LDN Video Interviews and Presentations

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

Linda Elsegood: Today I'm joined by Dr. John Kim from Georgia Integrative Medicine Clinic in the US. Thank you for joining us today. 

Dr John Kim: Oh, you're welcome. It's my pleasure and honour to share this wonderful therapeutic known as low dose naltrexone. 

Linda Elsegood: Thank you. So could you tell me your qualifications, please? 

Dr John Kim: I am a physician originally trained in family medicine, then Chinese medicine, integrative medicine, preventive medicine, public health. I think before I went to medical school, I was doing basic science research in biochemistry, and I was a Howard Hughes Medical Research Fellow for pharmacology. 

Linda Elsegood: And when did you first hear about LDN? 

Dr John Kim: So this interesting part is that I have gone through two residencies, two fellowships; including an integrative medicine fellowship with Dr Andrew Weil at the University of Arizona. Those times spent in training I'd not heard of LDN. I did not learn about LDN actually until a patient of mine came to me and said, “Hey, listen, I have a thyroid issue, and I've done this research, and I just can't get a doctor to prescribe me LDN or low dose naltrexone. Would you at least do the research for me? Because you're one of the few doctors that listen to patients. And you have an open mind?” So I said, sure, let me do the research. And when I did the research, I was very surprised by the fact that this has been well-documented and utilized extensively since Dr Bihari’s use in New York, and all evidence seems to indicate very little risk and all possibilities of benefits.

So I told the patient, yeah, sure, let me go ahead and I'll prescribe the medication, and it's going to be a bit of an exploration on both parts. And amazing things began to happen. Not only her thyroid issues began to reverse and over several years not only her thyroid issues reversed, but she conceived and delivered a baby.

And so. That person made me think a lot about the possibility of what else is possible with LDN. Me being a cautious practitioner I had to go very slowly for the next about five, six years; and I would target other patients with thyroid conditions. And I began to see a pattern that I can't do with other medications. Because with all the medications in conventional medicine, we can replace thyroid hormone in different forms, but I don't have a possibility or ability to reverse illness, reverse thyroid disease. We just let it go until it goes into total failure, and you just up the dose. And in this case with LDN, I began to see patients whose doses can be halved, and other patients would basically become drug-free. And then other cases I would see the antibodies related to hypothyroidism lowered in number.

Linda Elsegood: And did any of your patient's experience negative side effects when first starting LDN?

Dr John Kim: In the beginning, none of the people really experienced any of the side effects, but as I began to use LDN more in-depth, I began to see side effects. One of the things I've run into is that typically the LDN low dose naltrexone in the literature is considered between 1.5 and 4.5. But I've noticed that in patients with what I call low endorphin reserve, where a patient has been sick for a long time, patients not feeling well for a long time, their daily activity is compromised; in those patients, I've seen that the 1.5 milligrams can have a paradoxical effect. Patients can not sleep. You tend to create insomnia. And I think that's well documented. In patients with PTSD, the LDN also can cause vivid dreams related to the PTSD; or further, create trauma. And in such cases, I began to experiment with lower doses. So I would begin using 0.5 milligrams or even lower. Now today I start even at 20 micro micrograms, and then I'll do a rapid ramp to get them to 1.5 milligrams. 

Other side effects that I've seen is some nausea. I have patients that could not even tolerate one microgram of low dose naltrexone; they just feel really, really bad and in pain. So again, I think that their endorphin reserve is quite low and they’re not tolerating this dose. 

Linda Elsegood: And you were talking about thyroid conditions. Have you prescribed for other autoimmune conditions now? 

Dr John Kim: Yes. Oh, you know, it's thyroid Hashimoto's thyroiditis. One of the first things that I started treating when I saw the effectiveness of LDN for treating thyroid conditions - I said, Hey, if it works for Hashimoto's thyroiditis and the mechanism is through correction or modulation of our immune system, why not? Why wouldn't it be a shift in theory, work for Graves’ disease? So I began to treat patients with Graves’ disease.

Graves' disease is very interesting because the response to LDN in Graves' disease is maybe somewhat lower than with Hashimoto's thyroiditis. I have several patients who are doing very well, and they are in remission from Graves' disease with using nothing more than low dose naltrexone.

As I can understand the mechanism by which LDN works I decided that maybe we can do more. Again, the literature also helps us. So I began to treat patients with MS and we just got some amazing results, including one patient who is actually in remission from MS. She almost was not able to walk, and now she's climbing Mount Kilimanjaro and travelling all over the world and being able to enjoy a very high quality of life. And then other rheumatological conditions, such as psoriatic arthritis and many, many other conditions. 

One thing that I really noticed is that through my practice I'm beginning to see LDN beyond just what we accept in literature. For example, I have some patients with dementia and Parkinson's disease and LDN I believe has helped to mitigate or slow down, or some cases reverse - not fully - but some effects of dementia and Parkinson's disease.

Linda Elsegood: What about cancer?

Dr John Kim: Cancer is one area that I think - I recently accepted a position with Miami Cancer Institute with the Baptist Health of South Florida, and the reason for that is that in my current private practice, I think that my experience with autoimmune diseases have been extensive and I've seen excellent results with low dose naltrexone for treating autoimmune conditions. But for cancer, to be honest, I just don't have enough patients coming to me who have cancer, and the patients that I've treated with cancer, I am not able to say that it works or doesn't work with cancer.  What I have seen is studies, especially by Dr. Berkson in New Mexico, who is combining the low dose naltrexone and alpha-lipoic acid. So I began doing that as generally part of my treatment of cancer, but I'm looking forward to my new position where I will be able to see more of those patients.

Right now, I have developed a bit of reputation to help patients with autoimmune conditions. I see a lot of patients with autoimmune and different kinds of autoimmune conditions, and that has really helped me to understand the function and utility of LDN for autoimmune diseases. So what's interesting to me is all the cases where I am using LDN may be somewhat different from other people. One of the things that I've utilized LDN for is the gene for insomnia because one of the things that LDN does is to increase REM sleep, decrease sleep disruption; and also enhances people’s ability to fall asleep. And that's one of the reasons I think, unfortunately for the patients with PTSD, that doesn't work as well, because these may get them back to the conditions or memories that are very traumatic because it's very, very vivid. 

The other things that I’m treating are things like tinnitus, migraine, endometriosis, and infertility. What I'm seeing is that LDN has multiple chemical functions. So one is, its modulation of proinflammatory cytokines through the clear cell in the central nervous system. And that's the primary response to invaders if you will, in our central nervous system. And as such LDN is a very valuable tool. 

But in addition, it seems like LDN has other functions, such as it seems to have a very calming effect on the nerves. So LDN can be, I think, used very effectively for treating neuropathies of all different kinds. Also, as I mentioned earlier, it's almost like an adaptogen all by itself, so I often use LDN to treat patients with a mood disorder because having more endorphins seem to make patients respond better to the conventional and nonconventional treatments of depression and anxiety. Because it's kind of hard to feel depressed when you're feeling good, and endorphins give you that edge that feels good. So while you feel good, it's difficult for you to feel either anxious, or feel good and depressed at the same time. 

Linda Elsegood: What do you do with patients that are already on strong opiate painkillers when they come to you? 

Dr John Kim: So those patients are very interesting. About 50% of my practice is treating patients with severe pain using neuro-anatomic techniques, and I don't prescribe any narcotics at all. But we have a good track record of helping patients to get off narcotics, and in this case, we use a phenomenon of low dose naltrexone, utilizing microdose naltrexone, also known as ultra-ultra-low dose naltrexone. And in this case, we use micrograms of naltrexone. Again, as I said, the usual dose that people use of naltrexone is about 1.5 milligram to 4.5 in LDN amounts. But it's very interesting because you can take microgram doses, which is a thousand times less than milligram doses, and there are studies that demonstrate that a microdose of naltrexone results in better pain relief, and it also lessens the side effect.  I have a couple of patients treated with this ultra-low dose of naltrexone, and they’re doing great. Great, great, great response. Because I have chosen not to prescribe for narcotic, they still go to their pain doctor, and the pain doctors are quite pleased because usually if you just give narcotics alone, the doses have to go up, up, up, up, up, and that's when you have overdose phenomena and people get in trouble. But in this case, what happens is that with the combination of the low dose naltrexone and the neuro-anatomic approach to pain that I developed over 20 years, we can actually reeducate their central nervous system and lower the dose of narcotic, while the patient is reporting much-improved pain. Such techniques, actually, I think to warrant a lot of research oncoming because of the obvious problem with the narcotic overdose that is going on in our country. As a matter of fact, there's medication right now that is being studied combining ultra-low-dose naltrexone and narcotic medication. It's not been approved yet, but there'll be interesting how the Oxytrex will work for patients. 

Linda Elsegood: Do you keep them on the ultra-low dose, or do you increase it over time? 

Dr John Kim: As their narcotics amount goes down, then I march it up because, with low dose naltrexone, I think that there is a benefit. I think the key is to start the patients depending on their narcotic history and narcotic use history and their functional assessment of the endorphin reserve status, and then trying to match that clinically. And then generally I march them up. LDN really has been an invaluable partner for me to get my patients well, 

Linda Elsegood: You also mentioned alpha-lipoic acid. What do you use as a protocol? Do you have a general protocol for it?

Dr John Kim: Absolutely. Dr Berkson's protocol of using LDN and alpha-lipoic acid is published; anyone can look it up. I believe that he uses IV though, so I researched more talking to pharmacists, and it seems like that protocol has a side effect that people can pass out. Also, if the GI system is working, I feel like that is the first thing that we should do.

So with alpha-lipoic acid, I generally like to utilize the controlled release form or slow-release form, and that also depends on the person's ability to take alpha-lipoic acid, because if you give 600 milligrams to everybody, some people who are very sensitive to it may pass out or get hypoglycemic symptoms because alpha-lipoic acid can be a powerful agent to lower blood sugar levels in diabetic patients. It also helps with neuropathy. I know that alpha-lipoic acid and LDN are a very powerful combination to reduce inflammation in the nerves. 

And that makes it interesting because most of the medications that we use do not necessarily work well in what we call a high-hydrophilic or -hydrophobic environment. A hydrophobic environment means that it's not easy for charged molecules to enter and do its job. LDN seems like it can penetrate very easily. Alpha-lipoic acid also is fat-soluble, so those two are very important. I believe that Dr Berkson’s protocol for utilizing alpha-lipoic acid may have to do with the function of keeping the blood sugar low, therefore allowing the tumour growth to be inhibited. But I think that again, a lot of studies need to be done. And that's one of the reasons I have accepted this new position in Miami for the Miami Cancer Institute. And I'm hoping that as the director of integrative medicine I will be given permission to explore the possible roles of using low dose naltrexone and other proven therapies in a system-wide manner. 

Linda Elsegood: Do you use vitamin D as well? 

Dr John Kim: Yes, of course, of course, I do use it. If it's low, I do supplement it. It's not a part of my protocol. Part of my protocol for cancer also includes fat-soluble vitamin C, that would be ascorbyl palmitate, because otherwise, you have to go through the vitamin C injections. I think that there are multiple responses you can get from vitamin C. So for example, high doses of vitamin C injections, that's been documented by Dr. Jeanne Drisko in the University of Kansas medical centre - I think that that research shows that the vitamin Cs can help the formation of hydrogen peroxide. And then the hydrogen peroxide goes after the tumour cells. In the dose that I'm using, I don't believe that vitamin C dose is high enough to do that. So it doesn't replace the need for IV vitamin C treatment. But again, it has to do with my current practice setting, that IV therapeutics is not very easy for me at this time. And by using the fat-soluble vitamin C, what I'm doing is overcoming the required amounts that can be taken in by the body.  There are no formal studies that fat-soluble increases the amount yet, but it makes sense to me. I think that fat-soluble forms of therapy can be extremely valuable.

Oh, another example of that is S-Ethyl glutathione where the ethyl group is attached to glutathione. Multiple people have tried to play with the different formulations, but I think that the actual chemical alteration to make the molecule more hydrophobic is probably cost-effective and the best solution for some of the molecules, to encourage them to go where they need to be going to do their job. 

Linda Elsegood: And you were saying that you weren't taught about LDN in medical school. Do you think that's likely to change anytime soon? 

Dr John Kim: I don't think so. I think about integrative medicine and how it is now being discussed, or at least covered more in elite medical schools. So if you look at the distribution of integrative medicine in the United States alone, really it's reserved for what I call first-tier medical schools like Harvard, Vanderbilt, Duke, Yale. But it has not really penetrated a lot of the regular schools with the exception of maybe the University of Arizona, where Dr Andrew Weil started the program. Even there, I think medical students have a lot on their plate. I don't think they get enough about nutrition. I think that the medical education system is arcane. What I would like to see is breaks in mores in residence level, where after doctors graduate medical school, they get trained. That's where the doctors learn to be doctors.

What I've done with my recent book, in some sections, I've even published the patients’ lab results - not patient's identity - but their lab results, so that they can see after treatment with LDN that the TSH would start low, and then the TSH would normalize. T-3 would be high and then it would normalize and then it would also see the antibody levels all responding. 

Linda Elsegood: I understand that there is a medical school in Oregon that actually teaches LDN to the medical students. So that has to be a start, probably. 

Dr John Kim: It has to start somewhere. I think that for me that integrative medicine means working with patients, and that has really helped me to learn about an LDN. The nature of my practice is about 50% dealing with intractable pain. The other 50% is dealing with patients who have complex problems that they really can't get answers on. And what I found is that LDN doesn't cure everything. I think that it's dangerous to say one thing can do everything. Like, if you do LDN, you don't still need to practice good medicine. 

But LDN can be an amazing tool for autoimmune diseases especially. A lot of the tools that we have are not benign tools, or you cannot use steroids forever, you cannot use immunosuppressants forever. And I think that LDN also helps you to understand the nature of the disease. I'll give you an example. I had the longest time thinking why, how can LDN work for HIV? So when I began to read more about HIV, I found out that HIV actually is not strictly an immune deficiency condition. It's really immune derangement, meaning that the immune system is not functioning the way it's supposed to be functioning. So similarly we can postulate, we can guess we can think about cancer. Is it also possible that a cancer patient's immune system is deranged? It's not doing what it's supposed to do?

So in my practice, in the beginning, when people have an autoimmune disease, we would just use LDN. And then inevitably we would have patients for whom LDN isn't good enough. It's not doing the job by itself. So what I have done is more research, more reading, and more talking to other people, and I found out something very fascinating. What I found out is that if you have an autoimmune disease, it makes sense to check the person's autoimmune profile. And what I mean by this is not by doing conventional testing of things like C reactive protein, doing and an ANA check, or ordering an immune profile. And of course, I do that. Part of my assessment is to screen for their developing other autoimmune conditions before placing them on LDN. 

But if the patient does not respond to LDN, I think that sometimes, doing additional testing, either allergy testing to see if there’s an allergy to both respiratory allergens -  things like fungus, trees, grass, as well as food allergens. Both IgE and IgG can make sense, because again, if we're looking at autoimmune diseases as immune derangement, then you're looking for places that immune system is not functioning the normal way. I think the LDN is a powerful tool, but as I said, there are patients who don't respond to LDN alone. 

One patient had a double rheumatoid condition, and LDN alone wasn't doing it, acupuncture wasn't doing it. So what I finally did is testing on the food section, and the patients stopped eating that food; and I used immunotherapy to reteach the body to forget, to let go of the allergens that person had. And the amazing thing happened. Both of her rheumatologic diseases disappeared to the point when she went back to her rheumatologist and said, Oh, we made a mistake. We're sorry. And the patient said, Hey, you mean to say that my lab and my x-ray were all conspiring together? That's unbelievable. That's not likely. I think it's more likely the LDN plus the immunotherapy that Dr Kim asked me to do, is working together. And it's resulting in this remission. 

Linda Elsegood: You've mentioned your book. Would you like to tell us the title of the book and when it will be available? 

Dr John Kim: I'm hoping that the book will be available in December. The press release went out some days ago. The title of the book, I put it as “Understanding Low Dose Naltrexone Therapy” and then its subtitle is “A Cure For All”. I mean the illnesses of cancer, and chronic diseases.  I have to contact my old editor and see if she is available to take the job, because she edited my first book and she did such a great job, so I want to see if she can edit this book as well.

Linda Elsegood: Do you expect that you're going to be moving? Can patients still come and see you before you move, or are you fully booked? 

Dr John Kim: I think patients are still coming to see me, and my understanding is that - when I interviewed with them, they assured me that even though I'll be in the cancer centre and seeing mostly cancer patients, I will not be forbidden to see other patients. I'm really hoping that it will be the case because I feel like the autoimmune approach that I've developed can help patients, and especially patients who are not good candidates for conventional medicine in terms of long term steroid use, or the immunotherapy itself can be very harsh to some patients. So I'm hoping that I would be allowed to do that. 

And the other part is that I have this idea that some forms of cancer may involve the host, the patients. Developing all that I said about the immune derangement, that maybe their immune system is obsessing over something else, maybe food allergens; or they have an undiagnosed autoimmune condition. I've seen that once you develop cancer, you stop looking because cancer is such a deadly condition, you want to zone in on that. What I'm hoping to do is be allowed to do other observations, observe their autoimmune conditions. It can be more formal in terms of formal research, or it can be just the clinicians’ observations.  

I  remember a long time ago in London, the cholera epidemic was controlled by a Mr Snow or Dr Snow, that did not know the mechanism. He just used epidemiology to isolate the wells that were likely to be responsible for cholera. He didn't know the exact mechanism, but all he had to do is shut down those wells, the old water pumps, and then he was able to help. The field of medicine relies on collaboration and cooperation, and that's part of the reason I've accepted the position in Miami. But I think there's still room for one person to make an

observation, then through communication through books or through organizations like your organization, to reach out and ask these questions that no one else has asked. 

Linda Elsegood: Thank you. And thank you very much for your time, and sharing your experience. 

Dr John Kim: Thank you for the opportunity.

 

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

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

With hindsight, Susie realises that she started to get symptoms after a bout of Glandular Fever and a Hepatitis B injection. She didn’t really think she needed to address her symptoms until after her daughter was born in 1998. Susie battled on until the symptoms got worse and worse. Her symptoms were weakness in her legs, strange sensations, vertigo, nerves in her face, head and neck, no taste or smell, optic neuritis, painful spasms and cramps in her feet, legs and hands, incontinence and slurred speech.  Her doctor sent her for an MRI which came back clear but things continued to get worse. After a year she went back and eventually was offered treatment that she was wary of taking. 

After a house move, Susie heard about low dose naltrexone from an MS resource centre and she heard about Dr Bob Lawrence through that. He did many tests and recommended Low Dose Naltrexone (LDN) and a better diet. 

It wasn’t very long before Susie’s symptoms started to improve with LDN and she started to get her life back. Then Susie was diagnosed with breast cancer and she explains the treatment there and how that includes low dose naltrexone to reduce the horrible side effects of chemotherapy.

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.

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 - T_h1 which is your cells that actually gobble up bad bacteria and viruses. And then also has an effect on the T_h2 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 T_h1 and T_h2 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 T_h2 and also the T_h17, 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 T_h2 or T_h17, 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.

Sally - England: Breast Cancer, Lupus (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sally from England tells her story of breast cancer and lupus. Sally was diagnosed with Lupus when she was just 17 years old, she is now 49. Her breast cancer was diagnosed when she was 48. Sally has been treated with radiotherapy and chemotherapy while taking Low Dose Naltrexone (LDN) and although she couldn’t say definitively what made the difference, or all, she feels so much better, no longer has Lupus symptoms and her cancer is much reduced.  At present Sally takes only LDN and supplements and remains well. 

Pharmacist Larry Frieders, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Pharmacist Larry Frieders from the United States shares experience with LDN. Archived Show

Many years ago Dr. Bernard Bihari called me and told me about how he was using Low Dose Naltrexone. And he was looking for another pharmacist to help make some in the, particularly in the middle part of the United States. He had a couple of pharmacists working with him on the East coast, but there was interest in my area around the city of Chicago.

And after we talked a while, I figured: "What harm would it do to at least give this a try?" I mean, the standard dose for Naltrexone is 300 or so milligrams per day. And here was this doctor talking about a three milligram dose. I figured 1% of the recommended dose, the chances of side effects are practically zero.

And if this guy says it works with all of his experience and background, Who was I to argue with him? So he gave me an order for a couple of people in the Chicago area. And that's where this whole thing started.  Dr. Bihari mentioned to me that he was using it for AIDS patients and cancer patients, but he was just beginning to see the effects with some of the immune type diseases.

And the first two patients we dealt with were Multiple Sclerosis patients and they had it refilled regularly because it was helping them feel better.

We have now around 500 to a thousand people currently using LDN in the Midwest Chicago area.

And the number of conditions that people are using it for seems to be expanding almost every year. I just talked to a doctor yesterday who was very excited about using it for Rheumatoid Arthritis. And we've also had people with Irritable Bowel disease, other types of immune disorders who were successful with it.

One question that many patients ask is about fillers

We found that maybe calcium was not the best filler to use because there was some binding going on. And definitely we didn't want people using slow release. So we were recommending just the regular prompter lease type filler.

And I've always not liked lactose as a filler because there's a great number of people who have a sensitivity to lactose, because even though there's a small amount in there, just wasn't worth it in my mind to use lactose. So we've been using a cellulose seller for many, many years. And for people who don't like that idea, we also use rice powder, just plain old white rice powder.

Also they are concerned about side effects. Vivid dreams seems to be what happens, but they do go away very quickly.

The only real side effect that I think is worthwhile keeping in mind is that the drug should not be used if you're also using an opioid or a narcotic pain reliever of any kind.

Well, we've actually one of our oncology doctors here in the area actually had two customers, two patients who reacted pretty violent, some kinds of withdrawal type symptoms when they have been on pain relievers. So we've got a hard rule. Don't use Naltrexone if you're also using pain relievers that have narcotics in them, that's about it.

The LDN Research Trust did a survey about four years ago, I think were about 400 people that took part and we found that only 5% of people experienced any side effects at all.

Another important thing is the amount of medications patients take. In fact, I actually wrote a book of that title called "The on drug". I came to the conclusion or the realization that too many of us take too many drugs. And when I was in school, If people took three drugs, we have a statistical table that showed that their risk of serious side effects was about 80% higher than if they weren't taking any. And probably in most of the Western type societies, people are taking 10, 15, 20 drugs per day.

In fact, in my pharmacy, we don't sell commercial drugs. We only do the compounded versions.

LDN seems to be like the only real chemical drug that we have available on a regular basis, but it's a different perspective and I can come at this from the position of a pharmacist.

Summary of Pharmacist Larry Frieders's interview. Watch YouTube video for full interview.

https://ldnresearchtrust.org/

Paula - England: Breast Cancer (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Paula from England takes Low Dose Naltrexone (LDN) for breast cancer. 

She was diagnosed in 2010 after finding a lump on her breast; Paula’s GP suggested either having a lumpectomy or mastectomy. Her Doctor stated that she has the “best kind of cancer”, that being grade 1, slow growing prognosis. After more tests and reconstructions, Paula was then told she had stage 3 and then it was stage 4. 

Paula researched and found a Facebook group that advocated LDN and other natural remedies and Paula managed to get a prescription for Low Dose Naltrexone. She is optimistic that things are slowing down. 

For more information about Low Dose Naltrexone please visit https://ldnresearchtrust.org/

Paul Battle PA-C, LDN Radio Show 22 Feb 2017 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: today. Our guest is physician assistant Paul Battle from Colorado. Paul is an experienced LDN prescriber and also has personal experience of LDN.

Paul Battle PA-C: Thank you. I really appreciate it.

Linda Elsegood: Well, I know you've been prescribing LDN for many years. How long has it been now?

Paul Battle PA-C:  Since 2008 I believe.

Linda Elsegood: Okay. I thought it was longer than that. At that time, how many different conditions do you think you've prescribed LDN for?

Paul Battle PA-C: Approximately 20 or so. Ones that I can recall right now, all varying different conditions, an autoimmune disease. It does help with cancers that have had treatment already. I can't say it's a cure for cancer, but it's a, like a supplemental treatment, especially for people who've already had cancer therapy, stage four cancers.

And then certainly the autoimmune diseases, which can include Lupus, Crohn's disease, all sort of Colitis, Complex Regional Pain Syndrome. What I generally do is look at the disease mechanism, what the aetiology of it. If it has some antibody-associated mechanism, autoimmune disease, then I consider LDN and the treatment.

Many of these people really don't have any other option. They tried multiple drugs. A lot of the drugs will have side effects and they just are looking for another answer. LDN can help with a lot of people that don't have any other options. 

Linda Elsegood: And from the patients that you've prescribed LDN for, what has been their success rate?

Paul Battle PA-C: I would say the majority of the patients get some positive response. I would say probably close to 85% of people will get some positive response. Some are very dramatic responses. For example, I had a 13-year-old girl with Crohn's disease who after just 3 months, she had already been on the biologics and was losing weight and having difficulty she had no more symptoms. All her inflammatory markers were completely normal and she's still doing well. That was probably about a year and a half ago, just a couple months ago and she's just doing remarkably well. Same with some of the complex regional pain syndrome. This is a terrible disease that plagues people, that causes severe pain due to some dysfunction or dysregulation of the immune system related to the nervous system. It's called the neural glial cells. And some people, I've had 80% relief from complex regional pain syndrome. I first started that in 2010 when this young woman who was attending college couldn't finish college. We had put a spinal cord stimulator in her neck to try and control the pain, but she still wasn't doing well.

That was my first proposal ever for CRPS and Dr Chopra wrote an article, then published an article a couple of years later after I started this young lady on it, and it worked for her. She finished college, got a career, and after a year and a half, she went off LDN without a problem and since then, I've been treating multiple people with that disease with varying success. So it really varies though, like I never can guarantee to somebody that I'm going to cure them or they're going to get 90% relief. We're just trying to improve the quality of their life.

Linda Elsegood: And how long would you say it takes on average for somebody to notice that LDN is doing something for them?

Paul Battle PA-C: Well, I've seen people respond in some positive fashion within 2 to 3 weeks. For example, my son, (that's how I got interested in all this) within 2 weeks with his Crohn's disease started having a positive response, getting a better colour, less pain, fewer symptoms. But I've also had people where it's taken six months.

I had a woman who was a university professor with Complex Regional Pain Syndrome who just persisted. I said," just keep on, keep on. " And she was in a wheelchair. Her symptoms were so bad. She was disabled in a wheelchair.  Then six months later, I got all these Facebook invitations to look at this video, and here she was returning to work, which was a glorious thing.

And now she just texted me last week saying she did a five kms. That's going from a person in a wheelchair totally disabled to now running five kms. That's been about a year and a half now, but she stuck it out. And I asked people to be patient. Sometimes they do not think it's doing anything. For example, in her case, she said: " I don't know if this is working.

I'm just gonna see how it goes without it." So one Friday night, she ran out of it, and that was the last time she ever skipped a dose that she said it was the worst, she described her spinal cord on fire. And I've had a number of other people saying, "well, I'm not sure if it's working."

They stop it, and then they discover it was really a mistake to stop it. So I tell people in where from a couple, three weeks to six months. 

Linda Elsegood: And from all the patients that you have prescribed LDN for, have any had negative side effects?

Paul Battle PA-C: I think some people describe a kind of tiredness or a little fatigue they may have and sometimes it depends on when they take it. For example, most people take it at night, but I have a lot of patients with these syndromes that really creates sleep deprivation anyway. I don't want to have them risk their restorative sleep. So I have them take it in the daytime and I think those people probably have a little bit more fatigued and tiredness than the people take it at night.

I met some people that just like any other medications have a little stomach distress from it, but that's pretty unusual. And you know, I'm not even sure if it's the LDN, but, the sleep deprivation, I really haven't had troubles with that too much, because I titrate them up, fairly solidly over three weeks, sometimes four week time period.

Linda Elsegood: And would you say there's any condition better than any other that you found LDN works best for?

Paul Battle PA-C: I would say the inflammatory conditions of the joints work really well. Dr Berkson,  done great the presentations on Rheumatoid Arthritis, iPad, people who were on the biologics,  that is,  the biologic agents that are what's called tissue necrosis factor inhibitors, who were doing okay on those and, they couldn't afford anymore so they want an LDN and they actually got better results. One patient of mine now was mountain climbing. He wasn't able to move his shoulders for 3 years, went on LDN, and now he's welling up that he's climbing with his kids. So I think that the joint arthritis issues, the inflammatory bowel disease, especially Crohn's. I don't find all sort of colitis as responsive as the Crohn's patients. So I'm careful to say how successful it is with Ulcerative Colitis patients, but it's certainly always a good idea to try it. The gastroenterologists recognize the Ulcerative Colitis and Crohn's that may have some different mechanisms of action.

The cancer patients, I've had several stages for cancer patients. They're living any of them with the same diagnosis. That's been good. And how much of that is the LDN? How much is it good health and a good attitude? I don't know, but I just know the other people that were treated without LDN in their particular type of cancers are no longer with us.

So I think it is a help because of the two mechanisms that LDN works. It inhibits cancer cell reproduction, and it also, according to the new research done last year by Angus, Down in Great Britain where it actually helps change the gene action with apoptosis of the cancer cells. So I think it has a dual benefit therewith, with cancer.

Linda Elsegood: We have a few questions here and we will start with the question from Randy who has Graves' and Hashimoto's. And the question is," I've heard that LDN can lower thyroid hormone and sent a person hyperthyroid, but in the information, it says it can quickly make a person hyperthyroid.

Can it really have such opposite effect."

Paul Battle PA-C: Usually it's hyper because what happens is the Hashimoto's usually has a tendency, depending on what phase of the disease you're in. Graves', usually you're hyper and that could possibly cause the problem but what it is is the Naltrexone interacts with the antibodies so if a person is Hypothyroid from Hashimoto's thyroiditis, I always tell them to reduce their thyroid supplements by half or 25% because there's been a number of people who are hyperthyroid, they're on their thyroid medication, they take the LDN and the next day they're agitated, they are like high, they're hyperthyroid because what happens is it has a tendency to neutralize the antibody action, whether it actually reduces the antibodies or how the antibodies respond to the cellular receptors with antibodies to thyroid.

We don't know, but I always warn people to cut their dose down before they take their Naltrexone. In the case of Graves' disease, I haven't heard of it causing I hypothyroidism. I guess that would be possible if it's, a lot of the inflammation is causing a hyperthyroid state, which you can't get in Grave's disease and you reduce that inflammation, you could possibly reduce the thyroid activity there.

But I haven't had that personal experience with Graves' disease. Mostly I treat the Hashimoto's thyroiditis, and that's the most common cause of hypothyroidism.

Linda Elsegood: Thank you for answering that question for Randy. We have a quite long question here, so bear with me. It's from Shantelle.

She says, "So thank you for being on the show and greetings." And she's a 54-year-old woman diagnosed with disposed systemic CIRCLE DOMA 15 years ago. The only medication she's presently taking is IVIG and Plaquenil a 0.25. She lives in the UK and is currently in the process of finding an LDN doctor.

She says she's noticed that you have experience in bioidentical hormones, and she would be very interested in your views on estrogen and testosterone. Four months ago, she changed from oral HRT to testosterone gel to having biodentical pellet implants of estrogen 50 mgs and testosterone at 100 mg.

And since she's had the pellets, she's never felt so awful in her life in terms of depression, mood and run down. And she seems to catch every bug going around compared with the four months that she was on oral.

Paul Battle PA-C: I didn't quite catch the initial diagnosis but if she's being treated with IVIG that puts it in the same class of diseases that can be treated with LDN because it's going after the same problem. That is an autoimmune disease immune dysregulation. I have a young girl who was also going to be treated with IIVIG  for an antibody associated Peripheral Neuropathy.

She had problems with antibodies to her nerve receptors so she basically did not have a lot of function in her muscles, her GI tract and they were going to give her IVIG, but it wasn't insurance approved here in the United States, at least with their insurance so I offered a LDN, and that has proven to be very good for her.

She's back in school, halftime. She was in bed or missed all of last year. So the answer to her question is: I think LDN would be a very reasonable possibility for her to approach her other disease. Do you want me to answer the question about the hormone?

Linda Elsegood: Hang on. The main question when you get to the bottom there, because the testosterone and the estrogen implant is making her feel very depressed, very down, very moody.

She feels awful. She felt quite good on the oral HRT. So she's saying to you, she wants to go on the LDN, which should she take? Should she stick with the oral or the pellets?

Paul Battle PA-C: Well, I usually use the oral just because it's easier to titrate the dose. Once she got inserted pellets with estrogen, it might've been too high of a dose, and once you put the pallet in the subcutaneous tissue, it's very difficult to adjust the dose.

So she may be running very high. I usually like to estrogen to run around 60 to 100. That's what the literature shows to be protective against osteoporosis and coronary artery disease. But if you have too much, you can certainly have psychiatric side effects just like women get what they are on the birth control pill, they can have depression.

And as far as the testosterone pellets, the same thing, once you insert those, you're kind of stuck with those for 3 or 4 months. So some people love pellets because they don't have to deal with the daily pill and adjusting things but in my experience, it's just easier to adjust. If she has trouble with estrogen, you can just reduce the pill dosage.

I work with compounding pharmacy so I can make it whatever dose I want.1 milligram, 2 milligrams. The oral therapy for estrogen has been shown to be more cardioprotective than for example, a pellet form or a cream form. So for that reason, the dosing can be easier adjusted when it's in a pill or a cream form.

Linda Elsegood: Well, that's good. I think that was the route she was hoping to go down because she felt so ill and so down. So I think you've just confirmed it for her, so thank you for that. Here's a good one. Have you prescribed LDN for migraine headaches?

Paul Battle PA-C: I have. I have several patients with migraines that I prescribed LDN mostly because the current theory on migraine headaches is not our old theory of spasm of the arteries because they've done arteriograms and found that the artery diameter doesn't really change a lot when people have migraines.

So it's really more thought to be an inflammatory process of the nerves and therefore the LDN would be appropriate to try and adjust to an inflammatory condition like that. So I do have several patients with migraines on LDN. I do other things too but it seems like that's helped them.

They were treated in traditional medications for years, probably 5 or 10 years and I seem to be getting better results with the LDN. They stay with me, so obviously I'm doing something right for them.

Linda Elsegood: And I'm talking about headaches and migraines. Have you ever known LDN to cause a migraine headache?

Paul Battle PA-C: I haven't noticed it cause a migraine, but  I have had several patients say it does cause a headache more of the dull headache, not so much the pounding vascular headache type of symptoms.

Linda Elsegood:  And we have another question. It says," Have you seen LDN improve acne breakouts?

Paul Battle PA-C:  I have not seen that. I just haven't noticed that. I use other things for acne so I haven't observed that.

Linda Elsegood: Okay. Thank you. And what it's your opinion of using Ketamine infusions in conjunction with LDN?

Paul Battle PA-C: I think they can be done. I have patients, I just had one last week.  The ketamine works in a different way. it's a dissociative anaesthetic and it works by blocking the NMDA (N-methyl-d-aspartate) receptors. That's the receptor that transmits the pain to the brain and so what it does is it blocks that and so that really doesn't have any interaction with the LDN because the LDN works on opioid receptors, endorphin receptors. I think they can be used synergistically.

Linda Elsegood: And what conditions would you use the combination to for?

Paul Battle PA-C: That would be Complex Regional Pain Syndrome. When I used to operate on people putting in spinal cord stimulators, I would put it routinely. First I would give  IV magnesium prior to surgery and that has been shown in several studies that it can reduce pain 50%. That magnesium also naturally blocks the NMDA receptor, which the ketamine does so that works with ketamine. And then I would give an infusion during surgery and then after I would give an infusion for overnight to blocked the NMDA receptors so that the surgery would not precipitate an exacerbation of the Complex Regional Pain Syndrome or what's known as RSD, or Reflex Sympathetic Dystrophy.

That's only a diagnosis that I've ever used it for and I don't know of any other diagnosis that you would use Ketamine for. Ketamine is a tricky drug. Adults can have a miserable experience whether they can have nightmares and side effects from them can be hypertension, tachycardia, hallucinations, things like that.

So with adults, you do have to be careful with it. There are low dose ketamine infusions, and there are high dose ketamine infusions. Dr Kirkpatrick at the RSD Research Centre in Tampa, Florida, does a high dose. I've been there, and I watched him do his technique there. So that's the only diagnosed I can think of.

Linda Elsegood: Well, thank you very much. We'll just go to a quick break, and we'll be back in just a moment.

To listen to individual radio shows and interviews go to www.mixcloud.com/lldnrt.

This show is sponsored by Paul Battle PA-C. He is a well-respected physician's assistant. He takes a physiological approach for your optimal health using traditional and nontraditional treatments for autoimmune diseases and bone health, using hormone replacement therapy and low dose naltrexone. He has patients throughout Colorado and other states.

Visit www.pabattle.com or call 720 773 9041.

We have a question here, Paul, which you can sympathize with. Amy has a 17 year old daughter got Crohn's disease diagnosed four months ago. She says," Are the children taking LDN with success? What can I expect to see as an improvement besides better sleep, which assist with pain and improve quality of life?

And by that, she means more energy and able to go through a normal school day. Will LDN take her pain away?

Paul Battle PA-C: You're right. That is dear to my heart because that's how I got started with my son. And for her to know, my son was diagnosed with severe Crohn's as he hits at age 10. I think it started at age 9.

He had to have a good part of his small bowel resected that time, 3 years later, he had another severe exacerbation going into hypovolemic shock and so that is a time where I started researching by myself. And that's when I read Jill Smith's article in 2007 about LDN and Crohn's and she's an excellent and respect gastroenterologist who did excellent studies on LDN and Crohn's showing a remission. So if she wants to know if it works within 8 weeks, 69% of the people in her first study, showed that they went into remission, 89% of them showed that they had a significant reduction in the Crohn's index scores.

And what are those? The index scores are more symptomatic scores on a number of stools per day. Cramping, bloody diarrhoea, fevers things like that. Those, that 89% of them had significant reduction scores, so she can't expect a very good possibility that she would have less pain because the inflammation is causing the spasm, which is causing the pain.

So reduces the inflammation. Those symptoms will improve. They also will reduce the diarrhoea if she is having diarrhoea. You can get Crohn's in any section of your GI tract from the oesophagus to the anus. My son now, he's been on LDN for 8 years. He is a weight lifter, a bodybuilder.

He's doing really well. He has a strict diet so the one thing I would tell people that you don't depend on LDN alone. It's multi-system, multiple approaches to solving the Crohn's problem and if you do these other techniques such as dietary control and supplements, probiotics, things like that, you can expect to get good control of it.

As I said, I had a 14-year old that really pretty much doesn't have symptoms anymore. Inflammatory markers are gone, so you can expect chemical markers for inflammation to be reduced when she's on the LDN and yes, they had children on certainly had my own son on it. Dr McCandless treated many thousands of people with autism with LDN, and so it's proven to be very safe with children.

Linda Elsegood: Thank you. That was an ideal question for you, wasn't it?  Robin has asked the question. She's got Multiple Sclerosis. She's had been taking LDN since 2005 and in that time, she's had no new lesions and no active ones. She's had MRIs. She says that she's no better, but she's no worse.

MS has been stable in all that time. She uses a cane away for balance away from home and uses a scooter in large stores. Now what she would like to know is, does she need to continue taking LDN for the rest of her life, or is there a period of where she can stop?

Paul Battle PA-C: That's a good question. I wouldn't because she's been stable now for almost 12 years, I would be very hesitant to stop it. There are not many people with MS that are stable for 12 years. He could have 5 or 6 years where you have this up and down cycle but that's a long time to be stable.

She has no new lesions and the cost and the risk of LDN is so low. I don't know why she would want to consider stopping it. The other thing is the benefits of LDN with your immune system in general. It upregulates many of the things that help protect you from infections. It upregulates the natural killer cells and with the new research and cancer and the old research in cancer with doctors Aegon? it may help. I can't say for sure, but there are no studies on preventing it cancer. But certainly, we've seen the action clinically and how it benefits people with cancers. I would really recommend that she stay on it for the rest of her life.

Like I said before, there are people thought: " There's no benefit here. I stop it." And they paid the price. And MS is not something you want to have an exacerbation, it can be quite devastating for some people.

Linda Elsegood: Exactly. Yes. I certainly wouldn't want to come off the LDN.

We have an interesting question from Kat and, she says that she takes baking soda in water for reflux before she goes to bed, but she also takes her LDN before bed. And will the baking soda stop the LDN from being absorbed?

Paul Battle PA-C: It might. I wouldn't really recommend that because of the baking soda itself, could inhibit the absorption of LDN.

It'd be best if you could take the LDN maybe an hour after that. By then, the baking soda should be out of her stomach and into her small intestine. So that's why we don't recommend compounding pharmacies to put calcium and other minerals in with the pills because it can disturb the absorption.

If she really needs the baking soda then she might consider doing LDN in a topical form with the oil or cream or something like that. If she has that much trouble with reflux she might have eosinophilic esophagitis, which LDN can be helpful for, since it's also an immune-based problem and that seems to be a more common diagnosis. So in the end, I wouldn't recommend her to take it at the same time.

Linda Elsegood: Just on a personal note, I used to have to take an anti-acid every night for acid reflux, which was really bad. It used to burn the back of my throat and absolutely awful. But have changed my diet and not eating gluten or dairy, the acid reflux has gone on.

I no longer have to take that medication, so I'm quite pleased.

Paul Battle PA-C: Excellent. That's the way to do it. Glutamine also was another nice thing to do. It's just an amino acid and that helps with reflux also. That's what most of the intestinal cells are dependent on for energy and also helps with restoring the intestinal cells so that's another thing she could try, but you're right, Linda, that's the best thing to do is just get away from those triggers.  Gluten and dairy are the two most common triggers for many of the diseases we're talking about. We are not used to those kinds of proteins.

Linda Elsegood: And we have a question here from Heidi and she says she's got resistant depression. "I've been on every type of antidepressant and been in counselling on and off for years, and nothing works. I currently attend CBT I am suffering from crippling anxiety, depression, and insomnia. I've read that LDN can help.

I'm very desperate for help. I wish to try what would work"

Paul Battle PA-C: That's a good question. Some of the psychiatrists on our meetings are saying it can help. I mean, it certainly, increases the endorphins or at least the endorphin function. So that in itself can help depression. I don't know if it'll help the anxiety. The cognitive behaviour therapies he's doing is helpful but newer research is showing that many people have depression. It is an inflammatory condition. For example, people who have had a heart attack, the highest risk for reinforce, and that is, another heart attack occurring is depression and it's not an accident because of inflammation from depression. Inflammation in the presence of coronary artery disease can cause the plaque to be released from the wall of the artery causing a coronary thrombosis. So I think it would be worthwhile. There are studies, and I think Sweden and Japan, are showing that people who didn't do well on the medications, did well responding with high doses of fish oil. It is also an anti-inflammatory, and I'm talking large dosages.

For example, 5 to 10 grams per day of fish oil. Because DHA, which is in the official, makes a good part of the brain weight, about 20% of the brain weight so in the studies that Purdue University with children on anyway, so that most of the kids with this kind of psychiatric diseases, 85% had low DHA.

So fish oil is another anti-inflammatory, another option for people with depression. And the other thing that's important, since I do a lot of hormone work is to make sure that the thyroid is optimized. I don't mean in the range or normal. I mean optimized at a good level, healthy level, not just in the range, like 95% of the population and that has been shown in psychiatric journals to be just as good as antidepressants for depression therapy.

Linda Elsegood: I know many people who are using LDN for depression and anxiety, and I found that it really does help. Certainly got nothing to lose by trying it.

Paul Battle PA-C: Right.  It's a great economic thing with really minimal if any side effects.

Linda Elsegood: Exactly. We have a question here from Robert who's got CFS/ME, and he said, "I was originally taking LDN at 4.5 mgs daily.

Now I'm taking it every other day based on an article which I have read recently, which is recommended, taking it every day or every other day.

Paul Battle PA-C: We have all, traditionally been prescribing it every day because the blockade is four hours and the immunological benefits that had been described byDr Dagan and Dr Bihari himself show that the immunological benefits last for about 20 hours. For that reason, I usually do a daily dose. Now for this person, if it's benefiting him every other day, his receptors may be more sensitive, and he does not need the 4.5 mg. What he might try is take half of the tablet and take two 2.25 milligrams a day versus every other day. But then, the pharmacokinetics, that is how the drug works and how long it lasts, it would be generally recommended to be on a daily basis. Now,  you got to understand how LDN works. It is an opiate receptor blocker, and if somebody has more sensitive receptors, they may need a lower dose or not as frequent to make their immune system actually, most beneficial.

That's true. We find with cancer. We don't like to go too high on the dose. Anything above 4.5 I don't think is a good idea because then you're blocking the benefits of the opiate growth factor that Dr Zagon has described in the past. So he just may find a level that's good for him, and that's perfectly fine, but the pharmacokinetics usually indicated it should be a daily dose.

Linda Elsegood: Thank you. We'll just have one more quick break, and we'll be back in just a moment. 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, these email, linda@ldnrt.org

 I look forward to hearing from you.

This show is sponsored by Paul Battle PA-C. He is a well-respected physician's assistant who takes a physiological approach for your optimal health using traditional and nontraditional treatments for autoimmune diseases and bone health using hormone replacement therapy and Low Dose Naltrexone. He has patients throughout Colorado and other states.

Visit www.pabattle.com or call 720 773-9041

Welcome back. I wonder if you could tell the people listening, Paul, the benefits of attending the LDN conferences, either in person or the live stream.

Paul Battle PA-C: Well, I've my personality. I think I've been to now 4 or 5 of them and the benefits certainly I get as a practitioner, but he can also apply as a patient or interested individual, is that you hear people from all over the world and the different applications that they're using it for. When I look at myself, I'm only one practitioner in my own experience, and I certainly haven't treated everything so it gives me a great advantage to listening to other speakers from anywhere around and what they're using it for, some of which I really never thought of.  The psychiatrists are talking about how it might help depression and may help sexual function, for example.

I certainly never thought of that so I think the biggest advantage is you're seeing some of the top people around the world who've been using this for a while and all the different indications so that if you have a disease that has not been a common one that we told about LDN, like Multiple Sclerosis and Crohn's, but it's one of these more rare diseases, you then can say: " This might be an option for me." And then try to find the LDN prescriber to try it. It's such a low-risk treatment. It certainly would be worthwhile for a lot of different diseases. I think you've counted over 200 autoimmune diseases now that I think we had the experience. It is a lot of diseases to cover and it's great to hear from other people around their experiences.

Linda Elsegood: And this year we're getting case studies and some prerecorded presentations because there was so much information there that we wanted to present to everybody. It would have taken like two weeks just to sit there and watch. So you're limited to what you can do in three days, but there is going to be a lot of extra material there.

But the Q&A sessions I find amazing because not only do people in the room get to submit questions, but the people who are listening online as well, and there are some amazing questions that come up, and it's really interesting to see all these people that have been prescribing LDN for so long.

Some of the questions are very complex and answering them can be tricky. We had feedback last year from one doctor who said she thought the Q&A sessions were amazing, and she had all her questions answered. She had some questions answered that she would have asked herself if she thought of them and the whole thing was unbelievable. She said, because some of the questions that were asked, I think there are only a few where nobody on the panel knew the answer, and they just shook their heads and said, no, I don't know that one. So for her, that meant every time somebody answered a question, they didn't answer it to give an answer.

They answered it because it was a fact. So for her, that made the whole thing believable. So, that was good. But I always find that the conferences, the atmosphere is electric. You've got all these people that are so for LDN. It's just amazing, isn't it? The actual feeling in the room.

Paul Battle PA-C: Well, it is. It's a great comradery because it's still not a well-known treatment and if it doesn't have salespeople doesn't have commercials on TV.

So it's really been pretty much up to people like you, Linda, who's been one of the leaders in promoting LDN around the world and that's been my mission since it says my thumb's life is to speak at international conferences sponsored by you and sponsored by other organizations. I'm going to be speaking at the Age Medical Management conference in Florida in April about LDN and that's a whole different group of practitioners that will be hearing about LDN from myself. It's a nice, progressive movement that's helping thousands of people around the world in a very economical way. I just wish there was a way we can spread it a little bit more, but commercials are expensive, so it depends on all of us to be together.

That's where I feel a real brotherhood and sisterhood about LDN movement. We don't have a lot of help other than us volunteers or in your organization.

Linda Elsegood: And this is where the good thing is in sharing case studies and people getting together to discuss different ways of treating different conditions with LDN.

It's a good way of everybody learning. We do have another question has just come in and it's for Rheumatoid Arthritis. The question is, "How long should I take LDN to treat my Rheumatoid Arthritis?"

Paul Battle PA-C: Well, I'm not sure if he's asking how long should he take it before he notices a difference, or how long should he take it to treat it. I would stick with it at least three or four months before he would expect any dramatic results. Just give it that much time. If he does have a good result in the end, if you can get 70 or 80% improvement then he used to just stay on it the rest of his life. Rheumatoid Arthritis is not one that goes away. I would want to make sure though that it is Rheumatoid Arthritis. I had a patient in my clinic who was told by the rheumatologist she had Rheumatoid Arthritis, and so for 3 years, she's been thinking she had rheumatoid arthritis and I checked her for Lyme disease, through Armin labs, the German lab that we have come to our conferences, and she was positive for Lyme Arthritis. So the question is always make sure you have the right diagnosis also. But if he gets a good relief, Dr Bert Berkson in New Mexico has a great presentation on his patients with Rheumatoid Arthritis showing the serological markers improving dramatically on LDN. Many of the people were able to get rid of most of their rheumatoid medications of which a lot of them have side effects.

Linda Elsegood: Yes. We've had the lady Mary, who's been listening to the show, and she's talking about Complex Regional Pain Syndrome, and her daughter is 15 years old. She says: "Is it safe to take LDN at the same time as Gabapentin". Her daughter is currently on 2,700 milligrams a day, and she'd love to get her daughter off the Gabapentin but it's the only thing that takes the edge off the pain.

"Is it necessary to go gluten-free to find relief?" She said: "I know she should, and I'm gluten-free myself." But her daughter is not ready to accept. That's what she needs to do. "Are there any studies out there on the longterm effects of using LDN in adolescents?" She often searches for weeks and finding studies difficult.

What is the most normal dose for CRPS? She's 5,11 foot and weighs 140 pounds. Thank you for your help.

Paul Battle PA-C: Well, that's interesting she brings that up because I had that exact patient in my office about an hour ago. She's the CRPS patient on Gabapentin, and she's been trying to get off Gabapentine.

I believe the Gabapentin may have been helping her a little bit because Gabapentin can work with the LDN as it helps attenuate the nerve transmission. It's a class of drugs, like anti-seizure drugs, so she can certainly use them together. And is there any studies? There aren't any longterm studies on kids.

We just know that like Dr McCandless had kids on the LDN for years and there's never been any problem longterm. My son's been on it for 8 years without a problem. We have the OB-GYN doctors in Ireland who use the larger dose Naltrexone, 50 mg for infertility during pregnancy, and they have not had any problems.

So I really can't think of any other safer drug and  I've been a PA for 35 years and a lot of different medicines that I prescribed over the years. I can't think of a safer drug then Naltrexone at  3 mg, 4.5. For her at that size, I think the 4.5 milligrams would be the appropriate dose, but I would titrate it up, and regardless of the gluten-free, I think when you have any kind of immune dysregulation gluten-free is a good idea. The gluten proteins are not ones that we have been designed to digest. Dr Tom O'Bryan, who comes to our conferences, is one of the experts on gluten, said to me last year that, even a person without gluten intolerance or the Celiac disease still has inflammatory changes in their intestinal track when they do biopsies 30 minutes later.

So my recommendations would be yes to have her do gluten-free. I know my son with his Crohn's took a while, but when he finally realized, this is his body, this is this future, now he's gluten-free, dairy-free, all that. So I would highly recommend that she go on a gluten-free diet.

Linda Elsegood: Appreciate what she's saying though.

Having a 15-year-old daughter who wants to socialize and go out and be part of the crowd, and then you can't go out for a pizza because you can't eat it. It's difficult, isn't it?

Paul Battle PA-C: You have to do a gluten-free crash. A lot of pizza parts and an Italian place have gluten-free pasta, gluten-free crust. I was just had that last night, as a matter of fact so it's workable now. It's much easier now for gluten-free meals and diet, and she can always bring your own food. That's what my son's done for years, is just pack your own food and have salads and things like that.

Linda Elsegood: Well, it's not very easy in England to find anywhere that is gluten-free.

You'll find that when you come over. When I went to travel and, we were hungry, and I just wanted to grab something. I went to the supermarket, and I said to the lady because I couldn't find it," Do you have a gluten-free section?" So she said: "Yes, but it's not very popular."

We're going to stop it and we've only got what's left on the shelf. And there were like six things, and it was like, then you're going to get rid of all the small section. You do have. I thought that was quite amazing.

Paul Battle PA-C: They need more education there because the Northern Europeans, as I understand it, have a little higher incidence than other population.

That is 1% of the population so I'm surprised at that. That's unfortunate.

Linda Elsegood:  We took our grandson to the cinema last week, and we were looking at menus outside to see what was gluten-free. Many places don't have menus, and we were looking at TJ TG Fridays, and we went inside and they actually have a gluten-free menu. And it was like," Wow, a whole menu of gluten-free!" You can choose it. This is it! Take it or leave it! There was actually a choice. That was very good. I had a gluten-free burger and a gluten-free bun, and it was very tasty.

I was going to say to you, Paul and anybody else out there who's listening, if there are any conferences coming up where you're a speaker, or you're attending a conference, and LDN is going to be one of the topics, let us know. We actually have on our website now an events calendar for talks and lectures so that people can read and have that as a resource available.

So you would have to give me the details, Paul, and we'll put that on there in the event calendar.

Paul Battle PA-C: We can spread the word. I love doing it. If we can help a couple of hundred people. And mostly what I really like doing is teaching the practitioners because I figured each practitioner has 1,000, 2000  patients in his practice. You've helped that many thousands of people at least be exposed to the LDN, by teaching the practitioners that, I think has a big impact on l.

Linda Elsegood: And word of mouth. Taken hold, hasn't it? People are telling friends and social media. I must admit I didn't want to join Facebook. I don't know how many years ago now. Reluctantly thinking that suggest another thing I don't have time for, but I think we have about 18300 members now.

I'm on there and I'll take this opportunity to thank all the wonderful admin people that we have who answered all the questions and help and steer people and give them advice on how to find an LDN prescribing doctor. Without them, Facebook wouldn't continue, but the number of people that pass through, who come, who go, who take the information, go to their doctors and get LDN prescribed It's a wonderful tool.

Paul Battle PA-C: It would just have to educate more people, more practitioners.  Some people may not be open to things that they're not trained in, and certainly the lack of a lot of clinical trials that do make the practitioners a little hesitant to prescribe it, but if you educate yourself, I've read a lot of it, all doctors papers and convinced that it's definitely a good thing for my patients.

I do certainly not hesitate to do that, but you do have to get educated, and that's what we're doing.

Linda Elsegood: Well, I'd like to thank you very much, Paul, for being with us today. We've just about run out of time and you've been amazing. So thank you. And I look forward to meeting you in September, but I might meet you when you come over later in the year.

Paul Battle PA-C: Yes in summer. That'd be great! Okay, Linda, I appreciate it and a really great time. I love helping out.

Linda Elsegood: Thank you very much.

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.

Mia - US: Rare Aggressive Head and Neck Cancer (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Mia takes Low Dose Naltrexone (LDN) for a rare aggressive form of cancer; nasal pharyngeal carcinoma which was diagnosed in 2006 when she was 43.

She underwent conventional treatment - surgery to remove the tumour in the nasal cavity followed by a year of concurrent radio and chemotherapy. Keen to change her lifestyle and boost her weakened immune system Mia sought a functional medical practitioner and found Dr John Hart in a region where Lyme disease was prevalent. He had seen many patients with compromised immune systems and prescribed them LDN which he and his whole family were also taking.

She has taken LDN along with her husband since 2007. The risk of recurrence of this form of cancer is high but Mia has stayed well and been in total remission.

When her dog suffered anal fissures and the vet said it was incurable she gave him Low Dose Naltrexone (LDN) too and a fortnight later it had healed. The vet now prescribes it to his animal patients and takes it himself. She has introduced it to several other medical practitioners and states that in the USA it is now used to treat Lyme disease.

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

Linda Elsegood is interviewed by Dr Jess Armine, 2014 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Jess Armine: Good evening everyone. This is Dr Jess Armine here at the bio individualized medical centre in South Eastern Pennsylvania. We have a very exciting show for you tonight. And we have a very special guest. We're going to be talking about LDN or low dose naltrexone, which is being used for the treatment of chronic illnesses.

We have the honour of speaking with Linda Elsegood hope I pronounce that right. And she is the leader in the movement to educate patients and doctors about LDN she'll tell you her story and what she's been doing. You realize that she is the epitome of the tireless individual, the indefatigable individual that is required to get this type of information out to people.

Please understand that this particular interview is being prerecorded. So there will not be an opportunity for live Q and. A. But, uh, Linda tells me that we'll have the methodology of asking questions or getting more information that will cue you in towards the end of the lecture. So, welcome, Linda, how are you today?

Linda Elsegood: Oh, I'm fine. Thank you very much for inviting me. 

Dr Jess Armine: It is our honour. So please tell us your story. 

Linda Elsegood: Okay. My life was working full time. I had two children, so I ran the home, did the cooking, the cleaning, the gardening, the decorating and working. I was a wonder, woman. I thought I could do anything. I was a bank manager at the time, life was fine and I was healthy, which I took for granted. And one day I came home from work and my father phoned. Now my father never ever phoned. He didn't like the phone. And he said, your mother's had a heart attack. She's now going in the ambulance. And I literally just got in and took my coat off. I put my coat back on, to get to the hospital.

My father was in a wheelchair, and the ambulance people wouldn't take him with my mother because he had to have somebody to look after him when he got there. So I said, well, tell them to take you. I will be on my way. And this was Christmas 2000. And um. It's icy. It's been snowing. The roads were terrible.

It would normally take me about an hour and a half to drive that. It took a good two hours. Now my mother took some medication to keep her alive. It was a very major heart attack, and I sat beside her bed. I'm an only child. My husband came and took my father home because they wouldn't let him stay overnight in case there was a fire or whatever. But I had it in my mind that if I held my mother's hand and sat with her, she would be fine. If I went to sleep, she would go to sleep, and that would be it. So I kept myself awake for 48 hours, which is rather silly, but it did make sense to me at the time. And, my mother came home. She had to have somebody look after her. So. I had both my parents here with me. I had to go back to work. A friend of mine was a nurse, and she came and helped me look after my parents, and I was tired.

I was so unbelievably tired. And then I started to get ill. Different things were happening to me. My leg became numb. I had this awful fatigue. I didn't really have the energy to do anything. So what happened then I said to my husband, I'm just having fatigue, I had flu, I had gastroenteritis. I was just so sick I want to go away. I want to go have a vacation, come back, and I'll feel fine. He couldn't come he was working, so I took my youngest daughter and while we were on holiday. We went to Portugal, and it should have been hot. It was Easter time, but it was freezing cold, and it was raining. So we decided to stay in or walk out in the rain. So we went out in the rain, and the left-hand side of my face was numb, it was as if I'd had a filling.

And I couldn't understand why I had this numbness on the face, and the left-hand side of my tongue felt as though I had eaten melted cheese and burnt my tongue. So we managed, and luckily we were only away for a week. And when I came back, I went to see my doctor who sent me to see a neurologist and he thought I had to have a mild stroke or I had a foreign disease of some kind, or I got MS. I didn't really like any of those options.

Dr Jess Armine: I don't blame you. 

Linda Elsegood: Oh, a brain tumour. That was the other thing. 

Dr Jess Armine: that's even better. Yeah. 

Linda Elsegood: I just wanted something where I could say, you know, here's a pill. Go home, and you're going to be fine.

So it went on and on. I was just so tired. I couldn't cope with working five days a week. I went part-time, I only worked four days a week, but that didn't make any difference. And then I got double vision I lost my hearing in my left ear, and at which point I could not move. So I had to give in. I couldn't go to work, I couldn't move. I had an MRI, a lumbar puncture, and was told it was MS.

I had a three-day course of intravenous steroids, and six weeks later I was given another course of intravenous steroids because they thought I was going to lose my hearing and my eyesight completely, which made me put on so much weight on a pale person my face was like a red beach ball. It was unbelievable. I didn't look like myself, but the second course of steroids didn't work. But at that time I was so ill. When I say ill, I was on the toilet the whole time. I didn't have any bladder control and my bowels. I know it's not the done thing to talk about one's bowels, but... Do I explain 

Dr Jess Armine: all the time, the major subject all the time. 

Linda Elsegood: Yeah. It was like sneezing. You know how you feel a sneeze coming, and you go, ah, choo. But it was like that from the bowels, and there was no control at all. It would be a case of it's going to happen, and it would happen. So you don't want to leave the house until what happens, because it happens every day, but never at the same time. Which would have been more convenient, I had no balance. I had to do a furniture walk. People with MS will know what I mean by furniture walking. But I would trip, I would stumble over nothing. I had very bad vertigo, when I moved, everything would spin, and my legs became as though they were rubber bands.

So I used to bounce a lot. So when trying to move, I ended up on the floor most of the time through one reason or another, but the left-hand side, this numbness on my face and my tongue spread, and after a few weeks you could draw a line right down my face, half my, my nose, my tongue, my cheeks, my chest. The whole left-hand side was numb with pins and needles, but numb in a way that any clothing or bedding that touched me was really, really painful.

And on top of that, I had twitching muscles, and I had burning limbs. Like you had a sunburn, and I used to say to my husband feel my legs they are on fire. I don't want to feel your leg, I would say please, please just feel my leg. 

Dr Jess Armine: I know when you're dating, they want to feel your legs

Linda Elsegood: he would feel my legs and say, what are you talking about? Your legs are cold. But to me they were, you know, they were on fire. So, cognitively, Oh my goodness. English became a second language. I couldn't recall vocabulary. Everything was crazy I would try, and I would say, could you make me a cup of tea?

I never ever drink tea. I only drink coffee. So my husband says, well, don't you mean coffee? And I'd say, well, didn't I say coffee? It’s like saying can you let the cat out he wants to go to the toilet. Don't you mean the dog? Well, you know what I mean why do you have to keep correcting me, you're depressing me. Please don't keep correcting me. I think I'm saying it right. And it's really depressing. So he would say to me. I'm telling you, so you'll know for next time. We'll know it doesn't work like that because I think I'm saying it correctly anyway. You know, next time I could call the dog a duck and still think I'm saying dog. But it was depressing. So every time I spoke, he was correcting me.

And then I started to get where I was choking on my food. So every time I swallowed something, he'd come and hit me on the back, and it didn't really help either. The only way I could speak to try and make sense because everything was so muddled in my head. I had to speak slowly, so I sounded as if I'd had a stroke because it was such a struggle. It was so tiring to try and get together the information to make a sentence, which to me made sense, but it didn't to other people. And then I couldn't find my mouth, my daughter used to have to put the cup to my mouth because I couldn't find where my mouth was.

Only saving grace was I slept most of the time. I was asleep for about 20 hours a day. I was only awake for like four hours, which was marvelous because I didn't feel anything while I was asleep. But then I also had pains in my head, really bad pains, and I do believe the doctors thought I was making it up. It used to be a pain size of the top of the wine glass. Sometimes it would be at the front right, sometimes the back left. it would move, but the pain was so intense. It used to make me feel nauseous. So yes, I was taking some very strong painkillers, which made the pain bearable. It didn't remove it. It made it bearable, but the nausea was even worse and I had optic neuritis where I felt like somebody was sticking a pencil in my eye, to move my eyeballs up, down, left or right, really, really painful. And I was in a wheelchair. I could furniture walk in the house, outside of the house I had to use a wheelchair.

And moving forward with now. It was October 2003, and I went to see my neurologist, and he examined me. He sat down. He looked at me, he leant across the desk, held his hand out, shook hands with me, and said, I'm really sorry to tell you, you're secondary progressive; then got up, opened the door and said, there's nothing more we can do for you. And showed me out. 

It was awful. I sat in the car, and I said to my husband, he may as well as say, go home and die quietly; don't make a fuss, you are an embarrassment, you know, there was no plan B. There was nothing anybody could do to help me. It was awful. I felt totally alone, frightened because I couldn't live my life like that.

One day the doctor came out to see me and bought me some more painkillers. I was in the house on my own, and he very kindly fetched me a glass of water and he left. My neighbour was keeping his eye on me, as my husband was working, and I thought the thing that really got to me was the look in everybody's eyes, family and friends. They all felt helpless they all wanted to help me, and there was nothing that anyone could do. And to see that in their eyes was awful.

Dr Jess Armine: I'm sorry. Okay, good. Deep breath. So it's a tough story. I understand. 

Linda Elsegood: So I'd got the tablets, and I thought that the family would understand if I took them. They would know why, and at least that way everybody, once they got over the shock, could be able to get their lives back. I was just lying watching the days passing without me participating, I couldn't do anything. I couldn't achieve anything, anything I wanted to do, I felt a total failure.

Dr Jess Armine: Okay. Take a breath, kid. Relax. Relax. Okay. We really appreciate you sharing your story with us because I know how much this hurts.

Linda Elsegood: Luckily managed to think who was going to find me. Would it be my 15-year-old daughter? So I couldn't do that. The only option was to fight it, to get something so that I could actually live again.

Between my many toilet visits, I used to sit at the computer. I thought there must be other people out there. I couldn't be so unique that I was the only one who ever felt like this. And, I found LDN and, I found some people that were taking it. And luckily. Some of these people were willing to talk to me and everybody said the same, if it wasn't going to do me any good, it wasn't going to do me any harm.

I printed out all the information I had, and I went to see my own doctor, who had retired by then, I had a nice new young lady doctor who was very kind and understanding and she said she was going to give the information to the partners and would I go back in two weeks? I went back, and she said she wasn't able to prescribe it for me, but if it was me, if it was her, she would like to try it so I could find somebody who would prescribe it for me she would be happy to monitor me. Now I found a doctor who would prescribe it for me, and amazingly, in three weeks, this awful feeling in my head where I couldn't think was like living in a television set that wasn't tuned in. All that came back in three weeks, and it was just amazing. I was able to think clearly it was such a big deal. I wasn't talking rubbish anymore.

Dr Jess Armine: So you were speaking coherently. 

Linda Elsegood: Yes. 

Dr Jess Armine: Yes. Wonderful. Wonderful. Yeah, 

Linda Elsegood: but my husband still says, I talk rubbish  (laugh)

It was for three weeks, and that was totally amazing. Now, my daughter, when she was 15, spent the whole of the summer holiday looking after me. Washing me, feeding me, and washing my hair. It was role reversed. So, you know, put your head back, close your eyes, you'll be getting soap in them. 

And guess what: she is now a nurse.

Dr Jess Armine: boy, that's a surprise. Yep. 

Linda Elsegood: She’s worked on a stroke rehabilitation unit for 18 months, and now she would like to train to be a nurse practitioner. She was very good at looking after me, I gradually got my balance back. Now, if you think I'd been years of not being able to carry anything because of the furniture walking, I mean, carrying a glass with anything and it would have just been too dangerous. And one day she said to me, could you get me a glass of orange juice? And I thought I haven't fallen over for a while. I think I can do this. So it was all in slow motion, going to the cupboard, getting the glass out, putting it down, opening the fridge, bringing out the orange juice, then taking it to her. I didn't fill it right up in case I spilt it. But anyway, I took it to her, and I came back, and I said to my husband, I've just taken Laura a glass of orange juice, and I didn't spill it, you know, it was to be a really, really big deal that I did. I'd achieved something.

Dr Jess Armine: beyond a big deal.

Linda Elsegood: Yeah. She didn't know how cognitively I thought I was suffering from some form of Alzheimer's. I thought everything was going to go, you know, the only thing I've got left was my memory, and that was slipping away from me, and that was my biggest fear that I was just going to lose myself completely. She came in with the empty glass and put it on the countertop and said, it's very kind of you to bring me a glass mom, but you didn't put any orange in it. Now because my state of mind had been so bad, I believed her and not myself. I thought I had imagined putting that orange in there and I just burst into tears. I'm thinking, well, that's it. You know, I was afraid I had lost it, but she was joking. 

Dr Jess Armine: Beautiful. 

Linda Elsegood: Honestly, I believed her and not myself

Dr Jess Armine: Well, you have good reason to, and she had good reasons to play with you a little bit and make you giggle. That's great. 

Linda Elsegood: Yeah. So with the LDN I was getting better and better, and I carried on improving for 18 months.

What was I going to do after being told there was nothing more that could do for me in life wasn't worth living. And suddenly it was again, did I say, okay I’m one of the lucky ones. Or do I tell the people who have been told, there's nothing more that can do for you who are in that really deep, dark place who perhaps didn't have the strength to carry on as I did?

So I decided, I wanted to tell everybody, you know, that it's not a miracle drug. It's not a cure. It doesn't help everybody, but it's something that you could try. It took five months, to become a registered charity, the LDN research trust was established ten years ago. So that was a big milestone. And we've helped over 14,000 people around the world.

LDN can work for any condition that has an autoimmune component. And so far we know of 174 conditions that LDN has been used for.

Dr Jess Armine: Let's go back a little bit. If we could, Would you explain to our audience what exactly low dose naltrexone is? 

Linda Elsegood: Okay. Naltrexone in its full strength was used for heroin and drug addiction back in the late seventies, early eighties and not used in low doses. It helps - according to D. Ian Zagon, who did lots of studies of LDN back in the late seventies early eighties - it helps regulate a dysfunctional immune system.

And Dr Bernard Bihari was using it in his practice for AIDS. And the friends of his had got a daughter who had got MS, and he decided that he would try it on this young lady. And it worked very well, and she was on it for many years. She did actually stop after a while thinking that she'd been misdiagnosed and her MS wasn't really MS after all. And when she stopped, she relapsed. Dr Bernad Bihari had been using LDN for many conditions. Cancer too. But that's the problem with LDN. When you say it can be used for all these different conditions, it loses some credibility because it sounds like it's too good to be true. 

Dr Jess Armine: It sounds like a panacea. Anything that's considered a panacea has veracity problems. 

Linda Elsegood: Yes, exactly. So when it was trialed in its full strength and people were taking it 50-milligram tablets three times a day, so it was 150 milligrams, It was only harmful to the liver in doses of 300 mg a day. And with LDN, which stands for low dose naltrexone, people normally take around 3.0 mg to 4.5 mg. So it's a very low dose.

Dr Jess Armine: In your opinion. And not going to hold you to this cause, you know, I realized that in the research nobody really knows the exact mechanism on how this works. But in your opinion, what do you think it works? 

Linda Elsegood: It helps boost endorphins. And it also helps with the Toll-like receptors So there are two different mechanisms there. And there are many YouTube videos from LDN prescribing doctors and scientists explaining how they think that LDN works. But people start on LDN, on a very low dose usually around about 1.5 mg and titrate it up by 0.5 mg every two weeks if tolerated. But in 2005 people were starting on 3.0 mg, and 3.0 mg was too high for some people and was always going to be too high. Some people were dropping out, but by starting on the lower dose and increasing it gradually the fallout rate has really dropped.

And there are different forms in which you can have LDN. Now, initially, it was just capsules. But some people had problems with their stomach. They could get very bad nausea, diarrhoea, especially people with Crohn's and ulcerative colitis. So there is now the capsules and we have a liquid, and there are sublingual drops, which is relatively new. I think the first was about August last year, and that's absorbed differently, which bypasses the stomach. So for those people that had problems with them, stomach issues, that's now no longer a problem.

Years ago it was told you could only take it at night because that's when your body makes more endorphins. But so many doctors have found that it did cause sleep issues with some people, and they tell their patients to try it in the morning, and they still get very good benefits. But full studies and trials are needed to find out.

With LDN it isn’t the case of height, weight ratio, we have many men that can't take 3.0 mg, and these are big men, and you get a very small lady who can take 4.5 mg, no problem. It is what dose suits you best.

Dr Jess Armine: I'm getting the impression that this can support or be effective in a myriad of autoimmune conditions, in your experience in talking to people. And again, I know we're, you know, we have our limitations of what we can talk about, only because we have to be careful about the men in black going to show up at our doors. Okay. But, in raising awareness about LDN, people are still asking I have X. What can you do for it?

What are some of the things that, in your experience and what you've seen, you interacted with a lot of people, obviously, what have you seen? I know it doesn't work with everybody. So with all of those caveats, okay, what are the things that you've seen that works best for.

Linda Elsegood: Okay Crohn's is a really good one, psoriasis, amazing, But with psoriasis, people have to be patient. I mean, there are people who will say that they noticed improvements after the first week, but normally with psoriasis, I would say it takes about six months. And do you know how angry psoriasis looks and red and scabby after six months, normally it starts to look like skin colour and then just all fades. It, to me, just is amazing. It's like normal skin.

Banking was my thing, I wasn’t medical, I had a first-aid certificate that was my whole knowledge of medical conditions. But this lady had alopecia. She also had Crohn's type symptoms and she was a mess. She was a young girl, very, very pretty and she had a high powered job. She has a little small velvety spot that she used to rub that she thought was quite cute, but the small spot spreads and slowly all the hair was just falling out. And her consultant said to her that there were some very pretty scarfs out there these days, she was in her early twenties she was horrified. She lost her eyebrows and her eyelashes, and she said that she'd lost her whole identity. She'd look in the mirror, and she'd gone, she wasn't there. And she thought everything she had was probably autoimmune, she found LDN and started it, and slowly her hair came back. Can you believe her hair came back? 

Dr Jess Armine: I believe anything you tell me 

Linda Elsegood: And, her hair came back black and white or black and grey mottled, even though she was young. People thought she'd had this really expensive colour job done on her hair, and she thought it was quite trendy, and left it as it was. It didn't come back the same texture. It was finer, more like baby hair but she had a full head of hair.

Dr Jess Armine: as you have with chemotherapy, it comes back 

Linda Elsegood: But she got her hair back and to her, that was just absolutely life-changing.

Dr Jess Armine: It sounds to me that if you have a chronic illness, especially in the immunological range, like autoimmune or whatever, LDN sounds like it might be worth a try. What are the risks, benefit factors? Are there any risks using LDN? 

Linda Elsegood: As I say, it was only found harmful if you took 300 milligrams a day of Naltrexone. So it's a safe drug. 

Dr Jess Armine: In low dose. 

Linda Elsegood: Yes. It's not toxic. And it's, of course, it's very inexpensive. People in the States pay around about $26 a month. It's not an expensive drug, but it's out of patent. So. drug companies are not interested in trialing it because there's no profit. But there is a company set up now called TNI  biotech, and they're planning some trials and studies to get LDN out there, and they have promised that LDN would never be more than a dollar a day.

Dr Jess Armine: Wow that's pretty amazing for anybody in the pharmaceutical industry to even say. Here in America, the more, the better. Yeah. More money they can charge for it, the better. 

Linda Elsegood: And we have a new medical advisor called Dr Pradeep Chopra, and he's from Rhode Island. Amazing man he's a pain specialist who uses LDN. You can listen to the interviews on the LDN research trust video channel. Very amazing. 

Dr Jess Armine: I was saying you were very kind to send me a bunch of links that we'll be putting on my website. Is that link included in there?

Linda Elsegood: It should be, he has patients come to him, he's usually the last in the line—people with fibromyalgia, neuropathy, regional pain syndrome. People that have been on morphine and fentanyl patches and that pain is still in between a nine and a ten every day. These are people that have to cope with such bad pain, and there's nothing, and a narcotic. 

He was told that they weren't working anyway, so he weaned them off, which is quite a complex thing. And nobody should ever stop taking any painkillers without medical supervision.

So he got them off these medications and started them on LDN, and he said to me, they came back and the feedback he got was that the pain was bearable. It was still there, but it was bearable, or it had reduced from what it was and for some, it hadn't gone. So he wanted to know whether it was a placebo, so he told these people that he was going to stop the LDN.

So he would know whether it was actually the LDN or mind over matter. So he said to them, okay, you've been on LDN now for this many weeks. Um, I'd like you to stop taking it. And he said, without exception, every single one said, you're not stopping. The LDN is the only thing that's ever worked for me. And he's done one small pilot study on, um, LDN, which he presented.

At the LDN conference in Chicago, he spoke and it was absolutely amazing that something so minuscule can have a better effect for these people than they were having with morphine? Absolutely unbelievable. And I had one doctor I met, and unfortunately, both he and his wife and daughter had MS, and he wanted them to try LDN, he was also a diabetic and had neuropathy. He had no feeling any toes, apart from pain which was awful, he tried LDN. And I think he said in 30 years, the pain that he'd experienced had virtually gone. It was no longer a problem for him. And that was the first time that I'd actually spoken to somebody. This was in around about 2008.

I didn't finish completing my story the numbness and pins and needles went, vertigo went, the balance problems went. I had my bowel and bladder control back. Cognitive, things cleared,  my eyesight is not as good as it was, but it's, it's okay. The hearing in my left ear is back probably 75% of the time, and it's amazing. I can achieve things. I know I've got MS. I'm not back to how I used to be, but if I plan things and pace myself. I can do anything, which is amazing. 

Dr Jess Armine: having a life, isn't it? 

Linda Elsegood: It is called having a life, 

Dr Jess Armine: And, I am so impressed I really am. You got tears in my eyes, right. 

Linda Elsegood: I set up the charity in such a way that nobody would ever get paid. So I work without any pay. But my payment is when people get LDN who's found it very difficult and they've been on it for a while, and they come back and say, thank you so much I feel like me again, or I feel I've been given a second chance, or I feel I've been given my life back. That is just so rewarding.

Dr Jess Armine: Absolutely. If your suffering was to have any meaning, that you've taken that suffering and served your fellow human beings is in this particular and, very expensive manner. You know, I always tell people, when I meet people like you, as I always say, that God has a special place roped off in heaven for you guys. You know, because it's true. 

Uh, I know the questions are going to be, excuse me. Is this a prescribed drug? Does it need to be prescribed by a medical person?

Linda Elsegood: Yes, it's a prescription-only drug.

Dr Jess Armine: Is there a listing of physicians that people can access, whether it's in the UK or United States or Canada? Is there a listing of physicians who are willing to work with people with LDN?

Linda Elsegood: Yes, some don't mind having that information out there, others chooses to operate under the radar. I do have a list ,and if anybody is interested and would like to find an a doctor in their area, if they email me - contact@ldnresearchtrust.org - I'm more than willing to help anybody wherever they live, to find a doctor. 

Dr Jess Armine: And I will, I will put that on during the show and I will have it on my website. It doesn't sound like it's expensive. It sounds like the risk-benefit factor is very low. It sounds like it handles the inflammatory portion of many, many different conditions, which a beautiful thing. There is an indication in what I've read, that there are conferences coming up tell us a little bit about that.

Linda Elsegood: We had one, as I referred to, earlier last year in Chicago, and for your listeners, if they would like to watch the whole conference in separate parts from each speaker, there are 12 parts, if they put in the search bar https://ldnresearchtrust.org/content/ldn-2013-conference

(Note: previously the LDN 2013 Conference was behind a paywall; it now is not.)

Dr Jess Armine: that's reasonable about how much is it? 

Linda Elsegood: It should be $40, but if they put in the code, Jess2014 They will get 25% off, so it will cost $30 instead of the 40

Dr Jess Armine: Thank you so much. You know that's going to be, a beautiful thing for people to listen to, and that's a reasonable price. And like you said, it's to cover costs. 

Linda Elsegood: Yes. We have Dr Pradeep Chopra talking about pain. We have. Dr Jill Smith. If anybody knows anything about the Crohn's, she's done Crohn's research, absolutely amazing work, where she's done an endoscopy and seeing what people's intestines are like. Crohn's is also absolutely awful. Five months later, absolutely clear, like the back of somebody's throat. We had Dr Deanna Wyndham from the Whitaker Wellness Center and she explained she herself had lupus, systemic lupus. She would have died if it hadn't been for LDN. But she uses it in her practice for many different autoimmune conditions, and with children as well.

And I forgot to say, LDN is also used for autism, and can be given in a cream applied to the skin, and that works really well. Dr Jacqueline McCandless did some studies with LDN for autism. She and her husband also did studies for HIV in Mali, which is also a very exciting project that was happening there.

Anyway, the survey should tell you that. So last year, the conference was very good. We had talked about cancer etc, and the air was electric. You could actually feel it crackle. It was a nice thing. And we have another one this year. It's going to be in Las Vegas, and be held over two days next time because we have so many great speakers.

Dr Jess Armine: There's a conference in Las Vegas.

Linda Elsegood: It's going to be November, and it will be the seventh and eighth, which is going to be a Friday and a Saturday. 

Dr Jess Armine: I'm going to do my best to come. 

Linda Elsegood: That would be a nice thing to have you join us.

Dr Jess Armine: Would be great to meet your guys. That is wonderful. So we have just a few minutes left. Believe it or not, the hour went rather quickly, didn't it?

Linda Elsegood: I told you I could talk!

Dr Jess Armine: No, it's good. You were worried about being able to cover stuff, and I said, no, no, no you'll just do it. Okay. Do you have any parting words, anything that you'd like to give as advice to someone out there who may have a chronic problem? How should they go about investigating whether LDN maybe a possible treatment; how should they approach their healthcare practitioner ,and so forth?

Linda Elsegood: Well, we have a doctor's information pack that we always say to people, print it off, take it to your doctor, they need to research it. I mean, there are some doctors that now have heard of LDN.

I think it's a case of if they specialize in a condition, like fibromyalgia or something. The patients are educating the doctors. You know, like you're the sixth person that's asked me for LDN, and they eventually look into it. But I would always say to people, don't take my word for it. Don't take anybody else's word for it. Do your own research. Read up as much as you can and find out if it's something that you think is right for you.

Dr Jess Armine: I want to reiterate the fact that this is a grassroots movement, the patients telling the doctors what they want; and what is that the doctors should learn is catching on. Let me tell you something. I have a lot of physicians who I mentor right now. It's because their patients have been arguing with them saying, you have to know this stuff. I'm getting better because of what Dr so-and-so is doing because he understands X, X, and X. How come you don't?

Six months ago, that doctor would have just said, that's not important. And then they learned that it was good. Doctors will look to train, other doctors will continue to ignore it, and you know, poopoo it away. In which case you change doctors, because let's face it, especially in most of the areas of the country, especially here in Philadelphia, they're not the only game in town. You deserve to be treated well and with respect and with knowledge, and you should demand that your doctors do the appropriate training. Okay? And this is how you bring them the information. Okay.

Such organizations like Linda's. Are invaluable because guess what? Now you have ammunition. Now you have information to say, Hey, this might work. Okay, there's no risk. There's only benefit. Let's try it. And if it's helping me, great. If not, you know, no harm, no foul.

Linda Elsegood: And I think people should try something sooner rather than later,  I've stabilized, and prior to that, I was deteriorating rapidly. It's a progressive disease, but it has halted the disease since I have now been on LDN. It was ten years on the 3rd of December last year. And honestly, I have had no progression since that time.. And I'm touching wood here.

Dr Jess Armine: And the bottom line truly is, if this particular substance gets you to a certain plateau point, and even if you had to take it every day as you said, it's about a dollar a day as opposed to some neuropsychiatric medicines that are better thousand dollars a month.

Okay. So. Again, even if it isn't the total answer and you have a chronic condition that can not be cured, it can be managed, it can be managed more effectively, and you can have a life rather than an existence  Linda, I want to thank you so much for being on our show tonight and sharing your knowledge and sharing your story, sharing your struggles.

You've given me several email addresses and links which will appear on my website. I can tell you that, giving of yourself in this manner, you're going to be helping hundreds and thousands of more people because this will spread the awareness of LDN. I learned a lot from myself tonight. I just want to take the time to thank you for your story. Thank you for you and thank you for all your hard work. 

Linda Elsegood: Thank you. It was my pleasure. 

Dr Jess Armine: Take care. We'll talk to you soon. 

Linda Elsegood: Thank you. Bye. Bye.