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Linda Elsegood: I'd like to introduce Lori from Northern California in the United States. Thank you for joining me, Lori.
Lori: Oh, thank you for having me, Linda.
Linda Elsegood: Could you tell me when you first started to notice there was something wrong?
Lori: Well, I was kind of on the lookout, if you will, because my father and my grandmother both had Hailey-Hailey disease, but it didn't manifest itself in my skin, I should say, until about 21 but that was over 30 years ago, and that was shortly after the death of my brother in law. That was very traumatic. And then my skin just went crazy sort of thing.
Linda Elsegood: So when you say crazy, I'm guessing, you mean blisters and some weeping?
Lori: Yes, I had it all. I had terrible blisters underneath my arm in the armpit area, under my breasts, in the groin. Not only that, very raw lesions that are kind of like little razor blade cuts, if you will, and I know a lot of my fellow sufferers suffer from the same thing.
The burning can be excruciating. It feels something like a really terrible sunburn or a second-degree burn. Then, of course, it weeps fluid and that fluid is rather sticky. And then you have the problem with it sticking to your clothing, and then you move and your skin tears, and it's just a terrible, terrible disease. We're finding more and more about the difference in symptoms.
Linda Elsegood: So when you were diagnosed with Hailey-Hailey disease, what medication were you offered?
Lori: Well, there were so many it's hard to recall all of them, but of course the typical antibiotics like Keflex, penicillin, tetracycline. On a few occasions, there were steroid injections like Kenalog, and I was even put on Dapsone, which was developed for leprosy. And then there are topicals, and then about ten years ago I learned about silver sulfadiazine, I think it's called, and that actually helped with the burning. But there were so many different antibiotics, as I said, I can't even remember all of them.
Linda Elsegood: Could you ever manage to get your Hailey-Hailey disease under control?
Lori: I could. There would be periods of remission. I would have a few months, and often in my twenties, I would have a year or two; and then in my thirties, it gradually progressed, and I was having fewer remissions. And then up into the forties, it was getting to the point where I would only have a few weeks of remission through the whole year. Sometimes it wouldn't be too bad, maybe under the arms, and that's it.
Then other times it was under the arms, and the breasts, and the groin, and on the back, and on the neck, all at the same time. And that would last for months, and nothing was really touching it. And I used a lot of alternative therapies as well, but I never fully got a handle on it up until I started researching LDN.
Linda Elsegood: So, before you started LDN, what would you say your quality of life was like on a score of one to 10 and 10 being the best?
Lori: Well, the quality of life lessons are hard, because here you are, you almost feel immobile cause it hurts so terribly to move. Move your arm, and you've broken out there, and it cracks, and it bleeds, and it burns. You’re self-conscious because you don't want to have any spots leaking if you will. It’s very difficult to walk when it's in the groin area.
So you stay home a lot, and you try to keep yourself positive, but sometimes mentally it can really affect you. It can be very depressing, and very depressing I might add for your mate and your friends because there's nothing really they can do, and they feel very - I have such wonderful friends - and there's just nothing that they could do. And so this is what gave me such impetus to look for something. I knew there had to be something. And I know it's so important for us to eat right and stay as healthy as we can.
Linda Elsegood: I'm going to press you there. Lori, what would you say your quality of life was on that score of one to 10?
Lori: Oh, I would say about a four. And I'm a pretty positive person, but I'm sorry. Memory lane there for me.
Linda Elsegood: How did you hear about LDN?
Lori: I actually was on the health site, mercola.com, and there was mention about LDN, and so I was looking at all the different symptoms that people were suffering and getting relief; and the diseases that people were getting relief from. So it just struck a note with me. And so I just studied and researched every piece of material, every website; went on the National Institutes of Health website. And then what really, really hit home was the fact that we have so many opioid receptors in the skin. I just couldn't believe it, and I thought this has got to work. This has got to work.
So it was like two or three months of research, everything, any moment I had until I asked one of my physicians and my dermatologist if I could try it. And of course, “No.” She didn't want any red flags. And so I didn't give up. I went to another doctor who actually had the research, and he told me that he didn't feel that it can help, that anything I might've read was anecdotal.
So then on my third try, I looked on the internet, found doctors that were prescribing LDN. It just so happened that one was in the town that I lived in. So I asked him, I said, I'm not coming to you if you don't give me this LDN at the end to try. And I explained my disease, and he goes, you know what, that makes sense. No problem. So that was about 17 months ago, August of 2012 when I started.
Linda Elsegood: When you first started, did you notice any initial side effects?
Lori: You know, all we can say is for the first three or four nights I did wake up during that endorphin peak that I've learned about, around 3:00 AM. But then after those first few days, I fell asleep when my head hit the pillow. I couldn't believe it. And I woke up feeling refreshed and fantastic. Actually, I had more mental clarity than I've had in years. The brain fog was gone. It was exciting.
Linda Elsegood: And how long did it take before you started to notice improvements in your Hailey-Hailey disease?
Lori: I would basically say about three weeks. I started noticing that my skin was clearing up, not weeping the fluid as much, and just healing. It was just amazing. Now when you've had this disease for decades, you get to know what works and what doesn’t. And I knew immediately that the LDN was working for me, and I just felt it would work for others well.
Linda Elsegood: So I'm just trying to get a picture here. Has your Hailey-Hailey disease in these 17 months healed completely? Would you say you've had a period of being clear?
Lori: I have had several months of being clear, but as in life, oftentimes there can be stressful situations. And so there were times when my skin did break out, but it never broke out to the degree that it had in the past. And it still hasn't. I get a few lesion here and there, and as I said, with stress comes all the stress hormones. It seems to trump everything else in our body, every other chemical in our body. So I can honestly say that even with everything that I've gone through in the last year, I would be just a mess if it wasn't for the LDN. I know that.
Linda Elsegood: And would you say that the breakout heals quicker than they did prior to LDN, or about the same?
Lori: No, absolutely - heal quicker. Since the LDN I've never had any breakouts in certain areas of my body - under my arm, just different, different places that I'd normally have the breakouts. I don't have them.
Linda Elsegood: If you did an average now with being on LDN, what would you say your quality of life is, taking into account the breakouts with the periods of remission.
Lori: That it has been nice!
Linda Elsegood: That's amazing. That really is.
Linda Elsegood: So what would you say to other people with Hailey-Hailey disease that are contemplating trying LDN.
Lori: I would say, don't give up. Keep trying to get a doctor to prescribe LDN. It may not be that you will have 100% clearness or continual remission, but it will so much improve the quality of life, of that I’m certain because there's so many of us now.
I started along, with a friend, a Facebook group with these new approaches, where we discuss different approaches - holistic and natural approaches - and we're finding so many are getting such fantastic results with low dose naltrexone. And some are not even changing too much about their protocols, their dietary protocols or whatever, but it seems like about 99% are getting Good to Fantastic results. What I’d say is just don't give up. It took me three doctors, but it'll happen if you just don't give up on that.
Linda Elsegood: Thank you very much, Lori, for sharing your experience with us.
Lori: Oh, thank you so much for having me. And you know, Linda, here is something else that a lot of folks don't realize when it comes to Hailey-Hailey disease:
it's not just the blisters, or the lesions, or the burning. But so many of us suffer from secondary diseases or health issues because of that calcium imbalance. I'm finding more and more of us have suffered from different types of cancer, MS, rheumatoid arthritis, Parkinson's or Alzheimer's. All of these go back, it seems, to that calcium imbalance as well. So that's another reason why I just really advocate LDN because so many folks with those particular health issues and diseases are getting fantastic results as well with low dose naltrexone.
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.