LDN Video Interviews and Presentations

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

Linda Elsegood: I'd like to introduce Alic from England who has fibromyalgia. Welcome. Could you tell me when you were diagnosed with fibromyalgia? 

Alic: I was diagnosed in 2001 um, but obviously, I'd had a lot of symptoms prior to that. 

Linda Elsegood: And what were your symptoms a gradually increase in pain?

Alic: I'd had some of the other symptoms that go with fibromyalgia-like bad headaches and I'd had brain fog, and fatigue for a really long time.

The pain kind of sneaked up on me and I basically got to the point where I couldn't actually put one foot in front of the other one, and I realised that not only did I have a bad back that I'd had for years I actually hurt absolutely everywhere and that's when I went to the doctor and said, "I'm not sure that this is really okay."

Linda Elsegood: How old were you when you were diagnosed?

Alic: I was 36 when I was diagnosed but it took two years from going to the doctor and saying, I really am not okay to get a diagnosis from a consultant rheumatologist. 

Linda Elsegood: So how did you hear about LDN? 

Alic: Well, I started to look when my condition started to deteriorate.

It's kind of been up and down. It used to be much, much worse than it is now, but It started going downhill again about two years ago. I tried to carry on working and doing everything. And then about 12 months ago, it was really getting to an acute phase again. And every so often I did searches on anything new under the sun, and I'd pretty much given up that there was anything.

And then, because it was getting so bad, I was seriously considering having to give up work again. And so I went online to have a look to see If there was anything new. And I came across a YouTube lecture from Stanford talking about fibromyalgia. Right at the end of it he mentioned the pilot LDN study. So that was how I first had even heard of it. I'd never heard of it before then. And because I heard of it, then I wanted to check it out and what my options were for having it because I have literally tried everything else. 

Linda Elsegood: So how did you manage to get a prescription for LDN?

Alic: Finding out about LDN was simple; getting it was not simple. Um, I actually did all the research, downloaded your information pack and took it to my GP. I said, "Look, this is something that I haven't tried yet. I tried everything that everybody has suggested with the most horrendous side effects."

I'm really, really sensitive to medication. Um, so everything I've ever tried medication wise has had quite horrendous side effects So although I've persevered with stuff I tried; in the end, I have to come off pretty much everything.

The only thing that I've ever done that's ever made any significant difference is actually meditation. Um, which obviously doesn't really have any side effects that are negative. So I went to my GP, and I said, "Look, LDN, can I try it? I have tried everything else." "Um," she said, "I've never heard of it. Um, I bet it's horribly expensive."

And I said, "I don't believe it is; I believe it's about 20 pounds a month." And she said, "Pretty much the same as an average antidepressant." Um, I gave her the information pack. She said, "I can't prescribe this, but I can take it back to the practice, and we can have the case discussion. I will get back to you."

Two weeks later, I had heard nothing. I went back to see my GP. She went, "Oh, I've been meaning to get in touch. No way. You can't have it. We won't prescribe it." And I said to her, "Can you tell me why not?" And she said, "Yes, because we don't have any drug addicts at the surgery, so we're not used to the medication."

And I  said, "I'm sorry?"  She said You’re just asking me for opium." And I went, "No, I'm not. It's exactly the opposite of an opiate." So she said, "Well, you can't have it, and it's no good seeing any of the other doctors, 'cause we've just had a case discussion and you're not getting it from us." So I kind of looked at her a little bit, um, gobsmacked and said, "Where do I go from here?"

And she said, "I suggest you buy it off the internet." And I went, "Isn't that a little bit dodgy?" And she said, "Oh yes, you would have to be ever so careful buying drugs off the internet. I'm not recommending it."  So I  said, "Could I see somebody at the pain clinic, could I get a referral? So she said, "That's a really good idea."

She started to write on her computer. Then she said, "Oh, can I just say, if you see a consultant, there is absolutely no way on earth we're  going to prescribe it to you even if they say it would be a good idea." So, I 

thought, "Well I think I've just had kind of a door slammed in my face and a brick wall built behind it."

So I left, and I was actually really distressed, and i wasn't distressed because she wouldn't give it to me. If she'd given me a rationale for why she wouldn't give it to me I wouldn't have had a problem,  but basically she was saying, "I don't know anything about it, so you can't have it." And I live quite rurally and there is a sense of 'how can the patient possibly know anything?'  um, even though I'm a consultant psychologist and obviously got half a brain and I'm very research focused um, I had, I had even printed off, Dr McKay's and, um, Dr Younger's study and give it to the doctor to read and she said, "There's only so much I want to read. I'm not interested in that." So, she didn't even want to find out the LDN for me 

And so I got in touch with you guys via your website, um, and said. "Is there another doctor who you know in my location?" because people had said to me, "Why don't you change GP?" But you have to register with a GP before you get to ask them if they even believe in your condition. Which is another problem I have with my GP because my GP said to me, "Can you even tell me what fibromyalgia is?

Yeah, not very positive. So, um, you guys put me onto the Prescribe for me website. Um, so I went on back, filled in all the details, filled in like a, a health questionnaire. And, um, and then a doctor rang me, asked me lots and lots of questions about all my symptoms, about everything I'd ever tried. And she did say to me, "Gosh, I think you're the first person I've ever spoken to that has literally tried everything that is even possible; apart from LDN." She said that she had concerns about my having LDN because of my sensitivity to medication. I mean, I go into anaphylactic shock and stuff like that, so I'm pretty sensitive. So what she suggested was that she would prescribe it. She did think that I was a good candidate because I had tried everything else.

Um, she suggested that a good way for me to do it was to take half a milligram at night for a week. If that was okay, then to put it up to a milligram for a week and so gradually increase the dose. And then she said if I had started to get to a point where my symptoms deteriorated again, to move back down half a milligram per week until I found effectively what was going to be the best dose for me, assuming that I had any benefit from it.

Um, and she rang me again, um, after a month, and again, I think maybe after a month, another month to see how it was going and to make sure that it was okay for my system and so on and so forth. And so now I fill in my repeat prescription request online and the, uh, the chemist send me the medication direct, um, recorded delivery.

Linda Elsegood: So how did you feel when you first started? Did you have any problems even though it was such a low dose?  

Alic: With the LDN? Yeah. Instantly, um, I had a reaction, which I kinda took to be quite positive. I'd read about, um, the dreaming as the only side effect that people seemed to be complaining of. And sure enough, the second night I took it, even on half a milligram, I had these amazing dreams, not scary at all, but just the detail in them was quite phenomenal and quite interesting. And being a psychologist, obviously, I was even more interested. Yes.

So almost immediately, I think the second night I started, even though it was such a tiny dose, I started to have these really detailed dreams.

Not scary, nothing like that, but just tiny, tiny detail that I could see really vividly. That lasted for about four or five days, and then they stopped. And I took that to be a really positive sign because I thought, my God, if I'm reacting to only half a milligram, um, this might have some benefit.

And then a couple of weeks later when I must've been on about two milligrams by then. And so it would have been like the fourth week. Um, yeah. I started to have the dreams again, but maybe two or three nights, and since then I haven't had any startling dreams, so I didn't have any other negative impact. All the stuff that I take, I didn't have dry mouth. I didn't have brain fog. In fact, if anything, it cleared my mind pretty quickly. Once I got to about, um, two milligrams I started to really notice improvement because my condition was really horrible at that point. Um, so I started to see improvement.

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

Alic: Started to take it at the end of October but obviously increasing it only half a milligram a week it took me a while to get up. When I got up to four milligrams, my symptoms actually started to deteriorate. Um, so I came back down as she'd suggested, and then went slowly back up to four and a half, at four and a half milligrams is too much.

My, um, my pain increases on, it's, um, it's not great. So I actually vary my dose ever so slightly. I'm back down at three milligrams at the minute. I was on three and a half for quite a long time. Um, but I had some additional treatment at the hospital that I kind of feel that I was - not coerced, but, um, persuaded.

I was persuaded by the pain clinic to try a new treatment. Um, which I did. I carried on taking the LDN throughout which they said wouldn't be a problem because obviously it's in your system for such a short time. Um, that treatment, it sensitized me horribly; made my symptoms much worse. I was really poorly for the three weeks that I was having treatment.

Um, so since then I've gone back down to three milligrams, and that's what I'm taking and it's probably taken me five or six weeks to recover from the treatment. And I, um, I started walking last week. I've not been able to walk any distance, but for quite some time. And eight out of the last ten days, I've been able to go for a walk.

I only started six minutes away from the house and then six minutes back and I'm gradually increasing, but I haven't been able to do that for a year. 

Linda Elsegood: As a summary what would you say about LDN? 

Alic: I think for me, the most important thing is not my movement and my reduction in pain. The most important thing for me is the clarity that I now have back in my head.

Um, obviously I'm a consultant, and my work is quite full-on. I work with people with severe and enduring mental health problems. I work with people who are psychotic, so I have to kind of have my wits about me. Um, and I'm involved in, clinical governance in hospitals and things. So I need to be able to think, and having my head back is the absolute best thing.

And I would say the clarity in my head is probably improved 70% of my ability to think, to concentrate, not to lose my thread in conversations, to write reports, all of those things are fantastic. My pain has probably reduced 60% and my fatigue levels is another important thing for me because obviously you can't get up and go to work if you can't get out of bed 'cause you're so tired.

And my, my fatigue I'd say was 80% improved. It's, absolutely phenomenal. It works for me. 

Linda Elsegood: It's fantastic, isn't it?

Alic: Almost is unbelievable. If I wasn't experiencing it, if I was looking for about a 10 20% improvement in my symptoms when I started taking this, just so that I could get on with my life...My husband, my friends, my colleagues cannot believe. But it's like I'm back, I'm back from wherever I've been for the last two years.

Linda Elsegood: Does your GP notice any difference? Have you been back? 

Alic: My GP doesn't speak to me. I guess. I had to go with this throat, cause I've had it for five weeks, this sore throat and she just deals with whatever I have to say. And she, she doesn't mention it.

Linda Elsegood: What would you say to other people with fibromyalgia who are now just beginning to look into it? 

Alic: I would say give it a shot, but because a lot of the people that I know with fibromyalgia, which isn't a huge amount, but I have joined a support group, Um, so my advice would be not to go in at four and a half milligrams. My advice would be to creep it up like I did and see what suits you. But absolutely to give it a shot because nothing else I have tried helped, It gives me really good days, and I have to say, I am not taking any painkillers, and everyone is amazed.

Linda Elsegood: A lot of people I found with fibromyalgia, ended up taking a cocktail of drugs. 

Alic: Absolutely. 

Linda Elsegood: And then each drug carries certain possible side effects, it's like building up this pyramid. 

Alic: Right.

Linda Elsegood: And you're bound to get one of them, aren't you? You know, 

Alic: They are just taking anything that the doctor will give them in the hope that something will relieve, and actually not very much is. But the LDN is so cheap, it doesn't have the side effects, that it must be worth trying. 

Linda Elsegood: Thank you very much for sharing your story with us. I mean, it's so inspirational, and you've done remarkably well since October.

It's such a short period of time that you've taken it. You know, I'd be really interested in probably doing a follow-up with you. Let's say six months time to see how you have 

Alic: No problem. It's like I have my life back. You are more than welcome to get back to me.

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.

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

Linda Elsegood: I'd like to introduce Ali from England and she has ME.

Ali: Hello. 

Linda Elsegood: Could you tell us when you first started getting your symptoms? 

Ali: I'm in my early twenties. I had a lot of tonsillitis and a lot of colds and flu, and I had them removed, and I was well for a year. Um, and then I moved to London, and I started to get really tired for no apparent reason.

Um, and I just picked up everything going. Then I had glandular fever and lots of jabs to go on holiday. Lots of vaccinations. Um, anti-malaria tablets and, um, antibiotics for, um, an abscess on my tooth. And that was it. I came back from holiday and every one said to me, "It doesn't seem like you're very well. And, um, I didn't feel well at all, but, um, I went through the motions, kept going to work.

And then finally, one morning, I woke up and I couldn't walk.   My legs were too painful for me to move. So, I crawled downstairs and phoned in work  and that was it really. And I kept trying to go back in, and they would just send me home 'cause I looked so dreadful and that was round about 1999 and in 2000 I got the diagnosis

Linda Elsegood: And what were you offered from your own GP? 

Um, well, my own GP was saying I was depressed and I was saying if I am depressed it's because I've gained loads of weight, I'm tired, and I'm in pain. Um, but, you know, but while I was down, I didn't think the problem was depression. Um, but the consultant at the ME centre, um, just offered me antidepressants.

And, um, that was about it really; nothing else. He wanted me to go in and spend several thousand pounds on rehabilitation, and I'd looked into it, and seen there wasn't really a treatment protocol at all. It was just a case of pacing, which means having regular breaks and graded exercise, which is doing a little bit more each day.

And I thought, well, I can do that for myself so I don't need to pay to do it. So they were the only options.

Linda Elsegood: So when did you find LDN?

Ali: I had, um, I went to the hospital in 2001 and they thought I had Cushing's. And, um, I didn't; I had polycystic ovaries so that made me change my diet, and I cut out, um, lots of refined foods, um, so I lost a lot of weight and got quite better. I did a lot of Pilates and Yoga, and I was quite well for a few years.

I went back to work um, and then I lost my job again, I was made redundant then followed with a massive, um cold, um, that lasted a year and a half. And down I went again. So, um, I went 'cause I hadn't done any research for a couple of years because I kind of had the ME under control, though it wasn't true at all um I knew that, um, you never know. They were probably making headway with some treatment or something so I went, frantically searching on the internet to find that there wasn't anything still. Um, but I did come across LDN and. I printed off lots of information and went into my doctor. And luckily for me, he has a special interest in ME so he was very open to me trying LDN.So that's what I did. 

Linda Elsegood: And what did you find LDN did for you? 

Ali: Um, when I first took it, this is, um, December 2009. Um, it's coming up to Christmas and I was really desperate to try it because, you know, I  really thought it'd be great if I have some energy over Christmas, and be normal. Um, but when I first started out, it was quite difficult um, and I was one of the people that couldn't sleep very well. So I changed to daytime dosing. And then after a month or so I went back to night time dosing and I've been absolutely fine. Um, it's been wonderful for my fatigue. Um, my usual routine would be to get up about half-past eight, nine o'clock and by two o'clock in the afternoon, after lunch, I would need to rest, um, and probably sleep. I'd sleep for maybe two hours because that's my routine.

But, um, slowly and surely and I hadn't even realized I wasn't sleeping anymore. Um, I didn't need to. So it's, it's the horrible fatigue that you get with ME. And it seems to, I mean if I overdo it I still pay for things, and I'm tired, that horrible fatigue element you get with ME seems to have vanished. Really, I am still tired, but the actual fatigue element has all but gone really and I am still tired but not fatigued, which is one of the nastiest symptoms for me because you can't really do anything.

You can't go out for the day or work because you have to sleep.

Linda Elsegood: So what about pain levels? Have they improved? 

Ali: Yes, I used to get, um, I used to call it my, I've overdone it pain, um, if I did too much. Then I'd get pain, shooting pains in the top of my hips. And then that was my signal that I need to go and rest. But suddenly before I started taking the LDN and I used to get it quite a lot.

I mean, I used to get it on waking in the morning, so I would wake up stiff and in pain and almost immediately I took the LDN that all stopped as well. So the pain in my hips really, I hardly get it at all only if I do too much. So that's made a big difference. I was going to say, my immune system has really picked up because I used to, um, always have a cold. If I was near anyone who had a cold or a virus or anything, I'd pick it up. I had mumps the year before last even though I've had it as a child, you know, I really would just get anything and everything, but I don't anymore and I'm studying, and I sit next to people in the class who are coughing and you know I don't get it so it's really really helped my immunity.

Linda Elsegood:  Did you have any initial side effects when you first started?

Ali: Um, the only side effect that I suffered was, um, not being able to get to sleep. Um, even with, um, sleeping tablets I still suffered, and I had done a bit of research, and I know it says to take LDN at night because that's when the endorphin effect happens.

But I'd also read that it's okay to do daytime dosing. And I did the daytime dosing for a while, and it still worked and I still, you know, wasn't sleeping during the day, and the pain was still better so I thought it still must be working. And then after a few months I thought, I'll try and switch, so I switched back, and I got a really good night's sleep.

I don't know and that's the other thing. I don't wake up through the night anymore. I used to wake up three or four times through the night. You get broken sleep with ME. Um, but I don't do that anymore. I sleep from when I shut my eyes until I'm open they're open again in the morning and I have to get up. Fantastic!

Linda Elsegood:  A lot of people with ME seem to be very sensitive to drugs.

Did you have to have a very slow introduction? 

Ali: I didn't. I didn't start really small, and because I'm getting - I know a lot of people have to get 50 milligram tablets and put them into water and then take you to know inject - no, not inject, use a syringe to take the LDN. I was actually getting mine prepared specially from the pharmacist. I was taking 3.5, 3mg and

um, and looking back, I did have, sort of my symptoms did come to the sort of top first. I did feel quite dreadful for the first few weeks but that soon subsided. I stuck with it. So thinking about it I probably could have started on a smaller dose, but I do have friends that are on a sort of 0.1 of a milligram, and they've been great on it.

So, I think with ME, you are extra sensitive. So if I would say to anyone if they are trying, to probably start really small um like I didn't. Um, but I'm on 5.5 sorry 4.5 mg now. 

Linda Elsegood: So what would you say to other people with ME on top of that who are rather scared of taking LDN? 

Ali: Um, I would say really give it a go.

You really don't know until you've tried it and it has just been wonderful. It's really nice not to have to sleep, you know, lose half a day through sleeping. Um, it's really nice not to have to go down with a cold every few weeks, especially in the cold season. Hmm. Um, and it's nice to have a little bit of energy, just, it's just been such a fantastic drug.

It's such a cheap drug. Um, and I think if you can take enough information to your GP, um, you know, try to persuade him to try, let you try it, um, as well.

Linda Elsegood:  Oh, well, thank you very much.

Ali:  Please stick with it. It can be a bit bumpy at first, but really stick with it, and you'll see the results.

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

inda: I'd like to introduce Alex from England. You take LDN for Multiple Sclerosis. Thank you for joining me, Alex. 

Alex: You're welcome. 

Linda: Could you tell me when have you been diagnosed with Ms?

Alex: I was diagnosed with Ms in 2009.

Linda: Ok. And how old were you? 

Alex: I was about 31.

Linda: Okay. And what were your symptoms that led to your diagnosis? 

Alex: It's quite a long story because they missed around a bit, but one day I was driving to work and my eyes just went very blurry. I was having a problem walking and I thought it was because of that trip, but now looking back it wasn't. They put me on steroids. I got a little bit better. Went back to work. It was a stressful period. And then got diagnosed with relapsing and remitting MS

My Neurologist, he paused for a second and said: " You got Ms".

I found out about LDN through this talking.

Because I spent too much time researching and looking for things that could help. 

 I got it online trough a pharmacy that prescribed it to me. I think it was in Glasgow.

I have been on it a good couple of months.

Linda:  So if we go back to before you started LDN, what symptoms were you experiencing at that time?

Alex: When I wake up in the morning, my legs were like death and I was feeling I wasn't getting a nice sleep. And my boys were saying I was more restricted. And my eyes were messing up quite regularly. 

Linda: You said you were on LDN for how long now? 

Alex: 28 plus 28 plus two days. 

Linda: Okay, so it's like three months. 

Alex: Yeah. Basically.

Linda: So what has LDN done for you in those three months?

Alex:  I am sleeping so much better. When I wake up in the morning, I feel like I had better sleep and my muscles are not stiff anymore so I  can get out of bed and get downstairs with minimal trouble.

I was chatting with my wife last night, and I'm starting to engage more with people. I am trying to put myself out there. It's kind of giving me a push towards being more involved in things.

Linda: Sorry to interrupt you. And the three months you've done very well. When you first started, did you notice any side effects?

Alex:  No. I have had no side effects. There were no big vivid dreams or anything like that. 

I wish now I had gone straight to LDN. For me, it feels like it did so much more to me.

Linda: What would you say to other people who are contemplating trying LDN? 

Alex: Go for it. It's a shame that most of the doctors in this country didn't realize yet how much this does help. Like other drugs out there, there is a variety of other things out there that helps. We are all a bit different and then there is a little bit of trial and error. But it is been so fantastic. 

Linda: Good. Thank you very much for sharing your experience with us.

Alex: Not a problem.

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

Aletha from the United States was diagnosed with Psoriasis at the age of 14/15. She experienced this on her head and sometimes as far down as the back of her neck.

She was prescribed liquid form Low Dose Naltrexone (LDN), and tried it for three months, yet it did not provide any form of benefit at all. Upon telling her GP, Aletha was prescribed the pill form of LDN, and once again, tried it for a further three months. This time the medication worked. Aletha had realised she had not been itching her scalp and, in fact, the psoriasis had gone. She made it very obvious that she recommends LDN to those she feels could benefit from it.

This is a summary of the interview or the whole interview, watch the video.

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

Linda: I would like to introduce Alan from England. Alan has multiple sclerosis.

Alan: Hello. Could you tell us when you first started getting ms symptoms?

Alan: Probably in my early twenties. The best part of 40 years ago. I used to get terrible headaches and tingling in my hands, and, the medical people put it down to migraines and growing pains and that sort of thing. And then they would disappear for years.

I'd get a bad headache, and I'm tingling in my hand now and again but nothing really bad. Nothing that I couldn't cope with. 

I was a young fit man and then back in the early eighties, they came back again. 

The same sort of symptoms came back, but more so, I went to the doctor.  He put me in for an MRI scan but he sort of diagnosed all that symptoms through the stress of my job because I had a massive job that was million times tiring man targets people working for me, travelling all over the country. 

Massive stress job. 

And so I changed my job and all my symptoms disappeared, so I never went back for the results of my MRI scan. 

Probably in 1988, the symptoms came back again.

And so I went back to the doctor and, he said: "Well, I'll send you for another MRI scan but you never came back for your previous scan results ten years earlier", to which I replied: "Well, the symptoms disappeared, so I wasn't really interested. And then he said: " Well, we had a doctor's dilemma that we couldn't tell you, because you didn't come back.

but we suspected you have Multiple Sclerosis at that time. 

 I was really pleased he didn't tell me because I'd had ten years of symptom-free, changed my job, moved house, did all sorts of things, without any worries that I might be able to have later on in my life. 

But when the symptoms all came back again, then they did an MRI again and told me that they were definitely a hundred per cent certain that it was ms.

And, I was totally devastated. I would say I was in the early fifties, pretty fit, playing great tennis, golf nearly every other day. I'm having a great life and all of a sudden they were telling me that in a couple of years I was going to be in a wheelchair. It was some pretty hard time.

Linda: So what were your symptoms at that time?

Alan: Well, my left leg used to get really heavy. If I was doing active things such as playing tennis, I'm like to play one set, and when I play the second set, and if I want it, that was fine. If I lost it, then I'd have to play the third set and I just couldn't run around because it felt as I just had a ball and chain instructed my leg.

So, I was losing the third set, and that was when I went back to the doctor and,  said: "Look, there's definitely something wrong with me, and I want to know what it is." So he told me about the previous MRI scan. 

And then we went from there to see a consultant and a final diagnosis.

Linda: And then what happens further down the road? 

Alan: Well, I got really depressed, terrible. I even attempted suicide and everything. I was succumbing in a terrible state and then all of a sudden I couldn't play tennis, I couldn't play golf. I couldn't go walking in the hills. I couldn't. I couldn't do anything that I used to do before.

I just got myself in a terrible state. I got really down. And then all of a sudden the guy that I was friendly with said:" Well, would you come to play bowls? And I said:" Bowls skim for old men". And he said: "I put his arm around me and said, Alan, you Bleep, bleep, bleep, cripple. And I looked at him and said, do you know what?

You're right. I can't do the things I want to. I'm a semi cripple. Why don't I go and play bowls? And it was like a new lease of life for me. I started playing bowls more than I used to play tennis and golf and things like that and got pretty good at it. Represented England in the Paralympics and, won a silver medal, Linda.

Linda: Oh, wow. 

Alan: Well, bowls saved my life. So, yeah and over the years I've had to manage my MS, until I heard about LDN and, that was just four, five or six years ago. And, I started taking LDN five or six years ago from Bob Lawrence and Swanzey, and I've been on ever since. And, my symptoms have not progressed hardly at all since in five or six years.

I'm virtually no worse now than I was probably six years ago before I started taking it.

Linda: You said you were secondary progressive. Is that right? 

Alan: I was secondary progressive. I was just gradually going down, down, down, and then It's just stopped. I'll go to the oxygen chambers every week and things like this, but,  that didn't really do, it made me feel better, but it didn't really progression.

LDN seems to have stopped it in its tracks.

Linda: Did you have any side effects when you first started?

Alan: Nothing. Absolutely nothing. Within a week of taking it, all the symptoms that I had, was tiredness especially. If I played bowls, I would play in the afternoon.

I'd come home and go to bed and not do anything else for the rest of the day. But that was fine. I could manage that. That's not a problem. Sometimes I would play twice a day, and I'm five years older, and I'm doing a lot more. So I'm like,I will put it all toward him.

Linda: So what else is LDN done to help you? 

Alan: I used to be sore in my muscle all the time, but you learn to live for that, and you don't sort of taking too much of it.

But no, unless I've done an awful lot of like stay, for instance, I drove most of the way now tonight. My leg will be really sore because I'd been sitting around in a car all day and I've done a lot so I take a sleeping pill and, rub some stuff in the leg and things like by tomorrow I'll be back to normal again. The tiredness is the main thing, the pain is another thing. I used to get up three or four times to go to the loo. It may be once or twice now, maybe.

The only thing that I find that affects me is alcohol. Whether that's because of the LDN or ms, I can't drink anything  I used to drink when I was ten years younger. But can anyone of us?

Linda: I don't know. I'm not there yet.

Alan: I can't drink.  Drinking affects my walking and nothing seems to stop that at all. So, I don't drink much at all unless I'm just going from my back patio to the bed and then I might. 

But most of my symptoms are all improved when I started taking LDN.

Linda: Good. So what would you say to other people who have been given that diagnosis of being labelled with multiple sclerosis and they are thinking about the LDN?

Alan: Well, first of all, I would say to anybody that has been diagnosed. It's not the end of the world.

There are certainly lots of worse things you can get it. I'm not saying it's a nice disease, but on the other hand, there's certainly lots worse ones around. And I think a lot of ms is about how well you treat it and your state of mind, etc. So many people say:

how's LDN going to affect my other medicine?" I have no idea but why don't you try it and see what it's like?  My doctor doesn't say I can take it. So, I'm not going to take it. I said:" Fine".  "You know, probably my doctor said, you don't know what it's doing to you in 10 years time"

and I said, will you guarantee I'll be here in ten years?

I say to anybody who's thinking of taking it, try it and see. If it doesn't do you any good, don't take it. But if it does, keep on taking it. So, I'm a big believer that you should try anything that might help you and if it doesn't work, okay.

So you've paid some money, and it cost you some time and effort, I understand but it may have you some good.

Linda: Okay. Well, thank you very much Alan. Any questions or comments you may have. Please email me. I look forward to hearing from you. Thank you for joining us today. We really appreciate it, your company. Until next time, stay safe and keep well.

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

Linda: I'd like to introduce Adrienne who has multiple sclerosis and is from England. Welcome, Adrienne. 

Adrienne: Good morning.

Linda: Thank you. I can still remember meeting you. 

Adrienne: Yeah, 

Linda: it was awesome. So when were you diagnosed with MS? 

Adrienne: About 1977, age 27

Linda: A long time ago. How old were you, and how did the diagnosis affect you? 

Adrienne: Well, yeah, I think it's because. I mess up the many talked about and um, it was sort of like a bolt out of the blue, going to see the specialist. You've got MS background. I can’t say 100%. You got it. But 99%, go for lumbar puncture. Yeah. I ended up getting lumbar puncture, which is very painful and it didn’t do anything different. So. It's a bit of a waste of time. 

Linda: And what were your symptoms at that time? 

Adrienne: I was just tripping up, kept tripping over, you know, and I was walking and really the pins and needles in my legs really, slight blurring of vision. So that was when I was 27. Because you've got children, you've got to keep going. 

Linda: Yeah.

So what happened in the years in between finding LDN? 

Adrienne: It just gradually got worse and worse. My brother was 16 months older than me. He died about 5 years ago at age 52. So I was watching him decline and knowing that I was going to decline. Thanks, I didn’t decline.  Hyperbaric treatment. And the LDN

So the LDN has been a most positive contribution to the alleviation. Stop the spasming.  It makes me less likely to fall asleep during the day.  I'm the help to my feet to think more mentally acute has continued.  My feet...

Linda: When? When did you start taking LDN? 

Adrienne: I think 5 or 6 years ago.

Linda: and were you able to get it from your own GP or did you have to get a private prescription? I have a very understanding physician GP who agreed to cannabis also. He said that he might knock sometimes. That kind of bespoke. Yes. Come up with. I forgot his name, but his mom and I had a, um, acquaintance that day, hyperbaric oxygen treatment.

All, so I looked into the information sent by you. He agreed to let me have a go at it.

Linda:  what did you find it did for you initially? Did you have any side effects?

Adrienne: Slight sleep disturbance. Nowadays still happens, but quite mildly. So now, that's fine.  

Linda: How would you sum up what LDN has done for you? 

Adrienne: Well, I'll be honest, give me a, apart from the vaccines, the problems back then didn't get worse and worse. It makes me feel as though I'm contributing a little bit until improving in inverted commerce—my condition. I talk to the undesirable side effects, lethargy, the mental fogginess because all these, medications suggested I've tried by myself, has made possible to have to tell them how it was espousing, tended to send me doo lally

And that wasn't probably in control of my mental capacity. No, that's a horrible feeling. 

Linda: That's a horrible feeling when you don't feel in control mentally, isn't it? 

Adrienne: Because you, you're aware of it. You're aware. Worried about things, stupid things. 

Linda: Oh, I know. 

Adrienne: That has helped you to seem able to go to act without the horrible side effects of the other medication. 

Linda: Yeah. What would you say to other people who have MS who are contemplating trying LDN?

Adrienne: I recommend it, but I must say that being that once or twice I have recommended it, the person than to cross BMI. Yeah. You have nothing to lose by trying it.

Honestly, him today, it works, yeah. Yeah. I would recommend it.  You know, Each person must work out their own, know what's best for them, their own salvation. 

Linda: Well, thank you very much for sharing your story with us. 

Adrienne: Okay. Thank you so much for all the help and assistance you’ve given me over the last five years.

Adriana - US: Autism (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

This evening I'm joined by Adriana. She's from the United States. Thank you for joining us, Adriana. Could you tell us your story, please?

Adriana: Yes, sure. I have triplets, they will be seven years old on September 30th. Then I noticed the boys when you're around a year and a half, two years old, they were not talking.

They start having kind of autistic behaviours for walking, flapping and to not fall the direction pretty good. That kind of scared me. I have a daughter. She's eight years old, and she developed totally normal with no problems. But with the boys, me and my husband and started to note that something was not quite right.

Then the boys had always dry skin and red pimples growing around their checks and they didn't have normal regular bowel movements. Were like kind of diarrhoea almost every day. They were very skinny and very hard to gain some weight.

The boys were pale colour. They were not looking healthy at all. Then we found this neuro paediatrician in California that, asked us for a lot of blood work. His name is Dr. Michael Goldberg and he's well known in California for treating kids with ADHD, kids that have autism. My boys were from the local paediatrician here, and I live in Idaho Falls. They said the boys are autistic, not too much hope for the future, probably boys would need the iPads with pictures to communicate and we don't see the boys talking never because they're already almost four years old and they were still not talking.

Then we met Dr. Goldberg. We had the blood work done and Dr. Goldberg said: "Look, we're going to do this test  to make sure it's not in your family."  I don't have any kids and my family, all my husband's side family that has autism or mental retardation was something that was all new for us.

And dr. Bill Bruce said: " I'm pretty sure that on the blood work is going to come with the HSV-1 herpes virus very sky-high and the GI inflammation and all the immune system.  And then we identified the boys in the antifungals, antivirus and diets. Then we're going to see if the boys start responding to that.

After about 14 months on Dr. Golder's protocol, the boys start having regular bowel movements, not kind of worry diarrhoea, like before, their skin started getting much better, all that red pimples were gone and then the boys start talking. The boys started with open words, then little sentence and then start building up more sentences.

Then the boys start fading, all that flatting to walking all that autistic symptoms start fading away. And the doctor said: "90% of the kids I'm doing this for 30 years and 99% of the kids that have born classic autistic, the kid says the  HSV-1 herpes virus is sky-high and  GI is like mess with  a lot of inflammation and we need to treat with the antifungals and antivirus and diets."

It's when these kids started having the brain working properly again. The frontal lobe which is the part that's responsible for speech and behaviours is where the virus and the inflammation from the GI shut the doors for speech and behaviours.

We follow Dr. Wellbutrin and I would say 80% of the boys recovered from all the symptoms. My third boy is fully recovered. He is talking, he doesn't have any autistic symptoms anymore. The other two has a little bit more to recover. About six months ago I found about LDN, and I saw some specifical video that say LDN story on a YouTube and in a doctor from Florida was talking about the benefits of LDN for autistic kids. I would say not autistic but kids that have autistic symptoms because it's treatable. I was watching the video and that caught my attention, the benefits of LDN.

And I talked with all the parents too, that was already using LDN and seeing some friends that I have in California, that we're seeing good results with the kids, 3.5 mg dosage for LDN. They get the prescription with their local paediatrician. I talked to my local paediatrician, and she was already working with patients that have cancer and kids with ADHD problems and kids that are very, very hyper or kids that have melted stick symptoms and then was very successful. She asked me if I would like to try it. I said, yes and my boys started with 1 mg.

We build up all the way to 3. The boys right now are taking 3.5 mg every night 8:30 PM, half an hour before bedtime. What I saw after LDN the very quality of sleep. They used to sleep good nights but sometimes waking up in the middle of the night.

Now they can sleep straight the full night with quality sleep because I can tell in the morning you don't have the dark circles anymore. Dr Michael Goldberg, the one that treats my boys in California say the dark circles around the eyes is a big red flag for food allergies.

I learned with LDN that helps with dampen the system because my boys don't have the dark circles anymore around their eyes. There's sleeping pretty good. The eye contact is really good. I saw in the very next day, the boys took LDN in one night and then the next day in the morning, I saw all three with the very, very good brighten fall to look at following directions really good. And then all of the therapists that work with the boys at school or occupational therapy or a speech therapist said, the boys seem really bright and alert. One of my boys was like very hyper and then he seems a way calmer. Another thing that I notice his speech longer.  They're talking in a long clear sentence. Before the LDN, one of my boys, if he wanted a banana, he just would look at me, " Mama banana, please." Now he can say, "Mama, can I have my banana, please?" More clear in a long full sentence. After LDN, instead of just saying water, now he can say, "Mom, can I have water, please?" or Can I have my food, please?" And before he would just say food or I want food, a very short sentence. Now I notice it helps with the speech because they are talking longer sentences in more clear and add new words to that I never saw them talking before.  I'm going to give an example. The other day he asked me for a specific food that he cannot eat and I said, No, Brian, you can not eat that food." and he looked at me straight, and said, "Why not?" He would never say something like that. He looked straight in my eyes and said: "Why not mommy?"

And then I explained it. Now he's coming the why not and the more questions like Can I get my iPad, please?" And using better in longer sentences. And I note his speech is taking off pretty good. That's the LDN and they look healthier. One thing that caught really, really my attention is,  the last blood work before LDN HHV6 was 1.60 and after four to five months on LDN, the HHV6 drop dramatically for 1.04 and Dr. said, that was a huge difference only in three or four months.

Now they called the HHV6 IgG blood test is normal. They are at a normal level now is not sky high anymore. So that caught my attention too. If LDN is helping to drop the high numbers I think LDN works for the entire immune system.

I believe so. And the blood works is showing much better with everything and with the CD4, CD8 cells and everything. Any case cells at a good level too. So I really believe that LDN is really helping the boys and showing they're sleeping better.

The skin is nice and soft, and they look healthier. I'm really happy with the results.

Linda Elsegood: Well, what an amazing story! Thank you very much for sharing it with us.

Adriana: You have a great day.

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.

Adam - US: Multiple Sclerosis(LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Adam: Hi, Linda. 

Linda: Could you tell us when you first started to notice MS symptoms? 

Adam: Well, I was actually diagnosed in January of 2007. I had a lot of symptoms that were unknown for years, prior to that, prior, before 2000.

Linda: Well, what were your symptoms at the time of diagnosis. 

Adam: Well, I had a, a massive migraine kind of headache at the base of my skull. I had long-lasting carpal tunnel symptoms through my arms running up to my shoulders. I had a loss of feeling within my arms, excessive loss of balance, loss of muscle.

There was a kind of tight, extreme fatigue for years, sometimes paralysis when I'd wake up in the morning. Excessive sweating, twitching and bladder and bowel control.  

Linda: so what medication were you offered at that time? 

Adam: Copaxone daily injections. 

Linda: And how old were you then, Adam? 

Adam: 34 

Linda: How did it impact on your life being diagnosed with MS?

Adam: Pardon me? 

Linda: Having the label, MS. 

Adam: Actually, it wasn't bad. The diagnosis was okay. It gave a reason for what was wrong. I didn't think I was crazy at that time. I think a lot of times, being misdiagnosed for, for years with so many different things. That was more of an impact on my life.

Linda: and how did you get on with the Copaxone?  

Linda: Right. So I'll, I'll ask you that last question again. How did you find taking the,  How did you get on with taking Copaxone?

Adam: It was a daily injection. It wasn't so bad, doing the injection. For me, it was more of an impact on the financial burden, to my future how I would afford to be on this medication if by chance I lost my job. Concerns like that. 

Linda: How long did you take Copaxone for? Are you still taking it?

Adam: I took it through starting LDN, and I continued to take it probably about six months after. So I would say I was on Copaxone for at least a year and a half.

Linda:  How did you find LDN? 

Adam: My wife emailed me a YouTube video clip. She joined a support group, and someone had blessed her and sent her a, just a short little YouTube video clip, and she forwarded to me  

Linda: easy to get a prescription for LDN?

Adam: For me, it was, I did my research beforehand. I went while prepared for my neurologist who was prescribing me the Copaxone at the time, and I basically laid it out in front of him and demanded that that's what I was going to try next. And I agreed to continue taking Copaxone at that time.

Linda: And was it easy to get the prescription filled at first?

Adam:  Not necessarily because he didn't understand how to write it. He didn't know much about it. I found out more on my end, how to make it myself, which I don't recommend. Um, but then I think within the first month I was able to get him to write a proper way, you know, a proper script for it.

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

Adam: Zero! My wife said that, that my leg twitched for a couple of or one night. Um, but I don't, I don't think that that was connected.

Linda: And how long did it take for you started to notice improvements?

Adam: Very next morning. 

Linda: What did you notice?

Adam: I went from feeling like I was 85 years old when I would wake up, every day for the last ten years to feeling like I was 15 again. That was the main thing right off the bat. I, I wasn't fatigued. I had a ton of energy, and I couldn't explain why, other than the LDN. 

Linda: Did it help with your other symptoms?

Adam: In time it did. In a very short time, actually, at the time when I started LDN, I had flu-like symptoms that wouldn't go away after two courses of antibiotics. And that flu went away within, I believe, three or four days. A lot of my bladder things like a bladder infection, that went away within two or three days.

Just about everything, all my symptoms that I had with the exception of anything that was permanent, like nerve damage, all of those symptoms went away. 

Linda: If you were to rate your quality of life before LDN on a score of one to 10, what would it have been? 

Adam: Probably about a two.

Linda: And what would you say it is today.

Adam: Probably about an eight. 

Linda: That’s amazing. Isn’t it? that it's very good. It is. What would you say to other people who are contemplating trying LDN? 

Adam: well, if you're contemplating trying LDN, you've already heard about it, which is the first part, and I think that's the most important part. For me, it works.  I'm a strong believer in it.

I tell whoever I can about it. My biggest thing is, you know if you know about it, you should, you should look more into it and don't give up. Just because one doctor says, you know, I don't agree with that because it's maybe not FDA approved in the US or different places like that. Just be persistent and keep trying.  For me, I lucked out, you know?

Linda: so how would you say your life is now? Would you say it's more or less back to normal? 

Adam: I would say it's about 90% back to normal. My biggest benefit, I probably should have said this a couple of minutes ago, but my biggest benefit was I was able to get off of the Copaxone, which is a daily injection. And at that time, when I started at my insurance was paying 2,500 every month. And that fear of, you know, worrying about how I would afford to continue that treatment is away because now I'm able to not rely on daily injections. I don't take them at all. And the LDN costs me $65 like us dollars every three months without insurance.

So it's, it's affordable, and it's, you know, that worry has gone. 

Linda: Did you notice any difference in your health once you stopped taking the Copaxone? 

Adam: When I stopped taking Copaxone? Yes. No, it was, no. 

Adam: Some of the other things that were, you know, leading up to my diagnosis of the ms, you know, those went away after I was diagnosed, but I think with the LDN, I pretty much don't have anything that I really worry about and have any type of symptoms.

Linda: What does your doctor think to improvements since you've been on LDN? 

Adam: he's amazed. However, my doctor, you know, talks a lot and says he'll tell all his patients, but since March of 2008, he hasn't told one person. 

Linda: More importantly, what does your wife think? 

Adam: She's definitely happy and can't believe the change.  We were actually able to conceive.  We had our first son.

Linda:  That’s a blessing. Thank you for sharing your story with us today.

Pharmacist Dr Sam Lebsock - LDN Specialist (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Pharmacist Dr Samantha Lebsock received her Bachelors in Human Biology and Doctorate of Pharmacy from The University of Montana. She began working at Belmar Pharmacy in 2014. She is the Director of Clinical Trials for Belmar Pharma Solutions and the resident LDN specialist. Samantha has become an expert in compounded medication formulations and has become a trusted advisor to providers around the country.

Pharmacist Stephen Dickson - LDN Specialist (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

LDN Specialist Pharmacist Stephen Dickson talks about the need to bring all LDN prescribers and Pharmacists sharing the same information of Low Dose Naltrexone (LDN)