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Summary:
Ellen is from the United States and takes LDN for lupus, Sjogren’s, Hashimoto's and interstitial cystitis, and for pain. She is in her 70s, and began with autoimmune issues at 24. When she started LDN, she quickly had this overall feeling of feeling good, and was able to increase her activity levels greatly.
Full edited text:
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.
Today I'd like to introduce Ellen from the United States, who uses LDN for multiple conditions. Thank you for joining us today, Ellen
Ellen: You're welcome. Thanks for interviewing me.
Linda Elsegood: Could you tell us what it is you take LDN for
Ellen: I take LDN for autoimmune diseases. I have lupus, Sjogren’s, Hashimoto's and interstitial cystitis. But, I was hoping to take it to get rid of pain
Linda Elsegood: Right. When did these conditions start? How long have you had them?
Ellen: I got Hashimoto's when I was 24 years old, and interstitial cystitis in my 30s, and I think I might have had lupus in my 40s, but I don't know, you know, people would say, why is your face… So I think it was the butterfly rash. I was tired all the time. I had pain all the time. I just thought that's what everybody lived with. Then the <rainy> started in my late 30s and early 40s, and we moved away from this small town in north-central Pennsylvania, and I moved to Savannah, Georgia, and I began to play tennis every day for hours, and I didn't use any sunblock, and all of a sudden, my head, this terrible rash itching, and then I got really tired. I was diagnosed with lupus actually at age 61. Then, in my 40s, I got ulcers on my cornea from dry eyes, but nobody picked up on that, and so recently, my eye doctor said I had Sjogren's, and I had another rheumatologist say yes, you have Sjogren's. So it's just like, everything kind of, just every decade, it’s something new.
Linda Elsegood: What did the medical professionals do to help you cope with what you were experiencing?
Ellen: Oh, nothing, because I don't think I told anybody, because they thought I was normal. This was normal. I know I had two young children 21, 20 months apart, and my husband was a lot older, so I did everything, and it was very stressful, the Hashimoto’s. I think I know that my aunt and two uncles had Hashimoto's, so that was sort of, I guess inherited. I'm not sure if you can say that. But the other things that came on, I think it was I had very high-stress in my 30s, in my 40s, and my 50s, and then when my husband died, I don't know. It was kind of a relief, but he was older, and he was kind of stressful. An interesting thing is that I moved to Savannah, Georgia, when I met my third, but I was never too sure.
So, what LDN has done for me: the very first time I took it, I just had this overall feeling of feeling good. I felt positive. I felt like I could do the laundry, I could cook dinner, I could swim, I could play tennis. Yeah, it was just wonderful, how easy was it to get a prescription. Well, I thought it was easy. Even though I was in my 60s - a lot of people aren't familiar with the internet and stuff - I just went on the internet. I looked at your webpage, and I found how to find a doctor, and I arranged an interview and paid my hundred dollars, and he prescribed it for me. It was real easy.
Linda Elsegood: And how long ago was that?
Ellen: the only time I had side effects is when I went up to six milligrams. I thought if I took a larger amount, maybe the pain would be less, but I kind of had hot flashes. I was really hot and sweat profusely, and then I would get real cold, so I went back down to three. Now three seems to be okay.
Linda Elsegood: And what are your pain levels like on three?
Ellen: Well, my pain is not too bad, but I think it's some other things that I'm taking. I am not really sure if yes, low dose naltexone is reducing the pain, but I feel good on it so I just keep taking it. Yes, I feel good. I feel good,
Linda Elsegood: If you were to rate your quality of life prior to starting LDN, what would it have been?
Ellen: My quality of life was pretty low. I didn't feel well. I was so tired and just lethargic, and I just kind of did a lot of sitting around, and all of a sudden, I took it, and it was RESULT. I feel good. I think the release of the endorphins just makes you feel better. It could be, I just don't know, but I don't have a lot of pain right now. I don't, so it's good. It's good. It could be the LDN, it could be, yeah.
Linda Elsegood: Do you have any thyroid problems, and what about the cystitis, is that under control?
Ellen: I cope with it; I don't notice it during the daytime. When I go to bed at night, I have pain; I take two muscle relaxers at night and the low dose naltexone, and it's not excruciating pain. I'm so used to it. I just sort of go okay, take a deep breath. It's just a nuisance, basically. I did have treatment for that at one time, and I'm thinking about doing that again, but for now I’m just trying to ignore it, and to be frank with you, I eat too much citrus things, and that's a real irritant. If I would cut down on that, it would be better. Coffee isn't good even for bladder, and I love my coffee. I'm just going to be 73 in August, and I just don't want to do certain things. I just want to live my life, and I'll put up with the pain. But I told you, I play golf and I play tennis, and I swim on the swim team, so to speak - I go to swim, me! So yeah, I'm doing okay lady!
Linda Elsegood: What about the dry eyes? How are you coping with that?
Ellen: That is really amazing. I have been doing my drops twice a day now, and if I do that, I seem to be doing well. I also have a prescription in the refrigerator from my eye doctor, with the prednisone drop, so if my eyes flare up, I'll use the drops, and the eye doctor is okay with that. She will check the pressure in my eyes to make sure it's okay, but the dry eye can be really bad. And then the dry mouth is a nightmare, which is… So, I have a lot of things that could make people depressed ,but I guess I've just sort of gotten used to it, and I just get up every day, and I try to do everything I can do and try not to overdo it.
But today, I did. I went to my garden, and I stayed too long. I am in bed.
Linda Elsegood: I hope you recuperate quickly. I mean, we, it's something I think we all tend to do when you feel good. You want to do as much as you can while you feel good, and then you have to pay it back with interest. Do you manage to bounce back quickly? I mean, would the next day, like tomorrow, be okay or would you still be really fatigued?
Ellen: Well, I was so bad when I got home. We decided to take another five milligrams of low dose naltrexone in the hopes of keeping a square away, so I did that. And I won't be on that one, but I take five milligrams, I took an extra one.
Linda Elsegood: Thank you for sharing your story with us today. I hope you get enough rest today to feel fighting fit tomorrow.
Any questions or comments you may have, please email me, Linda, 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.
Ellen takes LDN for Lupus, Sjogren’s, Hashimoto's and interstitial cystitis, and for pain. She is in her 70s, and began with autoimmune issues at 24. When she started LDN, she quickly had this overall feeling of feeling good, and was able to increase her activity levels greatly.