LDN Video Interviews and Presentations

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.

Lauren - 1st May 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Lauren is from the UK, and uses low dose naltrexone (LDN) for chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia, and Ehlers-Danlos syndromes (EDS).

Before starting LDN she was housebound for about 2 years. She lost mobility in her legs; and had constant migraines and dizziness, and a myriad of other symptoms. She was only 20, and rates her quality of life as a 2 at that point. Having no quality of life, she was on suicide watch. One day she decided to do some research, and came across LDN, and found Clinic 158 in Scotland, which arranged for a consultation with a doctor, and the prescription. Within 2-3 weeks on LDN 0.5 mg she was cleaning the house; and as the dose increased, she felt like a new person, with her independence back. She was able to return to work, and has her own home now, although she does have some bad days.

Her fibromyalgia began at age 13. She was a champion Irish dancer, and suddenly her fibromyalgia symptoms began, and soon she was wheelchair bound. It took 5 years to get a diagnosis. Living with fibromyalgia was very traumatizing, not only because of the chronic fatigue, but also the pain in her body. She was told her leg muscle mass was pretty much gone. Because of the fibromyalgia in her joints, at age 22 she was preparing to have a shoulder replaced because of loss of her rotator cuff and frequent dislocation. Now on LDN she only suffers a dislocation maybe once a week.

A couple months after being diagnosed with fibromyalgia she was diagnosed with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). A year later she was diagnosed with Ehlers-Danlos syndrome type 2, the hypermobility EDS. Things like cold weather, or a temperature her body wasn’t used to, would cause her shoulder to pop out. Her whole body was affected, but it tended to show most in her shoulder joint.

Now on LDN her pain is not gone, but it’s down to minimal, and a level she can cope with. She coped with excruciating pain daily for years, and now on LDN, having slight twinges here and there over her body is manageable. She is able to enjoy her life as a 23 year old.

 Summary of Lauren’s interview, please listen to the video for the full story.

Keywords: LDN, low dose naltrexone, chronic fatigue syndrome, CFS, myalgic encephalomyelitis, ME, fibromyalgia, Ehlers-Danlos syndromes, EDS

Dr Baldeep Bains MD - 23rd Jan 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today, my guest is Dr Bains, and he is the younger brother of Dr Harpal Bains, who you may have remembered we had on the show a few months ago now. Thank you for joining us, Dr Bains. First of all, can you tell us your background and about you and all the wonderful things that you've done to date. 

Dr Baldeep Bains: I grew up in Malaysia as my sister did, but then I was educated in the UK. I then went to university in Scotland and went to med school in Scotland. While I was in medical school, I had this mad idea that I wanted to join the military and before I knew it I’d signed on the dotted line and probably half of my life to the military. Upon finishing university, I'd spent a bit of time in Virginia. I joined the Navy, the general Navy. Upon finishing the officer's training, I spent about three years getting deployed in nice places, some not very nice places. As a Navy doctor, I’d look after old Marine commanders.

For the first five years after graduation, I spent most of my time doing the two operations. Upon completing them, we have to decide what you're going to do. I initially thought of a surgeon. I started off training to be an orthopaedic surgeon. I spent about four years doing orthopaedic surgery. I enjoyed it up to a certain extent. Then I realized that I was reaching a point where I wasn't passionate about surgery. I think I was passionate about something a bit more so I decided to quit surgery and joined general practice. I did my GP training and I qualified as a GP in 2009. 

My wife got pregnant in 2014 and when I was deployed for six months and I got back just in time before she gave birth. I think reality struck me that I can't continue with military life, I was having a family.

So I left the military in 2015 and then worked as a GP for a short while before my sister suggested that I should join her practice which is where I am now. So I've been at my sister's coming close to a year and a half now and working alongside her is where I heard about LDN. 

I've got to say it was quite a paradigm shift for me because when she first spoke to me about what she was going to do, I thought she was absolutely bonkers. I'm not going to lie to you all. We use nice guidelines and when she was talking to me about functional medicine... we had many arguments about how she was practising medicine and I was like, what are you doing? Are you crazy? Are you mad? Are you dead? I've got to say that we didn't see eye to eye initially with what she's doing. I think fortunately she persevered and she agreed. Even if I could see the way she does things and the way functional medicine works. I’m by no means trying to criticize the general practice. She’s done a fantastic job and I actually appreciate what my colleagues do but there's a certain extent to which we can actually help them and they're quite stuck with the reason I didn't blame them because they are guided by guidelines. A lot of the people who sit in the committees of guidelines are people who've got some vested interests elsewhere. I'm not gonna mention names, but I can understand the restrictions they have and why they can't. 

Yeah. It's quite hard for them to go explore other avenues. That's another way of doing things. I'm really glad I can introduce it as well because had I not been introduced, I think I would have been missing out on a lot, I love my patients. So I'm actually finding it harder and harder to be a GP now because of what I do know.

Linda Elsegood: What would you say are the main conditions that you are treating in the clinic?

Dr Baldeep Bains: I see the lion's share of the male patients. A lot of the male patients that we come across do come in with quite prominent symptoms of testosterone deficiency. That's one of the things, but I'm seeing a lot of patients with some degree of autoimmunity as well. I've seen patients with Hashimoto’s thyroiditis, chronic fatigue, Crohn's disease, bowel issues, etc. Increasingly I'm seeing more patients with autoimmune and bowel type issues. 

Linda Elsegood: When a patient first comes in to see you, how long is the initial consultation? Do you do lots of form-filling, questionnaire-answering with all of them? What's the procedure?

Dr Baldeep Bains: Most of the patients, we're looking to get one of their main symptoms, what their diet’s like, how their condition is affecting their activities of daily living. We can be asking quite a lot of questions. We spend anywhere between 1-2 hours with the patients. We try to read the evidence in order to find the root cause. Again, we will see a patient and we will treat the symptoms and the majority of the time that's what we do. But they keep pulling back the same issues again and again. If you don't look into food it takes time to look into a root cause, you can't just expect to spend five minutes with a patient talking about their history and find the root cause. You need to go into a lot more detail, which is what we try to aspire to do; just get into the nitty-gritty and hope to find what might be the root cause for a lot of these symptoms. 

Linda Elsegood: What other testing do you use? 

Dr Baldeep Bains: The majority of the time we will carry out a comprehensive blood panel. It’s one of the baseline things we do. So in a certain comprehensive blood panel, it would include the likes of a full blood count. You carry out a comprehensive biochemistry analysis looking into things like your liver function, kidney function. In our practice we do quite an in-depth hormonal evaluation, looking into quite a few different hormone levels and trying to see if anything that needs to be addressed. Beyond that, if a person does have a lot of bowel type symptoms, we will potentially do something along the lines of a comprehensive, thorough analysis, which is not a simple as microscopy. It gives you a lot more information. We would offer that if your bowel symptoms are quite prominent. I think we might do as well if something known as SIBO testing, small intestinal bacterial overgrowth, complaints of quite significant gut symptoms. We'll do something along those lines. We do allergy testing as well, and we use Cyrex. Personally, I feel it's one of the best kits out. I think it has been extremely comprehensive and they will probably them give us an overview as to what is going on, to keep eating the same foods and which is stimulating an inflammatory response. I think that that's the first few stages. Plus, I would normally offer a test when I first see a patient.

Linda Elsegood: When you ask patients about diet, are they honest with you as to what they eat or drink or do they tell you what they think you would like to hear?

Dr Baldeep Bains: That's a tricky one. I like to think my patients are honest with me. I think the majority of the patients we have are quite honest because by the time they come to see us, they're quite desperate. They've tried everything. I think they like to be as open and honest as they can with me. I think they are honest because of how they're feeling and their determination to get better.

Linda Elsegood: I was only asking because my mother lived with us for a few years. Unfortunately she, she got cancer and died. Before that, we would go and see the doctor and the doctor would say, “have you taken salt out of your diet?” I used to hide the salt because she was at the age where she used to use lots of lots of salt. I would sit there and I'd say, “you put so much salt on it, mom. It looks like snow, doesn't it?” And butter. “Have you cut down on the butter?”, “Oh yes. I don't use it as much.” “Mom, you use as much butter. It looks like cheese because it's so thick” but she didn't want to upset them. She wanted to please the doctor by letting them think she had done what she was told, but she didn't use, to tell the truth. I now have to hope that when I get older, my daughter doesn't come with me,

If we just continue treating symptoms and not the root cause, that root cause could be creating a lot of damage. It's vital to find out what that is. That is what's so good with functional medicine.

Dr Baldeep Bains: I completely agree with her. I think we actually have the luxury of time, which is what a GP doesn't have. I've got 10 minutes per patient, and in that time I've got to get a history from the patient, I’ve got to sort dates, I've got to get ready for my next patient. It’s especially complex with complex patients and complex patients are increasing in numbers. I've seen more and more patients with more and more complex problems coming in. I don't think treating symptoms is the answer to that. 

Linda Elsegood: You're seeing more and more people who have chronic conditions. What would you say is the difference between now and 40 years ago? Is it because we're eating different, or due to the fact that food is treated differently? When I was a child, everything was cooked from scratch. There were no additives. I hardly know how to pronounce some of them, let alone know what they are. What do you think is the cause? 

Dr Baldeep Bains: Reverse back 40-50 years ago, you're not seeing the problems that we had in those days. Compared to the number of solid issues we have nowadays it is just phenomenal. I've got no doubt it's to do with our diet. It's all about the fast food, and then you can get your hands on processed food, anything that's microwaveable, low phosphate and nothing else. No one has time to do things, you want everything in an instant. The busy lifestyle, the stress... life is a lot more stressful now because we've got a lot more demands and you've got everything in your face due to social media. I think stress has got a much more significant influence and the fact that we are actually doing less as well. Spending huge amounts of time in front of computer screens and TVs. Get yourself out, playing, get some sunlight, get exposed to sunlight. I can say my childhood is very different from the childhood experience now. 

Linda Elsegood: You were talking before we started and I'm sure you're quite an outdoorsy person, but what is your diet like? I mean, are you gluten-free, dairy-free? Are you a vegan? What is your diet? 

Dr Baldeep Bains: I am none of those, but I am quite careful about what I eat. I limit the amount of processed food I have. My kids have significantly reduced their intake of sugar. I use just for taste, such as half a spoon in my tea or in my coffee. I don't have any fizzy drinks. I drink water or milk. I'm quite fortunate in the sense that I don't really have many intolerances so I can actually cope with gluten. I've got a very narrow relationship to gluten. If I'm going to define myself, I've significantly reduced them on process over refined carbs. If I do have carbs, it traditionally would be half a plate or a quarter. I do love exercise and I need energy. So I still have carbs. Probably half my plate is protein. But I'm currently 43 and I feel fantastic. I train hard and I can sustain my mind. A craving I've got no real issues. I don’t have any fatigue issues, I'm not obese. I’d like to say that I'm in quite a decent shape, I think it's working for me. I don't eat junk. I've read a lot about intermittent fasting and I probably do that about two or three times a week. I try to fast for 16 hours and then tried to eat in the daylight hours which has been shown to be quite effective. I suppose if you say any dietary routine, but that's been quite recent, probably 2-3 weeks ago. I don't find it too hard to do.

Linda Elsegood: We’ve nearly run out of time, but very briefly, for parents who want to make sure that their children grow up as healthy as possible, what would you recommend to do diet-wise with children? Because it's very difficult with all the crisps and sweets and biscuits and advertising on television, how do you go about trying to establish healthy habits?

Dr Baldeep Bains:I think you get a vibe from them whilst they’re a baby. You've got to introduce them to good food and fruit and vegetables. We try to make everything from scratch, making home-cooked fruit. 

Linda Elsegood: You don't buy Robinsons or anything along those lines?

Dr Baldeep Bains: Nothing whatsoever. They drink water. That's the only thing they seem to pick. Once in a while, my daughter has fresh fruit juice, but apart from that, it's water and milk. That's all they have. I think trying to develop habits from the start and you're trying to give them a good breakfast. I try to avoid sugary cereals. I think even a traditional English breakfast as well, they'll have sausage, which I do try to get good quality sausage just for kids. Try to make a lot more home meals and try to get them less processed food. It's not easy on junior kids, even seven done. Life's extremely busy at that time. Everyone's quite time poor. It doesn't take a lot to make a decent kitchen. We know what we need to be doing and we should practice it. 

Linda Elsegood: We've come to the end very quickly. If patients would like to come and see you, how do they get in touch with you?

Dr Baldeep Bains: They can visit our website, www.harpalclinic.co.uk We have two practitioners there: my sister and I. I have a lot of patients with her too. You get the benefits of two practitioners and hopefully, when you come and see me, you can appreciate the frustrations and a lot of patients as well. I can understand what's going on and I can sense the limitations that they face and be able to give them a bit more of a balanced view. I think one thing we pride ourselves on is ongoing support. Most of my patients have an open email conversation. They can email me anytime and I will get back to them and I would advise them. I think on a lot of occasions patients find that quite reassuring. At the end of the day, I do things which are not very conventional. They didn't think their potentially own GP should be asking them, why are you doing such a thing? A good example is I prescribed LDN to one of my patients and I had a bit of a nasty email from a Polish GP asking me, what am I doing now? I think once the people are educated, once the GPs are educated, then you can get a GP alongside the patient and the GPs can work together with a patient and ultimately what we're doing, what we're looking for is to make the patient feel better. That's the aim. 

Linda Elsegood: That's fantastic. We'll have to have you back another day and thank you very much, Dr Baldeep for being our guest today. 

Dr Baldeep Bains: Thank you, Linda.

This show is sponsored by Dixon Chemist, who are experts in LDN at associated treatments in the UK. Dixon Chemist is the most cost-effective for LDN in all forms within the UK and Europe, maintaining safety standards far in excess of what is required. Why would you choose to get your LDN from anywhere else? Call 01414046545 today to speak to LDN experts. 

Any questions or comments you may have. Please 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.

Kent Holtorf (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.