LDN Video Interviews and Presentations

 

Nellmarie Bodenstein, GP - Clinical use of LDN in South Africa - 2022 Conference (LDN, low dose naltrexone)

 

 

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. 
 

 

 

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

 

 

Yusuf (YP) Saleeby, MD - Update on COVID, Long COVID and LDN (LDN; low dose naltrexone)

 

 

Anita - US: Multiple Sclerosis (LDN; low dose naltrexone)

 

 

Kristen Burris LAc, MSTOM - Acupuncture and Chinese Herbal Medicine(LDN; low dose naltrexone)

 

 

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

Sandi: I thank you for having me. I love LDN. I want everybody to know about it. 

Linda Elsegood: So when did you first notice your MS symptoms? How long ago was that? 

Sandi: I was diagnosed in January of 84. And totally paralyzed by that fall and with a lot of help from God I got back to being fairly normal and I walked without aids until 2016 when I had to have back surgery. And so I yeah I'm doing the impossible which people think I shouldn't be doing. So I'm pretty thrilled that I've not being completely wiped out with the stupid disease because it's a horrid horrid disease that I want no one to have. 

Linda Elsegood: Exactly. So can you tell us what was your life like before you started LDN? 

Sandi: Immediately before. Okay with the MS I also have a disease called interstitial cystitis which is also called painful bladder disease and so my life before LDN I would literally have to go to the bathroom every 20 minutes to two hours when the interstitials kicked in, and with the MS I was had overactive bladder terribly bad. And so I couldn't go more than an hour or two without having to go to the bathroom and that was day and night. And so with LDN once I started that my bladder has been nearly normal, which is absolutely amazing. Before LDN I couldn't drink my coffee because it's a diuretic and so it would go right through me. But now with LDN I'm so totally normal like you go five six hours during the day without having to use the restroom or I sleep eight hours through the night. Eight to ten hours through the night without having to get up. It's amazing absolutely amazing the difference that it made. 

Sandi: And then something I didn't realize and I had been keeping track of it because it was something odd. I started going to the bathroom in the other direction too, having bowel movements, and before LDN I was perpetually constipated. I sometimes didn't go to the bathroom for five six days at a time. But in 16 after I started taking LDN I started going to the bathroom. What's this? Why? You know it's different and after I looked into it and started studying it a little bit I went well, of course the LDN has got me regulated that way, too. Which is an absolute miracle because being constipated for back then, what was it 25 years, that's a long time, and so it totally reshapes my whole life. I love it, I love it, I love it. 

Linda Elsegood: So apart from the bowel and the bladder problems prior to LDN what were your other symptoms? 

Sandi: With the MS or yes well, I have abnormal feeling below my waist. I can feel that it's abnormal. Fortunately, MS has not affected my brain. I'm still very cognitive and the neurologists agree with that. I have balance problems and I can't walk far, but I can walk. So I have abnormal feeling just throughout my body. My hands when I was first diagnosed were impacted but they are no longer a problem and my arms were never impacted. So those are good things. My eyesight was never changed with the MS but the drug that I took for interstitial cystitis has given me macular degeneration, and so I have lost the central vision in one of my eyes, but that that was the drug that caused that. And the fatigue, that's the big one, as most of us with MS have extreme extreme fatigue, and that is something that I have not found anything that helps with that. Get down. 

Linda Elsegood: Didn't the LDN help with the fatigue? 

Sandi: Not that I noticed, no. I wish I wish that it did but no. I found nothing that really helps with the fatigue. 

Linda Elsegood: Have you looked into diet?

Sandi: I tried a diet when I was first diagnosed and on that diet I lost so much weight I weighed under 100 pounds and I'm five foot almost five six, and so diets don't work for me. I wish they did, and they're extremely complicated, so I have troubles eating, as it is so to go on a diet. I can't do. It doesn't work for me. 

Linda Elsegood: Okay so just prior to starting LDN if you had to rate your quality of life on a score of one to ten and ten being the best what would it have been? 

Sandi: Before? Yes. Probably a three. Okay and now, well I I get more I get more complicated as I go along. This past March I broke my butt, I just fell onto the floor and I got to sacrum fractures and spent 28 days in the hospital and so without that my quality of life would be an eight. I was working part-time. I was doing really well, until I got COVID in 21. Spent 21 days in the hospital and lost my dad to it in 21. But I was coming back from that and then I fell and broke my butt and so prior to all that, I would say that my quality of life was about an eight. Right now I'm more six seven-ish just because of the healing that's still taking place in my butt. 

Linda Elsegood: Has LDN helped with the pain at all do you think?

Sandi: I think that it has because there were a couple times within that hospital state that I did not have my LDN and I think once I started back on my dosage the pain lessened. It didn't go away because obviously it's two fractures, but it I think that it did help, and I think that it does help I'm not nearly in the amount of pain that I used to be in before LDN because I've always had hip pain, and there's a spot in my butt, they never really knew what was going on, and that's why I had back surgery. But that has always kind of been there, but after the LDN it definitely diminished. So I think it does help. 

Linda Elsegood: And did you recover from the back surgery okay? 

Sandi: I did. The back what was happening was there was a nerve that was hitting something. was hitting on a nerve. and I would just be standing at work and it would drop me. and nobody quite knew what it was and then they found out that my S1 disc was problematic and so they went in and fixed it and it stopped that.

Linda Elsegood: And what caused your fall your last fall where you fractured two of your bones? 

Sandi: These fractures that I just had in March, I had just come off of my fourth colonoscopy in a year, and my legs just gave out and I just basically squatted to the ground, but fractured both sides of my sacrum. Yeah don't do it. I like to tell people bust your butt doing the things you love, just don't bust your butt the way I did. It's not worth it at all. 

Linda Elsegood: Yeah sounds terrible. 

Sandi: It is. Yeah I I recommend nobody else do it. 

Linda Elsegood: Yeah. It's not good. So how did you know initially that you had MS?

Sandi: Well, I was back in college and all of a sudden my butt went numb. It was like I had sat too long and I went to the doctor at that point and said my butt's numb. He said oit might be MS. Well that cleared up, and then I had taken a terrible fall when I was hot potting in Yellowstone Park, and I kind of fell down the mountain. I gotta admit I was partying. Yeah. So we thought that was it. But then I was working for a theater company and we were loading up the bus from the second story loading dock and I fell out of that loading dock and ended up with terrible terrible headaches that sent me to the neural neurologist for the first time. And so they diagnosed MS at that time. 

Linda Elsegood: So you've got an expert faller one way or another. 

Sandi: Yeah exactly. No it was kind of just an odd way to go around getting diagnosed 
Linda Elsegood: But were you on any treatments at that time? Anyway treatments? Treatment? Did they offer you any help? 

Sandi: Oh yeah, no in 1984 they really didn't. I took some steroids, not for very long, but they didn't have any treatments ,and so after the recovery from the total paralysis where I learned to crawl, then walk with crutches, then walk with the cane and then walk independently, I was pretty normal, other than my bladder and my bowel. I mean I walked very stiffly; it was an abnormal walk, but a lot of people didn't know and so I walked like that until my back really gave out. 

Linda Elsegood: You very lucky with not having cognitive problems. 

Sandi: Very lucky. Yeah, yeah that that that to me would be the worst, yeah, I like being able to think and respond and obviously talk. I'm very very grateful because it could be a whole lot worse. I have to have to all the credit to God because he's the one that's done it. I'm very blessed. Very very blessed, because at the beginning the doctors had said you will never walk again and they guaranteed that I wouldn't walk without aids and I did. I walked without aids for 25 years. That's a long long time isn't it?

Linda Elsegood: It is. Yes. It is. Are you able to do any exercise or are you having to be very very careful right now? 

Sandi: Right now, and I've got people in praying about this, is there's kind of a fear of walking, just because I don't want to fall again, and so I have planned that I will start going again to the YMCA and rebuild my muscle. It's not like me to be scared of walking, but I have been. But I am just now getting back to overcoming that. 

Linda Elsegood: Well that's good. 

Sandi: I'm going to get back to me, get back to, yeah. (laughter) I do live alone so, I'm totally on my own. As I said, my dad had passed from COVID last year and he lived next door to me, so. So, this whole year has been a total relearning curve. But as I said God and LDN are my two staples that I will never quit never. 

Linda Elsegood: You've done remarkably well, absolutely remarkable well. What an inspiration. 

Sandi: But I hope I hope I am because it's a mindset; you can't you can't give in to the negativity. And I love my doctor that had prescribed LDN. I think that I found out about LDN on my MS websites back in 15 or so, but I am her first patient that she's put on it, and she puts anybody with the autoimmune disease on it now. And because of me. Because it has worked so well for me, she now readily prescribes it. 

Linda Elsegood: Which makes me happy, because you've been on it's a long time. So she's been able to see that it hasn't done you any harm, and you'll continue to improve, so that's amazing. 

Sandi: Oh yeah, no side effects whatsoever. And I love my dreams. I keep saying that if I could totally remember them all the time I could write sitcoms. They are so funny yeah. I I absolutely love the weird dreams. 

Linda Elsegood: I feel robbed now I never had any dreams. 

Sandi: You haven't? That's the one side effect that I do have from it. Like I said, I think they're crazy. I love them. 

Linda Elsegood: So the doctor that prescribed the LDN for you, was that your own doctor or did you have to go looking for an LDN doctor? 

Sandi: No she was my own primary care physician. 

Linda Elsegood: That's good. 

Sandi: Yeah and like I said, she is sold on it now She's absolutely sold on it that she will prescribe it for other people that come to her. So that's a good thing when I tell people about LDN, here in my community, at least so I can tell them you know, Dr. McIntyre will prescribe it for you if you want to try it, she will do it. 

Linda Elsegood: Did it take her a long while to decide to just prescribe it for you? 

Sandi: It didn't. My doctor knows that I do a lot of research in all areas of MS and autoimmune diseases mainly. And so she knew that I knew what I was talking about. She has been very supportive of me because I have gone around the world with stem cells for adult stem cell therapy. And so she knows that I do my research. She knows I'm not just slinging it at her going let's try this. She knows. So she was very good about prescribing it readily, easily because she knew I really looked into it. It wasn't just a spur of the moment thing. 

Linda Elsegood: And how did you get on with the stem cells? 

Sandi: I have some friends who I call my stem cell gurus who matched me up with different places, and the progress and the promising results of them. And so that's the other thing I like. I like adult stem cells. My last ones I had were in 19, and I went to Chicago and Mexico and those stem cells have totally eliminated my problem with heat intolerance. I used to have to have the air conditioning blowing full blast in the summer. This summer I've turned my air conditioning on maybe four times the whole summer and we've had a record hot summer in Montana. So yeah that's another thing I'm sold on, stem cells, and yeah I like those. My ones from Israel I found I walked totally normal, but only for nine weeks until they've they wore off. So you have to keep getting them to keep them working, but it proved to me that they work. There's going to be time that I go get more and I think they work well with the LDN. I think they're in a similar league for me that they're promising in all sorts of areas. 

Linda Elsegood: Well, we wish you all the success with your healing. We hope that you’re back up on your feet soon. 

Sandi: Thank you. The one thing I will say, and I follow LDN groups, I'm on several of them obviously, but the one thing that it has not helped me with at all are dry eyes, and I see people saying that they get help from that. But for me that is something that it has never helped. Which I wish it would but it has not. Okay. Everybody's different, so. 

Linda Elsegood: Exactly. 

Sandi: May I ask what you take it for? 

Linda Elsegood: MS. 

Sandi: You do. Okay. You too. What's your story? 

Linda Elsegood: Oh you'll have to listen to it. You'll have to Google me and listen to it. 

Sandi: Okay 

Linda Elsegood: 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 

 

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