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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.