Denise - US: Behçet's Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: Today we are joined by Denise from the United States who's a holistic health practitioner. Denise and her daughter both take LDN for Behçet's Disease. Thanks for joining us, Denise.
Denise: Thank you for having me.
Linda Elsegood: First of all, would you like to tell us about your story with LDN?
Denise: It actually started back in 2008. Well, it started before then, but I was unable to find a doctor who was willing to treat my symptoms until 2008. Back in the late eighties, I was diagnosed at Duke Medical Center here in the United States, as having chronic fatigue syndrome. And at that time they just said, well, go home, there's nothing we can do for you. I was in high school. I was exhausted. I was aching all over. I had mild fevers that would kind of come and go. I was not myself. I couldn't remember things. My grades were falling. It was very unhelpful to be told, well, we know you have something, but we can't help you. So I would just go to school. I would drag myself there. I would get through my day as best I could. I tried explaining to my teachers what was going on, that I didn't understand where it came from, but that I had chronic fatigue and that meant more than just being tired all the time. That it made it really hard to recall information.
So as I said, my grades started dropping. I was doing quite poorly in high school. In fact, I had a counsellor in high school when I went to look at colleges who said, well, you know, I wouldn't look too terribly hard, your grades aren't very good. And I was very disheartened because I had always wanted to work in medicine and. So I did the best that I could. My mom started taking over my chores so that I didn't have to do as much around the house. She didn't ride me as hard about my grades because she understood that I had a doctor's note that said something is wrong with me, but we can't do anything.
And I slept most of my free time. I would come home from school, I would eat something, and I would go to sleep, and I'd wake up the next morning, and it was time to go to school again. That went on for years, and in around 2008, I was able to find a doctor, Dr Webster who - believe it or not - I found his name because he was a doctor that Suzanne Somers had worked with. And I had read one of her books. And I thought, well, if there's somebody out there who's willing to listen, I'm willing to give him a try, and I met with him. He was an ER doctor who was now working in his own practice, and he was very familiar with chronic fatigue syndrome.
At that time, I was only familiar with allopathic or traditional medicine and didn't have any experience with anything outside of that, anything nontraditional. So he started doing some tests on me, and looking at my energy levels, and just doing some kind of things that at the time I thought were very odd. But I went, hey, you know, this guy says he can help me, so I'm going to give it a try. And then he wrote out a couple of prescriptions, and he said, go take these, and I'll see you back in a couple of months, and we'll see how you're doing. So I went to have them filled. Well first I took them to a regular pharmacy, and they couldn't fill it. And I thought, Oh boy, what is this? And they pointed me to a compounding pharmacy. I wasn't even very familiar with them at that point. And they filled it, and they kind of had that look on their face that says, Oh dear, we see something's really wrong with you, and you're going to take this medicine, and you're probably going to have to take it for the rest of your life. And that kind of scared me because I hadn't had any experience with taking something my whole life because I thought that's just something reserved for the very, very sick or those who are very advanced in age. And it felt very frightening to me too, to be in my twenties and be told I was going to be on something possibly for the rest of my life.
But I had my prescription filled, and I took it just like they said. And I started feeling better, but not right away. It took some time for me, and unfortunately, by the time I started feeling better, that doctor moved to another state. So I had a large lapse in taking the LDN because I couldn't find another doctor who would prescribe it.
They didn't know what it was. They weren't willing to go on the fact that I had taken it in the past.
So I went for several years without taking it, and that was a huge uphill battle at that point. I could feel what it had done for me, even though at the time it didn't feel dramatic. It wasn't like an overnight, where you take this pill and the next day you're all better. It was a gradual kind of thing. But once it was gone, I really noticed it. I was able to find another doctor about a year and a half ago who allowed me to go back on it. And I have been so blessed by this particular substance, low dose naltrexone. It has really enabled me to live a more normal life.
I'm a mother of five kids. I am a holistic health practitioner. I have a concierge service. I'm a mom and I do a lot of reading and research, and when I'm able to get my medicine as I have been, I can retain information. I feel like myself, again, I know what's going on with my body, I understand better, I feel I'm a lot more in tune, I sleep better, I've been able to cut my asthma medication in half without having any side effects.
I was diagnosed with dry eye, and when I started taking LDN again, after a couple of months, I noticed that was better. I use eye drops, just a regular over-the-counter kind of a tear replacement once in the morning, and that's it. My eyes stay fine through the rest of the day. It's really perfect. I have noticed my interleukin six markers have come hugely down. It has been wonderful. The inflammation in my body has been decreased to the point that I don't think most people would even know that I have chronic fatigue syndrome because it's in remission. I can stay awake all day long. I no longer need to take naps. It has really been hugely beneficial to my family and me.
Linda Elsegood: Well, that is absolutely great. You were telling me beforehand that it was difficult to get LDN prescribed for your daughter. How old was she when she got sick?
Denise: Let's see. She's 14 now, and I guess it started when she was around 10 or 11, with the onset of Behçet's Disease. There are symptoms with it that are unpleasant and uncomfortable to talk about, quite honestly. I presented with a lot of mouth sores, ulcerations that were quite painful, and they looked like lesions in my mouth, and they would open up and bleed, and I would have recurrences of these.
I mean, we're talking on your tongue, on your gums. In your cheeks, upper and lower gums and it just made it incredibly painful to eat. And my dad had that, and when I was a kid, I remember he used to use silver nitrate sticks, and we'd go to the dentist, and the dentist would just take a silver nitrate stick - if you can imagine putting that poison in your mouth today, right? He would just burn them off, and that brought such relief because these alterations would go away.
Unfortunately with Behçet's Disease, there are other ulcerations that can occur, such as in the genital area. So it's very difficult for kids to talk about that - if all of a sudden it hurts when they go to use the restroom - they don't want to tell a teacher or their parents. They don't even want to tell their doctor about it because they don't know what it is. It can be very frightening. Well, my daughter presented with those ulcerations, as opposed to having them in her mouth She would get a few mouth sores, but her main area where she was bothered was in the genital region, and none of our doctors believed that they knew what we had, and they kind of went, well, we can test these ulcers. Testing them means taking a sterile Q-tip and putting it in the painful ulceration to get a sample, and trying to take a child who was prepubescent, and not accustomed to having their doctor look in that particular area of their body, was humiliating for her. And it was very hard for me as her mom, even though I understood that they had to, as a process of exclusion, rather than going, Oh, we know what this is. First, they say, well, it's not—the X, Y, or Z. So they had to rule things out, and it was really hard to look at her and tell her this is for her own good when I knew it was very, very painful for her.
She also presented with joint pain, which is very, very common. I myself also have fibromyalgia, which is a kind of a pain syndrome throughout the body. So I understood when she said her fingers are really stiff. It would become very difficult for her to be able to write. She's a prolific writer and very gifted, but holding the pen would hurt after just a short period of time because of the inflammation that was going on within her joints. It’s one of the problems of Behçet's Disease. They tested, they kept saying, we don't know what this is. They would send off samples to various labs around the state, and everybody said, we don't know what this is.
They ended up putting her on steroids. She was on prednisone for a couple of months, which is not pleasant. It created anxiety and sleeplessness, and problems. That was just really uncomfortable for her. It was uncomfortable as her mom, just to watch that. And I knew that it was an immune system dysfunction. And I knew from my own research that the only thing that I could find besides vitamin D, which we found to be exceptionally low in her at that point, was the LDN.
The path that I wanted to at least try was LDN, knowing that there were little to no side effects with LDN,. I thought we really didn't have a lot to lose, and I did not like the idea of her being constantly on antibiotics because of course, if the doctor didn't know what it was, they kept throwing out steroids and antibiotics, and she kept having these problems, and I thought, she can't live like this. You just physically can't, your body can't take that. So I was able to find a friend of mine who is a paediatrician, and she specializes in functional medicine. And even then, it took me over two years of having my daughter go through these painful cycles of ulcerations before I could get that doctor whom I knew personally to write her a prescription for LDN. I had to just pretty much beg her. I said, look, I know you've written it for other kids because she also happens to work with a lot of kids on the autism spectrum, and I was trying to convince her, and this was before the book, so I was trying to convince her that, hey. I can't tell you exactly how it works, but I believe in my heart that this works on a really deep level of the immune system and allows the body to help itself.
And can we please try this? Because I can't keep watching my child deteriorate. And it was only after persistence. And I mean, I would show up at her office on a weekly basis, and I would say, you're going to keep seeing me until you at least let us try this. We got my daughter on it. She's been on it now just about a year, and it took probably about four months for her to find the full effect of it. It was so amazing that at about ten months into it, my daughter had not had any ulcerations anywhere. Her joint pain was gone. She was able to ride a bicycle and run and play and function as all of her friends.
She was feeling so good that she decided to go off of the LDN because she thought she was cured. Unfortunately, she didn't tell her mother had. I had no idea this was going on. About four weeks later, the ulcerations started again, and she didn't tell me right away, but waited a couple of weeks and then she came to me, and she said, something's wrong. It's come back. And I, at that point was confused, and said, wait a minute, you're taking your medicine, right? Oh yeah, I'm taking it, she said, so then I went to her room and counted the little capsules. And I found out she had stopped taking it, and I said, honey, you know, why did you stop taking it? And she said I thought I was cured because I felt normal. I felt like myself. I could do things like everybody else. And once that happened to her, that was a huge wake-up call. And so she has been on it and is back on it. And does not ever plan to go off of it again, because it allowed her to have a normal life and to not be looked at with that kind of pity book. You know, people mean well, but they give you this look that kind of goes, oh, I feel so sorry for you. And while that's kind, it's not helpful. It was tough getting the medicine for her, but now that she is on it, we are not going back, either one of us, because it has made that big of a difference in our lives, and it's so incredibly inexpensive. It's amazing. It's like a dollar a day for each of us, which is almost nothing compared to the quality of life that you can have.
I understand that not everybody is going to experience the same things, and for some people, it's going to take more time than others. And some people might not stay with it long enough to realize the full potential. But we were very blessed and very lucky that we were able to find out about it first of all, and that we were able to obtain it, and that it worked. And it worked really well. I think of it kind of like when somebody has braces on their teeth and their teeth are beautiful when they come off, but if you don't wear your retainer, your teeth will go right back. So I kind of likened LDN to wearing your retainer. If you don't take it, you can end up going back to the state in which you were prior to taking it. So we are very grateful to it.
Linda Elsegood: Well, that's wonderful. And you're, you're both in remission, correct; and how many years have you been taking it?
Denise: Currently, yes. It has been wonderful. I've been back on it now for almost two years. So I had gone a very long time without it. And those years were really difficult. It was almost worse than the years before I knew about it because I knew it could be helpful to me and I couldn't get it, as opposed to before when I didn't know that there was anything out there that could be helpful.
So even though it's only been a short time that I've been back on it, comparatively speaking, I have noticed a huge difference in the quality of my life. I don't take naps. I have fewer - you know, I'm only 45 - but I have fewer “senior moments”. I can tend to remember what I'm talking about and not get lost. You know, that brain fog where people kind of look at you and you have to stop and ask them, what did I just say?
For me, that's been really a good thing because nobody wants to listen to a practitioner or take advice from somebody who can't remember the sentence they said two sentences ago. So it's been a real godsend for my daughter and for me. I'm actually hoping to get my sister on it in the very near future. She does not live near us, so I can't get her to the same doctor where we go. But I'm giving her the information because she has recently been diagnosed with lupus, and I think that she too would be helped remarkably with LDN.
Linda Elsegood: Well, maybe we can interview your sister.
Denise: I hope so.
Linda Elsegood: Thank you for sharing your experience with this. We really do appreciate it.
Denise: Well, thank you for asking me, and thank you again for making this book available for opening our eyes to this; and for really giving fabulous science to it so that we're not walking around talking to doctors and having them look at us like we're nuts; that we can actually point to various chapters and things and say, look, read this. You know, it makes it so much easier to be able to obtain it when you can prove to somebody that it's real and it works, and it's not harmful. So thank you.
Linda Elsegood: Any questions or comments you may have, please Contact Us. 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.