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

Marijke - Australia: Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Marijke from Australia shares her Fibromyalgia and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Marijke was diagnosed with fibromyalgia in 2007 but had began to feel very ill 12 months prior to her diagnosis when she picked up a virus. She remembers being at university and could not move from one chair to another because she was simply so exhausted. Additionally, as well as constant pain in her muscles, Marijke had trouble sleeping following the birth of her first child.

Thankfully Marike discovered Low Dose Naltrexone (LDN), which completely changed her life for the better.

“Although gradually, my symptoms began to disappear. I could sleep better and could concentrate more, which is very important to me as a university lecturer. I used to stand in front of hundreds of students and feel like an idiot when my mind would go blank, but that doesn’t happen anymore.

If you’re thinking about trying LDN and you’ve got fibromyalgia, you’ve just got to try it. Give it three months at least. Even if you ease into it like I did, you’ll begin to notice incredible benefits for your health.”

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

Maria - US: Lupus, Fibromyalgia, Sjogren's (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Maria is from Argentina and now lives in the United states, in California, and is using low dose naltrexone (LDN) for lupus, fibromyalgia and Sjogren's syndrome

"I started getting sick when I was 21.I was experiencing pain in my joints, extreme fatigue and starting having pneumonia but then it happened two years later, and  again three years later.

Later when I was correctly diagnosed, Lupus was attacking tissue in my lung.

Before the diagnose of Lupus I was treated with antibiotics, non-steroid anti-inflammatories and later steroids.

About 5 years ago I was diagnosed with Fibromyalgia and Sjogren's syndrome.

I would have times that I'd be fine for a year or a couple of years, and then I get a flare-up. My quality of life at that point was a 4 out of 10. I couldn't get up and go to work. I had pain all over my body.

I heard about low dose naltrexone (LDN) from some of my friends. I work in biotechnology world in Northern California with an organization that is a nonprofit and developing new biotechnologists for regenerative medicine, mainly focused on curing the diseases of ageing; and I found out that a few of my friends were taking LDN.

One of them suggest me to try and to go on the LDN Research Trust website. I read about it.  I talked to my friends who were taking it, and I realized that it didn't have any negative effects.

I contacted the LDN Research Trust. They gave me a list of doctors and in that list, I got an appointment, and he was in pain management. He prescribed it.

In the beginning I did experienced a lot of dreaming.

I have been taking LDN for a year now. My life got back to normal since I started LDN. I haven't had any flare-ups. A year ago I was taking Prednisone and I could stop taking it. I am taking Hydrochloroquine, 200 milligrams twice a day. I'm going to visit my Rheumatologist very soon, and hopefully, they're going to lower it.

So my quality of life right now is a ten. I haven't had anymore symptoms for the last year.

My eyes are still bothering me. I take Restasis, and I started taking more fish oil, and I think that's helping me.

I encourage everybody who's listening to try it. I don't think there's anything to lose. It's really amazing"!

Summary of Maria's interview, please listen to the video for the full story.

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.

Laurie - US: CFS/ME, Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Laurie from the United States shares her story about using low dose naltrexone (LDN) for Chronic Fatigue Syndrome (CFS) and Fibromyalgia.

Laurie began getting symptoms of her illness at the beginning of the 1980s, but was not diagnosed until 1998. By that time, she could not work, she could not take care of her kids, and her husband quit his job to work from home to be able to help her. She was depressed and suicidal and in a great deal of pain. She had no energy, as well as memory problems and severe insomnia.

It took seeing multiple doctors to find a doctor that recognized that something was wrong with her and the pain and illness was not just in her head. The doctor told her she was depressed because she was sick. She diagnosed Laurie with Epstein Barr, chronic fatigue, and fibromyalgia. She was depressed because she was sick.

Laurie was very sensitive to medications, but found Low Dose Naltrexone (LDN) while researching treatment for fibromyalgia. When she asked her doctor about LDN, the doctor had heard of it, and eventually prescribed Low Dose Naltrexone (LDN) for Laurie. She began LDN at a dose of 0.5 mg, and the next morning she already noticed a difference. She gradually increased her dosage to 3.5 mg, and when she did, she had a few days of increased fatigue, headache and sleepiness, but that went away and she was left with better energy and better sleep. She is decreasing her dosage back to 3 mg, because that’s the dosage where she felt the best. Her pain is 90% better, and her endurance is better, as well as her mood. Her aphasia is better as well, to the point that people around her have noticed. 

This has been a summary of Laurie’s interview. For the whole story, please listen to the recording located at the link above.

Kimberly - US: Cancer, Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Kimberly, from the US takes LDN for fibromyalgia, and she also has a service dog (a cocker spaniel) who takes LDN for liver disease and liver cancer. 

She started her dog on the medication around a year ago, and noticed she could now walk, after spending a year without being able to do so, and is also surviving cancer and liver disease.

Kimberley has been ill with Fibromyalgia for around 17 years. Her symptoms were chronic fatigue at first, which eventually led to not being able to walk for three months after being incredibly active. 

Before taking LDN, Kimberly would spend the majority of her time housebound and depressed. She would also get mouth sores and a chronic cough along with a swollen face occasionally. Sometimes these symptoms lasting weeks upon weeks. Kimberly also mentions feeling pain as though someone has beaten her with a baseball bat. Exhaustion, lack of appetite, migraines and struggling to breathe also were felt regularly.

After taking LDN sourced from her own GP in California, she has felt more stable with an increased quality of life with no side effects.

Kimberly urges that people try the medication when asked if she recommends it saying “LDN can give them the quality of life.” She is very grateful for LDN, for herself and her service dog.

To view the entire interview, watch the video.

Any questions or comments you may have, please Contact Us

Kay - US: Fibromyalgia, Lichen Planopilaris, Chronic Sinusitis, Allergies/Chemical Sensitivities (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda shares a wonderful LDN success story of Kay who suffered for years with fibromyalgia. She had a weak immune system and also had chronic sinus infections, allergies, colds, and migraines constantly. She had immediate relief after starting Low Dose Naltrexone (LDN) a year ago. The pain and other FM symptoms are gone and her energy is back to normal. Her quality of life has gone from 3 to 9 out of 10. Listen to her encouraging story.

Katie - US: Fibromyalgia, 15 Nov 2017 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Katie from the US has been taking Low Dose Naltrexone (LDN) for Fibromyalgia for two years.  In this interview, Katie talks about how her doctor measures her progress with blood work every three to six months looking at the inflammation markers, which have been consistently decreasing. 

Katie suffered from fatigue to such a degree that she had to stop working and her days were pretty grim. Katie says that Low Dose Naltrexone is worth trying primarily because there are no side effects.  Katie says “I think for other people who have fibromyalgia, there can be chemical sensitivities or sensitivities to medications. It's really nice to take a medication [LDN] that has very minimal side effects”.  Katie was unable to return to work but, as she says, she’s not suffering any more and that’s enabled her to do all the social things that she was missing previously. Katie says she feels she now has her life back.

Kat - US: Fibromyalgia, Interstitial Cystitis, RA, Pain (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Kat from the United States shares her story of how low dose naltrexone (LDN) has helped her with fibromyalgia and other chronic pain conditions, including interstitial cystitis, arthritis, and a displaced SI joint.

Kat first developed fibromyalgia, arthritis, and interstitial cystitis in the years following an automobile accident in February of 2004. Her symptoms include extreme fatigue, constant headaches, different odd pains that would come at random, as well as bladder and gastrointestinal problems. She learned about Low Dose Naltrexone (LDN) while searching for treatments for her fibromyalgia. She brought the information packet about LDN to her doctors, who prescribed it for her as it seemed like it was unlikely to do any harm, and it could help her condition.

When she began taking LDN, any side effects were very very slight compared to the reactions she had to other medications her doctors had prescribed. She had a little stomach disturbance and some strange dreams, but those side effects were very short-lived. 

LDN has given Kat decent sleep, a lot more energy now that she’s off narcotics, and she has a clearer mind. Her pain is very much reduced and much more manageable than before. She knows that the LDN provides significant relief because about a month ago, she forgot to put the LDN in her pill organizer, and within three days without LDN, she felt terrible. And not only is the LDN helping with her various pains, but she’s also been sick much less often.

Kat started at 1.5 mg per night, and gradually increased her dosage to 4.5 mg each night. However, she has found that her best dosage is 4.5 mg morning and evening. Kat notes that while she felt a difference on LDN fairly quickly, some people take longer, even months to feel better, so it’s best to be patient when you start taking Low Dose Naltrexone (LDN).

This has been a summary of Kat’s interview. For the whole story, please listen to our recording at the link provided above.

Karalyn - New Zealand: Myasthenia Gravis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Karalyn from New Zealand shares her Myasthenia Gravis and Low Dose Naltrexone (LDN) story. 

Karalyn started getting symptoms of weakness in her legs to begin with and she suffered from unexplained fatigue, her doctors treated her for Fibromyalgia initially but the medication made her worse. Karalyn saw a few neurologists while trying to get a real diagnosis but they still weren’t sure what was going on - this went on for years. Her eyelids were drooping and her speech became slurred. 

Eventually, she got a diagnosis of probable Myasthenia Gravis. Karalyn researched herself, listened to other people’s experiences and eventually found Low Dose Naltrexone (LDN). 

Karalyn took her first dose of 1 mg and woke up the next morning feeling virtually normal again. She increased her dose as directed and says that her progress was absolutely amazing and she had no side effects at all from LDN other than a couple of nights of vivid dreams and disturbed sleep but that passed quickly. 

Karalyn got her life back after taking Low Dose Naltrexone and is very grateful that she found it. 

Julie - England: Fibromyalgia, Lupus (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I’d like to introduce Julie from England who takes LDN, fibromyalgia, and lupus. Thank you for joining me, Julie.

Julie: That's okay. You do it for pleasure.

Linda Elsegood: Could you tell us when you first started to feel unwell?

Julie:Um, it was about 1999 when I looked back. Um, and it was just, I used to get swelling in my left foot. I probably had it about free time.

Um, and then it just goes away. It was when I was really tired, and then it would go away when I sat and, um, You forget about it, you know, you just, um, a secret about it and seeing, oh, I don't know. Maybe he does a dummy or something, but then it went on to about 2006. I got pneumonia. Um, and I was hospitalized for eight days.

I couldn't find why it wasn't bacterial. Um, and in the end, I just kept here on my own. And then. After that, I had a lot of pain, and it's a long time to get over it. Um, and then they said I had side the myalgia, and that went. I was diagnosed in 2007, 2008, with fibromyalgia. And then I just used to have a flare if I would feel if I had a cold, if I had an upset stomach, just as that was passing, I would be then laid completely bedridden, total pain, complete from head to toe And couldn't move my head for about four or five days after being ill.

After that, he called after having an upset stomach and, um, I still, they said it was fibromyalgia. Um, and that went on actually until 2012. When by that time, I was losing weight. Um, I was very, very. Nearly lost my job. Very nearly just come on to it by the tips of my fingers. Um, I had just gone part-time. They made me go part-time because of side myalgia, but, um, I was still just cleaning into it and, um, At the end.

And then I started getting really bad man falses. And by the end of 2012, just at the beginning of 2013, I signed me, got diagnosed with lupus, add alone, along with the side, the mild child.

Linda Elsegood: And before you discovered that LDN, what would you say it now? Which day was like for you.

Julie: I don't remember what day it was going to be like. Um, it was, yeah, might have a good day, but mostly it would be staying on the sofa. Um, not knowing what was wrong. No. You know, just in my, in my head, I want you to do so much, but I just could not physically do it. I just did not do it. Um, in a flare during a flare, you know, all bets were off, but when I was not in a flare, I would still get pain, um, everywhere, even driving with NITSA, just, um, you know, Just get ready to go out and then I'd realize that I'd get to the car.

And then we like actually I've left from the upstairs, and I have to go back to the house. And that would be such an effort. Every day was a struggle good days. And bad days were struggles. I had some better days where I've got a bit more done, but my quality of life wasn't very good at all. And like I said, you know, I was on, I was on the verge of losing my job.

Linda Elsegood: So at that time, if you had to score your quality of life on a score of one to 10 and 10 being the best, What would it been?

Julie:I suppose three, four. I still I'd hoped that it was par. Yeah. Now I still had hope, but, um, yeah, I was very, very down and. And it wasn't depression. I know it wasn't depression because I've not, I don't think I really suffered from depression. I know that depression can be linked with lupus, but for me, it was because of my situation because.

I just couldn't shake it off. I just couldn't shake it off. And you know, you are asleep and think I'll just have a little shape, and it'll be a bit that I'm going to wake up, but I never was. I never was. The fatigue was always there. Pain playing in a net, Lisa random, you know, one day you just wouldn't be able to lift your arm.

It's so random, and I never knew what any day was, you know, I could never plan anything. It would be it depending on how I am, you know, it was just, couldn't make times really, um, and had to cancel things. And

just not going out because. That was my quality of life. You know, it just wasn't, um, letting people down and then feeling that feeling bad because of that. And that would get you down, but I couldn't help it. I just could not help it. I could not do very much at all.

Linda Elsegood: Yeah. Okay. So how did you hear LDM?

Julie: I first heard about it on the internet, um, actually on the health and looked site. Um, the lupus health on Luxilight, which I joined. And I stood up to Chris Steele's, um, video or DVD on YouTube. And I watched that, and I thought, well, I've got to investigate this. So then I just really started investigating, and yeah, I learn for it.

Linda Elsegood: And when you first started, did you notice any introductory side effects?

Julie: I would say, and I would want, this would happen because when I first started here, I was still on steroids. I was on steroids for lupus because other medication that had been on methotrexate for one hadn't agreed with me for that to come off of that.

And I was on steroids. So 10 milligrams a day, um, So I continued to take steroids and started LDN very low. And initially, I'd say maybe three days, three, maybe four days I was on this would happen by my prescribing doctor. The pain got a bit worse. Um, but I persevered, um, And then just slowly, very gradually began reducing steroid, letting it stabilize and up in the LDM, but it was a gradual process.

And I did, I would say about the second week of taking the LDN. I got a cold normally. It's the cold would be subsiding. I would be bedridden with pain, really, really raked with pain everywhere. But I managed to carry on going to work, which for me was fantastic. It was almost like a normal person having a cold.

I managed to work for it. I was tired, and you know, to rest when I got in from work. But. It was great to be able to, to not go into the fare. I didn't go into the flair. And that was the LDM working. I know it was 2000, 2008, any little cold, I, you know, just not used to fix.

Linda Elsegood: So how long have you been on LDN now?

Julie: I started LDN, and I know the day if my mom's birthday or on March 11, 2014.

Okay. And I haven't had to go and work.

Linda Elsegood: I mean, you haven't been on it that long. I mean we're now June.

Julie: Yeah. So like, yeah, exactly. And are now still it free to about the power. Four or five weeks, they were afraid. I'm just an LDN now. And I'm high blood pressure tablets. I still take those. But other than that, there's the occasional occasionally if I do still get pain, but I can cope with it.

It doesn't wear me down. It's all manageable. If I get, at the bad time I will take ascent or paracetamol, but that's it that's the most touch it. That's what I'm taking now.

Linda Elsegood: Okay. And on the score of one to 10, for the quality of life, 10 being the best, what would it be now?

Julie: It's eight or nine. I've still got lupus.

Um, and like you said, it's early days. I'm not cured, but I am living again previously. I was not living. I was just existing, and I can plan, I can plan things. Um, Lastly comment on a union conference for five days managed to do all that previously. I couldn't have said I'll go somewhere. We've worked for five days because I couldn't, I wouldn't have known how I was going to be each day.

So I am living now, and it's great. I'm so I just really, really. 10, if you to give it a try, you've got absolutely nothing to leave and every sheet again,

Linda Elsegood: thank you very much for sharing your wonderful experience with us. It's really amazing. Very inspiring. Thank you.

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.