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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.