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We’re speaking with Louise from England. She takes LDN for psoriasis. Thank you for joining me, Louise.
Louise: Thank you.
Linda Elsegood: Could you tell us when you first noticed there was something wrong with your skin?
Louise: It was approximately 20 years ago, just after my dad died. I had it on my elbows, and the doctor diagnosed it as psoriasis. It's in my family, but it didn't really bother me too much at the time because it stayed on my elbows for a good few years before it started to spread. And I tried all the different creams that the doctor gave us, but it didn't work. So I just sort of ignored it for a while until it started to spread.
Linda Elsegood: So how long do you think you had it before it started to spread?
Louise: I can't really remember, but possibly as much as between five and ten years. I'm guessing, to be honest. I don't know exactly.
Linda Elsegood: So when it spread, where did it spread?
Louise: Well, it's spread more around my arms, and I've got some patches on my knees and this stayed like that for quite a while before spreading again. And then it spread all up and down my arms and to my lower legs. And it got quite bad. My arms got infected, but I didn't know what was wrong with them at the time. So it was a while before I went to the doctors. And what happens is if psoriasis gets infected, it just spreads like wildfire, and there is not a word to describe the intense itching. It's really awful, and it really makes your life very miserable.
Linda Elsegood: So how far did that spread at that point?
Louise: All up and down my arms.
Linda Elsegood: So it was contained just your arms and your legs?
Louise: At that point in time, it was.
Linda Elsegood: Even at that point, the medications didn't do much. Is that right?
Louise: That's right. I probably thought it knocked it back at a little bit, but they certainly didn't make it go away. It just continued to get worse.
Linda Elsegood: And I suppose the more you worried about it, probably made it worse.
Louise: Probably. Yeah.
Linda Elsegood: So did it go any further than just your arms and legs?
Louise: Well, five years ago I had light treatment on my arms and legs. And it worked really well. I thought, Ooh, it's gone after it. Nobody told us it was going to come back. I thought that was it. So 10 to 12 months later, it started creeping back, and it came back worse than before the light treatment. And it just continued to get worse, really bad. And then my legs got infected, but I knew what it was because I had infected arms. And last July I was badly infected and went to the doctor, and went on the waiting list for light treatment again. I spent from August last year to March this year having all three light treatments. So I had the yellow light first, cause that's the mildest form. After a few weeks, they knew it wasn't going to work, so they put us on to the pink light and then it became obvious after a few weeks that that wasn't going to work. I was desperate because I really thought that it worked five years previously.
And then they put us on the UV light with psoralen, and that started to work. But I was going through a divorce at the time which was not very nice, and it just stopped working halfway through it, and my psoriasis, because it was stress-induced, it really came back very badly.
And I was actually accidentally burned with the light on my body because I had some on my stomach by then. And I ended up actually with more than what I had and it would actually be easier to tell you where I didn't have it. The only places I haven't got it is on my scalp, palms of my hands, and the soles of my feet. It is everywhere else; quite prolific. And you just feel like a complete - I want to say the word, but you just feel like a freak and like, you've got to cover yourself up; I've even got it on my face from my neck right down to my feet, even in the summer, which is really awkward.
And it’s just cruel in that it just makes you feel so isolated. When it was infected really bad, I just looked like I had the bubonic plague. I just couldn't bear in the morning when I go in the bath in the winter, I get up early in the morning, it's still dark, and I don't put the light on because I can't bear to look at myself, which doesn't work in the summer. Cause obviously you get off so bad, I couldn't stand even looking at myself. And when I tell people how bad it was, they say I look all right, and I say that’s because I'm wearing clothes so you can't see it.
And I'm very good at covering up the redness on my face so it isn't obvious to other people when I'm in my day-to-day life, but I know it’s there. It's uncomfortable. It's itchy. It's unsightly. And I just felt like quite frankly, if I could shoot myself in the head, I probably would have done, to be honest before I got onto the LDN.
Linda Elsegood: Wow. Did you have any other symptoms, other than the skin?
Louise: Yeah, I've had uveitis two or three times, which is inflammation of the coloured part of the eye that's linked to it. And I've also had arthritis and muscle soreness, but that was about 12 years ago. And unfortunately, it hasn't fled since, and it just destroyed a joint in my toe, which is neither here nor there. It doesn't affect my life in any way, but it just shows you the damage it can do when it comes back. Both it hasn’t, touch wood, it hasn't come back and the only incidence I’ve had is arthritis.
Linda Elsegood: Wow. The skin - I mean, that sounds horrendous!
Louise: When it started on the face, I couldn't believe it. I was kind of stopped because you can’t cover the rest of your body. I thought I'll attack that with creams, you know, two and three times the strength you’re supposed to, but I couldn't let it spread because once it takes the hold, it doesn't let go.
Well, four months ago I started on LDN because the doctors at the hospital wanted to give us methotrexate and I didn't want to take it because I work and I don't want to lose my immunity in what I'm doing, I'm in the wrong job for that. But also my sister, who has psoriasis, she took it years ago, and she suffered severe nausea and hair loss. So I just didn't want to take it.
So when I heard about LDN, I thought I would like to give that a try, cause it appears to have little or no side effects. So I contacted the doctor in Glasgow, Dr. Andrew McCall. He prescribed it for me. So I've been taking it for just over four months now. And I would say within the last week that I've noticed an improvement, but I have to say it did get worse before it got better. And I'd watched a YouTube video of it - Jenny, I think she was called, and she had said it got worse before it got better. So I wasn't too worried when it got worse, and she talked about how she was getting completely better. So I just kept persevering with it. And within the last week, I've noticed that there is a dramatic improvement.
Linda Elsegood: Wow. That's amazing.
Louise: And that for the first time, in many, many, many years, this last week I've got bare arms outside in the sun. Oh, I'm thrilled that I can actually show part of myself, and just be comfortable in the hot weather and have the sleeveless top on, because I couldn't do that for years. I couldn't possibly do it.
Linda Elsegood: That is such a great story. Isn't it? It really isn't so inspirational for the people to listen to it. Like you listened to Jenny's story. It's very important to share.
Louise: Absolutely, because I think people should definitely try it.
Linda Elsegood: That's amazing.
Louise: Cause I'm so glad that I actually heard about it on an American support site. And it was where you send your emails through with a list of different threads that I've gone on with different conversations. And I just thought, well, I don't even know what naltrexone is, I'll click on it. I think it was prescribed in America for quite a long time. And this man was taking it and said that he tried all the other treatments that are heard of, some of which have horrible side effects, and he'd been taken this and there were no side effects. And so that's why I investigated it, not just taking it off the internet.
Linda Elsegood: I actually like to interview you next year and find out how you are getting on.
Louise: Yeah, that's fine.
Linda Elsegood: Okay, well, thank you very much for sharing your story with us, Louise.
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.