Transcription
This is me a few months ago in a hospital bed, 5 and a half thousand miles away from my family. I've actually been ill for 15 years, and nobody could tell me why. But why am I even telling you this? Well, to be clear, I'm not making this video for any kind of sympathy or attention. I'm actually very uncomfortable making it. But a lot of you watch our videos, and somewhere out there, I think there'll be a few of you who feel exactly how I felt, and maybe this might help you.
This is definitely the most open that I've ever been on camera. Not even my close family and friends know how hard the last 15 years actually were. So, let me explain exactly what was wrong with me and when it all first started.
Since about 2010, it's like I was living my life with a massively dragging handbrake. I'd spend five, six, seven days a month in bed. Not tired, but absolutely flattened, wiped out. Even getting upstairs was a massive effort. And even when I wasn't wiped out in the day, I was in bed by 7:30 most nights with just nothing left. Now, I'm driven. I can grind. So, I got good at hiding it from most people. I could push through a few days of filming with extra caffeine. But the one person I couldn't hide it from was my wife. She would see everything.
"At his worst, he was in bed three or four days in a row. He was so sick. He was so tired. You could see in his face. You could see in the way he was moving. I could tell like he was physically ill."
And the exhaustion wasn't the worst part of it. My brain couldn't hold on to anything. I would forget what I was saying halfway through a sentence. My memory was an absolute disaster. I'd jump from one thing to the next, wired. My nervous system was permanently in fight or flight, and I would constantly be in a really low mood. It was just low energy in every sense. There was something complex going on. And the hardest part was how it was impacting my life at home. I wasn't able to play with my kid. I wasn't even able to sit there and have a proper conversation with my wife at dinner. I wasn't being the dad or the husband that I wanted to be.
I remember when we were living in Barcelona, that was the first time I realized it was serious. It's not that he was just tired. He could not think. His mood changed a lot. Um, he wasn't present as much as he normally uh was with me, and yet that was the first time I realized like, this is, this is something else.
It wasn't just family stuff either. I love working. I love creating things. And this thing meant that I wasn't able to work anything like I wanted to. Honestly, it felt like I was wasting a big chunk of my life.
At the start, I assumed there would just be an answer, a test, a doctor who could tell me what was wrong. I was told I was stressed. I was told I was depressed. I was told I had ME, chronic fatigue syndrome. But what I found frustrating was that there didn't seem to be a clear answer. There was no obvious cause, no simple test, no clear road map to getting better. And that was something that I didn't want to accept. So I ended up doing a load of my own research. I spent a ton of money. And honestly, I didn't make that much progress. I went to specialist after specialist after specialist for over 10 years. And they did find problems. I had parasites. I had digestive issues. I had low testosterone. I had a big list of problems. And so you work through them. I'd fix one. I'd feel a bit better, but then a few months later, I'd be back in bed.
"Another treatment didn't work. That was really like sad to see him like just again frustrated and and confused."
"It was really tough because I'd get my hopes up and then crash again. That was really painful."
"Scott was basically trying every year one treatment to another treatment. And I knew eventually he will have a clue of what was happening. But the difficult part was seeing every year like seeing him after the treatments when he didn't find, you know, feeling well, um, just that moment when when I see him like hopeless, that was really, really hard."
Every now and then, I'd start to think, is this just how I feel now? Is this it? But underneath, I truly believed that at some point, I would find the real problem.
The turning point came at the end of last year. My wife was seven months pregnant with our second child. And honestly, I was dreading it. I couldn't see how I could face a newborn again. Before Romy arrived, I remember one time we went into bed, and Scott just fell apart. And I really, at that moment, I knew what was going on in this year. But that moment, I could see his pain like so clear, like he was just on the limit.
Genuinely, a few days later, I watched a video that completely changed my life and how I was thinking about this problem. It was Chris Williamson talking about his own health journey, and it felt very similar to mine. A complicated illness that no one could figure out. I actually cried watching that video because the way he described everything was so close to what I'd experienced. For years, I'd mostly been focused on fixing my gut because I thought that was the main problem. But Chris had looked at his whole body, and he looked all over the world for answers.
So that weekend, I sat down and I did some research. I was looking for somewhere that would look at all of me at once, somewhere doing cutting-edge work. And I was looking anywhere in the world, and I found a place in Mexico, of all places. Now, I know that sounds crazy. I'd never considered going abroad for treatment, but at this point, I felt like I had nothing to lose. The hospital I found offered a week-long program which included hundreds of tests and a load of specialists examining every system in your body, all trying to answer the question of what's actually wrong with me. It was an incredibly hard decision to make. When I left, our baby was just three weeks old, but the alternative felt much worse. So, off I went to Mexico, hopeful that maybe finally the doctors there would find something everyone else had missed.
The first few days were just full of hundreds of tests, blood tests, scans, physical tests, everything. They're just trying to pull as much data as they can. And after those initial tests, on day four, the whole medical team met to review my case.
"But in your case specifically, what called my attention the most is the persistence of the the symptomatology. You know, you you came from multiple treatments. You was doing the things properly. Your relapses came back, came back, and you're you you showed to me a kind of deterioration in your health."
Dr. Uoa was my lead doctor at the hospital, and after their meeting, I sat down with him hoping they'd found something. But they needed me to take even more tests. So I did those tests and I waited. And when those results came back, I finally had my answer. I had Lyme disease.
And when he told me, relief washed over me. Finally, I had something with a name, something I could try and fix. But as soon as I walked out of his office, I, I just fell apart. I started crying in the hallway. It was a lot to take. I just realized, like, it was a dis- a disease. It's a disease. Even now, in my brain, I'm not thinking of it as a disease, you know, like a thing. I struggle to comprehend it because it's not, it's out of my control. It's like it's just luck. Just, just luck. And like there's nothing that you, you know, there's nothing that you can do. It's really hard for me to accept.
Lyme disease is the most common tick-borne illness. Cases of Lyme disease appear to be on the rise. Cases of Lyme disease are rising in Canada. Nearly half a million Americans are diagnosed with Lyme disease each year. Lyme disease is an infectious disease transmitted by a tick bite. And, uh, Lyme disease is, is a condition which is produced by a bacteria called Borrelia burgdorferi.
I'd actually looked into Lyme disease before, but because I didn't have one of the most important symptoms, that bullseye rash, I didn't think I could have it. It's very unfrequent to find people that can develop the erythema migrans after receiving Borrelia burgdorferi. So many people that has had tick bites ignores that they have the bacteria within. The immune system is kind of in an alert mode because it detects pathogens in the body, but it can't find.
In plain English, the Lyme bacteria can change shape and protect themselves inside a protective layer of slime. That means that your immune system knows something's wrong and is on high alert, but it can't find it to kill it. It meant that my body was working flat out to fight something it could never actually catch, which is exactly how it felt.
But it wasn't just Lyme disease. They'd also found Babesia, a parasite similar to malaria that attacks red blood cells, and Bartonella, which affects the nervous system. And on top of that, Rickettsia, which is another infection causing inflammation. So, it wasn't just one thing. It was four different infections, probably all from a tick, hitting four different systems in my body. So now, for the first time, I finally had answers.
But finding out what was wrong was only part of the battle. Now came the treatment, and it was very intense. So the treatment for the Lyme disease was a further two-week program. It was more time away from my family. And it's built around two rounds of something called whole-body hyperthermia. They basically heat your body up to a core temperature of 42 degrees Celsius over four hours, and the rest of the two weeks is spent preparing your body beforehand and then detoxing it afterwards.
"We have developed along with a with a clinic in in Germany a protocol well of extended hyperthermia. That's the way we call this this protocol. We put people into a special chamber that it's called Heckel to produce an artificial fever. A fever that we will control the hyperthermia per se. It's very powerful treatment to to kill Borrelia burgdorferi, doesn't matter where they are, with a fever, prolonged fever state, cystic form of Borrelia and biofilm is wiped out practically."
And because I was going to have so many IVs, I ended up having about 30 or 40 hours worth over those two weeks. The first thing they did was put a port into my chest. It's a little pipe that goes down just above your heart. The first treatment was taking some IVs that are designed to kill the Lyme in the brain and Babesia. And as soon as this started, I felt absolutely terrible.
"Hey, love. Um, I'm not feeling very well. That's why I haven't called. So, yeah, sorry. Yeah, I can't, don't feel good enough to call. Can you send me some pictures, please?"
I also did something called ozone therapy, where they pull the blood out of you, mix it with ozone that stresses the pathogens in the blood, and then they put it back into you. And I sat in a hyperbaric oxygen chamber, breathing pure oxygen under pressure so that my body could soak it all up, plus a whole cocktail of different IVs. I was doing 10 to 12 hours of treatment a day.
So once I'd done the prep, it was time for the hyperthermia. First thing you have to do is wear a nappy. It's been a while since I've done that. Then you climb into this chamber, and the nurse puts a load of sensors on you, including a special internal one for your core temperature. Then they turn on the lamps and start heating you up. They tell you to stay awake until it begins to feel uncomfortable. So, I was lying there, and I could see the monitor that I was plugged into. And I found it interesting that for the 45 minutes that I was awake, my internal temperature only went from 36.6 to 36.9, just .3 of an increase, and it was definitely the hottest that I've ever been. Then, once I couldn't take it anymore, I asked them to put me under.
So fast forward four hours, and you come around, you wake up obviously very hot with cool towels all over you.
"How hot did my body get?"
"I'm sorry."
"How hot did my body get to?"
"42.0."
"When he had the first treatment, the hyperthermia one, um, I was so, so scared, like I was so feeling so nervous. I was just waiting for that call. And when he called me, it was actually really funny because he was really relaxed. The only thing he could thought about is it was food. He was from the first second telling me how delicious were the grapes. And I cannot believe how much, like I cannot believe how the grapes taste."
The treatment had gone well. I'd reached the target temperature, and I was actually feeling good.
"Man, I feel really good to be honest with you. Uh, it's probably the best that I felt since I've been here."
But then, in the following days, as the bacteria was dying off and my body was trying to process it, I felt absolutely awful. And my sense of smell was incredibly sensitive. I could smell absolutely everything. I couldn't go near the restaurant in the hospital, and I didn't eat properly for four or five days. Apparently, when the bacteria die off in the parts of your brain that handle your senses, the senses overshoot for a while.
But somewhere in the middle of all of that, and I don't remember exactly when, something else changed.
"I feel different. My nervous system is different. The thing was affecting my nervous system. I feel like a different person. My nervous system had been permanently stuck on, constantly in fight or flight. And for the first time, I could actually feel it switching off. Even my breathing felt dramatically different. It was a really weird experience."
But the real question was, did it work, and will it last? So, I came home unbelievably happy to see my family again. And now it's been almost three months. And yes, I do now feel very different.
"I straight away I noticed after the first day probably that he was so different, like so calm. I think I forgot during the years like how calm he could be. Like this is when I remember I told him eventually, like this made me remember when we met, like in the mood that he was and how calm he was. Um, also how present he was, and now he was able to speak with me, to have the energy to to play with Romy, me, uh, to have the energy to to do something in the house."
The change is complex, and it's hard to put into words. But in general, I feel like I've got more energy. My focus is coming back. My speech is better. My energy is building week after week. And the strangest part is that it feels like time is slowing down. I know that sounds weird. So I asked one of the doctors about it, and he explained that as my nervous system settles down and I come out of fight or flight, my brain is stopping racing ahead. It's not constantly jumping from one thing to the next. So my days will feel more sequential. They actually feel longer.
But to be clear, there's still that voice in the back of my head, the one that's scared that this actually isn't the thing, that I'm not fixed. And to be honest, I think that's normal. There's been a few times in my life where I thought I'd found the answer, and ultimately, I hadn't. It's going to be another five or six months before I know for sure. And to be completely honest, in the last few weeks, I felt pretty terrible as I've been on medication to help repair the gut problem that I still had. But I'm off those tablets now, and all of that was just temporary. I'm confident that I'm going to get to how I want to be.
Now, obviously, I'm not a doctor, and I'm definitely not saying I have any of the answers. But what this experience has taught me is not to stop asking questions when something doesn't feel right. Don't give up on looking. Keep asking questions. Keep trying to understand what's going on. And look, I know that I'm lucky. I was able to travel. I was able to spend the money to chase this down in a way that not everybody can. And I don't take that for granted. But the only reason that I'm sitting here today feeling better is that a few months ago, I watched someone share their story, and it pointed me towards my answer. So if telling my story unlocks something in a few of you, then it was completely worth making this video. And for me, I'm genuinely hopeful now, and I'm really excited about what's coming.