LDN Video Interviews and Presentations

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

Linda Elsegood: Today, my guest is April from the United States who takes LDN for multiple sclerosis. Thank you for joining us today, April. 

April: Thank you for giving me this opportunity. 

Linda Elsegood: So could you tell us about when you were diagnosed with MS? 

April: Sure. I was diagnosed late in life. I guess I was diagnosed at age 43 and really leading up to that diagnosis, I didn't have any significant health problems. I did suffer from infertility in my thirties, but thankfully I had children and they were ages five and eight when I was diagnosed.

Linda Elsegood: I'm just trying to piece together in my mind, you didn't suspect that you'd had anything wrong with you before you were diagnosed? Is that what you're saying? 

April:  Yeah. That came on very suddenly for me. I woke up one day, it was actually March of 2015 and I woke up one day with the entire right side of my body numb. I had a few symptoms about a week before where I had a little numbness on the top of my leg and I had some tingling in my legs and I had some swelling in my feet, which was odd to me. It happened very suddenly where I just woke up and was just completely numb head to toe on my right-hand side. At that point, my husband and I were obviously very frightened. So we went to the emergency room. They ran an abundance of tests where they ruled out a stroke. They ruled out other critical illnesses, but then they released me and they told me to follow up the next week with my general practitioner so that I could track down a diagnosis. From there, my general practitioner referred me to a neurologist who very quickly ordered an MRI and spinal tap. So with the results of these two tests, I was given the diagnosis of multiple sclerosis and it was about a week and a half from my emergency room visit. So I got that diagnosis very quickly. I do consider myself lucky in that regard because I do hear of so many people that struggle with symptoms for years and can never really nail it down. Certainly, I had an answer very quickly. So an autoimmune disease, multiple sclerosis was not new to me. My father also was diagnosed with multiple sclerosis. He too was later in life when he was diagnosed but he also lived with a lot of other health problems, so he would tell you for him that multiple sclerosis has been a pretty benign disease for him, whereas I didn't feel that at all. I felt like it hit me very suddenly and very hard. My neurologist noticed me, did go ahead and admit me to the hospital so that I could go through the steroid treatment.

So I was admitted and I went through three days of the steroid treatment and then I left the hospital and I planned to start a disease-modifying drug Plegridy. I had the expectation that I would be fine, that I would be on the mend and I would have no other problems after that. It didn't work that way, you know, I continued to decline.

Plegridy, I did not respond to at all. In fact, I went further downhill with that. So very quickly I actually switched neurologist and she wanted me to switch over to Tysabri. So once I got the approval from my insurance company, that's what I did. But I continued to go downhill, soon after starting Tysabri, I went completely numb.

So I say I was 95% numb head to toe on my left side, right side completely. I just was completely numb. I had trouble with my vision. I wasn't driving at the time. I was extremely fatigued. I couldn't work. I didn't really feel like I could take care of my family. I was in really rough shape.

I did feel like I hit rock bottom, which for me, I think was a blessing because it made me look for other avenues. So that's when I started doing a lot of research. I had a family friend who had great success using diet and lifestyle changes to control her MS. So again, once I hit rock bottom, I said, well, it won't hurt to try that.

So that's what I did. I radically changed my diet. I actually followed and still do to this day. I follow the protocol. Completely committed to it. I still am doing that today. It was at that time and really the only time since my diagnosis that I saw any improvement. It really happened overnight for me.

Within two weeks of starting, my numbness and neuropathy were almost gone. My eyesight was coming back to normal. I was back at work, I was taking care of my family. My fatigue was much better, and each day the great thing about it was each day I could see improvement. So I felt really good about that.

I did not want to continue with Tysabri. But I also did not feel confident. I did not feel that I could do just that and be okay. So I started researching other avenues. On Facebook. I kept seeing people refer to LDN and so I started researching now and they pointed me to the LDN Research Trust Facebook group.

I joined that and then I found the research trust website, which gave me a wealth of information. So again, I just started diving into the research on LDN and I thought, it's such a fascinating treatment option. It seemed to be much safer than what I was currently doing, which again, was still Sabri.

I really was interested in starting on LDN. I did read where people struggled to find a doctor to prescribe LDN. I was fortunate because my neurologist, when I asked her about it, even agreed to give me a prescription. So she wanted me to still stay on Sabri but she would go ahead and give me a prescription. So she gave me a prescription for three milligrams of LDN.  I started out with the goal that I would stop Tasabri at some point. Once I felt comfortable with that, if it was working, the LDN did work for me.

I started LDN on March of 2016 and that was almost exactly one year after my initial diagnosis. After the first dose, I was one of those folks that felt the change. Immediately I felt a lightened mood. I felt fatigued. I felt that my fatigue was reduced. I felt an improvement, but again, even more of an improvement once I started delving in as it pertains to the fatigue.

That felt amazing. I hear people talk about sleep disturbance I did face a little bit in the first few nights but that quickly went away. I also hear people talk about vivid dreams and really I never had that issue. I've never noticed any changes in my dreams taking LDN. Once I got past the first few nights, I didn’t have any sleep disturbance.

At that point, I slept like a baby and I still do to this day. I sleep very well taking the LDN. The one scary thing for me though when I started LDN is that I did notice that some of the symptoms I had gone away from me kind of came back more with burning and tingling with MS. It wasn't like I felt that I was in a flare or relapse.

It's just that, again, things that I had, thankfully kind of written off, had started to come back and that occurred really for the first few weeks of  LDN so much so that I thought about stopping it. I almost stopped it but the LDN research trust Facebook group at the time had a wonderful admin that messaged me privately.

We communicated and she really encouraged me to stick it out and I did. Thankfully, a week later all of those symptoms went away and I started seeing improvements. Really it was at that point that I told people I felt normal again. It was a year after diagnosis and I really felt normal and it felt amazing.

Because I am a very risk-averse person, I did continue with walls, LDN and Tysabri for almost another year. So it was February of 2017 when I finally got the courage to stop Sabri. My neurologist was very discouraging of this decision. She thought that for sure I would have a relapse once I came off Tysabri.

She did support me anyway and I'm so happy with my decision. Since 2017 I've used walls. I've used LDN and I do take some supplementation, but typically with vitamin D to treat my multiple sclerosis, I will say that one symptom that I've struggled with for a long time after being diagnosed was brain fog.

So LDN, as well as walls, helped me with the brain fog but I still struggled with it. I'm an accountant. I'm a professional. I'm expected to come to work and be able to think very quickly. I was very self-conscious about the fact that I didn't feel with the brain fog that I was working quite as efficiently as I did before.

In August of 2017, I increased my dosage of LDN. I'm related by just splitting a pill. So I was taking LDN in a pill form and I just have one, and I took 4.5mg, and really overnight, it was amazing. I guess at that point I'd found my perfect dose because it just completely knocked out the brain fog.

I went back to my neurologist. She upped my dosage at that point, to four and a half milligrams. I've been on that since August of 2017. 

Linda Elsegood: What an amazing story. Very, very interesting. You were actually a year younger than me when you when you were diagnosed 34?

April: Yeah. 

Linda Elsegood: Wow.

Well, that is really something and you're so lucky to have such an understanding neurologist. 

April: Yes. 

Linda Elsegood: Do you know if she's prescribing LDN for anybody else now? 

 It's interesting because I say that she would not have told me about LDN had I not asked her but as soon as I asked her, she was very forthcoming and said yes. She prescribed it for other people. So very easily. She's been very supportive of me since I've gotten off of Tysabri and she seems very pleased every time I come in to hear how well I'm doing and I do hope that helps others, that she'll readily prescribe it for others as well.

What can I say? An absolutely amazing turnaround there and to get diagnosed so quickly as well. Another thing that I say with LDN that I'm lucky about is I don't get sick, knock on wood, because I am superstitious but I still have younger children at home who bring home all kinds of illnesses but I do manage to stay very healthy. I rarely get sick and I do attribute that to LDN. 

Linda Elsegood: Wow. Well, as I say, an amazing story, and thank you very much for sharing it with us. 

April: Well, thank you. I'm just so thankful for everything you've done. I'm so thankful for the research trust and all of the information because like I said before, that's where I started when I was researching and I found so much wonderful information out there.

Linda Elsegood: Oh, thank you.

This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station software, bandwidth, phone lines, and phone calls to be able to continue with the radio show and thank you for listening.

Any questions or comments you may have. Please email me and Linda, linda@ldnrt.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.

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

Anthony from the United States shares his CVID and LDN story on the LDN Radio Show with Linda Elsegood.

Anthony from North Carolina suffers from Common Variable Immune Deficiency (CVID), which is something difficult to diagnose, meaning he wasn’t diagnosed until he was 46. Throughout his childhood, Anthony’s immune system would never produce sufficient antibodies to fight off infections, leaving him seriously ill for long periods of time.

Speaking to an immunologist he convinced to research Low Dose Naltrexone (LDN), they were convinced that the benefits outweighed the risks. In this interview Anthony explains how his recovery seems “too good to be true” and how it shocked many people around him and in the medical community.

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

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

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

Linda Elsegood: I’d like to introduce Annemarie from England who has multiple sclerosis. Good morning Annemarie. 

Annemarie: Good Morning.

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

Annemarie: Yes, it was 2004, when it first started.  it didn't get diagnosed straight away because I felt ill, I went into a hospital, and they didn't know what was wrong with me.  They took some blood samples and after I'd been there for two days I just went completely paralyzed. All I could do was open my mouth my eyes. And they just had no idea of what was wrong with me.  I've never had anything like this before. So they told me that it was probably Transverse myelitis and that was like that for about a good six months.

And, you know, until my next attack came. I think it was just after Christmas and I was sent to a specialist in Queen's square, professor Thompson, and he said, Ann Marie, he said, I'm sorry, but I think we are going to have to tell you that it is MS, which was devastating because, you know, Transverse myelitis I could cope with.

But MS, it's not something that can be cured. And it's a very bad illness. Anyway he said because I had two attacks I could now go on some treatment, modifying treatment and they put me on something called Copaxone, which was at that time, not new, but not very well known, a BETA Interferon was much more known but has got terrible side effects, so I was happy to go on with the Copaxone. Uh, and after, I can't remember exactly, but after about three or four months I had another attack and another one. So that meant that the Copaxone was not stabilizing me completely.

My husband's desperately trying to research for other things which could possibly help me and came across Bob Lawrence and his all his research and got in touch with him and Bob Lauren said that he would be happy for me to try it on a very low dose of LDN.  I think that's what it's called, isn't it?

Yeah. And, unfortunately, it didn't agree with me in the beginning.  I was only on one milligram but he said, just press on with it. But of course, I was given so many tablets, and I didn't really know what I was doing, being honest with you. So I let it lapse for a few months, and then I got another attack, and my husband said, well, you know, let's try this LDN again. And I did and I slowly, slowly built myself up, up to about, well at the moment I’m on 4 mg and do I dare say I haven't had any attacks for about three and a half to four years after I’d been on the LDN and my life has definitely changed. I wouldn't say I'm leaping forward, but I haven't had any attacks.

And for that reason, I am slowly building myself up, and I am absolutely convinced that the LDN that's doing it or not the Copaxone and I would love to stop the Copaxone, but I'm frightened. So at the moment, I'm still carrying on with the two in conjunction. Um, and I just cannot thank Bob Lawrence more, for doing all this research because it is definitely much, much better than the injection, I'm convinced of it. So there you have it.

Linda Elsegood: What would you say to other people who were thinking of trying LDN?

Annemarie: Well, I would say persevere. It is difficult to get - your body has to get used to new medicines and new drugs and whatever. And it is difficult, but don't give up because there is definitely, definitely, a benefit from this.

I have absolutely no doubt about it. And I'm, I'm hoping that you know, the government will release it so it can be available to more people.

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

Linda Elsegood: I'd like to introduce Anne from France who has Multiple Sclerosis. Welcome, Anne.

Anne (France): Thank you!

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

Anne (France): I first started to notice MS symptoms when I was in my mid-thirties. They were urgency, left foot dragged a bit.

Linda Elsegood: And when were you finally diagnosed?

Anne (France): I was finally diagnosed because I went to an optician because I wasn't being able to see red, the colour red. And he said to me: "You need to go and see your doctor." So, he obviously knew what it was. And I knew as well, I suppose. So I went to the doctor who sent me to a neurologist, and they diagnose it in 1981.

Linda Elsegood: So how did your MS behave between 1981 and when you found LDN?

Anne (France): I had very odd social behaviour because the relapse was so different. Sometimes it would be the eyes that were very much affected,  legs walking, losing balance, a loss of energy.

Linda Elsegood: Were you having a lot of pain at that time?

Anne (France): Yes, I had a lot of pain too.

Linda Elsegood: Just trying to remember what you told me earlier. So what about fatigue?

Anne (France): Fatigue was one of the things for me. I was teaching at the time and, once or twice  I think my lessons must be more boring than I realized.

I went to sleep in my own lessons.

Linda Elsegood: And what about cognitive problems?

 Anne (France): I was having that as well. 

Linda Elsegood: So how did you hear about LDN?

Anne (France): I read about LDN in the magazine, New Pathways, and it seemed to be a good thing to try, so I had a go and I was very glad I did.

Linda Elsegood: Okay. How easy was it for you to obtain a prescription?

Anne (France): Very difficult actually, because no one would give me a prescription until I went privately to a neurologist and honestly, in a lot of pain at that time, he didn't know what to do to help me. And I asked him, what about trying it? As you know, there's no harm in getting you to go. And he said: " Right, you go ahead." He would write me a prescription. That was great. I was really overjoyed.  And after that took the prescription to the pharmacy and haven't any problem in getting it. And it was fine. And after that, my doctor wrote one every time I needed it.

Linda Elsegood: What year did you start LDN?

Anne (France): I think it was in 2001. You are now in 2011, right?

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

Anne (France): I didn't know if there are any side effects except that the pain was much less. I was so grateful for that. I was always convinced right from the beginning when I didn't really believe that I had MS, I couldn't really believe it. I thought.

that was being confronted with lots of problems in my life and I've always overcome them. So that was one of the ways it helped me to overcome it, and I was so glad.

Linda Elsegood: So what would you say LDN has done for you?

Anne (France): It got rid of the pain. I can't speak for everyone, of course, but it's helped me a lot in that way, and I was very grateful to that.

Linda Elsegood: Did it help with any of your other symptoms?

Anne (France): It didn't really help with fatigue because I just got as tired as I was before but I maybe have a little less.

Linda Elsegood: And what about cognitively?

Anne (France): I would like to say that it helps but unfortunately, no.

Linda Elsegood: So really what it's done for you is helped with the pain. What would you say to other people who are contemplating trying LDN?

Anne (France): I would say definitely try it and if you can't find that your local GP write a prescription for you, perhaps do as I did and go privately and say you wanted to give it a try.

Linda Elsegood: Okay. Is there anything you would like to add?

Anne (France): I think that family knowing that there was something there actually helped and doctors were there was a wonderful support.

Linda Elsegood: Okay. Thank you.

Any questions or comments you may have, please Contact Us.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.

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

Linda Elsegood: I'd like to introduce Anne from England who takes LDN for Multiple Sclerosis. Thank you for joining me Anne.

Anne: Okay.

Linda Elsegood: Could you tell me when you first started to notice ms symptoms?

Anne: It was probably in the early eighties.

Linda Elsegood: What symptoms were you experiencing at that time?

Anne: They were pretty mild. It was restless legs in the night. That's very mild to start with and then I started to get tingling in my feet, in my hands. And the aggressively, they got worse and worse. In the beginning, I was having about one minor attack every couple of years. Then I was having one a year, and they were getting progressively more severe. And by the time I started taking LDN I was having up to two big attacks a year and losing all my ability to see colour in my left eye. Another time having double vision so I couldn't drive, I couldn't even walk on my own. I was chipping up, and I'm finding it very, very difficult. I was on crutches. It was getting very bad. They were getting worse and worse and worse.

Linda Elsegood: So at that point, if you'd had to rate it  your quality of life on a score of 1 to 10, 10 being the best, what would it have been?

Anne: When I was having an attack, it was going down to like a 3.

Linda Elsegood: And how did you hear about LDN?

Anne:  I had a friend who heard about LDN with MS, and she went on it.  She got major remission. She sent me the information pack. I read that. I was very encouraged and then I did everything I could to get it. This is quite a procedure. Linda Elsegood: Did you manage to get your own GP to prescribe it for you?

Anne:  It took me years before I could do that. I started the LDN in May. I didn't get it prescribed until about 3 years ago. I was getting it from Skips pharmacy in America for a long time. Then I found a doctor in London because I live in London. Who would prescribe it for me? Then I contacted my consultant at Neurology Hospital in Queen's square and he was very unfriendly and very rejecting. I sent him all the information pack. I sent him a lot of information, and eventually, I petted him so much that he got fed up with me and said: " Look, I have a consultant colleague." So I went to see the colleague who was really kind and recommended I would have it subscribed on the NHS. So that is a huge victory for me ever since.     

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

Anne: No. None.

Linda Elsegood: And how long did it take before you started to notice any improvements?

Anne: I never had another attack since starting LDN. I didn't have one attack.

Linda Elsegood: Wow, and has your MS progressed?

Anne: No.

Linda Elsegood: Okay. So what symptoms do you have of MS now on a daily basis?

Anne:  I have the visual nerve damage. My balance still isn't as great as it was but it is okay. I don't fall over or anything like that.  But I'm not as bad balanced as I used to be. I still can't go river walking now, going from the sentences down, then toss myself. I do have some pain in my left foot but it's better. It doesn't really spoil my quality. I can't go for a good long walk, which is a shame, but that's all.

Linda Elsegood: Well, that's amazing, isn't it?

Anne: It's fantastic. I was getting so bad that the attacks were getting really tightening. I was loosing so much capacity.

Linda Elsegood: What would you say to other people who are thinking of trying out LDN and maybe are bit sceptical?

Anne: It has really worked for me, and although there's no guarantee it'll work, everybody is well worth a try.

Linda Elsegood: Thank you for sharing your experience, Anne.

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.

Anne (2) - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: like to introduce Anne from England who takes LDN for multiple sclerosis. Good morning 

Anne (England): Good morning. 

Linda Elsegood: Could you tell us when you were diagnosed with MS? 

Anne (England): I was officially diagnosed in 1980, but I've had about 15 years before. In 1990, I was diagnosed with MS. 

Linda Elsegood: Oh, right, okay. So what symptoms did you have in those 15 years? 

Anne (England): I kept losing my balance that was one thing. And then I started to drag in my right foot, it just wouldn't work properly. You know, I was falling apart it didn't make sense it had to be MS.

Linda Elsegood: So what were your symptoms like by the time you were diagnosed?

Anne (England): Well, I've had very little change. Um, it was very, very slow. I went into a hospital, and they did a lumbar puncture. And as I said, I came at being far worse than when I'd gone in. Whether that was because I realized it was something very serious. And also, I don't know. But my balance and my walking really went down Hill over the weeks.

Um, and then the consultant told me, yes, you've got MS. Thank you very much. 

Linda Elsegood: So before you started LDN if you had to rate your quality of life at that.time on a score of one to 10, 10 being the highest, what would it have been?

Anne (England): Well, I would say it was about seven deteriorating, quite rapidly down to four. Yoga or swimming, all sorts and it was just going out to the window. Plus I got children of six and nine at the time. So it was a big impact. 

Linda Elsegood: So when did you first get these symptoms?

Anne (England) um, well I, I would be, I would say I would be in my mid to late thirties.

Linda Elsegood: And how did you hear about LDN

Anne (England): LDN? It was an article in my local MS magazine, and it turned out there's a guy lived a couple of hundred yards across the road from me, I didn't know because there's the main road and I didn't know him. He just wrote an article singing the praises of LDN. I rang him and took it from there. 

Linda Elsegood: Were you able to get your own doctor to prescribe it or did you have to get it privately? 

Anne (England): Oh, yes. I, I just went and saw my doctor. I took all the information from the LDN side on not only the basic information on its impact on MS, took it up to my doctor, who was very good.

He read it, and he said, you want to try it? Do you think it'll do some good? Here you are. He gave me a private prescription while I'm on the phone. Yes, he was. It was brilliant. 

Linda Elsegood: Yes. So when you started, how long ago was that? Now. 

Anne (England): Um, I can tell you exactly because it was 2003 and I started it just before we were due to go on holiday and I started taking it in liquid form, um, which I, I couldn't really cope with, with messing around with this arrangement and things, cause my fingers don't work very well on some days.

I started in 2003, I'm liquid form, I, within six months I was, I was on the capsules.

Linda Elsegood: So when you first started, did you send the introductory side effects? 

Anne (England): Absolutely nothing at all. Nothing happens in the first two or three days. And then on about the fourth day, I was walking holding my husband's arm to the car. And he suddenly said, you were walking a lot better. And he noticed immediately. I wasn't dragging on his arms so much. I was still using my stick, but I wasn't dragging on his arm so much. And he actually comes into it, and I thought. Well, it's obviously working because I thought it was just me, you know, I will be thinking, 

Linda Elsegood: Oh, that was very quick, wasn't it?

Anne (England): Yes. It was four days and I don't think I've looked back since, you know. 

Linda Elsegood: Right. What would you say your quality of life is now? 

Anne (England): I go out every day. I maintain all the garden, and I want some vegetables going. That's basically a big garden. But I do much better and squat down and, um, do the gardening of sitting on a chair usually. And, um, a couple of years ago, my daughter, got married from here, and we had the reception for 90 odd people in the garden. And I helped paint all the fences and do everything.

Linda Elsegood: If you rated it on a score of one to 10, 10 being the highest, what would you say?

Anne (England): The my quality of life? Yeah. Oh, I'd say I'm on an eight. And I just get on with life, and I thoroughly enjoyed myself. 

Linda Elsegood: fantastic. And would you say LDN has helped lighten your mood?

Anne (England): Uh, yeah. I've had people say why are you always so cheerful? I can't do anything about MS it won't go away. Won't improve with age, so get on with it. You know, what's the point of being miserable about things? 

Linda Elsegood: And what would you say to other people who are thinking of trying LND?

Anne (England): give it a go. There's nothing to lose. Well, you've got maybe a few pounds to lose, and you've got nothing else to do. I've also tried things. I even went down the STEM cell road. 

But just for the sake of a few pounds, give LDN a try, and I certainly found it fabulous. And I continue to recommend it to anybody, and everybody.

Linda Elsegood: Well, thank you for spreading the word and long may your gardening continue. 

Anne (England): You're very welcome.

Linda Elsegood: Any questions or comments you may have. Please email me. Linda, L I N D a@ldnrt.org I look forward to hearing from you. Thank you. You are joining us today. We really appreciated your company. Until next time, stay safe and keep well.

Annalie - South Africa: CDIP (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Annalie shares her CDP and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Annalie is from South Africa and her husband, Lee, became ill with CIDP around 2011. Being diabetic, Annalie originally attributed her husband’s downturn in health to this, however as he continued to deteriorate they recognised it was something more serious.

In search of alternative treatments to help her husband recover, Annalie came across Low Dose Naltrexone (LDN). In this interview, Annalie explains how LDN helped her husband avoid being committed to a wheelchair and regain his life.

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

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.