LDN Video Interviews and Presentations

LDN Research Trust on Vimeo.

I am Chris from Taiwan and I have Sjogren's Syndrome.

Sjogren is a disorder of the immune system, often defined by two most common symptoms, like dry eyes and dry mouth which is exactly what I have. I was diagnosed when I was 42.

I was very healthy, and led a very active family life. I loved travelling. When I came down with this disease, it just made my life very difficult. It made simple tasks, very difficult because the eyes were just burning painful every single day. I used to walk in big shopping malls with an ice pack over my eyes because I just couldn't keep it open. And I couldn't travel. It was very difficult to travel by air, especially with cabin air and being in a very tropical climate.

I was very scared because I didn't know much about this disease and I couldn't find any help anywhere so  I became very depressed.

I went to see doctors, and they just told me that I had an excessive dried eye than normal and gave me eye drops. I knew something was wrong but I just couldn't pinpoint it.

After 9 months I made an appointment to see my rheumatologist and he confirmed the likelihood that I have Sjogren's.

I started also having other symptoms like pins and needles sensations in my upper body, heat or this burning sensation in my upper torso, which I couldn't explain.

I started to have little jerks and little spasms in my legs.

I even joined the Sjogren's World Society and  those discussions just frightened me more because I saw people taking Plaquenil, but still, everybody's disease we're still progressing. And the worst of all is that people seem to be getting more autoimmune disease one after another. So I just didn't believe that is the right course for me. And that's why I started searching and finally, came up with something that seems to share some light and that gave me hope and which was the LDN.

I met two patients who have Sjögren's like me in this United States through the internet.

I went on the net, and I bought my medication through the internet pharmacy.

I started taking it a November 27th of 2007. So it's over three and a half years now.

I remember clearly I had an unusual rash that afterwards I realized it was some kind of an yeast infection.

I immediately saw results in about eight days. My saliva came back in eight days,  and I was almost broke down and cried because I just couldn't believe it.

And then my eyes improved, even though the improvement in my tear, film production wasn't as dramatic as my saliva, but that just gave me all the hope in the world.

I had some headaches and anxiety. but after about four months of taking LDN at 4.5 milligrams, every night, I developed a reoccurring urinary tract infection that just wouldn't go away.

And my LDN began to fail as well because the LDN benefits that I had experienced were wiped out. I had a case of candida overgrowth. So I immediately treated with a strict diet and antifungal medications and LDN began to work again. But after another seven months, LDN failed me again.

When I found out that it was a matter of LDN build up in my body so I experimented with a lower dosage, and I skipped a few nights, and now it has performed more consistently, and I'm still able to enjoy the benefits of LDN.

LDN is the best thing that ever happened to me. I have great relief from my symptoms, and I have hopes again because I believe that LDN stopped my Sjögren's from progressing and possibly even prevented any other autoimmune diseases from developing. So overall speaking, I am just a happier and healthier person.

Play the video to listen to the whole story.

Barbara (2) - US: Fibromyalgia, Sjogren's Syndrome Arthritis, Hypothyroidism (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Barbara from the United States shares her Sjögren's Syndrome and LDN story on the LDN Radio Show with Linda Elsegood.

Barbara suddenly noticed something was wrong with her health when she began to experience sudden pain without an apparent cause. The pain eventually intensified until the point where it hurt to lift her foot onto the sidewalk to avoid the curb.

After the pain naturally died down, it returned a few years later which is when Barbara was then diagnosed with Sjögren's Syndrome. Upon hearing about Low Dose Naltrexone (LDN) through her cousin, she decided she must try it.

Barbara is now able to enjoy time with her family without any serious pain and do the simple things like climbing the stairs without any stiffness in her legs.

This is a summary of Barbara’s interview. Please listen to the rest of Barbara’s story by clicking on the video above.

Shonna - 7th August 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood. Today I'm joined by Shonna from the United States who uses LDN for chronic fatigue syndrome, Sjogren's, and she has had other conditions that we will learn about.

Thank you for joining us today. Shona. 

Shonna: Hi, Linda. It's my pleasure. I join you from Alberta, Canada. Oh, 

Linda Elsegood: Oh sorry. 

Shonna: Yeah, a proud Canadian. Thank you for having me on. 

Linda Elsegood: wonderful and sorry for calling you an American. Anyway, could you tell us, your story up until finding LDN? What was your story?

Shonna: Well as a young girl I had always been a Stickley as a toddler, I had been bitten by a rabid dog. And at that time I was given antibiotics for that with seven injections of live virus. And, in the same time period, I had untreated strep and developed a traumatic fever. So I was a Stickley wimpy young gal, I struggled through my teen years, tried to be like the other people that I knew and have lots of energy. And I mean I just always struggled. And then in 1988, I finished my nurse's training, my first job as an RN out in rural Alberta, and within two weeks, I caught mononucleosis.

Part of my job was paediatrics, and I  was very, very sick with that. I actually was hospitalized for a few days for dehydration and weakness, and I never fully recovered from that I was up and down for decades. That was 30 years ago, and I raised four kids in 1996. I had an acute episode of fatigue and weakness. I was a single mom raising four kids. I was working and all of a sudden I I had to be off work for four months. I couldn't even go downstairs and change laundry loads and carry up my dry load in one go I had to lay down, but in four months it kind of resolved and I went on up and down, up and down. 

In 2020 in the fall, I was working as an emergency nurse in our rural hospital here just outside of Edmonton, Alberta, and I caught a virus. I gain a viral load. And in a few months, it started taking me down within a year and a half, I could no longer get out of bed. And my cognitive abilities had declined drastically, and I was wasting away.

I was bed-bound, I was isolated. I would say things and have no recollection that I had said to them. I would do things and have no recollection that I had done them. My doctor had nothing to offer me. He looked at me with such, sorry, eyes over at the top of his glasses and he had seen me go through many of my episodes before and reassured me that you'd rally through this.

He sent me to a rheumatologist who had nothing to offer me. And that went on for months, Linda, I had no socialization. I couldn't go down the back deck stairs to go outside, and I was quite certain that my life was over, that this was me dying. And my kids went into fear mode. Their fears were shocking I was the strong person. I was the matriarch of the family. They depended on me and. And they literally were supporting me financially and physically. And we're talking about maybe mom needs to go into a home. And so in that process, I was diagnosed with Sjogren's, which greatly affected my eyesight.

I had stopped crafting, I had stopped reading. I couldn't read anymore. I had stopped driving, I didn't have the energy, I couldn't see, and I was really happy when I found some treatments for that and my eyesight came back. I had difficulty holding conversations. I was absent.

In the conversation's only partly there. And I had such great difficulty finding the words and expressing myself that I stopped speaking because I was afraid of what would or wouldn't come out of my mouth. And so as my eyesight cleared, I realized that the reason that I couldn't read was that I couldn't discern the words on the page. I couldn't comprehend the text. I realized that that went along with not comprehending the conversations with. When I went to smile, my face wouldn't really smile. I couldn't feel a smile. So I went into my doctor, and he gave me another wild look over his glasses and sent me for a brain MRI, which came back negative.

And he sent me to a neurologist and the neurologist was right on the money, young man, and he said I had Sjogren's. And in the meantime, I had been diagnosed with myalgic encephalomyelitis ME the new word for chronic fatigue syndrome. He said that the issue with those conditions, it's not neurological as an anatomical, it's an energy issue, a cellular energy issue.

Oh, okay. So. I began my journey with LDN. I went to my doctor and I said, I want to try this. And my doctor agreed as he had a patient on LDN and in a short time, within a week, he started to see results.

I came in a year later. This man had been stable on LDN. I came in with my beginnings of research from your Facebook group and presented it, and he said, well, I don't know if it'll work, but I have nothing to offer you, so let's give it a try. And I, what I found initially, Linda, was that I had weekly victories at the end of the first week, I found that my reading comprehension tension came back at the end of the second week. People around me were commenting that they noticed I wasn't word searching as much anymore, that my sentences actually were not fragmented anymore and that I was making sense. By the end of the third week, I went in and had a full-blown discussion with my doctor about it.

What I had experienced and what is next for me in my recovery. And within four weeks I could comprehend my writing. I had lost my ability to write. I looked like my writing looked like a dementia patient rating, although I had passed the clock test at the neurologist. And my writing was now legible.

So with that, I took other treatment requests to my doctor, and he monitored my LDN I started at 1.5 milligrams and uh, kind of broke the norm. I couldn't wait a month to go up. I really was desperate for results. So within two weeks, I went to three milligrams, and then within another three weeks, And that did not work for me. I have had wonderful success on the three milligrams and have added other treatments to this in, in that time period, because I was bed-bound, I had kind of forgotten how to walk. My body couldn't support itself. I had difficulty holding my head up even though I had more energy. I had muscle wasting in my joints and tendon and muscular, so I took five solid months of intense treatment and had lots of love and attention poured into my recovery by many people. And, um, in the fall time I was cleared to go back to work. Uh, I am, although not to act active bedside duty.

My doctor, the rheumatologist, my neurologist and those that no one loves me are just simply amazed by my recovery. As time went by and more unfolded about other aspects of my poor health. And I talked to my doctor, and I asked, are there any other specialists that I should see?

These things are unfolding and Linda, he's a very brave man. A very well seasoned, very knowledgeable, and he actually took off his glasses and set them down, and he said to me, the help and the knowledge and the direction that you have received from your Facebook support groups have undoubtedly helped you more than an unknowledgeable or not up to date specialist. Wow, those were such brave words. I have such respect for him to speak to them. I had at the very beginning, not at the very beginning after actually, I was on LDN. I was able to get the LDN book and bring it in, and I gave it to my doctor. And he keeps it in his office. He, uh, every once in a while when I go in now, he'll say, you know, I shared this with my colleague about this and that, and this and that. I'm just really happy to be sharing my journey—It’s kind of not quite short of miraculous.

Linda Elsegood: I have to say it's such an amazing story. And if you've listened to my story, there's a lot of similarities there. So I know exactly how you feel. And I have to thank you for point out to everybody that you also had help with our Facebook group and to give something back, I think it is amazing. So I'd like to thank you very much for your time that you donate to spread the word and to help others.

Shonna: Thank you, Linda. It is. It's my pleasure. I am so thankful to be in a position of renewed health. Now. That I'm able to do that. I'm, I'm just, uh, eternally thankful for the research that has been coordinated and the answers that have been brought to my life through this medication, this application of the medication.

Linda Elsegood: as I say, once again, thank you very much for sharing your experience with us today. 

Shonna: Thank you for calling. Take care, Linda. Thank you. 

Linda Elsegood: This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station software and with phone lines and phone calls to be able to continue with the right year of the show.

And thank you for listening.

Linda Elsegood: Any questions or comments you may have, email me 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.

Amy on the LDN Radio Show - 13th December 2017 (Low dose naltrexone) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Amy from the United States shares her Sjögren's Syndrome and LDN Story on the LDN Radio Show with Linda Elsegood.

Amy first noticed an issue with her health when she began to have a constant pain in her pelvis. She initially attributed it to her running, but as other symptoms developed she went to a neurologist who was unable to diagnose her.

Determined to find the cause of her pain, she went to get blood tests at a local clinic who eventually diagnosed her Amy with Sjögren's Syndrome. Low Dose Naltrexone (LDN) has helped her to get over her ‘stiff person’s syndrome’ and get back to running regularly.

This is a summary of Amy’s interview. Please listen to the rest of Amy’s story by clicking on the video above.