LDN Video Interviews and Presentations

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

Linda Elsegood: Hi I would like to introduce Ray from England who takes LDN for Multiple Sclerosis and Fibromyalgia. Thank you for joining me Ray.

Ray: Thanks very much.

Linda Elsegood: Could you tell me when you first started to notice symptoms, which led to your diagnosis?

Ray: I collapsed in 2009 but about three years while I was working before I got diagnosed with MS, I noticed always feeling very tired after work and would sleep in the evenings.

And my MS Smith said there are probably developed MS and Fibromyalgia while I was working, but when I collapsed in 2009 that was a definite diagnosis, and that's when my illness eventually kicked in.

Linda Elsegood: What old were you then?

Ray: 41

Linda Elsegood: And how that does impact on your life?

Ray:  Well, I'm lucky that I worked for Honda and I've got a very good pension, and I've got health insurance on my pension, so financially I am ok. I claim some benefits.

It's been just over two years now for me, and I haven't really noticed a great deal apart from the fact that I would try to do things when I'm feeling good and then it would, the fatigue and chronic pain would hit me a day or two days later, and I can deal for a couple of days a week, two weeks. It's just a very unpredictable disease MS and the fibromyalgia with fatigue and chronic pain as well, so it impacts on my life quite a lot at the moment. And I went to the MS centre today because the lord mayor was there and I had to go on an exercise bike, and have my picture taken and I couldn't even lift my leg into the stirrup when I was sat down.

And that was a real eye-opener for me today that I was sat in a chair, and you got these pedals in front of you. It's like an adopted bike and I couldn't lift my legs while sitting down. I mean, I consider myself to be generally,  a lot more able-bodied than most of the people in there because I can walk around and I thought I could bend my legs really well in a seated position trying to get my legs into the bike today.

Linda Elsegood: Well before you heard about LDN, what were your symptoms like at that time?

Ray: I was really ill. I felt like I had really bad flu symptoms feeling generally yucky every day. I was definitely feeling really unwell.

Linda Elsegood: What about pain? What was your pain like at that time?

Ray: That was really bad as well. I've tried several types of medication from my Ms nurse and then eventually got on to Pregabalin which helps neurological pain, and that helped me a lot, but I still had the yucky illness feeling most of the time.

Linda Elsegood: So if you went to score your quality of life on a scale of one to 10,  10 being the best before you started LDN, what would it mean?

Ray: Before I started LDN I would say it was a 4. Now I would say it's about 8 or 9.

Linda Elsegood: That's fantastic! That's really good. So how did you hear about LDN?

Ray: My brother's mother-in-law has got fibromyalgia really bad. She got it for 20 years, and she said to me: " Why don't you try LDN?" I said: " Well, what is that?"

And she gave me the website address, and my doctor was willing to give me a prescription every month and to get my medications and Dickinson's pharmacy in Scotland. The last year, it's being paid for on NHS. So I didn't pay for anything.

Linda Elsegood: That's really good. So when you first started, did you notice any side effects?

Ray: No, I didn't. Not at all.

Linda Elsegood: All right. And how long do you think it took before LDN started to work for you?

Ray: Probably about six months.

Linda Elsegood:  And what did you notice?

Ray: I mean with fibromyalgia, every morning you wake up, you still feel very fatigued.

But that's also the same in MS Still the case now, but I know that after about two hours, I'm okay and I haven't got this yucky flu-like symptom. I haven't got any of that anymore.

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

Ray: I would say: " Do it!"  because we did notes on LDN.  It stimulates the body's endorphins naturally to make you feel a little bit better. It just makes endorphins in your body and I would say to people: "Try it because it's really good. "

Linda Elsegood: Well, thank you very much. Is there anything else you'd like to add before we go?

Ray: Not really. That's all I can say is anybody out there to speak to their doctor, go to the website, print off all the information, show to the doctor and try and get a prescription from your doctor. And then get the LDN, basically.

Linda Elsegood: Thank you for your input.

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.

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

Linda Elsegood: I'd like to introduce Ray from England who takes LDN for Hailey Hailey's disease. Thank you for joining me, Ray.

Ray: Thank you very much for asking.

Linda Elsegood: could you tell us about your Hailey Hailey's disease when you first started to notice symptoms?

Ray: I first started to notice symptoms on my body about seven years ago.

Linda Elsegood: what kind of symptoms?

Ray: I was getting a breakdown at the skin at that time, which was mainly centred around the neck on the left and the right sides. It was blisters. It was becoming infected, and it was rubbing on shirts obviously when I was working as a teacher.

Linda Elsegood: And what did your doctor say? What medications did they give you to help?

Ray: I was prescribed some cream and then some antibiotics. Basically, what was happening was the outbreaks were lasting for about five to six weeks. And then they were going into slight remission, but the breakdown was starting to come back again.

Over a period of time, the outbreaks were getting worse because it was becoming sorer and it was breaking down with more regularity. In 2009, 2010 I got massive eruptions in my groin area and also on my chest under my arms and my neck was really bad.

Linda Elsegood: Was stress a factor that made it worse?

Ray: Stress is a factor. LDN in the UK is off license, and although I had remarkable effects with it and remarkable benefits, I was going to see my consultant this week. I was anxious that she was going to turn around and wash your hands of me as other people have.

So I was mindful of that. A couple of days beforehand I started getting spots of it coming up on my stomach. But I don't think that stress, he's everything. I think is a contributing factor but it's not the sole actual reason for it.

Linda Elsegood: Well, if I can take you back to before you started LDN, how did you go about obtaining a prescription in the first place? How did you hear about LDN?

Ray: I heard about LDN from the self-help group that I'm involved with which is, Hailey Hailey's Disease New Approaches. This was started off by a lady called Lori and Thomas. And there are 70 people involved in that now. We're trying to help each other through this.

One or a few there had LDN prescribed, and I saw that they had it. So started researching it because once I found out what Hailey Hailey disease was, the congenital effect of the calcium pump and that he was hereditary, I started looking into it. I did a vast amount of research and came across the work of Dr. Bernard Bihari. That's how I found out about LDN.

Linda Elsegood: And how long ago was that?

Ray: That was about January this year when I started, I was formally diagnosed with it in October last year.

Linda Elsegood: So when she heard about LDN, and you could see that other people were taking it, what did you do about getting a prescription?

Ray: I had spoken to my GP to see if there was any chance that he would prescribe LDN for me, and he said he couldn't because all the directives that have come from the local commissioning group on prescribing off licensed drugs. I then spoke to my consultant about LDN, and she said that she couldn't do it either. So I wrote to the commissioning group in the UK asking them if it was possible. I had been referred by my consultant for laser treatment on this which I wasn't really keen on because that was just going to affect the skin surface.

It is a cosmetic reconstruction. It wouldn't affect the cause but they refused as well because he didn't fit that criterion. So I wrote to the chief officer of Dudley in the commissioning group and I wrote to him five times. I tried to phone him three times. He wouldn't speak to me, so I knew I was getting absolutely nowhere. My consultant had used LDN in the past and she was quite happy with the research that I'd done and was willing to give it a try. She wrote the request for LDN for me through the hospital board but was rejected by the commissioning group. So I knew that this is going to happen and I knew that wasn't going to get anywhere. I got 5 letters ignored. I went to my GP, and I said:" Look, if I get this myself, would you supervise me?"

And he responded to me that if I got it, I was taking it he would have nothing to do with it, so I felt right Okay. So I stopped all antibiotics in February, all opioid painkillers. So on the 28th of February, I had filled my supply of LDN, and I gradually started to build up from 1,5 mg up to 4,5 mg over a period of time.

I've now been on it for just over a month. I've been on it for five weeks.

Linda Elsegood: You are very kind to offer us a before and after situation which people can see at the end of the interview and it is absolutely amazing.

Ray: I mean, I would go so far as to say that has changed my life. One little thing that people will suffer from it because of the pain and the pain is constant. It's 24 hours a day. You can't sleep, and there are some people that I know who have this on her back.  They can't sleep on their back. Unfortunately, I don't, but he doesn't matter because in the groin chest and armpits, if you move around in bed, which we all do, then the pain of that wakes you up.

So for the period of time, I was getting on average about two and a half hours sleep at night which was not exactly doing me any good either.  I haven't worked since last June because I can't stand in one place very long. I can't sit for very long.

I certainly can't drive because I can't get into driving position. Now what the LDN has done, it's transformed. It's taking the pain. It's healing dramatically. The groin area is slightly improved, not as the neck. But then again,  I'm not expecting it to work as fully in other areas but my underarms, my chest is clear. I'm able to basically live a more normalized life. I'm bathing four times a day. I'm still not ready for going back in front of the classroom for the kids. I think it's important to say that the support that I've had from the group from LDN research trust and from a consultant is giving me hope, optimism and determination to get this thing kicked into touch.

Linda Elsegood: What about your sleeping pattern now?

Ray: Sleeping is more or less normalized. I might wake up once in the middle of the night one for 15, 20 minutes and then I get comfy again and go back to sleep.

Linda Elsegood: And that in itself has an impact on everything, doesn't it? just being able to get your rest and have asleep?

Ray: You wake up in the morning and you know you still got it, it's still sore in areas, but you're actually seeing the thing getting better. It motivates you that something is happening. I may be on it for the rest of my life. I may get a taxi in the future but at least I will know then that I have something that works, something that is helping me, and something that's restoring my quality of life.

Linda Elsegood: Well, that's excellent.

I think you might find it's a drug for life, but because it's not toxic and it's not going to do you any harm, there's no reason why you shouldn't take it.

Well, that is amazing. How about if we in six months time do a follow up to see how you're progressing?

Ray: That's great. I mean, anything I can do to provide information that will help anybody else that's what we'll do. One of the things that I've done at the moment is, I have been recording everything on a daily basis religiously. I've been taking blood pressure measurements because I do suffer from, blood pressure, which is managed but nevertheless, I have got slightly high blood pressure, and there's been no change in blood pressure. It is stable on both sides. I've been noticing the dosage the symptoms, the areas, sleep patterns, mood, appetite and documenting everything that I'd been doing every day.

And honestly, I can say that I have had absolutely no side effects of this. The literature states that you are the best advice to take this st 1,5 mg and go up, after about a two week period by one milligram, so 1,5 mg, 2,5 mg, and then 3 mg. I did it a bit quicker than that and in about three weeks. I suffered no adverse effects from it whatsoever. And it may well be that because I've taken 4,5 mg quite quickly  I will go down to 3 mg and then see you, and will keep on measuring to see what happens after that.

But there are no side effects that I have come across at all. And that in itself is marvellous. I've also taken steps to engage my MP with this method about it being a full license and he has written to the commissioning group. And if he doesn't get any response, then I'm prepared to take it to the secretary of state for health.

Because I feel that the evidence that I have and the images that I have been living proof that this particular medication is invaluable for anybody who has Hailey Hailey disease.

Linda Elsegood: Well, I'll look forward to speaking to you again in six months time. Right?

Ray: Okay. Thank you very much, indeed.

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.

Rai's Mother- England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Rai from England tells her Mothers story about her experience with her Multiple Sclerosis diagnosis. Rai was exasperated with the NHS’s treatment of her mother whose condition was deteriorating rapidly.  Getting nowhere with the NHS neurologist’s or her Mothers doctor Rai did her own research and became interested in Low Dose Naltrexone (LDN).  At this point her Mother’s condition was serious and her quality of life was poor.  Rai tried to get Low Dose Naltrexone from her doctor and he told her that he couldn’t prescribe it. Rai eventually sought Low Dose Naltrexone privately and finally got a prescription for LDN.  

Now, in her own words, Rai says “And I can tell you from somebody that actually watched her for two years without LDN and for two years with LDN there is a drastic difference”.  Rai’s mother is now doing well on LDN and if nobody knew about the diagnosis they would never guess that there was anything wrong with her.

Rachel - Japan: Ankylosing Spondylitis (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Rachel from Japan takes Low Dose Naltrexone (LDN) for ankylosing spondylitis. Rachel was only fourteen years old when she became ill.  Her symptoms were fatigue, spinal pain and many other debilitating things - she was misdiagnosed and treated with drugs that caused further issues. Eventually, after researching for herself, she found Low Dose Naltrexone (LDN) and had significant improvement from day one and things got better as she increased her dose slowly to 3 mg.  Eventually she increased to 4.5 mg and now has mental clarity and energy.  Rachel still has pain on some days due the length of time and the other treatments conventional medicine treated her with.  Her daughter also has the same complaints so Rachel recommended Low Dose Naltrexone to her daughter so that she could take it early on in the disease process so that she doesn’t suffer the same fate as her mother. 

For more information about Low Dose Naltrexone please visit https://ldnresearchtrust.org/

Rachel - England: Parkinson’s Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Rachel from England was diagnosed with Parkinson’s Disease 21 years ago and has been taking Low Dose Naltrexone (LDN) since 2014.  It took ten months to see significant improvement but Rachel says she would recommend Low Dose Naltrexone to other people suffering from Parkinson’s Disease. 

For more information about Low Dose Naltrexone (LDN), including medical professional presentations, patient testimonials and more please visit https://ldnresearchtrust.org/

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

Rachel from England takes Low Dose Naltrexone (LDN) for Chronic Fatigue Syndrome (CFS/ME). She first noticed symptoms in 1990 when she started dropping things and her memory was failing her, this progressed to fatigue and then, in 2003, she lost the use of her left side. For three years she had difficulty getting any diagnosis and then eventually found a doctor who could help.  

The new doctor started Rachel on Low Dose Naltrexone (LDN). Within a month her symptoms went away and she felt that it had completely transformed her life. There was a period when she couldn’t get LDN and her symptoms came back so she searched again and got more prescribed and again she improved quickly. With Low Dose Naltrexone Rachel feels that she can get on with her life, doing all the things she wanted to do which would not have been possible before. Before LDN she said she had no quality of life, and now it is a strong 7 out of 10.

For more information about Low Dose Naltrexone please visit https://ldnresearchtrust.org/

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

Rachel from Australia shares her Multiple Sclerosis (MS) & Low Dose Naltrexone (LDN) Story.

Rachel found out about Low Dose Naltrexone (LDN) on facebook and by conducting her own research. Her GP did not know much about the medication, and her neurologist refused to prescribe it. However, after going to a health clinic in Glasgow, she was given LDN after scans and testing. She started using it in July, last year with no symptoms. Side effects were only felt when the dosage was increased to around 4.5, resulting in a lack of energy. This is where she found out she cannot go above 4.0. The LDN allowed Rachel to sleep and took all the pain she was feeling away.

When asked, Rachel told people “do not contemplate it. Get on Low Dose Naltrexone (LDN) as quick as you can.”

For the full interview, watch the video.

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

Pharmacist Phil Altman, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Phil Altman, Pharm shares his Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Phil Altman is a member of PCCA and IACP for over a decade and a graduate of Massachusetts College of Pharmacy. Compounding since 1997, he is recognised as one of the leading authorities on women’s health issues in Westchester County and beyond. 

Phil’s integrative philosophy is to treat the whole person, providing the most up to date advice on how to achieve optimum nutrition through proper use of nutritional supplements along with herbal and homeopathic remedies.

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

Pharmacist Victor Falah, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Pharmacist Victor Falah in the United States shares his Low DoseNaltrexone.

The first time I heard of LDN was in 1994 trough a patient that came to my pharmacy  with a prescription.

Now we have a hundred new patients a week.

And the majority of them are really very happy. Not everybody is using it for the same purpose.

When we started, we get it for people with HIV and then after that, it tends to be good for Multiple Sclerosis patients. And most of our patients right now really have Multiple Sclerosis.

People with MS are very happy with it.

Some patients can have some type of stomach issues and others insomnia but it will pass after a week or two.

I would like to say to people to give it a try for at least 3 months. If you have any kind of side effects give us a call.

Pharmacist Victor Falah's interview. Listen the YouTube video for the full interview.

Pharmacist Terri Weisenbach, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Pharmacist Terri Weisenbach shares her Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Pharmacist Terri Weisenbach is a partner and vice president of Belmar pharmacy in Colorado, which has been compounding since 1985. They began in hormone replacement therapy yet realised the effectiveness of Low Dose Naltrexone (LDN) a long time ago.

Her abundant knowledge and experience of prescribing LDN has benefited many of her patients in avoiding any potential side-effects of LDN while finding the optimal dose in order to combat the patient’s illness.

Terri Weisenbach’s pharmacy ships to 44 States, covering the majority of the USA. 

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