LDN Video Interviews and Presentations

Radio Show interviews, and Presentations from the LDN 2013, 2014, 2016, 2017, 2018 and 2019 Conferences

They are also on our    Vimeo Channel    and    YouTube Channel

Helen - Scotland: CFS/ME (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Helen from Scotland, was diagnosed with Chronic Fatigue Syndrome at the age of 26, shortly after the birth of her daughter. Within the first couple weeks, she felt acutely unwell and experienced muscle spasms and twitching. Not only was it physical, it was also mental fatigue being experienced “all the time”, leaving Helen unable to function. 

The doctors didn't say much, as tests came back normal. The only abnormality was her Thyroid’s function. Eventually, she went to hospital for further testing, where they noticed her spleen was enlarged. Helen was not offered treatment, and she was diagnosed with CFS/ME. She relied heavily on her husband and family to help her. 

Every time Helen visited her GP, she was always told that there was nothing that can be done. 

Helen found out about LDN, after seeing it on the news in Scotland. She visited her GP in England and mentioned LDN, however they showed no interest. 

She has been on LDN for over two years, showing no initial side effects. However, when dosage is increased she felt “quite fuzzy,” so dropped it back down again. Smaller increases were used and the symptom disappeared.

LDN has helped Helen immensely, as she now suffers no symptoms of CFS/ME at all and would recommend gaining knowledge of the medication, via research and speaking to their GP or others who have used it.

Please watch the video to view the whole interview.

Any questions or comments you may have, please contact us.

Gisli - Iceland: ME/CFS (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Gisli had been suffering from CFS/ME since he was near 10 years old, the illness commonly known as Chronic Fatigue Syndrome and Low Dose Naltrexone. 

Gisli didn’t recognise the illness until he was 25 years old where he then received anti-depressants for his depression and mood swings. During this time, where he was commonly ignored by doctors, or receiving the wrong diagnosis treatment; before low dose naltrexone (LDN), Gisli was in a critical condition after encountering the common flu. He was in the third state of progression of his disease, which lead to paralysis for one and a half years, making him bed bound. Furthermore, Gisli also experienced the harsh reality of losing the ability to talk, difficulty to form sentences, as well as finding it a challenge to read text. This was not the end, he also became very hot which resulted in having post access to no malice. Most activities Gisli tried proceeded in him being in bed after. 

Like mentioned earlier, Gisli received little to no help from doctors, the medical system left his condition untreated which made him realise he would have to face his demons on his own. Gisli found patient and medical groups online, a community to connect with like people, experiencing similar conditions. Realising they had received help from LDN. Now knowing and gathering up further information from other people; Gisli managed to receive a prescription for low dose naltrexone (LDN) after visiting his General Practitioner with articles of the medication he desired to receive and try for himself. The GP understood Gisli’s situation and his deterioration from the past and agreed to it; trying out one half of a milligram for roughly three months. 

His side effects were sleeping more, sometimes for 18 hours a day. Although, Gisli did take this as a positive side effect, as before the medication he was finding it hard to sleep for near enough one and a half years. On the fourth day of medication he noticed the ability to concentrate more, the feeling of success through this medication made her tearful towards friends and family, where he had the positivity of hope, feeling as if he could live again. 
Now, Gisli posts positivity on online groups and resources. 

Summary of Gisli's interview, please listen to the video for the full story. 

Any questions or comments you may have, please Contact Us. We look forward to hearing from you 

Fiona - England: ME/CFS (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Fiona from England shares their Chronic Fatigue Syndrome (CFS/ME) and Low Dose Naltrexone (LDN) Story on the LDN Radio Show with Linda Elsegood.

Fiona first experienced symptoms of Chronic Fatigue Syndrome (CFS/ME) in late 2002, yet was not diagnosed until around 2007. She was restricted to her bed for the majority of her day, limited to completing two minute tasks before an overwhelming feeling of fatigue. On top of that, Fiona also struggled with muscle pain and spasms, further limiting her daily activities.

“It wasn’t too long after I started taking Low Dose Naltrexone (LDN) that I started to notice improvements in my health. The muscles in my legs have certainly improved, I’m now much more mobile.

I’d definitely recommend it to other people. While you may have to be persistent with some GPs in order to get the prescription, it’s one-hundred percent worth it for the final results.”

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

Eva - England: Fibromyalgia, CFS/ME, Lyme, Pain LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Eva from England takes Low Dose Naltrexone (LDN) for Fibromyalgia, ME/ CFS and Lyme disease. She primarily takes it for pain. 

I was about the age of 17 when I started experiencing pain, mainly back and neck pain. I'm 43 now. 

Later I was told I had some knowledge fibroids as well so I ended up with operation. I took a lot of painkillers for those first few years, and I do think they did a lot of damage.  
At the age of 30 the fatigue came in because I was just driving my body a little bit too hard with being too busy working and I didn't realize what I was doing at the time.
So the Chronic Fatigue syndrome came in much later. 

Before I started taking Low Dose Naltrexone (LDN), most days I was pretty inbound.  I tried to push and stay mentally active as much as I could, but I was very limited with regards to the activity. Everything takes planning, sort of social interactions and everything. My quality of life was like a three or four out of ten. So very limited. 

I used to do and still  do a lot of research online to try and see what I can do to help my situation. When day I found the LDN Research Trust and contacted Linda. She kindly helped me. That was a year ago.  I started very low dose of Low Dose Naltrexone because I had read that people can have problems starting at higher doses. It did take me a good few months to take up. The body did react.

Now I'm on 4.5. mg. I'm feeling really happy that LDN helped me. I'm not saying that the pain is gone  and it has absolutely helped with sleep as well, which was the benefits. I didn't sort of expect that. Very pleased. Unfortunately, it hasn't resolved everything. I wasn't expecting it to be the magic bullet.
And I know from blood panels I've had this year as well, although there are some quite high viral titers going on, the immune system is coping ok.

I know you're doing an amazing work and I think more people need to have access to it for sure.

Summary of Eva's interview, please listen to the video for the full story.

Elizabeth - US: CFS/ME, Lyme (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Elizabeth uses low dose naltrexone (LDN) for chronic Lyme disease, chronic fatigue syndrome (CFS), food sensitivities, and poisoning by Cipro.

When Elizabeth was very young she had anxiety and nausea, feeling on the verge of vomiting, and doctors found no diagnosis. At 12 she was taking Accutane, which interfered with her immune system and her symptoms increased through her teen years. 

She carried diagnoses of chronic fatigue syndrome, hypothyroidism, insomnia, food sensitivities, depression, anxiety, OCD, gastroparesis – all kinds of autoimmune disorders and symptoms - and was disabled. She got some improvement with a holistic treatment called NAET, but in her late 20s took ciprofloxacin (Cipro) and became bed-bound for over ten years. Unfortunately, later she took Cipro again and all her symptoms got exponentially worse.

She was diagnosed with POTS, or dysautonomia, and could not tolerate medications to heal.  She couldn’t tolerate food, heat, the sun, and couldn’t sleep. When she started LDN it made her feel like she had a bad flu, migraines, and a racing heart. Her doctor adjusted her thyroid medication to help with her heart rate and insomnia, but later was able to increase it back up. She learned that taking LDN in the morning, and a lowered dose, reduced those symptoms. Now her symptoms are 85% improved.

In addition, after 10 months, LDN has improved her endometriosis pain and cognitive functioning. She has been able to come off multiple other pharmaceutical medications, including those for her high blood pressure, antidepressants, and medication for CFS. By her research, she hopes to continue improving for up to 2 years.

Keywords:  Lyme disease, chronic fatigue syndrome, CFS, POTS, dysautonomia, hypothyroidism, insomnia, depression, anxiety, OCD, gastroparesis, food sensitivity, poisoning by Cipro, ciprofloxacin, endometriosis, high blood pressure, NAET, LDN, low dose naltrexone

Summary of Elizabeth'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. Thank you for joining us today.

Dr Ronald Hoffman Interviews Linda Elsegood on LDN and The LDN Book (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood shares her Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story on the Intelligent Medicine Podcast with Donald Hoffman.

In 1969 at the age of 13, Linda had glandular fever (Epstein-Barr virus). She was seriously ill and away from school for six months. 

Late 1999 Linda’s mother had a serious heart attack and the trauma affected her badly. She was working full time, travelling two and a half hours every day and running the home. This excessive workload and stress began to take its toll on her health, and by May 2000 she had lost her balance, lost feeling in the left side of her face and her head, tongue and nose were numb with pins and needles.

In early December 2003 Linda started Low Dose Naltrexone (LDN), and the results were incredibly positive. By Christmas Linda was functioning again, and her liver tests were back to normal. She felt like herself again.

Linda founded the LDN Research Trust in May 2004. In this interview she says that it is the most exciting thing she has ever done. She is able to give many hours a week to the Trust, helping people to get LDN and trying to get it into clinical trials.

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

Dr Jill Cottel, LDN Radio Show 30 Nov 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Welcome Jill! How does it feel to be our first guest on the new LDN Radio Show?

Dr Jill Cottel: Hello, Linda. It's very exciting.

Linda Elsegood:  Thank you! Isn't amazing? I mean, you're out there in the West coast of the US and I am in England. Amazing!

Could you give us an overview of your LDN experience, please?

Dr Jill Cottel: Sure. I've been prescribing Low Dose Naltrexone since 2008 and have had a lot of success with it. It's been exciting to watch patients as they respond. I have a general internal medicine practice, so I get to see a little bit of everything. And so I've had a chance to try LDN out on a number of different clinical situations. It's kinda nice to get that, the rounded experience and try it out for different things that aren't typically used. It's been interesting.

Linda Elsegood: What would you say the main conditions that you've seen?

Dr Jill Cottel: Well, let's say in the beginning mainly I was treating autoimmune arthritis just because that was where I was seeing the main focus and a lot of the reading I was doing, and a lot of patients that I had already in my practice had different types of autoimmune arthritis.

So that was where I started. And then those patients would refer to other patients, and then I started branching out. And then kind of, it's a mixed path that I have a lot of patients with fibromyalgia or just muscle type pain and then different types of chronic pain syndromes, and then just a wide variety of other things, asthma allergies and some neurologic issues.

Linda Elsegood: One of the questions that people like to know before they start is what are the side effects likely to be. Have you noticed any side effects?

Dr Jill Cottel: Well, it's, it's really well tolerated. When you compare it with just about anything else that a doctor would prescribe.  All-day long we write prescriptions for various things, for high blood pressure, diabetes and high cholesterol.

You look at any one of those numbers of things and plot the prescribing information. It can boggle the mind about the list of things that can happen. And so when you look at Low Dose Naltrexone, very, very minimal side effects are really good profile. I would say when people report a side effect, that usually has to do with sleep.

And I would say, in my practice, that's really only maybe 10 to 20% of the people will have sleep interruptions or vivid dreams. Sometimes that will pass and sometimes not. If it is an issue, they can always move it to dose at a different time of day. And that will usually clear up the problem.

And aside from that, pretty uncommon, I've had maybe in the past couple of years, a handful of patients who've had kind of a strange headache and that usually passed within the first week. And then some patients who their stomachs are very sensitive. In the beginning, they might get a little bit of loose stool.

But again, that tends to be just in that group of patients. Even that will generally pass after the first week. So not a lot of side effects to report.

Linda Elsegood: What drugs can't you take alongside with LDN?

Dr Jill Cottel: Basically it's the narcotic medications, Oxycodone, Hydrocodone, Morphine, those sorts of pain medications. Other medications for pain like Tylenol and ibuprofen are fine.

There's really a wide variety of things that can be taken with Low Dose Naltrexone and in the way of drug interactions I haven't seen any problems except with the narcotic type medications. 

Linda Elsegood: Because I know there have been people who've asked questions about Methotrexate, Interferon drugs, steroids, and I believe all of those can be used with LDN.

Dr Jill Cottel: Right. In my practice, I've not had any issues, and I know there are a number of other clinicians using them together and haven't reported any problems. so there's some good experience there.

Linda Elsegood: What would you say has been your greatest success with LDN?

Dr Jill Cottel: I would say, probably the autoimmune arthritis patients.

They respond really dramatically and quickly. That's exciting to see when that happens. With fibromyalgia patients, every now and then you'll get someone who responds really quickly and complete response. That's exciting too. It doesn't quite happen quite as often as the other ones.

Linda Elsegood: It's amazing, isn't it? That you can get people on very, very strong painkillers where elsewhere it doesn't control the pain. They come off then, try LDN and suddenly are playing free.

It always astounds me that such a small pill can do. It's like using a sledgehammer and it doesn't work, and you tickle it with a feather and It does.

Dr Jill Cottel: Exactly. One of my first patients came off large doses of pain medication a few years back. He was on almost a 100 mg of Oxycodone or something similar and wanted to try LDN. I thought:  "Well, this is just no way that this is going to work." And he tapered off on his own. And a hundred milligrams hadn't been controlling his pain. Then he was completely pain-free on 3 mg of LDN.

It was amazing! It worked! How can 3 mg of LDN work better than 100 mg of Oxycodone? There it was. He was pain free. That's amazing!

Linda Elsegood: Always amazes me too.

Dr Jill Cottel: Think about some of these studies showing that narcotic medications can actually cause hypersensitivity to pain and possibly central pain.

Look at it that way. Maybe it makes sense that patients are going to do better off of those medications and better on LDN.

Linda Elsegood: I've also been told that if you take a cocktail of pain medications, you can then take too many and then they don't work either.

So that's interesting as well.

Dr Jill Cottel: It's hard to sort out. Often a patient with chronic pain will come in, be on a lot of different types of medicines from different classes, usually off label, l because everyone's trying to help them and it's hard for those patients.

They've got a lot of side effects. I was getting them off of those medications slowly, then LDN may start responding. You can start weaning off some of these other medications. A lot of the medications that we use for chronic pain have many side effects, so people tend to feel a lot better being able to come off of them.

Linda Elsegood: That's good. Well, we'll take a break now, and when we come back, we'll take questions.

Today's show is sponsored by the Poway integrative medicine centre who take a holistic approach to provide the highest level of health care, combining internal medicine with alternative therapies, including acupuncture and Chinese medicine.

If you're in the San Diego area, they'd love to see you or if you're in the state of California, they offer secure video conferencing appointments when clinically appropriate. 

Go to www.pimchealth.com or call 858 312 1672. On Facebook, follow Jill Cattell MDs page.

Linda Elsegood: Welcome back! Now we've taken our first caller. Can you hear us?

Blanca: Yes. Thank you so much. I am here.

Linda Elsegood: Okay. What question would you like to ask Dr. Cottel?

Blanca: Doctor thank you so much for listening to my question. Did you have any experience with Multiple Myeloma?

It's a bone marrow cancer. My husband has it, and he has been taking LDN every day for four months and we have seen these numbers stable. So I was just wondering if you have any experience with Multiple Myeloma?

Dr Jill Cottel: Not so far, but that's a great question.

I would expect, based on the positive results that other people are getting with different types of blood disorders, that LDN would be something that could be beneficial. And you said that his numbers had been stable over the past four months.

Blanca: Yes, stable., stable. He's not using any chemotherapy for now. He did chemotherapy in 2013. I heard about Low Dose Naltrexone, but actually I wasn't sure where to get it or which doctor will give it to me. So finally, back in April, we got a prescription from a doctor, and he's been taking, it six months already. He's stopped taking it for like three weeks because he developed some anaemia because and we were afraid of any interactions of any with supplements. So we stopped the Low Dose Naltrexone, and I've noticed that his numbers raise a little bit. So we went back right away to Low Dose Naltrexone, and the numbers went back to a little lower but stable. It's not a huge change, remission or something, but at least it's keeping cancer at bay.

Dr Jill Cottel: How does he feel on it? Can you tell the difference taking LDN now versus when he wasn't taking it?

Blanca: He has a sleep problem many years ago, sleep apnea and he's not having any episodes of apnea anymore, and I've noticed that he sleeps deeper. He wakes up because he has that problem from before, but it's not as acute as it was before. I think it's helping like to get more like deep sleep.

 Dr Jill Cottel: That's good. I've had some patients report they're sleeping better on it. Their quality of sleep improves.

Blanca: Exactly. I wasn't sure if he has a little bit of anaemia if it's okay to take Low Dose Naltrexone or with Tylenol, but I heard Tylenol is fine.

Dr Jill Cottel: That'd be fine.

Blanca: And so having anaemia, do you think there's a problem?

Dr Jill Cottel: No, I can't see any reason why that would be a problem with anaemia.

Blanca:  That wasn't all his concerns because he didn't, he his thinking about introducing other very, very lows that were chemotherapy capsule. So I wasn't sure if it has any interactions with chemotherapy or immunosuppressant.

 Dr Jill Cottel: I don't have any experience in patients specifically with Multiple Myeloma, but I've had other patients where I've used LDN in combination with immunosuppressants, and we haven't seen any problems.

Blanca: Okay.

Linda Elsegood: Thank you. We will get to our next call on now. Hello Sabba. What question do you have for doctor Cottel?

Sabba: I'm a pharmacy student. I just learned about LDN and how it works. I'm really interested to know more, and I just wanted to see if the doctor can explain to me the exact mechanism of action.

What's happening with this medication? And in pharmacy school, I learned that it's mostly used for alcohol dependency, but they never talked about other indications for Low Dose Naltrexone. So I just wanted to see if the doctor can explain more about the medication.

 Dr Jill Cottel: That's a great question, and I'm so glad to hear it. From the best pharmacology standpoint, this is a fascinating compound.

There's an article that was published in 2014 in clinical rheumatology, and the lead author is Jared, Younger. The title is "The use of LDN as a novel anti-inflammatory treatment for chronic pain." It outlines different pathways and receptors. Also in the LDN book, which just came out this year, the first chapter is by Dr Steven Dickson, and it goes over the pharmacology of LDN in detail. There are several different ways in which we think it works. This chemical is a mixture of both up left-handedness and right-handedness. A number of these medicines that we use are like that. The left-handed side does a number of things with different receptors that have to do with inflammation. The right-hand side has to do with the effects that it has with the opioid receptors.

Sabba: Okay. Thank you so much.

Linda Elsegood: We'll go to our next caller now, James. Hello,  what question do you have for Dr Cottel?

James: I've been taking Low Dose Naltrexone for 27 months now. I began taking it for a Non-Hodgkin's Follicular Lymphoma and I'm almost 70 years old. I feel like I'm 50 years old again. It cleared up my depression; my brain fog, my fatigue. I'm physically about twice as strong as I was.

I've always done heating, and air conditioning work and  I'm actually back doing it again now.

It cleared up the ringing in my ears that I had for years. Anyway, my question is, after taking 4.5 mg for 27 months, I was wondering if I should dosing and scheduling. In this last Research Trust documentary, they talked about different dosing protocols. And I was wondering if I should get off of it for a few days and then take it seven days a week. If I should skip a day now and then, or skip a couple of days every so often if it would help.

Dr Jill Cottel:That's a very good question. I know that Dr. Dalglish in London is looking at intermittent dosing and it seemed like when you were in the treatment phase of the disease, it was continuous, and then off, somewhere in the distant future if you were in remission, you would maybe fiddle with the schedule a little bit. But I would say that for lymphoma, I would probably continue taking it daily, but  I'm not the most experienced person for oncology with it.

James: Thank you so much for all the good work! LDN just really given me my life back and I feel great.

I really appreciate all you did.

Linda Elsegood: That's good to know. Thank you. Well, we'll go to our next caller  Harry. What question would you like to put to Dr Jill Cottel?

Harry: Well, I don't have a question. Mine is a real success story with LDN. I had Ulcerative Colitis onset 15 years ago. And for the first eight or ten years after that, I was being given everything you could think of, 5,600 mg a day of Mel Salomon Emeran?, 50 mg of Oxycodone day, which didn't solve my pain problems, which nobody could figure out. And we finally, through dr Julian Whitaker, we got some information on Low Dose Naltrexone and started reading up on it and finally found a doctor who would prescribe it. And basically with me, we went, no dairy, gluten-free, making probiotics and 4 mg of LDN a day.

And I had resulted in less than a month.

And doctors, all of them would admit that there was no way that LDN could possibly hurt me, but none of them would prescribe it.

They did want to take out my colon. They were doing colonoscopy on me literally every four to six weeks.

The last one I had here this last August, they again. The gastro doctors will say, no evidence of active disease Ulcerative Colitis. They just won't admit it's gone. Literally, at this point, I have no dietary restrictions at all. I just take my 4 mg of LDN every night, and I eat anything and everything and have zero problems.

So I would just encourage anybody who has not found a doctor where they can talk to them about these problems and can maybe get something to just quote off-label to do so. Because at the very least, if all of the doctors admit that the LDN can't hurt you, it would seem to me that it would be inventory just to at least try it for some of the more drastic things.

And they had me on all kind of stuff and none of it worked. And there are some really nasty side effects to some of those drugs they use, just like with chemo drugs. So mine is just a good story, and I realize that may not work for everybody, but it's certainly worth trying.

Dr Jill Cottel: I agree.

James: One quick aside on the pharmacology student that called a while ago. There is a video out to YouTube called "LDN, how it works." which talks very specifically about how this works. I take it with me to every doctor I go.

It's something that a normal person can understand.

We need to try and get as much information out to everybody we can about this because there are so many things that people are taking that are so terrible on their system, and then they don't work.

 That's all I had. I do appreciate the time.

Linda Elsegood: Thank you, Harry. Well, we'll go to our next caller, Theresa. Hello. Would you like to ask a question to Dr.?

Theresa: It has been wonderful. I have been taking it since May. It has helped me tremendously. Unfortunately, it hasn't 100%, maybe 80, 85% but I do understand that it doesn't correct things that have been of an old issue.

Maybe I didn't catch my problem in time, but I was able to find my doctor who wasn't familiar with the medication, but he did allow me to try it. And it's been wonderful ever since. But it hasn't corrected everything so I still look at a couple of things, and I'm looking at something called Sam-e, which is an amino acid and it does suppose to help with arthritis but my concern is with stiffness. And so I'm wondering. Will it affect that? I know it affects your brain. The Sam-e and the LDN also work in the brain and I don't know if that would be an issue with mixing those together or not.

 And there's the other issue, which is Wilson's Temperature Syndrome, which may be an issue with me.

Dr Jill Cottel: That's a good question because I often will have patients and taking Sam-me and then we'll start an antidepressant if we're treating them for depression. And then it's important to know, what herbs and supplements they're on because not everybody will bring that up. And so there are some interactions with Sam-e and different types of antidepressant drugs. We do know that Low Dose Naltrexone has some interactions with the different neurotransmitters, but it's so mild in terms of the effects with LDN that you should be fine taking it with LDN.

Actually, I do have one patient who is taking Sam-e with the LDN, and she actually did better with the combination than she did with the LDN by itself.

Theresa: That's great to know. Now my other concern is that we haven't looked into this part yet, but because my issues have been so evasive, Wilson's Temperature Syndrome, so we may be going down that road looking at certain protocols that may require some Cytomel for a small amount of time to regulate the body temperature. And this may resolve a lot of my issues. Is there any complication with using LDN and the Cytomel and maybe the Sam-e? I also use Ashwagandha.

So combining all those, I mean, I don't know what I'm doing, but I do know I feel so much better, but I don't want to pose another problem that may be worse down the road. So there would be the Cytomel and then the ashwagandha and the Sam-e.

 Dr Jill Cottel: So the Ashwagandha should not be a problem. The Cytomel I would just be very careful with that because some people will respond fairly dramatically Cytlmel just on their own when you're treating for low thyroid. And sometimes it's difficult to get the thyroid adjusted with that. So just, I would say talk to your doctor about dosing it very low and watch your thyroid numbers pretty closely.

I would say getting them checked, at least within the first six weeks of starting it. 

Theresa: He's, really unfamiliar with the LDN but my thyroid numbers are always fine, but with Wilson's temperature syndrome, the body temperature is always low.

So this is an indication of chronic infections so it can be mixed, but very, very cautiously.

Right. Well, I appreciate your time and thank you.

I heard about it about four years ago, and so lucky to have a compounding pharmacy online. Advertising it in my area, so that got the news out. So it's wonderful that the news is getting out and more people are going to be able to be a little bit less painful.

Linda Elsegood: Okay, well, we're going to have another break, and we'll be back with some more questions later. Today's show is sponsored by the Poway Integrative Medicine centre who take a holistic approach to provide the highest level of health care—combining internal medicine with alternative therapists, including acupuncture and Chinese medicine.

If you're in the San Diego area, they'd love to see you or you for in the state of California they offer secure video conferencing appointments when clinically appropriate. Go to www.pimchealth.com or call 858 312 1672

On Facebook follow Jill Cottell, MDs page.

Linda Elsegood: Welcome back and this time, which went by Cynthia. Hello, Cynthia. What question do you have for Dr. Cottel?

Dr Jill Cottel: I have PMR for the second time. I had been using LDN since July 2015, and when it came back again this July, it was significantly less pronounced than the last time. However, I'm not on steroids yet. I'm doing a low inflammatory diet, but if things get worse, is it alright if I do go into steroids? Also, there's a possibility I might be developing giant cell arthritis because I have a very painful jaw, sort of extreme tenderness on top of the head, but no headaches yet. Last time I was probable GCA, but,I had been in touch with my rheumatologists just yesterday.

Just in case they want to do a biopsy, but I really want to know where I stand beside the LDN and steroids.

Dr Jill Cottel: That's a very good question. If you were just dealing with the PMR alone, that would make it a little bit easier and it definitely, it would be fine to combine steroids with the LDN for PMR.

I've had patients do that. And you can generally get that away if you think less steroid and come down off of it more quickly. But if there's any possibility of the temporal arteritis, you have to be more careful about that because of having your vision affected. So I'd be more vigilant about that and getting your eyes checked frequently and making sure they are watching you closely.

Cynthia: Well, I'm hoping that I haven't got the GCA and I'm really hoping, but I up to what level can I take steroids because I know that with GCA they will often a GCA, sorry, start at 25 milligrams. The steroids, is that all right with LDN?

Dr Jill Cottel: It should be fine.

Cynthia: Oh great. I mean, I'm hoping not to because last time I was on steroids for three and a half years and then I was on methotrexate as well for the last year probably, and I didn't like either of them, like all the side effects combined, so I'm hoping to keep off the steroids. I just wanted to know where I was because I'm hoping to see my rheumatologist who will obviously know nothing about LDN.

Linda Elsegood: Sure. Well, good luck. with that. Bye-bye. Okay, next we have Linda. Do you have a question?

Yes, I do. I have severe Crohn's. I've had three bowel resections, and the last one I ended up with a hospital, a bug on a ventilator for two months and almost died. So it's very important that I take my LDN all the time. I've been on it for about six years, but here's my problem.

Now that they look in my colon and basically in remission I still can't control the bowel movements and diarrhoea all the time, but it's better than it used to be. I also have multiple pain issues, Fibromyalgia, myofascial pain, Stenosis and I've had to have my ureters replaced with tubes that have to be changed out every 90 days or so. I have not been able to let go of my pain medication. I worked out a plan for myself because I couldn't go off the pain medication. I don't take any pain medication after 3:00 PM in the afternoon and when I go to bed at 10 pm I take my LDN.

Do you see a problem with that?

Dr Jill Cottel: I don't.I mean if my patients are on pain medication and they're taking it so frequently that they've always got some in their blood it can be a problem. So even if their last dose, is it three, if they've already taken, a certain amount of medication that day already, it may not be completely out of their system by bedtime. But if you're on a small enough amount that you're getting enough space out from it, you should be OK. And if not you should know already because the pain would come back, and you get some withdrawal symptoms. There is the issue of course, while your chronic narcotics, the hyperalgesia of the central nervous system, pain effects from being on them.

It's risk versus benefit and with all the different pain type syndromes you're having if it's something that you aren't able to come off of you have to just do your best.

Linda: I have tried, and it just has been impossible for me. I ended up becoming homebound and in bed, and I refused to accept that, and I fight as hard as I can, so I take the minimal dose.

The earliest possible during the day and then just do the white knuckle teeth-gritting when it gets to be there in the day so that I can have my naltrexone at night. And I think it's working because my colon is still beautiful.

I so much wanted somebody to tell me if that was an acceptable way to combine them or not. So thank you very, very much. 

Mary: I have been looking at LDN for a long time, and I haven't gotten a doctor to prescribe it for me. I had to ask a couple of doctors in the UK. We live in Sweden for three and a half years, and I went to the UK for treatment with finally identical hormones and I asked the doctor there to prescribe it, but she wouldn't, she just didn't think it made any difference. But she said she didn't believe there was any research that proved that it would help. I've gone to the seminar in Las Vegas and I thought that it would help me. I currently am not taking much pain medicine. I take Arthrotec now and then. I have Fibromyalgia,  Chronic Fatigue, and the fatigue is bothering me much more than the pain now. Do you think LDN would help me?

Dr Jill Cottel: I do. Well, based on my experience. With my patients who have Fibromyalgia and Chronic Fatigue, for the Fibromyalgia, almost all of my patients have had some benefit, and a very few have not.

Almost everyone has had some. And then I've had patients where they've had dramatic improvements with the Fibromyalgia, and same thing with Chronic Fatigue. Most of my Chronic Fatigue patients are feeling much better. We do have a good couple studies looking at Fibromyalgia with Low Dose Naltrexone and you should be able to find someone to prescribe that for you.

Mary: Now we just moved about two weeks ago to Austin, Texas. Do you have, do you know of any doctors in this area that is familiar with it?

Linda Elsegood: We have a list, and there are some doctors around that area. If you would like to send me an email, contact@ldnresearchtrust.org, and we will get back to you with some of the doctors that we know of that prescribe.

Linda Elsegood: And we will quickly get to the next person. So thank you very much, Mary, for your call. Next caller is Robin. Hi there.

Robin: Hi there. My question regarding Chronic Fatigue. You just answered part of my question about Chronic Fatigue Syndrome. But I wanted to be a little bit more specific. My son, who is 18 years old, has been suffering from CFS for about two years. He seems to be improving with, nothing, I guess He's on an antiviral that doesn't seem to be helping to me, but he's just gradually getting better and specifically, do you think that it would help his, like these setbacks and crashes that he has that we're trying to really put an end to? I mean, what specifically with CFS doesn't seem to help other than just the fatigue?

Dr Jill Cottel: I would say, probably energy improves. And also a lot of times mood improves.

And so patients, sometimes the symptoms aren't as much improved, but their ability to cope with the symptoms is better. Does he have any muscle type pain at all, or is it just the fatigue?

Robin: He really doesn't have muscle pain. He has suggested that his limbs feel heavy at times. He occasionally has a headache, but not often.

It really just seems this excessive fatigue. If he doesn't get enough sleep, it's stress and emotional stress or concentrating in school, that seems to cause these setbacks the most. And then he can't basically, get off the couch for a couple of days.

Dr Jill Cottel: I would think it'd be worth trying.

Robin: I agree. Okay. I just wanted to confirm because I hear it used more with pain and Fibromyalgia, but not strictly with Chronic Fatigue syndrome though.  Thank you very much. I appreciate your help. Bye-bye.

Linda Elsegood: Sarah on Facebook wanted to know if you'd had any success with LDN for treating Epstein-Barr.

Dr Jill Cottel: I have a patient who, she had had, illness with Epstein-Barr, and she just hadn't been able to bounce back from it.

And it had been, I'm going to say at least six months, and she started taking the LDN, and I want to say within about a month she was feeling much better and then it wasn't much longer after that she kind of felt back to normal.

Linda Elsegood: Okay. And Diddy said, can LDN be taken with high doses of Manganese?

Dr Jill Cottel: I don't see any reason why not.

Linda Elsegood: Does LDN help with adrenal insufficiency?

Dr Jill Cottel: That is a good question. I don't know the answer to that. I do have patients who've come in with the diagnosis of Adrenal Fatigue, which is kind of a nebulous sort of thing, and I'm not sure anyone knows why LDN helps those patients, but it might just be the endorphins themselves helping with energy food.

Linda Elsegood: Another question. Is endorphin buildup a real thing and should people occasionally skip a dose? And if so, how often?

Dr Jill Cottel: The patients that I've had generally when they skip doses, they feel worse. And sometimes not right away. But they can usually tell the difference sometimes after four or five days off.

I think in general, probably not skipping doses. And you figure it takes a while for the endorphin levels to decline anyway. So how much difference you're making just by skipping a day or two here and there, I'm probably not making too much of a difference.

Linda Elsegood: I must admit sometimes. I'm just drifting off to sleep, and I think, I haven't taken my LDN.

Do I get up and take it and wake himself up or just miss a dose? And I sometimes miss a dose, and it doesn't make any difference. I think sleep sometimes it's better than getting up and not going back to sleep. Another question here from Kaylyn. Does LDN stop the progression of the disease?

In her case, she's got Rheumatoid Arthritis?

Dr Jill Cottel: That's a good question. I don't know that anyone knows the answer to that for sure. I think that we look at terms like remission and how people are doing clinically. So, I mean, just matter of semantics, whether you say, stopped progressing or it's in remission.

We go by how the patient is feeling clinically.

Linda Elsegood: Okay. And another one there about dosing. The benefits of splitting the dose into two over a day for CFS/ME.

Dr Jill Cottel: So again, that's a very good question. I generally discouraged my patients from doing that just because that's not the way it's classically been dosed.

And it's not the way it's been dosed in the small studies that we've had. And the mechanisms of action is to briefly block those endorphin receptors. And it has to be brief, and it has to be in and out of your system. So what the implications would be of doing that again, only 12 hours later? We don't know and Naltrexone has metabolites that stay around in the body afterword. So I would tend to discourage it. 

Linda Elsegood: okay. We've got time for one more caller.

What question would you like to ask Joe?

Joe: I would like to ask for a group member who has been trying to get an answer to this question. If Dr Jill has ever treated or know of anyone treated for a condition called a Stiff Person Syndrome, also known as a Stiff-Man Syndrome and  I'll start there, and then there's a part two.

Dr Jill Cottel: That doesn't sound familiar.

Is there anything else that goes by?

Joe:  No. Those are the only two he stated and that I know of is the stiff person or stiff-man syndrome, but is, I'm pretty sure, I believe.

Linda Elsegood: It is actually on our list of conditions that LDN can treat.

Dr Jill Cottel: Okay. I'm looking at it just in front of the computer since I'm sitting here and it says a rare neurologic disorder of unclear cause with progressive rigidity and stiffness mainly affecting the trunk muscles with spasm. So no, I don't have any personal experience.

Joe: Okay.

Linda Elsegood: I'm really going to have to stop you there.

When the hour's up, we stopped. So I'd like to thank you very, very much for taking our calls. As always, Jill, the next Wednesday we'll be joined by doctor Jim, Dr John Kim, full details are on the website.

Thank you. We would like to thank today's show sponsor, Dr. Jill Cottel and the Poway Integrative Medicine Centre.

Any questions or comments you may have, please Contact Us.  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.

Diane - US: HIV, Fibromyalgia, CFS/ME (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Diane from the United States. You take LDN for fibromyalgia, chronic fatigue syndrome, and Diane has been HIV positive for 26 years. Thank you for joining me, Diane.

Diane: You're welcome. My pleasure.

Linda Elsegood: Could you tell me when you first started to become unwell with your fibre morale during your chronic fatigue?

Diane: Approximately 2008.

Linda Elsegood: And what were you noticing at that time?

Diane: Um, I was having several issues. Um, primarily though I, uh. Had passed out, they diagnosed as single P.  Here in the United States. It's an unexplained reason for blacking out. Um, and everything seemed to just go downhill from the day that I blacked out, fell and hit my head.

Um, and, um, was, I was put on, uh. Short term disability, so we could figure out what was happening to me in, in the course of, um, seeing doctors. Uh, I was diagnosed with fibromyalgia. Um, and along with that, uh, unfortunately, a seizure disorder due to the fall and hitting my head. Um, so that started my medical journey, uh, until I had several issues.

That don't necessarily, the seizure disorder doesn't necessarily relate to the ledges now check them, but the fibromyalgia is chronic fatigue. Certainly did. When I was diagnosed with the fibromyalgia, um, my doctor is very much a proponent of low dose naltrexone, and he mentioned it to me, but I did not take it.

Take the advice because it was very concerned about everything that was happening to me. So he mentioned it to me a few times and let me be comfortable with my decision. And then I finally, after a few years, once I got everything else straightened out, um, it was concentrating solely on the fibromyalgia in the chronic fatigue to perhaps give it a try.

And um. Yes. So, um, the winter of , uh, 12 December 2012

Linda Elsegood: and when you first started, did you notice any introductory side effects.

Diane: Well, uh, I have to say, I immediately felt a lot more energy and felt better, uh, within a couple of days. Mmm. Side effects. After a week reselling or first week, I noticed vivid dreaming and insomnia. So. Uh, I spoke to my doctor about it, and he suggested that I, um, just the dust, adjust the dose on my own, kind of play around with it and see what would work for me.

But unfortunately, at the same time, um, I got very sick with a virus that was going around members of my family. Got it. And um. I just became concerned about my immune system being getting so sick with this virus that I stopped the low dose naltrexone. Right. Um, well, when I, when you get very sick like that, and I didn't bounce back from it where my family members did, I was shipped for about six weeks.

With the HIV, even though I have a very healthy immune system, uh, and I didn't fully understand what the LDN was doing for me. I stopped it because I just wanted to get better again. Um, if you asked me today, would I stop it? I would say no, but I didn't know enough back then. Um, what the LDN was, was actually doing for me.

But then it happened again two more times. And it was coincidentally, we stopped the LDN and was off it for several months. I started again, and I got sick again. And I even, um, we sold to the Yahoo group and posted on there, if you have anybody ever, you know, uh. With this society act where you would get this upper respiratory lung, lung infection.

And everybody said, no, that's not normal. You know, nobody had experienced that. So I was concerned that something might be going on with me. So it just seemed that every time I took it, I got sick, and then when I went off it, I got better. It was purely coincidental. It was just a bad year. There was a lot of, uh, the weather was crazy, and there were a lot of germs going around, and so I just got sick a lot, which is not normal for me that year.

So moving forward, um, in the last, last six months, started with the LVN again, and I've been on it on a consistent basis, and it's been working very well for me. Fantastic. So what would you

Linda Elsegood: say now your quality of life is like?

Diane: Um, I would say that taking the LDN has given me back a good portion of my life. Um, prior to the LDN, the fatigue and the, uh, body. Aches and pains were so debilitating that I didn't do a whole lot. Now with the LCN, um, I feel wonderful. Um, and even though I might feel a little achy, uh, I still, it allows me to go out and exercise.

Um, I led to walk—a mile or two. I take yoga classes a couple of times a week, none of which I did before the load check stuff. Um, and socially I'm more open to going out and doing things, being able to, um, Nick commitments, which was something that I couldn't do prior to the LDN. Um. Fibromyalgia also comes with something called fibro fog, where you have cognitive dysfunctions and the inability to concentrate, or for me specifically, organized for an organized task to get things done with the LPN, fibro fog lifted.

And I was able to see my way through the day until you, okay, this morning I need to do this and this, and then this afternoon and that, uh, and to sit in the exercise, which is so critically important to me, the LTN allowing you to exercise that alone changed my life completely. And then it just gets better from there.

Well, it's amazing. Thank you very much

Linda Elsegood: for sharing your experience with us.

 

Any questions or comments you may have, please email us 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. 

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

Debra from England shared her chronic fatigue syndrome (CFS/ME) and Low Dose Naltrexone (LDN) experience with us.

Debra first noticed symptoms in 2009, she also had thyroid problems and was diagnosed by a consultant with CFS after blood tests etc and given medication.

She started LDN 2 years ago recommended by her consultant, at the time she had pain, fatigue, breathing and dry eyes. Initially she has sleeping issues but they soon went away.

Before LDN her quality of life on was 3 out of 10, 10 being the best. Now it is an 8 or 9!

Debra's thyroid issues were also resolved and she recommends LDN to everyone!

To listen to the full story click the video link.

Any questions or comments you may have, please email us at Contact@ldnresearchtrust.org.  I look forward to hearing from you. 

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

David from the United States shares his Chronic Fatigue Syndrome (CFS/ME) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

David first noticed symptoms of his Chronic Fatigue Syndrome (CFS/ME) in the spring of 2000 upon returning from a trip to the West Coast. For the next 6 months David suffered from a drop in his overall energy levels and was unable to exercise regularly anymore.

David thankfully had prior knowledge of Low Dose Naltrexone (LDN) and sought it out from his local pharmacy. Within three weeks of starting on LDN he was already beginning to feel much better and was able to return to regular running.

David strongly recommends that people research LDN and learn about its benefits so that if you know someone, or even if you yourself, is diagnosed with an autoimmune disease you can tackle the issue swiftly.

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