LDN Video Interviews and Presentations

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

Dianne has a family history of Hailey-Hailey disease, a chromosomal defect.

Her skin first broke out in her 20s, and a biopsy determined it was Hailey-Hailey. It wasn’t much of a problem until her 50s, when she started having more frequent outbreaks and longer healing. Topical steroids, oral antibiotics, antifungals, antivirals all were used to treat the disease and secondary infections.

It’s made worse by friction, so it causes blistering in folds of skin and under waistbands. The blisters open, get fissures, and are difficult to heal. She would sleep with ice packs for the itching. She found a Facebook group on Hailey-Hailey and discussion of low dose naltrexone (LDN). She was familiar with naltrexone from working in the addiction field, and she researched LDN. Even though Hailey-Hailey is not an autoimmune condition, she thought it would help with the inflammation, and LDN seemed very safe to take.

Her dermatologist researched as well, and prescribed it during a bad breakout one April. She dreaded summer because how sweating and friction make Hailey-Hailey worse. She started LDN that September and persisted taking it despite wild dreams. By the third week on LDN she could see improvement in her skin, it wasn’t seeping, and she was sleeping better.

Currently she is greatly improved, but still gets some outbreak if she wears something that rubs; but her skin heals quickly. She does not find stress to be a trigger, however eating too much sugar or wearing something that rubs will cause some blistering. She recommends LDN for its effectiveness, lack of side effects, and low cost.

Summary of Diane's interview, please listen to the video for the full story.

Any questions or comments you may have, please Contact Us. We look forward to hearing from you.

Diane - US: HIV, Fibromyalgia, CFS/ME (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Diane from the United States. You take LDN for fibromyalgia, chronic fatigue syndrome, and Diane has been HIV positive for 26 years. Thank you for joining me, Diane.

Diane: You're welcome. My pleasure.

Linda Elsegood: Could you tell me when you first started to become unwell with your fibre morale during your chronic fatigue?

Diane: Approximately 2008.

Linda Elsegood: And what were you noticing at that time?

Diane: Um, I was having several issues. Um, primarily though I, uh. Had passed out, they diagnosed as single P.  Here in the United States. It's an unexplained reason for blacking out. Um, and everything seemed to just go downhill from the day that I blacked out, fell and hit my head.

Um, and, um, was, I was put on, uh. Short term disability, so we could figure out what was happening to me in, in the course of, um, seeing doctors. Uh, I was diagnosed with fibromyalgia. Um, and along with that, uh, unfortunately, a seizure disorder due to the fall and hitting my head. Um, so that started my medical journey, uh, until I had several issues.

That don't necessarily, the seizure disorder doesn't necessarily relate to the ledges now check them, but the fibromyalgia is chronic fatigue. Certainly did. When I was diagnosed with the fibromyalgia, um, my doctor is very much a proponent of low dose naltrexone, and he mentioned it to me, but I did not take it.

Take the advice because it was very concerned about everything that was happening to me. So he mentioned it to me a few times and let me be comfortable with my decision. And then I finally, after a few years, once I got everything else straightened out, um, it was concentrating solely on the fibromyalgia in the chronic fatigue to perhaps give it a try.

And um. Yes. So, um, the winter of , uh, 12 December 2012

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

Diane: Well, uh, I have to say, I immediately felt a lot more energy and felt better, uh, within a couple of days. Mmm. Side effects. After a week reselling or first week, I noticed vivid dreaming and insomnia. So. Uh, I spoke to my doctor about it, and he suggested that I, um, just the dust, adjust the dose on my own, kind of play around with it and see what would work for me.

But unfortunately, at the same time, um, I got very sick with a virus that was going around members of my family. Got it. And um. I just became concerned about my immune system being getting so sick with this virus that I stopped the low dose naltrexone. Right. Um, well, when I, when you get very sick like that, and I didn't bounce back from it where my family members did, I was shipped for about six weeks.

With the HIV, even though I have a very healthy immune system, uh, and I didn't fully understand what the LDN was doing for me. I stopped it because I just wanted to get better again. Um, if you asked me today, would I stop it? I would say no, but I didn't know enough back then. Um, what the LDN was, was actually doing for me.

But then it happened again two more times. And it was coincidentally, we stopped the LDN and was off it for several months. I started again, and I got sick again. And I even, um, we sold to the Yahoo group and posted on there, if you have anybody ever, you know, uh. With this society act where you would get this upper respiratory lung, lung infection.

And everybody said, no, that's not normal. You know, nobody had experienced that. So I was concerned that something might be going on with me. So it just seemed that every time I took it, I got sick, and then when I went off it, I got better. It was purely coincidental. It was just a bad year. There was a lot of, uh, the weather was crazy, and there were a lot of germs going around, and so I just got sick a lot, which is not normal for me that year.

So moving forward, um, in the last, last six months, started with the LVN again, and I've been on it on a consistent basis, and it's been working very well for me. Fantastic. So what would you

Linda Elsegood: say now your quality of life is like?

Diane: Um, I would say that taking the LDN has given me back a good portion of my life. Um, prior to the LDN, the fatigue and the, uh, body. Aches and pains were so debilitating that I didn't do a whole lot. Now with the LCN, um, I feel wonderful. Um, and even though I might feel a little achy, uh, I still, it allows me to go out and exercise.

Um, I led to walk—a mile or two. I take yoga classes a couple of times a week, none of which I did before the load check stuff. Um, and socially I'm more open to going out and doing things, being able to, um, Nick commitments, which was something that I couldn't do prior to the LDN. Um. Fibromyalgia also comes with something called fibro fog, where you have cognitive dysfunctions and the inability to concentrate, or for me specifically, organized for an organized task to get things done with the LPN, fibro fog lifted.

And I was able to see my way through the day until you, okay, this morning I need to do this and this, and then this afternoon and that, uh, and to sit in the exercise, which is so critically important to me, the LTN allowing you to exercise that alone changed my life completely. And then it just gets better from there.

Well, it's amazing. Thank you very much

Linda Elsegood: for sharing your experience with us.

 

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

Diane - US: Rheumatoid Arthritis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Diane to the United States to takes LDN for rheumatoid arthritis. Thank you for joining me, Diane.

Diane: You're welcome. Linda beauty. A pleasure to speak with you again.

Linda Elsegood: Could you tell us when you started to notice the pain

Diane: from rheumatoid arthritis? Um, I began having daily pain with my feet, the week of labor day of 2012.

That would have been early September. I had been canning tomatoes, and I thought my feet just got sore from being on them. And I figured with some rest after a couple of weeks, the pain would go away, but it didn't. And after about six, four to six weeks, I said, this is not normal. I need to have this look at.

So I went to my doctor and talked to him, and he agreed that it's probably arthritis and he prescribed Tylenol, which was not acceptable to me. He told me it was safe to take Tylenol for the rest of my life, which it is not. And I had told him that earlier in the year, just a couple of months prior to my pain, my brother was diagnosed with rheumatoid arthritis and I was concerned that I might have the same thing.

He dismissed my concerns. I chose to seek a second opinion. Um, I went to an orthopaedic doctor who did, when I went there and told me they didn't do feet only above the ankle. So I had pain in my knee. So I had him look at that, and he diagnosed me with osteoarthritis in my knees and told me I should go see a podiatrist.

So we have one that comes into the town where I live to the hospital as an outreach clinic, I made an appointment, and I went to see him, could not confirm rheumatoid arthritis, but did do an examination and some x-rays of my feet. He did say that rheumatoid arthritis can frequently show symptoms first in the feet.

Where I had the pain, and he referred me to a rheumatologist, and you basically have to be referred to a rheumatologist in order to get an appointment. You can't just call up and make an appointment yourself. A doctor will have to refer you. So I chose to go to the doctor where my brother had once and was diagnosed, which was in Sioux Falls.

It's about 90 miles from my home. And they did blood tests and some additional x-rays there. And the day, the Monday after Thanksgiving in November, I got a phone call from the doctor confirming that I had rheumatoid arthritis. He wanted me to take methotrexate Plaquenil folic acid. And potentially prednisone as treatment.

I refused. I asked him if it would harm me to wait to start treatment for a short period of time, so I could explore alternative treatment protocols. He agreed that a short timeframe to look into alternative treatments would be okay. We felt I was fairly early in my disease and that a short delay would not unduly harm me.

So I started to do research on my own, and I prayed, and I went to the library and requested some books. One of the books I found at the library. Um, I believe it was through an interlibrary loan was honest medicine written by Julius Shopee. Hope I pronounce her last name correctly, and I read that book after a very long heartfelt prayer.

And believed once I had read through the book that I may have found the treatment I wanted to try, and that was low dose naltrexone. I didn't stop just with her book. I further researched it online. Um, I Googled it. I found some Yahoo health groups. About rheumatoid arthritis and others about taking low dose naltrexone.

All of my research confirmed for me that this was a treatment that I wanted to try as an alternative to the harmful or biologic drugs normally used to treat rheumatoid arthritis. So I went back to my primary physician who I'd been with for many, many years. And I went back first to the rheumatologist in Sioux falls and ask about getting a prescription for low dose naltrexone.

The rheumatologist refused to prescribe it. He said that it's not an approved treatment based upon the American college of rheumatology. Treatment protocols for rheumatoid arthritis. He did say I could go and try to get it from my primary physician. And if, um, I would get the prescriptions and the physician would, you know, he would monitor my treatment from that point forward.

I then went back to my primary physician and. Asked about getting the prescription for low dose naltrexone. And my primary physician refused to prescribe it. He seemed to be more concerned with lawyers and any potential liability for giving me an off label prescription for a drug that's been approved by the FDA.

I did not like that response from my physician because he seemed more concerned with malpractice and liability that in treating me the patient, I then fired my doctor and have not gone back to him since. So I looked for a physician that would prescribe the low dose naltrexone for me.

 Through online support groups on Facebook, including your group, Linda and another group.

There is a woman who keeps a list of doctors that will prescribe. I was also doing acupuncture treatment in 2012, and the acupuncturist had recommended a doctor for me. And it was the same doctor that was on the list kept by one of our angels in the group. So I made an appointment, and I went to see the doctor in January of 2013.

He prescribed the low dose naltrexone for me. I started February 1st of 2013. With a three milligram dose for two weeks. And then I bumped up to 4.5 milligrams, and I've been taking that ever since.

Linda Elsegood: And what was your experience when you first started?

Diane: Well, when I first started taking it, um, I'm not a sensitive, a person that's sensitive to meds.

Some people are, but I seem to tolerate most medications fairly well. I had positive thoughts going into it. This was my treatment of choice. Prior to starting the low dose naltrexone, my rheumatoid arthritis was getting worse. Um, the fatigue and brain fog from the disease was not well, was not good. Um, I get up in the morning, and I'd feel I say about 80 years old.

Um, I was like 50, 51 at that time and I could barely walk. To the bathroom from my bedroom, which is just across a very short hall, um, six feet or less. And it was very difficult getting out of bed in the morning and getting to the bathroom when I started taking low dose naltrexone at nighttime before bed.

I could feel little tingles in my legs, almost like when your legs are waking up from being asleep. Um, If anybody, you know how it goes. If you sat on your leg too long or something, your leg will go to sleep cause of blood flows, net going. And when you get up in the blood flow is restored. You get a sharp tingling sensation in your leg.

As your blood flow is getting back and your nerve endings are waking up and so on. It wasn't that severe, that tingling I felt, but I could tell that something was happening. Um, by the time I jumped up to the 4.5-milligram dosage in two weeks, I felt a lot more like myself. Um, being a 50, 51-year-old woman, instead of 80 years old, I had more energy.

Um, the pain in my feet was less, it wasn't totally gone, but it was a lot more comfortable to walk.

Linda Elsegood: If you had to rate your quality of life before you started LDN on a score of one to 10 and 10 being the highest, what would it have been?

Diane: Well, I was still able to walk,  um, the rheumatoid arthritis was mainly in my feet, so I would probably say maybe a five at that 0.5 or six. The fatigue was pretty bad.

So a five or six seems fair. Um, I know that there are people out there in a lot more pain than I am, and some are using canes or walkers, or even in wheelchairs. And I would have to say there's just a lot worse than mine.

Linda Elsegood: What would you say your quality of life is now on that same scale?

Diane: let's go back to when I first started with the LDN and, and how it improved.

I would say it went from a five or six to maybe two or three because I did feel more like myself. 

Diane: Dan is good. Then I would say it went from. I kind of did that backwards. Then I would have said that my quality of life was probably like a four or five then.

Um, and then it improved to like a seven or eight. Um, I still had the daily pain from the rheumatoid, but it was better. And the brain fog and fatigue improved. So instead of feeling 80, I was more feeling my own age of 50. There's a big difference there. Um, to be fair, um, I have to say that LDN was not enough for me.

Um, it, it served me very well for months. But in the summer of 2013, I had a lot of stress at work. They were basically trying to terminate me. Um, there's a long process that they had to go through to do so. And I had requested reasonable accommodation at work to try and help deal with some problems caused by my rheumatoid arthritis.

Which were denied to me and the stress and the disease was very active and aggressive. It got worse for me in the summer of 2013. Um, I had to choose another treatment to go along with the LDN. It is again, considered an alternative treatment, but I have been taking antibiotics since the fall of 2013, and together the two are working very well for me.

Linda Elsegood: I mean, any condition where you've got an autoimmune disease, stress and trauma

are really big

triggers. So hopefully. Once your life calms down, things hopefully will improve tremendously as well.

Diane: I agree with you. Linda stress plays a very, very big role with my disease, and I'm sure with many others, such as what you have ms.

Um, in our online support groups on Facebook, you hear that all the time stress can trigger flares. Um, whether. For rheumatoid can trigger flares. There are different things that can trigger it for different people. It's been amazing. It's been quite a journey of learning and awareness since I been diagnosed in 2012, um, there's a whole world out there, not just my little corner of, of the earth.

Where people are suffering from these diseases, many doctors, not all of them, but many doctors are trained in medical school. How to treat symptoms of diseases. Some doctors look for causes. Some doctors try to treat the cause instead of the symptoms. It can be frustrating when a patient has a doctor that only wants to treat symptoms and not look at causes.

Um, I was fortunate in that I got to a doctor he's an osteopath where they try to treat the cause of a disease instead of the symptoms. And that's one reason I'm doing the antibiotic therapy in conjunction with the LDN. Um, for anyone listening to this interview with you today, I encouraged them to educate themselves.

Do your own research. If you don't feel comfortable with a treatment that is suggested to you, you have the right to refuse it and search for your own solution. Like I did. Um, look at side effects of medication that are prescribed for you. Decide. If you are willing to take that medication based upon what it can do for you and your condition and the side effects that could affect you at some point.

And if you're not comfortable with that medication, don't take it, find something else because there are alternatives out there. From the online community, Yahoo groups, Facebook groups, particularly, there are so many people that are successfully using what is termed alternative medication, low dose naltrexone, successfully to treat their conditions.

Um, I know you're doing interviews with many people with many different diseases, but I've seen people online testifying from firsthand experience of the success they're having with low dose naltrexone for multiple sclerosis, thyroid issues, fibromyalgia, rheumatoid arthritis. It's. Very individualized.

Your dosage may be different. Even 4.5 is considered an optimum dose for some things, but with ms and smother diseases, thyroid issues, the dosage can be very particular to you as an individual. And. One of the groups. I have an online support group for people taking or interested in taking LDN for rheumatoid arthritis disease.

And there's one woman that takes five milligrams per day. Some women do better at three; it's very much up to how an individual body works with medication. And I think for rheumatoid arthritis, diet can also play a very big part. It's not to be ignored. I have not done autoimmune protocol diets or gluten-free although, should I choose to do that?

At some point, I do believe it will enhance the treatment that I'm already taking.

Linda Elsegood: What can I say? What an amazing interview. Thank you so much, Diane, for sharing

Diane:  Yes. Are there any other questions that you would like addressed Linda?

Linda Elsegood: I'm going to ask is if you can write an article for our newsletter.

Diane: Yes. Um, I'll try my best. I, I'm not much into writing these days, but, um, I'll give it my best shot for you because it's worth it.

This medication low dose naltrexone is like a miracle for some people. It doesn't have harmful side effects. It may not work for everyone, but no medication does. Um, I applied you and your charity and the work you've done over the years to make this, um, more well known out in the world. And I attended for people listening.

I attended the LDN conference near Chicago in 2013. Because I was taking the medication and I wanted to, to go and hear from experts. It was well worth the time and money to attend. So if anyone wants to get more information, I encourage them to order the CD of the conferences that are available. Um, pays a small fee to listen to them online, do the streaming site.

Um, it's just, people call it a miracle drug. It's not really a miracle, but for some that are sick, it can seem like a miracle. Um, I find it an answer to a prayer that I found it when I did. And I'm so happy that it was available to me and I could find a doctor to prescribe it. Um, it has many health benefits, side effect benefits that people have experienced.

No more allergies symptoms after they started taking LDN for, uh, an autoimmune disease. Um, no more flu maybe or no more sinus infections, many, many different things are beneficial from taking this medication what's even better is longterm usage. There are no harmful side effects at this low dosage. And. So I just strongly encourage people that have an autoimmune illness of any kind to look at it as either an alternative treatment or something to take in conjunction with your other treatments.

Um, more information is becoming known through research. Um, hopefully, it will become more widespread with the doctors. It is up to us, the patient. To make our doctors aware of the medication and the uses for it and get them on board to prescribe it for their patients. So I encourage people to do that. Um, Julia halts, um, Teleseminars via phone for people that want to go to their doctor and talk about taking the low dose naltrexone and she'll have helpful articles and papers that you can print out and take to your doctor to help educate them.

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

 

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

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

Diane from the US shares his LDN story she takes for multiple sclerosis. 

She was 34 when she first got diagnosed with MS. She has trouble with vision that got progressively worse and had balance issues and fatigue.

She heard about LDN on the internet and decided to give it a try.  She has taken LDN since 2010 and had mild side affects with sleeping.

She found a lot of improvements with fatigue and balance. Her quality of life improved and she was able to do daily task again.

To listen to the full interview play the video.

Any questions or comments you may have, please email us at Contact@ldnresearchtrust.org. I look forward to hearing from you. 

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

Diane from Canada shares her Low Dose Naltrexone (LDN) and Multiple Sclerosis story.

I was very active socially and at work. I was actually a hotel sales manager, and that kept me on the road quite a bit. So I was very active.

One day, in a meeting at work,  I was making some notes, and everything came up as scribble.

I couldn't write my name. I couldn't spell D I A N E period. So I immediately went off to the hospital. I was seeing the Neurologist beforehand because I had one night double vision in my eyes, and they were doing some testing on me.

Anyways, I went to the hospital and they diagnosed me with Multiple Sclerosis. It was devastating. He sent me home and told me to come back and see him if any changes happened.

So, all of a sudden I couldn't lift my right leg and my speech was totally slurred. So my mom rushed me back to the hospital, and then I hadn't eaten anything but I was throwing up, I shook the bed, and I throw up, and I was doing this for a full day until the point where they were saying to my mother that I would never make it for the night.

And  by the morning, everything just settled down. My symptoms were still the same so I was there for a week. When they sent me home, they said I would have to order a wheelchair for me.

So I went home. We're a Christian family so my mother took me to the church. The missionaries prayed over me, and they were there for a few hours while I forget I had this really weird feeling afterwards.

The following week I left from this whole wheelchair-bound and going back to work in the hotel and being active.

And 14 years later I kept falling. I had really pushed myself to the max. And one day I tripped on the concrete and bang my back, my spine against this concrete wall and then thereafter I found I couldn't keep my balance and I got a call on my cell phone. I had a muscle spasm that lasted three weeks so I was bedridden.

Doctors took me off work. So I've been off work since 2001.

Because I am a computer savvy, I went on to the MS Resource Centre, and I was reading up different things and I found about Low Dose Naltrexone (LDN). So I looked further into it and then I noticed they had a pharmacy in Toronto.

And so he wrote me the prescription. That was November 2010.

I have been ok. I had to use a walker outside and inside and got a scooter now. And then I would say January, I was able to go upstairs.

I went upstairs, went to bed. In the morning when I woke up, I opened the door and looked, and there was no walker. The walker was all the way down to the entrance.

And I got up and started to walk. I was so happy. It has given me a little bit of strength in my mind. I have had problems with my bladder. My bladder is totally controlled and I don't take any bladder medications.

Fatigue is still there. I didn't have side effects from LDN except that I couldn't sleep right.

Summary from Diane's interview. Listen to the video for the full story.

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

Linda Elsegood: Today. We're joined by Diana from United Kingdom who takes LDN for primary progressive MS. Thanks for joining me, Diana.

Diana: Okay.

Linda Elsegood: Could you tell us when you first noticed that there was something wrong with you?

Diana: Yes, it was January 2010. I had gone to pick my daughter up from, uh, from the airport. My husband had driven, I was in the passenger seat, and I went to get out, and my left leg wouldn't move properly.

And I thought. It's a crime or something where it started dragging. Um, and it sort of didn't really recover much. Um, so I'll store a doctor who said, I need to see a physio. And I saw the physio who said, this is not for me. It's neurological, which was good that he sort of spotted that. So it was about. February 2010, when I saw a neurologist whose aim said, right, we're going to give you some, an MMR MRI, which they did from my waist down. And I come back, and they said they couldn't see anything. I was still having problems.

So, um, then I went and saw another. A neurologist who's at the same hospital who said, right, we're going to give you another MRI, which they did from the neck down.

And nothing really showed set for the usual wear and tore on the back. And then they said, no, you need another MRI, which was on the brain. And that's when they said, Oh, you've got lesions on your brain. And I've got the letters telling me I had the million station, which I'd not heard of myelination yet.

Thank you. And, um, obviously they said, Oh, well, that's MS. Multiple sclerosis. And I was like. It's really weird. Cause I didn't know about it, but you talk to everybody else. And I do as soon as they say MS. Um, so then they, um, said to Cruz it, we need to give you a, a lumber punch. So this is by now June 2010.

So I had around with punch, and they said, yes, it's definitely MS. And then they asked me about the history previous to, to, you know, um, my diagnosis. And it turned out that I possibly had it for years because back in 1982. I was having problems where I was like, told me I had temporal lobe, epilepsy.

I never had a fit, but I used to, um, Get these really weird sensations where I couldn't speak properly, and my stomach would blow. And I couldn't cope. I had two children by then, and I was under the London hospital, neurology hospital up in Holborn, and they told me I temporal lobe epilepsy and put me on phenytoin.

And then I had to come up with that. Cause I fell pregnant with my daughter in 1984 and went on to take her child, which I stayed on for quite a few years. Cause I still was insisting. That's probably what it was. And then I went back in about a couple of years after my daughter was born and saw another person up there who said, Oh no, you've got stomach migraine.

Come straight off the Tegreto. So I did. And between 86 I had a few episodes of, um, this, this sensation where, uh, I couldn't cope my, uh, Functioning my eyes go funny. My words were slow and everything. And because I just thought of, they've told me what it is.

I'm not going back down that route. I just put up with it, but it was every so many months. It wasn't all the time until 2010. Obviously when this thing with my leg happened, and I was getting the weird sensations where it felt like I was having. Bits of Woodward attaching themselves to me. And I was having running water was all running down my leg and my, my feet as they still are now totally numb.

And he just carried on from there. Really. And so they, first of all, they said, I had relapsing-remitting, MS. They put me on Gabapentin and, um, But every time I went back, that's what they told me the first time it was relapsing-remitting. And then when I went back and thought and urologist, I think it was about three months later, they said, no, you're not relapsing-remitting.

Cause it hadn't gone away. Your primary progressive. And then I decided, they said that I should take this Rebif, you know, where you inject yourself, which I. So, well, if it's going to help, I will try anything. I don't like this. This is awful. Or, cause I couldn't was beginning to not function. I put grandchildren.

And so I did the Rebif. I did it for two weeks. It was terrible. I was so ill on it. Plus the fact I bruised everywhere, but I just had, they said you might get flu-like symptoms. And that's what I constantly had. The whole two weeks, I was really ill. I said I'm not doing that. And then I said, well, you don't.

And then when I went back again, she said, we shouldn't have been put on it because you've got primary progressive MS. And it's not going to help anyway. So she shrugged us older by then. I'd met up with some other MSP people. And one of them said to me, Have you heard of LDN? I said, Nope. What is it? She said I take it.

I found it very beneficial. I, once again, I went to my doctor who said, no, you can't have it because it's not licensed here. So I said, well, I'm going to have it. She gets it. So I pay for it from Dixon's. Is it Dickenson's the chemist in Scotland? Yeah. And, um, From that day. Uh, I can't, uh, I still have my moment, obviously.

I'm still constantly got this, uh, with my legs, numb and date, and I can't walk very far, but it's allowed me to keep working, and I do work three days a week. I teach adults. Um, with, uh, Mental illness and that it, but I can get up and I can do my job three days a week. And, uh, being able to look after my grandchildren, the only thing I will say I did, um, uh, I started, um, I started off at 1.5, and I was on three milligrams.

I was finding that I was having really bad episodes. Um, if I was taking it every day, I don't know if this makes sense to anybody. So I, I cut it down, that what I do now, I take, and also I better, if I take it in the morning, I've been doing little tests on myself, and I found that what has worked for me now, I take one every other day at seven o'clock in the morning, three milligrams.

And that has worked for me. Better than if I was taking it every day. Um, but, and, uh, I, I don't take anything else now because I've also gone. I don't know if this is simply through this, but I've also gone down the homoeopathic home route. So I only take Gabapentin and LDN now. And, um, Touchwood feeling a lot better than I have done for ages.

Um, in myself, my MS. I still struggle. I couldn't say I could. I still do. I use the stick. Um, and I couldn't walk from one into my high street to the other. I haven't, I can only do one shop at a time, but mentally and more focused on. I do feel this is the inner ODM. And I'll tell you why as well because I did come off its two weeks because I wasn't, well, I had a virus and all, so I wasn't functioning very well.

I come off of it, and I felt the fatigue was terrible. And the, so I do feel as soon as I went back on it, the fatigue is a lot better, a lot better.

Linda Elsegood: Well, that's a good result.

Diana: It is a good result. And, um, And the other friend that takes it to sort of at my stage a little bit further on with RMS, actually, she's a bit older than me.

And she said it's a longer, she, she also swears by it. And, uh, she wouldn't, she only takes that and has a painting and a couple of other things she's taken, but I don't know what they are, but for her. Um, you know, I'm glad I found it, and I've recommended it to other people.

Linda Elsegood: I was a very good story.

Diana: Oh yeah. Um, I just wish that all those years ago that maybe somebody had, I don't know because there are no cure forms. There's no answer. They don't know what the cause is. So I don't know. I don't know where it Roy, where, but if there is something that LDL in that can help here, I'm going to stick with it.

And I sit really in the home. You've passed that on. I think that's a lot of mind over matter. I don't care from feeling better. I don't care. I'll try anything.

Linda Elsegood: What would you say to other people with primary progressive ms. Who is thinking of trying

Diana: LDN? Oh yeah, definitely. They've got to try it. I've got to try it.

I mean, my friend gets hers. Her doctor gives her hers. My mom point blank refuses, you know? But then he didn't want to give me LDN cause it was going to cost him 10 pounds a month. So why would he pay for LDN if he doesn't have to? You've got, you know, you've got every right to say, you know, it's not licensed, so we can't give it to you.

Yes, fortunately,

Linda Elsegood: thank you very much for sharing your story with us. I really do appreciate it, Diana.

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.

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

Di from Australia has multiple sclerosis (MS). She started receiving symptoms in 1996, where she had vision problems, stress of her sick mother could have potentially played a part. Di had blurred vision in one eye. She was gradually diagnosed with optic neuritis, which she started taking steroids. For the next 17 years she felt rather well with no symptoms. In the year of 2005, Di had noticed problems with walking. Where she had progressed to secondary progressive multiple sclerosis. Symptoms include tingling and facial numbness, pins and needles, as well as awkwardness in her right side and right leg.

Di was prescribed with Low Dose Naltrexone (LDN) three years ago, she started noticing changes after one month. Recent symptoms included urinary problems. The tingling, the pain, the needles, and numbness all resolved, where she now feels more stabilized.

Overall, Di recommends Low Dose Naltrexone (LDN) and found our website helpful when researching. 

Please play the video to listen to the full story. 

Any questions or comments you may have, please contact us.

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

Derek from England shares their Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Derek first noticed his Multiple Sclerosis (MS) symptoms in 2001 when he had a lot of pain his left leg meaning he had developed a serious limp. He wasn’t diagnosed until a year after, when his neurologist informed him that he probably had been undiagnosed with MS for over 20 years.

Derek’s fatigue began to settle in but luckily he came across Low Dose Naltrexone (LDN) swiftly meaning his symptoms didn’t develop much further. He recommends LDN thoroughly to all those who are intrigued.

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

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

Denny from England shares her experience of LDN for multiple sclerosis.

She was diagnosed in 98 after a car crash where they found scars on her brain. She first heard about LDN through facebook groups and she decided to give it a try, before LDN she would sleep all day.

She felt like her life was getting stripped away. After taking LDN her life has improved, she is now able to stay awake and work on a novel.

 

To listen to the full interview play the video.

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

Denise - US: Behçet's Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today we are joined by Denise from the United States who's a holistic health practitioner. Denise and her daughter both take LDN for Behçet's Disease. Thanks for joining us, Denise. 

Denise: Thank you for having me. 

Linda Elsegood: First of all, would you like to tell us about your story with LDN? 

Denise: It actually started back in 2008. Well, it started before then, but I was unable to find a doctor who was willing to treat my symptoms until 2008. Back in the late eighties, I was diagnosed at Duke Medical Center here in the United States, as having chronic fatigue syndrome. And at that time they just said, well, go home, there's nothing we can do for you. I was in high school. I was exhausted. I was aching all over. I had mild fevers that would kind of come and go. I was not myself. I couldn't remember things. My grades were falling. It was very unhelpful to be told, well, we know you have something, but we can't help you. So I would just go to school. I would drag myself there. I would get through my day as best I could. I tried explaining to my teachers what was going on, that I didn't understand where it came from, but that I had chronic fatigue and that meant more than just being tired all the time. That it made it really hard to recall information.

So as I said, my grades started dropping. I was doing quite poorly in high school. In fact, I had a counsellor in high school when I went to look at colleges who said, well, you know, I wouldn't look too terribly hard, your grades aren't very good. And I was very disheartened because I had always wanted to work in medicine and. So I did the best that I could. My mom started taking over my chores so that I didn't have to do as much around the house. She didn't ride me as hard about my grades because she understood that I had a doctor's note that said something is wrong with me, but we can't do anything.

And I slept most of my free time. I would come home from school, I would eat something, and I would go to sleep, and I'd wake up the next morning, and it was time to go to school again. That went on for years, and in around 2008, I was able to find a doctor, Dr Webster who - believe it or not - I found his name because he was a doctor that Suzanne Somers had worked with. And I had read one of her books. And I thought, well, if there's somebody out there who's willing to listen, I'm willing to give him a try, and I met with him. He was an ER doctor who was now working in his own practice, and he was very familiar with chronic fatigue syndrome.

At that time, I was only familiar with allopathic or traditional medicine and didn't have any experience with anything outside of that, anything nontraditional. So he started doing some tests on me, and looking at my energy levels, and just doing some kind of things that at the time I thought were very odd. But I went, hey, you know, this guy says he can help me, so I'm going to give it a try. And then he wrote out a couple of prescriptions, and he said, go take these, and I'll see you back in a couple of months, and we'll see how you're doing. So I went to have them filled. Well first I took them to a regular pharmacy, and they couldn't fill it. And I thought, Oh boy, what is this? And they pointed me to a compounding pharmacy. I wasn't even very familiar with them at that point. And they filled it, and they kind of had that look on their face that says, Oh dear, we see something's really wrong with you, and you're going to take this medicine, and you're probably going to have to take it for the rest of your life. And that kind of scared me because I hadn't had any experience with taking something my whole life because I thought that's just something reserved for the very, very sick or those who are very advanced in age. And it felt very frightening to me too, to be in my twenties and be told I was going to be on something possibly for the rest of my life.

But I had my prescription filled, and I took it just like they said. And I started feeling better, but not right away. It took some time for me, and unfortunately, by the time I started feeling better, that doctor moved to another state. So I had a large lapse in taking the LDN because I couldn't find another doctor who would prescribe it.

They didn't know what it was. They weren't willing to go on the fact that I had taken it in the past. 

So I went for several years without taking it, and that was a huge uphill battle at that point. I could feel what it had done for me, even though at the time it didn't feel dramatic. It wasn't like an overnight, where you take this pill and the next day you're all better. It was a gradual kind of thing. But once it was gone, I really noticed it. I was able to find another doctor about a year and a half ago who allowed me to go back on it. And I have been so blessed by this particular substance, low dose naltrexone. It has really enabled me to live a more normal life.

I'm a mother of five kids. I am a holistic health practitioner. I have a concierge service. I'm a mom and I do a lot of reading and research, and when I'm able to get my medicine as I have been, I can retain information. I feel like myself, again, I know what's going on with my body, I understand better, I feel I'm a lot more in tune, I sleep better, I've been able to cut my asthma medication in half without having any side effects. 

I was diagnosed with dry eye, and when I started taking LDN again, after a couple of months, I noticed that was better. I use eye drops, just a regular over-the-counter kind of a tear replacement once in the morning, and that's it. My eyes stay fine through the rest of the day. It's really perfect. I have noticed my interleukin six markers have come hugely down. It has been wonderful. The inflammation in my body has been decreased to the point that I don't think most people would even know that I have chronic fatigue syndrome because it's in remission. I can stay awake all day long. I no longer need to take naps. It has really been hugely beneficial to my family and me.

Linda Elsegood: Well, that is absolutely great. You were telling me beforehand that it was difficult to get LDN prescribed for your daughter. How old was she when she got sick? 

Denise: Let's see. She's 14 now, and I guess it started when she was around 10 or 11, with the onset of Behçet's Disease. There are symptoms with it that are unpleasant and uncomfortable to talk about, quite honestly. I presented with a lot of mouth sores, ulcerations that were quite painful, and they looked like lesions in my mouth, and they would open up and bleed, and I would have recurrences of these.

I mean, we're talking on your tongue, on your gums. In your cheeks, upper and lower gums and it just made it incredibly painful to eat. And my dad had that, and when I was a kid, I remember he used to use silver nitrate sticks, and we'd go to the dentist, and the dentist would just take a silver nitrate stick - if you can imagine putting that poison in your mouth today, right? He would just burn them off,  and that brought such relief because these alterations would go away. 

Unfortunately with Behçet's Disease, there are other ulcerations that can occur,  such as in the genital area. So it's very difficult for kids to talk about that - if all of a sudden it hurts when they go to use the restroom - they don't want to tell a teacher or their parents. They don't even want to tell their doctor about it because they don't know what it is. It can be very frightening. Well, my daughter presented with those ulcerations, as opposed to having them in her mouth She would get a few mouth sores, but her main area where she was bothered was in the genital region, and none of our doctors believed that they knew what we had, and they kind of went, well, we can test these ulcers. Testing them means taking a sterile Q-tip and putting it in the painful ulceration to get a sample, and trying to take a child who was prepubescent, and not accustomed to having their doctor look in that particular area of their body, was humiliating for her. And it was very hard for me as her mom, even though I understood that they had to, as a process of exclusion, rather than going, Oh, we know what this is. First, they say, well, it's not—the X, Y, or Z. So they had to rule things out, and it was really hard to look at her and tell her this is for her own good when I knew it was very, very painful for her.

She also presented with joint pain, which is very, very common. I myself also have fibromyalgia, which is a kind of a pain syndrome throughout the body. So I understood when she said her fingers are really stiff. It would become very difficult for her to be able to write. She's a prolific writer and very gifted, but holding the pen would hurt after just a short period of time because of the inflammation that was going on within her joints. It’s one of the problems of Behçet's Disease. They tested, they kept saying, we don't know what this is. They would send off samples to various labs around the state, and everybody said, we don't know what this is. 

They ended up putting her on steroids. She was on prednisone for a couple of months, which is not pleasant. It created anxiety and sleeplessness, and problems. That was just really uncomfortable for her. It was uncomfortable as her mom, just to watch that. And I knew that it was an immune system dysfunction. And I knew from my own research that the only thing that I could find besides vitamin D, which we found to be exceptionally low in her at that point, was the LDN. 

The path that I wanted to at least try was LDN, knowing that there were little to no side effects with LDN,. I thought we really didn't have a lot to lose, and I did not like the idea of her being constantly on antibiotics because of course, if the doctor didn't know what it was, they kept throwing out steroids and antibiotics, and she kept having these problems, and I thought, she can't live like this. You just physically can't, your body can't take that. So I was able to find a friend of mine who is a paediatrician, and she specializes in functional medicine. And even then, it took me over two years of having my daughter go through these painful cycles of ulcerations before I could get that doctor whom I knew personally to write her a prescription for LDN. I had to just pretty much beg her. I said, look, I know you've written it for other kids because she also happens to work with a lot of kids on the autism spectrum, and I was trying to convince her, and this was before the book, so I was trying to convince her that, hey. I can't tell you exactly how it works, but I believe in my heart that this works on a really deep level of the immune system and allows the body to help itself.

And can we please try this? Because I can't keep watching my child deteriorate. And it was only after persistence. And I mean, I would show up at her office on a weekly basis, and I would say, you're going to keep seeing me until you at least let us try this. We got my daughter on it. She's been on it now just about a year, and it took probably about four months for her to find the full effect of it. It was so amazing that at about ten months into it, my daughter had not had any ulcerations anywhere. Her joint pain was gone. She was able to ride a bicycle and run and play and function as all of her friends. 

She was feeling so good that she decided to go off of the LDN because she thought she was cured. Unfortunately, she didn't tell her mother had. I had no idea this was going on. About four weeks later, the ulcerations started again, and she didn't tell me right away, but waited a couple of weeks and then she came to me, and she said, something's wrong. It's come back. And I, at that point was confused, and said, wait a minute, you're taking your medicine, right? Oh yeah, I'm taking it, she said, so then I went to her room and counted the little capsules. And I found out she had stopped taking it, and I said, honey, you know, why did you stop taking it? And she said I thought I was cured because I felt normal. I felt like myself. I could do things like everybody else. And once that happened to her, that was a huge wake-up call. And so she has been on it and is back on it. And does not ever plan to go off of it again, because it allowed her to have a normal life and to not be looked at with that kind of pity book. You know, people mean well, but they give you this look that kind of goes, oh, I feel so sorry for you. And while that's kind, it's not helpful. It was tough getting the medicine for her, but now that she is on it, we are not going back, either one of us, because it has made that big of a difference in our lives, and it's so incredibly inexpensive. It's amazing. It's like a dollar a day for each of us, which is almost nothing compared to the quality of life that you can have. 

I understand that not everybody is going to experience the same things, and for some people, it's going to take more time than others. And some people might not stay with it long enough to realize the full potential. But we were very blessed and very lucky that we were able to find out about it first of all, and that we were able to obtain it, and that it worked. And it worked really well. I think of it kind of like when somebody has braces on their teeth and their teeth are beautiful when they come off, but if you don't wear your retainer, your teeth will go right back. So I kind of likened LDN to wearing your retainer. If you don't take it, you can end up going back to the state in which you were prior to taking it. So we are very grateful to it. 

Linda Elsegood: Well, that's wonderful. And you're, you're both in remission, correct; and how many years have you been taking it?

Denise: Currently, yes. It has been wonderful. I've been back on it now for almost two years. So I had gone a very long time without it. And those years were really difficult. It was almost worse than the years before I knew about it because I knew it could be helpful to me and I couldn't get it, as opposed to before when I didn't know that there was anything out there that could be helpful.

So even though it's only been a short time that I've been back on it, comparatively speaking, I have noticed a huge difference in the quality of my life. I don't take naps. I have fewer - you know, I'm only 45 - but I have fewer “senior moments”. I can tend to remember what I'm talking about and not get lost. You know, that brain fog where people kind of look at you and you have to stop and ask them, what did I just say? 

For me, that's been really a good thing because nobody wants to listen to a practitioner or take advice from somebody who can't remember the sentence they said two sentences ago. So it's been a real godsend for my daughter and for me. I'm actually hoping to get my sister on it in the very near future. She does not live near us, so I can't get her to the same doctor where we go. But I'm giving her the information because she has recently been diagnosed with lupus, and I think that she too would be helped remarkably with LDN. 

Linda Elsegood: Well, maybe we can interview your sister. 

Denise: I hope so. 

Linda Elsegood: Thank you for sharing your experience with this. We really do appreciate it.

Denise: Well, thank you for asking me, and thank you again for making this book available for opening our eyes to this; and for really giving fabulous science to it so that we're not walking around talking to doctors and having them look at us like we're nuts; that we can actually point to various chapters and things and say, look, read this. You know, it makes it so much easier to be able to obtain it when you can prove to somebody that it's real and it works, and it's not harmful. So thank you.

Linda Elsegood: 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.