LDN Video Interviews and Presentations

 

Paul from the US talk about LDN, Chronic Pain, TMJ, Cancer and Sleep Issues

Paul Pain.mp4

Lindda: 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'd like to welcome our guest Paul from the United States who takes LDN for sleep issues and pain.  Thank you for joining us today, Paul.  

Paul: Glad to be here. 

Linda: Can you tell us how long ago it was when you started having issues?   

Paul: I can say that I've had TMJ pain since the 1990s and neck pain probably since the early 2000s.  I spent a lot of time at doctor's visits investigating how to resolve those and never really found a solution to reduce the pain. The best I could do was massage, I think, which helped a little bit but only helped for a few hours at most.  It really disturbed my sleep.  I have a very hard time sleeping.  I fall asleep and within an hour I wake up because of neck pain, and I have to turn.  I probably bought a thousand dollars worth of pillows trying to resolve the neck pain and sleep, but it's very disturbing. I have an Ora ring, which measures my sleep disturbances, and it's basically a bunch of lines indicating movements non-stop throughout the night.  

Typically I'd wake up four or five times a night and have to get up because I was in so much pain.  I don't know why, but after the last 10 years it got to the point where my legs would start aching while I was sleeping.  It doesn't bother me during the day, but the longer I slept, the more my legs ached.  I had to get up, so I was typically getting up four or five times a night.  I could blame prostate issues, but it really wasn't,  it really was sleep issues and neck pain and leg pain that would cause me to lose sleep, and I had very, very bad sleep.  I investigated having surgery in my jaw and surgery in my neck.  Jaw surgery is not covered by insurance and it was like fifty thousand dollars out of pocket, and with a only a 30% chance that would be successful.  Neck surgery was probably a little bit more. It was paid by insurance, but it had a lot of risk to it as well.  

So I've never pursued that, and last year about this time I started investigating stem cells as a way to do it, and the cost of that was between ten and twenty thousand dollars, and you go to a foreign country and you don't know really know what you're getting, and nobody had any good data to say that it was going to be successful in treating my pain and whatnot. Then I stumbled across LDN, and…

Linda: Hang on a minute before you get to LDN, Paul.

Paul: Okay sure.

Linda: What medication were you given for the pain?  So I'm not talking about your massage, I'm talking about actual painkillers.  

Paul: I've been taking painkillers to sleep now for two decades. Heavy doses.  I was taking Valium for about 15 years of that, until I moved away from where I was living and I lost that doctor that would give it to me.   I was also taking heavy doses of NSAIDs, drugs like Tylenol and the typical.  I take two painkillers before bed, and then I take two about three in the morning just to see if I could get through a night, and usually they didn't really kill the pain.   I tried to avoid them during the day because I know the liver toxicity of some of these drugs, so I was basically in a regimen of painkillers.  I took one called meloxicam.  It's supposed to work 24; and then I take others on top of that one. I was taking multiple different types of painkillers constantly. 

Linda: If you had to say at that point your pain level was on with 10 being the highest, what would they have been roughly on a daily basis?   

Paul: 9.5.  

Linda: Really even with all those?  

Paul: I would cry almost some days, there was so much pain. 

Linda: I mean, that must have impacted your life. Were you able to function?  

Paul: Yeah.  I function, but I was often kind of grumpy, my wife at the time thought, most of the day, just not happy with that, but yeah, it's just  angry and grumpy most of the days.  Yeah, just not a happy person at all.  

Linda: Apart from seeing your doctor did you see a pain specialist at any point?  It sounds as though you've spent a lot of money trying to find answers.  

Paul: No, I do a lot of research.  I mean, my background is that I  spent 40 years doing research and reading research papers and stuff, and  opioids seem to be about the only thing doctors could give you, and I didn't want to do that.  I have a brother that's kind of addicted to opioids.  He had back problems, and you just can't get off the opioids, and I don't want to go that route.  I really am trying to be stoic about it and just bear it. But you know, some days I just, you know, it's been very hopeless. But basically it was a lot of investigating. I don't have much faith in the medical profession, to be honest with you. I just don't see them as being responsive to pain issues at all.  It's like unless they can do surgery, or you know, that you go to a specific specialist, and they recommend what they do as a solution. Like, I went to see this jaw specialist.  Of course the only solution was the surgery in my jaw.   I went to a dentist about that and he says the only solution is to do braces for you. Everybody's got their solution a little but no one guarantees the solution is going to work.  

Like I said, I watched my brother, who has had three back surgeries. Everyone promising that they're going to cure his back problem.  I'm very skeptical about what the traditional doctors can do for you.  My research really didn't give me a high degree of confidence that anybody really had a solution the pain problem, because there's multiple issues between my legs, my neck, my jaw.  

Linda: Was it your own doctor that prescribed LDN, or did you have to hunt for an LDN doctor?  

Paul: No, actually. There is another part of my story.  About 10 years ago I was diagnosed with prostate cancer, and I did some research then and one of the things I found was that people that take Metformin have much more extended lives, and across they seemed to have,  I don't know what the word is, progression, of the prostate cancer.  I started taking metformin six, seven years ago through a company called Ageless Rx I found in the US that would prescribe it for me. And  probably in the fall of last year, I saw they started offering LDN, and I don't remember what that pitch was. I think it was for pain, but so I started investigating what LDN was. I started reading  research papers on PubMed about LDN, and so that's where the idea initially came from is Ageless Rx. It is just a company in the US. Anybody in the US can get LDN from them, but basically you don't need to go to your doctor, and you know I've had experience with doctors that, you know, they scold me if I tell them I'm on Metformin because I'm not diabetic,, you know and you know that they're actually getting mad at you if you're not following the "standard of care." In the US they have this thing called Standard of Care, and that's all you know.  That's what the doctors follow, and you’re not going to go in anything that's outside of standard care. And so I've not really ever approached a doctor, because I've had experiences with three or four of them that have not been happy that you might tell them what I'm doing with the Metformin.  Ageless Rx is where I found this, and I started reading about it and how it worked.  The mechanisms of action and how it blocks the opioid receptors, and then you know, during the day they bounce back and produce more endorphins and whatnot.  So  it looked like it might be helpful, and certainly maybe help with sleep, maybe help with pain. And then even maybe there's some indications that it might help with cancer.  So I thought it looked like a no-lose solution that I might try, and that it wasn't going to cost me ten thousand dollars like going to Mexico for stem cells, and it wasn't going to have the risk of  jaw surgeries where I'd had my jaw wired shut for eight months or whatever. And I think it was December, I started taking it, late December.

Linda: So, when you first started LDN, did you have any side effects?  Did it make your sleep worse, or did you notice you slept better?  

Paul: So, the very first thing when I started, they gave you 1.5 mg pills, and they said take one and a half for ten days, and then move up ten days to three, and then next 10 days to four and a half.  That was their prescription. The very first night was strange, because I slept all the way to 5 am, which was shocking.  Actually, I felt a little bit of euphoria when I woke up.  It's the only time I felt that, was the first night.

The next morning, I had, maybe this is too TMI, but I had loose bowels that next morning, that was it as far as the side effects go.  I did, during the first months, start to have dreams, but if you  look at my sleep, you know things on my aura app, you see that I was getting 5 to 15 minutes of deep sleep at night, and less than 20 minutes of REM sleep at night. So it wasn't surprising to me that I started having dreams.  People talk about having dreams, well this is the first time I had dreams in decades, really.  I started having dreams because my REM sleep immediately increased to well over an hour, and the deep sleep has progressively grown, and now I get close to two hours of deep sleep, and two hours of REM a night ,which is amazing  because I haven't had that in decades, But in the first 10 days I slept eight hours without getting up, and that was the first time probably since I was in my 30s that I've done that.  That was a long, long time ago, because I'm 70.  I've slept through the night three or four times in the last couple months.  I don't usually  get up more than once a night to go to the bathroom, but I don't wake up in the middle of the night with pain.  My movements as defined by the Aura ring, it  has these little dashes that show movement throughout the night, and it's gone from hundreds to maybe a dozen times I move through the night. I said my sleep has been remarkably improved, and I don't wake up with a sore neck or sore jaw, and my legs don't hurt at all during the night.  It's really been amazing to me, the changes taking this drug, and to me it's like I said, one side effect the first morning and I've had no side effects at all other than what people call dreaming.  A side effect, that would be it, but I'm not opposed to dreaming. It’s actually kind of interesting, because I'm remembering things from my past I hadn't thought about for years, and so it's actually kind of pleasant.  A lot of the dreams.

Linda: The pain: how long would you say you'd been on LDN before the pain receded?   

Paul: I'd say within 10 days it started to reduce, because I was able to start sleeping longer.  The last month and a half I haven't taken any painkillers.  That's amazing.  Which is the first time since 2000 that I haven't gone a day without taking painkillers.  That's a long time that I was taking them.  

Linda: What would your pain levels be today?  

Paul: Right now I'd say 2 or 3.  People tell me 2 or 3 doesn't stop you from achieving everything you want to achieve in a day.  My wife, we live in the mountains of Colorado, and my wife likes to go hiking, and after about a mile my neck used to hurt so much I couldn't go on.   I'd have to stop, and now we go on 5 to  10 mile hikes. I'm mountain biking now.  I'm doing it without pain. It’s really changed what I'm able to do outside. And just the day-to-day living, too. 

Linda: Have you been back and had any tests for your cancer?  

Paul: No, I haven't.  But  I'm gonna get some blood work maybe in July, and see the inflammation level.  Because of all this, I  do blood markers a couple times a year.  I had one beginning in January.  It didn't show any difference, but that was probably a week after I started.  A couple times a year I take a full panel blood work, and I actually order tests way beyond what doctors order.  I do a lot of inflammation biomarkers and things like that.  On a daily basis I  record a lot of my biometrics.  Blood pressure, heart rate variability.  I record my sleep every night, and I get a spreadsheet and stuff.  I'm kind of an engineer by background, so this is part of my retirement past time, just looking at data.  I look at a lot of data.  I'm gonna do that and and I'll see what happens, and I think second quarter, middle late June, I'll take another blood sample and see.   I'm hoping to keep my fingers crossed that my inflammation markers will go down because they have been going up.   I mean they've been pretty high.  I have a lot of inflammation in my body. 

Linda: Did you clean up your diet? Are you on a healthy diet? Do you take supplements as well?  

Paul: Probably, about four years ago, I started changing my diet.  We don't eat sweets, we don't eat bread, we don't eat rice, we don't eat pasta.  I have a very low carb diet I've had for the last four years.  You know, basically something called a Warburg effect. I don't know if you're familiar with that, but he's a German that figured that cancer loves sugar. That kind of eliminated sugar from my diet a while back.  Yeah I would say I eat a very healthy diet. A lot of a lot of vegetables.  I don't have processed food. We don't ever use pre-cooked pre-prepared food at all.  It is all whole foods if you will.

Linda: Well that is absolutely amazing.  We've come to the end. I wish you well, and it would be really good if next year you could come back and give us an update so we can see how those markers are.  

Paul: Yeah that would be interesting. I'm very curious about it because I feel so much better.  I think they'll be better, but until you get the measurements, you don't know.  I'm keeping my fingers crossed they are.   

Linda: Well thank you.  

Paul: I just want to share this, that I  go on these Facebook groups, and it's shocking to me, I guess it shouldn't be shocking, but probably so many people only post when they have problems or bad experience, but because I don't post too much about doing well. You don't bother to write because you feel good.  You don't even want to you go and look at that, but I just want to reach out to someone to say this thing.  This stuff really works, and as I said, I read a lot of the PubMed papers about LDN, and it convinced me that it really is.  So maybe it's a placebo, but I think it's a real effect, and you know as I said, my pain level is down, my sleep is better and I can enjoy things a lot better than I ever did. 

Linda: Any questions or comments you may have please email me Linda l-i-n-d-a at ldnrt.org I look forward to hearing from you.  Thank you for joining us today. We really appreciated your company.  Until next time stay safe and keep well.

 

 

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

 

 

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

 

 

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

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

Kara: Thank you for having me. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kara: Me too. Same. 

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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.

 

LDN Webinar Presentation 18 May 2022: Dr Mathewson - LDN as supportive care for Oncology and Autoimmune patients: Case Reviews

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/

 

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.

 

Rumina shares her mother's cancer journey (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Rumina's mother developed stage 4 diffused B cell lymphoma cancer in 2017. She had radiation and chemo, but it spread to become secondary brain lymphoma which her doctors said would be fatal within 6 months. Rumina learned of Low Dose Naltrexone (LDN)  from a man who survived his cancer with LDN. Her mom is stable 4 years later with no other cancer treatments, just LDN, multivitamins, and turmeric. Listen to this remarkable survival story.

Review by Ken Bruce