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Monica - US: Relapsing Polychondritis (LDN, low dose naltrexone)

An LDN Research Trust Radio show with Linda Elsegood and Monika from the US she talks about her experience of LDN (Low Dose Naltrexone for Relapsing Polychondritis with is a rare condition.

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

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.

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

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

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

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

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

Please watch the video to view the whole interview, Thankyou 

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

Sara - US: Rheumatoid Arthritis (RA), Lyme Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Sara, who is from Wisconsin in the United States, and she takes LDN for Rheumatoid Arthritis. And interestingly, her dog, Nico also takes LDN for Lyme disease. Thanks for joining us today, Sarah.

Sara: Oh, it's my great pleasure, Linda.

Linda Elsegood: So, who started taking the LDN first? You or your dog?

Sara: Oh, let's see.

I did, because I have a naturopath who told me that he also takes LDN and at the time I was doing pretty well with Rheumatoid Arthritis, like not very much pain. I had done some other things that were helping me, and when I went to my naturopath to talk with him about it. He recommended LDN, but I said, "Oh no, I've got it covered. I'm good." I'm on my way out the door from his office with a flyer for a class that our local compounding pharmacy offers a class once a month in LDN for patients, and I picked up this flyer. And got very curious, started doing some research online and a day or two later called that naturopath and said, "Please put me on, make a prescription for me, please."

And I started LDN on November 2nd, so almost a year ago in the evening and the next morning, nothing was different. I took it the next night. The third morning I woke up and said to my husband. "This is a really important date, and then I said, wait, wait. I don't usually think like that." That was such a change in my thinking because I had been somebody who everything was tedious. I would have said," Sure, I can do it, because I said I would do it, and yes, okay, I can power my way through that too." That was a very bleak way of looking at the world, but that morning I woke up and said," This is an important thing." And I continued to take LDN, and a few weeks or less than a few weeks later, I woke up in the middle of the night chuckling.

I chuckled with myself awake twice, and then again in the morning, I chuckled to myself awake. No, this is not me, not the me that I was. So the way that LDN has been useful for me is more with the mood change. And I have another friend who said that because of LDN, she can now tolerate her pain, and hers is polymyalgia.

So there's a bit of that. In my case, I do think the pain has also decreased. That I was really not so aware of how painful everything had been because I'd had the diagnosis for 13 years. But the pain continues to decrease. Honestly, I'm up to almost a year later. so then I went to the class.

I had already been taking it for two weeks, and I went to the class to learn more about it. And at the class, they had the ending slide there. Was a test that LDN can be used for pets too. And in the class itself, they talked about using it for Lyme disease. For when people have Lyme disease, and a light bulb went off in my head and I, my dog has Lyme disease.

I think you never get rid of that condition either. And he had been tested by the veterinarian and been put on antibiotics very serious for a month and then Gabapentin for the pain, and he was not doing well. His leg would fall out from under him. He was no longer jumping up on our bed. We wouldn't get him and say: "Poor Nico." Lyme disease and can't do anything else for him.

So I'll admit that I started sharing my LDN with him, and I didn't know the dose except that I thought a child that was 20 pounds, there was some little bits of information would take 1.5 milligrams. And so I gave it to him, and he had the same story. Linda, three days later, he was running up the stairs and jumping on our bed and lifting his leg again to pee.

It was both in both cases. It was a little miracle that happened really quickly. So I called my vet, and I said, "Would you learn about LDN?" And she said, "Oh no. We call somebody else." And I made six phone calls, including to ours UWM veterinary science department here, the University of Wisconsin and Madison, and nobody was interested in prescribing that or at the time.

But after six weeks, I called my first vet again, and she said, they had started learning about it. They had two other dogs on LDN. And she would prescribe it to Nico, even if it was just palliative for him. And I didn't fess up to say, "I'm here. He's already been on it for five weeks." But she was willing to do it if he had a liver test.

So I took him in for a liver enzyme test and of course it was fine. LDN is actually used for liver diseases too. And then she started prescribing it for him. And I've learned that there since prescribing it to lots of other pets and other veterinarians in town are as well. So we're all much happier at my house thanks to LDN and thanks to your work.

Linda Elsegood: I assume you're talking about the classes that David Hazel and Sue. I can't remember her other name off the top of my head. Hawaii from Hawaii. Apaka three, In Madison. In Wisconsin. Yes, they are doing amazing things in getting the word out there educating others pharmacists, physicians, patients.

 So, that's really interesting that you went to one of their classes. So if you had to say before you started LDN, your quality of life on a score of one to 10 what would it have been? With ten being really good.

Sara: Just before starting LDN, I would probably say six and a half or seven. It wasn't bad. And then, of course, your next question is, what did it change? I would say 9.9.  The colour of the world has changed. My mood is so different. I just find that I'm motivated to do what needs to be done and what I want to do in a way that I hadn't is for all those 12 or 13 years since the diagnosis.

And honestly, I was probably deficient in endorphins long before the diagnosis. What's true is both of my sisters now take LDN and feel like they're benefiting from it mood-wise. Very other friends are taking it for other conditions, but probably in my family, my mother had depression and died of pancreatic cancer. So, I really think that had we known about LDN sooner, all of us,  the quality of life would have been better for so many of us, but we have it now, and I celebrate it.

Linda Elsegood:  Oh, fantastic! You did say before that you would do something because you said you would do it and you would make yourself do it. Now when you have to do something how do you feel knowing you've got to go somewhere do something? How do you feel these days?

Sara: I'm very much like I, not only I can do it, but it's important, and I want to do it. It's important. That same feeling that I woke up three mornings after taking LDN. This is important, and so there's less of drudgery or pushing myself to do something. It just doesn't have that same effort required.

Linda Elsegood: Yes, because pushing yourself to do things It's very tiring in itself, isn't it? Forcing yourself all the time. I totally get it. Thank you so much for coming and sharing both your story and Nikos, and long may the LDN continue, and the best advocates of LDN are those that LDN has worked well for, so I'm sure you'll be spreading the word as well.

Sara: Yes, absolutely. Thank you so much, Linda.

Linda Elsegood: Thank you. This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station, software, bandwidth, phone lines, and phone calls to be able to continue with their idea of the show.

And thank you for listening.

Any questions or comments you may have, please email me at contact@ldnresearchtrust.org. I look forward to hearing from you. Thank you for joining us today.

Linda Elsegood: I really appreciate it your company. Until next time, stay safe and keep well.

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.

Sara - US: Rheumatoid Arthritis (RA), Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sara from the United States has rheumatoid arthritis and fibromyalgia. She was 24 years old when symptoms first started, but wasn't diagnosed until a year later.

Sara quoted that it absolutely changed her life, she found the right medication, but did develop very severe irritable bowel syndrome and seemed to come out of nowhere. Sarah was officially diagnosed with fibromyalgia in February 2010.

Sara first read about Low Dose Naltrexone (LDN) a few years ago before the Fibromyalgia, she found lots of information online, found our website and wanted a prescription for LDN after being skeptical of it. Her Rheumatologist would not prescribe Sara with LDN, because it was not FDA approved. But if Sara’s GP was willing to prescribe LDN, she saw no problem with that. And she would partner with him. After 3 days of being on the LDN medication, Sara felt absolutely fantastic. A few days after, she started seeing an increase in pain and fatigue, which then resulted with depression and anxiety. But this was due to being started on a higher Mg dosage. Sara rated her life a 3,4 out of 10 before her LDN mediation, she says that LDN is very cheap, and nothing has been more effective than LDN.
Please watch the video to the whole interview, Thank you.

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

Sandra - US: Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, NASH (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Sandra takes Low Dose Naltrexone (LDN) for Lupus, Rheumatoid Arthritis, Sjogren's Syndrome and Nonalcoholic Steatohepatitis (NASH). Sandra noticed the onset of symptoms in 1999 with tingling in her toes, a butterfly rash on her cheeks and severe memory loss and confusion. Then came bone pain, dry eyes and mouth, incontinence, weakness and muscle spasms.  Sandra was given traditional treatments like methotrexate, muscle relaxants and prednisone and felt that none of it worked more than maybe 50%.  

In 2009, after a lot of research and trying to find a prescriber,  she finally got her prescription for Low Dose Naltrexone (LDN). Remarkably within 24 hours of taking it, with no adverse side effects at all, the majority of Sandra’s symptoms faded away, the joint and bone pain took a little longer but eventually, all of her symptoms went and she felt that she had her life back. 

For more personal experiences and medical professional presentations please visit 

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

After years working in other pharmacies, Rick did not hear about low dose naltrexone (LDN) until he bought Palm Beach Compounding Pharmacy in Florida in 2009 – the previous owner had been compounding LDN. The forms they prepare it in are capsules, an oral liquid form dispensed with a syringe to measure it easily, and a topical cream. That has been prescribed a couple of times by Dr. Brian Udell, who is about an hour away, in Davie FL. They haven’t been asked to compound LDN as sublingual drops, which can be helpful for patients whose stomach gets upset from swallowing LDN; but they have compounded troches, a lozenge to dissolve in the mouth so it is absorbed through the lining of the mouth rather than the stomach. Then to the liver, where it will be metabolized.

Conditions he’s aware of being treated with LDN include fibromyalgia, multiple sclerosis, autism, ADD and other behavioral disorders, rheumatoid arthritis, and lupus. Rick’s clients have not reported negative side effects from LDN, however notes that The LDN Book says approximately 8% of people have some sleep disturbance, which is a pretty low incidence. He commented on how it can take three months to get full effect of what LDN can do for you, so impatient people need to be aware.

Linda Elsegood commented on the progressive nature of most autoimmune conditions, and how amazing it is to hold the progression with LDN. She noted that surveys found most people notice something around 4 months on LDN, although some are not stabilized until as long as 18 months on LDN. So patience is needed.

Rick tells of a Facebook page [LDN Got Endorphins?] with many patient stories, that has been informative. He has been selling The LDN Book and finds it valuable, though some content might be too technical for patients. He appreciates how it explains not only LDN, but the related body systems and how they work together, and relevant tests. Linda replied that sales of The LDN Book have done really really well, and it is aimed for both the lay person and prescribers. Rick has focused on getting the book out to those who prescribe compounded medications, as they are the kind who think outside the box.  He knows many who treat things that would benefit from LDN: gastroenterologists who treat Crohn’s disease and inflammatory bowel disease, fibromyalgia, and other similar difficult to treat conditions.

Keywords: fibromyalgia, multiple sclerosis, autism, ADD and other behavioral disorders, rheumatoid arthritis, lupus, Crohn’s disease and inflammatory bowel disease. The LDN Book, compounding, side effects, low dose naltrexone, LDN

Summary from pharmacist Rick Upson, listen to the video for the show.

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

Pharmacist Masoud Rashidi, LDN Radio Show 11 Dec 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood:  I'd like to welcome my guest, Dr Masoud Rashidi.  He was from California, the owner with his wife, Dr Anna.  They own their own compounding pharmacy in Folsom.  Thanks for joining us today, Masoud. 

Masoud Rashidi:  Thank you, Linda, for having me on the show.

Linda Elsegood:  Could you tell us what made you decide to get into pharmacy?

Masoud Rashidi:   It started back in high school.  My dad knew a pharmacist, and I was able to shadow with him for a day.  It was interesting how you can help people and get to know them.  I wanted to pursue pharmacy after that.

Linda Elsegood:  Wow.  That's amazing, isn't it?  So how long have you been a pharmacist now?  Did they know about LDN?

Masoud Rashidi:  I've been a pharmacist for 15 years now, since 2004.  That's when I graduated from Western University of Health Sciences in Pomona, California.  That's where I received my doctorate degree and started working a few months thereafter.  I started working at a chain, like everybody else out of school.  They did not know about LDN.  After a few years, I started working at a chain in California.  A couple of years later, I decided to explore, because there was a need for a compounding pharmacy in town.  There was none available at the time.  So, we had rotations back to school to learn about compounding, but we still didn't know about LDN until I began compounding and started our own company in 2007.  That's where we became involved in compounding LDN.

Linda Elsegood:  So, in your pharmacy, what forms of LDN do you offer?

Masoud Rashidi:  We provide a few different ones.  Mainly, we do capsules in many different dosages.  We also do lozenges.  We've compounded a topical, such as a transdermal application; also a liquid, both in aqueous solution or oil, depending on the situation  The kid may take the oil or not, so we go from there, depending on what flavors we can incorporate into the different formation.  We pretty much do every possible dosing that is available right now.

Linda Elsegood:  And what strength do you normally start with?  Do you do a micro-dose?

Masoud Rashidi:  Yes, we do micro-dosing; actually we've done a few of them.  Our most common one, of course, is the typical dosing, 1.5 mg, 3.0 mg, and 4.5 mg, but the last few years everything has changed.  We’re doing so many different doses every day.  We've done from 0.1 mg all the way to 9.0 mg.

With micro-dosing, we do from 1 microgram to 5, 10, depending on where are going to end up with that particular patient and their needs.  We've been doing both, like several different dosing, and we send our products to third-party testing to ensure potency and quality.

Linda Elsegood:  Having spoken to so many pharmacists, it's very difficult to say that one microgram of LDN is very difficult to know.  It's very hard to prove.  You have to find the right people to have it tested.  Lots of people, I'm sure, who take LDN are not aware of all the efforts that compounding pharmacies must go through.  Would you like to tell us a bit about that? 

Masoud Rashidi:   We received two different chemicals of Naltrexone from a couple of different wholesalers.  Then we send it for testing after compounding to determine the best one to use.  It’s not a requirement to do all this testing, but we go above and beyond to make sure we get the right dosing.  We send samples to the third-party lab to be tested to see if it is within range.  Legally, you can have 10% variation on the capsules, but in our lab, we like to keep it less than 3% to be even more accurate.  When we send it out, we tried to keep it less than 5%, especially when you get to low doses.  Ten per cent is a lot of variation when dealing with one microgram, so we try to keep that even lower than what's legally allowed to ensure higher quality.  In the past, they've rejected a chemical because it had too much water content.

Linda Elsegood:  What kinds of doctors are you dealing with?  Naturopathic doctors, pain specialists, MD’s, and other prescribers?

Masoud Rashidi:  Yes, you are right on.  One of our biggest prescribers is a nurse practitioner who specializes in women's health and sees many people with Hashimoto's and autoimmune.  We have an MD, after going to the LDN Research Trust Conference a few months ago, has become big on LDN.  We have a few naturopaths.  I go to different doctor's offices and educate them on LDN.  In California, unfortunately, a lot of naturopaths cannot prescribe; they must have oversight MD’s.  They must find a naturopath who can prescribe it because not every naturopath in California can do so.  We do have MDs, nurse practitioners, a variety of different doctors, even paediatrics.  One of our best cases was an autism patient, with a prescribing MD.  It was amazing.  Every time I think about it I get goosebumps because of what happened.  A few days later, the mom calls and says, “Oh, my kid is actually communicating with two siblings!”  It was three days later at 0.1 milligrams.  It's been about three months, and she's one of the best advocates for LDN.  She calls us all the time.  This child is talking more and more with the siblings and the parents and having eye-to-eye contact.  The mom said it was life-changing, and that's what we hear all the time.  My life has changed after LDN.  It's rewarding when you hear those words, and that's why we keep doing what we're doing.  We continue to conduct seminars for the public and for the doctors to increase awareness.  It's been very good for the patients, and our goal is to increase awareness on how great it is and how it can help in so many ways, especially with all the research articles available now.

Linda Elsegood:  What case studies do you have, feedback from patients, and their conditions?

Masoud Rashidi:  One of the biggest ones we get is RA or rheumatoid arthritis.  They get a lot of good response.  After a week or two, they can move their fingers, and they don't have much pain.  They've tried all these different drugs, and nothing works.  Now after a week or two, it's amazing sometimes.  For some patients, it takes a few months, but sometimes, within a week they call you back, and it's like, “Oh my God, what is this? This is working amazingly.” 

One amazing result was an MS (multiple sclerosis) patients.  I was brand new to compounding, six months.  We didn’t have that many employees, so we knew every patient that came in the door. He comes in with a wheelchair.  He’s tried everything.  We consulted with MS experts, and that's how we started with LDN, just speaking with them.  I kid you not, three months later, he comes in, WALKS into the pharmacy.  I'm like, whoa!  He was in tears.  He says, “I’ve been in a wheelchair for so many years.  I've tried all these drugs, and nothing has worked.  This has been amazing.”  That's when we started promoting LDN more, talking to different doctors about it.  We get to a lot of good feedback like that.  There are just too many of them to share.

Linda Elsegood:  What about patients with GI problems?  Have you had any feedback from those?

Masoud Rashidi:  Actually, we’ve seen IBS, IBD, Crohn’s disease, and things like that having really good results.  Of course, as we all know, not every drug is going to do 100% for every patient.  But we’ve had about 80% good results.  The funny part is that they’ve tried all other drugs that are commercially available, and nothing has worked.  At this point, they contact us.  After so many doctors, so many drugs, and they come in and then have good success with LDN.  Every time we do our seminars, people come in and ask, “Oh, would it work for this?”  So, we start researching.  Our latest question, Mom called us and said, “Okay, my daughter's addicted to narcotics.  They put her on Suboxone.  What can I do with LDN?  She's now more addicted to Suboxone than she was addicted to narcotics.”  We're researching that right now.  It's amazing how one drug can treat so many different conditions.

Linda Elsegood:  Definitely.  Still talking about GI, do you have any patients using it for SIBO, (small intestinal bacterial overgrowth)?

Masoud Rashidi:  I've read a lot about it.  We have a patient wanting to try it, but the doctor was not willing to prescribe it.  We referred care to this new physician.  This is our first case, and we'll find out hopefully soon.

Linda Elsegood:  What about Lyme? Is that something you've seen 

Masoud Rashidi:  Lyme…yes, we have.  So many people go undiagnosed, and then they get diagnosed, and they don’t know what to give them.  Then they're on pain meds and stuff like that.  We had a Lyme patient, we talked to her doctor and put her on LDN.  It has helped her a lot with her symptoms.  We've had quite a few patients, but she was a really severe case with multiple issues.  About two and a half months later she was off many of her medications, and she was feeling much better.  She could resume driving, not being on all these different drugs.  Previously, she was depressed.  Now she gets up, and she can do things in the morning.  We’ve had other cases with very good results as well.

Linda Elsegood:  Okay. And have you got vets around who prescribe LDN for animals?

Masoud Rashidi:  I've talked to quite a few veterinarians in town.  We’re writing a protocol on how to use LDN for pets.  One veterinarian has used it, and it helps with all the issues that humans have.  There are a lot of articles on that.  We've been starting them on the lower doses.  We do make it mostly liquid in an oil suspension so that it lasts longer.  We have had a few now.  The vets have been very happy, and the owners have been happy.  The dog had arthritic pain and could not move as much.  We gave him the LDN, the veterinarians prescribed it, and then a month or so later the dog is doing much better.  Veterinarians talk to each other.  We get more questions from different veterinarians every day and hope that we can get more awareness of LDN for pets.  It works for them.  We've seen results, few, not many, but I've read a lot of research studies on it.  I am hoping that it's going to become more popular sooner rather than later in the pet world, too.

Linda Elsegood:   Right.  It's all to do with raising awareness and making the doctors feel comfortable.  Not surprised that you have so many MD’s prescribing LDN.  Again, they are traditionally trained and many of them take some convincing to look outside the box.  You were saying ND’s in your area often can't prescribe the LDN.  What about physician assistants?  Are they allowed to prescribe?

Masoud Rashidi:  Oh yeah, they do.  We have one who's a big proponent of it because he's seen really good results.  He's a functional medicine PA.  He involved the doctor and everybody else.  It's contagious when you see good results.  They tell each other, and they start calling it in.  Yes, we have quite a few PA’s that prescribe.  Not as many as I want.  They're coming on board because we’re holding seminars in large scale now.

Linda Elsegood:  Yes, PA’s tend to have more time to listen to patients than doctors.  It's amazing what these service providers are doing.  We'd be lost without them.  

Masoud Rashidi:  You're absolutely right.  As far as they have more time to spend with the patient because doctors have a lot of other things going on at the same time. 

Linda Elsegood:  When you have a chronic disease, let's say MS or lupus, even fibromyalgia, trying to get the diagnosis isn't easy.  And then you’ve got to find somebody to help you to get the right treatment because obviously everybody is different.  It also helps to have that patient, doctor and pharmacist relationship, doesn't it?  You know, the triangle.  Presenting LDN to more doctors and letting them know that you're there to answer any questions or queries they may have I would think helps them become more confident in prescribing LDN.

Masoud Rashidi:  That's true.  Even in our patient's seminar, we had last month, we had four prescribers show up at the seminar that was for the patient.  It was very interesting.  In future seminars, we may broadcast on Facebook Live or somewhere, so more people can be reached who cannot come in.  All our seminars are free.  We do this for awareness.  We have people come in and share their stories.  Patients talk to each other, and then they start getting up and talking to the whole group.  That's amazing, too, because then they are hearing from the patient, not from us.

Linda Elsegood:  Of course, patients, as soon as they learn about LDN, they then go and find a doctor or educate their own doctor.  I think patients also play a big part in raising awareness of LDN, especially when they have good results.

Masoud Rashidi:  Exactly.  We give them a whole binder.  We've seen that patient take those binders to their doctor and show them some of the research studies, because some doctors are still thinking of Naltrexone as a whole dose Naltrexone and they're like, “Oh, you don't need it.”  We tell them, take this to your doctor, and that has helped.  You are absolutely right.  Patients are the best advocate for this whole thing because they see results.

Linda Elsegood:  We’ve come to the end of the show.  Thank you so much for having been my guest today.  It really was a pleasure speaking with you.

Masoud Rashidi:  Thank you for having us, and it was a pleasure speaking with you.  

Linda Elsegood:  Thank you. 

This show is sponsored by Doctors Masoud and Anna Rashidi.  They graduated in 2004 from Western University with a Doctor of Pharmacy degrees. Soon after in 2007, they opened the PCAP accredited Innovative Compounding Pharmacy located at 820 Wales Drive, Suite 3, Folsom, California  95630.  To better serve the community, for more information, please call (866) 470-9197 or visit www.icpfolsom.com.  

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