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

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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

 

 

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. 
 

 

 

This was an LDN Radio Show interview in 2022.

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 Dr Nasha Winters, who's also one of the LDN Research Trust Medical Advisors. Thank you for joining us today, Nasha.

Dr. Winters: Linda, it's so good to see you, and so good to be here with everybody else. I always enjoy these conversations.

Linda Elsegood: So, you're going to tell us about LDN and the future of healthcare.

Dr. Winters:  Yeah, you know, it's funny, because you and I, we've talked about a lot of different topics over our years together, though I’m going to spend the majority of our time today talking about where health care needs to go, and where LDN falls into that. I was actually looking back at my notes, I think this was back in 2016 or 2017 when I was at an LDN conference with you, where we were talking about why is this not part of just standard of care, this low-cost, highly-effective, very low if any adverse events, very multi-targeted in a lot of different disease conditions? It just still is a crazy thing for me to believe that this is still not included in standard of care, and that there are still so many naysayers out there in the medical environment. That is keeping people from having easy access to this very very supportive therapeutic intervention. So that being said, I think that is also just sort of an example of just how inherently flawed our medical systems are. And I think, depending on which side of the pond you live, that some people here in the United States think, “Oh wouldn't it be great to have a national healthcare system?” And then folks over in the UK look at us and say, “Wouldn't it be great to have access to more integrative functional medicine pieces?” And really, all of the systems globally are inherently flawed at this time, in the world around us.

And so, I just wanted to give maybe a little lay in the land to help people understand a few key things that have just happened in the last 50 years, to sort of highlight and stamp where we got off the tracks, and what it's going to take to bring us onto an entirely new path. This idea of health care, which I think is such a misnomer - it really is disease care, disease management - nothing about it is healthy or health-inducing or health-inspiring or health-creating. But we made a big shift after World War II. The whole planet had a collective experience with World War II, and as such, a lot of our resources got shifted of what we had access to and what we needed to sort of patch ourselves together. So you can appreciate why it came to be, but you can't appreciate that we're still staying in that mindset 50 years later. We moved into much more grain production post-World War II, just in order to keep up with the demand for more bread, which was deeply rationed during the world wars. Feed for animals, thanks to an increase in our concentrated animal feeding facilities, known as CAFOs here in the United States, to help feed the livestock like beef and pork. Specifically, we had the war on cancer which was waged in the United States in 1971, an act signed into life by President Nixon. It really was the first time we claimed the war on cancer, and 50 years later we're no further down the road with that. We started bringing glyphosate more out of a lab and into our world around us. Cigarette ads were only banned from TV 50 years. We finally banned them from TV, and yet they're still highly available to everybody, and a couple little warning labels on the packages has not changed our smoking rates much throughout the world. Berkeley Chemists in Berkeley California announced the first growth hormones that were later added to our food supply in 1971. We started using our first CT scans in London in 1971. We gave a Nobel prize to Earl Wilbur Sutherland Jr for discovering the mechanism of action of hormones, namely epinephrine, which started to really elucidate our stress response patterns. Yet we've not really incorporated that into medical practice. We started monocropping the world and therefore monocropping our microbiotic internal soil as well, which left us really with poor resilience to how we deal with disease management and disease prevention. And in the last five or six years we've even awarded Nobel prizes, very very high level Nobel prizes, to things like circadian rhythm biology, fasting and autophagy, and the microbiota and areas around the immune system, and yet ironically none of these amazing Nobel prize awarded individuals have their work adopted in the general standards of care.

So I give you that example that yeah, we're talking about it, but we're not doing anything about it, and it feels like I’m having the same conversation around things like low-dose naltrexone. So that's a piece I wanted just to kind of lay that framework to go wow, the problem. Right. What's the problem? So a little bit more before we talk about the solution. Take a breath Linda, and see if there's anything you want to add or further clarify from that whole soliloquy.

Linda Elsegood: I just found that really interesting about the facts that I didn't know.

Dr. Winters: Well, good, because I’m a little bit of a history buff, and so I really like to understand where we've come from so we can understand why we got to this place. But it also helps us create a new path forward. It's like we don't want to repeat history over and over again, so let's come up with something new. But just as I said in the beginning of our conversation, there's really nothing healthy about our current healthcare system, no matter where you live on the planet. It's a model based on disease management with no interest in prevention of the disease or creation of health and wellness. In fact, in the United States there's an organization called the CDC. Everyone's heard of it, the Center for Disease Control. And a few years ago, there was a secondary part of that title. It was the Center for Disease Control and Prevention. That last bit has conveniently fallen off their website, and you don't see that anymore, which is also very interesting and telling. And because I only know the stats from the United States off the top of my head, we're not too far behind any industrialized westernized country, or kind of neck and neck with regards to these numbers, so if you live in the UK or other parts of the EU, these probably apply to you as well. The United States is ranked 27th worldwide in terms of healthcare, and yet we have the most expensive healthcare system in the world, and we're also the country losing longevity while other countries are staying the same or improving their longevity. And a lot of our scientists and researchers out there are calling that loss of longevity “an era of despair”. The longevity is coming down because of people taking their own lives, so suicide, and opiate overdose, which starts to show you kind of this trend of just sort of a dissatisfaction of life, hiding or medicating the pain. And yet we don't have anything in our medical systems to really address those head-on.

The United States spends over 20 percent of its gross domestic product on healthcare, whereas back in 1971, seven percent. That is a giant jump. The average cost of a meal in a hospital, which is where we're trying to nourish the most vulnerable people, is a $1.37. Right now, the euro and the dollar are almost next to next, so it's about $1.50 maybe for the euro, but $1.37 is what we're trying to nourish people with. Back to health. And so the cardboard and distilled water that you could take would probably be healthier than what's being offered in most hospital systems, which is really unfortunate. These are just some things to keep in mind.

The other thing is cheap food leads to poor health, and there are food deserts all over the world that exist, that are keeping people in really underserved and disenfranchised communities even more oppressed in so many ways. And we have a terrible deficit of our nutrition education, and wellness education, in our medical schools, where less than 25 percent of normal medical schools are even offered an elective course in nutrition. We're out there trying to tell people how to nourish themselves, and yet we've had no training in the medical field to do as such.

So, a wellness ecosystem, that's what we have to start to think about. That's where we start to move into a solution. It goes above and beyond food, it goes above and beyond access to inexpensive highly effective therapies such as low dose naltrexone. And it needs to break away from this disease management model and move us away from sort of the three big drivers of this model, which are big pharma, big agriculture, and insurance. And that means even the insurance model we have here in the United States, or even the national health care systems in other parts of the world, the only way we're going to break these habits and change this trajectory, is by leaving those systems in the dust by completely getting out of them. There's a quote, I don't know if you, Linda, or any of your listeners know the British Indian philosopher and activist Satish Kumar. He's a really interesting voice, sort of like a hopeful future, with regards to health and well-being. And so I love this quote:

"Holistic thinking brings soil, soul ,and society together as three aspects of one big picture. This is the new trinity of our time. When we become single issue oriented, we believe that if only the world could achieve environmental sustainability, or if only everyone could practice spirituality, or if only we could establish social justice in the world, then everything would be sorted. But this kind of single issue obsession doesn't take us very far, because it's too narrow. All of these issues. all of these disparities. are interrelated.”

I really love that piece because it's going to take us moving out of the current trinity as a collective, to make a hopeful future for all of us. We need to reclaim our health. We need to reclaim our ecosystem. And we need to set a new structure.

One of the things I love to think about here is, wouldn't it be amazing, Linda, if we could all have basically insurance coverage or health care coverage; a community supported agriculture - we call them CAFOs here in the United States - wouldn't it be amazing if you basically were given a stipend for your food that comes from a local regional organic farmer and rancher orchardists, to nourish yourself and to nourish your family, instead of having to depend on some of those deserts -  food desert environments or fast food environments, or highly processed chemicalized food options, to feed the less financially stable of our communities. Wouldn't it just be amazing if that was just a standard of care, to have access to good quality food, which doesn't take that much to create. It just takes leaving the current system and the dependence on that current system.

For me, these ideas started to spread about 29 years ago, after my own terminal diagnosis, growing up impoverished, growing up in extreme trauma, growing up in an environment where I would have been considered one of those people that could never leave the system in which I was created, never leaving this sort of cycle of abuse and poverty and trauma and lack of education. Yet I managed to pull up my own bootstraps and do something different for myself. But not everybody can do that, or has the resources or the wherewithal to do that. This vision started percolating for me all those years ago because I was sick, because I was uninsured, because I was literally on my own, and on every level you could imagine, I started dreaming about, envisioning sketching about, making lists, exploring the world for almost the past three decades, to build a non-profit residential hospital and research institute For me, obviously the special focus is on oncology care, but also in prevention and wellness. So this Metabolic Terrain Institute of Health, that's the first of its kind, will be the template. The sort of pilot is being built in southeast Arizona in the United States, against all of the goliaths of big pharma, big ag, of insurance, because we're leaving all of those models behind, and we're literally changing the standard to cancer care and prevention, from the soil to the soul, and recasting cancer from a death sentence as it's seen today, into more of a manageable disease process. And you could put other diseases in the place of cancer. That could be diabetes, that could be Alzheimer's, that could be cardiovascular disease, whatever chronic disease du jour you want to put in that, that's what this campus is hoping to support. And so that trinity that Kumar talked about here is about bringing a convergence of talented like-minded individuals to the table, and systemizing a methodology that enhances patient outcomes, and prevents physician burnout. And scaling it by training physicians and patient advocates globally to get into a new narrative around health creation versus disease management. We've been spending the last couple of years making this come to fruition. Our physician reaches now over 88 positions globally, over 200 patient advocates globally, growing twice a year. We do courses ongoing, so that we can start to educate a new way of thinking around the world. Our goal before the doors of the hospital open is to have 500 physicians and a thousand patient advocates, and we're well on our way to meeting that piece here, because we know it's just the start we need right now. For instance, there are only 12 million oncologists in the world, and we have too many patients needing them. There's not enough. We have to get folks trained, and more and more doctors are leaving general family practice now, and going into specialties, which is kind of leaving the general public in trouble. We're trying to change that need, and then we're also simultaneously building and launching a data platform that collects our information to show that this new methodology, this new systems thinking, this new collective networking global environment, is in fact lowering healthcare costs and improving patient outcomes. To show that, because we hear well, there's no research in this well, there's no research because there's not a model to research. All right, we all have our n of ones and our little integrated practices, but when you put a bunch of us together and that data comes into a really robust platform, we can show in real time the dents we're making.

That vision of this hospital where folks can come and immerse themselves, and show themselves again how to live healthy on an unhealthy planet, cost share their supplements, cost share their imaging, costs share their off-label drugs costs, share their pharmaceuticals, their other interventions, that they need for their health to thrive. That makes a huge difference. I don't know what it what it is for you guys in the UK, but in the United States the average American spends $20,000 each year on healthcare. That's just their insurance premiums, their deductibles and the out of pockets that aren't covered by insurance. That's the average, which means there's a lot more people paying a lot more than that. And if you want a truly integrative innovative approach, you're going to be paying a heck of a lot more than that. So, we were imagining, can you imagine taking that 20 grand and putting it into something that's actually health creating versus disease mitigating? What a difference that could make in a very short period of time. And then also, this move that many people are hearing about, to sort of a decentralized financial structure where you're looking more at sort of tokens, and sort of the cyber or the crypto currencies and whatnot. There are massive moves happening right now that within five years, this decentralized financial model that shows extreme transparency, so you really do know the true cost of your health care. And where those funds are really going will reflect that probably 90% of all the money spent on health care today is actually a huge failure, and not doing anything to change people's healthcare status. The overhead to maintain the monster model that we have that is clearly ineffective, is needing to be deconstructed and put into a whole other financial structure. So that's happening.

Then, those folks saying that there's no research in this, well no one wants to fund trials like this, and this type of health care does not put everybody in the same room and give them all the same treatment and expect a miracle for each individual, just like Linda. You and I have seen patient after patient after patient for just LDN alone. Look at the variability of who needs to have their dose in the morning, who needs to start at a micro dose versus the 1.5 milligram, who does better, who only needs 1.5 milligrams to derive all the benefit, who has results within a few days, who takes a few months to get the results. That alone for that single agent shows the incredible diversity of our health population, that is not given any credence in our standard of care models of health today.

So this is what's so fun to me, of like re-envisioning what we're building outside of this, and what needs to happen to make this vision come alive. A lot of that as well means we have to build it from scratch. We have to build it from scratch so this non-profit, we're taking philanthropic monies, we're taking grants, we're taking research dollars to build this model. Because of the cost share, we're even able to keep those that have the means into a lower cost cash pay model. We won't be accepting insurance of any kind from anywhere. If people want to submit it to their insurance, if they still have standard of care, they're welcome to do that. But we're very confident that what we could offer would be far less expensive and far more valuable and far more impactful than anything they're currently experiencing. You probably hear this all the time, and experience it. Especially my folks, who are in national healthcare systems, when patients say to me, “Well, I can't afford that, that's out of pocket” and I’m thinking “Well what are you spending your money on, like where are your priorities.” Health is our wealth. Without health we have nothing, and for people like you and I, who've experienced the side of the pendulum where health was elusive to us, we really value the importance of turning over every stone and recognizing that to actually survive, we're going to have to leave the system and do a little bit more on our own. You and I are the weird unicorns, in that most people don't even know that's available to them, or are truly poorly resourced in a way that they can't get access to that. We know that this future healthcare model needs to create a new standard of care.

I know I covered a lot here, but I just want to start to paint a picture of what is being built. I’ve been told for 29 years this could never happen, and what I’ve seen happen in the last 10 years, and in particular in the last two, it's happening. And now that more and more people are coming together collectively into our network, and other little islands and pods and silos of this happening all over the planet, we're all finding coherence and resonance with knowing that we can't fix it, as I tried doing in the first 20 years of my practice. I can't fix the broken system. It exhausted me, it burned me, out it broke my heart, it made me physically ill, going in time and time and time again trying to fix a broken system. So I realized about a decade ago, I have to completely get out of it and build a new one. Luckily I keep finding sort of tribal members all over the planet, that are interested and curious enough and willing enough to do the work to do the same.

I was excited that we got to have this conversation today, because I feel like what you offer. and what the Trust offers, are opportunities, resources, awarenesses, that there are so much more than we're just being spoon-fed. These are the conversations that I hope are just the beginning for you and your listeners, to help us create collectively a new and hopeful healthcare future.

Linda Elsegood: If there are any medical professionals or patients out there who really want to back and support you, what can they do? How can they start the journey with you?

Dr. Winters: Well, definitely start by going over to https://mtih.org which is our non-profit hospital and education platform. That stands for Metabolic Terrain Institute of Health, mtih.org. You can get a ton of information there. There's even a little ‘how can I help’ button that shows like, you can help in donations, you can help in volunteering your expertise. We have a CEO who was the head of a billion dollar revenue non-profit hospital who's come to the table because he did that work for 26 years, and saw what a dead end it was. So he's jumping on board to help us with his expertise of how to build the new hospital system. For things like the regenerative agriculture environment, we have farmers and ranchers coming too, because our hospital is on a massive campus where 75 percent of the campus is a food forest. So we're able to nourish people. Our patients that come to this environment will be in the fields with the farmers, as well as in the kitchen with the chefs. But they're also going to be in the fields, in the kitchens, with the doctors and the nurses and the adjunct. The healing community folks are realizing what it takes to create health and prevent disease, and so those types of options are coming up. Then, if you are a physician who wants to learn more about this truly innovative methodology and systemic thinking model, of how you want to apply it your own patient practice, whether you work with cancer patients or not, it applies across the board. We offer courses twice a year. Our next one is September 2022 - we offer it in September and February of every year, and then we have the same thing for our patient advocates. If you don't have a medical degree but you also want to be part of this movement, we offer a patient advocacy training as well, which we're also bringing in ways to help you monetize it and create a self-care program for yourself, but also create a career path, because we need a lot of bodies, a lot of like-minded souls to make this mission come alive.

That's really amazing, absolutely fantastic, and so needed literally across the globe. I used to think it was just a problem in my own town in Colorado, and then I realized oh no, in the US; oh, and then I realized oh Canada, and then oh the UK. It's like it expands beyond that of all my world travels and all the conferences, and all the patients I consult with globally, and their health care providers globally, this is a global issue and it's going to take a global shift, and we need to do it together.

Linda Elsegood: We wish you every success, thank you

Dr. Winters: Thank you Linda, thank you for the opportunity to talk about my passion and purpose.

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.

 

 

Carol Petersen, RPh, CNP - Discussing Healthcare, LDN Radio Show 13 July 2022 (LDN; low dose naltrexone)

SUMMARY
Pharmacist Carol Peterson is most interested in successful aging, working with bioidentical hormones. Along with a manufacturer of advanced nutritional systems, they developed a carrier solution with phospholipids for topical medications, that greatly enhances absorption. Another focus on aging is Beta 1,3 Glucan, which has a very positive effect on the immune system, important in autoimmune disease. She also discusses hormones and hormone testing. Her website is www.thewellnessbydesignproject.com, and she offers a free 15 minute get acquainted conversation to see if people are interested in what she can offer.

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're joined by pharmacist Carol Peterson, who's going to explain the new exciting things she is embarking on in her life. Thank you for joining us, Carol.

Carol Peterson: Thank you so much Linda. I'm not so directly involved with compounding LDN anymore, but I do follow this. I'm really interested in the most successful aging we can have, and so I spent many years directly with bioidentical hormones, which I think are a huge piece for people. And I'm continuing that work. You might find this interesting: I'm working with Quicksilver Scientific, and they've developed a dosage form that has phospholipids in it. Depending on whether the substance is water soluble or fat soluble, you can do a nano emulsion or a nano liposome, depending on your substance. And we're about to reach out to pharmacies to compound with this for hormones. One of the first pharmacists I talked to about this does a lot of compounding with LDN, so his question to me was, wouldn’t this be adaptable to LDN? Probably yes! We haven't done that yet, but it would be a phospholipid dosage form that you could use under the tongue. And in this case, it's going to be extremely well absorbed. We have really excellent data that using only tiny amounts of hormones will give you good blood levels and good function. So this could open up a whole wide area for a new dosage form for LDN, and maybe if we talk in a year, it'll be out there everywhere, I hope. Another potential would be to use it on the skin, because phospholipid dosage forms go through the skin very well, so it may be that tinier and tinier doses of LDN would be appropriate. It was kind of exciting for me. I'm also working with another two companies joined together, and they are US Enzymes and Master Supplements.

All my years of working with hormones is such a big pillar of having a successful aging process. I've added another two pillars. I think this is so important. A column of what's going to hold you up for your aging, and I think this is quite phenomenal, and just yesterday we've introduced, with Master Supplements/US Enzyme, a beta glucan. Why this should be interesting to anybody who uses LDN is, it's such a major stimulator of your immune system. This company has gotten Beta 1,3 Glucan, which has a linear, and they say has the most positive effect on your immune system, and should be applicable to any autoimmune disease. So that's kind of exciting for me. There's all these bridges from one place to another, and what else can I say. I'm doing some consulting online, I have a Facebook page and I've named it the Wellness by Design Project. I have a website, and I do individual consultations. If people want to work with me, they can. And this is not a big part of what I'm doing. I'm more interested in getting information out there. I have a blog I've been writing for the A4M website, worldhealth.net, and this gives me a huge voice that I was actually missing before. And I really am interested in helping a huge amount of people, and really Linda, that's exactly what you've done. I am just in awe of what a person can do when they're determined and what they can build. You are such an inspiring person to follow. So that's where I am right now.

Linda Elsegood: Wow, it's really exciting, isn't it? You've got your platform, and now you're going to go for it, which is amazing. Tell me a bit more about the carrier that you can put on the skin for LDN. Not being medical or having any pharmacy background. What is the difference between what you're talking about, and liquid or topical lotion?

Carol Peterson: Whether it's your mucous membrane in your mouth which, except for the mucus, it's skin too. And your whole esophagus is skin too, if you turn it inside out. But what happens is that you get an enhanced absorption with the phospholipids, and these are actually good for you too. Your skin, every cell in your body needs those lipids, the phospholipids, to put in their cell membrane. It actually could be used as a supplement all on its own. Therefore, I'm really excited about this, because you're feeding the body also, with the dosage form, instead of introducing chemicals, which I'm really against. I think there's a danger in the compounding world, and I think people should pay attention what their stuff is put into. I had a call from a woman, had a nice conference with her, and she called me because that was her number-one concern with a bioidentical hormone product, and she finally looked at all the ingredients in the cream base that she was getting, and she was horrified as she looked up every single one, one by one. That's 100% of what I'm concerned about. If you're using something that you're going to be using all the time, you shouldn’t be introducing things that could be potentially harmful or accumulate. We've got to consider our poor livers, because we're asking a lot of our livers in this toxic world, so there's no sense in adding to that toxicity. I guess we want to be using some things to help us, but don't introduce unhelpful things along with it.

So it's just phosphatidylcholine and different assorted similar molecules, and there's I think there's a little MCT oil in that. Lecithin has a phosphatidyl choline and associated molecules, so it's kind of an interesting thing, and I'm certainly going to going to plant that bug into your compounders’ ears when we get it out there. I think this dosage form has much more applications than just hormones.

Linda Elsegood: Would it be a case of using less LDN, which would make it more effective in that way, or would the dosing remain the same?

Carol Peterson: Probably the first thing to do would be to try equal dosing and see what happens, but potentially you need less. I'll use a hormone analogy like progesterone. I'm really against using the low-dose progesterone over-the-counter creams where they deliver 20-30 milligrams of progesterone, and women actually do have a hard time with this. They stimulate estrogen, and yet can't fill in all the things that progesterone needs to do with that little amount. They're miserable and they hate progesterone, that woman who is so anxious and can't sleep and irritable, has water retention, breast soreness. She needs like 200-300 milligrams, maybe in a cream. Then when you think about the rate of absorption through the array of creams available in compounding, you may have only 10% to maybe a maximum of 80% absorption. That's a thing that people don't understand. But with the phospholipid progesterone, Dr Shade, who is the owner of Quicksilver Scientific, said that he was able to get a luteal phase of 20 nanograms per deciliter. This is high-level phase level with only 20 milligrams of progesterone, whereas I just said it might take 200-300 milligrams to do that adequately. For a woman a lot of the times in conventional medicine, those low-dose progesterones are poo poo because you can't see it in the in the blood, and of course you can't see it because it's so tiny. It's just too weird, so I'm a real advocate of making sure there's enough. Probably there'd have to be some adjustment with people, and what's working, what's not; or maybe something's not working so well. Maybe it really is an absorption problem with some people who are not getting the results they could be from LDN. Changing the dosage form might be just the key.

Linda Elsegood: That's interesting. For people listening who think that you'd be able to help them with their issues with hormones and so on, how do they get hold of you? Could you give us your website address?

Carol Peterson: It's www.thewellnessbydesignproject.com. I chose it. It's rather long, but this was my web designer's idea. “Project”, because I used to be more black-and-white and think people should be able to be on a path and be an advocate for what they they're talking about. I was pretty judgmental. Now I realize that we're all in a path to make our health better, to make our whole lives more vital, and we're not going to get to perfection. But we can be on the path and get there, and that's why I said I want to help people with the project of themselves, and help them get better, get as much better as they can. As far as that's concerned, unless you're dead, I think you can improve, would you agree?

Linda Elsegood: Absolutely! So once people contact you for a consultation, how long is the consultation?

Carol Peterson: I'm offering a free 15 minutes so we can get acquainted and see if people are interested in that interaction. Why I think that's important is, whenever you're offering the gift of information, or you're the messenger, it might not be the right person at the right time, and I don't take that personally. I just feel that I've put a piece in the puzzle, and maybe it's going to help later on with somebody else. But if that person is ready to work with me, we can figure that out in 15 minutes. Then I offer our consultations, and then I offer a more extended program that would last over six months with more intense coaching.

Linda Elsegood: And does that involve any testing?

Carol Peterson: I like to see some testing. So much of the results, it's always clinical, whether it's LDN or whatever, you can't measure specifically very well. What your outcomes are, if you don't have the clinical outcomes, if you're not getting the results you want, testing makes no difference at all. What are you testing for? You can't measure what the person tells you about how they feel, how they're able to operate in the world. That's like 99% of what you're doing. But if I have somebody who's really rather complicated, I do a life extension panel. I like the elite panels for men and women. They measure the pituitary or growth hormones, thyroid hormones, adrenal hormones, sex hormones, Vitamin D. You have this whole measure, plus the blood chemistry, plus the blood differential, plus all the lipid stuff. It takes a lot of vitals of blood, and patients can order this themselves, unless they're from New York. It's self-directed. You can get your own test. I love it because you get a bigger picture. If you just go in and have your sex hormones measured, like people will do, it doesn't place it in the whole realm of all the endocrine system.

I have a hierarchy of hormones. The insulin - glucose is the most important, the most primitive of our hormones, and that makes so much difference. What we are going back to: we're going back to our nourishment, what we eat, how we eat. If that step isn't taken, you could be messing around with sex hormones all day long and not get whatever you want. Then adrenal hormones: if you don't have good adrenal activity, this is like life or death. This is quality of your life. Plus, if you need thyroid, thyroid becomes impossible to take if your adrenals aren't supporting that thyroid activity. Then finally, sex hormones. A lot of people know they have a hormone problem, but they'll think I know it's my sex hormones because I'm menopausal, but you really need the whole picture to do that justice. So, I like that more comprehensive test. If somebody is really not understanding what's going on with their body, and there's a lot you can get there, a test is no good if it doesn't give you direction. I was really happy: I arranged for a test for a young woman with difficult periods, a lot of pain, and putting on weight and acne, and I chose a panel. I was so happy, because a lot of the things were abnormal, and if you don't have a test that shows you where the abnormalities are, you can't do anything about it. You have no direction. How many people go to the doctor and have a test and they say oh, everything's normal. No, you haven't looked at the test results well enough, or you haven't picked the right test to use for that patient. So that's another piece of things that are going on.

So many people are told, especially with the thyroid, that it's fine, your levels are great, there's nothing wrong, when people are feeling really ill. You know yes, there is something wrong. I myself have secondary hypothyroidism, and that is my pituitary TSH, which is what they measure all the time, is simply always low. It's low if I use thyroid, it's low if I don't. I think my pituitary was poisoned. It came from an area of a country with the biggest amount of atrazine in the ground water, and atrazine is a pituitary poison. I've been working on that. But what do you do when your TSH is so low, and your other pituitary hormones are low? You treat what follows. You treat the thyroid, you treat the adrenals, you treat the sex hormone function. That's how I've been managing myself. But interesting enough, a doctor can look at you, and you have every symptom of hypothyroidism, and they would take a look at a very low TSH, and say you're hyper, and that's that, because they haven't even thought about the pituitary actually producing that hormone, and being unable to. It's shocking to me how many times they see this.

I follow a lot of Facebook pages. I do follow one on LDN, and I follow menopause and osteoporosis, and <perry>. There are so many people out there that are suffering needlessly, and sometimes they write about their pharma experience. One drug after another. And their lives are devastated. I want people to know I'm a pharmacist, and I would say renegade pharmacist. Drugs do not return you to health, never ever. To go down that pathway, as soon as you start it, the drug is going to cause damage, and create more symptoms of discomfort. You're going to add another drug, and another drug, and you are doomed to a marginal existence, and none of this is necessary.

Linda Elsegood: Well, that's amazing.

Carol Peterson: Everybody is aiming for their optimal health, right, and it's achievable. Always, the people with the most trouble have the greatest gains to be made. I'm reading an old book by Andrew Saul called Doctor Yourself. I love the philosophy, but he is really making a point, over and over and over again: things that we consider illnesses are most often deficiencies in something, and we know enough about biochemistry now, and in physiology we're able to target certain nutrients for certain things. The more you know about that, the more tools you have to help yourself. That's what you have to do in the end, when you go to a doctor with whatever you have, you should be in charge. You are the person who is the buyer, and the seller is trying to sell you information, or a protocol, or something to do. You have to keep that in mind. You would spend a lot more time comparing cars than you do comparing what that doctor is able to offer you. And doctors have forgotten that they are a seller, partially because they offer you a pathway, and they're not allowed to deviate from that pathway they're offering. We've got our medical system so entrenched in, like, flow chart medicine, that doctors can no longer develop a patient-doctor relationship, where they're interested in the patient, and go right along with the patient, and examine the information out there. When you think about it, we have a whole world of smart people in country after country after country. We have no database that we could really touch into for finding that person, say in South Africa, who's gotten wonderful results doing a certain thing. We have no way of knowing that. In this age of information, not having access to the world's information on how to keep healthy and at optimal health, it's sad really, We should be able to do that.

Linda Elsegood: Well fingers crossed that you're laying the foundations for that.

Carol Peterson: Okay!

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.

 

 

LDN Research Trust - Low Dose Naltrexone Angie Fielden, LDN Specialist shares her experience of Low Dose Naltrexone.

Please visit our website https://www.ldnresearchtrust.org, which is packed with information on Low Dose Naltrexone (LDN) for Autoimmune Conditions, Cancers, Chronic Pain, Women's Health, Children's Health etc., plus we have a very active FB Closed Group https://www.facebook.com/groups/LDNRT/

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.

Solutions Pharmacy is licensed in 20 states and located in Chattanooga in Tennessee. They have led the compounding industry with excellence for over 60 years, specializing in LDN, hormones, fibromyalgia, pediatrics, and autoimmune conditions. They offer an LDN program to patients who need help starting LDN. Call 423-486-1811 for a consultation.

Today we're joined by Angie Fielden from Solutions Pharmacy in Tennessee. Thank you for joining us today, Angie.

Angie Fielden: My pleasure. Thank you for having me.

Linda Elsegood: Now, I know that you took the Masterclass, which is totally amazing, and you did really really well, and you've been using that knowledge; and, I understand you've been holding monthly, public, free seminars. Could you tell us how well that's going?

Angie Fielden: It's going absolutely fabulous. The lowest class we had was the very first one and it was kind of a quick turnaround in that we had two people in there, both people signed up for our LDN program. We average around, I would say, 5-8 people each month. It lasts about an hour to an hour and 15 minutes. The educational part is around 45 minutes, and then there's Q&A time, and then afterwards we always have our LDN books up there, and they'll usually have a few people that will buy those. We sign them up for their consultation. If they choose to go forward, and we usually have about 80 to 100 percent that sign up, and they desire to start on LDN.

Linda Elsegood: Okay! You say sign up to your program. Tell us more about your program.

Angie Fielden: When we decided to launch an LDN program, it was because we noticed that there were a lot of physicians, a lot of providers in general, that didn't know a lot about LDN. What is low-dose naltrexone? So, we thought well, let's do an LDN program where we can send this information about our program to providers to let them know we're going to offer a service for you, and this is what the service is. We do free educational seminars, or we will educate patients one-on-one. We will do a patient consultation for that provider. Basically, the patient fills out an assessment form on their medical history: what their issues are and why are they seeking help for that medical condition. We then decide if we think they're going to be a good fit for LDN: is LDN going to potentially help them with this disease issue or case that they have. Then we take all of this information with, let's say they have a disease state of fibromyalgia, we're going to pull some studies on fibromyalgia patients that used LDN and let the providers see how their condition was helped with LDN. We always send a study or two about that disease state that that patient has along with their assessment form, and along with basic information about LDN itself. Then we also provide them with an Rx prescribing form that has the starter - depending on how we were going to start that patient. There are several different starters, so we would check which one we think would be best for that patient. And then we also tell them about maintenance. We also have a patient information sheet that we give each patient as they pick up their prescription. The information sheet tells them exactly how to take it, and some what-ifs, and we also put a little encouraging thing in there: this is the reason why you want to stay with it; it's not necessarily going to be everything you need within two to four weeks; it might take a little bit longer. So, we kind of give them a little motivational in there. We also give the patients ability to call us if they feel that they need to not titrate up to the next dose yet because something is going on. They call us, so we take that time that a patient would need to speak to a professional off of the provider, and we do that ourselves. Not me, but one of our pharmacists does that. Our pharmacists are the ones that talk to the patients about any medical issue. What my job is to get the information to the providers, the correct information. I extract the information from the patient, put it on paper, and then I give them over to our pharmacist, and he conducts the patient assessment. Then I'll put all the paperwork together for the provider and get that over there. So that's kind of how the LDN program works, and it comes at a very affordable price. They use us ongoing; we do follow-ups with the patient at 90 days and at 6 months, so 3 months and 6 months we do follow-ups. And by that time, they're generally pretty good. And we send the follow-ups to the provider as well.

Linda Elsegood: Well, what a service! I mean, this is what the LDN Research Trust was hoping, you know, educate the pharmacists, get the pharmacists happy for the pharmacist to educate the providers, because I don't know how many staff you have in your pharmacy, but you know there is a limited number of hours in a week. But once you've educated one provider, that one provider could treat, you know 100-200 patients.

Angie Fielden: Yes.

Linda Elsegood: And not only do you get the opportunity to educate more providers, the provider that is using LDN can see that LDN is helping their patients. They then tell their other medical professional friends and that's how it snowballs isn't it?

Angie Fielden: Yes, and just last week I had two luncheons, so as the marketing director, what my job is is to go to providers’ offices and deliver information about what we compound. LDN was my main focus this last week, to two places. They were arthritis centers, so they can really use LDN. And it was surprising that neither of the physicians at this one office knew anything about LDN. I do come across that all the time. I presented the information - I already had everything printed out to where they could just go through it, just like this. I give a quick read, If they want to just read. Basically, I kind of regurgitate to them what's on that paper quickly, so they don't have to read it; and then usually I tell them a success story. I have a success story myself. I'm using LDN, and it has given me my life back. But we also have a patient that is a poster child. She is a fibromyalgia patient, an RN, and she'd been out of work for 20 years. Her story is phenomenal, and I love telling that story to our providers. Their ears kind of perk up, and they say, oh tell me more. They're really excited about learning about it. So, my job is so fun because I'm the first point of information for them. Then they have access to our pharmacist. They have also access to come to one of our free public seminars. We have three providers that are coming to our next seminar. It's so exciting, and you're right, it trickles down, and then they can help hundreds of patients. That's why I'm so passionate about being an LDN Specialist. I just absolutely love to see that trickle effect of helping, and people are saying “it saved my life, it's given me my life back; my husband has his wife back; things like that is what keep hearing.

Linda Elsegood: So, what conditions would you say that your patients are using LDN for 

Angie Fielden: We've had some rare conditions as well. Fibromyalgia, arthritis, and pediatrics are our top three conditions that we see a lot. But we've had some cancer patients and we had a chronic regional pain syndrome which we're just now dealing with, that provider and patient, and it's so exciting to see how this girl is going to progress in getting her life back. She had been in a wheelchair. She's a microbiologist in her college at Tennessee Knoxville, and it's phenomenal to see her be able to do everything she's doing with the condition that she has. We really feel, and the provider feels, that this may be exactly what she needs, and he's familiar with LDN. So I'm excited: she'll be starting it in about two or three weeks, when she graduates; or any time now she'll be starting it, and I'm excited to see how her life is going to change and improve.

Linda Elsegood: So, all this education that you do for patients and providers, how do you go about letting them know? I mean, obviously you can only visit so many offices in a week. Do you advertise in any which way shape or form?

Angie Fielden: In the lobby we have a pop-up banner that talks about LDN, and conditions and symptoms, and that if you're having certain symptoms, you may be interested in our in our seminar. We get a lot of seminar patients that way. We have a banner that we put out by the roadside. In fact, let's see if you can see that tall banner.

Linda Elsegood: Oh yes! 

Angie Fielden: It says “free seminar tonight”, so we'll put that out on seminar night. We do quite a bit on social media, we do our website, we have a banner on our website about the LDN seminar, we have an LDN section on our website - so we get a lot of people from our website that sign up for our free seminar because they're learning about LDN. We've had people that found us from your website actually, and have come to our seminar by seeing that there was an LDN Specialist there. Then they check out our website, and then they end up coming to the seminar. It's so cool to see how we're all working together to help any and everybody in all different places. So those are some of the advertisings we do.

Linda Elsegood: What forms do you compound LDN in?

Angie Fielden: We do mostly capsules, but we have done a liquid formula a couple of times. One was for a cancer patient, and he could not swallow, so he had a feeding tube and had to put the liquid in a feeding tube. And he remarkably made improvements pretty fast once he started. The provider wanted to start at a higher dose - and this was this is what's great about the LDN Research Trust and being an LDN Specialist - I was able to work with you, Linda, and you helped put me in contact with some of the speakers that spoke on cancer, and I was able to email them and get two suggestions from two different people about where to start with this case. This is a unique case. This guy is stage four cancer, where do I start? They both told me the exact same thing. It was phenomenal, and it's so refreshing to know that we're going to get the exact information needed. It's going to be precise. It's going to be consistent with each other. They both told us to start at a higher level. This is a case where you don't titrate up. You go ahead and start at the four milligrams. Time is of the essence, and we have to act quick. And the patient began to turn around! It's another one of those stories that the wife, when she contacted me, said he is home now, he is no longer on a feeding tube, he's still on his LDN, his seizures have stopped, his pain level is manageable. It's just phenomenal to see how well LDN is helping.

Linda Elsegood: Well, that's good! I mean, the LDN Research Trust has been going over 18 years, and we have amazing people on board who don't mind sharing that knowledge, because they realize they are one person. They can only treat so many. But if they can help educate other providers, the number is infinite, isn't it? 

Angie Fielden: Don't you see also that they all equally have the passion to help people? That's what it seems like to me, that the passion that everyone holds, and that's why they want to help everybody.

Linda Elsegood: Exactly, exactly! So, if you were going to make an appointment to see a provider, and if we have providers listening thinking “I can't dedicate hours to learning this” you know, initially how long do you need to talk to a provider?

Angie Fielden: What I would need to talk to providers and what I actually get are two different things. At one of my luncheons, I had 20 full minutes. That's a long time to have with a provider. At a luncheon you normally don't get that. You might get three to six minutes, which isn't much time. You're regurgitating as quick as possible. Thankfully, God gifted me with fast-speaking ability. That's why it's crucial that I take an information packet that is fully able to teach them what they need to know, so I'm going to give them a snippet of what I’m actually handing them. I average five to eight minutes, I would say, per provider. But where they really learn is probably the written information that I give them, and it's a packet, maybe 20 pages long, but they're in different forms, like the information packet that you guys have on your website for providers. That's a quick read. They can read that and learn quite a bit about it. We have other forms. We always give them enough information that they can learn more about it. 

Linda Elsegood: It's a balance, isn't it? Give them too much and they don't want to read it because it's going to take too long.

Angie Fielden: Correct.

Linda Elsegood: But it's got to be long enough to pique their interest to get them to want to read more.

Angie Fielden: They love the studies, so if I give a study according to what types of patients they see. it sparks their interest. Usually I will give them one or two studies and that's it, and I highlight the conclusion - they know how to find it, but I usually highlight what I really want them to read, so that it will spark their interest to want to read more about that study. I think the studies help, that one quick information sheet helps. I give them the Rx form that is personalized to them, so it makes it so easy for them. I actually give them a sample form filled out so that they see very clearly how easy this form makes your life. A lot of people e-scribe now, but what my form can do for them is tell them how to write the directions, or how many milligrams, how to titrate it up. I also give them that patient information sheet, so they know exactly how to educate their patients on what they're going to be doing so. I think it's not as much the time I’m able to speak with them as much as it is the information I’m able to give them. Doctors are busy nowadays, and they don't have a lot of time to read or to research. So I’m hoping that I am shortening that time frame for them and they can learn quickly

Linda Elsegood: I know that you ship LDN to many states. How many states is it you ship to?

Angie Fielden: We're licensed in 20 states, soon to be 21. We ship an average of 400 packages a day; and then we have a lot of local.

Linda Elsegood: I'm moving ahead here with my thoughts: for people who would like to attend a seminar who live in a state that is too far away and can't get to one of your in-person events, are you thinking later of having them as a zoom webinar, where people can participate from those states that you could ship to?

Angie Fielden: Yes Linda, that is coming. We're so excited about it. We wanted to do several live seminars to get the pharmacist, because the pharmacist does the lecture in the PowerPoints. I open this up; he does the lecture in the PowerPoint; and then I do testimony, and tell them about our LDN program. It's pretty quick like that. We will have a recorded seminar for physicians that our pharmacist in charge is going to deliver, and then we'll open up a live portion where physicians can ask questions; and then we'll also do that exact same exact thing for patients. So yes, that is coming, and we're super excited about that. We probably will develop that this summer, so within the next couple of months, I would say, we'll have that ability. There are a lot of patients that ask us about it. They'll happen to follow on our website, see it and ask about a recorded version, and so our physicians are asking do you have a recorded version. It is a need that we need to fill, and we are going to be working on that very soon.

Linda Elsegood: Well, all I can say is we wish you every success! Anything the LDN Research Trust can do to help, just ask. We look forward to interviewing you again on your next stage. 

Angie Fielden: Thank you.

Linda Elsegood: Solutions Pharmacy is licensed in 20 states and located in Chattanooga, Tennessee. They have led the compounding industry with excellence for over 60 years. Specializing in LDN hormones fibromyalgia, pediatrics, and autoimmune conditions, they offer an LDN program to patients who need help starting LDN. Call 423-486-1811

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.

 

Lynn Gufeld, AGACNP - LDN Specialist (LDN; low dose naltrexone)