LDN Video Interviews and Presentations

Radio Show interviews, and Presentations from the LDN 2013, 2014, 2016, 2017, 2018 and 2019 Conferences

They are also on our    Vimeo Channel    and    YouTube Channel

Louise - England: Psoriasis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

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.

Louise - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Louise from England shares her Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Louise was first diagnosed with Multiple Sclerosis (MS) in January 1995 at the age of 26. Working in her local store, she began to notice a constant sensation of pins and needles in her left leg. Going to see her doctor, she was dismissed and told the problem would disappear eventually.

Her MS returned following the birth of her son, when for about a year afterwards her head would not stop spinning. Determined to find a solution, she began to research alternative treatment plans which is when she came across Low Dose Naltrexone (LDN).

Having obtained LDN from a local chemist as her doctors wouldn’t prescribe it for her, Louise is overjoyed with her progress and is able to spend more time with her son.

This is a summary of Louise’s interview. Please listen to the rest of Louise’s story by clicking on the video above.

Lorraine - Scotland: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Lorraine from Scotland has multiple sclerosis (MS), where she first started noticing symptoms in February 2000. She developed extreme headaches, and recalls her scalp was sore, as well as bad weakness on her left side and fatigue. A day after an MRI scan she had received her MS diagnosis.

After taking Low Dose Naltrexone (LDN), she now has that “Wow energy”. To Lorraine it was amazing, and it also kept her awake and more active.

Lorraine heard about LDN through a neighbour who knew someone who was suffering with MS, who advised her to try it. Lorraine did have problems trying to convince her GP to prescribe it to her. Within three days, she felt so much better, she even ended up moving back to work full time. Lorraine even experienced no first initial side effects. Her quality of life has improved 100%, now feeling more human. 

Lorraine recommends people to try Low Dose Naltrexone (LDN), quoting that it will not harm you, so there is no loss to give it a go. 

Please watch the video to view the full interview.

Any questions or comments you may have, please contact us. 

Lorraine - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Lorraine from England who takes Low Dose Naltrexone (LDN)  for multiple sclerosis, she was diagnosed at the age of 36, her legs started to behave rather awkwardly, and had some strange sensations in one leg and a strange sensation at the base of her spine. 

When she was diagnosed she was with her husband and was crying saying “tell me whether I've got multiple sclerosis (MS) or not” After the extensive tests she had to ask again. She found out a week later from her doctor who told her she has MS and was told they would  send some brochures. She felt pretty much on her  own. 

The first 10 years were not too bad and then small things started to happen. She was in a lot of pain. It was excruciating. She refused steroids. That was her first attack. For five to six years, nothing really happened. After about ten years,  she had her second relapse, which left her with some disability. She had numbness in her legs, arms and fingers. 

She started Low Dose Naltrexone (LDN)  about 2 years ago with good success and recommended it to everyone.

Play the video to listen to the whole story.

Any questions or comments you may have, please contact us. 

Lori - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

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.

Lorene - Northern Ireland: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Lorene from Northern Ireland shares her Hailey-Hailey Disease and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Lorene first noticed symptoms when she was around 24 years old. She would see her doctor and be treated for thrush very often. It took 9 years until Lorene was officially diagnosed with Hailey-Hailey Disease.

Within a couple months she noticed that her skin began to blister and boil. It got to the stage where Lorene had to be hospitalised for over 9 weeks. However, everything changed when she discovered the Low Dose Naltrexone (LDN) Facebook page.

“Inside six weeks of starting LDN my skin began to clear up. At one point I burst out crying because I just simply couldn’t believe the progress I was making. I could see my brother again and my life was being pieced back together. None of the nurses could believe my recovery.”

This is a summary of Lorene’s interview. Please listen to the rest of Lorene’s story by clicking on the video above.

Liz - England: Primary Biliary Cirrhosis, Sjögren's Syndrome (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Liz from England shares her Sjögren's Syndrome and Low Dose Naltrexone (LDN) Story on the LDN Radio Show with Linda Elsegood.

Liz first started to notice her symptoms of Sjögren's Syndrome around 12 years ago when she began to get pains in her stomach. Despite numerous tests, doctors dismissed her condition as IBS and wasn’t given any medication. 

While also having troubles with fatigue and sleep, Liz’s quality of life began to decline until she found Low Dose Naltrexone.

“I was going to bed at night and getting up the next morning with huge bags under my eyes. Within a few days of beginning LDN, I was able to sleep properly again which was a great help for my husband. 

To anyone thinking of trying LDN, it really doesn’t do any harm. Even if it only improves your life a bit, it’ll be worth it.”

This is a summary of Liz’s interview. Please listen to the rest of Liz’s story by clicking on the video above.

Lisa - Wales: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Lisa from Wales shares her Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) story.

Lisa was diagnosed with Multiple Sclerosis (MS) in 2006. However, she had been experiencing a serious numbness in her feet and legs for two or three years prior, which progressed to the point where she couldn’t even feel her legs when walking.

Other symptoms began to develop, including fatigue. She explains how she began to feel tired for no apparent reason, which affected her ability to do her job and spend time with her family. 

After committing to researching alternative treatments, Lisa came across Low Dose Naltrexone (LDN) on the internet. Once she managed to obtain a prescription, she was able to think clearly for the first time in years and spend more time with her children.

This is a summary of Lisa’s talk. Please listen to the rest of Lisa’s story by clicking on the video above.

Linda - England: Crohn's, Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda from England shares her Low Dose Naltrexone (LDN) story which she takes for ME/CFS.

She first starts notcing symptoms around 1996, she could barley get out of bed and couldn’t hardly speak.

Once on LDN she did have side effect of very vivid dreams but they went away.

Before LDN her quality of life was 5/10. Now with major improvments in her life she is at a 8/10.

To listen to the full story click the video link.

Any questions or comments you may have, please contact us. I look forward to hearing from you. Thank you for joining us today. 

Linda Elsegood is interviewed by Dr Jess Armine, 2014 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Jess Armine: Good evening everyone. This is Dr Jess Armine here at the bio individualized medical centre in South Eastern Pennsylvania. We have a very exciting show for you tonight. And we have a very special guest. We're going to be talking about LDN or low dose naltrexone, which is being used for the treatment of chronic illnesses.

We have the honour of speaking with Linda Elsegood hope I pronounce that right. And she is the leader in the movement to educate patients and doctors about LDN she'll tell you her story and what she's been doing. You realize that she is the epitome of the tireless individual, the indefatigable individual that is required to get this type of information out to people.

Please understand that this particular interview is being prerecorded. So there will not be an opportunity for live Q and. A. But, uh, Linda tells me that we'll have the methodology of asking questions or getting more information that will cue you in towards the end of the lecture. So, welcome, Linda, how are you today?

Linda Elsegood: Oh, I'm fine. Thank you very much for inviting me. 

Dr Jess Armine: It is our honour. So please tell us your story. 

Linda Elsegood: Okay. My life was working full time. I had two children, so I ran the home, did the cooking, the cleaning, the gardening, the decorating and working. I was a wonder, woman. I thought I could do anything. I was a bank manager at the time, life was fine and I was healthy, which I took for granted. And one day I came home from work and my father phoned. Now my father never ever phoned. He didn't like the phone. And he said, your mother's had a heart attack. She's now going in the ambulance. And I literally just got in and took my coat off. I put my coat back on, to get to the hospital.

My father was in a wheelchair, and the ambulance people wouldn't take him with my mother because he had to have somebody to look after him when he got there. So I said, well, tell them to take you. I will be on my way. And this was Christmas 2000. And um. It's icy. It's been snowing. The roads were terrible.

It would normally take me about an hour and a half to drive that. It took a good two hours. Now my mother took some medication to keep her alive. It was a very major heart attack, and I sat beside her bed. I'm an only child. My husband came and took my father home because they wouldn't let him stay overnight in case there was a fire or whatever. But I had it in my mind that if I held my mother's hand and sat with her, she would be fine. If I went to sleep, she would go to sleep, and that would be it. So I kept myself awake for 48 hours, which is rather silly, but it did make sense to me at the time. And, my mother came home. She had to have somebody look after her. So. I had both my parents here with me. I had to go back to work. A friend of mine was a nurse, and she came and helped me look after my parents, and I was tired.

I was so unbelievably tired. And then I started to get ill. Different things were happening to me. My leg became numb. I had this awful fatigue. I didn't really have the energy to do anything. So what happened then I said to my husband, I'm just having fatigue, I had flu, I had gastroenteritis. I was just so sick I want to go away. I want to go have a vacation, come back, and I'll feel fine. He couldn't come he was working, so I took my youngest daughter and while we were on holiday. We went to Portugal, and it should have been hot. It was Easter time, but it was freezing cold, and it was raining. So we decided to stay in or walk out in the rain. So we went out in the rain, and the left-hand side of my face was numb, it was as if I'd had a filling.

And I couldn't understand why I had this numbness on the face, and the left-hand side of my tongue felt as though I had eaten melted cheese and burnt my tongue. So we managed, and luckily we were only away for a week. And when I came back, I went to see my doctor who sent me to see a neurologist and he thought I had to have a mild stroke or I had a foreign disease of some kind, or I got MS. I didn't really like any of those options.

Dr Jess Armine: I don't blame you. 

Linda Elsegood: Oh, a brain tumour. That was the other thing. 

Dr Jess Armine: that's even better. Yeah. 

Linda Elsegood: I just wanted something where I could say, you know, here's a pill. Go home, and you're going to be fine.

So it went on and on. I was just so tired. I couldn't cope with working five days a week. I went part-time, I only worked four days a week, but that didn't make any difference. And then I got double vision I lost my hearing in my left ear, and at which point I could not move. So I had to give in. I couldn't go to work, I couldn't move. I had an MRI, a lumbar puncture, and was told it was MS.

I had a three-day course of intravenous steroids, and six weeks later I was given another course of intravenous steroids because they thought I was going to lose my hearing and my eyesight completely, which made me put on so much weight on a pale person my face was like a red beach ball. It was unbelievable. I didn't look like myself, but the second course of steroids didn't work. But at that time I was so ill. When I say ill, I was on the toilet the whole time. I didn't have any bladder control and my bowels. I know it's not the done thing to talk about one's bowels, but... Do I explain 

Dr Jess Armine: all the time, the major subject all the time. 

Linda Elsegood: Yeah. It was like sneezing. You know how you feel a sneeze coming, and you go, ah, choo. But it was like that from the bowels, and there was no control at all. It would be a case of it's going to happen, and it would happen. So you don't want to leave the house until what happens, because it happens every day, but never at the same time. Which would have been more convenient, I had no balance. I had to do a furniture walk. People with MS will know what I mean by furniture walking. But I would trip, I would stumble over nothing. I had very bad vertigo, when I moved, everything would spin, and my legs became as though they were rubber bands.

So I used to bounce a lot. So when trying to move, I ended up on the floor most of the time through one reason or another, but the left-hand side, this numbness on my face and my tongue spread, and after a few weeks you could draw a line right down my face, half my, my nose, my tongue, my cheeks, my chest. The whole left-hand side was numb with pins and needles, but numb in a way that any clothing or bedding that touched me was really, really painful.

And on top of that, I had twitching muscles, and I had burning limbs. Like you had a sunburn, and I used to say to my husband feel my legs they are on fire. I don't want to feel your leg, I would say please, please just feel my leg. 

Dr Jess Armine: I know when you're dating, they want to feel your legs

Linda Elsegood: he would feel my legs and say, what are you talking about? Your legs are cold. But to me they were, you know, they were on fire. So, cognitively, Oh my goodness. English became a second language. I couldn't recall vocabulary. Everything was crazy I would try, and I would say, could you make me a cup of tea?

I never ever drink tea. I only drink coffee. So my husband says, well, don't you mean coffee? And I'd say, well, didn't I say coffee? It’s like saying can you let the cat out he wants to go to the toilet. Don't you mean the dog? Well, you know what I mean why do you have to keep correcting me, you're depressing me. Please don't keep correcting me. I think I'm saying it right. And it's really depressing. So he would say to me. I'm telling you, so you'll know for next time. We'll know it doesn't work like that because I think I'm saying it correctly anyway. You know, next time I could call the dog a duck and still think I'm saying dog. But it was depressing. So every time I spoke, he was correcting me.

And then I started to get where I was choking on my food. So every time I swallowed something, he'd come and hit me on the back, and it didn't really help either. The only way I could speak to try and make sense because everything was so muddled in my head. I had to speak slowly, so I sounded as if I'd had a stroke because it was such a struggle. It was so tiring to try and get together the information to make a sentence, which to me made sense, but it didn't to other people. And then I couldn't find my mouth, my daughter used to have to put the cup to my mouth because I couldn't find where my mouth was.

Only saving grace was I slept most of the time. I was asleep for about 20 hours a day. I was only awake for like four hours, which was marvelous because I didn't feel anything while I was asleep. But then I also had pains in my head, really bad pains, and I do believe the doctors thought I was making it up. It used to be a pain size of the top of the wine glass. Sometimes it would be at the front right, sometimes the back left. it would move, but the pain was so intense. It used to make me feel nauseous. So yes, I was taking some very strong painkillers, which made the pain bearable. It didn't remove it. It made it bearable, but the nausea was even worse and I had optic neuritis where I felt like somebody was sticking a pencil in my eye, to move my eyeballs up, down, left or right, really, really painful. And I was in a wheelchair. I could furniture walk in the house, outside of the house I had to use a wheelchair.

And moving forward with now. It was October 2003, and I went to see my neurologist, and he examined me. He sat down. He looked at me, he leant across the desk, held his hand out, shook hands with me, and said, I'm really sorry to tell you, you're secondary progressive; then got up, opened the door and said, there's nothing more we can do for you. And showed me out. 

It was awful. I sat in the car, and I said to my husband, he may as well as say, go home and die quietly; don't make a fuss, you are an embarrassment, you know, there was no plan B. There was nothing anybody could do to help me. It was awful. I felt totally alone, frightened because I couldn't live my life like that.

One day the doctor came out to see me and bought me some more painkillers. I was in the house on my own, and he very kindly fetched me a glass of water and he left. My neighbour was keeping his eye on me, as my husband was working, and I thought the thing that really got to me was the look in everybody's eyes, family and friends. They all felt helpless they all wanted to help me, and there was nothing that anyone could do. And to see that in their eyes was awful.

Dr Jess Armine: I'm sorry. Okay, good. Deep breath. So it's a tough story. I understand. 

Linda Elsegood: So I'd got the tablets, and I thought that the family would understand if I took them. They would know why, and at least that way everybody, once they got over the shock, could be able to get their lives back. I was just lying watching the days passing without me participating, I couldn't do anything. I couldn't achieve anything, anything I wanted to do, I felt a total failure.

Dr Jess Armine: Okay. Take a breath, kid. Relax. Relax. Okay. We really appreciate you sharing your story with us because I know how much this hurts.

Linda Elsegood: Luckily managed to think who was going to find me. Would it be my 15-year-old daughter? So I couldn't do that. The only option was to fight it, to get something so that I could actually live again.

Between my many toilet visits, I used to sit at the computer. I thought there must be other people out there. I couldn't be so unique that I was the only one who ever felt like this. And, I found LDN and, I found some people that were taking it. And luckily. Some of these people were willing to talk to me and everybody said the same, if it wasn't going to do me any good, it wasn't going to do me any harm.

I printed out all the information I had, and I went to see my own doctor, who had retired by then, I had a nice new young lady doctor who was very kind and understanding and she said she was going to give the information to the partners and would I go back in two weeks? I went back, and she said she wasn't able to prescribe it for me, but if it was me, if it was her, she would like to try it so I could find somebody who would prescribe it for me she would be happy to monitor me. Now I found a doctor who would prescribe it for me, and amazingly, in three weeks, this awful feeling in my head where I couldn't think was like living in a television set that wasn't tuned in. All that came back in three weeks, and it was just amazing. I was able to think clearly it was such a big deal. I wasn't talking rubbish anymore.

Dr Jess Armine: So you were speaking coherently. 

Linda Elsegood: Yes. 

Dr Jess Armine: Yes. Wonderful. Wonderful. Yeah, 

Linda Elsegood: but my husband still says, I talk rubbish  (laugh)

It was for three weeks, and that was totally amazing. Now, my daughter, when she was 15, spent the whole of the summer holiday looking after me. Washing me, feeding me, and washing my hair. It was role reversed. So, you know, put your head back, close your eyes, you'll be getting soap in them. 

And guess what: she is now a nurse.

Dr Jess Armine: boy, that's a surprise. Yep. 

Linda Elsegood: She’s worked on a stroke rehabilitation unit for 18 months, and now she would like to train to be a nurse practitioner. She was very good at looking after me, I gradually got my balance back. Now, if you think I'd been years of not being able to carry anything because of the furniture walking, I mean, carrying a glass with anything and it would have just been too dangerous. And one day she said to me, could you get me a glass of orange juice? And I thought I haven't fallen over for a while. I think I can do this. So it was all in slow motion, going to the cupboard, getting the glass out, putting it down, opening the fridge, bringing out the orange juice, then taking it to her. I didn't fill it right up in case I spilt it. But anyway, I took it to her, and I came back, and I said to my husband, I've just taken Laura a glass of orange juice, and I didn't spill it, you know, it was to be a really, really big deal that I did. I'd achieved something.

Dr Jess Armine: beyond a big deal.

Linda Elsegood: Yeah. She didn't know how cognitively I thought I was suffering from some form of Alzheimer's. I thought everything was going to go, you know, the only thing I've got left was my memory, and that was slipping away from me, and that was my biggest fear that I was just going to lose myself completely. She came in with the empty glass and put it on the countertop and said, it's very kind of you to bring me a glass mom, but you didn't put any orange in it. Now because my state of mind had been so bad, I believed her and not myself. I thought I had imagined putting that orange in there and I just burst into tears. I'm thinking, well, that's it. You know, I was afraid I had lost it, but she was joking. 

Dr Jess Armine: Beautiful. 

Linda Elsegood: Honestly, I believed her and not myself

Dr Jess Armine: Well, you have good reason to, and she had good reasons to play with you a little bit and make you giggle. That's great. 

Linda Elsegood: Yeah. So with the LDN I was getting better and better, and I carried on improving for 18 months.

What was I going to do after being told there was nothing more that could do for me in life wasn't worth living. And suddenly it was again, did I say, okay I’m one of the lucky ones. Or do I tell the people who have been told, there's nothing more that can do for you who are in that really deep, dark place who perhaps didn't have the strength to carry on as I did?

So I decided, I wanted to tell everybody, you know, that it's not a miracle drug. It's not a cure. It doesn't help everybody, but it's something that you could try. It took five months, to become a registered charity, the LDN research trust was established ten years ago. So that was a big milestone. And we've helped over 14,000 people around the world.

LDN can work for any condition that has an autoimmune component. And so far we know of 174 conditions that LDN has been used for.

Dr Jess Armine: Let's go back a little bit. If we could, Would you explain to our audience what exactly low dose naltrexone is? 

Linda Elsegood: Okay. Naltrexone in its full strength was used for heroin and drug addiction back in the late seventies, early eighties and not used in low doses. It helps - according to D. Ian Zagon, who did lots of studies of LDN back in the late seventies early eighties - it helps regulate a dysfunctional immune system.

And Dr Bernard Bihari was using it in his practice for AIDS. And the friends of his had got a daughter who had got MS, and he decided that he would try it on this young lady. And it worked very well, and she was on it for many years. She did actually stop after a while thinking that she'd been misdiagnosed and her MS wasn't really MS after all. And when she stopped, she relapsed. Dr Bernad Bihari had been using LDN for many conditions. Cancer too. But that's the problem with LDN. When you say it can be used for all these different conditions, it loses some credibility because it sounds like it's too good to be true. 

Dr Jess Armine: It sounds like a panacea. Anything that's considered a panacea has veracity problems. 

Linda Elsegood: Yes, exactly. So when it was trialed in its full strength and people were taking it 50-milligram tablets three times a day, so it was 150 milligrams, It was only harmful to the liver in doses of 300 mg a day. And with LDN, which stands for low dose naltrexone, people normally take around 3.0 mg to 4.5 mg. So it's a very low dose.

Dr Jess Armine: In your opinion. And not going to hold you to this cause, you know, I realized that in the research nobody really knows the exact mechanism on how this works. But in your opinion, what do you think it works? 

Linda Elsegood: It helps boost endorphins. And it also helps with the Toll-like receptors So there are two different mechanisms there. And there are many YouTube videos from LDN prescribing doctors and scientists explaining how they think that LDN works. But people start on LDN, on a very low dose usually around about 1.5 mg and titrate it up by 0.5 mg every two weeks if tolerated. But in 2005 people were starting on 3.0 mg, and 3.0 mg was too high for some people and was always going to be too high. Some people were dropping out, but by starting on the lower dose and increasing it gradually the fallout rate has really dropped.

And there are different forms in which you can have LDN. Now, initially, it was just capsules. But some people had problems with their stomach. They could get very bad nausea, diarrhoea, especially people with Crohn's and ulcerative colitis. So there is now the capsules and we have a liquid, and there are sublingual drops, which is relatively new. I think the first was about August last year, and that's absorbed differently, which bypasses the stomach. So for those people that had problems with them, stomach issues, that's now no longer a problem.

Years ago it was told you could only take it at night because that's when your body makes more endorphins. But so many doctors have found that it did cause sleep issues with some people, and they tell their patients to try it in the morning, and they still get very good benefits. But full studies and trials are needed to find out.

With LDN it isn’t the case of height, weight ratio, we have many men that can't take 3.0 mg, and these are big men, and you get a very small lady who can take 4.5 mg, no problem. It is what dose suits you best.

Dr Jess Armine: I'm getting the impression that this can support or be effective in a myriad of autoimmune conditions, in your experience in talking to people. And again, I know we're, you know, we have our limitations of what we can talk about, only because we have to be careful about the men in black going to show up at our doors. Okay. But, in raising awareness about LDN, people are still asking I have X. What can you do for it?

What are some of the things that, in your experience and what you've seen, you interacted with a lot of people, obviously, what have you seen? I know it doesn't work with everybody. So with all of those caveats, okay, what are the things that you've seen that works best for.

Linda Elsegood: Okay Crohn's is a really good one, psoriasis, amazing, But with psoriasis, people have to be patient. I mean, there are people who will say that they noticed improvements after the first week, but normally with psoriasis, I would say it takes about six months. And do you know how angry psoriasis looks and red and scabby after six months, normally it starts to look like skin colour and then just all fades. It, to me, just is amazing. It's like normal skin.

Banking was my thing, I wasn’t medical, I had a first-aid certificate that was my whole knowledge of medical conditions. But this lady had alopecia. She also had Crohn's type symptoms and she was a mess. She was a young girl, very, very pretty and she had a high powered job. She has a little small velvety spot that she used to rub that she thought was quite cute, but the small spot spreads and slowly all the hair was just falling out. And her consultant said to her that there were some very pretty scarfs out there these days, she was in her early twenties she was horrified. She lost her eyebrows and her eyelashes, and she said that she'd lost her whole identity. She'd look in the mirror, and she'd gone, she wasn't there. And she thought everything she had was probably autoimmune, she found LDN and started it, and slowly her hair came back. Can you believe her hair came back? 

Dr Jess Armine: I believe anything you tell me 

Linda Elsegood: And, her hair came back black and white or black and grey mottled, even though she was young. People thought she'd had this really expensive colour job done on her hair, and she thought it was quite trendy, and left it as it was. It didn't come back the same texture. It was finer, more like baby hair but she had a full head of hair.

Dr Jess Armine: as you have with chemotherapy, it comes back 

Linda Elsegood: But she got her hair back and to her, that was just absolutely life-changing.

Dr Jess Armine: It sounds to me that if you have a chronic illness, especially in the immunological range, like autoimmune or whatever, LDN sounds like it might be worth a try. What are the risks, benefit factors? Are there any risks using LDN? 

Linda Elsegood: As I say, it was only found harmful if you took 300 milligrams a day of Naltrexone. So it's a safe drug. 

Dr Jess Armine: In low dose. 

Linda Elsegood: Yes. It's not toxic. And it's, of course, it's very inexpensive. People in the States pay around about $26 a month. It's not an expensive drug, but it's out of patent. So. drug companies are not interested in trialing it because there's no profit. But there is a company set up now called TNI  biotech, and they're planning some trials and studies to get LDN out there, and they have promised that LDN would never be more than a dollar a day.

Dr Jess Armine: Wow that's pretty amazing for anybody in the pharmaceutical industry to even say. Here in America, the more, the better. Yeah. More money they can charge for it, the better. 

Linda Elsegood: And we have a new medical advisor called Dr Pradeep Chopra, and he's from Rhode Island. Amazing man he's a pain specialist who uses LDN. You can listen to the interviews on the LDN research trust video channel. Very amazing. 

Dr Jess Armine: I was saying you were very kind to send me a bunch of links that we'll be putting on my website. Is that link included in there?

Linda Elsegood: It should be, he has patients come to him, he's usually the last in the line—people with fibromyalgia, neuropathy, regional pain syndrome. People that have been on morphine and fentanyl patches and that pain is still in between a nine and a ten every day. These are people that have to cope with such bad pain, and there's nothing, and a narcotic. 

He was told that they weren't working anyway, so he weaned them off, which is quite a complex thing. And nobody should ever stop taking any painkillers without medical supervision.

So he got them off these medications and started them on LDN, and he said to me, they came back and the feedback he got was that the pain was bearable. It was still there, but it was bearable, or it had reduced from what it was and for some, it hadn't gone. So he wanted to know whether it was a placebo, so he told these people that he was going to stop the LDN.

So he would know whether it was actually the LDN or mind over matter. So he said to them, okay, you've been on LDN now for this many weeks. Um, I'd like you to stop taking it. And he said, without exception, every single one said, you're not stopping. The LDN is the only thing that's ever worked for me. And he's done one small pilot study on, um, LDN, which he presented.

At the LDN conference in Chicago, he spoke and it was absolutely amazing that something so minuscule can have a better effect for these people than they were having with morphine? Absolutely unbelievable. And I had one doctor I met, and unfortunately, both he and his wife and daughter had MS, and he wanted them to try LDN, he was also a diabetic and had neuropathy. He had no feeling any toes, apart from pain which was awful, he tried LDN. And I think he said in 30 years, the pain that he'd experienced had virtually gone. It was no longer a problem for him. And that was the first time that I'd actually spoken to somebody. This was in around about 2008.

I didn't finish completing my story the numbness and pins and needles went, vertigo went, the balance problems went. I had my bowel and bladder control back. Cognitive, things cleared,  my eyesight is not as good as it was, but it's, it's okay. The hearing in my left ear is back probably 75% of the time, and it's amazing. I can achieve things. I know I've got MS. I'm not back to how I used to be, but if I plan things and pace myself. I can do anything, which is amazing. 

Dr Jess Armine: having a life, isn't it? 

Linda Elsegood: It is called having a life, 

Dr Jess Armine: And, I am so impressed I really am. You got tears in my eyes, right. 

Linda Elsegood: I set up the charity in such a way that nobody would ever get paid. So I work without any pay. But my payment is when people get LDN who's found it very difficult and they've been on it for a while, and they come back and say, thank you so much I feel like me again, or I feel I've been given a second chance, or I feel I've been given my life back. That is just so rewarding.

Dr Jess Armine: Absolutely. If your suffering was to have any meaning, that you've taken that suffering and served your fellow human beings is in this particular and, very expensive manner. You know, I always tell people, when I meet people like you, as I always say, that God has a special place roped off in heaven for you guys. You know, because it's true. 

Uh, I know the questions are going to be, excuse me. Is this a prescribed drug? Does it need to be prescribed by a medical person?

Linda Elsegood: Yes, it's a prescription-only drug.

Dr Jess Armine: Is there a listing of physicians that people can access, whether it's in the UK or United States or Canada? Is there a listing of physicians who are willing to work with people with LDN?

Linda Elsegood: Yes, some don't mind having that information out there, others chooses to operate under the radar. I do have a list ,and if anybody is interested and would like to find an a doctor in their area, if they email me - contact@ldnresearchtrust.org - I'm more than willing to help anybody wherever they live, to find a doctor. 

Dr Jess Armine: And I will, I will put that on during the show and I will have it on my website. It doesn't sound like it's expensive. It sounds like the risk-benefit factor is very low. It sounds like it handles the inflammatory portion of many, many different conditions, which a beautiful thing. There is an indication in what I've read, that there are conferences coming up tell us a little bit about that.

Linda Elsegood: We had one, as I referred to, earlier last year in Chicago, and for your listeners, if they would like to watch the whole conference in separate parts from each speaker, there are 12 parts, if they put in the search bar https://ldnresearchtrust.org/content/ldn-2013-conference

(Note: previously the LDN 2013 Conference was behind a paywall; it now is not.)

Dr Jess Armine: that's reasonable about how much is it? 

Linda Elsegood: It should be $40, but if they put in the code, Jess2014 They will get 25% off, so it will cost $30 instead of the 40

Dr Jess Armine: Thank you so much. You know that's going to be, a beautiful thing for people to listen to, and that's a reasonable price. And like you said, it's to cover costs. 

Linda Elsegood: Yes. We have Dr Pradeep Chopra talking about pain. We have. Dr Jill Smith. If anybody knows anything about the Crohn's, she's done Crohn's research, absolutely amazing work, where she's done an endoscopy and seeing what people's intestines are like. Crohn's is also absolutely awful. Five months later, absolutely clear, like the back of somebody's throat. We had Dr Deanna Wyndham from the Whitaker Wellness Center and she explained she herself had lupus, systemic lupus. She would have died if it hadn't been for LDN. But she uses it in her practice for many different autoimmune conditions, and with children as well.

And I forgot to say, LDN is also used for autism, and can be given in a cream applied to the skin, and that works really well. Dr Jacqueline McCandless did some studies with LDN for autism. She and her husband also did studies for HIV in Mali, which is also a very exciting project that was happening there.

Anyway, the survey should tell you that. So last year, the conference was very good. We had talked about cancer etc, and the air was electric. You could actually feel it crackle. It was a nice thing. And we have another one this year. It's going to be in Las Vegas, and be held over two days next time because we have so many great speakers.

Dr Jess Armine: There's a conference in Las Vegas.

Linda Elsegood: It's going to be November, and it will be the seventh and eighth, which is going to be a Friday and a Saturday. 

Dr Jess Armine: I'm going to do my best to come. 

Linda Elsegood: That would be a nice thing to have you join us.

Dr Jess Armine: Would be great to meet your guys. That is wonderful. So we have just a few minutes left. Believe it or not, the hour went rather quickly, didn't it?

Linda Elsegood: I told you I could talk!

Dr Jess Armine: No, it's good. You were worried about being able to cover stuff, and I said, no, no, no you'll just do it. Okay. Do you have any parting words, anything that you'd like to give as advice to someone out there who may have a chronic problem? How should they go about investigating whether LDN maybe a possible treatment; how should they approach their healthcare practitioner ,and so forth?

Linda Elsegood: Well, we have a doctor's information pack that we always say to people, print it off, take it to your doctor, they need to research it. I mean, there are some doctors that now have heard of LDN.

I think it's a case of if they specialize in a condition, like fibromyalgia or something. The patients are educating the doctors. You know, like you're the sixth person that's asked me for LDN, and they eventually look into it. But I would always say to people, don't take my word for it. Don't take anybody else's word for it. Do your own research. Read up as much as you can and find out if it's something that you think is right for you.

Dr Jess Armine: I want to reiterate the fact that this is a grassroots movement, the patients telling the doctors what they want; and what is that the doctors should learn is catching on. Let me tell you something. I have a lot of physicians who I mentor right now. It's because their patients have been arguing with them saying, you have to know this stuff. I'm getting better because of what Dr so-and-so is doing because he understands X, X, and X. How come you don't?

Six months ago, that doctor would have just said, that's not important. And then they learned that it was good. Doctors will look to train, other doctors will continue to ignore it, and you know, poopoo it away. In which case you change doctors, because let's face it, especially in most of the areas of the country, especially here in Philadelphia, they're not the only game in town. You deserve to be treated well and with respect and with knowledge, and you should demand that your doctors do the appropriate training. Okay? And this is how you bring them the information. Okay.

Such organizations like Linda's. Are invaluable because guess what? Now you have ammunition. Now you have information to say, Hey, this might work. Okay, there's no risk. There's only benefit. Let's try it. And if it's helping me, great. If not, you know, no harm, no foul.

Linda Elsegood: And I think people should try something sooner rather than later,  I've stabilized, and prior to that, I was deteriorating rapidly. It's a progressive disease, but it has halted the disease since I have now been on LDN. It was ten years on the 3rd of December last year. And honestly, I have had no progression since that time.. And I'm touching wood here.

Dr Jess Armine: And the bottom line truly is, if this particular substance gets you to a certain plateau point, and even if you had to take it every day as you said, it's about a dollar a day as opposed to some neuropsychiatric medicines that are better thousand dollars a month.

Okay. So. Again, even if it isn't the total answer and you have a chronic condition that can not be cured, it can be managed, it can be managed more effectively, and you can have a life rather than an existence  Linda, I want to thank you so much for being on our show tonight and sharing your knowledge and sharing your story, sharing your struggles.

You've given me several email addresses and links which will appear on my website. I can tell you that, giving of yourself in this manner, you're going to be helping hundreds and thousands of more people because this will spread the awareness of LDN. I learned a lot from myself tonight. I just want to take the time to thank you for your story. Thank you for you and thank you for all your hard work. 

Linda Elsegood: Thank you. It was my pleasure. 

Dr Jess Armine: Take care. We'll talk to you soon. 

Linda Elsegood: Thank you. Bye. Bye.