LDN Video Interviews and Presentations

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

David from the United States shares his Chronic Fatigue Syndrome (CFS/ME) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

David first noticed symptoms of his Chronic Fatigue Syndrome (CFS/ME) in the spring of 2000 upon returning from a trip to the West Coast. For the next 6 months David suffered from a drop in his overall energy levels and was unable to exercise regularly anymore.

David thankfully had prior knowledge of Low Dose Naltrexone (LDN) and sought it out from his local pharmacy. Within three weeks of starting on LDN he was already beginning to feel much better and was able to return to regular running.

David strongly recommends that people research LDN and learn about its benefits so that if you know someone, or even if you yourself, is diagnosed with an autoimmune disease you can tackle the issue swiftly.

This is a summary of David’s interview. Please listen to the rest of David’s 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.

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.

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.

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

Linda Elsegood: I'd like to welcome Chris from England and Chris has multiple sclerosis. Welcome Chris

Chris: Good evening.

Linda Elsegood: Could you tell us your story?

Chris: Uh, well, yeah, I mean, um, in back in 2002, I got diagnosed with multiple sclerosis. Um, after several years of going to the doctors and the Dr. Carney was stress, stress, stress.

Well, I had all these weird and wonderful things happening to me. One of them was, I was walking around. Super bummed balances  I felt drunk, really. And after being in the licensed trade for 25 years, that really wasn't a very good image, Didn't understand what was going on. And it wasn't until I moved out of London  And was taken into hospital when it was stay. Now  I'll go onto the road to actually discover what was the matter with me. Okay.

Linda Elsegood: When you say we'll deal with other than the staggering, what were your symptoms at that time?

Chris: Well, the first symptoms that I had were, Hey, I'm tingling at the end of the book fingers.

And obviously what I've already said, who can only see forward. Drunk really suddenly walk in the side and banging on the wall, uh, old-style or eight, um, pumps my bladder one minute or I didn’t want to go to the toilet and the next minute it was like switching a light on. I know, I know absolutely fasting. Yeah, no, it was another season.

So, you know, wasting between the sounds and what's going on here, you know? And, um, that's, that's the first symptoms that like go right.

Linda Elsegood: What happened later on?

Chris: Well, I mean, I didn't realize this at the time, and it wasn't until I turned on

I think they call it a cognitive thing. Kamia Oh, I actually tried. Oh, I'd call it to focus. So I was unable to concentrate on being a businessman. It was quite difficult, really either. I couldn't really concentrate on things and my reasoning sort of went out the window. Really. In fact, I might call you back to see you.

At one of the worst are people, is that I transferred all my assets over to my wife nine, um, bought house cash in the Knoll, cocking her nine, and then she decided that she didn't want to be married to someone who's here anymore. We got divorced. Um, that was quite a bank cause she's also was making the right decision at the time because I.

Well thinking strike really? Um, connectedness.

Linda Elsegood: How old were you when you were first diagnosed?

Chris: Um, with respect to 2002. So that, I mean,  9years ago he said that's I was 41 Right. A young man. Yes. Oh, I'll just do like a young man.

Linda Elsegood: Of course you are. You're younger than me. So what happened

Chris: Well, I mean, obviously I was going through, I think what lots of people do when they get a new with slight multiple sclerosis they do all the research on the internet, see all these weird and wonderful, wonderful cures. We can cure this and cure that and, um, just grasping at straws for it. And I, I sort of got a little bit disillusioned with the NHS who put me on, I was on steroids, which I really didn't like, no one told me what steroids would do to me. And actually, turn me into a bit of a mean person.

Also, the very nice person really turned into someone who was having the weight of it, um, and also was on, um, I think it's really best, which is interferon three to one. I, and always kept to myself three times a week for three years. And I kept saying to my consultant, no. No, I don't think that she's doing me any good, you know, too long, getting worse and worse.

I mean, I was under a lot of stress as well. I've got to be it. Um, but I sort of found out, I heard about LDN quite a number of years ago, and all these apps were read about it. Try to get LDN through my own GP. And she flatly refused to. Um, proceed within, in any way, shape or form to a private doc who I cannot remember.

He's nine. Um, But speaking, I think dial through with it now, just now I want to stick with what I'm doing, and I didn't go through, I think I had so much else going on in my life. There'll be 50 people and the children and pretty well. I've got to a point where I sort of came out of the episode of both. So I've got to accept some stuff and. I then got the volume to be, but the Scarborough, the multiple sclerosis resourcing through culture stuff, and their website have been texting a new man that the information that they've got and their bridge.

So he's colossal really. And what I like about, and you start, they tell you absolutely everything about everything that's on the market, you know? But they don't, they don't fight for anything, and they don't leave anything out to the person. And he said you should not. So then LDN comes back into my head, and then I start looking at what they were saying about OTA.

I obviously then saw the LDN research trust on there. I'm got in touch with you. you gave information about a doctor that would, um, speak to me then privately. I spoke to that doctor at my consultation, and I've now been taking LDN for a third of $233 today because I'll keep a diary. Right.

Linda Elsegood: Okay. So what have you found out with NHS?

Chris: Well, it's quite striking to me because I have to start all the research that I did about LDN. Um, Eight eight. I went off to start taking it. I was looking at me as this one, the drug. Yeah. And I was how he, it was going to be doing all these wonderful things for me and writing things that were wrong with me.

Um, but LDN for me is quite a subtle drug. And one of the first things that I notice that improved with, well, go ahead. We're more or less. So I got better. Most of my cognitive thinking and my concentration values got better. Yeah. I'm not as balanced as in. I have to be honest, hasn't actually improved that much.

Um, but I have had a situation where we've got our wires crossed, and I had her. I had a period of time I didn't take LDN, because I didn't get my prescription and I did actually nine to how much LDA is done for me, because also now these things coming back and my eyesight got worse. And as soon as I went back on the LDA, things started to get come right again, you know, I mean, LDA is not the only thing that I've done in my life to combat in it.

Positive thinking I exercise regularly, but there's regular stretching and also change diet considerably like, um, a natural one. I’m winning the battle if you say..

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

Chris: No, it didn't have any side effects. No, no worries.

Linda Elsegood: So how is your fatigue now, Chris?

Chris: Well, since I've been taking LDN, uh, the fatigue has been barrable really.

I mean, I'll still get it from time to time, but all actually that's more of a. Food issue more than the multiple sclerosis where before it was all used to describe it, let's say fought in the cold in us, spider's web and the more full against people, more than twined I've got until you act to just give up, you know, you actually give up, but no action felt like that anymore.

And I like to think when I like when I do get fatigued. It's more actual. Thirty shirts more than the EMS while I can ELT. And yes,

Linda Elsegood: What foods have you found make you feel fatigue ?

Chris:  Well not, no, it's not so much the food that makes me

Feel fatigue this new food intake or insulate sort of block or four, maybe five times a day. I like to eat smaller meals, more regular. Like if work workload is. As such the loyal back to miss a snack or something, or that auto painted to the house and I'll get tired. Right. Cause I'll miss that out. Move a food issue, not putting some petrol in my body to take the DMS, you know?

Linda Elsegood: So would you continue taking LDN?

Chris: Absolutely. We got that. Absolutely. And what

Linda Elsegood: would you say to other people that we're thinking of trying out the LDN,

Chris: I'll have recommended it to people. I had a friend who had mine. Yes. I know. Recommended it today.

Uh, we don't have a lot local contact.

Um, and you know, I would recommend it to anybody. And I think, I think I've been uptown or talked to about it. Who initially said now, she's actually become to say my progress because I need the Mondo. What did you actually see him the next day? I've seen him a year ago,

looked at me, looked at his pipe.

Linda Elsegood: when you've got the progressive disease it’s great to actually get: it's still such a big deal. Isn't it. To actually stop progressing.

Chris: We've had that. I mean, you need to before. I mean, I, to have a lot of stress with people and stuff like that, but before I started taking it with LDN, I appeared at the time there all wasn't getting out a big bloke.

Yeah. Now on. Yeah, I'm not saying that I could run a marathon, but I'm walking, and I'm late in the next life. You know, I've discovered cycling, and I use it as my form of walking my children. Now, this is me from the marriage. They all have migrated over to me, and I cope with that as well. And I'm good and all sound always up because of that.

No boys crossed. I actually stopped taking them. Nope, not because I wanted to, but just the fact that I didn't have the medication and I think now it's a different,

Linda Elsegood: well, thank you very much for sharing your story with us, Chris. And may your success Continue

Chris: Thanks to 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.

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

Cheryl from the United States takes LDN for Lyme disease and Co infections.

Her story  goes back into childhood. She had always struggled with some sort of illnesses. Gastrointestinal issues,  stomach virus, rashes on her face, etc

In her teens she developed depression and anxiety and later pain.

When she was 21, her dog got very ill and she noticed she had a four to five inches in diameter round bite that  looked like a Brown recluse bite. She was having palpitations and strange symptoms.  That bite stayed for about two to three months on her body and it had a little centre point.

They diagnosed her with fibromyalgia in 1994 because she felt like she had the flu all the time. And it just never went away. She was vomiting all the time, she had to leave school in 1995 and declared total and permanent disability. Then she slept all day and night, was freezing all the time, and nobody paid any attention. And at that time, Fibromyalgia  meant "It was all in your head." In 1996 a  specialist put her on Ambien and Flexeril.

She went into remission after started seeing his current husband from 1996 to 2000 until her children were born.

She started to get all sorts of symptoms,  restless legs and vomiting.

She had twins and just slept one hour each night and by the time they were eight months old, her body was just in terrible pain, her gallbladder had gotten to the size of the liver. She got a two hour surgery.

The months following, she ended up trying Methadone, Oxycontin and all sorts of pain meds. She was freezing, had chills and sweats, had a lot of allergic reactions and scratched all the time, couldn't walk and visibly see swelling in her feet. So by late 2009, she was unable to leave her house, became housebound and couldn't wear shoes.

She would wear earplugs because she was so sensitive to sound and light. Everything had to be covered on windows. She was not eating most of the time and still was vomiting.

Later on she went to a clinic and they told her she had been exposed to Borrelia. She received treatment with herbs and after 3 months was able to at least get out of the house in a wheelchair.

She came off opiates because she had Sjogren's syndrome.  Eyes and mouth were extremely dry and so she started a huge elimination diet. She started  on very low doses of LDN she learnt about LDN through a naturopath.

She started at 0.1 milligram, and  was going to bed at 4:30 AM. So she started taking it at 4.30Am and her schedule readjusted. Now she takes LDN at around midnight. She tried to up the dose but because she is very sensitive to medications, It took 4 months to see any results.

 "I tell people don't quit just because you don't see results right away, my body's been sick my whole life,  so it's not going to turn around in five seconds.

But by three months or four months after starting LDN, I noticed that I really didn't need a coat.

I went out one day to bike, and I wear a normal shirt without not sweating and do not have chills. I was able to come off medications like Neurotin and Flexeril.  By 9 months I could bend and clean.

Before I couldn't even pull my back leg up to 90-degree position I couldn't walk down my stairs.

I think my quality of life is probably about an eight or nine now and some days it's actually 10. I have completed a course successfully at Oregon state university after not being able to go to school for years.

And I do pottery, I am a personal advocate now in Portland for a group.

And so I would say that my quality of life is quite good because I get to talk to my children and I get to eat food, and I get to walk up and down my stairs, and I get to sleep.

I'm not saying it's perfect. But I consider level three pain or level two pain to be really good."

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

Carol from England shares her LDN story for ME/CFS. She started showing signs around 15 years ago. She had swollen glands and terrible muscle and joint pain. She also has difficult time making words out when she spoke. She found LDN through one of her friends through Facebook and decide to give it a try.  After she got LDN her pain levels went down and she had way more energy to get through the day. Her Quality of life improved drastically.

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. Thank you for joining us today. 

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

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

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

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

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

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

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.

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.