LDN Video Interviews and Presentations

Today, I had an insightful conversation with Michelle, a physician assistant, who recently opened her own integrative health practice. Michelle focuses on optimizing her patients' health and treating each person uniquely, addressing issues such as sleep quality, thyroid function, and hormone balance. She also prescribes LDN (Low Dose Naltrexone) for many of her patients and has seen positive results in improving their overall well-being. Her approach to personalized care and empowering patients in decision-making has been rewarding and successful. 

Sarah Zielsdorf, MD, MS - Hashimoto's Thyroiditis - 2022 Conference (LDN; low dose naltrexone)

Elizabeth Livengood, NMD - LDN and Thyroid - 2020 Conference; Bahamas (LDN, low dose naltrexone)

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Today we're joined by pharmacist Dr Dawn Ipsen who's the owner of two pharmacies in Washington State, Kuslers Pharmacy and Clark Pharmacy. Could you tell us what it was that inspired you to become a pharmacist? 

I knew early on as a high schooler that I wanted to have a doctorate degree in something and was sort of a little bit torn between pharmacy and optometry and with long heartfelt discussions and soul-searching I became a pharmacist and very early on in my career not only was I trending towards being a pharmacist but I had an opportunity to intern at a compounding pharmacy and just absolutely completely fell in love. It was the art and the science and the way of being able to help individual patients in manner of which no other pharmacist in my area was able to do so, of providing very personalized therapies. I was able to really listen to patient needs and work with their doctors, to formulate the exact therapeutic tool that they needed to improve their quality of life. That is really what has driven me in my career. 

When did you open your first pharmacy? 

I had been a pharmacy compounding lab manager for about 10 years for the Kusler family. When they were ready to go do other things in their life I was given the opportunity to purchase Kusler's Compounding Pharmacy. It had been a pharmacy I had worked at as a staff member for 10 years and took over as the owner and I've now owned that pharmacy for almost 10 years. In January it will be 10 years. That was my first pharmacy. I was doing all my good work up at my Snohomish Pharmacy and suddenly had a random phone call on a Friday afternoon in which the Clark family was looking for a new owner for their pharmacy. They were ready to retire and go do other things as well. I've also owned Clark's Compounding Pharmacy down in Bellevue Washington for six years. I've been an owner for almost 10 years total and have had multiple locations now for about six years. We service not only the entire state of Washington but we also work within nine other states as well. Our boundaries go quite deep and it's a really great way to help all types of patients all over the nation. 

What would you say is the most popular form of LDN that you use the most? 

I would say primarily we use the most customized strengths of capsule formulations of low dose naltrexone (LDN). It gives patients really great consistency yet opportunity to get the doses titrated in appropriately where they need it to be. What's really great about how we approach our making of capsules: we use hypoallergenic fillers. We're also able to work specifically with patients who have sensitivities. We can customize what that filler might be and I think that's really what sets our pharmacies apart and why doctors and patients choose to work with us. We are experts in autoimmune and chronic inflammatory diseases and therefore we're very used to working with patients where the normal just isn't what they need and isn't what's best for them. We can customize that to be appropriate for them. Along with capsules of course, we are able to do transdermals. That's really popular in pediatrics, especially for patients with an autism spectrum disorder. We are able to make flavored liquid tinctures of it so patients are able to use various small doses to titrate up doses. We also make sublinguals. I would say capsules are pretty popular for us. 

What kind of fillers are you asked to use? 

Most of the time I will steer a patient towards microcrystalline cellulose (which is a tree-based cellulose). It is very hypoallergenic for a lot of patients. However, some patients know they have tree allergies and those patients primarily prefer rice flour. I do have a couple of patients, but very very rare, that actually do better on lactose filler. They tend to not be my autoimmune patients. They tend to be patients in the chronic pain spectrum area. We have also worked with other fillers, like tapioca flour. We can be very customized into our approach of how patients need it. I've got one patient that comes to mind that loves magnesium as their filler and that's very relaxing for their muscles. I've also seen probiotics being used. There is not one right answer to how we do things. We are that pharmacy that is able to have a conversation with a patient. We talk about what their needs are and customize it based on that approach. 

From the prescribers that you work with, do you have many consultants that you fill scripts for? 

We definitely do. That's also kind of a little side thing that I do. I've always been very passionate about teaching. I'm on faculty at University of Washington School of Pharmacy and also Bastyr University, which is one of the top naturopathic doctor schools in the nation. I teach there during summer quarter. I teach nationally to providers continuing ed-based content that is often LDN in nature, or ties into LDN. Especially with autoimmune and chronic pain and chronic inflammatory conditions. We consult a lot with doctors. I probably work with three or four hundred functional med type providers on any monthly basis, even on being able to customize therapies for their patients. We are really big in the post-COVID syndrome arena of helping patients that are really struggling and LDN. We're finding it pairing quite nicely in that condition as it's very inflammatory based. We work quite heavily within the MCAS arena for patients who have a lot of mast cell instability and need other therapies. LDN is one of the tools that is used quite frequently by those types of providers and for those specific kinds of patients. 

Do you work with any pain specialists, dermatologists, rheumatologists, gastroenterologists? 

We do. Honestly, I’m quite proud of our little Seattle area of Washington because we do have MDs that are pain specialists that are now really turning towards using LDN in their toolbox of things they have available for patients. They're getting quite savvy at it. They're doing a really great job. It is super exciting. I have some dermatologists. I consult a lot with my functional med providers that are seeing dermatology conditions like psoriasis. I have an email I need to work with a doctor on after this to help them with this patient with a psoriasis case. We are seeing it in the GI world as well for Crohn's and irritable bowel disorder. Those chronic inflammatory conditions. I would say the MD pain specialists are really turning around over here. Obviously with the opiate crisis that has occurred in our nation I think most doctors of any type of credentialing or medical training or experience are quite interested in what LDN is doing for their communities and what opportunities it affords for patients who are trying to make sure they aren’t addicted to opiates but yet have something to improve quality of life and their day-to-day living. Low dose naltrexone has been an amazing tool for that. 

I'm always excited to meet different LDN prescribers and nurse practitioners who are providing lots of scripts. When you get an MD or a DO that is prescribing LDN and it is completely out of their comfort zone, I always think yes, you know we've got another one on board. We're making it right. We're getting it. MDs are already working outside of the box. That is normal for them to look into LDN; it's not normal for MDs to look at LDN but as you know, I've interviewed so many people and so many MDs when they have a patient that they can't help, and fix their issues. They've tried everything and they feel as if they've failed this patient, and then they try LDN. Once they have had amazing results with the first person it's then so easy for them to look into prescribing, not only for other patients with that condition but for any autoimmune disease, chronic pain, mental health, etc. 

I mean it's really amazing and this is where people like yourself come into play. The hand-holding with doctors because a lot of them haven't got time to do the homework. They're very busy and they need somebody to tell them exactly what it is, how to prescribe it, what to look for, what to do and have somebody on hand to say, like you said, I've got a patient with psoriasis. What do I do? Can you help me? That is the way to get more doctors involved is the pharmacist doing the hand holding. 

There is a local psychiatrist in our area that works with younger adults with substance abuse disorders and teenagers that are having a lot of trouble with mental health. I had an opportunity to get him thinking about LDN and his patient population. I love when I get to reconnect with him every few months because he just raves He finally has a tool that actually does something. He felt the antidepressants and all these other things were not really fixing any of the issues or fixing the symptomatology. We still have the same abuse issues, we still have the same addiction issues and we still have the same levels of depression and suicide risk. But with LDN he's finding that he's actually causing positive change in his patient population, and that's the only thing he really changed within his practice. We're really affecting the health of our community in a very positive manner with something that's really safe and low risk and not expensive. It doesn't get any better than that. It's the best compliment I could ever have. 

It's really nice when patients take all their information to the doctor. Once you've got a doctor really hooked on prescribing LDN they can change the lives of hundreds of patients. Dr Phil Boyle uses LDN in his fertility clinic. He also uses it in women's health for things like endometriosis, polycystic ovary, painful periods, heavy periods. Right across the board he uses LDN. He gets patients coming to see him with women's health problems who also have Hashimoto's or long COVID etc. I refer to his work all the time. He gets questions a lot from local providers such as we have somebody who wants to become pregnant, or they did become pregnant and they're on LDN and they want to know what the standard of care is and can we continue, and what's the risk and benefit are. It is so great to have providers like him out there that have been doing this work for so long that we can very confidently share those case experiences and history of using the medication long term for those patients. 

There have been so many of our members who were skeptical about using LDN during pregnancy. Doctor Boyle is always very generous with his time. I will send him details and he will answer the patient and share his experience. You know we used it once up until birth rather and breastfeeding, etc. We have those people who have done two or three pregnancies using LDN who are happy to talk to other people. This is my experience with 20 years as the charity next year, which is totally amazing, but I’ve found that word of mouth and with the education it is just spreading. 

Linda, you've done an amazing job with the LDN Research Trust and I thank you for that. You have made the Research Trust, its website, resources and its books into a trusted referral point that I can use with our doctors and our patients who are wanting that next level of information beyond what I'm able to say to them. They want to go see those studies themselves. They want to go read the book themselves and I know that without a doubt I can send them to your resources for them to receive complete in-depth and correct information. Thank you Linda. You're doing amazing things and this is all because of you. 

How can people contact you? 

We have two locations in Washington State. We have Kusler's Compounding Pharmacy in Snohomish Washington and the website there is www.Kuslers.com; and then we have Clarks Compounding Pharmacy in Bellevue Washington. That website is www.clarkspharmacywa.com. The WA stands for Washington. We are happy to help patients all over and talk with doctors that need guidance and assistance in learning more. I love being an educator and I love being here to support my community. 
 

Connie - US: Hashimoto's (LDN; low dose naltrexone)

Kate was diagnosed with Type 1 diabetes at age 7. Her diabetes and insulin needs were not changed on LDN. After treatment for Lyme disease with antibiotics and herbals, LDN gave Kate relief of her remaining symptoms. Finding LDN was like the magic bullet. Her Hashimoto's antibodies went up on LDN when the dose was too high. She is still working to find the right dose for her Hashimoto's symptoms, with headaches being her main side effect of a too-high dose.

Linda Elsegood: Welcome to the LDN radio show brought to you by the LDN Research Trust I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Linda: Today we're joined by Kay from the United States who uses LDN for Hashimoto's Thyroiditis and fibromyalgia. Thank you for joining us today. Kaye. Thank you for having me. So could you tell us how long ago was it when you first got sick?

Kay: Honestly it was probably 40 years ago. I'm 58 now and when I completed high school, I started having symptoms of thyroid problems. So it was it was a very long time. So what did they do at that time, such a long while ago? They told me it was anxiety and they totally the doctor totally blew it off and they never did any sort of testing. They never did blood tests. They didn't do an ultrasound; they didn't do anything. Even though I had a constant sense of a lump in my throat and issues with sleeping and anxiety, and quite a number of issues that come with thyroid problems. And it wasn't until after I was married and I had two young children and I was working full-time that I just simply got to the point where I just felt like I couldn't function. And I went to the doctor. And he finally took it seriously. That was a different doctor, but unfortunately my labs for my thyroiditis all they ran was simply the TSH and they said, oh you're perfectly fine and they diagnosed me with fibromyalgia at that time. So I was kind of stuck with that diagnosis for a period of time as well, without any real good answers at that time.

And that kind of progressed, and it was probably another five years or so before anything more significant came out of that. I noticed one day a very large lump in my throat and went to the doctor, ended up with a surgeon and had my thyroid removed, and they diagnosed me as having Hashimoto's. I had two different types of growths on my thyroid and a very large cyst, and the surgeon actually said that it was the most diseased thyroid he had ever seen, and he was absolutely convinced it was cancerous. It turned out not to be, but it was clear why I had been so ill and having so much difficulty in functioning at that point. 

Linda: Wow. So what did they put you on once they removed the thyroid? 

Kay: They simply put me on just a T-4 only medicine and I felt absolutely terrible, and I literally thought that I was going to die. I thought the doctors were going to let me die. At that point my children were probably 14 and 16, and I simply just hoped and prayed that I would live long enough to see them graduate from high school. That that was how bad I felt.  I could I could hardly function. I was continuing to work full-time because I needed to, but I did not have any emotional capacity to deal with raising teenagers and having a husband and living life. It was just incredibly difficult and I just started googling and looking for answers, and thank goodness for the internet these days, right, because you know we can find stuff we couldn't find before So, I ended up at a doctor that was more holistically minded, and that doctor put me on Armour thyroid, so I had the T-3 and the T-4, and I started to feel like okay, I can live now; I can start to function. But I was still having a lot of issues, a lot of fibromyalgia pain.  I was having terrible insomnia. I was on multiple medicines to sleep. Dealing with a lot of anxiety, IBS, TMJ; I've got a laundry list of acronyms that I was dealing with. I came upon low-dose naltrexone myself, and I approached my doctor and asked her if she would prescribe it and she said yes, that she had a number of patients on it and she was happy to prescribe it.  So I kind of got lucky in getting a prescription for it. 

Linda: How did it affect you when you first started? 

Kay: When I first started taking it, really the only side effect I had was just vivid dreams. And I think I started it I 1.5 milligrams. That was fine. Did that for two weeks, bumped to 3 milligrams. That was fine, and did that for a couple weeks. Then when I bumped to 4.5 milligrams, I started to have some of the vivid dreams, and I bounced back and forth between 3 milligrams and 4.5 milligrams for a couple of weeks until I could just consistently stay at 4.5 milligrams.

Linda: And how long ago was that?  

Kay: That that was about 12 years ago. 

Linda: Well so you've been on LDN a long time.  

Kay: I have been quite a while, and I'm still on it. 

Linda: And do you have any thyroid issues now at all?  

Kay: I'm still dealing with some issues. About 4 years ago I ended up exiting a very toxic marriage, and doing that helped tremendously in reducing the amount of stress and anxiety in my life. I ended up changing to a different doctor, who really encouraged me to change my diet dramatically. So I eliminated all grains and all sugar, and that has helped tremendously. Reducing the stress, getting out of a toxic environment is huge. Just the emotional stress that happens takes a very physical toll on our bodies, and I think that often we underestimate the impact of it. And so for me, low dose naltrexone is part of a bigger package of things that I do to take care of myself. It wasn't the magic elixir that solved my whole life problems, because I had a number of things going on in my body, and a number of things going on in my life that needed additional changes to really create an impact.

Linda: What about the fibromyalgia pain? Is that under control? 

Kay: It is really under control. I'm struggling with a torn rotator cuff, and so another problem like that, it still throws your body off. As you age other things start to go awry as well. But no as far as fibromyalgia goes; no I don't really have any fibromyalgia pain. In fact three weeks ago, I went on a hiking trip with a friend and I had no pain and no stiffness and no soreness after hiking like 15 miles a day through fairly rugged terrain. 

Linda: So that speaks volumes, doesn't it? 

Kay: It does speak volumes.

Linda: Now I probably know the answer to this question because you spoke about diet, which was going to be one of my questions. But because your doctor was looking at your whole body, not just your symptoms, did she recommend supplements for you to take as well?

Kay: This doctor is a male; it's different. He also was willing to prescribe low dose naltrexone, and he knows what supplements I am on, and he has not necessarily recommended that I change them, or that I add to it. I am on a number of supplements.

Linda: Do you take probiotics?

Kay: I do take probiotics. I also take magnesium, Vitamin C, Vitamin D3 and K2. Those are kind of my staples.

Linda: Yes, when I ask doctors what supplements they recommend, probiotics is always up there as the top one, as is Vitamin D. You're doing remarkably well. I can't believe that somebody who must have been like 14 at the time, had all these problems, and they were just swept under the carpet. But so many people tell me that years ago, and not that many years ago either, that it's all in your mind; there's nothing wrong with you; it's all in your mind, or you're depressed and give you antidepressants rather than finding out why you've got the symptoms, finding the root cause. I'm just so pleased that you have managed now to get your life back on track where you feel you're in control and you can enjoy a good quality of life 

Kay: Honestly I feel better now than I did 20 years ago. I have I have no anxiety anymore; I used to have a lot of anxiety. I had issues with sleeping; I am off all of my sleeping meds; I only use melatonin now for sleep. I used to live on over-the-counter pain medicines, Tylenol, ibuprofen; I only take them very very rarely now; maybe once a month rather than three times a day or more. Just so many things that have resolved.

Linda: That's amazing, because all the medications that you can take, some of them are quite toxic and also all medications carry the risk of some side effects, and the more medicines you take, the higher the risk of getting side effects, and then you end up taking the magic pill to combat the side effects that the original pills have made. So to actually cleanse your body of all of these other medications that you're taking, even though you're 20 years older now, you said you felt better; your body is 20 years older, but you're still feeling better than you did 20 years ago. That's amazing, isn't it? Apart from your shoulders - hopefully that will heal soon. How did you hurt it?  

Kay: I had a bone spur that tore the supraspinatus, which caused too much stress on the infraspinatus and so that one also had a tear, and kind of the whole the whole shoulder system just went downhill. We're still working on that. 

Linda: So you just want to rest it.  Are you, as much as you can? 

Kay: Trying to rest it, and then also exercise it and strengthen it, it’s working well. 

Linda: Well that's it: if you don't use it completely, you lose it. Well thank you very much for sharing your story with us today, Kay. Very remarkable. You're an amazing lady. 

Kay: Oh thank you, thank you. Now I just wish everyone well who tries the low dose naltrexone. Just don't underestimate the impact of changing little things in your life, because lots of little things add up to significant differences.

Any questions or comments you may have please email me, Linda, at linda@ldnrt.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.
 

Linda Elsegood: Welcome to the LDN radio show brought to you by the LDN Research Trust I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Today I'm joined by Tracey from the US who initially took LDN for Hashimoto's thyroiditis. Thank you for joining us today, Tracey.

Tracey: Thank you for having me. 

Linda Elsegood: So could you tell us how easy was it to get your initial diagnosis of Hashimoto's?

Tracey: It actually was not easy. After I had my second child I could just tell, even though I had a child, the fatigue was extreme, hair falling out, inability to lose the baby weight, and just a lot of different things. So I went to a primary care. I did get tested and they did say I was hypothyroid, but it took until 3 years later until I went to a naturopath for them to actually test, which it's kind of crazy, because it's really just one test. They tested my antibodies and realized I had Hashimoto's. Because I got that diagnosis with the naturopath, I stuck with that office, because they seemed to be working better with me.

Linda Elsegood: Okay, so what was the length of time it took from when you had your child to having the actual diagnosis?

Tracey: I was diagnosed with hypothyroidism originally within six months, and they gave me Synthroid, which really did not help very much. I was still exhausted. Maybe it helped me about 15%, and I just kind of struggled along with that for about 3 years. I went to an endocrinologist. Same thing. They just said just stay on Synthroid. And finally, I moved, and I went to a naturopath. They did the test, realized it was Hashimoto's, and then also switched me from Synthroid to natural desiccated thyroid, which changed my life. It really did. I felt like I wasn't hypothyroid or Hashimoto's anymore. I still struggled a little later with some fatigue, but it helped me about 80%. Then, I guess it was around 9 years ago, my naturopath said there had been studies - the office really kept up with trends and studies - and they really researched a lot, which is another reason I like going to a naturopath; and they told me about low-dose naltrexone, LDN. I had not heard of it, and most people at that time, because it's a while ago, had not heard of it. He gave me some research. I did some of my own research, and I started taking it. I started taking it about five years into my hypothyroidism, so it was about a year after I got diagnosed with Hashimoto's. And I titered up, and it made a big difference within literally just two months. I know they say it can take longer, but for me I noticed within two months. 

Linda Elsegood: So it was like you say, a long while ago now, but did you have any side effects? Can you remember when you started? 

Tracey: Well I know some people take tiny tiny amounts and they titer up really slowly. I split one 4.5 mg pill into four, so I took a quarter of that for three or four days, and then a half for three or four days. I really didn't have any side effects. I think the first night I had a little insomnia, and the first three days some unique dreams. And that's really it. I was one of the lucky ones that I just didn't have too many side effects at all. I had energy within one or two weeks. I felt extra energy in the day, which was great, because fatigue was one of my bigger problems. So I never ever had really any bad side effects. 

Linda Elsegood: Wow. So, comparing your life now to how it was before you started LDN, how would you describe it? 

Tracey: It's just much better. Fatigue, as a lot of people know, can really be debilitating. It can just affect your whole day. I used to be exhausted from about one o'clock in the afternoon until five, and I would be in the middle of working, or when I was younger taking care of my kids and working, so I had to stop for three or four hours and sit down or lay down. I don't have to do that anymore. I've just been staying on the 4.5 all these years. Unfortunately, last year I got diagnosed with seronegative RA. At least that's what we think it is, and so I am looking at increasing that to the 6 mg because there's been studies since nine years ago, of using it for RA in a slightly higher dose. So I'm just starting to play around with that. 

Linda Elsegood: And how's it making you feel increasing the dose?

Tracey: I just started the 6 mg about two weeks ago. I don't notice a huge difference, but I do know my doctor told me that sometimes to change RA with anti-inflammatory reasons, it could take a month or two. So I'm just gonna keep going with that, because there are some other people with RA who I talked to that are doing really well on that dose. I only take it at night. I know some people dose twice a day, but I feel like my body needs the 18 hours to cycle through the whole LDN cycle.

Linda Elsegood: Okay, so are you following a regime from your naturopath, on diet and supplements as well? 

Tracey: Yes, I've been taking so many supplements for years, probably the typical ones that most people take, you know the turmeric and black seed oil, B vitamins, D, C, all of those. I also take resveratrol and glutathione just for liver cleansing, and I do I did the ALP diet when I got diagnosed with the seronegative RA. I started the AIP diet, and after the 30 day elimination, I moved into basically a paleo diet. No sugars, processed food, stay away from gluten. And that definitely helps me, about 20 to 25 percent the diet alone. I feel a combination between LDN, my supplements, my diet and I do take one other mild RA drug, first line drug hydroxychloroquine, so maybe between all of them they all work around 20 percent. I can get back to my normal self.

Linda Elsegood: How did you know you've got RA? Were you getting lots of joint pain? 

Tracey: Yes, it kind of came out of the blue. I do know that people that have one auto inflammatory disease are prone to get others. It really was out of the blue. One day for years, working out five, six times a week, hiking, yoga, etc, at the gym. Then I started to feel knee pain, and I thought it was from running too much, so I stopped running. And the knee pain didn't go away. Then I started to get wrist pain, and then thumb pain, elbow pain, shoulder pain, and that's when I knew this is not from exercising. And I was in denial for a month or two, and it was pretty excruciating, I'll say. It escalated very quickly, and from what I've heard from a lot of other people, that's actually common, unfortunately. So I started my process, going to my primary care, and they sent me to different doctors, and I finally landed at a rheumatologist. I'm one of those people where my blood work was perfect, my RA and lupus and all of those, ANA, were all negative. The only thing I had was high inflammatory markers, which show that you're inflamed and in pain, so you don't look like a crazy person. They just started examining my joints, and they call that seronegative RA. Some doctors call that inflammatory arthritis, with the hopes that it will go away, but next month will be a year or so.

Linda Elsegood: That's a long time isn't it? 

Tracey: Yeah; I don't I don't think it's going away. 

Linda Elsegood: Who is guiding you with your LDN? Your naturopath still? 

Tracey: The naturopath is still guiding me with my LDN and my supplements. Rheumatologists generally go right away to medication, pharmaceuticals, which I understand, but I take all my test results and all of the suggestions from my rheumatologist, and I go to my naturopath, and we discuss it, because he'll spend more time with me. We kind of agree on what the next step will be trying to take things conservatively. So that's how I landed on hydroxychloroquine, but also the diet and the supplements. Since nine ten years ago, there have now been studies for RA where they're using it in slightly higher doses, all the way up to 9 mg actually. He sent me all studies, and I thought I would go ahead and try that, and very slowly titer up. I like to do one thing at a time so I can see what's working. 

Linda Elsegood: Yes, it gets a bit confusing doesn't it, if you start too many things at the same time. 

Tracey: Right. I had started that hydroxychloroquine and thankfully had zero side effects, and I let that work a few months, and then then I started increasing the LDN. I've only been doing that about 12 days, so we'll see. Hopefully, in another month or two, because I think it will be gradual - I don't think I'll just wake up with no pain. I think it will be more gradual, looking at my pain level over a whole month versus just day to day. 

Linda Elsegood:  Yes, well the good news is I know of two rheumatologists that will actually prescribe LDN as a first-line treatment. The LDN Research Trust has been going over 18 years now, and the message is spreading well. It's not just naturopaths anymore. Conventional medicine doctors who find that their patients need extra help, and they've tried everything, and there isn't anything extra. Many of these doctors have looked outside the box to see what else there is out there that they can prescribe to help their patients. I know of neurologists, dermatologists, gastroenterologists, a lot of consultant doctors, who are interested in using LDN. When I started LDN in 2003 there weren't that many doctors prepared to even look at LDN. There were pockets of doctors all over. But it's a lot easier now for people to get LDN than it ever was before.  Are you still with the same naturopath that you…? 

Tracey: Yes I'm with the same naturopath for, I believe it's 10 or 11 years already. People can still see a rheumatologist or endocrinologist or whatever, but it's really nice to also have a functional doctor or naturopath to run things by them as well, or to find a doctor that mixes alternative, western, eastern medicine, and looks at all sides. A lot of the drugs for RA, multiple sclerosis, etc, Crohn's are pretty serious drugs with hefty side effects. I like that you know rheumatologists that will start with LDN first instead of running to methotrexate or these other low-dose chemo drugs.

Linda Elsegood:  Methotrexate, I know there are people who have said it's helped really well initially, but as you were saying, the side effects are high. They're very toxic drugs. 

Tracey: Very much even at low dose. 

Linda Elsegood:  If LDN if it's not going to do you any good it's not going to do any harm. It's not a toxic drug. It's safe to try without running the risks of getting awful side effects. So, what would you say to people who are skeptical about trying LDN, because there are still people out there who like alternative therapies and LDN is still a drug, and some people are like no, I don't want to take drugs, any drugs, doesn't matter that it's a low dose and it's not harmful, it's still a drug. What would you say to people from your experience about giving LDN a try? 

Tracey: Well, I had an excellent experience basically. No side effects. But I do know that some people need to titer up more slowly, which they can do. I just feel like the side effect profile for LDN is so minimal, and from what I know, and I have read quite a bit of studies, nothing, no side effects are permanent, and it's such a low percentage of people that continue on and the side effects don't go away for them. It has such a high success rate versus side effects. I just feel that they should research that, and I know occasionally somebody will say naltrexone, you know they'll look it up right away and they don't understand low dose naltrexone is different than naltrexone. Everybody absolutely has to know the two different situations, and just read the studies. I haven't found one study that says really anything negative. Like you said, the worst thing that will happen is three months later you find it didn't work for you. It helped me greatly with Hashimoto's, and it basically changed my daily life, so I'm hoping that will also change my RA effects as well. 

Linda Elsegood: Well amazing story, and thank you very much for having shared it with us today. 

Tracey: You are very welcome.

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

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Summary:

Ellen is from the United States and takes LDN for lupus, Sjogren’s, Hashimoto's and interstitial cystitis, and for pain. She is in her 70s, and began with autoimmune issues at 24. When she started LDN, she quickly had this overall feeling of feeling good, and was able to increase her activity levels greatly.

Full edited text:

Linda Elsegood: Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Today I'd like to introduce Ellen from the United States, who uses LDN for multiple conditions. Thank you for joining us today, Ellen

Ellen: You're welcome. Thanks for interviewing me.

Linda Elsegood: Could you tell us what it is you take LDN for

Ellen: I take LDN for autoimmune diseases. I have lupus, Sjogren’s, Hashimoto's and interstitial cystitis. But, I was hoping to take it to get rid of pain

Linda Elsegood: Right. When did these conditions start? How long have you had them?

Ellen: I got Hashimoto's when I was 24 years old, and interstitial cystitis in my 30s, and I think I might have had lupus in my 40s, but I don't know, you know, people would say, why is your face… So I think it was the butterfly rash. I was tired all the time. I had pain all the time. I just thought that's what everybody lived with. Then the <rainy> started in my late 30s and early 40s, and we moved away from this small town in north-central Pennsylvania, and I moved to Savannah, Georgia, and I began to play tennis every day for hours, and I didn't use any sunblock, and all of a sudden, my head, this terrible rash itching, and then I got really tired. I was diagnosed with lupus actually at age 61. Then, in my 40s, I got ulcers on my cornea from dry eyes, but nobody picked up on that, and so recently, my eye doctor said I had Sjogren's, and I had another rheumatologist say yes, you have Sjogren's. So it's just like, everything kind of, just every decade, it’s something new.

Linda Elsegood: What did the medical professionals do to help you cope with what you were experiencing?

Ellen: Oh, nothing, because I don't think I told anybody, because they thought I was normal. This was normal. I know I had two young children 21, 20 months apart, and my husband was a lot older, so I did everything, and it was very stressful, the Hashimoto’s. I think I know that my aunt and two uncles had Hashimoto's, so that was sort of, I guess inherited. I'm not sure if you can say that. But the other things that came on, I think it was I had very high-stress in my 30s, in my 40s, and my 50s, and then when my husband died, I don't know. It was kind of a relief, but he was older, and he was kind of stressful. An interesting thing is that I moved to Savannah, Georgia, when I met my third, but I was never too sure.

So, what LDN has done for me: the very first time I took it, I just had this overall feeling of feeling good. I felt positive. I felt like I could do the laundry, I could cook dinner, I could swim, I could play tennis. Yeah, it was just wonderful, how easy was it to get a prescription. Well, I thought it was easy. Even though I was in my 60s - a lot of people aren't familiar with the internet and stuff - I just went on the internet. I looked at your webpage, and I found how to find a doctor, and I arranged an interview and paid my hundred dollars, and he prescribed it for me. It was real easy.

Linda Elsegood: And how long ago was that?

Ellen: the only time I had side effects is when I went up to six milligrams. I thought if I took a larger amount, maybe the pain would be less, but I kind of had hot flashes. I was really hot and sweat profusely, and then I would get real cold, so I went back down to three. Now three seems to be okay.

Linda Elsegood: And what are your pain levels like on three?

Ellen: Well, my pain is not too bad, but I think it's some other things that I'm taking. I am not really sure if yes, low dose naltexone is reducing the pain, but I feel good on it so I just keep taking it. Yes, I feel good. I feel good,

Linda Elsegood: If you were to rate your quality of life prior to starting LDN, what would it have been?

Ellen: My quality of life was pretty low. I didn't feel well. I was so tired and just lethargic, and I just kind of did a lot of sitting around, and all of a sudden, I took it, and it was RESULT. I feel good. I think the release of the endorphins just makes you feel better. It could be, I just don't know, but I don't have a lot of pain right now. I don't, so it's good. It's good. It could be the LDN, it could be, yeah.

Linda Elsegood: Do you have any thyroid problems, and what about the cystitis, is that under control?

Ellen: I cope with it; I don't notice it during the daytime. When I go to bed at night, I have pain; I take two muscle relaxers at night and the low dose naltexone, and it's not excruciating pain. I'm so used to it. I just sort of go okay, take a deep breath. It's just a nuisance, basically. I did have treatment for that at one time, and I'm thinking about doing that again, but for now I’m just trying to ignore it, and to be frank with you, I eat too much citrus things, and that's a real irritant. If I would cut down on that, it would be better. Coffee isn't good even for bladder, and I love my coffee. I'm just going to be 73 in August, and I just don't want to do certain things. I just want to live my life, and I'll put up with the pain. But I told you, I play golf and I play tennis, and I swim on the swim team, so to speak - I go to swim, me! So yeah, I'm doing okay lady!

Linda Elsegood: What about the dry eyes? How are you coping with that?

Ellen: That is really amazing. I have been doing my drops twice a day now, and if I do that, I seem to be doing well. I also have a prescription in the refrigerator from my eye doctor, with the prednisone drop, so if my eyes flare up, I'll use the drops, and the eye doctor is okay with that. She will check the pressure in my eyes to make sure it's okay, but the dry eye can be really bad. And then the dry mouth is a nightmare, which is… So, I have a lot of things that could make people depressed ,but I guess I've just sort of gotten used to it, and I just get up every day, and I try to do everything I can do and try not to overdo it.

But today, I did. I went to my garden, and I stayed too long. I am in bed.

Linda Elsegood: I hope you recuperate quickly. I mean, we, it's something I think we all tend to do when you feel good. You want to do as much as you can while you feel good, and then you have to pay it back with interest. Do you manage to bounce back quickly? I mean, would the next day, like tomorrow, be okay or would you still be really fatigued?

Ellen: Well, I was so bad when I got home. We decided to take another five milligrams of low dose naltrexone in the hopes of keeping a square away, so I did that. And I won't be on that one, but I take five milligrams, I took an extra one.

Linda Elsegood: Thank you for sharing your story with us today. I hope you get enough rest today to feel fighting fit tomorrow.

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

Ellen takes LDN for Lupus, Sjogren’s, Hashimoto's and interstitial cystitis, and for pain. She is in her 70s, and began with autoimmune issues at 24. When she started LDN, she quickly had this overall feeling of feeling good, and was able to increase her activity levels greatly.