LDN Video Interviews and Presentations

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

They are also on our    Vimeo Channel    and    YouTube Channel

Pharmicist Dr Brad Martin and Zana Elliott, NP on Low Dose Naltrexone, LDN Radio Show 08 Aug 2017 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Brad Martin is a pharmacist who compounds Low Dose Naltrexone (LDN) in capsules and topical creams. He describes the many uses for LDN and has witnessed excellent results, including better sleep, pain relief, healthier skin and hair. It's even effective in curbing addictions like smoking and gambling.

Zana Elliot, NP treats pretty well all autoimmune conditions with LDN and has observed fairly rapid relief of chronic pain in many cases. She takes LDN herself for her thyroid condition, but observed may unexpected benefits as well.

In this interview both speakers combine their knowledge to provide in-depth explanations as to why LDN is so successful.

This is a summary of Dr Brad Martin and Zana Elliott’s interview. Please listen to the rest of their stories by clicking on the video above.

Dr Akbar Khan on Cancer, LDN Radio Show (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today we're joined by Dr Akbar Khan, who works with LDN and cancer in his Medicor Cancer Centres. He has treated over 2000 patients with LDN, so we are very interested in hearing what he has to say.

Dr Akbar Khan: Thank you very much for having me on the show.

Linda Elsegood: Could you tell us when you first heard about LDN?

Dr Akbar Khan: Well, I first heard about LDN about nine years ago, and that was through some discussion on the internet, in which a patient pointed out to me there were some alternative medicine forums, and I guess people were discussing LDN and other non-traditional cancer therapies, and so a patient pointed out that there's a drug that you should look into and it's called LDN, and the patient was interested in trying it. So that's really how I got acquainted with LDN.

Linda Elsegood: And how soon after hearing about it did you start prescribing?

Dr Akbar Khan: Well, so I had to do a little bit of research on it, and then I found Dr Bihari and Dr Gluck's website, which is ldninfo.org and from there I learned about how LDN was effective in cancer treatment and autoimmune disease.

And you know, basically, because our clinic was dealing with just cancer, it was very interesting for me that there is an option for a very simple and cheap medicine that has almost no side effects, that could effectively treat cancer. So, I did do some research, and I found some publications on LDN.

Dr Berkson, for example, published case reports of pancreatic cancer, which is one of the most difficult cancers that was successfully treated with LDN. Then I found out the type of dosing that was being used, and so at that point, we started using it. It took just a few months, and then after that research was completed, we started using the drug.

Linda Elsegood: Do you use LDN as a standalone treatment or part of a protocol?

Dr Akbar Khan: So, it can actually be used as a standalone treatment. We have used it for patients who have no other treatment options, and then they start searching for other treatment options, and then they find us. In those types of situations, we use LDN as a standalone. It is actually effective, and what we find is it's more effective in patients that have lower amounts of cancer in the body; if it's an earlier stage, then it's also more effective, but it can actually be used as a standalone therapy. We have many cases of patients successfully treated like that. It can also be used as an adjunctive treatment, which is in combination with chemotherapy, for example, and there is a new publication which I know you're aware of that illustrates exactly how that can be done.

Linda Elsegood: And from the 2000 plus cases that you have treated with cancer, do you have any examples that stand out?

Dr Akbar Khan: Oh yes, for sure. We've treated well over 2000 patients with non-traditional treatments, including LDN. We use other gentle medicines as well, and the most notable example would be a case that we actually published; it's a fellow with tongue cancer.

So, I'm just going to get some of the details here for you. He was about 60 years old when we began treating him, and he had a rare type of cancer of the tongue, which is called adenoid cystic. It was probably about an inch and a half in size and had not spread at the time, but it was large enough that his doctor was concerned, and he was told to have radical surgery in an attempt to cure it.

So the standard treatment involved for this type of cancer was the removal of the entire tongue. Also, because it was close to the voice box or the larynx, the surgeon had said they wanted to remove the entire voice box and remove all the lymph nodes that were in the region. So major surgery of the mouth and of the neck, with a very significant reduction of quality of life, like, you know, he would not be able to taste, he would not be able to speak after the surgery, and so this was an attempt to cure this cancer. So, this fellow was very upset and unhappy about the proposed treatment, and he did ask for a second opinion from another specialist. I believe the other specialist also said they could do surgery, but maybe a more limited surgery, and then they did offer some chemotherapy and radiation as well.

So, none of these options was acceptable to this fellow, and he ended up finding us somehow; I believe on the internet. When he came to us, he said he wanted a treatment that had zero side effects. So, I told him, well, of course, there's no such thing as zero side effects, but probably LDN is the closest thing to that. It does have very few side effects. So, we offered him that and he was very interested. He did start LDN, and we also added some vitamin D because it has some anticancer effects as well; it does improve immune function also, and so what happened when he started LDN and vitamin D the mass stop growing, and then over a period of a few months, it actually started to reduce, and he didn't contact me for a while.

He kept up with his LDN, and then after two years he just mysteriously appeared and sent me his MRI scan report. He had just had a new scan and it said the cancer was completely gone. So naturally, you know, we were quite excited, and this fellow is now at over five years cancer-free.

His scans are clear. He just had a visit with his specialist. He inspected his entire mouth, and there's no sign of cancer and so that is, I would say, by far the most notable case in my experience with LDN.

Linda Elsegood: Wow. That's totally amazing, isn't it? 

Dr Akbar Khan: It is stunning yes.

Linda Elsegood: Exactly. Have you had any other remarkable results that you've seen? Maybe not quite as stunning.

Dr Akbar Khan: Yes, we have. I mean, he's definitely one of the best, but we have other results, which are more real world, that is, I expect that cancer might reduce or it might stabilize; those are more common responses that we see. You know, we use it for almost any cancer type. Other good cases: a bladder cancer case that I used it for recently; a 65-year-old fellow with a fairly aggressive type of bladder cancer. It's called high grade, which is when they look under the microscope, they see the appearance of the cells, and they appear quite aggressive. And this fellow is treated with standard treatment, which is to remove the bladder tumour by a surgical procedure, and then to burn the area where the tumour was located, to try to kill off as many cells as possible. And so, his tumour recurred, and it was invading into the muscle wall of the bladder. At that point it gets concerning that it may be starting to spread, so he was told to have his bladder removed; complete removal of the bladder, and then a procedure to collect the urine in a loop of bowel that's inserted into a hole in the wall of the abdomen, so it collects urine into a bag from this, it's called an ileal conduit, that's the medical name for it, but basically the removal of the bladder and the urine drains into a bag that's attached to your abdomen, and he was obviously not too happy with this.

So, he came to us and said, look, do I have any other options? We chose LDN. He did have a little bit of insomnia with it, so he got a sleeping pill to go with that. He also took one course of immunotherapy called BCG, which is a bacteria that gets injected into the bladder.

With that and LDN, after four months of treatment, there was absolutely no evidence of cancer. He was cancer-free, I think, for up to about seven years. It was when we had the last contact with this fellow. So again, very, very dramatic results. In this case, it was combined with an immunotherapy called BCG, but he received only one course of BCG, which is really very limited and is not expected to be curative when you have cancer that's invading into the muscle wall of the bladder. So, I'm sure the LDN contributed to that quite significantly.

Linda Elsegood: I know people always ask these questions and it's probably not that easy to answer, but how long does it take being on LDN before you notice that it's doing something for your patients?

Dr Akbar Khan: Well, LDN, it is, as you know, a gentler drug. You cannot compare it to chemo. If you do chemotherapy for cancer, typically that's effective very quickly, within weeks, whereas for LDN, just because of the mechanism; the way that it works, we usually say, give it about three months to judge if it's effective or not for your case.

With LDN, we want to give it to a patient that has cancer where you have that kind of time. You have the luxury of some time to allow treatment to work. You know, if it's slow-growing cancer, or if they really have no other option, then that's appropriate to use LDN. So yeah, we recommend at least about three months to give it a good try.

Linda Elsegood: Okay, right. Well, we're back and I would like to ask a question first before we start taking callers. I had a message from a lady called Tracy, who asked if LDN helps with chronic leukaemia.

Dr Akbar Khan: Yes, we have used LDN for chronic leukaemia. She's probably talking about chronic lymphocytic leukaemia; that's the most common type of chronic leukaemia. We have used it for that, and yes, it is effective for that type of cancer.

Linda Elsegood: How would they go about approaching a doctor to prescribe LDN?

Dr Akbar Khan: Okay, so basically, I think what I would recommend is that they present the doctor with some published research on LDN, and probably the easiest way is to go onto the LDN research trust website, and they can find some links through there.

They could go on our website as well, where we have links to different studies on LDN, or they could even email me if they need some assistance. You can provide them Linda with my email, I'm happy to take direct emails from patients, but I think that the best approach is really to introduce LDN by presenting some published research to the physician. Otherwise, they're going to be very sceptical of the potential benefits of LDN. When you think about LDN when you know how it works, and what is normally used for, you would not connect it with cancer treatment. So, I think that the patients will encounter some resistance initially from their physicians, and so it’s really important to arm yourself with the scientific information first.

Linda Elsegood: And I have to say, you do an amazing job as one of our medical advisors, and I know you're always happy to help doctors who have questions, and want to know about cancer and LDN, and that is so kind of you to take the time to help and support people wherever they are. It's very good. Thank you very much.

Dr Akbar Khan: No problem, and it’s a pleasure to help.

Linda Elsegood: Thank you. So now we have Robyn who has got a question for you about Hodgkin's lymphoma. Would you like to ask Dr Khan your question, Robyn?

Robyn: Yes. Thank you. Yes, I'm wondering if you've had any experience with LDN and Hodgkin lymphoma specifically, there's like five kinds of Hodgkin, and four are classic, but there's a fifth one that's a bit rarer called nodular lymphocyte-predominant Hodgkin's lymphoma, which acts a little bit more like non-Hodgkin's in that it's slow-growing. I guess I'm curious what your experience has been with either non-Hodgkin's, you know for slow-growing cancers, for that specific Hodgkin's.

Dr Akbar Khan: Okay. So, we do use LDN for lymphoma. In our practice, we mainly see non-Hodgkin's lymphoma. Probably because the oncologists treat the Hodgkin's cases with more of curative intent, but that's that. You can use LDN for both Hodgkin's and non-Hodgkin's lymphoma.

We have used it successfully, mainly for non-Hodgkin's, as I say, but by the mechanism of action of LDN, it is considered a very broad sort of cancer treatment. It doesn't matter so much what subtype of lymphoma you have, or what subtype of leukaemia you have, you can try it, and especially for slow-growing cancer, it's considered safe to try.

Especially if there's no other treatment option at that time, then definitely it's appropriate. If there's a conventional treatment being offered, then you may want to combine it initially, but for slow-growing cancer, it's actually quite safe to try.

Robyn: Great. I appreciate it. I think it sounds like something he should try. Thank you for taking my call. Bye-bye.

Linda Elsegood: Bye-bye. Thank you. Would you like to reply to some of the emails that were sent in Akbar?

Dr Akbar Khan: Oh, for sure. Yeah. So, I'm, I have a message here from Jill, which says ‘I've been reading about theories that some cancers might actually be a form of autoimmune disease because inflammation helps feed the tumour.

Can I share any insights or explain?’

So, there is a connection between autoimmune disease and cancer, and the connection is that chronic inflammation in the body does predispose to forming cancer. So, there are many examples of that; for example, if you have a chronic infection of, let's say the liver, like chronic hepatitis, then you are more at risk of getting liver cancer.

If you have chronic acid reflux, like acid backing up from the stomach into the oesophagus, that creates inflammation. That inflammation can result in cancer of the oesophagus. If you have an immune disease, like Crohn's or Colitis, that also creates chronic inflammation and long-term inflammation of the bowels and then you have a high risk of colon cancer. So there definitely is a connection, and on that basis, LDN can be used as cancer prevention. Now we are using it in our practice for that, even though it has not been formally studied. At this point, it's more theoretical, and it makes good sense that there's solid science that supports the use of LDN as cancer prevention in the case of autoimmune disease.

However, as I said, specific research has not been done. It's a very complicated study that would have to be done. It would take about probably about 15 to 20 years to conduct such a study. So, you know, we really don't have time to wait that long for this kind of study, and the funding for that study is also not in place, so we are actually going ahead and using LDN for cancer prevention in the case of autoimmune disease,

Linda Elsegood: What would the protocol be? I mean, would it be part of several things that you would do for prevention, or would it just be purely LDN?

Dr Akbar Khan: We would probably do several things. I think you know, LDN is definitely a useful component. We also believe in using high doses of vitamin D; that's well researched now. We believe that diet can definitely play a role; physical activity, and there are other supplements that can often be useful for cancer prevention. So, we usually do a comprehensive program for our patients. It's quite simple and very, very cost-effective as well. I believe it can be quite powerful. Would you like me to go on to do further questions?

Linda Elsegood: Before you go any further; it was interesting what you said about diet. We had a program last week on diet and exercise, supplements and so on, but what would be the ultimate diet for somebody who had got cancer in the family, and was taking steps as a preventative, alongside LDN? What kind of diet would you recommend?

Dr Akbar Khan: I think there are a few things. So, I'm not the expert on diet, but, one of the most important things is a diet that's low in processed sugars, and probably low in carbohydrates in general. That has been shown to be detrimental in cancer patients because cancer actually uses glucose or sugar as the main energy source and having a diet that's high in glucose, well first of all, if you have cancer, that can be a problem, that has been studied already if you're consuming a lot of sugar then it increases your blood sugar levels and that can drive cancer growth. Whereas prevention, if you take a diet that's high in simple sugars than processed sugars, that one is it can increase your glucose levels in the blood, but then your body does combat that with insulin secretion. So, the other thing is a high insulin level can also tend to drive cancer growth, so we recommend for that reason, a diet low in carbohydrates, and especially those that raise the blood sugar.

I mean, the diet's a very complex topic and really I'm not the expert, but this is one of the key areas, and the other thing that's very important now is to look at the quality of the foods that we're getting because there are many chemicals that are added to the foods. There are genetically modified foods that we're eating and they also have the potential to cause inflammation, which can lead to cancer as well.

So I think if the listener wants a more detailed explanation, they're going to have to consult with your other experts because that's not my area of expertise, but these are some of the basic points that we emphasize to our patients.

Linda Elsegood: A friend of mine, Sammy Jo, has sent a question and she says

that it's a great show and to thank you very much. She said she has a relative with mild breast cancer who followed her advice to find an integrative oncologist to try LDN. Her question to you is, out of all the patients you've treated, how many had similar breast cancers and what was the outcomes?

Dr Akbar Khan: Yeah. So what was the type of breast cancer that you said?

Linda Elsegood: It just said mild breast cancer.

Dr Akbar Khan: Oh, okay. Yeah, so actually it’s very interesting. We just treated a lady, she's about 50 years old, and she had a very aggressive type of breast cancer, which is called triple-negative. So, it means it has no estrogen receptors, no progesterone receptors, and no, HER2 receptors. Those are proteins on the cell surface that are tested when the cancer is removed at surgery, and they help guide the treatment. So, if it's triple negative it has none of those receptors; what that means is it doesn't respond to anti-estrogen drugs like Tamoxifen, and cancer also does not respond to one of the newer targeted drugs like Herceptin.

So, it has very limited treatment options. Basically, in conventional treatment, it’s limited to chemotherapy. So, this lady had surgery done and then she did have residual cancer in the body, which we detected through the blood, and we treated it with LDN. You know, typically for this type of aggressive cancer, I would not expect LDN to really be effective, however; it reduced her cancer and kept it under control for over a year, and then it did start to grow again. I was very impressed; I totally did not expect any results with LDN in her case, but the reason we chose LDN was that she wanted a very gentle therapy that had almost no side effects, and she was scared to take other drugs at the time. So, to me, that's very impressive; to treat a triple-negative for over a year, and we could prove that cancer actually had reduced and was under control for that time. I was very impressed.

Linda Elsegood: Yes. If you could read out another question that would be great.

Dr Akbar Khan: Sure. So, we have a question from Lynn, which says, ‘for 18 months I have been treated for low-grade bladder cancer—initially resected, but it has recurred a couple of times; very small and been treated with diathermy. So, I am told if it recurs, I will need local chemo to the bladder, which I want to avoid. I take 1.5 milligrams of LDN for autoimmune disease and am feeling very well. I take vitamins under naturopath supervision. Can you offer any advice?’

So,1.5 milligrams of LDN may be effective, but it may not be enough. You know, for our patients for cancer, we usually try to get them up to at least 3, up to 4 or 4.5 milligrams of LDN every day. I think that, you know, for somebody who has bladder cancer, who is taking LDN, and despite the LDN at 1.5 milligrams per day, that the cancer is recurring, then I think the LDN dose needs to be increased. So that's the first thing I would do if this was my patient. Then the second thing is, well, she's already under the care of a naturopath, so that's very good because then they will be combining other vitamins and probably other supplements that have anti-cancer activity.

And so then the other thing is, you know, we can look at other drugs which are sometimes more powerful than LDN, drugs like maybe DCA or maybe, like in the case I mentioned before, LDN combined with an immune therapy called BCG. You know, she could definitely consider trying that, but she'd have to speak to her urologist about that, and then...what would you like me to go on to? Any further questions?

Linda Elsegood: Before you go onto another question that just occurred to me. Many people say when they have cancer, what dose should they start on? And what should they try and work up to? And you did say 3 or 4.5, but what does do you normally start the patient on?

Dr Akbar Khan: Okay, so we usually start the patient on...for adult patients we start at 2 milligrams because there is quite a variability in what their responses are going to be to LDN, and what their side effects are going to be. So, we use, this is just my preference, we use one-milligram capsules because it’s convenient.

We start them with two capsules at bedtime, and then we gradually increase up to 3 and then up to 4 and to me, you know, I know the standard dose is 4.5 between 4 and 4.5 is really not a huge difference. So, we just target 4 milligrams as the highest dose that we would use. We start at 3, and we work our way up to 4, and along the way, some people have a lot of sleep disturbance, maybe at 3 milligrams, so we'd tell them, hold the 3 and then see if that settles down, and then if they eventually start to settle down, their body gets used to the LDN, then we would probably try one more time to step it up. Then if they get a lot of side effects, then we'll go back to 3, but generally, my target dose would be 4.

Linda Elsegood: And have you noticed any other side effects other than sleep disturbance?

Dr Akbar Khan: Well, usually it's an asleep disturbance or sometimes vivid dreams. They report that they remember their dreams; they're very intense. Other than that, really nothing significant. I had a couple of patients report some strange side effects, which to me did not seem like LDN, but one patient reported some ringing in her ears and it seemed to resolve after she stopped the LDN, but to me, that didn't really seem like it was LDN. It’s probably coincidental.I don't think it was really LDN side effects, then there were other patients that report other things, but they're not consistent. So, I really don't think they're LDN side effects. So, pretty much sleep disturbance and dreams; I really don't see much else.

Linda Elsegood: And one another question that a lady asked us was when you start LDN for cancer, do you have to continue taking it?

Dr Akbar Khan: Yes, you have to continue taking it, you know unless cancer disappears. If it disappears like that tongue cancer patient, then, you know, theoretically you could try coming off it, but then you have to follow very closely because it's possible that the cancer is in remission, but there's still some microscopic disease.

In other words, there are still some cells there, and the LDN has suppressed their growth and killed a number of the cells, but there could still be a small amount of cancer that's not detectable. So generally I do recommend people continue, however, if they do achieve a full remission at some point, you know, they can consider coming off the LDN with very close monitoring to make sure that cancer does not come back.

Linda Elsegood: If you have time for another question, that'll be good.

Dr Akbar Khan: Yes. We have a question here from Carolyn, and she says, ‘I was diagnosed with pancreatic cancer stage two B in October. I've taken Tramadol 50 milligrams for pain since September. My clinic wants me on LDN, so I have been slowly weaning off Tramadol using ibuprofen and CBD topical cream and oral sprays’. The CBD is a marijuana preparation for those who are not aware of that. ‘I take Tramadol, once every eight hours, and now the pain is starting to break through more often. What else can I use for pain, so that I can finish tapering off the Tramadol, with the intent to go on LDN?’

Okay. So, this is a very important question. One of the reasons that you cannot use LDN is if you're taking a pain medication which is of the morphine family, the opiate family, that includes Tramadol, morphine, codeine, oxycodone, hydromorphone, fentanyl, and those class of drugs because LDN will interfere with those drugs.

It will either cause more pain, or it may cause a full-blown withdrawal reaction, which consists of pain, vomiting, abdominal cramps, or sweats, and it’s really very unpleasant. So, anybody taking a chronic, long-acting painkiller of the opiate family, they really should not be on LDN.

They should not try LDN. So, since she is on a short-acting opiate painkiller Tramadol, she's trying to wean off that, and now the pain is breaking through. So, basically the point is that we need to transition her over to a different type of pain medicine that's not related to a Tramadol or morphine or Codeine.

So, in the case of pancreatic cancer, there is, based on the location of the tumour, a lot of nerves in the area of the pancreas and the tumour often pinches or invades those nerves, and that creates a type of pain that can be resistant to Tramadol or other drugs in the opiate family.

What I use for this type of pain is an anti-seizure drug. There's a couple of choices. I prefer a drug called pregabalin; the trade name for that is Lyrica. There's another older drug, which is called carbamazepine; trade name Tegretol, which is also highly effective. The older drug, the Tegretol has more drug interactions, so I tend to use the newer drug called pregabalin. I find that highly effective in patients with pains related to pancreatic cancer. Since that is a non-opiate drug, it is safe to combine with LDN, and LDN will not interfere with the action of that drug. So for Carolyn, and I would say, please speak to your doctor and go over the pain, the nature of the pain, explain how it feels and where it is, and if the doctor feels that it is nerve pain, it's called neuropathic pain, then ask the doctor to consider using a drug like pregabalin or carbamazepine.

Hopefully, that will successfully allow you to come off the Tramadol completely, and then you can be prescribed LDN, and it will be completely safe.

Linda Elsegood: Thank you. And you had spoken there about medical marijuana. Do you use that in your practice? Is it something you use in Canada?

Dr Akbar Khan: Yes, actually we do. There probably has been a lot of international news about Canada legalizing marijuana, so it's coming, so it is available now, and I think that because people know the law is coming, it's already widely available, and so we actually do use it. Since I'm not an expert on the cannabis oils, I refer to naturopathic doctors who are experts, and one of our own naturopathic doctors in the office is training, and he's learning about it, so we do prescribe it. In fact, the first case that I saw that sort of made me into a believer in using cannabis oils for cancer treatment was a very interesting fellow with bladder cancer stage four. You know, multiple areas of tumour spread into his abdomen, and he was treated with cannabis oil only. He came to us for consultation, we offered some other treatments to be combined. He declined those, and he said, no, let me kind of continue on the cannabis oil, for now, I want to see if it's working. That was his remark to us. We said, okay, no problem. We can do some monitoring of your cancer; we'll get some scans done. So, in fact, we scanned him when he first came to us, and then we re-scanned him about two or three months later, and we found that tumour had actually shrunk, and so that was the first case that really prompted me to have more interest in using cannabis oil as an actual cancer treatment.

You know, we documented very clearly tumour shrinkage in this fellow with stage four cancer using just cannabis oil treatment on its own. So, based on that, I'm more interested in it. Also, there is a naturopathic doctor in the Toronto area who published the world's first case of a child with leukaemia treated with cannabis oil successfully.

He showed very clearly the reduction in the cancer cells in the blood using the cannabis oil, and so that case is now published, and that's further evidence that cannabis oil can be successfully used as a cancer therapy. 

Linda Elsegood: That’s really interesting. Thank you. We'll just have another quick break, and if anybody has got any more questions, please do call in or email me linda@ldnrt.org.  We'll be back in just a minute.

The LDN research trust is very proud of the LDN book, which was launched at the LDN 2016 conference in Orlando, and has been a great success, not only for the medical profession but for patients wanting to learn more about low dose naltrexone. Full details can be found on the home page of the LDN Research Trust. Discounts are available on bulk orders of the book, which is ten or more. For details, email me, linda@ldnrt.org telling me how many copies you wish and where you live. I will then be able to get Chelsea Green Publishing to contact you.

Medicore Cancer Centres in Toronto, Canada are at the forefront of cancer prevention and treatment. They have developed numerous inhibitive programs backed by science with a goal to bring advanced cancer strategies to you. Learn more about Medical's approach and therapies@medicorecancer.com. Call +1 416-227-0037.

Linda Elsegood: Okay, thank you. So, do you have any other remarkable stories you could share with us Akbar? 

Dr Akbar Khan: Definitely. Yeah, sure. So, I can tell you about a patient with lymphoma. There's a lady in our practice, mid-fifties with the non-Hodgkin's lymphoma. And she herself is a homoeopathic practitioner; doesn't believe in taking drugs and definitely not taking chemotherapy.

The standard treatment for this type of lymphoma would be chemotherapy. She approached us and wanted to start a very gentle treatment. And so again, we thought of LDN. It's really the most gentle drug treatment that I have for cancer. So, we started her on LDN, and she worked up to about 4 milligrams a day at bedtime. In addition, our naturopathic doctor gave her some glutathione intravenously, which is a natural product, and then she did have some sleep disturbance. So, for sleep disturbance, we added a Magnolia tree extract, which contains, the natural chemical called honokiol. The trade name of this particular product is HonoPure, so it has 500 milligrams of honokiol

This natural product is actually excellent for sleep. It helps calm anxiety, and it has anti-cancer effects; multiple mechanisms of an anticancer effect that are defined by published research. So, we gave her that as a sleep aid, but also as a booster for the LDN. Her initial imaging, her ultrasound, showed extensive disease in her abdomen; deep in the abdomen where you typically see a non-Hodgkin's lymphoma which is called a retroperitoneal enlargement of lymph nodes, so that was measured and we continued the LDN, and then we repeated the ultrasound after the number of months. The largest tumour initially was about 3.4 centimetres, so, I don't know what's that, about an inch and a half, I guess for your UK listeners. Gradually it reduced to about half that size over a period of one year. The patient felt well, her appetite improved, and so she continued taking LDN, and she continued her own homoeopathic and natural regime on top of that. She actually started cutting back the LDN, I think, more through laziness, you know, but also she was taking her own supplements on top of that, but she's alive and well at this point; I think it's about four to five years. So, clearly, you know, in her case, at least at the beginning of therapy, we demonstrate that the LDN, with potentially a boost from this natural product, called honokiol was very effective for her non-Hodgkin's lymphoma. Again, a very good case, you know, with minimal side effects. I think that's probably one of the most remarkable things about LDN if it happens to work for your cancer, it is truly remarkable, because of the minimal frequency of side effects, and also the trivial nature of those side effects.

It is so dramatically different than almost all traditional cancer therapies, drug therapies, I'm talking about like chemotherapy, you know, I mean, I think most people are well aware that chemotherapy has very severe side effects, including death because it can severely depress the immune system and it puts you at risk for infection.

People die every day from infection caused by chemotherapy. This is well known, and one of the accepted risks of chemotherapy, yet nobody dies from taking LDN, and we have people with cancers that shrink and stabilize and occasionally go into full remission using LDN.

So, I'm really happy to be here on the show and getting the word out because I want doctors to understand that this is a potential therapy that can be part of their arsenal against cancer, and not every patient needs to go and take a traditional toxic therapy, especially those that are risk-averse, and those that understand the risks and benefits of therapy like LDN, which is unapproved, yet still has extensive research that supports it.

Linda Elsegood: And I have another question for you. It says, would you recommend LDN for patients with a history of basal cell carcinoma and family history of melanoma? 

Dr Akbar Khan: That's a very interesting one. You know, basal cell carcinoma is a type of skin cancer that is often cured by surgery, and it does not really spread through the body. It's actually quite rare for that cancer to spread, so it's non-aggressive cancer. If it's caught early it can be removed surgically, unusually it's cured, so we don't tend to get patients with basal cell carcinoma in our practice. They're usually referred to the plastic surgeon to have these removed, so I can't say that I personally have experienced treating that cancer type, however; due to the nature of that cancer it tends to be slow-growing, and it does give you the opportunity to treat with LDN. So, if there's a patient who's interested in treating that cancer with LDN, I would say speak to your doctor, and I think it is worthwhile to give it a try, especially for anybody who has recurrent basal cell carcinoma. If you have new cancers continuing to pop up, I think LDN has a role in prevention, as well as treatment, and it can reduce the need for surgery if, if it does in fact work, and I believe it will work in a percentage of cases. So, I do think it's worthwhile treating. In addition, if there's a family history of melanoma, then the LDN can be used as part of a cancer prevention program.

I do also recommend that the patient speaks to the doctor about using vitamin D. I recommend high doses ranging from 5,000 units a day, up to even 15,000 units a day with a regular blood monitoring to make sure that you're at the correct blood levels. And then also to make sure there are no side effects from the high dose vitamin D, like a high calcium level in the blood, which is a rare side effect. I do recommend speaking to the doctor about LDN, I think it's a very good choice.

Linda Elsegood: And I have a question here from Dennis for you, and I apologize, I probably won't pull out some of these words correctly. He says, ‘my wife has recently been treated for bilateral ILC stage one, grade two, lumpectomy surgery, clear margins.

BRAC therapy and two rounds of TC chemo. She stopped early due to severe neutropenia’.

Dr Akbar Khan: Okay. Yes. All right. So, that's neutropenia, which means low white cell count. This is a patient with cancer of both breasts. An ILC is, I'm assuming, that's invasive lobular carcinoma, which is one of the types of breast cancer.

The patient's having side effects from chemotherapy, which basically amounts to severe immune suppression. So, she stopped and chemotherapy, so, I think that's a good opportunity to get onto LDN for a couple of reasons. One is obviously because as we've talked about, LDN can be an effective treatment for residual microscopic disease. That is microscopic cancer that’s present in her body, and also it can be an immune modulator; it can enhance her natural immunity, and so with the low white cell count, this is probably a good time to get on the LDN to boost your immune system. This is why she should look into using vitamin D, which is probably also an important part of improving her immune function, and you never know, she may be deficient in vitamin D, which makes it even more important. So, she should have her vitamin D blood level checked by her physician and then take the appropriate dose to bring the vitamin D level up into the higher normal end of the range; that's usually our target in our practice, and we find that's quite safe.  You know there's a theoretic concern of overdosing on vitamin D and causing a high blood calcium level and leeching calcium out of your bones, and I can tell this nurse that we monitor everybody with routine blood tests, and I have not seen that once yet in my practice in, I would say probably, well, first of all, in hundreds of patients treated with high dose vitamin D over a period of about, I would say now less than five years. So vitamin D supplementation is very safe, I think, very important to go along with LDN, but you have to do it correctly; you have to monitor the blood levels and make sure there are no side effects from that.

Linda Elsegood: And he did go on to say that she also has Hashimoto's disease, and had bilateral Thyroidectomy in 2014. Would the use of LDM possibly be preventative for a reoccurrence of cancer as well as helping with the Hashimoto's?

Dr Akbar Khan: Yes, so actually the LDN can prevent recurrence by controlling a microscopic residual cancer that's present in the body. You know, we've shown that, with the blood tests, in which we measure cancer cells that are floating in the blood.

This is not a standard test that most oncologists will be doing, but there are labs in the United States and in Germany that are doing these tests. We happen to use a lab in Germany, but there are other labs too. I'm sure in the UK there are labs that are doing the same type of testing. So, we measure cancer cells floating in the blood, and we can show that a treatment is effective or not effective, even though there's no obvious residual cancer showing on a scan. So, in the case of somebody with a thyroid removed for thyroid cancer, you know, you can monitor with blood cancer cell count. You can also monitor with a blood marker, which is thyroglobulin, for example, in the case of thyroid cancer, and you can make sure that these blood levels are staying in the normal range, which in the case of thyroid, it should be zero. So, these are ways to monitor that the LDN is actually effective, but the answer is yes, it can be used in the case of a patient with thyroid cancer that's been removed and she wants to prevent a recurrence.

Linda Elsegood: Now we have one last question, and I'm hoping that you'll be able to answer it. It's very controversial. You probably remember from the last three conferences I'm sure, that it's a question that came up Tramadol. Now, there are some doctors who, and pharmacists, that don't consider Tramadol as being an opiate, but say it works on, it’s a synthetic opioid, and it works on different receptors and can still be taken with LDN. I know that you just said that you get your patients off Tramadol. Do you look at Tramadol as being an opiate rather than a synthetic opioid?

Dr Akbar Khan: Well, to my knowledge, it is an opiate, but I don't happen to use a lot of Tramadol in my practice. I think if these doctors are using it and they're finding it can be used together with LDN, well that's, that's news to me.

I don't have the experience to be able to say yes or no to that. I would be very interested to know more about it, put it this way. So, as far as I know, if it's safe or not to use it with LDN, but I think maybe if you could ask  one of the other consultants from the LDN Research Trust, if they have experience using LDN together with Tramadol, that would be very interesting, and I would like to know. I think the listeners would like to know. Maybe you could post it on the research trust website. I think that would be very informative. 

Linda Elsegood: Okay. We have literally like three minutes left. Could you just give us another case study quickly?

Dr Akbar Khan: Absolutely. So, there's a question here from Jim.

He says, ‘I have friends with prostate cancer and have been treated. I have read LDN is effective for untreated prostate cancer. Is this correct? And in treated prostate cancer, would it be helpful in preventing metastasis?’ So, we do have experience with LDN and prostate cancer, and we find that it is effective.

It can stabilize, or it can reduce prostate cancer, and we measure that with a blood test called PSA; that's the most common way to monitor prostate cancer. Now, in addition to scans, and you know imaging of course. So, untreated prostate cancer, yes, we have patients who have come to us and don't want to take the standard hormone treatment because of all the side effects, you know, testosterone-blocking drugs are the standard treatment for prostate cancer, and there are numerous side effects from those treatments. So, I have successfully treated untreated prostate cancer; people who have not taken hormone treatment with LDN, and it does work, I can say that. That's very clear; we've documented that. In people who haven't been treated for prostate cancer with hormone treatment, and it's failed, Dr Bihari’s experience as reported on the LDN info website, is that the LDN is not effective for those cases. So, based on Dr Bihari’s experience we've avoided using LDN for hormone resistance cases of prostate cancer. So I can't really comment on those, because we tend not to use LDN for those cases, and whether it helps in preventing metastasizes in previously treated and hormone-resistant prostate cancers, based on Dr Bihari’s information, LDN probably should not be used in those cases, but I can't say firsthand, because we were going by Dr Bihari’s experience.

We don't want to waste the patients’ time in treating them and get a lot of failures. So, we really don't have experience with LDN in hormone-resistant prostate cancers.

Linda Elsegood: What cancers would you say of that 2000 plus that you have treated, is the most common cancer that you've seen?

Dr Akbar Khan: We see a lot of breast cancer. I think LDN is very good for breast cancer. We've treated many lymphoma cases, it's good for those. I think probably for melanoma, although I haven't used it as much for melanoma. I think again, that's a good one that seems to be responsive to immune-based therapies. So, LDN should be good for that. I've had a number of cases of bladder cancer; we've had good results. So, all of those cancers, and rare cancers too. I mean, f there's cancer that is quite rare, and so there's not a lot of research done on that particular type, and the oncologists are not sure what to use to treat that cancer. If it's slow-growing cancer, if there's time, to give it the opportunity for LDN to work, then I think that LDN is an excellent choice as something to start with, while the patient is looking around for different treatment options. So those are kind of the most common cancers that we've used it on, and we've seen some excellent results.

But in theory, it can be used for any cancer, and in my experience, it should preferably be used for cancers that are slower growing, not really for very rapidly growing cancers, because you don't have enough time to give the LDN adequate chance to work, and also for patients with low disease volumes, so not an extensive amount of cancer in the body.

Linda Elsegood: I'm going to have to stop you there. Thank you very much, and I'd like to invite you back next year and we'll talk about the conference.

Dr Akbar Khan: Thank you very much.

Linda Elsegood: Medicor Cancer Centres in Toronto, Canada, are at the forefront of cancer prevention and treatment. They have developed numerous inhibitive programs backed by science with a goal to bring advanced cancer strategies to you. Learn more about Medicor’s approach, and therapists that medical cancer.com or call +1 416-227-0037


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.

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

Linda Elsegood: I'd like to introduce Diane to the United States to takes LDN for rheumatoid arthritis. Thank you for joining me, Diane.

Diane: You're welcome. Linda beauty. A pleasure to speak with you again.

Linda Elsegood: Could you tell us when you started to notice the pain

Diane: from rheumatoid arthritis? Um, I began having daily pain with my feet, the week of labor day of 2012.

That would have been early September. I had been canning tomatoes, and I thought my feet just got sore from being on them. And I figured with some rest after a couple of weeks, the pain would go away, but it didn't. And after about six, four to six weeks, I said, this is not normal. I need to have this look at.

So I went to my doctor and talked to him, and he agreed that it's probably arthritis and he prescribed Tylenol, which was not acceptable to me. He told me it was safe to take Tylenol for the rest of my life, which it is not. And I had told him that earlier in the year, just a couple of months prior to my pain, my brother was diagnosed with rheumatoid arthritis and I was concerned that I might have the same thing.

He dismissed my concerns. I chose to seek a second opinion. Um, I went to an orthopaedic doctor who did, when I went there and told me they didn't do feet only above the ankle. So I had pain in my knee. So I had him look at that, and he diagnosed me with osteoarthritis in my knees and told me I should go see a podiatrist.

So we have one that comes into the town where I live to the hospital as an outreach clinic, I made an appointment, and I went to see him, could not confirm rheumatoid arthritis, but did do an examination and some x-rays of my feet. He did say that rheumatoid arthritis can frequently show symptoms first in the feet.

Where I had the pain, and he referred me to a rheumatologist, and you basically have to be referred to a rheumatologist in order to get an appointment. You can't just call up and make an appointment yourself. A doctor will have to refer you. So I chose to go to the doctor where my brother had once and was diagnosed, which was in Sioux Falls.

It's about 90 miles from my home. And they did blood tests and some additional x-rays there. And the day, the Monday after Thanksgiving in November, I got a phone call from the doctor confirming that I had rheumatoid arthritis. He wanted me to take methotrexate Plaquenil folic acid. And potentially prednisone as treatment.

I refused. I asked him if it would harm me to wait to start treatment for a short period of time, so I could explore alternative treatment protocols. He agreed that a short timeframe to look into alternative treatments would be okay. We felt I was fairly early in my disease and that a short delay would not unduly harm me.

So I started to do research on my own, and I prayed, and I went to the library and requested some books. One of the books I found at the library. Um, I believe it was through an interlibrary loan was honest medicine written by Julius Shopee. Hope I pronounce her last name correctly, and I read that book after a very long heartfelt prayer.

And believed once I had read through the book that I may have found the treatment I wanted to try, and that was low dose naltrexone. I didn't stop just with her book. I further researched it online. Um, I Googled it. I found some Yahoo health groups. About rheumatoid arthritis and others about taking low dose naltrexone.

All of my research confirmed for me that this was a treatment that I wanted to try as an alternative to the harmful or biologic drugs normally used to treat rheumatoid arthritis. So I went back to my primary physician who I'd been with for many, many years. And I went back first to the rheumatologist in Sioux falls and ask about getting a prescription for low dose naltrexone.

The rheumatologist refused to prescribe it. He said that it's not an approved treatment based upon the American college of rheumatology. Treatment protocols for rheumatoid arthritis. He did say I could go and try to get it from my primary physician. And if, um, I would get the prescriptions and the physician would, you know, he would monitor my treatment from that point forward.

I then went back to my primary physician and. Asked about getting the prescription for low dose naltrexone. And my primary physician refused to prescribe it. He seemed to be more concerned with lawyers and any potential liability for giving me an off label prescription for a drug that's been approved by the FDA.

I did not like that response from my physician because he seemed more concerned with malpractice and liability that in treating me the patient, I then fired my doctor and have not gone back to him since. So I looked for a physician that would prescribe the low dose naltrexone for me.

 Through online support groups on Facebook, including your group, Linda and another group.

There is a woman who keeps a list of doctors that will prescribe. I was also doing acupuncture treatment in 2012, and the acupuncturist had recommended a doctor for me. And it was the same doctor that was on the list kept by one of our angels in the group. So I made an appointment, and I went to see the doctor in January of 2013.

He prescribed the low dose naltrexone for me. I started February 1st of 2013. With a three milligram dose for two weeks. And then I bumped up to 4.5 milligrams, and I've been taking that ever since.

Linda Elsegood: And what was your experience when you first started?

Diane: Well, when I first started taking it, um, I'm not a sensitive, a person that's sensitive to meds.

Some people are, but I seem to tolerate most medications fairly well. I had positive thoughts going into it. This was my treatment of choice. Prior to starting the low dose naltrexone, my rheumatoid arthritis was getting worse. Um, the fatigue and brain fog from the disease was not well, was not good. Um, I get up in the morning, and I'd feel I say about 80 years old.

Um, I was like 50, 51 at that time and I could barely walk. To the bathroom from my bedroom, which is just across a very short hall, um, six feet or less. And it was very difficult getting out of bed in the morning and getting to the bathroom when I started taking low dose naltrexone at nighttime before bed.

I could feel little tingles in my legs, almost like when your legs are waking up from being asleep. Um, If anybody, you know how it goes. If you sat on your leg too long or something, your leg will go to sleep cause of blood flows, net going. And when you get up in the blood flow is restored. You get a sharp tingling sensation in your leg.

As your blood flow is getting back and your nerve endings are waking up and so on. It wasn't that severe, that tingling I felt, but I could tell that something was happening. Um, by the time I jumped up to the 4.5-milligram dosage in two weeks, I felt a lot more like myself. Um, being a 50, 51-year-old woman, instead of 80 years old, I had more energy.

Um, the pain in my feet was less, it wasn't totally gone, but it was a lot more comfortable to walk.

Linda Elsegood: If you had to rate your quality of life before you started LDN on a score of one to 10 and 10 being the highest, what would it have been?

Diane: Well, I was still able to walk,  um, the rheumatoid arthritis was mainly in my feet, so I would probably say maybe a five at that 0.5 or six. The fatigue was pretty bad.

So a five or six seems fair. Um, I know that there are people out there in a lot more pain than I am, and some are using canes or walkers, or even in wheelchairs. And I would have to say there's just a lot worse than mine.

Linda Elsegood: What would you say your quality of life is now on that same scale?

Diane: let's go back to when I first started with the LDN and, and how it improved.

I would say it went from a five or six to maybe two or three because I did feel more like myself. 

Diane: Dan is good. Then I would say it went from. I kind of did that backwards. Then I would have said that my quality of life was probably like a four or five then.

Um, and then it improved to like a seven or eight. Um, I still had the daily pain from the rheumatoid, but it was better. And the brain fog and fatigue improved. So instead of feeling 80, I was more feeling my own age of 50. There's a big difference there. Um, to be fair, um, I have to say that LDN was not enough for me.

Um, it, it served me very well for months. But in the summer of 2013, I had a lot of stress at work. They were basically trying to terminate me. Um, there's a long process that they had to go through to do so. And I had requested reasonable accommodation at work to try and help deal with some problems caused by my rheumatoid arthritis.

Which were denied to me and the stress and the disease was very active and aggressive. It got worse for me in the summer of 2013. Um, I had to choose another treatment to go along with the LDN. It is again, considered an alternative treatment, but I have been taking antibiotics since the fall of 2013, and together the two are working very well for me.

Linda Elsegood: I mean, any condition where you've got an autoimmune disease, stress and trauma

are really big

triggers. So hopefully. Once your life calms down, things hopefully will improve tremendously as well.

Diane: I agree with you. Linda stress plays a very, very big role with my disease, and I'm sure with many others, such as what you have ms.

Um, in our online support groups on Facebook, you hear that all the time stress can trigger flares. Um, whether. For rheumatoid can trigger flares. There are different things that can trigger it for different people. It's been amazing. It's been quite a journey of learning and awareness since I been diagnosed in 2012, um, there's a whole world out there, not just my little corner of, of the earth.

Where people are suffering from these diseases, many doctors, not all of them, but many doctors are trained in medical school. How to treat symptoms of diseases. Some doctors look for causes. Some doctors try to treat the cause instead of the symptoms. It can be frustrating when a patient has a doctor that only wants to treat symptoms and not look at causes.

Um, I was fortunate in that I got to a doctor he's an osteopath where they try to treat the cause of a disease instead of the symptoms. And that's one reason I'm doing the antibiotic therapy in conjunction with the LDN. Um, for anyone listening to this interview with you today, I encouraged them to educate themselves.

Do your own research. If you don't feel comfortable with a treatment that is suggested to you, you have the right to refuse it and search for your own solution. Like I did. Um, look at side effects of medication that are prescribed for you. Decide. If you are willing to take that medication based upon what it can do for you and your condition and the side effects that could affect you at some point.

And if you're not comfortable with that medication, don't take it, find something else because there are alternatives out there. From the online community, Yahoo groups, Facebook groups, particularly, there are so many people that are successfully using what is termed alternative medication, low dose naltrexone, successfully to treat their conditions.

Um, I know you're doing interviews with many people with many different diseases, but I've seen people online testifying from firsthand experience of the success they're having with low dose naltrexone for multiple sclerosis, thyroid issues, fibromyalgia, rheumatoid arthritis. It's. Very individualized.

Your dosage may be different. Even 4.5 is considered an optimum dose for some things, but with ms and smother diseases, thyroid issues, the dosage can be very particular to you as an individual. And. One of the groups. I have an online support group for people taking or interested in taking LDN for rheumatoid arthritis disease.

And there's one woman that takes five milligrams per day. Some women do better at three; it's very much up to how an individual body works with medication. And I think for rheumatoid arthritis, diet can also play a very big part. It's not to be ignored. I have not done autoimmune protocol diets or gluten-free although, should I choose to do that?

At some point, I do believe it will enhance the treatment that I'm already taking.

Linda Elsegood: What can I say? What an amazing interview. Thank you so much, Diane, for sharing

Diane:  Yes. Are there any other questions that you would like addressed Linda?

Linda Elsegood: I'm going to ask is if you can write an article for our newsletter.

Diane: Yes. Um, I'll try my best. I, I'm not much into writing these days, but, um, I'll give it my best shot for you because it's worth it.

This medication low dose naltrexone is like a miracle for some people. It doesn't have harmful side effects. It may not work for everyone, but no medication does. Um, I applied you and your charity and the work you've done over the years to make this, um, more well known out in the world. And I attended for people listening.

I attended the LDN conference near Chicago in 2013. Because I was taking the medication and I wanted to, to go and hear from experts. It was well worth the time and money to attend. So if anyone wants to get more information, I encourage them to order the CD of the conferences that are available. Um, pays a small fee to listen to them online, do the streaming site.

Um, it's just, people call it a miracle drug. It's not really a miracle, but for some that are sick, it can seem like a miracle. Um, I find it an answer to a prayer that I found it when I did. And I'm so happy that it was available to me and I could find a doctor to prescribe it. Um, it has many health benefits, side effect benefits that people have experienced.

No more allergies symptoms after they started taking LDN for, uh, an autoimmune disease. Um, no more flu maybe or no more sinus infections, many, many different things are beneficial from taking this medication what's even better is longterm usage. There are no harmful side effects at this low dosage. And. So I just strongly encourage people that have an autoimmune illness of any kind to look at it as either an alternative treatment or something to take in conjunction with your other treatments.

Um, more information is becoming known through research. Um, hopefully, it will become more widespread with the doctors. It is up to us, the patient. To make our doctors aware of the medication and the uses for it and get them on board to prescribe it for their patients. So I encourage people to do that. Um, Julia halts, um, Teleseminars via phone for people that want to go to their doctor and talk about taking the low dose naltrexone and she'll have helpful articles and papers that you can print out and take to your doctor to help educate them.

Linda Elsegood: Thank you very much for sharing your experience with us.

 

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.

David - US: Trigeminal Neuralgia, Ganglionopathy (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

David shares his Trigeminal Neuralgia and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

David’s pain caused by Trigeminal Neuralgia gradually developed from the top of his neck throughout his whole back. Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. 

David noticed that even a mild stimulation of his face, such as from brushing his teeth triggered excruciating pain. Desperate for finding a solution, David came across Low Dose Naltrexone (LDN) which has helped him “get his life back”, hailing it as the “greatest drug of the 20th century”.

This is a summary of David’s interview. Please listen to the rest of David’s story by clicking on the video above.

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

Linda Elsegood: I'd like to introduce Crystal from the United States to take LDN.  Thank you for joining me, Crystal.

Crystal: Thank you.

Linda Elsegood: Could you tell me when you first started to feel your MS symptoms?

Crystal: I wonder if some of the strange symptoms I had during my last two or three pregnancies was really a mass related. I would get tingling and numbness in my fingers and visual disturbances like blurry vision or spots in my vision. And we would just wonder what in the world is going on.

I asked my OB about it and he just kind of dismissed it as maybe babies on a nerve or something like that. And nobody ever thought anything of it. And I didn't have it after pregnancy. So I don't know if that was related or not.  It's hard to remember the specifics of everything because of the fact that we were just kind of blew it off. I can remember weird things. A couple of years later after my last pregnancy, this may be a year afterwards, I can remember some weird things like waking up biting my tongue because it was kind of loose or hanging off to the side. Then shortly after this, I would have insomnia, restless legs syndrome, and my arms and skin would crawl and itch.

All of this would make me feel really crazy and I started having double vision after this and dizziness when I stood up or just got up too fast. This was right before I had my major symptom. My primary care sent me to an Ophthalmologist for the double vision who said my eyes and optic nerve were just fine.

So everybody was baffled why I would be having double vision. Shortly after this was when I woke up one morning with a numb mouth on the right side. My lips and my tongue were numb and tingly. I was also having headaches at the same time. So I had an MRI scheduled because of the headaches that just persist even major medication. Narcotics did not help these headaches. When I woke up with numbness one morning, my husband said: " That does just not seem right. You need to call the doctor." And my husband is not the type to recommend going into the doctor. You know how men are. When he said that I should go into the doctor, I really took that seriously. That must have sounded serious to him. I went in, I saw a doctor that wasn't my primary care because she was out that day and they tested my sensations with Q-tips to see if I could actually feel.

The acute tip being touched my tongue and different parts of my face, and I could still feel the sensation of the Q-tip there, even though I was numb and tingling. So it wasn't that all feeling was gone. We eventually, after discussing things concluded it might have something to do with my usual nighttime teeth clenching.

I was told to follow up in a couple of days, which I did, but I still had the numbness. So when my doctor that oversaw my primary she didn't feel comfortable waiting for my scheduled MRI, the one that was set up because of my headaches. She said: " I'm going to have to send you down to the ER right now for an emergency MRI."

And so that's what happened. And I went down right away. At that time, the results were read by the ER doctors and radiologists. That night I was very tired. I had to wait quite a while to get the MRI and then for them to read it. The ER doctors and radiologists looked at the MRI and they all thought it looked most like MS. Later on, when I finally got an appointment with the Neurologist, I don't know how it is there and in England but it takes a long time to get an appointment with the Neurologist. When I did finally see him, he did confirm a MS diagnosis. I never did go on a disease-modifying therapy because an older lady from my church had read about LDN, and I knew that the disease-modifying therapies were kind of toxic. She told me about LDN and I asked for it immediately from my Neurologist, and fortunately, he was the type of Neurologist to go ahead and prescribe that for me, even though they did encourage me to start DMT because they said the prognosis for people is much better the earlier you start.

I don't have much to base. I only had that first attack. I can't tell you how much of a difference LDN made in my disease, but I do know it helped with insomnia, and I have been feeling pretty good for having MS..

Actually, when I talked to my pastor the other day, he said:" I'm impressed with how well you've been doing." Sometimes with MS once you start going downhill, it's quick. It's like going off a cliff, and I haven't had that battles so far, and maybe it's due to the LDN that I haven't gotten any worse.

I know that LDN has helped me tremendously with insomnia. I don't have that anymore. I don't have the itching and crawling of the skin or the restless arm. So it seems that LDN has done the job and I do plan on going on Copaxone just because I don't want to take measures to prevent further damage which LDN hasn't yet clinically been proven to do.

But I will be taking the LDN at the same time because I know Copaxone and LDN are the only one you can take with LDN. So as long as I can, I'm going to stay on the LDN.

Linda Elsegood: Would you like to tell people what the regular day for you is like?

Crystal: Sure, as I said, right now,  I just have pain.

I haven't had much fatigue anymore. In the beginning, right after my diagnosis, I had tremendous amounts of fatigue. I would hit a certain part in the morning and I would just have to lay down at night. I tell my kids:" Can you kids please clean this room and they would work together, and I'd go lay down because I was just so fatigued. I don't have that anymore. I've been on LDN now for six months, and I wonder if that fatigue that I used to experience isn't gone because I take it and get a good rest. But now I just have intermittent bouts of pain in various places.

I can feel twinges of pain. They're fleeting. They come and go pretty quickly. I don't have much muscle weakness or anything like that, which is good because I need to take care of my children. So it's good that I don't have anything major right now. I do have visual disturbances sometimes when I get up too fast. I do feel like I'm going to get double vision, but I never actually get it.

Linda Elsegood: But on a daily basis, you have seven children. And how many do you home school?

Crystal: I homeschool the oldest four. I don't homeschool the youngest three.

Linda Elsegood: So that is one busy mum. So I see you're doing extremely well. I mean, it would be a big job, I think for a healthy person, let alone somebody with MS. You are doing extremely well.

Crystal: Thank you. I do have a lot of help. I have the homeschooling materials we use are very helpful. My two younger ones that I homeschool have videos they watch so it's a tremendous help. We have an outside teacher that teaches them.  I'm just there to help out and they do very well there. I have some wonderfully smart kids.

Linda Elsegood: Well, thank you very much for sharing your story with us.


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

Cheryl - US: Lyme Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Cheryl from the United States takes LDN for Lyme disease and Co infections.

Her story  goes back into childhood. She had always struggled with some sort of illnesses. Gastrointestinal issues,  stomach virus, rashes on her face, etc

In her teens she developed depression and anxiety and later pain.

When she was 21, her dog got very ill and she noticed she had a four to five inches in diameter round bite that  looked like a Brown recluse bite. She was having palpitations and strange symptoms.  That bite stayed for about two to three months on her body and it had a little centre point.

They diagnosed her with fibromyalgia in 1994 because she felt like she had the flu all the time. And it just never went away. She was vomiting all the time, she had to leave school in 1995 and declared total and permanent disability. Then she slept all day and night, was freezing all the time, and nobody paid any attention. And at that time, Fibromyalgia  meant "It was all in your head." In 1996 a  specialist put her on Ambien and Flexeril.

She went into remission after started seeing his current husband from 1996 to 2000 until her children were born.

She started to get all sorts of symptoms,  restless legs and vomiting.

She had twins and just slept one hour each night and by the time they were eight months old, her body was just in terrible pain, her gallbladder had gotten to the size of the liver. She got a two hour surgery.

The months following, she ended up trying Methadone, Oxycontin and all sorts of pain meds. She was freezing, had chills and sweats, had a lot of allergic reactions and scratched all the time, couldn't walk and visibly see swelling in her feet. So by late 2009, she was unable to leave her house, became housebound and couldn't wear shoes.

She would wear earplugs because she was so sensitive to sound and light. Everything had to be covered on windows. She was not eating most of the time and still was vomiting.

Later on she went to a clinic and they told her she had been exposed to Borrelia. She received treatment with herbs and after 3 months was able to at least get out of the house in a wheelchair.

She came off opiates because she had Sjogren's syndrome.  Eyes and mouth were extremely dry and so she started a huge elimination diet. She started  on very low doses of LDN she learnt about LDN through a naturopath.

She started at 0.1 milligram, and  was going to bed at 4:30 AM. So she started taking it at 4.30Am and her schedule readjusted. Now she takes LDN at around midnight. She tried to up the dose but because she is very sensitive to medications, It took 4 months to see any results.

 "I tell people don't quit just because you don't see results right away, my body's been sick my whole life,  so it's not going to turn around in five seconds.

But by three months or four months after starting LDN, I noticed that I really didn't need a coat.

I went out one day to bike, and I wear a normal shirt without not sweating and do not have chills. I was able to come off medications like Neurotin and Flexeril.  By 9 months I could bend and clean.

Before I couldn't even pull my back leg up to 90-degree position I couldn't walk down my stairs.

I think my quality of life is probably about an eight or nine now and some days it's actually 10. I have completed a course successfully at Oregon state university after not being able to go to school for years.

And I do pottery, I am a personal advocate now in Portland for a group.

And so I would say that my quality of life is quite good because I get to talk to my children and I get to eat food, and I get to walk up and down my stairs, and I get to sleep.

I'm not saying it's perfect. But I consider level three pain or level two pain to be really good."

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

Linda Elsegood: I would like to introduce Brittany from the United States who takes LDN for Vasculitis and Multiple Sclerosis. Thanks for joining me, Brittany.

Brittany: Thank you.

Linda Elsegood: Could you tell us when you first started to notice that there's something wrong with you?

Brittany: I was pregnant in 2006 with my second child and he appeared to me to be an exceptionally large baby.

The doctors had said: "Second children always feel larger. He's not that big. That's something you're just worried about." Because my first child had gotten stuck for several hours, and so I was nervous going into the delivery. My first child had been an eight-pound baby, and so towards the end of the pregnancy, they did aside for dates ultrasound and told us that the second baby, my son was only seven pounds.

And so they didn't feel that there would be an issue with getting him out. When the delivery date actually came and he came out he was actually 10 pounds half, and It was delivered vaginally which apparently is not a safe way to deliver a child that large. So in the delivery, obviously,  there's quite a bit of push and pull going on between the doctor and me.

The baby was severely injured and  I apparently had suffered three dissections, a swelling of my vasculature in the brain, multiple pseudoaneurysms. I was just very sick and was bleeding in my brain.  During the delivery, I had told them I have a headache and they said: "You can't stop pushing because his head is delivered and if you stop now, you're going to have a brain-damaged or dead baby. So you got to keep going." So I keep pushing at the advice of the doctors and ended up being released just fine, went home and that headache just persisted, would not go away. And I call the doctors, they say to take Advil, drink diet Coke, caffeine. "You're probably tired because you have two babies." About two weeks after the delivery the headache had gotten so bad that I was having visual disturbances, vertigo and nausea. We called the doctor and they said he needs to go right to the emergency room.

They ran a CAT scan and came back and said,  "You have a spot on your brain. We can't let you go home. We don't know what it is." So I was admitted to the hospital. They did a four-vessel cerebral angiogram and found significant stenosis feeding all through the vasculature in my brain. I had dissected both carotid arteries at the neck level, going into the base of the skull, and I was transferred and admitted to the ICU at Barrow's Neurological Institute, which was one of the premier neurological hospitals here in the States. They essentially told us:" We're doing everything we can." I was on massive blood thinners and massive doses of steroids. They essentially said, "We're doing absolutely everything we can to save you.

It might not be enough." And at the time I had a two week old and a two-year-old at home. I was a stay at home mom. We just have to sit there and hope for the best. We asked what else we can do? And they said to pray. And after several weeks in hospital as they were working on anticoagulation to make sure that the dissections didn't clot and end up in a stroke. They came to me and said, "At this point, we've done all we can do. So you can either go home and spend whatever remaining time that you may have left with your babies, or you can stay in the hospital where if you do have a stroke, we're more likely to be able to catch it."

And I felt that if death were in the cards, I wanted to be home with my kids. I left the hospital, went home. My husband's father is a physician, so I asked if they would allow us to move in with them. In case I did have a stroke, at least we would have a medical professional on-site that could help.

 I was released to my inlaws house where I subsequently had three strokes and was very sick. At that point, they felt that this was simply a postpartum complication. They weren't sure what they were treating. They just knew that the swelling and disturbance in my brain was significant enough that I needed to be on steroids longterm.

I needed to be on various neurological drugs to, you just be able to cope. There were tons and tons of pain from that injured area in my head, daily chronic headaches. It was really awful and slowly over a period of probably six to eight months, I began to recover, but I was still just a little off.

My husband described it as. You know before you were wicked, wicked smart. Now you're just wicked smart. So I lost a wicked by my husband's estimation. Life is really tough. I had very little energy. My thinking wasn't there. It was difficult to be the caregiver for two children.

I was kind of slowly working toward trying to get to my previous baseline. After about a year of recovering, suddenly I started to just not feel well. There was a node that had developed behind my ear, a solid lump feeling. I was exhausted all the time, sleeping a ton, not from depression, just because I was exhausted. I had some skin lesions that had come up. We were really trying to figure out what, what could this be? I went back to the doctor. My neurologist thought perhaps MS. Another team of neurologist said, no way MS and I was sent to a rheumatologist to ran another full battery of tests and said how we found it. "You're actually testing positive for a very rare autoimmune disorder, a very rare form of vasculitis called polyarteritis nodosa." And I began a two year treat the course of treatment with Methotrexate and steroids. By the end of that two year period, I no longer tested positive for it. They considered me to be in remission, but I still didn't feel well.

So I went through probably two more years of just feeling unwell. Like I had the flu all the time, constant body aches, headaches, exhaustion to the point where my kids would get home from school at the end of the day and I would be sitting there trying to help them with their homework, and I would fall asleep sitting up on the sofa.

Eventually, I was not doing housework, not making dinner. I was a walking zombie. Finally came to a head when I had gone to pick up my kids from school, was driving home, and I fell asleep at a red light with my kids in the car. When that happened, I called the doctor and said, there's something wrong with me. I am not okay. I might be in remission from Vasculitis, but I am not okay. Something is wrong. I was concerned about my kids' safety. I was concerned about being able to be an effective mom.  I went back in for another full battery of tests, and at that point, they found a lesion that was suspicious for Ms, and they had already seen a lot of the myelinated spots in my brain.

Because I had no symptomology of MS, my main team of doctors wasn't ready to call it MS. When I went back in for that, next set of MRIs, they found that  I had a new lesion in my spinal cord, and so they said, we are now ready to make a definitive diagnosis of MS on top of the vasculitis, which is in remission.

So we elected to immediately go on MS therapy on Copaxone, which is a daily injection. They put me on Ritalin, and on antidepressants to try and get the energy levels up. And even with all of those pharmaceutical interventions, I was still sleeping 12 to 14 hours a day, just exhausted.

And after I would sleep an entire night, felt like I hadn't slept at all. So it's a very frustrating period of time. I kind of resigned myself to, I guess this is the new normal and life is not what I thought it was going to be.  I'm never going to be able to do the things that I wanted to do.

I had a career in television news. I was a presenter. Giving all that up was a lot of my identity was very difficult. I was constantly looking for things to help. We had tried diet and exercise and all kinds of different interventions that were sort of more along the natural side of things because that's kind of where I naturally align and nothing was working. My husband was exhausted. We were all exhausted. We went on a vacation to Seattle to visit my brother and his family. We went to get a manicure and in the salon, it was a rainy day in Seattle as it often is.

And we live in Arizona, which is the desert and very sunny all the time. I was sitting in the salon and getting my nails done. There was a woman sitting next to me, and she made a comment about the rain, and I said, "I love it. I bet you know if I live here, I probably don't. But I love it because I'm coming from Arizona where it's eternal sunshine, and it's sort of nice to have some different kind of weather."

We started chatting and I said: "The only thing I really get bothered about with the rain is it makes me so tired." And she said: " Oh, why?" And I said: " Well, I had a mass." And she said: "Really? Have you heard of LDN?" And I thought, who is this crazy woman in the salon who's trying to pitch me on?

I thought multilevel marketing or something ridiculous. She started telling about it, and she said: "My naturopath just prescribed this for me. I've been on at three days, and I feel great. I have Hashimoto's thyroiditis and it has completely turned my life around. It's only been three days, but it's night and day, the difference. "And I thought, here's one more thing that somebody tells you about and it gives you false hope.  I can go and ask the doctor, and it's not going to make a damn bit of difference because nothing works and nothing helps. I was very pessimistic and hopeless.  She said: "Please give me your email address right here, and I will email you information about it." I thought that's odd that this stranger is so in passion about this medication. If I give her my email address, I figured I have nothing to lose.

I came back to Arizona and looked over her email and started doing some research and found the information from the UK and thought, wow, if this really does all it says it does, this could be amazing, and this could be the answer. So I called my naturopath and said: " Would you be willing to talk about this?"

And she said: "Sure. Come on him." And we sat down, and she said:" I have a couple of patients who are on. If you're willing to try it, there's no risk. And you can take it with the capacity, and it's not going to hurt you. So let's go ahead and try it." So she prescribed it starting at 1,5 mg, and she said: " Take it slow because you don't want to rush into it."

I started taking the 1,5 mg, and I was just at the cost of a charity event that I had volunteered for and had taken on entirely too much. I had volunteered prior to the Ms diagnosis and thought that  I would have enough energy for it, and I did not have enough energy, and I was tired to the point of tears every night because there was no way that I was going to be able to get it all done. I was so stressed out and worried about letting my kids, friends and the school down. I took that first dose and I noticed right away the next morning I popped out of bed.

And I was like:" That's probably placebo because I'm so hopeful. It's going to do something."

 She had told me you have to take 1.5 for the first several weeks so that you don't overload. After maybe four days, I felt better than I had felt in years. I had energy. My mood was better. I was less irritable.

I just felt like I could cope like I could do things, I could get up in the morning,  take a shower,  get dressed. My shower didn't completely wear me out for the rest of the day. I could do the dishes again, make dinner again. All of a sudden I was a person.

I was human again, a mom and a wife. I thought: "Could this really possibly be this drug?" I called the doctor, and she said:  "If you feel that good, go ahead and increase to three. Like I'm fine with you taking it at your own pace." And I increased to three, and it only got better.

Suddenly I had my whole entire life back. I was able to go back to work.  I work with my husband and in our family business. So I'm back to work now,  a contributing member of my family and my household and our income.  I'm able to care for the house and work and care for my kids and volunteer.

I run a girl scout troop.  I'm like an Uber mom the way that I always wanted to be. And the one thing that made the difference was 3 mg of this little drug. It's been powerfully life-changing for me because I felt like I had lost myself and who I was.

Then all of a sudden this little pill that I take every night is..

My pain is a far decreased. I was daily narcotics from headaches and body pain daily. So I had my narcotics prescriptions came in, doses of 120 at a time because otherwise, I was unable to move sometimes and I haven't taken narcotics in a year because that's when I started taking the LDN. The moment I started taking LDN within maybe three days, any pain that I had was treatable with Motrin. My chronic headaches, I still get them daily, but they don't stop me in the way that they used to. I don't have to retreat to a dark room and put ice on my head and cry and pray.

I can work through my headaches now, whereas it was impossible before. I have almost zero brain fog. I'm a productive person at work. In fact, I was just hired an as independent consultant for another company. All of these things that I thought that I had to give up because of my brain just didn't work anymore.

It's back, and I can communicate, and I can write again and I can earn money and I can be with my kids and my husband and keep the energy level up. And the pain, like I said, is decreased. My mood is not hopeless anymore. It completely gave me energy and hope and less symptomatic pain.

And everybody, I talked to now who has any kind of autoimmune disorder I'm like: "Please go talk to the doctor about LDN." I turned into that woman in the salon now because it made such a huge difference for my life. I'm so grateful that I ran into a stranger who wanted to share that.

Then we had that kind of random conversation. I don't really believe in coincidence. I was very fortunate to have that woman in my past that day because it made such an enormous impact for not only my life but my kids' lives and my husband's life, our life as a family.

 I will never give up my LDN forever and ever because it just completely changed my life. I'm grateful. When I was asked to do the patient testimonial, I felt, you know what? I want to pay this forward because of it's inexpensive, and I have no side effects from it whatsoever and the benefit, it's all been upside, and it's just made an enormous difference. I feel like I can be the mom that I wanted to be, the wife, the person that I wanted to be, and I don't have to compromise because I have an illness. That is a true gift and a true blessing.

So that's my story.

Linda Elsegood: It's fantastic. I mean, most of the story. Are you still on 3 mg? Did you try going up to 4.5?

Brittany: I am still on 3 mg. We have talked about going up to 4,5 mg. I do have some muscle spasm activity, so we've been holding at the 3 mg. It's pretty good.

 If there were ever to be some exacerbation that was to be difficult, I have room to go up. But I don't really feel the need to. I will also say though, that since I started taking the LDN, I have had three lesions completely disappear off the MRI. What I've been told by my neurologist is that it is unusual that the Copaxone certainly is not doing that.

They don't expect Capaxone to take care of lesions, they expect it to prevent new ones. So they were very enthusiastic about the fact that I've had three lesions disappeared. I'm pretty into the answer about that too, because you only have one brain, so you want to preserve that if you can.

It's not only my subjective experience that I can speak to, but it's also the objective image from the MRI that tells the doctors that I'm in fact getting better. That's pretty awesome.

Linda Elsegood: Wow. Well, thank you very much—you sharing it. I mean, wow, just amazing.

Brittany: It really is, and I just feel so fortunate, and I wish that this were more mainstream.

I really wish medical doctors were using it more and considering it more. If I had been given the option at the beginning to try LDN rather than going on Copaxone, life could have been different so much earlier, how lovely that would have been. Do you know?

But in the meantime, I'm just incredibly grateful for what I've gotten back because it's been a life-changer.

Linda Elsegood: Well, thank you.


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.

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

Linda Elsegood: I'd like to introduce Anne from France who has Multiple Sclerosis. Welcome, Anne.

Anne (France): Thank you!

Linda Elsegood: Could you tell us when you first started to notice MS symptoms.

Anne (France): I first started to notice MS symptoms when I was in my mid-thirties. They were urgency, left foot dragged a bit.

Linda Elsegood: And when were you finally diagnosed?

Anne (France): I was finally diagnosed because I went to an optician because I wasn't being able to see red, the colour red. And he said to me: "You need to go and see your doctor." So, he obviously knew what it was. And I knew as well, I suppose. So I went to the doctor who sent me to a neurologist, and they diagnose it in 1981.

Linda Elsegood: So how did your MS behave between 1981 and when you found LDN?

Anne (France): I had very odd social behaviour because the relapse was so different. Sometimes it would be the eyes that were very much affected,  legs walking, losing balance, a loss of energy.

Linda Elsegood: Were you having a lot of pain at that time?

Anne (France): Yes, I had a lot of pain too.

Linda Elsegood: Just trying to remember what you told me earlier. So what about fatigue?

Anne (France): Fatigue was one of the things for me. I was teaching at the time and, once or twice  I think my lessons must be more boring than I realized.

I went to sleep in my own lessons.

Linda Elsegood: And what about cognitive problems?

 Anne (France): I was having that as well. 

Linda Elsegood: So how did you hear about LDN?

Anne (France): I read about LDN in the magazine, New Pathways, and it seemed to be a good thing to try, so I had a go and I was very glad I did.

Linda Elsegood: Okay. How easy was it for you to obtain a prescription?

Anne (France): Very difficult actually, because no one would give me a prescription until I went privately to a neurologist and honestly, in a lot of pain at that time, he didn't know what to do to help me. And I asked him, what about trying it? As you know, there's no harm in getting you to go. And he said: " Right, you go ahead." He would write me a prescription. That was great. I was really overjoyed.  And after that took the prescription to the pharmacy and haven't any problem in getting it. And it was fine. And after that, my doctor wrote one every time I needed it.

Linda Elsegood: What year did you start LDN?

Anne (France): I think it was in 2001. You are now in 2011, right?

Linda Elsegood: So when you first started, did you notice any introductory side effects?

Anne (France): I didn't know if there are any side effects except that the pain was much less. I was so grateful for that. I was always convinced right from the beginning when I didn't really believe that I had MS, I couldn't really believe it. I thought.

that was being confronted with lots of problems in my life and I've always overcome them. So that was one of the ways it helped me to overcome it, and I was so glad.

Linda Elsegood: So what would you say LDN has done for you?

Anne (France): It got rid of the pain. I can't speak for everyone, of course, but it's helped me a lot in that way, and I was very grateful to that.

Linda Elsegood: Did it help with any of your other symptoms?

Anne (France): It didn't really help with fatigue because I just got as tired as I was before but I maybe have a little less.

Linda Elsegood: And what about cognitively?

Anne (France): I would like to say that it helps but unfortunately, no.

Linda Elsegood: So really what it's done for you is helped with the pain. What would you say to other people who are contemplating trying LDN?

Anne (France): I would say definitely try it and if you can't find that your local GP write a prescription for you, perhaps do as I did and go privately and say you wanted to give it a try.

Linda Elsegood: Okay. Is there anything you would like to add?

Anne (France): I think that family knowing that there was something there actually helped and doctors were there was a wonderful support.

Linda Elsegood: Okay. Thank you.

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.

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

Linda Elsegood: I'd like to introduce Angela from Wales who has Multiple Sclerosis. Welcome, Angela!

Angela: Hi, Linda!

Linda Elsegood: Could you tell us when you first noticed your MS symptoms?

Angela: I think it was about 6 years ago, but I didn't know obviously that it was MS.

I think the first sign was when I noticed I woke up in the morning and one of my legs was feeling very numb.

 I think that went on for a couple of months and I just put it down to sleep. Being busy, working and with a family, I just ignored it, and it just went away. So I didn't think anything more of it. I think about 5 years ago I'd come back from a holiday in Canada and thought I had a virus.

I went back and forth to the doctors. They couldn't diagnose what was wrong with me. Then I lost all the feeling in my legs from my feet right up to my head and obviously got admitted into a hospital for tests and was eventually diagnosed.

 Linda Elsegood: What impact did it have on you being diagnosed?

Angela: It was very tough. I recently got divorced and it wasn't a great time. And it might've been to do with the sort of stress of that situation. My mother-in-law from my ex-husband had MS, and she had it for many years. I just thought I was going to end up the same state as she was, which wasn't great.

There was no real treatment that she seemed to have. She could hardly walk. She's in a wheelchair and basically didn't do anything with her life so I thought it was tough ending up like that.

Linda Elsegood: It's a very scary prospect, isn't it?

Angela: It was. When the consultant when I first was in the hospital said: " I think you're too old to have the MS." I was 46 at the time and then, of course, when they did the MRI scan and I came back to see her, and he said, well, no, actually you have MS. And thank you very much. Bye-bye. And handed me over to be off the floor. The consultants aren't that great at dealing with this sort of thing.  I just found it really difficult to talk to anyone because I just had in my mind this picture of my mother in law so it wasn't great.

But then you pick your server, and I think, they review you after 3 months, that to see whether you've got the real nasty type, and after 3 months then, maybe you realize it's not as bad. Your life still can carry on even with this diagnosis.

Linda Elsegood: So what was your MS like before you found LDN?

Angela: I think it was getting steadily. They say I have a benign type. I don't think I have the relapsing-remitting type, but every day I have symptoms.  I remember it was a Christmas time, and my daughter had come with me to try and go shopping, and I literally walked into a max shop with my daughter.

We just really walked into the shop, and I just had to say to her," I'm sorry, I've got to turn around and go home." I just felt I couldn't even walk around the shop. My legs just felt so bad that day, so it was like the numbness and the weird sensation, you know?

So I just knew. They weren't going to carry me the shop. So I, it had a huge effect on the quality of your life because I was still working, I'm still working now but I wasn't there without the LDN if I would still be working. The sort of extremes of temperature really affect and we were having a pretty cold winter. It just sort of really limit what I could do. I don't think the LDN has had any miraculous effect, but I think, most of the time keeps me stable and it hasn't gotten worse. I've had a bad virus of that time, and I've had a few problems since then with the mobility, but I think that's bound to the virus.

I think in terms of the fatigue it's had a huge effect on just keeping going and keeping outdoors. I think it's kept me stable.  I don't know where I would be  but I know at that time I was really starting to struggle.

For the next two years after I had this virus My mobility hasn't been perfect by any means but it definitely improved things. I think it gave me a bit more confidence. You sort of tending to sing like, no, I can't go out. I can't do this. I can't do that.

I mean, the only side effects I had when I first started to take it, I have a lot of spasms in my legs and I had a lot of muscle stiffness for the first two weeks, so I said: " Oh my goodness, this is going to make me worse."

But I persevered with it, and it's been fine. I haven't had any sort of bad sleep or anything like that. I tried to take the LDN in the morning and that doesn't suit me. It suits me better to take it in the night. So I just take a tablet at night from and that seems to work better for me.

Linda Elsegood: Did you have any other side effects?

Angela: I had the usual, sort of a nice fog, bad headaches, feeling a bit spaced out, dizzy and fatigued basically.

It was just horrendous, lots of sensation, bladder problems. I was taking antibiotics because I was having constant infections but now I realize all these years later that it was probably the MS. Now I haven't taken antibiotics for over 18 months I think. So I think it's definitely had an effect there. It's helped the bladder problems, the fatigue. At one point I was starting to get, not depressed, but starting to get very down about it all so it's helped to keep me positive with things. Once you lose your positivity, then you might as well give up.

Linda Elsegood: So how would you compare your quality of life now with before LDN?

Angela: Until I had this recent virus I would push myself to do more or less what I used to do. But within limitations I know I can't go walking huge distances but  I kept working. I've kept trying to keep the standard of what I do in my work up to what I used to do. I just feel it stabilize me somehow. I really didn't know where things were going to end up. I just thought my general wellbeing was a lot better. I think it lifts my energy levels really.

The other things that I used to have was problems in my eyes, flushing lights and  I'd see lots of spots in front of me. I don't seem to have so much in that either so I guess I got to rely on LDN and keep on thinking,  I'm afraid not to take it now because I don't know where I would be. Some people might think it's a placebo but I just feel it stabilized me certainly.

This virus has given me a bit of bronchitis but LDN keeps me stable.

Linda Elsegood: What would you say to other people who are contemplating trying LDN?

Angela: In the job I do, I've got lots of people, 9,000 people at work.

Some of them unfortunately also have MS, and they're very scared to take anything without a neurologist or doctor's advice. And what I would say is,l:" As far as I'm aware, there are no side effects." I think for the type of ms that I have, there are no treatments, no drugs so it's not doing me any harm.

It may be going good. I don't think you've got anything to lose really. Some of the drugs and I've been lucky enough not to need them, like Methotrexate it is basically poison, isn't it? So you're poisoning your system. I mean, they are drugs that they use for chemotherapy. As I understand it,  there must be a body of research in LDN to show that there aren't huge amounts of side effects. It goes to your system for four hours and it doesn't affect any of your major organs or anything else. So why wouldn't you try it?  I would just say give it a try. It might work for you, It might not,  It might have fantastic results just like me,  to keep you stable. All I can ask for is to try it. The medical profession doesn't have all the answers. If enough of us are taking this and finding benefit from it, then just gotta be something in there.

Linda Elsegood: Okay. Well, thank you very much for sharing your story with us.

Angela: You're welcome.

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.

Amarjid - India: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I'd like to introduce Amarjid from India who takes LDN for CFS/ME.

Thank you for joining me. Could you tell me when you first started to notice any symptoms?

Amarjid: I'm 72 now. I had been suffering from it since I was a small child.

Linda Elsegood: Really? Wow.

Amarjid: A long time. Yes, all my life I suffered from Chronic Fatigue Syndrome.

Linda Elsegood: And how did that impact on your life?

Amarjid: I have not been able to work since 1975. It gives me extreme tiredness and aching in almost all the muscles of the body.

Linda Elsegood: And what would you say, before you heard about LDN, what would you have scored your quality of life on a score of one to 10 and 10 being the best?

Amarjid: It's still there before LDN only have to be about 10%.

Linda Elsegood: What would you have said your quality of life was like on a scale of one to 10 before?

Amarjid: It was really bad and it still bad. Then I felt 10% better.

Linda Elsegood: What had it done to help you? How did LDN help? Has it helped with the fatigue?

Amarjid: It gives me more energy and reduces the muscle pain

Linda Elsegood: And how did you manage to get a prescription for the LDN?

Amarjid: Here It's imperative the GP. He has been describing it me. I only have guidance until next year. I don't know how to do after that.

Linda Elsegood: I might be able to help you with that. I'll tell you details at the end, and I'll send you what you need to do. What would you say to other people who are thinking of trying LDN for EME/CFS?

Amarjid: It doesn't help very much but it helped me 10%.

Linda Elsegood: When you first started, did you have to start on an Ultra-Low Dose and work your way up?

Amarjid: Yes.

Linda Elsegood: And did you notice any side effects?

Amarjid: No. Because it was a small dose. I started in 1 mg and then every month I up to and then 3 mgs 2 mgs two, and now 3,5 mg.

Linda Elsegood: Good. And how long have you been taking LDN?

Amarjid: I think two years now.

Linda Elsegood: Right. Well, that's good. Well, I hope LDN continues working for you, even if it hasn't been that spectacular. 10% is certainly better than where you were before, wasn't it?

Amarjid: Yes, indeed. Thank you very much for sharing your story with us.