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Radio Show interviews, and Presentations from the LDN 2013, 2014, 2016, 2017, 2018 and 2019 Conferences

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Natasha - Australia: Chronic Pain and Cancer (LDN; low dose naltrexone)



Connie - US: Hashimoto's (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!



Do you have LDN Experience you would like to share? (LDN; low dose naltrexone)

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Kate was diagnosed with Type 1 diabetes at age 7. Her diabetes and insulin needs were not changed on LDN. After treatment for Lyme disease with antibiotics and herbals, LDN gave Kate relief of her remaining symptoms. Finding LDN was like the magic bullet. Her Hashimoto's antibodies went up on LDN when the dose was too high. She is still working to find the right dose for her Hashimoto's symptoms, with headaches being her main side effect of a too-high dose.



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.

Linda: Today we're joined by Kay from the United States who uses LDN for Hashimoto's Thyroiditis and fibromyalgia. Thank you for joining us today. Kaye. Thank you for having me. So could you tell us how long ago was it when you first got sick?

Kay: Honestly it was probably 40 years ago. I'm 58 now and when I completed high school, I started having symptoms of thyroid problems. So it was it was a very long time. So what did they do at that time, such a long while ago? They told me it was anxiety and they totally the doctor totally blew it off and they never did any sort of testing. They never did blood tests. They didn't do an ultrasound; they didn't do anything. Even though I had a constant sense of a lump in my throat and issues with sleeping and anxiety, and quite a number of issues that come with thyroid problems. And it wasn't until after I was married and I had two young children and I was working full-time that I just simply got to the point where I just felt like I couldn't function. And I went to the doctor. And he finally took it seriously. That was a different doctor, but unfortunately my labs for my thyroiditis all they ran was simply the TSH and they said, oh you're perfectly fine and they diagnosed me with fibromyalgia at that time. So I was kind of stuck with that diagnosis for a period of time as well, without any real good answers at that time.

And that kind of progressed, and it was probably another five years or so before anything more significant came out of that. I noticed one day a very large lump in my throat and went to the doctor, ended up with a surgeon and had my thyroid removed, and they diagnosed me as having Hashimoto's. I had two different types of growths on my thyroid and a very large cyst, and the surgeon actually said that it was the most diseased thyroid he had ever seen, and he was absolutely convinced it was cancerous. It turned out not to be, but it was clear why I had been so ill and having so much difficulty in functioning at that point. 

Linda: Wow. So what did they put you on once they removed the thyroid? 

Kay: They simply put me on just a T-4 only medicine and I felt absolutely terrible, and I literally thought that I was going to die. I thought the doctors were going to let me die. At that point my children were probably 14 and 16, and I simply just hoped and prayed that I would live long enough to see them graduate from high school. That that was how bad I felt.  I could I could hardly function. I was continuing to work full-time because I needed to, but I did not have any emotional capacity to deal with raising teenagers and having a husband and living life. It was just incredibly difficult and I just started googling and looking for answers, and thank goodness for the internet these days, right, because you know we can find stuff we couldn't find before So, I ended up at a doctor that was more holistically minded, and that doctor put me on Armour thyroid, so I had the T-3 and the T-4, and I started to feel like okay, I can live now; I can start to function. But I was still having a lot of issues, a lot of fibromyalgia pain.  I was having terrible insomnia. I was on multiple medicines to sleep. Dealing with a lot of anxiety, IBS, TMJ; I've got a laundry list of acronyms that I was dealing with. I came upon low-dose naltrexone myself, and I approached my doctor and asked her if she would prescribe it and she said yes, that she had a number of patients on it and she was happy to prescribe it.  So I kind of got lucky in getting a prescription for it. 

Linda: How did it affect you when you first started? 

Kay: When I first started taking it, really the only side effect I had was just vivid dreams. And I think I started it I 1.5 milligrams. That was fine. Did that for two weeks, bumped to 3 milligrams. That was fine, and did that for a couple weeks. Then when I bumped to 4.5 milligrams, I started to have some of the vivid dreams, and I bounced back and forth between 3 milligrams and 4.5 milligrams for a couple of weeks until I could just consistently stay at 4.5 milligrams.

Linda: And how long ago was that?  

Kay: That that was about 12 years ago. 

Linda: Well so you've been on LDN a long time.  

Kay: I have been quite a while, and I'm still on it. 

Linda: And do you have any thyroid issues now at all?  

Kay: I'm still dealing with some issues. About 4 years ago I ended up exiting a very toxic marriage, and doing that helped tremendously in reducing the amount of stress and anxiety in my life. I ended up changing to a different doctor, who really encouraged me to change my diet dramatically. So I eliminated all grains and all sugar, and that has helped tremendously. Reducing the stress, getting out of a toxic environment is huge. Just the emotional stress that happens takes a very physical toll on our bodies, and I think that often we underestimate the impact of it. And so for me, low dose naltrexone is part of a bigger package of things that I do to take care of myself. It wasn't the magic elixir that solved my whole life problems, because I had a number of things going on in my body, and a number of things going on in my life that needed additional changes to really create an impact.

Linda: What about the fibromyalgia pain? Is that under control? 

Kay: It is really under control. I'm struggling with a torn rotator cuff, and so another problem like that, it still throws your body off. As you age other things start to go awry as well. But no as far as fibromyalgia goes; no I don't really have any fibromyalgia pain. In fact three weeks ago, I went on a hiking trip with a friend and I had no pain and no stiffness and no soreness after hiking like 15 miles a day through fairly rugged terrain. 

Linda: So that speaks volumes, doesn't it? 

Kay: It does speak volumes.

Linda: Now I probably know the answer to this question because you spoke about diet, which was going to be one of my questions. But because your doctor was looking at your whole body, not just your symptoms, did she recommend supplements for you to take as well?

Kay: This doctor is a male; it's different. He also was willing to prescribe low dose naltrexone, and he knows what supplements I am on, and he has not necessarily recommended that I change them, or that I add to it. I am on a number of supplements.

Linda: Do you take probiotics?

Kay: I do take probiotics. I also take magnesium, Vitamin C, Vitamin D3 and K2. Those are kind of my staples.

Linda: Yes, when I ask doctors what supplements they recommend, probiotics is always up there as the top one, as is Vitamin D. You're doing remarkably well. I can't believe that somebody who must have been like 14 at the time, had all these problems, and they were just swept under the carpet. But so many people tell me that years ago, and not that many years ago either, that it's all in your mind; there's nothing wrong with you; it's all in your mind, or you're depressed and give you antidepressants rather than finding out why you've got the symptoms, finding the root cause. I'm just so pleased that you have managed now to get your life back on track where you feel you're in control and you can enjoy a good quality of life 

Kay: Honestly I feel better now than I did 20 years ago. I have I have no anxiety anymore; I used to have a lot of anxiety. I had issues with sleeping; I am off all of my sleeping meds; I only use melatonin now for sleep. I used to live on over-the-counter pain medicines, Tylenol, ibuprofen; I only take them very very rarely now; maybe once a month rather than three times a day or more. Just so many things that have resolved.

Linda: That's amazing, because all the medications that you can take, some of them are quite toxic and also all medications carry the risk of some side effects, and the more medicines you take, the higher the risk of getting side effects, and then you end up taking the magic pill to combat the side effects that the original pills have made. So to actually cleanse your body of all of these other medications that you're taking, even though you're 20 years older now, you said you felt better; your body is 20 years older, but you're still feeling better than you did 20 years ago. That's amazing, isn't it? Apart from your shoulders - hopefully that will heal soon. How did you hurt it?  

Kay: I had a bone spur that tore the supraspinatus, which caused too much stress on the infraspinatus and so that one also had a tear, and kind of the whole the whole shoulder system just went downhill. We're still working on that. 

Linda: So you just want to rest it.  Are you, as much as you can? 

Kay: Trying to rest it, and then also exercise it and strengthen it, it’s working well. 

Linda: Well that's it: if you don't use it completely, you lose it. Well thank you very much for sharing your story with us today, Kay. Very remarkable. You're an amazing lady. 

Kay: Oh thank you, thank you. Now I just wish everyone well who tries the low dose naltrexone. Just don't underestimate the impact of changing little things in your life, because lots of little things add up to significant differences.

Any questions or comments you may have please email me, Linda, at linda@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.



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 I'm joined by Tracey from the US who initially took LDN for Hashimoto's thyroiditis. Thank you for joining us today, Tracey.

Tracey: Thank you for having me. 

Linda Elsegood: So could you tell us how easy was it to get your initial diagnosis of Hashimoto's?

Tracey: It actually was not easy. After I had my second child I could just tell, even though I had a child, the fatigue was extreme, hair falling out, inability to lose the baby weight, and just a lot of different things. So I went to a primary care. I did get tested and they did say I was hypothyroid, but it took until 3 years later until I went to a naturopath for them to actually test, which it's kind of crazy, because it's really just one test. They tested my antibodies and realized I had Hashimoto's. Because I got that diagnosis with the naturopath, I stuck with that office, because they seemed to be working better with me.

Linda Elsegood: Okay, so what was the length of time it took from when you had your child to having the actual diagnosis?

Tracey: I was diagnosed with hypothyroidism originally within six months, and they gave me Synthroid, which really did not help very much. I was still exhausted. Maybe it helped me about 15%, and I just kind of struggled along with that for about 3 years. I went to an endocrinologist. Same thing. They just said just stay on Synthroid. And finally, I moved, and I went to a naturopath. They did the test, realized it was Hashimoto's, and then also switched me from Synthroid to natural desiccated thyroid, which changed my life. It really did. I felt like I wasn't hypothyroid or Hashimoto's anymore. I still struggled a little later with some fatigue, but it helped me about 80%. Then, I guess it was around 9 years ago, my naturopath said there had been studies - the office really kept up with trends and studies - and they really researched a lot, which is another reason I like going to a naturopath; and they told me about low-dose naltrexone, LDN. I had not heard of it, and most people at that time, because it's a while ago, had not heard of it. He gave me some research. I did some of my own research, and I started taking it. I started taking it about five years into my hypothyroidism, so it was about a year after I got diagnosed with Hashimoto's. And I titered up, and it made a big difference within literally just two months. I know they say it can take longer, but for me I noticed within two months. 

Linda Elsegood: So it was like you say, a long while ago now, but did you have any side effects? Can you remember when you started? 

Tracey: Well I know some people take tiny tiny amounts and they titer up really slowly. I split one 4.5 mg pill into four, so I took a quarter of that for three or four days, and then a half for three or four days. I really didn't have any side effects. I think the first night I had a little insomnia, and the first three days some unique dreams. And that's really it. I was one of the lucky ones that I just didn't have too many side effects at all. I had energy within one or two weeks. I felt extra energy in the day, which was great, because fatigue was one of my bigger problems. So I never ever had really any bad side effects. 

Linda Elsegood: Wow. So, comparing your life now to how it was before you started LDN, how would you describe it? 

Tracey: It's just much better. Fatigue, as a lot of people know, can really be debilitating. It can just affect your whole day. I used to be exhausted from about one o'clock in the afternoon until five, and I would be in the middle of working, or when I was younger taking care of my kids and working, so I had to stop for three or four hours and sit down or lay down. I don't have to do that anymore. I've just been staying on the 4.5 all these years. Unfortunately, last year I got diagnosed with seronegative RA. At least that's what we think it is, and so I am looking at increasing that to the 6 mg because there's been studies since nine years ago, of using it for RA in a slightly higher dose. So I'm just starting to play around with that. 

Linda Elsegood: And how's it making you feel increasing the dose?

Tracey: I just started the 6 mg about two weeks ago. I don't notice a huge difference, but I do know my doctor told me that sometimes to change RA with anti-inflammatory reasons, it could take a month or two. So I'm just gonna keep going with that, because there are some other people with RA who I talked to that are doing really well on that dose. I only take it at night. I know some people dose twice a day, but I feel like my body needs the 18 hours to cycle through the whole LDN cycle.

Linda Elsegood: Okay, so are you following a regime from your naturopath, on diet and supplements as well? 

Tracey: Yes, I've been taking so many supplements for years, probably the typical ones that most people take, you know the turmeric and black seed oil, B vitamins, D, C, all of those. I also take resveratrol and glutathione just for liver cleansing, and I do I did the ALP diet when I got diagnosed with the seronegative RA. I started the AIP diet, and after the 30 day elimination, I moved into basically a paleo diet. No sugars, processed food, stay away from gluten. And that definitely helps me, about 20 to 25 percent the diet alone. I feel a combination between LDN, my supplements, my diet and I do take one other mild RA drug, first line drug hydroxychloroquine, so maybe between all of them they all work around 20 percent. I can get back to my normal self.

Linda Elsegood: How did you know you've got RA? Were you getting lots of joint pain? 

Tracey: Yes, it kind of came out of the blue. I do know that people that have one auto inflammatory disease are prone to get others. It really was out of the blue. One day for years, working out five, six times a week, hiking, yoga, etc, at the gym. Then I started to feel knee pain, and I thought it was from running too much, so I stopped running. And the knee pain didn't go away. Then I started to get wrist pain, and then thumb pain, elbow pain, shoulder pain, and that's when I knew this is not from exercising. And I was in denial for a month or two, and it was pretty excruciating, I'll say. It escalated very quickly, and from what I've heard from a lot of other people, that's actually common, unfortunately. So I started my process, going to my primary care, and they sent me to different doctors, and I finally landed at a rheumatologist. I'm one of those people where my blood work was perfect, my RA and lupus and all of those, ANA, were all negative. The only thing I had was high inflammatory markers, which show that you're inflamed and in pain, so you don't look like a crazy person. They just started examining my joints, and they call that seronegative RA. Some doctors call that inflammatory arthritis, with the hopes that it will go away, but next month will be a year or so.

Linda Elsegood: That's a long time isn't it? 

Tracey: Yeah; I don't I don't think it's going away. 

Linda Elsegood: Who is guiding you with your LDN? Your naturopath still? 

Tracey: The naturopath is still guiding me with my LDN and my supplements. Rheumatologists generally go right away to medication, pharmaceuticals, which I understand, but I take all my test results and all of the suggestions from my rheumatologist, and I go to my naturopath, and we discuss it, because he'll spend more time with me. We kind of agree on what the next step will be trying to take things conservatively. So that's how I landed on hydroxychloroquine, but also the diet and the supplements. Since nine ten years ago, there have now been studies for RA where they're using it in slightly higher doses, all the way up to 9 mg actually. He sent me all studies, and I thought I would go ahead and try that, and very slowly titer up. I like to do one thing at a time so I can see what's working. 

Linda Elsegood: Yes, it gets a bit confusing doesn't it, if you start too many things at the same time. 

Tracey: Right. I had started that hydroxychloroquine and thankfully had zero side effects, and I let that work a few months, and then then I started increasing the LDN. I've only been doing that about 12 days, so we'll see. Hopefully, in another month or two, because I think it will be gradual - I don't think I'll just wake up with no pain. I think it will be more gradual, looking at my pain level over a whole month versus just day to day. 

Linda Elsegood:  Yes, well the good news is I know of two rheumatologists that will actually prescribe LDN as a first-line treatment. The LDN Research Trust has been going over 18 years now, and the message is spreading well. It's not just naturopaths anymore. Conventional medicine doctors who find that their patients need extra help, and they've tried everything, and there isn't anything extra. Many of these doctors have looked outside the box to see what else there is out there that they can prescribe to help their patients. I know of neurologists, dermatologists, gastroenterologists, a lot of consultant doctors, who are interested in using LDN. When I started LDN in 2003 there weren't that many doctors prepared to even look at LDN. There were pockets of doctors all over. But it's a lot easier now for people to get LDN than it ever was before.  Are you still with the same naturopath that you…? 

Tracey: Yes I'm with the same naturopath for, I believe it's 10 or 11 years already. People can still see a rheumatologist or endocrinologist or whatever, but it's really nice to also have a functional doctor or naturopath to run things by them as well, or to find a doctor that mixes alternative, western, eastern medicine, and looks at all sides. A lot of the drugs for RA, multiple sclerosis, etc, Crohn's are pretty serious drugs with hefty side effects. I like that you know rheumatologists that will start with LDN first instead of running to methotrexate or these other low-dose chemo drugs.

Linda Elsegood:  Methotrexate, I know there are people who have said it's helped really well initially, but as you were saying, the side effects are high. They're very toxic drugs. 

Tracey: Very much even at low dose. 

Linda Elsegood:  If LDN if it's not going to do you any good it's not going to do any harm. It's not a toxic drug. It's safe to try without running the risks of getting awful side effects. So, what would you say to people who are skeptical about trying LDN, because there are still people out there who like alternative therapies and LDN is still a drug, and some people are like no, I don't want to take drugs, any drugs, doesn't matter that it's a low dose and it's not harmful, it's still a drug. What would you say to people from your experience about giving LDN a try? 

Tracey: Well, I had an excellent experience basically. No side effects. But I do know that some people need to titer up more slowly, which they can do. I just feel like the side effect profile for LDN is so minimal, and from what I know, and I have read quite a bit of studies, nothing, no side effects are permanent, and it's such a low percentage of people that continue on and the side effects don't go away for them. It has such a high success rate versus side effects. I just feel that they should research that, and I know occasionally somebody will say naltrexone, you know they'll look it up right away and they don't understand low dose naltrexone is different than naltrexone. Everybody absolutely has to know the two different situations, and just read the studies. I haven't found one study that says really anything negative. Like you said, the worst thing that will happen is three months later you find it didn't work for you. It helped me greatly with Hashimoto's, and it basically changed my daily life, so I'm hoping that will also change my RA effects as well. 

Linda Elsegood: Well amazing story, and thank you very much for having shared it with us today. 

Tracey: You are very welcome.

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 - 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