LDN Video Interviews and Presentations

Pharmacist Gene Gresh - 20th May 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Gene Gresh has been a pharmacist for 20 years and works with his son who is also a pharmacist in Vernon, Connecticut.

In this presentation Gene Gresh discusses how when he started 20 years ago Low Dose Naltrexone was compounded but there was little known about it until many years later when scientific studies started to be conducted.  He set out himself to really study LDN beyond the anecdotal evidence he knew to exist through his own customers.      

In his survey of over 600 patients they got a lot of good information and one of the key points that they found was that most of the patients that discontinued LDN did so because they didn't ask questions. They experienced side effects or they didn't see the results they wanted in the time-frame they wanted so they stopped it without any kind of information. With some of these conditions, it's so important for them to get the good information which enables them to persist with it and deal with unwanted effects. 

Dr Phil Boyle - Women's Health and Low Dose Naltrexone Part 2 - 26 Feb 2020 from LDN Research Trust on Vimeo.

Dr Yusuf Saleeby - 19th Feb 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Yusuf Saleeby shares his Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Dr. Saleeby is a 1991 graduate with a medical degree from the Medical College of Georgia in Augusta Georgia. Upon completion of post-graduate training at East Carolina University School of Medicine in Greenville, North Carolina, he had a two decade career in Emergency Medicine serving Emergency Departments in NC, SC and GA. He held leadership positions as medical director in his career. In addition, he pursued training in functional and age-management medicine since 1998. 

Currently, he practices holistic integrative and functional medicine in North & South Carolina at Carolina Holistic Medicine. From 2000 until 2006 he was appointed as co-medical director of the Emergency Department at Liberty Regional Medical Center, Hinesville, GA. In 2007 he was promoted to medical director of the Emergency Department at Marlboro Park Hospital in Bennettsville, SC until 2010.

With over 400 patients being treated in his practice currently, he has around 60 currently on Low Dose Naltrexone (LDN). In this interview Dr Yusuf Saleeby explains his interest in Chronic Lyme Disease and how LDN can help to combat the disease.

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

Dr Julia Piper - 12th Feb 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce my guest today, Dr Julia Piper from Private GP Services in Leicester in the UK. Thanks for joining me today, Julia. 

Julia Piper: Oh, it's a pleasure. Lovely to speak with you Linda and all your listeners. 

Linda Elsegood: Thank you. First of all, let's get to know you, what made you decide to become a doctor. 

Julia Piper: Oh gosh, Linda, that was years ago. I think it was only six years old, and I always wanted to become a doctor.  I remember my cousin was a doctor and I was completely obsessed with how wonderful she was. To do this and want to do it. And eventually, she became a haematologist.

I just never wanted to do anything else. My father said, why didn't you become an engineer? And I could, I just couldn't relate to anything else and that was it really. I mean, people tried to dissuade me over the years for a number of reasons, I guess, you know, to do with the number of hours you're going to have to work, but it didn't quite work, you know, it's like, I'm on my right path, let's put it that way. 

Linda Elsegood: Oh, wow. So where did you study?

Julia Piper: Nottingham University. I chose that because it was very beautiful and green, and I liked being out of doors.  I could have gone to London I guess because we lived in Kent at the time but, I chose Nottingham, and it had quite a different course. You were assessed by continual assessments so that you had exams at the end of every term.

You became a bachelor of Medical Science, so you learned how to be a scientist as well and apart from that it was very similar to other courses, but it was just this, that didn't have to sort of leaving everything to the finals. After two years you really sort of kept on top of things as you went through  

Linda Elsegood: okay. So when you qualified, what path did you take then? 

Julia Piper: Well, I always wanted to be a GP because I loved being out in the community with families and so on. And so I went into vocational training, and I did my own vocational training course, which, in those days, we were able to choose different specialities.

And we did that for two years. And then we had to do a year in general practice. And then I went into a GP practice in Yorkshire where I lived at the time and moved down to Hertfordshire in general practice there and now, and then moved up to Leicestershire, which is where I am at the moment. So I had quite a lot of experience in the NHS, you know, before I, I actually then eventually moved into the private sector.

I mean, it wasn't really planned this move into the private sector only that  I guess I wanted a little bit more time with people and just to have a morning a week where people could just ring me up and say, can I have half an hour? I need more time. Because it was so, you were so stretched for time in the NHS, and so that was meant to be anything else but of, you know, we all know their life changes and evolves, doesn't it?

It changes, and they both send. Eventually, as I say, I went into the private sector and started to see a few patients privately. Interestingly over the years that changed because, I suppose with the regulatory framework changing with the care quality commission, and so on, we had to professionalize our systems and we were the first in the UK to be registered with the care quality commission.

And eventually, I had to make a decision to leave the NHS and some of it, a lot of the locum work I was doing at the time and move totally into the private sector. So I've been doing this now for 25 years, so it's a long time, isn't it? 

Linda Elsegood: Very long time, but it must be very frustrating being a doctor if you have a patient that has a chronic condition, how do you possibly understand all the symptoms and everything they are going through in 10 minutes. 

Julia Piper: Well, absolutely. It's interesting. I think that the way we were trained at medical school and the way doctors, in general, have been trained, up until recently things are beginning to move in different directions.

Now maybe.  but I think we would, we were trained very much to give a label to a disease that that disease has certain evidence-based treatments with drugs or surgery. But what I found as I've moved through life, in particular as we had illnesses in our own family and also with my son's illness of schizophrenia, I have a son who’s has been in incredibly poorly and you know, I, I began to seek other routes to understand what I could do because I felt so frustrated it was like he would give me a prescription on your pad when it became a doctor, and you had to write on it, you know what the medication was or refer to a specialist or to surgery and it seems like we didn't really, we weren’t taught to do anything else. But as I moved into the private sector and I had a bit more time, I think I felt quite guilty that I actually thought I have people coming to see me who are really poorly and there must be more than this. And I think at a very young stage, especially with my sister dying from ovarian cancer, I started to look into alternative routes to heal people and to help to really understand, you know, why both the Chinese chose acupuncture?

I mean. There were clever. They had no science in those days, but they had observed and you had thousands of years of observation and knowledge that, you know, we didn't seem to be taking any notice of. So I trained in acupuncture, I trained in hypnotherapy. And moreover the last few years, I've been training into functional or biological systems medicine.

So that was the root really. It was just frustration. You know that we stopped too soon or we seem to diagnose a disease when it got there, but we didn't seem to do anything to help reduce the risk of developing it. And we didn't seem to do enough when we had made that diagnosis, we didn't have enough tools.

Linda Elsegood: And of course it would seem to me that doctors treat the symptoms rather than the cause, to find the underlying problem, and then the symptoms go away, but you don't actually need to then treat the symptoms. 

Julia Piper: I see. Yes, that's right. I mean, that's really the way we're trained. I think that was my biggest frustration that and I can understand that, you know, once we’ve got a diagnosis, but sometimes medications can be incredibly helpful in the right place but they're not necessarily a panacea, sometimes say, Oh, but you know, we need to have these the tools and understanding this as a body so that we can recognize the causes and the pathway to illness. Because if we don't understand that we a) can’t prevent problems. But b), you know, it's more difficult to turn around some of the symptoms that we see, as you say at the root cause. I agree with you on that one completely.

Linda Elsegood: So how long ago was it when you first heard about LDN? 

Julia Piper: Mmm. Interesting. Low Dose Naltrexone, I mean,  I knew about it for many years actually with those patients that came to see me when I was working in the NHS who were taking Low Dose Naltrexone. So at that time, it wasn't on our list of things that we should be doing.

And so I, probably because I was too busy, you know, seeing so many patients with the NHS, I didn't really look into that further. But I came across it again about five or six years ago. Again, when looking at patients who are chronically ill, studying to a much deeper level with functional medicine and biological systems medicine and not trying to understand what was happening with the immune system because it seemed to me, that it became apparent anyway way to me, but actually much many of our symptoms in our bodies, be it headaches or tummy aches or you know, all the root of chronic illnesses such as MS, Parkinson's disease, where are due to inflammation. And that is so closely tied to the immune system. And that there’s a disruption in our immune system. When I think of the immune system these days, I suppose, I think of it as rather than an army who goes and tries to sort of kill the baddies. I tried to think of it as an intelligence service like MI5? It's very complex, actually working out who is for us and who is against us. Because actually, you know, under different circumstances, you know, that those situations can be, can co-exist right? So I think that's, in terms of, as I began to understand the immune system and look at, say for example, for those people who are au fait with the immune system, the TH1 & the TH2 parts of the immune system and how they become imbalanced, for many reasons and often associated with underlying conditions, depending on how unbalanced they are, you know, it became much easier to understand why a medication such as Low Dose Naltrexone would work and I think, you know, my first foray into that was with people who had autoimmune conditions and whose cellular immunity was not working as well as it might do. And who, probably alongside, developed chronic stealth infection but actually LDN was a very good tool to be able to correct some of the imbalances that had developed.

and as we know there are many, many autoimmune conditions. And as we develop the how-to, how to phrase it, sort of imbalances in the immune system or in the intelligence network that, you know, we need, we need more tools to be able to correct those. But also remembering that as we develop a problem within the immune system, that that really runs alongside some of these chronic stealth infections that then are allowed to develop.

So as I say, what I found with low dose naltrexone, it's a great adjunct. I mean, sometimes it's very good on its own but I find that on its own, the body becomes so complex that no one thing normally is enough to, to get us better. You know, if I've introduced Low Dose Naltrexone, it's on the background of someone that understands the importance of the gut and understands the importance of, you know, having a great diet that is tailor-made to suit them. We all have different idiosyncrasies with our diet, but really we've got to be able to work with our lifestyles and our relationships, our exercise patterns, you know, everything really, as well as having these tools that can help to modulate the immune system and give us that extra bit of support at a much deeper level.

Linda Elsegood: Mmm. Yes. What have patient outcomes been? Could you quote us any case studies? 

Julia Piper: Well, interestingly, I suppose my son was a very good case study in that he had a diagnosis of schizophrenia many years ago. He's 34 now, but he's done incredibly well. I mean, he initially was, had drug-resistant schizophrenia and eventually was switched onto something called Clozapine, and he remains on that for various reasons because we're still working with him. He now on a combination of Clozapine and low dose naltrexone, and he takes a lipotherm glutathione. but along the way, we had, you know, remember when the brain is inflamed, when you have neuroinflammation that our cognitive processes in schizophrenia and in many conditions, but particularly schizophrenia, completely change.

And therefore our perceptions completely change and there are times when the brain becomes fragmented. Schizophrenia is a form of dementia, okay. So that we've managed to turn that around a lot by diet and by diagnosing underlying stealth infections, which were treated. But interestingly, this combination of the medication, which again would be working, eventually, it may be to reduce that, but at the moment, he is stable on the medication. Plus, we initially had IV glutathione and now we're onto the liposomal form, remembering that that enters the cells and can pull out metal such as mercury, which we’ve measured, And we know that that's at the root of his particular problems.  Part of it.  the LDN availability the Low Dose Naltrexone in him has been a great success because with schizophrenia, the microbial activation that happens when you've got cytokines. Cytokines are little messengers produced by the immune system when there's a lot of these around, you know, the immune system of the brain, which is called the microglia, becomes activated and Low Dose Naltrexone, we know, calms that down and it restores the TH1 to TH2 balance. So it means that the tendency towards infection in autoimmune conditions and there are many of them, you know, obviously the inflammatory bowel diseases, Crohn’s disease, rheumatoid arthritis. I mean, there are over 100 different conditions.  And many people may not realize that schizophrenia, for example, it's an autoimmune condition, but they are all helped when we address this TH1 to TH2 balance and increase T regulatory cells. That's a lot happening when we're using this, I've had great success, Linda, in David, my son, but we use it as part of a multidisciplinary approach because we're looking for particular weaknesses, if you like, of, or dials that we can turn in our biological systems that the body will be up to shift with. And when, when we're working on each of those dials simultaneously, at some point, there's a shift and the body is more able to sustain itself in a healthy manner. And I'd like to see more if this biological system of medicine really taught to university, I believe it's becoming more mainstream, I know Bristol university have a scientific department which teaches science underlying functional medicine and I know, a colleague of mine, her daughter's training there. So, you know, things are beginning to shift so that we understand, you know, what it is we're trying to do in modulating and change things at the root level. I think that's good, don’t you?

Linda Elsegood: Yes, definitely. Now, when a patient comes to see you and you've got more than 10 minutes, who obviously has some chronic disease, but they don't know what's wrong with them. How do you go about helping that person when they've walked in, and you know nothing about them? How do you set about treating them? What's the road map? 

Julia Piper: That's a good question. I have a detailed questionnaire, because I really need them to fill out because I like to gain as much information on paper before somebody walked through the door, so it includes the multiple systems questionnaire, for example, I can see quite quickly if somebody is scored like two on the multiple systems questionnaire, then those two symptoms might be incredibly distressing

but I suppose somebody who's scored 165 and like you sort of just gets this. I think I know the questionnaire, I  know what I'm looking for. You know, and we’re asking quite deep questions sometimes to get people to try and think down to the root. You know, what may be their pathway to illness and with functional medicine, we're looking at the detailed question, detailed history. And a road map. They're doing a flow chart as often as someone's life, just to see where these pivotal points are. And when you do that, it becomes much more obvious at what point and what are the triggers and the mediators and you know, the, um, the pathway to wellness, the antecedents, if you like.

So, for example, I mean, I suppose tick bites and the Lyme disease, or even what may turn out to be a chronic infection, for example. We refer to Lyme disease as something which is a chronic and difficult, in fact, the wording and the nomenklatura the naming of these long term conditions now and not so much Lyme as something called M-S. I. D. S. multiple systemic inflammatory disease and infectious disease. So disease syndrome of multiple systemic infectious disease syndrome. And these conditions can become chronic. But if you look at this questionnaire, and you look at the flowchart as someone comes in, you can see how they had, what are the triggers, you know, if there's something recent that suddenly made them present and pick up where your pivotal points are.

And if say for example, in the case of M-SIDS or Lyme, we can, if we can pick up someone lives in a forest or lives in an endemic area of the new forest in the UK, for example, and has had tick bites. Okay. That's not the only thing that's made them ill, but that's a pretty important point that we need to not to miss.

And we asked a lot about toxicology. We ask about—exposures about sensitivities. You know, people have multiple chemical sensitivities. At the root of functional medicine, in the end, two things. One infection and two, toxic insult to the body.

And we want to know what is burdening this person's body that they are suffering from so many symptoms. Almost list numerous systems, too many to this, or you can look at the systems that are going that had been affected that may be producing these symptoms.

So my map, if you like, to gain as much information, particularly about, it's about everything, but it's particularly at the root cause and particularly in a section of the body burden. Does that make sense? 

Linda Elsegood: And how long does it take on the first consultation with a patient to go through.

Julia Piper: Well, I would say we normally try to allow an hour because by the time they've come to see me,  people's often seen in quite a few different doctors. Physical a few little tests. They've been with them and then they've completed this questionnaire, which I find enormously helpful because I can get, I can, I get a really good feel quite quickly.

 With what is going on because there's, you know, once you've understood and you've worked for systems biology for a long time and studied hard, you can start to see where the pivotal points are even sometimes before you've tested. There's that first time.  Well, I'll do a flow chart to see exactly what's been happening over their lifetime, and I can pull it, pull into any tests that may be completely personal to just, you know, pinpoint and a little bit more exactly which dials we need to turn to get somebody better.

So we normally. Sometimes you can get a few little tests done on the day, but I don't normally like to do tests the first time I see someone, because I like to email everybody with potentially a few tests they may need and then you can have a little think about them. And then we can have another little chat often by phone.

because people would sometimes come from quite a distance so I don't want to drag them back. We usually do a little examination at the end of the first hour, and then I'll send them a list of things that I think would be sensible. And then you know, the sort of little few little thoughts about, how, I think the road map is and why we need these tests if any.

The test can be quite expensive, unfortunately. See, we don't always test, but sometimes it can just target you a bit easier. It's quite in order for patients to go back and get the simple tests and that GP of course, and we can sometimes, well since example, I do less just to give an example, less a food sensitivity test now I tend to do the elimination diet and take out things that we know can cause problems. And so it's possible to do things more pragmatically as well. So but that's, that's what I did today. So I'm kind of, I've got to go back and do a couple of emails to patients and, you know think about exactly which tests that we do.

Then when we get the results, we can start with low hanging fruit and then move forward. I'm actually in a situation to see a lot of people, people who are seeing different doctors. So I'm usually, they've had most of the tests done by the way. So my job is seeing where the gaps are and how else we can support, you know, in ways that haven't been considered at that point.

Linda Elsegood: And of course, a lot of people are still unaware that if they've had tests done by their own GP that you are allowed to ask for a copy. You can be charged, but everything you are allowed to have access to everything. 

Julia Piper: And very important people know that they can have a test by the GP  and go back and get them. I can write them down what you need, and you then go and ask them. And it's difficult because some people don't like to go and ask their GP for tests because you know, they, they feel that they might get upset or something. So that they'll only know if you could, I can write them down for you and then I can always write to GP’s if that’s necessary.

I think this is a shame really because a lot of doctors, understandably, I mean, I would have been in the same position if I'd been in the NHS. You know you haven't got time and having the study date, it takes years of study and understanding. When you look through a lens of root cause medicine, it's really hard, you know, because we were trained in such a different way.

But to me, the two can live together well. And the new young doctor at the DePaul side plan, bring out the functional medicine because there's a frustration in the way that they and I do some work at the investor heavy recently in Leicester. And we had a few students, one by one coming in, one sitting with me, and then we had a meeting with them at the end. And I just sat down with them for a day, and I just tell them my son's story, you know? And I said, how much nutrition training have you had? And it's actually zero. Yeah. And it was a shame and I feel so sad and I think to myself, you know, really when I trained, I didn’t know anything about it either, you know, and I say, I think life has changed.

It's for the better. I know we, so, gosh, there were on the internet and wifi, and EMF obviously, we have to limit our exposure, but I feel like there's a lot that's getting better because people understand so much more now. But having said that. I'm thinking it must be very frustrating if you're on an HSG PA traditionally trained these days because a lot of patients that got anything about being ill will know more about it than you do as they come through the door, because they've looked at some of the root causes, and I think it must be very frustrating to be

A doctor in this day and age with such knowledgeable patients because I'm contrary to what a lot of people, and I think Google is amazing. I think the knowledge has got on there, you know? 

Linda Elsegood: Well, we're nearly at the end of the show Julia, but just wanted to ask if a patient goes to the doctor and explains that they've been to see you, would you be happy to work with the GP as well?

Julia Piper: Oh, gosh, yes, very much so. I mean I think a lot of GP’s are very, very busy and you know, again, some people probably feel a bit upset because they feel a bit threatened and that's a shame. You know, it's difficult I think in some cases we have quite a few patients who, especially when their children are involved, you know we have to look after the family and communicate to all agencies because a lot, there's a lot of misunderstanding around children with multiple symptoms and where traditional diagnosis could not be found. Sometimes there’s a lot of pressure put on the families that maybe they're making them up or making the child ill or whatever. So, you know, I do a lot of work with working on explaining carefully what we're doing and actually that is some problem going on and here with the test results. And so we do do that. And sometimes it can be very difficult, you know because people do feel a bit threatened, especially when they don't understand something. Obviously you were working with weird situations and with thought processes,..... mass guidelines.

And so I haven't set up, I mean, B12 injection, somehow we use B12 is something that's actually within the nice guidelines and sometimes you end up, you know, just explaining, well actually you can give this because this person has their neurological condition. And that's what it says in the novice guidelines that sometimes you have got that backing.

But I think the answer is yes, we will work with the NHS under the doctors, and we should be working as a team, and we should be trying to separate things out that sometimes, in reality, we have to, but that's, that's the decision. If the patient, when it comes to a child that has no choice because it's not that time particularly.

Well, you know. Cause of child children in need or child safeguarding. We all compelled to communicate, and we have to communicate. So am I making that up? Yes, I am. I'm just kidding. Basically, yes. And sometimes that's a choice in it, and sometimes there isn't. 

Linda Elsegood: Okay. Now if people want to come to see you, do you have a waiting list?

Julia Piper: Not at the moment no, we don't. We have, I don't, you know, I think at the moment, I don't work all day, every day seeing patients because I tried to keep a balance but we have other doctors here who I work with and we have a lovely coach, health coach and a nutrition coach and a nutritionist who came in and went with us as well.

So, that's the way we do it. So sometimes if you know, I didn't need to do everything, then I can ask them, and I'll tell them certain things. And I find that you know, you can sort of work out what you might need to do in life and then you need that little bit of extra sort of access from a motivational perspective.

She may not change, cause sometimes that isn't so easy, you know, so it's not just me we've got other people that we know that can help as well. Wonderful. 

Linda Elsegood: So could you give us your website address, please do. There. 

Julia Piper: Yes it's https://www.privategp.com/. We rebranded this year before we were very much more like a traditional practice, but I think my daughter said to me, mum, you need to make your website who you are. And so she helped me to, to do that and it was difficult—the time. I remember my father was very poorly. I mean, we lost him in the end.

I found it somehow we've managed to do it despite everything and which we did it. We launched it in May this year. And I hope you like it. So, any feedback would be gratefully received. 

Linda Elsegood: Well, all I can say is thank you very much for sharing your experience with us today. It's been really interesting.

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

Call 01414 046545 today to speak to the LDN experts.

 

New for 2020 LDN radio shows will be available on Spotify and iTunes. They will also be transcribed and added to our website, https://www.ldnresearchtrust.org/

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 appreciate your company. Until next time, stay safe and keep.

Pharmacist Steve Hoffart - 5th Feb (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Pharmacist Steve Hoffart shares his Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Steve Hofart received his Bachelor of Science in Pharmacy with highest honors in 1994 and a Doctorate in Pharmacy from the University of Texas at Austin in 2000. He also holds a board certification and fellowship through the American Academy of Anti-Aging.

In November of 2002, Dr Hoffart saw a need for a more personal pharmacy that could make an impact in the community on a larger scale. Magnolia Pharmacy strives to best work with the "triad". The triad is a strong working relationship between the patient, physician, and pharmacy to solve medication problems and provide real solutions for patients to achieve better health and wellness. 

Cultivating this working relationship has ultimately produced a unique pharmacy experience for each of his patients.

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

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.

Susan - US: Jim's Multiple Sclerosis (MS) 08 Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Susan Garvin from the US, I had the pleasure of meeting Susan and Jim in Nashville at the conference in 2010 this show is dedicated to Susan's late husband, Jim Garvin, who was an LDN user and a huge advocate of LDN. Thank you for joining me today. Susan. 

Susan Garvin: Oh, I'm so pleased. And Jim is watching from above cause he would talk anybody's ear off about LDN and its many uses for ailments that you had. He would talk anybody's ear off. 

Linda Elsegood: Well this is a tribute to Jim, could you tell us about Jim and your life together, how long you were married. 

Susan Garvin: Well, Jim and I were married at age 20 in 1971. We were married to the same people for just shy of 48 years when he passed.

And he was just really dedicated to his family, friends, and his community. Jim was a cable splicer for the phone company he retired from there, after his diagnosis with MS on January 20, 2000, he always said, it's his birthday present. Cause he was born in January, he didn't feel sorry for himself about the diagnosis.

He goes if it's not me. Who else could it be? You know? Jim was diagnosed and actually was told by the doctor that he had Lyme disease, but he got mixed up with another patient. So it was an MS diagnosis. So he retired from the phone company as a cable splicer because of course his many MS symptoms.

And he would find himself ready to pass out, not remember things, walking became a burden for him. We used to call it wall walking where he had to hold on to the walls of the house to get around. At one point he did use a wheelchair because he was unsteady on his feet. 

He, he was taking Betaferon because the doctor wanted him on it. And for a man that was over 250 pounds, just shivering on the bed with flu-like symptoms every other day was pretty hard to watch and see. But he was doing an internet search for other alternative treatments for MS and actually came across some little tidbits of information about low dose naltrexone. So Jim, he decided to call people on the message board that he was searching on. Fin d out that it was really a truly a good treatment for MS and he took a leap of faith and talked the Dr into it, she was not his neurologist who was not really on board but prescribed it anyway, so we got a compounded prescription in the next town over. He came home and tried it and the next day Jim had an improvement in his symptoms of balance. He was able to stand on one foot for balance and so excited as he was, he just called everybody at the doctor's office to just say, thank you.

The doctor was not impressed with that. And after the next consultation, she actually wanted to remove us as patients. So anyway, we had a lot of help and he felt so much better in his symptoms. He was inspired to reach out and tell everybody about it.

So, we have a lot of friends that we met out at the Nashville conference and stayed in touch with them. Jim was known as captain caveman because he would always reach out to people on the internet, and then he called it, go back to his cave. So he was dubbed by Brenda as a captain caveman we had a lot of fun with that.

Jim had, in his own words, he would say he had a turnaround of his symptoms. Have ups and downs and better days and he says he could get out of the bed, make it to the throne room without falling down or having an accident, make it there by himself without a cane or the wheelchair.

And, he did have energy. We had a good life. Jim helped care for a lot of family members. We resumed camping and we pulled a fifth-wheel trailer for camping and visited Arizona. And we just had a very large social world because of that. So again, it gave him an opportunity to teach other people about LDN.

And one of our friends gave him some business cards, printed up with our name, address, and so on. And it said, ask me about LDN. Of course, he passed those out everywhere.

We went to a local viewing of a documentary on low dose naltrexone for Lyme disease. We had a conversation with a man in the lobby afterwards, and he goes on and on. He goes. I had my aunt taking this and, and some crazy man told her about all of this, and LDN and Jim goes, well, you're looking at that crazy man.

We had big chuckles that it comes around and meeting other people that it changed their lives. That really meant a lot to him. We made a lot of good friends that 

Linda Elsegood: I  remember meeting you on the, General Jackson, Mississippi riverboat after the conference in Nashville.

Susan Garvin: Oh, it was so wonderful. Yes. We have a lot of good friends and, Paul and Altha, Brenda was there, Crystal. We have a lot of good memories of those times andwe're just so pleased about how LDN is really changing the world.

We have results that are real now. And when Jim first started it, it was just like, well, maybe it might help you. And you know, we love the testimonies of how it helped people. Jim was on the cutting edge, I would say, of learning and teaching and sharing about LDN as you are.

Linda Elsegood: When did Jim start taking LDN? 

Susan Garvin:  He was started in about January, February, about 2003, I think, 2003 so he was on it about 18 years, without an exacerbation.

And I have to say, Jim saw the neurologist the several days before he passed away, and his neurologist said MRIs taken a few months before, showed there are no changes in your MRIs from the previous and that tickled Jim today because to say that and it was proof that LDN was a life-changer for us. And Jim died of pancreatic cancer, which very few people live through a treatment plan on. But we do feel that it helped his life become meaningful.  

Linda Elsegood: Well, Jim started around the same time as I did then cause I started in, um, December. The 3rd of December in 2003.

Susan Garvin: It's about that. Exactly.

Linda Elsegood: In those days, there were not many people taking LDN. The internet wasn't what it is today either you know. There are more trials and studies being done every month; somebody has done something. There is Facebook now, which there wasn't, or, might've been around, but it wasn't what it is today.

And people sharing information around the world, podcasts and documentaries, conferences, it's all growing momentum over the years. It's a far bigger movement now.

Susan Garvin: Absolutely. I mean, and when Jim researched it, he was in the low thousands on the message board that he was researching on and he sat there and he, he was so funny, had a wicked sense of humour, but he sat there and he said, I felt like somebody slapped me on the back of the head and said. Take a look at this, it can change your life. And again, he did his due diligence and researched that and talked to real people. And again, there is what we, we found that. Testimonies and talking to people made a huge difference. And I think again, Jim talking to other people that we met con a camping trip, after Jim had started this, met up with, people in the Santa Cruz area. And met with them in person and told them, look, I'm a real person. This has changed my life. That person that had MS started, it changed their life also. And you know, you can't take away those things, that life is changed for other people because of you. 

Linda Elsegood: We have 35,000+ people on our main LDN Research Trust Facebook group.

I mean, that is an amazing amount of people, isn't it? I mean, if you put them all in one place at the same time, it would be a huge crowd.

Susan Garvin: Exactly. So, I know that people can take a for so many things, you know? And that that's what's been good for us to know. We share the books, we share testimonies and Facebook.

I mean, having all of those researchers and, and instead of sharing just one on one. We can share it through to the internet and have a larger audience. So we're very proud of the community and how it's grown. 

Linda Elsegood: And patient testimonies are so reassuring and so inspirational for other people who feel, let's say somebody with alopecia who hasn't ever seen anybody with alopecia, let alone know anybody that's taking any kind of treatment. You feel very isolated and on your own, and it really does help to connect with other people who are in the same boat as you, who can talk to you and help. It really does make a big difference.

Susan Garvin: Yeah. that's true. So it's like we are here we're a purpose. And I just think that Jim was definitely one that was blessed. On LDN, he had an almost complete turn around of his symptoms. He still had moments, you know, fatigue and heat intolerance, but being able to take care of yourself and not be a burden on somebody, that was huge to him, that he didn't ever want to "be taken care of" by someone. He was active till the very end. Well that's good to hear, isn't it? That's the time when you think, well, yeah, I've had a good one. Yeah, 

Linda Elsegood: He was amazing. So did you have children, 

Susan Garvin: Yes. We had two,. Our son died about nine years ago. And then we have a daughter that is a teacher and she's taking a two year teaching position in Hong Kong. And we'll be home for her Christmas for a visiting family. So we are totally excited about that. My mother, that's going to be 91, lives with us; we have three dogs at the moment and, mother still goes camping with us. Jim is one that really helps take care of my mother. He gave up three months of our life to go take care of her in Arizona after my father died and invited her to live with us. He always said, if we didn't have her, he wouldn't have me. And he just told me every single day that he loved me. And he did that by showing love to others. 

Linda Elsegood: Do you have any grandchildren?

Susan Garvin: Yes, I have two a 24-year-old beautician, granddaughter, and a 16-year-old, uh, still in high school. So, they'll be in for Christmas probably, and love being a part So, I have the grand dog, so the grand dog is staying with us through my daughter's time in Hong Kong. It's a loving schnauzer and we get to visit and cuddle with her along with our other two dogs. They want to be on your lap and cuddling. So it's like a puppy pile. 

Linda Elsegood: Dogs are such great company and the way they follow you around. 

Susan Garvin: Hmm. They are. And they loved Jim. Jim could teach him anything and they always wanted attention from him. So they were very comforting to him. Cause you know, there were times in the first part of his diagnosis, he'd just be sitting in the recliner, but he'd be laying back and have our little dog laying on his chest. And you know that that was his girlfriend. You know he would have a girlfriend on his chest or a little dog.

And those are cute pictures I keep in my mind. 

Linda Elsegood: So what kinds of dogs do you have. 

Susan Garvin: My oldest is a dachshund and Queensland max. She's got black spots and grey ticking. We have a white Vishaan that's practically toothless cause. she's lost her teeth. And then my daughter's dog, the miniature schnauzer. So a pretty energetic group considering. 

Linda Elsegood: Well, it's been amazing speaking to you, Susan, and thank you so much for sharing Jim's story. You know, it's nice to be remembered for all the hard work that he did and to, you 

Susan Garvin: Well, it's continuing on. I'll be a part of this community forever enough, for I know how life-changing it is for each one of us.

Linda Elsegood: Well, thank you so much for having been our guest today. 

Susan Garvin: Well, thank you, Linda. I look forward to seeing you in person on another future date. 

Linda Elsegood: You can bank on it. Thank you, Susan. 

Susan Garvin: Bye-bye.

Linda Elsegood: [00:21:24] 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 their idea of the show. And thank you for listening.

Any questions or comments you may have. Please email me at Contact@ldnresearchtrust.org I look forward to hearing from you. Thank you. Joining us today. We really appreciated your company. Until next time, stay safe and keep well.

 

Misty Rushing, CRNA - 25th Dec 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sherry - 1st Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today. I'm joined by Sherry who uses LDN. Thank you for joining me today, Sherry. 

Sherry [00:01:07] Thank you for inviting me. 

Linda Elsegood: [00:01:10] Could you tell our listeners what is it you take LDN for?

Sherry [00:01:16] I have the autoimmune disease, lupus. I have degenerative arthritis and fibromyalgia. These are three of the main concerns in my health, which has caused chronic pain. And it's really brought me to a place of disability, not being able to work and to enjoy life. And my health just kept deteriorating. And so a few months ago I was introduced to the alternative medication of low dose naltrexone. 

Linda Elsegood: [00:02:08] Can we just stop there for a minute? Let's find out first of all, before you found LDN, what was it like, and how long did you have all these conditions? I mean, have you had them all your life? Have they only been the last few years? Start at the beginning of your journey. 

Sherry [00:02:28] probably about 25-30 years ago I started having issues of where I would get a rash all over my body and then begin just feeling really bad and tired, and everything on my body hurt. It would happen maybe two or three times a year, or if I had gotten a virus or a urinary tract infection, I would get these symptoms. And it took several years for it to progress to where I was having these symptoms every month, every two weeks. And it took quite a while for doctors to diagnose the condition as lupus. And it is a progressive type of illness, not like it happens once and then you get better.

It just continued to get worse as I aged, and I developed more degenerative arthritis in my spine and my hands, which also inhibited me from being able to do a lot of physical activity. I was a nurse and you use your hands quite a bit. And that became very difficult to do. And then I started with the chronic muscle pain and fatigue of fibromyalgia that impacted more of my lifestyle. As time went on, I ended up taking early retirement from a job so that I could rest for a little while, and maybe reduce the stress level in my life to see if that would help. I found a job that I could do sitting down and using my computer, but still having to deal with the symptoms of chronic pain, fatigue and then flare-ups from any types of stress or viral illnesses or bacterial illnesses. So it really inhibited my life quite a bit. In 2018, I was awarded a disability determination, and that same year I couldn't do my job anymore even though it was a sit-down job. I just got to where I couldn't do full-time work. It just affected every part of my life, even my extracurricular activities within the community or with church or friends. 

I went to see a rheumatologist, and a couple of years ago and a new drug called Benlysta came out that was the first, uh, treatment for lupus; and I've been getting infusions every month and that has helped tremendously. It's cut back on the number of flare-ups I have with lupus. But degenerative arthritis and the fibromyalgia still had a great impact. And it was to the point where I could not even walk a mile. Or if I had to go to the grocery store and I had to walk around the big shopping centre, I'd make sure to hold onto the cart if I had pain in my back and my legs, and it would just make me have to sit down or, at times lie down. If I had family meals, a holiday celebration where I would do a lot of food preparation, after a short period of time, I just had to go lay down. The pain was just so tremendous in my body because of arthritis.  

Linda Elsegood: [00:07:53] can I just ask you, Sherry, how difficult was it to be diagnosed with fibromyalgia because it hasn't been recognized as a condition for that many years?

Sherry [00:08:03] That's very true. It is difficult, because as far as being recognized, and even lupus, it is the great disguise there. It was hard for them to finally put a diagnosis on me. And you find in your mind that you question whether you are going crazy or something, and what's going on with me? I know I have these feelings. So you finally find other people who are experiencing the same thing you are, and you realize you aren’t the only one that felt that way. And so yeah, it is a very difficult thing going through a disease process that is not truly recognized. 

Linda Elsegood: [00:09:28] And then you, of course, we're told about LDN. I mean, how easy was that to get a prescription and have it filled.

Sherry[00:09:38] That was another story. I had been referred to pain management because the doctor said, well, there's nothing else we can do for you. Go to pain management. And that was getting injections and getting on opioids. For some reason, it did not work on me. I guess maybe I'm just different. But the steroid injections didn't work. And as part of pain management, you also are sent to a psychiatrist to be able to find better ways to deal with chronic pain. And it was through that - that psychiatrist had dealt with other patients whose opioids and injections and all did nothing for the pain. And she said, they were put on a drug, it's off label use, but maybe this will help you. And so I started to do some research on it and talked with my pain management doctor asking if she knew about this use of naltrexone. She had never heard of it before. Then I talked with my rheumatologist and he said he had heard of it, but he's never used it for any of his patients, but he was willing to try it on me. And luckily there was the LDN Research Trust website and all the information that's for providers and patients.  He was able to be directed to that, and as he's educating himself with the use of this drug, he sent my first prescription to my pharmacy. I had no idea that it had become compounded, and my pharmacy didn't know either. So they actually made a mistake and gave me 50 milligrams of naltrexone. I'm thinking it was because I was on opioids at one point. So that was a farce. And then I finally found a pharmacy that did compounding for naltrexone, and that pharmacist was extremely helpful. He directed me to some more LDN research, information so I could educate myself and become part of the lupus support group of those who use LDN. He was an immense source of education and comfort, so I finally was able to get the medication through a compounding pharmacy in our area. 

I even talked with my primary care physician, telling her about the experience that I've been having with low dose naltrexone, and she says, this is what we need to hear. We need to hear about treatments like this, and they're not hearing it. And so anyway, my little part, I'm sharing the website information.

Linda Elsegood: [00:13:30] at what dose did you start on when you started, Sherry

Sherry [00:13:34] He started me on 4.5 milligrams right away, so I was taking that at bedtime, and immediately for the first couple of weeks, I saw no difference in the pain. I did start sleeping and dreaming, and I hadn't dreamt in quite a while, and sleeping through the night was very restorative.

It was about maybe six weeks of taking the 4.5 milligrams at bedtime that I started noticing in the day time that my pain level was decreasing. It wasn't as bad. It was tolerable. I had been where I would be from a six to eight pain score level every day, and at times more when I had to overdo things too much on my feet, or too much physical activity. I just had to go to bed and there was nothing that really helped me to take the edge off. After about six weeks, I noticed it's starting to work for pain and I was just full of joy about it. I just felt new. I felt renewed. My pain level about six weeks into LDN has gone to a three to a five every day, and that's for me, that's tolerable. That works. And I'm just overjoyed with that. And because of that, I've been able to walk for more than two miles, and hold on to a thing, or lie down, or use some other pain medication to help take the edge off. Those were the first experiences. I was just really just thrilled and told my doctors about it and they were extremely happy about it. Yeah. It set a whole new outlook on life. I don't expect that I would be 100%  a new body, a new person, but my life is definitely tolerable now in my body. 

Linda Elsegood: [00:16:49] And do you have a virus? Would you like to explain what happened when you had a virus? 

Sherry [00:16:57] Yes. It's now six days ago, I started having a respiratory virus, the cough, the congestion and all that. Usually, with lupus, those are triggers to a lupus flare-up. I didn't really know what was going to happen, but when it triggers a lupus flare-up, I get a rash over my total body and my skin becomes very painful. I have increased muscle and joint pain, fatigue, headache. It's not very nice.  It's bad enough you're not feeling well because you have a virus, then you have that on top of it. So six days ago I started with this virus then two days later I woke up and I had a lupus rash all over my body, the same type of experience that I would have prior, with the pain and fatigue, and all that went along with it. I called my rheumatologists and I reported to him what it was. Usually, he would prescribe a taper of prednisone over one to two weeks and my symptoms would be gone, the rash would be gone. And when the rash leaves, 10 days later my skin starts to peel off. The prednisone helps with the pain and the fatigue, but it usually takes about one to two weeks for me to get through an episode of a flare. 

I called my doctor as I was beginning this flare up and he didn't want to start any prednisone. He wanted to be sure that I did not have any type of infection, and afraid of it suppressing my immune system and then the virus really taking over. I agreed and I said I will call back and be reevaluated, so no prednisone next time. And then the rash and the fatigue and the pain exacerbated. And by that evening, ready to go to bed, I took in my LDN, as a backup.  We decided to give me the doses of one-milligram capsules so I could play with the dose and see if I could have a good reaction on just three milligrams of naltrexone, or if I really needed five or six milligrams of Naltrexone tab That's when I found that when I was on the three milligrams I had more disruption in sleep and more discomfort in my muscles and joints. So I went up to five milligrams and I was taking that pretty regularly and I was feeling good. And then I got the virus when I was on five milligrams of LDN. So when the flare started, that night when I went to bed, I took five milligrams of LDN. And when I woke up the next morning, my rash was almost gone. I mean, I could barely, barely notice it. I mean, it was just a shadow of it. And as the day went on the pain and the rest of the rash were totally cleared up. All the symptoms were diminishing. I still had the cold symptoms, cough and stuffy nose and all that, but the lupus flare was fading without prednisone. And that just is another surprise, to be able to do that without having prednisone. It’s just a miracle that that could happen. And every night I still continue with the five milligrams of naltrexone.

And every day, the lupus symptoms, the flare-ups, have diminished. I'm still working through the virus. You could probably tell, I sound probable still a little congested, but to me, it's a miracle. I  called and reported to my doctor and said, I know it's hard to believe, now I don't have the symptoms anymore and I didn't take any kind of prednisone. So that's where I am today. 

Linda Elsegood: [00:23:47] Well, What, amazing story. Truly truly is, and I'm sure those people listening who have lupus or degenerative arthritis, fibromyalgia is going to be so inspired by you, and thank you so much for sharing your story. Sherry. 

Sherry [00:24:08] Oh, I appreciate you giving me the opportunity. I hope this can help someone. I know it's so discouraging for some of these diseases, not getting the help you need.

Linda Elsegood: [00:24:21] Well, thank you for having been our guest today. 

Sherry [00:24:25] Okay. Thank you very much. 

Linda Elsegood: [00:24:29] 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, bandwidth, phone lines, and phone calls to be able to continue with our Radio Show.

And thank you for listening.

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.

 

Judy - 22nd Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.