a patient story
a patient story
Old friends treat autoimmune disease
All feedback and questions welcome
The rate of autoimmune disease has doubled over the last decade now impacting 10% of the population. Medications work for many but the side-effects can be significant. Humans and parasites (Helminths) have had a symbiotic relationship forever. In our quest for hygeine we have changed our relationship for the worst. Is it time to invite 'old friends' back into our world. This episode screams yes.
modern lifestyles and diet have created a depletion of the human biome. The biome are all those nice little bacteria that coexist in our gut. And this also includes the loss of helminths, a large parasites, and you can see them with the naked eye. Helminths have a relationship with the microbiome and they also have a relationship with us. And around the world, there is a growing number of people with serious illnesses and also not as serious but detrimental like allergies and a topic conditions who are looking for alternatives and Helminth therapy seems to be becoming more popular. Today, we have an expert Jane Paki from New Zealand. Jane would be talking to us about her case with Helminth therapy. Hi, Jane, how you doing?
Jane Puckey:I'm good. Thanks, Daniel. Thanks for having me on.
Daniel Baden:Pleasure, absolute pleasure. I've got to say this topic will, I think, freak some people out. But I reckon you're probably really used to those sentiments.
Jane Puckey:Well, yeah, funnily enough, but never freaked me out. I suppose if you've got a serious disorder, then you just think Well, that's really interesting. And let's have a look at that a little bit closer. I didn't, it didn't freak me out at all.
Daniel Baden:It's amazing what a chronic issue with pain or discomfort can do to you're willing to accept all sorts of different therapies.
Jane Puckey:That's right, you suddenly have a lot more open minded.
Daniel Baden:Tell us about your your story.
Jane Puckey:My story started way back in 2010. And I was diagnosed with scleroderma, which is a autoimmune disease a little bit like lupus. So it's a systemic disease that affects pretty much every cell in your body, but particularly the connective tissue. So I started off with just feeling really, really fatigued and weak, suddenly couldn't keep up with my peers on a brisk walk. And then eventually, it was diagnosed when my hands swelled, and I had to have carpal tunnel releases, and the swelling just never went away. And in the end, I had some blood tests and that identified scleroderma
Daniel Baden:then later, or perhaps at the same time, you'll tell me, you also were diagnosed with myositis. Is that correct?
Jane Puckey:That's correct. Yes. So myositis is a component of scleroderma for many, 30% of people with scleroderma. So myositis is when your muscles become very weak, then you've got this elevated CK reading. CK is creatine kinase. And it's, you get that reading in your blood when your muscle cells are breaking open and dying. And it releases the CK, which they can measure on a blood test. It's quite a handy test because that being high, I was able to track my disorder from when I introduced helminths. So in the beginning that I utilized, you know, Orthodox medication, methotrexate, and quite a few other ones, which did, I think, stop it getting really bad at that time. But they all failed for one reason or another. And then I went through a period of a few years, we have these awful spikes and muscle inflammation and very high CK readings, moderately high. I think you can get worse. But for me, that was pretty bad. So yeah, and I was on steroids through that period, because the other drugs hit for one reason or another, weren't suitable for me anymore. And the doctors took me off them
Daniel Baden:do have any inkling as to why you develop this autoimmune condition, or what were the relative cause of the spikes?
Jane Puckey:No, they're the spikes used to just come routinely, every three months after I reduce my prednisone dose, then I would just flee and it seems to come every three months during that period of time. Just a very reliably come vaccinated and I suppose it was because a stain on you know, 20 or 30 milligrams of prednisone every day is not a good idea, especially when you have scleroderma actually, but not a good idea in general. So I'd have to wind down and then it would happen again. And just like a roller coaster really, at
Daniel Baden:this point of time. How were you feeling mentally? Where were you going with it all?
Jane Puckey:Well, I mean, obviously, I don't think it affected me mentally. As much is perhaps it caught up because I've got a very supportive home life. I felt loved and had a family and yeah, so I think that was things that helped me mentally but physically not being able to get up the stairs. You know, you there was a few times Is the posture? Well, if you can't get up the stairs in one go, but really, the prednisone would, you know, as soon as I take it again, then I'd be able to function again. So, you know, I kept that with things like dancing and that through that period of time, but just just had to it was very reliant on steroids. So I was always on a baseline, but very often, I was on 20 or 30 milligrams a day as well
Daniel Baden:did this just come out of the blue, this diagnosis of scleroderma? I mean, how old were you at the time?
Jane Puckey:I was 47. And pretty well, It did just come out of the blue. I was a busy midwife. It's quite a stressful profession. So at the time, I thought that stress was implicated. And I think a lot of people feel that way about autoimmune conditions that they can be triggered by stress.
Daniel Baden:Stress is certainly a big component of just about every chronic disease, isn't it?
Jane Puckey:I'd say so. Yeah. So being up all night long and working in a long day on the trough and that sort of thing. When I'm really honest, I think I was actually developing scleroderma ever since I had my children. I think there's some some level of inflammation there. So and that was well, before I went into independent midwifery practice, so yeah, some people do relate, increased inflammation after they've had children. And other people, funnily enough, it seems to be relieved from
Daniel Baden:so interesting is that seems to relate a lot to histamine and mast cell activity as well. So go up and down with various individuals. Yeah,
Jane Puckey:I think a lot of people are developing that. They call it mast cell disorder, but it was an unknown disorder 20 years ago.
Daniel Baden:Yeah.
Jane Puckey:Even 10 years ago, I don't think many people have heard of mast cell disorder. It's a stepped on a complaint that people are developing. Yeah, definitely.
Daniel Baden:Hot Topic. So you're going on this course and you were trying to manage the condition with the various pharmaceutical drugs that were available. But at some point in 2018, you tripped over helminth therapy. How did that happen?
Jane Puckey:I read an article by a lady called a woman called Lynn jolly, who's an author in New Zealand. And I just happen to stumble across something on Facebook really. And funnily enough, I'd heard a little bit about parasites potential potential to modulate the immune system, you know, bits and pieces that had been in the news and media over the years, but you still don't really know how to get ahold of them or anything about them. But learn that I contacted Lynn and she put me in touch with the Facebook group, Helman, epic therapy support group. And basically, it's just a wonderful resource. It's got a huge database and 1000 stories of people having success with Helmer. And it's all recorded meticulously and all the research that scientists are doing all around the world. And that group made a huge difference for me, because obviously, you can you just can read other people using it and, and all those other resources they have there. Yeah,
Daniel Baden:Do they have case stories from around the world on there.
Jane Puckey:Yeah, that's right. It's a worldwide community. And as I said, it's now up to 1000 stories recorded there, and only one every so often people will record their stories and in a sentence, so there's literally there's about conservatively, there's 7000 worldwide for selftreaters, but that data was taken years ago, it's probably double that now.
Daniel Baden:i remember being at a conference in London four or five years ago, and there was a company that had set up some information on him in therapy back then. Some pretty extraordinary results. So we're talking about you in one second, I promise but from the patients you've seen what would be the worst patient that's coming in what sort of condition would they have come in with?
Jane Puckey:Well to be honest scleroderma is the pretty out there in length. So longevity that the original woman that I read her story, she's in remission, and she's got lupus, but I've got other people that come to me with scleroderma, and some of those repeating benefits or actual full remission. scleroderma is a difficult condition because of it's all systems component. and it takes a while it's a slow modulation, but the quickest ones are things like eczema, allergies, asthma, they tend to be responsive, early on, you know, within six months to a year of treatment with Helman therapy.
Daniel Baden:What sort of age groups would you apply the Helminth therapy to?
Jane Puckey:Well, there's people giving it to their children that from about nine months old, and it's particularly good and children, particularly children are so responsive to how manifests syrupy things like children, things that have been featured at things like the X rays and the allergies, food intolerances and pain. Like, if you had a pediatric autoimmune disorders with the same brain and, and the symptoms are, you know erratic behavior and they're often a diagnosed with autism, that actually that can be triggered by some sort of viral illness and they get this brain inflammation,
Daniel Baden:usually strep , I was actually the mc at a pediatric conference last week where that was the key focus.
Jane Puckey:And the stories about Honestly, when I first read them, because I've been a nurse for 30 years, and I really haven't come across much in the way of, or any stories of remission. So for me, when I started reading the stories of remission, it was very profound to me, you just don't get it. It's just not the thing you don't get from these disorders. In the stories of parents going through the trauma of a child with this pediatric brain inflammation, you know, the heartbreaking and then profound relief
Daniel Baden:in 1989, as the hygiene hypothesis was first waved in front of us. I think, in Japanese, they call it the old friends theory, where humans have this relationship with the various bacteria in our gut and the various parasites that normally live there, which as I said, in the intro diminishing over time, and we've seen that with the increase of many autoimmune diseases, they just seem to be increasing year after year. allergies and asthma, as you mentioned, are part of that syndrome. My fear is that it's gonna get worse after COVID Because as a population becoming more and more hygienic, but with the excessive messaging around hygiene now after COVID, I think we'll lose more all friends. And I suspect over the next few years, we'll see another leap in the increase in some of these chronic autoimmune conditions, and even the minor allergies and that sort of thing in children especially.
Jane Puckey:You're right, because I think you see, on the media, you see people hosing down streets with antiseptic solutions. Yeah, as a COVID measure and people being hyper vigilant. And most of the microbes around us are our old friends. It's very few. There's pathogens that are dangerous for us. And sometimes people can get a bit mistaken about all all microbes are free. And there's some that are not good for us at all, like Epstein Barr Virus. But by far the majority of microbes around us are harmless and are actually interacting with their immune system in a beneficial way.
Daniel Baden:Okay, so coming back to you, Jane. You were diagnosed, you'd been on some therapy you discovered in 2018 helminths and what was the next step you took?
Jane Puckey:I took the Necator americanus, which is the human hookworms. So when I say human hook worm, it doesn't live in any other creature only humans, right? spends part of its lifecycle and soil. And then a human will come along and steep on step on the awkward middle, penetrate the skin and live happily in our intestines for the next year, or two or five or 10.
Daniel Baden:I read one paper somewhere that said, the necator americanas can live in a human being for up to 18 years. Have you seen that?
Jane Puckey:18 years I've heard 10 years as the outside limits, but there might be something else I haven't.
Daniel Baden:it's regarded generally as a commensal parasite is that,...
Jane Puckey:yes, it's completely harmless to humans at the right dose. The trouble is in tropical areas where they have no sanitation and feces does go still into the soil. But it's not a normal, sporadic kind of human population situation. There's big overcrowding problems. So there's the you get this huge overdose of hookworm in that soil and people then get a huge overdose and can be harmful for people who are not particularly people are not used to hookworm, but also children that are getting you know hundreds or 1000s at one time, that's not a good idea that can make you quite unwell. But and how I'm gonna affect therapy people just take controlled doses of them and they don't breed inside you so that it's impossible to get an overdose you're just only ever here what to take and and the helmet effect community recommend starting with a low dose of five Tomioka, so we call them in a. So that's a that's a minut amount in the studies that are using 20 or 30 or 40 to start off a trial. And so that by an order of 10 or 20 times more than clinical trials around the world,
Daniel Baden:correct me if I'm wrong, but things like necator americanus and other Helminth's excrete Various peptides that potentially change the microbiome to our benefit the right dose. Is that how they work?
Jane Puckey:yes, that's right there. So they have these excretionary products and they found some of them, there's Es 62, excretatory product 62 And, and others that actually don't directly interact with the immune system and have the effect of calming the immune system down. So it dampens inflammation. And without the hookworm, we don't seem to be able to do this function on our own. They have a actual symbiotic relationship with humans because we've evolved with them from pre human times, it's thought so our immune systems a little bit lazy without them because we've basically always had them until modern times, always had these worms in our tummies and hope will or other Hellmouth, you know, will vary from country to country. So we have this absolute dependence on them to modulate our immune system. And this is why we're seeing this huge increase in allergies, asthma as and autoimmune conditions, as well as potentially metabolic disorders like diabetes, type two diabetes, that's actually been studied now in Australia at the James Cook University. So there's been a trial going on there. Right, metabolic disorders, and is mostly the south treatment community has been focusing on allergies, food intolerances, skin conditions, so as an autoimmune, and now people are starting to start self pleasuring for diabetes, but not very many of them. This is new, the science is just coming out on that.
Daniel Baden:Look, there's a few studies that have gone back a few years supporting the use of helminths, I'm wondering why it hasn't caught on more in society, I suspect is because people, as you said earlier, kind of are a bit afraid of taking parasites, because there's been, you know, in modern society, such a push about taking anti parasitics, whether that comes from both the pharmaceutical side, and also the natural health side. There's been a lot of anti parasitic herbal formulas and all this sort of thing,
Jane Puckey:I suppose that comes about because there are parasites that you don't want to have. There's nasty parasites out there that net, you know, you get the big publicity about where they end up somewhere in the body that they don't, you know, fish obviously not belonging there. So you get this bad publicity. And those parasites are not what is used and helminthic therapy, only. There's only a few parasites that have been identified so far. Better safe, but human use. So nicotrol americanas is one of them is a curious service, and is HTC, which is the (?) might not be saying that well.
Daniel Baden:It's going to be hard to argue with you on that pronunciation. So I'll go with
Jane Puckey:let's go with that one.
Daniel Baden:When people take anti parasitic therapies, does it impact on the helminths that are beneficial to us?
Jane Puckey:Oh, yes, I think it might not kill them all. But basically, they're getting more and more efficient at killing off hellmouth with medication. Yeah, yeah. So so it kills them off. But the main reason we don't have them is because of sanitation systems, because they have to live part of their life in the soil. So feces and you know, before we had searched systems would enter the soil, and then add the right temperatures and the right humidity that hatch again, and then a human would come by and step on them and get another helmet on board that way. But that doesn't really work in modern society. Anyway. Without sewage systems and tropical eras, areas, they are getting bigger versions of them, which is not a good idea. Obviously. Having said that, there's there's now studies in India and Malaysia, people are living near not quite tropical, the more subtropical and they've got quite big burdens of helminths and as long as they've got a good diet, and they're healthy people, you know, they're not in a famine or war situation. People seem to be actually don't know they've got them and they don't have autoimmune disease, or very minimal, miniscule amounts of autoimmune diseases or allergies. And they've got these quite big burdens of helmets that are not doing them any harm at all. All individual might have a problem, but it is a population level. They find it that when they treat those people with anti helminth medication because they came up positive on a test not because they were unwell. I tested the population they came up because of a healthy population. They gave them anti Helminth medication, and then suddenly they're tracking these people and they're coming up with insulin insensitivity. And atopic diseases like, you know, eczema, and asthmas. They didn't have prior Yeah, I mean, those those measures that will stop
Daniel Baden:I think for many years helminths, and the appreciation for them in human health was completely the heavy burden, though, so probably that's not such a bad misunderstood. I remember reading years ago that the United Nations Health Department gave Africans thongs flip flops jandals in your talk, to reduce the ability for helminths to enter into the bottom of the foot in Africa. Yeah. And that, to me, just suggests that they didn't quite understand the benefit. idea, because you still probably get inevitably get some burden, which has been good. A light versus good. Heavy is not good. But it's the medication, I think, and also, there's antibiotics that are implicated in all this as well. So antibiotics are killing off the bacteria and our microbiome. And their helmet seems to have a relationship with not just our own immune system directly, but indirectly through the bacteria so that the helmets can have their good effect via the microbiome. So when you impact the microbiome by antibiotics, then part of the good effects on the Hellmouth also is impacted. Yeah, I learned a fabulous word from you last time we spoke which was sometime ago, you said a helminth is a macrobiotic. I love that because we talk a lot about micro biotics. But macrobiotic is described as what the potential of this ..
Jane Puckey:being big buddies that were missing, and then on friends hypothesis, that's one I like better than the hygiene hypothesis, or, or the biome depletion theory, because it's some some of our species, not all microbes, there is those pathogens which need to keep washing our hands for, you know, in case these pathogens that you know, that are going to cause disease. You know, there's arguments people say that maybe we should be catching more diseases and see, but I don't know they can actually trigger autoimmune diseases. So I'm not comments on that one, but certainly the microbes that are not doing us any harm outnumber them, you know, nine to one, and those ones were wiping out this huge range of knots, as long as we don't get any more at all.
Daniel Baden:Jane in 2018 You started taking the helminths. How did you take it? Was it like a capsule or was it like a little bowl of spaghetti or ...
Jane Puckey:comes in a little amplule with water and inside the water there a helminth
Daniel Baden:with a single Holman?
Jane Puckey:Well, I took 10 to start with, but the community don't advise that they advise starting with five but because I was on prednisone, that actually helps with any potential early side effects because we're not used to them. So when we first introduced them, they can be utami rambles. I didn't get any side effects because I was on steroids and snap pretty well eliminate all side effects and mostly you can never say 100% is a big word, isn't it? But certainly for me, I didn't get any side effects
Daniel Baden:for five years after you started taking it. You had no flare ups?
Jane Puckey:None, no, I've had no flare up since in fact,
Daniel Baden:wow, that's amazing.
Jane Puckey:since 2018 have not had not flared and I was flaring every three months in that I've also weaned off prednisone completely. I haven't been on prednisone for a couple of years. Don't really slowly because I was completely you know, addicted. So physiologically addicted to fitness. So I had to do it really slowly.
Daniel Baden:Which is the best way to come off prednisone: slowly. Have you added any other helminths to your regime? Are we just stuck with necator?
Jane Puckey:the necator americanus took me took my CK reading and I mean I didn't need the CK reading I felt much better on us you know doing way more physically I was off prednisone but the CK reading was fascinating because it normalized straightaway it came back into the normal range with the nicotrol Americans those always at the top of the normal range, I mean normal zone but it was at the top of the normal range. And so I thought well maybe I can get some more benefits eventually I thought of that idea and took another a second species so I take two as he is so which is which is the pig whipworm that so I curious sewist over I take that as well. And when I took it almost straight but well before and expertise because my next blood test came in it now the CK is dropped to the mid range. That's the only thing I changed at that time. It was like a miracle for me because all of a sudden I was climbing up hills then which always defeated me really going uphill. Since that time I had myositis scleroderma Yeah.
Daniel Baden:When you started with the pig worm I'll call it as I can't pronounce it properly. Did you find yourself then coming off the necator or did you just take them both at the same time?
Jane Puckey:I just keep on with both of them?
Daniel Baden:How often do you take them? Are these things easily available? I mean, how to
Jane Puckey:So necator americanas I take every few months though some people need it more regularly than that. You have to each individual has to experiment with the interval and And one of the providers are all listed on the dose to a degree. And in the end, you come to a balance with yourself what you think is giving you the best benefit. So people get ahold of this sort of thing. I take 10 necator every three months. And I am with TSO, because it's not a natural human worm, it's one we're well therapy support page Helminth effect therapy support page, accustomed to because it's been domesticated pigs. I take every fortnight our immune system wipes it out after about 10 days or so. So you have to get you have to take that one very regularly.
Daniel Baden:right. Okay.
Jane Puckey:thats a Facebook group.
Daniel Baden:Well, it sounds as though and I'm sure it's the case where people are much better off working with a practitioner who has an experience like yourself.
Jane Puckey:There's decisions to be made, you know, some people are really happy to be self treaters, and they read all the information, they just go ahead. And other people would like to help with their particular situation, or their particular disease in their particular situation with the medications, that so they would like a therapist to help them.
Daniel Baden:are there any patient types that shouldn't be taking them at all?
Jane Puckey:Well, I think if people are very acutely unwell, that's not a good time to introduce another organism to your body, that you do have to adapt to it. And in the very early stages, they might be dealing with side effects. So if you're desperately unwell, then you need to wait to your better
Daniel Baden:what about people that have chronic immunosuppression issues? Or are on immunosuppressive drugs?
Jane Puckey:And that's, that's actually okay with if you're facing an immune condition and you aren't immunosuppressive drugs to treat that autoimmune condition that's well established with the self treatment community. In fact, it can be very helpful because the people that are on those medications don't tend to get any side effects from introducing Hellmouth. It can be so in the early days, it can be helpful just like it was for me, I was on prednisone. And it was helpful. I didn't get any side effects. So those people, particularly with bowel disorders, that are you know, you know, because the hookworm hooks into your antihistamines. And if you've got a disorder of the bell, you might get more side effects and a person that is treating no bowel disease. So being on medication can be quite helpful. Or the species might need you, you might be better off with tea, so over the hookworm, because TSOs does seem to have a really good side effect profile. Doesn't it's just unlikely to get certain effects of tear. So it's been well studied and bowel disorders.
Daniel Baden:Are there any other safety concerns around taking helminths?
Jane Puckey:For most people, there's no safety concerns. There's some things around those people with very serious lung disease, they probably don't want to take the hookworm because it does travel via the lungs to the intestines. They're actually finding that the hookworm is really good for lung disorders like asthma. But it's really serious, then that's something that you might want to take the CSR again. So there's a few decision points. Yeah, my old Lyme disease like asthma, then it seems to be not causing a problem.
Daniel Baden:You're a you're a trained nurse and midwife. And through your through your medical training, you would have been taught to travel down a certain path, I would have imagined that something like this would be quite confrontational. To your training. How did you adapt to that change?
Jane Puckey:i think I'd been on the medical route for a long time prior to taking them and it hadn't really helped me, I wouldn't have had them to help me that might be too severe. Because I think it kept my disease in check. But it didn't really bring me to a state where I could exercise again or, you know, experience those things that I really wanted to so I wanted to live a full life. And I wasn't able to do that. And the medical treatments didn't help me achieve that. Really. They just helped me keep things in check and get in any worse, which is a good, that's a good outcome. But it wasn't good enough for me. Basically, for me, I felt like I had to take the reins. I had to do my own thing. You have to wait so long, isn't it you know, I have a lot of faith in medicine. See, it's got it's got a lot of research. And it's, it's there's been a lot of successes with medicine, but in order of disease not so much,
Daniel Baden:what's the biggest hurdle that you find with patients that you want to suggest a home in therapy to?
Jane Puckey:I think it's a lack of faith sometimes. If they come to me asking for advice, they will they've usually done by reading themselves, and they really just wanted to make choices of species, and when should I start and timing of a lot of things. So people come to me and fine, but if I talk about it a lot, because I want to share this because it's profoundly life altering. And it's, you know, I think the root cause, hear a lot about root cause. But I think this is the reason why people are getting all these allergies and autoimmune disease, this is the underlying cause. So I talked about it, because I want people to know that there's an answer
Daniel Baden:theres an epidemic of mental health issues. In Australia, New Zealand, America, the UK. And I was reading that helminths can provide some benefit in that respect. Have you had any experience in that way?
Jane Puckey:Well i haven't personally had that experience. But people are reporting that maybe they're taking a helminth for the bowel disease, but actually, then their depressions cleared. So self treaters are talking about mental health a lot and hit finding some degree of success with it. But there isn't really there, isn't it studies to back that up that's coming from Self treaters, and there's 1000s of them. So yeah, it's not just that isolated stories that people's mood tends to live in. Maybe it's because they have disorders. That I mean, that's certainly for me my disorder. So I mean, I didn't have a major depressive disorder, though. So no,
Daniel Baden:but there's also a chemical relationship between a healthy microbiome and mental health as well. Yeah,
Jane Puckey:I mean, it makes perfect sense that that would help mental health.
Daniel Baden:Yeah. Amazing. Love your story. Love what you do. How do people get in touch with you?
Jane Puckey:Have got a website? You could put the website on your link, I can send you the link. It's
www.https://www.biomeora.com/
Daniel Baden:Thanks. What does that mean?
Jane Puckey:biome and then ora in Maori Is health, healthy biome.
Daniel Baden:Today, we learned some indigenous New Zealand language as well. Thank you. It's okay. All right. Well, look, that's just great. And I, thank you so much for spending some time with me. And likewise, thank you, thanks for doing what you do. Okay.