LDN Video Interviews and Presentations

Radio Show interviews, and Presentations from the LDN 2013, 2014, 2016, 2017, 2018 and 2019 Conferences

They are also on our    Vimeo Channel    and    YouTube Channel

Sue - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

First diagnosed 1991 Sue’s initial symptoms were numbness in her feet, then up to her waist. Sue went to her doctors and was referred to Harley Street where she had all tests done but for reasons unknown the specialist didn’t tell her she had MS, it wasn’t until she went to her GP that she was told she had it. 

At that time the symptoms had gone temporarily so she carried on as normal. Symptoms returned years later much worse. By the time she was 48, she had to give up work and driving and move to a bungalow because she could no longer get up the stairs. 

Sue was diagnosed with primary progressive Multiple Sclerosis and she wanted to try stopping the progression as much as she could.  She started Low Dose Naltrexone and stopped for 3 months to try another treatment but she went downhill quickly and started LDN again.  

With no side effects, she found that LDN did slow the progression of her MS and feels that her progression would have really accelerated without it. 

Sue - England: Melanoma, Brain and Lung Cancer (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sue was diagnosed with secondary melanoma in her lymph nodes in her groin in 2000.  Seven years prior to that she’d had a small spot on her leg which was removed and analysed and she was told that it was all clear - unfortunately it wasn’t clear at all and so continued to spread untreated. For the secondary melanoma Sue was put on a five year trial of interferon which, at the end of the trial, actually worked, there were no signs of cancer.  Then in 2008 Sue started to suffer spasms and went to see her GP who sent her for tests. Sue was then diagnosed with several brain tumours, more lymph nodes cancers and lung cancer. Sue had a tumour removed from her brain that year and gamma knife treatment on other tumours that were too deep to operate on. She had many operations to remove other tumours that could be reached and had her right kidney removed. The tumours were pretty much everywhere.  

Sue started taking Low Dose Naltrexone (LDN) in 2010 and as of 2013 her scans have shown all clear, the tumours reduced and disappeared.  A remarkable story from a remarkable woman who has been through so much.

Listen to the video for the full story.

Any questions or comments you may have, please contact us at contact@ldnresearchtrust.org.

Steven - Scotland: Primary Progressive Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Steven from Scotland has been taking Low Dose Naltrexone (LDN) medication for four months now after being diagnosed for Primary Progressive Multiple Sclerosis (MS) and Spinal Stenosis. 

He was unable to get a prescription from the doctor so had to purchase himself, with no regrets. Steven said it was not too expensive and advises people to take it, that being not too expensive and changed his life for the better! 

Summary of Steven’s interview, please listen to the video for the full story.

Any questions or comments you may have, please Contact Us.  I look forward to hearing from you

Key Words: Multiple Sclerosis, Low Dose Naltrexone, LDN, MS, Spinal Stenosis

Dr Yusuf (JP) Saleeby, LDN Radio Show 08 Feb 2017 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Thank you for joining us today, Dr Saleeby. 

Dr Yusuf Saleeby: It's very good to be here, Linda. 

Linda Elsegood: Wonderful. I wonder if you could tell us first of all, about yourself and how you got interested in medicine. 

Dr Yusuf Saleeby: Well, that started at a very young age, while I was living in Beirut Lebanon. I was very close to the AUB hospital. My father worked for a pharmaceutical company, so I always had an interest in medicine and science. And then I had a very pivotal moment in high school with a fantastic biology botany teacher who got me really ramped up about the sciences and about biochemistry and botany and biology.

And all through high school and undergraduate I always had my eyes on medicine. At the time I was in Atlanta, Georgia and went to premed at Georgia Tech, Georgia State University, then onto medical school in Augusta, and I did my postgraduate training up in North Carolina and then kind of settled into the Southeast, covering the Carolinas and Georgia. Mostly the first part of my career was in emergency medicine. So I had a very traditional conventional medicine career as an ER doctor. 

Linda Elsegood: Okay. So how did you get involved in therapies such as LDN? 

Dr Yusuf Saleeby: Well, in my 20 plus years in the emergency room, I saw on a daily basis, the ravages of chronic disease, a lot of which I perceived as being completely preventable. And so during my last 16 years in the emergency room, I sort of developed a curriculum to learn about what I could possibly do for patients before they reach that end-stage of chronic disease, whether it's cancer, congestive heart failure, autoimmune diseases.

It was terrible. It was depressing seeing these folks come into the emergency room. So for 16 years, I developed a curriculum where I looked at other options outside of allopathic medicine, in the integrative field and functional medicine. So I kind of built on that, with members of different organizations and going to different conferences, I kind of developed a passion for functional and integrative medicine. And that's what I've totally dedicated the latter part of my career to. I retired from emergency medicine five years ago, and I do strictly functional medicine now. 

Linda Elsegood: And how long would you say you've been prescribing LDN? 

Dr Yusuf Saleeby: Well, I've read about it peripherally, heard of it in some of the conferences I attended, but nothing until about three or four years ago, when a patient of mine who was suffering from Hashimoto's brought it to my attention and passed along a big stack of papers that she acquired doing research online.

So I've also learned from my patients. I'm never afraid to learn information from my patients. So I decided this was interesting enough for me to go after and learn more about it. A good friend of mine a couple of years ago - he's a PharmD, a pharmacist,  and does some research in North Carolina. I attended last year's conference in Orlando and came back with a wealth of information, and he was very excited. So that actually ramped up my prescribing. I dabbled in it for a couple of years, but then as about a year ago I started writing heavily for LDN and implementing it in some of the programs and protocols that I have established for my patients, especially with Lyme disease.

Linda Elsegood: And you were telling us before we came on air, where you practice from, and you're going to have a new centre soon. Would you like to tell us about that? 

Dr Yusuf Saleeby: Sure. So my first centre - I'm kind of headquartered in a little coastal town just North of Charleston, South Carolina - it’s called Murrells Inlet, and we opened up a second satellite office in the Raleigh-Durham area of North Carolina. That was about two years ago. And last year we opened a small satellite office in Charleston, South Carolina, a little area called Mt Pleasant. 

I was approached by another holistic provider and also a licensed acupuncturist and TCN specialist about a year ago about collaborating on an effort in Savannah, Georgia. So I'm happy to announce that in March of this year we'll open up another office in collaboration with another integrative healer for functional medicine practice. 

Linda Elsegood: Could you tell me what's the satellite centre? 

Dr Yusuf Saleeby: Well, we say satellite office - it's a smaller office, kind of a micro office. We don't have a large space nor do we have a large number of staff. It's actually a very personalized one-on-one, and it allows us to actually go to where the needs are. I find that with my practice I was getting referrals from all over the Carolinas because I'm one of the very few practitioners in ILADS members. So I had to kind of position myself to where a lot of patients were coming from, to make it more convenient for them. 

Linda Elsegood: Talking about Lyme disease, how many Lyme disease patients do you think you've seen in the last five years? Has the number increased? 

Dr Yusuf Saleeby: Hundreds. I think because it's been over-politicized and it's very difficult to make a diagnosis, I think there's a lot of misinformation and misunderstanding about Lyme disease. And I think a lot of people just don't get diagnosed. 

The CDC is saying within the last two years that the numbers are around 300,000 new cases in America alone. That was up from about 30,000 prior to 2013. So there's obviously some issues with their counting new cases, but ILADS estimates that there's anywhere between 800,000 to a million new cases of Lyme disease each year in America. Worldwide it’s much higher. That's pretty significant. 

So now with more recognition, there are the folks wearing green ribbons for Lyme awareness, there are people marching on Washington and Capitol Hill, and lobbyists trying to fix the wrongs that have been for so long with regards to diagnosis and treatment of Lyme disease. There's not even an ICD-10 code, which is a coding system we use to record a diagnosis for submitting claims to insurance companies. There's not even one for chronic Lyme disease. It's really quite a shame. And a lot of people have suffered for protracted periods of time. 

But with all this Lyme awareness, the floodgates have opened, and it's less politicized. The medical boards historically have gone after doctors who have practised on the fringe if you will, and taken on these patients, and have been reprimanded by medical boards. It still happens a little bit, but that's going away too. So now doctors are less fearful of losing their license and are able to treat and practice and take care of Lyme patients.

So to answer your question, hundreds and probably if it's exponential now. Three years ago, I'd get one or two patients a month. This week I've made three diagnoses of new cases of Lyme just this week. 

Linda Elsegood: Goodness. I know it's very tricky to get diagnosed. There are people that are telling us regularly. We have many, many, many members with Lyme disease, but they had such a hard time getting the diagnosis. If anyone is listening and they suspect they've got Lyme disease, how do they get a diagnosis? Who do they go to? Who do they turn to? 

Dr Yusuf Saleeby: Some resources, at least in the United States, and I know internationally, there are other resources, but in the United States, one of the premier organizations that advocates for Lyme awareness and also does some training to train doctors to be what they refer to with LLMD, which means Lyme literate medical doctors, doctors who are familiar with the caveats and the intricacies and the limitations of our testing. And can actually make a correct diagnosis. And then after that, correctly treat people, to put them in remission. I don't know that you can actually say there's a cure for Lyme disease if it's caught in the chronic stages, but you can certainly put it in remission so that people can regain a fairly normal life.

There are some that have flare-ups from time to time. So the organization that offers a lot of information and good information that's evidence-based and that's reputable, is an organization called ILADS. ILADS.org would be the website. And if you go to that website, there are the sections for some videos for patients to watch and there are videos by Dr Horowitz, a prominent doctor in the field of Lyme treatment. There's also a video by dr. Shor, who's the new incoming president of the organization. And there are some other video documentaries. Under Our Skin is a documentary that was filmed about 10 or 12 years ago. And that's a very good immersion for the average person to get a little exposure to what is involved with Lyme disease.

Linda Elsegood: How do you go about diagnosing somebody with Lyme disease? 

Dr Yusuf Saleeby: Well, it's a little tricky. There are no good direct tests for Lyme. It's difficult or impossible to culture out. So historically the Center for Disease Control has set up a one-two punch, if you will, on diagnosing. They used the Elisa test followed by a confirmatory Western Blot for a line for borrelia. However, that works great for the diagnosis and confirmation of HIV infections, but really falters when we talk about hunting down and detecting the spirochete that causes Lyme disease. The Elisa I don't even do in my practice. It is a worthless test. The Western Blot can miss up to 50 or 52% of positive cases. So we rely on other more sophisticated Western Blot technology tests that look at different bands in different species, not just one single species of borrelia. It's estimated there are about a hundred. 

And then there are other surrogate markers that we look at. Usually, if it's a chronic case of Lyme, people have immune dysfunction or a weakened immune system, and we can look at a particular type of T-cell or lymphocyte called a CD57. The CD57 test is a marker for the health and wellbeing of your T lymphocyte cells, and I use that in my practice to kind of help make the diagnosis, along with monitoring the therapy. So every three months or so we'll draw another, and hopefully, we see that number rising. The normal range is between 30 and about 300 for most reference labs. And I have seen patients coming in with numbers well under a 60. This week I had a patient with a level of 19 who was severely impaired and debilitated. So that is one tool we use. 

There is a relatively new test, that's a direct test called the Nanotrap LA - LA for line antigen. That's a direct test. In other words, it measures directly the antigens, which is independent of your body's ability to produce antibodies, which is where the Western blot falls short. So the Nanotrap LA iS a relatively new test, and it takes two large samples of urine to run. And I've had some success with ironing out a diagnosis based on this new test. 

I also use the Horwitz questionnaire. Dr Horowitz developed a fairly lengthy questionnaire that is a good diagnostic tool. An analogy would be the diagnosis of a headache. So you can have a normal spinal tap. You can have a normal CT or MRI, but a person still has a headache, even though there's no physical finding or test other than their subjective complaint. So in a way, a diagnosis of Lyme disease can sometimes be a kind of a subjective clinical diagnosis that confounds the testing for it. So the Horwitz questionnaire is something I use in my clinic all the time, along with some symptom scores, like the SSS-8 symptom questionnaire, and the FACIT questionnaire, which is for fatigue. So it gives me a way to quantify and put a number on their complaints. Instead of somebody saying they’re just tired or fatigued, I can put a number and then watch that number improve or not based on our therapies.

Linda Elsegood: How does one catch Lyme disease? 

Dr Yusuf Saleeby: Well, historically Lyme, of course, was named after the town in Connecticut where it was supposedly first discovered by a concerned mother who prompted the local health department to get the CDC to come up and figure out what was making all the kids in the neighbourhood sick. So it was named after the town. It was associated with a deer kick. We know now that there are other ways besides getting bitten by a deer tick that can transmit Lyme. There are researchers in Europe, the Netherlands in particular, who believe that the flea and the mosquito might also transmit Lyme.

And there are co-infections too, like the Babesia, Bartonella, Ehrlichia - there are about a dozen or so other co-infections that the tick can actually carry, so one bite from a tick can actually infect people with more than just one infectious organism. 

The other ways you can get Lyme is congenitally through the placenta. We do know, and it's been confirmed, that Lyme disease can cross the placenta and you get a newborn who can have Lyme disease because mother had it. And also we're finding out that very likely it is sexually transmitted. So you have partners who are sexually active who can actually transmit that spirochete from one to the other.

Again, there's a lot of research going on, mostly in Europe. Our research dollar is not very strong here in the United States because of the politics behind the diagnosis of chronic Lyme disease. And that's very unfortunate. So the researchers in Germany and the Netherlands have sort of taken it to the forefront of a lot of really good research.  

Linda Elsegood: Well, we will just have a quick break, and then we'll come back, and we'll discuss this further. To listen to individual radio shows and interviews, go to www.Mixcloud.com/LDNRT. Today's show sponsor is CareFirst Speciality Pharmacy. They are leading compounders of LDN and other custom treatments, servicing patients in over 18 states, coast to coast. They're widely accredited to provide you with the highest quality demanded by the industry, and the expert service you expect. To learn more, call (844) 822-7379, or visit www.cfspharmacy.pharmacy. Thank you. 

Welcome back. It's very interesting talking about Lyme disease, and I know many people will find this very interesting. You talked about it being sexually transmitted. If you think that you've caught Lyme disease from your partner, what is the first thing you should do? 

Dr Yusuf Saleeby: Well, first of all, Lyme disease infection is the chameleon of infectious diseases. In the 17th, 18th century it may have been syphilis - in other words, it had different manifestations. And then I think the baton was probably passed to HIV.

So with HIV/AIDS patients, you had a plethora of symptomatology and presentations. And I would say today that baton has again been passed to Lyme disease. So Lyme disease can affect many, many things. It can affect the skin; you have dermatological manifestations. It can affect the heart - I actually lost a patient in the ER about 15 years ago, and that's what really sparked my interest in Lyme disease. She had a bullseye lesion, and she had complete heart block and died two days after she presented to the emergency room. I always remember that case in particular. The other manifestations are neuropsychiatric, and that's a big one because a lot of people when they get infected with the Borrelia species, will instantly have that organism burrow into their neural tissue, so they present with things like MS - Multiple Sclerosis, with plaquing around their brains and spinal cord. They will present with ALS type symptoms or Parkinson like symptoms or severe depression or bipolar or even schizophrenia. And unfortunately, years can go by before the correct diagnosis is made, and these poor souls will get put on all kinds of psychotropic medications, which often don't work.

They kind of maybe mask the symptoms, or are very minimally effective until such time as they're diagnosed with Lyme; and then the appropriate therapies are rendered and then their situation improves, the plaques go away. So their MS improves and their gait comes back, or their vision comes back. They stop acting crazy. The schizophrenia seems to just melt away, and they come off of their typical poly-pharmacy where they present on multiple medications - that can go away too. Once we get their Lyme disease in remission their symptoms clear up, we can pull them off of all their antipsychotic medication and antidepressants. So when one suspects it based on a plethora of weird symptoms that haven't been diagnosed, where conventional doctors can't come up with a reason for it, it's time to get checked out.

Linda Elsegood: I know after speaking to many patients with Lyme disease, there seems to be a wide range of treatments available. What do you normally have as a protocol, or does it vary from patient to patient? 

Dr Yusuf Saleeby: Well, I believe in very personalized healthcare. So almost every one of my Lyme patients doesn't get a cookie-cutter sort of prescription. I do align myself with the ILADS protocols and some that have been developed by Dr Horowitz and others, although I also embrace some protocols developed by Dr Cowden and Dr Buner, which utilize less of high potency antibiotics, synthetics, and more into some natural anti-microbial and immune-enhancing herbals and supplements.

And that's the big thing - immune enhancement. So all the heavy lifting that the body does to fight an infection, whether it's Lyme disease or anything else, is done by our immune system, our innate and humoral immune system. 90% of it is done by a healthy immune system. The additional five or 10% can be done and accomplished by antibiotics or herbals.

So my sort of philosophy as a functional medicine doctor is to get the immune system back in its optimum health so that it can be healthy enough to fight off and suppress the Borrelia microbes. That is not necessarily the philosophy of conventional doctors who like to blast away with high doses of antibiotics for protracted periods of time, leading to other issues like dysbiosis and overgrowth in the gut microbiome and things like that.

So LDN has found its way into my practice as an adjunct therapy for many of my Lyme patients, because I know it bolsters the immune system. I don't know how many of the people listening today know what and how LDN works, but obviously this drug has been around since 1963, I believe it was created, and FDA approved since the mid-1980s. And this compound binds to certain opiate receptors, the mu kappa and delta. Receptors. But it's the mu receptors where its usefulness was first recognized in treating people with opiate addictions, and then later alcoholism. But I guess doctors were finding people returning to their clinics for refills on this higher dose of naltrexone that had some of their symptoms and signs of other chronic illnesses dissipate or disappear. And so there were some researchers like Dr Bernard Bihari who noticed this and some researchers in Europe who said, well, let's look at lower doses because what lower doses of naltrexone do is they actually can upregulate certain opioid receptors. So there's this something called opiate growth factor and opiate growth factor receptor, which when upregulated actually has a very positive effect on the immune system on what they call T helper cells - Th1 which is your cells that actually gobble up bad bacteria and viruses. And then also has an effect on the Th2 cells, which are the ones that produce antibodies. So I'm using LDN aggressively in my Lyme patients who show up with the CD57, which is a surrogate marker for the health of their B cells or their antibody-producing cells.

And I'm using the LDN in conjunction with other therapies, to enhance it. I'm finding on a regular basis people who come in with subtherapeutic CD57 counts are returning to my clinic, even in one to three months, with a marked improvement. And then, of course, that correlates with a marked improvement in their overall health because now their immune system is healthy. Their Th1 and Th2 cells are reactivated. They're healthy, they're more focused and directing the battle against these invading spirochetes, these microbes, and there's less need for the use of really high doses and protracted courses of antibiotics, 

Linda Elsegood: Having fewer antibiotics has got to be good, hasn't it? I wonder if I could just ask you to answer a few questions and then we'll come back to Lyme disease. We have a question from Kim, and she says, does LDN directly or indirectly affect dopamine levels? I know it increases endorphins. 

Dr Yusuf Saleeby: Right. So Kim, yes the LDN can enhance dopamine. It does enhance endorphins and enkephalins just because of the nature of how it works on certain receptors. I think I previously mentioned OGF are receptors on the surface of cells, and that can actually lead to enhancement of the cells to fight off cancer, especially on the lymphocytes, on the immune system cells. But LDN actually plays a pretty big role in something called PONC, which stands for pro-opiomelanocortin. That's a mouthful. It's actually a big fat protein, a precursor to ACTH, which stimulates the adrenal glands. So you get your DHEA and cortisol amongst others. And also POMC is a precursor to the endorphins and enkephalins. So when you stimulate that system with LDN it binds and has a very positive effect on the release and production of endorphins and enkephalins, and also on the HPA axis, which encompasses your adrenal glands and also some neurotransmitters in the brain and even in the gut.

Linda Elsegood: That's a really good answer. Thank you. So thank you for your question there, Kim. We have another question here from Donna. She says, “I'm a CRPS patient with autoimmune disease, mixed connective tissue disease. I've been in remission. CRPS is extremely painful, and I started at 1.5 LDN two months ago. I've been at 4.5 for a month. I was taking it at midday. Dr Bihari said to take it at night, and so far it hasn't worked. My pain management doctor thinks it's a wonder drug. Do you have any suggestions?” 

Dr Yusuf Saleeby: Well, you know, in all, honestly, there's no magic bullet. There's no panacea for everything. I've seen LDN work very, very nicely and very well for folks. And then there are some people who don't tolerate it very well. Sometimes in dosing, I am very conservative, and my protocol is to start out low and go slow. I sometimes start out with one or two milligrams and then slowly, every month titrate up, and sometimes cap at around four and a half milligrams, although I do find that sometimes a lower dose actually works better than a higher dose of. For instance, I had a patient that did marvellously at two, and then as we started to escalate the dose, we hit three, three and a half, four. She didn't do so well so we backed down to two, and she did fine.

With Hashimoto's patients, I found that starting even lower is better, at maybe a half a milligram. I've had some mixed feelings about LDNs place with Hashimoto's in that I've seen PPO titers actually climb once people have been on it. 

But I think there are other factors involved. Some of it is genomics. There is a genetic mutation or variant of a particular gene that actually enhances the ability of this drug to work on people. So what I'm going to be doing in my practice is checking people's genomic profiles for their ability to tolerate naltrexone, and also if it's an effective therapy. So sometimes we can not just do trial and error on a patient, but actually look at their genomic profile and predict whether naltrexone is going to work better for you.

I have had complaints of things like headache, insomnia, feeling wired up, some nausea, and on occasion, some Herxheimer reactions, what some would call a healing crisis. A Herxheimer reaction is when there's a big die-off of Lyme bugs, people get feverish, chills, achy, and that's called a Herxheimer reaction. So, occasionally we have some of that going on when we have folks on LDN, and it's just a matter of titrating the dose up or down or sometimes discontinuing it for a while and making sure that it's not some other factor that's getting in the way and kind of falsely blaming LDN.

Linda Elsegood: Okay. I hope that answers Donna’s question. Then we have another one which fits in nicely with what you were saying. I don't know who it is, but they said, “I've been told by my doctor today that I'm now hypothyroid. I had a blood test yesterday. The last blood test in November 2016 showed that I was borderline as other tests done earlier in 2016. I've been taking 1.5 of LDN since April and had expected my thyroid levels to improve, but the opposite seems to happen. Do you have any idea why?”

Dr Yusuf Saleeby: Well, I have one question for clarification. Are they saying they are hyper or hypo?

Linda Elsegood: Hypothyroid. 

Dr Yusuf Saleeby:  So first of all, there may be other factors. One, we have to establish that they may have an autoimmune disorder, like Hashimoto's. So along with their thyroid function tests, they would need to determine their TPL, their thyroid peroxidase titers, and the thyroglobulin antibody titers. And if it's a hyper going to hypo like Graves' disease - you can cross over from hyper to hypo - the TSI test, the thyroid-stimulating immunoglobulins - might be helpful. So we have to quantify the type of thyroid disorder that patient has and not just throw LDN discriminately at them because there may be other things in place. There could be a selenium deficiency, an iodine deficiency, there could be a conversion problem where people are not converting the T-4 thyroid hormone to the T-3 active. They may be converting to their lazy brother if you will call the reverse T three. I used the analogy of their “lazy brother “ if you will, that sits at the dining room table, eats all the food and doesn't do the dishes. It's not something you want to have a lot of around, so one has to check for that because if they're feeling worse, subjectively, that must mean that there's something going on with their thyroid that maybe the LDN is not addressing. So if it's a Graves' disease or Hashimoto's thing, you would tend to think that the LDN would have a big part to play in that. But if it's another issue, there may be other therapies. 

It could be what type of thyroid replacement therapy you're on. If we're using Armour that might be a problem. If we're using Synthroid, which is T-4 only, that patient could actually be converting too much of the T-4 to reverse T-3, instead of T3. It could be a methylation problem, so methylation pathway analysis, looking at their genomics, looking at methylation testing panels to see where they're metabolizing things. Maybe the introduction of select adaptogen herbs can help with T-4 to T-3 conversion, and blocking down things like reverse T-3. Also, deficiencies and some of the B vitamins and also vitamin D. Vitamin D deficiency can lead to a problem with conversion and reverse T-3 being escalated or high.

So just because the LDN is not working, it could be that it's possibly the wrong therapy for you. Or again there could be many issues that need to be investigated. 

Linda Elsegood: Thank you. And the next question runs into the last really. Dana sent this question in and the question says, “I was diagnosed with Hashimoto's and AE. I was taking Synthroid for seven and a half years. And the current dose was 112 micrograms In March last year, I was diagnosed with AE, and I started the IV steroid protocol, which is very effective. I didn't believe the diagnosis and didn't think steroids were the best course of treatment. I saw a functional medicine doctor who ran tests and couldn't find any other cause for my symptoms. He prescribed LDN, but I didn't start it. The main reason was that the steroids really work to stop the symptoms I was having. My husband was concerned for me to try anything else as everything read suggested that untreated AE could result in seizures, coma, or death. I went to the Mayo clinic last year. The diagnosis was confirmed, and IV steroid treatment protocol was prescribed. It was very effective and mostly eliminated all of my symptoms. She's been taking a thousand milligrams of Solu-Medrol every three weeks, reducing every four weeks. The treatment will stop in mid-June. Steroids have cut my thyroid antibodies in half. And the last time I went to see the endocrinologist, I told him I felt my thyroid was becoming overactive and suggested that my Synthroid be reduced. He said the numbers looked good and he wasn't alarmed. It was possible the symptoms I was having were side effects from steroids: heart palpitations, sweating and sleep disorders. I started reading on LDN and see that many people are able to get completely off Synthroid after starting LDN. My question is, should I wait for the steroid treatment to be over before starting LDN? I stopped taking Synthroid last week because my heart rate was getting a hundred some days, and it would skyrocket with any activity at all. Normal for me is 55. The script I have is 1.5 milligrams, and I've read that people with Hashimoto’s should start very slow, very low. Any directions you could provide would be appreciated.”

Dr Yusuf Saleeby: That was quite a question. So a couple of things to address, first of all, steroid therapy. The Solu-Medrol, which is a potent corticosteroid, is downstream treatment. In other words, it is treating the symptoms of the underlying cause of the autoimmune disease and the other issues she has, and yes, while it is effective - we do use steroids in short bursts for symptom relief - you are not really addressing the underlying cause. There's no way to ever reverse what's going on with steroid therapy. It'll basically mask symptoms. It's like a paint job on a rusted car. You're still going to have rust underneath the paint unless you do do a full rehabilitation of a car. So by just masking it over, just by slapping paint over the top, it might look shiny and bright for a while, but it still has rust underneath. 

A same analogy for upstream. You have to use a functional medicine doctor to make a diagnosis of an upstream root cause reason for your symptoms or your disorders. I don't really care what you call it. You can call it lupus. You can call it MS. You can call it ALS. You can call it Hashimoto's. Essentially from a functional medicine perspective, autoimmune diseases are the same downstream. They may just affect different body organs or systems, but the root cause can be just a handful of things that can trigger this. An infectious disease, genetics, heavy metals,  overgrowth or dysbiosis of the gut microbiome.

So some very rudimentary, very basic things can actually trigger off the cascade that winds up as an autoimmune disease of different natures, of different flavours, if you will. So the steroid therapy is basically masking your symptoms. Yeah, you're going to feel better, but it can also lead to euphoria. It can lead to bone loss. It can lead to thin skin Cushingoid like fat retention and certainly you don't want it. And there are some very detrimental side effects from long-term steroid therapy. So is my advice to my patients to try to limit the amount and length of time they're on steroids and really find the root cause and address root cause issues for your autoimmune disorders and never try to let it go so long that it really becomes a debilitating disorder. 

So hopefully that answered some questions. There was a lot to that question, but I think she would be very well served by having a functional medicine doctor to look at her, and analyze her for antecedents, mediators, and triggers, uh, through what we call the timeline and the matrix, which tools we use in functional medicine to help our patients.

Linda Elsegood: Thank you. We'll just have a quick break, and then we'll come back with some Lyme disease questions for you. Thank you. The LDN Research Trust has an LDN Vimeo channel. I have interviewed over 550 LDN prescribers, researchers, pharmacists, and patients from around the world. For many conditions, you can find the link from the LDN Research Trust website. If you'd like to be interviewed, sharing your experience, please Contact Us. I look forward to hearing from you.

Today's show sponsor is CareFirst Speciality Pharmacy. They are leading compounders of LDN and other custom treatments, servicing patients in over 18 states, coast to coast. They're widely accredited to provide you with the highest quality demanded by the industry, and the expert service you expect. To learn more, call (844) 822-7379, or visit www.cfspharmacy.pharmacy. 

Welcome back. We have a question from Chris, and he says he has Lyme disease and co-infections and does LDN work from 0.5 to 5 milligrams a day with Suboxone? He takes that at four milligrams a day. 

Dr Yusuf Saleeby: So he's on Suboxone as well as the LDN? I have very little, um, experience with the concomitant use of naltrexone and Suboxone. The mechanism of action is slightly different when we're dealing with opiate addiction. We're looking at a blockade of the mu and kappa receptors, and maybe to a lesser extent, the delta-opioid receptors. But when we talk about the use of LDN to treat Lyme disease, we don't want any interruptions or anything in the background to impede its ability to work. And it does work differently. Again, the lower dose works much more effectively on the OR receptors and what they call the toll-like receptors or TLR4s, in exacting their effect on the immune system. 

I don't have any patients in my practice that are on Suboxone. I usually wash out those kinds of drugs at the onset when I see folks. I try to take them off as many of the toxic drugs. I have very, very few patients who are taking any type of opiate, centrally acting medications. We get them off that fairly emergently so that we can open up the field of our herbals and some of our selected shortlist of good meds, if you will, to help them with their conditions. So I'm sorry, I don't really have a good answer about the interactions between Suboxone and LDN. 

Linda Elsegood: Okay. That was still a good answer. And we have a question from Kathy, who has got Lyme disease co-infections and chronic fatigue. Now she's rather concerned. She's going to go and have some allergy testing, and for food allergies as well. And she says, should she stop LDM prior to the testing? She says I ask because since taking LDN, her allergy reactions and sensitivity to food has much reduced. She's very glad about that, but she doesn't want it to affect the testing she's about to have. She wants it to be accurate. What should she do?

Dr Yusuf Saleeby: Oh, it sounds like she is looking for a big reaction for the food allergies. If she's looking to get the maximum reaction and she's found through her personal experience that while on LDN it has suppressed her allergic reaction to foods, that's probably by a mechanism of LDNs effect on the and also the Th2 and also the Th17, which has to do with allergy and autoimmune.

So if she stops the LDN and waits for a washout period, she could pretty much realize a stronger reaction to the food testing or the skin prick testing, if they're doing topical testing for allergies for pollen and environmental allergens. But what's the point? Is she trying to look for a bigger reaction, or is she trying to take something to help with her symptoms? So if she's trying to figure out what maybe are the offending foods or environmental allergens, yes, stop it for a bit to see if it would cause a more severe reaction. But again, she's throwing her Th2 or Th17, the T helper cells into chaos again. Because obviously there's something going on that's causing her to have these environmental allergens, whether it's the methylation problem, a vitamin deficiency, toxic heavy metal, an infectious organism, a smouldering infection causing her to be hyperactive. It could be her gut microbiome. She could have an obliterated crazy,  unbalanced gut microbiome that needs to be put in balance to avoid leaky gut and gastric permeability, which can lead to food allergies. So skin testing is a way to determine some of these things.

In my practice I don't do so much of the testing like IgG testing or skin testing for allergies, as I do more of an elimination diet. It's a less expensive, more comfortable way, in my opinion, to do things. And you can isolate certain foods that are problematic and eliminate them, try to eliminate them for a period of time where the antibody titers diminish, and you don't mount a response to these foods any longer. It's you sort of becoming desensitized if you will, to it. And when you are exposed to these antigens again, they don't necessarily cause the same kind of chaos or reaction. 

Linda Elsegood: One last question. Jack says that he's taking LDN and high doses of vitamin D and his question is, does LDN change the laboratory results of PTH in any way?

Dr Yusuf Saleeby: Parathyroid hormone, PTH? 

Linda Elsegood: He doesn't say what PTH stands for. 

Dr Yusuf Saleeby: Well, I'm going to assume that it's parathyroid hormone since he was talking about vitamin D and how high doses of vitamin D can certainly affect parathyroid hormone. I haven't had any issues with high doses of D affecting PTH or bone turnover markers for that matter. In my practice I check parathyroid hormone, calcium levels, and things like osteocalcin and Beta-Cross Laps, which is a CTx, a C telopeptide, which is a bone turnover marker, to assess if the thyroid therapy is appropriate. In other words, we don't want to overprescribe thyroid medicine because it can cause osteoporosis and it affects the bone turnover markers. Likewise too low thyroid can also, so you have to have the right amount. It's kind of the Goldielocks principle, where too much or too little can have detrimental effects. But I have not experienced in my practice, nor do I know anything in the literature necessarily, that LDN can affect the parathyroid hormone levels.

Linda Elsegood: That's very good, thank you. So people now know who you are, what you do, and where you operate from. How do they contact you? 

Dr Yusuf Saleeby: Well, we make it pretty easy. We have a very interactive, information-filled website. Our URL is carolinaholisticmedicine.com. So that would be one of the first, exposures. We're getting a lot of folks coming through IFM, the Institute for Functional Medicine website, ifm.org; and there's a physician finder. If they're in the area of the Carolinas or Georgia, they'll find me. ILADS also has a physician finder. So ILADS.org for anyone with Lyme disease should visit that website and they can send you to your closest Lyme doctor.

Then we have a toll free number in the United States. It's (800) 965-8482, and that again is on our website. For those calling from overseas, we do some consultation work for people outside of our region, and that number would be 843-651-9944. But the best way to get ahold of us is via our web presence, our carolinaholisticmedicine.com website.

Linda Elsegood:  That's interesting. My geography is getting better - you are on the east coast. If somebody on the west coast wanted to see you, would you do a Skype consultation, that kind of thing, if they couldn't travel to see you?

Dr Yusuf Saleeby: The laws in the United States are very different from state to state. Some have frowned upon telehealth outside of the state in which you're licensed. And we adhere to strict compliance with those laws in South Carolina and North Carolina and other states, too. Very often people come in for an initial visit, face to face with one of our providers, at our three different locations. Once that physical contact has been made, we can then comfortably meet the criteria of taking care of patients by the standard of care, at least having met them and examined them. We can do that via Skype. We use Zoom Meeting or Go To Meetings where we can screen share. So a lot of the followup is done even within our state and state of South Carolina. There are people that travel four hours to see me, and after their first encounter, we can sometimes do followups via telehealth.

There are people that come in from Buffalo, New York, from Fort Myers, Florida, that drive eight hours to come up to our office and see us. Once they make that initial contact, then we are okay. Some folks have done consultations for folks overseas, and one in particular in Brazil. We did this via telephone, and it was as a consultant only; I was not a prescribing doctor. I was only giving a second opinion on some things. The rule is at least a one-time physical encounter is required to proceed as an active patient 

Linda Elsegood: And at your practices, do you have a waiting list or can people get an appointment quite quickly with you?

Dr Yusuf Saleeby: We've built our infrastructure up pretty rapidly. I'm not the sole provider. I have a staff of highly trained - by me, and also focused on especially thyroid and now starting with Lyme - mid-level providers, a naturopathic doctor. So there's a group of us. We take a team approach. We're also bringing in health coaches to help people with remaining compliant and adherent to our programs and protocols. So to answer your question, we have positioned ourselves with keeping our infrastructure up and our staffing with very highly trained advanced providers and doctors so that there's not a huge waiting list. I know there's some practices that have a two-year waiting list and that's not us. We get people in pretty quickly. 

Linda Elsegood: Well, that's reassuring to know. Well, it's been an absolute joy to speak to you. I'm sure everybody has learned so much. I know I have, and it's really a shame that so many people are getting Lyme disease and the way it's spreading. But with more and more doctors like yourself who are helping people to find out they've got Lyme disease, and to help start treating them, surely has to be the way to go. 

Dr Yusuf Saleeby: Well, Linda, it was a pleasure speaking with you tonight, and yes, I think allied advocacy groups are making great strides and gaining ground on a lot of disinformation. And I think we see the politicization of Lyme disease kind of slowly melting away. And hopefully, the result will be more people getting this diagnosis and therapies they need, so they don't have to suffer. 

Linda Elsegood: And you've seen that starting to change already. Have you. 

Dr Yusuf Saleeby: I have, yes, I've felt it in my neck of the woods. And I know that on a national scale that's happening. There's much more awareness. It only takes a couple of celebrities to contract Lyme and write books about it to push it to the forefront of people's consciousness. 

Linda Elsegood: Indeed. And that's sad, isn't it? But a famous face really helps. Doesn't it?

Dr Yusuf Saleeby: Yeah. 

Linda Elsegood: Okay. Well, thank you very much, and we'll have to invite you back another time. 

Dr Yusuf Saleeby: My pleasure. Thank you. Bye. Bye.

 

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

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.

Susan - US: Celiac Disease, 18 Sept 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

After Susan’s surgery in 1999, she had certain symptoms from her Celiac disease; including diarrhea, weakness and severe stomach ache and from there found the Low Dose Naltrexone (LDN) charity website for the Low Dose Naltrexone medication. Her doctors agreed for Susan to try it. Having no initial side effects, and even after 18 months she is doing fantastic. Now Susan is 73 years old, she quotes that she is “Going to take it for the rest of her life.” As well as being so thrilled for the Low Dose Naltrexone medication to work for her.

Susan rated her quality of life before the Low Dose Naltrexone (LDN) was a 3 out of 10, and it has now significantly improved since then.

She recommends LDN for all, but advises people to be allergy tested beforehand to double check with what is in the medication.

Please watch the video to hear the full interview. Thank you.

Any questions or comments you may have, please Contact Us.

Sue - Wales: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sue from Wales first experienced symptoms seven years ago when she realised that she couldn’t grip things properly and she started to drop things a lot. She had strange sensations while walking that she was going to fall. Sue went to the doctors and had blood tests and was told she was fine despite the problems that she was experiencing. A year later, in a new job which was stressful, things accelerated, eight months into the job she had to leave.  Back at the doctors, she was given more tests and this time she was referred to a neurologist who diagnosed Primary Progressive Multiple Sclerosis.

Now choking on her food and having to walk slowly and getting nothing concrete from her doctor or neurologist Sue decided to research for herself. She found articles about Low Dose Naltrexone and found a prescriber and finally got herself a prescription for LDN. 

Starting at a low dose and working up steadily Sue soon found she felt a lot better in herself, happier and better able to cope. She had more energy and got a spring back in her step within a month. The numbness improved and she has her life back without the anxiety and fear for her future that she was feeling before. 

Stephenie - Australia: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Stephanie from Australia takes Low Dose Naltrexone (LDN) for Multiple Sclerosis (MS). Stephanie first started noticing symptoms in the year 1997, she had tingling in her legs, funny feelings in her right hand and little finger, as well as massive fatigue.

After CT scans and tests, nothing showed up, so they offered her physiotherapy. After travelling to Australia, she then noticed numbness in her forehead and heavy feet.

After seeing a new GP, they confirmed it was a relapse remitting MS.

Near this time Stephanie also had optic neuritis on the right eye optic neuritis on the left eye and relapses would hit her legs. 

Stephanie found out about Low Dose Naltrexone (LDN) through a meditation and wellbeing group, she then researched online and found the LDN trust website. Stephanie then went to her GP where her doctor agreed to have it prescribed for her. 

Before LDN, Stephanie rated her quality of life a 4 to a 5 out of 10, and now a 9 out of 10 after trying LDN.

Stephanie recommends people to try out the LDN medication, saying how worthwhile it is. Quoting it as harmless, and gives a really great chance at stopping the disease where it is.

This is a summary to listen to the entire interview by click the video link.

Stephen - US: Reactive Arthritis, Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Steven from the United States takes Low Dose Naltrexone (LDN) for reactive arthritis and fibromyalgia. He first started noticing problems five years ago at 65 years old, and had tremendous body pain, hands and wrists were very swollen.

After researching into LDN, he showed the information to his Rheumatologist who called it “Internet Crap” stating how there is no magic there.

He finally managed to receive a prescription from his primary doctor after some time.

He advises people to try out LDN, as he feels as though many people may be concerned about it. He rated his quality of life, before LDN a 3 ½ out of 10, and now, an 8.

Please watch the video to view the whole interview, Thankyou 

Any questions or comments you may have, please contact us.

Stefan - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Stefan from England was diagnosed with Multiple Sclerosis (MS) in 2004 however had symptoms for around four year prior. He was very active but started to realise that his stamina was reducing, as well as weakness and numbness primarily down the left side of his body. Stefan experienced this on and off alongside, dizziness, where he had a spell of passing out, up until his diagnosis. 

Stefan started taking liquid form Low Dose Naltrexone (LDN), around five weeks ago and has already noticed an improvement in his balance and walking. He is also noticing benefiting differences in the other symptoms too.

This is a summary to listen to the whole Low Dose Naltrexone (LDN) and MS interview please click the video link.