LDN Video Interviews and Presentations

 

Madi Wend - MCAS Documentary Fundraiser; August 2023 (LDN; low dose naltrexone)

 

 

Leonard Weinstock, MD - MCAS Documentary Fundraiser (LDN; low dose naltrexone)

 

 

Linda Elsegood: Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. Today I'd like to welcome our guest Pharmacist Suzanne Rosenberg from Community Compounding Pharmacy in Oregon. 

So could you tell us what made you decide to become a pharmacist? 

Suzanne Rosenberg: When I was in undergraduate school at Temple University in Philadelphia, which is my hometown, I worked at a pharmacy and I loved it. I loved working with people. I just loved everything about it and so when I graduated with my degree in psychology I applied to Northeastern University in Boston, Massachusetts and started pharmacy school two months later. I received my pharmacy degree from Northeastern. 

Linda Elsegood: Have you always stayed in the Oregon area? 

Suzanne Rosenberg: After I graduated pharmacy school I got in my car and drove to Portland, Oregon to visit some friends. I never left. That was 27 years ago. I've been practicing as a pharmacist exclusively in the Portland, Oregon area. 

Linda Elsegood: When did you buy the pharmacy? 

Suzanne Rosenberg: I moved to Portland and I worked for small independent pharmacies. I got really interested in herbal medicine. There was a company called Wild Oats that opened a large store and they had an idea where they put a pharmacy with naturopathic medicine in this grocery store with a yoga studio. They asked me to manage it. I did for six and a half years. I managed this pharmacy and turned it into a compounding pharmacy. Then another local chain recruited me and I did that for four and a half years. Then I decided that I had all these ideas of things that I wanted to do. Fifteen years ago I started Community Compounding Pharmacy in Lake Oswego, which is a suburb of Portland. It's a compounding only pharmacy. We predominantly work with integrative practitioners which I've been working with for over 23 years. I work with naturopaths, functional medicine doctors, integrative practitioners all over the West Coast. We started mainly in Portland, in the Northwest, but now we work with integrative practitioners up and down the West Coast.

Linda Elsegood: Please tell us about your pharmacy. How big is it? Do you do sterile and/or non-sterile compounding? 

Suzanne Rosenberg: We're fortunate that we only do non-sterile compounding. We're about 10,000 square feet. We have about 45 employees. We're open six days a week and we ship all over the nation, predominantly on the west coast and certain states on the east coast. Mostly on the west coast; Colorado, Arizona, Alaska, Hawaii. On the east coast: New York, Maine, Vermont, Connecticut. We are pretty much licensed mainly on the east and the west coast. We have been fortunate to have an extremely amazing staff that really supports our patients and our doctors and one of our focuses at Community Compounding is education. If you go to our website what you'll find is that we really focus a lot on education. We do that in two ways. One is we actually offer continuing education twice a year for the naturopathic community, although nurse practitioners are able to get the Continuing Education Credits as well. We actually just had one on Saturday and LDN was a big topic because it is for most ailments. One of our topics uh was PANS and PANDAS which is predominantly a childhood situation where they get inflammation. Low dose naltrexone (LDN) is a treatment for that and one of our doctors, Dr. Sarah McAllister spoke on Saturday at this conference and brought up LDN. In addition to that we also make it a priority to offer education for our patients. Patients have access to our pharmacist. We have four pharmacists on staff each day. One of the things that we really pride ourselves on is making sure that if a patient calls and has a question that their questions are answered in real time. In addition to that, every prescription, before it goes out, gets a personal phone call from one of our pharmacists to counsel them and make sure that they understand what this medication is used for, how to properly take it and just ask any questions that they may have before that prescription goes out to them. 

Linda Elsegood: Education is key. I would say pharmacists, even though they’re busy people have more time to do the research than doctors do. You are the people that educate the doctors and do the hand-holding and explaining to the doctors. They are not experts in drug interactions. That's the job of the pharmacist. We find the pharmacies that spend the time on educating their doctors help so many patients because you get a new doctor on board. How many patients does that new doctor prescribe LDN for? Then that doctor meets up with other doctor friends and they invariably end up talking about problem cases. Then LDN comes up and it's easier for the pharmacist who deals with that doctor to mention LDN because of a light bulb moment. I was talking to a colleague who talked about LDN but I don't know much about it, I don't know how to prescribe it. Without the pharmacist being so well educated themselves about LDN they wouldn't be able to convert the doctors into LDN prescribers. 

Suzanne Rosenberg: I’m trying to convert doctors in Oregon. Oregon is kind of one of the meccas of alternative medicine. In Portland and in Oregon in general we have a lot of information. We have a really tight integrative community here and it's really neat to see. They teach each other, they're supportive of each other. It's a really neat place. I feel very fortunate that I get to practice in Portland, Oregon and in the northwest. It's a really special place. Especially as an integrative pharmacist. My entire pharmacy is an integrative pharmacy. Our model is different from some of the other compounding pharmacies in the city who I have a ton of respect for. Ours is different in the sense that a lot of the other compounding pharmacies will market to doctors who are more focused on allopathic. We do work with allopathic practitioners. We are the main compounding pharmacy for OHSU. Alll of their LDN from Oregon Health and Science University or at least most of it they have a tight relationship with us. Our model is different in the sense that we really only market and seek to educate alternative practitioners at this point. 

We are licensed all over the nation and I personally will travel. I have another woman, Holly, who also helps me. And we meet with naturopaths, functional medicine doctors, integrative practitioners, doctors who are interested in learning alternate ways of treatment. What we see as our role is to go out throughout the nation and meet with these doctors. That's really our focus. We work with doctors all over the nation. We actually will travel and we do what we call a lunch and learn. On our website you can actually go onto our website and there's a doctor portal on there. In that doctor portal you can actually request lunch and learn. We go and we sit and we meet with these doctors. We go over integrative products that we have. A lot of them have never heard of these formulas. Because we work so closely with the integrative practitioner group in the northwest we're actually creating formulas, including using LDN. We've been using a lot of LDN topically at Community Compounding. We have a formula now that we're really proud of that is a topical LDN for lichen sclerosis with some herbs in it, as well as, some hormones. We also use LDN topically when it comes to psoriasis and eczema. We use that in conjunction with a product called Ketotifen which is a mast cell stabilizer. What we do is we use LDN orally but we've also been utilizing a lot in our topical preparations. And we use a lot of integrative treatments for hair loss, skin conditions, gut, gut health and will intake different products and combine them for these new products that a lot of doctors haven't heard of because they're predominantly products that we've created with doctors in the northwest. It's really neat to go out and share these products with our doctors. All of this stuff actually is available in this doctor portal on our Community Compounding Pharmacy website; you'll find it. You will need to ask for access. My assistant will send you a code within 24 business hours. You'll have access to all of our prescription pads, all of our research articles that we have in there, and recommendations for treatments. 

I have a pamphlet about a talk that I had done in January in Hawaii for some naturopaths. It is is a little pamphlet of our top 20 formulas that our pharmacists love. Not all of them are things that we do every day but they're things that patients have come back to us and said, “Wow this really works.” Or they say, “A doctor says that formula is amazing.” Then they start telling their colleagues. That's a new thing that we just came out with a couple months ago. It was serendipitous. We didn't intentionally plan to put this together but I did it for a talk and handed it out to some doctors and they loved it. So now we have a list of the top 20 formulas that we wanted to share and we'll be adding to that regularly as things come up. A place to get a lot of information is on the doctor portal. 

Linda Elsegood: You mentioned Dr. Sarah McAllister, (you can put her name in YouTube you will see that I interviewed her many years ago. Maybe even as many as 15 years ago.) It's been a long time since I have spoken with her. She is a very nice young lady. 

Suzanne Rosenberg: She's amazing. Her talk was amazing. If anyone's interested in learning more about our talks you can go online. This one we just had recently, so in about two weeks the lecture will be available. If you're interested in learning or you know can't attend any of our webinars they are in person and they are also webinar based. You're more than welcome to visit our website. You don't need to log into the doctor portal and you can get access to these conferences. We do two conferences a year. Some of our other topics that we cover are women's health, Ehlers Danlos, mold, PANS and PANDAS. We had mitochondrial health on this last one. I would say at least 60 percent of our talks have LDN in those talks because it's so prevalent now in treating so many things. We've done a lot with the gut. We've had a lot of gut talks at these conferences. Another phenomenal naturopath in Portland, but you will see that in a lot of these treatments LDN is indicated for a lot of these patients. It is a hot topic not only in terms of autoimmune which is kind of what traditionally I would think of it being used for but now we're seeing it in so many other ways to support our immune system that is pretty much in every conference whether it's at every talk maybe sometimes women health not so much. It's a hot topic at our talks. 

Linda Elsegood: What about chronic pain and opioid addictions and people off of opioids? 

Suzanne Rosenberg: We have an amazing doctor in Portland who is a naturopath. She works at the pain clinic at OHSU. She's an amazing doctor, amazing naturopath, an amazing human being. We worked very closely with her and she prescribes two things. Well, several things through us. One of the main things she prescribes through us is LDN. She does a lot of our topical pain creams as well. We also do topical pain creams for patients who are in chronic pain and the goal is to get them off of their narcotics and switch them over to LDN. I just had a patient yesterday who actually this was this was an unusual patient this was a patient who was not seeing one of these doctors, but has done her own research and is starting on a really low dose of LDN and is working with a doctor who has basically been brought in through the patient request of prescribing LDN. So here's a doctor who knew very little about LDN and here's a patient who's educating their doctor on their own. These two came together and I was counseling the patient and she was really up on her LDN. There's a lot of information out there. It was really neat to see and she was telling me, “Yeah my doctor doesn't know a lot about it so she's going to help me you know. We're gonna do this together.” That is an unusual situation but we see that too. It was a really neat conversation. 

Linda Elsegood: Regarding women's health: Dr. Phil Boyle has been using LDN in his Fertility Clinic for 20 plus years now with great success. He also uses it for endometriosis, polycystic ovaries, painful periods, heavy periods, all these things that women have to endure is found to be very very helpful. 

Suzanne Rosenberg: This is also a phone call I had yesterday with a nurse practitioner. I was on the phone all day long as are my pharmacists. They are answering questions, coming up with formulas. We had a nurse practitioner call me yesterday. Again, someone I've known for 20 years and she has a patient who has severe pelvic floor pain. What we're doing for this patient is a formula. This particular patient had actually some inflammation. They had burning pain. We were doing a suppository for her. She has mast cell and we're doing cromolyn and she had already been on diphenhydramine and ketotifen which are antihistamines. I suggested that she adds some naltrexone to it. So we'll see what happens. These are the kind of formulas we're always thinking when we're having a situation where a patient is in pain and we're trying to oh wait, and put some lidocaine in there as well, um but when a patient is in pain and we're putting things together naltrexone is always something that I'm starting to incorporate into these products because I'm finding that we're getting great results. I mean the Lichen sclerosis formula has been a huge success for us and this was a formula that we had been playing around with for years. We've been working with glycyrrhiza which is licorice root, which is a common treatment for lichen sclerosis. There was a product on the market for many years that contained licorice root. This new formula that we've created is a combination of estriol, glyceriza, aloe and naltrexone and some vitamin E. It's a steroid free cream and we have been working and trying to find something that is steroid free for lichen sclerosis and this is really the first time that we're getting feedback from our doctors and our patients, our doctors primarily because you can see it. You know they try it on one patient, they try it again and they're calling me and saying what was that formula that I called in for lichen sclerosis? I need it for this patient because it works so well. That's kind of how we get our feedback. We're really excited to have that and I'm finding that when I'm creating formulas now I'm thinking a lot more of putting naltrexone in these formulas even if they're not for other areas of the body. 

Linda Elsegood: Your patients that use it for a dermatological condition, how long do you normally find it takes before they experience any improvement? 

Suzanne Rosenberg: We are at a disadvantage because we don’t have a lot of patient follow-up. Usually pharmacists hear really amazing things or we hear things when there's an issue. We don't get to see patients all the time so it's hard for me to say but I know there's a research study that PCCA did specifically on naltrexone in their zematop product for eczema. It is something that you can Google and it has some dates and some time frames. 

What we do for our eczema and psoriasis cream is we actually add ketotifen to it as well. So it's a combination of naltrexone, ketotifen in their zematop product. Typically if patients don't get results after a month they usually stop. Most of our patients are getting results within a couple weeks. I have spoken to lots of patients with skin conditions. They seem to be the people that take the longest to respond, to notice improvement. Some of them may take six months. They stick with it and it takes that long. A lot of these patients are on LDN orally so they'll be on LDN orally for a while and then we'll start the cream. They've already had the advantage of being on LDN. 

One of the things that I did want to share with you guys is that one of the things that we decided to do as a compounding pharmacy, especially post COVID, is our focus was really on becoming efficient. By that I mean having patients wait for their medications is no longer an option. We really wanted to make sure that efficiency was a priority of Community Compounding. One of the things that we did because we work very closely with the mast cell activation community in the northwest is we decided to start finding ways to have our turnaround time shortened. We really value our employees. They are making large batches of capsules and it is actually physically challenging. It's a lot of work. About six months ago, one of the things that we decided to do is we decided to invest in a tablet press and we are now pressing two drugs at Community Compounding. One of them being naltrexone. We are one of the few compounding pharmacies in the United States that is making low dose naltrexone tablets. Our low dose naltrexone tablets are a little different from some of the other compounding pharmacies because we work so closely with the mast cell activation community. We're very aware of allergens and food sensitivities and potential allergens for these patients. When you make a tablet you have to put a binder in there. A binder is something that holds it together and most binders are pretty inert unless you have mast cell activation or severe allergens. These patients can't tolerate many things including such things that you and I could tolerate easily. What we decided to do is we decided to not use any binders in our tablets. Our tablets only contain two ingredients. They contain a cellulose that we specifically use that is GMO free and allergen free. It's kosher. It's made from organic materials. The only other ingredient in our product is the drug. It is a GMO organic material, cellulose, called flow cell and naltrexone. If a patient is a vegan, if a patient is allergic to silicon dioxide (which is a very commonly used for most tablets), there's no issues with taking these tablets. The best part about these tablets is that they are scored. What happens with these tablets is they can be cut very easily. As you know most compounding pharmacies, including us, make naltrexone capsules which are great and we've been making them for 15 years. Of course capsules can't be accurately split. You can open one up and kind of guesstimate which we don't typically recommend as a pharmacist but it can be done. With these tablets you can use a pill cutter and we do recommend using a pill cutter because we use no binders. We press them really hard. So they're very hard. We do tell all of our patients that they will need a pill cutter. They can cut them right down the center so they know that they are getting 50 percent of that tablet. As an example, we only make three strands. We don't make a 1.5 because we make a one, a 3 and a 4.5. The one we make because we have so many patients who are super sensitive to medications, a lot of our patients will start on the 0.5 dose. It's not the most common but it's definitely common enough that it was something that we wanted to be able to offer this option. For the super sensitive patient you would use the one milligram tablet. You will have them cut that in half and start with a 0.5 and ramp up slowly to the desired 4.5 milligram dose or three milligram. Wherever they land. The three milligram tablet we made because that can be cut in half and they start with the 1.5 milligram tablet, half of that which is the 1.5. Half of the three and slowly ramp up to the 4.5 and then we do the 4.5 as the maintenance dose. What's really nice about it is that this saves patients a significant amount of money when they're using these tablets because as you know compounding pharmacies are very labor intensive. Any time that you can decrease labor in a compounding pharmacy what you're doing is you're significantly decreasing the labor dollars and then the goal is to be able to save the patient's money. The only way to do that as a compounding pharmacy is to decrease labor. What is important about it is that we have the same staff that we had here a year ago but people are working better not harder now. 

We now have an R&D team, which is a research and development team, that helps us when we have new products that we want to create and there's an issue with something, if we want to bring in a new base and we want to play with it, we have an entire team now who works on all these products. We have an IT team now. We just came up with a new IT team, where my staff in each department has their own IT specialist. The point that I'm trying to make is that as a result of the tablet machine and other ways that we've become more efficient we're actually a better compounding pharmacy. We are offering better customer service than ever. Our turnaround time is now one to two business days. I now have more time to go out and meet with doctors, educate, network and learn. The tablets are great for so many reasons. For the patients, for the pharmacy and for our ability to educate and really reach out to more people. We are really excited about these tablets and they've been a huge success for us. They've really been a great relationship builder, too. Doctors are able to use my local pharmacy for my estriol vaginal cream but also use Community Compounding for tablets and then we create these relationships. 

Now they have more pharmacies to network with if they have issues that come up with their patients. It could be that their compounding pharmacy doesn't carry a product that we carry and that happens often. Some things are expensive to carry and that creates new networks We work with other compounding pharmacies and share formulas and that has been a really nice way to network with doctors and our patients. 

Linda Elsegood: Can you tell people your website so that they can go and find out more about you. 

Suzanne Rosenberg: It is www.communitycmpd.com Or you can also type in Community Compounding Pharmacy in Oregon and you will find us. We are licensed in the whole west coast, most of the east coast. 

 

 

Doug - US: Ehlers-Danlos Syndrome (LDN; low dose naltrexone)

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 Doug from the United States who uses LDN. Thank you for joining us today, Doug. 

Doug: Thank you, Linda. Thank you for having me. 

Linda: First of all could you tell our listeners what it is you take LDN for? 

Doug: I take LDN for a condition known as hypermobile Ehlers-Danlos Syndrome. It's a genetic disorder.  

Linda: Can you tell us your story? You know, when you were absolutely healthy, fine. How long ago was it when you noticed something? 

Doug: Well, I don't think I've ever been absolutely healthy and fine. Ehlers-Danlos is a genetic disorder that I've come to learn that I've had since birth but there have definitely been ups and downs. In my childhood I was quite affected by symptoms that I didn't identify. Nobody identified at the time and then through puberty and adulthood, I guess as a male, the testosterone sort of masks and camouflages a lot of the symptoms. I'm 47 right now. About 10 years ago I started to notice the symptoms coming back. Joint pain, muscle ache, fatigue setting in, all those things and that sort of corresponds to the natural decline of testosterone as we age, and my opinion is the protective mechanisms that it gives us with the Ehlers-Danlos. Eventually, through a series of consultations with my primary care physician, she had started to suggest some things as possible causes, and one of those was hypermobile Ehlers-Danlos, and I'm an extraordinarily flexible person. I always have been. But I never knew that that was potentially a symptom. Incredible fatigue, muscle ache.  

I had been on a series of medications for that. I was on some light duty opioids for a year or so. A whole lot of non-steroidal anti-inflammatories. Ibuprofen. I was taking so many ibuprofens a day she eventually suggested that I move to a longer acting anti-inflammatory known as meloxicam, at least here in the states. I was on that for a number of years. It definitely helped. It took the edge off a lot of things. I was pursuing the diagnosis of Ehlers-Danlos for about a year and a half. We eventually got my daughter diagnosed and then I was diagnosed a year later. I'm sorry six months later. Immediately following that I started to really educate myself on the condition and things I can do to to support my health and and my well-being and I eventually got a phone consultation with Dr. Pradeep Chopra, who you've interviewed on here before; and I think he's on your your Board of resources or listed many places in affiliation with LDN. That's one of the first things he suggested, that he recommends all his patients try it, and it works for a great majority of them, some of them, not at all, some of them less than ideally, but he suggests, should suggest, that everybody at least look into it. So I did. I got a hold of my primary care physician. She was familiar with it in the high dose used for addiction. She had never heard of any sort of low-dose guidelines or use. I happen to bring with me to the appointment with her the three guides that are on the LDN Research Trust website. The prescriber guide, patient guide. I printed those out. Brought them with me. They're, in my opinion, the best source of information out there for a newbie who's not familiar with it. She read through, and I left that appointment with a prescription. I started very shortly after at a low dose, like 1.5 mg, and for me, I had benefits immediately. I was surprised. The very next day for me was quite abnormally above average, and I thought it was a fluke because we have better days and not so better days; and the day after that was the same, above average. And it just continued above average days in a string, which is very abnormal. I went about two weeks, and I doubled my dose, and the days immediately got better again.  
I stayed that way. A week following that I went up to 4.5 mg, and then eventually rounded up to 5.0, and I've been at 5.0 ever since. It's been right about a year now, and I feel fantastic. My daily aches and pains are minimized. Pain for me, discomfort for me, used to be something I considered in kind of like every decision that I would make. How I feel right now? Do I want to go do that? Is it going to cause me to be more comfortable later? It's still in my mind, but it's not a component of my daily decision making anymore. It's just fantastic.  

Something I was not expecting at all was the reduction in fatigue and the incredible boost of energy that I have. If I would do anything physical I would, you know, feel like I kind of got hit by a truck or something. It just laid me out for maybe a day or two. Now, that recovery period is almost nothing. I can do something. I can be extraordinarily physical, and I will be tired at the end of the day, and perhaps the next day I will still be a little tired, but I will not hurt. It's just has completely changed how I exist as an adult. It's been phenomenal.  

Linda: When do you say you had the symptoms as a child being genetic? Did you know anybody else in your family who had had it prior to you? 

Doug: So far, I am, and my daughter, we are the first in our lineage, that we know that is diagnosed or that demonstrates any symptoms. Both of my parents are notoriously not flexible at all. They have no symptoms of any of this. My father remembers his mom, my grandmother, at 80 years old demonstrating some extreme flexibility. Just snapshots in his mind. He's seen me do some things and then he'll mention hey Doug, I remember watching you do that there that I saw my mom do that when she was 80 years old. So that's the nearest link that we potentially have. Somehow, he has zero symptoms of anything. Which is not a traditional inheritance method for Ehlers-Danlos. 

Linda: So you said that your symptoms were masked once you hit puberty. Up until puberty what was it like for you as a child living with this? 

Doug: I had a lot of coordination issues as I guess is common. I would trip and fall, twist my ankle, I thought it was norm, usually to come in from recess having rolled your ankles multiple times, so limping back into the classroom. I didn't know that it was just me. You know, little kids are oblivious to things. I had fairly significant growing pains, but that's always passed off in children. You'll get over it. You outgrow it. I never did. It was minimized later on as I got busier in school and life and everything else.  

I had also migraines as a child. Fairly severe migraines. They all went away in like middle school, puberty area. I don't recall having any gastrointestinal issues that are very common, but I do have some of them now as an adult. 
Linda: So as a child nothing was investigated. It was all just put down to growing pains? 

Doug: The growing pains, you're a kid, we were not in a big city with a lot of medical awareness. I grew up in a small town of 5,000 people with one physician in town. So there wasn't a lot of visibility of anything like that, and this was also 40 years ago.  

Linda: You were saying that your daughter was diagnosed before you? 

Doug: Yes.

Linda: It just seems strange that you weren't diagnosed first. So was it her diagnosis that bought the medical attention onto you? How did that go? 

Doug: Yeah we kind of both came to it at a similar time. Uh she had been having, which I've learned is very common with females, a lot more of the GI issues and she had severe migraines for a couple of years. Also at the onset of puberty where females typically get worse and boys typically get better, so she had been having these issues and had made the rounds with neurologists and things. I had been having separate issues talking with my physician and we both sort of were keyed into or learned the words EDS all at the same time and started to compare things and the reason she got diagnosed six months before I did is because nearer to us is a children's hospital that has an EDS clinic and we were able to get an appointment with them relatively quickly. I think we waited three months to get an appointment. They won't see me as an adult. I ended up having to call around and I got an appointment at another Children's Hospital two hours drive from us. They did not have that limitation of seeing adults so I was diagnosed by genetics at a children's hospital and so was she but different hospitals.  

Linda: Was your daughter offered anything different than you were offered in the past once she'd got the diagnosis? 

Doug: No she's been offered similar meds. We both see the same primary care physician, so she's been offered all the same meds I have. She hasn't thought it wise to take any of those yet, or tried any of them yet. I have urged her to try the LDN also with this. It's been offered via the physician and she's not ready to try that yet. But she knows the success I've had with it, and she knows how she could obtain it. So that's good. 

Linda: When she's ready. 

Doug: Yeah exactly. You can't force feed somebody to take anything, and you have to appreciate LDN is still a drug. There are people out there who want to get worse before they take LDN, but if you can get their mindset around that, if you take LDN you're not going to get worse, hopefully, and that you will improve. You can't make people take it till they're ready. You can only teach people and portray information, present information.  

Among the benefits I've had, again as I mentioned, the decrease of fatigue and the incredible boost of energy. I have been much more active and since a lot of the impact of Ehlers-Danlos is, you know, joint and muscle issues being a lot more active has allowed me to. I've increased my muscle bulk, muscle density. I get out and walk six to ten miles a day. A couple of years ago I would have been destroyed just by walking one mile. I would be sore the entire next day just walking a mile. Now that's nothing to me now. And I feel great afterwards, and it has allowed me to really improve my day-to-day. 

Linda: You were talking about gut issues. What did you actually have wrong with your gut at that time, and have you altered your diet? 

Doug: I have not altered my diet. I think my gut issues are fairly minimal. I think I have kind of a slow-fast digestion cycle, if that makes sense? Some days it goes quickly. Some days it goes slowly. But it is very minimal compared to a lot of the gut issues that I've read that some of the Ehlers-Danlos patients have. I cannot say whether LDN has helped the gut issues. I have no awareness as to if there was any benefit for me with that.  

Linda: So if you were to have rated your quality of life on a score of one to ten prior to LDN with 10 being best what would it have been? 
Doug: I would say maybe a 5. 

Linda: And now? 

Doug: Now I feel better than I ever have as an adult. It's a 10, but is my 10 the same as somebody else's, you know, a normal person's 10? I don't know. My 10 is probably a normal person's 8 or 9 but I have never felt this good. 

Linda: That's amazing. 

Doug: LDN is currently the only drug that I am taking for any sort of pain or other benefit. I'm not taking the anti-inflammatories. I'm not taking anything else. 

Linda: When you first started did you have any introductory side effects? 

Doug: Yes I did. There was one: I had the dreams. The weird dreams. There were vivid dreams. They were never scary or frightening or anything like that. I'm a person that typically doesn't dream, maybe once or twice a year I'll have a dream that I'll wake up and I'll remember, or have awareness of a dream, and then suddenly I was doing that every single night, and I would wake up disoriented. I would just say disoriented, like I would wake up and say what was that? What happened? Just be momentarily confused. Then I was fine. And that lasted maybe 3 or 4 weeks, and perhaps now I'll have one of those maybe once a month, which is maybe closer to my normal cycle of being aware of dreams. But that is the only side effect that I'm aware that I had.  

Linda: How long was it before you noticed something? Notice the side effects? Notice an increase in benefits?

Doug: It was literally the next day. The very next day I had improvement. I didn't know that it was improvement from the LDN. I just thought I was having a sort of a better than average day. and it just continued. And it scaled the better days directly as I stepped up my dose. 

Linda: How long did it take to get to where you are today? Do you think in terms of benefit? 

Doug: Probably a month before I scaled up to five milligrams, which is the dose I'm on now and I said you know, I'm feeling really good right here, I will stay at this dose.  

Linda: You've been stable since have you? 

Doug: I've been very stable at that dose. I have considered perhaps going above just to see if there's another end of the curve for me, but I feel so good I haven't really seriously entertained modifying or trying other doses. I'm very, very happy.  

Linda: Do you take any supplements? 

Doug: I do. I take magnesium. I take zinc. I take extra vitamin C. I take vitamin D. These are all things that I understand those patients are known to have absorption issues with, so I take supplements, of all those. I think they have been beneficial for me.  

Linda: What would you say to other people who probably haven't been diagnosed but can relate to what you're saying? What would be your advice to them? 

Doug:  Advice? If you think you have this sort of condition, do some research into it. Educate yourself about every aspect that you can find about it. Try to find mechanisms and strategies that help to improve your quality of life. And pursue a diagnosis, or at least understanding in the medical community. You know, diagnosis isn't the end-all be-all, but finding the right things that can help you are important, diagnosed or not. There's a lot of strategies, and basically a recipe book of things to try that help a lot of people. 

Linda: Well thank you very much for having shared your experience with us today. 

Doug: Thank you for having me Linda. It's been wonderful chatting with you.  

Linda: Any questions or comments you may have please email me Linda l-i-n-d-a at 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. 

Ellen - US: Sarcoidosis, Ehlers-Danlos, 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I am Ellen from Rhode Island in the US. I am a patient of dr. Pradeep Chopra. I take LDN for Sarcoidosis.

I also have enlarged lymph nodes and granulomas in my lungs and Ehlers Danlos Syndrome.

It's a connective tissue disorder, which means the collagen in my body has been defective since birth.  I spend my life with subluxations. Ligaments and tendons are overstretched elastic dance. So joints get very loose. So at this time I am now recuperating from my 21st surgery.

Before I got diagnosed, I was an athlete and being able to be a master swimmer and a swim coach.

I started taking LDN in 2012.

I'm terribly drug reactive to the point that I actually had a DNA drug, sensitivity testing done.

And I'm really not able to metabolize things as simple things, aspirin, Tylenol, antiinflammatories Benadryl, all the opiates, etc

I started very slow because I'm so reactive  at 1mg up to 4 mg.

Within a couple of weeks, I noticed a huge change.

The way I understand it, it's similar to the feeling you have when you have had a really good exercise, and the endorphins are released in your system. It's kind of that sensation where you just feel happier.

I would encourage anybody to try it and see if it can give you a better quality of life. It's really worth a shot.

A lot of years went by that I didn't get the proper help. Now I actually have written a book for Ehlers-Danlos so if anybody over in my area is still looking for help It's called "Living Life to the Fullest with Ehlers Danlos", with an actual physical therapy protocol that is safe to use with a manual therapist as a guide.

 I've been on LDN, which has been over three years and what shocks me is how I'm basically okay. During the day I don't need to take medication.

I am learning to better live with it. I'm learning to probably be a happier person than I was before with this. I honestly think  LDN has helped me. It just there's something about it that just helps to calm the body.

Please listen to the video for the full story.

Ellen - US: Sarcoidosis, Ehlers-Danlos, 2013 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I am Ellen from Rhode Island in the US. I am a patient of dr. Pradeep Chopra. I take LDN for Sarcoidosis, with enlarged lymph nodes and granulomas in my lungs, and Ehlers Danlos Syndrome. It's a connective tissue disorder, which means the collagen in my body has been defective since birth.  I spend my life with subluxations. Ligaments and tendons are overstretched elastic dance. So joints get very loose. So at this time I am now recuperating from my 21st surgery.

Before I got diagnosed, I was an athlete and being able to be a master swimmer and a swim coach.

I started taking LDN in 2012.

I'm terribly drug reactive to the point that I actually had a DNA drug, sensitivity testing done.

And I'm really not able to metabolize things as simple things, aspirin, Tylenol, antiinflammatories Benadryl, all the opiates, etc

I started very slow because I'm so reactive  at 1mg up to 4 mg.

Within a couple of weeks, I noticed a huge change.

The way I understand it, it's similar to the feeling you have when you have had a really good exercise, and the endorphins are released in your system. It's kind of that sensation where you just feel happier.

I would encourage anybody to try it and see if it can give you a better quality of life. It's really worth a shot.

A lot of years went by that I didn't get the proper help. Now I actually have written a book for Ehlers-Danlos so if anybody over in my area is still looking for help It's called "Living Life to the Fullest with Ehlers Danlos", with an actual physical therapy protocol that is safe to use with a manual therapist as a guide.

I've been on LDN, which has been over three years and what shocks me is how I'm basically okay. During the day I don't need to take medication.

I am learning to better live with it. I'm learning to probably be a happier person than I was before with this. I honestly think  LDN has helped me. It just there's something about it that just helps to calm the body.

Watch the video for the full story.

Berglind from Iceland talk about LDN and Hypermobile Ehlers Danlos, IBS, Allergies (LDN, low-dose Naltrexone) from LDN Research Trust on Vimeo.

Berglind had suffered many years with her Hypermobile Ehlers Danlos, IBS, and allergies. At long last she found out about LDN on Facebook, and her doctor was LDN knowledgeable. He prescribed it for her. Within weeks her pain was reduced and she could finally get a good night’s sleep. It solved her IBS and allergy problems quite quickly. You will enjoy this interview and learn much in the process.

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

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

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

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

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

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

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

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