Linda Elsegood: Today my guest is Diane from the United States who uses LDN for Lyme disease.Thank you for joining us today, Diane.
Dianne: Thank you, Linda, thanks for having me.
Linda Elsegood: First of all, can you tell us what it was like before you had been diagnosed; did you see a bullseye rash? What actually happened to you?
Dianne: I did not get a bullseye rash. I did have an unusual rash. Basically, in 1989 I went camping, and I came home, and I could not get out of bed.
And that was the beginning of this journey. I didn’t know what it was; I had to take a year off from school. I was finishing my masters at the time, and I was playing in a band. I was in a country-rock band and had a job with my professor, very active, and it just came all to a halt. So, I quit everything, and I didn’t really get help from the doctors.
I had to figure it out myself. And basically other women friends helped me with nutrition and supplements. I kind of got back on my feet, but I was never the same after that. I worked for ten more years full time.
Linda Elsegood: You said that you never really got over it, back to where you were before. Can you explain at that particular time what it was like living with Lyme disease? What were your symptoms? Why didn't you feel as good as before, even with all the nutritional supplements and things?
Dianne: I had severe fatigue. I had a hard time doing daily living, activities of daily living. And then I got a lot of allergies so that I was just allergic to everything. And the trendy thing then was candida, and so I went to an allergist and he started treating me for candida, which means a strict diet.
For a year I went to a naturopath, and my whole life was just getting better.
I had to quit my band. I was never played again professionally in the kind of band where you have contracts to pay for it? I'm a percussionist, so it's pretty physical. And that was huge; I think that's one of the biggest losses of my life, actually not having that band anymore. And socially, it's kind of isolating. People don't know what to make of you. So then after maybe six, eight, ten months, I went down to halftime, and I did finish my degree. After a year, I went back and finished my degree. I didn't have the power that I used to have. So, I probably lost 40% of my, in my professionalism in my ability to perform. But you know I got by, that's what you do, you just got by. So, for the next ten years, I did work full time. I also did get in a relationship. It wasn't very best one, but, yea so that, that got me through the 90s.
And, I was working like a kind of like a social worker, I was a DVR counsellor and a job coach for people with disabilities. So, I could kind of bank my hours, so I could figure out how I could get through the day. But I drank a lot of coffee, a lot, but I didn’t know what was the matter with me, I figured that I would eventually I’m going to figure it out, that I would eventually get better, but I did not, I regret.
Linda Elsegood: Did you know it was Lyme disease at the time? Did you suspect it was Lyme disease?
Dianne: Well, initially I suspected it, back in 1990, I went to a doctor and they said no, you don’t have a bull’s eye, I’ll give you a week of tetracycline, I think, and it didn’t help. It didn’t help at all. Yeah, so I mean, I think that’s the hardest part, not knowing what is the matter with you.
Linda Elsegood: Yes, So were you still visiting your doctor or had you given up seeing them?
Dianne: I saw a really good allergist, George Croker from Wisconsin. And he diagnosed me with chemical sensitivities, and he hung in there with me. I think my insurance paid for a little bit of it, I got to quit and work part-time again. And then I got worse, my relationship broke up, and then I was homeless when I was sick.
So, I was sick and homeless together. And there are all kinds of things that happen. Socially, people don't know if you're the problem, or if my pain was my problem with my family's problem, or my family doesn't know if I'm the problem. My mom always said, how come you can't get through this? You know, I had a daughter with seven kids, and she can get through this, but why, why can't you get through this? Do you know?
Linda Elsegood: How did you manage to get through this?
Dianne: I, I really have this Irish kind of fight in me. If somebody tries to take something away from me, no, I just fight; and that's what this disease did. I just kept fighting, and to be honest with you. I don't know how I got through it. I just wasn't ready to die
Linda Elsegood: And how did you hear about LDN?
Dianne: I don't know. I just wanted to get my life back.
Sorry about that. It's kind of hard to talk about.
Linda Elsegood: Oh, totally understandable. You'll be surprised at how many interviews I've given and have cried.
Dianne: Yeah, right. Well, I wish that my parents knew, but they died. And so we never knew. So I suppose now I I know, but it would've been nice to know what I was dealing with. You know, to know that I had a disease that kills people. The fact that I see life was kind of awesome actually. That was, I wasn't really living, but I wasn't dying, you know?
Linda Elsegood: How did you hear about LDN? When did that start?
Dianne: About LDN? Well, I heard about it from a lot of support groups. And it, and they said, we came in, and so I got it.???? I want some women's international pharmacy, you know, saying like it's praising. So I went to my doctor.
I have a really excellent doctor.
So anyway, I went on like 1.5. And it did nothing for me. I couldn't even walk with it, it was way off, the dose was wrong. And so than a year later I just figured, well, I can't do this. Do you know? I know everybody likes it, but it's not for me. So I'm often a year, someone from my support group said, you know, he got, he got his LDN from a regular mainstream doctor, who put him too high, I dosage and he serious and Somnia.???? So he, he says, go to this, you know, go to this seminar with me. And I did. Um, that was the, you know, that was, that's not a Creek, and it was hallways security. Um, they had an educator who really said, you know, more is not always better. Less is often better.
He really taught us about dosage. So, um, so I went all the way down to 0.5, and then it was like, Oh my God, I got some energy here. I remember my friend was moving and he, um, needed help with wood. He had a wood farm, and he needed help pet, you know, washing it with, stacking it and getting it ready for sale.
And there was even a gas motor going and all of a sudden I. I was able to work. I was able to work. It was just, wow, I can do this. Do you know? And a couple of my friends are like, are you working? Really? Are you working? You know, like, I thought you would've been gone by now. So that was just really nice. That was at 0.5.
And I, I did it for like three months, and then I had severe pain. I couldn't walk. My joints were really hurting. And, uh, I talked to David at Hoey apothecary, and they were, so what are you for a filler here? And they said it was Avacel, and it was supposed to be inert.
I thought that's not right for me. So I went back to women's international pharmacy. The only filler they use is olive oil, which is, it's always been right for me. So, so I switched. Fillers stayed at 0.5 and I. It was really nice. It was really nice cause the pain went away, the energy stayed. And I just was so. Happy that I could like to go out. I'm a, I'm a musician, so I, I love to go to hear bands and festivals and dance, and I was able to do that. So, It was a big deal for me. You know, it's been years, so that, that was a game-changer. And, I think I stayed at 0.5, you know, and I had lots of dreams. I enjoyed Low Dose Naltrexone because you get all these vivid dreams It's just like a movie, you know because of your body's adjusting to it. And, I just loved it. I loved it. It really helped me. And then eventually I went up to 1.0 and, I, I knew I wasn't myself, so you don't really like that. So I knew I was at my full potential, but at least I could be more active, which is kind of who I am.
And then after a year, I went to 1.5. Yeah. That would be a year ago, January 2019. I went to 1.5, and I decided to work out more. So just that time I couldn't be losing weight and going down in size. And, and that's hard too because when you get rid of Lyme debris or lime, what goes up lime? It, it's hard on your body too, actually release it.
So, I think by mid-summer, I went to 2.0 yeah. The last one that I went to 2.0 right, well then, then I went up to 2.5 recently, and I think that's too high because. I think it's making me detox faster than my body can tolerate. So I'm going to go back to 2.0.
It push pushes yeast or candida or fungal. It just pushes it out of your body. It's like it kills it, or I don't know if it kills it or just pushes it out, but the detox thing is really big. You really got to detox. Aggressively, if you have Lymes and you're getting rid of the bugs, basically the and what's really got to detox.
Linda Elsegood: what's your diet like now, Diane?
Linda Elsegood: Did you eliminate any foods in your diet?
Dianne: Yeah. It's kind of limited. I have coffee, rice cakes and almond butter for breakfast, and the rest of the day is either salad or soup. I don't eat grains. I did have rice cakes, but I don't need to have the grains. So it's mostly protein and vegetables.
I love fruits, but I've cut that out too. I eat apples sometimes. It's mostly vegetables and protein: red meat, turkey, salmon, white fish, and tuna fish. I have aches every couple of days. Well, when I go out to eat, it's usually salad or soup, or more like Asian food: vegetables and meat. Really, and I put the rice on the side.
I don't eat much rice anymore, but I do eat some. But, the best thing is fruits or vegetables and meat for me. Lots of water serves I take like grapefruit seed extract and hot sauce and minerals, lots of minerals, B vitamins. I have this detached, a green smoothie mix called detox detect. It's great. So what would I say; that I'm kind of a boring eater.
Linda Elsegood: What would you say your life is like now in comparison to what it was like before LDN?
Dianne: Well, at least I can live. You know, before, when tried LDN the first time, or before LDN, I really could not live my life. I was like, how am I going to get through this day? How am I going to get to tomorrow? And I was heavier. I gained like 50 pounds. I went from 150 to 220 or something like that. I had lots of pain. you know, and I always tried to make the best of the day, but yeah, it was reduced. It was reduced to like, the people that I hung out with were like 20 years older than me, 30 or 40 years on me. That's what my level of energy was.
So I think the best, most wonderful thing with LDN was getting more energy. Even though I'm still tired you get your energy back so that you can maybe be at 75% instead of 50% you know.
Linda Elsegood: So what about pain levels now?
Dianne: Well, it comes and goes. Sometimes. It's a 10 like it was yesterday morning. I was like a ten, and then in the afternoon, I went swimming. I swim a lot. I would like to swim five days a week, I didn't have any pain. I don't have any pain today. So, with Lyme, whatever you're trying to get rid of breaks down, and it really is severe pain, and then when you get rid of it, then you kind of come back to life again. That's the cycle I'm on. When I'm in pain, moh brother, I just like walk it off. I just keep walking, until I can move again, you know? Because if I don't, I don't get better. And I know you can't always walk, and everybody can't always walk, so then I swim, in order to move it out of my body.
Linda Elsegood: Well, we're now at the end of the show, Diane, what would you say to other listeners who have Lyme disease, who are thinking about trying LDN? What would your message to them be?
Dianne: Number one; don't go with the standard dosage. If you have Lyme, start at 0.5 or even less than that, and don't use Avista or any filler that's not biodegradable because Lyme people have so many reactions.
Stay with something like olive oil, which works for me. Some people use ginger, some people use rice flour.
I created my own ideas, and I went to 0.5 with olive oil. And I started coming back again. So, and a lot of times people are so confused, and they're on the websites because the doctor said, start at 3.0 I probably, every time I'm on the website at least three times, right? I tell them to start 0.5 with bio-degradable fillers.
The pharmacists don't get it. The doctors don't get it. So I'm really grateful to you, Linda because you get it. You know.
Linda Elsegood: Well, I have to say thank you so much, Diane, for sharing your experiences today. It's very inspirational for other people.
Dianne: You're so welcome.
Linda Elsegood: Okay. You take care. Thank you.
Dianne: Thank you.
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