Marilyn - US: RA Pain (LDN; low dose naltrexone)
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Marilyn - US: RA Pain (LDN; low dose naltrexone)
Linda: Welcome to the LDN radio show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.
Linda: Today we're joined by pharmacist Sherry Galvin from the Compounding Center in Leesburg, Virginia. Thank you for joining us today Sherry.
Sherry: Oh, thank you Linda for having me. It's always a pleasure.
Linda: So can you tell us what's been happening in your pharmacy.
Sherry: Sure, yeah. I guess the latest related to naltrexone or low dose naltrexone is we gave a lot of thought to what causes problems for patients taking low dose naltrexone, or really any chronic medication that they have to stay on long term, and the biggest thing that sort of jumped out at us was compliance. You know, making sure that the patient understands the importance of taking it daily. That the patient can take it daily and starting to drill down into that we unpacked a few things that seem to be important to patients. You know one specific to LDN was getting that dose right. The tapering up to find that magical dose, but not having so much that you start getting side effects. So, finding the right dose was important. Having the therapy be affordable was important, and convenience and sort of being easy to take were other things that patients would give us a lot of feedback on. As compounding pharmacists, we like to think of ourselves as troubleshooters. So from there we take that and sort of say okay, well, how can we help our patients make sure that they are compliant on this therapy? And we ended up developing what we call a flex dose tablet. We have LDN flex dose tabs, and it allows the patient to taper their dose very easily without having to purchase multiple different strengths. They can get one tablet that is scored four ways. It's very easy: you literally just touch on it and it'll snap in half, and you press down again it'll snap into quarters. So, the doctor and the patient can work together to make sure that they're finding that magical dose, but not so much that they're getting side effects. So it does allow some flexibility for the patient to go up or down, and again, without them having to purchase multiple different strengths. Hopefully they're therefore making it affordable.
The other piece of that is realizing - and I know a lot of pharmacies do this - realizing that our patients need convenience. They don't want to remember it's time to call and get my prescription refilled, or even realizing they’re out of pills and don't have any refills. Then that gap in in therapy happens. So we instituted what we call an auto-refill program, and the patients can self-enroll. It's not automatic. They choose to enroll or not, and we will reach out to them about a week to 10 days before their medication is due to run out, and say hey, we're gonna get this ready for you, we're gonna go ahead and ship it out to you, let us know if there's been any changes. And we've had tremendous feedback from that. It's just one less thing they have to think about in their lives.
So that's kind of the latest things for us, the LDN flex dose tablets, and the auto refill program that goes along with it. Other than that, just sort of bouncing back from COVID-related things, and being thankful that we don't have people lined up out front waiting for a shipment of masks. It was such a crazy time. So it feels a little bit more normal in here now.
Linda: So, when you collate your patient feedback, what has been the experience with side effects? What side effects have been reported to you if the dose has been too high?
Sherry: Initially, the biggest complaint we get is sleep disturbance of some sort. They might say that they can't fall asleep, or that they're having such vivid dreams that they don't feel like they're getting quality sleep, and oftentimes the physician will just recommend that they either switch the dose to the morning, or that they back down a notch on their dose to see if that fixes the problem. Occasionally we'll get a person tell us they'll have some GI side effects, but not very often. This drug is so well tolerated compared to other things on the market. We really don't get a lot of complaints about side effects, thankfully.
Linda: And what about feedback of good results? How long does it normally take a patient before they can say, "I noticed that it's working for me."
Sherry: Yes. I sometimes will have a patient tell me after two to three weeks they'll start to notice some effects, but usually it's around two to three months that they'll say hmm, you know, looking back I realize my joints aren't as swollen or stiff. Or, I am getting better rest, I can exercise a little bit more than I used to be able to, and you know I'm a big fan of a symptom diary,, for lack of a better term to call it. Because a lot of times the changes are not miraculous, but when they start really documenting how they're feeling each day, and even putting a number to it, you know, scale of one to ten, how's my pain today; scale of one to ten how's my energy level today? It really gives you a little bit more information to compare today from two months ago, instead of just saying I'm not sure this is working. The other thing that we sometimes see happen is they'll think this drug is not doing too much, and they'll stop taking it. Then that's when they realize oh wow, it really was helping me. I just wasn't tuned into how much I had improved. So that's the other thing that we hear occasionally.
Linda: And what do you say to patients when they say they don't think it's working for them? How long should I take it before I stop and say it's not for me?
Sherry: We usually try to talk to them about their dose and just ask where are they? What have they done? Did they taper up? Are they too high? It seemed like everybody was going for that 4.5 milligrams per day for the longest time. And I think now prescribers really do realize there's a milligram that works for everyone, and it's not all 4.5 milligrams. Have they overshot the dose that is needed for their condition? We usually start there and talk to them about what dose they are on. What dose have you tried? How quickly did you go to this dose? Those sorts of things. But we do try to encourage them to at least give it a four to six month trial before they say this drug hasn't helped. Because we don't want them to abandon therapy too quickly.
Linda: We did a survey several years ago now and found that LDN did something for most people, even if it was stopping the progression. If they were having a rapid progression, it had halted that. But there were a few patients that it had halted the progression but it hadn't actually helped with any symptom relief. And then in between 15 and 18 months when you would think they wouldn't notice anything else they then started getting symptom relief. That was quite an unusual thing. So we actually say a lot longer than you. If you're okay taking it and you can afford to take it, we would always say take it for like 18 months before you give up. And exactly what you were saying when people say no definitely not working for me; no, I'm going to stop within two or three months they want to get back on it again because they had forgotten just how ill they felt previously. Yes. Yes that's always a thing isn't it. So in your practice, what would you say at the moment is the main condition that you're using LDN for?
Sherry: I would say the main condition would be the sort of the grouping, and I don't mean to say they're the exact same thing, but the grouping of either chronic fatigue syndrome or fibromyalgia seems to be the biggest, but we do have a lot of patients who have various autoimmune conditions, whether that be rheumatoid or psoriatic arthritis, things along those lines. Irritable bowel, Crohn's, that group of people as well would probably be the next biggest category, if I could put them in a group. But it's amazing what we hear people using it for, always seems to be some new thing, although probably if you drill down to it, a lot of what we hear complaints about are somehow connected to either autoimmune or some kind of chronic inflammatory cause.
Linda: And the patients with CFS, ME, fibromyalgia are usually the patients that have ultra-sensitivity to drugs, any drugs, and especially LDN. So usually in my experience, those people don't even start on 0.5, they quite often have to start even lower and have to titrate it slowly, as their system gets used to it. Is that what you found in the pharmacy?
Sherry: Yes, and a lot of times these patients also come to us with other sensitivities that make them very concerned about the medication, so one of the things that we like to make sure is, we keep it simple, make sure that the tablet is as clean as it can be with no allergens in it, no fillers that would cause any sensitivities, because we do see that a lot with our patients. They have a lot of sensitivities. So yes, very low dose, ultra low dose if you want to call it that, and a slow taper. That's the other thing: a lot of times, especially more at the beginning when we were beginning to use this years ago, we would see where the prescription would be written “Take one dose for a week and then increase for a week and then increase for a week”. We typically go a little bit longer, a little bit slower taper if you will.
Linda: In your pharmacy, you were saying about being careful of fillers. etc. What different dosage forms do you compound?
Sherry: We do a liquid dosage form for patients that need a very low dose. It can be done as a drop under the tongue, is what we normally recommend. We have immediate release tablets We have an immediate release flex dose tablets that I described earlier that can be broken into quarters. And we also do capsules. We still have some call for capsules. There are patients who, for whatever reason, don't like the tablets. And where the oral dosage forms are fairly small, the tablets are approximately the size of a mini-M&M, and the capsules are about that size around, but maybe a quarter of an inch long. We try to keep them small, because we do have patients that will complain of trouble swallowing.
Linda: You do a cream or….
Sherry: Sorry, I missed that. Yes, for our derm patients we do topicals for different skin conditions. The other thing that we have recently been requested to make is topical formulations for veterinary patients. Not so much for cats because they just lick everywhere, but dogs, if they have dermatitis or allergic reactions, we have found that topical LDN is very helpful. We also had a request for an LDN vaginal product, only once, but we have done that as well.
Linda: What about eye drops and nasal spray?
Sherry: I have not had a request for that. We do a lot of different nasal sprays, but we have not done LDN in a nasal spray to my knowledge. Eye drops get a little bit tricky in the US, because of our regulations. Oftentimes when you're making a sterile product, which an eye drop would be a sterile product, the expiration dates are so short that it makes it almost impossible to be a reasonable therapy - you can't have the patient come back every three days for a new bottle of eye drops - without a bunch of stability studies, which then shoots the cost of the preparation up so much the patient can't afford it. So eye drops do get a little sticky in terms of nothing having to do with the ingredient, more to do with the regulations.
Linda: There are pharmacies that do eye drops for dry eye and Sjogren’s syndrome. But I've also been told that the nasal spray helps with dry eye as well.
Sherry: That is a very interesting concept, because there's just been a drug released on the commercial market in the US that is a nasal spray. Its indication is for dry eye. So a very interesting thought, yeah. We may have to talk to some of our ophthalmologists around the area, because we do have a lot of dry eye. All of us are in front of our computers way too long now, right. Yeah, especially the last couple of years. So dry eye has really gone through the roof. Excellent tip. I'm gonna take that and talk to a couple of our ophthalmologists around the area.
Linda: Well let me know how it gets on. I do have dry eye, and I might have to have eye surgery, which is scaring me, but I would love to get hold of some nasal spray. So next time I'm in the US, I'll probably visit a doctor and see if I can have a prescription for dry eye. That would be here quite good.
Sherry: Yes, yeah, that's a that's a very interesting thought. Yeah.
Linda: Even though it's not actually directly in your eye, when you squirt it up your nose or passage, of course it's getting up into the inside, isn't it? So it makes sense to me that it would potentially work quite well.
Sherry: Yes, yep that does make sense.
Linda: Well it's been wonderful speaking with you today Sherry, and I can't wait till next time.
Sherry: Oh, thank you so much. I hope you have a wonderful day and I appreciate being able to catch up with you.
Linda: Any questions or comments you may have please email me Linda Linda at ldnrt.org. I look forward to hearing from you. Thank you for joining us today we really appreciated your company until next time stay safe and keep well
The LDN 3: To Purchase with discounts before 1st September 2022 Go to ldnresearchtrust.org/ldn-book-3 for full details
LDN Webinar Presentation 18 May 2022: Dr Mathewson - LDN as supportive care for Oncology and Autoimmune patients: Case Reviews
Sponsored by Innovative Compounding Pharmacy https://icpfolsom.com/
LDN Webinar Presentation 18 May 2022: Dr Sato-Re - How and why I prescribe LDN in my integrative and general practice
Sponsored by Innovative Compounding Pharmacy https://icpfolsom.com/
LDN Webinar 18 May 2022 (LDN; low dose naltrexone)
LDN Questions Answered Live by
Pharmacist Dr Masoud Rashidi - LDN Specialist
Dr Sato-Re
Dr Mathewson
Sponsored by Innovative Compounding Pharmacy icpfolsom.com
Dr Sajad Zalzala, LDN Radio Show February 2022 (LDN, low dose naltrexone)
Dr. Sajad Zalzala is conducting very interesting trials on his patients utilizing Low Dose Naltrexone (LDN). He is collecting data on the various conditions LDN is helpful for, and what various dosages can be best in each case. His main area of interest is aging and longevity, and he feels LDN can be a big player in dealing with the many autoimmune conditions that shorten our life span. He is measuring the success of LDN on each condition and the expected duration to see results. He is excited with his results to date and will publish his findings in the future.
Review by Ken Bruce
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.
Dr Sarah Zielsdorf, LDN Radio Show 2016 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Dr Sarah Zielsdorf shares her Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.
Dr Sarah Zielsdorf is a relatively new prescriber of Low Dose Naltrexone (LDN), yet her knowledge of autoimmune diseases etc. is certainly convincing throughout this interview.
Having Hashimoto's and Hypothyroidism gives her the perspective of the patient. Her “extra" education in Functional, Integrative, and Holistic medicines makes her very qualified to treat a host of illnesses. She prescribes LDN, but does thorough tests to arrive at the best combination of treatments including diet, exercise, detox, and proper medications.
This is a summary of Dr Sarah Zielsdorf’s interview. Please listen to the rest of Dr Zielsdorf’s story by clicking on the video above.
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.