LDN Social Media
Get connected with us on social networks
Linda Elsegood: I'd like to introduce Ray from England who takes LDN for Hailey Hailey's disease. Thank you for joining me, Ray.
Ray: Thank you very much for asking.
Linda Elsegood: could you tell us about your Hailey Hailey's disease when you first started to notice symptoms?
Ray: I first started to notice symptoms on my body about seven years ago.
Linda Elsegood: what kind of symptoms?
Ray: I was getting a breakdown at the skin at that time, which was mainly centred around the neck on the left and the right sides. It was blisters. It was becoming infected, and it was rubbing on shirts obviously when I was working as a teacher.
Linda Elsegood: And what did your doctor say? What medications did they give you to help?
Ray: I was prescribed some cream and then some antibiotics. Basically, what was happening was the outbreaks were lasting for about five to six weeks. And then they were going into slight remission, but the breakdown was starting to come back again.
Over a period of time, the outbreaks were getting worse because it was becoming sorer and it was breaking down with more regularity. In 2009, 2010 I got massive eruptions in my groin area and also on my chest under my arms and my neck was really bad.
Linda Elsegood: Was stress a factor that made it worse?
Ray: Stress is a factor. LDN in the UK is off licence, and although I had remarkable effects with it and remarkable benefits, I was going to see my consultant this week. I was anxious that she was going to turn around and wash your hands of me as other people have.
So I was mindful of that. A couple of days beforehand I started getting spots of it coming up on my stomach. But I don't think that stress, he's everything. I think is a contributing factor but it's not the sole actual reason for it.
Linda Elsegood: Well, if I can take you back to before you started LDN, how did you go about obtaining a prescription in the first place? How did you hear about LDN?
Ray: I heard about LDN from the self-help group that I'm involved with which is, Hailey Hailey's Disease New Approaches. This was started off by a lady called Lori and Thomas. And there are 70 people involved in that now. We're trying to help each other through this.
One or a few there had LDN prescribed, and I saw that they had it. So started researching it because once I found out what Hailey Hailey disease was, the congenital effect of the calcium pump and that he was hereditary, I started looking into it. I did a vast amount of research and came across the work of Dr. Bernard Bihari. That's how I found out about LDN.
Linda Elsegood: And how long ago was that?
Ray: That was about January this year when I started, I was formally diagnosed with it in October last year.
Linda Elsegood: So when she heard about LDN, and you could see that other people were taking it, what did you do about getting a prescription?
Ray: I had spoken to my GP to see if there was any chance that he would prescribe LDN for me, and he said he couldn't because all the directives that have come from the local commissioning group on prescribing off licensed drugs. I then spoke to my consultant about LDN, and she said that she couldn't do it either. So I wrote to the commissioning group in the UK asking them if it was possible. I had been referred by my consultant for laser treatment on this which I wasn't really keen on because that was just going to affect the skin surface.
It is a cosmetic reconstruction. It wouldn't affect the cause but they refused as well because he didn't fit that criterion. So I wrote to the chief officer of Dudley in the commissioning group and I wrote to him five times. I tried to phone him three times. He wouldn't speak to me, so I knew I was getting absolutely nowhere. My consultant had used LDN in the past and she was quite happy with the research that I'd done and was willing to give it a try. She wrote the request for LDN for me through the hospital board but was rejected by the commissioning group. So I knew that this is going to happen and I knew that wasn't going to get anywhere. I got 5 letters ignored. I went to my GP, and I said:" Look, if I get this myself, would you supervise me?"
And he responded to me that if I got it, I was taking it he would have nothing to do with it, so I felt right Okay. So I stopped all antibiotics in February, all opioid painkillers. So on the 28th of February, I had filled my supply of LDN, and I gradually started to build up from 1,5 mg up to 4,5 mg over a period of time.
I've now been on it for just over a month. I've been on it for five weeks.
Linda Elsegood: You are very kind to offer us a before and after situation which people can see at the end of the interview and it is absolutely amazing.
Ray: I mean, I would go so far as to say that has changed my life. One little thing that people will suffer from it because of the pain and the pain is constant. It's 24 hours a day. You can't sleep, and there are some people that I know who have this on her back. They can't sleep on their back. Unfortunately, I don't, but he doesn't matter because in the groin chest and armpits, if you move around in bed, which we all do, then the pain of that wakes you up.
So for the period of time, I was getting on average about two and a half hours sleep at night which was not exactly doing me any good either. I haven't worked since last June because I can't stand in one place very long. I can't sit for very long.
I certainly can't drive because I can't get into driving position. Now what the LDN has done, it's transformed. It's taking the pain. It's healing dramatically. The groin area is slightly improved, not as the neck. But then again, I'm not expecting it to work as fully in other areas but my underarms, my chest is clear. I'm able to basically live a more normalized life. I'm bathing four times a day. I'm still not ready for going back in front of the classroom for the kids. I think it's important to say that the support that I've had from the group from LDN research trust and from a consultant is giving me hope, optimism and determination to get this thing kicked into touch.
Linda Elsegood: What about your sleeping pattern now?
Ray: Sleeping is more or less normalized. I might wake up once in the middle of the night one for 15, 20 minutes and then I get comfy again and go back to sleep.
Linda Elsegood: And that in itself has an impact on everything, doesn't it? just being able to get your rest and have asleep?
Ray: You wake up in the morning and you know you still got it, it's still sore in areas, but you're actually seeing the thing getting better. It motivates you that something is happening. I may be on it for the rest of my life. I may get a taxi in the future but at least I will know then that I have something that works, something that is helping me, and something that's restoring my quality of life.
Linda Elsegood: Well, that's excellent.
I think you might find it's a drug for life, but because it's not toxic and it's not going to do you any harm, there's no reason why you shouldn't take it.
Well, that is amazing. How about if we in six months time do a follow up to see how you're progressing?
Ray: That's great. I mean, anything I can do to provide information that will help anybody else that's what we'll do. One of the things that I've done at the moment is, I have been recording everything on a daily basis religiously. I've been taking blood pressure measurements because I do suffer from, blood pressure, which is managed but nevertheless, I have got slightly high blood pressure, and there's been no change in blood pressure. It is stable on both sides. I've been noticing the dosage the symptoms, the areas, sleep patterns, mood, appetite and documenting everything that I'd been doing every day.
And honestly, I can say that I have had absolutely no side effects of this. The literature states that you are the best advice to take this st 1,5 mg and go up, after about a two week period by one milligram, so 1,5 mg, 2,5 mg, and then 3 mg. I did it a bit quicker than that and in about three weeks. I suffered no adverse effects from it whatsoever. And it may well be that because I've taken 4,5 mg quite quickly I will go down to 3 mg and then see you, and will keep on measuring to see what happens after that.
But there are no side effects that I have come across at all. And that in itself is marvellous. I've also taken steps to engage my MP with this method about it being a full license and he has written to the commissioning group. And if he doesn't get any response, then I'm prepared to take it to the secretary of state for health.
Because I feel that the evidence that I have and the images that I have been living proof that this particular medication is invaluable for anybody who has Hailey Hailey disease.
Linda Elsegood: Well, I'll look forward to speaking to you again in six months time. Right?
Ray: Okay. Thank you very much, indeed.
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.