LDN Video Interviews and Presentations

 

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. Today we're joined by Ray Solano from PD Labs. He's also a nutritionist. Could you tell us a bit of background about yourself?

 I am dedicated to getting out the word on personalized medications. We have a specialty pharmacy located in Cedar Park, Texas that's north of Austin, Texas. We focus on being able to help people in the community who have mold and Lyme conditions and autism so they can get special medications in the right dose for them. We have a full-size clinic, that lifestyle medicine clinic as well, to really be able to help people learn their nutrition balance as well. We're located in 48 states and soon to be in our brand-new facility here in Cedar Park. It is a 7,500 square foot building that will be able to grow with the community, to service them, because personalized medicine is going to be here to stay.

Wonderful. So what got you into pharmacy? 

Fortunately I've been involved in pharmacy since the early 70s. I have been able to really take medicine to a different level. l have a background in nuclear pharmacy, a very advanced technology at the time, and found my way back into compounding pharmacy over about 25 years ago, and realized that traditional medications are just not going to be able to serve people the way they're supposed to. Medications have to be personalized. Different forms, different dosage forms, different routes of administration. Previously I did a lot of sterile compounding. It is important for people to get better as opposed to just taking 15 or 16 different medications a day. Can you believe that some people still take that many medications? This is the reason why we started to be able to do this. We very recently expanded. We've merged with Hopkinton Drug, who's really been one of the leaders in low dose naltrexone for years. We merged our companies together and are able to give first class service and quality to all the patients nationwide. 

You were saying about people taking 16 drugs. I've known many people who start off with two or three and then they would take the fourth medication and of course every drug carries a list of potential side effects. You probably will never get any of them or you might get one or two of these side effects, but when you start putting a cocktail of medication together, the chances of getting a side effect becomes higher. 

I know many people who have taken four or five, and then they have to take another medication to combat the side effects. As the number grows, then they're taking like seven or eight; they take another medication because they've got more side effects. It's really not helpful for the patient to continue down this route. Not only that but they still don't get the wellness they're looking for. Sometimes they get worse. 

Unfortunately their core metabolism just becomes nutrient deficient. Their core levels of metabolic rate decreases. They gain weight and their self-image goes down. They're also finding out that their ability in energy level decreases. Unfortunately we usually have a shell of a person. It is unfortunate but you know the worst part about it is there's no end in sight. This is why many times we get to the root cause of the problem and this is many times what we're finding in low dose naltrexone is a good starting point because then they can start to corral some of the problems and get people off of some of these medications. 

This has done an amazing thing in the pain community and the chronic alcohol community. It is just amazing when we start to unravel all of these chronic conditions of how we start with this therapy and we're able to really change people's lives. It also helps people wean off of opioids. It is a really big thing. 

What doses do you go down to? 

We go down to as low as one microgram. We were a sterile pharmacy so we can do micro dosing. We do a lot of vasoactive intestinal peptide as well. We are used to micrograms as well. Low doses are something we're familiar with. One of the things that we have done that's unique is being able to take these doses and be able to make a special tablet. It is the pharmaceutical industry that uses these ingredients, but they call a cyclodextrins to be able to enhance absorption through the cell walls for these pharmaceuticals take these large molecules and give them a little bit of it an accelerator for the body to absorb them. We use these beta cyclodextrins and we make them into a special tablets so that patients could be able to change the dosage for themselves. Being able to get to the drug we get the right amount of drug and have the least amount of side effects. You know many times when people take low dose naltrexone they start in one dosage form, in a capsule form. Usually sometimes 0.25 milligrams or a 0.1 milligram, and then they have to titer their way up, and then have to get another prescription. They have to get a different strength. This is a way that people to take a half of a tablet and get started and then be able to use the full dose three four weeks from now. It ends up being less expensive for the patient. 

Special technology is making tablets, which is a specialty in itself. We feel that we’ve been doing it for the last 10 years and we were able to really make a difference in getting the best therapy tablet for patients. 

Can you do a sublingual LDN? 

Yes, we can do sublingual drops. We've been doing that for patients, especially children and some of our seniors. Being able to master all these dosage forms for patients is something that specialty pharmacies are able to offer for patients. Sublingual tablets, sublingual drops or something that is very important for many people. 

Dr Jill Smith discovered with her Crohn's patient that taking sublingual drops, that it was absorbed, bypassing the stomach. It was more effective for those patients. There are other patients now that are choosing the sublingual. We find that sublingual is more expensive in the UK. I don't know whether different dosage forms at your pharmacy are more expensive than others. 

We are specialists in these sublingual tablets. We've been doing oxytocin sublingual for many years, and being able to use these tablet forms and to able to change up the bases that are absorbed, special ones, sublingually is very easy to do. It's not really more expensive at all, not that I have seen. Sublingual routes and nasal sprays are just a great way to bypass the stomach, because many of these patients are having a very difficult time absorbing. We use the special tablets, they get absorbed sometimes much better than capsules. 

Do you find the nasal spray helps with dry eye? 

We haven't seen very much of that. We definitely think that nasal sprays bypass the blood-brain barrier with special additives. They get absorbed so much faster. Unfortunately we haven't seen a huge increase of that here in the US yet. It is something that we're going to be promoting. because there are so many patients who would like the LDN eye drops. but because they have to be made in a sterile facility they have to be made per patient. There's not a shelf life on them. They are probably expensive, too. It makes the unit price exorbitantly expensive 

I've yet to find out myself and I've not ever tried any LDN nasal spray. and I suffer with dry eye that the nasal spray possibly could help the dry eye because it goes up the canal. 

We've made low dose naltrexone nasal spray in combination with ginsenoside R3. It's a special neural regenerative compound to stop the combination of brain inflammation. We've done a combination of those and launched that about two years ago. We have the experience to be able to do LDN nasal sprays. It's a very stable compound. It's very easy to work with. It has good dating for patients so it's something that they can be able to put in the refrigerator and be able to hold on to it for many months. That makes it economical as well which is important. Sometimes these medications can get quite expensive. 

What would the shelf life be on nasal spray be if you kept it in the refrigerator? 

Many of the regulatory law requires studies to be able to give the dating information, but we have found that at least 30 days is a minimum. We're looking at expanding that to 90 days stability. It's something that we're looking forward to. 

One of the things I didn't mention is the topical form of low dose naltrexone for many different dermatological conditions. Conditions such as eczema and psoriasis. It is a perfect additive of oral and topical as well. It's very stable. It's really important to get to the right pharmacy that understands the correct technology of being able to get penetration through that dermis skin layer. That's something we've really worked on extensively and looked to have tremendous results. I have spoken to dermatologists and pharmacists to compound LDN in topical as well as the capsules or tablets. Some doctors use both in conjunction with each other. For some conditions they prefer that people just take oral. 

The doctors that you deal with, what would you say is the most common for dermatological? 

We have a special relationship with our practitioners. It's a collaborative practice. We look at the patient to see what's best for them. We look at a case-by-case basis and they ask our opinion what's the best choice for the patients. Many times, by the time they come to us, these people, the patients, have conditions that have been ignored by many years. We'd like to be able to be aggressive at first. We recommend a combination therapy initially because it seems that they can turn it around much quicker as well. I found speaking to patients who take it for let's say psoriasis, alopecia, Behçet's syndrome, Hailey-Hailey disease to name a few, that the dermatological conditions take longer to respond than autoimmune conditions as in Crohn's disease or MS, chronic fatigue. It seems as though it needs to get into the system for quite a few months. Sometimes it takes six months. 

People have told me before that they have reverse of symptoms. Have you found that to be true? 

Yes, it is really important to be able to have the technology to get past the dermis layers. PD Labs has really started a patented process for the use of transdermal Verapamil for Peyronie's and planters fibromatosis and Dupuytren's contracture. They are all the same fibrotic tissue disorders. We've really been able to perfect the absorption across many types of different layers of subcutaneous tissue to be able to get localized absorption at the source. We've been able to take LDN and put it with transdermal Verapamil for Dupuytren's. We find it to be incredible at how fast it works. It’s important to get the right condition to have the right special base that gets absorbed and penetrates, and there's a number of different products out there that have special qualities that can get very quick absorption. It's really important because you don't want people to suffer. You want them to be able to get quick absorption. Unfortunately many of these special bases can be a little bit pricey because they're very proprietary and they're very unique. You're pushing the limits of transdermal absorption that almost rivals the fast blood levels like an injection. To be able to get people turned around quickly we find that these patients do so much better with being able to target that area very quickly because you don't want to suffer for six months at a time. 

If somebody had alopecia would they have to rub the preparation on their scalp as well as taking it orally? 

That's what we recommend. We use a combination therapy because we're able to get blood levels quicker. All these topical conditions are usually linked to gut dysbiosis and many other conditions that ultimately are able to express themselves as a skin condition. Any type of skin condition we're looking to repair the gut first. We have a number of different peptides that are used to be able to repair the gut as well. Once we are able to do that the skin heals so much faster and that's why it's so important to do both. 

Would rubbing something in your hair which makes it greasy and then that makes you want to wash your hair more be beneficial? 

No, it doesn't have to be greasy. There's cosmetically appealing lotions that we do a lot with patients' hair. They don't have to be oily. They have to be somewhat moisturizing to the skin and not drying the scalp. You can get absorption and have that smooth cosmetic feel, because nobody wants to put on something makes their hair look greasy, especially women. There's no way we're going to be able to tell them that your hair is going to look greasy. They just won't do it. Because then you'd want to wash your hair, which would be pointless of putting it on if you're then going to wash it off. There's ways to do it, and you know, it's really important when you partner with a pharmacy who has a can-do attitude and has a big tool chest. 

What are the tools that we have available? We've got a number of consultants that work for us and we've got a number of patented medications under our corporate umbrella. So we're very fortunate that we keep on digging until we can find a solution. 

Does PD Labs make their own supplements? 

Due to regulatory compliance, we don't really make them ourselves. We design them and have a special dietary supplement manufacturer strategic partner that will fulfill, make those to our custom specifications. Many times we're able legally to put a prescription drug with some of these nutritionals so they can combine them together. Many times what we do is take nutritionals and combine them with the specialty FDA approved drugs to be able to solve many of these conditions. Many times we find things like traumatic brain injuries and stroke and many of these patients that we're able to target medications using this type of therapy. 

It is really important to look at the whole body and look at the whole patient because they didn't get sick overnight and it’s going to take some time to get them well. We put a little sprinkle, a little fertilizer, at the same time. 

When you make your tablets do you do capsules as well? 

We do capsules. We do lots of capsules. 

Are you able to put nutritional supplements in those if the patient wants ginger for example. I know some people request magnesium or whatever. Are you able to do that for them or offer advice on which you think is the best? 

We do. We've got a lot of requests for items when people feel that they are having a reaction to the fillers. Many times what we find is that the body is having an over expression of histamine. Many times this over-expression of histamine is due to a metabolic imbalance that is occurring because the body's mesenchymal immune system is offline. If we can turn those systems back on, then their histamine levels or responses are normalized. It's sometimes not the small little filler that's in the capsules that is causing their problems. It's the whole body's over-amount of histamine. We're just sometimes really careful you know, because the absorption of ginger, let's say we put ginger in with LDN, do we know how much LDN is getting absorbed? Or maybe that the problem is that if the dose is too high, then they're going to get some of those same side effects. It could be the dose needs to be decreased, so that we can really modulate those side effects. I find many people feel it's almost a sign of defeat that they have to go backward in the dosing. After listening to many of your lectures it's usually that the dose is too high. 

As you said at the beginning, personalized medicine is what suits that person. Some people have it in their mind they need to be taking 4.5 milligrams. They think they have got to get to 4.5. They will think they did so well on two and a half and then went to three and didn't feel quite as good and now they feel terrible. So they think they have to stop taking it because it doesn't work for them. If on two and a half you felt wonderful then it appears that was probably the right dose for you. You should go back and see how you feel on 2.5. It's not that you're giving in. It's not a case that you've failed to reach the 4.5, you should celebrate the fact that you found the dose that works for you. 

We found that many times people are taking capsules and when they switch over to tablets they say they felt so much better on the tablets or sometimes they say I feel worse with the tablets than the capsules. We have found many people get much more positive effects at one and a half milligrams and two milligrams as opposed to 4.5 milligrams. Sometimes there's kind of a bell curve that sometimes the 4.5 milligram is something that is not really the standard. It should be maybe one and a half milligram. It should be more of a standard because we only want the body to have just as much drug as it needs. Low-dose sometimes is better than higher dose. That's what we found.

It was really interesting talking to you. Can you tell people how can they get in touch with you? 

Yes, we have a website: PD Labs that's Paul David Lives, pdlabsrx.com. You'll find a huge amount of information on LDN and all the other specialty pharmaceuticals that we do. We've got a podcast and also our TV spots. We make it very easy for people. Our phone number is 888-909-0110. We're in the continental US right now. We're looking to see how we can do this internationally, but as you well know there's a number of customs and hoops we have to go through. We're not giving up on it. 

Well thank you very much for being our guest today. 

 

 

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. 

Dr Steve Zielinski is here today. Can you tell us who are you? What made you decide you wanted to be a pharmacist? 

I wanted to be a pharmacist because my dad was a pharmacist, and I liked it when he'd take me to work when I was a kid. I got to see him work and how he helped people. People really appreciated it. I wanted to do the same thing. 

How did you get into compounding? 

When I was in pharmacy school we were learning how to make stuff in the lab, and I was interested in making stuff. I like to cook a little bit, and compounding was just like cooking to me. That is what got me into compounding. 

Could you tell us what forms you make of LDN? 

We buy it as a bulk powder and we can make it into anything essentially. The forms of LDN we typically make are capsules, which are pretty standard. We also do a troche and we do a liquid, like an oral solution. Now we're working on transmucosal films. Those are films that you can put on the inside of your gum and it gets absorbed through the cheek. Some people complain about the troche taking a long time to dissolve and having to sit under their tongue for a long period of time. One of the things that we've started to learn to make are films that go on the inside of your gum or on the inside of your lip, almost like chew or something similar. It then gets absorbed through the skin. 

Did you learn about LDN in pharmacy school? 

I learned about naltrexone in pharmacy school. I heard it was great at 50 milligrams for treating alcohol and drug dependencies. I never learned about it at the doses that I'm using it for or the conditions that we're seeing it be beneficial for in pharmacy school. 

So how did you hear about LDN? 

Being a compounding pharmacy people would ask me, "Hey do you make low dose naltrexone?" That’s how I heard about it a lot of times. I often hear about things from other people that are wanting to learn more about it. Then it makes me learn more about it; or I get stuck in a position where I need to learn more about it because I don't know much about it, to be honest. I definitely don't claim to know everything about pharmacy, or medicine, or drugs, but when I get a question and I want to find out the answer I go and look it up. That's what I did. That's how I got started with low dose naltrexone. 

How long ago was that? 

I want to say close to five years ago. People were coming in looking for it for different conditions, and specifically pain, and I suggested this because it is low dose, not habit forming. I thought I'd give it a shot for somebody. We did and it worked. 

How many patients do you think you have on low dose naltrexone right now? 

Probably about 30 or so patients on it. 

How many doctors are sending scripts to you? 

About 10 or 11 right now. 

If you have 10 or 11 then they haven't got many patients each on LDN. What would you say is the stumbling block for them not to prescribe it more widely? 

I don't think they're aware of all the different things it can be used for. I think that's the biggest issue. I think the biggest stumbling blocks are having a good understanding of it for what they could be using it for, and then I think another stumbling block is the dosing of the medication. There's not a package insert that comes with this like there is for every other medication. You can't look this little drug up in the Physician Desk Reference and see how you prescribe low dose naltrexone. 

That's not there, but you know if you look up naltrexone, you're going to see a 50 milligrams dose and how to use it, but you're not going to see the different doses that could be used for in a different dosage forms. That's available from a compounding pharmacy. I think that's one of the hindrances that we see with this medication being prescribed. 

Did you know the LDN Research Trusts have three guides on our website. 

Those are great references that I'd love to make available to the prescribers that I work with. 

It's on the LDN Research Trust.org website under resources called LDN Guides that might be a benefit to you and your doctors. Many pharmacists that have been doing LDN for many years will have a seminar in their pharmacy and have an evening where they invite doctors to come. You give them a presentation and explain it to them.
Can you explain what conditions LDN could be used for treatment? Pick a couple and give some case studies. Tell them that you are available to answer their questions. I'm sure there are thousands of people in your area who have either chronic pain, mental health issues, autoimmune disease or cancer. The number of people you know that could be using LDN is endless. Anybody who's in your area who would like to help you expand the client database to get more doctors prescribing LDN in your area would be amazing. It would be great to see yourself grow. 

I think we end up using it as an option a lot of times when other things fail. I think that's how we get people started on it for the most part. The most interesting one has been with hair loss post COVID. I think it has been really interesting to see when people have been having their hair falling out. Whether it's from having COVID or exposed to COVID or don’t know what it is, I don't know the diagnosis but we try treating hair loss and nothing's working and then we try low dose naltrexone and it works. It has been a new one for me. 

Having COVID happen and the pandemic and everything has been a springboard for low dose naltrexone because LDN works so really well for long COVID. There are two chapters in the LDN Book Three that address long COVID, and you can hear Professor Angus Dalgleish saying that he's a cancer oncologist. He also is a virologist. He treats people with long COVID and he says that it should be a first line of treatment because patients do so well on LDN. He said some people have said it's placebo and that there's nothing to this treatment. He says that once they stop LDN all their symptoms come back. When they restart the symptoms go away. You then know it can't be placebo. It should be a first line of treatment. When people have COVID, you know they are worried about getting long COVID. They should take LDN. It really a game changer for them. There are people who have had chronic fatigue for years. Years ago they were dismissed as being imaginary or told it's depression. There is nothing wrong with you. Deal with it. Now COVID has come along and some have similar symptoms and all these people are saying who've got long COVID. Fatigue is terrible. It's absolutely awful and that's been around for a long time. People who had it were not believed. I think it is going to raise awareness that will help people with chronic fatigue syndrome. People recognize it as a condition and not just an imaginary condition. 

You said with chronic pain, are people using it to wean off of opioids? Are they using it once they're off the opioids? What I'm trying to say is, are you using micro-dosing LDN alongside of opioids to get patients off the opioids? 

Yes and it's really interesting to see because there's a lot of hesitation and nervousness by the prescribers to do that, because but it's such a low dose that you can wean somebody off of opioids and morphine with it. We've been successful with it and it's been pretty neat, because when you're dealing with long-term chronic pain, to use something that doesn't cause you the side effects, constipation and things like that, on top of the opioid addiction. It's pretty nice to have that in your in your toolbox as not every doctor has that, because they have that tool in their toolbox they could use, but they hesitate because of not understanding how low dose naltrexone is going to work in combination with a stronger pain medication like an opioid. It always amazes me that there are people who have had chronic pain for 20 years and they have taken the highest dose of Oxycodone, they then have another fentanyl patch put on and they end up with this cocktail of pain medication. They have to take other medications to combat the side effects that these medications have caused and their pain is still a nine to a ten every day. This time they can't come off those pain medications. They're addicted to them, although they're not working and my understanding being non-medical that these high doses of pain medications are very bad for your organs. They are damaging themselves at the same time as it's not working. 

To actually take a micro dose alongside of those medications where you don't have to reduce the dose initially everything stays the same. You're not going to go through withdrawal. You're not going to feel your security blanket has been taken away from you, but it does make the opioids you're on more effective. That means you can titrate the opioids down while titrating up the naltrexone and people come off it and I'm happy when people say for 20 years they've suffered. They've come off the opioids. They didn't go through withdrawal. People say that they feel no pain anymore but some will say I still have pain but it's a three or a four and I know it's there but it doesn't stop me from carrying on to live a normal life. I can still achieve what I want to achieve. The pain isn't stopping me and I think from the LDN point of view that is just totally mind-blowing because you think of these opioids as being like a sledgehammer. The LDN being a feather, you think how can it properly be effective but you've seen it too. I have seen it and I think it's really very interesting because people don't just come off of their opiates when they go on LDN. 

That's where they start. They start coming off of their pain medications with the hardest ones first but then the longer and longer they stay on the low dose naltrexone more things can start falling off after that as well. It's really interesting to see the same doctors that are hesitant to start the low dose naltrexone for people on chronic pain medications to be the ones that would be the one recommending that and not the next pain medication. I had a patient that was on a morphine equivalent and maybe an oxycodone or Oxycontin or something like that at the same time for chronic pain and it wasn't going away and he was on there for about two years and then something about nerve pain was mentioned and neuropathy. I had recommended using low dose naltrexone and he used it and then the doctor started titrating the doses of these medications away and it wasn't just those two it was also other things. There was Topamax for pain that wasn't needed anymore. You're not just relieving a couple of medications, it's a lot of medications. It starts with a couple and we titrated it up slowly at the same time of weaning them off of one of the pain medications. Then once he was comfortable without one of the pain medications then he learned that he could also stop a second pain medication. This was a period of maybe six to eight months and over six to eight months that he was opioid free. No morphine, no opiates. Strictly just using low dose naltrexone with other muscle relaxants as well. Then a year later or two years after that he was even able to stop some of those. It's not just stopping opiates it's stopping other medications as well. 

I know some people who had fibromyalgia or who have fibromyalgia who were taking like 14 different medications a day and some of them have got down to just taking two or three including LDN. That has to be better for your system. The less medication you're putting in your body the better. Obviously medications are important when your body isn't working correctly and you are in a lot of pain. Sometimes if the necessary evil is but I think it's a good starting point to see what alternative dosage forms and treatments can do. I think that's what I really like about it is because I kind of play and not play, but I kind of work in a pharmacy where I'm doing both nutrient depletion compounding and traditional medicine. It's not one side or the other, but how do you use them both together, and I think when you can use something that can get an effect that the doctor wasn't aware about, or wasn't completely knowledgeable about, and it works, it starts getting people interested in their own health and seeing what else is out there. I think that's the best thing about low dose naltrexone. It's one of those things that does just that because it's okay what is possible because my pain was forever and now it's gone. I had to use these opiates forever and now I don't. Once you do this and they get that X they get exposed to that then they start taking their health in their own hands. 

The favorite part of this drug is people start taking control of their own health. They can bring questions and stuff, but ultimately they take control of their health back in their own hands. Doctors if they were listening to you and work out, I think that's something we do well is we only have about 30 to 35 people. I think low dose naltrexone, but I think that's one thing we do is we run into all those stumbling blocks, those challenges. We can make the recommendation that they should do it but it's something that their doctor ultimately has to make the decision on, and so we try to equip them, to empower them to have the right information in their hands. This is where it's worked before. How can I start trying this or how can I take this step? I think that's what we do pretty well. Not with just low dose naltrexone, but all medications. If a patient has a high blood pressure and they're not sure which medication is causing it, maybe they have two or three different blood pressure medications, pharmacists are in a great position to be the advocate of saying talk to your doctor about this blood pressure medication and see all the time these medications have a risk and reward. If a medication has more risk or more downside than the actual benefit but low dose naltrexone there is a lot of good literature out there. Whether it's a case study or a larger study on multiple people or case reports or controlled trials they're out there. The data's out there. There's plenty of evidence to support using it to where it's still evidence-based medicine that we're practicing. 
 

 

 

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

Today we're joined by clinical pharmacist Sebastian Dennison from PCCA. Thank you for joining us today Sebastian. 

Thank you so much for having me. Can you tell us about your role in the PCCA and how that involves LDN? 

PCCA is a company that helps compounding pharmacists realize the needs of individual patients by providing education training, as well as, components for compounding everything from equipment to specialized bases to specific bulk active pharmaceutical ingredients AKA drugs so to speak. 

As a clinical pharmacist my role is to consult with both technicians and pharmacists when they're faced with problems that they haven't seen before. PCCA has evolved over the last 40 years of their existence as well as our role as clinical pharmacists. We're now doing a lot more external education events, working with providers and external education providers. The LDN Research Trust is a brilliant organization and because we are the ones who are pharmacists compounding LDN we're getting more and more questions on it. 

In about 2014, 2015 I was given the role of educating a lot of our members on the evolving and emerging uses of naltrexone. It grew from there obviously because as I learned more I got more and more excited about it. I realized that there was a lot more to this fancy little molecule than what we had previously known and we're still learning every day.

What would you say are the main topics that you give when you're educating pharmacists as in conditions? 

I guess I always have to go back to my own understanding of most diseases. I have to understand the underpinnings of the pathophysiology and the drivers of disease before I can understand how any drug or any sort of therapy will have a positive intervention. This goes back to something called structure activity relationships. This is the bread and butter of pharmacy. If we understand how a drug works in a set receptor or receptor families we understand how that drug will impact the disease long term. 

Understanding both the disease pathophysiology and understanding how the drugs work give us insight and so what's changed is as we understand that naltrexone has more and more receptors that it works in and more specifically at this sort of very subtle dosing in the LDN and very low dose world. We understand how it can have differential benefits in these patients and so it used to be in the the late 90s it was MS, fibromyalgia and migraine. It has since turned into so much more. The big ones that I see right now are pain, inflammation, arthritis, fibromyalgia, MS, autoimmune disorders and now we're starting to touch upon things like anti-aging uses, mental health issues, adjunct care to other disease states and you know the big ones. Cancer is becoming huge. Dermatology it's enormous. More recently some new evolving uses that I've been discussing for a couple of years and a couple that I'm really excited to be presenting in the upcoming conference.

We had a fantastic presentation last week. I believe it was from a colleague of yours, Nat Jones, on Dermatology. It was a very good presentation, and we've also had a presentation from you as well. What would you say if a patient or a pharmacist says that they've got a patient who is really skeptical about trying LDN and he's worried what effects it would have on them? People who haven't really done the homework and don't really know the ins and outs of the LDN how would you get the pharmacists to address that?

The part of my role, because it's a clinical role, and ensuring patient safety is a priority, that always goes hand in hand with pharmacy ,but in the compounding world there seems to be this lack of information because we may be new to using many molecules in new and interesting ways. That's part and parcel of what we always do, is we look at safety. We look at information that's available and we also look at side effect profiles. 

There is a saying that you get in pharmacy school, no side effect, no effect. Dosing appropriately for the patient to avoid any side effects and to avoid harm. Those are the two crucial pieces that you have to start with when counseling any patient or any person who's thinking about low dose naltrexone. The scope of health has to be made aware of the safety profile. 

There was a brilliant paper that was published in 2019. The author was Bolton He discusses the side effect profile of this all-inclusive retrospective analysis and they had almost 11,000 plus patients and they were looking at it and saying that the side effect profile is very similar to that of placebo. Which is really an interesting piece because placebo effect is very common. Headache, tinnitus, nausea, vomiting, diarrhea. We actually use that as an indication that the patient is getting too much of something. This is actually part and parcel of a dosing discussion that I'll be having in a couple of weeks with the LDN Research Trust is understanding how dosing has to be much more nuanced and much more specific. 

We do have to look at starting low, going slow, titrating to a patient response. The difficulty with low dose naltrexone is giving a patient a stable dose. It may take up to eight weeks to see a benefit fully to realize just how much the patient has changed. We know by the side effect profile very quickly whether or not we're giving them too much or things are going the wrong direction. An exacerbation of their symptoms or a worsening of their symptoms or I'm getting headaches that I didn't get or my sleep disturbances are so bad I just can't sleep at night. 

Those are all signs like I'm giving too much; as a clinician and I can decrease the dose. One of the biggest problems that we see is with providers they’re thinking some is good more must be better. They do this very regressive increasing of dose and I think that's the part where we really have to focus on in the low dose naltrexone world is lower doses starting lower titrating more individually because what we're starting to see with this proliferation of use is much wider dosing parameters and we're seeing doses go all the way up to 12 to 15 milligrams in some patients and as low as 0.1 milligram and others. We don't know until we start with the patient. The last thing any of us ever want to do is see a patient come to harm or or have any negative consequence because they're already sick and they're already having problems. This is why part of my job is convincing people to start at a lower dose and titrate a little bit slower. Just to make sure that we don't go past their need point and help have the patient give us that feedback. 

That's one of the nice things about naltrexone is there is an incredibly wide safety margin. I think there's information out there where we have patients at 150 milligrams as a chronic ongoing dose for other purposes and high-dose naltrexone so to speak. Alcohol use disorders where they're taking 150 to 300 milligrams in a day. Low dose world isn't a concern of toxicity or harm. It's more not getting the right immunological modulatory response. That's the discussion and there is actually a case study where a patient ended up taking almost a whole bottle in one sitting. They were fine. They felt pretty chummy for about 24 hours but we're talking about 50 milligram tablets that I consumed, quite a few of those tablets. Our worry about harm is mitigated on the fact that we have much higher doses that are used for regular dosing naltrexone and most patients respond very favorably once we start initiating and when we see a, “Oh I don't feel right or it's getting worse,” that's usually a sign of too much. It's not going to harm you but we don't want to miss the nice response of LDN. That's the beauty of this drug. We can say to patients very comfortably, “Well the harm in trying is very minimal.” It's actually no physical harm or there's no consequence to the patient other than it may not work, as opposed to some drugs. If it doesn't work you may have some serious side effects and that we are very aware of. The discussion is very useful with other clinicians because in pharmacy, as well as, in medicine and any sort of healthcare provider is the risk has to be balanced against the benefit for the patient. When you're talking about a drug that has very minimal side effect profile especially the doses we're talking about with very small steps forward, it's a very favorable risk-benefit ratio, so to speak. Lots of benefit participation, very little risk. 

There you go in a nutshell. I mean some people, not myself, I must admit when you get medication from the doctors, not compounded, you know off the shelf, there is a leaflet inside telling you how to take it, when to take it, possible side effects, all that kind of thing. You don't get that with LDN and some people would like more information.

There is this great website you can go to, the LDN Research Trust. They have some resources there like a recent dosing guide. There is a list that we're suggesting, and I've been an advocate for this for a long time. I love the fact that the LDN Research Trust has this as an open source. There's no membership, no fees, no cost to find information. You can go and you can find patient dosing information. You go to the resources tab, highlight it and then you get a drop-down menu. You can find LDN guides - click on that and then you can find it right there. It's a PDF, you can download and print. It's actually something that we in the compounding world have been suggesting, because it's such a useful tool. It's referenced, it's got scientific references behind it, it's got information and it's got available dosing recommendations that are very different than what we saw even five years ago. 

We start at much lower doses. We titrate to patient response, that's all included in there. Unfortunately it's a 2022 reference dosing guide and I think that your team may have work too, because in 2023 we're going to see some positive changes where it's going to be reinforced by the dosing parameters that we're working with, but new references. That's going to be the tough part, is updating it. But it's brilliant. That's where I would go. And then the other one is to talk to your clinical pharmacist. If they don't have the information, find a compounding pharmacy that is already working with low dose naltrexone. 

I can walk into five pharmacies from the office that I'm sitting in currently, and I can ask them what they know about low dose naltrexone. I don't know; they'll say not a lot, because not every pharmacy has the same focus of practice, or the same education behind them. 

Our role here at PCCA is education, clinical consulting support for those people who are invested in compounding. We've seen some pharmacies here and they're like oh you just take a tablet, mix it up and throw it in some water and they’ve failed to mention that water doesn't have a preservative and if you mix it up you may not be getting a consistent dose. How much to take and you go to a clinical compounding pharmacy with that niche practice and they're worldwide by the way, we've got some members all over the world, so big shout out to all of them doing brilliant work. They're focused on this and they are advocates for the patient. They're advocates for the patient's health and so they'll give you the best up-to-date information. If not, the LDN Research Trust website, talk to a clinical compounding pharmacy that's focused on LDN.

We still have people unfortunately that think they can buy 50 milligram tablets off the internet or buy in fact LDN off the internet or make their own and it's very scary not to be recommended.

I'm going to be as diplomatic as I can. There are a lot of good people out there who are trying to do good work. There are pharmacies that are available online and you can order items from them as long as you have a valid prescription in the country to which you are sending that prescription. The difficulty with internet commerce is there's a lot of people who are great. There's someone out there who wants to buy something and I want to make some money and so they will ship you stuff that doesn't contain naltrexone. It's just got some bad tasting chemical in there that they think will change how you think. Unfortunately we see this not only in the internet commerce, but we see this in a discussion of drug supply. We don't want to see any patient take something that they think like this is going to be great and it's cheaper, and you know it's just as good quality. I can make claims on the internet all day long, and if I do that for a year, and I can sell you dirt out of the parking lot; it'll take a long time for me to be shut down. There's a lot of patients that can come to harm from that practice. 

We always suggest working with a regulated compounding pharmacy, and every pharmacy that would be available to you is regulated by your local government. It is a brick-and-mortar place that you can tangibly speak to a person, and you can ensure that you're getting a quality product, from the reason we talk about compounding, and getting it dosed individually for you. I went to school for a number of years just to learn to be a pharmacist and then I spent a number of years being trained to become a compounding pharmacist. When you're talking about 0.1 of a milligram, we're talking about smaller than a speck of sand that you can see and we're trying to dose that consistently and accurately every single time. It's a big difference than someone making at home without training and thinking like yeah I'll mix it together. We are not making cakes, we're not making omelets. We're making drugs that impact your health. We need accuracy and precision to create a clinical outcome for the health of the patient. Getting tablets off the internet from someone who's selling it to you cheap 's a little bit like buying tires that you bought that you're getting from someone that doesn't make tires. They're just trying to sell you something cheap. It's always a consequence to the patient and you hear about this over and over and over again. You hear the story of people who are unscrupulous and they're preying upon people who are in need. I would rather see a patient get a quality product because that will improve their health so significantly that all of a sudden all those other concerns evaporate. I can't speak to pricing but I can speak to when I see a quality product is used we get quality outcomes. That's the connector. That's why we work with you, because we see the quality education and the conferences and resource sharing. 

The LDN Research Trust is focused on the same outcomes you want. The best for the patient and being advocates. We want the best presentation by advocating for the best product. They go hand in hand. 

It does scare me when companies out there, or individuals that I don't know who they are, but you can actually buy LDN without a prescription, but it's a prescription-only drug ,and that should set off alarm bells that you know it's bypassing all regulations. It can be anything, and I wouldn't want to play with my health or my life. 

I would challenge anyone to really really think about this. If we say that it's a prescription item and it's only available from a registered regulated pharmacy under the guidance of a healthcare provider. Would you go and buy a heart medication off of some guy in the corner? No, you'd be thinking I'm getting this cheap and he's pretty shady and I don't know what he's up to, but you know it should work. He wouldn't take that chance with your heart. Why would you take that chance with your immune system? Why would you take that chance with anything? It's terrifying to me. I will be brutally sharp on this one. We see what's happened in the illicit drug supply with people who are changing drugs with everything from carfentanyl to dalzine to fentanyl and these are people who are a high high risk for what drugs they’re taking. What's to stop these extremely unscrupulous people who are selling things on the internet from starting to use tainted drug supply for those purposes. This is not a good group of people. They're breaking the law. 

There there's so many issues here and the intention is to become healthy. Why would we take a legal practice and start our journey there. It just it doesn't make sense to me. Yeah it's cheap, great, it's illegal. You don't know what you're getting and you're setting yourself up for a high risk, high harm potential. That's not what any of us want to see. So please there's one thing I can suggest is don't do that. 

Thank you so much for having spoken with us today Sebastian. We look forward to your conference presentation in a few weeks.

I am so excited about it. I get to come in early. I'm going to be there for the entire conference. The collection that you have put together is just amazing.

 

 

28 June 2023

Welcome to the LDN Radio show brought to you by the LDN Research Trust.   I'm your host Linda Elsegood. Today we're joined by Kim from the United States who uses LDN for Hashimoto's and Sjögren's syndrome.

Thank you for joining us today, Kim.  Can you tell us what your life was like before you got sick?

Before I got sick I was pretty active.  I was outside a lot.   I loved hiking and I was actually doing CrossFit, heavy weight lifting and various athletic activities.  I loved being outside walking my dogs.  Then that changed when I got sick. 

How old were you when that happened?  

It started about three years ago during the height of the COVID pandemic in 2020 was when I got sick.  

What did you notice?  

Prior to that period I had actually had some bouts with oral cancer. I had cancer on my tongue and it was due to dry mouth and we never found the trigger.  We didn't know what was causing that.  I had five surgeries to remove that and that was in my mid-20s and my first surgery was when I was 32.  We didn't know what triggered that until I was just diagnosed with Sjogren's disease in 2022 and we figured it was probably related to that.  As far as three years ago I got a bout of COVID pretty bad. That was when it was coming into fruition t and then I noticed that I was having even more severe dry eyes, severe dry mouth, lots and lots of joint pain to the point where I felt like I was constantly getting the flu or having the flu battling it.  I was having low grade fevers.  I had chills and debilitating fatigue.  I have a computer job and I was unable to do that computer job even at home, that's how sick and fatigued and everything that I was.  

If you had to rate your quality of life on a score of one to ten and being the best what would it have been?

It was about a two.  I was out of work on medical leave for a while.  I was pretty much just getting out of bed to get my son to school and taking care of my dogs and I had to hire somebody to clean my house because I couldn't even do that.  It seemed like there was just no hope.   I felt like I was getting sicker and sicker and we were running tests and finding remedies and solutions and trying one medication after another that didn't really do anything or had terrible side effects and it was awful.

How easy was it to get the prescription for LDN?  

It was quite easy actually because I started seeing functional medicine doctors here in the U.S and when I told her that I was  taking hydroxychloroquine at the time and it helped but just a little bit.  It took the edge off but it still wasn't giving me my quality of life back.  The doctor asked what are my main complaints?   I said that the joint pain and the debilitating fatigue and she says what if I can give you something that will take care of both of those?  I said yes please.  She said LDN.  

How long ago was that?  You said it was three years when you first got sick but how long did it take you to find this doctor?  

To find this doctor and get that diagnosis and get on LDN was September 2022.  I haven't even been on it for a year quite yet.  

What did you notice initially?  Did you have any side effects?  

I had some minor ones and it turned out to be just due to the filler of the LDN that I was getting. I'm very sensitive to medications and drugs and because I had been so sick my system had kind of thrown me into that hyper histamine state where you have mca's going on.  I had allergic reactions to everything.  I  had my LDN initially filled with .microcrystalline cellulose and that is what I reacted to.  I felt pretty bad for a while until we figured that out.  Then I was able to switch my filler to ginger root.  I didn't have any problems with that.  I think there were some minor headaches at first. I had started taking the LDN at night but then I switched to morning dosing and that seemed to work better for me as well so those were the only minor things. Since then it's been smooth sailing.  

How long did it take before you noticed any improvement?  

I  noticed improvements in my energy and my sleep within three days and then even a couple weeks later is when the joint pain started feeling much better.  Within three months I felt like a brand new person.  I was able to say that I was joint pain-free, my fatigue was pretty much gone.  I was able to go back to work.  I was able to clean my house again and do the fun dog walking stuff I've wanted to do. I slowly started getting back into the life I knew.  

Did you have to change your diet and take supplements or anything?  

I had already changed  to be gluten free and dairy free a couple years back when I was just noticing some gut issues going on.   I didn't change anything else.  I just continued to do gluten-free and dairy free and just taking the LDN has seemed to improve everything.  

What would you say your life is now on a score of one to ten?  

It's closer to about 7.58.  Since it's only September it's not quite been nine months.  I'm still slowly trying to get back into doing more activity, losing some weight that I have gained and things like that and trying to make sure because autoimmune diseases are tricky.  I make sure I don't overdo it and throw myself into a flare.  I have noticed that even when I do go into an autoimmune flare they are much shorter-lived  than they used to be.  I now  see what's happening. Let's take it easy and it seems like the LDN has calmed everything down including me having those reactions,histamine reactions to all kinds of weird things that I never had before.  It seems to have just really calmed my whole system down. 

You said that you're in the US.  Which state are you in?  

I am in Ohio.  

What would you say to other people who are in that awful place that you were in before you heard of LDN?  What advice would you have told yourself if you could go back?  

I had been told about LDN approximately a year before I actually got prescribed it.  I heard it from a friend of a friend you know on Facebook and I was like oh that sounds interesting.  I should probably look into it and I didn't and I could just kick myself because I could have been feeling so much better a year sooner.  I'm part of some of the LDN support groups on Facebook and I see people posting a lot saying they finally got a prescription to LDN but they’re afraid to start taking it. I'm feeling all this stuff and all I would like to say is just don't be afraid.  Just try it. The worst that can happen is you might have a little bit of insomnia or a little bit of headaches for a little while but there's virtually no side effects.  It's a game-changing drug that can help you really get your life back and if you can't find a doctor to give it to you there's other ways.  You can go online to get it. AgelessRX.com is one that we have here in the U.S that will have a doctor prescribe it for you.  Don't hesitate.  When somebody mentions it, as soon as you learn about it, look into it.  Give it a try.  

You have Hashimoto's so  I think you had high antibodies. What are those antibodies like now?

When I first was diagnosed with Hashimoto's in 2021 they were um 725 and then throughout the next year, before I was actually diagnosed with Sjogren's and was getting sicker and sicker, they went up to 13,000. As soon as I saw that number I thought they messed up the test.  It had to be wrong.  Unfortunately it wasn't. Since I've started LDN I have dropped those antibodies down  to about 1260. They're still very high but coming down from thirteen thousand in seven months that's huge. Yes it was good. 

How is your fatigue? How many hours were you sleeping before?

I was still sleeping I was sleeping about eight hours roughly average every night.  Given my schedule I really couldn't sleep much more.  I took a nap every day. There was absolutely no day that I could get through without taking a nap.  I  could nap two hours, three hours and then I would still be tired when I woke up.  The fatigue was the kind where it doesn't really matter how much sleep you get, it's just pure utter exhaustion. I remember that feeling.  Yes. Going to bed thinking oh I'm just so tired.  I need a good sleep. Then I would wake up and I'm just as tired. Did I even sleep at all? 

How is your pain?  I mean was it mainly joint pain that you had?  

Correct. Joint pain and muscle aches.  I initially went to the rheumatologist because I thought I had rheumatoid arthritis.  I felt it was particularly in my hands and my shoulders and my hips and after he did some testing and some more assessing we found out it was Sjogren's which has the same joint pain that rheumatoid arthritis does.  It was also muscle muscle aches, that sick feeling like you always have the flu kind of feeling or fighting it off.  

Now you have dry eye and dry mouth.  How has that been? How long did that take?

When I first noticed the symptoms I was in my mid-20s. I had told a dentist that I thought I had a salivary gland issue because that side of my mouth was always dry. It's been going on for 20 years for me. When I had my first surgery for my tongue that was when I was 32.  It's been about 15 years since I started with the really dry mouth battle. During the year that I was very sick 2021-2022, before LDN, I was having to constantly either suck on mouth lozenges or use mouth sprays or a gel that you can put in your mouth like called Biotene.  Biotene helps soothe dry mouth. I also used lots of eye drops as well.  I can't remember the last time I've used them.  It seems to have drastically improved everything. 

Would you say your eyes are back to normal, whatever normal is?  

I would say maybe just a dash under normal. Not perfect but definitely much  improved.

If your eye did become a problem you can get LDN eye drops.  If you do ever try them please let me know.  I'd like to see how they benefit you.  Also, LDN has a nasal spray which should help with the eye and the mouth.  Those are good resources to keep in the back of your mind if ever needed.  

It was really nice talking to you and thank you very much for sharing your experience with us today. 

[Music] Any questions or comments you may have please email me Linda l-i-n-d-a at ldnrt.org.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company until next time stay safe and keep well. [Music] foreign [Music]

 

Leonard Weinstock, MD - Irritable Bowel Syndrome: The Roles of Small Intestinal Bacterial Overgrowth (SIBO) and Mucosal/Systemic Inflammation (2017 Conference) (LDN; low dose naltrexone)

 

 

George Yiachos, MD, FACC, FASNX: How to Treat Chronic Inflammation to Help Prevent Heart Disease (LDN; low dose naltrexone)

 

 

Linda Elsegood and Seun Moses: symptoms.wiki curator talk about low dose naltrexone (LDN; low dose naltrexone)

 

 

Paul Anderson, NMD discusses his presentation on Immune Modulation in the Age of Long-COVID and Related Illnesses.

 

Deena - Canada: Update on her UCTD (Undifferentiated Connective Tissue Disease), Chronic HSV2/Shingles, Chronic Pain, IBS, Histamine Intolerance, Vestibular Migraine, and Insomnia (LDN; low dose naltrexone)

 

 

Marilyn - US: RA Pain (LDN; low dose naltrexone)