LDN Video Interviews and Presentations

 

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. 

 

D

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. 
 

 

The LDN 3: To Purchase with discounts before 1st September 2022 Go to ldnresearchtrust.org/ldn-book-3 for full details

 

 

LDN Webinar Presentation 18 May 2022: Dr Sato-Re - How and why I prescribe LDN in my integrative and general practice

Sponsored by Innovative Compounding Pharmacy https://icpfolsom.com/

 

LDN Webinar 18 May 2022 (LDN; low dose naltrexone)

LDN Questions Answered Live by

Pharmacist Dr Masoud Rashidi - LDN Specialist
Dr Sato-Re
Dr Mathewson

Sponsored by Innovative Compounding Pharmacy icpfolsom.com

 

 

Yusuf (JP) Saleeby, MD - LDN to help Long Covid patients; March 2022 (LDN, low dose naltrexone)

A high percentage of Covid patients continue to suffer debilitating symptoms well after the initial infection. This is because of the increased inflammation and reduced autoimmunity. Low Dose Naltrexone (LDN) bolsters and regulates our systems quite effectively. Dr. Saleeby observes many conventional doctors are finally recognizing LDN as a primary treatment for Covid long-haulers, as well as other autoimmune conditions. He cited the Ldnresearchtrust.org site as an invaluable source of information on LDN. He looks forward to Linda Elsegood’s 3rd LDN  Book coming out soon.

Review by Ken Bruce

How LDN is helping Long Covid patients - Dr Yusuf (JP) Saleeby (Trascript)

Linda Elsegood: Today we're joined by Dr Yusuf Saleeby, also known as JP. Thank you for joining us today.

Dr. Saleeby: Hey Linda, it's always a pleasure.

Linda Elsegood: Now, you're going to talk to us today about Covid and Covid long-haulers, so I'll hand it over to you. Thank you.

Dr. Saleeby: Sure. So you know, two years into the pandemic we're seeing still a few cases of acute Covid infections but as of today, and this is the first of March 2022, we are not seeing too many acute cases. But what we are seeing is quite a number of long haulers or long Covid and also post Covid syndrome. It's also referred to as the syndrome of post-acute Covid infection, and the sequelae involved. And we're seeing also some issues with folks who have been vaccinated, some post-vaccine injury, but essentially what's happening is we're seeing a good bit of folks who had can't shake the initial Covid infections. And we've seen cases where a person has been infected two or even three times with different variants.

But the focus in general right now, moving forward, is a large number of folks coming in with the post-Covid infection, and some still suffering from long-haulers. There's a protocol we follow. The FLCCC has a very relevant protocol that's fairly frequently updated based on this new science coming in, and peer-reviewed articles. And that's kind of what we adhere to, with a few modifications. We're a little bit more aggressive with some of the dietary supplements that we prescribe. But essentially, low-dose naltrexone, which was offered as a second or third line agent, has now, in the recent month, been moved up to a primary intervention. So along with things like ivermectin and prednisone and omega-3 fatty acids, which is essentially what's derived from fish oil, and high doses of Vitamin D. The other agent is naltrexone, as in low-dose naltrexone. They're asking folks to begin at one milligram daily and increase to four and a half milligrams in a very short period of time. They are also stating that it's best to have people on this for two to three months to see full effect. So as with some of the other interventions, like they're recommending ivermectin, weight dose dosing, which is 0.2 milligrams per kilogram body weight, until symptoms resolve. Not necessarily for 14 days or one month, but until symptoms resolve.

And the same thing can be said for the use of low-dose naltrexone in my patient base. A lot of my patients actually are on it for a number of reasons, whether they're suffering from Lyme disease or autoimmune disease. So my patients actually have a benefit of being on LDN at the therapeutic dose, whether it's three and a half to four and a half milligrams a day. So they have the benefit of that. And then if they do get Covid, their symptoms are usually quite less. We've not really had but one or two hospitalizations. The stays are usually very short, maybe two to four days, just for high flow oxygen, and then they're discharged home. To my knowledge we've only had one or two patients ventilated during this whole pandemic. So adherence to early treatment, and the implementation of naltrexone as part of that regimen, has been very successful for us. Now our attention is focusing on folks that have long haulers still - brain fog, fatigue, loss of smell and taste, are the predominant ones; hair loss - we're seeing that as part of the syndrome. But it's mostly the fatigue. And so naltrexone is becoming a big part of our protocol for them,

Linda Elsegood: And how open-minded are other physicians to prescribing LDN.

Dr. Saleeby: As you know, it's like a certain segment of the physician population, at least in the United States, I don't know how it is worldwide, but there seems to be a better embracing of the use of low-dose naltrexone than other interventions like ivermectin and hydroxychloroquine, because those two other agents have been politicized a bit, whereas naltrexone has not. But there are certainly other interventions that are embraced by folks that are open-minded to integrative, more holistic, and what we call functional medicine, than the standard mainstream medical doctors, although the FLCCC in truth is actually established by conventional doctors who are open to using early treatment with ivermectin and hydroxychloroquine, Alinia/nitrazoxanide, along with their traditional medications like prednisone, Singulair, some antihistamines Pepcid, things like that that are used in the protocol. But what they've also introduced are things like curcumin, Nigella sativa - which is the extract of black cumin seed oil, a very potent anti-inflammatory; higher doses of Vitamin C, melatonin, probiotics, and H2 and H1 receptor blockers. H1 would be your traditional antihistamines like Benadryl or Zyrtec or Claritin, and your H2 would be things like Pepcid/famotidine.

Some of those other agents - montelukast, which is Singulair, is also prescribed for those with MCAS - that's Mast Cell Activation Syndrome, which is part of the long haulers syndrome. It's where mast cells become destabilized and release a lot of histamine, so you have things like hives and rashes that appear, and some other complications. That's why the antihistamines and the leukotriene inhibitor Singular are used. There are some that will use anti-androgen therapies. There are some studies out of Brazil that showed that that was effective. And statins. I'm not a big fan of either of those two last agents, so I don't prescribe them in protocols for my patients. There's another SSRI (serotonin reuptake inhibitor) called fluvoxamine or brand name Luvox, which has been used, but it's not very well tolerated, so that's one that we have to be super careful with, because a lot of folks don't tolerate it. They have a lot of nausea or psychiatric kind of manifestations.

But LDN obviously is a great agent to use, because number one, it is very well tolerated; number two, it's very inexpensive. And it seems to be working very well. I mean, it was moved up from second and third tier to primary tier or primary agent to use by the FLCCC. And they're heavily research oriented. In other words, they don't make a move in that direction unless it's substantiated by large observational encounters with patients, or peer-reviewed journals.

Linda Elsegood: So, the million dollar question; put you on the hot spot here. What do you think that has done for LDN? Has it leapfrogged it forward far quicker than it would have done previously? And the second part of the question is, what do you think of everything that's been happening with using LDN for the symptoms of fatigue? What's it going to do to people with chronic fatigue syndrome?

Dr. Saleeby: Right. So yeah, I certainly think that the pandemic has elevated LDN to the top of mind for a lot of clinicians, both those that have been using it and were familiar with it to some degree in the realms of integrative and functional medicine, but also to the mainstream doctors who were unaware of LDN previous to the pandemic. Now it's front and center. I mean, it's one of four or five interventions that are considered top tier to use for people recovering from long haulers or post-Covid syndrome. So I think it did leapfrog it, I mean, in the minds of many doctors. To be put top of mind, that's a fantastic thing. That's kind of a good thing that came out of this horrible pandemic, if you will.

And the second question you had was, what about its effects on chronic fatigue. Well I've been using that in chronic fatigue and autoimmune patients and people with MSIDS (Multiple Systemic Infectious Disease Syndrome) or CIRS (Chronic Inflammatory Response Syndrome). Those are all different acronyms for almost the same essential issue. It's a syndrome that involves the immune system and inflammation, and we know that LDN and naltrexone in research is an anti-inflammatory from several different mechanisms. It helps suppress inflammation, and the post-Covid syndrome, and certainly the long haulers, is a problem mostly with inflammation. The virus is long gone. It's already out of our system. Usually 9 to 14 days after you first get infected, the virus has done its bad thing, and it's sort of kind of gone away, and what's left is the sequelae of that, which is lots of inflammation. And that's what actually hurts people. It destroys their lungs and other organs: liver, kidneys, things like that; and affects brain and cognitive issues, and things like that. So one of the interventions used is high doses of curcumin and black cumin seed oil. Those are potent anti-inflammatories. Even those that decide to use statins, they're using it for the anti-inflammatory nature of the statin, like atorvastatin. But then LDN comes in, which has a very safe and effective mechanism of lowering inflammation. I think that's why it's important.

Linda Elsegood: Well let's just hope that, as you say a good thing has come out of this. If we can get more doctors prescribing LDN and finding the benefits that patients have, hopefully they will prescribe it for more conditions. Mental health, autoimmune, cancer, pain, the list goes on. But I think it does make a big difference, the first time a doctor actually can see that LDN has done amazing things for a patient. It gives them the encouragement and the confidence to prescribe it for further patients.

Dr. Saleeby: Right, I think I definitely. And Linda, your website does a phenomenal job in helping me put together a PowerPoint presentation for your organization as well as for upcoming symposium I have. I've gone to your website, which is a great resource, and it lists all the different conditions that LDN is being used for, or would be useful. There’s this long list of conditions, categorized. Pulmonary, neuropsychiatric, cardiovascular. You've done a great job in enumerating all these conditions, and I think it's just a matter of time now for doctors to start embracing that, looking at the literature, looking at the peer-reviewed literature that backs up the use of this agent, a very unusual drug. It's one of my probably top five of my safe and effective drugs that I prescribe, and that's what I would grab. I tell my patients if I had to grab an agent to take with me on a deserted island, one of the top three would be naltrexone for the LDN. It's a powerful drug with a lot of uses, and it's backed up by research. That's the important thing.

Linda Elsegood: Talking about the website, we do update it monthly, so any doctor that tells us of a condition that they treated a patient for with LDN and had good results that's not on our list, we add it. We also add the latest clinical trials and peer-reviewed papers, and LDN in the news, things that have been happening. So we try and make it a one-stop, where a doctor, a researcher, a pharmacist who's looking to do a presentation, just like you were saying, that they can find the information quickly and easily. It's a never-ending job.

Dr. Saleeby: I know it is it's a great thing you offer, and I do send patients to that website in particular when we have a discussion in my office about LDN. I have some material I hand out to them, but I also direct them to the LDN Research Trust website so they can glean a lot of information. It's great resource for them.

And I understand there's a new book coming out, Linda?

Linda Elsegood: Yes, we've got the third LDN Book, which should be coming out in the fall. And we're covering different conditions. Many people have asked if it is the first book updated the third time. No, it's a series of books. So we've got Volume One and Two, now we've got Volume Three. And you put me on the spot to try and think what's in Volume Three. But it's really exciting, and you've written a chapter as well. So I think watch this space, and it will be available in a few months.

Dr. Saleeby: I mean reading Volume One and Volume Two I thought well, maybe that would be just an update, like a second edition. But it wasn't. Some novel things were discussed in Volume Two, and I'm assuming that like you say, Volume Three will be more novel stuff.

Linda Elsegood: The whole idea is to have every volume cover conditions that haven't been covered in the previous books, where we have the latest research, and we will have a section so the latest papers will be referenced at the back. I mean, we have every book, hundreds of references, and of course as time goes on, every year there are more papers coming out, which is fantastic.

The LDN Research Trust has been going over 18 years now, and initially, published papers were slow coming through. But every month there is something somewhere in the world. Somebody's done something, had something published. So it is gathering momentum

Dr. Saleeby: And Linda, I think really, with the last two years of us being in a pandemic, where a lot of focus has been on Covid 19 and what we can do for it with, let's say, off-label use of certain medications, and LDN. That's going to even push more research money towards researching LDN. I'm sure. Now that it's on the protocol,and it's like in the number one section of early interventions for long haulers, I think you'll see probably more and more papers. Actually, it should be exponential, in the number of researchers wanting to take this on and do more research, for sure.

Linda Elsegood: Fingers crossed!

Dr. Saleeby: So Linda, I've got a very interesting case that I saw in my office a few months ago, and this is actually a post-Covid vaccine injury type case. This lady, unbeknownst to her, had an underlying tick-borne infection. She actually had Lyme disease that was activated by the first dose of a Covid vaccine. I'm not going to mention which one it was, but it was a first in a series of two that she received. And within 48 hours of receiving the first dose, and then for the subsequent weekend, to two weeks thereafter, she suffered some neurological conditions that put her in a wheelchair. So this is a woman, and she was in her late 40s, and she was very ambulatory; didn't really claim any health issues. Next thing you know, within a very short period after her first vaccination, she was wheelchair-bound, couldn't walk, and had a very staggering kind of staccato that almost looked like a Parkinsonian kind of gate. It took her literally three minutes to get up out of the wheelchair and walk a few steps across the room to the doorway of my office. Now, we put her on a pretty heavy-duty protocol involving a few off-labeled drugs, but also I rapidly escalated her dose - she was never on LDN - but I placed her on low-dose naltrexone and escalated her dose pretty quickly, because I knew time is of the essence here, and I didn't want her neurological problem to progress. And during that time, it was when we discovered that she had Lyme disease as an underlying etiology, and it was just exacerbated by probably the spike proteins in the MRNA vaccine. We were able to get her rapidly up to 4.5 milligrams, which she tolerated very well. And the second time I saw her, she had transitioned from a wheelchair to a walker. On the third visit, which was a month later, she was using a cane. Now she was able to ambulate without the use of any help like a cane or even family members, but again it was extremely slow with her ambulation, and it looked kind of almost Parkinsonian in nature. Kind of like this leaning forward, kind of unsure, took her a long time to actually turn. But once she initiated the walk, she could carry on her day, and it was a little bit slow. But now I have not seen her back in about a month or two. She should have an appointment with me again soon, but I thought that was a pretty interesting case, where I think I'm pretty sure that the naltrexone had a big part to play.

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

Dr. Saleeby:  Well Linda, it's always a pleasure. Have me back anytime. It's always good seeing you.

Linda Elsegood: Thank you. 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.

 

Jill Brook, MA, LDN Radio Show 12 Dec 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Jill Brook, MA, is a long-time nutritionist, researcher and autoimmune patient benefiting from LDN.  After earning degrees from Princeton University and UCLA, she worked for both universities and the Pritikin Longevity Center before opening a private practice in Southern California. After experiencing serious health challenges of her own, she now focuses her research and nutrition work on autoimmunity, gut health, SIBO, mast cell activation, gastroparesis, and specialized diets for healing.

In this interview Jill discusses what we should be doing diet wise to help Low Dose Naltrexone (LDN) be more effective in our bodies. 

Topics covered answer the questions: 

“There are so many conflicting diets. What diet should people be following?”

“How would somebody who has never looked at their diet before go about looking to eliminate foods?”

“What about the blood test? Can they help show what foods you should avoid?”

“It's not easy to follow healthy eating. How does willpower come into this? What does the research show?”

“Could artificial sweeteners help get me off sugar?”

“How can I lose weight when I can't exercise?”

“Could digestive issues such as inflammation, leaky, gut, etc cause someone to have low sodium or potassium and vitamins?”

“For a patient with Mast Cell Activation and Autoimmune issues do you have any diet suggestions or inflammation information from your own experience that would help?”

Check out Jill Brook’s LDN Nutrition and Lifestyle page at https://ldnresearchtrust.org/ldn-nutrition-and-lifestyle where Jill posts recipes, nutrition research findings, a blog and LDN Lifestyle and Nutrition Q & A’s.  

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

Dr Leonard Weinstock, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

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

Dr Leonard Weinstock is from St Louis in Missouri and helps patients with GI Issues and other autoimmune conditions.

He first studied Clinical Pharmacology before going into Internal Medicine. His greatest interest is in Irritable Bowel Syndrome (IBS) and autoimmune conditions. In this interview he describes many conditions like Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Small Intestinal Bacteria Overgrowth (SIBO), and Restless Leg Syndrome (RLS). 

Also, Dr Weinstock explains how the brain-gut connection is vital in order to maintain one’s health and wellbeing. He utilises LDN to increase endorphins that help reduce inflammation, a common cause of many illnesses.

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

Dr John Kim, LDN Radio Show 07 Dec 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today we're joined by Dr John Kim. Thank you for joining us, John.

Dr John Kim: Well, thank you for the invitation, Linda,

Linda Elsegood: For those people that haven't heard you on our Vimeo channel, would you like to tell us what it is you actually do in medicine?

Dr John Kim: I'm actually in-between transition, as some people may know. For the last ten years, I've been working in Georgia where 50% of my practice is in pain management, and then the other 50% is solving complex medical puzzles; especially autoimmune conditions. I actually discovered LDN as a part of the second part of the practice, and the second part of the practice actually came about because I had wonderful techniques to help patients with chronic pain, except for patients with autoimmune disease pain. Those pains just were harder and tougher, and I had to change my paradigm and look for other tools other than what I had, and kind of open the door through LDN to treat the whole bunch of other conditions, especially autoimmune conditions with a great deal of success.

Linda Elsegood: Would you like to tell us what it is you have trained in?

Dr John Kim: So the original training in medicine began with family medicine, and I chose that because it was the most holistic of all areas. But I wanted to train more, so I actually changed my career to a speciality; to preventative medicine, and then from there I learned medical acupuncture, and then went on for a fellowship in integrative medicine with Dr Andrew Weil as a residential fellow. That kind of sums up my traditional training, but I've also done extensive basic science research in biochemistry and pharmacology.

Linda Elsegood: What would you say the outcomes have been for the patients that you have prescribed LDN for?

Dr John Kim: LDN for me hits even closer because the LDN originally was brought to me by one of my favourite patients. I'm not supposed to have favourite patient, but the patient is a favourite because she one day said, ‘Hey,I have this condition called Hashimoto's thyroiditis, and the prognosis is really depressing. I get to take medication and as Hashimoto's thyroiditis destroys more of my thyroid I get to take more and more, and you never get off it’. And she said, ‘I found something interesting called low dose naltrexone, and would you please do research?’ And I said ‘sure’ and when I did research about it, that was about ten years ago, there were fewer research articles, but even then, it really looked like the risk-benefit profile, meaning how much risk is there and how much benefit is there, was very, very limited; small, and the benefits sound so incredible. So, I prescribed the medication and what happened was that her disease went into remission, full remission, and did not require any further use of hormone treatment. Then what had happened was that within several years she got pregnant and, retained her baby, because before she was having issues with, I think miscarriage, and then she gave birth. And then after the birth, her disease returned, almost like Graves and we again used low dose naltrexone very successfully and helped the illness to go into remission as well. 

Linda Elsegood: And did she take the LDN throughout her pregnancy?

Dr John Kim: Yes. LDN through pregnancy is a very interesting topic and I had them talk to their doctor, but you know, part of the acupuncture practice I have, a small part of it is fertility. And I've noticed that LDN helps patients to get pregnant. For those I think who have issues with their ability to get pregnant it’s often coming from an autoimmune condition, and I think that LDN can reverse that.

Then I've seen LDN reverse endometriosis, and again, I think that a lot of the illnesses that we have seen have an autoimmune basis. We don't use the word autoimmune, what I like to use is the dysfunctional or stunted immune system. The immune system is no longer being intelligent, and I think the LDN corrects it.

That's why I think that LDN is such an interesting drug because LDN seems to be what we call an adaptogen, which means that it brings a system into balance. So if it's too much, it brings it down. If it's too little, it kicks it up. And I think that's how LDN works for from everything. From autoimmune diseases to HIV, to cancer.

And LDN, I think is like almost a class of its own, because it does so many nifty, therapeutic actions with some limited side effects. 

Linda Elsegood: What side effects have you noticed with your patients?

Dr John Kim: There are at least two people that I've seen that had a severely depleted state of endorphin.

They’d been ill for a long, long, long time, and their resilience is very, very limited. And for those people, I've noticed that even with one microgram of low dose naltrexone, they have a hard time taking it. And. If there was a homoeopathic pharmacy, I wondered if they could make a nanogram dosing of low dose naltrexone for these people, but these people are few and far between.

For most of the other people who have side effects, they find it easier to handle. Like some people, instead of it helping them to sleep, it has the opposite effect. So, if that's the case, it's pretty simple, they just take it at dinner time or in certain cases, I just tell them to take it with lunch or even at breakfast time.

Linda Elsegood: Well, we did have a question, which fits in quite nicely with what you're saying, and it's from Deb, and she has her own thyroid group with LDN, and she says, ‘have you seen a patient with a genuine allergic reaction, not just a side effect on  1.5 milligrams of LDN?’

Dr John Kim: So I think that the allergic reaction if they're talking about an anaphylactic reaction, that's probably due to the filler, not necessarily to do with LDN. As I said, the two people that I have seen a reaction, even one microgram, those people, I think probably had the reaction that they're describing, which is closer to an allergy, however, I've not seen the typical, what they call anaphylactic or IgE mediated response to naltrexone, and it's theoretically possible, but I just haven't seen it at this point.

Linda Elsegood: We have a lady called Lynn from Australia who has been using LDN for two and a half years for graves' disease in kidney neuropathy, and it’s inactive now, but she does have small, reoccurring, low-grade bladder cancer.

Her naturopath suggested that she should take a test to show nutrients, which would affect the cell line of cancer patients, so she's asking ‘would this test be worth having in regard to bladder cancer and LDN?’

Dr John Kim: I think that's a wonderful question, and it also happens to be a complex question. And the reason why I say this is that the low dose naltrexone effect on cancer, I think that is very beyond theoretical. I think that we are beginning to have case series of studies that would be the basis of one day doing a randomized control trial using LDN to use either as an augmented complementary to the conventional therapy or standalone agent. In terms of the nutrition testing, which is very popular we call this approach ’functional medicine’, within the integrative medicine spear. And in that philosophy of testing everything that you can pass on, or micronutrient testing, or even testing of the agents that are a part of the Krebs cycle, and testing those intermediate, biological functional markers to be useful.

And I think that to be honest with you, that the research just is not yet fully there. Spectracell is one company that will basically test different types of antioxidants and vitamins, and I think that it's a reasonable thing to do for cancer patients.

I would not recommend it for everybody who is in good health, but for cancer patients, if you asked me six months ago, I would say, I'm not sure, but I think that because cancer is such a debilitating and life-threatening illness because the conventional medicines alone don’t have full control over cancer.

Because even with LDN, looking at Dr Biharis’s study, that wasn't a hundred per cent. I mean, he did not get a hundred per cent either. So, I think that we have partial answers, but with cancer, we have room for improvement. I think that some types of micronutrient testing for cancer patients makes sense.

Again, that’s not recommended on a healthy person, but for cancer patients, because the stakes are so high, and because of the latest protocol by Dr Berkson, who combined alpha-lipoic acid with low dose naltrexone to help stage four cancer patients to go into remission.

So, if you look at that, then, all of a sudden what else are we missing? I mean, are there systematic studies? No. So then if there are no systematic studies, then you have to become a study of one. And how do you do that? Just like what the natural path is suggesting. I think that it is reasonable for cancer patients, but unfortunately not for everyone.

I think there's part of us that can be narcissistic and say, I want to test everything on you; genetic markers and nutrients, but I think that moderation is often a good way to go, but with cancer, I think that my answer has changed in the last year; the more I think about it, and the more I read, and the more new studies come out.

Linda Elsegood: Okay, we have a question from Christina, and she says ‘I have postpartum thyroiditis from pregnancy in 2011. My thyroid has never recovered and is very large with hypothyroidism. I do not have Hashimoto's. Should I start off at a very low dose because of my thyroid issues?’

Dr John Kim: So that's the wonderful thing about low dose naltrexone. Like I think I've shared earlier, the patient who introduced me to LDN, in the beginning, had Hashimoto's. But then she had postpartum hypothyroidism and LDN works for both, and some people would think, how can that be?

How can LDN increase the function of the thyroid and also decrease the function of the thyroid? If you look at it as LDN is an adaptogen for the immune system, meaning LDN restores the balance of the immune system, then everything makes sense. It's because the low dose naltrexone can increase the overall balance of the immune system that it can help with hyperthyroidism. It can help with hypothyroidism because the mechanism in both cases is exactly the same. Decrease the abnormalities within the immune system, and it does this it seems through glial cells binding through glial cells to There is a certain type of receptor that is responsible for releasing pro-inflammatory molecules. So, LDN binds to that site and does not allow for the release of inflammatory molecules. So, I think that the answer would be yes for somebody in that area, who is capable and is familiar with using LDN for those circumstances. And the other thing is that in such circumstances, I think aggressive testing makes sense.

So for me, if I had patients like that, I’d keep a very close eye on them, and I would test them even monthly to see what their labs are doing.

Linda Elsegood: Oh, she then goes on to say that she's actually been on LDN 1.5 milligrams and she had to take it every other day in the morning because she got very jittery.

She said she built it up to 1.5 milligrams daily and felt better. But then, after three or four weeks, her symptoms suddenly came on strong. She says, ‘does LDN bring out the disease and make you worse before you get better? Should I increase if I start to feel worse? And how long should I expect to feel worse before I start to feel better?’

Dr John Kim: I think that it's very rare. With my patients, I have seen or heard of those reactions. And I think that in one of the emails you sent me, I think that person had a similar reaction, were that there seemed to be a sudden release of catecholamines, which means molecules like epinephrine norepinephrine get released. And in such cases, you really have no choice but to go slowly, and to utilize incremental increases. I think whenever people have like a complex reaction, I will recommend them to consider having more than the standard use of LDN. I would say, you need to use more of a shotgun approach and utilize multiple assets. And I think that seems to be a good example because she's having a complex reaction; it's not a typical reaction. And so, for that, more diagnosis is needed, to see if there are any kind of issues of catecholamines being higher in her body than they should be. There's a test that they can do over 24 hours of urine collection. They can measure the overall amount of catecholamines in the body, and that indicates other problems that can be present. But if she wants to solve the issue, I think the best thing to do is branch out to other tools, and that's where I really love having more than just one tool. So, for example, I would use the LDN, I would use acupuncture because it also increases endorphins and decreases inflammation. Supplements that can also reduce inflammation, as well as immunotherapy that I talked about and those five things are what I recommend people to try before going to the conventional medications. In some cases, I see that even combining all those is not good enough, and then they have to use number six, which is conventional medications and conventional approaches. I think that it's just important that conventional medicine is not our enemy. It is neither a friend nor an enemy.

It's supposed to be our servant. We don't want it to be a master. We don't want it to be a dictator and create all kinds of problems.

Linda Elsegood: Okay. Well, we'll get ready to go into a break. If anybody out there would like to phone in and ask your questions to Dr John Kim, if you want the numbers, just go to www.ldnradio.org.

Linda Elsegood: Now we will take a call. Hello? Can you hear us?

Caller:  I can hear you, yes. Can you hear me?

Linda Elsegood: Fantastic. I can indeed. Yep.

Caller: Getting that somehow, right. Well, I refer to the guy that Dr John said had had a cancer diagnosis three years ago, bowel cancer. I haven't been using naltrexone yet, and I've had some chemotherapy, but on-base occasions I had Capecitabine to start with, and then I had Fluorouracil, and both of them threw me into A & E, so I've gone off the idea completely of conventional, well, what's it called? Chemotherapy. I'm just looking for alternatives. We've changed our diet. We’ve done all sorts of things and are feeling very positive, but just want to find out from you whether you think that I can be helped by LDN.

Dr John Kim: May I ask you what stage of cancer you were diagnosed with?

Caller: Oh, I think it was one.

Dr John Kim: So, then you are cancer-free at this time?

Caller: No. I had a CT scan a couple of weeks ago in November, and that showed that the tumours that they found, that showed up in April, have actually got bigger on my liver and in my right lung. I did have an operation to remove tumours from my left lung. So, I had the left upper lung removed and also I had about 30% of the liver removed.

Dr John Kim: So, when cancer that starts in one area goes to different areas such as liver and lung, it’s considered metastatic or stage four cancer. So the use of low dose effects for cancer that I've read about and that inspired me to use it actually are twofold. One is the original physician who made it popular or known to use LDN. Dr Bihari used low dose naltrexone for treating cancer very successfully and he had documented it. Now there's a second physician. Dr Berkson, who is in New Mexico, who is utilizing low dose naltrexone and alpha-lipoic acid, and in his case he does injections very successfully. So both parties have written about it. Dr Berkson has published his work. So, right now, all of my patients that have cancer, who come to me, pretty much, I recommend them a protocol of low dose naltrexone as well as alpha-lipoic acid, as well as other supplementation.

Now as for stage four cancer, fighting it just using low dose naltrexone generally, you know, I don't recommend it. I recommend using all the tools that you have because of the grade of the diagnosis. Using all the tools is what I recommend. Now, having said that, Dr Berkson does have documented patients who have used low dose naltrexone, and alpha-lipoic acid and the other protocols that he utilizes.

And my recommendation is to find someone near you who has utilized that protocol to success.

Caller: Wasn’t it Professor Dalgleish in the UK?  He's been fairly active I think in the LDN and cancer field. Have you come across him?

Dr John Kim: There's also Professor Liu, with whom Linda has connected me with. And you are part of the LDN research trust on Facebook, right?

Caller: No, I don’t do Facebook.

Dr Kim John: I'd like to highly recommend you to join. It's a really wonderful community to ask other people, especially in your circumstances. In general, I recommend for patients for fighting cancer for integrative medicine, low dose naltrexone, to use all the tools that make sense to them at their disposal. Because really, in my experience at least with stage four cancer, it's really difficult to make peace with stage four cancer. Cancer wants to grow, continues and there is no 99%, it has to be a hundred per cent because if you leave even 1%, it's alive.

It will double, and double. We call that tumour burden, and after the tumour has grown to a certain size, it puts a tremendous amount of burden in or way.

Linda Elsegood: The next caller now, if not, we won't have a chance to get through the queue.

Caller: Oh, sure.

Linda Elsegood: Okay. Thank you. Thank you for your call.

Caller: Thank you very much, Dr John.

Dr John Kim: Yes sir.

Linda Elsegood: Okay. I think we have another question here that may be cancer. Hello? Hello? Are you there?

Caller:  Hello? Are you talking to me?

Linda Elsegood: Yes, I am.

Caller: Okay. This is still us. No, this one wasn't cancer-related, but I can probably find one if you want.

Linda Elsegood: No, that’s fine.

Caller: This is about mast cell activation disorder, and if Dr Kim has ever prescribed or treated anyone with that condition. Has he prescribed LDN?

Dr John Kim: I have not seen one prescribed as such, but I've seen many patients who have the symptoms of this, and I think mast cell activation disorder is closer to what the physician's call IGE, mediated allergic reaction. You know, the mast cells release histamine, and some of the interesting things about that are the speed at which it can occur. It’s very rapid. In some people, you just have to scratch their skin, and you can see a welt developing very quickly.  Is your symptom like that?

Caller: This is a question and from a group member. Not me personally.

Dr John Kim: The answer is that yes, I have utilized LDN, but the utilization of LDN in such cases is an excellent question. I think LDN is a wonder drug for autoimmune diseases, but I don't think LDN, in many cases, should be utilized alone; like the previous caller wanted to use LDN for stage four cancer.

I think that of course, it can be done, if he can find a physician willing to do it, but I think that the better approach in this case and I’ve had patients with similar symptoms, is that LDN combines wonderfully with another immunotherapy, which is more common in Europe. It's called allergy drops, and what you do is you test the person for offending agents from the environment, as well as food. And mostly if IGE with food IGG can also be included. And the wonderful thing about is once you are armed with information, what things can trigger them, you can utilize allergy drops and LDN together to allow the immune system to be reeducated.

So, I'll give you an example. One patient came to me with a mast cell activation, and hers would begin with eating fruit, whatever kind of fruit, she would just not be able to breathe. And she loved fruit, but for ten years, she couldn't eat fruit. And so, I put her on LDN, and it made her symptoms a little bit better. In a year of allergy drops plus

LDN she was able to eat fruits again, and she has no reaction. So in that case, can you get that reaction just by using allergy drops? I think it's possible, but usually allergy drops alone it takes five years. Whereas in this case, within less than a year with both LDN and allergy drop, we were able to get that rapid reaction.

So, I think that LDN is a wonderful tool. Anytime the immune system is not behaving, if it’s hyperactive or sluggish, I think LDN is a wonderful tool, but I think there is this idea, a temptation almost, to view LDN as a single agent for everything. I think that everything has a tool and for some of the patients that have had severe symptoms, I'm not afraid to use LDN and Montelukast, which is also sold under the name of Singulair, and is a prescription medication, or some of them I ask to take Zyrtec and then the allergy drops. And the wonderful thing about LDN is that it seems to re-educate the immune system, so it's almost like an intelligent approach, and it compliments the allergy drop because that is also an intelligent approach.

Caller: Understood. I guess this question probably has the same answer. I’ll just ask it in a different way. Can LDN work to help histamine inflammation? So, would that basically be the same answer?

Dr John Kim: Well, I think the answer is, I think, that I would be more careful to use histamine because what we’re talking about is that what happens after the mast cells have released histamine. So, in this case, what you're looking for is rapid response. Can LDN be used to stop an anaphylactic reaction? I don't think anyone has done the study, but I don't recommend that clinically. If someone is having an acute reaction, I think the proper response would be either Benadryl shot or Benadryl liquid.

Caller: You use the word inflammation. I don't know if that's different from a reaction.

Dr John Kim: The histamine inflammation is very rapid, and I would say if you're in that rapid phase of inflammation and the answer, I think it's similar when you're having rapid phase reaction of inflammation, I think that you have to use all the tools that are required, including steroids,  in case of histamine reaction, an anti-histamine, and then use LDN long term to get gain control. And we basically create another equation, change the equation because LDN can change the basic equation, but at the time, the house is burning down. You want to use everything. LDN is a wonderful tool to redesign the infrastructure so that the immune system just only has one response, inflammation, inflammation, inflammation. LDN can change that, and it's very interesting, because people who have a reaction, in that situation, often their immune system is actually depleted, so that means they get sick easier.

I tell them that's very similar to police being told by naughty teenagers twenty-four-seven that they can't do their job. Whereas the well-rested, police force can respond to emergency calls quite adequately.

Linda Elsegood: Okay. Yes.

Caller: Thank you.

Linda Elsegood: Okay. We're back. And what I would like you to do now John, is could you answer some of the emails that were sent in, please?

Dr John Kim: Absolutely. I really love the questions from your readers or your Facebook group members. They are just so intelligent and wonderful. One of the questions that I had was from a patient who was diagnosed with pancreatic cancer.

She's taking Tramadol for pain, and clinic basically is agreeable to put her on LDN. I'm sorry her or him. But the thing is that they want the person off Tramadol and the person is asking what do you do? I've often seen this sort of question regarding Tramadol or Ultram, which is a brand name and is basically a form of synthetic opioid that's not a full-on opioid. What I mean by that is that it's got two different activities. Number one is that it does bind to the mu-opioid receptor, but it also works as a serotonin and norepinephrine uptake inhibitor.

And I think that it seems to me that this has multiple answers. So, part of the answer is that if the clinic says no, you can't take LDN and Tramadol together, I would say that the person can explore a herb which is very effective, known as corydalis. Corydalis does not use opioid receptor but has high effectiveness for controlling pain.

That is my go-to herb to control pain. The secondary herb can be something like curcumin, and especially if they can find long-acting curcumin, it can be helpful for controlling pain. Another tool that I find exceptionally well-suited that works in conjunction with low dose naltrexone is what I call neuroanatomical approach to acupuncture and is a new way of using acupuncture using scientific principles. And it works on strengthening the endorphin system and reorganizing the neurological signals that are pain prosthesis. The underlying question to this is, can you combine narcotics and LDN? And I think the answer is yes.

I formulate this from research done using what we call the microdose, dosing of LDN. So instead of using the normal dose, LDN use is 1.5 milligrams to 4.5 milligrams, but in micro-dosing, you use microgram doses. A thousand times less than one milligram would be one microgram, and that, even in my clinical use when people are using narcotic agents, my to-go game is to utilize a microdose gram dosing of LDN, and it seems to actually help patients to get pain relief longer. Then what I do is increase the dose of microgram dosing of LDN to push it up. And then what happens is similar to them not taking the medication you're just doing backwards.

By increasing the inhibitor strength, you're basically taking down the amount of narcotic that is effectively available and just two different approaches. But I think that it's more humane and I'm not convinced, because the effective dose for the naltrexone to overcome narcotics is about 5,200 milligrams anyway.

I don't think adding 1.5 milligrams or five milligrams will make a difference in the majority of people. Now I have to say, that because I know that in literature, there are people who are exquisitely sensitive, that even utilization of anaesthetic during surgery didn't work. They had to use massive amounts, and then at the end of they said, what on earth is going on with you? Why is it that I have to use massive doses on narcotics? They say ‘oh, yeah, I'm taking the LDN’. And so in that case, you know that in those people the LDN, is working so well, or probably what is happening to those people is that their affinity; the LDN attraction to the receptor, is exceptionally stronger than the general population.

But in general, I think that LDN, especially micro-dosing naltrexone or very low dose naltrexone, is safe with utilizing narcotics. I think that was a wonderful question.

Linda Elsegood: Do you have time to answer another one?

Dr John Kim: Oh, yes. Oh, there was another question of RSD or the CR, complex regional pain syndrome. That is a really heartbreaking condition.

‘My neurologist started me on 3 milligrams, then 4 milligrams and then 4.5 milligrams. I had some pain relief for six weeks, but the burning pain has returned to the same level. Do you know? Is there a reason? Is this a typical reaction? Do you agree with my doctor’s opinion that I would get more benefits after five months?’

I think that it's, it's kind of interesting because 1.5 milligrams to 4.5 is like the standard, and that's written in stone, but if you really dig in and do the research, those response studies that were performed on low dose naltrexone was sort of a convention developed over time, accepted by researchers. But I think that there are multiple ways low dose naltrexone works, and one way of course, is that it works through the immune system, and I think that the dosing of 1.5 to 4.5 often works quite well.

However, there's another way that LDN and especially for CRPS and neuropathy that LDN can be helpful is that LDN also works as an anti-inflammatory agent for the central nervous system. What that means is that in that setting, the dosing of LDN is going to be more dose-response curve, what I call linear response.

What that means is that depending on who you are, you will need more than 4.5mg. I had patients who needed six milligrams, and who do very well on 6 milligrams or even 7.5 milligrams, and obviously, I don't start a patient on that. I titrate them. And if you look at the original dose of medicine being 5 milligrams, I think even 9 milligrams is not unreasonable for the minority of people, but I think that rather than waiting five months, what I would do is push the dose to 5 milligrams and then 6 milligrams to see or and 7 milligrams to see if that's helpful. The other part is that CRPPS is a nervous system disorder, so alpha-lipoic acid would be another tool that can be very helpful, also taking a very high dose of fish oil also can be helpful, but taking a high dose of fish oil can result in bleeding episodes or even bruising episodes. So, it would be better if you are under the care of a physician or a naturopath who is familiar with that. With alpha lipoic acid you also have to be aware that you can lower your blood sugar levels so that's another a thing you have to watch out for. 

Linda Elsegood: Something we were talking about before. How important is diet?

Dr John Kim: You know, I think that there is again a very romantic idea that you take LDN and it's like a magic bullet. It works for everything. I think that diet is important because of the way that that LDN works. You know, in my own practice, what

I do when I take in patients with autoimmune diseases, in the beginning, I just say eat well, and patients would not listen, and the minority wouldn’t.  So now I just do the full food allergy testing because that way, I can see, and show them, and then lead them to not eat these groups of food.

And second, we need to do allergy drops to normalize your response to that food because obviously it's not killing off our population, but I also would say that there's something that has changed, that our people are having autoimmune diseases. It’s like an epidemic. You know this is everywhere. Everyone is having an autoimmune condition. Why is that? I think it has to do with we're doing something different. Has our genetics changed in 50 years? I don't think so. What has changed? Our diet has changed, and our pollutant exposure has changed. So, I think that we will find more than a lot of the plastic exposures they were having, we’re going to find to be harmful to our immune system.

I think that research is just beginning on that, but diet I think, is important. Why? Because everything that happens in our body biochemically is predicated by what we eat, what we put in our body. Then if we eat anti-inflammatory food then our body will become anti-inflammatory. If we eat pro-inflammatory food then the end result is that we will be suffering from the high levels of inflammation in the body. So, I think that LDN is a wonderful tool: however, it does not give you permission to eat badly every day, smoke, and pursue an unhealthy lifestyle.

Linda Elsegood: We've just had a question come in, and it says ‘could you define allergy drops?’

Dr John Kim: So allergy drop is basically, I think that everyone has heard of allergy shots. When you have a severe allergy you give shots to people. It does work, but  I just don't like giving shots. My family members hate shots, patients hate shots.

So, what I've done, is looking for a solution that doesn't involve all shooting allergies. It makes sense to me that if it works by giving shots, it will make sense using the GI system because a big portion of our immune system is in our gut anyway. So, I've been looking for a solution to this problem for about five years. I found a solution.

I'm told that this is the more common approach in Europe to the use of allergy drops and allergy drop means that you, whatever your allergy, whether you're allergic to food or environment, you can create an antigen dose that corresponds to how much you're allergic to.

So, if you're allergic to huge levels, then you give them a minute amount of allergen, and then you systematically teach the immune system by exposure not to overreact. So, you can do that to peanuts, you can do that to wheat., you can do that to milk, you can do that for grass, fungus; the big thing that I see is yeast.

So that's the allergy drops that I talk about. I think that as I said, LDN and immunotherapy go hand in hand in my opinion, for autoimmune, and the reason is very simple; both of them are the intelligent approach to re-educating the immune system. And it seems the immune system is amazing because, that one patient I talked about that she was allergic to the fruit, what I found out was that she was allergic to grass. And grass, of course, is the cousin of fruit. So, I treated her grass allergy for about a year, and low and behold, she was able to eat fruits again, and I never went to even specific foods. I just treated grass, because that was the one thing that she was most allergic to.

So, it shows how intelligent immune system is. Of course, she was also taking LDN at the same time, which I think shortened the duration needed for her to go into remission.

Linda Elsegood: Well, I'd actually like to now talk about your LDN book that you've just managed to get published, and it's available on Amazon.

Could you tell us more about your book?

Dr John Kim: Yes, you know, it kind of began as my notes, because in the beginning, LDN was like magic. It would work. It would work. And I was almost thinking, why does it work? Why does it work? So, I started reading, and first, it was blogged on your website.

And then I just dug deeper, because of my research background I just went to the research databases and I would just read different studies, and understand better how low dose naltrexone would work. And of course, there are books already available. I think you were the editor in one of those books, but I wanted to go to the source and learn more.

And so this book is called LDN primer, and I call it primer because I feel like even after 15 years of using low dose naltrexone, I'm still a beginner. And in here I just talk about the history of LDN, and LDN as a noble anti-inflammatory agent for our central nervous system, which I don't think is utilized very often outside my clinic.

And then LDN for treating endorphin deficiency syndrome. Again, I'm looking at the conditions that LDN can treat as groups, so if you have an inflammatory condition for the central nervous system, LDN can be useful, even though it's not an autoimmune condition. LDN can be useful for people who have endorphin deficiency, and who knows if the bipolar disorder, depression, anxiety are a subset of endorphin deficiency syndrome, and I certainly treat it that way, and I have utilized LDN alongside an SSRI with great effect. And even a bipolar disorder with great effect. And then the other thing is LDN as Immuno adaptogen, and then I talk about atypical uses of LDN.

And then the last chapter I talk about clinical considerations of using LDN and share stories of my patients and my observations and ideas that I had, like dosing, you know, and how the dosing is determined. It's not scientific. It's been just supposition. I was just guessing. So then means we have the right to ask.

And what's really wonderful about your Facebook group is the interactiveness, and I see what they mean because some of the people start 0.5 and they think that's too much. I had to cut to 0.1 because.

Like in my practice, that's what I do. I look at a person and try to determine how much endorphin reserve do they have in their life.

If someone has high functionality, then I don't mind starting off 1.5 and then rapidly branch up, going up to 4.5. But if I get the sense that they are very depleted, I would start at 0.1 and then march slowly to get them to 4.5, but take my time doing it and looking for any side effects. So it's been a result of me wanting to understand LDN better and starting a blog and just continued writing.

And I kind of got caught in the web of interestingness of LDN, and I just couldn't stop writing and stop researching. And even preparing for this show, I found out there are more studies out now, and it's really a fascinating subject.

Linda Elsegood: I know a lot of people want to know how do they know how high to go if 4.5 isn't the sealing. How do they know that the dose is right for them?

Dr John Kim: Yeah. So, I think that again, understanding how LDN works is crucial. So, I call it two different dosings. One dosing is linear dosing, the other dosing is synergy dosing. So what do I mean by that? The synergy dosing; I'm referring to the LDN educating the immune system to calm down. So for most autoimmune diseases, I utilize LDN; the lowest amount of LDN required to put a patient into remission, or their symptoms into zero. So, in those cases, some patients are taking 0.5. if they're in remission. I don't want to increase it, because if their disease comes back, then I want to have a little bit of room left over to increase the dosing.

But if there are other people who have central nervous system issues, so I'll give you an example of what I mean by this. Neuropathy would be a great peripheral neuropathy. Diabetic neuropathy would be a great example. Or another example would be post-herpetic neuralgia, and LDN can do amazing things, but in those settings, we are not really counting on the LDN to reset the immune system, we’re using LDN as conventional medication, as an agent to create an anti-inflammatory effect in the central nervous system. And for that, I think that 1.5 to 4.5 dosing is a bit limited, and you have to look for ways to either make LDN work harder and then bring out the LDN synergy, and my to-go tool for that is acupuncture, especially the neuroanatomical approach to acupuncture seems to go very well with LDN. Another tool that I use routinely is alpha-lipoic acid. It seems it can enter the central nervous system with ease and works very well in synergy with LDN.

Linda Elsegood: I'm going to have to stop you there, John. We'll have to have you back on another show. And we really appreciate you being here with us today.

Dr John Kim: Thank you.

Belmar Pharmacy is a nationally respected compounding pharmacy. They compound low dose naltrexone, LDN bio-identical hormones. And accustom amino acids and mineral blends. They're based in Colorado and ship nationwide. Their goal is better patient outcomes through quality compounding, combining effective communication between practitioner, pharmacist, and patient.

Call +1 800-525-9473 or visit Belmarpharmacy.com.

Linda Elsegood:  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.

Gastroenterologist Dr Leonard Weinstock - 11th March 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today, I'd like to welcome my guest, Dr Leonard Weinstock. He's a gastroenterologist from Missouri. Thank you for joining us today. 

Dr Leonard Weinstock: You’re welcome. 

Linda Elsegood: I think you're going to explain to us about mast cell activation syndrome, and you were telling me that it's quite an epidemic now.

Dr Leonard Weinstock: The damage means a couple of different things. One of them is an epidemic that more people are being recognized with this disorder. I've actually spent a fair amount of time describing it in the chapter that I wrote for the second LDN book. And I think it's actually the first time that this subject has been in a book with a discussion of LDN. , I can tell you that for a fact. It's made an enormous change in my practice. 

Linda Elsegood: So how does somebody know if they have mast cell activation syndrome? What are the symptoms? 

Dr Leonard Weinstock: Well, it's a disorder of poorly controlled, hyperactive mast cells, which are one of the white blood cells in our body that causes symptoms in numerous parts of their body. This cell normally orchestrates good immune function and orchestrates how things heal. A normal blood vessel supply to deal with a burn or trauma event, or a broken bone. These things that come out of the bone marrow normally, and go to the sites where there's inflammation.

And then it basically becomes the conductor of the orchestra to say, okay, you guys do this. You guys do that. And all the immune cells and chemicals behave in the correct manner for the body to heal itself. 

But when the mast cell STEM cell in the bone marrow develops a genetic change, which then becomes permanent every time it activates the little mass cells that come from this and go out into the body, whether it be the gut, the skin, the nose or bladder, the vagina, the prostate, and then take up residence. It will result in a problem also, and the fat of body fat too. that look. It then creates a problem by releasing up to 200 chemicals or more, anytime it wants to, or activates because of a variety of triggers. that could include the food that we eat, the common ones being gluten, dairy, and histamine foods, including tea, coffee, chocolate, sardines, cold cuts including processed meats. So these things can activate mast cells. There are a variety of triggers that occur during a person's life that will activate, and I'll just talk about that in a minute, but I do want to say that this is a congenital disorder.

You inherit some abnormalities to some of the STEM cells in your bone marrow from your mother or father. Often there's a family history in these patients who have diseases and syndromes that nobody's ever been able to explain. So the mother of my patient may have fibromyalgia or chronic migraine. Or be the sickly person in general throughout their whole life going for decades and decades. And what happens is the baby picks up that genetic abnormality, a variety of things that occur in those cells. And then you start having some active symptoms as the baby. And that includes colic.

And this is a condition that's so common, but totally unrecognized by paediatricians that this could be an explanation for the colic and food sensitivity, rashes, eczema, migraine headaches, constipation, sensitive gut. As one patient just told me the other day, they always had a sensitive gut, irritable bowel syndrome. Again, the syndrome. I hate that word because it is something that is quite idiopathic. The doctors don't know what's causing it, but we really need to think a lot harder. 

And patients as young kids had a sensitivity to mosquito bites, they can have a big reaction and develop severe asthma or allergies, which then can go away. It may be at that point that there's some increase in the activity of the mast cells, STEM cells for some reason. But when a person reaches puberty, often things get worse with hormonal triggers. And these are the people who complain of severe menstrual periods, taking them out of school, severe cramps, severe bleeding. And others reported use of Benadryl or diphenhydramine, or suppositories to reduce this, with marked improvement in activation syndrome patients. And then during the teenage years, there's a lot of stress. Stress activates mast cell activation syndrome. Maybe that's a contributing factor to acne as a teen. Then as we go into adulthood, there are a lot of consequences of stress, the inflammatory stress of pregnancy, which can activate Mass Cell activation syndrome. Other conditions such as reaction to our immune changes to vaccines can play a role.

I have patients who are remarkably sensitive to heat. One woman goes out in the hot temperature of Missouri, and her temperature goes to 103, and her face gets red and puffy and swollen. She literally rolled into my exam room in a wheelchair and with the use of low dose naltrexone and other simple medications walked in the next time she came in.

And that was really a hard read but a gratifying situation for me to say,  she's made significant improvements. I do utilize LDN, a number of my associates, who are in different parts of the country use LDN as one of the first steps in treating this condition. The condition is normally treated by the use of antihistamines. You want to also use vitamins C and D, which stabilize the mast cell. It's important to cover your levels and try to get up to a high level, which is therefore anti-inflammatory, you know, so you want to use the sustained-release form of vitamin C.

There's less acidity by taking that. And also you don't get dips in your blood levels. And so the pain level is also important. The level of low dose naltrexone. I generally start with one new program and work my way up in terms of diagnosing somebody with this disorder, they have to have two or more classic mast cell activation symptoms.

And that could be simply irritable bowel syndrome. And stuffy nose. I have patients who have had limited symptoms like that, and they reverse and turn around just with simple over the counter therapy, LDN. But those who are more effective, and there are plenty of my patients in that regard, do well with LDN.

And, uh, if you buy the book, in my chapter you will see my outcomes data on patients who are treated with LDN. And it's dramatic in some patients, especially some things like brain fog, which is so common. People can remember words or abilities to work. Some cells are really destroyed, another neuropsychiatric problem with mast cell disease. There's going to be so many things that affect the body, including the brain. I'll go into that in a bit and tell you about a few cases, but I do want to finalize things about the diagnosis. We do like to get the chemical analysis, the mediator tests that help prove that somebody has mast cell activation syndrome.

So that would include their heparin level, which is unfortunately only available in some labs to be done in the ideal ultra sensitive way. That would be 60%, but the fact is, in the United States, there's only one lab that I know of that does this correctly. And in Germany a lab that does it correctly as well. 

 

 The histamine level is positive, and about 15% to 20% tryptase level, which is widely misunderstood by allergists who deal with this condition or other doctors who think they're dealing with AMCAS correctly, and they say, Oh, the tryptase is normal. That excludes it. Well, the fact is they're wrong. 85% of AMCAS patients will have normal tryptase levels. And there are three urine tests that can be run. Some people also believe that if you repeat the tryptase level during an attack, a significant elevation could be significant. The data to support that is not in the literature and this is a problem because following this guideline could result in getting underdiagnosed and therefore, undertreated. 

 

So I am investigating a number of conditions that are associated with Mass Cell activation syndrome. And just recently found that 40% of my patients add restless leg syndrome, 60% had ringing of the ears, and. 30% had small intestinal bacterial overgrowth. Bloating is a very common symptom of AMCAS, and therefore bloating especially immediately spontaneously is likely due to the effect of the mast cell, chemicals as opposed to small intestinal bacterial overgrowth or SIBO. This is an epidemic if you will. The range and estimates are 1% for the United States, and 17% of the German population has been estimated to have mast cell activation syndrome. So something's going on with our genes that allow these changes to occur early in life. Whether it's a methylation problem or there's radiation, I don't know.

But I think all these things need to be explored. I have patients who got a lot worse when they moved into a new home, and the entire block had radon  in their basements and they all had to get fixed. And radon is a naturally occurring nuclear material. So I think a lot of work needs to be done. We need to live on a healthier planet. And  God willing that will take place and pray for and do whatever you can to help. Thank you, Linda. 

Linda Elsegood: Oh, thank you. Wow. That's a lot of information there. So if somebody is concerned thinking they have mast cell activation syndrome. How easy is it to find a knowledgeable doctor who would know about these tests you were talking about? 

Dr Leonard Weinstock: The answer is very difficult. Now, you introduced me to a doctor in England, who's interested in expanding her functional medicine. I'll be talking to her in a few hours. This has got to start in medical school because otherwise, this is going to take 20, 30 years and think about all the suffering that goes on. There's a minority of people. We have a study group that has 160 doctors. It's grown from 30 doctors in a matter of two years to 160 doctors who are actively engaged with studying AMCAS, sharing difficult cases, getting ideas, and it's been a wealth of information. 

It takes doctors a very long time to learn anything new. Only if there's a drug that comes out, which is then FDA approved or approved by the EU for a particular disease because it actually has the potential of getting out there either through articles or believe it or not, drug representatives who are then able to come in, advertise the drug, advertise the disease or syndrome. But even that takes a long time. And since 2015, we have two drugs that were FDA approved. And many of the GI doctors and primary care doctors don't know about it or understand it. And again, it wasn't taught in medical school, so it wasn't taught in your residency. And many doctors are afraid to learn anything new just because they're overwhelmed by other things, and it's a problem. 

Linda Elsegood: As you can perhaps remember when you suggested I have had a SIBO test, how impossible it was for me to try and organize that. And I was thinking while you were talking, I really wouldn't know in England how we would go about having these tests. But if you're going to be talking to this doctor later, maybe she will take it on board and learn about it. 

Dr Leonard Weinstock: Theoretically the allergists know about it. It limits your allergist theoretically in the UK or elsewhere to know about mast cell activation syndrome. One of the problems in politics. Once you make the diagnosis, then everybody, their GP wants you to manage the patient. Now, these patients can have 48 different symptoms and in 11 different parts of the body and there is a lot to handle. They take more time once you tell the patient, okay, I believe everything you say, and I believe that everything is due to one little cell in your body.

Then, the patient is validated; finally, they don't feel crazy. And honestly, that's a big thing. The doctor who diagnosed this, winds up being the treating physician and spending a lot of time, emails, phone calls, et cetera. And so a lot of the doctors who are on our Internet study group, or actually what we call private or concierge type doctors who can spend an hour, hour and a half with the patient and an insurance model that works, especially your model that you have in the United Kingdom. That's hard to do, if not impossible. 

Linda Elsegood: Well it wouldn’t fit in 10 minutes, would it? 

Dr Leonard Weinstock: No. That's the problem. 

Linda Elsegood: If you manage to find somebody who would diagnose you, give you the tests, what is the treatment? I know you said about LDN and cutting out all the things in your body, in your diet.

Dr Leonard Weinstock:  I've got something online that they can look at, that goes to educate, diagnosis, basic treatment by the basic steps. One, two, three, four, diet. Symptoms specifically that many of those are prescriptions, but not all. So on my website, G I go after diets, a GI doc, They can type in the search area mast cell and see Mary’s approach, see some of the PowerPoints that are given. For me, as a gastroenterologist, this has been nothing but a game-changer. A game-changer because it helps me diagnose all the difficult patients that had been dumped. The routine gastroenterologists told them that they're crazy, or just given up and they wind up seeing three or four more and don't get answers. They get colonoscopy twice or three times and biopsies, but you're not going to see the cells. And if you don't test their blood in this special way, you'll never get the answer.

 

RESTART HERE So for me, this is a real market for both than out of that remarkable and makes me feel good because I can take the most dramatic case, which was dope, which was yesterday, where I have a patient that's severely affected, very severely affected, but she's getting better with aggressive medical therapy.

Mmm. But then I decided to ask her about her family history. And it wasn't quite clear. Yeah. Her mother was affected by, uh, some problems. Um, and I said, well, what about your children's to the big problem? And she became weepy, and she said, well, my daughter's had psychological problems all over life. And then she was 16.

She blamed me for this and that, and moved out of my house at 16 and cut me off from her life. Wound up moving in with the grandmother. And I said this could easily be neuropsychiatric disorder related to AMCAS. And if you Google, um, AMCAS and neuropsychiatric disease, you'll come up with dr and dr moulder and, um, report talking about all the disorders, including depression, anxiety, panic attacks.

Or even schizophrenia, things. They are caused by chemicals and not by nature, but nature, not by nurture issues. And I said, you know, um, to, um, Mr G, I said, you know, you gotta take this paper to your daughter, you've got to take this, uh, questionnaire. And I believe the questionnaire is on my website, the M C M R S questionnaire.

And take that and give it to your daughter and say, you know, it's not me. It's my genes that you received, and this could get better with simple medication. And I told her about a 17-year-old woman that I saw. Who has panic attacks and their eyes would glaze over, and she could be trusted panic attacks.

She had to stay home from high school for a year to try to get herself in line. The mom saw me he is diagnosed with, and she said as pleaded could see her daughter who had panic attacks cause she read about panic attack in the literature I gave her. And I saw her very nice person and not a lot of systemic symptoms that she would admit to, but she had this, uh, severe nature of, um, being nervous.

And, uh, so I gave her naltrexone. I gave her anti-histamines. I had her come back for a follow-up. Her blood tests were actually negative for AMCAS, but that doesn't rule it out. Good. 25 to 50% of people are going to have negative blood tests. And she came back in, and she was a new young lady. I mean, she was confident.

She was smiling. I mean, it was amazing. And, uh, she was so happy, so thrilled she was going back to school and going into college the next year. And things went great until college when she had a terrible diet, couldn't keep, uh, gluten-free. And, uh, so she came in, uh, at Christmas time and we talked about how she needed to modify our diets and tricks since that was the main cause.

For her slipping. So we had to look for triggers. But I mean, that's one of the greatest feeling things that I've done in 35 years of being a physician. Hmm. 

Linda Elsegood: That's a great story. You did actually have a request for people. Um, if they had a terminal pain, would you like to, to tell us who you would like to contact you.

Dr Leonard Weinstock: Yes. Um, so I'm doing a research project, um, trying to identify people with chronic abdominal pain who have had cat scans of their abdomen and been diagnosed with one of three conditions, mesenteric and they kill itis inflammation of the fed. Blue roasting, which is some information and, and contraction of the mesentery of the abdomen to the connective tissue that holds everything in place or the most serious, uh.

Uh, of the three related conditions, namely, um, rec retract tile, Mez introitus where everything moves and pulls in and fibrosis and scars down. So I'm looking for patients who have that, uh, diagnosed by x-ray and have been treated with the LDN for, you know, a variety of things. And, and that found and found relief.

Of their, uh, abdominal pain. So if you got that, uh, you can write to me at LW, at GI doctor.net similar to my website, LW, my initials at GI doc, T O R. dot net. That's specifically looking for patients, uh, who have had benefit with LDN for their abdominal pain and had one of those three conditions. Mesentery connect your riotous sclerosing, uh, medicine traits, and we'll track Tao lets him try this.

And this is basically something that, um, is per survey as opposed to coming to Missouri and seeing me. It's really for a survey. And then, um. Uh, you know, I think that some of these patients are going to be like, two of the patients that I've got in our practice that, um, are related to mast cell activation syndrome.

Linda Elsegood: Well, you're absolutely fine. You'll just like 30 seconds off the end of this show. So well done you, and thank you very much for educating us today, and I do hope people will contact you. 

Dr Leonard Weinstock: My pleasure. Have a good day. 

Linda Elsegood: Thank you. This show is sponsored by Mark drugs who specialize in the custom compounding of medications, assuring that the client gets the proper prescriptions for their unique needs and conditions.

They work with practitioners integrating knowledge and treatment of experts to create comprehensive health plans. Visit Mark drugs.com or call Roselle (630) 529-3400 field (847) 419-9898

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