Pyrrole Disorder has gained some notoriety in integrative medicine because it's often uncovered via screening of patients with mood or "disorders of socialisation" - particularly in children.
The clinical presentation of Pyrrole Disorder has a close relationship with methylation and Dr Mark Donohoe articulates this relationship with poise.
His overwhelming take-home message is that we cannot simply take a reductionist approach when treating those who present with pyroluria by boosting them up with the required nutrients but that we must look at the bigger picture and take a broader approach in the healing journey of these patients.
Covered in this episode:
[00:56] Welcoming back Dr Mark Donohoe
[01:21] Pyrroles: a controversial area
[04:13] A disorder, or a marker?
[08:51] Are we stifling creativity?
[12:10] Diet is crucial
[14:38] Socialising and biophilia
[17:20] Reconnecting with food and nature
Joining me in the studio today is Dr. Mark Donohoe, a regular visitor to FX Medicine. And today we're going to be talking about some of the complexities presenting practitioners when their patients present with pyrrole, or pyroluria, what's otherwise known as Mauve Factor.
So, welcome, Mark.
Mark: Yeah, good to be here again. Controversial area?
Andrew: Controversial area. So, this is something that's, you know, it's sort of reached a peak and people are very interested but I don't think we're there yet as to the actual clinical significance of pyroluria or Mauve Factor.
Mark: Yeah. I think also a lot of the enthusiasm for it is when you present something let's say for a child with spectrum disorder or a child with hyperactivity is showing neurological signs, the simplistic version of, "Hey, it's all about pyrroles," is a very, very attractive view. Because there is a set formula, you put people on a treatment and you give it a name and that actually gets it into the biological area rather than dealing with the harder questions about what is a normal spectrum of behaviour and what happens with diet and what happens with other areas.
So, I can understand the attractiveness. What's happening over time though is more and more people are turning up with their pyrrole test results, say, "Here, my child," or "my husband," or someone, "has pyroluria," the kryptopyrroles are raised treat it to make them better. And the complex neurological issues are in part helped by the standard dosages, the B6 and the zinc, the things that we know that the pyrroles have an effect on. And I think what's happening a lot of the time is the deeper biochemistry of it, is not being addressed. There is a deeper, let's say a methylation disorder, or there is a deeper reason for seeing these pyrroles moderately raised.
And I want to draw a distinction. There are very high pyrrole levels which undoubtedly are associated, this is kind of Mauve disease and the Mauve Factor, and when you get to the very high levels of kryptopyrroles, there is no doubt that they are going to steal nutrients that inhibit the methylation cycle and cause all kinds of neurological and neuropsychological changes.
There's a huge difference between those that are just say in that range where orthodox metabolic physicians would say, "No, that's perfectly normal and will have no effects," and the perfect range which is as you say under 15 for a corrective pyrrole level.
So in that range where you're just outside normal ranges, there's limited value in treating the pyrrole syndrome as though it's a separate illness. When you are way outside the range, there’s very good value. And the further from that normal range that the child or the adult is, the higher the value of going down the standard, you know, brain-biocentre/ Carl Pfeiffer-type of approaches of we know how to provide the B6. We know how to provide the zinc. We know how to restore biochemical normality to those people. And you do see those kids dramatically get better in a very short period of time much to the annoyance of standard paediatricians.
Mark: Yes. I think it's a little bit along the lines of homocysteine as well. We were treating homocysteine as doctors. Why? Because heart attacks in young males, high homocysteine? Homocysteine must be causing the problem. And then you reduce one risk factor by giving a Multi-B vitamin which is what the cardiologist fill back on to. Hey, the homocysteine comes down. What didn't happen was the cardiovascular risk did not go with it. And so that pendulum swing that I talk about in medicine is, it's nothing or it's everything.
We don't have a pyroluria as a common problem. We do have it as an uncommon problem which we've well treated, transforms the life of a child. For every one of those there's a dozen kids who are in that intermediate range where a deeper look uncovers a methylation disorder, uncovers an inflammatory disorder, uncovers something of liver metabolism. So, one of the amino acid...one of the difficulties with say transfer of amino acids, and you find those ones manage much, much better if you treat the underlying condition, and you get a restoration of normal pyrrole levels as a result of doing the other job well.
What confuses it is good methylation management is also a good pyrrole management. And so we're doing two things at the one time when you manage it. It's not just B12 and folate and it’s certainly not folic acid. But when you do the full methylation you're paying attention to say S-Adenosyl methionine, paying attention to the glutathionation in the brain and in other areas of the body as well and you're paying attention to the B6 and zinc has part of that whole methylation cycle. So, a full methylation treatment also covers a pyrrole treatment at the same time.
Andrew: So, do you think maybe these two things: homocysteine and pyrroles, or Mauve Factor are more markers rather than targets? i.e. you don't treat a cleft palate with folic acid, the horse has bolted. You treat the pregnant woman and that prevents the cleft palate from happening.
However, what you might see is as the homocysteine and the Mauve Factor decrease, your treatment effects get better. Is that what you see?
Mark: Yes. I’m not saying that's not worthwhile. I mean I've discussed this with a paediatrician who's well known in the area. And I think our common view is there's a grey area where all the effort on the kryptopyrroles are not well rewarded. And it's in that area where they moderately raise but not high enough to really think of it as a disease independent of anything else.
There is much better value in going down the path of what are the genetics of inflammation? What are the genetics for methylation? What can we tell about this child's trajectory of health? And one marker of that poor trajectory of health is that the pyrroles become abnormal.
And so yes it's a signpost that we should be paying attention to the biochemistry of that child or that adult and we should be keeping things like homocysteine under reasonable control. That idea of keeping homocysteine between four and eight, I think is a reasonable goal because you can go too low. You get overenthusiastic about dropping the homocysteine as though it's an evil molecule and we don't get the same outcome.
So, I think of it as a red flag or an orange flag...
Andrew: An orange flag, yeah.
Mark: ...or a green flag. And the vast majority are in the orange flag area where if we pay attention to the biochemistry of the child often you find this. I mean this will cause a stink but you find very creative or intelligent parents where there is high neurological awareness sensitivity artistic capacity; And that puts the nervous system on some kind of edge. The nervous system of some of us, me included, sometimes, we're like draft horses where it takes a lot to knock us around but we keep on plugging along. Other people are on that twitchy edge which is absolutely normal human function. They be tend to be artists. And I see this routinely, that the kids are extraordinarily creative but not socially all that adept. They're hyperactive not because they're bad kids but because they are so bored with an educational process that it's reasonable to be hyperactive. And that loss of ability to be aware that we want normal kids as adults and parents what do we want? Normal kids to grow up the normal way, do really well in exams, and that's the goal of life?
Andrew: Because Einstein was not socially adept.
Mark: No. And he was good at PR later on in life. He did very, very well. He made great quotes.
I do also worry about that, and this was the discussion with the psychiatrist that I was talking about, the paediatric psychiatrist, the paediatrician is, "What is normality?" We have kids, ultimately dreamers, highly creative, no interest in socialising.
I went to a forum in America 3 years ago, there were 5,000 of them in one room, and they were called programmers. And extraordinary minds at a given task but no ability to even say "Hello" to the person right next to them. Is that normal? Well, these guys are taking over the world when it comes to income and job opportunities and the like.
The world is not a simple place, we have parents like myself with a view of the world from the 1960s where everybody got beaten up if they were not in the norm. And we just used straps.. and hit people and everybody has their story about how they were normalised.
Andrew: You're saying we, Mark?
Mark: Yes, they're kind of of my age, people of my rough age.
But there was a different way of dealing with variability there. Now we think of everything as pathology, a correctable biochemical difference. And I think we have to be very careful. I do have families where all are on Ritalin or variants of Ritalin to normalise them. And what's the goal? Maximising marks in exams. So, you can manipulate brains to do well in exams. What do you sacrifice for that purpose in the terms of the personality, the addictive nature of problems and other things later on?
I think we need a whole new language which is not autism or spectrum disorders as a disorder, but people who in their environment of their diet, their lifestyle, the pollutants around them, the pregnancy, the genetics, the...all of that.. have to find a place. Have to find a way for comfort and function and honour the creative, or the artistic equally to those who did massively well in mathematics and engineering, the, you know, the idea of putting art back into the whole science, maths, engineering and technology is really, really important.
And I do have this concern that we are treating normality. And I know that there are severe cases of kids who are just non-functioning who you do need to do some intervention with. I have direct experience of this. But the temptation to interfere and to give a simplistic treatment, if it does no harm that's great, if it's a drug therapy that is going to make these people addicted to something later on life, not so great.
I still come back even to those kids. Their diet plays a critical part. The number of people who come and say, "I've got a pyrrole," or "my child has a pyrrole disorder," who with a diet managed well with the probiotics, with the living foods and with eating well and with the methylation managed, maybe sometimes by supplements but also by getting to eat fresh fruit and vegetables, getting folates, the varying folates from the diet. You don't need pills to do all of these jobs.
Andrew: Indeed there's some good work or great work I should say being done by Associate Professor Felice Jacka, J-A-C-K-A. I think she's still part of Barwon Health, B-A-R-W-O-N Health down in Victoria. And she's done some incredible work along with a group with Professor Michael Burke, as well, looking at diet in psychiatric disease and indeed behavioural disorders as well. So, you know, there's reasonable evidence to show that a good diet will help in behaviour, call it management of things like ADHD. So...
Mark: But the answer is also in those areas there's no ADHD, there's a spectrum of boredness all the way to true brain hyperresponsiveness to everything. And there is a medical need to settle some down so that you do have function in life. And so this is borderline for me, is what is functional, what is this person, who's this person to become? I have a concern that we are even methylating people into submission, that we...what we don't want is hypersensitive, hyperresponsive kids that are not focused on their jobs. And so we're doing a kind of weaker job than the Ritalin but we're trying to normalise people by normalising biochemistry.
You have to step back and say in evolutionary terms, that biochemistry survived. Does biology need uniformity or does it need diversity? Diversity is tough. If you're in the wrong environment, if you're a sugar-aholic at the time where it's going to affect behaviour. This is the ideal environment to have that adverse behaviour. And the hardest thing is to stop sugars for a teenager or a kid growing up, because every party, everything is focused on sugar. But that hard work is well rewarded and occasionally you move in and you use something closer to the pharmacological agents.
And that's where I think the pyrrole treatment can really be useful. That you have simple things with low risk of harm, which can change behaviour sufficient to establish a diet. To establish that this is a manageable disorder and not out of control and something that parents feel powerless about. And so if there's a value to integrated medicine, it is that we pay attention to the needs of the parents and the child and the neuro-typicality. Do we want uniformity? No. What we want is the child to be in a range of function where they can enjoy life, where they can function in life all the time.
Andrew: There was a very interesting "diagnosis" that a British GP that I know who likes motorcycles, hello, Philip, if you're out there. And he used to flippantly use the "diagnosis," I use that in quotations, of DADD, that is Dad Attention Deficit Disorder. And it smacks of the importance of family interaction and we're really missing out on this aspect with our 21st century tablet, phablet, social networks.
Mark: I heard one this morning, NDD, Nature Deficit Disorder.
Andrew: Nature Deficit Disorder.
Mark: And that biophilia, the ability for a child to be out and find the diversity and the beauty and the stimulus of nature in its glory, has an incredible impact on a city-dwelling child. So, there are deficits which are not medical where you can take different approaches and normality is, what you believe normality to be in these areas.
There's clear pathology, there are destructive kids who will benefit massively from the control of that destructiveness. There are autistic children who are deeply involved in their own brain, where you bring them out with the pyrrole treatment and they flower. But there is a vast majority in the middle where we are treating something without an awareness or a deep awareness. We're treating a test result to achieve an unknown outcome.
Mark: And going back to the principles is still, in my mind, better than a simple pyrrole treatment or a simple methylation treatment or a simple, you know, probiotic treatment. Getting the whole lot right is life. That is a really, really hard thing to do. And with a child who is on one of those edges, it's a desperation thing to do, the parents are desperate for normality. And we have to be the guiders of that to say, "This is not pathology necessarily, this is something that you can take control of step by step."
Organise the folates that come from the vegetables. They don't like vegetables? Get them to eat vegetables. They will starve if they don't have them, then you have control of that point...
Andrew: Kids won't starve.
Mark: ...of their life. I know, they never do.
Andrew: They will grumble.
Mark: Yes. But the B12 and the folates that come from that, paying attention to the gut so absorption is good enough to ensure that they meet their needs in those grey areas of the pyrolurias. Those ones are worthwhile first steps. The supplements are a good second step to find out what could be gained in that area and to give some comfort to the parents that they're doing something to normalise. But if you overdo it, all you're really doing is just creating a better test result without necessarily changing the trajectory of the child's life.
Andrew: What's been your experience with dietary intervention, dietary changes with children with autistic spectrum disorder? And I guess where I'm going here is, do you find the addition of say cooked broccoli may be to sulfurous for some, whereas fresh broccoli they're able to handle, and sometimes it's that texture that gets them, how do you manage that one?
Mark: I don't. I grew out of that some time ago. I now have kind of grown up children. What I pay attention to is what the parents tell me about what they can do. With children who are not neuro-typical where there is variation from that. Parents have the most amazing ability to work and understand and to pay attention.
I also have a particular version and that is I trust mother 99 times out of 100 over a father or paediatrician or anyone else. A person who can look their child in the eye and know that the eyes are glazed or know that attention is drifting and know that deeply the child I think you have to have had a placental link to that child to understand as deeply as a mother does. And we have disrespected of the view of the mother.
If you ask a lot of doctors is mothers are overprotective, they're not. They are just more.…
Andrew: They're attuned.
Mark: ...aware of what is going on in the child. And the fact that we can't see it is not surprising. We were never all that attuned to the child.
So I trust mothers. What I see them doing though is the mothers get frustrated with conflicting information. One is, you should treat the pyrroles. The other one is you should treat methylation. The other one is this is all to do with parents being, you know, too slack, too strict, too something or other. None of those things are true, there is diversity in life which happens irrespective of the parents. We choose mates for unknown reasons. We sniff 'em out and we diversify our genetics, and what comes out is these glorious wonderful genetic mixes that we call children. And our job is to shepherd them through these early years of life.
I think we're in a really risky environment at the moment. We have supermarkets where there's no seasons. We have foods that are no longer foods, we have things that we're putting in our mouths that don't bear any relationship to what our digestive tract has had over a million years of evolution.
And we are fearful of every microbe that goes around the place. We have homes which are designed to kill every microbe that could possibly exist. You see the ads on TV of mum spraying dad, walking down the corridor to kill off the microbes.
So those changes have to come back to the mothers and have to come back to the groups. Kids who are highly chemically reactive should be in homes not just where the chemicals are not in the foods but where you're not using antiseptics sprays, pesticides, insecticides and those evil things that discharge a new smell every 30 seconds. So these things affect children. And if you don't notice it, all you see is kids that seem to be bad reactors. I notice it because I'm forever writing to schools about not allowing perfumes to be sprayed in classes, for the kids who are affected by perfumes, not allowing sunscreens to be used. And the classrooms that adopted see a transformation not just of the child who they thought was the problem but the kids generally. The cosmetics and the sprays, and the perfumes, and the chemicals that are used, cleaning chemicals, affect all kids' health. We're just so used to it that we regard that as normal.
So, I broaden that environment. If you control a bit of the environment, get them out in nature, bring their diets around which is really, really hard in young kids. Focusing on the broccoli, if they'll eat raw or cooked broccoli it's bloody magic because most kids just hate anything that's green and is crunchy, and I don't know how evolution got through that. I guess it was if the kid starves, they didn't make it.
Andrew: Well you know what the funny things is like I remember being a kid and we used to go down, we had our little veggie patch and we used to grow beans was what I remember. We used to grow a few other things, but beans and radishes. And we'd go down and pick the beans. They never made them back to the table because they were so succulent and fresh that we would just eat them while picking them. Seriously, we'd just eat them.
Mark: A farmer friend of mine said they're still screaming. Eat them while they're screaming.
Andrew: So, I really think maybe part of this issue is to get, A) even if you can, the smallest area of your backyard as a vegetable patch, a provider of some sort of food, getting the child involved hopefully, in tending that, that'll be great. But certainly picking them and trying them fresh off the vine or the root. You know, I remember the radishes, I just used to devour them. And that actually has this...it seems to have this opening effect of, "That is a food, I'm willing to have it."
Mark: It's not a package that comes from somewhere with a label on the side that we read to be paranoid about. It is picked and it has all the earthworms and all of the bugs over it, and we don't bother too much about those.
I come back from Canada, there's a community in Whitehorse, they have a communal organic garden. It's difficult to grow things up in the Yukon, it's too bloody cold. But they put the effort together for a garden and the eating of the food is carried out in the garden. It's a nice big area but people get their patch, but it's a shared community resource. It's real food and they're used to real food and they grow real food and they eat real food. And it is a different lifestyle compared to big supermarkets where you go in and you buy your food and it ends up in a bowl or on the table from unknown sources.
So, I do absolutely agree with you that if we could do that. Turning back time is really, really hard. We've got it...an environment now where parents are busy, dad's often missing, mum is often missing, school becomes childcare until the age of 17 or 18. And then the child is launched into the world without having had the benefits of real foods, real life, real-time eating and eating at tables and all the joys of food. And they go out and replicate it again to go back to the supermarket. This is not a conspiracy here, it's just once something is made that easy, it's really, really hard to break the habit. But that's our job, you know, practitioners, what do we do?
We have to understand this ourselves, we probably have to live it and then we have to reflect it back. I think that living foods and fresh grown foods and taking that power back to feed a family, look after a family, is step one of any pyrrole disorder or methylation disorder or anything else. Because they're not disorders, they are just simply a mismatch between the genetics and the susceptibilities and propensities of a child and what they're given in their environment and in their diet, and repairing that is hard work but once done it's a habit, and that habit keeps families healthy for generations.
Andrew: I'd be very interested in...to see if there was any research out there on social interaction within the Mediterranean geographical area because they have a traditionally social interaction at meal times. And it'd be very interesting to see, "Well, what do they do with their autistic spectrum disorder children? And what do they do with their high pyroluria patients?" Because meal time is a social interaction there.
Mark: Yes. I'd be interested to see who has...I mean how do you tell an autistic hyperactive Italian? I mean the spectrum of normality is not what we Caucasians, American-like cultures like to believe. We want everyone to be clones of the perfect child. And I think there's less devotion to neuro-typicality out there in Latin and Mediterranean countries. And I think that broader spectrum, if you walk the streets there, you see the artists, you see the recluses, you see all of them and there's an honouring of that broad-spectrum of life that we tend to want to normalise, we want to close it up...
Andrew: Close it up.
Mark: ...we want to have good results.
And I do say to families, you want the best results? Look after prenatal nutrition for the mother. Make sure they're on probiotics. Make sure they're on Omega 3s towards the end of pregnancy. Make sure that neurodevelopment goes on well. Make sure that they've got a decent diet and intake. Those are the things that are insuring the future of your child generally.
And then paying attention to the particular needs on the other side of birth. Trusting mum for when she says development is going in a particular direction, what do we do about it? And then finally the willingness to provide real foods and to provide that education back so that parents can take control of their child's health and well-being and allow that normal neuronal development rather than pathologising it and putting it into a category which probably doesn't have much relevance for the child.
|Dr Mark Donohoe|
|Mosman Integrative Medicine|
|Prof Felice Jacka: Diet and Mental Health|
|Dr Carl Pfeiffer|
Other Podcasts with Mark Include:
- The Microbiome: Beyond the Gut
- The Forgotten Organ: Adrenals
- Methylation: What Is It and Who Is Affected?
- Reducing Cardiovascular Risk
- 2015 BioCeuticals Symposium Review
- Iodine: More than just for thyroid
- Unravelling Detoxification
- Probiotics as medicine