LDN Video Interviews and Presentations

Melanie, a resident of Canada, went through a challenging journey of coping with multiple health conditions such as MCAS, POTS, Sjogren’s, Fibromyalgia, Asthma, and Hashimoto's. It's undoubtedly difficult to manage so many health issues simultaneously. However, Melanie found that once she was diagnosed with MCAS and learned how to control it, she observed an improvement in every other condition she had. It's admirable how she persevered through her struggles and learned to manage her health issues effectively. 

Living with the chronic conditions of Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), hypermobile Ehlers-Danlos Syndrome (hEDS), Polycystic Ovary Syndrome (PCOS), and Sjogren's Syndrome can be extremely challenging. Lindsay, who lives with these conditions, must face numerous daily struggles and triumphs. Despite her difficulties, Lindsay's determination and resilience continue to inspire others. It is noteworthy that she is not only a patient but also a Registered Nurse (RN) and Licensed Professional Counselor (LPC). Her experience as a healthcare professional and a patient make her an excellent example of strength and courage. 

 

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]

 

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.

 

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

LDN Questions Answered Live by

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

Sponsored by Innovative Compounding Pharmacy icpfolsom.com

 

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

Pharmacist Tarek El-Ansary, LDN Radio Show 10 July 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: My guest is Tarek El-Ansary. He's the owner of Carmel Valley Pharmacy. He's also a doctor of pharmacy. Thank you for joining us today. Tarik 

Dr Tarek El-Ansary: yes, my pleasure. Thank you for having me. 

Linda Elsegood: Could you give us your background, please? 

Dr Tarek: Yes, certainly. I've been a pharmacist for almost 21 years. I graduated in 1998 from the University of Pacific School of Pharmacy with a doctorate in pharmacy. I worked in different chain pharmacies for the first eight years. And then I went on to purchase my first pharmacy, an independent pharmacy, and it was retail on need. We barely did any compounding.  I went on to buy a few more pharmacies. And we had a lot of success with that. And then about five years ago in 2013, I started Carmel Valley pharmacy and I wanted to do something different, and, start with compounding and learn all about integrative and functional medicine that goes along with compounding. And that has really opened me up to many, many more opportunities and tools in the treatment options that are available, and it's just been, it's just been an amazing ride and process.  

Linda Elsegood: wow. How would you describe your pharmacy now? 

Dr Tarek: So my pharmacy now is really just focused on customer service and patient care. We do, we're a hybrid pharmacy, which means we do both compounding, and then we also do the retail commercially available pharmaceutical products that are made by the pharmaceutical company. So we do both. And it's a walk-in. People can come in, and we do also offer delivery and mailing, and a lot of consultations. We spend a lot of time, between myself, the pharmacist and the patient, and also interacting with the doctor, getting them involved. And we really do practice the triad of medicine, which is the relationship between the doctor, the pharmacist, and the patient.  

Linda Elsegood: We are moving towards a pharmacist in the UK playing a role. Normally if you wanted any medical advice, you got it from your doctor. You didn't get it from your pharmacist, but it's still not working. How it is working in the States because you there, you just go to the pharmacy and speak to the pharmacist, but the pharmacist doesn't relay that back to the doctor.  So we don't have it working.  It's a bit dysfunctional. Really. It's not as good as what you do so 

Dr Tarek: well, It doesn't work that often unless it's a type of pharmacy like I have when other pharmacies I've been at, which just retail me, it's still, we're still really behind on that also. 

Linda Elsegood: Okay.  

Dr Tarek: Yeah. It's just the type of practice I have now is different, and so now that triad works really well. 

Linda Elsegood: And it's so good that you look into supplements and lifestyle and things that maybe the doctor wouldn't have the chance or time to go through. 

Dr Tarek: Absolutely. You know, with the seminars I attend, I've learned so much about supplements, and unfortunately, the pharmacy schools and the medical schools are just not getting into that and teaching anything about supplements even to this day.

And so with the seminars, I'm learning a lot and doing them on myself, starting them on myself and my family members, and seeing a significant difference in our own health. And so it's giving me the firsthand knowledge to recommend for my patient. And the feedback has been really good and positive, which further reinforces, you know, an ???  to be able to carry on a message to patients who need supplements and specific areas of problems that they have.

Linda Elsegood: When did you first hear about LDN? 

Dr Tarek: Uh, I think it was a seminar I attended. I go to PCCA And a A4M seminars, at least a couple of times a year just to learn the new things and keep up on my knowledge. And, probably about three or four years ago, the first time I heard it brought up at a seminar and in it was, it just sounded, it's really exciting and amazing.

At the same time, a few prescribers in my area started prescribing it and then I was able to spread the word to other prescribers that were open to doing compounds and new things that they hadn't heard about. And so we've seen it really spread since then.  

Linda Elsegood: and you're in California. So I was just thinking about the supplementation.

Do people in California need to take Vitamin D, or do they get enough sunshine? 

Dr Tarek: I would say they still need to take vitamin D. I would say just about everybody. The average level of an American, even including California is 15 and anything below 50 is considered deficient in vitamin D. Actually if you're not above 80, you're not considered optimal. And so you don't get a lot of the preventative effects of vitamin D like preventing cancer and stimulating and really helping to have a healthy immune system. And so by just being at 50, all you're doing is helping to keep your bones healthy, but you're not really helping with the immune system.

From what I've learned, it's for every thousand units you supplement per day, you bring that level up by ten, so if you're at 15 and you take 5,000 units a day, you're going to be at about 65 so you're going to be above the 50 Mark, but you're still not going to be optimal. So that kind of gives an idea of where it is, and we do see people getting tested when they are taking and it kind of, it really does follow along those lines. 

Linda Elsegood: So how long have you been compounding LDN?

Dr Tarek: We've been doing it for probably about four years now. We opened about five years ago, a little over five years ago, and we've been doing compound LDN for the last four years.

Linda Elsegood: What forms do you compound in?

Dr Tarek: Oral,  topical and transdermal. 

Linda Elsegood: Okay. So. When you say oral, is it capsules, tablets? 

Dr Tarek: Yeah, 99% of the time we have done it as a capsule. There are a few that we've done in liquid for small children that can't swallow capsules. And then also if we want systemic absorption, we can do it in transdermal effect, where we put in a light that's on base. So it gets absorbed really well into the systemic circulation. And then topically, we've used it for scars and, and, or itching type skin reactions. We've seen great effects because usually scars and itching and like psoriasis or, or rash, that's part of the immune response. And since we know LDN has a significant effect on our immune system. We’ve been seeing it having a great effect.  

Linda Elsegood: let's 

Dr Tarek: use topically. And then with transdermal always seen it used when we want to insist into the systemic circulation, especially with small children who are on the autistic spectrum. They're getting it absorbed really well and seen great effect. 

Linda Elsegood: So do you have any case studies?

Dr Tarek: Yeah. Yes, I do. I had seen them when they were presented at some seminars. I do not have them handy. I have seen case studies done specifically just as an example, I think it was the glutathione 20% mixed with LDN, 0.5% in a transdermal cream if used with autistic children on the spectrum, and a significant effect that was. That had just by applying that each night by the parents and just rubbing it between the shoulder blades and giving the child a message at nigh with the cream and the parents, the feedback has been really good. And we have about five or six small children who get on a regular basis at our pharmacy and the feedback and the parents had, they tell me that it's made a huge difference in their children's behaviour and their life.

Linda Elsegood: So how old are the children when they starting at the end? What age are they diagnosed normally with, with autism? 

Dr Tarek: It definitely ranges and we've seen as small as four or five years old. I would say probably the most common age is around 10. I think there is a level of confusion and denial on the parents' part of not understanding what is going on with the child's behaviour when they start to present with autistic behaviour around the age of four and five that I think there are a few years where they're just not understanding what's going on and to actually take them to a physician who can make a correct diagnosis.

Linda Elsegood: Yes. I knew a little boy who was autistic. A terrible shock for the parents, I must say. 

Dr Tarek: We have a nephew in our family that is dealing with it and there were a few years of just not understanding what was going on before the diagnosis was made. 

Linda Elsegood: Yeah. I just have to tell you, we, in the first documentary, we did the LDN story, we interviewed a little boy called Jacob, and he's a piano protege. He can just play Beethoven just without looking at music, and he's so talented, but he was all. I would say it was, but of course, he still is, but he doesn't show signs of it anymore. But when he was small, he wasn't responsive to his parents. He didn't want to be hugged. He didn't want to be cuddled. And as he grew older, he just used to fight them the whole time, and regularly he used to smack his mum across the face.

And one day after he'd been on LDN, she was always saying to him, you know, I love you, Jacob. I love you, Jacob. And he just didn't respond, apart from slapping her. But this particular day she said, I love you, Jacob. And he looked at her, and I think he was three or four, and he said, “I love you, mommy.”

And she called her husband, and she said, quick, quick, get the video camera. I want to ask him again, you know, say it again and see if he'll do it, and we will record it because he may never in his life. Say it again. You know, I want to catch it. And he just went from strength to strength—a totally different child. Absolutely. Amazing story.

Dr Tarek: I think there's many like that with LDN.

Linda Elsegood: Yes. Exactly. It gives you hope, but like you were saying, it's the confusion to start with, isn't it? To get that correct diagnosis. So, yeah. Is important. So with your capsules, what filler do you use? 

Dr Tarek: There are two different fillers that we use. Typically we started with avicell, which is just very clean a filler that has no side effects, no inflammatory or reactive effects on, especially specifically to patients who have sensitivities. So we never compound with anything that would contain lactose or gluten or corn starch as a filler. But now there's been a few naturopathic doctors who. They loved the idea of compounding using the filler ginger root, because of its properties, especially with the gut health and just a soothing effect it has on the gut.

So that has been one of our common fillers now with the LDN, and other meds that we compound is using ginger root as a filler. 

Linda Elsegood: Wow. Do you know, I've not heard of that before. How interesting. Sorry, ginger. Tell, make a note of that. Wow. I love ginger. 

Dr Tarek: Yeah. Yeah. It's a great idea to mix it with their LDN.

Linda Elsegood: but of course, being a capsule, you swallow it so you wouldn't notice anyway.

You would use that. It was ginger. 

Dr Tarek: Yeah. You don't get the bad taste. Yeah. 

Linda Elsegood: Oh, bad taste. I love the taste of ginger. 

Dr Tarek: Well, it can, it can have some good tastes, but I think the ginger root powder that we, you know, that we're using its a clean powder, but it does have a little bit of a bitter taste.

Linda Elsegood: does it?

Okay. So what would you say your main patient population is that use LDN? Would you know that? 

Dr Tarek: Yeah. Uh, I would say it's adults over the age of 18 mostly getting it in capsule form. The most common dosing that we see is 2.3 or 4.5 milligram where the, you know, the vast majority is definitely below 4.5 milligram due to the fact that most studies show that the modulating effects of the receptor happen below 4.5 milligrams and we just, I don't think there are enough studies out there to know what happens when we go above 4.5, and I think the consensus is there's not really a need to go above 4.5 for most uses and that we see the effect, the response we want below 4.5 without the side effects. And so that's what we mostly see and the uses, it just ranges significantly between just gut issues, any autoimmune issue, neurological issues and pain. And on and on, it just seems like they keep coming up with a medical diagnosis that they try it on and they see good effects and the side effect profile, even though it's listed as sleep disturbance or vivid dreams. In speaking to my patients, and we have a few hundred different patients getting it each month. The feedback has maybe been one or two has actually told me that they thought they had a, it affected their sleep, but then again, you know, there's a lot of things that could affect our sleep.

So it could have been a coincidence. 

Linda Elsegood: Yes. It seems to be a drug that is well tolerated. I'm must say from my fifteen years of experience of talking to doctors and pharmacists and patients. The people who mainly tend to notice side effects are people that are ultra-sensitive to drugs, and it's usually people who've got fibromyalgia or chronic fatigue syndrome. Those people seem to be so ultra-sensitive that they have to start very, very low and increase very, very slow. People get there if they're patient. But yeah, if you find it is too much for you, it's definitely an idea to have a very low dose and increase slowly. 

Dr Tarek: Yeah, and that's a great point. And the patients who do require the slow titration up, we do the 0.5-milligram capsules, and it's anywhere from every three to seven days. They start to increase from one capsule a night to the second capsule to go to one milligram, and they slowly increase as they can tolerate it, so they get their desired effect, and then we stay at that dose.

Linda Elsegood: I mean, there are some doctors who prescribe up to six milligrams, some even go higher, but there are quite a few that try six. And with the chronic fatigue, there are some doctors who actually use double dosing, night and morning. And it's reported that those patients get more of the boost of energy, which is very helpful in those cases. What about thyroid patients? Do you have many of those on LDN? 

Dr Tarek: We do, specifically when they have autoimmune, when the underlying cause of their thyroid issues is autoimmune, which I think that the large majority of them, and you know, specifically Hashimoto's. When the doctor OD is open and familiar with the uses of LDN, and they do use that on those patients, we're able to see a reduction in dose and their thyroid medication and supplementation, and we're seeing thyroid antibodies reduce just by initiating LDN. 

Linda Elsegood: That's amazing, isn't it? How that happens.

Dr Tarek: about, do you use more often in the ones that said it is helping, 

Linda Elsegood: but I mean, the people are using it for Hashimoto's, hypothyroidism, hyperthyroidism, Graves' disease, Sjogren's syndrome. I mean, they're all thyroid, aren't they? And there was a paper written on Sjogren's syndrome last week, which was interesting.

Yeah. So, yeah. And then you get people who think, how can LDN work for so many different conditions, but it's to do with the autoimmune component. We didn't realize 15 years ago how well LDN worked for pain. It doesn't have to be a condition that is all autoimmune, which causes the pain for the LDN to work. Yeah. And neuropathic pain, especially in diabetics, it works really well for phantom limb pain as well is, another quite new thing that I've learned about, but there is always something happening with LDN. I don't know whether it's common knowledge yet in California, but. pain specialists are using ultra-low-dose naltrexone alongside opioids and weaning patients off the opioids.

That's very exciting. We're actually going to be filming a documentary on LDN and pain because there are so many patients who are addicted to pain medications through no fault of their own. You know, they haven't been buying drugs on a street corner. These are prescription drugs, and it's still the same, isn't it? To try and get off those medications. You still go through the awful withdrawal symptoms, but by using ultra-low-dose naltrexone where you. I'm starting on a microdose and increase that slowly, decrease the opioid and the people that I've spoken to who it worked really well for. It's amazing. Totally amazing.

And quite quickly, because I thought you'd have to do it over a long period of time, but it doesn't seem to be as long as I would think. 

Dr Tarek: Yeah. And those ultra micro low doses, are generally very low. So it's really important for anybody who wants to try it. They really need to be careful and, and understand instead of the dosing we've been talking about thus far, which is 0.5, up to 4.5 milligrams, uh, with, with people who are on opioids, we currently, we want to go start at 0.001 milligrams, so a very ultra-low dose. And because we don't want to throw them into withdrawal and cause them more harm, we want to try to help them.

Linda Elsegood: Exactly. And it's something that you would never, ever try and do on your own. It has to be under medical supervision because you could become stuck.  Definitely. 

Dr Tarek: Yeah. 

Linda Elsegood:  What pain conditions have you your patients been using LDN for?

Dr Tarek:  I've seen it used for some fibromyalgia patients. And some neuropathic pain patients we've asked. We've also included it in our transdermal pain creams, so we are starting to add that into there and seen a lot of, a lot of great results with it. I wish we could use it with, uh—complex regional pain syndrome. The problem is those patients are generally all already on high doses of opioids, so we can't use it on them. But we have seen that it's really effective for those patients. But the patients that we have at our pharmacy, they're already on really high doses of opioids, so they just can't be on it. 

Linda Elsegood: Well, maybe they could try the ultra-low dose. 

Dr Tarek: Yeah, they could. You know, we were just starting to learn about it.

And that’s the exciting thing about LDN is we're constantly in a learning phase with this. And so we're learning more and more uses and more and more types of doses and, and, that's something that we, we want to try to communicate to those physicians that are treating those patients. And. hopefully, we can get an open ear that's open to learning more about it.

Linda Elsegood: Yes. I mean, Dr. Deepak Chopra wrote a paper long while ago now, probably 2015 on complex regional pain syndrome and LDN, not a very interesting paper, but there are more and more pain specialists looking into LDN for pain. And I have spoken to many patients who are not on just morphine or fentanyl patches, but a cocktail of medication and they say that their pain is still on a score of one to 10, 10 being worst, nine on a daily basis.

And it's awful to think that people have to suffer like that, isn't it? 

Dr Tarek: Yeah, I agree.  Yeah, I have a young lady who comes to our pharmacy regularly who has the condition and, when it's acting up, and she comes in, you can, she's just kind of , bent over and walking very slowly, and you can tell that her pain is definitely at a ten on a scale of one to 10 and even though she is currently on high doses of opioids, it's just no stopping it. The pain is at a ten and, and she can't seem to find any relief at that point. Very, very hard to see someone suffer like that.

Linda Elsegood: Unless you've witnessed it and experienced what pain can be like. You think that you know you've got a headache, you take two paracetamol, you feel okay, but there is pain out there that does seem untreatable, doesn't it? Yeah, I can remember. Yes. Dr Samyadev Datta, he's also a pain specialist, and he was telling me how he has a practice, but he also works in the hospital, and he will get a phone call in the middle of the night that there's a patient, you know, screaming out in pain, the pain levels that are a ten and he will go in, and he'll say, okay. This patient is on 14 painkillers on this cocktail. They’re on too many pain medications. It's not going to work. You've got to take them off this, this, this and this, and sorting it all out. But he's very for LDN and ultra-low-dose and there is so much more coming in this in the next year, I am sure because. The PCCA, talking about LDN, more other conferences or talking about LDN? We have an LDN conference not that far from you really, is it? California? Portland in Oregon. 

Dr Tarek: Yeah. Great.

Linda Elsegood: Hopefully, we will be able to get you there. Because meeting all these people and actually being able to put your questions to them. It's an amazing tool. Amazing tool. Well, if you would like to tell our listeners how they can contact you and what your website addresses, that would be good. 

Dr Tarek: Yes. So the name of my pharmacy is Carmel Valley Pharmacy. The website is CarmelValleyPharmacy.com. And the phone number is (858) 481-4990. And lastly, my email, and if you go to the website, you can find my email, but just to mention it, it is, CarmelValleyRX@yahoo.com and I can be reached at any of those ways and I would be happy to receive any more questions or orders for prescriptions or any needs that you have with compounding or regular prescriptions 

Linda Elsegood: Thank you.

Dr Tarek: It was my pleasure. Thank you for the invite.

Linda Elsegood: Carmel Valley Pharmacy is a family-owned independent pharmacy with a mission to provide the best pharmacy experience possible with exceptional customer service, access to knowledgeable pharmacists and cost-friendly prices. Cool. (858) 481-4990.  Call Carmell Valley pharmacy.com the friendly store for their state of the art compounding lab and waiting to help you.

Any questions or comments you may have. Please email me. Linda, 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.

Dr Sarah Zielsdorf, LDN Radio Show 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Sarah Zielsdorf shares her Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Dr Sarah Zielsdorf is a relatively new prescriber of Low Dose Naltrexone (LDN), yet her knowledge of autoimmune diseases etc. is certainly convincing throughout this interview. 

Having Hashimoto's and Hypothyroidism gives her the perspective of the patient. Her “extra" education in Functional, Integrative, and Holistic medicines makes her very qualified to treat a host of illnesses. She prescribes LDN, but does thorough tests to arrive at the best combination of treatments including diet, exercise, detox, and proper medications.

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