Linda Elsegood: Today I'm joined by Jeanette from New Zealand who's been taking LDN for Myasthenia Gravis for quite a few years now, haven’t you Jeanette,
Jeannette: Yes that's correct. Just nearly three years now.
Linda Elsegood: Wow. And we have interviewed you before, so it's really good to catch up with you. So when were you diagnosed?
Jeannette: 20 years ago.
Linda Elsegood: and just to refresh everybody, if they haven't heard your last interview, what was your condition like before you started LDN? What was an average day for you like?
Jeannette: Well, I'd get up, I'd usually wake up about nine o'clock feeling very, you know, feeling like I hadn't had a great sleep. Um, so I sort of got up and did a few hours work in by probably half-past eleven I'd feel quite tired. And, uh, my ability to think and in, uh, my cognitive functions were certainly, as I can say, confused, you know, it wasn't clear. And, and usually, um, in the afternoon, I would have a sleep or I, because I'd start to feel very fatigued some days, not every day, but I'd certainly was feeling fatigued, and I'd normally have a sleep, uh, in the afternoon from about one o'clock till three.
And then I'd get up and do a few more hours work, and then, uh, by half-past nine, I would start to be able to feel very, very fatigued again. So I would probably be in bed by half-past 10. And it would take me a long time to try and fall asleep. So that was my average day. It was just a cycle of fatigue catching up.
Um, very bad brain fog all the time, my clarity of thinking was probably about 50% and, and you know, any virus I got prior to the LDN, it would take me longer to recover. All right? So normally you get a cold that lasts seven days. People with Myasthenia Gravis take a lot longer, right, to recover from a virus. And I would usually have to be bedridden with it, if I got a small cold because the biggest thing was with my Myasthenia Gravis as fatigue, you know, the fatigability. Yeah. And prior to taking LDN, I couldn't actually exercise. So if I did, if I used to go for a walk, it would take me two or three days to recover.
Um. And, and that, that was a struggle because I used, prior to my diagnosis, I was very active. I love getting out walking and you know, swimming and things like that and I just couldn't do it, you know, with, with the Myasthenia Gravis and work at the same time from taking LDN three years ago, that has all changed, probably about six months into taking the LDN I started exercising again. And I can go to the gym virtually every day and do 40 minutes a day. There is no downtime. It's just normal. All right. For people. I can take a 10K walk now, which I couldn't before, and I don't have any downtime. Something like that would virtually kill me before the LDN, it would take me days to recover from it, and I don't do that anymore.
Linda Elsegood: How easy was it to get a prescription for LDN?
Jeannette: Well, I'm very lucky cause I've got a doctor who's into alternative medicine, so he's a very holistic physician, so he had no trouble prescribing the medication for me, and he's just absolutely delighted with my results. Uh, because it's just, you know, it's, it's from being very limited to what I could do now I'm working since taking LDN three years ago. I'm working 40 to 50 hours a week. I don't all the time. Um, I exercise three to four times a week. Um, if I don't exercise, I have a, uh, a gym program. Um, I, I walk once or twice a week and there is no fatigue with it. I'm awake at seven o'clock, and I can stay awake till half past 11 at night without feeling tired.
But I think the biggest benefit I've got from the LDN is my clarity of thinking is just so improved because, my role - I'm an ACC advisor, and I actually have to go to review hearings. Legal review hearings, which can take up to an hour. Alright. Or I take matters to the district court. So again, sometimes, particularly at the district court, I would have three or four hearings a day.
Now, prior to LDN that was a real struggle for me to do that. To remember, particularly in the afternoon, to try and remember what I was going to say, because you're standing there, in a courtroom, some of the judges would sit there and look at me and think, well, what's she on? Or is she drunk or whatever because I'd start slurring my words and I'd start to get very tired, and I would stumble. Whereas now, taking the LDN that is not an issue anymore. My clarity of thinking is very, very sharp. And because when you and the district court or at a review hearing, you've got, you know, a judge or adjudicator sitting there asking you questions, you've got to have very, very clear in your thinking and be able to respond in a legal manner. So prior to LDN three years ago, I really struggled with it, and I couldn't do more than two hearings in a day. Whereas now where I can, I've done three to five hearings in a day with no trouble. No, I'm certainly resting the next day cause my throat would be a bit sore.
But other than that, it was just fantastic. That's it. Is this, you know, I consider myself probably 95% normal.
Linda Elsegood: Wow that's amazing, isn't it? Did you have any introductory side effects when you first started?
Jeannette: Well, I think I've got a little fluttery, I struggled to sleep a little bit. I know it was the first six weeks.
I did really struggle with feeling, um, hyped up. Um, I did struggle to sleep a bit. So what I did, I changed my regime. Then I started taking them in the morning and then slowly over time as my body got used to the LDN, and I shifted it over the day. So I started taking it lunchtime, afternoon and then tea time and then, uh, you know, just before I get into bed now.
Linda Elsegood: And do you take capsules?
Jeannette: No, I, I compound my own because it's the cheapest way to do it in New Zealand. So my doctor prescribed that, uh, 30 tablets. It's, um, 30, uh, I think it's 50ml. And then I cut ...
Linda Elsegood: Can I, can I stop you there? Because we're not going to be able to use this bit because it's not best practice. So that's not something that we can promote, so we'll have to cut that bit out.
Linda Elsegood: So just carry on with your story.
Jeannette: Yeah. So it's been very, it's been fantastic. And, um, you know, from being very, very limited in what I can do. Like, you know, I, I'm thinking of, you know, going over, I've received next year and, um, which is a lot of travelling and usually a lot of walking and that would have been an absolute, um, I just wouldn't be able to do it previously without the LDN.
Because you just don't, you don't have the fatigue. Um, and, and what people don't realize, particularly with any autoimmune disorder, there's fatigue and just even talking to people, um, socializing, you know, with MS or the Myasthenia Gravis or any autoimmune disorder, try to just talk to people, It's just very tiring.
And, and I don't, I don't have that problem anymore. And it's just fitting, you know, I can't say, um, that, uh, you know, I could sit there and talk to him for hours now without getting tired and, and without the sort of feeling, Oh, you know, before they, I used to have to say to my friends or family, look, I'm sorry I can't talk anymore. I'm too tired, and I can't think, so I'm going to have to go home. And cause people are very understanding. It's like you're rude.
Linda Elsegood: Let me say. Well, and you have done so remarkably well. I mean, so, well, I should think people find it hard to believe you've actually got something wrong with you, don't they?
Jeannette: Well, they do now. Yeah, definitely. Yeah. Because it's just, you know, I know if I've got a virus, a really bad virus, it would still knock me, but my recovery time would be so much better, and I wouldn't get it as bad as what I used to. You know, I, you know, I remember once that I got, um, a bladder infection and I, at that stage, my doctor because it would knock it on the head, he gave me, um, antibiotics that they give for people who've got gonorrhoea, and because they had to give me such a strong medication because of my autoimmune disorder. Now, from the time that I've started taking LDN, I've had no bladder infections whatsoever.
Linda Elsegood: Yeah.
Jeannette: They've just disappeared. I used to get them regularly because you know, everything in your system is compromised. Um, so I, I don't have, you know, I, I can't remember the last time I took any antibiotics, but I used to be regularly on them. You know, it would be for taking LDN. And so, you know, and I feel that I can reduce my tablets as well, so I don't need as much.
Um, I was taking Tegretol for pain cause I had a whiplash injury as well—six weeks into taking the LDN my pain just disappeared. And I haven't really had the neck pain that I suffered at that time, which I suffered seven years previously. So it just, I woke up one morning and I thought, Oh, I haven't got a sore neck, you know, this is, this was so strange, and it wasn't there anymore, and I haven't really taken any strong painkillers either for the last three years because of the LDN. And there's been a few times that I've forgotten cause I've gone away for five days.
And you know, people say, Oh, it's probably just a placebo effect, but you know, there have been a few days that I've gone away and I’ve forgotten to take my LDN with me. And by the third day, I can tell you I was starting to struggle with pain and everything was starting to come back, you know? So it shows it's not just a placebo effect, it works very well. I think it works really, really well with autoimmune disorders.
Linda Elsegood: Well, thank you very much, thank you so much for sharing your story with us today, and we'll try and catch up with you again another time.
Jeannette: Okay. Thank you, Linda.
Linda Elsegood: Okay, thank you.
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Any questions or comments you may have. Please email me 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.