Episode 623: From Bed-Bound to Ms Great Britain: Kirstie Haysman’s Lyme Disease Recovery Story

Hey, Kristy Hayesman, welcome to the TIC Boot Camp podcast.

Hello, thank you so much for having me.

Well, we are excited to have Miss Great Britain. It's, uh, really exciting to, uh, to finally have a chance to interview you. We, we were blessed to have met you at the, uh, 10th anniversary of the Limeori event. Uh, you did cross the pond and, and, and you were kind enough to join us, um, at the, uh, at the event in Connecticut here in the US and After meeting you, Matt in particular was really anxious to make sure we got you onto the podcast. So thank you for taking time out of your really busy schedule as Miss Great Britain to share your story and your experiences with the folks on the TIC Boot Camp podcast.

Thank you. It's no problem at all. Anything I can do to raise awareness for this illness, I will be here at all hours.

Well, thank you. So can you share with us a little bit first about the Miss Great Britain? How did you become Miss Great Britain and what was that journey like? How long had you been in the pageant industry? and, uh, and what ultimately led you to becoming this, uh, this national figure?

So I first entered Miss Great Britain in 2015, and, um, I had won the county pageant, which was Miss Hertfordshire at the time, which is where I lived. And I was lucky enough to go to the nationals, um, but I didn't place at that point, and I actually aged out because there used to only be one category with ages, and you aged out at 27. But I loved being there so much, and at that point we actually thought I had lupus. So I was raising awareness for Lupus UK, and I was raising funds for Lupus UK, and I was still functioning at that point and working, and I was baking cakes and selling them in bake sales for Lupus UK at that point. So obviously, as I aged out, I couldn't go back, but I always kept an eye on the pageant because I just loved it so much. And the girls are just incredible. They're all so, so supportive, and they're friends for life, really. And yeah, I became more and more sick as the years went on. And yeah, so when my story went viral when I was bedbound, the pageant actually saw my story and they wrote me a lovely message saying how sad they were that I was so, so unwell, um, and they wished me well. And that's sort of how it came about that I ended up back in another pageant, because I was lucky enough that they added 2 more divisions with the ages. So the Miss goes from age 18 to 30 And then from 30 to 44, they've got the Ms category now, which is the one that I'm in. And then from 44, and there's no upper age limit, you can be any, any age and you can enter the pageant. I think we've got somebody who's 71 this year in the pageant. Wow. Yeah. And they said to me, if ever you get well enough, please come back and apply. And that was just sort of like in my mind all through my healing.

Well, congratulations on, on the victory. And, uh, for folks who are listening to the audio version of this podcast, you have an unbelievably beautiful crown. I mean, I, I don't think I've ever seen a pageant winner, certainly here in the US, that would have a crown that looks like yours. So can you describe that crown for us and, and what it was like to ultimately, uh, be awarded that really cool crown you're wearing?

Absolutely. It sort of makes you look like a mermaid, doesn't it? It's so sparkly. It's like a lovely iridescent— it looks like, I don't know, the top of the Empire State Building or something, doesn't it? But, um, it was incredible because it really was a milestone for me Because when they sent me that message from Miss Great Britain, I was completely bedbound and I was in so much pain. I had carers washing me, feeding me, bathing me, putting me on the seat in the shower, back to bed. I could hardly move my body. I was in so much pain. I was under 7 stone and I'm 5 foot 8 in height, so I was severely underweight. And I was really depressed because, you know, I was just laying in bed all the time and I was watching it get light, and I was watching it get dark at night. And I felt completely useless. I couldn't look after my daughter like I wanted to. And then having this message out of the blue, a little moment of hope, it sort of reignited the fire in me to go, actually, this isn't going to be my ending. And so really, I honestly think the pageant saved my life because it gave me a new focus in my pain.

Let's talk about— let's talk about, you know, your health journey. Let's, let's give folks a context for your health journey. Because like so many people in this community, you were misdiagnosed. And unfortunately, because of your misdiagnosis, your healing journey was substantially longer. So why don't you give us a little bit about your background? Where did you grow up? What was your focus of study during the time that you were a child? And ultimately, after you graduated from what we would call high school, I guess you call it primary school in the UK. Um, and, uh, and, and talk about how you, you know, how your health, um, how your health journey, uh, I guess digressed, uh, from during— from your childhood to the point where you became bedbound.

So in hindsight, there's quite a lot of origins theories where I think Lyme could have come from. So before I was born, my mum had to have a blood transfusion in the '80s, and she had that from one of the hospitals which we now know is being sued because they weren't testing the blood for illnesses, and many people got autoimmune and You know, possible Lyme disease. So who knows, it could have come from there because from that moment my mum was very sick with autoimmune. Now also on the other side of that is my nan was very, very sick and she was diagnosed with TB and polio when she was 19. And she was put in an iron lung and she was very ill. Now all of us have got a history with steroids because the doctors unfortunately put us all on steroids. My nan was on steroids for 50 years, so she had no immune system whatsoever. So when I was born, so when my mum was pregnant the first time, my mum kept on developing rashes and they, the hospital told her that the baby would be very ill and they advised her to abort the baby, which broke my mum's heart. And she held that baby and she said it looked like a perfect baby. Now, when she fell pregnant with me, she got the same rashes, but she didn't tell the doctors cuz she so desperately wanted a baby. When I was born, I nearly died and I was in an incubator. And I had to have a lumbar puncture. And I had a very chesty cough. And they said, if my nan hadn't said to the doctors, please check this baby again, 'cause initially they said I was healthy. Please check this baby again. There's something wrong with her chest. They said I would've died that night. So my nan saved me. And I was in an incubator for a long time. And I was always an unwell child. I was always exhausted. I always had urine infections, kidney infections. Ear infections were awful. I had grommets put in my ears. And all the typical things that when you look back now and you go, God, most of them are Lyme and no one's looking for Lyme. Nobody did. I had terrible growing pains when I was a teenager. My periods were horrendous. I've suffered 6 miscarriages. It's just, it's been one thing after another, and no one has ever connected the dots. So as a child, I was always exhausted. And it wasn't until I gave birth to my daughter that I had an ANA tested positive for lupus, which what we thought was lupus at the at this— at that point. And I was then put on steroids, and I was on steroids for 12 years, and I just got more and more sick. And the more sick I got, the more they would add to my, to my medication. So I was on black box warning medications. I was on methotrexate, then I was on methotrexate injections, then I was on— what's the other ones? All the different named ones. Basically, I went through all of them, and I was getting more sick, and my kidneys were having problems because they were having side effects from all of the illnesses. From all of the medication. Sorry, I get terrible brain fog. That's one of the symptoms of Lyme that still lingers with me.

Yes, our listeners certainly understand.

Um, so yeah, I was just getting more and more sick. And then it got to a point where my hands began to deform. And I was working as a health professional at this point. I had my own business. I was doing people's feet. I had to hold a scalpel daily because I'd take off the hard skin, calluses, the corns, verrucas, everything. And I was starting to not be able to put my gloves on because my hands were beginning to deform. So I was told initially I had lupus, then it was connective tissue disease, then it was rheumatoid arthritis, then it was Raynaud's, then it could have been Cushing's, then it was osteopenia from the steroids giving me my bones thinning. Then I got osteoporosis because of the bones thinning from the steroids as well. And then they sort of just kept on with the rheumatoid, but none of the rheumatoid drugs were helping me at all, and I was becoming more sick. And obviously we know now that my immune system was coming down and the bacteria was managing to flourish in my body because I had no immunity. So that is when, when I became officially bedbound and wheelchair-bound and my hands were completely deformed, I had to give up my job. I couldn't hold the scalpel anymore and had to rely on everybody else, is when I finally went, I don't think these doctors know what's wrong with me. And it was, it was a rude awakening for me because my whole life whenever I had got ill, I always went to the doctors and I thought that they'd just be able to fix me. I just completely believed they'd be able to fix me. And the ironic thing is, when I was 19, I went to the Dominican Republic. I had lots of vaccines to go to the Dominican Republic. public, and they put me on doxycycline for preventative from malaria. And what I didn't realize is I had the biggest Herx reaction from the doxy. I started hearing voices in my mind, and I started getting really panicky. I had a panic attack on the flight, which I'm not normally panicky, and it set off this spiral of anxiety. And when I came back, obviously I spoke to the doctors about this, and I was put on every kind of benzo you can think of, and antidepressant, and you name it. So that obviously didn't help either because they don't go very well with, with Lyme. So it just, just sort of kept on compounding all the different medications until eventually when I was on my back and I had to look within myself what was wrong, that's when, um, my, my heart problems started happening. So I would have bradycardia where my heartbeat had gone so low down, and then it would go up to tachycardia. So one minute I felt like my heart was stopping, and then the next minute my heart's pounding like I've just run, and I've just been laying in my bed. So I was having this problem. I was in and out of hospital. I was living in A&E at this point, and they would just say, there's nothing wrong with you. Don't know what's wrong with you. They started to look at me like I was crazy. And they put me on all the machines for the heart, and I had a right bundle branch block, and I had a T-wave inversion, and they just didn't know what was wrong with me. And I remember I collapsed in A&E, and when I woke up, there was a doctor standing over me. And I said, please don't let me die. Please don't let me die. I have a daughter. Please just help me. And I was shaking and my body was involuntary moving.

How old were you, Kirsty, at that time?

At that point, I was 32, I think. 32. Please don't let me die. Please don't let me die. And this doctor stood over me and he went, you're just hungry. Like that. Like I'm mental. And he wrote in my notes that I was an attention seeker and that I'd thrown myself on the floor for attention. So I was obviously devastated at that. And I said to him, I'm a health professional, and you've just written that in my notes, and I'll never be able to get rid of that comment. So not only am I laying there shaking, but this man is mocking me. And I was fortunate enough that there was a lady in the waiting room, and she saved me. She said to me, do you think you've got Lyme disease? And I said, I don't know what you're talking about. And she said—

Okay, let's pause there. But let's pause that, Kirsty, because that's a really important— that's a really important, I think, inflection point. So Before we, before we get to your diagnosis, or at least the, at least the, the information coming to you so you could now pursue a diagnosis, I want to build out a little bit more about your, about your background. So you shared with us that you were, you were a sickly child.

Mm-hmm.

That your, that your, that your mom had, had taken a blood transfusion at some point before you were born, and that she was struggling with, she was struggling with with their pregnancies. And that's a very common problem with people who have Lyme disease, right? That, you know, that we actually had a woman in my community anecdotally who had actually lost 6 babies. And she was finally tested for Lyme disease by her OB-GYN. And it turns out she had Lyme. They treated the Lyme and she now has 3 children. You know, she— it's, it's, it's not uncommon for the challenges that your mother had for folks who have undiagnosed Lyme disease. So I want to focus on your mom for a minute. And so is it— did your mom ever travel to the US or, or, or leave the UK where she might have come in contact with, um, a tick or Lyme disease?

Definitely would have done before I was born. And I think she lived in Saudi Arabia at one point. My mom, she's had a very colorful life, bless her. But yeah, she, she was very sick most of her life as well, and they've diagnosed her now. I think she's got osteoporosis— no, yeah, osteopenia and osteoarthritis, and they say lupus as well. I'm trying to convince her to have a Lyme disease test, but I think with my mum, if she had Lyme, she'd think that she's to blame for why I have it.

Well, And that is one of the challenges that women, young women have, you know, when they are first diagnosed with Lyme disease. Many young women tell us that the first question that comes to their head is, will I be able to have a healthy baby? And we're going to focus on that together. But I want to stay with your mom for a couple of minutes. So maybe your mom came to the US, maybe she didn't. Maybe she came in contact with tick, maybe she didn't. But she also had the blood transfusion. It's important for us to talk about blood transfusions because blood transfusions are a way to transmit Lyme disease, right? And it's now become well established. And I can tell you that where we live in New York, when we donate blood, we are asked to fill out a questionnaire. And one of the questions we are asked now is whether or not we've ever been diagnosed with Lyme disease, whether or not we have— we've been diagnosed with Babesia. And it is a part of the screening even before they'll take blood. And they're also testing our blood. But this is only recent. It's only in the last couple of years they've been doing that. And it's only been the last couple of years where folks are, are in the medical community are acknowledging that one of the ways that Lyme disease can be transmitted is through blood transfusion, right? So I, I'm sure you raised that with us during the earlier part of this conversation we were having because you suspect that's probably how your mother became infected. Is that, is that why you brought it up?

I do, I do. And I, but I wonder if perhaps maybe she'd picked up, I mean, I will never know the answer to that question, but perhaps she added on extra strains that maybe were already there because my nan was so ill. She was so so sick. So I'm— I wish she was alive now and I'd have her blood tested to see if she had Lyme disease. But her symptoms are so similar to mine. And she was straight on the steroids. And I think she was the longest person to ever be on them and one of the first people to go on them. She was on them for like 50-something years. And they were really high-dose steroids. And she was so frail, but she was so strong. Will, you know, in her mind, she wasn't going to give up. And she still worked really, really, really hard.

So yeah, so Kirsty, there's another piece here to your story, uh, that I, I do want to focus on with you for a couple minutes, and that is, that is congenital Lyme disease. Um, when we first started doing this podcast, we certainly had many people argue to us that they believed that, uh, that, um, Lyme disease was a congenital disease. Um, and then we started to see some of the not-for-profits develop anecdotal proof that Lyme disease was a congenital disease. And 2 of the leading Lyme disease organizations, the Limelight Foundation, and it's Olivia Goudreau's organization, can't remember the name of it right now because I'm old and tired, but there was a second one. And what they were able to do is they were able to poll their— the members of their communities And they were able to tease out anyone who had, who had bitten, bitten by a tick, or somebody who had, you know, who had, you know, an identified contact with, you know, with Lyme disease. And what they were able to demonstrate was that a large number of their, a large number of their communities were in fact infected with Lyme during their fetal stage. And the good news is for our listeners is this past Monday night at the gala that you and I were talking about earlier, we actually met one of the leading researchers on congenital Lyme disease. And this past April, they published a study that is going to be the basis of a future podcast where they've definitively proven that Lyme disease is congenital.

So I could have debunked that for you because I passed it to my daughter. She's got it as well.

Yeah, I'm sorry. I mean, but it is, it is important, you know. So, um, yeah, I think—

It makes so much sense as well when you logically think that your baby is made of my blood and my bones. Why would she not have it?

Yeah. And, but I think that, I think there was this sense that the placenta would, would protect the, the baby from, you know, from this, you know, from this disease. And, and they, they've actually been able to definitively prove that, uh, that the Borrelia bacteria can pass the placenta and it can infect the baby. And many, many people who have Lyme disease are in fact, are in fact, uh, congenitally, um, you know, uh, contracting Lyme disease. So, your analysis is certainly being supported by more and more data. And it's important for us to discuss this, Kirstie, because, you know, for a long time, people have been gaslit when they've said they believe that they were congenitally infected with Lyme disease. For a long time, young women and pregnant women were gaslit when they said they had concerns about the possibility of infecting their child with Lyme disease. And when they were looking for prenatal care or pre-pregnancy care, it wasn't offered to them, right? So now, you know, with people like you sharing your stories and now the evidence-based research that we can share, we are now proving things like you can contract Lyme disease through blood transfusions. You can contract Lyme disease through, you know, Congenital, you know, through pregnancy. And another one—

I wonder about breast milk as well. Would breast milk maybe pass it through?

You were getting—

you might be able to escape the placenta, but then the breast milk, maybe. I don't know.

Absolutely. And there's more and more research supporting that as well. So can you talk with us about that? Were you a breastfed baby? And if you were a breastfed baby, do you think that may have been a place where you could have contracted the disease?

Yeah, I mean, I was a breastfed baby and I also breastfed my baby, so I definitely think it's a possibility. Um, and I actually took my daughter to LimeStop because I didn't want to put her on antibiotics and ruin her gut like had happened to me. So she had exactly the same strands when tested at LimeStop as me. So what are the chances of that? And the same with the bioresonance scans.

So let's talk about your, your, your, your illnesses during the course of your life, because you did share with us that at one point you were settled on a lupus diagnosis. Can you share with us, were there any other diagnoses that you settled on during the course of the time that you were treating for your various symptoms from the time that you were a child until the time you finally got to a Lyme disease diagnosis?

So I had terrible ADHD when I was a child. They used to just say I was the hyperactive child and don't give her sweets, she'll be hyperactive. But I also, and I tried to conceal this from a lot of people, my My OCD is awful. Um, I've got the just-right OCD, so if you watch this video back, you'll probably notice me doing it, but I have to tap things to make them even. If I'm turning the light on, I have to turn it on and off to the amount that feels okay. Um, I walk around sort of tapping my head evenly and my top, and my daughter's like, oh, Mum, you're doing it again, stop it. And then I have like crazy thoughts where certain words come in and they get stuck in my brain, but I've had that always. And I remember having a song in my head once, and it was Elton John's Step into Christmas. And just the bit that said step into Christmas stayed in my mind for three months. All day, it was step into Christmas, step into Christmas, step into Christmas. I thought I was going to go mental, and people would be talking to me, and all I could hear was this voice going, going, and going. And then it finally stopped, and we hit we hit December. It came on the radio, and I nearly had a breakdown. I actually was avoiding music for a long time because I knew the beat was going to be like bum bum bum bum bum bum bum in my head, or a song, and I'm trying to sleep. Insomnia. I've always had terrible, terrible insomnia. I'd always just be awake when everyone else is asleep. I couldn't understand how people just fall asleep. Um, tearfulness, and my daughter has that as well, just like this really sadness, like a deep sadness inside, and you can't pinpoint what that is. Um, eye floaters have always been awful, but the doctors have always just said that that's collagen in your eyes. But obviously we know differently now. Um, hair loss. My iron levels always been low. I've always felt like I'm trudging through like a swamp. Like, my legs feel so heavy. And my daughter has it as well, so she struggles with school, with PE. And obviously trying to get teachers to understand that she's got an illness is a whole other obstacle in itself. Hers has mainly affected her bladder, like it did me for a long time. So she goes to the toilet like 30 times a day, constantly needing a wee. So yeah, just things like that really.

So Kirsty, how many, how many different doctors did you see between the time that you first started to have symptoms? I know when you, it was in your infancy until the time that you finally received the Lyme disease diagnosis.

I mean, I can't account for when I was really young because I never started writing notes, but when I got really sick, I've, I've seen at least 40 doctors. Possibly.

Were you in the UK? You have a national health system or socialized medicine system. Were you treated within the system or did you have to step out of the system?

Um, at some point, yeah, I had to step out because, um, when I collapsed and the lady told me about— oh, we don't always tell you about that yet. When it was brought to my attention about Lyme, um, they refused to test me because I didn't have a tick bite or a rash. And I was adamant. I went in there, I'd Googled my symptoms, and I was like, I've got 20 of these symptoms, you know, out of 30, and I, I need a test for Lyme. And they were like, no, we're not testing you. You haven't got a tick bite, you haven't got a rash. And I was like, but I feel like this is really resonating with me, this illness. And they were like, no, it's definitely not going to be that. And I said, but Bartonella, like those symptoms, the intrusive thoughts and all of these things that are happening to me. And the doctor turned around and said to me, Kirsty, we don't have Barton dweller. in the UK. And that's when I realized, okay, we need to leave because we're not going to get anywhere.

Yeah, so the, the Bartonella portion of the story is certainly one that I want to develop with you. Before we get there, um, so the, the 40 doctors that you saw before you diagnosed, were they all a part of the, the socialized medicine system that you have in the UK?

I was lucky enough to have private healthcare as well. But yeah, I saw hormone doctors, ENTs, rheumatologists, radiologists, cardiologists. I saw 3 Cardiologists, who else? Gosh, just I saw so many doctors. I've got a whole list of them somewhere. None of them would test me for Lyme, and you just get a different diagnosis with everything. So IBS was one.

No, of course, because they wouldn't test you for Lyme until you asked them for that. But long before you came in contact with this portion of the story, we're going to develop in a couple of seconds. You know, you were you certainly didn't even have Lyme in your head, right? When's the first time you heard of Lyme? Was Lyme disease something you heard of the first time when? you were when you had that experience in the hospital?

I had never heard of it to ask for the test, but it scares me that this illness is, is one that imitates many, and it's not on any of these doctors' lists to test someone for that. And I want to make it so that it's a first-line test. I'm currently setting up a petition for that. So I, I think it should have been on a tick-boxing exercise when they're taking between 9 and 12 vials of blood out of me a month. I'm surprised I had any left, and they've never tested me for that. Any of them.

So is, is there, is there an official policy or position, uh, or an official stance, uh, in the, um, in the socialized medicine system in the UK, um, regarding Lyme disease?

They literally want you to either have a bullseye rash, plain as day, or actually seen a tick or brought a tick in. But actually, in my journey with helping other people with this, Some people have gone in with the bullseye rash and they're told that it's a spider bite and given nothing then. So I've had to go, uh-uh, you go back with these guidelines, you tell them you want the doxycycline. So how many people haven't I spoke to that I've been able to help like that and have just walked away not knowing that the acute stage of Lyme is now going to be systemic and chronic in a few years?

Well, so let's talk about that piece of your story. We, I'm starting to call this element of our Lyme disease interview the Phyllis Bedford element of our interview. And, you know, one of the blessings about The event we were at on Monday was Phyllis Bedford was honored by the Lyme organization that held their gala on Monday. And one of the things she shared with me was that she's often told by folks who listen to our podcast that I often quote Phyllis Bedford. And how I quote her was that she describes Lyme disease as a supermarket disease where you're more likely to be diagnosed in the supermarket than you are by a doctor, or you're more likely to be diagnosed in the supermarket by someone like you than it is if you're going to be in your doctor's office. And that was your, your experience with the journey, right? You were sick. You went to see at least 40 doctors. You settled on, or they settled on, a number of different diagnoses, including, including lupus and crazy. And finally, finally, you know, some third party, a non-medical professional said, hey, You may have Lyme disease. So talk to me about what that experience is like where you're now hearing about a disease you've never heard of before and, um, and perhaps this is an answer to, you know, your long diagnostic journey.

I forgot to mention that they also said I had fibromyalgia. So, so the journey from Lyme, once she told me about the Lyme disease, um, it sort of all started to fall into place for me. Now at this point I'd had a blood test whilst I was in the hospital that showed My iron levels, my ferritin levels, and the other crazy thing is in the UK your ferritin levels if it's 50 or 150 you're classed as normal. But in my opinion, somebody with a ferritin level of 50 feels very different to someone of 150 in terms of energy, etc.

For sure.

Now I was told yeah, I was told that my ferritin was fine. However, I asked for them to give me a a printout of my blood. 4, and my ferritin level was 7. So I went and found an iron specialist, and I paid for an iron infusion because again the doctors declined to give me one. They'd just give me the iron tablets, which were really upsetting my gut. Um, and he said, I don't even know how you're standing upright. Um, and so he booked me in for an iron infusion, to which the very— and I very much believe in, um, you know, angel numbers. I see them everywhere. And, and the world giving you like little hints in life. Now, when I got the train to London and I went to the Harley Clinic for the iron infusion, I couldn't get past the gate because there was a bike blocking it. And on that bike, it was bright green, said Lyme on the bike.

Oh, really?

And I was like, oh my God, I had goosebumps all over my body. This woman had literally told me about it a few days before. It was playing in my mind. Do I have Lyme? Do I have Lyme? Oh, give me a sign if it is something like that. Booked this iron infusion, and I couldn't get in the door because the Lyme bite was blocking me. So I was like, yes, there's definitely something to this.

Yes. So did you do any research on Lyme disease? I mean, what what did you you know after after this Lyme diagnosis? And of course, now you're now now you know now the universe spirit is sending you signals, and now you're seeing this the sign with Lyme on it. What did you know about Lyme, and and and what was What was your, you know, your sense, uh, not what your spirit was telling you, because it sounds like, you know, your spirit was telling you that you had Lyme disease. But before, before you got that, that, that spiritual confirmation and that sign was, uh, was, was put before you, what'd you think when, when the other person said you had Lyme disease, you may have Lyme disease? And what did you think about, you know, what did you find out about the disease before you were diagnosed?

So as I said, I've got insomnia, so I think I sat up for like 3 nights looking up Lyme, joining all the communities, reading all about it. And I remember at one point reading the symptoms and just crying because I'm like, oh my God, this is everything I've experienced, even down to like the brain zaps that I was having. It felt like my, like my brain had something jolting in it all the time at nighttime. Um, and, and, you know, the eye floaters and all of those things that were there that no one could really give me answers to. It was just like a complete confirmation, like, I'm not crazy, this is something. And one thing I forgot to mention was I was trying to run my day job and I was working a night job and I was pushing myself and I was exhausted and I was having no help at all financially from my daughter's father who's never helped me with child maintenance. And I actually escaped that very abusive relationship. And I'll come to why I think that there's a direct correlation between trauma and Lyme later. But where was I going with that? Brain fog.

Well, let's, let's stay with that because I think you're, you're mentioning another important thing that we need to explore. which is the impact that trauma has on your immune system. And, you know, does the chicken come first or the egg come first, right? Because what you were talking about with your grandmother and you were talking about with your mother, um, and ultimately now you and your daughter, is, is a question of did you ultimately become sick because you were introduced to the Lyme bacteria or some of the co-infections, um, or Were you immunosuppressed as a result of either genetics or immunosuppressed because of events? And then when you came in contact with the Lyme bacteria, your immune system couldn't fight it off. We always have this chicken and egg question of, is it the bug? Is it the terrain? And then, of course, from the standpoint of trauma and whether it be ongoing trauma or a traumatic event, What we find all the time is that folks come in contact with Lyme through a tick bite or through some other form. Again, and now we— that you and I have sort of gone through the whole gamut of was it a blood transfusion? Was it congenital? Was it breast milk? Was it a tick bite? Was it sexual contact with somebody who was infected with Lyme disease? We didn't talk about sexual transmission, you and I, but we got through these 4 of the 5 in this interview, right? So you can have any of those different, any of those different, um, any of those different, um, uh, contacts with Lyme, uh, and now you, now you are either in the midst of a traumatic experience or you're dealing with post-traumatic challenges that are now suppressing your immune system, right? And now you have this introduction of these bugs and your body can't manage it because your immune system is being suppressed By the, by the traumatic experience.

That's right. The real tipping point for me, so obviously I had my hands deforming and I had the exhaustion and I'd have days where I couldn't get out of bed even before I became bedbound. But the real thing for me was the neurological, like the anxiety that came and the insomnia. And I was going weeks on 1 hour sleep a night. And then I would wake up in the middle of the night, jolt upright, and I'd be in complete panic, like someone was coming after me. And I'd have sweat pouring off me. And now obviously it was probably Babesia and Bartonella. But at the time, I didn't know what was going on at all. Now, I went to the doctors and I said to them, I am so full of this fear and anxiety. And naturally they said, right, we'll put you on the antidepressants and the benzos, which they gave me, which made me much worse. I'd never had intrusive thoughts like it. All of a sudden, a couple of days into taking these medications, I remember I was cutting up an avocado to make a sandwich for my daughter. And in my mind it went, just cut your wrist. And I was like, I don't want to cut my wrist, what do you mean? And then my brain was going, cut your wrist, cut your wrist. And I was so scared, I put the knife down and I went upstairs and I cried on the bed. I was like, oh my God, please don't let me hurt myself. And they got worse and worse and worse. And it was like, if I had to go on a train, just jump out there, just smash your car into this, just do that, just do this. And I went to the doctors and I said, I'm having all these intrusive thoughts. And all they did was change the antidepressant. So I think I went on about 7 or 8 different antidepressants, coming off And it was getting worse and worse and worse. And it got to a point where I hadn't slept for 3 days straight. And my husband woke up in the morning and he said I was sitting in the bed rocking. And I looked at him and I said, do you think if I jumped out the bedroom window it would kill me straight away or I'd have to do it again? And he was like, oh my God. And he said I was white as anything. The dark circles under my eyes were awful and I hadn't slept. I was shaking. My heart rate was so high. It was awful. So I went to the doctors and I said to them, I think I'm going to harm myself. I'm not well. Oh my God. I'm so scared. Like, I'm not suicidal, but these thoughts are really scary and I can't sleep. They took me into the mental health bit. They gave me an assessment and they said to me, well, you're here asking for help, so you're obviously not going to do anything. And they gave me one zopiclone sleeping tablet and they sent me home. And I slept for maybe 4 hours and I just thought I was going to lose my mind. I didn't want to be around anyone. I locked myself in my bedroom. And it was at that point I had private healthcare And we made the decision to put me into a psychiatric unit because we thought I was just lost the plot. So that was the scariest low point of my life. And obviously, when you're in a psychiatric unit, they just assume you're mental. Um, which is why I think that doctor stood in front of me and went, you're just, you know, you're just hungry because he'd seen on my notes.

Yeah. Yeah. Your story reminds me a lot of Ali Hilfiger's, um, story, uh, where ultimately her dad, Tommy Hilfiger, the very successful designer and very wealthy, um, you know, Very wealthy designer. He actually had his daughter institutionalized, and it was actually in the institution where she was diagnosed with Lyme disease. That's where they discovered what was wrong with Ali. And again, I certainly urge folks to listen to our interview with Ali or read her book Bite Me, because it was actually in an institution where she was diagnosed with Lyme disease. And when they treated her for Lyme disease, guess what? All of her, all of her mental health issues dissipated, and Ali became the very successful person that, you know, she is today. So this unfortunately is not an uncommon part of the story, which is why it's so important that we train all healthcare professionals, right? We need to train our school nurses so that when children come to them and they're showing the diagnosis, that the school nurses can help people. We have to train our primary care physicians so that when people are coming in to see them, they can. And we have to train our mental health professionals because when folks come in contact with them because they're having challenges the way you did, that they have to think that there is some physiological connection to the to the mental health challenges and the voices that you were hearing to hurt yourself, uh, were, were driven by, were driven by, um, in your case, uh, an infection.

That's right. So I spent weeks and weeks and weeks in there, and I wouldn't see my daughter because I was so scared, because I didn't want to harm her, and I wouldn't. But the thoughts being there, it was like there was someone foreign in my brain. So I just, I couldn't be near anyone that I loved. And it was, it was at Christmas time, and I was so low. Um, but I was fortunate enough that the psychiatrist that was in there was very open-minded, and I've actually spoken to him since and told him, you know, all those things I was having, they're gone now because I had Lyme disease and I fixed it. And he said to me, oh my goodness, I am actually going to go through my books and work out all the people that couldn't respond to the antidepressants like you, and I'm going to ask them if they'll test for Lyme. So we're fortunate that there's a man out there that's open-minded enough to do that.

Yeah, one more thing I want to explore with you before we get to your Lyme diagnosis, and that is that you were asking your medical professionals to test you for Bartonella.

Yes.

And it sounds like the response you had gotten was that there is no Bartonella in the UK, which sounds strange to me because Bartonella is cat scratch fever. Cats, you know, who are infected with fleas often step on the fleas and they all, they get the bacteria on their claws. And in many cases what they're doing is when they're coming, even when they're kneading on humans, they'll be injecting Bartonella into the skin. So Bartonella is, you know, you can get from many other sources. It's a really, really nasty bacteria. And in many cases when somebody has come in contact with other types of of, of, um, tick infections. They may have gotten the Bartonella from a tick, they may have gotten Bartonella from another place, but then the Bartonella will then dogpile on your immune system with the, uh, Borrelia and the Babesia and all these other things that, you know, we get. So I'm kind of surprised that they wouldn't even do the Bartonella test, because even if you haven't been bitten by a tick, it's very common for folks to have Bartonella. And when you're starting to have the kinds of mental health challenges that you're having and the rage that you, you were feeling that you, you were going to be infected with Bartonella, but they weren't even going to test you for it?

They wouldn't test me. And actually, I did have cats, and I had rescued a cat a few months before this, um, and the cat had scratched me. I've got a picture of it. It scratched my arm, and there was this huge, like, big wound on my arm only a few months actually before I got the, the idea of Bartonella. So again, potentially from that as well. We've got all of these catalysts that could be— who knows? But, um, yeah, always been around cats.

So share with us now how you finally get your Lyme disease diagnosis. You, you're on this journey where you were, you know, where, where, uh, where I'll, I'll use my way of describing spirit. Everyone has their own way of doing it, but God puts somebody in your life and tells you, hey, you, you sound like you have Lyme disease. You then, you're now going for another test unrelated to the Lyme diagnosis, and now you're seeing a sign with Lyme disease. And in between that, those two, those to, um, windows of time. Uh, you're studying the heck out of Lyme disease. You spent 3 whole days studying Lyme disease. You're now joining the groups. You're now getting validation from, from the other people that you come in contact with. They had very similar symptoms. Now, for the first time in your life, you know, your spirit is telling you this is the answer. You know, you've gone through years of medical treatment, years of, of doctors, a number of different diagnoses. They even diagnose you with a disorder, fibromyalgia, which is not a disease. It's essentially— what fibromyalgia is, is doctors saying you are symptomatic but we don't know how, so they throw up their hands like, all right, you now have fibro because we can't figure out what's wrong with you, right? So you've had it all, but you're—

It's a bit like functional neurological disease, isn't it? FND. That's very similar to fibro, isn't it? Another list of symptoms that we don't know where they're from, so we'll give it this name.

Yeah, yeah. I mean, what they're doing is they're just, you know, That I think it's just, you know, when we have these different types of disorder diagnoses, I, you know, I just, I just describe it as, you know, medical cop-out. You know, it's the medical profession just saying, we're not going to look any further. We can't figure it out. We're not going to be creative. We're not going to put the time in to try to get these people better. We're just going to give them this diagnosis of this disorder rather than disease. And we're just going to let them walk around with that label and give up on us, right? I mean, it's just, I just I just consider it medical laziness.

Yeah, I agree with you. So the lady in the waiting room that said, do you think you've got Lyme? And then we— I told her all my symptoms and she was like, they're all Lyme. I stayed in contact with her and, um, I had my iron infusion. And after I had my iron infusion, my body warmed up straight away for the first time in goodness knows how long. I've always been cold and I felt warm and I felt great. But a couple of days after that— and I slept for 14 hours after my iron infusion as well, 14 hours straight— and I was I felt like a new person, but I still had all my body pains and everything, and I still had this anxiety and this song going around. Anyway, about 2 days after that, the symptoms got really bad, really, really bad. The intrusive thoughts were like, kill yourself, kill yourself, kill yourself, kill yourself. They were so bad. I was just so terrified. I just wanted to die because I didn't know how to live like that. It wasn't because I didn't want to live, it was because I didn't feel like me. I just felt like there's something in there. And I messaged this lady and she said, listen, I'm going to Mexico because I've got Lyme and I know that's the best place to get tested and treated. Do you want to come with me? It's coming up to half term. Your daughter's going to be off school. It's almost aligned. Just come. So she was like, speak to this man in Lyme Mexico. The Lyme Mexico, the man who owns that is actually part of the ILADS now. And I had a phone call. He's actually part of ILADS, Dr. Morales.

I know him very well. Dr. Omar Morales. He's been one of our past guests and somebody I've actually met several times at the ILADS conference.

So I arranged a phone call with him. He rung me and it was about 3 o'clock in the morning my time because I didn't care because obviously I had insomnia. I was just so desperate to talk to this man and he gave me so much validation on the phone. And I said, why do I feel worse since I had the iron infusion? And he said, because if you've got Bartonella, you've just given them the feast of their life.

They love iron.

That's why. And he was like, that's the worst thing you could have done. I was like, but surely you have to feed me. I'm dying here with no iron. So he was like, don't worry about it. Just come out with your friend. And she'd booked in already. And I will see you. And I was just so excited to get on that flight because I thought someone's finally listening to me for the first time in my life. I'm not being told it's all in my head or it's down to an illness that doesn't align with me at all. And I never believed the theory that you have to suppress your immune system. I never got that. Like, why would you? You want your immune system to be really strong. But, um, so off I went out there and he did the blood test. I paid for the blood tests and it came back whilst I was out there that I had Lyme disease. I think it was about 4 strands of Lyme, Babesia, Anaplasma, and Bartonella. And I just read this and I was shaking and I was just so happy that I finally had, uh, you know, in my hands what's wrong with me. But then I felt terrified at the same time because I'd read all of these horror stories of how no one can get better and it can kill you slowly and all these things. So it was sort of like bittersweet. And I was out there with her and my daughter, but I sort of tried to keep my daughter away from it because I didn't want her to worry too much. And her stepdad. And yeah, then I went into Lyme Mexico and he talked to me about encephalitis, which he thought I had, judging by my symptoms. I sat in his office and I cried and cried. Um, and we went through like protocols that I could potentially do. And yeah, it was the first time I ever actually felt validated.

So, uh, and I want to, I want to build out, um, how you're feeling and the contrast between the euphoria that comes along with, uh, having a diagnosis and then the absolute fear that comes along with having a diagnosis which may not permit you to get better. But before we get there, let's Let's let's focus on the type of testing that Dr. Morales had done. He's a brilliant guy. You know, I think he's a fantastic doctor. I really enjoy all the contact that I have with him. But tell me, tell me what tell me again what was it like to first come in contact with Dr. Morales? And and what testing did he perform to ultimately give you your your diagnosis and the Uh, list of germs that you were suffering from?

So it was so nice to meet him because I'd seen videos and pictures of him because obviously I hadn't slept. So I just researched so much about him and his clinic, and then seeing him, it was almost like seeing a celebrity because it's like, oh, this person's going to actually understand and not think I'm mental. So it was, it was, I think I was shaking in the waiting room, just feeling like I could be on the right path finally for the first time in my life. Yeah, and just him literally nodding to everything I was saying and telling me, yes, I see this every single day. Yes, that is a symptom. Yes, this is a symptom. And it's just finally made sense. It wasn't lots of different illnesses broken down, you know, through my life. This has actually been it the whole time. And it's just got worse and worse as the suppressants have taken my immune system out. So yeah, it was— I'll never forget that day.

So what, what testing did he use? Did he use—

So he used— he did the Western blot, the ELISA test, and he did some other tests because those ones I don't think cover Anaplasma and Babesia. Um, I'll have to find them actually. Maybe you could put us— you could put a screenshot up of them or something.

But do you know if he used— was it a specialty lab that he had used for testing? Were you using Igenex or some other specialty lab?

It was a specialty lab and it was in— it was based in Mexico. And they had to be taken from the minute that it'd come out my arm, I think, and taken to this specific lab. And they came through, I think it was about a week and a bit later. And it was very detailed in everything that I had. And I was actually shocked because I just thought it was Lyme and Bartonella. I'd never heard really of Babesia at that point. I think Rickettsia might have been on there as well. Anaplasma, definitely. And it was just positive, positive, positive. And I was just like, oh my God.

Yeah, no, you had the full boat, right? And, you know, Ehrlichia, Anaplasma, they're just a bunch of nasty bugs that will all, you know, dogpile on your immune system. And of course, you had a lot of other immune suppression that you were dealing with. You had the traumatic experiences with your relationships. You had some other traumatic experiences you were dealing with. They were constantly pumping you up with steroids. And of course, we know what steroids does to the immune system. It does suppress the immune system. And that's a very common mistake that doctors make. You know, for the, for the, you know, used correctly, steroids are fantastic, right? I mean, they do speed up healing. But of course, in many cases, when we have a rash from Lyme disease, dermatologists and some primary care physicians will misread the rash and then then prescribe you, um, prescribe you with, um, you know, with, uh, with the steroids. And the steroids will suppress your immune system, and it'll cause you to get sicker rather than better, right? So you were— you, you had a course of steroids for many, many years. You had all these, you know, immunosuppressive events going on in your life. Um, you have doctors gaslighting you, people, um, you know, institutionalizing you. I mean, all kinds of things are going on in your life. Um, and now And now we finally have a definition of what's really wrong with you. We have a list of all the bugs that you're suffering from. And now you have the euphoria of a diagnosis, right? And generally, generally, you know, when we have the euphoria of a diagnosis, we feel good about it, not only because it answers the questions that we're, that we're, you know, that we've been living with, you know, in your case for many, many years. But we also think once we have a definition of a problem, we can come up with a solution. But that wasn't your response. Right? You didn't think, hey, you said, yes, this is valid, this is validating. But then it was, holy cow, I have this really terrible disease, and am I going to be able to get better? And, you know, so talk to us about that, you know, that sort of, you know, that up and down of your emotions when you got the diagnosis.

So, yeah, so once I'd spoken to him and I felt really validated about what it was, when he said he thought I had encephalitis, that terrified me because I'd seen that film, which I think is called Brain on Fire. Um, the girl, and she literally is paralyzed in the end and she just cannot move. And she's lucky that one doctor manages to work out what's wrong with her and he saves her life. But like, she— her whole body couldn't move, and that was terrifying for me. Um, but when the blood test came through positive, I was— it was bittersweet because it was like, right, this is what it is. I've got this to go back to the NHS with now. They wouldn't even test for this stuff, and now here it is, plain as day. Um, hopefully they're going to help me now. But after looking at all the communities, I realized they don't really help anyone with Lyme long-term. So it was like, oh my God, this is a rich person's disease and I'm not made of money. How am I going to treat myself? And it was going to cost thousands. So it was like, what do we do? How am I going to do this? And we'd not long been married and we ended up canceling our honeymoon to the Maldives and putting it all on stem cell treatment. to try and fix my body.

Um, that's, that's a really cool husband.

I know. He was like, oh, I could be in the Maldives. Bless him. I know. But he was in Mexico, to be fair.

All right, so, so you, so you were, you were away, but it was, uh, you, you were—

But it wasn't really a holiday. It was a survival holiday, in all, in all honesty. It really was. And I had a terrible needle phobia at that point. And I had to get over that pretty quickly because I went on to plasmapheresis, which is where they put the tube in your arm, they take loads of your blood out, they put it through a filter, they remove the dirty plasma, they call it, they put it back in the arm. And then actually, after those, I started to feel really good and lighter. Then I had ozone.

Um, and was this all at Dr. Morales's clinic?

It wasn't. I went somewhere else because it was slightly cheaper. Okay.

So before we get, before we get to the new place, what other than being diagnosed by Dr. Morales, did you get any treatment there that had any positive impact on you?

He had the biggest positive impact on me, to be honest. He was the first doctor that's ever heard me, listened and validated me in my life. And he had such a kind heart and he had the time to sit there and listen to me. And, you know, he really changed my life, especially when he phoned me in the night and talked to me and, you know, said, what'd you go and do an iron infusion for? You know, you just fed that Bartonella and everything. I got on that plane because of that phone call, because I confidently knew that I was going to come out with an outcome either way. And, you know, he just listened and he really heard me.

So did you treat at all with Dr. Morales, or did you leave right after you got your diagnosis?

No, I didn't in the end, because we moved to a different part of Mexico and my friend started treatment at this other clinic. that also knew about Lyme disease, and we got like a deal for both of us to do it. And I just couldn't afford not to do that. It was like a— not a 2-for-1, but it was a lot cheaper if we were to do the treatment together. And she'd already started her treatment at this other place.

So what was the name of that clinic in Mexico?

So that place is called Immunotherapy.

Okay.

Um, and that place, yeah, they were lovely, and they, they helped me with the Lyme as well. They did stem cells. They injected stem cells into all of my joints, all my fingers, because my fingers have been deformed all over my body. I had plasmapheresis and I had ozone therapy as well. And I stayed there for quite a few weeks having this treatment every single day. And yeah, I began to feel better. Okay.

So how did you— how long were you in Mexico before you came back home to the UK?

So I went out in February and my daughter came back for school with my partner and I think I got back until end of April. So I stayed there quite a long time having treatment. They even did, um, like a lumbar puncture type thing on me where they injected stem cells to try and help with the inflammation in my brain. That was horrific. I've never had headaches like that in my life. And my friend who I'd met in the hospital, at one point after that, I couldn't even open my eyes because the migraines were so bad, and she guided me across this really busy road with my eyes shut because I just couldn't even open my eyes to get back to the clinic for more treatment. And we both had such positive results from the clinic, definitely.

All right, so what was your, what was your health like when you got back to the UK? Were you, were you 10% better, 20% better, 30% better? And I don't just mean emotionally better because you now have a diagnosis and you're validated.

I mean, how are you physically So I felt much better in my body and I had energy and I felt lighter. My hands, which were deformed, started to straighten to the point where I— my wedding ring was on my left finger, my right finger, because my right hand was better than my left. And after they'd injected all these stem cells in, they started to straighten and I was able to take the ring off my right finger and put it on my wedding ring finger, which I'd never done before. So they were starting to heal. The issue I had coming back was that I had a lot of pain. was I lived next to a power pylon and it was dangerously close to the house. And I believe that the EMFs coming off of that caused issues with tinnitus and my body. And I could feel, if I stayed there a couple of nights, I felt buzzing through my entire body. My heart would pound like mad, my tinnitus would be loud, my migraines were loud. So I think that that treatment would have been much more effective had I never gone back to that house again. But I wasn't in a position where we could move. And I honestly believe that that power line pylon killed my cat because when we moved into that house, she began having seizures and she'd never had a seizure before. And I mean, it's dangerously close to the house. I'm not in there anymore, thankfully, but because I had to stay there for at least another year, every time I went back there, I ended up staying at family's houses and friends' houses just to be away from the pylon.

One of the things that, you know, we certainly recommend to folks who are on a Lyme disease journey is that, uh, they, uh, they become aware of all of the different immunosuppressing, um, inputs that could be a part of their, their living experience, right? Um, uh, what kind of EMFs are in the, in the, um, area where you're living? Uh, is there mold where you're living? Are there, are there other chemicals, for example, in your carpeting, uh, that could be, uh, that could be impacting you. Um, you know, what kind of food are you ingesting, and, and are— is it whole foods, or are there a lot of preservatives in your food? You know, um, are you, are you in an environment where you can't sleep well for various reasons, and therefore, um, you know, um, you know, putting more stress on your, on your, um, on your immune system? Are you wearing makeup, and what kind of makeup are you wearing? Are you wearing chemicals on you? You know, you're putting chemicals whether they be perfumes or colognes or, you know, we, we have to explore the entire environment that we're living in because that's going to have an impact on all terrain. And it sounds like in your case, um, you know, you were in a place where there was substantial immuno, um, you know, stress put on you as a result of, as a result of the EMFs.

That's right. And my, my daughter calls me a crunchy mum because I worry about everything like that. Pesticides, I only buy organic. The toilet roll is not allowed to be bleached, it has to be the brown toilet toilet roll that's got nothing on it. You know, my toothpaste is the, um, I can't remember the word beginning with H. It's specifically designed to not have fluoride in it. My toothbrush is made of bamboo. My deodorant is like salt and lime. It's like everything now. You have to be like it. You have to. But she hates it because I'm like, I can't have this.

Yeah, no, it's brilliant. You have, you have to do that. We, and we all should be doing that, right? Because we don't know when we're, when, you know, They're going to be stresses in our lives that are going to cause us to have a terrain that will make us vulnerable to these diseases.

Yeah, that's right. So the pylon— and a lot of people thought I was crazy when I kept saying about the pylon, but then my husband and daughter started to get the migraines as well. So I was sort of like the canary in the coal mine, if you like.

I could just feel it as soon as I pulled up.

I could feel it like this buzzing in my body. And actually, when you open the car door and it was a windy day, all you could hear was Right next to the house. Like, it was, it was quite daunting really having that near you.

Well, it's not surprising to me that you were the person in your family who was the most affected or affected the earliest because you had the most compromised immune system.

That's right. So we had that battle. Then I started looking into root cause, um, and I watched the documentary about teeth and I realized I had, I think it was 8 root canals in my mouth and an amalgam filling. So of course I had to lose those because if I wanted to get well, I had to lose them. So I had my teeth taken out, which was horrific but needed, because I did that when I was literally wheelchair-bound. And the dentist I went to was a biological dentist, and he said he'd seen people that couldn't move and were paralyzed, that when they removed certain root canals, were able to move again. So he was like, we don't have to take them out, but if you want to try, we will. And he took them out for me. And on the cone beam scan, you could see there was infection through all of my jaw, like really badly. And I was like, just pull them out. And he put, I think, 12 injections in my mouth and I could still feel everything. And he said, I can't give you any more, but I can tell you now that you have an infection because you can't numb an area that's really infected. And I was like, just pull them out. And I held on to the nurse's And he yanked all the teeth out, and I felt them, and I had tears coming down my face because I had such a release in my body. Um, and he had me on a vitamin C drip, and, um, yeah. And then he dug right down to the bone, and he did ozone and cleared out my whole jaw. But when he pulled one of the teeth out, just this dark stuff was oozing out of, of my jaw. And he was like, I think we made the best decision for your health.

Oh, for sure, right? I mean, and we know that spirochetes in particular will go into the— into your tooth cavities, and it is a place where spirochetes will ultimately be found, right? So thankfully you were brave enough to do that. That was very brave, and clearly you're a tough gal because you were, you know, you were having teeth pulled out without any numbing, which I can't imagine what that was like. But, um, thank God you were able to do that and benefit from that. So talk to us about how you went from being wheelchair-bound to now, um, you know, where you are today. What was that— what was that progress like? Um, and then, you know, I do want to circle back to, you know, the inspiration, which was, um, which was, uh, you being invited to participate in the, um, in the pageant again.

So I've definitely skipped, uh, skipped a few steps. So After Mexico, I felt great for a few weeks, but then I started to get sick again. And I think that was because I was still on immunosuppressants, because the doctor said I had to be on them forever. And I was living next to the power pylon, so, um, I just became more and more sick. So then I managed to find a Lyme doctor in the UK that would prescribe antibiotics, and I went to them and they put me on— I think I was on about 7 months of antibiotics, 3 different kinds, 3 times a day. And I think that that is what cleared up my intrusive thoughts and everything. Those antibiotics helped me with that. Um, but I got gastritis and I couldn't cope after 6, 7 months on those. My stomach, the pain I was having, and I was having bleeding and things like that. So I had to come off them, unfortunately. Um, and then I had to do a lot of work with probiotics and things. But I changed my diet so much. I went from vegan Like, you name it, I tried everything to get well. Frequency healing, magnet healing. I spent £70,000 on my health through those years trying to get well.

Wow.

And put us in debt. I bought a sauna for the house so that I could try and detox. Um, I spent all my life savings, and then, you know, we'd spent it all, and then we ended up getting into debt trying to heal, seeing all of these different specialists. And what I actually realized— oh, I became so sick, especially after the antibiotics, I started to get paralysis where I couldn't feel my legs and I couldn't stand up. And my legs would— my knees would swell up like watermelons. They were so big and full of fluid. I was dragging them along. And at one point, I was in so much pain in my body, all I could do was just move my neck slightly so that someone could put painkillers in my mouth. And then I'd move back and just lay there and hope that they're going to help. I started to lose control of my bladder. It really spiraled. quite quickly. And I even thought about dignitas at one point. If I didn't have my daughter, I think I would have gone to dignitas because I was just in so much pain and I just didn't know how to survive in it. I had to give up my job. I lost my identity. I was missing all of her school plays. I couldn't drive her around anymore. And I could see what it was doing to my husband and having carers coming in and looking after me. I just couldn't see a way out. And it was at that moment when I was laying flat on my back and I had no other option than to look inside me and realize that I was the tunnel at the end of the light— at the light at the end of the tunnel— to save myself. Because I was telling myself subconsciously, by having all of these different treatments, that I was broken. And so I was so dysregulated because I'm thinking, I'm broken, I need to be fixed, I've got to do this, I've got to do this, I've got to do this. So I was permanently in a state of fight or flight, which was causing such inflammation in my whole body Um, and I began looking into Dr. Katz's Primal Trust and how the danger cell response happens. And so all the treatments that I had been having weren't working because my body was holding on so tight to everything because I was so shut down. And I found that so interesting. So then I started to self— do self-hypnosis in bed where I would imagine myself being able to walk again and be healthy again. And because I know now from being qualified in hypnotherapy that the brain doesn't really know the difference between reality and what you're imagining, that my body started to cooperate finally with me. And I wish I'd known that before I'd spent all of the money, that I could do that for myself. But, you know, learned now. And, um, yeah, so then my story went viral. All the papers got hold of it. The New York Post got hold of it. I was having doctors from Russia, Germany, Belgium, you name it. China had videos of me on YouTube. I don't know what they were saying. I could just make out my name. Um, about how I had been so ill, and they'd come up with, from beauty queen to bedbound, because obviously they'd seen that I'd been a beauty queen in 2015, and this woman's life has been ruined by Lyme, and she's been misdiagnosed and everything else. And because it went so viral, the pageant reached out to me and they said, I'm so sorry that this is your life now, and you know, if you get well, come back. And that was the driving force for me. I set up my TikTok account Called it Bedbound to Beauty Queen. I gave myself 365 days to get well, and I self-hypnotized every single day to be able to get up onto the Zimmer frame, to start walking up and down my room. And I was so proud of myself just for being able to do that, to then taking a walker outside and walking around with that, and then go to a walking stick. And I promised myself within 1 year I'd be on the pageant stage. And all my carers and everyone that was seeing me was saying, Kirsty, don't put that much pressure on yourself. You know you can't do it. Look, you can't even stand up. You can't do anything for yourself. And I was like, stop. Just don't fill my head with that. I'm gonna do this. Um, so I would literally— I would, on YouTube, I would play audiences clapping noises, and I put them next to my pillow, and I closed my eyes as if I'm on that stage and they're all clapping because I'm up there. And I would imagine my daughter being proud of me, where she was having to see me in hospital all the time and wondering if Mummy was going to die, to being proud of me that I got up there. And so I did that for a year.

Yeah.

And then, and then I went back.

So there's 2 pieces I want to explore with you now. These, these final pieces of your healing. So you received your diagnosis, you went for treatment in a number of different places, you were improving. And you shared with us that the Primal Trust protocol that you use with Dr. Kathleen King's protocol, but it was one of the tools that you would use.

Mm-hmm.

Um, and you, you had said, I wish I had that earlier rather than later because I think it might have been a shortcut to my healing. At least if I was not in fight or flight, if I was able to regulate my, um, my nervous system, I believe I would have been healed faster, or I may not have had to spend so much money. And, and I, I want to issue a challenge to you to think about that because, um, we, we urge the followers on our podcast to think about a framework we use here at Tick Boot Camp, which we call PAR. And what we've seen is the people who are ultimately successful and overcome their challenges with chronic Lyme disease, they go through a 4-step process. When they go through a process of prehabilitation, which is the P, they then go a process of assist your immune system by reducing the microbial load through various tools, whether they be herbal or antibiotics or a combination. Then they go through a rehabilitation phase. And one of the most important parts of rehabilitation is rehabilitation— rehabilitating your brain and, and, and helping your brain rewire so that it is not the brain that was supporting you when you were sick, but those neural pathways have to be, have to be rewired And in many cases, people are still symptomatic even though they no longer have the bugs in this system, even though they've been successful with the prehabilitation and the assist phase, but they have to rewire their brain. So my question to you is, do you believe that you found Dr. King's Primal Trust system at the right time or at the wrong time? Was it really— would it have made a difference if you had done it earlier? And do you think it, you know, it would have been a shortcut? Or do you think it really was something you had to do at the rehabilitation phase because your brain needed to rewire and it now needed to be the brain that was going to support a person who was healing as opposed to a person who was chronically ill?

Hmm. So in terms of finances, obviously it would have been nicer to have found her earlier. But I think actually, when I think about it, if I'd have found that initially, I probably would never have believed that brain retraining could have healed me because I believed it had to be a physical problem that needed a physical remedy, which is why I got over my needle phobia and I did the ozone and the stem cells. I think if someone had come to me initially and gone, this is going to heal you, and it's a program of someone telling you how to regulate your nervous system and believe yourself well, I probably would have gone, well, that can't work, surely. So yeah, I guess it did come in the right time, really. Yeah.

I mean, the other thing that we've heard, Kirsty, from, from folks who we've interviewed is when we've tried to introduce these neural retraining programs, and again, we, we love, we love, uh, Primal Trust. We love, uh, Dr. King. She's awesome. Been a, you know, past podcast, um, you know, for us. is that we try to introduce the folks who are in the throes of the illness. They're like, I can't do something else. I'm exhausted. Please don't put something else on me. Let me get through my treatment. And when I get through my treatment, then that's something else that maybe I'll have the time for. So, it's another one of the reasons why I'm challenging your thoughts on this and asking you to react to it, because I really think that we certainly have to do things to calm down brain. We certainly have to do things to make sure we're modulating the brain activity, and we have to do things to get out of fight or flight so that we— so our immune system can function, because we know when we're in fight or flight, our immune system is suppressed. But at the same time, the question is, we're piling on another therapy. A, is it the right time? And B, is it really going to be effective when it would be more effective the way you did it, where you retrained your brain after you had gone through the the killing phase or the assist phase of your treatment.

That's a very valid point. I think there's actually some doctors that will prescribe Primal Trust before they'll even treat some of the patients now, isn't there? Because they want your mindset to be, you know, not having that danger cell response. So yeah, the other thing that we have to think about is the terrible brain fog that you get and the overwhelm with Lyme. Like, you really struggle to take on new information, which I think is why now she's doing a part of a program where you can do sort of like daily mini rituals, if you like, um, to build up a resistance so that you can tolerate more. And which I think is great. I couldn't rate it enough. And hypnotherapy with pain management and me daily doing hypnosis for myself and listening to it really, really helped me.

So I want to tie into the next piece, which is, um, Which is one of the biggest challenges that folks have on a Lyme disease journey is they lose their purpose. All right, you, you, you, you know, we are all created, in my view, by God for a particular purpose. We are created to serve other people. And what happens when we become chronically ill is we lose our runner, we lose our purpose, we lose our identity. And I think what's really, really exciting about your story and really interesting about your story is that that was clearly a part of what happened with you. And it wasn't until, you know, your story went viral and you got on the radar of the folks at the pageant that you finally found purpose, right? And your job became a different job. Your purpose became a different job. And your purpose then became participating in this pageant and ultimately becoming this champion and becoming the winner of the pageant so that you can call attention to Lanzi. So you could be one of the great leaders in this community, not only having a cool crown on your head and a cool sash across your chest, but also all the attention that you were getting was bringing international attention to Lanzi. So why don't you talk about how you became a vehicle for Bringing attention to the world based on the very terrible journey you had to go on.

So I actually remember laying in bed and praying to God to please help to heal me. And if he could allow me to be healthy enough to be the mother that I wanted to be, in turn, I would always raise awareness for Lyme disease and help as many people as I could. And that was one of the turning points for me, I think. And I, when I used to lay in pain, I I'd be screaming in pain. Like, the— it'd be like I'd been hit by a truck. It was so bad. And I would pray to God to please help me. And sometimes I would get like numbness in my body, and I'd feel like he'd just taken the edge off a bit. So when I went to the pageant and I had Lyme disease and I stood on that stage and I won, I became the first ever disabled title holder in 80 years of the pageant. So I really was a trailblazer. And when I stood on that stage Everything that I was looking out to when I won was what I had manifested in my mind with my hypnosis, down to the dress I was standing in, down to some of the songs that played on the night, down to the audience, um, how it was said that I won. Everything was like how I'd manifested it. So it was so overwhelming. So I stood on the stage and I cried, and everyone was screaming and cheering because they knew my journey. And I stood on the stage and I said, I promise that I'm going to raise as much awareness for Lyme disease as I possibly can this year. And in my year, I have spoken at the ILADS conference, I've met the most amazing doctors, I've flown to New York, and we did the tick trauma trip, me and Hannah Green. And we went to go and look at Plum Island where, you know, conspiracy theorists are— that's where it's originated from. We went to Lyme, Connecticut. We stood in the park where there was potentially ticks all around us, covered in tick sprays, just trying to raise awareness for Lyme to get and where it originated. Um, we came to the Lyme Gala, you know, so many different things. I— we wore green every single day for the month of May, Hannah and I, just to raise awareness. And people come up to us like, why are you in green? Is that your uniform? It would make us be able to talk about Lyme disease. Um, and me and my friend who own a company called Neo Walk, which is a walking stick company, we've actually just this month launched the Lyme disease stick. It's called Limelight. It literally lights up like a lightsaber. It's so bright. And we've created this strap which says Lyme Warrior on there, Lyme Warrior, to raise awareness for the community so that they can feel seen, that, you know, they're not being forgotten. Because I wanted to be a voice for the voiceless, and I wanted to be a beacon of hope for other people that your diagnosis doesn't determine your destiny. and you can still chase your dreams and achieve them. And I wanted to raise awareness for my daughter and congenital Lyme. And so yeah, I'm going to continue to do that until the day I die. But it was more important— it wasn't about a crown for me and a sash, it was about a community of women that were going to help me to do that. And they have. They're all wearing on their sash, all the finalists this year, a bright green ribbon for Lyme disease, and they all have selfies in it and they send them to me and they tell me how proud they are. And I've created this Lyme awareness badge here with my picture on. That's me standing on the stage, um, when I won. And they all call me the Lyme Queen because everywhere I go and I wear a dress that's green, they know it's going to be green. Um, and I created this children's book which you can get on Amazon, which is Bedbound to Beauty Queen, which is about a little girl in a wheelchair who's told by her doctors that she won't be able to walk again, and she makes it happen and wins the So any way I can raise awareness for Lyme, I will do that. And I've got a website, Bedbound Beauty Queen. I've helped 99 people since I had my title, talk to them about their root illnesses and put them in contact with the right doctors to be able to get the right testing. And some of these people have been told they had MS, ALS, go and say goodbye to your children, you know, sort things out because you won't be surviving. I put them in contact with the correct people and they're getting well now. You know, I can talk to people about mold. I'm not, I'm not a Lyme specialist doctor, but through my life lived experience, I will never not answer a phone call to someone or a text message to help someone because I needed someone to do that for me. And I didn't really have anyone apart from that one lady who by chance in a waiting room asked me, do you have Lyme? And I want to be that person for other people that are struggling.

So as we wind down this podcast, and this is really a beautiful beautiful end to the podcast where you've become this international figure where you're raising awareness all around the world, not just in the UK but here also in the US, which is how we met you. And you were, you know, you were awesome to, uh, you know, to participate in all the things you're doing here. So, um, talk to us, talk to us a little bit about, um, about how this has been spiritually How has this experience you've had, um, now allowed you to settle in on why you went through this journey and why you had to go through all the pain that you went through in order to be able to become the person you are today and doing the great work that you're doing?

So when I was in the bed, I realized that my story— although I'd had my identity stripped by losing my business, which was obviously very upsetting because of my hands and I couldn't hold the scalpel. My story had always been, oh, we're a sick family. My mum's sick, my nan's sick, everyone's sick. You know, we're a sickly family. And that's the story I'd been telling other people and myself for years. So it's no wonder I got sick because I was manifesting it without realizing it. So I knew I had to change the story if I wanted a different outcome. So I had to be someone who wasn't sick anymore and someone who was going to help other people that are sick. And that's why I did the hypnosis, and that's why I imagined myself on the stage, and that's why I imagined myself reading books to children who were poorly and giving them some hope. Yeah. And when I look back at my life now, I'm such a different person. I don't drink alcohol. I don't eat junk food. You know, I really look after my body, which I didn't do before. I treat it like a temple. So it has made me a better person. And my friend used to always say, because he used to come back from Bali, and at one point we thought I really was going to die, I was so ill. And even the doctor said, we don't know what's going on with her heart at this point, like anything could happen. And my poor 10-year-old daughter had heard that and she thought I was going to die. He flew back from Bali and he just grabbed me and held me, and he was like, we've got to change the story, we've got to change this story. And he bought me a sash because he knew I wanted to do the the pageant, and it said Miss Bedbound on it. And he got like a little, um, little headband, and he was like, you're not going to be Miss Bedbound forever, but whilst you're here for now, this is what you're gonna wear. So I have like a picture of me in this little Miss Bedbound sash. And we got a little notepad out and we were like, planned my year ahead and, and how I was going to do this. And yeah, I just dreamt the reality into my new reality, and I became someone else. I don't want to resonate with illness anymore. I don't want to say I have Lyme disease, um, but I would always be here for the community. But the girls in the pageant, they call me the Lyme Queen, as if like I'm the warrior that overcome Lyme, rather than this is a girl who's a queen who's riddled with Lyme. You know, you have to change the story in your mind.

Yeah.

Like Caitlin O'Toole, I listen to a lot of her podcasts, um, and how she also had Lyme. She was originally told she had lupus, um, and she did the same thing. And there really is some truth in it. You've got to change your personality to change your reality.

Well, thank you for all this wisdom, and thank you for sharing your really beautiful story, and thank you for doing all the great work you're doing all around the world. Uh, so can you share with us how folks can get in touch with you, um, either, either through your website or through, uh, social media? What, what are the ways of, uh, of—

what are the different ways folks can contact So I'm on Instagram and it's Kirstie with an IE underscore Miss Great Britain. Or I've got a website which I'm— is about to go live tomorrow actually, and it's, uh, thequeenofconsciousness.com because that's what I'm calling myself now, Queen of Consciousness, because I just got my diploma last month in hypnotherapy so that I can help more people with pain management and changing their reality and their limiting beliefs. We've always got a limiting belief. And underneath everything, I realized I just— I thought that I deserved to be sick, and I was unlovable, and I was broken, and my family was ill, so I was going to be ill. And you have to change those limiting beliefs, which is why I studied hypnotherapy, and now I help people to do that as well. So you can contact me through The Queen of Consciousness. Um, my book's available on Amazon, and yeah, can reach out to me on social media.