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. 

 

 

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]

 

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

 

 

Anita - US: Multiple Sclerosis (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 

 

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

 

 

Summary:

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

Full edited text:

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

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

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

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

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

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

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

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

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

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

Linda Elsegood: And how long ago was that?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Barbara - US: Fibromyalgia, Sjogren's Syndrome Arthritis, Hypothyroidism (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

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

Zoe - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Zoe from England who has multiple sclerosis. Welcome, Zoe.

Zoe: Hello.

Linda Elsegood: Could you tell me when you first started to notice symptoms, and how old were you then?

Zoe: In 1993 I started getting numbness in my toes, but I wasn't diagnosed until 2001. I was 51 at that time, I was a very active person. When I first started getting symptoms, I used to compete successfully in orienteering triathlons. My children were still at secondary school and I was working part-time. 

Linda Elsegood: At the time you were diagnosed, what were your symptoms 

Zoe: I had optic neuritis and, or a long time I'd had problems with foot drop, then I was getting problems in my leg. I hadn't connected the two, but of course, when I saw a new neurologist, he realized and so I got the diagnosis. 

Linda Elsegood: And how's the impact on your life being diagnosed with MS?

Zoe: Well, obviously I had to stop running my sporting activities. It just went downhill. I couldn't read a map, and I couldn't run, so orienteering wasn't possible, and it was really devastating to be told you have an incurable disease, which is only going to get progressively worse. You tend to go into deep despair, but I did have a very supportive family, and they just gave me enough space to come to terms with it. Which I suppose I did in my own way. I could still run a bit then, but it just became gradually worse over the years. I didn't have any very serious symptoms. The optic neuritis was just gradually getting worse. 

Linda Elsegood: And how did you hear about LDN? 

Zoe: Well, I read that in youth pathways, and I also joined the MS group and some people in that group were taking it. I think that was around about 2004 when I first heard about it. 

Linda Elsegood: When did you first start taking it again? 

Zoe: I didn't start taking it until 2010. I had tried before then; I had no luck getting LDN when I first wanted it, which was 2005. I got a load of information from new pathways. I sent it to my neurologist and to my GP. And when I discussed it with him, he just dismissed it. He said, Oh, that's just a placebo. You might just as well take all paper paste. So I said to him, well, what do you recommend? What can you do for me? He said, there's nothing I can do for you. He didn't have any alternative. I've never seen him since, so I asked my GP if she would prescribe it, but she said, Oh no, I can't go against what the neurologist said. So that was it really. I believe I could have gotten a prescription from the States or something, but I don't know. I just didn't go down that road. I tried lots of other remedies, with diets and various things. I tried antibiotics. They all helped to some extent, and I think that was the placebo effect.

Eventually my MS nurse said, what don't you see this neurologist, another man. And he said there was no harm in trying the LDN though he didn't encourage it. And by luck, my GP was having a baby and her replacement said you can try this, good idea. So I eventually started it in December last year. 

Linda Elsegood:  Did you notice any initial side effects? 

Zoe: Yes, I did. I got a headache which lasted about a week. I felt very dizzy at first. The first day I felt dizzy and I didn't dare drive a car. The headache lasted about a week and then went off, but I also felt very sleepy. When I increased the dose, I could get the unpleasant dreams, which is sort of usual side effects, I believe. 

Linda Elsegood: And how long did it take before you found that LDN was a benefit?

Zoe: It started being beneficial more or less about the first three weeks, I suppose. 

Linda Elsegood:  What benefits have you noticed being on LDN? 

Zoe: My energy increased. I was up to do more. I don't get so tired, and what I really noticed after a couple of months, was that my concentration had really improved. I could think about things without getting muddled like I used to. I did a tax calculation, which I'd been putting off for months, and I found I could go out in the evenings and do things like that. I kept doing things I hadn't done before, not all at once. I mean, you know, and another day I washed the car, and I kept thinking, I haven't done that for a long time.

Linda Elsegood:  If you were to score your quality of life on a rating of one to 10, 10 being the highest before you started LDN, what would it have been? 

Zoe: Oh, four. I should think. 

Linda Elsegood: What would you say to other people who are contemplating trying LDN

Zoe: I think they should go for it. Start as soon as you can, if you can get. If you can get it you might need to persevere to get through the initial discomfort. I would say the starting dose seems to be quite critical. I got it in a liquid form, and it was easy to adjust. So although I started at three milligrams, I reduced it quite soon to two milligrams and I found that I could cope with that better. So that's probably why some of those headaches and tiredness went. It's quite an easy thing to do, and you just need to persevere. 

Linda Elsegood: Well, thank you very much for sharing the story with us. 

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