61. Seeking answers and finding resilience with Rachel and Dorothy Leland

In this episode of the Looking at Lyme podcast we welcome Dorothy and Rachel Leland, a dynamic mother and daughter duo who are changing the way we understand Lyme disease through their writing and their drive to convey important information to help Lyme patients and those around them.

Rachel and Dorothy are co-authors of the book Finding Resilience: A Teen’s Journey Through Lyme Disease. In the book, Rachel recounts her difficult journey through Lyme disease and co-infections. She is now a speech language pathology assistant. Dorothy is president of Lymedisease.org, an internationally renowned organization and platform for Lyme disease education, advocacy and research. She is also author of the online blog, Touched by Lyme.

A Lyme journey from two different perspectives

Rachel kept a journal during her illness, documenting what was happening for her physically, emotionally, personally and to some degree, medically. It wasn’t until fifteen years later that she decided to share what it was like for herself and her family to live through those times. When Rachel’s mom Dorothy read through the journal, it became clear that there was a lot more going on at that time than what Rachel had written. Dorothy had a different perspective as a parent and organizer of much of her medical care. At that point they decided to write the book together.

“I’d kept a very detailed journal…anytime I looked back at it, it was just too upsetting, so I just kind of let it sit there for like 15, 17 years. And then a few years ago, I finally decided that I was in a place where I really, really did want to share what it was like, as a kid growing up with Lyme, and what it did to our family.”

Rachel Leland

Recording experiences in writing, pictures and video

Rachel documented a lot of what was happening to her during her illness, not only through her journaling, but also through photography and videography. Her passion for journaling, photography and videography was revealed in the book. Having these records also made it much easier to recall events and describe them fifteen years later when writing the book.

Revealing internal struggles: Lyme disease affects the brain

In the book, Dorothy learns about some of the darker moment’s in Rachel’s own experience, many years after they had happened. Dorothy reveals to our listeners what it was like to read about these experiences and look back upon the emotional turmoil that Rachel was going through. Rachel talks about how valuable journaling was for her when she was going through her illness. She was able to express her frustration freely and articulate what was really going on, even when the medical community didn’t believe what she was telling them.

Confusing symptoms and being misunderstood 

One of the challenges Rachel and her family faced early on was trying to understand how a soccer injury to her wrist could cause a cascade of other physical symptoms and body pain, leading to her health decline, and eventually her inability to walk. She relates how frustrating it was that people around her didn’t believe her, some even telling her that she just needed to try harder. Reflecting back, Rachel now realizes how damaging that was, especially coming from important people in the medical community.

“It was really demoralizing having doctors just totally discount what I was saying…and just saying you just need to, you know, you just need to try, you just need to want it. And you need to stop wanting attention, and that was really damaging. And the older that I’ve gotten, the more I’ve realized just how damaging that was just mentally…that happens to so many people, especially with people with complex chronic illness. So that was extremely hard having it come from important people in the medical community.”

Rachel Leland

Bizarre responses to medical uncertainty

Dorothy adds that people in the medical community didn’t believe her either. Not only did they not believe her, they also implied that they were all cooking up a story and trying to get away with something. This attitude made their struggle even more challenging. As Dorothy points out, this is a common experience for so many Lyme patients who are simply seeking answers to their health problems. She relates how bizarre this is in the context of people who are sick and just want to get better.

Finding support and early Lyme advocacy

Rachel talks about how fortunate she was to have a group of friends that supported her through her illness. Dorothy also sought out support during Rachel’s illness, even though the support network for Lyme disease was very minimal at the time, which was almost twenty years ago. She connected with a group called California Lyme, but social media didn’t exist and there were no large organized Lyme groups like there are now. Dorothy emphasizes that although there can be “bad behavior” on social media, research has also shown that patients who participate in support groups for diseases such as cancer live longer and are healthier.

“They not only didn’t believe her, they didn’t believe me, and it was that we were somehow cooking up something weird here…my goal wasn’t to have a daughter who was ill and too sick to go to school. That was not my goal. But they acted like that was my goal. And it’s a very bizarre situation to be in. And when we were in it, I thought, why are these people acting this way to us? Like we were the only people in the world that were doing that, you know, were in this situation. And what I found heartbreaking is that that’s a very common experience for people, in Lyme disease, that you’re not believed.”

Dorothy Leland

Sharing physical symptoms first, internal struggles later

In Finding Resilience, Rachel reveals some of the internal struggles she experienced during her illness. She explains to listeners that, although a lot of those darker moments made it into her journal and her book, at the time she didn’t share them on social media. She recounts that in contrast, she was able to share many of her physical symptoms on social media. After she wrote the book, people started reaching out to her, sharing that they too had similar experiences. It was Rachel’s goal in writing the book that it would be helpful for people who are going through what she went through.

Cervical spine treatment was a game changer

After multiple treatments, Rachel turned a corner after receiving treatment relating to her cervical spine. She explains that her pain finally went away after those treatments, allowing her to be able to walk again. Dorothy points out that all of the other treatments that lead up to that time also played a role in her recovery. 

“After DNRs, I started being able to do physical things…ever since DNRs, I just found that like something shifted definitely, in my whole health.”

Rachel Leland

Limbic retraining to heal multiple sensitivities

Another game changer that happened years later for Rachel was limbic system retraining through Annie Hopper’s DNRS program. Rachel had developed multiple sensitivities to foods, smells and chemicals in the environment that were affecting all parts of her life, including her work. She explains that after doing limbic retraining through the DNRS program, she no longer has these sensitivities.

Staying healthy

Rachel recovered from Lyme disease and the co-infections she contracted and is healthy now. She hopes that through telling her story, people can see that it is possible to get better. Dorothy explains that, from what she’s seen in patients who have recovered, lifestyle factors like sleeping well and eating healthy foods are important in order to stay healthy. 

“I really hope that especially people dealing with chronic illness, I hope that they take away the message that things can be so incredibly low and seem so bleak, and that and that something can change down the line and just maybe help give them a little spark of hope that if it could happen to me, and they read my story, that it could happen to them…I really, really wanted this story to be something that people who are sick, could read and feel a connection to, and then also feel a connection to the recovery aspect of it.”

Rachel Leland

Canada has followed US health policies regarding Lyme 

Dorothy encourages listeners to learn everything they can about tick-borne diseases. She points out that doctors don’t know everything they need to know about these diseases, and refers to the shortcomings in health policies that have been guided by the CDC and IDSA. She notes that Canada has followed the lead of the US regarding health policy for Lyme disease.

“Unfortunately, I think the Canadian government kind of follows the lead (in Lyme policy) of some of the stuff that’s done in the US, and that’s unfortunate in this case… it just behooves everybody to…stay informed about things.”

Dorothy Leland

Education, advocacy and research through Lymedisease.org

When her friends and children became ill in Northern California, Phyllis Mervine started a grassroots organization which became the California Lyme Disease Association, and now goes by the name of Lymediseas.org. Along with an online publication called the Lyme Times, the organization publishes a weekly newsletter and a variety of online blogs and articles. Lymedisease.org is also home to a large research project called MyLymeData, a patient-powered research project designed to better understand tick-borne infections from a real world perspective. It continues to provide insights into the diagnosis and treatment of Lyme, including chronic Lyme, from the patient’s perspective.

“If early Lyme was diagnosed better, there’d be less persistence…in terms of the CDC, it’s steps forward and steps back. They just recently re-did a page on their Lyme website, and we were all horrified. They just said stuff that was, in our view, flat wrong. And, and in a way, flat wrong in a way that’s harmful to people that have Lyme disease. And so there’s, there’s a long way to go with that.”

Dorothy Leland

Increased awareness and emerging research bring hope 

Dorothy talks about the progress that’s been made regarding Lyme disease, and the importance of keeping Lyme disease in the spotlight. She refers to the fact that celebrities, including several Canadians, are speaking up about their challenges in dealing with Lyme. She also emphasizes that there is a lot of research going on for new tests and treatments, and reiterates the importance of accurate early testing in reducing the health burden of these diseases. 

Thank you Dorothy and Rachel for writing your book, and for the important work you are doing to educate and advocate for people with Lyme disease and other tick-borne diseases!

Transcript

Catherine Kinsella: Welcome to Looking at Lyme, an educational podcast of the Canadian Lyme disease foundation, designed to increase awareness, empower listeners with expert knowledge and explore solutions. I’m Catherine Kinsella. 

Sofia Osborne: And I’m Sofia Osborne

Catherine Kinsella: In this episode of Looking at Lyme we welcome Dorothy and Rachel Leland, co authors of the book Finding Resilience:  A Teens Journey Through Lyme disease. Rachel is a Speech Language Pathology Assistant, Dorothy is president of Lyme disease.org, an internationally renowned organization and platform for Lyme disease, education, advocacy and research. She’s also the author of the blog touched by Lyme.

Sofia Osborne: Welcome to the podcast, Dorothy and Rachel.

Dorothy and Rachel Leland: Thank you. It’s good to be here.

Catherine Kinsella: First of all, thank you both for having the courage to write this book. You were both so candid and open recounting what must have been an incredibly harrowing experience for both of you.

Rachel Leland: Thank you.

Sofia Osborne: Before we talk about some of the details of your life journey, Rachel, could you tell us about the book and how the two of you came to write it?

Rachel Leland: Yeah, so I started this book about three years ago, I had been something I wanted to do for a very long time, all the way since I was 16, with Lyme disease, I’d kept a very detailed journal, and I’d always wanted to do something with it, but I wasn’t quite sure what and I was just not able to really even think about doing anything with it. Anytime I looked back at it, it was just too upsetting, so I just kind of let it sit there for like fifteen, seventeen years. And then a few years ago, I finally decided that I was in a place where I really, really did want to share what it was like, as a kid growing up with Lyme, and like what it did to our family. 

And so I started writing the book, very heavily based on my journal. I went back, I read through it, and then I just sort of went in order and just rewrote what was in my journal. But then, after like six months, we realized when I had my mom read through it, that it was very much just my side of the story, and I was thirteen at the time, so I missed a lot of other stuff that was going on, and so that’s when my mom said, what if we write it together, and we can show both perspectives from how it really impacts the family. And so then that’s when she got on board, and I was instantly excited about that, and it was just a really cool opportunity to be able to do that together.

Sofia Osborne: Yeah, you talked about consulting your journals,and I was wondering what it was like to look back on those journals. So much, you said you felt you kind of had the strength to look at them now. But what was it like to sort of relive it through those journals?

Rachel Leland: It was so hard because you go from being you know, three years ago, and am I 32, so I was like, you know, late 20s, and healthy and doing well too, then going back and reading something written from somebody in such a dark place who you know, was not doing well, mentally or physically, and so it was really hard and confusing, because, you know, your brain kind of starts to think you’re back there. So it was really difficult, but I found it very important to do that, because it was very easy in a way.  I would go back and I’d read that journal, and suddenly I was just back there, and I would remember so much. I also documented my life like extremely well. And so I had tons of pictures, tons of videos, and so it made it really easy to go back, read the journal, get the exact date, go back, find video and pictures from that date, and then really get like a good full picture of what was happening. So it made it very helpful for writing the memoir. 

Dorothy Leland: It was hard for me too, to read that stuff. Because I had lived it. I had lived it, but I still only really knew what was happening to her from the outside. And so that was really a picture of what was happening to her on the inside, and up until then I could speculate about it, but this was really a view into what she was really going through, and even though most of the high points if it could be considered high, high points, most of the prominent things that happened, of course, I remembered that there were some things in there about her thoughts and whatever, that I I didn’t know until I was looking at it a few years ago. And so it was shocking, and it was painful. But I think it’s, it’s just, it’s just so important, I think shocking and painful. describes what a lot of people experience with Lyme disease and their families. You know, we’re trying to share that experience with other people and hope that that helps them. I have heard from people that say that it has helped them to read that. So that’s always very gratifying for me. 

Rachel Leland: Me too

Sofia Osborne: Definitely. I was really wondering about, at that time, how journaling helped you cope with that experience. It seems like it was a really important outlet for you.

Rachel Leland: Yes, it was very important. I mean, I got so into it, that I would write, sometimes multiple different times a day. So like, there’d be you know, the date at the top, there’d be a bunch of writing, and then like, you know, three stars, and then under it, a bunch more writing. And so I would just go back, and anytime I had something that I wanted to say, and it was a place where I could say, whatever I wanted to say, If I wanted to write in all caps, and swear and do whatever, that’s what I could do, because I couldn’t do that, you know, in the doctor’s appointments, and I couldn’t do that maybe elsewhere, but I could I can say whatever I wanted in my journal, and I could document my truth, even when that was being denied by the medical community.

Sofia Osborne: In the book, we find out that your symptoms began after a soccer injury. Could you walk us through what happened after that injury and what it was like not knowing what was causing your symptoms?

Rachel Leland: Yeah, so it was super confusing, and again, we only have our Lyme story for ourselves that we’ve gone through, and I know I’m sure it’s confusing for everybody, but for me, it’s specifically, I fell, and I sprained my wrist. And so you would assume that you would just have a wrist issue at that point. But then every, you know, every few days, every week, something new happened, and suddenly I’m on crutches and then I can’t walk at all, and I’m in a wheelchair. And all we knew was I’d fallen on my wrist, and so we were very, very confused, and it was just very unsettling, because you really want a label to be able to use when people say, Why are you in a wheelchair, like what’s going on? You want to say, well, here’s why, and we couldn’t say that, so we just kept telling everyone, it was a soccer injury. But it was just very confusing. So that time was, yeah, a whole bunch of telling people I had a soccer injury and hoping they didn’t question it.

Catherine Kinsella: Yeah, I noticed in the book, that you came across this very theme, quite often of just people not believing, and even some of your classmates didn’t believe you. What was that like for you, trying to get through those times when you didn’t know what was going on, or even when you didn’t know what was going on, and people didn’t believe you, for both of you?

Rachel Leland: I mean, in terms of the kids not believing me, at the time, when my classmates weren’t really understanding what was going on, I wasn’t understanding what was going on either, so that was just frustrating. But it was really demoralizing, having doctors just totally discount what I was saying, I would say. I was, for five weeks I was in a children’s hospital, and you’re trying to get answers. And I was there, like, put me in an MRI, like, let’s get answers like, what are we doing here, and let’s try new medication, and everyone was just discounting that, and just saying you just need to, you know, you just need to try, you just need to want it, and you need to stop wanting attention. And that was really damaging, and the older that I’ve gotten, the more I’ve realized just how damaging that was just mentally, and just like how my brain works in terms of when I’m talking to someone even now, the first thing I think is they’re not going to believe me. So I have to prove what I’m saying is true. And so, it’s very sad that happened to us, but that happens to so many people, especially with people with complex chronic illness. So that was extremely hard having it come from important people in the medical community.

Dorothy Leland: As the mother in the situation, you know, we take our kids to the doctor, I’ve been taking my kids to the doctor since they were babies. And you know, nobody. It was never that somebody didn’t believe what I was saying, and in the beginning with her, it was like, well, she fell and hurt her wrist and well, well then here’s this other problem. But as it got more complex for them and the doctors couldn’t figure things out. It shifted, and it got to where they didn’t believe me. They not only didn’t believe her, they didn’t believe me, and it was that we were somehow cooking up something weird here, we were trying to, we were trying to pull something over, and when we were dealing with the schools that was, I think I have that in the book that somebody said, you’re not going to be able to get away with anything next year, like we had been getting away with something this year. It wasn’t. My goal wasn’t it wasn’t my goal wasn’t to have a daughter who was ill and too sick to go to school. That was not my goal. But they acted like that was my goal. And it’s a very, it’s a very bizarre situation to be in, and when we were in it, I thought, Why are these people acting this way to us? Like we were the only people in the world that were doing that, you know, we’re in this situation. And what I found heartbreakingly, is that that’s a very common experience for people in Lyme disease, that you’re not believed, and, you know, Yolanda Hadid, that’s the name of her book was, Believe Me. It’s, you know, it’s that you’re not believed, that you’re that you’re denied. And it’s not just medical, it’s school, it’s psychiatric, there’s people that you know, you’re, you’re not really you’re not really having that problem, and that’s just very, that’s just very, very bizarre. And unfortunately, with COVID, long COVID, there’s a lot of lot more people in that situation. Some elements are starting to believe, long, COVID people, but there’s still plenty of them that feel that they’re not, they’re not being believed that they’re their personal experiences being denied. And, as Rachel said, that’s very demoralizing, along with everything else. It’s very demoralizing, and this is a time when you need your strength, you need to believe in yourself and go forward and everything, and it’s very hard.

Catherine Kinsella: Yeah. And that came out in the book as well, just looking around you and trying to find support, like, for both of you, like you had family support. And Rachel, you had friends that were really supportive, and it’s really good that people can read that just for themselves to, to look for that in their own situation, wherever they can find it.

Rachel Leland: Yeah, I was extremely lucky in my situation that I had friends, but also, it’s like, I’d like to acknowledge that I also had all of those friends prior to getting sick, and so that’s the thing, I know so many people that are so sick, and they’re like, Well, how do you get all these friends, like, you can’t go anywhere, you know, you can’t do anything, and so I was so lucky that I have these wonderful neighbors and, and they would come over and be with me, and I’m still very good friends with all of them today. So I’m really, really grateful for that.

Dorothy Leland: And one of the things in my case, was, was reaching out with online groups and and this was, Rachel got sick in “05, and they were just sort of starting to have, you know, social media didn’t exist yet in the way that we think of it today. And I don’t really think there were podcasts like this. It was a different point in time. But there was a group called LymeNet, that was an online discussion group. And there was something called California Lyme, which was a yahoo group at that time. And those two places were where I could find people that were in the same situation, and it was you know, now there are things through Facebook and other you know, other online groups, and so you sometimes have to be careful in those because there’s a whole spectrum, there’s a whole spectrum o,f and a lot of bad behavior, a lot of bad behavior on on social media, anti social media. And, but there’s a way where you can connect with people that are in similar situations, and that’s what I found I needed. I needed that, as a mother in this situation, was to find out, and certainly other diseases breast cancer support groups. You know, that phenomenon has been studied that people do better with breast cancer if they’re in a breast cancer support group, they live longer and healthier. And so this is, you know, this is really, really needed for people that are, you know, facing Lyme disease and other related other related conditions.

Catherine Kinsella: Yeah, we’re fortunate to have more of those than you had back when you were sick Rachel. I was just going to make a note about just how moving it was to read about all of your health challenges, Rachel, and especially your mental health challenges that you were facing, and so many other people are also facing with Lyme and other tick borne infections. And you talk pretty openly about some of the dark times that you went through, and thank you both for having the courage to write about that, because I’m sure it wasn’t easy for, for either of you to do. Can you talk a little bit about what that was like for you, Rachel, and also for you, Dorothy, from your perspective, sort of going through those, those darker times?

Rachel Leland: I mean, it was, it was horrible. Growing up, I was, you know, I’m in my room, so sick, can’t leave the hospital bed in my room, and then not just being in terrible pain all the time, but also being just so, so utterly depleted and depressed. That was extremely hard. And when, when we were writing the book, those were the most difficult parts to write and then reread over and over for years on end during the publishing process. But I felt it was just so important to talk about, because it’s so easy to talk about, I was in so much pain, and oh, my knees hurt so much. That’s super easy, and kind of a light topic, and that’s where I’d always been going, like, on my social media, I would always be talking about, you know, here’s me in a wheelchair, here’s me now, but I would often skip over just how bad things got. And so it made it seem easy, like what we’d gone through, oh, yeah, you’re in pain, and now you’re not. And so it was really important to me that we include, and not just be vague about it, but be like, this is what happened, because I know I’ve had multiple people have reached out and said, they’ve had very similar situations. And that, you know, I wrote the book, sort of about their life, too, and so that was the goal. So I’m really glad that we put that in there.

Catherine Kinsella: I think it gives people hope, you know that you were in such a place, but you were able to get through it together. 

Rachel Leland: Yes. 

Catherine Kinsella: Yeah. And so like, what were some of the pivotal points, then you finally got a diagnosis of Lyme disease, and you went through a lot of different treatments as a result of that. What were some of the pivotal points in your recovery from Lyme disease?

Rachel Leland: So, I mean, I’d say the most pivotal point was when we started seeing, after a few years of being on Lyme treatment, working with the Lyme specialist and things had gotten like a certain amount better, but then really plateaued and the pain wasn’t going away, and the biggest pivotal moment was when I started seeing a specialized chiropractor working with the upper cervical or ever was it called, atlas, you know, the top of your spine on and, and so when I started working with him, he was explaining just how valuable it is to have your spine and your neck in alignment, so that your brain can communicate with the rest of your body. And that was the treatment that ended up getting me able to walk and ended up turning off like just sort of basically turning off my pain. And so that was the biggest thing we’d had a whole bunch of, I mean, so many treatments, like I don’t even know what I was doing back then it was just we’re just doing so many different things, and I we couldn’t really pinpoint anything specific until doing that specialized chiropractor that was a huge game changer. And I still do that same type of thing today and it’s important for me to continue doing my chiropractic so that I can remain in alignment and still be feeling good. So that was like it for me, at least from my point of view, the biggest

Dorothy Leland: Well, she was taking antibiotics and doing a lot of, and herbal supplements, and  at one point we did a hyperbaric oxygen treatment and there were you know, there was a lot of detoxification and those kinds of things. And from my point of view, it seemed like she was improving in certain kinds of ways. She mentioned pain, she was having body wide pain, and that was the overwhelming symptom. But she was having brain fog, she was having lots of other issues. And, from my point of view, the medications and the other treatments, had some effect on those other things. But, so that was progress. But from her point of view, she was in pain all the time, she didn’t think that anything was helping, and so it was, it was the upper cervical chiropractic that really made the difference in terms of her pain. But she still had Lyme disease and Bartonella and Babesia. And so that took care of certain things, the chiropractic, but because she was suddenly not in pain all the time, she was in a much better place to stick a lot, you know, to do what you needed to do with other treatments. And so, and to be willing to, you know, make dietary changes and those kinds of things, and, you know, if you’re not, you know, somebody’s, you know, hitting you with a hammer, and then you have all these other problems. You know, you’re not thinking about that. They stop hitting you with the hammer, you’re willing to consider the other problems, and so that was, I mean, that was huge to be able to, I mean she had not been able to walk for three years, and then after those treatments, she could walk. And we have videos of her walking for the first time, and it was, you know, it was really, it was fun. It was really, it was really great.

Catherine Kinsella: Yeah, it was it came out in the book too, how dramatic that was, the change in your pain, and just like, just that one thing, just reducing your pain just turned things around for you.

Rachel Leland: Yes, yeah, it was like every day, it was something that was like the most exciting time. It’s like, oh my gosh, now I can sit up and breathe. Because for years, I could not sit up straight or lie down flat and breathe, I had to be always at a reclined angle, so this one day, all of a sudden, I can sit up and breathe, and now, you know, my pain has gone away now, and I can do this. It was very exciting. 

Dorothy Leland: Yeah, one of the first things that she did after she could walk was now I want to get my driver’s license.

Catherine Kinsella: One step at a time. 

Dorothy Leleand: Yeah. 

Catherine Kinsella: I’m just curious, as you’re reflecting back about the brain fog, Dorothy, and in your journals, Rachel, can you see some periods of time that you weren’t writing as much when you like, had more cognitive, cognitive symptoms, or could you see changes in your writing over time?

Rachel Leland: I didn’t see changes, specifically my writing, but I definitely during those times, I spoke a lot about how like, you know, I’d mentioned my friends names and say, hey, you know, so and so is saying that we did this, and I can’t remember. And Mom and Dad were saying that we did this, and I don’t know, and I looked in the journal and I don’t see it here. I’ve gone back and read all this stuff, and so I talked a lot about that, there was like a good few months where that was a whole bunch of just saying, I don’t remember this, but there were other times with me saying, I want to document what I did today. This is what I did. So that we know, so yeah, so that was sort of it was interesting to see that.

Catherine Kinsella: And one of the other things you talked about was some nervous system retraining that you did. We had Annie Hopper on the podcast some time ago, for her DNRS retraining, and I’m just wondering if you can speak to us about that.

Rachel Leland: Yeah, so that came years later. So I started walking in 2008 and then from 2008 all the way until 2018 is when I did, I started DNRs. So during that decade, I’d been dealing with, like trying to get my life back but then also simultaneously dealing with a whole bunch of other health issues from toxic mold and all this other stuff. So but by 2018 I had dealt with most of the Lyme dealt with most of the mold and I was doing mostly well except for, that after I started mold treatment, I became really I started having a whole bunch of food sensitivities and losing safe foods to the point where I just had a really small list of foods that I could eat without feeling sick. And then also chemicals just made it so that I had breathing issues, and that my skin would be like red, red hot and burning on and it just got worse and worse and I was diagnosed with mast cell issues and and so we were just trying medication trying elimination diets, nothing was working, and none of my wonderful medical team was able to figure out what to do, and then finally, we ended up deciding to have me do DNRS, and that just absolutely changed everything, like my life has been completely different since doing DNRS, because within those first six months of doing it, I got all of the foods back, I can now eat anything and not feel sick. And I’m able to be around any chemicals, I can get in an elevator that somebody just had perfume on, and I can not react to it, and that was just absolutely huge. But then also, after doing that, even though I was doing DNRS specifically for food and chemicals, I also found that just like they talked about in DNRS it can kind of generalize to other areas of just helping your brain out, and I found that my energy levels were just better. And after DNRs, I had such better consistently good health when I’d never had consistently good health before that. I mean, once I got Lyme, I never had consistently good health again. And then after DNRs, I started being able to do like physical things and started aerial yoga and hiking and goat yoga and all these different things. And so it’s just ever since DNRs, I just found that like something shifted definitely, in my whole health. 

Catherine Kinsella: Well, you look like you’re doing really well now. Do you still have to, you know, watch certain things? Are you pretty much healthy all the time? 

Rachel Leland: I’m doing really well. I mean, it’s still extremely important for me, as I said, to do, like, you know, maintaining my care and doing chiropractic and making sure that everything is you know, if something comes up, get on it immediately. So it does not become something else, because I definitely do still notice that like, if I like last year, I got the really bad stomach flu, and then it immediately went into a Lyme flare. And so it’s like, we got to get on that right away. So I have a really good medical team here, and so anytime something like that comes up, we get on it. But no, I’m doing really, really well. I’ve been learning how to snowboard, and doing a dance class weekly. And it’s just been, really, really cool to be just doing so well. 

Dorothy Leland: But just because I hear about it, she has to get good sleep. You know, it’s like that kind of thing. I know so many people that even though they have been sick with Lyme and related things, and they’re well, like, they’re really, like sleep is really important. You can’t you can’t say, Oh, I’m just gonna stay up all night doing things that might have done in another era. But sleep in general, you know, health, eating well, and that kind of stuff is just really important. I think sometimes, you know, I hear from people that they work, particularly when the teenager has been sick for a long time, and then they’re finally well, and then that they go away to college. I hear from the parents, a lot of times the kids will kind of go wild, and it doesn’t end well though. It’s one of those things that you have to, you know, you have to do the right kinds of things for health promoting kinds of things.

Rachel Leland: Set yourself up for success, right? Well, we always say, like everything we do, we’re always, that’s the goal. How do we set ourselves up for success soon? Yeah.

Sofia Osborne: I’m sure that your story gives a lot of people hope. And we were wondering, what message you hope people take away when they read the book.

Rachel Leland: I really hope that especially people dealing with chronic illness, I hope that they take away the message that things can be so incredibly low and seem so bleak, and that something can change down the line and just maybe help give them a little spark of hope that if it could happen to me, and they read my story, that it could happen to them. That was, I really, really wanted this story to be something that people who are sick, could read and feel a connection to, and then also feel a connection to the recovery aspect of it.

Dorothy Leland: I think from my point of view, one of the one of the messages that I really try to get out to people in other things that I do as well related to this, that it’s really important to get the information that you need. It’s, you know, when we first got into this, we sort of assumed that, you know, the first doctors that we went to, were telling us the way it was, and so many Lyme patients find out that what they were told by those initial doctor’s appointments was not, was not what they should have been told. And so it’s important for people to find out what’s going on what you know things about testing things about different kinds of treatment. I already mentioned, I think it’s really important to have the setting of a support group to hear from what other you know, other people are going through. I think there have been, there is a lot of new developments in particularly in testing for Lyme disease, and there’s, you know, other treatments that are that are coming down the pike too. And I think people, you need a way to find out that information, because it’s, you know, you can’t just, you can’t just assume that, that your, primary care doctor is going to know, all the answers. Unfortunately, the powers that be in the health, you know, the CDC and the, you know, IDSA and a lot of other factors of who determines health policy, I’m talking from the US perspective, but certainly Canada has the same kinds of issues. And unfortunately, I think the Canadian government kind of follows the lead of some of the stuff that’s done in the US. And that’s unfortunate in this case. And it behooves, it just behooves everybody to stay informed about things, and so that’s one of the things that I work on. When I write a blog, and I also manage other blogs on the Lyme, disease.org website, and we try to bring out different points of view different kinds of information, different people’s personal stories. And I think all of that information is is critically important for lyme patients, and their parents.

Catherine Kinsella: And their doctors even, to read through that and understand. Yeah, we’re gonna ask you just a little bit more about Lyme disease.org, and how how it developed, and what are some of the things that go on there?

Dorothy Leland: Well, it was, it was started more than 30 years ago by Phyllis Mervine and the couple of her friends that they live in Northern California, and Phyllis had been sick for 10 years, and some of her kids were sick, and she finally figured out that it was Lyme disease. This was back when people were first starting to talk about Lyme disease, a few people were starting to talk about Lyme disease. So she started what later came in to be the Lyme Times. She started it as like, you know, like a Xeroxed thing, she typed at her kitchen table and got it Xeroxed and stapled it together and, and mailed it to some people throughout the country, and then things grew out of that. And eventually it was called the California Lyme Disease Association. But now it goes by Lyme disease.org, and we have, the Lyme Times, is now an online publication that comes out a few times a year. But we have a lot of information on our website, we have newsletters that go out every weekend, every Saturday, people can sign up for a free newsletter that just says you know what the latest things are. But our big project is a research project called MyLymeData, and it is a, they call it a patient registry, somebody has been now. Unfortunately, from the point of view of Canadians, it’s just us just because, you know, it’s complicated. It’s a big project and it’s just set up for the US, but it’s essentially a lot of surveys somebody signs up and they fill out. Rachel was one of the first first people to join and they fill out information about themselves and like whether they you know, did you remember a tick bite? And you know, how long did it take how many doctors did you see before you got diagnosed? And lots of things about that and then they send out periodically they will send out like updates, you know, how have you been doing since the last time you filled it out? They try to find what treatments people are using what has helped the most. And a lot, where we work with academic researchers at UCLA at the University of Washington, and a few other places as well. A lot of this information is, it’s like a profile of what lyme patients are like. And there’s something called subgroup analysis, and what it is, is if you just take a whole group of people and say, oh, well, what symptoms do lyme patients have? And, and you can say, well, you know, they’ve got pain, and they’ve got fatigue, and whatever. Well, with subgroup analysis, you can, you can tease out, like, well, what, for instance, a big study that we did that came out last year, looked at women’s, how Lyme affects women differently than men. Nobody had ever looked at that before. And it turns out that there are symptoms and patterns of treatment and everything that were very different between women and men. And now that’s been shown in a lot of things. Heart disease affects women and men differently, and other you know, other other conditions, and it has to do with hormones and, you know, whatever. But it’s, that’s the kind of information that’s important for researchers that are looking through things. So we have done, I guess, two phases, I’m not actually on the MyLymeData team, there’s a team of people that specifically do that. I take care of other things. But they’re coming up on another big phase of this, and there will be new things coming out for you to answer. And see, I can’t participate in it because you have to have had Lyme disease yourself to participate in it, except parents can fill it out for their minor children, and also there is a decedent’s registry, if somebody with Lyme disease has died there, their family can fill out information, sort of a one shot deal, and they don’t have to have died from Lyme disease. I mean, it could be that they had Lyme disease, and they died for whatever reason. And we have 18,000 people who have signed up for it and who are participating, and we’d like to reach 20,000 this year. So put out the word to people that are listening, here it are in the United States

Catherine Kinsella: We have a lot of US listeners.

Dorothy Leland: And so, so that’s, that’s one of the things that we do with research.

Catherine Kinsella: It’s such an important thing too, because there’s not a lot of research on people that have persistent Lyme disease or chronic Lyme disease. And so we just don’t have that data from other other kinds of research. So it’s definitely, like such an important project. And you’ve been doing this for a long time, Dorothy, what is your perspective, you know, over the past couple of decades of progress that’s being made and where things are going in the future?

Dorothy Leland: Well, one thing I would say is there’s much higher visibility, there’s there’s much higher visibility, and there was something just just a couple of days ago that the that the that the CDC came out with, you know, higher reported numbers of Lyme disease, and that was really more because they changed some of the reporting criteria. But there’s, we’ve all seen, you know, publicity about celebrities with Lyme disease, including a couple of high profile celebrities from Canada, and those get that post get write ups and People Magazine and you know, some of those, the websites, Entertainment Tonight in that kind of thing, which which raises the profile, it gets people talking, it gets people talking about it, and that’s not I mean that It’s just that’s part of the picture. In fact, just the other day, Lyme disease was a clue on the TV show Jeopardy. But those are, those are sort of, you know, popular culture issues. In terms of the science, there has been a real push to get a better diagnostic test for Lyme disease, which is critically important because, you know, she was tested for Lyme early on, and it was negative, because the tests are crummy. And, and so there has been a real push for that, and there’s been actually something called the line diagnostic LymeX diagnostic prize, which has been getting, offering big money to companies that would come out with a better, more effective test for early Lyme disease. And of course, all of us are concerned about persistent Lyme disease. But if early Lyme was diagnosed better, there’d be less persistence. So that’s where, you know, that’s where they’re starting with that. In terms of the CDC, it’s steps forward and steps back. They just recently redid a page on their Lyme website, and we were all horrified. They just said stuff that was, in our view, flat wrong, and in a way flat wrong,in a way that’s harmful to people that have Lyme disease. And so there’s, there’s a long way to go with that. At the same time, the US has come out with the various health agencies working together, have come out with what they’re calling a national strategic plan for vector borne disease, and that’s certainly a good idea. We should have some strategy and how we deal with this kind of thing. And so I feel like it’s better than it was when things are better than when we first got involved with it. And I also think even the doctors that we went to the medical doctors that we went to that were the Lyme doctors, and that did help us, I think they know more now than they knew then. And so people that are maybe in the same situation, go to them now probably get a little different treatment trajectory than we had. And that’s progress. So I think that there is reason to be hopeful, but there’s also still a lot of reason to keep, for the advocates to keep pushing, and we need we need to be in a better place than we are.

Catherine Kinsella: Agreed. Yeah. Thank you so much for joining us, and people can just reach out to Lyme disease.org. to find out more and sign up for the newsletter there, and if you’re from the US, you can join into the big research project, MyLymeData. And thanks to both of you for joining us today in the podcast.

Sofia Osborne  48:51  

Thank you both for sharing your experience and it was such an interesting conversation.

Rachel Leland: Thank you so much for having us. 

Dorothy Leland: Thank you. 

Sofia Osborne: It was really cool to meet Rachel and Dorothy as I’m reading the book. Their voices are so strong in that book and both of their energy and persistence and spirit come through. And I think in the whole conversation, between talking about the book and also talking about what Lymedisease.org does, it just really made me think about the power of writing, and people sharing their stories and perspectives, and how that can give hope and give new ideas and everything. So that was what really stood out to me in the whole conversation was the power of writing and peoples personal stories.

Catherine Kinsella: Yeah, I agree that it’s so important to write things down and to share them. I’m just really grateful for Dorothy and Rachel for sharing all that they went through with the world, for both of them, trying to make things better in their own way, through Lymedisease.org and by sharing the book.

Sofia Osborne: Well, make sure to tune in next time as we engage with more experts from Canada and around the world. Thanks for listening.