LDN Video Interviews and Presentations

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

Linda Elsegood: This morning I'm joined by Anna from England who uses LDN for Secondary Progressive Multiple Sclerosis. Thank you for joining me, Anna.

Anna: That's a pleasure.

Linda Elsegood: How old were you when you first noticed that there was something wrong with you?

Anna: When I first knew something was wrong, I would have been about 14.

 I wasn't diagnosed until 2011 when I was 52 coming up 53 but it made sense as an awful lot of illnesses that I've had through my life.

Linda Elsegood: So what were you noticing when you were 14?

Anna: When I was 14 a doctor said that I had tonsillitis or something like that. I had a lot of flu-like symptoms quite regularly, and if I had actual flu or even a cold, it hung on for ages and ages. And the doctor said it was post flu syndrome or something like that. I thought when I found out, that's what it was. But I also had bad pain too. I have this sort of theory that hormones were involved in.

When I was 11 I was having not proper periods if you know what I mean.

Linda Elsegood:

So before you were diagnosed with MS, what was the typical day like for you? What sort of symptoms in that did you have?

Anna:  I think I had relapsing-remitting throughout my life. I used to remark that every year I had to give something up.

I was quite sporty and every year something went by the ball because it was too much. I was getting nearest to a diagnosis of menopause, so I suppose that it disrupted things and I thought that's what it was. I was so tired, just so tired. I've been with my present partner for about 11 years now.

So he's kind of come through with me and we used to drive into work sometimes, about an hour's drive to get to work and I just can't count for the first day in the car if he was driving, obviously not if I was driving and it was unusual, and I kept thinking: "Oh God, this menopause is really ragging me."

And I had a thought. Your bad back anyway. And that went one day, and that was it. And I got sent to various people to see what was going on.

 I worked for London underground at the time. That's where Bob and I met. And they said: " We're fed up. Were you taking time off? We're going to send you to a specialist, a back specialist." So I went there, and he said:" Something's wrong. This is not just back problems. You need to go to a neurologist." I was like, what? Why should I need a neurologist? And of course, I went there, and the rest is history. I was diagnosed.

Linda Elsegood: With the fatigue anything else?

Anna: Well, the back was bad. My walking was getting worse, but I thought that was to do with the back. But now I realize it's probably an awful lot more than that because I've got slight drops from a left foot. I fell over. I mean, all of the signs were there.

In retrospect, you can see it all. One day walking down platform was a train driver for the underground. So I had a heavy bag. I was walking down with the mate here, the door. I just scuffed the ball of my foot on the ground, which is the one with drop foot. And I went like a Gooden, flew at him, and he said he's nowhere to catch me or get out the way.

And I'm pleased he got out the way because he was about six inches smaller than me. I've probably killed him. But so all of the things like that, and I found that where whenever I walked, particularly on stairs and I always held the rail which previously I hadn't done that. But, so I was losing balance a bit and ability to walk and fatigued, I suppose with the worst symptoms. And still are.

Linda Elsegood: If you had to rate your quality of life on a score of 1 to 10 before you started LDN, 10 being the best, what yours would it be?

Anna: 2

Linda Elsegood: Okay. And how did you hear about LDN?

Anna: I think it was a lady on Facebook who I got talking to on an MS website and she ran an LDN one as well. We've just got chatting about it. I'm pretty sure it was through her.

Linda Elsegood: And how did you manage to get a prescription? Would your own doctor prescribe it for you?

Anna: He didn't even know what I was talking about when I went to the doctor. I mentioned it and he said:" I even haven't heard about it. " And he said:" Let's try this first." And he just wrote another drug to me.

So no, I didn't go through him. I went through the chemist Dickson's. It's in Glasgow. And a doctor at Clinic 158 and again, one lady put me in touch with them and she gave me the details and I've passed on quite a few since then.

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

Anna: The clinic recommended I up it quite quickly and that didn't have any good effects on me because I actually felt like I had the flu each time they up the amount. So I again, talking to this lady on Facebook, she said, try Laura. And I think I was recommended to start 1 or 1.5 mls. I certainly started sleeping better, which of course makes everything else a bit better if you've had a good sleep.

Because I was waking every hour, every two hours,  whereas now I get four to five, no problem. So. It may not sound a lot, but it's much better. I go back to sleep again and that was wonderful. And I did have thought you're more vivid dreams, and I still do occasionally, but that's okay.

They're quite nice actually—some of them.

Linda Elsegood: And how long have you been taken LDN now?

Anna: About a year, I reckon. I think it was about April, May I started last year.

Linda Elsegood: And if you had to rate your quality of life now on that score of one to 10 being the best, what would it be?

Anna: You know what? It is still like a roller coaster with ups and downs but average though, I guess about 6 or 7.

Linda Elsegood:  Well, that's a long way from 2, isn't it?

Anna: It's a big jump from 2. Mostly I feel more settled than I was if that makes sense. Still emotional work occasionally. I cry most days, but it's not long, and it's not as angst written as it was. It's more like a physical function, a bit like having a way I have to have a cry. And I do take Gabapentin as well, which I think works better with the LDN. I'm not sure if that's even possible, but I think it is. And when I'm in need of one of those, I get a bit tearful because it's not chronic pain,

It's just there sort of sharpy that gets you.

Linda Elsegood: Is there anything else you'd like to add?

Anna: No, I was saying that taking LDN is quite a subtle effect but if I don't take it, things get worse. Does that make sense? I'm not trying to reduce the amount of time for why not 4.5 mls and I really didn't notice much difference to taking.

So I've dropped it down to 3.5, and I'm saying if anything changes really, but it seems right. I have spasticity in my right side, and it goes up into my groin, which is really painful.

Linda Elsegood: Thank you very much for sharing your experience with us Anna, and I have to say that I continued improving for 18 months, so let's see what happens in the next six months for you.

Anna: I hope so. That will be nice.

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.

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

Linda Elsegood: I'd like to introduce Anne from England who takes LDN for ME. Thanks for joining me, Anne. 

Ann: It's a pleasure. 

Linda Elsegood: Could you tell me when you first started to notice your ME symptoms, how long ago was - as a child? 

Ann: Actually age three or four, 1978. 

Linda Elsegood: Goodness me, did they recognize it back then?

Ann: No, they didn't. It's hereditary in my case. My grandpa grandfather had it. My Scottish grandfather got it in later life, and he was ill more or less until he ended up his days. He could barely get up. He was in bed until 11 in the morning then came down, had his porridge, went back upstairs, slept, then back down for lunch dressed. Then he sat in the chair for a couple of hours, then back up for sleep, and when he came down for his evening meal. Sitting in the chair then, so 11 to 12, that was his life. And what did they call it? Back then, they didn't know. They thought it was a psychological cause he couldn't speak to people very much. His brain was very bad and you couldn't really speak to him. He didn't join them, the relatives when they came up. He was just a recluse. And my mom had had it as well, but it was triggered in her when she had her children - myself and my brother - and then she could never get up in the morning. She was always limited in energy, but she carried on and nursed me, and tended my brother with pneumonia. And it's amazing that you could do that. But she was just tired and had no energy. Of course, there was nothing done. Nothing.

Linda Elsegood: And did your mother or your grandfather have other symptoms that people often have with ME?

Ann: Well, I think I mentioned my grandfather’s brain was very bad, and he just couldn't socialize, so that was bad enough. And the exhaustion meant that he slept most of the day, which I've just related to you. I think my grandmother did all the accounts and things like that. I'm sure she did that. He could read. He read his newspaper. And noise. We couldn't make a noise, and we went up to live with my grandparents when I was very young. He didn't seem to have a sensitivity to light, because he could read his paper.

My mother did everything fairly normal, but she could never go to my classes and learn things. That's why she didn't go. So she actually was very wise and knew she had no energy, and she adapted to that condition. But you know, she always sat down in the afternoon, and she felt tired the whole time. And when she was 61 she died of cancer.

Linda Elsegood: And you said you had it from about the age of three. What was the pattern of your life? 

Ann: You know how it is with ME, your immune system doesn't fight, and when I had tonsillitis, and they came out, which was the worst thing. I've never felt really well and doing exercise at school, swimming and hockey was really hell. But all the same, I did play games. I played with my brother. And every winter I had a couple of doses of bronchitis, which I have now every year. Until LDN, but I'll explain that later.

So I didn't have a diagnosis at all until I was 59, and struggled because I couldn't get up, couldn’t give up work and I was working all the time. But I had to give up my full-time teaching job in 1976 because I became so ill with - we don't know what it was, but I gave up teaching in Wellingarden city. I moved to Brighton without a penny, actually out of a hundred pounds, something like that. Medical people who could support me didn't because they didn't believe there's anything wrong with me. But that's how it is for many people over my age and younger - the doctors say we should do this and do that, but it was unsympathetic doctoring, usual story. 

Then what happened was I retired, early retirement, I was so lucky. Somebody told me about ME just by checking out of a shop, and in the next lane, a very nice man told me about it. So that was when I got my diagnosis from a doctor locally. I had to pay to get the diagnosis. So then that was the first time I had a diagnosis, and it was such a relief. No, it wasn't MS or the other things that it's labelled. I was terribly, terribly lucky because it wasn't my usual GP I saw. It was somebody who was substituting for him at that particular time? And I got the tip-off to go to him to get my physical examination, which I had to have to retire early. So I went there, and of course, he knew about ME because he asked me if I have vivid dreams, vivid colour dreams. Well, I do because it shows the brain's not working so. 

It has a reaction, you know, you don't suddenly stop teaching, So I was ill for a year and that sort of thing in bed when I wasn't working. Before that, I was teaching, part-time. I had a job for 2 days a week of teaching art. I suddenly couldn't do it. I had to tell lies to the unemployment people and say that there weren't the jobs, instead of telling the truth and say I was ill. So I did that for a long time. And since I've been retired many years, plus, I still had symptoms. I'm talking about the past now, not since taking LDN.

Linda Elsegood:  Could you tell us how you heard about LDN?

Ann: Yes, it was a friend, friend of mine who had this little girl who was not well for years. I remember seeing her child who was then grown up. She was a university student and was trying LDN at the time. So I got the details from her. And information of where she went to get it. So that's how I came to hear about it. And I followed the trail. 

Linda Elsegood: And how long ago was that? When, when did you start LDN? 

Ann: Oh, about a year and a bit now.

Linda Elsegood: So you got your LDN and what was your journey then?

Ann: The journey took a very great while. I saw this doctor at Burswood Christian Hospital. It is way away from here, and I went with this doctor who was taking LDN and my mother, to see this doctor who is very, very sharp. He gave me instructions on how to do it gradually. So then I went away and started doing it very slowly, and I didn't see anything happening in the beginning, but then suddenly I realized I've been taking it all last winter and I never had an attack of bronchitis where I had to go to bed. I had the chest symptoms, but they didn't materialize into such severity that I had to stay in bed. So that was the first thing that I noticed about this. I could plan a little more than I was used to doing. 

My brain symptoms were always severe, and foggy brain is used as a method of description of our brain symptoms. Going back to childhood, I had brain symptoms then. I couldn't concentrate on mathematics.  I just couldn't remember the facts at school. But nonetheless, I used to get a prize there for art and music, which must've been that that side of the brain could actually function more than the factual side of the brain.

And I noticed that I could hardly get myself out of bed in the mornings, usually, I have to go have breakfast and go back to bed, and now I can wake at 8 o'clock in the morning and then get up and go out after that and do something in the morning.

I've always had a car and been able to drive the days as I'm not too ill. So on those days I go out and see gardens, national trust, you name it. It's a lovely sort of thing to do. And I have my evenings as well. As well, before I got the diagnosis and took LDN, I could only walk as far as the length of the house, but then with taking LDN, I could go farther and walk around the garden and just have no reaction afterwards. So I've noticed those things. The main thing is more energy. For example, for 13 years I’ve been in this flat. I didn't have the energy to redecorate it. I had it done. I did all the packing up of the ordinance and things like that, and I was able to go with the painter to get the paint.

All those things I could never have done before. Yes, absolutely. I was at the stage wherein the evening after using my brain during the day for the normal routine things, sort of cooking and running your own life with all the paperwork you have to do and the signing of everything, it's a lot easier. It's just easier to do, without having this sort of reaction afterwards. So I could do that. I haven't been on holiday yet. I used to go sometimes to Scotland. I might be able to again. 

Linda Elsegood: It sounds as though you are definitely getting your life back on track and after all this time.

Ann: Well yes, absolutely. And there's a spiritual side to this, which I won't go into because this is not the nature of this interview, really. The interview is for facts and the result that LDN has had on my life. 

I still find the computer to be very difficult to look at the screen for an amount of time. You know, we can't concentrate and what's in front of us. I still find that odd, but at least I can send an email on those good days. I can do that. 

Linda Elsegood: That's good. And hopefully, over time, things will continue improving for you. 

Ann: I think I improved for about 18 months on LDN and got stronger as time went on.

And one thing I was going to say - everything was going on right, I was ordering the LDN from Glasgow. The doctor wrote me a six-month prescription, and I sent it to Glasgow, and they were sending me LDN. Then came the time when I was running out, and I rang for appointments at Burswood. They thought the doctor wouldn't give me a prescription without seeing me, and I ran out. Without it, I was so ill, as the symptoms all came back because I'd stopped something that I've been having for nearly a year, So I won't let that happen again. This shows a lack of judgment that we have. I could have phoned them and say, look, I must have a prescription, but I didn't think of doing that. Anyway, I've got it now, and it's taken me a couple of months to get back to where I was before. I also drive myself, because the last time I went with friends of my friends and I was absolutely exhausted mentally. So I go on my own now.

Linda Elsegood: Thank you very much for sharing your experience with ME, Ann. I really do appreciate it. 

Ann: It's a pleasure. I hope it's been of some help.

Linda Elsegood: Any questions or comments you may have, please Contact Us on our website at https://ldnresearchtrust.org/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.

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

Linda Elsegood: I'd like to introduce Anita from England. She takes LDM for multiple sclerosis. Good morning, Anita, 

Anita: Good morning. 

Linda Elsegood: Could you tell me when you were diagnosed with MS. 

Anita: Eight years ago, eight, yeah, eight, nine years ago. 

It took a long time, I think, to diagnose. I had lots of tests first. 

It wasn't this, it wasn't that, and eventually, after a lumbar puncture, it was diagnosed as MS.

It must have been longer than that then, I was about 46. Right. 

Linda Elsegood: And what impact does the diagnosis have on you?  

Anita: Well, I was in shock at first. So I must be honest, I didn't believe it, I was in denial. I really didn't think I had it as being a carer. A lot of my clients had MS and, um well, I didn't. I wouldn't accept it first, that I had it too.

Linda Elsegood: So the time you were diagnosed, you said it took quite a while. What were your symptoms at that time? 

Anita:  At times there were bouts where I lost all sense of balance; being sick all the time. On these occasions, normally, the doctor would give me an injection. I would try and sleep through a lot of it because that's all I could do.

Basically just continually being sick and my balance is all. Oh, and my waterworks actually, I didn't have a lot of control on occasions with my waterworks.

I was gonna stay working for the money but it is a disease and bursitis and everything and me, which is to do with balance and that. 

Linda Elsegood: So before you found LDN, how were your symptoms? 

Anita: So I had a severe attack, I can’t remember the year now when I ended up in a wheelchair. I was in a wheelchair for three years. Towards the end, I actually went on  LDN, which, helped me enormously. 

I was on Gabapentin, and all the drugs I was on I was a drowsy mess. I think I, you know, a lot of the time I wasn't really with it.

I was, you know, on so much medication that I was quite drowsy all the time. I only take the LDN now. 

Linda Elsegood: Well, let's, let's just try to stop short to what you were like before LDN. So before you started, what would you have deemed to be the quality of life on a score of one to 10. And 10 is the best. 

Anita: Right. Then about 4 really, cause I 

was feeling the wheelchair.

Linda Elsegood: Okay. And what would you say is today? 

Anita: Uh, seven. 

Linda Elsegood: Right. And may we learn how you heard about LDN? 

Aniya: I had just got hyperbaric therapy and one of the ladies there was on it. She told me about it, and I went online and obviously researched it, and I thought it looks 

quite good, well worth trying.

Linda:  Did you manage to get it from your doctor? 

Anita:  No, no. I live in Cornwall, and I get it from Dr Lawerence in Wales, though the actual prescription comes from Scotland. 

Linda Elsegood: Okay. When you first started, did you notice any introductory side effects?  

Anita: No, not really. Perhaps a little, as sleeping was a little problem, not sleeping too well, but that lasted a week, ten days.

So how was yours? Mm. Um, occasionally, I still, I'm a waterworks, uh, occasionally, um, on walking with a machine, I don't know if you've heard of them, which helps me. I am actually up and walking with, with this stick using the machine, which helps me to lift my left foot only. I have a problem with that. I manage to go quite a bit. I can walk on the flat now without the machine, but I do need it if I, you know, if I'm walking long walks or, uh, where Hills are involved.

Linda Elsegood: So you continue taking the LDN with us. The only drug you're taking now?    

Anita: Yes, yes.

Linda Elsegood:  Oh, that's good.

Anita:  I used to get real bad spasms, which have gradually disappeared. I don't get them at all now on the LDN. 

Linda Elsegood: That's very good. What would you say to other people that are thinking of trying LDN?

Anita: I would say it's well worth trying. I've found it to be very good, even mentally because, I was quite depressed for a time because being quite sporty and active before, it was quite a shock, to end up being in the wheelchair.  It's improved my quality of life. No end. And I’ve actually stopped the hyperbaric therapy, which was helping me.

I've stopped now because the LDN actually, helps with what the hyperbaric therapy was helping with.

Linda Elsegood: Is there anything else you'd like to mention? 

Anita: Well, I think it is a very good drug, and it helps me in all the ways with more shakes and everything. You know, everything. Well with MS, it seems to have helped me. 

Linda Elsegood: Thank you for sharing. 

Anita: That‘s a very little drug to take, you know, I'm only on the one drug instead of lots of different drugs, and it's not one that makes you drowsy.

Linda Elsegood: Yes. The fewer drugs you can put in your body, the better, isn't it? 

Anita: Of course. Yes, definitely. I do take quite a few supplements, like fish oils and zinc and things like that, which is helpful with LDN, as Dr. Lawerence said, which, I guess helps in slowing the disease when you're on LDN.

I have talked to others you know when I was going for the hyperbaric therapy I did. Actually, I like to chat with other people that I know are on it and they seem to benefit from it as well. Plus the lady obviously, who informed me about in the first place, she's improved.

She was never out of the wheelchair and she was a lot worse than I was.  and she's come walking with two sticks now. So yeah. Very good.

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

Linda Elsegood: I'd like to introduce Angela from Wales who has Multiple Sclerosis. Welcome, Angela!

Angela: Hi, Linda!

Linda Elsegood: Could you tell us when you first noticed your MS symptoms?

Angela: I think it was about 6 years ago, but I didn't know obviously that it was MS.

I think the first sign was when I noticed I woke up in the morning and one of my legs was feeling very numb.

 I think that went on for a couple of months and I just put it down to sleep. Being busy, working and with a family, I just ignored it, and it just went away. So I didn't think anything more of it. I think about 5 years ago I'd come back from a holiday in Canada and thought I had a virus.

I went back and forth to the doctors. They couldn't diagnose what was wrong with me. Then I lost all the feeling in my legs from my feet right up to my head and obviously got admitted into a hospital for tests and was eventually diagnosed.

 Linda Elsegood: What impact did it have on you being diagnosed?

Angela: It was very tough. I recently got divorced and it wasn't a great time. And it might've been to do with the sort of stress of that situation. My mother-in-law from my ex-husband had MS, and she had it for many years. I just thought I was going to end up the same state as she was, which wasn't great.

There was no real treatment that she seemed to have. She could hardly walk. She's in a wheelchair and basically didn't do anything with her life so I thought it was tough ending up like that.

Linda Elsegood: It's a very scary prospect, isn't it?

Angela: It was. When the consultant when I first was in the hospital said: " I think you're too old to have the MS." I was 46 at the time and then, of course, when they did the MRI scan and I came back to see her, and he said, well, no, actually you have MS. And thank you very much. Bye-bye. And handed me over to be off the floor. The consultants aren't that great at dealing with this sort of thing.  I just found it really difficult to talk to anyone because I just had in my mind this picture of my mother in law so it wasn't great.

But then you pick your server, and I think, they review you after 3 months, that to see whether you've got the real nasty type, and after 3 months then, maybe you realize it's not as bad. Your life still can carry on even with this diagnosis.

Linda Elsegood: So what was your MS like before you found LDN?

Angela: I think it was getting steadily. They say I have a benign type. I don't think I have the relapsing-remitting type, but every day I have symptoms.  I remember it was a Christmas time, and my daughter had come with me to try and go shopping, and I literally walked into a max shop with my daughter.

We just really walked into the shop, and I just had to say to her," I'm sorry, I've got to turn around and go home." I just felt I couldn't even walk around the shop. My legs just felt so bad that day, so it was like the numbness and the weird sensation, you know?

So I just knew. They weren't going to carry me the shop. So I, it had a huge effect on the quality of your life because I was still working, I'm still working now but I wasn't there without the LDN if I would still be working. The sort of extremes of temperature really affect and we were having a pretty cold winter. It just sort of really limit what I could do. I don't think the LDN has had any miraculous effect, but I think, most of the time keeps me stable and it hasn't gotten worse. I've had a bad virus of that time, and I've had a few problems since then with the mobility, but I think that's bound to the virus.

I think in terms of the fatigue it's had a huge effect on just keeping going and keeping outdoors. I think it's kept me stable.  I don't know where I would be  but I know at that time I was really starting to struggle.

For the next two years after I had this virus My mobility hasn't been perfect by any means but it definitely improved things. I think it gave me a bit more confidence. You sort of tending to sing like, no, I can't go out. I can't do this. I can't do that.

I mean, the only side effects I had when I first started to take it, I have a lot of spasms in my legs and I had a lot of muscle stiffness for the first two weeks, so I said: " Oh my goodness, this is going to make me worse."

But I persevered with it, and it's been fine. I haven't had any sort of bad sleep or anything like that. I tried to take the LDN in the morning and that doesn't suit me. It suits me better to take it in the night. So I just take a tablet at night from and that seems to work better for me.

Linda Elsegood: Did you have any other side effects?

Angela: I had the usual, sort of a nice fog, bad headaches, feeling a bit spaced out, dizzy and fatigued basically.

It was just horrendous, lots of sensation, bladder problems. I was taking antibiotics because I was having constant infections but now I realize all these years later that it was probably the MS. Now I haven't taken antibiotics for over 18 months I think. So I think it's definitely had an effect there. It's helped the bladder problems, the fatigue. At one point I was starting to get, not depressed, but starting to get very down about it all so it's helped to keep me positive with things. Once you lose your positivity, then you might as well give up.

Linda Elsegood: So how would you compare your quality of life now with before LDN?

Angela: Until I had this recent virus I would push myself to do more or less what I used to do. But within limitations I know I can't go walking huge distances but  I kept working. I've kept trying to keep the standard of what I do in my work up to what I used to do. I just feel it stabilize me somehow. I really didn't know where things were going to end up. I just thought my general wellbeing was a lot better. I think it lifts my energy levels really.

The other things that I used to have was problems in my eyes, flushing lights and  I'd see lots of spots in front of me. I don't seem to have so much in that either so I guess I got to rely on LDN and keep on thinking,  I'm afraid not to take it now because I don't know where I would be. Some people might think it's a placebo but I just feel it stabilized me certainly.

This virus has given me a bit of bronchitis but LDN keeps me stable.

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

Angela: In the job I do, I've got lots of people, 9,000 people at work.

Some of them unfortunately also have MS, and they're very scared to take anything without a neurologist or doctor's advice. And what I would say is,l:" As far as I'm aware, there are no side effects." I think for the type of ms that I have, there are no treatments, no drugs so it's not doing me any harm.

It may be going good. I don't think you've got anything to lose really. Some of the drugs and I've been lucky enough not to need them, like Methotrexate it is basically poison, isn't it? So you're poisoning your system. I mean, they are drugs that they use for chemotherapy. As I understand it,  there must be a body of research in LDN to show that there aren't huge amounts of side effects. It goes to your system for four hours and it doesn't affect any of your major organs or anything else. So why wouldn't you try it?  I would just say give it a try. It might work for you, It might not,  It might have fantastic results just like me,  to keep you stable. All I can ask for is to try it. The medical profession doesn't have all the answers. If enough of us are taking this and finding benefit from it, then just gotta be something in there.

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

Angela: You're welcome.

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.

Angela - Ireland: Alopecia Universalis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Angela from Ireland shares her Alopecia and LDN Story on the LDN Radio Show with Linda Elsegood.

Angela first noticed her loss of her when she ran her hand through her hair and found a small patch of hair was missing at the back of her neck. In the following weeks, she noticed that upon showering, she would be seeing considerable amounts of hair on the floor beneath her.

In search of new alternative treatments due to the failure of conventional methods, Angela came across Low Dose Naltrexone (LDN) and began her prescription in late 2009. Within 18 months, she had 90% of her hair back.

In this interview she emphasises that she owes her recovery to LDN and recommends it to all who are interested.

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

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

Linda Elsegood: I'd like to introduce Andy from Wales, and Andy has multiple sclerosis. Welcome, Andy. Could you tell us when were you diagnosed? 

Andy: Thank you. May 2005

Linda Elsegood: All right, and how old were you at the time? 

Andy: I was a 49. 

Linda Elsegood: So what was it like being diagnosed? What sort of symptoms did you have at that time had you had them for long?

Andy: I probably had symptoms for about 9 months, the first symptom was eyesight really, I suppose, the diagnosis, shortly after the lumbar puncture, the MS seemed to come on, I was getting this numbness in my thighs and I developed a limp on my right leg, coldness. Yeah, cold, cold leg sort of thing. And that's actually how it started, right? 

Linda Elsegood: Well, then how did it progress? 

Andy: Pretty rapidly, really within six months of being diagnosed, I couldn’t work and when I was walking I was staggering like I was drunk, quite depressed. My eyesight was rapidly going, very cold legs, a lot of numbness. Then eventually, my hands were losing strength, quite weak in the hands and then she developed the MS hug but people know about that. And then, I suppose by March 2006, I was partly using a wheelchair. Depression and suicidal thoughts. I went downhill so rapid, right? 

Linda Elsegood: But it's also, as you were saying about walking staggering as though you're drunk. It's very depressing when people assume they see somebody staggering, you're immediately labelled as somebody who's drunk who doesn't know what they're doing and shouldn't they know better—only 10 o'clock in the morning kind of thing. 

Andy: Exactly. You’ve just got no control over it really,  it’s quite embarrassing really. After a few months of being diagnosed, I was using a walking stick, it was a rapid downhill regression. 

Linda Elsegood: What kind of MS have you been diagnosed with?

Andy: Well, they couldn't put their finger on it, but it's probably progressive in my opinion. I'm not relapsing or that type of thing. I think it’s primary progressive. 

Linda Elsegood:  So how did you learn about LDN?

Andy: Well, the first thing I knew was there's a TV program on our local news, BBC Wales and a chap called Dr Boblow from Swansea, he had a patient, a lady who's having trouble reading there, and she couldn't focus their eyes on the page, and she couldn't read in books, and she started to use LDN, and the short time she was able to read books again and she was feeling much better. Okay, well let's find out some more about it. So it's the honour society website, to see what people are talking about.

So I asked a few people who've been on LDN for, well, it seems quite a safe drug and there's nothing else available for me, really. So let's give it a go.  

Linda Elsegood: so did your own doctor prescribe LDN for you? 

Andy: No. No. he offered STEM cell treatment, I didn’t want to do that really. I thought LDN seemed quite safe really so i thought I've got nothing to lose. Right, 

Linda Elsegood: so you've got it privately. 

Andy: Yeah, I had a private consultation online, and basically this doctor asked a few questions and wrote me a prescription and sent it to the supplier, Dicksons, up in Glasgow. It took a few days to come and then I started the drug.  

Linda Elsegood: how long have you been taking LDN now? 

Andy: March 2006 I started. So about 5 years. 

Linda Elsegood: Yeah, so how has it helped with your MS? 

Andy: Oh massively, My eyesight started to come back, it sometimes goes a little bit but it comes back again.  In terms of the MS, I’ve got much more feeling back in my legs. The coldness is more or less gone most of the time. The strength in my hands has come back and said my eyesight's fine. And I've still got a bit of a limp on my right leg, it doesn't bother me. I mean, my leg doesn’t feel like it used to but it’s better than before. It’s vastly improved my life and the only thing I can put that down to is the LDN. 

Linda Elsegood: Do you have any MS symptoms now? 

Andy: Yeah, I mean I get a bit of nerve pain in my right foot, I think I've got rid of most of the pain. I can’t drive long distances. I can drive maybe 50 miles because of the pain in my right foot, especially when it’s enclosed in a shoe. So yeah, I would say before I started LDN I couldn't even drive. I've got a pretty decent lifestyle now. I do okay, my legs get a bit wobbly but in general, I’m pretty good.

Linda Elsegood:  Yes. So did you have any initial side effects when you started taking LDN? 

Andy: I think the usual ones, vivid dreams and a bit of insomnia, they don’t last too long really, that's it. Some people get slightly worse but it didn’t seem to affect me that way. And I think I started off at 3 mg. I'm up to four 4.5 now. So no, no real side effects as such.

Linda Elsegood: will you continue to take LDN. 

Andy: Yeah. It's the best thing I've got. 

Linda Elsegood: So what would you say to other people with MS who are thinking of trying LDN? 

Andy: Oh, I'd say try it, without a shadow of a doubt, you’ve got nothing to lose, if it doesn’t work you come off it and you’re back to how you were. I think some people give up on the LDN because you feel worse initially. My advice is just to stick with it. Give it at least a month. If you are feeling a bit worse just lower the dose and build it gradually, you'll know the dose and just build a practice. It seems to work for most people, it won’t work for all. It’s worth a try. It can change your life so much.

Linda Elsegood: So what does your wife think of the changes in you? 

Andy: Oh wow, she's amazed.

Linda Elsegood: So would you, would you say that you've got quality of life back? 

Andy: Oh, definitely. Definitely. I'm back at work for the full time.  I'm doing the best I can right now.  I'm not complaining, I’ve been lucky I found the LDN.

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

I'd like to introduce Amarjid from India who takes LDN for CFS/ME.

Thank you for joining me. Could you tell me when you first started to notice any symptoms?

Amarjid: I'm 72 now. I had been suffering from it since I was a small child.

Linda Elsegood: Really? Wow.

Amarjid: A long time. Yes, all my life I suffered from Chronic Fatigue Syndrome.

Linda Elsegood: And how did that impact on your life?

Amarjid: I have not been able to work since 1975. It gives me extreme tiredness and aching in almost all the muscles of the body.

Linda Elsegood: And what would you say, before you heard about LDN, what would you have scored your quality of life on a score of one to 10 and 10 being the best?

Amarjid: It's still there before LDN only have to be about 10%.

Linda Elsegood: What would you have said your quality of life was like on a scale of one to 10 before?

Amarjid: It was really bad and it still bad. Then I felt 10% better.

Linda Elsegood: What had it done to help you? How did LDN help? Has it helped with the fatigue?

Amarjid: It gives me more energy and reduces the muscle pain

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

Amarjid: Here It's imperative the GP. He has been describing it me. I only have guidance until next year. I don't know how to do after that.

Linda Elsegood: I might be able to help you with that. I'll tell you details at the end, and I'll send you what you need to do. What would you say to other people who are thinking of trying LDN for EME/CFS?

Amarjid: It doesn't help very much but it helped me 10%.

Linda Elsegood: When you first started, did you have to start on an Ultra-Low Dose and work your way up?

Amarjid: Yes.

Linda Elsegood: And did you notice any side effects?

Amarjid: No. Because it was a small dose. I started in 1 mg and then every month I up to and then 3 mgs 2 mgs two, and now 3,5 mg.

Linda Elsegood: Good. And how long have you been taking LDN?

Amarjid: I think two years now.

Linda Elsegood: Right. Well, that's good. Well, I hope LDN continues working for you, even if it hasn't been that spectacular. 10% is certainly better than where you were before, wasn't it?

Amarjid: Yes, indeed. Thank you very much for sharing your story with us.

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

Linda: I'd like to introduce Alan from Scotland, and Alan has multiple sclerosis. Welcome, Alan. I wonder, could you tell me when you first started having symptoms of MS. 

Allan: Oh, that's a difficult one. I was diagnosed in 1986, but I probably had symptoms for at least ten years before that.

Linda: What symptoms did you have at that time? 

Allan: But it's the same. The symptoms bothered me the most. All my life is fatigue. I first started noticing. Terrible fatigue. I was driving. I had a job that required me driving from the North, of course, In those days I have to stop the car and go with sleep. It was just to get me together again and, uh, set off to the next customer. And I knew it wasn't right. It was not at fatigue. Other people didn't have that often. I went to the doctor but it was hard to describe it other than just feeling tired.

Linda: How old were you at the time? 

Allan: between 20 and 25.

Linda: so how did the impact on your social life?

Allan: It focused more on my business life, I suppose. Um, because. The problems were when I was driving and socially I didn't really notice it that I could drive above it. I can remember socializing. I can remember it being a problem in 1990. I mean as long diagnosed by them. But I went to the one world cup in 1990 it was to the other guy, and we all share the driving and, I couldn't take my turn drive, and I But um. I had to depend on others. I could drive for short distances and then I would, I would start to get tired and someone else that has to take over.

Linda: So what did you find, other than the fatigue, was that the only thing that bothered you at that time?

No, I, various sensory problems, tingling, pins and needles. Um, I can remember when I was driving, if I bend my neck, I would get a tingle go running Right from my back to my legs, to my toes. And it wasn't painful, And I would say myself do it just to, um, to see, to still real. 

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

Allan:  I did say I would never bring it up with someone that someone else brings it up. I would say, yeah, there's nothing to lose. It's still relatively inexpensive, and you could try it.  I don't feel there are no side effects of a thing. I did the very beginning. Your muscles, my life tightened up. Uh, I was the only one, two or three weeks. Yeah, two or three weeks. 

Linda Elsegood: Thank you for listening to this presentation. All past conference presentations can be found on our website, https://ldnresearchtrust.org/

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

Alice's fibromyalgia symptoms appeared in 2008 when she was diagnosed, but she first experienced back pain in 2005. Her pain level was often 10 and she was taking numerous analgesic drugs when a friend introduced her to low dose Naltrexone, saying it was life-changing. She began taking Low Dose Naltrexone (LDN) at the end of 2009. It made her drowsy, helped her sleep and after two months the pain had reduced to around level 5 and her nerve abrasions had cleared.

When she forgot to take it the pain increased. She also takes various herbs and antibiotics for lymes disease.

She recommends other fibromyalgia sufferers  try Low Dose Naltrexone (LDN) as it's harmless and produces no unwanted .side effects. She states that she couldn't live without it!

This is a summary. To listen to the whole LDN and fibromyalgia story please click the video link.

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.