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Linda Elsegood: I'd like to introduce Darlene from the United States who takes LDN. Thank you for joining me, Darlene.
Darlene: I had lupus for many years and started back when I was raising my young children, and I felt fatigued and feel all the time. So I found the LDN.
Linda Elsegood: Before we start Darlene, what are the conditions do you have?
What autoimmune conditions that you use LDN for?
Darlene: Well, I use it for Myasthenia Gravis also, another autoimmune disease.
Linda Elsegood: And do you said about Raynaud's syndrome?
Darlene: I couldn't take it for that. I haven't really seen any results from that.
Linda Elsegood: And do you have IBS as well. Is that right?
Darlene: Yes. They said I would need a lower dose for that, but I've tried the lower dose, and it helps the IBS. I don't get the benefit for Lupus.
Linda Elsegood: Ok. So how old were you when you had the Lupus?
Darlene: It started when I was about 29 years old.
Linda Elsegood: And what symptoms did you have at that time?
Darlene: Just feeling ill and weak like you had the flu or fever but didn't run a fever.
Linda Elsegood: That must've been very difficult with young children.
Darlene: Oh, it was terrible.
And I would go to the doctor, and he couldn't find anything wrong with me. "Oh, you're just feeling bad." Everybody would try to blame it on nerves, depression and it took ten years for them to find a diagnosis.
Linda Elsegood: And what were you offered once you had your diagnosis?
Darlene: They said it was Lupus, Systemic Lupus and put me on the Prednisone and all different drugs,
which didn't really help or do any good for me.
Linda Elsegood: And how long were you before you had these other autoimmune conditions?
Darlene: So my opinion? It was about 20 years then I had Lupus.
So I really didn't respond to anything else.
Linda Elsegood: And how many years was it from first being ill to having heard about LDN? How many years in between?
Darlene: Oh, I didn't hear about LDN until 2009, and I started with Lupus in 1989 when I was diagnosed. So that would be 20 years.
Linda Elsegood: So in those 20 years, what was your health like just before you found LDN?
Darlene: If I planned anything, I would get sick, and my family thought I was just sick all the time, but I would feel well some days, and then other days I'd feel sick.
So every time we'd plan something, we'd have to cancel because I'd get a flare of the Lupus. And I didn't feel well. So we had to cancel our plan. I went around like that, just raising my kids and living that way for 20 years.
Linda Elsegood: And what would you say your quality of life was like at that point with ten being the best?
Darlene: Probably two or three. And then when I got the Myasthenia Gravis, it got even worse. The weakness was worse. I had some days where I couldn't get out of bed. I couldn't walk. I had to use a wheelchair. Couldn't walk distances at all. And some days I would crawl to the bathroom from the bed would be so weak I couldn't lift up a fork to eat.
And that was also in Myasthenia Gravis when that came. So then I had two diseases. I did get the thymus removed for the Myasthenia Gravis because I ended up getting a fibroid cancer to make a long story short. They said they would remove the thymus then along with the fibroid because I had wanted to find this out because they say you improve and it helped them somewhat, but not a whole lot.
Then after that, I still had flares of Lupus and the MG, whatever it was because they just called it the lupus syndrome because I didn't know which one it was bothering me. I tried to treat Lupus with all the lupus medicines and none of them worked for me. None of them helped. Then one day I got an email about the LDN and so I thought: "Wow, check it out."
So I started looking on the web and saw that people were really getting well with MS. And there were a couple of Lupus patients on there. So I said, "Well, why not? I haven't got anything to lose. Try it."
Linda Elsegood: How easy was it to get the prescription?
Darlene: Well, it wasn't too bad. I talked to Crystal on the internet to find a doctor in my area.
And of course, my Rheumatologists didn't know anything about it, but I went to the doctor in my area. He was a regular internist, and he gave me the prescription right away.
Linda Elsegood: And when you first started, did you notice any introductory side effects?
Darlene: I noticed no side effects at all for me, but I did notice a great difference in my energy.
I was helping to move my mother. She was moving, and I had lifted boxes and all that. And everyone thought I'd be fit because, with Lupus, you can't do that. And you'll pay the next day, I guess, just like MS. And the next day I wasn't sick. I kept feeling good and kept helping her pack and lift boxes the whole week.
I never got sick. I just felt more energy. It was great, like a miracle overnight for me.
Linda Elsegood: Wow. So how long has he been taking LDN now?
Darlene: I've been taking since 2009. So about five years.
Linda Elsegood: Amazing! So how long did LDN continue to improve your condition?
Darlene: Well, it just kept working, and I haven't had any flares for the six years.
I even went through a lot of stress with my son because he had leukaemia and was hospitalized since his treatments. It was very stressful, but he came through it, and I came through it without any medicine taking it.
Linda Elsegood: And what would you say your quality of life is like now on that score scale of one to 10, 10 being the highest?
Darlene: Mines at 10. I'm like the difference between night and day. My whole family tells me that. I am a different person because I've been doing things I've never done before. I'm able to do the things a normal person does and I am so thankful for that.
Linda Elsegood: Well, amazing testimony, isn't it?
Darlene: And that's just one email sent to me really changed my whole life to get that drug.
Linda Elsegood: So, what would you say to other people who are thinking about trying LDN, but maybe are a bit sceptical?
Darlene: Well, I can't guarantee it works for everyone. I have heard some people say it didn't work for them, but I don't know the situation or if they tried it long enough or any of the particulars. If I can say it's worth a try because it has little side effects and it doesn't hurt to try it. If you're as sick as I was, you have to try something. I couldn't go on like that.
Linda Elsegood: Well, that's one amazing story! Thank you very much for sharing with us Darlene!
Any questions or comments you may 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!