LDN Video Interviews and Presentations

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. 

Dr Steve Zielinski is here today. Can you tell us who are you? What made you decide you wanted to be a pharmacist? 

I wanted to be a pharmacist because my dad was a pharmacist, and I liked it when he'd take me to work when I was a kid. I got to see him work and how he helped people. People really appreciated it. I wanted to do the same thing. 

How did you get into compounding? 

When I was in pharmacy school we were learning how to make stuff in the lab, and I was interested in making stuff. I like to cook a little bit, and compounding was just like cooking to me. That is what got me into compounding. 

Could you tell us what forms you make of LDN? 

We buy it as a bulk powder and we can make it into anything essentially. The forms of LDN we typically make are capsules, which are pretty standard. We also do a troche and we do a liquid, like an oral solution. Now we're working on transmucosal films. Those are films that you can put on the inside of your gum and it gets absorbed through the cheek. Some people complain about the troche taking a long time to dissolve and having to sit under their tongue for a long period of time. One of the things that we've started to learn to make are films that go on the inside of your gum or on the inside of your lip, almost like chew or something similar. It then gets absorbed through the skin. 

Did you learn about LDN in pharmacy school? 

I learned about naltrexone in pharmacy school. I heard it was great at 50 milligrams for treating alcohol and drug dependencies. I never learned about it at the doses that I'm using it for or the conditions that we're seeing it be beneficial for in pharmacy school. 

So how did you hear about LDN? 

Being a compounding pharmacy people would ask me, "Hey do you make low dose naltrexone?" That’s how I heard about it a lot of times. I often hear about things from other people that are wanting to learn more about it. Then it makes me learn more about it; or I get stuck in a position where I need to learn more about it because I don't know much about it, to be honest. I definitely don't claim to know everything about pharmacy, or medicine, or drugs, but when I get a question and I want to find out the answer I go and look it up. That's what I did. That's how I got started with low dose naltrexone. 

How long ago was that? 

I want to say close to five years ago. People were coming in looking for it for different conditions, and specifically pain, and I suggested this because it is low dose, not habit forming. I thought I'd give it a shot for somebody. We did and it worked. 

How many patients do you think you have on low dose naltrexone right now? 

Probably about 30 or so patients on it. 

How many doctors are sending scripts to you? 

About 10 or 11 right now. 

If you have 10 or 11 then they haven't got many patients each on LDN. What would you say is the stumbling block for them not to prescribe it more widely? 

I don't think they're aware of all the different things it can be used for. I think that's the biggest issue. I think the biggest stumbling blocks are having a good understanding of it for what they could be using it for, and then I think another stumbling block is the dosing of the medication. There's not a package insert that comes with this like there is for every other medication. You can't look this little drug up in the Physician Desk Reference and see how you prescribe low dose naltrexone. 

That's not there, but you know if you look up naltrexone, you're going to see a 50 milligrams dose and how to use it, but you're not going to see the different doses that could be used for in a different dosage forms. That's available from a compounding pharmacy. I think that's one of the hindrances that we see with this medication being prescribed. 

Did you know the LDN Research Trusts have three guides on our website. 

Those are great references that I'd love to make available to the prescribers that I work with. 

It's on the LDN Research Trust.org website under resources called LDN Guides that might be a benefit to you and your doctors. Many pharmacists that have been doing LDN for many years will have a seminar in their pharmacy and have an evening where they invite doctors to come. You give them a presentation and explain it to them.
Can you explain what conditions LDN could be used for treatment? Pick a couple and give some case studies. Tell them that you are available to answer their questions. I'm sure there are thousands of people in your area who have either chronic pain, mental health issues, autoimmune disease or cancer. The number of people you know that could be using LDN is endless. Anybody who's in your area who would like to help you expand the client database to get more doctors prescribing LDN in your area would be amazing. It would be great to see yourself grow. 

I think we end up using it as an option a lot of times when other things fail. I think that's how we get people started on it for the most part. The most interesting one has been with hair loss post COVID. I think it has been really interesting to see when people have been having their hair falling out. Whether it's from having COVID or exposed to COVID or don’t know what it is, I don't know the diagnosis but we try treating hair loss and nothing's working and then we try low dose naltrexone and it works. It has been a new one for me. 

Having COVID happen and the pandemic and everything has been a springboard for low dose naltrexone because LDN works so really well for long COVID. There are two chapters in the LDN Book Three that address long COVID, and you can hear Professor Angus Dalgleish saying that he's a cancer oncologist. He also is a virologist. He treats people with long COVID and he says that it should be a first line of treatment because patients do so well on LDN. He said some people have said it's placebo and that there's nothing to this treatment. He says that once they stop LDN all their symptoms come back. When they restart the symptoms go away. You then know it can't be placebo. It should be a first line of treatment. When people have COVID, you know they are worried about getting long COVID. They should take LDN. It really a game changer for them. There are people who have had chronic fatigue for years. Years ago they were dismissed as being imaginary or told it's depression. There is nothing wrong with you. Deal with it. Now COVID has come along and some have similar symptoms and all these people are saying who've got long COVID. Fatigue is terrible. It's absolutely awful and that's been around for a long time. People who had it were not believed. I think it is going to raise awareness that will help people with chronic fatigue syndrome. People recognize it as a condition and not just an imaginary condition. 

You said with chronic pain, are people using it to wean off of opioids? Are they using it once they're off the opioids? What I'm trying to say is, are you using micro-dosing LDN alongside of opioids to get patients off the opioids? 

Yes and it's really interesting to see because there's a lot of hesitation and nervousness by the prescribers to do that, because but it's such a low dose that you can wean somebody off of opioids and morphine with it. We've been successful with it and it's been pretty neat, because when you're dealing with long-term chronic pain, to use something that doesn't cause you the side effects, constipation and things like that, on top of the opioid addiction. It's pretty nice to have that in your in your toolbox as not every doctor has that, because they have that tool in their toolbox they could use, but they hesitate because of not understanding how low dose naltrexone is going to work in combination with a stronger pain medication like an opioid. It always amazes me that there are people who have had chronic pain for 20 years and they have taken the highest dose of Oxycodone, they then have another fentanyl patch put on and they end up with this cocktail of pain medication. They have to take other medications to combat the side effects that these medications have caused and their pain is still a nine to a ten every day. This time they can't come off those pain medications. They're addicted to them, although they're not working and my understanding being non-medical that these high doses of pain medications are very bad for your organs. They are damaging themselves at the same time as it's not working. 

To actually take a micro dose alongside of those medications where you don't have to reduce the dose initially everything stays the same. You're not going to go through withdrawal. You're not going to feel your security blanket has been taken away from you, but it does make the opioids you're on more effective. That means you can titrate the opioids down while titrating up the naltrexone and people come off it and I'm happy when people say for 20 years they've suffered. They've come off the opioids. They didn't go through withdrawal. People say that they feel no pain anymore but some will say I still have pain but it's a three or a four and I know it's there but it doesn't stop me from carrying on to live a normal life. I can still achieve what I want to achieve. The pain isn't stopping me and I think from the LDN point of view that is just totally mind-blowing because you think of these opioids as being like a sledgehammer. The LDN being a feather, you think how can it properly be effective but you've seen it too. I have seen it and I think it's really very interesting because people don't just come off of their opiates when they go on LDN. 

That's where they start. They start coming off of their pain medications with the hardest ones first but then the longer and longer they stay on the low dose naltrexone more things can start falling off after that as well. It's really interesting to see the same doctors that are hesitant to start the low dose naltrexone for people on chronic pain medications to be the ones that would be the one recommending that and not the next pain medication. I had a patient that was on a morphine equivalent and maybe an oxycodone or Oxycontin or something like that at the same time for chronic pain and it wasn't going away and he was on there for about two years and then something about nerve pain was mentioned and neuropathy. I had recommended using low dose naltrexone and he used it and then the doctor started titrating the doses of these medications away and it wasn't just those two it was also other things. There was Topamax for pain that wasn't needed anymore. You're not just relieving a couple of medications, it's a lot of medications. It starts with a couple and we titrated it up slowly at the same time of weaning them off of one of the pain medications. Then once he was comfortable without one of the pain medications then he learned that he could also stop a second pain medication. This was a period of maybe six to eight months and over six to eight months that he was opioid free. No morphine, no opiates. Strictly just using low dose naltrexone with other muscle relaxants as well. Then a year later or two years after that he was even able to stop some of those. It's not just stopping opiates it's stopping other medications as well. 

I know some people who had fibromyalgia or who have fibromyalgia who were taking like 14 different medications a day and some of them have got down to just taking two or three including LDN. That has to be better for your system. The less medication you're putting in your body the better. Obviously medications are important when your body isn't working correctly and you are in a lot of pain. Sometimes if the necessary evil is but I think it's a good starting point to see what alternative dosage forms and treatments can do. I think that's what I really like about it is because I kind of play and not play, but I kind of work in a pharmacy where I'm doing both nutrient depletion compounding and traditional medicine. It's not one side or the other, but how do you use them both together, and I think when you can use something that can get an effect that the doctor wasn't aware about, or wasn't completely knowledgeable about, and it works, it starts getting people interested in their own health and seeing what else is out there. I think that's the best thing about low dose naltrexone. It's one of those things that does just that because it's okay what is possible because my pain was forever and now it's gone. I had to use these opiates forever and now I don't. Once you do this and they get that X they get exposed to that then they start taking their health in their own hands. 

The favorite part of this drug is people start taking control of their own health. They can bring questions and stuff, but ultimately they take control of their health back in their own hands. Doctors if they were listening to you and work out, I think that's something we do well is we only have about 30 to 35 people. I think low dose naltrexone, but I think that's one thing we do is we run into all those stumbling blocks, those challenges. We can make the recommendation that they should do it but it's something that their doctor ultimately has to make the decision on, and so we try to equip them, to empower them to have the right information in their hands. This is where it's worked before. How can I start trying this or how can I take this step? I think that's what we do pretty well. Not with just low dose naltrexone, but all medications. If a patient has a high blood pressure and they're not sure which medication is causing it, maybe they have two or three different blood pressure medications, pharmacists are in a great position to be the advocate of saying talk to your doctor about this blood pressure medication and see all the time these medications have a risk and reward. If a medication has more risk or more downside than the actual benefit but low dose naltrexone there is a lot of good literature out there. Whether it's a case study or a larger study on multiple people or case reports or controlled trials they're out there. The data's out there. There's plenty of evidence to support using it to where it's still evidence-based medicine that we're practicing. 
 

Linda Elsegood and Seun Moses: symptoms.wiki curator talk about low dose naltrexone (LDN; low dose naltrexone)

Alison - US: CFS/ME (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

LDN Webinar 18 May 2022 (LDN; low dose naltrexone)

LDN Questions Answered Live by

Pharmacist Dr Masoud Rashidi - LDN Specialist
Dr Sato-Re
Dr Mathewson

Sponsored by Innovative Compounding Pharmacy icpfolsom.com

Yusuf (JP) Saleeby, MD - LDN to help Long Covid patients; March 2022 (LDN, low dose naltrexone)

A high percentage of Covid patients continue to suffer debilitating symptoms well after the initial infection. This is because of the increased inflammation and reduced autoimmunity. Low Dose Naltrexone (LDN) bolsters and regulates our systems quite effectively. Dr. Saleeby observes many conventional doctors are finally recognizing LDN as a primary treatment for Covid long-haulers, as well as other autoimmune conditions. He cited the Ldnresearchtrust.org site as an invaluable source of information on LDN. He looks forward to Linda Elsegood’s 3rd LDN  Book coming out soon.

Review by Ken Bruce

How LDN is helping Long Covid patients - Dr Yusuf (JP) Saleeby (Trascript)

Linda Elsegood: Today we're joined by Dr Yusuf Saleeby, also known as JP. Thank you for joining us today.

Dr. Saleeby: Hey Linda, it's always a pleasure.

Linda Elsegood: Now, you're going to talk to us today about Covid and Covid long-haulers, so I'll hand it over to you. Thank you.

Dr. Saleeby: Sure. So you know, two years into the pandemic we're seeing still a few cases of acute Covid infections but as of today, and this is the first of March 2022, we are not seeing too many acute cases. But what we are seeing is quite a number of long haulers or long Covid and also post Covid syndrome. It's also referred to as the syndrome of post-acute Covid infection, and the sequelae involved. And we're seeing also some issues with folks who have been vaccinated, some post-vaccine injury, but essentially what's happening is we're seeing a good bit of folks who had can't shake the initial Covid infections. And we've seen cases where a person has been infected two or even three times with different variants.

But the focus in general right now, moving forward, is a large number of folks coming in with the post-Covid infection, and some still suffering from long-haulers. There's a protocol we follow. The FLCCC has a very relevant protocol that's fairly frequently updated based on this new science coming in, and peer-reviewed articles. And that's kind of what we adhere to, with a few modifications. We're a little bit more aggressive with some of the dietary supplements that we prescribe. But essentially, low-dose naltrexone, which was offered as a second or third line agent, has now, in the recent month, been moved up to a primary intervention. So along with things like ivermectin and prednisone and omega-3 fatty acids, which is essentially what's derived from fish oil, and high doses of Vitamin D. The other agent is naltrexone, as in low-dose naltrexone. They're asking folks to begin at one milligram daily and increase to four and a half milligrams in a very short period of time. They are also stating that it's best to have people on this for two to three months to see full effect. So as with some of the other interventions, like they're recommending ivermectin, weight dose dosing, which is 0.2 milligrams per kilogram body weight, until symptoms resolve. Not necessarily for 14 days or one month, but until symptoms resolve.

And the same thing can be said for the use of low-dose naltrexone in my patient base. A lot of my patients actually are on it for a number of reasons, whether they're suffering from Lyme disease or autoimmune disease. So my patients actually have a benefit of being on LDN at the therapeutic dose, whether it's three and a half to four and a half milligrams a day. So they have the benefit of that. And then if they do get Covid, their symptoms are usually quite less. We've not really had but one or two hospitalizations. The stays are usually very short, maybe two to four days, just for high flow oxygen, and then they're discharged home. To my knowledge we've only had one or two patients ventilated during this whole pandemic. So adherence to early treatment, and the implementation of naltrexone as part of that regimen, has been very successful for us. Now our attention is focusing on folks that have long haulers still - brain fog, fatigue, loss of smell and taste, are the predominant ones; hair loss - we're seeing that as part of the syndrome. But it's mostly the fatigue. And so naltrexone is becoming a big part of our protocol for them,

Linda Elsegood: And how open-minded are other physicians to prescribing LDN.

Dr. Saleeby: As you know, it's like a certain segment of the physician population, at least in the United States, I don't know how it is worldwide, but there seems to be a better embracing of the use of low-dose naltrexone than other interventions like ivermectin and hydroxychloroquine, because those two other agents have been politicized a bit, whereas naltrexone has not. But there are certainly other interventions that are embraced by folks that are open-minded to integrative, more holistic, and what we call functional medicine, than the standard mainstream medical doctors, although the FLCCC in truth is actually established by conventional doctors who are open to using early treatment with ivermectin and hydroxychloroquine, Alinia/nitrazoxanide, along with their traditional medications like prednisone, Singulair, some antihistamines Pepcid, things like that that are used in the protocol. But what they've also introduced are things like curcumin, Nigella sativa - which is the extract of black cumin seed oil, a very potent anti-inflammatory; higher doses of Vitamin C, melatonin, probiotics, and H2 and H1 receptor blockers. H1 would be your traditional antihistamines like Benadryl or Zyrtec or Claritin, and your H2 would be things like Pepcid/famotidine.

Some of those other agents - montelukast, which is Singulair, is also prescribed for those with MCAS - that's Mast Cell Activation Syndrome, which is part of the long haulers syndrome. It's where mast cells become destabilized and release a lot of histamine, so you have things like hives and rashes that appear, and some other complications. That's why the antihistamines and the leukotriene inhibitor Singular are used. There are some that will use anti-androgen therapies. There are some studies out of Brazil that showed that that was effective. And statins. I'm not a big fan of either of those two last agents, so I don't prescribe them in protocols for my patients. There's another SSRI (serotonin reuptake inhibitor) called fluvoxamine or brand name Luvox, which has been used, but it's not very well tolerated, so that's one that we have to be super careful with, because a lot of folks don't tolerate it. They have a lot of nausea or psychiatric kind of manifestations.

But LDN obviously is a great agent to use, because number one, it is very well tolerated; number two, it's very inexpensive. And it seems to be working very well. I mean, it was moved up from second and third tier to primary tier or primary agent to use by the FLCCC. And they're heavily research oriented. In other words, they don't make a move in that direction unless it's substantiated by large observational encounters with patients, or peer-reviewed journals.

Linda Elsegood: So, the million dollar question; put you on the hot spot here. What do you think that has done for LDN? Has it leapfrogged it forward far quicker than it would have done previously? And the second part of the question is, what do you think of everything that's been happening with using LDN for the symptoms of fatigue? What's it going to do to people with chronic fatigue syndrome?

Dr. Saleeby: Right. So yeah, I certainly think that the pandemic has elevated LDN to the top of mind for a lot of clinicians, both those that have been using it and were familiar with it to some degree in the realms of integrative and functional medicine, but also to the mainstream doctors who were unaware of LDN previous to the pandemic. Now it's front and center. I mean, it's one of four or five interventions that are considered top tier to use for people recovering from long haulers or post-Covid syndrome. So I think it did leapfrog it, I mean, in the minds of many doctors. To be put top of mind, that's a fantastic thing. That's kind of a good thing that came out of this horrible pandemic, if you will.

And the second question you had was, what about its effects on chronic fatigue. Well I've been using that in chronic fatigue and autoimmune patients and people with MSIDS (Multiple Systemic Infectious Disease Syndrome) or CIRS (Chronic Inflammatory Response Syndrome). Those are all different acronyms for almost the same essential issue. It's a syndrome that involves the immune system and inflammation, and we know that LDN and naltrexone in research is an anti-inflammatory from several different mechanisms. It helps suppress inflammation, and the post-Covid syndrome, and certainly the long haulers, is a problem mostly with inflammation. The virus is long gone. It's already out of our system. Usually 9 to 14 days after you first get infected, the virus has done its bad thing, and it's sort of kind of gone away, and what's left is the sequelae of that, which is lots of inflammation. And that's what actually hurts people. It destroys their lungs and other organs: liver, kidneys, things like that; and affects brain and cognitive issues, and things like that. So one of the interventions used is high doses of curcumin and black cumin seed oil. Those are potent anti-inflammatories. Even those that decide to use statins, they're using it for the anti-inflammatory nature of the statin, like atorvastatin. But then LDN comes in, which has a very safe and effective mechanism of lowering inflammation. I think that's why it's important.

Linda Elsegood: Well let's just hope that, as you say a good thing has come out of this. If we can get more doctors prescribing LDN and finding the benefits that patients have, hopefully they will prescribe it for more conditions. Mental health, autoimmune, cancer, pain, the list goes on. But I think it does make a big difference, the first time a doctor actually can see that LDN has done amazing things for a patient. It gives them the encouragement and the confidence to prescribe it for further patients.

Dr. Saleeby: Right, I think I definitely. And Linda, your website does a phenomenal job in helping me put together a PowerPoint presentation for your organization as well as for upcoming symposium I have. I've gone to your website, which is a great resource, and it lists all the different conditions that LDN is being used for, or would be useful. There’s this long list of conditions, categorized. Pulmonary, neuropsychiatric, cardiovascular. You've done a great job in enumerating all these conditions, and I think it's just a matter of time now for doctors to start embracing that, looking at the literature, looking at the peer-reviewed literature that backs up the use of this agent, a very unusual drug. It's one of my probably top five of my safe and effective drugs that I prescribe, and that's what I would grab. I tell my patients if I had to grab an agent to take with me on a deserted island, one of the top three would be naltrexone for the LDN. It's a powerful drug with a lot of uses, and it's backed up by research. That's the important thing.

Linda Elsegood: Talking about the website, we do update it monthly, so any doctor that tells us of a condition that they treated a patient for with LDN and had good results that's not on our list, we add it. We also add the latest clinical trials and peer-reviewed papers, and LDN in the news, things that have been happening. So we try and make it a one-stop, where a doctor, a researcher, a pharmacist who's looking to do a presentation, just like you were saying, that they can find the information quickly and easily. It's a never-ending job.

Dr. Saleeby: I know it is it's a great thing you offer, and I do send patients to that website in particular when we have a discussion in my office about LDN. I have some material I hand out to them, but I also direct them to the LDN Research Trust website so they can glean a lot of information. It's great resource for them.

And I understand there's a new book coming out, Linda?

Linda Elsegood: Yes, we've got the third LDN Book, which should be coming out in the fall. And we're covering different conditions. Many people have asked if it is the first book updated the third time. No, it's a series of books. So we've got Volume One and Two, now we've got Volume Three. And you put me on the spot to try and think what's in Volume Three. But it's really exciting, and you've written a chapter as well. So I think watch this space, and it will be available in a few months.

Dr. Saleeby: I mean reading Volume One and Volume Two I thought well, maybe that would be just an update, like a second edition. But it wasn't. Some novel things were discussed in Volume Two, and I'm assuming that like you say, Volume Three will be more novel stuff.

Linda Elsegood: The whole idea is to have every volume cover conditions that haven't been covered in the previous books, where we have the latest research, and we will have a section so the latest papers will be referenced at the back. I mean, we have every book, hundreds of references, and of course as time goes on, every year there are more papers coming out, which is fantastic.

The LDN Research Trust has been going over 18 years now, and initially, published papers were slow coming through. But every month there is something somewhere in the world. Somebody's done something, had something published. So it is gathering momentum

Dr. Saleeby: And Linda, I think really, with the last two years of us being in a pandemic, where a lot of focus has been on Covid 19 and what we can do for it with, let's say, off-label use of certain medications, and LDN. That's going to even push more research money towards researching LDN. I'm sure. Now that it's on the protocol,and it's like in the number one section of early interventions for long haulers, I think you'll see probably more and more papers. Actually, it should be exponential, in the number of researchers wanting to take this on and do more research, for sure.

Linda Elsegood: Fingers crossed!

Dr. Saleeby: So Linda, I've got a very interesting case that I saw in my office a few months ago, and this is actually a post-Covid vaccine injury type case. This lady, unbeknownst to her, had an underlying tick-borne infection. She actually had Lyme disease that was activated by the first dose of a Covid vaccine. I'm not going to mention which one it was, but it was a first in a series of two that she received. And within 48 hours of receiving the first dose, and then for the subsequent weekend, to two weeks thereafter, she suffered some neurological conditions that put her in a wheelchair. So this is a woman, and she was in her late 40s, and she was very ambulatory; didn't really claim any health issues. Next thing you know, within a very short period after her first vaccination, she was wheelchair-bound, couldn't walk, and had a very staggering kind of staccato that almost looked like a Parkinsonian kind of gate. It took her literally three minutes to get up out of the wheelchair and walk a few steps across the room to the doorway of my office. Now, we put her on a pretty heavy-duty protocol involving a few off-labeled drugs, but also I rapidly escalated her dose - she was never on LDN - but I placed her on low-dose naltrexone and escalated her dose pretty quickly, because I knew time is of the essence here, and I didn't want her neurological problem to progress. And during that time, it was when we discovered that she had Lyme disease as an underlying etiology, and it was just exacerbated by probably the spike proteins in the MRNA vaccine. We were able to get her rapidly up to 4.5 milligrams, which she tolerated very well. And the second time I saw her, she had transitioned from a wheelchair to a walker. On the third visit, which was a month later, she was using a cane. Now she was able to ambulate without the use of any help like a cane or even family members, but again it was extremely slow with her ambulation, and it looked kind of almost Parkinsonian in nature. Kind of like this leaning forward, kind of unsure, took her a long time to actually turn. But once she initiated the walk, she could carry on her day, and it was a little bit slow. But now I have not seen her back in about a month or two. She should have an appointment with me again soon, but I thought that was a pretty interesting case, where I think I'm pretty sure that the naltrexone had a big part to play.

Linda Elsegood: Well, thank you very much for having shared your experience with us today.

Dr. Saleeby:  Well Linda, it's always a pleasure. Have me back anytime. It's always good seeing you.

Linda Elsegood: Thank you. 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.

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.

Zoe - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Zoe from England who has multiple sclerosis. Welcome, Zoe.

Zoe: Hello.

Linda Elsegood: Could you tell me when you first started to notice symptoms, and how old were you then?

Zoe: In 1993 I started getting numbness in my toes, but I wasn't diagnosed until 2001. I was 51 at that time, I was a very active person. When I first started getting symptoms, I used to compete successfully in orienteering triathlons. My children were still at secondary school and I was working part-time. 

Linda Elsegood: At the time you were diagnosed, what were your symptoms 

Zoe: I had optic neuritis and, or a long time I'd had problems with foot drop, then I was getting problems in my leg. I hadn't connected the two, but of course, when I saw a new neurologist, he realized and so I got the diagnosis. 

Linda Elsegood: And how's the impact on your life being diagnosed with MS?

Zoe: Well, obviously I had to stop running my sporting activities. It just went downhill. I couldn't read a map, and I couldn't run, so orienteering wasn't possible, and it was really devastating to be told you have an incurable disease, which is only going to get progressively worse. You tend to go into deep despair, but I did have a very supportive family, and they just gave me enough space to come to terms with it. Which I suppose I did in my own way. I could still run a bit then, but it just became gradually worse over the years. I didn't have any very serious symptoms. The optic neuritis was just gradually getting worse. 

Linda Elsegood: And how did you hear about LDN? 

Zoe: Well, I read that in youth pathways, and I also joined the MS group and some people in that group were taking it. I think that was around about 2004 when I first heard about it. 

Linda Elsegood: When did you first start taking it again? 

Zoe: I didn't start taking it until 2010. I had tried before then; I had no luck getting LDN when I first wanted it, which was 2005. I got a load of information from new pathways. I sent it to my neurologist and to my GP. And when I discussed it with him, he just dismissed it. He said, Oh, that's just a placebo. You might just as well take all paper paste. So I said to him, well, what do you recommend? What can you do for me? He said, there's nothing I can do for you. He didn't have any alternative. I've never seen him since, so I asked my GP if she would prescribe it, but she said, Oh no, I can't go against what the neurologist said. So that was it really. I believe I could have gotten a prescription from the States or something, but I don't know. I just didn't go down that road. I tried lots of other remedies, with diets and various things. I tried antibiotics. They all helped to some extent, and I think that was the placebo effect.

Eventually my MS nurse said, what don't you see this neurologist, another man. And he said there was no harm in trying the LDN though he didn't encourage it. And by luck, my GP was having a baby and her replacement said you can try this, good idea. So I eventually started it in December last year. 

Linda Elsegood:  Did you notice any initial side effects? 

Zoe: Yes, I did. I got a headache which lasted about a week. I felt very dizzy at first. The first day I felt dizzy and I didn't dare drive a car. The headache lasted about a week and then went off, but I also felt very sleepy. When I increased the dose, I could get the unpleasant dreams, which is sort of usual side effects, I believe. 

Linda Elsegood: And how long did it take before you found that LDN was a benefit?

Zoe: It started being beneficial more or less about the first three weeks, I suppose. 

Linda Elsegood:  What benefits have you noticed being on LDN? 

Zoe: My energy increased. I was up to do more. I don't get so tired, and what I really noticed after a couple of months, was that my concentration had really improved. I could think about things without getting muddled like I used to. I did a tax calculation, which I'd been putting off for months, and I found I could go out in the evenings and do things like that. I kept doing things I hadn't done before, not all at once. I mean, you know, and another day I washed the car, and I kept thinking, I haven't done that for a long time.

Linda Elsegood:  If you were to score your quality of life on a rating of one to 10, 10 being the highest before you started LDN, what would it have been? 

Zoe: Oh, four. I should think. 

Linda Elsegood: What would you say to other people who are contemplating trying LDN

Zoe: I think they should go for it. Start as soon as you can, if you can get. If you can get it you might need to persevere to get through the initial discomfort. I would say the starting dose seems to be quite critical. I got it in a liquid form, and it was easy to adjust. So although I started at three milligrams, I reduced it quite soon to two milligrams and I found that I could cope with that better. So that's probably why some of those headaches and tiredness went. It's quite an easy thing to do, and you just need to persevere. 

Linda Elsegood: Well, thank you very much for sharing the story with us. 

Any questions or comments you may have, please Contact Us.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.
Linda Elsegood: 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. 
 

Wendy - South Africa: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

When Wendy first started her Low Dose Naltrexone (LDN) journey, initial side effects included vivid dreaming and on some days, very tired.

Wendy rated her quality of life a four to five out of ten before Low Dose Naltrexone (LDN) , and now a lot higher due to her feeling as if she can do anything. 

Wendy recommends people to go for LDN, saying that you will feel better from it, so is definitely worth some research to try it,

Please watch the video to view the full interview. Thank You.

Any questions or comments you may have, please contact us.

Vivien - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Vivien from England shares her Chronic Fatigue Syndrome (CFS/ME) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

Vivien had been living with Multiple Sclerosis (MS) since 1992 but in 2009 she was rushed into hospital and put onto a ventilator following issues with breathing, which led to her second diagnosis of Chronic Fatigue Syndrome (CFS/ME).

After researching for alternative treatments herself, Vivien was able to get a prescription of Low Dose Naltrexone (LDN) from a private clinic and hasn’t looked back since. She no longer needs a walking stick and feels full of energy.

She recommends LDN to all those who are curious, praising the many benefits it has to offer.

This is a summary of Vivien’s interview. Please listen to the rest of Vivien’s story by clicking on the video.