LDN Video Interviews and Presentations

Amarjid - India: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I'd like to introduce Amarjid from India who takes LDN for CFS/ME.

Thank you for joining me. Could you tell me when you first started to notice any symptoms?

Amarjid: I'm 72 now. I had been suffering from it since I was a small child.

Linda Elsegood: Really? Wow.

Amarjid: A long time. Yes, all my life I suffered from Chronic Fatigue Syndrome.

Linda Elsegood: And how did that impact on your life?

Amarjid: I have not been able to work since 1975. It gives me extreme tiredness and aching in almost all the muscles of the body.

Linda Elsegood: And what would you say, before you heard about LDN, what would you have scored your quality of life on a score of one to 10 and 10 being the best?

Amarjid: It's still there before LDN only have to be about 10%.

Linda Elsegood: What would you have said your quality of life was like on a scale of one to 10 before?

Amarjid: It was really bad and it still bad. Then I felt 10% better.

Linda Elsegood: What had it done to help you? How did LDN help? Has it helped with the fatigue?

Amarjid: It gives me more energy and reduces the muscle pain

Linda Elsegood: And how did you manage to get a prescription for the LDN?

Amarjid: Here It's imperative the GP. He has been describing it me. I only have guidance until next year. I don't know how to do after that.

Linda Elsegood: I might be able to help you with that. I'll tell you details at the end, and I'll send you what you need to do. What would you say to other people who are thinking of trying LDN for EME/CFS?

Amarjid: It doesn't help very much but it helped me 10%.

Linda Elsegood: When you first started, did you have to start on an Ultra-Low Dose and work your way up?

Amarjid: Yes.

Linda Elsegood: And did you notice any side effects?

Amarjid: No. Because it was a small dose. I started in 1 mg and then every month I up to and then 3 mgs 2 mgs two, and now 3,5 mg.

Linda Elsegood: Good. And how long have you been taking LDN?

Amarjid: I think two years now.

Linda Elsegood: Right. Well, that's good. Well, I hope LDN continues working for you, even if it hasn't been that spectacular. 10% is certainly better than where you were before, wasn't it?

Amarjid: Yes, indeed. Thank you very much for sharing your story with us.

Ali - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Ali from England and she has ME.

Ali: Hello. 

Linda Elsegood: Could you tell us when you first started getting your symptoms? 

Ali: I'm in my early twenties. I had a lot of tonsillitis and a lot of colds and flu, and I had them removed, and I was well for a year. Um, and then I moved to London, and I started to get really tired for no apparent reason.

Um, and I just picked up everything going. Then I had glandular fever and lots of jabs to go on holiday. Lots of vaccinations. Um, anti-malaria tablets and, um, antibiotics for, um, an abscess on my tooth. And that was it. I came back from holiday and every one said to me, "It doesn't seem like you're very well. And, um, I didn't feel well at all, but, um, I went through the motions, kept going to work.

And then finally, one morning, I woke up and I couldn't walk.   My legs were too painful for me to move. So, I crawled downstairs and phoned in work  and that was it really. And I kept trying to go back in, and they would just send me home 'cause I looked so dreadful and that was round about 1999 and in 2000 I got the diagnosis

Linda Elsegood: And what were you offered from your own GP? 

Um, well, my own GP was saying I was depressed and I was saying if I am depressed it's because I've gained loads of weight, I'm tired, and I'm in pain. Um, but, you know, but while I was down, I didn't think the problem was depression. Um, but the consultant at the ME centre, um, just offered me antidepressants.

And, um, that was about it really; nothing else. He wanted me to go in and spend several thousand pounds on rehabilitation, and I'd looked into it, and seen there wasn't really a treatment protocol at all. It was just a case of pacing, which means having regular breaks and graded exercise, which is doing a little bit more each day.

And I thought, well, I can do that for myself so I don't need to pay to do it. So they were the only options.

Linda Elsegood: So when did you find LDN?

Ali: I had, um, I went to the hospital in 2001 and they thought I had Cushing's. And, um, I didn't; I had polycystic ovaries so that made me change my diet, and I cut out, um, lots of refined foods, um, so I lost a lot of weight and got quite better. I did a lot of Pilates and Yoga, and I was quite well for a few years.

I went back to work um, and then I lost my job again, I was made redundant then followed with a massive, um cold, um, that lasted a year and a half. And down I went again. So, um, I went 'cause I hadn't done any research for a couple of years because I kind of had the ME under control, though it wasn't true at all um I knew that, um, you never know. They were probably making headway with some treatment or something so I went, frantically searching on the internet to find that there wasn't anything still. Um, but I did come across LDN and. I printed off lots of information and went into my doctor. And luckily for me, he has a special interest in ME so he was very open to me trying LDN.So that's what I did. 

Linda Elsegood: And what did you find LDN did for you? 

Ali: Um, when I first took it, this is, um, December 2009. Um, it's coming up to Christmas and I was really desperate to try it because, you know, I  really thought it'd be great if I have some energy over Christmas, and be normal. Um, but when I first started out, it was quite difficult um, and I was one of the people that couldn't sleep very well. So I changed to daytime dosing. And then after a month or so I went back to night time dosing and I've been absolutely fine. Um, it's been wonderful for my fatigue. Um, my usual routine would be to get up about half-past eight, nine o'clock and by two o'clock in the afternoon, after lunch, I would need to rest, um, and probably sleep. I'd sleep for maybe two hours because that's my routine.

But, um, slowly and surely and I hadn't even realized I wasn't sleeping anymore. Um, I didn't need to. So it's, it's the horrible fatigue that you get with ME. And it seems to, I mean if I overdo it I still pay for things, and I'm tired, that horrible fatigue element you get with ME seems to have vanished. Really, I am still tired, but the actual fatigue element has all but gone really and I am still tired but not fatigued, which is one of the nastiest symptoms for me because you can't really do anything.

You can't go out for the day or work because you have to sleep.

Linda Elsegood: So what about pain levels? Have they improved? 

Ali: Yes, I used to get, um, I used to call it my, I've overdone it pain, um, if I did too much. Then I'd get pain, shooting pains in the top of my hips. And then that was my signal that I need to go and rest. But suddenly before I started taking the LDN and I used to get it quite a lot.

I mean, I used to get it on waking in the morning, so I would wake up stiff and in pain and almost immediately I took the LDN that all stopped as well. So the pain in my hips really, I hardly get it at all only if I do too much. So that's made a big difference. I was going to say, my immune system has really picked up because I used to, um, always have a cold. If I was near anyone who had a cold or a virus or anything, I'd pick it up. I had mumps the year before last even though I've had it as a child, you know, I really would just get anything and everything, but I don't anymore and I'm studying, and I sit next to people in the class who are coughing and you know I don't get it so it's really really helped my immunity.

Linda Elsegood:  Did you have any initial side effects when you first started?

Ali: Um, the only side effect that I suffered was, um, not being able to get to sleep. Um, even with, um, sleeping tablets I still suffered, and I had done a bit of research, and I know it says to take LDN at night because that's when the endorphin effect happens.

But I'd also read that it's okay to do daytime dosing. And I did the daytime dosing for a while, and it still worked and I still, you know, wasn't sleeping during the day, and the pain was still better so I thought it still must be working. And then after a few months I thought, I'll try and switch, so I switched back, and I got a really good night's sleep.

I don't know and that's the other thing. I don't wake up through the night anymore. I used to wake up three or four times through the night. You get broken sleep with ME. Um, but I don't do that anymore. I sleep from when I shut my eyes until I'm open they're open again in the morning and I have to get up. Fantastic!

Linda Elsegood:  A lot of people with ME seem to be very sensitive to drugs.

Did you have to have a very slow introduction? 

Ali: I didn't. I didn't start really small, and because I'm getting - I know a lot of people have to get 50 milligram tablets and put them into water and then take you to know inject - no, not inject, use a syringe to take the LDN. I was actually getting mine prepared specially from the pharmacist. I was taking 3.5, 3mg and

um, and looking back, I did have, sort of my symptoms did come to the sort of top first. I did feel quite dreadful for the first few weeks but that soon subsided. I stuck with it. So thinking about it I probably could have started on a smaller dose, but I do have friends that are on a sort of 0.1 of a milligram, and they've been great on it.

So, I think with ME, you are extra sensitive. So if I would say to anyone if they are trying, to probably start really small um like I didn't. Um, but I'm on 5.5 sorry 4.5 mg now. 

Linda Elsegood: So what would you say to other people with ME on top of that who are rather scared of taking LDN? 

Ali: Um, I would say really give it a go.

You really don't know until you've tried it and it has just been wonderful. It's really nice not to have to sleep, you know, lose half a day through sleeping. Um, it's really nice not to have to go down with a cold every few weeks, especially in the cold season. Hmm. Um, and it's nice to have a little bit of energy, just, it's just been such a fantastic drug.

It's such a cheap drug. Um, and I think if you can take enough information to your GP, um, you know, try to persuade him to try, let you try it, um, as well.

Linda Elsegood:  Oh, well, thank you very much.

Ali:  Please stick with it. It can be a bit bumpy at first, but really stick with it, and you'll see the results.

Carrie Forrest, MBA, MPH (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Carrie takes LDN for an autoimmune thyroid disorder/thyroid cancer, PCOS, chronic fatigue, and migraines.

Carrie Forrest is a nutritionist and takes Low Dose Naltrexone (LDN) for a variety of conditions. She had thyroid cancer in 2012 and started taking LDN 6 years ago to help control her antibodies. It also relieves her joint pain and IBS symptoms. She has become an ldnresearchtrust.org volunteer and shares healthy recipes on the LDN news letter. Listen to her story in this interesting 21 minute interview with Linda.

Review Ken Bruce
Listen to the video for the full story.

Sandy discussed her Chronic Epstein Barr Virus, CFS/ME and LDN Journey (LDN, low-dose Naltrexone) from LDN Research Trust on Vimeo.

Sandy was diagnosed with multiple viruses including Epstein’s Bar Virus which caused pain and chronic fatigue, migraines, and an extremely poor autoimmune system. She finally found a doctor who did extensive tests and prescribed Low Dose Naltrexone (LDN). She describes the wonderful improvements that happened over the last year and a half. All her viruses are dormant now and the pain is gone. Her energy is back and she now has her life back.

Lori shares her story of LDN for ME/CFS (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Derek Enlander Talks about Low Dose Naltrexone LDN, CFS/ME 2021 (LDN) from LDN Research Trust on Vimeo.

Dr. Derek Enlander shares his knowledge about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities due to extreme fatigue. At times, ME/CFS may confine them to bed. Low Dose Naltrexone (LDN) is very effective in improving the immune system and reducing or removing the symptoms.

Review by Ken Bruce

Derek Enlander, MD, is an Internist specializing in ME/CFS, fibromyalgia, and Lyme disease. Though originally from Belfast in Northern Ireland (UK), he now works in New York City, New York, United States. He is a clinical instructor at The Icahn School of Medicine at Mount Sinai and leads the CFS Center at Mount Sinai Hospital in New York City. Committed to introducing the next generation of doctors to the best training in ME/CFS, he frequently has medical students and interns shadow him in his office.

NutriChem's LDN Book Event with Dr. Yousuf Siddiqui (Low dose naltrexone) from LDN Research Trust on Vimeo.

Dr. Yousuf Siddiqui, B.Arch.Sci., N.D

Autoimmunity, The Thyroid, Low-dose Naltrexone (LDN) & Beyond

Dr. Yousuf Siddiqui is a Naturopathic doctor who is very knowledgeable about thyroid problems and how to deal them. He measures the TSH, T3, T4 levels along with other indicators. He ties many autoimmune conditions like fibromyalgia and Hashimoto’s to the thyroid imbalances. All of this is discussed in detail, along with how LDN can play a role in modulating our systems and improve thyroid performance.

Review by Ken Bruce

Dr. Yousuf offers a non-judgemental and compassionate approach to resolve complex imbalances in the body. Initially trained in architectural science, Dr. Yousuf has spent the last 20 years studying traditional medicine.

He believes that the foundation of health is digestion. Healing the microbiome, addressing SIBO, eliminating parasites, and improving nutritional absorption can have a cascade effect towards restoring health. His clinical focus extends to men and women’s reproductive health, thyroid health, chronic fatigue, fibromyalgia, and metabolic syndromes.
 

Teresa shares her Fibromyalgia, CFS, Thyroid disfunction, Spondyloarthritis, IBS and LDN Story (low dose naltrexone, LDN) from LDN Research Trust on Vimeo.

Teresa is from Portugal and suffers many autoimmune conditions. The worst is Fibromyalgia which doctors don’t recognize easily and don’t have a treatment for. But she did her research and tried LDN. She suffered many years but has an improved quality of life thanks to the Low Dose Naltrexone.

Elizabeth uses LDN for: Chronic Lyme Disease, CFS/ME, Food sensitivities and Cipro (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Michelle Resendez FNP-C - 15th Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Michelle  Resendez is a certified family nurse practitioner. She combines her love for alternative and natural medicine alongside traditional medicine.

She has successfully treated patients with a diverse range of health conditions that have not responded well to conventional medical treatments.

She said" I first learned about LDN about 10 to 12 years ago, first learned about it from a naturopathic medical. The first patients I treated had thyroid conditions, Hashimoto's, Graves thyroiditis. And so I was really using it to try to the modulator assist the thyroid in functioning better. And from that point, it really expanded and opened the horizons, treating other things.

So we found that people with thyroid conditions, if they're taking thyroid medication, usually have to reduce the amount of thyroid medication.

When I start someone on Low Dose Naltrexone (LDN), easily around 0.5 to one milligram at night, and I will either reduce their thyroid medication in half, or I will just reduce, if they're on a T three medication, I'll reduce that down.

 A lot of times, their autoantibodies will start going down, and that will help the thyroid function better.

Sometimes you'll get some adverse side effects like tremors or palpitations, or just feel a little bit more excitable than her used to feel.

I have a lot of patients start noticing the effect almost immediately within a couple of days. Depends on what condition I'm treating.

A osteoarthritis type pain or structural type pain people usually notice the effects within a week of taking that.

Once they move out to one or two milligrams, they start feeling some relief.

Antibodies are a little bit more resistant, and it might take, two to three months to see antibodies go down with LDN. And that's because of the treatment approach for that is really multifactorial.

And the LDN is just an adjunct to that. And usually, we do lifestyle modifications and diet and, and other interventions to help those antibodies come down as well.

Anyone starting Low Dose Naltrexone (LDN) can experience negative side effects. The most common would be that when they get a rebound effect it at night with those endorphins kicking up, they can get some anxiety. They can get some insomnia.

Patients that we treat for viral conditions or reactivation syndromes like Chronic Fatigue Syndrome, they can actually get more severe adverse side effects such as sweating, fevers, flu like symptoms, feeling sore throat, things like that.

All of that is expected and typical. I don't like to stop treatment if they're experiencing those side effects because that's telling you that it's working. We're getting the endorphin release that we're looking for, and we're getting the immune system enhancements that we're looking for.

Those side effects are what I would consider good responses.

I haven't had anyone had any side effects that  I would consider to be adverse like hives—rashes, vomiting, anything so severe that I'd have to stop them on it.

I treat GI conditions as well. I've had probably the most success with gut issues. It's one of my top responders. Some of my earlier patients were Crohn's patients.

LDN seems to work pretty well for the exhaustion, the fatigue and the pain.

The conditions that I treat teenagers for could be anything from Attention Deficit Disorder, Depression, pain conditions, allergies, sleep issues.

Some of my kids are on the autism spectrum, so I do treat that as well.

I do have quite a few teens and young children on LDN. And I'll actually have them on liquid if they're too young to swallow a pill or won't tolerate a gummy or a sublingual lozenge.

I do have a traditional medical doctor referring to me, Neurology, Cardiology, Rheumatology. Dermatology because there's a lot of dermatologic conditions that can be treated very successfully with both topical LDN called Xeno top and then oral LDN.

The skin conditions I am treating it for it would be the Legos, Psoriasis, Rosacea, Eczema. Those are probably the top of all the skin conditions that respond really well to it. It takes normally 3 months to see results.

There's trials to find if there are some food triggers associated with that.

A lot of it is when they're having fires and because it's triggered by something and I want to find out what that trigger is.

And then the LDN just helps the body heal itself. So it's keeps them in a remission state.

When I first see a patient I typically wll do labs tests first that looks at allergies, hormones, thyroid, inflammatory markers, genetics, things like that. I try to find triggers if I can identify any and remove those before then starting on LDN. I like to see how they respond first to that.

I like to do things in stages so we can really see how impactful each thing is at each stage. So I'll take away the food triggers first if I can identify them and then add LDN onto that at some point.

Right now we've just moved into our new office. So my business partner and I have been here for three months. I'm at a two-month waiting list right now. Once we hire some more back-office staff, I'll be able to stack more appointments and that will trim down for maybe a month or two and then we'll probably get booked up again. I do keep appointments open early morning and sometimes I'll see patients after my last appointment for the day. If there's something urgent or somebody's not responding favourably to meditation or something.

I leave those time slots available for that so I can get people in if I really need.

I would say on average, patients see me every three months. That would be somebody who is stable, doing well on their regimen and not needing any further testing or imaging or interventions done.

So some patients I will see on a monthly basis if they have a lot more chronic illnesses and conditions because I like to do those steps, plan out, maybe CBO treatment, diet.

Also with hormones, thyroid continue to add things to optimize how they're doing and their quality of life.

I have some come in annually. They're probably not my patients on LDN. They're probably more. They're doing our mono treatments, pellets, injections. Yhey're doing other treatments other than just LDN.

Summary from Dr Michelle  Resendez YouTube interview. LDN Radio Show Listen to the video for the full interview.