LDN Video Interviews and Presentations

 

Linda Elsegood: I'd like to introduce Darlene from the United States who takes LDN. Thank you for joining me, Darlene.

Darlene: I had lupus for many years and started back when I was raising my young children, and I felt fatigued and feel all the time. So I found the LDN.

Linda Elsegood: Before we start Darlene, what are the conditions do you have?

What autoimmune conditions that you use LDN for?

Darlene: Well, I use it for Myasthenia Gravis also, another autoimmune disease.

Linda Elsegood: And do you said about Raynaud's syndrome?

Darlene: I couldn't take it for that. I haven't really seen any results from that.

Linda Elsegood: And do you have IBS as well. Is that right?

Darlene: Yes. They said I would need a lower dose for that, but I've tried the lower dose, and it helps the IBS. I don't get the benefit for Lupus.

Linda Elsegood: Ok. So how old were you when you had the Lupus?

Darlene: It started when I was about 29 years old.

Linda Elsegood: And what symptoms did you have at that time?

Darlene: Just feeling ill and weak like you had the flu or fever but didn't run a fever.

Linda Elsegood: That must've been very difficult with young children.

Darlene: Oh, it was terrible.

And I would go to the doctor, and he couldn't find anything wrong with me. "Oh, you're just feeling bad." Everybody would try to blame it on nerves, depression and it took ten years for them to find a diagnosis.

Linda Elsegood: And what were you offered once you had your diagnosis?

Darlene: They said it was Lupus, Systemic Lupus and put me on the Prednisone and all different drugs,

which didn't really help or do any good for me.

Linda Elsegood: And how long were you before you had these other autoimmune conditions?

Darlene: So my opinion? It was about 20 years then I had Lupus.

So I really didn't respond to anything else.

Linda Elsegood: And how many years was it from first being ill to having heard about LDN? How many years in between?

Darlene: Oh, I didn't hear about LDN until 2009, and I started with Lupus in 1989 when I was diagnosed. So that would be 20 years.

Linda Elsegood: So in those 20 years, what was your health like just before you found LDN?

Darlene: If I planned anything, I would get sick, and my family thought I was just sick all the time, but I would feel well some days, and then other days I'd feel sick.

So every time we'd plan something, we'd have to cancel because I'd get a flare of the Lupus. And I didn't feel well. So we had to cancel our plan. I went around like that, just raising my kids and living that way for 20 years.

Linda Elsegood: And what would you say your quality of life was like at that point with ten being the best?

 Darlene: Probably two or three. And then when I got the Myasthenia Gravis, it got even worse. The weakness was worse. I had some days where I couldn't get out of bed. I couldn't walk. I had to use a wheelchair. Couldn't walk distances at all. And some days I would crawl to the bathroom from the bed would be so weak I couldn't lift up a fork to eat.

And that was also in Myasthenia Gravis when that came. So then I had two diseases. I did get the thymus removed for the Myasthenia Gravis because I ended up getting a fibroid cancer to make a long story short. They said they would remove the thymus then along with the fibroid because I had wanted to find this out because they say you improve and it helped them somewhat, but not a whole lot.

Then after that, I still had flares of Lupus and the MG, whatever it was because they just called it the lupus syndrome because I didn't know which one it was bothering me. I tried to treat Lupus with all the lupus medicines and none of them worked for me. None of them helped. Then one day I got an email about the LDN and so I thought: "Wow, check it out."

So I started looking on the web and saw that people were really getting well with MS. And there were a couple of Lupus patients on there. So I said, "Well, why not? I haven't got anything to lose. Try it."

Linda Elsegood: How easy was it to get the prescription?

Darlene: Well, it wasn't too bad. I talked to Crystal on the internet to find a doctor in my area.

And of course, my Rheumatologists didn't know anything about it, but I went to the doctor in my area. He was a regular internist, and he gave me the prescription right away.

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

Darlene: I noticed no side effects at all for me, but I did notice a great difference in my energy.

I was helping to move my mother. She was moving, and I had lifted boxes and all that. And everyone thought I'd be fit because, with Lupus, you can't do that. And you'll pay the next day, I guess, just like MS. And the next day I wasn't sick. I kept feeling good and kept helping her pack and lift boxes the whole week.

I never got sick. I just felt more energy. It was great, like a miracle overnight for me.

Linda Elsegood: Wow. So how long has he been taking LDN now?

Darlene: I've been taking since 2009. So about five years.

Linda Elsegood: Amazing! So how long did LDN continue to improve your condition?

Darlene: Well, it just kept working, and I haven't had any flares for the six years.

I even went through a lot of stress with my son because he had leukaemia and was hospitalized since his treatments. It was very stressful, but he came through it, and I came through it without any medicine taking it.

Linda Elsegood: And what would you say your quality of life is like now on that score scale of one to 10, 10 being the highest?

Darlene: Mines at 10. I'm like the difference between night and day. My whole family tells me that. I am a different person because I've been doing things I've never done before. I'm able to do the things a normal person does and I am so thankful for that.

Linda Elsegood: Well, amazing testimony, isn't it?

Darlene: And that's just one email sent to me really changed my whole life to get that drug.

Linda Elsegood: So, what would you say to other people who are thinking about trying LDN, but maybe are a bit sceptical?

Darlene: Well, I can't guarantee it works for everyone. I have heard some people say it didn't work for them, but I don't know the situation or if they tried it long enough or any of the particulars. If I can say it's worth a try because it has little side effects and it doesn't hurt to try it. If you're as sick as I was, you have to try something. I couldn't go on like that.

Linda Elsegood: Well, that's one amazing story! Thank you very much for sharing with us Darlene!

Any questions or comments you may 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!

Danielle - US: Hashimoto’s Thyroiditis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Danielle from the United States shares her Hashimoto’s and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Danielle was around 20 years old when she first started to notice hyperthyroid symptoms but remained undiagnosed for several years until 2014.

She was previously taking T3 in order to alleviate some of her symptoms, but has more recently found LDN which she believes has significantly increased the quality of her life.

She said “LDN has taken my life to a ten out of ten. It’s brilliant. It’s really helped with my leg inflammation and spasms which were causing me so much trouble on a daily basis.

I could barely get out of bed for my three-year old child at the time, which was really concerning for not only me but for him too. I can finally keep up with my child nowadays, which is great.”

This is a summary of Danielle’s interview. Please listen to the rest of Danielle’s Hashimoto’s and Low Dose Naltrexone (LDN) story by clicking on the video above.

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

Dani from Ireland shares her LDN story.

She had longterm fatigue ever since he was a child, then 11 years ago he started having neurological symptoms, she went to a GP and they told him he was stressed so they just gave him B 12 injections. He started to improve but then got very ill, so he went to another GP and ended up getting LDN. He's getting better on LDN, he’s able to move around a lot more and do daily task easier.

To listen to her story click the video link.

Any questions or comments you may have, please contact us. I look forward to hearing from you.

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

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

Daisy was diagnosed with Multiple Sclerosis (MS) at the age of 21 in 1993. She had suffered from fatigue and numbness since she was a child but it wasn’t until she was a student that her symptoms took a turn for the worst, including serious numbness in her left leg and optic neuritis.

She said “It seemed that all the problems were all on my left side; I had trouble seeing out of my left eye and trouble walking with my left leg.

LDN has helped with both of those problems. I also had no major side effects other than my vivid dreams, which were quite fun to be honest. I wish I still had them.

Even though I’m not sure Low Dose Naltrexone (LDN)  can do lots of positive things for everyone, it seems to do lots of positive things for me. It seems like a safe bet, so by that token you should try it.”

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

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

Linda Elsegood: I'd like to introduce Crystal from the United States to take LDN.  Thank you for joining me, Crystal.

Crystal: Thank you.

Linda Elsegood: Could you tell me when you first started to feel your MS symptoms?

Crystal: I wonder if some of the strange symptoms I had during my last two or three pregnancies was really a mass related. I would get tingling and numbness in my fingers and visual disturbances like blurry vision or spots in my vision. And we would just wonder what in the world is going on.

I asked my OB about it and he just kind of dismissed it as maybe babies on a nerve or something like that. And nobody ever thought anything of it. And I didn't have it after pregnancy. So I don't know if that was related or not.  It's hard to remember the specifics of everything because of the fact that we were just kind of blew it off. I can remember weird things. A couple of years later after my last pregnancy, this may be a year afterwards, I can remember some weird things like waking up biting my tongue because it was kind of loose or hanging off to the side. Then shortly after this, I would have insomnia, restless legs syndrome, and my arms and skin would crawl and itch.

All of this would make me feel really crazy and I started having double vision after this and dizziness when I stood up or just got up too fast. This was right before I had my major symptom. My primary care sent me to an Ophthalmologist for the double vision who said my eyes and optic nerve were just fine.

So everybody was baffled why I would be having double vision. Shortly after this was when I woke up one morning with a numb mouth on the right side. My lips and my tongue were numb and tingly. I was also having headaches at the same time. So I had an MRI scheduled because of the headaches that just persist even major medication. Narcotics did not help these headaches. When I woke up with numbness one morning, my husband said: " That does just not seem right. You need to call the doctor." And my husband is not the type to recommend going into the doctor. You know how men are. When he said that I should go into the doctor, I really took that seriously. That must have sounded serious to him. I went in, I saw a doctor that wasn't my primary care because she was out that day and they tested my sensations with Q-tips to see if I could actually feel.

The acute tip being touched my tongue and different parts of my face, and I could still feel the sensation of the Q-tip there, even though I was numb and tingling. So it wasn't that all feeling was gone. We eventually, after discussing things concluded it might have something to do with my usual nighttime teeth clenching.

I was told to follow up in a couple of days, which I did, but I still had the numbness. So when my doctor that oversaw my primary she didn't feel comfortable waiting for my scheduled MRI, the one that was set up because of my headaches. She said: " I'm going to have to send you down to the ER right now for an emergency MRI."

And so that's what happened. And I went down right away. At that time, the results were read by the ER doctors and radiologists. That night I was very tired. I had to wait quite a while to get the MRI and then for them to read it. The ER doctors and radiologists looked at the MRI and they all thought it looked most like MS. Later on, when I finally got an appointment with the Neurologist, I don't know how it is there and in England but it takes a long time to get an appointment with the Neurologist. When I did finally see him, he did confirm a MS diagnosis. I never did go on a disease-modifying therapy because an older lady from my church had read about LDN, and I knew that the disease-modifying therapies were kind of toxic. She told me about LDN and I asked for it immediately from my Neurologist, and fortunately, he was the type of Neurologist to go ahead and prescribe that for me, even though they did encourage me to start DMT because they said the prognosis for people is much better the earlier you start.

I don't have much to base. I only had that first attack. I can't tell you how much of a difference LDN made in my disease, but I do know it helped with insomnia, and I have been feeling pretty good for having MS..

Actually, when I talked to my pastor the other day, he said:" I'm impressed with how well you've been doing." Sometimes with MS once you start going downhill, it's quick. It's like going off a cliff, and I haven't had that battles so far, and maybe it's due to the LDN that I haven't gotten any worse.

I know that LDN has helped me tremendously with insomnia. I don't have that anymore. I don't have the itching and crawling of the skin or the restless arm. So it seems that LDN has done the job and I do plan on going on Copaxone just because I don't want to take measures to prevent further damage which LDN hasn't yet clinically been proven to do.

But I will be taking the LDN at the same time because I know Copaxone and LDN are the only one you can take with LDN. So as long as I can, I'm going to stay on the LDN.

Linda Elsegood: Would you like to tell people what the regular day for you is like?

Crystal: Sure, as I said, right now,  I just have pain.

I haven't had much fatigue anymore. In the beginning, right after my diagnosis, I had tremendous amounts of fatigue. I would hit a certain part in the morning and I would just have to lay down at night. I tell my kids:" Can you kids please clean this room and they would work together, and I'd go lay down because I was just so fatigued. I don't have that anymore. I've been on LDN now for six months, and I wonder if that fatigue that I used to experience isn't gone because I take it and get a good rest. But now I just have intermittent bouts of pain in various places.

I can feel twinges of pain. They're fleeting. They come and go pretty quickly. I don't have much muscle weakness or anything like that, which is good because I need to take care of my children. So it's good that I don't have anything major right now. I do have visual disturbances sometimes when I get up too fast. I do feel like I'm going to get double vision, but I never actually get it.

Linda Elsegood: But on a daily basis, you have seven children. And how many do you home school?

Crystal: I homeschool the oldest four. I don't homeschool the youngest three.

Linda Elsegood: So that is one busy mum. So I see you're doing extremely well. I mean, it would be a big job, I think for a healthy person, let alone somebody with MS. You are doing extremely well.

Crystal: Thank you. I do have a lot of help. I have the homeschooling materials we use are very helpful. My two younger ones that I homeschool have videos they watch so it's a tremendous help. We have an outside teacher that teaches them.  I'm just there to help out and they do very well there. I have some wonderfully smart kids.

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

Any questions or comments you may have, email us a 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.

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

Connie from the United States shares her Low Dose Naltrexone (LDN) and Scleroderma, Sjogren's syndrome and Fibromyalgia story.

"I was diagnosed in 1992 with Scleroderma and five years later with the Sjogren's and then Fibromyalgia.

Nobody could barely touch me. I had lumps, all the trigger points sore. It was so painful. I had Irritable Bowel syndrome, bladder infections. I had the foggy brain. Scleroderma symptoms were arenas. It was pretty bad. During the winter would have to take an antibiotic. I had a very dry eye and mouth.

I was in extreme pain. I was taking Cortisone. When I stood up, I had to kind of take a minute to straighten myself back out again and be able to walk.

So when I went on the Low Dose Naltrexone (LDN), It was such a noticeable difference because the pain was much better for my back. I quit taking the Cortisone. My quality of life was a 1 out of 10.

I was at the end of my rope. Summers are very busy because we have our own business. We have a horse farm and the kids are out showing and expected to me to be able to move.

I just remember being at the point where I had so many things to do, and I just didn't have the energy, didn't have the pain control to be able to do what I needed to do.

So, what really happened is that my son has Multiple Sclerosis and a friend of mine has MS. And when I called to tell her that my son had it, she brought me Mary Bradley's book and she wrote down a doctor's name, that's here in our town. I started researching it.

I went to the doctor and he told my son didn't have MS. But the following summer, he had another very bad episode. He had optic neuritis and eye problems both times.

About seven years, both me and my son started taking Low Dose Naltrexone (LDN). I have trouble sleeping but it was such a dramatic difference in my health and my wellbeing. I felt like I had my life back.

I've never had another ulcer on my fingers. I don't think I have any trigger points for Fibromyalgia anymore. I've not had a bladder infection. My eyes are much better. I still use drops every so often. The pain in my back went away immediately.

I could walk straight. I wasn't walking crooked because my back hurts so bad. And it was just a remarkable difference".

When my son started taking LDN, he was a college student, he was living on his own, he was supporting himself, and he was working like three jobs and getting a 4.0 in college.

So he just felt so good that he was doing everything. And he was living with a bunch of kids that were partying all the time. So he's doing fine.

This was a summary, please click the link to watch the whole interview.

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

Conja from the Netherlands shares their Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story on the LDN Radio Show with Linda Elsegood.

Conja is a nurse who researched Low Dose Naltrexone (LDN) thoroughly with Hashimoto’s patients before taking LDN herself for Multiple Sclerosis.

She said “LDN has been a remarkable drug for both me and my patients. As long as you take it slow, then the side effects will be very minor.”

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

Clare - England: Lyme Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Claire from England who has Lyme disease.

Welcome, Claire.  Could you tell us your story?  

Claire: I've gotta start at the beginning. Um, in 1988, I got toxic fume poisoning from smouldering polyethene, which severely affected my immune function. I recovered a little bit, and then I was gradually getting increasingly ill.

I didn't know why. Um, and it turned out that, um, I was becoming allergic to all sorts of everyday things. Non-functioning immune system. Um, Yes, in 1988. And then, um, in 2003 autumn, I developed a mild form of so-called Emmy, which later was diagnosed with diabetes a lot later. And then, um, just every year later, um, Oh, the mile form left me able to still do work about half the time.

Um, but, um, Acute bronchitis on boxing day, 2005 started then, um, started back to steroids. I'd always had a bit of a sluggish style anyway, and, um, and the Lime disease got going. I never recovered. Um, I was flowed from that day on. I couldn't. I couldn't work. Couldn't do anything.

Linda Elsegood: So how old were you when all this started

Clare:Um, Well, I was born in 40, uh, 49. Um, when the mild form of, um, sort of called ME started in 50, uh, when I was struck down to say What are you saying? Nothing. I ain't got a clue. Hmm, I'm sympathetic. But, um, the doctor said what he needs to do is eat organic, get an allotment who didn't seem to work out, but I haven't got enough energy to dig an allotment. I did get one, but I couldn't do anything with it.

Linda Elsegood: So how did you hear about LDN?

Clare: Um, that was, um, about a year or so ago in, uh, let's see, in 2005, um, A friend of mine is a scientist who knew she had Lyme disease but hadn't been diagnosed, finally found one GP in the country who was pleasing people. And,

um, so I went, she said, she thought I had it and I went to him, and I gave half of it.

And he's been treating me since 2005 and gradually killing off the bacteria and, uh, microphone area worms. Cause I've got them as well. Those strong, poor ammonia, sort of a common word, but I think it changed the name recently. Um, and as I was gradually getting better, but I used to plateau, I'd have a series of treatments now keep flattering.

And so he'd keep introducing altering the treatments. And, um, then I got to a reasonable state.

She said, okay, try LDN. And so I did, and I'm on now on, I kept him. Many grams twice a day, which is pretty high dose. I know, but that's how much I need. I quit built up gradually from whatever it was, the lowest amount, one, one gram, a half a gram or whatever.

Linda Elsegood: So how did you find  LDN did you experience any symptoms as side effects and then this side of it?

Claire: Um, I just kept increasing the dose until I actually did what it was meant to do. I give me a bit more energy. And, um, uh, this is the first year for several years, and I haven't had hay fever, which I need to, everything went wrong.

When I got ill in 1995, I've been perfectly fit, extremely fit, healthy, energetic, very energetic.

And then everything went wrong. I developed just about everything except a plaque on my teeth. So other than the fatigue,

Linda Elsegood: has the LDN, anything else for you?

Clare: It's mainly improving, put my energy and immune function, and it's an ongoing process and it still helping, I don't tend to pick up local bugs.

I do take lots of numbers, like a hint of a sore throat or a sniffle. Um, but it would have been in the past. It would have developed a little bit. Now it doesn't really, but it's definitely, um, strengthening my system.

Linda Elsegood: Thank you very much for sharing your experience.

 

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.

Claire - New Zealand: Fibromyalgia, Connective Tissue Disease, Restless Leg Syndrome (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Claire from New Zealand first got sick when she was around 12 or 13, and was diagnosed with celiac disease.

It took quite a while to have a diagnosis after missing school for six months with tummy pain. Since then she has followed a strictly gluten-free diet. 

Then around about four years ago, she started to have headaches and her inflammatory marker blood tests were elevated,and couldn't work out what was wrong and eventually that went away or improved anyway. After changing jobs the headache came back and along with it came, joint pain, joint, swelling, extreme fatigue, shortness of breath.

She had mouth ulcers and, a butterfly rash on her nose and cheeks when she was about 26. So it took quite a while to get a diagnosis of connective tissue disease. 

At this time she was taking many medications and was in a lot of pain. After doing research research for autoimmune diseases as well as the fibromyalgia. At this point she was working 10 hours a week, and I was really desperate. So I thought I'm going to try it.

After the first night she slept really well and she didn't have any restless legs, she was really excited. 

To listen to the full story click the video link.

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

Claire from Canada shares their Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story on the LDN Radio Show with Linda Elsegood.

Claire was diagnosed with Multiple Sclerosis (MS) when she was sixty-four years old. Prior to her diagnosis, she noticed that she began to stumble when walking long distances and had a tingling sensation in her feet.

“By the time I was diagnosed, I had numbness in my feet that extended all the way up to my hip. I had consistent pain in both feet. One day, I was in the office and the tightness extended all the way up to my collarbone, which really scared me.

When I started taking Low Dose Naltrexone (LDN), the numbness and pain stopped straight away. I would say my fatigue is mostly gone too. Before I started LDN, my quality of life was no higher than a four out of ten, but now it's definitely and eight or even higher.

To others thinking of trying LDN, the side effects are so minimal. I know it may not work overnight in everyone, but if you can find the right healthcare partner, I think it will be tremendously helpful.”

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