Pyrrole disorder or pyroluria is believed to affect up to 10% of the population, but what clues should we be on the look out for when each case can present quite differently?
Today we are joined by naturopath, Jules Galloway who takes us through her professional and personal experiences whilst managing pyrrole patients. Jules also shares her wisdom on crafting treatment plans that match the patient sitting in front of you and their unique presentation.
Covered in this episode
[01:05] Welcoming back Jules Galloway
[02:05] Jules’ experience after her pyrrole diagnosis
[07:35] How are we defining pyrrole disorder?
[12:32] Symptoms of high copper
[17:29] Referring for other issues while treating for pyrroles
[20:52] Testing for and assessing nutrients
[23:23] Dosing strategy: gentle titration
[27:46] When treatment isn’t working
[30:12] Methylation and pyrrole disorder
[33:25] Personalised care
[35:17] Dietary interventions
[41:39] The future of pyrrole research
[45:59] Pyrrole resources
Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook. Joining us on the line again today is Jules Galloway, who's a passionate naturopath, speaker and podcaster. Diagnosed with pyrrole disorder, chronic stress and fatigue, and a couple of pesky gene mutations thrown in for good measure, Jules has learned the importance of nourishing herself using whole foods, supplements, happiness, gratitude, and a good dose of humour.
With over 12 years of clinical experience, Jules has made it her mission to help women recover from fatigue and burnout. She's guided thousands of women back to health through her e-courses, e-books, podcasts, and her blog, and she's also the founder of a brand new apothecary in Byron Bay. Jules has a special interest in recovering from burnout, gut issues, and pyrrole disorder, and it's pyrroles indeed that we're discussing today. Welcome back to FX Medicine, Jules. How are you?
Jules: Good, thank you. Thank you so much for having me back again.
Andrew: Now, as I said, we're discussing pyrroles, but from a clinician and a patient perspective today, because, as you say, you are quite open about it, you've been diagnosed with pyrroles. So what is pyrrole disorder from the science perspective, and also, how does it affect you as a patient?
Jules: So, as a patient, it's affected me greatly, and that ended up leading to me learning about it from a science perspective. But from a science perspective, it's simply that a person is making way more of this particular substance called pyrroles than other people. When people are stressed, or traumatised, or exposed to oxidative damage, or pollution, or if they have leaky gut, they…you know, if they've got this genetic predisposition, you know, they are more likely to make elevated amounts of these pyrroles and that's where you run into problems because it ends up depleting your body, in B6, and zinc, and a few other little trace elements.
But from a patient perspective, it was really interesting because I've lived with this all my life, but I had no idea what was really going on. I knew I had niggly little health issues when I was really little. I got every cold and flu and problem that came along. I had leaky gut, and food intolerances, and gut issues. I experienced a lot of trauma myself as a child, so I went through a lot of stuff because of that. So I had, you know, a stint of having anxiety and depression, and I've also had a lot of hormonal issues, etc. So I've had all these different things going on that, you know, I'm glad that it happened because it's what led me to become a naturopath because when you've got all those things going on in your life and the medical system isn't offering you answers, sometimes it sets you down that path of looking for an alternative. And that's great because it's led to this amazing career and this passion that I have.
But, yeah, basically, in a nutshell, what happened is that as soon as I found out I had pyrrole disorder a few years ago, I stupidly, some would say, wrote a blog post about it, and that blog post gained a lot of attention. And, of course, then the people who read the blog post assumed that I was the one to help them with their pyrrole disorder, and they started booking in. And I was like, "Oh, my God. I haven't even sorted it out in myself yet. I better hop to it and learn what is really going on." So I was, like, just head-down, bum-up, you know, devouring every bit of information that I could and every bit of training that I could whilst also experimenting on myself, of course, because, as clinicians, that's what we love to do, and the people kept coming, the patients kept coming.
So, you know, I got mentoring, I was devouring every bit of research that came my way, you know, in the hope that I could get on top of this because it seemed...and this is a few years ago as well, it seemed that there are a lot of people out there who had pyrrole disorder who were looking for answers, who hadn't managed to get their treatment dialled in yet in terms of knowing the right supplements, and the right diet, and the right combination of everything. And it didn't at that time seem to be a huge amount of experienced practitioners out there who had seen a lot of these cases. I think now that's changing a lot. So, yeah, I had to learn it all very early on. And they often say that like attracts like, so, of course, I've been attracting people who had pyrrole disorder to my practice because I do believe that a lot of the time you're attracting clients that are reflecting something in you that you've either healed or need to heal.
Andrew: I like to take the stance of the sceptic, you know, like if somebody had anxiety issues and constipation, or gut issues, or bloating, the old-style practitioner would say, "Well, you know, there's IBS, there's hormonal dysregulation, there's some anxiety and depression, and that's because of some experience and things like that." So I'm reminded by what Mark Donohoe taught me, and that is, you know, if you hear hooves, think horses, not zebras. But I remember making the salient point to him, "Except if you're in Africa because then there's a damn good chance they're zebras.” So and it’s this…
Jules: And maybe the zebras, the pyrrole zebras all live in Byron Bay.
Andrew: That's right.
Jules: I literally had a conversation with...it was actually a friend of mine when I was doing roller derby back in my very brief roller derby stint, I would say, before I realised that roller derby causes you to break, and that pyrrole disorder causes you to break more easily. But, yes, one of my roller derby friends, I was sitting with her one night and we were talking about how my two closest friends found out they had pyrrole disorder, and how she had friends who had pyrrole disorder, and now suddenly attracting all these clients in Byron Bay who had pyrrole disorder. And I said, "What is with Byron Bay and pyrrole disorder?" And she said, "This is where the pyrrole people come to heal."
Andrew: Ah. Now, I am reminded there by something Rachel Arthur said in a blog, and she said, "I recant, I recant," when she learnt, she sort of accepted pyrrole disorder. And it's something that...like, I still battle with it. I'm not there yet.
Jules: It becomes a disorder when your body is creating them in large enough amounts that they're starting to deplete your zinc and your B6. And there is a lot of information coming out right now, and a lot of research, and a lot of discussion, and discussion is really good. And, yeah, there's a lot of scepticism, and I welcome that because I think we don't know everything there is to know about this by a long shot yet. Like, for example, we know that it runs in families, but we can't figure out which gene is involved. So there's still so much yet to know. But there's a lot of...you know, just to preface what I'm about to say as well, but there's a lot of interest in getting the terminology right at the moment as well.
Jules: So we're referring to it as pyrroles, pyrroles everywhere, you know, and people are calling pyrrole disorder, pyrroles instead of its correct term, which is either pyrrole disorder or pyroluria. We're just like, "Oh, yeah, that person's got pyrroles."
Jules: But, actually, there are more technical and more correct terms for just in the way that we used to call it adrenal fatigue, and now we call it HPA axis dysfunction.
Andrew: You got it.
Jules: Just so that, you know, everyone out there knows, yes, there are more correct terms. There's a term called hydroxyhemo pyrrolin-2-one, or HPL, and I'm only going to say that once today. And, you know, that's replacing the old term of kryptopyrrole…
Jules: …which is like the other...yeah. So, you know, I needed to preface it with that because when we're saying at what point does it become pyrrole disorder, that's up for contention as well.
But it does come back to that kryptopyrrole, or HPL tests and the reference ranges in that test. So basically if a person is making too much of this substance, it's going to show up on a urine test, but the reference range of that urine test is a massive point of discussion at the moment. It used to be 0 to 10, was the reference range, then they were like, "Ah, you know, if it's over 10 and less than 15 or 20, you should be calling it borderline pyrrole disorder," and it was like, "Okay, yeah. Cool." And then it became, "Oh, actually we think that maybe the reference range should be 0 to 20," and that seems to be what's widely accepted in functional medicine at the moment as either borderline pyrrole disorder in some people's books, or actual pyrrole disorder.
And then the other day I saw a test that came back from a lab that I don't normally use because a client came to me already with this test from a different naturopath, and that test had a reference range of 0 to 40. So she had a reading, I think it was, like, 28 or something like that, and she said, "My naturopath told me a long time ago that I don't have pyrrole disorder," and I'm like, "Well, in my book you do." And so there's a lot of discussion about that as to exactly at what point do we call it pyrrole disorder? And at the moment it’s…the goalpost keeps shifting.
So for me, it comes back to good old, you know, Naturopathic 101 from the '90s, you know, or earlier where you go, "Does this person have the symptoms of pyrrole disorder? And if so, proceed, and then test. And then even if they're in that borderline range, but you believe they've got a lot of the symptoms of pyrrole disorder, move on to the follow-up testing." For me, it's not about the label we put on this condition, if you want to call it a condition. It's not about the label that we put on this. It's about how it's affecting the body. So with my clients, I often quickly gloss over, you know, what we're going to call it. Is it borderline? Is it pyrrole disorder, blah, blah, blah? And we move on to like, what's your zinc doing? What's your copper doing? What are your other markers doing around that copper? What's your ceruloplasmin doing? What's your free copper score? Because we quickly need to move on and see how is this pyrrole disorder affecting the human?
Andrew: And we tend to forget about that when we get lost in labs.
Jules: Yes. Yeah, especially if those reference ranges are so hotly debated and the goalposts are moving, like, you know, does that mean if you see a lab that says the person's fine, is the person sitting in front of you fine? If they've got symptoms that you think are pyrrole disorder symptoms, forget the labs and go and start testing their copper. I've had people who've come back negative for pyrrole disorder on a test who still had all the copper symptoms.
Jules: Sure. So, again, just to take a quick little backtrack here, with pyrroles, you don't...or with pyrrole disorder, you don't just have high copper issues, but you've got your low zinc and your low B6 issues. So there is some crossover between that in that some of the symptoms of low zinc and some of the symptoms of low B6 can also look the same as some of the symptoms of high copper, for example, like hormonal issues when you've got low B6 can look very similar to the issues or dominant issues that you quite often see with high copper.
So, just so you know, you need to look at all of those things at once, that, okay, high copper, so, high copper, I always think of those people who...it's almost like any heavy metal toxicity on the brain-type picture. So I often see similar things in people with other heavy metal issues. There's a lot of neurological stuff. There's a lot of mental health stuff. So we're looking at adults who are quick to anger, like people who have real mood instability, like their moods change at the drop of a hat. They go from zero to very angry very quickly, and often they will say, "It was for no good reason. Like, I don't know why I lost it like that, and I'm really embarrassed about how I lost it like that."
You often see things like shyness and introversion in a person who not necessarily fits that picture but, you know, that real social anxiety where people go to a party and be oversensitive to things like bright lights or noise, so overwhelm is really big. People who are sensitive to stress is really big. Often you'll see...I think I mentioned female hormone imbalances already, copper loves oestrogen. So copper can do a lot of things. Also in children, you often see a lot of behavioural issues. So a lot of my high-copper kids are very shy, or fearful, or anxious, or, you know, are having trouble at school, or having anger issues at home. And again, that real copper picture is that very quick to anger, kids who have meltdowns, oh, my God, like, think pyrroles.
And often it's not even a very obvious anxiety picture. I know before we hit record today, we were joking about how people don't fit the textbook, and I think with copper toxicity, and especially in kids, they don't always fit that anxiety that you're taught in the textbook at uni. Like, I had one child the other day who only loses it when they're around one specific person in the family, but not everybody, or your one specific group of people in the family, but not at school. And I eventually said, "Look, I think they're anxious," and it's like, "No, no. They're fine at school." Yeah, but they were holding it together at school and having the meltdowns when they got home. So copper can affect people in different ways, but always think like that sensitive person, think anxiety, think depression, and think that real instability around sort of that quick to lose it. That's your copper person.
Andrew: Could that also be a safety thing with the child, either how safe they feel, you know, with that person that they lose it around?
Jules: Absolutely. Absolutely. I've seen it in a few of my patients, and my patients' kids because sometimes I don't see the kids. It's funny because I do a lot of Skype consults, or I have done traditionally. Now I have a bricks and mortar business and the kids are coming, but traditionally I was always doing Skype, and I didn't ever see children via Skype. I had a "no kids via Skype" policy…
Jules: …and still do have because I think it's too difficult, but I would see the mums because the mums have got pyrrole disorder, so, of course, the mums are coming to me for burnout because, you know, I do a lot of marketing around burned-out mums, but then in the conversation, when you're taking the case with the mum, when you're asking about the family history, I would figure out that the kids sound really pyrroly.
And so, quite often the mums would say, "I pick them up from school and they lose it as soon as I get home." And it is, it's that anxiety where they hold it together at school and they know that it's not safe to lose it in that environment, but as soon as they get home to that safe place, it just all comes out. And quite often you'll also then see sleep problems with the kids as well, where they're waking in the night or having trouble getting to sleep because they're anxious and they can't settle.
Andrew: Right. How often would you use, you know, orthodox assessments like, for instance, you know, the Hamilton Rating Scale for Anxiety, the HAM-A, or the DASS? And how often would you instigate treatments like mindfulness, CBD, dialectical behaviour therapy? So what is it, DBT? You know, how often would you use these as opposed to, "You've got pyrroles, we need to address the pyrroles with nutrients?"
Jules: Honestly, I'm not using those tools that you mentioned as often as I guess a lot of people think I should.
Jules: I have a much more simplified version of that.
Jules: And sometimes in the conversation with the client, it's as simple as, "Tell me what your anxiety is out of 10 at the moment.
Andrew: Gotcha, right.
Jules: And what was it last time?" "Okay. Last time it was 8 out of 10, now it's 2 out of 10." "How many panic attacks have you had? When were they?” And sometimes, for me, that's all I need to know because I feel like there's so much to get through in a consult that if I get caught up in some of those systems, it just eats into our time together as well.
Jules: So it really depends. If a person has really got some mental health issues and, you know, there is something going on there with either anxiety or depression, I definitely refer them to someone who I can work alongside. I try and get them working with either their doctor, or a psychologist, or someone who can support that part of their recovery...
Andrew: Oh, I see where you're going, yeah.
Jules: ...rather than try and take it all on myself.
Andrew: Yeah, got it.
Jules: So I'm busy working from a functional medicine perspective with working through some of the supplements and the symptoms, and all the different systems of the body. I feel like I need someone else to outsource that support to sometimes because, you know, I can't do everything in that one hour, or 45 minutes, or whatever your time is with patients.
Andrew: I hear you and I bow to you. Well done. But it is...I'm pretty big on the point about inter-referral and appropriate referral, and you've just exactly said that.
Jules: But, you know, I have absolutely no problem with saying to a person, "Why don't you go and see the doctor and get that medication, you know, that they have suggested? And I will book in with that medication and give you things that still… If someone's on an antidepressant, you can still sort out their zinc and their B6, and you can help them detoxify their copper. And you can still do all that stuff in the background, whether they're on those meds or not.
Same with the anti-anxiety meds. Like, as long as you check all your drug-herb-supplement interactions, there's so much you can do in a supportive way to improve the person's biochemistry, whether they're on the drugs or not. And if at any time I think they're at a point where it's outside my scope of practice, then I'm 100% saying to them, "Go and talk to the doctor, see what they have to offer. Maybe it's time you took them up on that offer. It’s not…it doesn't have to be forever, but this is to get you through a time in your life where you're feeling very challenged. And that's okay."
Andrew: Okay. So you were mentioning about, you know, zinc and copper, we know the issues with testing or assessment of zinc, you know, and that sort of vacillates between serum and red blood cell, is that right?
Andrew: But what about...?
Jules: And a lot of labs still aren't doing red blood cells, so, yeah, you work with what you've got.
Andrew: And then there's the load test and the sweat test if you're in a lab...nobody can do the sweat test, but what about things that are readily available for a copper assessment, like ceruloplasmin? And indeed...and forgive my ignorance here, but do you ever use, like, a holo-transcobalamin as a test, or is that just not something that you consider assessing?
Jules: Sometimes when people come to me, they're on a budget as well, so again, we have to work in with what they can do and what the labs will do. But, no, I don't commonly do holo-transcobalamin. I'm still in that...call me old-fashioned, but I'm doing copper ceruloplasmin, getting the free copper ratio, looking at serum zinc, unless the person has got the money to look at other options.
Andrew: Yep. Yep.
Jules: I found it to be perfectly fine for nearly everyone except just a couple of really curly cases because remember, we shouldn't just be relying on labs, like, have a look at their nails, and if they're a Skype consult, get them to send you a photo of their nails.
Like, sometimes, you know, as much as I love functional medicine, as much as I love all the new testing, you know, when some of those tests you mentioned become mainstream and more affordable, like, bring it on. But sometimes, you know, in all of this testing and all of this science, we forget to just simply look at the person's nails for white spots.
Andrew: You're talking about zinc, right?
Andrew: Yeah. So we know that as an assessment sign in naturopathy. I cannot find any evidence for this, and yet I know that I've treated people with zinc and those zinc spots, those white spots have gone away. And you can become expert in sort of looking how long ago some stressor happened, you know, where the zinc spot occurs on the nail as it grows out from the cuticle?
Jules: Yeah. What is it? Three months before it appears. So if it's appearing at the base of the nail, that's three months old.
Andrew: Okay. There you go. So, talking about that sort of, you know, treatment with zinc, and B6, you know, how much zinc do you give? Is it just as simple as giving, you know, between 50 and 75 milligrams of zinc nocte, and maybe, you know, 100 to 200 milligrams of zinc per day?
Jules: Some people absorb zinc at different ratios as well. So are you looking at how much to give just across the board or are you going to look at the person's absorption first and how they react to it? I really…when I started seeing a lot of patients with pyrrole disorder, I was very gung-ho about, "This isn't how much zinc you all need to have, and this is how much B6 you all need to have.”
Jules: “And here's your B6, and here's your P5P, and here's your blah, blah,blah. And this is what the latest research says. One thing for everyone.” And then I realised it doesn't work like that. And it's not serum zinc. I think I said serum before. I think it's plasma zinc that I've been doing.
Andrew: Yeah. Yeah.
Jules: But, yeah, you know, I've seen people's zinc on blood test just does not budge even though you're giving them the top-top amount of zinc available. And then we switched to putting them through a compounding pharmacy and getting transdermal zinc cream for the skin, and bada bing, their zinc gets better.
Jules: So sometimes...I do understand there are protocols around how much zinc to give and how much B6, and that's amazing, but, please, please, please, take it case by case.
Andrew: I.e. don't do a protocol.
Jules: Yeah. Well, you know, know your numbers.
Andrew: I don't believe in them.
Jules: Know your numbers, but know your patient…
Jules: And know that every patient is going to be different. And also, go in gently. Like, if you...I'll tell you exactly what happens because I have lived it, because, you know, as a patient, not as a clinician, when I found out I had pyrrole disorder, I went in really gung-ho with the zinc. I was like, "Yeah. This is how much I need to take. I've read about this. Let's go." And I had copper dump. And I'll tell you what, you wouldn't wish a copper dump on your worst enemy, especially if a person's already that pyrrole sort of picture of, you know, anxious, or mood instability or, you know, depression, or whatever it is for them.
If you then go and pump the zinc in at a really high level without first going gently and supporting healthy copper removal from the body, so making sure that you're getting that copper out, and making sure you're working on the gut, and making sure you're giving molybdenum, or vitamin C, or however it is you're deciding to get rid of that copper out of the body, if you're going gung-ho with the zinc, their copper is going to actually feel like it's going up because your copper sits in all...your body is stashing copper. If you've got high copper, it's stashing in all kinds of places in the body. And as soon as you pump the zinc in and zinc, copper sit on a seesaw, remember? Zinc goes up, copper has to come down. Everyone's like, "Yeah, copper's going to come down." Yeah. At first, it gets dumped out into the bloodstream, and it crosses the blood-brain barrier, and your copper feels like it's going up.
Andrew: So, feeling what, greater anxiety?
Jules: Yeah. Whatever your special blend of high copper symptoms were to begin with…
Andrew: Ah, right.
Jules: …expect that to get worse. So if yours was getting angry at the drop of a hat, you know, now it's getting violent.
Andrew: Ah, I see.
Jules: So if your special blend of copper symptoms was anxiety, well, now your anxiety might turn into a panic attack. If your special blend of copper was something else entirely, maybe that will get worse, too.
So you have to be so careful to go in low and titrate up slowly rather than just go, "This is the number we need to aim for, and how quickly can we get there because only then are we going to get a result with that patient.” They might not need that high amount. Like, those numbers you were saying before are great, and I take really high numbers myself, but, oh my God, I tried to go from zero to hero and I suffered the consequences, and it was really lucky that I suffered those consequences because now I know not to do it to other people.
Andrew: So the caveat is, gently, gently?
Jules: Titrate up, baby. Titrate up.
Andrew: Yep. Yep. Okay. Well, let's go into more red flags and caveats, you know, because as you said, you've lived them. So, you know, what do you know from your experience, and what do your patients report when, you know, people don't do things right? And then, I guess we need to say, "Okay, well, how do you do things right in each situation?"
Jules: Yeah. And it might not be that the person's not...it's not a case of not doing things right. I think it's just not having that flexibility or that curiosity around, "Okay, like, how do I treat this person like a patient and not like a textbook?" And sometimes there’s trial and error. Like, sometimes you give people what you think they need and they don't shift for a while. And, like I said, then you might have to go, "Well, why aren't you absorbing your zinc, or what's going on with your B6?" But, okay, so when people don't "do things right," usually one of two things will happen. Either the person will get worse, or they won't get better or worse. They'll just...nothing, so spend the money and nothing.
Andrew: And that's the worst thing.
Jules: I know. That's definitely the more frustrating of the two.
Andrew: You don't know where you are.
Jules: Yeah. You're like, "Why is this not working?" Yeah. So sometimes people will come to me extremely confused, as well, in that they know what they've got, but they've been taking their supplements and they're just like, "I'm confused. I thought this was going to be the answer to everything. Why am I still anxious? Or, why do I still have this thing?"
And it'll turn out that they don't just have pyrrole disorder, they have pyrrole disorder and some other stuff going on because remember, if the person's got pyrrole disorder, there's a high likelihood that they've also got some gut issues, because there's a real "chicken or the egg" thing going on there in that the pyrrole disorder can cause a leaky gut because if you're low in zinc, you need zinc to heal your gut…
Andrew: Yep. Yep.
Jules: …and so pyrrole disorder can cause the leaky gut. But the leaky gut can cause an elevation in the pesky pyrroles, and so you go round and round. And so, are you treating pyrrole disorder or are you treating the person? So if you're just pumping in zinc and B6 and not healing the gut, well, chances are their anxiety might not get better because what if some of that anxiety is due to the gut dysfunction and not the pyrroles and the copper?
So that's why I think sometimes people get the diagnosis, they take the pyrrole supplements, and then they get frustrated because they thought it was going to be the answer to everything, and it wasn't because...and some of the symptoms or systems haven't been addressed. Another classic one is methylation.
Andrew: That was my next question!
Jules: Yeah. So, all right, hit me with the question then...
Andrew: Well, the question was...okay, so...
Jules: ...before I go off on a tangent.
Andrew: ...well, you've got the poster child of SNP analysis, and that is methylation. You've got very similar symptoms with regards to pyrrole disorder, or HPL, or whatever you want to call it. So how do you differentiate? Do you do automatic testing to tease them apart and say, "What have you got?" Do you go on symptoms? How do you help these people?
Jules: Yeah. Well, it's dead handy that the lab that I do a lot of my follow-up testing with happens to...in this one profile where they do the copper, the zinc, the ceruloplasmin, and the free copper, they also happen to throw in a histamine and a homocysteine. So, often when you get that one test result back...I don't know if I'm allowed to mention brand names or companies, so that's why I'm being cagey. So, when I get this test back, it often gives me clues as to how they're methylating without having to do a full analysis of SNPs because, remember, SNPs don't tell us how a person's methylating.
Andrew: No, that's right. It tells the previous position.
Jules: It's a massive misconception. And it happened to me again just the other week where I had a practitioner say to me, "Oh, so the person has these SNPs, so I've given them, you know, the supplements to help them to methylate better." So they basically treating them like an undermethylator before testing for undermethylation. All they had to go on was the SNPs, and I'm like, "Okay. Just because a person has a MTHFR SNP, for example, doesn't mean that they're undermethylating. Like, if you give those supplements to someone who's overmethylating, you're going to have some issues, shall we say. Yeah.
So you can't just send someone off and have a look at all their SNPS and then know what to do. I think you still have to go back and look at, how is the person methylating? So you can choose to do a whole blood histamine, but of course, that in itself is a whole other discussion because histamine oscillates from one end to the other, like, it varies from day to day. Like, if I test my histamine five times in a week, I'll get five different readings. But, again, you can also look at the person's symptoms and see if their histamine is correlating with the symptoms. You can make a more educated guess. I don't usually, if ever, give methyls unless the person's homocysteine is elevated as well. So just because someone's got a SNP or has got histamine issues doesn't mean you need to barge in with methylfolate or methyl B-12. Either they might be fine and they might see improvement, just on activated folate and activated B-12.
Andrew: Personalised care.
Jules: Personalised care. Have a look at, you know, who's sitting in front of you, not what's on the piece of paper, but definitely look at both and then figure out what to do. When in doubt, go in gently. When in doubt, don't go straight...yeah. Actually, not "even." Just don't go straight to methyls. Go through your activated Bs first before you even look at whether they need methyls. I don't believe looking at SNPs tells us what to do with a person. And if you really want to, there's...if you really don't trust histamine as a marker, you know, don't want to figure it out that way, you can go to methylation profiles in labs. There's plenty of methylation profile tests that you can do. There's SAMe/SAH ratio testing. There's all kinds of things that you can do, but you also have to work in with your client's budget.
Andrew: Yeah. That's a big one.
Jules: Always. Especially if they've already come to you with pyrrole disorder, and they've paid $110 for the pyrrole test, and then they pay $180 for that follow-up profile that does the zinc, the copper, the ceruloplasmin, all of that, so they've already spent a few hundred dollars, and then you're like, "Hey, there's a SAMe/SAH ratio but it costs $300." It's like, "Well, do you really need that, or can we proceed without it?"
Andrew: And, you know, when you're talking about SNPs, I'm reminded that something that Ben Lynch said at the Methylation and Genomics Summit, run by Caroline Ledowsky. It refreshed me, I've got to say. Ben Lynch made the caveat. He said people keep looking at these methylation SNPs thinking, "There's the answer." He said, "Look above. Look up. Look further upstream. Look what's affecting those." It was a really interesting point.
Andrew: But the other part of it was dietary intervention. You know, that's where we got to start. So what foods do we need to eat? What foods do you and others that you treat really need to watch out for?
Jules: This one's up for contention as well. A lot of people want to look at low-copper diet, and that's a really tricky one because copper is in a lot of really nutritious foods, and if you go a low-copper diet, you're removing some pretty key veggies, for example…
Jules: …out of that person's meal plan. So I'm only using one approach, and this is only...like, I can only speak for what I've seen work for myself and for my clients in clinic in that I will use a leaky gut approach in that I'll be like, “Right. Get the gluten out, get the dairy out. Look at whether eggs are a problem or not. Get the sugar out." But, yeah, they're usually going gluten-free, dairy-free, sugar-free.
If I suspect that there are other food intolerances, maybe eggs, or no nuts, or something like that, we might do some food intolerance testing to pinpoint exactly what the best diet is for the person. But apart from filtering the copper out of the tap water, which I think is really important, I don't remove copper from the diet in other places because, you know, it’s…the person's already going through a lot. You want their nervous system, their adrenals, you know, their hormones, everything to be supported with healthy, nutritious food. And if you start removing a lot of the high-copper foods, like, is that going to be a long-term balanced diet? And also, you do need to be a little bit careful in that we don't necessarily want to drop the person's copper to the point where they have a deficiency either.
Jules: We definitely...if the copper's in excess, we want to get it down. But sometimes, you know, in a lot of the cases that I've seen, it's not always copper that's the biggest problem. It's the lack of ceruloplasmin, and that's a whole other ball game. Like, yes, we need to support with zinc to keep that copper in check. But once you've brought that copper down to a point, that free copper might still be high because they don't have enough ceruloplasmin. And I was at a Bio Balance Conference with Dr Walsh a couple of years ago…
Jules: …which was very enlightening about the whole pyrrole thing because Dr William Walsh is like the granddaddy of pyrroles.
Jules: He’s amazing. And there was another doctor there, Dr Judith Bowman from the Mensah Medical Clinic in the U.S., who'd also come out and was speaking, and she had the best analogy for ceruloplasmin, and it is, so imagine if your copper is school kids, and they're all standing at the bus stop...and because we know copper is a nutrient, right? So copper in very small amounts is a nutrient, you'll see it in multivitamins...don't ever give those multis to pyrrole people, by the way. But you'll see it in multivitamins, so obviously, you need some copper in order to make cells function well, right? This is accepted. But copper in large amounts acts like a neurotoxin and a heavy metal, so it needs to be kept in check.
So, imagine if your copper is the school children standing at the bus stop. They all need to be taken to the school where they're going to go and do the work, right, you know, and the school is the cells. So the school buses come along, which is the ceruloplasmin, and picks up all the school kids, and takes them to the school, right? Where they will no longer be causing any drama because they're at school, unless they're pyrrole kids. So if you don't have enough school buses, but you've got too many school kids, you're going to have too much copper, not enough ceruloplasmin, right, so not enough school buses to transport the kids to the school, which means you're going to have kids leftover at the bus stop. That's your free copper.
And those leftover kids at the bus stop are the ones that are...Dr Judith didn't say this, this is my own take on it. They're the ones that are going to stand around smoking cigarettes, drinking goon, and doing graffiti on the bus shelter because they're bored.
Andrew: Right, okay.
Jules: So if your free copper is like those naughty kids that are standing around with nothing to do, so they're going to cause trouble. If you had more school buses, you could get them all to the school, right? And so you need to build up your ceruloplasmin to deal with your free copper. And, you know what? You know when ceruloplasmin is at its lowest, when you've got adrenal problems and stress because, like, my adrenal dysfunction people, they're the ones with the low ceruloplasmin. And, again, it's like this…this crazy snowball effect of if you've got pyrrole disorder, you're going to be more likely to be sensitive to stress and trauma in your life. If you're stressed and experiencing trauma, you will create more pyrroles. If you create more pyrroles, you're going to be more sensitive to stress and trauma. So then what's going to happen is, of course, that's going to lead to adrenal dysfunction because all that stress and trauma, what's it going to do? It's going to disrupt your cortisol, right? So now we've got this adrenal dysfunction.
Andrew: So you've just got a quandary, you've got a spiralling?
Jules: Right. And your adrenal dysfunction's causing you to not make enough ceruloplasmin, a.k.a. school buses. And then you've got more free copper and more free copper it makes you feel like you're going crazy. If you feel like you're going crazy, you're going to be more susceptible to trauma and stress. And so it's no wonder that one of the key symptoms of pyrrole disorder is overwhelm. So, yeah, we have to work on supporting the adrenal system and getting that transportation system working as well.
Andrew: So then it comes back to this, sort of, you know, mindfulness support again.
Jules: Mindfulness support, adrenal support, giving people ways to deal with stress, removing the load from...you know, taking something off your plate, saying no to things…
Jules: All that fun stuff.
Andrew: Yeah. Now, you were mentioning pyrrole research, you know. It's lots of contention, but finally the conversations are being had, they're being made. So what do you think, or where are we headed with regards to pyrrole research in the next few years?
Jules: Oh, I would love those numbers to be set more, like it's not set in stone. Nothing should be ever set in stone. But I would love everyone to come to an agreement on, what is borderline pyrrole disorder? What is pyrrole disorder? And get all the labs to agree as well, because, like I said, different labs have got different numbers on their reports. So it's very confusing for people. I would like us to get to a point where pyrrole disorder is being more widely recognised by the medical profession out there, because at the moment I'm finding it challenging to work in with some doctors. Some doctors really get it, some doctors just don't want to recognise it whatsoever. So it'd be nice if we could all start to come to an agreement there as well.
I think we're going to hopefully start to work out which genes or which gene SNPs are involved. That would be amazing. I know there are a lot of people looking at the CBS genes as being potentially an area of research. I would love for, you know, the research to forge ahead on different types of zinc because, you know, everyone seems to be recommending different kinds of zinc.
Andrew: Yeah. And everybody says theirs is the best.
Jules: Right. Maybe they all work. Revelation.
Andrew: Yeah. Revelation.
Jules: They all work. Everyone, keep doing what you're doing. So, you know…
Andrew: Do you think that pyrrole disorder, or I'm going to say it once too, hydroxyhemo pyrrolin-2-one, okay. HPL…I did it. I did it.
Jules: Yeah. You did it.
Andrew: So, do you think that HPL might hold the answer for a lot of food sensitivities in the future?
Jules: Yeah. There might be research that comes out to reflect that, but like I said, it's that leaky gut, zinc deficiency pyrrole loop that people get stuck in that, you know, the lack of zinc is increasing the leaky gut. So I don't think it's the HPL that's causing the food intolerance, but I think it's definitely doing something to the gut lining via that lack of zinc.
Jules: What I would love to see is more research around the pyrrole disorder and its effect on moods, and also on, you know, certain health conditions that we see like ADD, ADHD. I would love to see more research around pyrrole disorder and autism spectrum disorders. That is a thing.
And, you know, like I said earlier, I see a lot of mums with pyrrole disorder, and what do you know, a lot of them seem to have kids on the spectrum or kids with special needs. So I think that solving some of that in the kids is going to help to take the stress off the mums as well. If we get some of these kids healthier, then some of these mums are less likely to burn out and then need a naturopath as well.
I'd love to see more information and more research around pyrrole disorder and the physical issues. I think that's something that hasn't been touched on a lot yet. But joint pain, you know, popping and cracking of joints, joint degradation, collagen issues, back pain, neck pain, a lot of that comes down to low zinc, high copper as well.
I'd love to see more information around inflammation and inflammatory disorders, and I do see a lot of pyrrole disorder being linked in with autoimmune conditions. A lot of my pyrrole people have autoimmune stuff. There's a lot of my pyrrole people who've got Hashimoto's. So I'd love to see just more links being made between pyrrole disorder and those health conditions because then when someone fronts up with Hashimoto's or someone fronts up with ADHD, everyone knows to go check the pyrroles, and check the zinc, and check the copper, as like a bog-standard, you know, part of the protocol.
Andrew: So where can we find out more, Jules? You were mentioning Bill Walsh, and I've already taken down, I think there was "Discerning the Mauve Factor, Part 1 and Part 2." They were by McGinnis and Walsh, et al. Any others? Any other really premiere research articles or even books that we can really learn from?
Jules: Yeah. If you've got a large supply of coffee and really good attention span, go and get Bill Walsh's "Nutrient Power" book and just immerse yourself in that for a few days.
Jules: Or if you're like me and you don't have an attention span, hello, pyrroles, set aside a few months. But I don't think that book's a be all end all because I think there's more research in different areas that has come out since then, especially around symptoms of under and overmethylation. And Mensah Medical...Albert Mensa who, you know, was out recently, you know, who had a lot to say about pyrroles as well, yeah, his work's really amazing…
Andrew: What a great guy.
Jules: Yeah, right.
Andrew: He was such a lovely gentleman.
Jules: Oh, my goodness. I've interviewed him for my own podcast, and, oh my Lord, I nearly cried. Like, he's so heartfelt…
Jules: …and intelligent, I could talk about that for days. But Judith Bowman was, you know, one of his doctors from the same place that was talking about the schoolbuses. So they're really good at explaining things in a layperson way. They do use the Walsh protocols and they work very closely with Walsh still. Closer to home, Trudy Scott. Trudy, if you're listening, we need to chat. You're amazing.
Andrew: She's awesome.
Jules: Hook a sister up. I keep meaning to run into her, and I know that day will come. I think she is amazing in what she does, and she talks about this stuff both from a technical perspective and a layperson perspective extremely well. And I do find that a lot of her information is on point and very, very thoroughly researched. Who else is good? Even like some of the Mind Forum people, they've got articles on pyrrole disorder, but I read some of this stuff recently and I think they're just...you know, I think they've been reading Trudy Scott stuff, so hey, cut to the chase and just go right to Trudy.
Andrew: Trudy's presented for Mind.
Jules: Yeah, right. Well, there you go, there’s the link. There's a lot of pyrrole forums out there on Facebook. Do not bother, give it a wide berth. There's so many people in there self-prescribing, it just hurts my brain. I went in there just to "get to know my client in general" kind of exercising that. I joined those forums so I could see what people were talking about and what problems they had so that I knew what people needed, and all I saw was people going, "How much zinc are you taking? Where did you get that from? Okay, how much should I take?" And I'm like, "Oh, everybody, stop," because, like, they're all just copying each other's protocols and it hurt my brain. So, yeah, please try not to go on there because you'll never get that time back, there'll be years of your life you never get back.
I actually do mentoring with practitioners, so you can actually just book a mentoring session with me. I prefer to do it one-on-one with practitioners if they want to bring case studies or learn about it in general because, like I said, every single patient is different. So if we're doing mentoring with case studies, every single case study is going to be different. And I think you learn just by seeing clients and working out what each one needs. So, yeah, if you need me, contact me. I don’t put stuff… the stuff I put up on my website...my website is geared more towards patients than practitioners because the mentoring that I do is only a very small part of my practice and, you know, 95% of what I do is seeing patients.
Jules: And so the pyrrole stuff that I've got on my website is more for people to read about so that they can figure out whether they need to take the next step and get tested. You know, they're basically looking at lists of symptoms and that bit of my story about how I personally felt when I had it so they can go, "Oh, my goodness, that resonates with me. It's like she's in my head, she knows me. These are all my symptoms. Maybe this is the answer. Maybe I need to get a test.”
Jules: Yeah. But it is a good place if you're just starting out, or if you need to send a client there, you know, to my website, you know, to look at things from a layperson's perspective, like, that's what it's there for.
Andrew: Cool. Jules Galloway, thank you so much. This is still a quandary. I mean, there's so much to learn. As you say, we're right on the edge of really discovering so much about pyrrole disorder or hydroxyhemo pyrrolin-2-one, HPL. Thanks so much, though, for taking us through some important parts of it today. It's awesome.
Jules: No worries at all. Thank you for having me.
Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook.