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. 

 

Erin Panian, PharmD, BCPS - LDN Radio Show November 2023 (LDN; low dose naltrexone)

Have you always wanted to be a pharmacist? 

I wanted to be a doctor first and foremost but when I got into college, I did an internship in the ER and figured out quickly that I tend to pass out when there's blood.  It wasn't the right path for me.
A non-hands-on approach would be a little bit better. My mom was a pharmacist and I shadowed her a few times. I thought it was neat, the knowledge of medications and what they were doing and I thought it was a fun field to get into. So, that's when I went to pharmacy school. I had a compounding rotation in my sixth year of pharmacy school. I just thought it was so fun. It's something new every day.
We get to figure out problems. Helping somebody figure something out was a lot of fun for me. To this day, it's still something I enjoy the most about the job. We always get the patients who have trouble finding help anywhere else, we're always able to try and help them. It's a very rewarding and fun job. I've been doing it now for 17 years.
Could you explain to our listeners what it is you do in pharmacy school and how many years? I know you said in your sixth year I believe seven isn't it now?
When I went to school it was six years, it's seven now. Each school is a little bit different. When I went to a pharmacy school you could start from day one and just finish, whereas a lot of other places have you do like a pre-pharm program. You might do two or four years in pre-pharm and then actually enter pharmacy school for three or four years. Mine was six years and then I did a residency training afterwards. That was at the VA. I switched over to compounding but did some more residency training after school. Some people do a year or two. I did one year and then I just entered straight into compounding from there.

What kind of things do you learn in pharmacy school? Walk us through it so we can understand what training a pharmacist has to have to become a compounding pharmacist.

It's not a lot of compounding. You get a class on compounding. One class out of those six or seven years and you learn the basics. I think the pharmacy school here has a couple of newer machines and technology that we use currently, but back when I went to school it was all very antiquated in terms of what they taught you for compounding because they didn't teach you much. It was still using an old ointment slab, a very sort of old-school Pharmacy. I always talk about compounding being an old-school Pharmacy, but with new inventions and fancier machines to help us make it more accurate, and a little faster. A lot of pharmacy school is going through all these other medications that you would see anywhere, whether it be at the hospital, Walgreens, or  CVS. It’s going through different medical conditions and learning about those, learning how the drugs work for those conditions, learning how the drugs work in the body and how they break down and get to the different tissue levels. It doesn't prepare you fully for compounding.

I always say when somebody comes to work for us it's about 75% on-the-job training because with compounding there's a lot of stuff out there that people haven't done before. A lot of what I depend on is kind of a network of compounders that you can communicate with.
I'm part of a list of Compounders from across the world and people would send an email out to everybody:” I have a patient that needs this, I can't find any data on it. What have people done? “
You kind of take your background information of conditions and different disease states, then you take your information of the drugs that you're able to utilize or the bulk chemical powders that you're able to get. Through that information, sometimes you have to figure out a unique way to give the medication to the patient or a unique dosage. It's a lot of on-the-job training and it's one of those jobs that the longer you do it the better you are. You've done a lot more. As experience goes along you get used to some of the questions, a little bit faster at being able to figure out some of the problems.

What about drug interactions? I mean that must be part of your course.

It definitely is, and it's one of the trickier parts, to be honest. As a cash-only pharmacy, we do have to make sure to take a good medication history with the patients. With people that bill Insurance, a lot of times insurance does that drug utilization review and that interaction review for you automatically.  So, when you bill the insurance company it will see even if the patient didn't get that drug at your pharmacy, it will see they got it at another pharmacy and it will alert you to the fact that it's going to interact.  Here, we don't have that because we're cash only and we don't bill insurance on that, but we're able to take a thorough medication history of the patients and there's a lot of stuff that are your common interactors that will interact with a lot of drugs.  So, anytime we see that we always make sure to be even more thorough and make sure that they give us everything they're on so we know to be able to check through those interactions and make sure it's not something that's not going to work out for the patient. 
In your pharmacy, just go through the different options that a patient can have for LDN.  
Our most common form is tablets because a lot of times patients are going to begin on a lower dose and then work up.  Tablets make it very convenient because you can split them in half.   I even have some patients that split them in quarters. Therefore, they can start with one tablet or a half tablet and then increase up as gradually as they need to, to reach their target dose.  I do find the tablets are the easiest and they are the most common with us. We also do capsules.  The only downfall with that is you can't split them. You're kind of stuck with doing one or two or three multiples or something like that. 
We can make different liquids. Liquids are nice in terms of being able to dose them because with liquids the options are endless.  If you have a 1 milligram per 1 milliliter, you could use 1 mil to get the 1 milligram dose.  If you wanted to start at 0.1 milligrams, you'd only have to use 0.1 ml. If you wanted to go up to a target dose of 4.5 then you could go up to 4.5 MLS.  You could do all your doses with just one liquid.  The only downfall is the taste.  It's not the worst-tasting medicine.  It's not the best-tasting medicine. Everybody is different in their palatability tolerances.  You've got excipients. If somebody is sensitive to the excipients. Storage it's not as convenient. Some of them are room temperature but still just keeping a liquid around can also be a little messy.  If you spill some it can be sticky. A lot of times people just prefer taking a tablet or a capsule over a liquid. We've also done cream, so any sort of topical.  We can do gels and creams. 
There is an LDN eyedrop.  That is something we were looking into providing to patients.  Being an eye drop, it comes with a little more stringent rules and testing. We do have a sterile room that we can make it in.  It's about getting the formula down and getting the testing done on it and getting that out to patients. Suppositories. I mean LDN I've seen done in almost every single dosage form we have available. We've done a sublingual, something that you can dissolve underneath your tongue.  Some patients get some GI side effects from Naltrexone so the sublingual dosing under the tongue is a good way to help mitigate those side effects.

What about fillers that you use in your preparations? 

Our most common filler is cellulose.  We do have some patients that are allergic to cellulose and from there if they need something else done, we work with them.  Generally, if just a lone script comes across, we're going to default to cellulose unless the doctor or the patient has alerted us that the patient needs to be worked with and they don't want a cellulose filler. Many times, we'll work with the patient and see what they want or need.  Whether it be with a capsule, the possibilities are pretty much endless.  We can choose something of their liking. 
Probably the second most common filler would be rice flour.  We see that a lot, but we can also do tapioca.  I've done inulin before, crushed salt, arrowroot, all sorts of different fillers, oat flour, the possibilities are endless with capsules. Fillers for liquids get a little trickier. Naltrexone is water soluble so theoretically you can just put the Naltrexone in water and dispense it to the patient. However, when it's just in water without a preservative, it can only be good for 14 days and it has to be refrigerated.  Not only do they have to get it refilled every 14 days, but they have to pay for it every 14 days. That can get a little cost-prohibitive, considering a lot of times we're dispensing up to three months for a patient and not just 14 days at a time. 
Fillers for non-water liquids. We can do oil, if they're tolerant of different oils. Again, we just come across different palatability and tolerances.  Some people just don't like that oil feel. Another liquid's available that has data on it and it's a little bit better mouth feel, but it does have different excipients in it that people may not be able to tolerate. 
So, there are lots of different options that we can work with patients to try to figure out what's going to work best with them.
We want them to get the advantage of the medicine without reacting to the excipients. We want to make sure that they're going to get the advantage of the medication. 

What disease states would you say your patients are using LDN for? 

The most common we see is any sort of autoimmune disease and that can kind of run the gamut. We have some doctors that if their patient has any sort of autoimmune condition, Low Dose Naltrexone is one of the first lines for them. GI diseases, so anything from all sorts of colitis to Crohn's, IBS, IBD.  We see a lot of Naltrexone for that. Restless leg syndrome is another common one. 
Fertility. We see a lot in women's health and we have some doctors that will prescribe it for patients having trouble conceiving or having trouble keeping pregnancies, or having a lot of miscarriages.
Depression. We see it from some different psychiatrists around town. Those are probably the most common ones that we see and then you'll have random ones thrown out there because it can be used for so many different things.  Pain is another one. We see it a lot for anything from fibromyalgia to nerve pain, to CRPS (chronic regional pain syndrome). 
We do see it a lot for pain too. I think those are the main things.  That doesn't encompass everything it can be used for.
When you talk to patients, what do you tell them about LDN and the expectations? Some people are so desperate to find an answer, they want it to work on day one. 
Oh, I know. I feel so bad for them when I tell them it's probably not going to be day one, this can take several weeks to work.  You know it is working, it's not just a Band-Aid, it's helping to work in the underlying mechanisms with inflammation and modulating the immune system.  I have had some patients call me after one day and they're like:” This stuff is miraculous!” but that is not the norm. 
Normally it's going to take a little bit to work and some patients get frustrated, because like you said, they're so ready to have an answer and they want to feel better and they've already been through so many other things. Generally, I always tell patients to give it a good three-month trial at their full dose.  Don't just give the one milligram a shot for two weeks, make sure to work up if you're able to tolerate it.  Make sure to work up and then give it a good shot at the full dose. I tell them it's not going to work for everybody but it is a great option that we've seen change lives.  It's not expensive, and the side effects are minimal and mild, generally.  I always tell them it's worth a shot. Especially with some of these patients that have just been through the gamut of doctors and treatments.  Many of them do give it a shot.
We see it very successful in a lot of patients and then I have some patients that will stop it just to say, “Oh I think I can come off of it now.”  Once they are off it for a while they are like:” Oh no I can't, I need that back.  I feel much better on it.”  It kind of helps confirm and reaffirm to them that it is actually helping them.  Well, I've been taking LDN nearly 20 years and people are worried about the long-term effect of taking LDN, but LDN generally is in your system for like four hours.  So, every day you're getting like a 20-hour break.  

What do you say to people when they ask you how long can you take LDN?

It's been studied in Low Doses now for probably about 40 years.  I always tell them that we do have data over 40 years now and that it's still not showing any long-term adverse effects. The benefits of it should outweigh any potential effects. I can't even really think of any long-term effects that they've seen from patients being on it for a long time.  You may get side effects at the beginning.  Whenever you're on it you might have some of those as you're working up, however, generally, I'm not seeing any and I don't think there's any data out there on the long term that there is any harm to taking it long term. after 40 years of studies. I always refer them to the LDN Research Trust because it kind of shows all the different studies that have been done. They love that source because a lot of my patients want to look this up, they haven't heard of it before.  So they'll see the studies for themselves and see what’s all being done and see no adverse effects of it.  It helps give them a little peace of mind also. I think that does help. They are also used to, here in America, all those commercials on TV and these drugs that come up and all the side effects are like death and brain tumors. We haven't seen any of that with this over 40-plus year study. You can feel a little better with that also. 

Well, being English, when I come to America, you have a lot of commercials on your stations and there's a really nice advert promoting some drug.  Then very quickly at the end they're saying:” Possible side effects could be heart attack, stroke, cancers.” 

I know it's terrible, possible death! You think:” Why would anybody, after such a lovely advert that makes you think you’re to feel so much better, add that you could die?
I know. I know. People just remember that jingle or something that was at the beginning.

With LDN, when you said that you could potentially have some side effects while you're titrating up when you first start, what do you tell people those side effects could possibly be? 

I see vivid dreams the most. A lot of times I warn them about the vivid dreams right off the bat and a lot of times the doctors have done that warning too.  It seems to be the most common one that the doctors warn them about, too.  We have seen that it works as well in the morning, so a lot of doctors will just proactively write for it in the morning rather than having a patient take it at bedtime. It does work on those endorphins that come at night so it does make sense that the dreams would be more vivid because those endorphins are coming out then.    I tell them that's the most common. 
The majority that I see might be dizziness, jitteriness, constipation, or diarrhea.  General stomach upset is one is one of the main ones. I tell them it's fairly mild if they do experience it, give it a couple of days before they increase their dose.  Hopefully, those side effects will kind of disappear.  If they don't and if they're up at a dose like three to four milligrams, that might be the dose they stay on. We don't have everybody that gets up to the target dose of the 4.5 but that may just be something they have to do lower than that.  I’ve seen a couple of people with anxiety, but I don't see that as much. The vivid dreams that come out probably more than anything but usually that can be mitigated by taking it in the morning. 
I never had vivid dreams, but some say these dreams are so fantastic they don't want them to end.
I have had a couple of people that enjoy them so well. I'm sure that your body gets used to it and the vivid dreams stop anyway.  Good if you can enjoy it while you can. I can't really remember dreaming. I can probably remember one dream every three years.  I'm sure I dream but I just can't remember.

Could you tell us what you think is the most common dose when somebody is stabilized on LDN? 

Four point five (4.5)  is the most common we see. Many of our patients can get up to 4.5.  It is by far the most common that we do.  The one milligram and the 4.5 are probably the two most common doses that we do. The one milligram is for when they're just starting to work up and they need that smaller dose to be able to tailor their work up. We do have a majority of patients who tolerate and can stay on the 4.5.  The two to the four milligrams anywhere in there, whether it be 2, 2.5, 3, 3.5, 4.  We do have some patients that stay on there and they're probably all about the same, to be honest.  It seems like our majority of patients are at 4.5 and then after that, it's anywhere from two to four, and those are all about the same in terms of quantities and where patients are stable. So, 4.5 is generally the most common. 

Now there are a few doctors that prescribe a higher dose than 4.5. Do any of your doctors do that?

They do, but not as much.  I do see it occasionally, like a 4.5 twice daily. Every once in a while, we do have some doctors that will go up to a five or a six. I do see the five or the six in some doctors and patients feel they're so close on the 4.5, they have faith that five or that six is going to really push them to feel they're optimal.  When they get put on the five or the six, they find it works better for them so they do stay on that. So, we do see that occasionally.  I don't know that there's much data on going above 4.5 but we do see every once in a while, for patients or doctors who think that extra little push will help. 
 

 

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

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

Wonderful. So what got you into pharmacy? 

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

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

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

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

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

What doses do you go down to? 

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

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

Can you do a sublingual LDN? 

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

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

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

Do you find the nasal spray helps with dry eye? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Does PD Labs make their own supplements? 

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

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

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

We do capsules. We do lots of capsules. 

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

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

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

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

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

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

Well thank you very much for being our guest today. 

 

 

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

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

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

How did you get into compounding? 

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

Could you tell us what forms you make of LDN? 

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

Did you learn about LDN in pharmacy school? 

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

So how did you hear about LDN? 

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

How long ago was that? 

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

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

Probably about 30 or so patients on it. 

How many doctors are sending scripts to you? 

About 10 or 11 right now. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Linda Elsegood: 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: Today we're joined by Kay from the United States who uses LDN for Hashimoto's Thyroiditis and fibromyalgia. Thank you for joining us today. Kaye. Thank you for having me. So could you tell us how long ago was it when you first got sick?

Kay: Honestly it was probably 40 years ago. I'm 58 now and when I completed high school, I started having symptoms of thyroid problems. So it was it was a very long time. So what did they do at that time, such a long while ago? They told me it was anxiety and they totally the doctor totally blew it off and they never did any sort of testing. They never did blood tests. They didn't do an ultrasound; they didn't do anything. Even though I had a constant sense of a lump in my throat and issues with sleeping and anxiety, and quite a number of issues that come with thyroid problems. And it wasn't until after I was married and I had two young children and I was working full-time that I just simply got to the point where I just felt like I couldn't function. And I went to the doctor. And he finally took it seriously. That was a different doctor, but unfortunately my labs for my thyroiditis all they ran was simply the TSH and they said, oh you're perfectly fine and they diagnosed me with fibromyalgia at that time. So I was kind of stuck with that diagnosis for a period of time as well, without any real good answers at that time.

And that kind of progressed, and it was probably another five years or so before anything more significant came out of that. I noticed one day a very large lump in my throat and went to the doctor, ended up with a surgeon and had my thyroid removed, and they diagnosed me as having Hashimoto's. I had two different types of growths on my thyroid and a very large cyst, and the surgeon actually said that it was the most diseased thyroid he had ever seen, and he was absolutely convinced it was cancerous. It turned out not to be, but it was clear why I had been so ill and having so much difficulty in functioning at that point. 

Linda: Wow. So what did they put you on once they removed the thyroid? 

Kay: They simply put me on just a T-4 only medicine and I felt absolutely terrible, and I literally thought that I was going to die. I thought the doctors were going to let me die. At that point my children were probably 14 and 16, and I simply just hoped and prayed that I would live long enough to see them graduate from high school. That that was how bad I felt.  I could I could hardly function. I was continuing to work full-time because I needed to, but I did not have any emotional capacity to deal with raising teenagers and having a husband and living life. It was just incredibly difficult and I just started googling and looking for answers, and thank goodness for the internet these days, right, because you know we can find stuff we couldn't find before So, I ended up at a doctor that was more holistically minded, and that doctor put me on Armour thyroid, so I had the T-3 and the T-4, and I started to feel like okay, I can live now; I can start to function. But I was still having a lot of issues, a lot of fibromyalgia pain.  I was having terrible insomnia. I was on multiple medicines to sleep. Dealing with a lot of anxiety, IBS, TMJ; I've got a laundry list of acronyms that I was dealing with. I came upon low-dose naltrexone myself, and I approached my doctor and asked her if she would prescribe it and she said yes, that she had a number of patients on it and she was happy to prescribe it.  So I kind of got lucky in getting a prescription for it. 

Linda: How did it affect you when you first started? 

Kay: When I first started taking it, really the only side effect I had was just vivid dreams. And I think I started it I 1.5 milligrams. That was fine. Did that for two weeks, bumped to 3 milligrams. That was fine, and did that for a couple weeks. Then when I bumped to 4.5 milligrams, I started to have some of the vivid dreams, and I bounced back and forth between 3 milligrams and 4.5 milligrams for a couple of weeks until I could just consistently stay at 4.5 milligrams.

Linda: And how long ago was that?  

Kay: That that was about 12 years ago. 

Linda: Well so you've been on LDN a long time.  

Kay: I have been quite a while, and I'm still on it. 

Linda: And do you have any thyroid issues now at all?  

Kay: I'm still dealing with some issues. About 4 years ago I ended up exiting a very toxic marriage, and doing that helped tremendously in reducing the amount of stress and anxiety in my life. I ended up changing to a different doctor, who really encouraged me to change my diet dramatically. So I eliminated all grains and all sugar, and that has helped tremendously. Reducing the stress, getting out of a toxic environment is huge. Just the emotional stress that happens takes a very physical toll on our bodies, and I think that often we underestimate the impact of it. And so for me, low dose naltrexone is part of a bigger package of things that I do to take care of myself. It wasn't the magic elixir that solved my whole life problems, because I had a number of things going on in my body, and a number of things going on in my life that needed additional changes to really create an impact.

Linda: What about the fibromyalgia pain? Is that under control? 

Kay: It is really under control. I'm struggling with a torn rotator cuff, and so another problem like that, it still throws your body off. As you age other things start to go awry as well. But no as far as fibromyalgia goes; no I don't really have any fibromyalgia pain. In fact three weeks ago, I went on a hiking trip with a friend and I had no pain and no stiffness and no soreness after hiking like 15 miles a day through fairly rugged terrain. 

Linda: So that speaks volumes, doesn't it? 

Kay: It does speak volumes.

Linda: Now I probably know the answer to this question because you spoke about diet, which was going to be one of my questions. But because your doctor was looking at your whole body, not just your symptoms, did she recommend supplements for you to take as well?

Kay: This doctor is a male; it's different. He also was willing to prescribe low dose naltrexone, and he knows what supplements I am on, and he has not necessarily recommended that I change them, or that I add to it. I am on a number of supplements.

Linda: Do you take probiotics?

Kay: I do take probiotics. I also take magnesium, Vitamin C, Vitamin D3 and K2. Those are kind of my staples.

Linda: Yes, when I ask doctors what supplements they recommend, probiotics is always up there as the top one, as is Vitamin D. You're doing remarkably well. I can't believe that somebody who must have been like 14 at the time, had all these problems, and they were just swept under the carpet. But so many people tell me that years ago, and not that many years ago either, that it's all in your mind; there's nothing wrong with you; it's all in your mind, or you're depressed and give you antidepressants rather than finding out why you've got the symptoms, finding the root cause. I'm just so pleased that you have managed now to get your life back on track where you feel you're in control and you can enjoy a good quality of life 

Kay: Honestly I feel better now than I did 20 years ago. I have I have no anxiety anymore; I used to have a lot of anxiety. I had issues with sleeping; I am off all of my sleeping meds; I only use melatonin now for sleep. I used to live on over-the-counter pain medicines, Tylenol, ibuprofen; I only take them very very rarely now; maybe once a month rather than three times a day or more. Just so many things that have resolved.

Linda: That's amazing, because all the medications that you can take, some of them are quite toxic and also all medications carry the risk of some side effects, and the more medicines you take, the higher the risk of getting side effects, and then you end up taking the magic pill to combat the side effects that the original pills have made. So to actually cleanse your body of all of these other medications that you're taking, even though you're 20 years older now, you said you felt better; your body is 20 years older, but you're still feeling better than you did 20 years ago. That's amazing, isn't it? Apart from your shoulders - hopefully that will heal soon. How did you hurt it?  

Kay: I had a bone spur that tore the supraspinatus, which caused too much stress on the infraspinatus and so that one also had a tear, and kind of the whole the whole shoulder system just went downhill. We're still working on that. 

Linda: So you just want to rest it.  Are you, as much as you can? 

Kay: Trying to rest it, and then also exercise it and strengthen it, it’s working well. 

Linda: Well that's it: if you don't use it completely, you lose it. Well thank you very much for sharing your story with us today, Kay. Very remarkable. You're an amazing lady. 

Kay: Oh thank you, thank you. Now I just wish everyone well who tries the low dose naltrexone. Just don't underestimate the impact of changing little things in your life, because lots of little things add up to significant differences.

Any questions or comments you may have please email me, Linda, at linda@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.
 

 

 

Linda: 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: Today we're joined by pharmacist Sherry Galvin from the Compounding Center in Leesburg, Virginia. Thank you for joining us today Sherry. 

Sherry: Oh, thank you Linda for having me. It's always a pleasure. 

Linda: So can you tell us what's been happening in your pharmacy. 

Sherry: Sure, yeah.  I guess the latest related to naltrexone or low dose naltrexone is we gave a lot of thought to what causes problems for patients taking low dose naltrexone, or really any chronic medication that they have to stay on long term, and the biggest thing that sort of jumped out at us was compliance. You know, making sure that the patient understands the importance of taking it daily.  That the patient can take it daily and starting to drill down into that we unpacked a few things that seem to be important to patients.  You know one specific to LDN was getting that dose right. The tapering up to find that magical dose, but not having so much that you start getting side effects.  So, finding the right dose was important.  Having the therapy be affordable was important, and convenience and sort of being easy to take were other things that patients would give us a lot of feedback on.  As compounding pharmacists, we like to think of ourselves as troubleshooters.  So from there we take that and sort of say okay, well, how can we help our patients make sure that they are compliant on this therapy? And we ended up developing what we call a flex dose tablet.  We have LDN flex dose tabs, and it allows the patient to taper their dose very easily without having to purchase multiple different strengths.  They can get one tablet that is scored four ways. It's very easy: you literally just touch on it and it'll snap in half, and you press down again it'll snap into quarters.  So, the doctor and the patient can work together to make sure that they're finding that magical dose, but not so much that they're getting side effects.  So it does allow some flexibility for the patient to go up or down, and again, without them having to purchase multiple different strengths.  Hopefully they're therefore making it affordable.  

The other piece of that is realizing -  and I know a lot of pharmacies do this - realizing that our patients need convenience. They don't want to remember it's time to call and get my prescription refilled, or even realizing they’re out of pills and don't have any refills.  Then that gap in in therapy happens. So we instituted what we call an auto-refill program, and the patients can self-enroll. It's not automatic. They choose to enroll or not, and we will reach out to them about a week to 10 days before their medication is due to run out, and say hey, we're gonna get this ready for you, we're gonna go ahead and ship it out to you, let us know if there's been any changes.  And we've had tremendous feedback from that.  It's just one less thing they have to think about in their lives.  

So that's kind of the latest things for us, the LDN flex dose tablets, and the auto refill program that goes along with it. Other than that, just sort of bouncing back from COVID-related things, and being thankful that we don't have people lined up out front waiting for a shipment of masks.  It was such a crazy time.  So it feels a little bit more normal in here now. 

Linda: So, when you collate your patient feedback, what has been the experience with side effects? What side effects have been reported to you if the dose has been too high?  

Sherry: Initially, the biggest complaint we get is sleep disturbance of some sort. They might say that they can't fall asleep, or that they're having such vivid dreams that they don't feel like they're getting quality sleep, and oftentimes the physician will just recommend that they either switch the dose to the morning, or that they back down a notch on their dose to see if that fixes the problem.  Occasionally we'll get a person tell us they'll have some GI side effects, but not very often. This drug is so well tolerated compared to other things on the market. We really don't get a lot of complaints about side effects, thankfully.  

Linda: And what about feedback of good results?  How long does it normally take a patient before they can say, "I noticed that it's working for me."  

Sherry: Yes. I sometimes will have a patient tell me after two to three weeks they'll start to notice some effects, but usually it's around two to three months that they'll say hmm, you know, looking back I realize my joints aren't as swollen or stiff.  Or, I am getting better rest, I can exercise a little bit more than I used to be able to, and you know I'm a big fan of a symptom diary,, for lack of a better term to call it.  Because a lot of times the changes are not miraculous, but when they start really documenting how they're feeling each day, and even putting a number to it, you know, scale of one to ten, how's my pain today; scale of one to ten how's my energy level today? It really gives you a little bit more information to compare today from two months ago, instead of just saying I'm not sure this is working. The other thing that we sometimes see happen is they'll think this drug is not doing too much, and they'll stop taking it. Then that's when they realize oh wow, it really was helping me.  I just wasn't tuned into how much I had improved.  So that's the other thing that we hear occasionally.  

Linda: And what do you say to patients when they say they don't think it's working for them?  How long should I  take it before I stop and say it's not for me?  

Sherry: We usually try to talk to them about their dose and just ask where are they?  What have they done?  Did they taper up?  Are they too high?  It seemed like everybody was going for that 4.5 milligrams per day for the longest time.  And I think now prescribers really do realize there's a milligram that works for everyone, and it's not all 4.5 milligrams. Have they overshot the dose that is needed for their condition?  We usually start there and talk to them about what dose they are on.  What dose have you tried?  How quickly did you go to this dose?  Those sorts of things. But we do try to encourage them to at least give it a four to six month trial before they say this drug hasn't helped.  Because we don't want them to abandon therapy too quickly. 

Linda: We did a survey several years ago now and found that LDN did something for most people, even if it was stopping the progression. If they were having a rapid progression, it had halted that. But there were a few patients that it had halted the progression but it hadn't actually helped with any symptom relief. And then in between 15 and 18 months when you would think they wouldn't notice anything else they then started getting symptom relief. That was quite an unusual thing. So we actually say a lot longer than you.  If you're okay taking it and you can afford to take it, we would always say take it for like 18 months before you give up. And exactly what you were saying when people say no definitely not working for me; no, I'm going to stop within two or three months they want to get back on it again because they had forgotten just how ill they felt previously.  Yes. Yes that's  always a thing isn't it. So in your practice, what would you say at the moment is the main condition that you're using LDN for?  

Sherry: I would say the main condition would be the sort of the grouping, and I don't mean to say they're the exact same thing, but the grouping of either chronic fatigue syndrome or fibromyalgia seems to be the biggest, but we do have a lot of patients who have various autoimmune conditions, whether that be rheumatoid or psoriatic arthritis, things along those lines. Irritable bowel, Crohn's, that group of people as well would probably be the next biggest category, if I could put them in a group. But it's amazing what we hear people using it for, always seems to be some new thing, although probably if you drill down to it, a lot of what we hear complaints about are somehow connected to either autoimmune or some kind of chronic inflammatory cause. 

Linda: And the patients with CFS, ME, fibromyalgia are usually the patients that have ultra-sensitivity to drugs, any drugs, and especially LDN.  So usually in my experience, those people don't even start on 0.5, they quite often have to start even lower and have to titrate it slowly, as their system gets used to it. Is that what you found in the pharmacy?  

Sherry: Yes, and a lot of times these patients also come to us with other sensitivities that make them very concerned about the medication, so  one of the things that we like to make sure is, we keep it simple, make sure that the tablet is as clean as it can be with no allergens in it, no fillers that would cause any sensitivities, because we do see that a lot with our patients. They have a lot of sensitivities. So yes, very low dose, ultra low dose if you want to call it that, and a slow taper.  That's the other thing:  a lot of times, especially more at the beginning when we were beginning to use this years ago,  we would see where the prescription would be written “Take one dose for a week and then increase for a week and then increase for a week”. We typically go a little bit longer, a little bit slower taper if you will. 

Linda: In your pharmacy, you were saying about being careful of fillers. etc. What different dosage forms do you compound? 

Sherry: We do a liquid dosage form for patients that need a very low dose. It can be done as a drop under the tongue, is what we normally recommend. We have immediate release tablets We have an immediate release flex dose tablets that I described earlier that can be broken into quarters. And we also do capsules. We still have some call for capsules.  There are patients who, for whatever reason, don't like the tablets. And where the oral dosage forms are fairly small, the tablets are approximately the size of a mini-M&M, and the capsules are about that size around, but maybe a quarter of an inch long. We try to keep them small, because we do have patients that will complain of trouble swallowing. 

Linda: You do a cream or….

Sherry: Sorry, I missed that.  Yes, for our derm patients we do topicals for different skin conditions. The other thing that we have recently been requested to make is topical formulations for  veterinary patients. Not so much for cats because they just lick everywhere, but dogs, if they have dermatitis or allergic reactions, we have found that topical LDN is very helpful. We also had a request for an LDN vaginal product, only once, but we have done that as well. 

Linda: What about eye drops and nasal spray?

Sherry: I have not had a request for that. We do a lot of different nasal sprays, but we have not done LDN in a nasal spray to my knowledge. Eye drops get a little bit tricky in the US, because of our regulations. Oftentimes when you're making a sterile product, which an eye drop would be a sterile product, the expiration dates are so short that it makes it almost  impossible to be a reasonable therapy - you can't have the patient come back every three days for a new bottle of eye drops - without a bunch of stability studies, which then shoots the cost of the preparation up so much the patient can't afford it. So eye drops do get a little sticky in terms of nothing having to do with the ingredient, more to do with the regulations. 

Linda: There are pharmacies that do eye drops for dry eye and Sjogren’s syndrome.  But I've also been told that the nasal spray helps with dry eye as well. 

Sherry: That is a very interesting concept, because there's just been a drug released on the commercial market in the US that is a nasal spray. Its indication is for dry eye. So a very interesting thought, yeah. We may have to talk to some of our ophthalmologists around the area, because we do have a lot of dry eye. All of us are in front of our computers way too long now,  right. Yeah, especially the last couple of years. So dry eye has really gone through the roof. Excellent tip. I'm gonna take that and talk to a couple of our ophthalmologists around the area. 

Linda: Well let me know how it gets on.  I do have dry eye, and I might have to have eye surgery, which is scaring me, but I would love to get hold of some nasal spray. So next time I'm in the US, I'll probably visit a doctor and see if I can have a prescription for dry eye. That would be here quite good. 

Sherry: Yes, yeah, that's a that's a very interesting thought. Yeah.

Linda: Even though it's not actually directly in your eye, when you squirt it up your nose or passage, of course it's getting up into the inside, isn't it? So it makes sense to me that it would potentially work quite well. 

Sherry: Yes, yep that does make sense. 

Linda: Well it's been wonderful speaking with you today Sherry, and I can't wait till next time. 

Sherry: Oh, thank you so much.  I hope you have a wonderful day and I appreciate being able to catch up with you.

Linda: Any questions or comments you may have please email me Linda Linda 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

 

 

Asher Goldstein, MD - LDN Radio Show 2022 (LDN; low dose naltrexone)

SUMMARY
Over the past 2.5 years that Dr. Goldstein has been prescribing low-dose naltrexone (LDN), he has shifted to a much lower and slower titration pack. He uses it for many applications in addition to pain, such as fibromyalgia, Crohn's, rheumatoid arthritis, multiple sclerosis, Hailey-Hailey, polycystic ovary syndrome (PCOS). He gets referrals for LDN prescriptions from pharmacies. He is quite impressed with how LDN works against pain, and discusses prescribing for pain. Onset of action can be short, or months, depending on various factors. He is very open to help educate healthcare professionals about LDN.

TRANSCRIPT
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 we joined pain specialist Dr Asher Goldstein from New Jersey. Thank you for joining us today.

Dr. Goldstein: Good afternoon, Linda, how are you?

Linda Elsegood: Good thank you. So, could you tell us what's been happening in your practice with LDN and pain?

Dr. Goldstein: I've been practicing now just about 15 years and only started using LDN about two and a half years ago. What's actually interesting is that I just attended a conference on Friday, two days ago, and when I last attended that conference in 2019, which was you know BC - before COVID – I had not even thought of LDN. I remember just flashing back to those three years previously. There was nothing about LDN said. I had nothing in my recollection about LDN. And interestingly enough, three years ago I went as an attendee, and this year I was invited to speak about LDN. So, they were very curious, and out of about a hundred doctors, pain specialists only about five had even heard about LDN. So, it was a very receptive audience with a lot of questions and answers during the non-technical sessions, just floating around. So, it was very good, and hopefully there'll be 95 other doctors that can help their patients as well in regards to LDN use and prescribing in the pharmacy.

It has developed and transformed dramatically over the past two and a half years that I've been using it. I've shifted in how I prescribe low-dose naltrexone.  I've gone to a much lower and slower titration pack. I start at half milligram, and I only go up by a half milligram a week. I have a compounding pharmacy that has made a Dr Goldstein titration pack, and by and large, the issues that patients had previously with side effects are 99% gone. I think I've had one or two patients stop LDN because of side effects in the last year, and that's nearly none. Everybody reports dreams at some point in time, but when they're warned about it, it's usually not an issue, and most patients will move their once-a-day medication to the morning, as opposed to the evening; and then generally, those patients move it back to the evening a few weeks later.

I really branched out and started using LDN in in many many applications, especially with patients that have come to me, not necessarily all the time with a specific diagnosis. I'll have patients come who have been in pain for 15 years 20 years. They've had a rheumatologic test here or there that sometimes shows something, sometimes doesn't. They don't have anything specific. They're feeling run down, they're feeling exhausted, and they're in pain and nothing else has worked. LDN seems to work very much for these patients even though they don't have specific diagnoses. I'm not even counting the patients that we're treating from a pain perspective, you know, rheumatoid arthritis, multiple sclerosis, fibromyalgia, Crohn's, you know the list is big. It's big and hopefully we'll get bigger. The list that we have has people that we can treat. I'm treating people even with non-painful conditions. I have a patient with Hailey-Hailey. My dermatologist friend was very upset with me because that's supposed to be his field. I'm like, I use LDN. He's like, hey I use LDN too. How did you know that it was very good? And then, polycystic ovary syndrome. Some patients have become referred from different pharmacies, so even patients without pain are coming just for the LDN.

I read extensively about it in the beginning, and you're like okay, I think I should use this. But then as a practitioner, once you actually see the proof in the pudding, it's amazing, just amazing. For me it has completely transformed my practice, and where some of the patients with difficult to treat pain syndromes are less difficult to treat pain syndromes now. So, it's been fantastic.

Linda Elsegood: So, the million dollar question that everybody asks is, I've been on pain medications for the last 20 years. Those pain medications aren't working. I'd like to try LDN. How can I go about starting?

Dr. Goldstein:  I tell the patient, but they'll usually say to me, the pain medications help me get around, but they don't really treat me well enough. They allow me to get out of bed. I tell them, a hammer can also put a screw into the to the wall, but a much better tool will be the screwdriver, right? And it makes less of a mess. So the opiates are the hammer, and it's hard, so you can either go the quick way, which is a little more difficult, or you can go the slower way, which is difficult in its own way. But look, if somebody's been on opiate medication 50, 20 years, they have to significantly reduce their load. Some doctors will want them to be completely off pain medication. I find that if we can reduce it to maybe 40 or 50 morphine milligram equivalents (MME) and people can look up what MMEs are online in regard to their particular medication, and how to convert it to MMEs. There are conversion calculators. But usually about 40 to 50 MMEs can still be handled with LDN as long as it's not extended-release medication. For example, oxycodone, a combination of acetaminophen, also sometimes known as Endocet, or Percocet in the United States. If somebody's taking seven and a half milligrams twice a day, three times a day, I can actually work that in together with LDN. I tell my patients as long as you're not taking the opiate medication four hours before or four hours after LDN, you should be okay. You can take it the other 16 hours of the day as long as you need, if you need to. For example, if they go to sleep at 10 pm and that's when they take their LDN, their last Percocet can be at 6 pm and the first one could be at 2 am if they wake up in the middle of the night. But between 8 pm and 2 am, this particular example, they can't take it. Now if somebody's on a higher dosage of that, they have to reduce it or eliminate it, and that could either be done over time with slow titration, or that could be done through medication withdrawal using suboxone. Both of them have their pluses and minuses. The suboxone is quicker, but it usually requires a patient to go through 24 to 36 hours of moderate discomfort. I call it going through the ring of fire, as until the suboxone kicks in. In order to help the patients, the other way is two to three months taper of lowering the opiates while not getting the LDN yet, which can also be uncomfortable, but it can be done. The bottom line is you don't have to eliminate it completely. It just has to be reduced.

Linda Elsegood: Okay, so what have the outcomes been, as in a time frame for LDN to actually start to work?

Dr. Goldstein: It's a huge variety of time for onset. I've seen as quick as a week. I've seen as long as six months.  The main thing is talking to the patients, realistic expectations, and setting an education, meaning patients have to understand that there are many different ways that people respond to the medication. Typically, patients with fibromyalgia go quicker; patients with things like polycystic ovary syndrome (PCOS) take longer. I've seen the patients with Crohn's - those go pretty quick. In general, the medication helps patients whose diseases have two things in common:  the immune system dysfunction - I don't like to say autoimmune, I like the “immune system dysfunction”; as well as an inflammatory state. In those patients that have more inflammation than immune system dysfunction, I find that the medication works quicker. And those patients that have more immune system dysfunction than inflammation, it takes longer. That's been my sort of empiric view of what I've seen.

And again, DNA is what really rules everything, so you can have the same disease in two different patients and they respond completely differently. My lowest dose to start LDN has been 0.3 milligrams, and I actually have one patient now, with polycystic ovary syndrome, at six and a half in the evening and two milligrams in the morning, so eight and a half milligrams. In the beginning I would have never even thought that a patient could respond at so low or so high, but what one thing I've learned about LDN is that don't ever put yourself in a box. You could, because LDN constantly is evolving in my mind, its use and how patients respond to it.

Linda Elsegood: You were saying there about the dosing range - have you gone higher than six and a half milligrams?

Dr. Goldstein: Not me personally. I have not had the need to. In a single dose, I haven't done higher than six and a half, but I have done the daily dose high of six and a half.

Linda Elsegood: Do you ever prescribe it more than twice a day?

Dr. Goldstein: Twice a day, okay, I'm open to it, but with those patients that I've found the need for the twice a day is usually where the second dose is having to deal with mood or energy versus pain. So those patients, once we get the second dose in the morning, that usually stabilizes them. That's typically why I'm giving a second dose. It's not necessarily for the pain, but more for the mood and energy. and as you say, everybody is individual, the dosing is individual. There are some doctors that are getting the patient stable, let's say on 4.5 milligrams, and then they will do a second dose in the morning of 4.5

Linda Elsegood: And you're doing it at a lower dose in the morning, but higher in the evening. It is so patient dependent, on what works best for that patient. How long would you say it takes to find that right dose for a patient?

Dr. Goldstein:  The right dose can work in as quick as a week. It's highly unusual - but that's the quickest. And I actually didn't believe the patient, so I sort of pushed them to go higher. Then they felt worse, and then I'm like okay, listen to your own advice, listen to the patient. We went back down to half milligram. It can take as long as six plus months. There's just a huge variety of responses. But like I said, the inflammatory-state patients respond quicker; the more immune dysfunction patients take longer. But the majority of patients that I've seen, that they're having their disease 5, 10, 15 years, so these patients have a lot of patience, typically, and as long as they perceive that the doctor is working together with them, listening to them, acknowledging, a lot of patients say to me, my family thinks I'm crazy, my doctors think I'm crazy. I'm like, you're not crazy, you have an atypical medication and an atypical issue, and atypical issues are sometimes difficult to deal with. When people don't want to deal with them, then sometimes we put names and labels on them.

Linda Elsegood: So for those patients who are on a very low dose, and LDN is working fine for them, do you try further down the road to increase that dose, or do you just…

Dr. Goldstein:  I mean, if it ain't broke, don't fix it kind of person, so usually not. I actually had a patient in this morning who said to me, and this is a person with a lot of both back issues as well as immune dysfunction issues, and basically it was fibromyalgia when he came in, and fibromyalgia is not a typical diagnosis in men, but this gentleman came in and I examined him. He was operating, he said, at 20% capacity when he started, and now he's at three milligrams and he's operating at 70% capacity, and he says, I'm happy where I am. He says, I don't want to push it any further up or further down. I'm worried that if I go up it'll be worse. He says 70% is a huge change from where he was. So again, if a patient wants me to push a little bit, I always tell them we can always move. I can write quarter milligram pills. If you can gently push it up or down, you have that ability. It's not a medication that's fixed in any which way. And then I speak to them that their need for the dose may increase or decrease with time, so they should just be aware that it's not fixed in stone. I even tell patients four and a half milligrams is just an aiming point. We have to aim somewhere.

Linda Elsegood: So, you can't see all the patients with pain around the world. What would you say to doctors who are presented with patients with pain, who don't really know anything about LDN, and don't feel confident prescribing it?

Dr. Goldstein: If I was able to spend a half an hour of educating a doctor, I get much more return on investment than half an hour educating the patient, right, because I can help one patient, but that doctor can help 100 patients a week. That's why I really want to go to the conferences that are not LDN conferences, and speak about LDN, and encourage doctors. I say, you know the upside is that it's relatively inexpensive, there are very few if any side effects, and very few if any drug-drug interactions. The downside for doctors is that you got to talk to your patients, but some doctors don't like to do that, strangely enough, as bizarre as that sounds. But that's really the downside - having sometimes to convince a doctor when they're like, I don't have the eight minutes to spend with the patient additionally, to speak with them about LDN. But I'm like, well first of all, you invest those eight minutes and they're going to wind up coming to you much less, complaining much less, taking up less of your time, because their pain is less, and if you can't do it, send me your Nurse Practitioner or your Physician Assistant. Let me educate them, and they can help the patients. It doesn't have to be you. As long as you're a doctor, there can be things that they don't quite understand, and you can help. You don't always have an exact formula on how to treat a patient. Sometimes, if the disease is not exact, then the medication doesn't have to be exact.

Linda Elsegood: So how can people get hold of you?

Dr. Goldstein: They can call my office, Asher Goldstein, 201-645-4336, and make an appointment, then we can take it from there. If there are physicians that are listening to this, and you want to spend some additional time with me, I'll spend half an hour or an hour. I'll go out to dinner, I'll have coffee; we'll figure something out, because for me to help a medical professional understand that this is about as benign of a medication as possible, and it can help all those patients, that when you see those patients on the list and you're like oh my god how am I going to help this person today?

I wish I found this medication years ago. Maybe I would have ripped the hair out of my head. I tell my patients this medication doesn't do anything to you, which is why there are no side effects. They're like well, why am I going to take it if it doesn't do anything to me? So, I say, this medication allows your body to start working for itself again. That's all it does. It blocks a receptor for three to four hours, that's it, nothing else. And it does that for three to four hours, then the whole magic happens - the magic of normal level of endorphins, that is. That is the secret sauce, right? Bring the endorphin levels back up to normal, and then the body has the fuel that it needs to do the myriad of chemical reactions that normal levels of endorphins allow.

Linda Elsegood: Well, thank you so much for sharing your experience with us today. I mean, it's fantastic what you've done in such a short period of time.

Dr. Goldstein: I look forward to helping more patients, and I look forward educating more medical professionals.

Linda Elsegood: Thank you, thank you. Good to see you. Hopefully next time, in real life

Dr. Goldstein:  Yes, thank you, and take care. You know, I give your story when I lecture. I say look, there was this woman who was told to park herself at the corner, and she refused to take that for an answer, and because of her, I'm here today.

Linda Elsegood: 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.

 

 

LDN Webinar Presentation 18 May 2022: Dr Masoud Rashidi - LDN, Dosing, Fillers and Compounded Options. LDN, ULDN and Pain/Opioid Issues

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

 

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

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