LDN Video Interviews and Presentations

 

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us. 

Today we're joined by clinical pharmacist Sebastian Dennison from PCCA. Thank you for joining us today Sebastian. 

Thank you so much for having me. Can you tell us about your role in the PCCA and how that involves LDN? 

PCCA is a company that helps compounding pharmacists realize the needs of individual patients by providing education training, as well as, components for compounding everything from equipment to specialized bases to specific bulk active pharmaceutical ingredients AKA drugs so to speak. 

As a clinical pharmacist my role is to consult with both technicians and pharmacists when they're faced with problems that they haven't seen before. PCCA has evolved over the last 40 years of their existence as well as our role as clinical pharmacists. We're now doing a lot more external education events, working with providers and external education providers. The LDN Research Trust is a brilliant organization and because we are the ones who are pharmacists compounding LDN we're getting more and more questions on it. 

In about 2014, 2015 I was given the role of educating a lot of our members on the evolving and emerging uses of naltrexone. It grew from there obviously because as I learned more I got more and more excited about it. I realized that there was a lot more to this fancy little molecule than what we had previously known and we're still learning every day.

What would you say are the main topics that you give when you're educating pharmacists as in conditions? 

I guess I always have to go back to my own understanding of most diseases. I have to understand the underpinnings of the pathophysiology and the drivers of disease before I can understand how any drug or any sort of therapy will have a positive intervention. This goes back to something called structure activity relationships. This is the bread and butter of pharmacy. If we understand how a drug works in a set receptor or receptor families we understand how that drug will impact the disease long term. 

Understanding both the disease pathophysiology and understanding how the drugs work give us insight and so what's changed is as we understand that naltrexone has more and more receptors that it works in and more specifically at this sort of very subtle dosing in the LDN and very low dose world. We understand how it can have differential benefits in these patients and so it used to be in the the late 90s it was MS, fibromyalgia and migraine. It has since turned into so much more. The big ones that I see right now are pain, inflammation, arthritis, fibromyalgia, MS, autoimmune disorders and now we're starting to touch upon things like anti-aging uses, mental health issues, adjunct care to other disease states and you know the big ones. Cancer is becoming huge. Dermatology it's enormous. More recently some new evolving uses that I've been discussing for a couple of years and a couple that I'm really excited to be presenting in the upcoming conference.

We had a fantastic presentation last week. I believe it was from a colleague of yours, Nat Jones, on Dermatology. It was a very good presentation, and we've also had a presentation from you as well. What would you say if a patient or a pharmacist says that they've got a patient who is really skeptical about trying LDN and he's worried what effects it would have on them? People who haven't really done the homework and don't really know the ins and outs of the LDN how would you get the pharmacists to address that?

The part of my role, because it's a clinical role, and ensuring patient safety is a priority, that always goes hand in hand with pharmacy ,but in the compounding world there seems to be this lack of information because we may be new to using many molecules in new and interesting ways. That's part and parcel of what we always do, is we look at safety. We look at information that's available and we also look at side effect profiles. 

There is a saying that you get in pharmacy school, no side effect, no effect. Dosing appropriately for the patient to avoid any side effects and to avoid harm. Those are the two crucial pieces that you have to start with when counseling any patient or any person who's thinking about low dose naltrexone. The scope of health has to be made aware of the safety profile. 

There was a brilliant paper that was published in 2019. The author was Bolton He discusses the side effect profile of this all-inclusive retrospective analysis and they had almost 11,000 plus patients and they were looking at it and saying that the side effect profile is very similar to that of placebo. Which is really an interesting piece because placebo effect is very common. Headache, tinnitus, nausea, vomiting, diarrhea. We actually use that as an indication that the patient is getting too much of something. This is actually part and parcel of a dosing discussion that I'll be having in a couple of weeks with the LDN Research Trust is understanding how dosing has to be much more nuanced and much more specific. 

We do have to look at starting low, going slow, titrating to a patient response. The difficulty with low dose naltrexone is giving a patient a stable dose. It may take up to eight weeks to see a benefit fully to realize just how much the patient has changed. We know by the side effect profile very quickly whether or not we're giving them too much or things are going the wrong direction. An exacerbation of their symptoms or a worsening of their symptoms or I'm getting headaches that I didn't get or my sleep disturbances are so bad I just can't sleep at night. 

Those are all signs like I'm giving too much; as a clinician and I can decrease the dose. One of the biggest problems that we see is with providers they’re thinking some is good more must be better. They do this very regressive increasing of dose and I think that's the part where we really have to focus on in the low dose naltrexone world is lower doses starting lower titrating more individually because what we're starting to see with this proliferation of use is much wider dosing parameters and we're seeing doses go all the way up to 12 to 15 milligrams in some patients and as low as 0.1 milligram and others. We don't know until we start with the patient. The last thing any of us ever want to do is see a patient come to harm or or have any negative consequence because they're already sick and they're already having problems. This is why part of my job is convincing people to start at a lower dose and titrate a little bit slower. Just to make sure that we don't go past their need point and help have the patient give us that feedback. 

That's one of the nice things about naltrexone is there is an incredibly wide safety margin. I think there's information out there where we have patients at 150 milligrams as a chronic ongoing dose for other purposes and high-dose naltrexone so to speak. Alcohol use disorders where they're taking 150 to 300 milligrams in a day. Low dose world isn't a concern of toxicity or harm. It's more not getting the right immunological modulatory response. That's the discussion and there is actually a case study where a patient ended up taking almost a whole bottle in one sitting. They were fine. They felt pretty chummy for about 24 hours but we're talking about 50 milligram tablets that I consumed, quite a few of those tablets. Our worry about harm is mitigated on the fact that we have much higher doses that are used for regular dosing naltrexone and most patients respond very favorably once we start initiating and when we see a, “Oh I don't feel right or it's getting worse,” that's usually a sign of too much. It's not going to harm you but we don't want to miss the nice response of LDN. That's the beauty of this drug. We can say to patients very comfortably, “Well the harm in trying is very minimal.” It's actually no physical harm or there's no consequence to the patient other than it may not work, as opposed to some drugs. If it doesn't work you may have some serious side effects and that we are very aware of. The discussion is very useful with other clinicians because in pharmacy, as well as, in medicine and any sort of healthcare provider is the risk has to be balanced against the benefit for the patient. When you're talking about a drug that has very minimal side effect profile especially the doses we're talking about with very small steps forward, it's a very favorable risk-benefit ratio, so to speak. Lots of benefit participation, very little risk. 

There you go in a nutshell. I mean some people, not myself, I must admit when you get medication from the doctors, not compounded, you know off the shelf, there is a leaflet inside telling you how to take it, when to take it, possible side effects, all that kind of thing. You don't get that with LDN and some people would like more information.

There is this great website you can go to, the LDN Research Trust. They have some resources there like a recent dosing guide. There is a list that we're suggesting, and I've been an advocate for this for a long time. I love the fact that the LDN Research Trust has this as an open source. There's no membership, no fees, no cost to find information. You can go and you can find patient dosing information. You go to the resources tab, highlight it and then you get a drop-down menu. You can find LDN guides - click on that and then you can find it right there. It's a PDF, you can download and print. It's actually something that we in the compounding world have been suggesting, because it's such a useful tool. It's referenced, it's got scientific references behind it, it's got information and it's got available dosing recommendations that are very different than what we saw even five years ago. 

We start at much lower doses. We titrate to patient response, that's all included in there. Unfortunately it's a 2022 reference dosing guide and I think that your team may have work too, because in 2023 we're going to see some positive changes where it's going to be reinforced by the dosing parameters that we're working with, but new references. That's going to be the tough part, is updating it. But it's brilliant. That's where I would go. And then the other one is to talk to your clinical pharmacist. If they don't have the information, find a compounding pharmacy that is already working with low dose naltrexone. 

I can walk into five pharmacies from the office that I'm sitting in currently, and I can ask them what they know about low dose naltrexone. I don't know; they'll say not a lot, because not every pharmacy has the same focus of practice, or the same education behind them. 

Our role here at PCCA is education, clinical consulting support for those people who are invested in compounding. We've seen some pharmacies here and they're like oh you just take a tablet, mix it up and throw it in some water and they’ve failed to mention that water doesn't have a preservative and if you mix it up you may not be getting a consistent dose. How much to take and you go to a clinical compounding pharmacy with that niche practice and they're worldwide by the way, we've got some members all over the world, so big shout out to all of them doing brilliant work. They're focused on this and they are advocates for the patient. They're advocates for the patient's health and so they'll give you the best up-to-date information. If not, the LDN Research Trust website, talk to a clinical compounding pharmacy that's focused on LDN.

We still have people unfortunately that think they can buy 50 milligram tablets off the internet or buy in fact LDN off the internet or make their own and it's very scary not to be recommended.

I'm going to be as diplomatic as I can. There are a lot of good people out there who are trying to do good work. There are pharmacies that are available online and you can order items from them as long as you have a valid prescription in the country to which you are sending that prescription. The difficulty with internet commerce is there's a lot of people who are great. There's someone out there who wants to buy something and I want to make some money and so they will ship you stuff that doesn't contain naltrexone. It's just got some bad tasting chemical in there that they think will change how you think. Unfortunately we see this not only in the internet commerce, but we see this in a discussion of drug supply. We don't want to see any patient take something that they think like this is going to be great and it's cheaper, and you know it's just as good quality. I can make claims on the internet all day long, and if I do that for a year, and I can sell you dirt out of the parking lot; it'll take a long time for me to be shut down. There's a lot of patients that can come to harm from that practice. 

We always suggest working with a regulated compounding pharmacy, and every pharmacy that would be available to you is regulated by your local government. It is a brick-and-mortar place that you can tangibly speak to a person, and you can ensure that you're getting a quality product, from the reason we talk about compounding, and getting it dosed individually for you. I went to school for a number of years just to learn to be a pharmacist and then I spent a number of years being trained to become a compounding pharmacist. When you're talking about 0.1 of a milligram, we're talking about smaller than a speck of sand that you can see and we're trying to dose that consistently and accurately every single time. It's a big difference than someone making at home without training and thinking like yeah I'll mix it together. We are not making cakes, we're not making omelets. We're making drugs that impact your health. We need accuracy and precision to create a clinical outcome for the health of the patient. Getting tablets off the internet from someone who's selling it to you cheap 's a little bit like buying tires that you bought that you're getting from someone that doesn't make tires. They're just trying to sell you something cheap. It's always a consequence to the patient and you hear about this over and over and over again. You hear the story of people who are unscrupulous and they're preying upon people who are in need. I would rather see a patient get a quality product because that will improve their health so significantly that all of a sudden all those other concerns evaporate. I can't speak to pricing but I can speak to when I see a quality product is used we get quality outcomes. That's the connector. That's why we work with you, because we see the quality education and the conferences and resource sharing. 

The LDN Research Trust is focused on the same outcomes you want. The best for the patient and being advocates. We want the best presentation by advocating for the best product. They go hand in hand. 

It does scare me when companies out there, or individuals that I don't know who they are, but you can actually buy LDN without a prescription, but it's a prescription-only drug ,and that should set off alarm bells that you know it's bypassing all regulations. It can be anything, and I wouldn't want to play with my health or my life. 

I would challenge anyone to really really think about this. If we say that it's a prescription item and it's only available from a registered regulated pharmacy under the guidance of a healthcare provider. Would you go and buy a heart medication off of some guy in the corner? No, you'd be thinking I'm getting this cheap and he's pretty shady and I don't know what he's up to, but you know it should work. He wouldn't take that chance with your heart. Why would you take that chance with your immune system? Why would you take that chance with anything? It's terrifying to me. I will be brutally sharp on this one. We see what's happened in the illicit drug supply with people who are changing drugs with everything from carfentanyl to dalzine to fentanyl and these are people who are a high high risk for what drugs they’re taking. What's to stop these extremely unscrupulous people who are selling things on the internet from starting to use tainted drug supply for those purposes. This is not a good group of people. They're breaking the law. 

There there's so many issues here and the intention is to become healthy. Why would we take a legal practice and start our journey there. It just it doesn't make sense to me. Yeah it's cheap, great, it's illegal. You don't know what you're getting and you're setting yourself up for a high risk, high harm potential. That's not what any of us want to see. So please there's one thing I can suggest is don't do that. 

Thank you so much for having spoken with us today Sebastian. We look forward to your conference presentation in a few weeks.

I am so excited about it. I get to come in early. I'm going to be there for the entire conference. The collection that you have put together is just amazing.

 

 

Yusuf (YP) Saleeby, MD - Update on COVID, Long COVID and LDN (LDN; low dose naltrexone)

 

 

Kristen Burris LAc, MSTOM - Acupuncture and Chinese Herbal Medicine(LDN; low dose naltrexone)

 

 

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us .
Linda Elsegood: Today we're joined by Sandi from the US who takes LDN for multiple sclerosis. Thanks for joining us today Sandi. 

Sandi: I thank you for having me. I love LDN. I want everybody to know about it. 

Linda Elsegood: So when did you first notice your MS symptoms? How long ago was that? 

Sandi: I was diagnosed in January of 84. And totally paralyzed by that fall and with a lot of help from God I got back to being fairly normal and I walked without aids until 2016 when I had to have back surgery. And so I yeah I'm doing the impossible which people think I shouldn't be doing. So I'm pretty thrilled that I've not being completely wiped out with the stupid disease because it's a horrid horrid disease that I want no one to have. 

Linda Elsegood: Exactly. So can you tell us what was your life like before you started LDN? 

Sandi: Immediately before. Okay with the MS I also have a disease called interstitial cystitis which is also called painful bladder disease and so my life before LDN I would literally have to go to the bathroom every 20 minutes to two hours when the interstitials kicked in, and with the MS I was had overactive bladder terribly bad. And so I couldn't go more than an hour or two without having to go to the bathroom and that was day and night. And so with LDN once I started that my bladder has been nearly normal, which is absolutely amazing. Before LDN I couldn't drink my coffee because it's a diuretic and so it would go right through me. But now with LDN I'm so totally normal like you go five six hours during the day without having to use the restroom or I sleep eight hours through the night. Eight to ten hours through the night without having to get up. It's amazing absolutely amazing the difference that it made. 

Sandi: And then something I didn't realize and I had been keeping track of it because it was something odd. I started going to the bathroom in the other direction too, having bowel movements, and before LDN I was perpetually constipated. I sometimes didn't go to the bathroom for five six days at a time. But in 16 after I started taking LDN I started going to the bathroom. What's this? Why? You know it's different and after I looked into it and started studying it a little bit I went well, of course the LDN has got me regulated that way, too. Which is an absolute miracle because being constipated for back then, what was it 25 years, that's a long time, and so it totally reshapes my whole life. I love it, I love it, I love it. 

Linda Elsegood: So apart from the bowel and the bladder problems prior to LDN what were your other symptoms? 

Sandi: With the MS or yes well, I have abnormal feeling below my waist. I can feel that it's abnormal. Fortunately, MS has not affected my brain. I'm still very cognitive and the neurologists agree with that. I have balance problems and I can't walk far, but I can walk. So I have abnormal feeling just throughout my body. My hands when I was first diagnosed were impacted but they are no longer a problem and my arms were never impacted. So those are good things. My eyesight was never changed with the MS but the drug that I took for interstitial cystitis has given me macular degeneration, and so I have lost the central vision in one of my eyes, but that that was the drug that caused that. And the fatigue, that's the big one, as most of us with MS have extreme extreme fatigue, and that is something that I have not found anything that helps with that. Get down. 

Linda Elsegood: Didn't the LDN help with the fatigue? 

Sandi: Not that I noticed, no. I wish I wish that it did but no. I found nothing that really helps with the fatigue. 

Linda Elsegood: Have you looked into diet?

Sandi: I tried a diet when I was first diagnosed and on that diet I lost so much weight I weighed under 100 pounds and I'm five foot almost five six, and so diets don't work for me. I wish they did, and they're extremely complicated, so I have troubles eating, as it is so to go on a diet. I can't do. It doesn't work for me. 

Linda Elsegood: Okay so just prior to starting LDN if you had to rate your quality of life on a score of one to ten and ten being the best what would it have been? 

Sandi: Before? Yes. Probably a three. Okay and now, well I I get more I get more complicated as I go along. This past March I broke my butt, I just fell onto the floor and I got to sacrum fractures and spent 28 days in the hospital and so without that my quality of life would be an eight. I was working part-time. I was doing really well, until I got COVID in 21. Spent 21 days in the hospital and lost my dad to it in 21. But I was coming back from that and then I fell and broke my butt and so prior to all that, I would say that my quality of life was about an eight. Right now I'm more six seven-ish just because of the healing that's still taking place in my butt. 

Linda Elsegood: Has LDN helped with the pain at all do you think?

Sandi: I think that it has because there were a couple times within that hospital state that I did not have my LDN and I think once I started back on my dosage the pain lessened. It didn't go away because obviously it's two fractures, but it I think that it did help, and I think that it does help I'm not nearly in the amount of pain that I used to be in before LDN because I've always had hip pain, and there's a spot in my butt, they never really knew what was going on, and that's why I had back surgery. But that has always kind of been there, but after the LDN it definitely diminished. So I think it does help. 

Linda Elsegood: And did you recover from the back surgery okay? 

Sandi: I did. The back what was happening was there was a nerve that was hitting something. was hitting on a nerve. and I would just be standing at work and it would drop me. and nobody quite knew what it was and then they found out that my S1 disc was problematic and so they went in and fixed it and it stopped that.

Linda Elsegood: And what caused your fall your last fall where you fractured two of your bones? 

Sandi: These fractures that I just had in March, I had just come off of my fourth colonoscopy in a year, and my legs just gave out and I just basically squatted to the ground, but fractured both sides of my sacrum. Yeah don't do it. I like to tell people bust your butt doing the things you love, just don't bust your butt the way I did. It's not worth it at all. 

Linda Elsegood: Yeah sounds terrible. 

Sandi: It is. Yeah I I recommend nobody else do it. 

Linda Elsegood: Yeah. It's not good. So how did you know initially that you had MS?

Sandi: Well, I was back in college and all of a sudden my butt went numb. It was like I had sat too long and I went to the doctor at that point and said my butt's numb. He said oit might be MS. Well that cleared up, and then I had taken a terrible fall when I was hot potting in Yellowstone Park, and I kind of fell down the mountain. I gotta admit I was partying. Yeah. So we thought that was it. But then I was working for a theater company and we were loading up the bus from the second story loading dock and I fell out of that loading dock and ended up with terrible terrible headaches that sent me to the neural neurologist for the first time. And so they diagnosed MS at that time. 

Linda Elsegood: So you've got an expert faller one way or another. 

Sandi: Yeah exactly. No it was kind of just an odd way to go around getting diagnosed 
Linda Elsegood: But were you on any treatments at that time? Anyway treatments? Treatment? Did they offer you any help? 

Sandi: Oh yeah, no in 1984 they really didn't. I took some steroids, not for very long, but they didn't have any treatments ,and so after the recovery from the total paralysis where I learned to crawl, then walk with crutches, then walk with the cane and then walk independently, I was pretty normal, other than my bladder and my bowel. I mean I walked very stiffly; it was an abnormal walk, but a lot of people didn't know and so I walked like that until my back really gave out. 

Linda Elsegood: You very lucky with not having cognitive problems. 

Sandi: Very lucky. Yeah, yeah that that that to me would be the worst, yeah, I like being able to think and respond and obviously talk. I'm very very grateful because it could be a whole lot worse. I have to have to all the credit to God because he's the one that's done it. I'm very blessed. Very very blessed, because at the beginning the doctors had said you will never walk again and they guaranteed that I wouldn't walk without aids and I did. I walked without aids for 25 years. That's a long long time isn't it?

Linda Elsegood: It is. Yes. It is. Are you able to do any exercise or are you having to be very very careful right now? 

Sandi: Right now, and I've got people in praying about this, is there's kind of a fear of walking, just because I don't want to fall again, and so I have planned that I will start going again to the YMCA and rebuild my muscle. It's not like me to be scared of walking, but I have been. But I am just now getting back to overcoming that. 

Linda Elsegood: Well that's good. 

Sandi: I'm going to get back to me, get back to, yeah. (laughter) I do live alone so, I'm totally on my own. As I said, my dad had passed from COVID last year and he lived next door to me, so. So, this whole year has been a total relearning curve. But as I said God and LDN are my two staples that I will never quit never. 

Linda Elsegood: You've done remarkably well, absolutely remarkable well. What an inspiration. 

Sandi: But I hope I hope I am because it's a mindset; you can't you can't give in to the negativity. And I love my doctor that had prescribed LDN. I think that I found out about LDN on my MS websites back in 15 or so, but I am her first patient that she's put on it, and she puts anybody with the autoimmune disease on it now. And because of me. Because it has worked so well for me, she now readily prescribes it. 

Linda Elsegood: Which makes me happy, because you've been on it's a long time. So she's been able to see that it hasn't done you any harm, and you'll continue to improve, so that's amazing. 

Sandi: Oh yeah, no side effects whatsoever. And I love my dreams. I keep saying that if I could totally remember them all the time I could write sitcoms. They are so funny yeah. I I absolutely love the weird dreams. 

Linda Elsegood: I feel robbed now I never had any dreams. 

Sandi: You haven't? That's the one side effect that I do have from it. Like I said, I think they're crazy. I love them. 

Linda Elsegood: So the doctor that prescribed the LDN for you, was that your own doctor or did you have to go looking for an LDN doctor? 

Sandi: No she was my own primary care physician. 

Linda Elsegood: That's good. 

Sandi: Yeah and like I said, she is sold on it now She's absolutely sold on it that she will prescribe it for other people that come to her. So that's a good thing when I tell people about LDN, here in my community, at least so I can tell them you know, Dr. McIntyre will prescribe it for you if you want to try it, she will do it. 

Linda Elsegood: Did it take her a long while to decide to just prescribe it for you? 

Sandi: It didn't. My doctor knows that I do a lot of research in all areas of MS and autoimmune diseases mainly. And so she knew that I knew what I was talking about. She has been very supportive of me because I have gone around the world with stem cells for adult stem cell therapy. And so she knows that I do my research. She knows I'm not just slinging it at her going let's try this. She knows. So she was very good about prescribing it readily, easily because she knew I really looked into it. It wasn't just a spur of the moment thing. 

Linda Elsegood: And how did you get on with the stem cells? 

Sandi: I have some friends who I call my stem cell gurus who matched me up with different places, and the progress and the promising results of them. And so that's the other thing I like. I like adult stem cells. My last ones I had were in 19, and I went to Chicago and Mexico and those stem cells have totally eliminated my problem with heat intolerance. I used to have to have the air conditioning blowing full blast in the summer. This summer I've turned my air conditioning on maybe four times the whole summer and we've had a record hot summer in Montana. So yeah that's another thing I'm sold on, stem cells, and yeah I like those. My ones from Israel I found I walked totally normal, but only for nine weeks until they've they wore off. So you have to keep getting them to keep them working, but it proved to me that they work. There's going to be time that I go get more and I think they work well with the LDN. I think they're in a similar league for me that they're promising in all sorts of areas. 

Linda Elsegood: Well, we wish you all the success with your healing. We hope that you’re back up on your feet soon. 

Sandi: Thank you. The one thing I will say, and I follow LDN groups, I'm on several of them obviously, but the one thing that it has not helped me with at all are dry eyes, and I see people saying that they get help from that. But for me that is something that it has never helped. Which I wish it would but it has not. Okay. Everybody's different, so. 

Linda Elsegood: Exactly. 

Sandi: May I ask what you take it for? 

Linda Elsegood: MS. 

Sandi: You do. Okay. You too. What's your story? 

Linda Elsegood: Oh you'll have to listen to it. You'll have to Google me and listen to it. 

Sandi: Okay 

Linda Elsegood: Any questions or comments you may have please email me Linda l-i-n-d-a at ldnrt.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 

Covered in The LDN Book 3. Purchase The LDN Book 3 at https://www.ldnrtevents.com/collections/ldn-books and find out more!

 

 

Asher Goldstein, MD - His experience with LDN as a Pain Specialist; LDN Radio Show 2022. (LDN; low dose naltrexone)

 

 

Linda: Welcome to the LDN radio show brought to you by the LDN Research Trust. I'm your host Linda Elsegood.  I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Linda: Today we're joined by pharmacist Sherry Galvin from the Compounding Center in Leesburg, Virginia. Thank you for joining us today Sherry. 

Sherry: Oh, thank you Linda for having me. It's always a pleasure. 

Linda: So can you tell us what's been happening in your pharmacy. 

Sherry: Sure, yeah.  I guess the latest related to naltrexone or low dose naltrexone is we gave a lot of thought to what causes problems for patients taking low dose naltrexone, or really any chronic medication that they have to stay on long term, and the biggest thing that sort of jumped out at us was compliance. You know, making sure that the patient understands the importance of taking it daily.  That the patient can take it daily and starting to drill down into that we unpacked a few things that seem to be important to patients.  You know one specific to LDN was getting that dose right. The tapering up to find that magical dose, but not having so much that you start getting side effects.  So, finding the right dose was important.  Having the therapy be affordable was important, and convenience and sort of being easy to take were other things that patients would give us a lot of feedback on.  As compounding pharmacists, we like to think of ourselves as troubleshooters.  So from there we take that and sort of say okay, well, how can we help our patients make sure that they are compliant on this therapy? And we ended up developing what we call a flex dose tablet.  We have LDN flex dose tabs, and it allows the patient to taper their dose very easily without having to purchase multiple different strengths.  They can get one tablet that is scored four ways. It's very easy: you literally just touch on it and it'll snap in half, and you press down again it'll snap into quarters.  So, the doctor and the patient can work together to make sure that they're finding that magical dose, but not so much that they're getting side effects.  So it does allow some flexibility for the patient to go up or down, and again, without them having to purchase multiple different strengths.  Hopefully they're therefore making it affordable.  

The other piece of that is realizing -  and I know a lot of pharmacies do this - realizing that our patients need convenience. They don't want to remember it's time to call and get my prescription refilled, or even realizing they’re out of pills and don't have any refills.  Then that gap in in therapy happens. So we instituted what we call an auto-refill program, and the patients can self-enroll. It's not automatic. They choose to enroll or not, and we will reach out to them about a week to 10 days before their medication is due to run out, and say hey, we're gonna get this ready for you, we're gonna go ahead and ship it out to you, let us know if there's been any changes.  And we've had tremendous feedback from that.  It's just one less thing they have to think about in their lives.  

So that's kind of the latest things for us, the LDN flex dose tablets, and the auto refill program that goes along with it. Other than that, just sort of bouncing back from COVID-related things, and being thankful that we don't have people lined up out front waiting for a shipment of masks.  It was such a crazy time.  So it feels a little bit more normal in here now. 

Linda: So, when you collate your patient feedback, what has been the experience with side effects? What side effects have been reported to you if the dose has been too high?  

Sherry: Initially, the biggest complaint we get is sleep disturbance of some sort. They might say that they can't fall asleep, or that they're having such vivid dreams that they don't feel like they're getting quality sleep, and oftentimes the physician will just recommend that they either switch the dose to the morning, or that they back down a notch on their dose to see if that fixes the problem.  Occasionally we'll get a person tell us they'll have some GI side effects, but not very often. This drug is so well tolerated compared to other things on the market. We really don't get a lot of complaints about side effects, thankfully.  

Linda: And what about feedback of good results?  How long does it normally take a patient before they can say, "I noticed that it's working for me."  

Sherry: Yes. I sometimes will have a patient tell me after two to three weeks they'll start to notice some effects, but usually it's around two to three months that they'll say hmm, you know, looking back I realize my joints aren't as swollen or stiff.  Or, I am getting better rest, I can exercise a little bit more than I used to be able to, and you know I'm a big fan of a symptom diary,, for lack of a better term to call it.  Because a lot of times the changes are not miraculous, but when they start really documenting how they're feeling each day, and even putting a number to it, you know, scale of one to ten, how's my pain today; scale of one to ten how's my energy level today? It really gives you a little bit more information to compare today from two months ago, instead of just saying I'm not sure this is working. The other thing that we sometimes see happen is they'll think this drug is not doing too much, and they'll stop taking it. Then that's when they realize oh wow, it really was helping me.  I just wasn't tuned into how much I had improved.  So that's the other thing that we hear occasionally.  

Linda: And what do you say to patients when they say they don't think it's working for them?  How long should I  take it before I stop and say it's not for me?  

Sherry: We usually try to talk to them about their dose and just ask where are they?  What have they done?  Did they taper up?  Are they too high?  It seemed like everybody was going for that 4.5 milligrams per day for the longest time.  And I think now prescribers really do realize there's a milligram that works for everyone, and it's not all 4.5 milligrams. Have they overshot the dose that is needed for their condition?  We usually start there and talk to them about what dose they are on.  What dose have you tried?  How quickly did you go to this dose?  Those sorts of things. But we do try to encourage them to at least give it a four to six month trial before they say this drug hasn't helped.  Because we don't want them to abandon therapy too quickly. 

Linda: We did a survey several years ago now and found that LDN did something for most people, even if it was stopping the progression. If they were having a rapid progression, it had halted that. But there were a few patients that it had halted the progression but it hadn't actually helped with any symptom relief. And then in between 15 and 18 months when you would think they wouldn't notice anything else they then started getting symptom relief. That was quite an unusual thing. So we actually say a lot longer than you.  If you're okay taking it and you can afford to take it, we would always say take it for like 18 months before you give up. And exactly what you were saying when people say no definitely not working for me; no, I'm going to stop within two or three months they want to get back on it again because they had forgotten just how ill they felt previously.  Yes. Yes that's  always a thing isn't it. So in your practice, what would you say at the moment is the main condition that you're using LDN for?  

Sherry: I would say the main condition would be the sort of the grouping, and I don't mean to say they're the exact same thing, but the grouping of either chronic fatigue syndrome or fibromyalgia seems to be the biggest, but we do have a lot of patients who have various autoimmune conditions, whether that be rheumatoid or psoriatic arthritis, things along those lines. Irritable bowel, Crohn's, that group of people as well would probably be the next biggest category, if I could put them in a group. But it's amazing what we hear people using it for, always seems to be some new thing, although probably if you drill down to it, a lot of what we hear complaints about are somehow connected to either autoimmune or some kind of chronic inflammatory cause. 

Linda: And the patients with CFS, ME, fibromyalgia are usually the patients that have ultra-sensitivity to drugs, any drugs, and especially LDN.  So usually in my experience, those people don't even start on 0.5, they quite often have to start even lower and have to titrate it slowly, as their system gets used to it. Is that what you found in the pharmacy?  

Sherry: Yes, and a lot of times these patients also come to us with other sensitivities that make them very concerned about the medication, so  one of the things that we like to make sure is, we keep it simple, make sure that the tablet is as clean as it can be with no allergens in it, no fillers that would cause any sensitivities, because we do see that a lot with our patients. They have a lot of sensitivities. So yes, very low dose, ultra low dose if you want to call it that, and a slow taper.  That's the other thing:  a lot of times, especially more at the beginning when we were beginning to use this years ago,  we would see where the prescription would be written “Take one dose for a week and then increase for a week and then increase for a week”. We typically go a little bit longer, a little bit slower taper if you will. 

Linda: In your pharmacy, you were saying about being careful of fillers. etc. What different dosage forms do you compound? 

Sherry: We do a liquid dosage form for patients that need a very low dose. It can be done as a drop under the tongue, is what we normally recommend. We have immediate release tablets We have an immediate release flex dose tablets that I described earlier that can be broken into quarters. And we also do capsules. We still have some call for capsules.  There are patients who, for whatever reason, don't like the tablets. And where the oral dosage forms are fairly small, the tablets are approximately the size of a mini-M&M, and the capsules are about that size around, but maybe a quarter of an inch long. We try to keep them small, because we do have patients that will complain of trouble swallowing. 

Linda: You do a cream or….

Sherry: Sorry, I missed that.  Yes, for our derm patients we do topicals for different skin conditions. The other thing that we have recently been requested to make is topical formulations for  veterinary patients. Not so much for cats because they just lick everywhere, but dogs, if they have dermatitis or allergic reactions, we have found that topical LDN is very helpful. We also had a request for an LDN vaginal product, only once, but we have done that as well. 

Linda: What about eye drops and nasal spray?

Sherry: I have not had a request for that. We do a lot of different nasal sprays, but we have not done LDN in a nasal spray to my knowledge. Eye drops get a little bit tricky in the US, because of our regulations. Oftentimes when you're making a sterile product, which an eye drop would be a sterile product, the expiration dates are so short that it makes it almost  impossible to be a reasonable therapy - you can't have the patient come back every three days for a new bottle of eye drops - without a bunch of stability studies, which then shoots the cost of the preparation up so much the patient can't afford it. So eye drops do get a little sticky in terms of nothing having to do with the ingredient, more to do with the regulations. 

Linda: There are pharmacies that do eye drops for dry eye and Sjogren’s syndrome.  But I've also been told that the nasal spray helps with dry eye as well. 

Sherry: That is a very interesting concept, because there's just been a drug released on the commercial market in the US that is a nasal spray. Its indication is for dry eye. So a very interesting thought, yeah. We may have to talk to some of our ophthalmologists around the area, because we do have a lot of dry eye. All of us are in front of our computers way too long now,  right. Yeah, especially the last couple of years. So dry eye has really gone through the roof. Excellent tip. I'm gonna take that and talk to a couple of our ophthalmologists around the area. 

Linda: Well let me know how it gets on.  I do have dry eye, and I might have to have eye surgery, which is scaring me, but I would love to get hold of some nasal spray. So next time I'm in the US, I'll probably visit a doctor and see if I can have a prescription for dry eye. That would be here quite good. 

Sherry: Yes, yeah, that's a that's a very interesting thought. Yeah.

Linda: Even though it's not actually directly in your eye, when you squirt it up your nose or passage, of course it's getting up into the inside, isn't it? So it makes sense to me that it would potentially work quite well. 

Sherry: Yes, yep that does make sense. 

Linda: Well it's been wonderful speaking with you today Sherry, and I can't wait till next time. 

Sherry: Oh, thank you so much.  I hope you have a wonderful day and I appreciate being able to catch up with you.

Linda: Any questions or comments you may have please email me Linda Linda at ldnrt.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

 

 

The LDN 3: To Purchase with discounts before 1st September 2022 Go to ldnresearchtrust.org/ldn-book-3 for full details

 

 

Linda Elsegood: Welcome to the LDN radio show brought to you by the LDN Research Trust I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Today we're joined by Kara from the United States who uses LDN for Multiple Sclerosis. Thank you for joining us today, Kara. 

Kara: Thank you for having me. 

Linda Elsegood: Can you tell us how far back was it when you first noticed an MS symptom, even if you didn't know it was a symptom? 

Kara: Oh my goodness, probably when I was first at university, my first little episodes began. I had UTIs that no one could explain why I kept getting them, and couldn't really get rid of them ever. And I had some issues with some muscle spasms, but very minor things. And then 11 years ago this month I had an episode of trigeminal neuralgia. I was driving; I had a brand-new car. It was my first day driving my brand-new car and I had taken my children to school and I was on my way to work, and I had to pull off on the side of the road because I almost passed out from the pain. I don't even know what I thought. I thought I had a tooth abscess or I thought maybe it was like a heart attack because I feel like women don't pay attention to those things and it can be jaw pain. So all this is going through my head, and I went to the ER, and they said there's nothing. It's not a cardiac issue. It's not this. It's not that. We don't know what it is. I saw a dentist the next day who thought it's neurologic, and that was the first time that this was even on my radar. I was just so stunned that that specific ridiculously bad pain was something related to a neurologic condition. I just didn't have any idea that that could happen. At that time I ended up having an MRI for diagnosis of my MS. When I had that MRI it actually showed that I had thyroid cancer at the same time. So in a very strange way MS has saved me from having a much worse cancer diagnosis because it was caught so early on that MRI. While I was dealing with that I had surgery, and went through some stuff. I began the LDN. 

I'm actually a lawyer who typically has represented doctors and hospitals and those sorts of things, so I have a lot of resources; and my husband is actually a physician as well. I started trying to educate myself as much as I could about the inflammatory process and what that actually can mean, and how that affects everything, from depression, to cancer, to MS, to I don't know… your mood. And with the LDN, I've actually not started a disease modifying therapy. It ended up that I had cancer three more times after that initial bout. Not with the thyroid because it was gone. And it just started this huge health journey for me. I never really had any health issues. I was never really super heavy. I was never really super troubled by anything. And I feel as though, looking back, what a gift that was. But being on the LDN has just made me sort of born again. I think everybody should be on it. I think it's wonderful. It has done so many good things for me. It has lowered my inflammatory markers. Our prior home was just filled with stairs and maybe three months after I started the LDN, maybe four months, I was at the top of my stairs and I realized I had just run up the stairs, which I had not physically been able to do in I don't even know how long. It was like I was a child and just forgot myself and did it. And it was in that moment that I realized that my balance was so much better. 

For me, my biggest things besides my inflammatory markers being somewhat beaten down from the LDN, my biggest two biggest things were fatigue and balance that I was helped most with the LDN. 

Linda Elsegood: If we go back to prior to your MS diagnosis, what kind of things were happening transiently at that time? 

Kara: That was when I was probably my most clueless about myself. I was litigating, so I had trials, and my work was incredibly consuming. And I had two children, and I was just fatigued beyond fatigued, and I couldn't understand what was wrong, because I've always slept well. I've always had good bedtime habits and that sort of stuff. I would get home from work and it would be 6:30 and I would put my pajamas on, and just be preoccupied with how soon can I get to bed. That's just bone tired fatigue that I liken it to jet lag. I felt like I was jet lagged, and I had just gotten off a red eye, and I had slept a solid eight, nine hours. There wasn't anything to explain that. The other thing was it was falling. I had a couple of falls. I broke my ankle very very badly. I fell down stairs, ironically. And it became apparent that I was having some sort of balance issue. I had my eyes checked because I thought maybe, maybe I'm just clumsy because I'm not seeing well or something, and everything checked out. It just really was something that I kept pushing to the side until I no longer could, and I had to really look in the mirror and say this isn't a normal thing to have happen. 

Linda Elsegood: And how long from having the problems with your UTIs to actually being diagnosed, how long did that take? 

Kara: I'm embarrassed to say 20 years. Really. It was a long journey, probably lengthened by the fact that I'm very stubborn, and I'm a bit of a control freak, and so for me to have something that I couldn't control, that I couldn't fix, that wasn't making any sense logically, it was very difficult to digest, and realize that I actually truly needed help. I figured that part out and I went to my neurologist, and I had looked up LDN, and I asked him to prescribe it. He was an older gentleman, but also vegan and into all the ancillary things we can do to be better, and he completely scoffed at me and he said, “You're already gluten-free, you're already eating this, you're already eating that, I guess you'll be completely cured if you begin this”. So I left without my LDN, and I went to my primary care physician and I printed up all these papers about LDN, and I walked in and I was ready to plead my case as to why I would like to start this, and he laughed and said he’s been prescribing that for 10 years. I was like, oh why didn't I come to you first. He was very knowledgeable and I feel incredibly lucky that not only did I find out about LDN, that I found a provider that was willing to work with me and educate me about titrating up, and working through that part of it. It has just been utterly a game changer for me truly. 

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

Kara: Almost 11 years. Wow. Yeah a solid 10 and a half years. 

Linda Elsegood: So what was your fatigue like once you've been on LDN a while? 

Kara: Normal; it was a normal logical thing that if I were up late I would be tired, but if I were going to bed when I typically do and sleeping well, I felt great in the morning, and I didn't crash during the day. I don't really use caffeine, so for me it was just incredibly noticeable when I was dragging, that I was literally coming in the door, can't wait to get on my jammies and go to sleep. It was night and day difference. It literally was as though I had been sleep deprived for so long even though I wasn't. But that's how it felt. It felt as though I had been sleep deprived, walking around in a haze, and then the clouds lifted. I think the other thing is I think cognitively that contributes to brain fog. Just that sense of - I don't know when I was fatigued, I was preoccupied with it. I was thinking about it. I was thinking can I put my head down on my desk for 10 minutes nobody will know. Just things that are kooky when I look back. And I thought good lord, why didn't I say something before. Again, I think that's probably part of my personality, but boy it really, really, really helped me a lot. 

Linda Elsegood: What about UTIs? Are they still an issue?

Kara: Nope, zero. When I was having the UTIs, it wasn't as though I had poor personal hygiene, or I didn't understand the mechanisms through which those terribly unpleasant infections occur. I knew all of that, and what's ironic is that even before my diagnosis - my oldest is about to turn 24, and when I was pregnant with him I had UTIs so badly that I had to be on an antibiotic my entire pregnancy, and then six weeks postpartum. Looking back, it was the MS. But I didn't know where to put that. I just thought, oh how odd that unfortunately, I've now started getting UTIs again, and I'm pregnant. And I don't know why.

Linda Elsegood: It's funny you should say that. I had Epstein-Barr - we call it glandular fever - when I was 13, and I had like a year of school, I was really really ill. But when I was 17 I started to get UTIs. One after the other after the other, and I became very aware of my bladder, and I could feel if I was dehydrated. I needed to drink more to flush it out, but it was just awful. I mean one load of antibiotics after another after another. And so I understand where you're coming from. 

Kara: Well, I literally have water with me at all times, only because I think I have PTSD from having had so many UTI. I guzzle water constantly still.

Linda Elsegood: Yes. It's quite funny, I saw a nurse and she said, I always have beside me a pint glass. If you do pints. But I've always got this glass, and she wanted to know if I was drinking three pints a day. I probably drink five; I don't drink just three. I know that some people struggle, and she was saying tea and coffee don't count, it has to be water. 

Kara: You're the only other person on the planet that does drink enough water the same way. I feel almost defensive when I'm questioned about my water intake by a new healthcare provider or something and same thing, really, I drink way more than that and I'm very good. 

Linda Elsegood: The only thing is as I've got older I pay for it in the night. 

Kara: Me too. Same. 

Linda Elsegood: There isn't a magic cut-off time where you can drink all day, and then you can go all night, and I quite often wake up twice. 

Kara: I know I'm like a puppy, that you have to put my water away at a certain time. 

Linda Elsegood: But it's preferable to have in UTIs. 

Kara: Oh my gosh yeah. Because you're still peeing in the middle of the night with the UTI. 

Linda Elsegood: Exactly exactly. So when you started LDN way back, what dose did you start off with? Can you remember? 

Kara: Yes I started at 1.5mg. I was on that dose probably about two months. My only side effect that I've ever had from LDN, I had called them pregnancy dreams, just like very vivid dreams that I get if I'm pregnant, or if I take Benadryl. So not anything terrifying, just very vivid compared to normal dreaming. That lasted maybe three weeks; I don't even think a month. Then I titrated up to 3.0mg, and I was experimenting with different methods of getting the LDN. I had troches at one point. They're like the little gummy things. I then ended up just on the capsules, and I went to 4.5mg, and for me the 4.5mg has been an optimal dose, and I've had good luck with it, and great success. 

I ended up having colon cancer twice, and a couple other little things, and one surgery, and I came off of it briefly. I was so anxious to get back on it because I didn't know if I would start feeling poorly again, or how it would work, but I have to say that even having surgeries, in that post-operative time, that can be unpleasant. I haven't taken a narcotic this entire time, and to me, that's amazing. I don't know what my little pain receptors are doing. I do have pain, but I've been able to navigate around that, and I'm very, very grateful for that because I've not had to take a big break from the LDN due to any of other ancillary stuff going on. It's been such a pleasant thing, and as I said, I when I speak about it to others, I'm sure I look a little nutty because I'm like, "Oh my god it's just so good, you should try it, it's cheap, there's no side effects and who knows, it might work for you" I could be on a billboard. 

Linda Elsegood: That's fantastic. So, what would you say to other people who've got MS, who are a bit skeptical about taking LDN because they don't like drugs, any drugs? 

Kara: Yeah, I don't either. I am vaccinated and all that good stuff, but I definitely try to avoid taking unnecessary things, and for me, this is an immunomodulating therapy that - I don't care how healthy you are, everybody's immune system could use a little bit of fine tuning, I think, and I can't imagine not choosing to do everything I can to be as well as I can, and for me LDN fits in that category. Because it's an easy to use, effective drug that doesn't affect - I don't even know how to say this clearly - I feel like a lot of the drugs that people take, whether it's like a valium or something like that for muscle spasms, or stuff for fatigue or the rest of it, they all have a lot of side effects, and I feel like there's a lot of people that don't like to take drugs, that don't even count those as drugs, and they are. For me, LDN has made me way more cognizant of my immune system and what I can do to keep it healthy, and eating well. Actively chasing that goal of health every day is what I do, and I think it's silly to not have an open mind and give it a try. 

Linda Elsegood: Thank you very much for having shared your experience with us today. 

Kara: You're welcome. Thank you again for having me. 

Linda Elsegood: Any questions or comments you may have please email me 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. 
 

 

 

Asher Goldstein, MD - LDN Radio Show 2022 (LDN; low dose naltrexone)

SUMMARY
Over the past 2.5 years that Dr. Goldstein has been prescribing low-dose naltrexone (LDN), he has shifted to a much lower and slower titration pack. He uses it for many applications in addition to pain, such as fibromyalgia, Crohn's, rheumatoid arthritis, multiple sclerosis, Hailey-Hailey, polycystic ovary syndrome (PCOS). He gets referrals for LDN prescriptions from pharmacies. He is quite impressed with how LDN works against pain, and discusses prescribing for pain. Onset of action can be short, or months, depending on various factors. He is very open to help educate healthcare professionals about LDN.

TRANSCRIPT
Linda Elsegood: Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Today we joined pain specialist Dr Asher Goldstein from New Jersey. Thank you for joining us today.

Dr. Goldstein: Good afternoon, Linda, how are you?

Linda Elsegood: Good thank you. So, could you tell us what's been happening in your practice with LDN and pain?

Dr. Goldstein: I've been practicing now just about 15 years and only started using LDN about two and a half years ago. What's actually interesting is that I just attended a conference on Friday, two days ago, and when I last attended that conference in 2019, which was you know BC - before COVID – I had not even thought of LDN. I remember just flashing back to those three years previously. There was nothing about LDN said. I had nothing in my recollection about LDN. And interestingly enough, three years ago I went as an attendee, and this year I was invited to speak about LDN. So, they were very curious, and out of about a hundred doctors, pain specialists only about five had even heard about LDN. So, it was a very receptive audience with a lot of questions and answers during the non-technical sessions, just floating around. So, it was very good, and hopefully there'll be 95 other doctors that can help their patients as well in regards to LDN use and prescribing in the pharmacy.

It has developed and transformed dramatically over the past two and a half years that I've been using it. I've shifted in how I prescribe low-dose naltrexone.  I've gone to a much lower and slower titration pack. I start at half milligram, and I only go up by a half milligram a week. I have a compounding pharmacy that has made a Dr Goldstein titration pack, and by and large, the issues that patients had previously with side effects are 99% gone. I think I've had one or two patients stop LDN because of side effects in the last year, and that's nearly none. Everybody reports dreams at some point in time, but when they're warned about it, it's usually not an issue, and most patients will move their once-a-day medication to the morning, as opposed to the evening; and then generally, those patients move it back to the evening a few weeks later.

I really branched out and started using LDN in in many many applications, especially with patients that have come to me, not necessarily all the time with a specific diagnosis. I'll have patients come who have been in pain for 15 years 20 years. They've had a rheumatologic test here or there that sometimes shows something, sometimes doesn't. They don't have anything specific. They're feeling run down, they're feeling exhausted, and they're in pain and nothing else has worked. LDN seems to work very much for these patients even though they don't have specific diagnoses. I'm not even counting the patients that we're treating from a pain perspective, you know, rheumatoid arthritis, multiple sclerosis, fibromyalgia, Crohn's, you know the list is big. It's big and hopefully we'll get bigger. The list that we have has people that we can treat. I'm treating people even with non-painful conditions. I have a patient with Hailey-Hailey. My dermatologist friend was very upset with me because that's supposed to be his field. I'm like, I use LDN. He's like, hey I use LDN too. How did you know that it was very good? And then, polycystic ovary syndrome. Some patients have become referred from different pharmacies, so even patients without pain are coming just for the LDN.

I read extensively about it in the beginning, and you're like okay, I think I should use this. But then as a practitioner, once you actually see the proof in the pudding, it's amazing, just amazing. For me it has completely transformed my practice, and where some of the patients with difficult to treat pain syndromes are less difficult to treat pain syndromes now. So, it's been fantastic.

Linda Elsegood: So, the million dollar question that everybody asks is, I've been on pain medications for the last 20 years. Those pain medications aren't working. I'd like to try LDN. How can I go about starting?

Dr. Goldstein:  I tell the patient, but they'll usually say to me, the pain medications help me get around, but they don't really treat me well enough. They allow me to get out of bed. I tell them, a hammer can also put a screw into the to the wall, but a much better tool will be the screwdriver, right? And it makes less of a mess. So the opiates are the hammer, and it's hard, so you can either go the quick way, which is a little more difficult, or you can go the slower way, which is difficult in its own way. But look, if somebody's been on opiate medication 50, 20 years, they have to significantly reduce their load. Some doctors will want them to be completely off pain medication. I find that if we can reduce it to maybe 40 or 50 morphine milligram equivalents (MME) and people can look up what MMEs are online in regard to their particular medication, and how to convert it to MMEs. There are conversion calculators. But usually about 40 to 50 MMEs can still be handled with LDN as long as it's not extended-release medication. For example, oxycodone, a combination of acetaminophen, also sometimes known as Endocet, or Percocet in the United States. If somebody's taking seven and a half milligrams twice a day, three times a day, I can actually work that in together with LDN. I tell my patients as long as you're not taking the opiate medication four hours before or four hours after LDN, you should be okay. You can take it the other 16 hours of the day as long as you need, if you need to. For example, if they go to sleep at 10 pm and that's when they take their LDN, their last Percocet can be at 6 pm and the first one could be at 2 am if they wake up in the middle of the night. But between 8 pm and 2 am, this particular example, they can't take it. Now if somebody's on a higher dosage of that, they have to reduce it or eliminate it, and that could either be done over time with slow titration, or that could be done through medication withdrawal using suboxone. Both of them have their pluses and minuses. The suboxone is quicker, but it usually requires a patient to go through 24 to 36 hours of moderate discomfort. I call it going through the ring of fire, as until the suboxone kicks in. In order to help the patients, the other way is two to three months taper of lowering the opiates while not getting the LDN yet, which can also be uncomfortable, but it can be done. The bottom line is you don't have to eliminate it completely. It just has to be reduced.

Linda Elsegood: Okay, so what have the outcomes been, as in a time frame for LDN to actually start to work?

Dr. Goldstein: It's a huge variety of time for onset. I've seen as quick as a week. I've seen as long as six months.  The main thing is talking to the patients, realistic expectations, and setting an education, meaning patients have to understand that there are many different ways that people respond to the medication. Typically, patients with fibromyalgia go quicker; patients with things like polycystic ovary syndrome (PCOS) take longer. I've seen the patients with Crohn's - those go pretty quick. In general, the medication helps patients whose diseases have two things in common:  the immune system dysfunction - I don't like to say autoimmune, I like the “immune system dysfunction”; as well as an inflammatory state. In those patients that have more inflammation than immune system dysfunction, I find that the medication works quicker. And those patients that have more immune system dysfunction than inflammation, it takes longer. That's been my sort of empiric view of what I've seen.

And again, DNA is what really rules everything, so you can have the same disease in two different patients and they respond completely differently. My lowest dose to start LDN has been 0.3 milligrams, and I actually have one patient now, with polycystic ovary syndrome, at six and a half in the evening and two milligrams in the morning, so eight and a half milligrams. In the beginning I would have never even thought that a patient could respond at so low or so high, but what one thing I've learned about LDN is that don't ever put yourself in a box. You could, because LDN constantly is evolving in my mind, its use and how patients respond to it.

Linda Elsegood: You were saying there about the dosing range - have you gone higher than six and a half milligrams?

Dr. Goldstein: Not me personally. I have not had the need to. In a single dose, I haven't done higher than six and a half, but I have done the daily dose high of six and a half.

Linda Elsegood: Do you ever prescribe it more than twice a day?

Dr. Goldstein: Twice a day, okay, I'm open to it, but with those patients that I've found the need for the twice a day is usually where the second dose is having to deal with mood or energy versus pain. So those patients, once we get the second dose in the morning, that usually stabilizes them. That's typically why I'm giving a second dose. It's not necessarily for the pain, but more for the mood and energy. and as you say, everybody is individual, the dosing is individual. There are some doctors that are getting the patient stable, let's say on 4.5 milligrams, and then they will do a second dose in the morning of 4.5

Linda Elsegood: And you're doing it at a lower dose in the morning, but higher in the evening. It is so patient dependent, on what works best for that patient. How long would you say it takes to find that right dose for a patient?

Dr. Goldstein:  The right dose can work in as quick as a week. It's highly unusual - but that's the quickest. And I actually didn't believe the patient, so I sort of pushed them to go higher. Then they felt worse, and then I'm like okay, listen to your own advice, listen to the patient. We went back down to half milligram. It can take as long as six plus months. There's just a huge variety of responses. But like I said, the inflammatory-state patients respond quicker; the more immune dysfunction patients take longer. But the majority of patients that I've seen, that they're having their disease 5, 10, 15 years, so these patients have a lot of patience, typically, and as long as they perceive that the doctor is working together with them, listening to them, acknowledging, a lot of patients say to me, my family thinks I'm crazy, my doctors think I'm crazy. I'm like, you're not crazy, you have an atypical medication and an atypical issue, and atypical issues are sometimes difficult to deal with. When people don't want to deal with them, then sometimes we put names and labels on them.

Linda Elsegood: So for those patients who are on a very low dose, and LDN is working fine for them, do you try further down the road to increase that dose, or do you just…

Dr. Goldstein:  I mean, if it ain't broke, don't fix it kind of person, so usually not. I actually had a patient in this morning who said to me, and this is a person with a lot of both back issues as well as immune dysfunction issues, and basically it was fibromyalgia when he came in, and fibromyalgia is not a typical diagnosis in men, but this gentleman came in and I examined him. He was operating, he said, at 20% capacity when he started, and now he's at three milligrams and he's operating at 70% capacity, and he says, I'm happy where I am. He says, I don't want to push it any further up or further down. I'm worried that if I go up it'll be worse. He says 70% is a huge change from where he was. So again, if a patient wants me to push a little bit, I always tell them we can always move. I can write quarter milligram pills. If you can gently push it up or down, you have that ability. It's not a medication that's fixed in any which way. And then I speak to them that their need for the dose may increase or decrease with time, so they should just be aware that it's not fixed in stone. I even tell patients four and a half milligrams is just an aiming point. We have to aim somewhere.

Linda Elsegood: So, you can't see all the patients with pain around the world. What would you say to doctors who are presented with patients with pain, who don't really know anything about LDN, and don't feel confident prescribing it?

Dr. Goldstein: If I was able to spend a half an hour of educating a doctor, I get much more return on investment than half an hour educating the patient, right, because I can help one patient, but that doctor can help 100 patients a week. That's why I really want to go to the conferences that are not LDN conferences, and speak about LDN, and encourage doctors. I say, you know the upside is that it's relatively inexpensive, there are very few if any side effects, and very few if any drug-drug interactions. The downside for doctors is that you got to talk to your patients, but some doctors don't like to do that, strangely enough, as bizarre as that sounds. But that's really the downside - having sometimes to convince a doctor when they're like, I don't have the eight minutes to spend with the patient additionally, to speak with them about LDN. But I'm like, well first of all, you invest those eight minutes and they're going to wind up coming to you much less, complaining much less, taking up less of your time, because their pain is less, and if you can't do it, send me your Nurse Practitioner or your Physician Assistant. Let me educate them, and they can help the patients. It doesn't have to be you. As long as you're a doctor, there can be things that they don't quite understand, and you can help. You don't always have an exact formula on how to treat a patient. Sometimes, if the disease is not exact, then the medication doesn't have to be exact.

Linda Elsegood: So how can people get hold of you?

Dr. Goldstein: They can call my office, Asher Goldstein, 201-645-4336, and make an appointment, then we can take it from there. If there are physicians that are listening to this, and you want to spend some additional time with me, I'll spend half an hour or an hour. I'll go out to dinner, I'll have coffee; we'll figure something out, because for me to help a medical professional understand that this is about as benign of a medication as possible, and it can help all those patients, that when you see those patients on the list and you're like oh my god how am I going to help this person today?

I wish I found this medication years ago. Maybe I would have ripped the hair out of my head. I tell my patients this medication doesn't do anything to you, which is why there are no side effects. They're like well, why am I going to take it if it doesn't do anything to me? So, I say, this medication allows your body to start working for itself again. That's all it does. It blocks a receptor for three to four hours, that's it, nothing else. And it does that for three to four hours, then the whole magic happens - the magic of normal level of endorphins, that is. That is the secret sauce, right? Bring the endorphin levels back up to normal, and then the body has the fuel that it needs to do the myriad of chemical reactions that normal levels of endorphins allow.

Linda Elsegood: Well, thank you so much for sharing your experience with us today. I mean, it's fantastic what you've done in such a short period of time.

Dr. Goldstein: I look forward to helping more patients, and I look forward educating more medical professionals.

Linda Elsegood: Thank you, thank you. Good to see you. Hopefully next time, in real life

Dr. Goldstein:  Yes, thank you, and take care. You know, I give your story when I lecture. I say look, there was this woman who was told to park herself at the corner, and she refused to take that for an answer, and because of her, I'm here today.

Linda Elsegood: Any questions or comments you may have, please email me, Linda, 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.