out of PE unless you have a doctor's signed note. And when we tried to get a doctor's signed note so that this child in a wheelchair didn't have to go to PE, they said, oh, well, there isn't any reason why she can't be in PE. And we said, well, she's in a wheelchair. And they said, but we didn't prescribe the wheelchair. See, we had just gone and gotten the wheelchair at a wheelchair store, rented one because we were trying to get from one place to the other and she couldn't walk.
There were difficulties on the school level, there were difficulties on the doctors. And we kept pushing. We kept pushing. And she ended up being admitted to a pediatric pain program at a hospital. And we thought, oh, they'll get to the bottom of this. And they didn't. It's a short version, that's a couple of chapters of the book, but the short version is that they didn't get to the bottom of it and we were left on our own. And so the computer and what was then called California Lyme was an online support group that was sponsored by at that time, the California lyme disease association, now lyme disease. And I finally found people online that had similar kinds of situations, and it was know, lyme disease. We still weren't sure that that's what it was, but that got us moving in that direction. And eventually she got tested by eugenics and other kinds of things, and we got to a limelighter medical doctor, which got us moving in the right direction. But that wasn't a magic solution, either. It wasn't like, oh, two weeks and you're done.
Not by a long shot. But one of the things that was really happening at that time was and as I think a lot of us know now, that lyme disease can really give rise to a lot of mental health issues.
And so rachel was really dealing with her falling falling apart and being in pain all the time and having a mother that was always wanting to take her to yet another doctor.
There was a lot going on.
[00:11:53] Speaker A: Rachel, how did you experience this this whole time? I mean, what was going on in your head? What were you feeling? What were you thinking? And here you have your mom is doing all of these things.
What was in your world during this time?
[00:12:13] Speaker E: Well, it was very confusing, because before we got the lyme diagnosis, like she said, I was inpatient at a children's hospital for five weeks, and they finally came to the conclusion that I was just making it up. Like everything was just in my head. I just wanted attention. I wanted to be out of school and out of soccer and just, why not? And so that's what they were saying. So it was very confusing for me, which was pretty cool that I documented all of this in great detail in my journal, talking about how upsetting it was as a 13 year old writing this, that I'm telling these people I can't walk on crutches, my legs hurt too much. But they were just saying, like, no, you think that you're in pain. It's really not there. And so it was very confusing and left me just feeling a lot more doubt and a lot more just being I didn't know the term at the time, but being gaslit, saying that I was not feeling what I was feeling, so that really fueled the flames for everything to just kind of fall apart.
[00:13:20] Speaker C: Oh, I can't even imagine. So, like, going back to what your mom said earlier, when here you are at school in a wheelchair around all your peers, and they're arguing whether or not you have to do PE, whether or not you should really be in that wheelchair.
I don't even know what to say sometimes. Right.
It's mind blowing what we go through. But how did that make you feel? Did you go through the loss of some friends that thought you were the crazy person or the weird person? Because I know as an adult, we kind of do learn who our true friends are, especially when we don't have that diagnosis, when we just say we're sick, but we have nothing to back up those words. Do they believe us or do they not believe us?
[00:14:12] Speaker E: Yeah, well, that was actually an extremely hard part is when you don't have the label, what do you say? And what we chose to say was it was a soccer injury. And so we just kept beating that horse that it was a soccer injury. And all of a sudden I'd have new ankle problems while being in the wheelchair. It's still a soccer injury. And we just kept saying that because I had no language to explain what was happening. Every day something new hurt. 1ft hurt, the other foot hurt. Now my wrist hurts. Now my back hurts. Now my shoulders are so hypersensitive that they can't be touched. I had no idea what was happening. So we just called it a soccer injury.
But yeah, school. Thankfully, I didn't have that much left of school. And I was extremely lucky that I had wonderful friends that I still have to this day. And so school ended and then over this summer is when I went to the hospital and then everything blew up. And then shortly after that, I wasn't in school anymore because I was bedridden and in a hospital bed in my room and just completely away from the world, just entirely. So school ended up not being a big issue on my end. I know my mom had to deal with the school officials, but from my point of view, like I tell people, I dropped out of school in 8th grade because at that point we never really went back to normal school.
[00:15:36] Speaker C: Wow. Well, and I like the idea of the soccer injury. At least you have something, right? Because that really, honestly, is where it kind of all started.
But I'm exactly like you when I was working in one day and I'm like, I'm not going to talk on the phone today. My elbows hurt so bad I can't hold the phone to my ear. And then the next day I come in, I'm like, I'm going to be at my desk all day today. I can do the phones, but I can't walk. My legs are really hurting. I thought it was your elbows that hurt. Well, they did. That's what hurt yesterday. Today it's my legs that hurt. And I had nothing to back it up. And they just thought I was just this crazy female who didn't want to do her job. I don't know. But yeah, I wish I would have thought of some injury thing or something. Right.
[00:16:22] Speaker E: An injury that keeps growing and more things.
[00:16:25] Speaker C: Yeah.
[00:16:26] Speaker A: And I'm curious because here you are as a 13 year old, you have doctors, they're authority figures. You have all these different authority figures that are telling you that you are essentially lying and essentially what you're experiencing is not the truth.
How do you deal with that as a 13 year old?
I don't even know. Because you're used to that you have these authority figures and you follow them and you trust them, and they are the ones that kind of guide you along, and here they're doing this to you.
[00:17:04] Speaker C: Yeah. And did you ever doubt yourself? Did you ever get to the point where maybe it is all in my head, maybe nothing's wrong? Did you get there?
[00:17:15] Speaker E: Yeah. There's so many times in my journal where I'm just like, is this me? Am I just making this up? I mean, they planted so much doubt and then just made me kind of just question reality entirely. And so to answer your question, you say, what do you do when that happens? You become extremely depressed and suicidal, which is what happened in my case, because it just after that, you can kind of look back at the calendar and see, well, that's when you went to the hospital. That's when they started telling you that you were making it up. And then it's just a solid downward trajectory after that. And it just ended with severe depression.
[00:17:57] Speaker D: And Rachel really ended up having cognitive problems too, and memory problems. And there was one time that we mentioned in the book that I was reading her story, and I set it aside and went to make us lunch. And I came back and we ate our sandwiches. And then I said, well, let's read the rest of this story. And she didn't even remember. She didn't know what I was talking about. I thought she was kidding. She was acting like, what story?
Whatever the name of the book was. I've never heard of that book. And there was another example of where a couple of friends stopped by and brought her a little green teddy bear as a present. And she talked to them for a while, and she had the little teddy bear next to her bed. And then she dozed off and she woke up from her nap, and she called to me and she said, mom, where did this teddy bear come from? And she had no memory of that. And there were other occasions when I would tell her something, and then a few minutes later, I would make a reference to it, and it was clear that she didn't remember what I had said at all. She had no memory whatsoever. And so this is at the same time that the school was hounding you, that they should be sending a home teacher and all this kind of stuff. And it's like she could read a paragraph and then not remember that she read it, and it was just there were real cognitive issues going on. And now we know that there was something that came out just a couple of days ago in the news about some big study that was talking about all the cognitive problems with COVID There's certainly other infectious diseases that result in cognitive problems, but there just seemed to be no recognition of that in our experience until we finally got to somebody that knew what they were doing relative to Lyme disease.
And it's just very hard. It's very hard. And when you're in the middle of that, as speaking as a mother, when you're in the middle of that, you think you're the only person this is happening to and that this is the only child that this is happening to.
And one of the things that is supportive in some ways and also horrifying, is when you realize there's a whole lot of people in that same situation.
And it's just that it's crazy that so many people have been so isolated and have been denied care on such a profound level.
And so in this book, which I'm not sure we've said the title of the title is Finding Resilience a Teen's Journey Through Lyme Disease.
But it's like that this is our story, but it is emblematic of what a whole lot of people are experiencing. And I think that the fact that so much of the book is rachel's young teenage voice is really important because it gives voice to the children that are experiencing this kind of thing. And so often we hear more about the adults. And even if you hear that a child is sick, you don't so often hear the child's viewpoint of that experience.
And so really, this journal is a pretty remarkable document in that it was like, in real time, what she was thinking.
[00:22:35] Speaker A: And Rachel, when you went back to the journal, because here you're dealing with the cognitive issues, and I think the cognitive in addition to the infectious disease, I think it's also here, nobody's recognizing what you're thinking, your opinion, and what's going on. So you might as well just kind of shut down, because there's no purpose for me to voice anything anyway, because I can't trust what I'm thinking.
I view the world is not correct, according to what the authorities say.
For me, I'm thinking that kind of combination of things.
But do you remember when you went back to the journal to read it?
Did it all come back live, or did it seem like this was a different person?
[00:23:29] Speaker E: Oh, no, it came back. It's crazy how when you go back and you read something and all of a sudden you're just right back there. So that was one of the hardest parts about writing the book, actually, was going back. I read through the whole journal. It was like 500 plus pages. And so I read through it. But, yeah, it's like, I'm 32 now, but I was just right back as a really sick, scared 13 year old. So I did a really good job in the journal of talking.
My thing was nobody understood what it was like to be in my life and then all these doctors were telling me that I was just making it up for attention. So I worked very hard to document exactly what happened. So I had so many conversations. This doctor said this, and then I said this, and then he said this, and I just put it all in there because I wanted something to document what really happened.
[00:24:24] Speaker C: That is so amazing that you did that.
I hope everybody you've ever met has said how proud of you that they are and how courageous that you are. And I can't imagine, because that was like PTSD all over again. Having to read through that and get it out there for the readers to read, I can't imagine. I don't think I would be that strong to do it. Well, here I am. I talk about lime all the time, but I don't know, I guess you just kind of put it into a different perspective because I think you're so strong and brave and amazing. I feel like I can ask you this question without it having any triggers. And I believe it's an important thing to talk about, especially because we don't get a lot of young kids on our show that talk about their journey with Lyme. So I know that many, many episodes that we've had somebody talk about the suicide tendencies that they had and the dark places that they went to. And a lot of us have always said that we found our why, like, why we wanted to live, whether they had a child or a new grandbaby, or they found their reason why they wanted to keep fighting. What got you through those dark days?
[00:25:46] Speaker E: Well, good question. What got me through and what's still something really important to me now was actually filming and editing videos. And so shortly after I got back from the hospital, when I was there and they're not believing me, I came home and was in a really dark place, and I have an older brother, and I just didn't even want to leave my room. And then he said, Come to my room. I want to show you how to do this thing. And what this thing was, was how to film and then put the video footage on the computer with a cable, old school. And then how to edit a video. And so throughout my entire Lyme journey and throughout all of my teen years, documentation was huge for me. So I not only documented in my journal, but I filmed everything, and I made videos all the time, just showing me using my pick line or doing other things, taking my medication. I would show all the pills I took in a day. And so filming and editing videos of all different types was really important to me. And even now, if I'm sad, I'm like, well, let's film footage from my life and stuff. So that was something that I did. We got my hospital bed all set up. I had my keyboard, my wireless keyboard, my wireless mouse. We had a little hospital table for my computer, so we had it all set up so I could do it from bed. So that was quite literally a lifesaver for me.
[00:27:11] Speaker C: Wow.
Are we going to have a documentary come book? I think we need a movie here.
[00:27:19] Speaker E: Rachel go to my Instagram, which is resiliently. Rachel I love to post videos of my life, specifically showing where I was with lying. One of my favorite things to do is show where I was with Lyme and then show me now where I'm like doing flying trapeze or repelling down a waterfall. So I like to show the contrast of where I was and then where I am now, where I never thought I would be as that teenager.
[00:27:44] Speaker C: Oh, my gosh. So does that mean I have to figure out what Instagram is?
[00:27:48] Speaker E: Yes, that's what it means.
[00:27:49] Speaker C: I know it sounds I'm telling you, I don't like technology, but I'm going to do it just for you, Rachel, because I want to see your life resilient.
[00:27:58] Speaker E: Rachel on Instagram.
[00:28:02] Speaker C: Amazing.
[00:28:03] Speaker A: And I'm curious and I have to watch water. You jump off waterfalls and you do well.
[00:28:11] Speaker E: I went to Costa Rica this past January with my husband and so, yeah, one of the things that he chose not to do it, but I was like, there's no way you're keeping me from this. So we repelled down 200 foot waterfalls and it was the coolest thing ever. And it's moments like that that I love documenting. I mean, I love experiencing, too, but I love documenting and then kind of showing where I was and where I am now. Because I know, as that sick teenager, I never thought about the future. I mean, I didn't think I had a future, but I certainly didn't even want to think about it because I did not know it was possible to live.
[00:28:46] Speaker C: Wow. Yeah. No, it's incredible. So do you feel like because you went through this Lyme journey, there's just nothing you can't do? There's nothing harder than going through that Lyme journey.
I'm gathering that you do feel that way because your husband didn't even do.
[00:29:04] Speaker E: It and you did it.
Yes, I definitely feel and I've been told I try to find joy in everything that I do as much as possible. I've been told I get easily excited about very seemingly small things, but I feel like there's probably something about that that was because of growing up in my bedroom throughout all of my teen years. I was in the wheelchair from 13 to right before my 17th birthday. So while other people are out going to school, I was sitting at home watching Gilmore Girls with my mom in my hospital bed.
[00:29:42] Speaker A: Yeah, those years are so important.
And I'm curious in regards to because I know a lot of healing when people go through, like, a traumatic childhood or traumatic event, and you have these kind of therapies where you go back as an adult and you go and kind of hug the child, your younger version of yourself, and kind of let them know that, yes, you didn't have the power at that time, you didn't have the choice, but you're there kind of loving on them. So it almost seems like, in a way, that that is what you're doing, that you're kind of healing your child, healing your teenager as you are doing these documentaries and doing resilient.
[00:30:31] Speaker E: Rachel yeah, no, I actually really do feel like it's really cathartic like that because, yeah, I'm going through and I even did speaking of videos and stuff, I like doing tech stuff. So you don't like tech? But I like Tech. So I had a video of me bedridden, and I don't know what I was doing, but I had a lot of time on my hands. So I filmed myself just staring at my computer. And I don't know what my point was, but I was staring at my computer for a long time in bed, kind of moving back and forth. So I took that footage and then I took the screen of the computer, and I now put in clips from me now running and doing all these cool things. So it made it look like I was sitting in bed sad, but looking at my computer and then seeing all these things from the future. So it's kind of cool.
[00:31:19] Speaker C: That is really cool.
[00:31:20] Speaker A: That is awesome.
[00:31:22] Speaker E: It is like healing, because then I could put the spin of, like, this could be what the future.
[00:31:27] Speaker C: You're dreaming of the future. Yeah.
[00:31:30] Speaker E: I was very happy I had whatever that footage was for.
[00:31:33] Speaker C: Tell me that you got into some type of technology stuff as your career.
[00:31:38] Speaker E: I actually wanted to when I was bedroid, and I was like, what could I do? And then I was thinking I wanted to film and edit videos, but I just do that on the side. I'm actually a speech therapist at a school, so I like working with people and with kids.
[00:31:52] Speaker A: Well, that's cool as well. That's really cool.
[00:31:54] Speaker C: It is.
[00:31:54] Speaker A: And what a cool thing for other teenagers dealing with Lyme to be able to kind of watch that clip, seeing you in bed, being in pain and then watching see, this could be your future. This is your future.
How cool. What a hopeful thing.
[00:32:14] Speaker E: Yeah.
[00:32:16] Speaker A: So I'm also curious, during this whole you going through this event, what was your relationship between each other? What did that look like? Because here you're dealing with this hard thing. You don't get to be a teenager like other teenagers. And what was your relationship as daughter mother through that whole process?
[00:32:40] Speaker E: Yeah. Well, do you want to sweet? I can sweet.
[00:32:44] Speaker D: I'll say that I got to practice being calm. I got to practice being accepting of situations that were not. My favorite thing to be, and she would go bonkers sometimes, and I could later, if I needed to go cry or something, I could do that in another room when I could do that on my own. But I had to stay strong for her. And it was hard. It was often hard, but we kind.
[00:33:28] Speaker E: Of found our groove, though, and we did a lot, because the thing is, I couldn't go anywhere. So, I mean, for a good chunk of the time, I was just bedridden in my room. And then even after that, I would go to school for like, one class a day, which she would drive me. So we were together all the time, which is a lot for anyone, but especially for a teenage girl and her mom, that's a whole bunch of time together. And so that was challenging, but at the same time, we got through it, and we would watch a lot of shows together, and I'm very grateful for.
[00:34:06] Speaker D: Uh we watched just about everything of gilmore. This was before there were streaming services, netflix existed, where they would literally mail you a DVD, and we were on the plan where you would have five of them at the same time so they could be going back and forth. And we saw, I think, every episode of gilmore girls and every episode of were. We were just looking for entertainment and distraction and getting through the day.
Don't you have some t shirts that have quotes from gilmore girls on friends? That became a big part of our.
[00:35:01] Speaker C: You know, through this rough journey. It sounds like you guys still saw the bright side on things and were able to create some amazing memories that you'll have forever from this bad experience, but yes. Dorothy I could just imagine how you would have to put on this facade and just be her know, outside of whatever. When you're with her, it's like, do I be the mother? Do I be the caregiver? I have to cry when I'm away from her. I can't show her that I'm scared.
It's almost like you're this double person while she's going through this, because every parent wants to be strong for their child. And kudos to you if you were able to hold it together every time you were around her, because that's a lot.
[00:35:53] Speaker D: Most times.
Most times.
I knew she was keeping a journal, and I knew that it was really important to her to do that. And we talked about the fact that she was keeping this journal, but I didn't read it till a couple of years ago when she offered it to me. And there was a lot of really hard stuff in there, and there were things that I didn't know about at the time that she wrote about.
Some of them were just her dark thoughts at the time that she didn't share with me.
We've talked about this once she got better and went on with life.
The journal collected dust.
[00:36:52] Speaker E: She wasn't like 17 years. I couldn't look at it. I couldn't read it.
[00:36:57] Speaker D: It was too hard. And it was really I think it was during the pandemic, wasn't it, that.
[00:37:02] Speaker E: You decided 2021 January yeah.
[00:37:05] Speaker D: Decided that she was going to do something with this, and it was hard material. It was hard for her, it was hard for me. And so something that we've talked about, it's like when you're writing a book, you have to reread it a whole bunch of times.
You have to proofread it, and you have to this and that. Well, maybe we'll change these three words, but it's like you really into it.
It was hard material to really be into. And sometimes I know I had to just say, I'm going to set this aside for now and go do something else, because it was hard, dark material.
But I do feel that in our experience, that we did show that people can get through this and that there is hope. And so many people I'm involved with a lot of the online groups and Facebook and all that for some of the lime groups, and there's a lot of people that are going through hard times, and they need to know that there's people out there that have gotten through it and that they can too. And so that was one of the things that we hoped to offer with this book to people.
[00:38:47] Speaker A: Yeah.
And it's so important because for an individual going through that dark time, you then will have judgments on what you're thinking and feeling. And so if you have somebody else that has gone through it and you can see kind of that rawness and the realness of where they've been, not the sugar coated version, then they can kind of acknowledge the place that they're in and say that I'm okay, I'm not the only one.
I know I'm feeling this and this is all going on, but I'm okay. And I don't have to think that I'm bad or horrible person or none of that.
This is just my situation right now, and I'm not alone.
[00:39:41] Speaker C: Yeah. And that was a hard thing to go through, is that obviously you were never alone. Your mom was with you this whole time. Your brother was with you. You guys were doing these videos, and dad okay, shout out to dad for sure.
And I know I had an amazing support system, but I felt so alone. I was always so alone and in such a dark place, I think because I didn't understand what was going on, which means they certainly didn't understand what was going on. And yeah, it's just not I've had tears in my eyes most of this show talking to you guys, like, seriously, I'm so affected by what you're saying and what you did and being able to journal the way that you did this and make it a fun thing that you're going through while you're fighting for your life. And then to hide this journal for 17 years and then come out with it.
I'm going to get on Instagram. I'm going to find your book on Amazon. I'm going to blow it up on my Facebook page. I'm telling you, everybody needs to read.
Even I just can't just you're amazing, Rachel. You're amazing. Thank you.
[00:41:03] Speaker E: Well, thank you. And when you know, at my not again. This is back in the Dark Ages, and so there was no Instagram and being friends with people online or it was a lot harder, at least. But the first Lyme patient that I met and got to sit and we talk about it in the book, got to sit down and have a conversation. I just felt so seen when he was talking about his experience. And so it's like, I've always remembered that. And I hope somebody reading this book has that same feeling of they feel seen reading my story.
[00:41:40] Speaker C: And they will, and they're going to be heard by just you coming on and sharing your journey with us.
It's amazing. We need these voices in this community because, one, we don't get enough advocacy about it. There's not enough awareness about it. Leave that to your mom to do because it sounds like she's probably doing a pretty incredible job with that. But we need your voice. So keep I'm just I'm in.
[00:42:12] Speaker A: And Dorothy, I would love to hear because there's so many parents that are in your situation and not fully understanding what's going on and how to behave and what is appropriate because you're still dealing with a teenager. And so where can I draw the line? Where shouldn't I draw the line?
Do you have words of wisdom for parents that are going through what you went through?
[00:42:45] Speaker D: Well, I wrote a book that came out about six years ago called When Your Child Has Lyme Disease a Parent Survival Guide. I co wrote it with Sandy Barrenbaum, who's a Lyme literate psychotherapist who specializes in families dealing with Lyme disease. And that book talks more about sort of the larger issues of finding a doctor, dealing with schools, that sort of thing. And this book is more our personal story, but I would say that a very large part of it. We talked earlier. You said, did she ever doubt herself?
I doubted myself as a mother a lot through this, and I think it's very important. And I doubted her in the beginning, too. All these people were saying she was faking it. I didn't think she was faking it, but why are they saying that? And so I think one of the most important things is that you believe your child. You believe them when they say what they're going through. And not just doesn't have to be a child, any family member or friend who's going through this, I think patients that's right up there at the top of the list of what they need is somebody to believe them, to believe what they're going through, and then find what you need, find the support that you need. There are a lot more resources available now. We were embarking on this in 2005.
There were virtually no books about Lyme disease or this kind of Lyme disease experience.
There are good books out now, some written by doctors, some written by patients, some written by journalists.
And there's websites that have information. There was not much information on websites when we were involved in this, including the California Lyme Disease Association, which was the organization that know under a different name that I'm now involved with. They had a lousy website at the time. And there's lots of resources out there, and you need to find your own personal support. You need to believe your child. You need to find the information that you need.
In terms of Lyme disease, we have a website. We have a Facebook page and Twitter accounts and Instagram.
And so whatever your chosen channel is, we have a way of getting information to you, and I would encourage people to take advantage of that. There are other Lyme organizations that also have on the patient side of things that give information about research and things to help people. And I think you got to reach out to get what you need.
[00:46:21] Speaker C: That's my advice, and I think that that's all very great advice, good tips, and I'm glad you said the one thing I want to touch on it just real quick. So you started this in 2005 and you mentioned that there were no resources out there, and I got bit in four, but got sick in eight, and there were no resources out there. So for those of you listening to this who think that you're all alone, there's no support, trust us when we say there's all sorts of support out there. We didn't have it when we were going through this, but we do know that there are amazing resources out there, and sometimes you just needed to be pointed in the right direction, and we can help you with that. Reach out to us. But there's so much support out there for you. So there's no reason to ever, ever feel alone or that nobody understands you because there are so many people that do.
[00:47:19] Speaker A: Well, Rachel and Dorothy, this has been amazing.
What a powerful story. What a powerful to have this opportunity to really get into real time, what a teenager was experiencing.
What an opportunity. So thank you for sharing that to the world.
[00:47:47] Speaker E: Thank you for having us. Thank you.
[00:47:49] Speaker C: Absolutely. We appreciate you guys so much. And we are going to have the title of your book in the title of your episode so everybody can go online and I'm assuming you can find it on Amazon. Yes, everybody can find it because it definitely is going to be a must read. For anybody going through this journey or anybody that has a loved one going through this journey. So super grateful for you, Rachel, for being so vulnerable and brave and coming out with us and sharing. And to you, Dorothy, for just all you're doing for the Lyme community, because we need you both. We need you both. So we appreciate you so much.
[00:48:25] Speaker E: Thank you very much.
[00:48:27] Speaker A: Thank you.
[00:48:28] Speaker C: All right. Thank you.
[00:48:29] Speaker A: All right, bye bye now.
[00:48:39] Speaker B: The Information this podcast is for educational purposes only, and it's not designed to diagnose or treat any disease. I hope this podcast impacted you as it did me. Please subscribe so that you can be notified when new episodes are released. There are some excellent shows coming up that you do not want to miss. If you're enjoying these podcasts, please take a moment to write a review. And please don't keep this information to yourself. Share them with your family and friends. You never know what piece of information that will transform their lives. For past episodes and powerful information on how to conquer Lyme, go to integrativelimesolutions.com and an additional powerful resource, lymestream.com. For Lyme support and group discussions, join Tanya on Facebook at lyme conquerors mentoring Lyme warriors. If you'd like to know more about the cutting edge integrative of Lyme therapies My Center offers, please visit thecarlfelcenter.com. Thank you for spending this time with us, and I hope to see you at our next episode of Integrative lyme Solutions with Dr. Carlfell.
