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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.
Zoe - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: I'd like to introduce Zoe from England who has multiple sclerosis. Welcome, Zoe.
Zoe: Hello.
Linda Elsegood: Could you tell me when you first started to notice symptoms, and how old were you then?
Zoe: In 1993 I started getting numbness in my toes, but I wasn't diagnosed until 2001. I was 51 at that time, I was a very active person. When I first started getting symptoms, I used to compete successfully in orienteering triathlons. My children were still at secondary school and I was working part-time.
Linda Elsegood: At the time you were diagnosed, what were your symptoms
Zoe: I had optic neuritis and, or a long time I'd had problems with foot drop, then I was getting problems in my leg. I hadn't connected the two, but of course, when I saw a new neurologist, he realized and so I got the diagnosis.
Linda Elsegood: And how's the impact on your life being diagnosed with MS?
Zoe: Well, obviously I had to stop running my sporting activities. It just went downhill. I couldn't read a map, and I couldn't run, so orienteering wasn't possible, and it was really devastating to be told you have an incurable disease, which is only going to get progressively worse. You tend to go into deep despair, but I did have a very supportive family, and they just gave me enough space to come to terms with it. Which I suppose I did in my own way. I could still run a bit then, but it just became gradually worse over the years. I didn't have any very serious symptoms. The optic neuritis was just gradually getting worse.
Linda Elsegood: And how did you hear about LDN?
Zoe: Well, I read that in youth pathways, and I also joined the MS group and some people in that group were taking it. I think that was around about 2004 when I first heard about it.
Linda Elsegood: When did you first start taking it again?
Zoe: I didn't start taking it until 2010. I had tried before then; I had no luck getting LDN when I first wanted it, which was 2005. I got a load of information from new pathways. I sent it to my neurologist and to my GP. And when I discussed it with him, he just dismissed it. He said, Oh, that's just a placebo. You might just as well take all paper paste. So I said to him, well, what do you recommend? What can you do for me? He said, there's nothing I can do for you. He didn't have any alternative. I've never seen him since, so I asked my GP if she would prescribe it, but she said, Oh no, I can't go against what the neurologist said. So that was it really. I believe I could have gotten a prescription from the States or something, but I don't know. I just didn't go down that road. I tried lots of other remedies, with diets and various things. I tried antibiotics. They all helped to some extent, and I think that was the placebo effect.
Eventually my MS nurse said, what don't you see this neurologist, another man. And he said there was no harm in trying the LDN though he didn't encourage it. And by luck, my GP was having a baby and her replacement said you can try this, good idea. So I eventually started it in December last year.
Linda Elsegood: Did you notice any initial side effects?
Zoe: Yes, I did. I got a headache which lasted about a week. I felt very dizzy at first. The first day I felt dizzy and I didn't dare drive a car. The headache lasted about a week and then went off, but I also felt very sleepy. When I increased the dose, I could get the unpleasant dreams, which is sort of usual side effects, I believe.
Linda Elsegood: And how long did it take before you found that LDN was a benefit?
Zoe: It started being beneficial more or less about the first three weeks, I suppose.
Linda Elsegood: What benefits have you noticed being on LDN?
Zoe: My energy increased. I was up to do more. I don't get so tired, and what I really noticed after a couple of months, was that my concentration had really improved. I could think about things without getting muddled like I used to. I did a tax calculation, which I'd been putting off for months, and I found I could go out in the evenings and do things like that. I kept doing things I hadn't done before, not all at once. I mean, you know, and another day I washed the car, and I kept thinking, I haven't done that for a long time.
Linda Elsegood: If you were to score your quality of life on a rating of one to 10, 10 being the highest before you started LDN, what would it have been?
Zoe: Oh, four. I should think.
Linda Elsegood: What would you say to other people who are contemplating trying LDN
Zoe: I think they should go for it. Start as soon as you can, if you can get. If you can get it you might need to persevere to get through the initial discomfort. I would say the starting dose seems to be quite critical. I got it in a liquid form, and it was easy to adjust. So although I started at three milligrams, I reduced it quite soon to two milligrams and I found that I could cope with that better. So that's probably why some of those headaches and tiredness went. It's quite an easy thing to do, and you just need to persevere.
Linda Elsegood: Well, thank you very much for sharing the story with us.
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.
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.