LDN Video Interviews and Presentations

 

Deena - Canada: Update on her UCTD (Undifferentiated Connective Tissue Disease), Chronic HSV2/Shingles, Chronic Pain, IBS, Histamine Intolerance, Vestibular Migraine, and Insomnia (LDN; low dose naltrexone)

 

 

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

 

 

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.

 

 

Jenny - US: LDN, CRPS and Small Fibre Neuropathy (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)

 

 

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 

 

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.

Linda: Today we're joined by Kay from the United States who uses LDN for Hashimoto's Thyroiditis and fibromyalgia. Thank you for joining us today. Kaye. Thank you for having me. So could you tell us how long ago was it when you first got sick?

Kay: Honestly it was probably 40 years ago. I'm 58 now and when I completed high school, I started having symptoms of thyroid problems. So it was it was a very long time. So what did they do at that time, such a long while ago? They told me it was anxiety and they totally the doctor totally blew it off and they never did any sort of testing. They never did blood tests. They didn't do an ultrasound; they didn't do anything. Even though I had a constant sense of a lump in my throat and issues with sleeping and anxiety, and quite a number of issues that come with thyroid problems. And it wasn't until after I was married and I had two young children and I was working full-time that I just simply got to the point where I just felt like I couldn't function. And I went to the doctor. And he finally took it seriously. That was a different doctor, but unfortunately my labs for my thyroiditis all they ran was simply the TSH and they said, oh you're perfectly fine and they diagnosed me with fibromyalgia at that time. So I was kind of stuck with that diagnosis for a period of time as well, without any real good answers at that time.

And that kind of progressed, and it was probably another five years or so before anything more significant came out of that. I noticed one day a very large lump in my throat and went to the doctor, ended up with a surgeon and had my thyroid removed, and they diagnosed me as having Hashimoto's. I had two different types of growths on my thyroid and a very large cyst, and the surgeon actually said that it was the most diseased thyroid he had ever seen, and he was absolutely convinced it was cancerous. It turned out not to be, but it was clear why I had been so ill and having so much difficulty in functioning at that point. 

Linda: Wow. So what did they put you on once they removed the thyroid? 

Kay: They simply put me on just a T-4 only medicine and I felt absolutely terrible, and I literally thought that I was going to die. I thought the doctors were going to let me die. At that point my children were probably 14 and 16, and I simply just hoped and prayed that I would live long enough to see them graduate from high school. That that was how bad I felt.  I could I could hardly function. I was continuing to work full-time because I needed to, but I did not have any emotional capacity to deal with raising teenagers and having a husband and living life. It was just incredibly difficult and I just started googling and looking for answers, and thank goodness for the internet these days, right, because you know we can find stuff we couldn't find before So, I ended up at a doctor that was more holistically minded, and that doctor put me on Armour thyroid, so I had the T-3 and the T-4, and I started to feel like okay, I can live now; I can start to function. But I was still having a lot of issues, a lot of fibromyalgia pain.  I was having terrible insomnia. I was on multiple medicines to sleep. Dealing with a lot of anxiety, IBS, TMJ; I've got a laundry list of acronyms that I was dealing with. I came upon low-dose naltrexone myself, and I approached my doctor and asked her if she would prescribe it and she said yes, that she had a number of patients on it and she was happy to prescribe it.  So I kind of got lucky in getting a prescription for it. 

Linda: How did it affect you when you first started? 

Kay: When I first started taking it, really the only side effect I had was just vivid dreams. And I think I started it I 1.5 milligrams. That was fine. Did that for two weeks, bumped to 3 milligrams. That was fine, and did that for a couple weeks. Then when I bumped to 4.5 milligrams, I started to have some of the vivid dreams, and I bounced back and forth between 3 milligrams and 4.5 milligrams for a couple of weeks until I could just consistently stay at 4.5 milligrams.

Linda: And how long ago was that?  

Kay: That that was about 12 years ago. 

Linda: Well so you've been on LDN a long time.  

Kay: I have been quite a while, and I'm still on it. 

Linda: And do you have any thyroid issues now at all?  

Kay: I'm still dealing with some issues. About 4 years ago I ended up exiting a very toxic marriage, and doing that helped tremendously in reducing the amount of stress and anxiety in my life. I ended up changing to a different doctor, who really encouraged me to change my diet dramatically. So I eliminated all grains and all sugar, and that has helped tremendously. Reducing the stress, getting out of a toxic environment is huge. Just the emotional stress that happens takes a very physical toll on our bodies, and I think that often we underestimate the impact of it. And so for me, low dose naltrexone is part of a bigger package of things that I do to take care of myself. It wasn't the magic elixir that solved my whole life problems, because I had a number of things going on in my body, and a number of things going on in my life that needed additional changes to really create an impact.

Linda: What about the fibromyalgia pain? Is that under control? 

Kay: It is really under control. I'm struggling with a torn rotator cuff, and so another problem like that, it still throws your body off. As you age other things start to go awry as well. But no as far as fibromyalgia goes; no I don't really have any fibromyalgia pain. In fact three weeks ago, I went on a hiking trip with a friend and I had no pain and no stiffness and no soreness after hiking like 15 miles a day through fairly rugged terrain. 

Linda: So that speaks volumes, doesn't it? 

Kay: It does speak volumes.

Linda: Now I probably know the answer to this question because you spoke about diet, which was going to be one of my questions. But because your doctor was looking at your whole body, not just your symptoms, did she recommend supplements for you to take as well?

Kay: This doctor is a male; it's different. He also was willing to prescribe low dose naltrexone, and he knows what supplements I am on, and he has not necessarily recommended that I change them, or that I add to it. I am on a number of supplements.

Linda: Do you take probiotics?

Kay: I do take probiotics. I also take magnesium, Vitamin C, Vitamin D3 and K2. Those are kind of my staples.

Linda: Yes, when I ask doctors what supplements they recommend, probiotics is always up there as the top one, as is Vitamin D. You're doing remarkably well. I can't believe that somebody who must have been like 14 at the time, had all these problems, and they were just swept under the carpet. But so many people tell me that years ago, and not that many years ago either, that it's all in your mind; there's nothing wrong with you; it's all in your mind, or you're depressed and give you antidepressants rather than finding out why you've got the symptoms, finding the root cause. I'm just so pleased that you have managed now to get your life back on track where you feel you're in control and you can enjoy a good quality of life 

Kay: Honestly I feel better now than I did 20 years ago. I have I have no anxiety anymore; I used to have a lot of anxiety. I had issues with sleeping; I am off all of my sleeping meds; I only use melatonin now for sleep. I used to live on over-the-counter pain medicines, Tylenol, ibuprofen; I only take them very very rarely now; maybe once a month rather than three times a day or more. Just so many things that have resolved.

Linda: That's amazing, because all the medications that you can take, some of them are quite toxic and also all medications carry the risk of some side effects, and the more medicines you take, the higher the risk of getting side effects, and then you end up taking the magic pill to combat the side effects that the original pills have made. So to actually cleanse your body of all of these other medications that you're taking, even though you're 20 years older now, you said you felt better; your body is 20 years older, but you're still feeling better than you did 20 years ago. That's amazing, isn't it? Apart from your shoulders - hopefully that will heal soon. How did you hurt it?  

Kay: I had a bone spur that tore the supraspinatus, which caused too much stress on the infraspinatus and so that one also had a tear, and kind of the whole the whole shoulder system just went downhill. We're still working on that. 

Linda: So you just want to rest it.  Are you, as much as you can? 

Kay: Trying to rest it, and then also exercise it and strengthen it, it’s working well. 

Linda: Well that's it: if you don't use it completely, you lose it. Well thank you very much for sharing your story with us today, Kay. Very remarkable. You're an amazing lady. 

Kay: Oh thank you, thank you. Now I just wish everyone well who tries the low dose naltrexone. Just don't underestimate the impact of changing little things in your life, because lots of little things add up to significant differences.

Any questions or comments you may have please email me, Linda, at linda@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.
 

 

 

Asher Goldstein, MD - His experience with LDN as a Pain Specialist; LDN Radio Show 2022. (LDN; low dose naltrexone)

 

 

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