LDN Video Interviews and Presentations

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

Linda Elsegood: I'd like to introduce a bill from the United States who takes LDN for multiple sclerosis. Good morning, bill. 

Bill: Good morning. 

Linda Elsegood: Really nice to talk to you again. And I'd also like to take this opportunity of saying thank you for being such a great advocate of LDN and for the fundraising that you do it is appreciated.

Bill: Thank you and you do a lot more than anybody else that I know of. 

Linda Elsegood: Thank you, now you have got multiple sclerosis. When did you first start to notice symptoms? 

Bill: Well, I had some symptoms probably as far back as the light seventies but they didn't stay with me long enough to really worry about it.

I lead a pretty active life, so I figured it was something that I probably overdone or something like that. But finally, in 1998. My whole left side went numb, and it wouldn't wake back up, that's when I really felt like I had a major problem, and when I started looking into what might be wrong.

Linda Elsegood: And how old were you then, bill?

Bill: I was 49 years old. And to put it bluntly, when I was diagnosed with MS, I was absolutely shocked because I have a sister that also had MS and I'd always been told it was not hereditary and two people in the same family can get it,, that was all wrong.

Linda Elsegood: how did having MS impact on your life bill? 

Bill: Well. As a full time paid firefighter, it impacted my life immediately in that I could no longer do that. Once I was diagnosed with MS, I had to come off the fire line, so I had to make arrangements to try to do some more training or something in order to stay with the fire service.

So I had to go back to school and become certified as a Fire Marshall. 

Bill: And at the same time, try to figure out how to deal with MS, it was very traumatic. Once I was diagnosed, the symptoms started to happen and I progressed very rapidly. Fortunately I had very good insurance, so I was able to do a lot of things that some people might not be able to do.

But to make a long story short, I went through every treatment, every approved treatment that you could take for MS and a number of treatments that weren't approved for MS. But everything I've tried seems to speed up the progression of the MS, or has it slow it down?

And so from 1998 to 2002 I went from a relapsing-remitting MS to secondary progressive MS. And by 2002 I was completely wheelchair-bound on oxygen, 24 hours a day. Catheterized, I had to wear a bib to eat, and I was given in 2005  14 months to live, and I've been on everything from chemotherapy to all the ABC drugs to plasma exchange, and it was about that time that I read about LDN. I started looking into it, and I found Dr Gluck, and I called him, we talked for maybe four hours and, oh, what a special man. I got all the information I needed and went back to my neurologist and he would not even consider prescribing it for me.

So I went to another neurologist, and she actually wanted me to go back on chemotherapy, and I told her I would, but that I've already been on it and I almost died from it. So I would like to try LDN before I did that, and she said, well, I've never prescribed it before, and it's not approved. And I thought, here we go.

But then she said, but since you've already been on everything, I'm going to prescribe it for you. But you've got to agree that if after three or four months you haven't seen any positive results, you'll go back on the chemotherapy,  I said I agree 100% 

so I started at 1.5 milligrams in July and in October, I went back to my neurologist, and I walked into her office with no assistance. I had no braces on my legs, and I had not had a problem with my MS in the whole three months. It just blew her away, she called all her nurses, and everybody was chattering. I said let me go back a little bit too before I started the LDN, I was having an episode with my MS every month and would lose more abilities. 

Once I started taking the LDN, I went over five years without having any episodes whatsoever. I've had three minor episodes since 2005, nothing that slows me down from doing what I wanted to.

Uh, it's just been absolutely incredible. My pharmacy bill went from just under $3,000 a month to less than $50 a month. And, I actually, the full price for LDN here in my hometown without insurance was $36 a month. And my insurance actually pays for all of it, but $6. The rest of the pharmacy bill is mostly vitamins.

I did have some problems with my kidneys and bladder because of chemotherapy. So I do have to take some medication for that, and I have to take them for the rest of my life. But that was not for MS. it was for the damage caused by chemotherapy. 

Linda Elsegood: You said that you were characterized, were you able to have that removed?

Bill: I don't have to have that anymore. I have kept the oxygen, apparatus and stuff at home just in case as I didn't want to have to buy it, if the time should arrive, and I needed it again, but I haven't had to use anything since I started taking the LDN.

Linda Elsegood: Do you have any symptoms at all now?

Bill: I do have a few symptoms. I have some tingling. Uh, I do have to be careful about overdue things. Uh, I actually run a community garden here now, I have a five and a half-acre garden, and we grow everything, and we give it all away. Well, naturally, a garden is a pretty physical operation.

Bill: I have to be really careful. I have overdone myself a few times,  I'll be the first say LDN is not a cure, but it has allowed me to do so many things that I thought I'd never be able to do again. And I'm kind of like you, I look at every day as a gift and an opportunity to do something for somebody else.

And so. That's why I run this garden. I do a lot of volunteer work here in my hometown. I'm on a lot of boards and stuff. In fact, I just got back from Florida. I'm on the board of directors for our local housing authority, and I had to go to a five-day conference down later. Well, with MS, you can imagine the stress and stuff that was put on you if you were really suffering from MS, and I had no problems while I was there. 

Linda Elsegood: Fantastic. It's just such an incredibly inspirational story for other people to go from somebody who was so very, very sick to be able to lead a normal life. I know you still have boundaries that you can’t cross, but it seems as though you're able to carry on with your life, providing your care.

Bill: Well, I do. And, and I'll tell ya, I'm a lot more open with people now than I was, 20 years ago I was kind of a shy person. Now if I see any person that's having problems walking or has a problem with anything, I'm the first one to go up and say look. I'm not trying to be too personal, but let me tell you my story, and I tell him about me, and then I ask them about themselves and, and if it's something that is wrong with them that I think LDN we will help with that. I jumped right into it, it's good that I've been able to at least introduce people to it, I don't push it on anybody. I'll just introduce them to it and say, look, here's the information and give me your email address and I'll send you websites and stuff, and you can look at it and decide for yourselves. And I do know that my neurologist now prescribed it for over a hundred people, a compounding pharmacy here in my town.

Which is a small town? We have about 12,000 people here and about 70 people, get their prescription filled at our local pharmacy. They had actually never heard of naltrexone before. I asked them for it, and they actually had to call Skips in Florida to find out about it and now they have like 60 or more people.

Linda Elsegood: So what does your neurologist actually say about your health now? 

Bill: Uh, she said it's amazing and, and one of the things that I think that is a big plus, I give her name and telephone number to people from all over the world,if their neurologists have a problem with it or don't know anything about it, they can call her and ask her and the very first thing she's going to tell. Any medical person is that LDN will do no harm. Yeah. And that is such a big deal. I've had doctors say, well, it's an opiate, you don't need to be taking it, well, it's not an opiate, it's actually an opiate blocker.

Bill: But the biggest thing doctors need to know is that it will do no harm. But chemotherapy I took was not approved for MS, and I almost died from it. And they were ready to prescribed that. And I thought, well, why won't you prescribe LDN? Because they're all no side effects to it, I mean, not any major ones. And you know, the only one I really know of is dreams. I kind of enjoyed the dream. 

Linda Elsegood: I didn't have any side effects whatsoever. 

Bill: I've had absolutely no side effects from, LDN. In fact, I was looking forward to the vivid dreams because at the time I started taking it, I was getting less than an hour sleep per night and if I had vivid dreams, that meant I was sleeping. And that was really one of the reasons they said I only had 14 months to live. I had a kind of sleep apnea. The Mayo Clinic told me that they had only seen two other cases like mine and both those should already be dead.

Uh, when one hour in 24 hours, I mean. I've never slept for more than five minutes at a time, and then I would go two and three days with no sleep, and my kidneys would shut down. My heart would start acting up. I couldn't swallow. Uh, there were just so many frightening things, and the breathing got to be a severe problem, and there's nothing more frightening than not being able to breathe.

I mean, it is scary, but once I started taking the LDN, for whatever reason, that just kind of went away. And I've really had no problem with the sleep apnea, I've had no problems with breathing. 

Linda Elsegood: How long would you say, bill it took before you noticed any improvements. 

Bill: I was completely wheelchair-bound when I started taking the LDN. Well, our bathrooms were not handicap accessible, so I would have to go in my chair to the bathroom door, and I had a wall bar inside the door and I would transfer from the chair to the bar and slide over to either the toilet or the tub or the sink.

Well, as I got into trying the LDN, I started noticing a little bit more strength in my legs and in my hands. And rather than having to sit on the bar and shuffle my feet. I could take a few steps, and I actually have a, have a bench that straddles the bathtub, and I would sit down on the bench and slide over into the tub I didn't have to do that anymore, I could step over. I had to hold on, of course, but I could step over into the tub. And so all of those things were definitely improvements. And then I was able to take the chair to the door and, and do everything I needed to do in the bathroom without the bar.

And then I got to where I was doing a little bit of walking in the hallways and stuff and just a little bit more, a little bit more. I was really fortunate we have a pool, and so I could do a lot of stuff in the pool, but I couldn't necessarily do outside the pool. So then I was walking, and I got my cane back out and got to put the wheelchair up, and then by the time the three months I had to put it up, and this was leaning up against the wall.

Linda Elsegood: Thank you very much for sharing your story with us. I really appreciate it. 

Bill: I look forward to telling it to anybody that'll listen.

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

Linda Elsegood: I'd like to introduce Bill from Ireland who has multiple sclerosis. Welcome, Bill could you tell me when you first started noticing your MS symptoms? 

Bill: Well, going a way back, I had optic neuritis in my eye, that was when I was a student, uh, in the early seventies, but those days, the diagnosis wasn't so easy. But then it was in 1990 when I have a final diagnosis of MS remitting and relapsing. 

Linda Elsegood: Yes. What were your symptoms at that time? 

Bill: At that time severe fatigue, weakness and slight slurring of speech, which my speech still isn't perfect. It's still a bit affected.

Linda Elsegood: And how did that affect you being diagnosed, having that MS label? Bill: Well, I knew all along in a way because I mean, the indication from the early days was I had MS so the confirmation in 1990 didn't really affect me too much, but I was really conscious of the fatigue, especially, it was getting worse and worse, and impacting on my job, I was very concerned as to how long I would be able to continue.

Linda Elsegood: How did you learn about LDN?

Bill: Well, I was attending a national health consultant and my GP for years, I'm sure they were tired of hearing me complain about fatigue and asking what might be done about it or that could anything be prescribed.  I was getting no real assistance and I decided, really out of exasperation, to make a private appointment with another consultant. He was much easier to talk to, obviously more time to talk to me because it was a private appointment, and it was he who said, after we had chatted for a while, it was he who said, Oh, I thought maybe you were here looking for LDN as I stared back at him a minute in amazement because I've never heard of LDN. I asked him more about it, and he said, well, this, this has worked for some people. Um, coincidentally, a good friend of mine, just at the same time, asked me about, had I come across LDN, the trend is a retired vet and it was actually his GP who's mentioned, I think a sister-in-law has MS and the friends GP who mentioned LDN was prescribing it to some of his MS patients. So, naturally, I, when I returned home from the consultant, I got on the computer and found out a lot more about LDN. 

Linda Elsegood: So when did you start LDN?  

Bill: I started at the beginning of December last year. 

Linda Elsegood:  Did you notice any initial side effects? 

Bill: Yes.  I was waking up, to some extent still am, having taken the LDN at 10:00 PM, I was waking up at 3:00 AM roughly. I would stay awake for an hour or so and then get back to sleep. But for me, that was a small price to pay, because the very day after I took the first tablets of LDN, and I know this sounds a bit extreme but the very day after I first took LDN the severe fatigue that I was feeling every morning when I woke up was no longer there.  I still had a certain amount of tiredness, but it's not the fatigue that I've been having for years. 

Linda Elsegood: That's good. 

Bill: I was really astonished to be quite honest with you.

Linda Elsegood: So what impact would you say LDN has had on your life overall? 

Bill: Well,  it's given me my life back. I'm able to do things that I’d long since ceased doing, yeah, I appreciate the MS I had on it and still have, it's at the lower end of the scale, but it was preventing me from going out in the evenings.  I was relying entirely on my wife to do everything around the house and then the garden. It's made a huge difference to me. 

Linda Elsegood: What would you say to other people with MS that are thinking of trying LDN?

Bill: Well, I would say, what have you to lose. You're probably not getting anything that's really, in the way of medication that’s life-changing. If you try LDN, my understanding is that the side effects are minor. They certainly were in my case, my understanding is no suggestion of serious side effects, what have you to lose. And I couldn't endorse it strongly enough.

Linda Elsegood: Well, that's wonderful. Before we finish, is there anything else you'd like to add? 

Bill: No, I think that's, well. I would just say that when I first learned of LDN, I was astonished, and I continue to be astonished at the lack of information that is available. to, not just MS patients, but doctors.

My own GP had never heard of it and was very sceptical initially, but was won over reasonably quickly. Perhaps the consultant, perhaps he had a  word with the consultant, I don't know, but it really astounded me. And naturally, I've spoken to two friends who have MS and some of those I know are taking up LDN.

One friend in particular who unfortunately is in a wheelchair rang me recently and said he had only been on LDN for a week. Perhaps hadn't been any great changes, but his wife had remarked that he seemed a great deal sharper and he couldn't be more grateful to me for mentioning it. It just seems an absolute disgrace that this reasonably inexpensive drug is not being made more widely available.

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

I really do appreciate it. 

Bill: You're very welcome. 

Becca - England: Crohn's Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I would like to introduce Becca from England who takes LDN for Crohn's disease.

Thank you for joining me, Becca.

Becca: Hello Linda.

Linda Elsegood:  Could you tell us a bit about your experience? What led to your diagnosis?

Becca: Five years ago I was bedbound with chronic diarrhoea, couldn't keep any food down. It went on for about six weeks before I was finally admitted into a  MI and I was in the hospital for over a month, and they diagnosed Crohn's disease.

Linda Elsegood: Were you bleeding at that time?

Becca: Yes, absolutely. I was losing a lot of blood and mucus. Not a normal bowel movement at all.

Linda Elsegood: So did you become anaemic?

Becca: Yes, I did. I lost five stone in weight. Couldn't keep any food down at all.

So by the time I was admitted to my organs started to fail and my family were told to prepare for the worst.

Linda Elsegood: Oh goodness. How old were you even then?

Becca:  I'm in my late thirties, and I had two young children at home.

Linda Elsegood: Oh, that must've been devastating. Absolutely devastating.  What happens then?

Becca: After some intravenous steroids and lots of different treatments I was sent home after six weeks with lots of different medications. I was on 20 different medications a day. But nothing really seemed to have to work, and nothing was really settling it down.  I think to be in a continual flare-up of the Crohn's for over six months.

So during that time, I couldn't leave the house. I was completely incontinent. I was terrified to even go into the garden in case I have an accident. I wouldn't really leave anywhere unless I had a toilet right next to me. It was a very scary time.

Linda Elsegood: Were you able to sleep?

Becca: My normal day's bowel movements were about 20 a day so I'd be up to five, six times in the night to sit in on the toilet sometimes for up to an hour. I can joke about it now. My husband would say to me: "I'm just going to move you into the toilet." to stop disturbing his sleep. It was a pretty difficult time.

Linda Elsegood: I can imagine. And how did your children cope with that?

Becca: I couldn't take them to school anymore, so they were finding it really hard. And they will be in total don't stress mummy hell because she is got this bowel disease. They found it really hard. I wasn't really a hands-on mama in that period.

I had to really take a back seat.

Linda Elsegood: How old were they?

My youngest daughter was eight at the time, and my oldest daughter had just started secondary school. So it was a bit of a crucial time for her. And I just wasn't there for her at that time. I couldn't be.

Linda Elsegood: What led you to find LDN? How did you hear about LDN?

Becca: I heard about LDN from a friend who has Ms. She read a little bit on the website about other illnesses that LDN could help. She'd had a lot of success with LDN. I didn't really take her word for it. I just thought: " It's another miracle cure, and nothing's going to really help me."

It wasn't till about six months later that I actually did my own research into it. Did take me a while to come around to the idea of something would again help me. I just didn't think it would.

Linda Elsegood: Did your own GP prescribed it for you or did you have to get it privately?

Becca:  My own GP was quite happy for me to take it but didn't know anything about it.

So they didn't want to prescribe it. I wrote various letters and sent things that sent through the LDN research to my own consultant at the Royal Boucher hospital and he said, he was happy to do more research, but it would take him up to a year. So I knew I didn't have that long to wait because my life was pretty much impossible. So I did a private prescription via clinical on private.

Linda Elsegood: What were your experiences? Did you notice any initials side effects?

Becca: Yes, when I first started taking it symptoms were a little bit worse for a couple of weeks, and then they became a lot better. As I increased the dose, every time I would have a couple of days of discomfort, but then again, the benefits would kick in then after a few days. So now up to 4.5 mg. I take it every day and there are no side effects at all now when I increase.

Linda Elsegood: How are you feeling now? I mean, how often are you happy to go to the toilet?

Linda Elsegood: About twice a day, which is pretty much a miracle.

I have no inflammation. I have no blood. I lead a normal life. I don't have to wear nappies or incontinence pads. I've been abroad since I've been taken LDN, which was something I could never even consider before and I've actually had another child. I've got a two-year-old son and a perfectly normal pregnancy all the way through. And I really do think that's all down to LDN. Because I wouldn't have been able to even live a normal life or even think about having a relationship with my husband. And now I'm a normal mum, and I go swimming with my son and, do the school runs and just work as well. So it's been a real transformation.

Linda Elsegood: When did you start the LDN? Was it before you got pregnant with your youngest child?

Becca: Yes. I've been taking the LDN for a little while now. So when symptoms settled, and I felt WEDI, then we considered having a baby. I've had no problems taking LDN through pregnancy and just had no problems since cyber.

My consultant is pretty impressed. Colonoscopy showed that I have no inflammation at all and he was astounded. So he's now decided that he's going to prescribe LDN to others with similar symptoms. I think it's fabulous because he's quite a well-known guy in the crimes world in this area.

 I'm really, really impressed that I managed to sway him.

Linda Elsegood: And what does your GP think?

Becca: GP is just absolutely delighted with it. As I said, when I first came out of the hospital, I was taking 22 tablets a day and now down to four, which is fabulous. So  I've slowly tailed off all my medication apart from the four essentials and just take these four and my LDN every day. And that's it.

Linda Elsegood: And your husband's got his wife back and your children.

Becca: Yes, I've got my life back as well which is so important.

Linda Elsegood: What a success story! That is absolutely amazing! So what would you say to other people with Crohn's who are contemplating trying LDN but are a bit scared?

Becca: I would say, don't hesitate. You're already suffering. You've already got all the problems. Your symptoms might flare a little bit initially for the first two days. When I was at my worst I was in a wheelchair for about six weeks. I had a blue badge because obviously I was too weak to walk anywhere. And the steroids that I have on affected my bones which meant I had so much weakness, I could hardly even wash myself. And my husband had to bath me on a daily basis. So I was pretty much totally disabled for a short time and really opened your eyes to how much you take for granted when you're like that.

Linda Elsegood: And how close were you to having surgery?

Linda Elsegood: I was told that I needed a colostomy bag urgently and if I refuse, I was at risk of my bowel bursting and actual death. But when I spoke to the colostomy nurse, and I had my markings for surgery, something in me just said, "No, actually this isn't for me."

I just need to see if I can manage this on my own. There must be some other way. So I pulled out an hour before surgery and said, "No, I'm changing my mind." And that was the best decision I ever made.

 

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.

Barbara (2) - US: Fibromyalgia, Sjogren's Syndrome Arthritis, Hypothyroidism (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Barbara from the United States shares her Sjögren's Syndrome and LDN story on the LDN Radio Show with Linda Elsegood.

Barbara suddenly noticed something was wrong with her health when she began to experience sudden pain without an apparent cause. The pain eventually intensified until the point where it hurt to lift her foot onto the sidewalk to avoid the curb.

After the pain naturally died down, it returned a few years later which is when Barbara was then diagnosed with Sjögren's Syndrome. Upon hearing about Low Dose Naltrexone (LDN) through her cousin, she decided she must try it.

Barbara is now able to enjoy time with her family without any serious pain and do the simple things like climbing the stairs without any stiffness in her legs.

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

Barbara - US: Polymyalgia Rheumatica (PMR) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Barbara from the United States shares her Polymyalgia Rheumatica and LDN story on the LDN Radio Show with Linda Elsegood.

Barbara began to notice symptoms of arthritis around late 2013 shortly after participating in the jury of a murder trial. The stress from the trial certainly took its toll, leaving her with a stiff neck, hips, shoulders and muscle pains.

Having refused conventional treatment, Barbara was determined to find another solution which is how she came across Low Dose Naltrexone (LDN). Within a week of starting on LDN, her pain had begun to decrease and she was able to walk the dog again and complete other simple activities without the usual pain.

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

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

Linda Elsegood: I'd like to introduce Barbara from Germany, and Barbara has multiple sclerosis. Welcome, Barbara.

Barbara:  Hi, Ninja. 

Linda Elsegood: When were you diagnosed, Barbara?

Barbara: I was diagnosed in 2007. Okay. 

Linda Elsegood: And how old were you at the time? 

Barbara: I was 45 just when I was diagnosed, um, which came exactly two days after I tuned. 45.

Linda Elsegood: What were your symptoms at that time? 

Barbara: At the time, I had very few symptoms I was living in Australia at the time, and I'd been out on a Bushwalk with a group, um, and we'd after we'd been walking, or I'd been walking for, I don't know, three-quarters of an hour, so my legs sort of started to give I couldn't carry on walking. It was very, very strange and I just had to stop the walk. Luckily, we didn’t walk in the Bush. We were just walking along the beach, and there was a road run in parallel to where they were walking. So, um, somebody came with me, and we just walked very slowly, sort of onto the road and waited there, sitting on a bench, and then eventually somebody else from the group came to the car. Um, so it was very lucky, you know, the circumstances. Um, because I could have been out with that group in the Bush, and it would have been very, very difficult to get me back.

After I'd been sitting with the person for a while I started to feel fine again, and then I had a lift back into town and then took the bus back to where I was living, I only remember getting off the bus feeling perfectly fine and walking home without any problems.

But obviously this kind of incident kind of shook me up a bit. And I went to see my doctor, my GP and told her about it and she said, well, I really don't know what this could be, but I'm going to take it seriously and I'm going to refer you to a neurologist. And that's what she did.

I went to see the neurologist and described what had happened to me, and she said I'm going to send you for an MRI, which she did, and I have the MRI. When she had the films back, she said this is what I thought, you prove she came, but I wanted to make sure before I said anything to you. You've got multiple sclerosis, and at the time she said it was relapsing-remitting. And now last year. Summer. Um, I had a major episode and I, after I'd been in hospital and had the steroids, um, I went into a clinic for them as sort of rehabilitation places, um, brought about five weeks and the doctors there said he was, um, secondary progressive and I mean, I now have symptoms all the time.

You know, I mean, until, when was it, 2009 I had very few symptoms. Then, you know, I had problems and, um, I couldn't run. I mean that I noticed that even before you have this sort of incident on the walk that I couldn't run, I tried to run and I couldn't do it.

Linda Elsegood: The doctor said that you were secondary progressive, what were the symptoms then?

Oh, this was last year, you mean? Well, I sort of, now when I go out, I have to really use a stick most of the time because my balance has been affected really quite badly and I can't walk I mean, it depends, you know, it’s different from day to day, some days are better than others, and I'm sure everybody who has MS experiences that, um, some days I find it really difficult to walk more than 10 minutes at a time.

Um, and I also feel very stiff after I've been sitting down for a while you know, so you have been sitting at a desk for quite a while working and then I have to get up, to go to the toilet. Um, I do find the kind of, really difficult it takes me a little while to get going, but then I'm okay.

That is just the sort of initial other symptoms like fatigue and bowel and bladder and sleep. Obviously, I'm tired at the end of the day, but because I do things all day and I mean, you know, I don't think I'm, I'm usually tired.

So that's, that's not an issue. Um, my balance really isn't very good.

Linda Elsegood: What about cognitive problems? 

Barbara: I don't have cognitive problems. I, that, I mean, in this clinic they did do ten cognitive tests, and I was fine. I mean, it was well within the range of, uh, you know, um, healthy person and, um, those, that there's no problem there. Um, and I had to come in early enough. I had an appointment with my new biologist on Monday, and he did this, um, kind of things. Okay. Whereas, you know, for example, he has a tune in for, can you put different places, you know, on the arm and on the, on the ankle and stuff.

And I remember when you did it last time, I hardly had any agree with anything in my uncle. Um, and to, and on Monday I could kind of feel a little bit, and he sort of. Said afterwards, well, they sued me in the pool in an improvement there that you use, sort of seem to be able to feel the little vibration bit better.

I go and have a monthly  B12 injection there. And he said, well, he's determined B, I mean, not sure. You said that there is an improvement. They use the test by hand, you know, when you have to tune your race and stuff like that. And he said, well, your hands are really very good.

I mean, I, in the summer when I have this major episode, my left hand was sort of paralysed and I my index finger was sort of permanently bent it was sort of like crooked. It was horrible, and I couldn't eat with that hand, and that is all gone now. Luckily that is all gone back to normal.

So my hands are fine. So that is a great relief, obviously. 

Linda Elsegood: So when did you discover LDN? 

Barbara: LDN? I was diagnosed in 2007 when the neurologist diagnose me, want you to put me on to some drugs right away, you know? And I sort of said, you know, I don't, I want to explore some other things.

And then I've found the Best diets. And I spoke to Andrew a few times as well, and then I researched that, and then I found the resource centre. I mean, the website, you know, I'm talking about, and I went on the website, and I think I read about LDN there. I mentioned it to my GP at the time, and she was originally from Yugoslavia.

And she said I've used in Yugoslavia to treat, um, alcoholics. Um, and I didn't really realize it could be, you know, used as a treatment for MS. And she was quite supportive. And she said, you know, if you want to get it a try, I'll support you in that. Um, and when I mentioned it to my urologist.

I changed neurologists because the woman I originally see retired for health reasons, and I went to see another neurologist, and I asked him what he thought of LDN or whether, you know, of it, he said no, he didn't think there was anything to be gained by that. I didn't pursue it in the end, because at the time I had so few symptoms, you know, and  I kept to the diet. I didn't really need to do anything else. 

I started LDN at the end of November of last year. 

Linda Elsegood: Right. And did that do anything immediately for you? 

Barbara: Yes. Well, it was more or less immediately.

That's still going on. Now. I sleep really, really well. That's mean fantastic. I mean, I didn't really have any problem I was, you know, sort of suffering from insomnia and new things like that. But I have noticed that I go to sleep really quickly. I sometimes used to have problems going to sleep, you know But I go to sleep really quickly now and. Sometimes I don't even have to get up for the toilet in the night at all. Um, some now I, um, I do have to get up once to go to the toilet. Then like last night I did, but I then go back to sleep more or less straight away, you know, so fine. Um, I’m kind of had very happy.

Sometimes the backs of the back of my leg, it was sort of like, muscles, you know, like when you've been hiking a lot. Yeah. Would the next day your legs to the field a bit strange and you want to sort of have these pains, and it was like that. The pain was like that, and that has more or less gone.

Since I've started taking LDN, I do sometimes have them still these pain you know, my muscles, but I'm not anywhere near as often as I used to have them. So those are, I would say, the most obvious improvement. I also. Find that when I do things like cleaning, which I find sort of physically quite strenuous, I do a lot of walking.

I do recover more quickly. I do have to still sit down, you know, take a rest, kind of have a bath. I do think that it's quicker and better. Like last week I did some cleaning, and then I did sort of sit down for a while we did something else, but then I went for sort of 20-minute walk that park and then walked back for 20 minutes.

And it was, I mean, I wouldn't say it was difficult, but you know, I instead of wasn't, I did feel my legs, but I, I was able to do it, you know. 

Linda Elsegood: So your doctor prescribed the LDN for you, is that right? 

Barbara: No, no, no, no, no. I know. I told my doctor LDN. Um, I mean, here in, Germany, it's not really well known.

Um, I said to him, I told him about it, and I gave him all information I downloaded all the stuff from me and MS. For him and gave it to him, and he'd read through it. And then next time I went to see him, he said, well, would you like to do that? And I said, well, yes. And he said, okay, well let's, you know, the only thing is I'm not quite sure how you'd be able to get it.

And I'd try to get it. There's an international pharmacy here, and they said they weren't able to get it they have never heard of it either. I mean, they should know what I'm talking about. Anyway, I called Dickson pharmacy in Glasgow, and they were very helpful. Very nice. Um. And Paula said you have to get a UK prescription for him to send you that.

You get via email, and that's what I did, and it was really easy. I was surprised at the end. Once I got onto it, you know how quick, how easy it was. I filled in the form on the web, and I sent them a letter. And just within a couple of days, they sent the prescription to him, Glasgow, and then the book in a few days.

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

Barbara: No. No. The only thing is as happened of time. I did have vivid dreams back then. I mean, they were not nightmares or anything like that, but that happened to a couple of times in the beginning.

But I mean, I wouldn't really call that a side effect, you know what I mean? Yeah. It may have happened even if I hadn't been taken LDN, you know, you have no, no, no. 

Linda Elsegood: So how would you say your life has been since you started LDN? 

Barbara: Um. I think it has improved in, as I said, no, I sleep better, and that makes such a difference, I think to anybody.

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

Barbara, from England was diagnosed with Chronic Fatigue Syndrome (CFS) after experiencing symptoms eleven years ago. She started undergoing exhaustion, confusion, memory loss and constant discomfort in her legs. And after a cold/flu, Barbara never really fully recovered. After seeing a GP, it was put down to menopause. 

Barbara stumbled upon LDN a few months ago whilst searching the internet for medication for CFS. After printing off all the details regarding LDN, she went to see if her GP would prescribe it. She was told no, due to government guidelines. So after getting in contact with Linda, she was given LDN. 

Upon initially taking the medication, Barbara experienced strange dreams as the only side effect. These dreams only lasted two weeks. Barbara has noticed improvements in her energy reserves and other symptoms.

When asked what she would say to those contemplating trying LDN, Barbara urges people to go for it and reiterated the fact that “it does not seem to be anything but benefits.”

This is a summary of the entire interview, click the link to watch the video.

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

Barb from the United States shares her RSD and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Barb suffers from Reflex Sympathetic Dystrophy (RSD) which impacts upon the nervous system. This was exacerbated following foot surgery she had in 2003, leaving both of her feet in severe pain and discomfort.

She was initially put onto a Ketamine treatment which had mixed results, but upon finding Low Dose Naltrexone (LDN) her recovery skyrocketed. She is now back to working 30 hours a week on her feet. Having recovered miraculously herself, Barb now tried to help others diagnosed with RSD by promoting alternative treatments such as LDN.

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

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

Austin from England shares his Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story on the LDN Radio Show with Linda Elsegood.

Austin first started to notice symptoms of Multiple Sclerosis (MS) around ten years ago, suffering from intense brain fog which limited his ability to read and write. His vision was also impaired, as well as his constant fatigue and bladder issues.

After Austin obtained his Low Dose Naltrexone (LDN) prescription, his life drastically improved.

“The very first thing I noticed was that I had more energy, which was major. I no longer have frequent muscle spasms. My overall quality of life is definitely higher than before.”

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

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

Linda Elsegood: I'd like to introduce Audrey from England who has multiple sclerosis. Welcome. Audrey, could you tell us how old you were when you were diagnosed with MS. 

Audrey: I was 12 years old when I was, no, we're not. Not when I was diagnosed at 28, but I was 12 when I first started getting symptoms of MS.

Linda Elsegood: Right. Okay. And what was your life like if you were having symptoms from the age of 12, you know, what were you experiencing? 

Audrey: Um, well, when I was 12, I had, um, diplopia, um, and, uh. Then throughout my teens, I remember I had like burning down my legs. Then I, when I was 20, I went for my first lumbar puncture and MRI scans and, um, yeah, I, I, that was such a long time ago.

I can't remember. I remember, um, I was having numbness in my hands, which is quite bad. I couldn't use my hand, my right hand. Um, and I was an artist. I couldn't draw. And then throughout my twenties, where was, um, basically I was, I would pull myself and retest, although my neurologist says I was benign.

And, uh, um, but yeah, I, I just have eye problems and like my side lesson diplopia and numbness down my legs and all my body and problems with my hands and stuff. Um, and immediately before I started the LDN, I had five relapses in a row. Um, and I ended up losing my job as a result of it. And, uh, I was only sent for diagnosis because I ended up in tears in front of my doctor.

And, and I had. Tried once before to get diagnosed, but, uh, no. 

Linda Elsegood: You said that you had five relapses, um, yeah. What period of time that was over? 

Audrey: Um, I don't know. Usually a relapse per month. 

Linda Elsegood: Really? 

Audrey: Yeah. 

Linda Elsegood: And did you find that with each relapse you were going further downhill? 

Audrey: Yeah, I actually, I would have thought, I remember thinking at the time that I was moving into a secondary progressive, and that was scary.

I noticed I was driving like a drunk sort of swerving and stalling and cars picking at me and I received a speeding ticket. And, um, yeah. 

Linda Elsegood: How did you learn about LDN? 

Audrey: Um. Yeah, I was living in America at the time, and I just found it over the internet and some LDN forum that, I'm not sure what it's called, but I only, www.lowdosenaltrexone.org probably. Yes. That was a very helpful one. And, uh, yeah, I thought it was quite informative, and I decided before I moved back to the UK, I knew I was going to try and get hold of it. And by the time I moved back to the UK, things were starting to move on, and I found you. 

Linda Elsegood: Good. And did you find getting a prescription easy? Would your GP prescribe it for you? 

Audrey: Um, when I went to a private GP on Holly Street first to get it prescribed. Then then, because it made such a massive improvement in my health, I then went to my GP, and she said, wow, you look fantastic. Of course, I'll prescribe it for you. So that was, and I'd been turned down by another male GPS, um, when I'd ask for it to be prescribed before. And they said no outright no. And my neurologist said no. 

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

Audrey: I’ve been taking it four years now. 

Linda Elsegood: Then how would you say, how have you worked? Do you say it's helped with your MS? 

Audrey: Um, it helped me with symptoms. Um, I sleep a lot better. Um, my energy is a lot better. My blood is better. I haven't had any eye problems and, uh, yeah. 

Linda Elsegood: What about relapses? 

Audrey: Um, I wouldn't, I don't know if I'd call them full-blown. Relapse is more sort of exacerbation kind of. I've had some symptoms, uh, nothing major, even, you know, if I eat the wrong thing and me, it’s been difficult. And then really candidly, I try to be careful most of the time, but now and then I will have something I shouldn't have.

Linda Elsegood: Um, and so for the results, you know, did you have any side effects, initial side effects when you started LDN? 

Audrey: Um, I had quite, um, yeah, I started to have a dream that I would call them nightmares actually, but they were controllable cause you just avoid taking the LDN. Um, I quite enjoy it. I do, I do take the LDN before I get there, maybe half an hour before I go to bed, but sometimes I forget to take it at bedtime, and it might not have the vivid dreams and before the sleep that I don't mind having nightmares.

I quite enjoy it because it doesn't happen that often. 

Linda Elsegood: Hmm. So what do you continue taking? LDN? 

Audrey: Um, definitely I can see myself taking it, you know. 

Linda Elsegood: Have you ever taken a break? 

Audrey: Uh, um, yes, our house at Christmas time and we had the snow problems and probably the Royal mail. I didn't take it for five days. I think that's the longest I haven't taken it for, but sometimes I'm out, but the chemist can get it to me quickly. I might miss a day or two, but it's not a problem or so. 

Linda Elsegood: What, what did you find with missing it for five days? Did you notice anything? 

Audrey: I didn't notice anything. No, I didn't. No, I didn't see anything. 

Linda Elsegood: What would you like to say to other people that are considering trying LDN? 

Audrey: Um, I'll say, go for it. You've got nothing to do at all. Just give it a go. Cause I know, um, the, the good results I had were within the first week, and it made me feel fantastic. I remember. I remember dancing to the radio. I could, I felt that good, you know, and I had an appointment with my, um, an F nurse, and I remember walking to the hospital, which I couldn't have done before. I walked from the base about a mile to the hospital, and that was, that was the start of my progress. 

Linda Elsegood: Brilliant. Fantastic. And I understand, you have a dog you take for walks as well. 

Audrey: I, I, um, yes. I've had. I got Lucy. I think it was before I started. Yeah. I've had her for four years now, so I got her before I started the LDN. So she, I called her my gift from God because she's just been so good for me. So I walked her a lot. Yes. That's a definite. There'd have been times where either I maybe not had that much energy, I have to admit. But a majority of the times she gets many walks a day.

Um, if you have a dog, you don't have the chance to sit. You have to go out for a walk. Which, yeah. It's a good reason for making you do it, isn't it? So, yeah. That's very good. 

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

Audrey: Thank you, Linda. Thank you. Bye. Bye. Bye.

Any questions or comments you may have, email us at Contact@ldnresearchtrust.org.  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.