Simon - Canada: Alopecia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: I'm joined by Simon from Canada. He uses LDN for alopecia. Thank you for joining us, Simon.
Simon: Thank you for having me.
Linda Elsegood: So could we find out from you how long ago it was when you first noticed that your hair was falling out, how old you were, and how that impacted your life?
Simon: Yeah, well, I was just turning 40. As I got near my birthday, actually, there were a lot of things going on in my life. It was a very stressful time. Um, it wasn't just turning 40 that, that was causing me to stress, we were moving house, uh, from one house to another. Uh, I was joining our family with my sister in law and, and my, my niece, um, for all kinds of good reasons. And, uh, but it meant moving to a new house and doing rentals and getting ready for that. And it was a really busy time. And, um, and yeah, I just started noticing, I think I, I didn't, didn't shave for a couple of days and I noticed that I had a bunch of bald spots coming in so I started taking some pictures and, uh, you know, about three weeks later I was coming back from my haircut and my daughter said, daddy's do have, uh, eyes in the back of their head. What are you talking about? And she said, well, you got two bald spots in the back of your head. And I said, okay, take me, take a picture for me. And, I had these two little lies spots to the back of my head. And from there in about six weeks, after eight weeks, I had to shave my head because I had so much hair falling out.
It was really distressing. It was, you know because you feel like you know what's going on? None of the health practitioners has any answers. I went to see my doctor said, Oh, you know, I've seen this before. It's not too bad. Um, this was before I actually shaved my head and, you know, don't worry, it'll come back.
It comes and goes, this kind of thing. And so it just proceeded to fall out, fall out, fall out, and it went throughout my whole body. I mean, I kept my eyebrows, and I lost this for a little while, I lost all my chest hair, all my body hair, and it only stopped at my knees when, uh, when I finally got to see a naturopath and changed my diet.
Yeah. It was devastating, and I was really at a loss at trying to figure out what was going on.
Linda Elsegood: Literally feel naked, I should think.
Simon: And, you know, you identify so much with what you look like, and you know, it's natural for men to lose hair at some point. I actually have been pretty proud of my family, the dark-haired people in my family I had kept my hair the longest, and then suddenly it was all gone. And you really feel like you lose who you are really.
Like some people say they feel naked or they feel like they lost their identity. And I totally relate to that comment. That's you just, you look at pictures of people with alopecia, and you go, everybody looks the same. We're different versions of Mr Clean, and yeah, it's terrible.
Linda Elsegood: So, what did the naturopath suggest?
Simon: Well, natural path, did a blood test to see what kind of allergies I had to food and designed a diet that was, I, you know, it's kinda like an AIP autoimmune protocol diet. Uh, kind of like a Paleo diet, but custom for, for what I was allergic to. So we took away all the things that I was allergic to.
And then all of the things that cause major inflammation. So no gluten, no dairy, no alcohol, no nothing with any yeast in it. So all anything that could cause a yeast, all the fermented stuff was out. Legumes were out. Corn was out. Um, you know, it was very restrictive and, and essentially it was easier to describe what I was able to eat, which was good quality, lean protein.
And good, vegetables, um, broccoli, cauliflower, the kales and all the stuff. Actually, that's in the betrayal series now. Uh, that was the stuff that I was, uh, asked to eat and, um, and then a lot of, good quality supplements. Um, and then I guess for that she gave me a rice protein powder that I would make shakes with every morning.
That was basically my breakfast. Um, so the Berry Berry shake was with rice protein and some coconut shredded coconut and some good Omega three oil, um, a little Stevia to make it taste okay. And, uh, that's, yeah, just started eating that. And that's about when the hair loss stopped. At least for my body hair, and it's, it stopped at my knees and I, for the longest time I had no hair except for between my knees and my ankles.
Linda Elsegood: So, how did that diet make you feel? I mean, did that give you more energy? Did you feel better inside?
Simon: I felt better inside. I felt better, very quickly. I started dropping a lot of weight. I wasn't a super overweight person. I'm about six feet tall, and I was about 215 pounds at the time. And, um, I dropped down to 185 pounds within the year anyway.
If I remember correctly, it was about nine months, six to nine months or something. I dropped down to that weight. And felt amazing, super stamina, brain fog, gone. Um, just felt great. Every time I ate, I felt great and I never felt bloated. Uh, you know, lots of bowel movements and just felt, I just didn't understand actually how good it felt to eat properly.
I'd just been used to feeling bloated and gassy and just lethargic after eating, you know, a good: spaghetti meal or something like that. And I felt really good physically, mentally. It was very challenging, um, always being different than everybody else at the table. You know, even though my family, my wife, my sister in law did a really great job of making sure that when they made food, it was kind of, it could be made, you know, my way or their way for the kids and everything.
But it was still very difficult. I felt isolated a lot, and it was a lot of work because there were times when, of course, they couldn't help me and they were out or something like that. And I'd have to make food, and you have to keep thinking like every meal, okay, what am I going to be home next to make food and, oh, I need to prepare for meals.
You know, cause I'm going to be out overnight somewhere or something. And every work function and any social situation, you know, you couldn't, I couldn't have anything. The Naturopath was very strict with me at first and said, you can't cheat ever. And that was hard and very difficult mentally.
Linda Elsegood: I've done it too. So, I do know you have to check the labels, things that you think that couldn't possibly be gluten in the reason but it becomes easier over time, doesn't it? Because you know the foods you can and can't eat,
Simon: Yes, I guess I check labels and everything, I think my eyes have been opened even more recently to where gluten is hidden. And, uh, you know if I had known what I know now at the start, I think I would have despaired even more. It's just so hard to get what you really need.
I started to see some results, some funny Brown patches started appearing on my head, and I got armpit hair back, and body hair started to come back. Actually, more body hair came back then, then head hair during that process. But it was hard you know, eventually, we got to about nine months in or so on a diet, and we were celebrating our 15 year anniversary with my wife, and I went to Hawaii, just the two of us, which was, you know, the first time we'd done anything like that, and it was wonderful.
And while I was there, I just let down my guard and decided to eat. You know, just be kind of good what was there in restaurants and I felt terrible, initially and realized, you know, I was married to this diet, and I couldn't cheat, I gained weight.
I felt terrible. I started seeing some hair loss. I went back on a diet. Um. And then went on about another six months and then we made a family trip to Disneyland. And the same sort of process happened. It was impossible to eat properly there. And, came back from there and gained weight, felt terrible, and then my eyebrows and eyelashes all fell out.
So that was terrible, you know, I just realized is there anything else that I can do to help me out? Because I just feel like I'm doing everything humanly possible to make this work. And it's still not. It's still not giving me, you know, full results. What else out there is there? And that's when I heard about LDN from a good friend who is a very naturally focused person, but said, you know, Hey, I've heard about this LDN and it might help you cause it's helping other people with autoimmune issues.
And then my, when I went to see the naturopath, I basically said, you know, I'm frustrated. I'm tired of trying to fight this battle with just the diet alone. Is there anything else we can do? And she said you know what? I was going to tell you the same thing, you're working so hard, and need some more help.
And so I was going to bring up, uh, see if you were willing to take LDN. And that's when I started. That was about two years into the disease cycle. So I started losing my hair in 2013 June of 2013, and I started taking all the end in about June of 2015
Linda Elsegood: and what did you notice when you first started? Did you have any introductory side effects?
Simon: I'd read and learned that you might get vivid dreams. So I was actually kind of excited about that. I thought, well, that might be interesting. I've never been one for taking a lot of drugs or anything. So we started slow. We started with a. I think a 1.5 mg dose and then went for about two weeks, went to three, and then about two weeks went to four and a half. Um, I did get some vivid dreams. Um, and I think, uh, it's just, you know, your, maybe your body's reaction to when those endorphins kick in or something that, uh, things go crazy, but it wasn't too bad.
But the first side effect that I noticed that I didn't expect was about two weeks into the 4.5-milligram dose. I noticed I didn't have any anxiety and you know I'm senior-level management position at work. I am a senior person, in my church community do I do a lot of public speaking.
I do a lot of preparations of Bible studies and things like that. And at the time when I started taking LDN, I was getting ready for a, uh, I was going to be doing some teaching at a Bible school for teenagers. And I was really working hard, trying to get classes prepared. And normally that process, uh, creates a lot of anxiety I really get worried about, not having enough time and not making enough progress.
I ended up talking to my wife and she calms me down and says, you know, just keep moving, keep moving. And all of a sudden, I noticed. I wasn't doing that I was just working. I was worried about all this stress, and I was like, wow, I don't care if I never have my hair ever come back the rest of my life because this is a wonderful feeling.
Just not feeling anxious. And I didn't realize how, how it affected me. So that was the first, uh, the first surprise. Um, then I started noticing my nails, uh, improving. As, you know, many will know that LP should also affect your nails and they get pitted and streaked with white, and they get brittle.
And especially my toenails, you know, they looked almost like you had a fungus on your, on your toenail. And, uh, I started noticing that there was this Ridge. And unfortunately, I never ever took a picture of it, but. There was this defined line where, you know, close to the nail bed and the cuticle, it was totally clear and above the nail bed, you know, towards the end of the nail. Um, you know, across the line it was, it was all streaked and pitted, and everything was like overnight, something changed in that area where the nail was growing, and it was getting clear, and I was like, wow, this is amazing. If this can help my nails and my head, I know nails and hair related, then I'm hopeful that my hair will come back to, so then it was about, probably about three months later.
Yeah, September-ish timeframe that I took my next sort of set of pictures of my head because I was still depressed of what my head looked like, and I noticed that the hair that was coming in now before it had come in and these weird patches, it. My kids and I used to laugh because at one point, you know, like, what shape do you see in daddy's head?
With the hair that's growing back, you know, it's like looking at the clouds and seeing things. So we played games with that, but the hair that started on the LDN. It was coming in kind of all over. It was still thin. And, um, but it was coming in all over my head, and I was like, wow, this is really starting to really work.
At this point, I was still doing my diet, and keeping up with the LDN and just sort of kept progressing, uh, you know, slowly, not overnight for sure, but just slowly, slowly, slowly getting more hair, getting more hair. Um, yeah. So that was really exciting.
Linda Elsegood: And when it came back, was it the same texture as before or was it fine or was it the same colour or had it changed colour?
Simon: I would say it's not the same texture. You know,I finally got to the point where I'm growing it I'm 18 months in, and it was just September of this year, October of this year that I said, I'm just going to let it grow out and see what it looks like.
So it's grey but I was going grey before I lost my hair, but it's greyer for sure. Um, and it, it's a little coarser, I would say at this point than it was when I lost it. Yeah. And I'm just sort of interested to see, you know, how it continues to grow in and if it reverts back or not.
It was browner, it was a Brown sort of colour, and now I would say it's more black and more grey, um, as it comes in. And definitely coarser.
Linda Elsegood: What about your eyebrows and eyelashes? Have they grown back?
Simon: I've, I've got a few eyebrows definitely coming in there and my eyelashes
I've got a few that are starting to grow, and I'm interested to see what sort of comes with that. Um, I've got definitely a little bit more facial hair. I was a person that used to wear a sort of big long sideburns. You know, that's the other thing. I guess I used to shave maybe, you know, before the alopecia, I would shave every day or every other day.
I didn't have a heavy beard, but, then when I had alopecia, I mean, I might shave once every year. It'd be smooth-skinned and no problem. Then just maybe see one weird hair growing out there that just have randomly successfully grown and now I'm back to shaving maybe every three days.
Cause if I don't, I do have enough hair that it's noticeable. Um, so that's coming in more and more too. I see more on the sideburns and more in my or my beard area.
Linda Elsegood: And what about the colour of your eyelashes? Eyebrows and you say beard, is that a different colour as well? And
Simon: texture? Um, so far I would say it's pretty normal.
I mean, normally that hair is more coarse. Right? So I'd say it looks fairly normal actually.
Linda Elsegood: that's really interesting. And how has that made you feel self-esteem wise?
Simon: Oh, it's, well, it felt great. I mean, I just, um, those guys in the office now that, you know, those guys are normal male pattern baldness that, you know, of course before I had more hair than them.
And then during psoriasis, I had maybe the same haircut as them, and they said, welcome to the club, and they were happy, and now they're jealous again. Uh, so yeah, it's made me feel good. Um, just, you know, I just look like maybe a normal guy who's, maybe receding hairline type guy, and I think as a youth, I probably would've sworn I'd never looked like this. I would've if I was going to lose my hair and shave it all off. But now that it's growing back, you know, I'm, I'm happier to have it. I feel better. And now on the bad side, I've had so much success that it's mentally sort of tricked me into going off my diet.
And I've been off my diet for about seven months. You know, it's hard to say because I definitely am still having progress with hair growth, but I think I'd have more and be doing better if I was back on my diet and having the LDN there as a support.
Um, so I'm sort of steeling myself to moving back towards having my diet. I mean, the other thing was this is the second major autoimmune disease that I've had. I had rheumatoid juvenile arthritis as a child from age nine to 14, I went into remission when I went through puberty.
You know, as part of this journey that I'm on, learning lots from the community around, LDN and naturopaths and stuff like that. I just realized that I can't eat like a normal, person. I've got to take care of myself a lot more because I've had rheumatoid arthritis.
I've had alopecia. I developed massive hayfever allergies when I was 18. They just came out of nowhere. There are probably other things that have come and gone that I haven't noticed, but, I'm one of those people that are super susceptible and I don't want lupus or MS or any of these other really devastating conditions or rheumatoid arthritis again, that was awful. Alopecia is bad, but it's not like those other ones. I also had low thyroid with this condition. And that's the other thing that's changed a lot is maybe even before the hair started growing back in, about the same time as, as I noticed my anxiety going away and my nails changing as I was getting my thyroid tested, um, I started getting, I started noticing that I started out at about 120 milligrams of desiccated thyroid at the start of my journey, and now I'm down to 30 and all along the way. Uh, I keep sort of going above range and feeling kind of jittery, and they said let's take another dosage off.
That's really awesome. It's my thyroid healing. And so that connected with all of this too. So I'm feeling really encouraged that I don't think they could have done it on a diet alone maybe there's too many toxins and things in food that I just can't control, I know I'm not sleeping enough I have a stressful job. So there are some things that you just can't, get out of your life without making, you know, full change. Like quit your job, move to desert Island somewhere and be stress-free. That wasn't going to work for me, I needed some help.
LDN, I am 100% convinced it'd helped me. Um, and I'm really thankful for the people that sort of brought it to my attention. And now the community I'm connected with. It's helped me understand, you know, what other things I might be able to do to make more progress.
Linda Elsegood: Well, I think it's very interesting. For other people with alopecia that you has is not going to come back overnight. You've got to give it time. If the was somebody in your position who's just been newly diagnosed, or they've just found out their hair is falling out, what would you say to them about trying LDN?
Simon: I would, wouldn't hesitate for a minute. And I'm kind of a promoter of it to almost anybody who I come in contact with. I'm trying to say It's showing that it's helped cancer and other people too. But for anybody with alopecia I know there's not a lot of evidence out there yet.
I mean, when I first started I’d say it's helping people with ms. It's helping people with fibromyalgia, and maybe it'll help me too. But definitely, I believe it will help you. It's, it's going to help your body heal itself, and that's the root cause, right? As you've got either leaky gut or whatever going on in you right? Maybe having a problem and it's going to help accelerate your healing process. And I'm proof that even going back to just regular eating, it's still helping me.
That's how powerful I think it is. Uh, and then there are the benefits for me of not having anxiety. So between those things, I have no hesitation at all it's been really, really helpful.
Linda Elsegood: Any questions or comments you may have, please Contact Us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.
