LDN Video Interviews and Presentations

 

Marilyn - US: RA Pain (LDN; low dose naltrexone)

 

 

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

 

 

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. 

 

 

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

 

 

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.

 

 

Tim - England: Eye cancer (2022) (LDN; low dose naltrexone)

Approximately 12 years ago, Tim started to lose the vision in his left eye and was told he had an ocular tumor. He had 2-3 years of treatment, but had to undergo removal of the eye. Eight or nine years later he developed a cancerous lump on his thigh that required several surgeries. His cancers spread, and he had more surgeries. Then he discovered LDN and he started feeling better quickly, and after five scans and 15 months, the tumors are actually reduced in size. His daughter is on LDN successfully for Lyme disease, another friend is on LDN for cancer and doing well.

 

Liz - Scotland: Multiple Sclerosis (MS) (LDN; low dose naltrexone)

Liz considers she has MS since childhood, but didn’t get the formal diagnosis until she was 52, after several relapses and remitting remissions. She has the secondary progressive form of MS. About 8 years ago she started LDN, slowly at first because she also has restless leg syndrome. She quickly regained control of her bladder, which eliminated her recurring bladder infections, the leg spasms and pain diminished. Her max dose is 3.5, over which some spasticity returns. She remarks her partner takes LDN for arthritis, and she notes LDN also improves mood. She states her quality of life has improved from a 4 to about 8. In order to obtain LDN initially, she used Dickson’s Chemist in Glasgow, but when her doctor saw how much good it was doing, she now prescribes it.

 

LDN Webinar Presentation 18 May 2022: Dr Masoud Rashidi - LDN, Dosing, Fillers and Compounded Options. LDN, ULDN and Pain/Opioid Issues

Sponsored by Innovative Compounding Pharmacy https://icpfolsom.com/

 

LDN Webinar Presentation 18 May 2022: Dr Sato-Re - How and why I prescribe LDN in my integrative and general practice

Sponsored by Innovative Compounding Pharmacy https://icpfolsom.com/