Deena - Canada: Update on her UCTD (Undifferentiated Connective Tissue Disease), Chronic HSV2/Shingles, Chronic Pain, IBS, Histamine Intolerance, Vestibular Migraine, and Insomnia (LDN; low dose naltrexone)
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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.
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Deena - Canada: UCTD, Chronic HSV2/Shingles, Chronic Pain, IBS, Histamine Intolerance, Vestibular Migraine, Insomnia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Deena from Canada has suffered from Lupus and a very weak autoimmune system for years. Various doctors mis-diagnosed her conditions, and finally she found out the truth. Through research, she learned about Low Dose Naltrexone (LDN) through Linda Elsegood’s books on LDN. She has had remarkable improvements in only 3 months and is so thankful to the ldnresearchtrust.org. She recommends this drug to anyone with autoimmune conditions. Listen to the delight in her voice during this interview with Linda.
Review by ken Bruce
Terry - US: Lupus, Chronic Fatigue, Irritable Bowel, Anti-Aging (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Unable to accept her diagnosis of Lupus, while also suffering from chronic fatigue, irritable bowel, digestive issues, brain fog, muscle issues, body temperature issues, Terry did her research and became interested in nutrition, anti-aging, and healthy living in general. After talking to many people, including scientists, she was interested in all modalities of healing and wellness opportunities.
Terry was introduced to Low Dose Naltexone (LDN) and immediately felt a difference in the function of her brain. Terry is 65 and feels she is now able to do a lot of things that others her age can’t do. She says that when she took the LDN, it gave her a definite boost to her brain. Terry now exercises and has the energy to do things that she otherwise would not be able to do. Terry says that Low dose naltrexone definitely contributes to her feelings of wellness and energy.
For more interviews with people whose lives have benefited from LDN please visit https://ldnresearchtrust.org/ldn-videos
Sheila - US: Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Sheila is a nurse. Her symptoms began in 2010 and included generalized pain, crying, and fatigue/no energy. When her neurologist diagnosed her fibromyalgia, she rated her quality of life as 3 on a 10-point scale. She also takes amitriptyline for migraine. She was seeing a doctor who balances hormones who finally suggested Sheila try low dose naltrexone (LDN). At first it interfered with her sleep so she continued taking melatonin, Benadryl, or Xanax to help fall asleep; but she quickly noticed improved mood. After 2 months at 1.5 mg fatigue returned, so her doctor increased her to 3 mg for a month without improvement, then to 4.5 mg. Vivid dreams were a problem, but she takes LDN in the morning and is doing well. She rates her quality of life now as 9 on a 10-point scale. Her sister also has fibromyalgia and is starting LDN. Her sister’s husband has an autoimmune disease - inclusion body myositis – and started LDN and his mood is improved and he’s energetic. Her niece has lupus and will start LDN soon. Sheila recommends LDN to anyone with fibromyalgia, MS, or any autoimmune disease.
Keywords: pain, crying, fatigue, fibromyalgia, autoimmune, inclusion body myositis, lupus, MS, LDN, low dose naltrexone
Summary of Sheila’s interview, please listen to the video for the full story. Any questions or comments you may have, please Contact Us. I look forward to hearing from you.
Sandra - US: Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, NASH (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Sandra takes Low Dose Naltrexone (LDN) for Lupus, Rheumatoid Arthritis, Sjogren's Syndrome and Nonalcoholic Steatohepatitis (NASH). Sandra noticed the onset of symptoms in 1999 with tingling in her toes, a butterfly rash on her cheeks and severe memory loss and confusion. Then came bone pain, dry eyes and mouth, incontinence, weakness and muscle spasms. Sandra was given traditional treatments like methotrexate, muscle relaxants and prednisone and felt that none of it worked more than maybe 50%.
In 2009, after a lot of research and trying to find a prescriber, she finally got her prescription for Low Dose Naltrexone (LDN). Remarkably within 24 hours of taking it, with no adverse side effects at all, the majority of Sandra’s symptoms faded away, the joint and bone pain took a little longer but eventually, all of her symptoms went and she felt that she had her life back.
For more personal experiences and medical professional presentations please visit
Sally - England: Breast Cancer, Lupus (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Sally from England tells her story of breast cancer and lupus. Sally was diagnosed with Lupus when she was just 17 years old, she is now 49. Her breast cancer was diagnosed when she was 48. Sally has been treated with radiotherapy and chemotherapy while taking Low Dose Naltrexone (LDN) and although she couldn’t say definitively what made the difference, or all, she feels so much better, no longer has Lupus symptoms and her cancer is much reduced. At present Sally takes only LDN and supplements and remains well.