LDN Video Interviews and Presentations

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.

Cindy - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Cindy from United States who takes LDM for Hailey-Hailey Disease, fibromyalgia and chronic fatigue syndrome. Thank you for joining me, Cindy.

Cindy: Oh, you're welcome.

Linda Elsegood: Could you tell me when you first started to experience these symptoms?

Cindy: Well, the Hailey-Hailey Disease, I had a major outbreak about 20 years ago, and then it was pretty much in remission until 2009, the fibromyalgia and chronic fatigue syndrome I've had for 35 to 40 years.

Linda Elsegood: And will you give me anything back then for the fibre router and the chronic fatigue?

Cindy: No, in fact back then they didn't even have a diagnosis for it. They just said it was all in your head back then. 

Linda Elsegood: that's helpful. Isn't it?

Cindy: Yeah, really, not very.

Linda Elsegood: So when you developed Hailey-Hailey Disease, was there anything they could give you to help with that?

Cindy: They ended up putting me on antivirals and using a topical steroid cream that first I thought I had shingles and they weren't really sure exactly what had triggered it. Um, that was the episode. Twenty years ago, then when I had the episode in 2009, they thought it was poison Ivy, and they put me on oral steroids, but it didn't heal the problem. It just continues to spread across my body.

Well, the Hailey-Hailey Disease, there was a lot of pain when it spread across my body. What has happened to me with Haley, Haley is different than some of the other suffers and that I get a blister and from the blister. I can then develop a secondary viral infection, which is like herpes simplex,

which can spread very rapidly across my body. And if that's not gotten under control quickly, it feels like a severe case of poison Ivy and, and a burning, uh, the fibromyalgia. I was just in intense chronic pain all the time.

Linda Elsegood: So before you found LDN, What would you say your pain levels were like on a score of one to 10, 10 being the worst on a bad day.

Cindy: Oh, gosh.

Seven to eight, really? For the fibromyalgia. 

Linda Elsegood: On a good day?

Cindy: Well, they were all. They were all bad days. Really. I'm someone who has it all the time. I didn't have episodes of remission really. 

Linda Elsegood: How did you hear about LDN?

Cindy: I heard about it on our Facebook Hailey-Hailey Disease site. We have a worldwide support group, and one of the members had the idea that it might, might help Hailey-Hailey Disease

Linda Elsegood: And how did you go about getting a prescription?

Cindy: Well, I kept asking my doctors, I asked my dermatologist, and he wasn't particularly interested. And I asked my primary care doctor, and she wasn't very interested. And I finally found a new young primary care physician, and he had read an article about LDN in a journal.

About a year prior and he remembered that there weren't side effects and he was very open to it. So he prescribed it to me.

Linda Elsegood: Well, that's very reassuring having a doctor to that thinks outside the box.

Cindy: well, and the other thing I'll say about him that was so surprising is that he was a new doctor. I did not have a relationship with him, and he was still willing to go ahead and prescribe it, which I found very encouraging because he was that open to it. I think, especially as a younger doctor,

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

Cindy: I had a little bit of the Herc thing on and off. Um, I felt like I had the flu at various times when I would try to increase my dose. I started on a low dose, and as I would increase, it was almost like I had this cleaning out effect and I felt flu-like, so I would cut my dose back. So I'm one of those people that had to increase it very, very slowly.

Linda Elsegood: And what did you notice initially when you first started taking LDN improvements wise?

Cindy: Well, the first thing I noticed was what I considered almost miraculous on the third night, my trigger points, which are fibromyalgia trigger points that are just so tight and miserable. And my shoulder, neck area started to loosen up.

And I, I mean, I just couldn't believe it. Cause I had taken all kinds of medications over the years and had trigger point injections at a pain clinic and everything and nothing, except that the trigger point injections, which are like an anaesthetic, that was the only thing we would ever open it up like that.

And the LDN on the third night opened it up. And so it was just amazing. And the, that Haley Haley. I, it was more gradual. I just noticed my skin just sort of gradually clearing up.

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

Cindy: For several months, maybe six or seven months.

Linda Elsegood: And have you had any further outbreaks on your Hailey-Hailey Disease?

Cindy: I have. I have, I have small ones, but the thing that I've noticed is they seem to, um, get under control much more quickly. I will say that, um, Haley, Haley is a genetic disorder and my father had it. And unfortunately, my father died when he was 60 years old. And I remember that he suffered more in his later years in life. So I'm 56 now. And it seems like. My Hailey-Hailey Disease has been getting worse in the last few years. So it's hard to exactly say how much improvement I've had because I think without the LDN, my Hailey-Hailey Disease was on the path to continually get worse and worse and worse. So I'm happy if I just keep it under like a mild control if that makes sense.

Linda Elsegood: And what would you say your pain levels are now on a, on a bad day?

Cindy: with the fibromyalgia. I would say it's more like on a bad day, more, five to six, definitely much more manageable.

Linda Elsegood: You said before that every day was a bad day. Do you get any good days now?

Cindy: Um, that's tough because I still have really severe problems with chronic fatigue syndrome. I, I haven't had as much of a pickup from the LDN with the chronic fatigue syndrome as I had hoped. So I don't ever have really great days, but

I will say  that I think the LDN has helped my outlook on life and I feel a little more positive and. A little more upbeat. So  even on the bad days, I don't feel quite as a downer is blue.

Linda Elsegood: good. I mean, there are doctors that prescribe LDN for depression. Mmm. That really helps lighten the mood like you were saying. So that's quite promising as well. What would you like to say to other people who are contemplating trying LDN? Chronic fatigue, fibromyalgia or Hailey-Hailey Disease

Cindy: that I really wish they would give it a try and that even if they have to go very slowly and start on a very low dose, that it's worth it, it was really worth going through that I did.  Um, it's definitely been more sticking with, and I wouldn't trade it for anything.

And it's so much more effective. There are so many of the medications out there that caused such side effects. I would encourage everyone to try it. And I have had a number of friends with all kinds of other ailments that have decided to try it. And they're all having good success for many disorders.

Linda Elsegood: do you take anything else for your Hailey-Hailey Disease or fibromyalgia chronic fatigue?

Cindy: Well for the Hailey-Hailey Disease, when I get the initial blisters, now I, if it's severe enough, I use a little bit of topical steroid cream, and I will take an antiviral so that I don't have the chance of it spreading rapidly for the fibromyalgia. No, I don't really, I don't really take anything. Chronic fatigue syndrome.

There's not too much to take either. So there aren't a lot of medicines for these things that I find effective.

Linda Elsegood: Well, that's a very positive story. Thank you very much for sharing it with us.

Cindy: Well, Linda, I want to thank you for your interest in Hailey-Hailey Disease, because it's such a rare disease that there aren't a lot of people that are interested in hearing about it or researching it.

So on behalf of all the other suffers, I really want to 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.

LDN Research Trust on Vimeo.

Cindy was diagnosed when she was around 26 years old. She had never had any tummy problems or any symptoms prior to woking up one day and the restroom and there was blood in her stool.

She didn't tell another for a month and then told her mother and that was the started of her journey with the doctors. And first they thought it was haemorrhoids.

After about two years and many doctors, they finally came up with a diagnosis of Crohn's due to a biopsy from a colonoscopy.

Her symptoms were blood in her stools, pain and severe fatigue.

Please click to watch the video for the full interview.

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