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.

 

 

Doug - US: Ehlers-Danlos Syndrome (LDN; low dose naltrexone)

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 Doug from the United States who uses LDN. Thank you for joining us today, Doug. 

Doug: Thank you, Linda. Thank you for having me. 

Linda: First of all could you tell our listeners what it is you take LDN for? 

Doug: I take LDN for a condition known as hypermobile Ehlers-Danlos Syndrome. It's a genetic disorder.  

Linda: Can you tell us your story? You know, when you were absolutely healthy, fine. How long ago was it when you noticed something? 

Doug: Well, I don't think I've ever been absolutely healthy and fine. Ehlers-Danlos is a genetic disorder that I've come to learn that I've had since birth but there have definitely been ups and downs. In my childhood I was quite affected by symptoms that I didn't identify. Nobody identified at the time and then through puberty and adulthood, I guess as a male, the testosterone sort of masks and camouflages a lot of the symptoms. I'm 47 right now. About 10 years ago I started to notice the symptoms coming back. Joint pain, muscle ache, fatigue setting in, all those things and that sort of corresponds to the natural decline of testosterone as we age, and my opinion is the protective mechanisms that it gives us with the Ehlers-Danlos. Eventually, through a series of consultations with my primary care physician, she had started to suggest some things as possible causes, and one of those was hypermobile Ehlers-Danlos, and I'm an extraordinarily flexible person. I always have been. But I never knew that that was potentially a symptom. Incredible fatigue, muscle ache.  

I had been on a series of medications for that. I was on some light duty opioids for a year or so. A whole lot of non-steroidal anti-inflammatories. Ibuprofen. I was taking so many ibuprofens a day she eventually suggested that I move to a longer acting anti-inflammatory known as meloxicam, at least here in the states. I was on that for a number of years. It definitely helped. It took the edge off a lot of things. I was pursuing the diagnosis of Ehlers-Danlos for about a year and a half. We eventually got my daughter diagnosed and then I was diagnosed a year later. I'm sorry six months later. Immediately following that I started to really educate myself on the condition and things I can do to to support my health and and my well-being and I eventually got a phone consultation with Dr. Pradeep Chopra, who you've interviewed on here before; and I think he's on your your Board of resources or listed many places in affiliation with LDN. That's one of the first things he suggested, that he recommends all his patients try it, and it works for a great majority of them, some of them, not at all, some of them less than ideally, but he suggests, should suggest, that everybody at least look into it. So I did. I got a hold of my primary care physician. She was familiar with it in the high dose used for addiction. She had never heard of any sort of low-dose guidelines or use. I happen to bring with me to the appointment with her the three guides that are on the LDN Research Trust website. The prescriber guide, patient guide. I printed those out. Brought them with me. They're, in my opinion, the best source of information out there for a newbie who's not familiar with it. She read through, and I left that appointment with a prescription. I started very shortly after at a low dose, like 1.5 mg, and for me, I had benefits immediately. I was surprised. The very next day for me was quite abnormally above average, and I thought it was a fluke because we have better days and not so better days; and the day after that was the same, above average. And it just continued above average days in a string, which is very abnormal. I went about two weeks, and I doubled my dose, and the days immediately got better again.  
I stayed that way. A week following that I went up to 4.5 mg, and then eventually rounded up to 5.0, and I've been at 5.0 ever since. It's been right about a year now, and I feel fantastic. My daily aches and pains are minimized. Pain for me, discomfort for me, used to be something I considered in kind of like every decision that I would make. How I feel right now? Do I want to go do that? Is it going to cause me to be more comfortable later? It's still in my mind, but it's not a component of my daily decision making anymore. It's just fantastic.  

Something I was not expecting at all was the reduction in fatigue and the incredible boost of energy that I have. If I would do anything physical I would, you know, feel like I kind of got hit by a truck or something. It just laid me out for maybe a day or two. Now, that recovery period is almost nothing. I can do something. I can be extraordinarily physical, and I will be tired at the end of the day, and perhaps the next day I will still be a little tired, but I will not hurt. It's just has completely changed how I exist as an adult. It's been phenomenal.  

Linda: When do you say you had the symptoms as a child being genetic? Did you know anybody else in your family who had had it prior to you? 

Doug: So far, I am, and my daughter, we are the first in our lineage, that we know that is diagnosed or that demonstrates any symptoms. Both of my parents are notoriously not flexible at all. They have no symptoms of any of this. My father remembers his mom, my grandmother, at 80 years old demonstrating some extreme flexibility. Just snapshots in his mind. He's seen me do some things and then he'll mention hey Doug, I remember watching you do that there that I saw my mom do that when she was 80 years old. So that's the nearest link that we potentially have. Somehow, he has zero symptoms of anything. Which is not a traditional inheritance method for Ehlers-Danlos. 

Linda: So you said that your symptoms were masked once you hit puberty. Up until puberty what was it like for you as a child living with this? 

Doug: I had a lot of coordination issues as I guess is common. I would trip and fall, twist my ankle, I thought it was norm, usually to come in from recess having rolled your ankles multiple times, so limping back into the classroom. I didn't know that it was just me. You know, little kids are oblivious to things. I had fairly significant growing pains, but that's always passed off in children. You'll get over it. You outgrow it. I never did. It was minimized later on as I got busier in school and life and everything else.  

I had also migraines as a child. Fairly severe migraines. They all went away in like middle school, puberty area. I don't recall having any gastrointestinal issues that are very common, but I do have some of them now as an adult. 
Linda: So as a child nothing was investigated. It was all just put down to growing pains? 

Doug: The growing pains, you're a kid, we were not in a big city with a lot of medical awareness. I grew up in a small town of 5,000 people with one physician in town. So there wasn't a lot of visibility of anything like that, and this was also 40 years ago.  

Linda: You were saying that your daughter was diagnosed before you? 

Doug: Yes.

Linda: It just seems strange that you weren't diagnosed first. So was it her diagnosis that bought the medical attention onto you? How did that go? 

Doug: Yeah we kind of both came to it at a similar time. Uh she had been having, which I've learned is very common with females, a lot more of the GI issues and she had severe migraines for a couple of years. Also at the onset of puberty where females typically get worse and boys typically get better, so she had been having these issues and had made the rounds with neurologists and things. I had been having separate issues talking with my physician and we both sort of were keyed into or learned the words EDS all at the same time and started to compare things and the reason she got diagnosed six months before I did is because nearer to us is a children's hospital that has an EDS clinic and we were able to get an appointment with them relatively quickly. I think we waited three months to get an appointment. They won't see me as an adult. I ended up having to call around and I got an appointment at another Children's Hospital two hours drive from us. They did not have that limitation of seeing adults so I was diagnosed by genetics at a children's hospital and so was she but different hospitals.  

Linda: Was your daughter offered anything different than you were offered in the past once she'd got the diagnosis? 

Doug: No she's been offered similar meds. We both see the same primary care physician, so she's been offered all the same meds I have. She hasn't thought it wise to take any of those yet, or tried any of them yet. I have urged her to try the LDN also with this. It's been offered via the physician and she's not ready to try that yet. But she knows the success I've had with it, and she knows how she could obtain it. So that's good. 

Linda: When she's ready. 

Doug: Yeah exactly. You can't force feed somebody to take anything, and you have to appreciate LDN is still a drug. There are people out there who want to get worse before they take LDN, but if you can get their mindset around that, if you take LDN you're not going to get worse, hopefully, and that you will improve. You can't make people take it till they're ready. You can only teach people and portray information, present information.  

Among the benefits I've had, again as I mentioned, the decrease of fatigue and the incredible boost of energy. I have been much more active and since a lot of the impact of Ehlers-Danlos is, you know, joint and muscle issues being a lot more active has allowed me to. I've increased my muscle bulk, muscle density. I get out and walk six to ten miles a day. A couple of years ago I would have been destroyed just by walking one mile. I would be sore the entire next day just walking a mile. Now that's nothing to me now. And I feel great afterwards, and it has allowed me to really improve my day-to-day. 

Linda: You were talking about gut issues. What did you actually have wrong with your gut at that time, and have you altered your diet? 

Doug: I have not altered my diet. I think my gut issues are fairly minimal. I think I have kind of a slow-fast digestion cycle, if that makes sense? Some days it goes quickly. Some days it goes slowly. But it is very minimal compared to a lot of the gut issues that I've read that some of the Ehlers-Danlos patients have. I cannot say whether LDN has helped the gut issues. I have no awareness as to if there was any benefit for me with that.  

Linda: So if you were to have rated your quality of life on a score of one to ten prior to LDN with 10 being best what would it have been? 
Doug: I would say maybe a 5. 

Linda: And now? 

Doug: Now I feel better than I ever have as an adult. It's a 10, but is my 10 the same as somebody else's, you know, a normal person's 10? I don't know. My 10 is probably a normal person's 8 or 9 but I have never felt this good. 

Linda: That's amazing. 

Doug: LDN is currently the only drug that I am taking for any sort of pain or other benefit. I'm not taking the anti-inflammatories. I'm not taking anything else. 

Linda: When you first started did you have any introductory side effects? 

Doug: Yes I did. There was one: I had the dreams. The weird dreams. There were vivid dreams. They were never scary or frightening or anything like that. I'm a person that typically doesn't dream, maybe once or twice a year I'll have a dream that I'll wake up and I'll remember, or have awareness of a dream, and then suddenly I was doing that every single night, and I would wake up disoriented. I would just say disoriented, like I would wake up and say what was that? What happened? Just be momentarily confused. Then I was fine. And that lasted maybe 3 or 4 weeks, and perhaps now I'll have one of those maybe once a month, which is maybe closer to my normal cycle of being aware of dreams. But that is the only side effect that I'm aware that I had.  

Linda: How long was it before you noticed something? Notice the side effects? Notice an increase in benefits?

Doug: It was literally the next day. The very next day I had improvement. I didn't know that it was improvement from the LDN. I just thought I was having a sort of a better than average day. and it just continued. And it scaled the better days directly as I stepped up my dose. 

Linda: How long did it take to get to where you are today? Do you think in terms of benefit? 

Doug: Probably a month before I scaled up to five milligrams, which is the dose I'm on now and I said you know, I'm feeling really good right here, I will stay at this dose.  

Linda: You've been stable since have you? 

Doug: I've been very stable at that dose. I have considered perhaps going above just to see if there's another end of the curve for me, but I feel so good I haven't really seriously entertained modifying or trying other doses. I'm very, very happy.  

Linda: Do you take any supplements? 

Doug: I do. I take magnesium. I take zinc. I take extra vitamin C. I take vitamin D. These are all things that I understand those patients are known to have absorption issues with, so I take supplements, of all those. I think they have been beneficial for me.  

Linda: What would you say to other people who probably haven't been diagnosed but can relate to what you're saying? What would be your advice to them? 

Doug:  Advice? If you think you have this sort of condition, do some research into it. Educate yourself about every aspect that you can find about it. Try to find mechanisms and strategies that help to improve your quality of life. And pursue a diagnosis, or at least understanding in the medical community. You know, diagnosis isn't the end-all be-all, but finding the right things that can help you are important, diagnosed or not. There's a lot of strategies, and basically a recipe book of things to try that help a lot of people. 

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

Doug: Thank you for having me Linda. It's been wonderful chatting with you.  

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. 

 

Alison - US: CFS/ME (LDN; low dose naltrexone)

 

 

Yusuf (YP) Saleeby, MD - Update on COVID, Long COVID and LDN (LDN; low dose naltrexone)

 

 

Jenny - US: LDN, CRPS and Small Fibre Neuropathy (LDN; low dose naltrexone)

 

 

Anita - US: Multiple Sclerosis (LDN; low dose naltrexone)

 

 

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

 

 

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

 

 

Connie - US: Hashimoto's (LDN; low dose naltrexone)

 

 

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 Elsegood: Today we're joined by Sandi from the US who takes LDN for multiple sclerosis. Thanks for joining us today Sandi. 

Sandi: I thank you for having me. I love LDN. I want everybody to know about it. 

Linda Elsegood: So when did you first notice your MS symptoms? How long ago was that? 

Sandi: I was diagnosed in January of 84. And totally paralyzed by that fall and with a lot of help from God I got back to being fairly normal and I walked without aids until 2016 when I had to have back surgery. And so I yeah I'm doing the impossible which people think I shouldn't be doing. So I'm pretty thrilled that I've not being completely wiped out with the stupid disease because it's a horrid horrid disease that I want no one to have. 

Linda Elsegood: Exactly. So can you tell us what was your life like before you started LDN? 

Sandi: Immediately before. Okay with the MS I also have a disease called interstitial cystitis which is also called painful bladder disease and so my life before LDN I would literally have to go to the bathroom every 20 minutes to two hours when the interstitials kicked in, and with the MS I was had overactive bladder terribly bad. And so I couldn't go more than an hour or two without having to go to the bathroom and that was day and night. And so with LDN once I started that my bladder has been nearly normal, which is absolutely amazing. Before LDN I couldn't drink my coffee because it's a diuretic and so it would go right through me. But now with LDN I'm so totally normal like you go five six hours during the day without having to use the restroom or I sleep eight hours through the night. Eight to ten hours through the night without having to get up. It's amazing absolutely amazing the difference that it made. 

Sandi: And then something I didn't realize and I had been keeping track of it because it was something odd. I started going to the bathroom in the other direction too, having bowel movements, and before LDN I was perpetually constipated. I sometimes didn't go to the bathroom for five six days at a time. But in 16 after I started taking LDN I started going to the bathroom. What's this? Why? You know it's different and after I looked into it and started studying it a little bit I went well, of course the LDN has got me regulated that way, too. Which is an absolute miracle because being constipated for back then, what was it 25 years, that's a long time, and so it totally reshapes my whole life. I love it, I love it, I love it. 

Linda Elsegood: So apart from the bowel and the bladder problems prior to LDN what were your other symptoms? 

Sandi: With the MS or yes well, I have abnormal feeling below my waist. I can feel that it's abnormal. Fortunately, MS has not affected my brain. I'm still very cognitive and the neurologists agree with that. I have balance problems and I can't walk far, but I can walk. So I have abnormal feeling just throughout my body. My hands when I was first diagnosed were impacted but they are no longer a problem and my arms were never impacted. So those are good things. My eyesight was never changed with the MS but the drug that I took for interstitial cystitis has given me macular degeneration, and so I have lost the central vision in one of my eyes, but that that was the drug that caused that. And the fatigue, that's the big one, as most of us with MS have extreme extreme fatigue, and that is something that I have not found anything that helps with that. Get down. 

Linda Elsegood: Didn't the LDN help with the fatigue? 

Sandi: Not that I noticed, no. I wish I wish that it did but no. I found nothing that really helps with the fatigue. 

Linda Elsegood: Have you looked into diet?

Sandi: I tried a diet when I was first diagnosed and on that diet I lost so much weight I weighed under 100 pounds and I'm five foot almost five six, and so diets don't work for me. I wish they did, and they're extremely complicated, so I have troubles eating, as it is so to go on a diet. I can't do. It doesn't work for me. 

Linda Elsegood: Okay so just prior to starting LDN if you had to rate your quality of life on a score of one to ten and ten being the best what would it have been? 

Sandi: Before? Yes. Probably a three. Okay and now, well I I get more I get more complicated as I go along. This past March I broke my butt, I just fell onto the floor and I got to sacrum fractures and spent 28 days in the hospital and so without that my quality of life would be an eight. I was working part-time. I was doing really well, until I got COVID in 21. Spent 21 days in the hospital and lost my dad to it in 21. But I was coming back from that and then I fell and broke my butt and so prior to all that, I would say that my quality of life was about an eight. Right now I'm more six seven-ish just because of the healing that's still taking place in my butt. 

Linda Elsegood: Has LDN helped with the pain at all do you think?

Sandi: I think that it has because there were a couple times within that hospital state that I did not have my LDN and I think once I started back on my dosage the pain lessened. It didn't go away because obviously it's two fractures, but it I think that it did help, and I think that it does help I'm not nearly in the amount of pain that I used to be in before LDN because I've always had hip pain, and there's a spot in my butt, they never really knew what was going on, and that's why I had back surgery. But that has always kind of been there, but after the LDN it definitely diminished. So I think it does help. 

Linda Elsegood: And did you recover from the back surgery okay? 

Sandi: I did. The back what was happening was there was a nerve that was hitting something. was hitting on a nerve. and I would just be standing at work and it would drop me. and nobody quite knew what it was and then they found out that my S1 disc was problematic and so they went in and fixed it and it stopped that.

Linda Elsegood: And what caused your fall your last fall where you fractured two of your bones? 

Sandi: These fractures that I just had in March, I had just come off of my fourth colonoscopy in a year, and my legs just gave out and I just basically squatted to the ground, but fractured both sides of my sacrum. Yeah don't do it. I like to tell people bust your butt doing the things you love, just don't bust your butt the way I did. It's not worth it at all. 

Linda Elsegood: Yeah sounds terrible. 

Sandi: It is. Yeah I I recommend nobody else do it. 

Linda Elsegood: Yeah. It's not good. So how did you know initially that you had MS?

Sandi: Well, I was back in college and all of a sudden my butt went numb. It was like I had sat too long and I went to the doctor at that point and said my butt's numb. He said oit might be MS. Well that cleared up, and then I had taken a terrible fall when I was hot potting in Yellowstone Park, and I kind of fell down the mountain. I gotta admit I was partying. Yeah. So we thought that was it. But then I was working for a theater company and we were loading up the bus from the second story loading dock and I fell out of that loading dock and ended up with terrible terrible headaches that sent me to the neural neurologist for the first time. And so they diagnosed MS at that time. 

Linda Elsegood: So you've got an expert faller one way or another. 

Sandi: Yeah exactly. No it was kind of just an odd way to go around getting diagnosed 
Linda Elsegood: But were you on any treatments at that time? Anyway treatments? Treatment? Did they offer you any help? 

Sandi: Oh yeah, no in 1984 they really didn't. I took some steroids, not for very long, but they didn't have any treatments ,and so after the recovery from the total paralysis where I learned to crawl, then walk with crutches, then walk with the cane and then walk independently, I was pretty normal, other than my bladder and my bowel. I mean I walked very stiffly; it was an abnormal walk, but a lot of people didn't know and so I walked like that until my back really gave out. 

Linda Elsegood: You very lucky with not having cognitive problems. 

Sandi: Very lucky. Yeah, yeah that that that to me would be the worst, yeah, I like being able to think and respond and obviously talk. I'm very very grateful because it could be a whole lot worse. I have to have to all the credit to God because he's the one that's done it. I'm very blessed. Very very blessed, because at the beginning the doctors had said you will never walk again and they guaranteed that I wouldn't walk without aids and I did. I walked without aids for 25 years. That's a long long time isn't it?

Linda Elsegood: It is. Yes. It is. Are you able to do any exercise or are you having to be very very careful right now? 

Sandi: Right now, and I've got people in praying about this, is there's kind of a fear of walking, just because I don't want to fall again, and so I have planned that I will start going again to the YMCA and rebuild my muscle. It's not like me to be scared of walking, but I have been. But I am just now getting back to overcoming that. 

Linda Elsegood: Well that's good. 

Sandi: I'm going to get back to me, get back to, yeah. (laughter) I do live alone so, I'm totally on my own. As I said, my dad had passed from COVID last year and he lived next door to me, so. So, this whole year has been a total relearning curve. But as I said God and LDN are my two staples that I will never quit never. 

Linda Elsegood: You've done remarkably well, absolutely remarkable well. What an inspiration. 

Sandi: But I hope I hope I am because it's a mindset; you can't you can't give in to the negativity. And I love my doctor that had prescribed LDN. I think that I found out about LDN on my MS websites back in 15 or so, but I am her first patient that she's put on it, and she puts anybody with the autoimmune disease on it now. And because of me. Because it has worked so well for me, she now readily prescribes it. 

Linda Elsegood: Which makes me happy, because you've been on it's a long time. So she's been able to see that it hasn't done you any harm, and you'll continue to improve, so that's amazing. 

Sandi: Oh yeah, no side effects whatsoever. And I love my dreams. I keep saying that if I could totally remember them all the time I could write sitcoms. They are so funny yeah. I I absolutely love the weird dreams. 

Linda Elsegood: I feel robbed now I never had any dreams. 

Sandi: You haven't? That's the one side effect that I do have from it. Like I said, I think they're crazy. I love them. 

Linda Elsegood: So the doctor that prescribed the LDN for you, was that your own doctor or did you have to go looking for an LDN doctor? 

Sandi: No she was my own primary care physician. 

Linda Elsegood: That's good. 

Sandi: Yeah and like I said, she is sold on it now She's absolutely sold on it that she will prescribe it for other people that come to her. So that's a good thing when I tell people about LDN, here in my community, at least so I can tell them you know, Dr. McIntyre will prescribe it for you if you want to try it, she will do it. 

Linda Elsegood: Did it take her a long while to decide to just prescribe it for you? 

Sandi: It didn't. My doctor knows that I do a lot of research in all areas of MS and autoimmune diseases mainly. And so she knew that I knew what I was talking about. She has been very supportive of me because I have gone around the world with stem cells for adult stem cell therapy. And so she knows that I do my research. She knows I'm not just slinging it at her going let's try this. She knows. So she was very good about prescribing it readily, easily because she knew I really looked into it. It wasn't just a spur of the moment thing. 

Linda Elsegood: And how did you get on with the stem cells? 

Sandi: I have some friends who I call my stem cell gurus who matched me up with different places, and the progress and the promising results of them. And so that's the other thing I like. I like adult stem cells. My last ones I had were in 19, and I went to Chicago and Mexico and those stem cells have totally eliminated my problem with heat intolerance. I used to have to have the air conditioning blowing full blast in the summer. This summer I've turned my air conditioning on maybe four times the whole summer and we've had a record hot summer in Montana. So yeah that's another thing I'm sold on, stem cells, and yeah I like those. My ones from Israel I found I walked totally normal, but only for nine weeks until they've they wore off. So you have to keep getting them to keep them working, but it proved to me that they work. There's going to be time that I go get more and I think they work well with the LDN. I think they're in a similar league for me that they're promising in all sorts of areas. 

Linda Elsegood: Well, we wish you all the success with your healing. We hope that you’re back up on your feet soon. 

Sandi: Thank you. The one thing I will say, and I follow LDN groups, I'm on several of them obviously, but the one thing that it has not helped me with at all are dry eyes, and I see people saying that they get help from that. But for me that is something that it has never helped. Which I wish it would but it has not. Okay. Everybody's different, so. 

Linda Elsegood: Exactly. 

Sandi: May I ask what you take it for? 

Linda Elsegood: MS. 

Sandi: You do. Okay. You too. What's your story? 

Linda Elsegood: Oh you'll have to listen to it. You'll have to Google me and listen to it. 

Sandi: Okay 

Linda Elsegood: 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