Linda Elsegood: Welcome to the LDN radio show brought to you by the LDN Research Trust I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.
Today we're joined by Kara from the United States who uses LDN for Multiple Sclerosis. Thank you for joining us today, Kara.
Kara: Thank you for having me.
Linda Elsegood: Can you tell us how far back was it when you first noticed an MS symptom, even if you didn't know it was a symptom?
Kara: Oh my goodness, probably when I was first at university, my first little episodes began. I had UTIs that no one could explain why I kept getting them, and couldn't really get rid of them ever. And I had some issues with some muscle spasms, but very minor things. And then 11 years ago this month I had an episode of trigeminal neuralgia. I was driving; I had a brand-new car. It was my first day driving my brand-new car and I had taken my children to school and I was on my way to work, and I had to pull off on the side of the road because I almost passed out from the pain. I don't even know what I thought. I thought I had a tooth abscess or I thought maybe it was like a heart attack because I feel like women don't pay attention to those things and it can be jaw pain. So all this is going through my head, and I went to the ER, and they said there's nothing. It's not a cardiac issue. It's not this. It's not that. We don't know what it is. I saw a dentist the next day who thought it's neurologic, and that was the first time that this was even on my radar. I was just so stunned that that specific ridiculously bad pain was something related to a neurologic condition. I just didn't have any idea that that could happen. At that time I ended up having an MRI for diagnosis of my MS. When I had that MRI it actually showed that I had thyroid cancer at the same time. So in a very strange way MS has saved me from having a much worse cancer diagnosis because it was caught so early on that MRI. While I was dealing with that I had surgery, and went through some stuff. I began the LDN.
I'm actually a lawyer who typically has represented doctors and hospitals and those sorts of things, so I have a lot of resources; and my husband is actually a physician as well. I started trying to educate myself as much as I could about the inflammatory process and what that actually can mean, and how that affects everything, from depression, to cancer, to MS, to I don't know… your mood. And with the LDN, I've actually not started a disease modifying therapy. It ended up that I had cancer three more times after that initial bout. Not with the thyroid because it was gone. And it just started this huge health journey for me. I never really had any health issues. I was never really super heavy. I was never really super troubled by anything. And I feel as though, looking back, what a gift that was. But being on the LDN has just made me sort of born again. I think everybody should be on it. I think it's wonderful. It has done so many good things for me. It has lowered my inflammatory markers. Our prior home was just filled with stairs and maybe three months after I started the LDN, maybe four months, I was at the top of my stairs and I realized I had just run up the stairs, which I had not physically been able to do in I don't even know how long. It was like I was a child and just forgot myself and did it. And it was in that moment that I realized that my balance was so much better.
For me, my biggest things besides my inflammatory markers being somewhat beaten down from the LDN, my biggest two biggest things were fatigue and balance that I was helped most with the LDN.
Linda Elsegood: If we go back to prior to your MS diagnosis, what kind of things were happening transiently at that time?
Kara: That was when I was probably my most clueless about myself. I was litigating, so I had trials, and my work was incredibly consuming. And I had two children, and I was just fatigued beyond fatigued, and I couldn't understand what was wrong, because I've always slept well. I've always had good bedtime habits and that sort of stuff. I would get home from work and it would be 6:30 and I would put my pajamas on, and just be preoccupied with how soon can I get to bed. That's just bone tired fatigue that I liken it to jet lag. I felt like I was jet lagged, and I had just gotten off a red eye, and I had slept a solid eight, nine hours. There wasn't anything to explain that. The other thing was it was falling. I had a couple of falls. I broke my ankle very very badly. I fell down stairs, ironically. And it became apparent that I was having some sort of balance issue. I had my eyes checked because I thought maybe, maybe I'm just clumsy because I'm not seeing well or something, and everything checked out. It just really was something that I kept pushing to the side until I no longer could, and I had to really look in the mirror and say this isn't a normal thing to have happen.
Linda Elsegood: And how long from having the problems with your UTIs to actually being diagnosed, how long did that take?
Kara: I'm embarrassed to say 20 years. Really. It was a long journey, probably lengthened by the fact that I'm very stubborn, and I'm a bit of a control freak, and so for me to have something that I couldn't control, that I couldn't fix, that wasn't making any sense logically, it was very difficult to digest, and realize that I actually truly needed help. I figured that part out and I went to my neurologist, and I had looked up LDN, and I asked him to prescribe it. He was an older gentleman, but also vegan and into all the ancillary things we can do to be better, and he completely scoffed at me and he said, “You're already gluten-free, you're already eating this, you're already eating that, I guess you'll be completely cured if you begin this”. So I left without my LDN, and I went to my primary care physician and I printed up all these papers about LDN, and I walked in and I was ready to plead my case as to why I would like to start this, and he laughed and said he’s been prescribing that for 10 years. I was like, oh why didn't I come to you first. He was very knowledgeable and I feel incredibly lucky that not only did I find out about LDN, that I found a provider that was willing to work with me and educate me about titrating up, and working through that part of it. It has just been utterly a game changer for me truly.
Linda Elsegood: So how long have you been taking LDN now?
Kara: Almost 11 years. Wow. Yeah a solid 10 and a half years.
Linda Elsegood: So what was your fatigue like once you've been on LDN a while?
Kara: Normal; it was a normal logical thing that if I were up late I would be tired, but if I were going to bed when I typically do and sleeping well, I felt great in the morning, and I didn't crash during the day. I don't really use caffeine, so for me it was just incredibly noticeable when I was dragging, that I was literally coming in the door, can't wait to get on my jammies and go to sleep. It was night and day difference. It literally was as though I had been sleep deprived for so long even though I wasn't. But that's how it felt. It felt as though I had been sleep deprived, walking around in a haze, and then the clouds lifted. I think the other thing is I think cognitively that contributes to brain fog. Just that sense of - I don't know when I was fatigued, I was preoccupied with it. I was thinking about it. I was thinking can I put my head down on my desk for 10 minutes nobody will know. Just things that are kooky when I look back. And I thought good lord, why didn't I say something before. Again, I think that's probably part of my personality, but boy it really, really, really helped me a lot.
Linda Elsegood: What about UTIs? Are they still an issue?
Kara: Nope, zero. When I was having the UTIs, it wasn't as though I had poor personal hygiene, or I didn't understand the mechanisms through which those terribly unpleasant infections occur. I knew all of that, and what's ironic is that even before my diagnosis - my oldest is about to turn 24, and when I was pregnant with him I had UTIs so badly that I had to be on an antibiotic my entire pregnancy, and then six weeks postpartum. Looking back, it was the MS. But I didn't know where to put that. I just thought, oh how odd that unfortunately, I've now started getting UTIs again, and I'm pregnant. And I don't know why.
Linda Elsegood: It's funny you should say that. I had Epstein-Barr - we call it glandular fever - when I was 13, and I had like a year of school, I was really really ill. But when I was 17 I started to get UTIs. One after the other after the other, and I became very aware of my bladder, and I could feel if I was dehydrated. I needed to drink more to flush it out, but it was just awful. I mean one load of antibiotics after another after another. And so I understand where you're coming from.
Kara: Well, I literally have water with me at all times, only because I think I have PTSD from having had so many UTI. I guzzle water constantly still.
Linda Elsegood: Yes. It's quite funny, I saw a nurse and she said, I always have beside me a pint glass. If you do pints. But I've always got this glass, and she wanted to know if I was drinking three pints a day. I probably drink five; I don't drink just three. I know that some people struggle, and she was saying tea and coffee don't count, it has to be water.
Kara: You're the only other person on the planet that does drink enough water the same way. I feel almost defensive when I'm questioned about my water intake by a new healthcare provider or something and same thing, really, I drink way more than that and I'm very good.
Linda Elsegood: The only thing is as I've got older I pay for it in the night.
Kara: Me too. Same.
Linda Elsegood: There isn't a magic cut-off time where you can drink all day, and then you can go all night, and I quite often wake up twice.
Kara: I know I'm like a puppy, that you have to put my water away at a certain time.
Linda Elsegood: But it's preferable to have in UTIs.
Kara: Oh my gosh yeah. Because you're still peeing in the middle of the night with the UTI.
Linda Elsegood: Exactly exactly. So when you started LDN way back, what dose did you start off with? Can you remember?
Kara: Yes I started at 1.5mg. I was on that dose probably about two months. My only side effect that I've ever had from LDN, I had called them pregnancy dreams, just like very vivid dreams that I get if I'm pregnant, or if I take Benadryl. So not anything terrifying, just very vivid compared to normal dreaming. That lasted maybe three weeks; I don't even think a month. Then I titrated up to 3.0mg, and I was experimenting with different methods of getting the LDN. I had troches at one point. They're like the little gummy things. I then ended up just on the capsules, and I went to 4.5mg, and for me the 4.5mg has been an optimal dose, and I've had good luck with it, and great success.
I ended up having colon cancer twice, and a couple other little things, and one surgery, and I came off of it briefly. I was so anxious to get back on it because I didn't know if I would start feeling poorly again, or how it would work, but I have to say that even having surgeries, in that post-operative time, that can be unpleasant. I haven't taken a narcotic this entire time, and to me, that's amazing. I don't know what my little pain receptors are doing. I do have pain, but I've been able to navigate around that, and I'm very, very grateful for that because I've not had to take a big break from the LDN due to any of other ancillary stuff going on. It's been such a pleasant thing, and as I said, I when I speak about it to others, I'm sure I look a little nutty because I'm like, "Oh my god it's just so good, you should try it, it's cheap, there's no side effects and who knows, it might work for you" I could be on a billboard.
Linda Elsegood: That's fantastic. So, what would you say to other people who've got MS, who are a bit skeptical about taking LDN because they don't like drugs, any drugs?
Kara: Yeah, I don't either. I am vaccinated and all that good stuff, but I definitely try to avoid taking unnecessary things, and for me, this is an immunomodulating therapy that - I don't care how healthy you are, everybody's immune system could use a little bit of fine tuning, I think, and I can't imagine not choosing to do everything I can to be as well as I can, and for me LDN fits in that category. Because it's an easy to use, effective drug that doesn't affect - I don't even know how to say this clearly - I feel like a lot of the drugs that people take, whether it's like a valium or something like that for muscle spasms, or stuff for fatigue or the rest of it, they all have a lot of side effects, and I feel like there's a lot of people that don't like to take drugs, that don't even count those as drugs, and they are. For me, LDN has made me way more cognizant of my immune system and what I can do to keep it healthy, and eating well. Actively chasing that goal of health every day is what I do, and I think it's silly to not have an open mind and give it a try.
Linda Elsegood: Thank you very much for having shared your experience with us today.
Kara: You're welcome. Thank you again for having me.
Linda Elsegood: Any questions or comments you may have please email me at Contact@ldnresearchtrust.org I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.