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I’d like to introduce May, from the Netherlands, who takes LDN for Hailey-Hailey disease. Thank you for joining me. May
May: You're welcome. My pleasure.
Linda Elsegood: Could you tell me about Hailey-Hailey disease to start with? That would be a good point.
May: Yes, I can. Hailey-Hailey disease is a very rare skin disease. Most of the time you inherit it from one of your parents or family members. In my case, I don't know anybody in my mother's or my father's family that has the disease. So I don't know if I inherited it or was just born with it. We’re always born with the disease. It's very rare. It causes blisters into the skin layers, as there is a defection in the calcium pump, which doesn't make the skin layers to layer in a normal way. So actually the skin just collapses in the way. And blisters come from the inside and they come to the outside. And you will get some blisters on your feet and soles. And most of the time the sores will get a secondary infection or bacterial infection. And very often it isn't treated very well by the doctors either, because they don't know much about it. In my case, I was diagnosed with Hailey-Hailey in 2011. I know now that I had it for many years before because my doctor always said it's kind of exceeding eczema or an allergic reaction to something, or she also said it was herpes simplex, but now I know that it was Hailey-Hailey
Linda Elsegood: Did it break out where it gets worse some periods of time than others.
May: For instance, when your immune system is weaker, or you're going to be sick, like the flu or having a cold, my experience is that the break has come then. I think because, at that time, your body isn't strong enough
Linda Elsegood: What about stress?
May: Yes, definitely. I try to avoid stress as much as I can. And I guess other fellow sufferers also experience when they are stressed that it's more common to have a breakout. Aso heat; you have to try not to sweat a lot, so heat can also be a trigger to let the disease come out.
Linda Elsegood: What treatments did the doctors give you?
May: When I got diagnosed in 2011, I got steroid cream from my doctors, and in the beginning, it worked, for just a couple of months; but after that, it didn't work anymore. The first time when I had a major breakout it lasted for about nine and a half months, the breakout, and it was under my breast, also covered most of my stomach and on my back. My doctor didn't actually treat me very well, because in the beginning, she said it was shingles. I just became very ill, and I almost couldn't walk. I couldn't drive my car anymore, and I couldn't sleep. I only slept for two, three hours a night, and I wasn't taking the medication themselves. So just my normal, my normal life was just, I couldn't do anything anymore.
Linda Elsegood: It sounds very uncomfortable and very painful.
May: Very uncomfortable It's very painful because it takes a big part of your life, because you can't function in a normal way anymore. So I went back to my doctor - actually, another doctor was sitting there as she was sick - and when he saw the sores he says this doesn't look very good, because the sores, the crust, they were just greenish or yellow and it was smelling. So he said there is something wrong here and I want to take a culture to see if there was any bacterial infection. And at that time I had a major, major bacterial infection. So I had to be treated with antibiotics and the infection went away, but the sores didn't go away. So he said, I can't treat you anymore, I have to send you to a dermatologist. And they took a biopsy, and that's the only way they can say that this is Hailey-Hailey, the only way is to take a biopsy. And that's when I go to the steroids or the cortisone, and they've worked for a short while, just a few months. And then the breakouts came back again, and with both breakouts, I have a major breakout. I say they lasted for about nine, nine and a half months. And the second breakout at the end, I was like, okay, there is nothing they can do. I just have to live with this disease. I didn't get any happier with this and felt kind of depressed in a way, and you're not able to live the life you want to live. Just the same simple daily things, they're just impossible to do actually. And that's when I came to another dermatologist - they wanted him to do second opinion, and it still showed Hailey-Hailey.
About that time I just typed on Facebook Hailey-Hailey, so I came to a Hailey-Hailey site on Facebook, and that's really changed everything for me. I met fellow sufferers because you don’t know anybody else in your surrounding with the disease. And that's the first time I heard about LDN. I saw the words, the letters LDN, and I asked people what LDN is? And they explained to me what LDN was and their experiences with LDN. When I heard that, I just thought I have to try this, no matter what, I have to try this. And a month later I had an appointment with my dermatologist in the hospital, and I was really also prepared for the battle with him. Cause I thought he wouldn't go along with this. So I mentioned this to him.
He had never heard about it and didn't know what it was. I actually said to him, no matter what, if you do not give it to me, no, I will get it in another way, because Laurie had also told me she could help me get it in another way. So I said to him, I'm going to do it with, or without you.
And after a week or so he called me back, and he said, okay, okay. I would like to try it. And at first, you said, okay, you had to try a 12 and a half milligram. I said, no way, that's not possible because they didn't know of low dose naltrexone. He said to break the tablet, take one piece of the tablet. So I said, you have to listen to me and please, prescribe me a prescription of 1.5 milligrams because I know a pharmacy that's gonna make it for me. So he went along with that and I think 28 or 29th of November, I started LDN for the first time. And within a week, I felt I had more energy. I actually felt so much better than I had been in many months actually. And I also think I overdid things in that first week so off the bat, I felt more fatigued, but I felt much stronger. And just after two, two and a half weeks, I started to see improvement with my skin. The sores, the wounds were drying out, crusts were not green or yellow. And within the middle of the three weeks, it was really starting to heal. My skin was really starting to heal and in January, and let's say about half of January, I was just completely like, my skin was completely clear. Completely clear. Everything was gone. So for me, that was a big miracle.
Linda Elsegood: So how many years was it that you had it really, really badly.
May: The problems started for me in 2011 for that one major breakout. Before that, especially in the summertime, I had some small breakouts, but I didn't know what I was having, but now, of course, I know. I didn't have any big problems before 2011.
Linda Elsegood: So how many months were you on LDN before your skin cleared totally?
May: Almost two months. And then it was totally clear, not one spot.
Linda Elsegood: Unbelievable, amazing.
May: Yes. My doctor used to phone me every two weeks to see how things are going. I said, boy, you’re in for a big surprise when I come to my next appointment because I'm clear. He said, no way, that can't be possible; and I said yes, it is. My next appointment was in February with the dermatologist, and when he saw it he was just silent. He couldn't believe it. He was just so amazed because he said I didn't have any belief in it. Not any belief. He said, I just had to go along with you, as she said she will get it anyway. I couldn't just let you do this on your own, but he said I had never heard about it, never. And he was just amazed.
So they took pictures before I began and when I came back, they took pictures. When I came back the first time I had a small rash left, just some crusts. And then when I came back the second time, I was completely clear. They took pictures again, and they were just amazed by the results.
Linda Elsegood: So is your doctor prescribing LDN now for other patients?
May: I went to see him yesterday and he’s still with a big smile and relief. And he said there was one other patient in the hospital with inherited disease. That patient didn't react to the steroid or cortisone cream. So he had shown my pictures to another doctor, and the doctor treating the other patient now wanted to prescribe LDN to their patient. But the patient wasn’t sure if he wanted to take LDN, but they will try to make him change his mind. So I thought that was amazing because they never heard about LDN and now they are trying to convince another patient to take it. Wonderful.
So I'm going to study about Hailey-Hailey and LDN because Hailey-Hailey disease is one of the few, or maybe the only diseases that are not autoimmune - all the other diseases that people take it for, most of these diseases are autoimmune diseases. So I think it's very interesting also, why does LDN help Hailey-Hailey.
Linda Elsegood: Thank you ever so much for sharing your experience with us. It's been very inspirational, and I'm sure there are people out there with Hailey-Hailey disease who will now think about LDN, and I hope they encounter a prescribing doctor. Thank you. So thank you very much, May.
May: Okay. My pleasure. Thank you.
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