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Linda Elsegood: Today my guest is pharmacist Stephen Dickon who, as you probably all know if you're in the UK or in Europe, even. He has been working with LDN since 2005. So when you started, how many patients would you say were using LDN at that time?
Stephen Dickson BSC (Hons): I think at the time we had a number of patients who came from a private medical clinic that was solely working with MS patients. So it probably started off in the tens and quickly became the hundreds. And as we know, it's now in the tens of thousands.
Linda Elsegood: and it's come on amazingly, hasn't it. And what, in your experience, would you say the outcomes have been for patients using LDN, not just for autoimmune diseases, but cancers, pain, etc.
Stephen Dickson BSC (Hons): That's a very wide topic and starting off we were very sceptical of the LDN. This is going back a long time though. But from our perspective, we were really looking initially just at the MS patients. And it wasn't long actually until after we started using it, maybe about a year, after we'd started dispensing it in large quantities until we started to notice that the difference that some patients receive from it, were really all standard therapies had failed, and do bare in mind that we were involved in and all sorts of other unusual MS treatments at the time as well. LDN stood out as something that seemed to have a consistent response to MS patients. For at least half to more than that and seem to get stabilization of disease and that improvement in some of their symptoms. As we all know, MS has such a wide range of symptoms. It's very hard to quantify specifically, and one of the first things we started asking people and looking at, years ago, was bladder control with MS and you know, that was, there was a very small, study done on that and it seemed to show that the number of times people, you need to sort of ease themselves overnight improved. And that was way back in sort of 2005, 2008. So that certainly gives us an awful lot of food for thought and a bit of confidence that LDN is definitely doing something there. We've come a long, long way from then because of all of the different bits of research that have been done, and all the conditions have tried it and conditions, as you said, everything from MS to Hashimoto's disease and most recently things like cancer.
And you know, the differences in some people are quite remarkable and what we've been very lucky with in the last few years, there's been, we've had some other researchers who are doing the primary work on LDN, able to start to elucidate really how that's working and what it does. So if, from a personal perspective we have patients who LDN does absolutely nothing for and we don't know, but we have chronic fatigue patients, for example, who have been debilitated, unable to go to work for a year as it sometimes is a very short time after starting LDN are right back to 75% and are back at work and they report that the only thing we've done differently in that time is LDN. And now as we know, it doesn't seem to work for everybody. And LDN doesn't seem to be a panacea for, to get everyone back to 100% to where they were. But certainly looking at the anti-inflammatory effects that have been looked at carefully over the last few years, it certainly points us in a very clear direction of how LDN is helping these patients.
Linda Elsegood: From prescribers that I've interviewed, I would say virtually all of them have said that it's helped 80% plus of patients that they've prescribed LDN for, I was just trying to think about how many conditions we've got now. Was it 240 conditions, something like that. And
I know I've been sent another one this week, which was really interesting. So although we know that no drug works for everybody and even those people that LDN works for, as you said, they can't get back to where they were 100%, but it is certainly something worth trying, isn't it? If you have a, a condition that LDN could possibly help,
Stephen Dickson BSC (Hons): I certainly think the issue of a patient who has one of these conditions where all other treatments have failed, or have been suboptimal, and you've done the research yourself. I mean, going to the LDN research trust website, for example. Do you know if it's something that you personally think you want to try, then I don't think any obstacles should be put in your way? And so that's certainly what we've been focusing on for the last number of years, is just to get a stable and safe supply chain.
The correct thing to the correct person in there with the least amount of hassle in the safest possible way. That's one of our concerns over the last few years has been people buying things on the internet. So people buying LDN capsules from Amazon or eBay and I was looking yesterday, and there were still, there are some capsules listed, which is, you know, completely terrifying and general that is, Drug interactions that are problems. And I think that you do need to worry about, and some people so, so certainly that, that second term, but tend to, but we are striving, has been to make sure that they're supplying to patients in the UK, EU, was in a stable and sensible way.
Linda Elsegood: and the other thing that isn't recommended is making your own LDN.
I mean, so many people say, Oh, I can buy 50-milligram tablets off the internet and mix my own LDN, and it's going to be pennies rather than pounds. Now, can you explain the potential problems people could have by making it themselves?
Stephen Dickson BSC (Hons): I can give you a very good example because the whole of the European Union has signed up to something called the falsified medicines directorate.
And starting from February of next year, every single medicine in the whole of the European Union and the UK, and we will continue after Brexit has to have a specific CD barcode or 2D barcode, which contains information about where it was made, the exact specific pack and the whole journey that that package has had through the system, so right from the manufacturer, whoever that is in the world, right to the patient, it’s been barcode scanned for the entire journey. And the reason why this is being done and why the government is investing millions upon millions into this is this problem of falsified medicines.
Most of the things that you can buy on the internet, most of the medicine you can buy on the internet don't require a prescription, are coming from non-regulated countries. And in fact, most of those medicines, not only are coming from non-regulated countries, you know, the odds are they're not real.
And this is something we see all the time, that people have thought things that are not only potentially not exactly what they're supposed to be, but maybe contain other things that are harmful. And this is coming from someone - If someone's unscrupulous enough to sell you a prescription medicine over the internet without any sort of consultation or any legal documentation, then they will be willing to sell you anything.
So then I'm fully aware that there must be people who have been lucky enough to buy naltrexone tablets and have been lucky enough to not had anything bad happen, but I would say that from each time you buy it, you're taking your life in your hands because you don't know what it is.
It might come in the same packaging, but it’s very easy to photograph a box and photocopy it and have artificial packaging, you can do it in 24 hours. Again, it's fairly easy to buy tabletting machines there are all sorts of herbal medicine, and supplement companies have spare time,
The whole thing, our concern about that is: It's the supply chain, you know, also the stability of the end solution if you were to do it, even if it did get the right thing. We have concerns about that because we know from experience and using tablets that different excipients in those tablets have a different effect and how soluble and how stable the product is. And we've had ten years of experience with that, so we would never recommend anybody does it themselves just to save a couple of pounds. It's not. It's not worth it.
Linda Elsegood: I mean, the supply chain that you use, you make sure it's a high-quality product that you use, that it's made compliantly and it's fully tested. I mean that ticks all the boxes, doesn't it?
Stephen Dickson BSC (Hons): And I think that that's been, we had a recent inspection by a regulator. I think we were quite surprised, by the lengths that we go to make sure that all of these medicines, I mean, not surprised, but we've gone way above and beyond what is expected from the law because there are so many risks in this volume of supplying an unlicensed special. And so from our perspective, we have even gone as far as to do, that's the devotee trial in our liquid formulation, which shows that we can have unopened a 12-month expiry. And that gives us great confidence that what we're doing is right, and it's going to work in the long term. and there are lots of, on a recent case, we had someone who went to a, just a local pharmacy who ordered LDN capsules from wherever it was that they get them from.
And the capsules turned up with basically nothing in them. We sent them off for testing, and there wasn't enough material inside the capsules to actually be able to test it, to find it if it was what it was supposed to.
Stephen Dickson BSC (Hons): I've seen. So it's very, I mean, it's still, the UK is far better than other countries generally. In this sort of way, certainly in the EU, the regulation is tighter, and then you get into other parts of Eurasia. But. From our perspective and supply chain is key. You want to make sure that the thing you're getting each time is the same as the thing you got last time, I see what know whether it works,
Linda Elsegood: but also if people were to mix their own, I mean, how dangerous is that?
As in bugs or germs growing in it with you constantly opening it, closing it, and people think that. You know, I only take point whatever of LDN, and this one 50 milligram tablet is going to last me a month. What would you say to somebody who wanted to store and keep opening the LDN daily for a month in the fridge?
Stephen Dickson BSC (Hons): I mean, there are a few problems. The first problem I would see is, let's see. Some of the recipes that I've seen online posted in these forums call for a distilled or deionized water. Now, if you do that to water and you take the ions out of it, number one, the naltrexone molecule can’t actually dissolve because it needs an ionic component to them in order for the naltrexone component to come out. So that's, that's the first problem that if you follow some of the formulas we've seen online. Actually, it won't work. You will be able to dissolve the naltrexone. Secondly, if you're just doing it in water, there are components of these tablets that you're buying, even if you are buying the right thing, even if by some chance you've happened upon the correct medicine, and that won't correctly dissolve in water and leave will potentially have adsorbed some of the naltrexone molecules onto them.
So that's the first two problems that you know. You might not be able to get it to dissolve. If you're following the formula and actually even then you're unlikely to be able to create a solution that's going to be stable all the way through, but then you have the problem as you so correctly said there, opening it every day, exposing it to air, exposing it to whatever happened when you put the syringe in or you poured some out into a spoon, and then going back into the water. Now you wouldn't open the carton of orange juice and then open every day and keep it for a month and expect it to be good at the end.
It's exactly the same as this. You wouldn't expect you, diet Coke or something to be good after a month, and then that's the same thing, but this, if you make that with one tablet and you open every day, and you introduce bacteria from the air or from the syringe or from the spoon, It's not necessarily going to be terribly safe by the end of the month. Why is it because the bacteria are broken down in the, so I don't think people would really think it through. And you see a lot of posts and forums for, people think this, you know, think things are a great idea, but they haven't quite thought through the whole sort of the implication.
And then that's not really their job to do that. That's why they are pharmacists and doctors.
Linda Elsegood: I know that you are always looking into other things that people can take alongside LDN. Now, you have had some interesting, different medications that could be used alongside LDN to help with, say, MS over the last couple of years. So, you know, if people wanted to introduce something else, that is also, alternative, different, beneficial, I don't know what to call it. Okay. What is it that you as a pharmacy are telling people that you know, potentially might work for them and that works very well with LDN?
Stephen Dickson BSC (Hons): There are three that, I mean, as you said, they've been quite a number of things come and go, and these tend to come from the experience that the LDN research trust and conferences.
So a couple of years ago, one of the most interesting things I found was something called low dose dextromethorphan we call it LDXN. Then it seems to work by blocking a different inflammatory pathway to LDN. No, I know that I think it's Charles Youngers is doing research into that at the moment.
So we have quite a number of patients who are likely to experience some additional benefits on LDXN which is really clearly interesting because again, it's a molecule which works differently at high dose disorders. And the second thing, which is more specific to remyelination diseases like MS, is something called Clemastine. So Clemastine is a really old fashioned anti-histamines, which had fallen out of use completely. And there was a study published in the British Medical Journal showing that you are able to demonstrate remyelination and after treatment with Clemastine and using it in the animal model. Now, this is something which no drug, none, not even any of the MS drugs which are licensed have been able to show.
So this was incredibly interesting to us and in fact, the results we've had from a number of patients who have started Clemastine with us as long as, well as LDN or instead of LDN being in work have been absolutely remarkable. And there have been patients who have gained full control of limbs that they haven't had for a long thing, they've been people whose optic neuritis, that's, that's the inflammatory marker for the eye, have improved remarkably so. So that's been quite something that.
And it seems to be quite remarkable in a number of people, a great number of people may actually have been able to reduce the opiates and then be able to start LDN. And that's not to talk about ultra-low-dose LDN, I think that's probably a topic for another day.
Linda Elsegood: Well, we’ve run out of time, but it's been wonderful to catch up with you, and I'm sure our listeners are really happy to see what else is happening in the LDN world. So we'll have you back next year and can't wait for the next update. Thank you.
Stephen Dickson BSC (Hons): Thank you, Linda.
Linda Elsegood: This show is sponsored by Dickson's chemist, who are the experts in LDN and associated treatments in the UK. Dickson's Chemist, the most cost-effective for LDN in all forms within the UK and Europe, maintaining safety standards far in excess of what is required. Why would you choose to get your LDN from anywhere else?
Cal 01414 046545 today to speak to the LDN experts.
Any questions will comment you may have please email me and Linda@ldnrt.org I look forward to hearing from you. Thank you for joining us today, we really appreciate your company. Until next time, stay safe and keep well.