Pyroluria is a Common “Disease”…and Also a Myth

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I was recently contacted by a reader of my blog who asked me if I’d ever heard of a condition known as “pyroluria.”

As I did a bit of digging into the medical journals, I was surprised to see there really wasn’t much to go on. However, a standard Google search brought up a huge number of alternative health sites which claimed to have the cure.

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Some common questions about this condition include “is pyroluria real?”, “how do I get diagnosed for pyroluria?”, and “can pyroluria be cured or treated?”

Before you break out your credit card in paralysing fear and start buying expensive online tests and supplements, you need to arm yourself with the facts.

Pyroluria names

Pyroluria goes by a number of names and spellings and all are used interchangeably.

  • Pyroluria (pyrroluria or pyrroleuria)
  • Pyrole disease (pyrrole disease)
  • Pyrole disorder (pyrrole disorder and pyrolle disorder)
  • Kryptopyrrole
  • Kryptopyroluria (kryptopyrroluria)
  • Mauve factor
  • hemepyrole (hemepyrrole, hemopyrrole, hemopyrole)

Origin of the pyroluria hypothesis

Back in the 1960s, during the heyday of the psychedelic revolution, the originators of the pyroluria hypothesis (Hoffer and colleagues) figured that since the effects of LSD were similar to those with schizophrenia that perhaps they could derive some insights from “trippers.”

They looked for biomarkers in the urine of subjects on LSD, one of which was identified as kyrptopyrrole. They assumed that since kryptopyrrole is present in the urine of those taking LSD and those with schizophrenia, then it must be a factor in the development of a host of other mental and physical disturbances (mentioned below).

What is pyroluria?

Pyroluria promoters claim that it is a genetically-determined chemical imbalance associated with haemoglobin synthesis (the molecule that carries oxygen in your blood). People with the condition produce too much kryptopyrrole as a byproduct of haemoglobin production and it is excreted in the urine.

Proponents suggest that this excess kryptopyrrole binds vitamin B6 and zinc, renders them unavailable for their usual biological roles, and then excretes them through the urine as pyrroles.

Accordingly, sufferers may exhibit signs of vitamin B6 and zinc deficiency which could possibly account for symptoms like depression, anxiety, mood swings, nervousness, and a litany of other suggested ills.

Pyroluria Symptoms

Aside from those listed above, I’ve highlighted a number of other symptoms I found listed across a variety of websites.

However, I think it’s important to exercise caution when “diagnosing” yourself given that these symptoms are all quite vague, ambiguous, and nondescript, and could be attributed to virtually any serious illness.

  • abdominal pain
  • abnormal body fat distribution
  • anxiety, nervous exhaustion
  • argumentative and/or angry demeanor, mood swings
  • cold hands and feet
  • difficulty remembering dreams
  • fatigue
  • frequent colds, fevers, chills, ear infections as a child
  • hyperactivity
  • hypersensitivity to loud noises
  • male impotence
  • cloudy thinking, poor memory
  • drug and alcohol intolerance
  • insomnia
  • lack of regular menstrual cycles
  • morning nausea
  • pale skin, poor tanning, sun burn easily
  • poor morning appetite, tendency to skip breakfast
  • preference for spicy or heavily flavoured foods
  • significant growth after 16 years of age
  • seizures
  • sensitivity to bright light
  • unusual breath and body odour

Pyroluria associated conditions

Similar to the host of symptoms listed above, proponents of pyroluria disease suggest it is associated with numerous other health conditions. But all are unclear about whether or not pyroluria causes these conditions or if these conditions cause pyroluria (the chicken or the egg conundrum).

  • ADD/ADHD
  • Epilepsy
  • Autism, Aspergers, Down syndrome, learning difficulties
  • Depression, manic depression, bipolar disorder, schizophrenia
  • Allergies
  • Alcohol/substance abuse
  • Criminal behaviour/violent offences
  • Neurosis
  • Lung cancer
  • Tourette’s syndrome

Is pyroluria a real disorder?

I don’t think there’s any question that pyrroles exist.  And yes, pyrroles can be found in the urine. The symptoms people experience are also likely real, but whether or not these symptoms are a cause and effect result of excess pyrroles in the urine is yet to be proven.

In a critical article by Steven Novella published on ScienceBasedMedicine.org he points out that the theory of pyroluria fails to stand up to scientific scrutiny.

Hoffer and associates contend that kryptopyrrole is found in the urine of schizophrenics, but other investigators failed to replicate these findings:

Referring to the pyroluria hypothesis, Novella adds:

“Studies in the 1970s, however, discredited the hypothesis and it was discarded as a failed hypothesis. The published literature entirely dries up by the mid 1970s. But the originators of the idea did not give up, and continue to promote the idea of pyroluria to this day.”

Based on the available preponderance of evidence, I’m inclined to believe that pyroluria is not a real disorder or disease.

Despite the debunking of his pyroluria theory, Hoffer didn’t give up so easily. Instead, he went on the offensive. Novella continues:

“In this case Hoffer decided that he was not the victim of a failed hypothesis, but rather the victim of a conspiracy of mainstream psychiatry that was simply closed to his revolutionary ideas. He founded the journal Orthomolecular Psychiatry, now the Journal of Orthomolecular Medicine – a fringe journal in which he could continue to publish his ideas.”

Pyroluria critical thinking

I find it concerning that there is so much pro-pyroluria information on the internet, yet the vast majority of alternative practitioners (located mainly in the US and Australia) are basing its validity on the same faulty, debunked evidence from Hoffer and colleagues.

Pyroluria testing

Despite evidence that suggests this condition isn’t even real, there are still a large number of websites offering online testing kits ranging in price from $80 to $150.

As you can see in this screenshot from a pro-pyroluria website (click for larger image), there is an exceptionally long list of signs and symptoms located right next to two links where you can conveniently buy a testing kit.

Pyroluria symptoms and testing kits

Pyroluria treatment

I also noted that many practitioners list symptoms on their websites next to a regimen of dietary supplements purported to cure the condition.

The way many of these sites are laid out, there is sufficient information presented (such as the image above) that can scare and convince someone they are truly afflicted with this condition. With no other corroborating tests aside from those sold on the websites or available in Bio-Balance approved labs, I would recommend people receive further evaluation and blood tests by their GP or a specialist to ensure that they don’t have a more serious condition such as cancer or other hormonal disturbances.

Closing thoughts

Based on the available evidence, pyroluria appears to be more myth than true medical malady.

  • The available evidence does not support the hypothesis that pyrroles are responsible for all the symptoms and conditions ascribed to pyroluria.
  • Alternative practitioner websites employ terrifyingly sinister descriptions of pyroluria symptoms, but also happen to conveniently offer expensive tests and dietary supplement regimens to “correct” this disorder.
  • The cause of mental conditions like anxiety, depression, and schizophrenia are multifaceted and would likely require more treatment than a few vitamin and mineral supplements.
  • Modern western medicine clearly does not have all the answers but, in this particular case, the mere belief that pyroluria exists could be more anxiety-provoking than pyroluria itself (if it were real).
  • The symptoms listed across a variety of websites are extremely broad and vague and could apply to virtually anything. My concern is that a person suffering from a real medical condition might decide to forego getting a timely diagnosis and treatment which could save their lives (i.e., early cancer detection).

Please leave your comments below. Keep your tone friendly and civil. Abusive, emotion-filled rants that resort to name-calling, shaming, and trolling will not be approved.

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About Author

Dr Bill Sukala is a Sydney-based clinical exercise physiologist, health writer, speaker, and media health expert. He has published health articles in major publications around the world and has given invited lectures across five continents. Click here for more information or follow Bill on Facebook, Instagram, Twitter, and

225 Comments

  1. Great article Bill! An excellent clarification of this ambiguous “condition”. My personal experience aligns well with your conclusions – Expensive supplements, testing and obvious conflict of interest with connected practitioners.

    • Dr Bill Sukala on

      Thanks for your comment Lana. It astounds me how this kind of thing persists. Surely these practitioners know that there is no evidence to support the existence of pyroluria. Or is it wilful ignorance because there is money to be made? I find it ironic that many critics of western medicine would point the finger at medical practitioners who prescribe drugs for illness, yet in the next breath would prescribe expensive supplements to a client with pyroluria which doesn’t even exist. Hopefully this will fizzle out into oblivion.

      • Have you actually treated anyone with pyrrole disorder? If you haven’t then I suggest that you refrain from making such statements. Pyrroluria is a scientifically measurable quantity, an inborn error of metabolism, part of the Porphyria disorder. The difference in such patients when treated are night and day. About money, mate, hate to break it to you but there isn’t much money to be made here, I can tell you that.

      • The Natural Health Blogger on

        Personally i believe “pyroluria” has real meaning, but i don’t believe we really know exactly what having an elevated urine kryptpyrrole means at this point due to the lack of research. I doubt we’ll see any new research either, unless its funded by the Autism community, another group of individuals who anecdotally often have tests exhibiting high pyrrole levels.

        Am i really just meant to believe that its completely coincidental that all these groups with “hard to treat” conditions such as autism spectrum disorders, CFS/ME, toxic metal overload/mercury etc, also conviently have elevated kryptopyrrole test readings. The curiosity in me suggests that the high pyrrole reading is not meaningless in these individuals.

        Currently my train of thought, is that an elevated urine kryptopyrrole reading may be a crude bio-marker for detecting increased oxidative stress states or possibly even heavy metal toxicity such as mercury overload, possibly even copper/zinc imbalances.

        But then again im not a professional, merely someone who was forced to help improve his own health because my range of “medical professionals” could seemingly do nothing more than offer anti-depressants or cognitive behavioral therapy, both which offered absolutely zero benefit in return and anti-depressants came with a wealth of their own side-effects.

        And this is exactly the path that those with “pyroluria” find themselves in, they tend to have a common range of symptoms that don’t respond well to any medication such as chronic fatigue, anxiety, depression, poor stress tolerance, hpa-axis dysregulation/hypocortisolism aka “adrenal fatigue”, severe digestive issues such as increased intestinal permeability, low stomach acid, frequent opportunistic infections such as candida overgrowth/dysbiosis and so on

        I had a very high kryptopyrrole urine test myself and with further private testing, managed to identify many abnormal markers that related to my symptoms and clinically improved my condition on rectifying many of these factors, some of these include errors in vitamin b6 metabolism(high pyridoxine serum level/but low PLP indicating poor conversion to active P5P), hypocortisolism, increased oxidative stress/metal toxicity, low antioxidant status glutathione and co-enzyme q10/mitochondrial dysfunction, leaky gut syndrome/dysbiosis, functional vitamin b12 deficiency/elevated homocysteine, copper/zinc imbalances etc were found.

        I find it too coincidental also that “pyroluria” is said to cause issues with vitamin b6 metabolism and further diagnostic testing did indicate that i had issues with B6 metabolism as described above(high pyridoxine/low active PLP/P5P).

        You only need to look at the research on the etiology of Autism spectrum disorders and chronic fatigue syndrome/ME to confirm that many of these issues such as glutathione depletion or co-enzyme q10 deficiency do play a serious proven role in the pathophysiology of these conditions, yet are often completely ignored or discredited as meaningless by western medicine.

        We have to remember it was only a few years ago that medical professionals discredited that “leaky gut syndrome” existed and now we have research there proving that increased intestinal permeability really does exist and has been linked to the development of many conditions. There was a recent study which found “leaky gut” to play a role in the inflammatory pathophysiology of major depression.

        Allopathic medicine certainly doesn’t have anywhere near the answers to treating many of these health problems, even depressive disorders are merely just poorly “masked” by western medicine with anti-depressants and the old “monoamine hypothesis” is looking very out-dated/lacking at this point, with recent research more focused on the oxidative stress/inflammatory connection.

        Another condition closely related to “pyroluria”, which western medicine claims doesn’t exist, is disorders relating to the methylation process such as “under-methylation”. Many medical professionals claim that “under-methylation” doesn’t exist, yet if that were true then nobody would suffer from elevated levels of homocysteine would they ? Homo-cysteine builds up in the blood due to a deficit in the re-methylation of homo-cysteine, commonly due to low levels of nutrients such as vitamin b12, folate, methionine, vitamin b6 etc.

        Again its fine to discount that “under-methylation” isn’t a true scientifically verified “condition” at this point, but many individuals clearly do suffer from health problems which result because of poor or insufficient methylation.

        If western medicine had at least a viable solution for these sort of individuals with “pyrrole disorder”, “under-methylation” etc then they wouldn’t be forced into the arms of alternative health practitioners.

          • The Natural Health Blogger.com on

            Hey Jen,

            Thanks for the comment.

            My blog can be found at thenaturalhealthblogger.com

            Having had an elevated kryptopyrrole reading myself, im always interested in hearing from others with “pyrrole disorder” and their experiences, both good and bad.

    • Yeah just give people anti depression pills that would be much better for them . ?Oh yes and much less expensive.

  2. Hi, I’ve recently been diagnosed with Pyroluria from my Medical Practitioner who’s also a surgeon and this diagnosis came about from a urine test from Nicolades Sullivan Pathology which is a large reputable pathology chain in Australia used by different kinds of practitioners and hospitals. Pyroluria is also now being taught in Nursing school as my best friend just covered it in her lectures. She is at large public university doing a degree in nursing. It seems in Australia that pyroluria is accepted in mainstream medicine and is currently being taught in health science and medical Qualifications, so this all seems a little confusing to us who are currently studying various medical degrees and health science qualifications when other professions professionals claim this disorder doesn’t really exist.

    • Hi V,
      Thank you for leaving a comment. I can appreciate your perspective as I also live in Australia and am aware that it is being pushed even by medical practitioners. However, let me make it known that I have seen a good many medical practitioners promoting nonsense in their practices over the years. I have been privy to meetings where doctors are sold on hokey nonsense because it will increase their profit margins (no, it’s not all altruism in the medical field).

      I think to satisfy your curiosity, do not take my word for it but instead do your own homework and research into pyroluria. Yes, it sounds like a scary disorder, but the big question is whether or not there is any reliable and recent evidence to support its existence.

      I am always open to learning so I would appreciate it if you ask both your medical practitioner and nursing student friend to provide you with evidence in the form of original journal articles which support pyroluria’s existence. Then report back to me with these references either in the comments section or via email so I can review them.

      Thanks for your comment.
      Kind regards
      Bill

      • I am sick of doctors stating that something does not exist just because there is not enough scientific evidence.. absolute bullshit. Every single disease and disorder was once not know to the medical fraternity, so your logic is totally flawed and reads like this – it doesn’t exist because there is no scientific study on it…. how about you change your stance to – it might exist, and with all of the anecdotal evidence, might be worth some studies. But – whoops the treatments for pyrrole disorder are supplements not drugs so no one is willing to fork out the money for a “scientific” study because there is not a nice shiny patent waiting for them at the other end. Doctors are bitches of the big pharma companies and only care about prescribing pills and lining their own pockets. They don’t care for the welfare of their patients, most of them are miserable themselves, stuck in a small jail cell of a cubicle with artificial light and stale air. I was diagnosed with Pyrrole disorder via a urine test and the following supplementation regime has changed my life. My daily mood and energy were at about 30/100 and after rebalancing my system with P5P B6, zinc and magnesium my daily mood and energy are sitting between 70-80/100 – a radical and almost overnight change. You and the rest of the MD’s should take your irrelevant opinions and anti progress thinking somewhere else or get with the program and actually start caring about your patient’s wellbeing and not just your next Novartis bonus cheque.

        • This is an example of an emotional-filled rant that does nothing to further the discussion on this topic. It also makes the false assumption that I am a medical practitioner conspiring with the drug companies to keep people sick so everyone must take their prescription meds. I’ve been listening to the same accusation for over two decades. It wasn’t true then and it isn’t true now.

          Had this commenter actually read my bio page, he’d have seen that I hold a PhD and not a MD so therefore I cannot legally prescribe medications. Moreover, I have no love affair with the drug companies at all and believe they should be used as a last ditch option under extreme circumstance (i.e., someone is going to kill themselves unless we bring out the heavy artillery).

          Just because we have different viewpoints then I must automatically be a big pharma shill. Still waiting for that big Novartis cheque that will never come.

    • In regards to supplements being a con, what about the AU$260 a week (very hard when on the pension), my mental health practitioners are pushing me into paying for DBT therapy that they say is the only help they can offer for anxiety that developed when cognition started at 2 years old. CBT is the biggest heap of crap that’s been offered. Putting a different spin on my personal beliefs does not make me feel better. I believe these things because they resonate deep within, eg. fathers shouldn’t abandon their children. How do psychologists justify charging AU$160 -200 for an hour a week or group sessions AU$80. Even my psychiatrist charges AU$300 an hour, but she feels sorry for me so makes an exception and bulk bills. For that I am lucky if I get 25 minutes before she wraps up the session. I have wasted so much money and gained a lot of stress from so called university educated therapists that I am ready to give up/in. They should just admit they don’t know why some children are nervous and scared in this world and can’t help by the time you are an adult and don’t want to intervene or label when presented with such a child. Well, now my last hope is getting my MTHFR gene tested for the 2 known mutations. It’s sad that I had to discover this information myself and when I mentioned this to my psychiatrist, she gave me blank look and murmured something about it but still didn’t explain anything about folinic acid or the methylation process.
      Thank you for allowing me to use this forum.
      Ally.

  3. That kind of leaves me in an awkward position as I’ve been unwell for years and am assuming it’s because I’ve had Pyroluria untreated for so long. I guess I’ll have to see how treatment goes for me and hope I have a great turn around because to be honest, even if there is 1729394 peer reviewed reliable articles on Pyroluria or just 1, I just want to be healthy again. I think pyroluria might be one of those odd health conditions where it seems very real to those who suffer from it yet more research still needs to be funded and conducted such as IBS (an odd comparison but I’m sure you get my point lol). I’ll do some poking around and see if I come across any reliable studies even just for my own curiosity

    Thanks Dr

    • Thanks V, good luck. Rest assured I am not discounting how you feel. Of course I want you to feel great again. If there is other evidence on pyroluria out there I’ve not seen, I’d love to be made aware of it. Thanks

      • Glad that there is a focus here on feeling well. My son and I were both diagnosed with pyroluria years ago and successfully got off anxiety meds..now both functioning well..so even if it’s psychosomatic, pyroluria treatment works for us..my son was curled up in foetal position due to the psychiatrist’s experiments with psych drugs..now he is out in the world!

  4. Hello again,
    This has nothing to do with Pyroluria but I don’t know where I should ask.
    My question is, “how does the calorie in – calorie out model, I.e. Law of Thermodynamics, explain cachexia?”
    Thanks again for your time,
    Jon

  5. I was diagnosed and treated for this and it was life changing for me. Finally after 20 odd years A Dr found something wrong with me. Science is like that,theories and ideas take a long ti me to find acceptance, and there is no doubt in my mind that research is years ahead of the practise of medicine. We accept dx of, for example ADD,ADHD, Post traumatic stress disorder and for those there is absolutely no clinical teating or proof at all and no, I am not suggesting that they are not valid conditions.. My Dr is the smartest person I have ever met, and she had in fact cured me. I gave dozens others the same opportunity and they failed.

    • Dear Christine,
      Thank you for your comment. I am happy that you are feeling better. Could you ask your doctor to provide you with the latest research on pyroluria and then send this to me? Just the references would be fine as I can dig them up on my own. I would be most grateful as I would like to update the article if these are out there. Kind regards

  6. After searching for at least 30 years I found a very highly qualified Nutritional & Environmental doctor who diagnosed my son with Pyroluria. He’s had severe anxiety all his life and not one GP had a clue about a urine test for Pyrroles! It would appear that all GP’s have a one size fits all approach and they only treat the symptom with antidepressants (including at least 4 pages of side effects) and everyone has the label of a Mental Illness (Depression, Anxiety, Bipolar etc etc) The only relief my son has ever had has been from the compounding supplements of Zinc, VitB, Magnesium, Calcium, GABA. Yes it is expensive, however the equipment used to determine the cause of my son’s severe anxiety did show he had more of some heavy metals and was his ability to absorb Vit B and Zinc was causing the imbalance in Seratonin levels. The tests were completed by a recognised laboratory in Brisbane. If more medical professionals would take the time to research the cause of a condition the world would have less ‘mental illness’ and much more quality of life. Doctors take their advice from Pharmaceutical reps who may or may not have any formal qualifications and are simply sales reps. It is simply a licence to print money and pure greed and can you tell me what training medical doctors have in nutrition. I would be interested to know what qualifications you have and what you feel is a solution to this world-wide epidemic created by drugs and lifestyle. Many thanks, Annette

    • Hi Annette,
      Thank you for your comment. Regarding pyroluria, I have no doubt that pyrroles exist and yes I know that reputable labs have tests for them. That is not in question. But whether or not they are the holy grail cure for mental illness remains to be seen. My article merely highlights that it is a condition being diagnosed by some practitioners when, as of this writing, there still exists a paucity of (debunked) data to support its existence. The sciences are ever-changing and I am happy to update this article with new reputable research reports that support pyroluria as a valid condition.

      Regarding pharmaceutical medications, I agree with you 100%. Reps are usually business graduates with zero science training other than the script they are taught to parrot back to doctors. And yes, there are doctors who are quick to put people on medications. I personally do not agree with that approach and think psychological interventions like cognitive behavioural therapy or dialectical behavioural therapy might be more appropriate. Meds may have their place in extreme cases where someone is suicidal or simply cannot function even with intense therapy.

      I do not think most doctors have sufficient (if any) training in nutrition and this is particularly why I find it disturbing that doctors write nutrition books. For as much as people dismiss doctors for having no nutrition training, it is ironic they run out and buy their diet books and hang off ever word as if it were the gospel from God’s lips. See my article at: http://www.drbillsukala.com.au/nutrition/doctors-nutrition-knowledge-settling-the-doctor-vs-dietitian-debate/

      Regarding my qualifications, I am trained in both nutrition and exercise physiology through to my PhD. You can learn more about my qualifications on my website under the “about” tab. In response to what the solution is, you answered your own question: lifestyle. Using drugs to try and fix and over-worked, over-stressed person who is eating garbage food and participating in zero exercise will never be the solution.

      Please be so kind as to speak to your doctor and ask if he/she can provide me with the latest research on pyroluria. I would be most interested to review this.

      Kind regards

      • Hi Annette would you mind sharing your practitioner details as I’m struggling to find someone decent and im in brisbane too. Thanks 🙂

        • Dr Heather Way at http://www.tgac.com.au has an excellent knowledge of Methylation disorders and pyroluria . As there’s little pharmaceutical profits to be made from treating pyrolysis there appears to be little research other than real-life success stories, which are worth their weight in gold for people frustrated by ineffective biomedicine. Interestingly accurate diagnosis and very effective treatment is occurring worldwide ‘under the radar’ so the under informed who denigrate can’t intimidate. Good luck with your quest for a return to wellness.

    • 100% Agree I also had amazing results from zinc B6 deficiency and now feel so much better after years of anxiety chronic fatigue even cancer and Im only 27 now – I wish I knew I had this problem earlier

      I think unless you go through chronic illness you then realise how black and white the system is.

      • Thanks for your comment Sammy. How long have you been cured of your anxiety? What other approaches did you try in the past (excluding medication. I’m not a fan of that)? What type of cancer did you have? I would imagine most people would experience anxiety after finding out they have cancer. Kind regards

    • Annette Where can you get the compounded zinc vitamin b mg calcium and gaba and how much of each I really need to get my daughter on this

  7. The grey area between medicine and nutrition is what Nutritional Medicine Practitioners do. They are an invaluable resource in health care. I’m glad you finally got your son treatment. I asked my GP how much nutrition she did in med school and she said 6 hours followed by “it’s way too little.” she’s intrigued by what I’m studying so she’s going to a Nutritional Medicine conference this year to learn more. Also another Dr of mine was so intrigued she’s now enrolled and studying it part time. I’m not aposed to any form of medicine however when one mixes modalities you can achieve so much both professionally and for your patients. It’s imperative to have an open mind as a closed one will just hinder ones ability to be the best health care provider they can be. I’m happy that you found a good Dr who was able to help your son! That’s fantastic news!

  8. I suggest checking out the articles on Biobalance and contacting some of the practitioners there. This organization brings a teams lead by Dr Bill Walsh to Australia each year to train our doctors in this protocol. In my opinion these people are modern day heros, saving us from very bleak lives. Modern medicine is great at keeping us alive,but spectacularly fails at giving people with chronic depression and anxiety a life of any pleasure or fulfillment.

    • Hi Christine,
      I’m familiar with the Biobalance site and Bill Walsh. I had another look over it today and to my disappointment, I did not find a single peer-reviewed article on the site to support Walsh’s theories. I did see a lot of testimonials but, from a science-based perspective, these do not separate cause and effect from coincidence. There are a lot of factors that could contribute to someone feeling better or worse outside the context of controlled conditions (ideally randomised double-blind conditions). Let me be clear that I am open to changing my views in light of legitimate peer-reviewed evidence. To date the only thing the pyroluria community has to hold onto is some debunked research from the 1970s. I think I’d like to know why the practitioners on the biobalance website, some of them medically trained doctors, would not want to see peer-reviewed evidence for what they’re promoting. That, to me, is a concern.

      • I just wanted to point out that it can be hard to fund research trials and publish in peer reviewed without large pharmaceutical companies funding the research – as there is no money in it.

        • Hi Mel,
          Thank you for your comment. I agree with you, it’s not an easy game. I’ve worked as a university lecturer/researcher and I know exactly how hard it can be to secure funding. It is a complex game of linking up with the right researchers with lots of street cred, getting their names on your grant applications, and, of course, having a strong research proposal. In the case of pyroluria, there does not appear to be a solid foundation upon which to build so most researchers would probably not bother going down this path.

          One of the main criticisms aimed at me in these comments is “if you don’t believe it, then why don’t you just conduct your own pyroluria research?” The answer to that is, as you said, it is not cheap, not to mention you’d need a research infrastructure around it (i.e., facilities and a research team). Secondly, the onus is on a theory’s promoters to have evidence to support their claims, not on dissenters to have to prove the contrary. If you think about it, any crackpot can come along with any half-baked idea, claim it to be the gospel, call all non-believers heretics, and then demand everyone else to prove it’s not valid.

        • And it would require a long running trial, expensive lab testing and a number of health professionals involved. That’s not to say that I don’t think they should conduct some research, I think it would be quite interesting.

          • Absolutely Mel, we’re on the same page. I am also quite interested to see more research on this topic. I think there is far too much airy fairy fluff out there on pyroluria and it would be good to see more unbiased and independent research and information that is not coming from websites trying to sell pyroluria testing kits.

  9. Well they certainly get results. I know of at least a dozen others who have had a great outcome from following this regimen. And Biobalance only train medical Doctors, you must be at least a GP to attend their training.

  10. Dr Sukala,
    My wife found pyroluria on the web and decided she “had” it so, I thank your for this thoughtful article. She does exhibit many of the symptoms/behaviors described in the pyroluria literature and websites, though. So, my question to you is: what other causes could there be for these symptoms? If you choose to answer, please list possible causes from MOST to LEAST likely, if you don’t mind. (Her symptoms include: anemia [confirmed by blood test], periodic vitamin D deficiency, anxiety, general nervousness, extreme shyness, fear of crowds, frequent extreme [but short-lived] anger, strong fear of confrontation to name several.) PLEASE list any possible physical causes as well as mental and emotional ones.
    Thanks again for your article,
    David

    • Hi David,
      Thank you very much for your comment. From my observations, I think one of the defining characteristics of pyroluria is that there are no defining characteristics. The symptoms listed across various websites are so disparate and vague that they could apply to virtually anything. This is what I find so disconcerting.

      As for what could be wrong with your wife, I’ll respond my saying that I have a doctorate (PhD) and am not a medical practitioner. And if I was a medical practitioner, it would still be illegal for me to provide diagnoses or suggest diagnoses online without having seen the person in question.

      At a glance, I would suggest visiting a general practitioner and get a referral to a specialist like an endocrinologist (if appropriate). I would also suggest a referral to a psychologist to address the anxiety issues and related issues stemming from this. Cognitive behavioural therapy or dialectical behavioural therapy might be appropriate if there is any borderline personality disorder present (Re: the extreme anger, please Google BPD for more information). You might find that many of the physical issues could be stemming from the emotional ones and/or vice versa.

      The other thing to consider is that your wife’s personality may just be her personality and there is nothing to “fix” per se. You might not have to approve of it, but acceptance might make things a bit less stressful for you. Please let me know how you get on with everything, and thanks again for leaving a comment.

      Kind regards
      Bill

  11. i like that you want to question the topic of Pyroluria and if it exists… What I don’t like is your assumption that the professionals treating people with it, are only out to make money. That’s a big leap…

    Perhaps the research you so desperately search for doesn’t exist because it is very expensive to run a double blind trial and funding has to come from somewhere…

    There is no vested interest from a pharmaceutical company to push for these types of trials, especially when they are making huge amounts of money from anti-anxiety and antidepressant medications.

    It has only been recently that Chronic Fatigue Syndrome has become “evidence based” and “researched” yet we’ve all known about it for decades – does that mean it only now exists because research says it does?

    I’m all for a critical and intelligent debate but defaming those who treat it is quite unprofessional – in my humble opinion… It also indermines those looking for answers and the professionals trying to help them.

    I have this, I don’t label myself with it… My training is as a Naturopath, however I am not seeing clients nor making money from selling expensive supplements to them.

    I have no vested interest other than to hope that a discussion on the topic can be intelligent, fair and professional.

    Thanks for you time,
    Jo

    • Dear Jo,
      Thank you for taking the time to leave a comment on my blog. In response to the points you raise:
      1) In all fairness, I will review the phrasing of my article and see how I can edit it to be a bit less inflammatory.
      2) I have friends that are naturopaths and I know them to be good people with good hearts. I don’t think it’s a case where everyone is out to bilk unsuspecting consumers, but I do think they may be promoting something such as pyroluria in good faith when there just doesn’t seem to be any hard evidence of its existence.
      3) As for research, I have run clinical trials on a shoestring budget in the university setting. It’s not only cashed up pharmaceutical companies who run clinical trials for profit. I should disclose that just because I trained in the hard sciences does not mean I share any love for big pharma. In fact, I think many prescription meds are overprescribed and people with depression and anxiety would be better off with CBT, diet, and exercise. I’ve personally walked some proverbial dark streets in my life and I can speak from personal experience and empathise with those who are striving to nail down a root cause for it.
      4) The symptoms listed for pyroluria are so widely varied that they could apply to anything. I think if someone does have something more serious wrong with them such as a growing tumour, then they might forego getting a proper diagnosis in time if they are taking supplements for something as nebulously defined as pyroluria.
      5) I have been in the health field for 25 years so far, and I have seen unethical practitioners on both the mainstream and alternative sides of the fence. There are people who take advantage of things like this because it’s good business. Clearly that does not apply to all pyroluria promoters, but whether it’s because they know there’s no current body of evidence to support its existence or they genuinely think it does exist because they’ve not dug into the research themselves, either way the end result is to sell supplements to fix it.
      6) Like you, I have no vested interest either But as I pointed out above, I will review the article for clarity and fairness.

      Kind regards
      Bill

  12. My son caught literally everything. He was constantly sick and contracting diseases AIDS patients would get, such as cryptosporidiasis. I worried he wasn’t going to make it past his 5th birthday as he was a bag of bones, tired all the time and grey. After coming across information for pyrrole I had him tested and started supplementing with the basics and he is a different person! Full of energy, he rarely gets sick any more and I believe it saved his life. For this person to have written this disgusting and misinformed article, I bet you have strong ties with big Pharma as you have now spread untrue misinformation. How dare you

    • Hi Penny,
      You’re very quick to make the assumption that I’m some sort of big pharma shill, but nothing could be further from the truth. I have a PhD, not a medical degree, and have no kindling love affair with the pharmaceutical industry. I promote well-being through healthy eating, exercise, and stress management.

      Being that you are a homeopath, it does not surprise me that you’re not interested in the science, or lack thereof, for pyroluria. But considering you did study an anatomy degree at Sydney Uni, I would think you’d know at least a little bit about the scientific method enough to know that N=1 is not a study.

  13. Hi Bill.

    I too have failed to find any evidence of the existence of pyoluria as a condition. I found the existence of pyrroles of course there are a lot of varying pyrroles and I could not find the existence of hydroxyhemoppyrrolin-2-one ANYWHERE!! and I even looked on images to find the molecule. Noughta!!! I am a veterinarian, so this is a somewhat neutral topic for me. But, I do have a daughter who is gifted, in which she displays quite a few of the ambiguous symptoms on the websites. Some people with sickle cell anemia may have high pyrrole levels (and a very enlarged spleen)!! So, that’s as far as I am taking it now. I do not think a plasma test for zinc will be a necessary. SHe is improving with all the things I am doing now. A really well balanced diet full of nutrition, all sorts of fats and very little free sugars (averaging roughly 2-3 teaspoons per day). Exercise is at her discretion as she is only 3!! So she gets sufficient exercise just by running around the house like a lunatic and collecting the chook eggs in the back yard. Thanks for this blog, I am very unhappy with the biobalances of the world and I only wish they could preach nutrition in it’s pure state (as a prophylactic rather than as a therapeutic) than for all sorts of ailments. And teach parents and consumers to read the labels on food and to know how to read the labels. I can say that this Bill character (and his Doctor Alison K) talked at a seminar to parents and teachers about nutrition did not know weet bix contained sugar… (as opposed to vita brits which contains no sugar, of which is why we regularly buy them along with other high fibre content cereals too just to vary it up a bit!) I was to say the least astounded by this.

    • Hi Danielle,
      Thank you for taking the time to leave a comment. I am glad to see that someone else with science training has done the research to come to the same conclusion I did. Whilst I don’t discount that people have signs and symptoms of something, the available evidence doesn’t support the pyroluria theory. And as you probably found in your own digging, the signs and symptoms of pyroluria are so wide and varied that they could pretty much apply to virtually anything.

      You also make a good point where these characters were speaking as “experts” on nutrition yet didn’t know a product which is predominantly carbohydrate also contained sugar. Sugars ARE carbohydrates. When the self-proclaimed experts don’t know the basics of nutrition, then I’d question their credibility in the promotion of “disorders” such as pyroluria.

    • My daughter is also gifted and has tested positive for pyrroles. Huge improvement after introducing supplements and completely overhauling her diet, but I want to know why she has it and how to cure not just treat it. Apparently it is quite common in the gifted and ASD community.

  14. ``Christine on

    My Biobalance trained Dr recommends a natural diet with absolutely no processed foods,hense their lack of knowledge about this type of food.

  15. Speaking as yet another pyroluria sufferer, it becomes tiresome when people in the mainstream say that they are unable to find any scientific evidence to support a diagnosis of pyroluria. It also becomes somewhat wearing when people assume that pyrroluria sufferers are gullible idiots looking for an easy solution to their problems. We would love for their to be more information available. However, the staff in HPU test in the Netherlands have compiled a list of articles pertinent to the topic written in English, German and Dutch. Mothers appears to be a bit of duplication, accounted for by translation into other languages, but there should be enough references there to keep you busy for a day or 2. I am glad to see that you are prepared to be open minded about it. The link may be found at HPU test, English language site. Look under literature.

    I believe a large part of the problem preventing pyroluria from being more widely accepted was that initially a mauve compound was identified in the urine of a size able proportion of schizophrenics on chromatography. However, identifying that compound took a long time and several false starts. Kryptopyrrole was initially suspected ax being the “mauve factor” using a process which involved charcoal as part of the preparation before chromatography. However, new rapid chromatography tests failed to identify kryptopyrroles in the urine of schizophrenics and other patients. Similarly hemopyrrole was also absent. It wasn’t until 1978 that Hydroxy-hemopyrrolenone 2,1 was correctly identified as the mauve factor. Unfortunately, following the earlier claims to have found the mauve factor, it seems that some credibility may have been lost. In addition Hydroxy-hemopyrrolenone is a very unstable molecule which is heat and light sensitive. Urine samples must be protected from light, require a preservative (eg ascorbate) and must be frozen immediately and remain protected until testing. It is not always clear from the literature whether labs knew to adhere to all of these principles, in particular protecting from light. So when critically appraising the journal articles it is difficult to know whether degradation of the sample may have occurred prior to testing.

    I do hope that you take these factors into consideration when reviewing the literature.

    And just a final reminder that evidence based medicine should take account of the best available science base, but should also include the experience of the physician and the views of the patient. Although I would not presume to speak for all pyrolurics, however it would not surprise me if a considerable number were offended and annoyed by being dismissed out of hand as believing in “quackery”.
    http://www.hputest.nl/literatuur.htm

    • Dear Catriona,
      Thank you for leaving a comment. I know I’m often cast into the same mold as “the establishment” but I am also a seeker of truth when it comes to health and well-being.

      I do not doubt that people are suffering from something, but I think given the variety of symptoms supposedly linked to pyroluria, the illness could virtually be anything. I don’t understand why many promoters of pyroluria don’t seem to consider this.

      In reviewing the link you provided, I note the following:
      1) The vast majority of the listed citations mention pyrroles in the title but do not give me the impression they support the existence of pyroluria.
      2) Many of the articles are outdated with the most recent one appearing to be from 2004. I didn’t notice anything more recent.
      3) A number of the articles were written the the guy who supposedly discovered pyroluria as discussed in my article.
      4) I am curious to know if you’ve tracked down each and every article and read them to the letter to see if they supported the pyroluria theory. The onus is on the promoters to clearly show that their articles support their thesis, not the other way around.

      I think that because pyroluria is such a hot topic these days, it would be beneficial to see brand new studies which test the difficult research questions. If there can be a definitive link found between pyroluria and all the listed symptoms (disparate as they all are), and a treatment mechanism which shows it’s more effective than placebo, this would be a good step forward.

      But for as much as many people try to will pyroluria into existence, to date, there is still no substantial independent body of research to support it. I would love to keep this debate going and provide this research if and when it becomes available.

      Kind regards,
      Bill

    • Thank you for the link Catriona, Again, the page you reference just talks about the test for the existence of pyroluria but does not appear to offer any evidence that they are the root of the multitude of listed symptoms. It’s also noteworthy that Brett the chemist works with Bill Walsh’s Bio-Balance which has a vested interest in pyroluria as an illness.

      To be clear and fair, I am not grabbing for anything just to support my point. I’d love to be wrong about pyroluria and see a body of evidence emerge to support it.

      Kind regards
      Bill

      • Dr Bill, as someone trained in nutrition I would hope that you might open your mind a bit more around Pyroluria. It is true, as you say, that subsequent research did not find consistent kryptopyrrolles in people suffering schizophrenia. This doesn’t mean though that chronic low levels of B6 and zinc (and often magnesium) are related to (if not causative of) the many symptoms that you find on websites associated with pyroluria.

        One effect of chronically low zinc is intestinal dysbiosis with subsequent allergies, auto-immune dx and brain imbalances (see new research regarding link between gut biome and mental health issues). Not to mention high levels of copper to the point of copper toxicity. In fact, zinc and b6 are two of the most widely utilised and needed nutrients for the bodies functioning.

        I don’t know how pyrolles fit into this equation – maybe it is an overproduction of pyrolles by the liver that does rob the body of B6 and zinc and causes a chronic shortage. It needs to be studied more what this relationship really is.

        I have suffered chronic illness for over twenty years, and as I got older increasing anxiety, some moderate depression and a lot of inner tension (typical I believe of someone with pyroluria). I had been diagnosed with moderate pyroluria, but really didn’t take it seriously or take the supplements for some years. My anxiety and tension (and numerous other symptoms) just got worse over time. At last, I remembered about the pyroluria and started on an active form of B6 and zinc picolinate. Within 6 days I experienced the ability to relax which I really hadn’t had for years. Then deep sleep came, and over the next year a sense of resilience, lessening food allergies, virtually no anxiety, rarely feeling depressed and improving digestion (I had had chronic low stomach acid – from low zinc).

        My blood tests had previously shown low zinc, even when supplementing with 15mg of zinc per day – (there isn’t an effective blood test for B6 is my understanding). When I increased my zinc intake to at least 30 mg per day I then had the improvements.

        My experience is not isolated. Online groups of people with pyroluria repeat these remarkable improvements in health by simple accurate supplementing. There is something real here and by trying to discredit the existence of this disorder by looking at very limited research around schizophrenia it does a great disservice to the furthering of our understanding about biochemical and nutritional medicine.

        I do hope you will keep an open mind.

        • Hi Kate,
          Thank you for your comment and for keeping your tone civil. To be clear, as I’ve said multiple times in response to comments, I do believe the symptoms that people describe are absolutely unequivocally real to them. Whether or not those symptoms are due to something called pyroluria or otherwise is yet to be determined. Whilst it seems intuitively obvious to some people that it exists, whether from symptoms or a perceived improvement in the condition from taking supplements, this only warrants the justification for properly controlled clinical trials.

          You state that I am trying to discredit the existence of pyroluria by looking at very limited research around schizophrenia. Could you please provide more recent published research that you think does support it? I’d be happy to amend the article if it exists.

          I am familiar with a list of publications from Walsh’s website, but whilst it occupies space and looks impressive, there are only two listings for pyroluria which is a 2008 two-part review article (not original research) on mauve factor published in an alternative therapies journal (see: http://www.walshinstitute.org/researchstudies.html).

          Once there, click on the first article (http://www.walshinstitute.org/uploads/1/7/9/9/17997321/discerning-mauve-factor-part-1-galley-feb-2008.pdf) and have a good look at the references. Walsh and colleagues list 163 references. Admittedly, that is an impressive number of references for an article that is only 8 pages long. When I spent the time going through each of the references, I noticed a pattern.

          First, though the article was written in 2008, most of the references are well over 30+ years old, with some dating back to the early 1960s.

          Second, they spend a lot of time referencing their own work rather than other independent research which either corroborates or refutes their findings.

          Third, a lot of the references are related to schizophrenia and not specifically anxiety and depression (as is the case with most of the people leaving comments here). Neither of the articles make a compelling case for the pyroluria as a clinical entity and its relationship to anxiety and depression.

          Fourth, a number of the references have no direct relevance to pyroluria or its relationship to anxiety and depression.

          A number of comments have claimed that Walsh has mountains of evidence in the form of case studies. Sounds great to me, but that is also only one time point. Do we have any long-term follow up on these people one year, two years, five years, or 10 years after to see how they’re getting on? I don’t think anyone has this information (to the best of my knowledge.

          In short, the bottom line as of this writing is that Walsh himself is still referencing outdated journal articles and applying them to the modern term “pyroluria.” The onus is still on its promoters (Walsh and colleagues) to prove that pyroluria is a real clinical entity and that their proposed treatments are effective.

          I’ll close with a quote from Carl Sagan which I thought was quite relevant to the pyroluria debate:

          “Scientists are intent on testing theories to the breaking point. They do not trust what is intuitively obvious.

          That the Earth is flat was once obvious. That heavy bodies fall faster than light ones was once obvious. That bloodsucking leeches cure most diseases was once obvious.

          That some people are naturally and by divine decree slaves was once obvious. That there is such a place as the centre of the Universe, and that the Earth sits in that exalted spot was once obvious. That there is an absolute standard of rest was once obvious.

          The truth may be puzzling or counterintuitive. It may contradict deeply held beliefs. Experiment is how we get a handle on it.”
          ~ Carl Sagan

  16. You can’t imagine how frustrating it is that RCT a aren’t organised on this. There are some case series, lots of studies looking at biochemical abnormalities, and there are small numbers of studies still being published.
    Here is something recent. More of an audit, however it does note that young folks with ADHD have quite deranged biochemistry which appears to be correctable with nutrient therapy. Unfortunately they did not compare symptomatology before and after treatment.
    https://www.csom.ca/wp-content/uploads/2013/09/The-Orthomolecular-Correction-of-Metabolic-Imbalances-Found-in-Attention-Defecit-Hyperactivity-Disorder-A-Retrospective-Analysis-in-an-Outpatient-Clinic-28.3.pdf

    • Dear Catriona,
      Thank you for your comment. I find it frustrating too because I’d really like to see more independent evidence around pyroluria, be it positive, negative, or indifferent. At least then we’d have a bit more to go on. The article you reference appears in the Journal of Orthomolecular Medicine which has been shunned by Medline and other standard scientific outlets for promoting pseudoscience. So if we could see more independent research on pyroluria from a variety of investigators appearing in “accepted” medical journals, then I think that would be a step forward for substantiating pyroluria’s existence.

      I think what I still have a hard time grasping is how pyroluria proponents cite a massive list of symptoms which are so vague that they could apply to anything. This presents problems from a research perspective because you would need to have established and quantifiable clinical endpoints to compare from pre to post intervention. When you talk about vague symptoms like “fatigue,” “cloudy thinking,” or “poor memory,” how do you get an accurate gauge on this? Ultimately you’re still using subjective scales to make this determination.

      The other consideration is that people may present to a pyroluria promoter with very real symptoms, and yes, I do believe sufferers are suffering from something, but if it’s not pyroluria and it’s something more sinister like cancer, then the patient may forego urgent tests which might spot the cancer and allow for prompt life-saving treatment.

      In closing, if pyroluria is real, I think we’d need to see more objective evidence to substantiate it and not just a bunch of information being pushed solely by Bio-Balance and the Journal of Orthomolecular Medicine. I do acknowledge that the medical community does not have all the answers, but I don’t think it’s as simple as slapping a pyroluria label on every vague symptom either.

      Kind regards
      Bill

      • Hi Bill,

        Agree with you 100%. There appears to be a very significant gap in the biochemical process that is attributed to pyoluria.

        Somehow, the ability of a particular pyrrole (according to the previously discussed representative of Behaveability in Sydney) – is that pyrroles binds tightly to B6 and Zinc.

        She could not explain the connection between supplementing with zinc and how zinc would manage this condition and alleviate the symptoms of pyoluria instead of simply being zinc deficiency symptoms.

        But it appears that having high levels of a type of pyrrole in your urine has not been attributed to any symptoms (let alone clinical disease?)

        At least I can’t find anything concrete or any significant that hypothesises this directly.

        An abstract from the journal of Inorganic Chemistry Communications; JH Choi et al….
        http://www.sciencedirect.com/science/article/pii/S138770031400433X

        “A chemosensor for selective detection of zinc has been prepared by the simple one-step reaction of pyrrole-2-carboxaldehyde and amino indanol. Whereas other metal ions except Zn2 + have no effect on the fluorescence of it, Zn2 + enhanced the fluorescence at 400 nm by the complexation of the sensor molecule and Zn2 + ion. The chemosensor has high selectivity and sensitivity toward Zn2 + ion with high binding constant (3 × 106 M− 1) and low detection limit (1.0 × 10− 6 mol/L). 1H NMR spectroscopy and Job’s plot suggest that they formed 1:1 complex.”

        There is also mention of Zinc related diseases in this article but no mention of Pyroluria as a disease related to Zinc;

        hosale, J., Fegade, U., Bondhopadhyay, B., Kaur, S., Singh, N., Basu, A., & … Kuwar, A. (2015). Pyrrole-coupled salicylimine-based fluorescence “turn on” probe for highly selective recognition of Zn(2+) ions in mixed aqueous media: Application in living cell imaging. Journal Of Molecular Recognition: JMR, 28(6), 369-375. doi:10.1002/jmr.2451

        “Cation sensing behaviour of a pyrrole-based derivative (2-hydroxyl 3 methyl 6 isopropyl benzaldehyde}-3,4-dimethyl-1H-pyrrole-2-carbohydrazide (receptor 3) has been explored and is found to be selective towards Zn(2+) over a variety of tested cations. The receptor 3 has shown high selectivity and sensitivity towards Zn(2+) over the other alkali, alkaline earth and transition metal ions. In the presence of Zn(2+) , absorption band of receptor 3 has shown the red shift. The sensing behaviour has been suggested to continue via enhancement process which has further been supported by UV-vis absorption and theoretical density functional theory (DFT) calculations indicating the formation of a 1:1 complex between the pyrrole based receptor 3 and Zn(2+) . The present work is presenting a highly selective dual channel colorimetric sensor for zinc with great sensitivity. The developed sensor was successfully applied to image intracellular Zn(2+) in living cells.” Copyright © 2015 John Wiley & Sons, Ltd.

        Daniel, W. E., & Stockbridge, H. L. (1997). Environmental chemical exposures and disturbances of heme synthesis. Environmental Health Perspectives Supplements, 10537.

        “Heme, or iron-protoporphyrin IX, is produced by a metabolic pathway that involves eight enzyme-controlled steps (see below and Figure 1).

        Succinyl CoA and glycine are combined to form delta-aminolevulinic acid (ALA), an amino acid committed exclusively to heme synthesis.

        Two ALA molecules are condensed to form porphobilinogen (PBG), a mono-pyrrole.

        Four PBG molecules are polymerized to form the linear tetrapyrrole hydroxy-methylbilane.
        Hydroxymethylbilane is converted enzymatically to the cyclic tetrapyrrole uroporphyrinogen III (or nonenzymatically to an isomer, uroporphyrinogen I, which does not act as an intermediate in heme synthesis).

        Sequential decarboxylations produce a series of 7-, 6-, and 5-carboxyl prophyrinogens and then coproporphyrinogen III.

        Further sequential decarboxylations produce 3-carboxyl porphyrinogen and then protoporphyrinogen IX. Protoporphyrinogen IX undergoes oxidation to protoporphyrin IX.

        Protoporphyrin IX is chelated with ferrous iron to produce heme.

        Heme and protoporphyrin IX are the only directly formed intermediates in the heme synthesis pathway that are actual porphyrins rather than porphyrinogens. However, porphyrinogens are readily oxidized to the respective porphyrin forms, particularly when removed from the body. Most laboratory assays measure and reportporphyrinogens in porphyrin form. For the convenience of a summary term, we use the term heme precursors loosely to include measured porphyrin forms of porphyrinogens as well as the true intermediates of heme synthesis.”

        Where does this mystery pyrrole come from? (Hydroxyhemepyrrolin 2 – 1) Not all pyrrole molecules bind to Zinc and B6.

        “Pyrrole molecules bind to zinc and B6 and are removed from the body as waste” written in her handout at the talk…. and “Someone who has this disorder makes too many pyrrole molecules in their spleen.”

        I was under the impression the spleens function was to filter dead red blood cells and didn’t make the heme pyrroles from the spleen? Have I missed something in basic physiology?

        That’s why when you take a bit of EPO (Mr Lance!) your spleen might become a “little sore”!

        The articles listed are for you to assist in your quest and for me to express my frustration at professionals such as the one who gave the talk to us a couple of weeks ago – who are spending more time talking about this (and to the wrong audience) than the importance of really good nutrition and the way to achieve it; by reading labels and understanding what’s in the processed food you are buying at the supermarket.

        Because inevitably if you need to buy processed buy the best processed you can. No examples of tricks to read the nutrition panel, ingredients etc…. I was so angry…. I consider myself an expert in this area and I was really hoping this so called nutritionist would provide the audience with the tools to do so and was also hoping to find out more advanced information – but I learnt absolutely nothing!

        Also understanding that all plant based foods are great and that there is no one food that will fix any ailments you have. People now want silver bullet solutions for everything.

        There isn’t one; and that is the problem. Unfortunately, we need to be realistic, logical and reasonable about what we eat, NOT listen to the vast array of (reputable/accepted) studies out there and use them to justify our argument basis. Because where there’s one supporting; there’s one disputing. Besides, most people glean only what they want from the study instead of reading in its entirety and therefore, miss crucial points.

        But simply, my philosophy (for my daughter) is; eat plants, fresh animal products (and a bit of junk if you really need it) mix it up as much as you can.

        But remembering too much of anything – including plant-based foods can be a detriment.

        I really love and support what Jamie Oliver is preaching and he is on the mark. He is realistic and preaching to the right audience.

        “Just buy the least processed food most of the time and most processed food least of the time”.

        I don’t know if I have coined this phrase or not; I haven’t looked! But, if I have – great! I give you permission to use it!!

      • I have been tested positive to pyroluria last year, and unfortunately over the last 10years or so I have been unwell with immunity issues with last year having breast cancer, this year finding out my digestive system is so imbalanced with 98% streptococcal when a healthy person is suppose to have 5%. I feel that if my pyroluria was picked up earlier my body wouldn’t be so challenged and had a welcome mat for cancer.
        I know its important to have good gut health which I’ve said all along but all the Dr’s I’ve been to just said I was depressed and wanted to give drugs when I should’ve had bioscreen test done way back then. From my debarkle I can honestly say what on earth do they teach at medical school……. I now have 4 counts of misdiagnosis with no depression what the!!Something needs to change in the health system.10% of the population have pyrole disorder which left untreated like me leads to an ugly path. This needs be in mainstream medicine instead of going to the ends of the earth to find someone. By the way I was a health freak don’t drink never smoked used to teach 3 aerobics classes a day 16% body fat. I think I know my body.

  17. I’m a clinical nutrition student in the Washington, DC area. I must admit the whole Pyroluria condition sounds like some made up woo woo stuff. Nevertheless, I was quite intrigued after reading all about this strange condition. I have always had some sort of low-level anxiety and fear of public speaking (unusually intense) among other strange issues similar to some of the signs and symptoms listed on some pyroluria websites. Anyway, I had some B6 (P5P) and Zinc supplements laying around. I decided to up the dosage and I immediately felt relief. That low-level anxiety that I have lived with since I can remember was gone. Now was this just the power of the mind at work? I don’t know, don’t really care. Bottom line, I felt and still feel a hell of a lot better. I feel like there could be something to this pyroluria thing, at least enough to warrant further research. It will be interesting to see how things pan out over the years with pyroluria.

    • Thanks for your comment. I agree, there might be something there, but until we start seeing some sort of independent evidence base, then we’re all just pissing into the wind with pyroluria (pun intended). Will be interesting to watch this space!

  18. Thanks for your article Bill. You pretty much arrived at the same conclusion that I did while reading the literature on this ‘condition’.

    I’ve seen anecdotes go both ways too .. some get good effects with the treatment (zinc, B6 and other nutrients), whereas others don’t get much or any effect (even after 12+ months of treatment). The ones who respond, maybe they just had a good old zinc deficiency? Correlation, not causation: the phrase that goes with pyroluria, well and truly.

    Also, no evidence of pyrroles actually complexed with zinc and/or B6 in vivo. Until that research is done, I’m leaving it in the unproven fringe science category.

    The signs and symptoms are real, I don’t discount those, it’s just it doesn’t seem like ‘pyroluria’ is actually the cause. You also mention it several times here that the signs and symptoms are real, but they’re so vague that the cause could be anything. You know what would be hilarious? A differential diagnosis list for pyroluria 😉 It’d be longer than this comment thread.

    Like you, I’ll keep observing. But the evidence really isn’t convincing.

    • Hi Jason,
      Thank you for leaving a comment. I know many of those who are adamant that pyroluria is a real condition are also dealing with very real signs and symptoms. Nobody is denying them that. Heck, I’ve had some pretty heavy stress in my life and found myself with some of the same pyroluria symptoms listed, but does that mean I have the condition? Not necessarily. Remove the stressors and get help for mental/emotional problems and the pyroluria symptoms will likely disappear just the same. Cheers, Bill

  19. Dear Doctor Sukala,

    Perhaps Pyroluria exists, perhaps not. People on both sides of the fence are going to argue about this until its existence is proven. (Being realistic, they will continue to argue even if it disproven.)

    But why I am curious, other than the attention it gets you on your site, why even bring it up? Just because you don’t believe in it doesn’t automatically negate someone else believing it. And even if it is a sugar pill, the power of the mind to heal is a strong force. Your attempt to put your mark out there and discredit this potential disease plants a seed of doubt in people just trying to find out more about it. If this is for real, then they are treating it, if it is not, then they are treating some sort of other ailment that they have given a name to, and maybe mentally are successful.

    In my opinion, this feels like an ego trip for you. Why push buttons?

    • Hi John,
      I’m hopeful that you’ve taken the time to read my article in its entirety. People are free to believe what they want to believe. My article is not going to sway someone’s opinion that has already convinced themselves otherwise.

      The fact of the matter is that, as of this writing, there is no substantial body of evidence to support that pyroluria is a real disorder. If you did read my article from top to bottom, surely you are reasonable enough to acknowledge that the symptoms are extremely vague and ambiguous and could apply to virtually anything.

      I do believe people with symptoms may have high pyrrole levels, but that alone does not establish a cause and effect relationship between the two.

      Whilst not conclusive, there is evidence that some B vitamins and zinc are associated with depression and anxiety and that supplementation may even help this. However, this still does not confirm the existence of pyroluria as a disorder or establish its link with depression and anxiety.

      I would love to see a body of evidence that supports the existence of pyroluria. But considering it’s been nearly 40 years since the original theory was shown to be unsound and we still have yet to see new evidence, perhaps we should be looking in other directions. If and when that evidence does emerge, I’ll be more than happy to amend this article to reflect this.

      As for your comment about just trying to get attention or indulge myself in an ego trip, you don’t know me personally or professionally. I could state my own personal assumptions about you, but that is unkind and inappropriate. If you choose to leave comments on my blog, please stick to the issues at hand and leave personal attacks out of the discussion.

      Kind regards

  20. A very poorly researched article, I’m sorry to say. Pyrolle disorder is actually a lab-identified disorder (in Australia, it’s Clinpath that does the testing), and not some hippie concept. Keep in mind depression and other mental health disorders were also thought of as false diagnoses until the last couple of decades. If you are a true scientific researcher, you don’t close the book on anything.
    My daughter has pyrometers disorder and I can tell you there is no other reason for her symptoms.
    If anyone wants to hear from one of the leading experts in the field, Google ” Dr Bill Walsh”.

    • Dear Liz,
      Thank you for your comment. You are entitled to your opinion. If you read my article in its entirety, you will note that I do not refute that pyrroles exist. Even with a lab test that can identify pyrroles, this does not confirm that pyroluria as a disorder is real.

      Please read my comment below to John. I do not doubt that symptoms exist, but whether or not they’re due to pyroluria is a different question. Even if B6 and zinc supplements help ameliorate depression and anxiety, does this confirm the existence of pyroluria? Or could it coincidence? If it’s the placebo effect, does that confirm that pyroluria is real? In your daughter’s case, I don’t discount that she has symptoms, but as I state above, does this confirm the existence of pyroluria? The original research from ~40 years ago wasn’t able to hold water and since that time, no other research has substantiated its existence.

  21. My psychologist recommended nutrient therapy to me. After years of horrible antidepressants of which several made me suidical when coming off them, this is the best thing I have ever done for my health. I have tertiary standard science and chemistry understanding, so I get why many wouldn’t believe it’s real. I was that person. However, Hoffer was onto something. There are some trials in the works, but it’s extremely hard to produce peer reviewed studies when scientists were almost murdered recently when looking how ketamine (old unpatented cheap drug) worked on receptors in the brain. Not surprising no one is keen to prove that vitamin therapy could work. It’s also more than just taking a few vitamins too, it’s an holistic approach to healthcare. I was a skeptic- this has changed my life. Please read Dr Walsh’s book Nutrient Power. His work was on a lot more that Pyroluria and it helps to give context to how nutrient therapy has worked for so many people. I live in hope that this becomes accepted mainstream medicine.

    • Hi Stacey,
      Thank you for your comment. I can appreciate your plight as I too have personally walked some pretty dark metaphorical alleys in my life. Please see my comments to Liz and John regarding pyroluria research. I appreciate there is a very strong emotional charge to this topic, but I am merely trying to point out the following:
      1) Yes, pyrroles exist and a test can detect them, but this does not mean that pyroluria is a real disorder.
      2) There is no conclusive evidence that pyroluria exists even after 40 years since the original hypothesis.
      3) Yes people do have symptoms of something, but this does not confirm the existence of pyroluria. The listed symptoms are quite vague.
      4) If taking B vitamins and zinc improves symptoms, this does not confirm the existence of pyroluria as a disorder. In all fairness, I acknowledge it could be correcting something or it could possibly be a placebo effect.
      5) If supplements are taken in conjunction with psychological counselling, improvements in diet, exercise, social connectedness, then improvements in symptoms of depression and anxiety might improve due to the latter and not the former. THIS is why we need to see good quality research.

      If and when this research emerges, be it favourable or otherwise, I am happy to publish those findings here. I have no kindling love affair with trying to be right in this debate. I’m merely stating the facts as they exist at this point in time. See points 1-5 above.

      Thanks again for taking the time to leave a comment.

      Kind regards
      Bill

  22. Given you aren’t a medical doctor, it’s not surprising your skepticism at PD (pyrroles disorder.) I have tried everything, including meds, healthy living, psychiatrists, psychologists, accepting my life and symptoms. Nutrient therapy has changed my life. I have high pyrroles, low zinc, high free copper and complications from these things. (Have a look a what high copper does to the body.) The reason the symptom list is so varied is that your own biochemistry will mean these nutrient imbalances affects every genotype in a different way. You should never diagnose solely from a symptom list and not everyone will have all those symptoms- only a few! I have low cortisol, high RT3 and responded well ( apart from horrific side affects) to SNRI drugs, so low seretonin. All these things are related to low B6 and zinc! I am responding well to this therapy and have been able to hold a job and think clearly for the first time in a long time. I also have mutations on the MFTHR gene which many sufferers also have. It’s another part of the picture. I’m so thankful I’ve found doctors that look at all my physical and mental symptoms and have found a plausible cause, rather than just handing me yet another script for prescription drugs to mask a symptom. There definitely needs to be more research, but for me, proof is in my improvement. I completely understand your point of view as I know the science is hazy, but thousands of people are really benefiting from nutrient therapy. We need to get this into mainstream medicine. If I had the money I would fund research.

    • Hi Debbie,
      Please see my comments to Stacey, Liz, and John so I don’t have to keep repeating myself.

      Whether I’m a medical doctor or not is irrelevant. In fact, most of my medical doctor friends and colleagues are more critical than I am and also acknowledge that pyroluria, as of this writing, does not have a strong evidence base.

      I think the main point I’ll make here is that whether nutrient therapy works for real or as a placebo, either way, this does not confirm the existence of pyroluria. In any event, I am genuinely happy you are feeling better. Kind regards

  23. Hi Bill,

    Yes, I have taken the time to read your article. There is no judgment or attack on you. Rather, still the question of why? Why do you seem to care so much on proving this as a non-disorder? And if it isn’t a money thing, if indeed these tests are so inexpensive to prove or disprove; AND since you seem to have a Doctorate and therefore, could be considered qualified to do such a study; I guess another question plaguing me would be: Why not prove it does not exist? Why I say this is an ego trip for you is that there is truly not enough conclusive data to back either position to a point where it has left enough of a reason for those to still believe this is a real thing. And it could in fact be, or it might not be, or it might be that there exists more to this than what we know, and there exists a missing piece that ties all that is currently known, and the treatment Zinc and B6 being the primary nutrients (Vitamin and Mineral) that help to reverse this. 1500 years ago, everybody knew the Earth was the center of the Universe, 500 years ago, everybody knew the Earth was flat.

    In the end, it still seems to me that faith or the power of belief, is just as important, if not even more. I believe in God, there is no scientific proof as far as I know, but that does not stop me from believing. Why is it that until science proves something, it is instantly invalidated? And why is it that once science proves something, it is? And regardless, it would seem that a person nowadays can prove anything with enough money and creative statistical analysis.

    And to bring up a point, this is not a myth, as there is a natural explanation, there exists truth, even if all components are not seen as true. You have incorrectly used the term, and it is misleading. Theory would be the correct term to use.

    In the end, and my original question still left unanswered: Why do you feel the need to even bring this up? What is your end game? To say there is not enough scientific evidence, yet, to prove (accept) this? And if there was tomorrow, we would get an apology? What about those people who read this article, and based their decision on your writings and decided not to pursue a treatment because the theory wasn’t proven? I wouldn’t want that on my head.

    Kind regards,

    John

    • Hi John,
      I would also suggest you take extra time to read my responses to other comments. These may answer some of your questions. Otherwise, we may have to just agree to disagree.

      As for why I wrote the article, truth be known, I had no intention of writing anything on pyroluria. But I received a number of requests about whether or not there was any objective peer-reviewed research to support the theory so decided to do a bit of digging. I didn’t set off with any pre-determined agenda to debunk pyroluria. I simply reported what was out there.

      Quite the contrary, if there was a body of independent evidence for it, then the article would have read differently. If you’d taken the time to read my responses to other readers, you’d have come across the one where I say something to the effect that if and when new evidence presents itself, I’ll be happy to add that to this article.

      I was struck by the following quote by Steven Novella:

      What do you think science is? There is nothing magical about science. It is simply a systematic way for carefully and thoroughly observing nature and using consistent logic to evaluate results.

      Which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic? –Dr Steven Novella

    • Actually John, pyroluria is a construct of science. It is supposed to be a simple biochemical phenomena that results in functional deficiencies of zinc and B6, except the proposed major mechanism hasn’t been demonstrated in vivo as far as we can tell. Science is about demonstrating cause and effect.

      Why should I, or Bill for that matter, bring this up? Because we have questions about validity. To borrow one of your arguments, if no one questioned the earth being the centre of the universe, would we ever know different?

      I’m a health practitioner, so I’m in the business of examining cause and effect in healthcare. A large part of the profession is to critically evaluate evidence in the search of cause and effect. When I first came across pyroluria, I thought “Hey I’ve never heard of that before, and wow look at that symptom picture, have I missed something here?” .. so I started reading the literature. I came to the conclusion that it was an inconclusive rabbit hole, and the evidence did not stack up. Correlation, not causation. The burden of proof is on those asserting the claim.

      • Thanks for your comment Jason. Your last line sums it up. The burden of proof is on those making the claims, not on everyone else to chase their tails trying to validate or refute every theory that comes along.

    • Hi John,

      You said it yourself; “with enough money and a creative statistical analysis” you can prove anything. Well, that is why the scientific community accepts legitimate studies that are undertaken with no funding by interested commercial parties, so the “proof” is not tarnished with commercial or political self – interest. What the community wants is a study that is not published by the predatory publishers and one that fills in all physiological gaps in this condition. There are many, many significant gaps.

      Another good analogy is the cosmetic, tobacco industry, the sugar industry both have provided studies with outcomes they wanted and because they funded such studies, (even though they were at arms length), they were trying to use these studies to prove their product/s were not harmful to our health and in the case of cosmetics – a wonder cream (roughly one a week I reckon!) It took a long time to prove such commercial interest was marring the outcome of the studies.

      Scientists are very careful to disclose the information in the study that they have a conflict of interest and the consequence of doing so; generally means the studies (though published) are not really accepted as widely as one with no such interest.

      That’s why the commercial bodies who publish and undertake the studies are called “predatory publishers”and the organisation/s involved with all such studies trying to prove this condition is the only source of information at the public’s disposal and they are listed as “predatory publishers”.

      So the ill informed public (and not by choice) have no choice but to accept the pyrrole condition and unfortunately; at the expense of any other condition that might be present. Such is my disappointment for my child – who has other conditions that are differential (possible alternative) diagnoses of the pylorria condition. Keeping in mind the “nutritionist” that is sprouting this stuff is providing a silver bullet solution to all our childrens’ behavioural woes and I can say there is no such thing. That is what is making my blood boil….

      I would have much preferred an hour talk on reading the labels in the supermarket. So when we do buy our “processed” foods, we buy the best we can buy. By processed I mean the least processed food I can buy short of fruit and veges and fresh meats. That is why I attended the talk in the first place, in the hope of gleaning some really good information on vitamins and mineral content of foods and not “super foods” just all foods. I did get some of that, but not enough and not the detail I wanted.

      These people who talk about pylorria are also the ones talking about food as a therapeutic and as a prophylaxis. I completely agree, food is therapeutic and prophylactic, but only to a point.

      But we need to know more about these benefits too. Nutrition, however, is not a silver bullet and this is why everyone wants to believe it has cured all their symptoms – because it is easy. So essentially, it means that people are completely well except for their pylorria – get a symptom, must be pylorria, take some more zinc and B “wow!”everything is fixed! I am so well, I need nothing else in life, I am eating what I’m being told to; taking these vitamins and minerals. Well, that is a dangerous way to be.

      But I also agree going to the doctor and being dished out pills is also dangerous. People need to realise, it’s testing, testing, testing. There are countless tests. It’s simply not possible to find and diagnose and treat everything until certain symptoms appear. That’s what good diagnoses is all about. That’s why “silver bullets” – which are generally “fad” conditions and associated treatments are dangerous. That’s why organisations who release this information in the form of studies supporting such conditions and treatments are called “predatory publishers”. They have gain in mind before the real science. They use science to bamboozle the unsuspecting public (and professionals too) who also miss the basic science of the argument – and in this case there are some basic physiological questions that are amiss in the argument of pyrroles.

      Generally, scientists just want to know how things work. They don’t have any interest in gain other than straight, clear answers and knowledge. That’s all any of us want. But some don’t know what they don’t know. So, they don’t know they’re getting a bums rush because they – don’t know!

      That’s how you miss things like bowel cancer at age 27. My cousin died of this at that age. And my husbands work colleague now aged in the thirties also diagnosed at my cousin’s age, but has survived. Imagine if they attributed symptoms to pylorria and took zinc and B and decided they were fine for a few more months?

    • I agree completely with John, this is about you and being heard rather than any altruistic effort to help people who are unwell.
      I have an honours degree in Vetrinary Science, extension work in biochemistry and immunology and a lifelong interest in Nutrition.
      I maintain and history has proven that research and human progress has come about from imagination. Observers that investigate ’cause and effect’. You seem to need the research paper before you. If you feel so strongly create this research you so badly need. You have stated a number of times that you aren’t a medical doctor so perhaps you should not profess so strongly on issues regarding people’s health based on the fact that a paper has or hasn’t been written on it.

  24. the pyrrole (Kryptopyrrole) levels are not done at Sullivan and Nicolaides nor Clinpath – they are sent to SAFE Analytical laboratories who are associated with Dr Walsh, the Walsh research institiute and Bio-balance health. It costs about $80 for the testing. SAFE analytical labs require one of their request forms from one of their approved practitioners (and because it is not a medicare rebatable test these practitioners do not necessarily have to be registered medical doctors – and presumably they are the ones who can ‘sell’ the treatment). seems it’s all pretty much kept ‘in-house’.

  25. Dr. Sukala,

    Great article. As someone whom has worked in the clinical diagnostic field, pyroluria is a fascinating and frustrating topic. Some pyroluria confusion comes from a dubious and intentional association (by the labs that test for it) with porphyria, a devastating disease.

    The most fraudulent aspect is that no lab has published baseline measurements of Kryptopyrrole in the general population. Moreover, the labs arbitrarily pick a number of >20 mcg/dl as diagnostic of a disease, assuring all patients will be scared into seeking treatment from the lab’s that perform the testing. An example is the US based Direct Healthcare Access II Laboratory (Mount Prospect, IL).

    My guess is that >90% of the general population will test >20 mcg/dl, and waste valuable time seeking treatments for a non-existent disease when they could be looking at more probable causes for their issues.

    Bill

    • Hi Bill,
      Thank you very much for leaving a comment. You make some very interesting points and confirmed something that I suspected: that a good chunk of the population would likely meet the threshold for kryptopyrroles. As I said in my article, I don’t think it’s in question that kryptopyrroles exist, but I do question whether or not their presence indicates a disease state that needs to be treated.

      One of the things I see quite often is that those who swear it exists put the onus on everyone else to prove it DOESN’T exist. That’s not fair really. Someone could walk around saying: “I’m Julius Caesar reincarnated….prove me wrong!” Point is, the burden of proof is on those making the claims, not on the rest of the world to chase their tail proving otherwise. It’s quite convenient really.

      Thanks again for your insightful comment. Most appreciated.

  26. Thank you for this balanced article! I’m wondering if you have any take on “undermethylation” also?

    I just saw a GP connected to the Walsh institute today to get my results from testing, and was “diagnosed” with Pyrrole disorder, and told I was ‘undermethylated’. I didn’t feel too confidant in it all to be honest. Lots of red flags going up for me. I was relieved to find your article. I’ll definitely be approaching this with some reserve! It’s very overwhelming navigating this area when you don’t have a med science background. 🙂

    I’m very impressed you’ve taken the time to patiently respond to all of these comments. I’m surprised at the emotion in peoples responses when your article seems very neutral and objective to me.

    Thanks!

    • Hi Emma,
      Thank you for taking the time to leave a comment. To be honest, my goal wasn’t to go out of my way to cherry pick information to debunk pyroluria. I was genuinely interested in it but before I was going to give it a stamp of approval (for those that care), I just wanted to see what evidence base there was for it. I know that for the convinced, it doesn’t matter what evidence I provide, they will resolutely believe what they want to believe.

      I’ve had a number of comments and emails telling me to do research to prove pyroluria is or is not real. But the onus to provide research is on those making the claims, not on others who simply point out the lack of existing evidence to substantiate it.

      For those that insist on trying the treatments (vitamins and minerals), I honestly am not too fussed about it provided they’ve done their diligence regarding dosage and safety and it’s not cost prohibitive. However, as I stated in my article, if a diagnosis of pyroluria is accepted in favor of an actual cancer diagnosis, then that is a very real concern. I simply suggest that people make sure to get a second opinion to rule out something more sinister before jumping on the pyroluria bandwagon.

      As for methylation, the pyroluria camp tends to discuss things in terms of under or overmethylation in reference to the methylation cycle, a biochemical pathway. If you’re an under or over methylator, then it can impact a number of bodily functions for better or worse. If you Google pyroluria methylation, you’ll probably find a few blips on it.

      Thanks again for your kind words. Keep me posted on how you go with everything and what steps you take next.

      Kind regards
      Bill

      • Bill hi,
        Thank you for open this discussion ….
        Would be great to find more evidence to prove that Pyrrole disorder exists however I personally didn’t not find anything else to share and I am new to all this …. Which is very scary because I don’t know what to believe! What I am learning for sure is that the human body is sooooo complex that WE need as much help as we can possible get. Since I can remember I have been trying different treatments with none or minimal success … Traditional medicine didn’t not help me.
        After reading all the post I really hope that I will get better by only taking B6 and zinc …. I am 46 years old, married with 2 kids and would be wonderful be happy and healthy one day … soon
        I am also think that you have “graciously” responded to people even when they seemed a little bit discontent with your desire to have some scientific research backing up Pyrrole disorder.

        • Dear Rosa,
          Thank you for your equally gracious comment. I can certainly appreciate your frustration with trying to feel better when nothing else seems to be working. Have you had your hormone levels checked? Sometimes things can go a bit wonky there when most docs wouldn’t bother checking much more than a complete blood chemistry panel. If you take B6 and zinc and it helps, then all the better. I support that. Although it would not necessarily validate pyroluria as a diagnostic entity. B6 and zinc deficiency can exist, but they’re still called B6 and zinc deficiency. As you rightfully noted, I am simply looking to see more independent research that backs up pyroluria as a diagnosis. Wishing you all the best in your treatment. Kind regards. Bill

          • Hola Dr Bill

            Yes, many test has been done over the years and on the last 9 months I went to 3/4 different doctors so I trusted that they have checked everything. The doctor trained under Dr. Walsh said that in my tests I had over 400 mcg/dl (Pyrrole disease) and even my thyroid looks nomal my T3 could be the trouble. The doctor didn’t explain much which make me think …
            Until 2 months ago I thought that I had depression and chronic fatigue so everything that I know I am learning from the internet so I DO understand when you ask people to be careful and don’t rely only in this diagnose, because maybe we are masking other big issues.
            I have gradually replaced pharmaceutical drugs for depression with diet and some exercises like walking my dogs 🙂 . Also meditation ( breathing techniques ) for anxiety and acupuncture for other physical symptoms.
            I feel better now than when I was taking the medication ( for sure I tried all types over the years ) but unfortunately for other people this would be a very dangerous thing to do.
            As you can tell now English is not my first language and I learned this saying which tells you not to put all your eggs in the same basket … and I think that applies here but also I am very hopeful that will help as it did to other people !
            I hope that people out there learn to read things over the Internet wisely … By taking some advice, by trying new approaches, by trusting the conventional medicine, by been hopeful in alternative medicine because in the end you never know what will make you feel better.
            Once again thanks for open this discussion and I will let you know how things are going.
            Regards
            Rosa

          • Muy buenas tardes Rosa. Muchísimas gracias por tu comentario. Te voy a enviar un correo para contarte unas cosas que posiblemente te puedan ayudar. Cuidate, Bill

    • Hi Emma

      Like you I just saw a GP connected to Dr. Walsh and I was diagnosed with Pyrrole disorder. I will start tonight taking B6 and zinc (compound) so I would like to know if you are also taking some supplements.
      I am overwhelmed by everything … But more scared of not getting better !
      Thanks
      Rosa

      • Hi Rosa, I am still undecided. I certainly wouldn’t mind trying some supplementation given all the anecdotal evidence out there. But I’m very skeptical. I know Omega 3’s have real evidence based results, so I’ll definitely be taking these. Let me know how you go. Best of luck!

  27. I’ve checked with NATA and the kryptopyrrole test at SAFE analytical labs ( the only lab in Australia to offer the test) is NOT an accredited ‘medical test’ it is only accredited as a chemical test. Don’t be fooled by pseudoscience.

  28. Simon Easterbrook-Smith on

    Hi Dr Sukala

    Thank you for a balanced article. A while ago a friend of mine got “diagnosed” with pyroluria so I got curious about it. I did the same as you have done (PubMed searches, etc) . It quickly became clear that it is a fictitious diagnosis. I convinced my friend of this (the fact that I have a PhD in biochemistry probably helped) and suggested that she see an Accredited Practicing Dietitian. The APD made some sensible suggestions about her diet – she is now fine.

    I joined a couple of Australian FB sites for people who allegedly have pyroluria and politely pointed out the lack of evidence for it. They did not like that – I got banned from both of them (shrugs). As far as can see pyroluria is just another fad/quack diagnosis.

    • Hi Dr Easterbrook-Smith,
      I appreciate you taking the time to leave a couple of comments on this article. I am not surprised you were banned in those fora since, much like other diets, exercises, and diagnoses with no significant or credible evidence base, it all devolves into cult-like thinking and pointless debates with people who will accept no other views than their own.

      As I’ve said on a number of occasions, to be fair, if an evidence base for pyroluria emerges in the peer-reviewed scientific literature, then I’d be happy to publish that as an addendum to this article. I think your example of your friend going to an APD is a valuable one, because for many of the “symptoms” listed for pyroluria, they are so vague and nondescript that they could apply to virtually anything. Sometimes the tried and true basics like eating better, doing exercise, quitting smoking, reducing stress, and getting adequate sleep can work miracles.

      Thanks again for taking the time to leave your thoughtful comments.
      Cheers

  29. Hi Bill,
    Thanks for this article. I am about to be tested for pyrroles by my local gp as well as some other stuff. My Doctor said I may suffer undermethylation or overmathylation (can’t remember which, it was a while ago now). Any evidence based science on this stuff? I find it all confusing to say the least…

    • Hi Julia,
      Thank you for your comment. If you find it confusing, then you’re not alone. Methylation is a real chemistry term, but its use in a pyroluria context is debatable (and appears to be useful mainly for those who subscribe to the pyroluria theory). I think before we go down the path of over or undermethylation, it would be good to see a legitimate evidence base for pyroluria first before we pull methylation into the mix. As of this writing, I am only aware of the original articles on pyrolura which did not support the theory.

    • Simon Easterbrook-Smith on

      Hi Julia,

      Adding to what Dr Sukala wrote, “undermethylation” may refer to mutations in a gene which codes for a protein called methyltetrahydrofolatereductase (MTHFR for short). MTHFR has a number of important physiological functions, which may be impaired in people who have inherited mutant forms of the gene – this may be a risk factor for some health issues. Genetic testing for these mutants is available in Australia. If you choose to get tested and it turns out that you have inherited one or more MTHFR mutations then your GP or another evidence-based health professional will be able to advise you.

      However, this evidence-based biomedical science has nothing to do with the mythical pyoluria Dx.

  30. Regarding the previous question on the occurrence of elevated pyrroles in the general population: it’s apparently about 8%.

    In Dr. Walsh’s _Nutrient Power_ book, he states that he and his colleagues have reviewed over 40,000 urinary pyrrole tests. High pyrroles are more likely to occur in situations of increased oxidative stress.

    Table 3.1 from this book lists the incidence of elevated pyrroles by illness. For example:
    ADHD = 18%
    Autism = 35%
    Depression = 24%
    Bipolar = 35%
    Alzheimer’s = 14%
    Healthy controls = 8%

    He notes, “…psychiatric symptoms often recede or disappear after B-6 and zinc therapy and normalization of pyrrole levels”.

    Whether pyrroles cause the disorder, or whether they are simply a marker for an unknown disorder, is still hazy to me– what is apparent is that pyrroles and mental stress often travel together. When the excess pyrroles are gone, people feel better.

    High pyrroles can exist even when pretreatment B6 and zinc serum levels are normal. Testing for a zinc or B6 deficiency is therefore not a replacement for the pyrrole test.

    Finally, pyroluria is not expensive to treat. A pyroluria test costs $80. If positive, then blood tests should be next. Serum B6, zinc, copper, and ceruplasmin tests are less than $200 from Life Extension or other online labs. The actual supplements are very cheap at Amazon and iHerb– 100 B6 tablets are $4, 120 Zinc Picolinate capsules are $8. EPO, multimineral, and activated-B-complex supplements are helpful optional additions, and again, they are available online for less.

    Many people skip the blood tests, but I think this is unwise, as high B6 levels can lead to neuropathy. This was discussed on the pyroluria facebook group recently.

  31. Simon Easterbrook-Smith on

    Hi Judi
    From what you have written Dr Walsh has made a lot of very specific (lots of numbers) claims in his book. But (and it is a big but) none of them have been reported in the peer-reviewed biomedical literature for scrutiny by health professionals. A PubMed search (all combinations of “Walsh”, “pyrrole” and “pyroluria”) shows nothing. When and if Dr Walsh publishes his work in the peer-reviewed literature I will look at the data and make up my own mind about them. Until he does that I will put his book into my “just another evidence-free comp/alt med book” basket.

    • Hi Judi,
      I second Simon’s response to you. I could write a book making whatever health claims I want, but if there’s no evidence base for this, then it’s just my word against the world. I could trick people into eating a low calorie diet and, when they begin to lose weight, I could claim it’s because of some mystical ratio of carb, protein, and fat, plus some diet pill. My critics would try to slam me for having no evidence, but then I’d just say “hey, look at all these satisfied customers who’ve bought my diet book.” Emotion tends to trump reason when it comes to health topics. And unfortunately, this is one of the main tactics used by people promoting their own theories. There is an evidence base for pyroluria, but unfortunately it is not a supportive one. I think it’s also important to note that the onus is on those promoting pyroluria to provide peer-reviewed evidence rather than demand its detractors produce it.

  32. Hi Simon,

    I’m not completely sure what is in Walsh’s book, as my notes came from the free Google preview feature.

    I’d include a link for anyone who might be curious, but this comment section doesn’t permit cutting and pasting… of course, anyone could just go to books.google.com like I did, search on “Nutrient Power”, and then search in the book for pyrroles. Wait, I can probably do a tiny url… here: http://tinyurl.com/py5ypfp

    I have ordered the book and plan to read it.

  33. Thank you for this article. I was diagnosed with pyrrole last year. Since then two other women I’ve met randomly that see my same Dr have been diagnosed with pyrrole, the Dr is also testing my daughter for pyrrole.

    Sometimes I genuinely feel like this is a bogus condition, I’ve spent so much money on supplements and though I think they’ve helped, I’m not sure whether it’s the supplements or the low dose of lexapro I had to finally take to get some relief from my constant palpitations, or the fact my body is naturally replenishing itself after two children born close together and extended breastfeeding.

    The fact my Dr has told me I’ll have be on all these expensive supplements forever and that even if I change my diet it won’t help because I need these high doses of these nutrients for my “condition” is somewhat disconcerting.

    I’ve also been reading quite a bit lately on how synthetic vitamins aren’t absorbed well by the body. So are these vitamins even helping? My zinc has only gone up marginally after 6 months of taking high doses.

    • Hi Sarah,
      You raise some interesting points in your comment. Yes, the supplements can be expensive and pyroloria proponents do recommend you stay on them the rest of your life. Your question as to whether or not the vitamins are helping is really one of perspective. You’ve clearly used your critical thinking and have questioned whether the Lexapro could have had a hand in helping you feel better. In this case, it will clearly be difficult to discern whether or not it was the medication or the vitamin supplements. The only thing I’m pointing out in my article is simply that there is no significant body of published evidence that pyroluria exists or that it’s the source of depression (or all the other maladies associated with it). If depression and anxiety are the issues, it might be worth having a GP do a complete check of your hormone levels and see if anything is out of place. That could also explain mood disorders using a bit more finite markers. Thanks again for your comment and best wishes. Bill

      • Simon Easterbrook-Smith on

        Hi Norman

        I am sorry to read that your son is in poor health.. But, as a fellow scientist, I suggest that you check out PubMed about this – you will find that (apart from comp/alt med folk) pyroluria is a fictitious Dx.

        I note that you also wrote that “treatment of cancer with radiowaves” can be helpful. Again, as a fellow-scientist, I suggest that you check out PubMed about this. There is not a scrap of evidence that radiofrequency radiation is of the slightest benefit to people with cancer. Of course, evidence-free comp/alt med people will disagree.

        • I find it interesting that pyroluria was deemed a disorder by Americans yet when you look at the analytics for this article over the past month, you can see that Australia has well over four times the page visits compared to the United States. Australia has a population of 23.6 million people and the US has a population of 325 million. So even with over 10 times the population of Australia, there is comparatively little interest in pyroluria outside of Australia. In fact, most people leaving comments are posting from Australian IP addresses. In the UK and Canada, pyroluria has been virtually eradicated to the extent that nobody is looking for information on this disorder. Or pyroluria’s main promoters have not yet launched an awareness campaign in any other country besides Australia.

          • Actually, that would be because you’re based in Australia. The way Google works is it shows people what it assumes people want to see. Your website is from an Australian IP, so your article would rank higher in countries nearby than in those far away due to relevancy scores. The lower in rankings your article is, the fewer people in certain countries find it. Hence your page stats have nothing to do with how many people from different locales are researching a particular topic. To get a clear picture of search volumes per location you’d need to study search data from the different search engines ( Google etc). Sheesh, for someone slamming a disorder for lack of credible research your leap on search volumes based on your own limited data is astounding, no?

          • Casper, I appreciate the point you’re trying to make and you are correct regarding IP addresses and search results. However, the IP address of this site is in the United States and despite an Australian top level domain, this article still ranks high organically in the US, Canada, UK, and India when searched in Google with a No Country Redirect. Given this, I do believe the distribution is accurate. Moreover, I acknowledge that Google Analytics is not scientific research. I was merely pointing out that it was interesting that there are 4x the number of people searching for pyroluria in Australia compared to the US despite the yanks having over 13x the population and it being the Walsh’s pyroluria home base.

    • Norman Kilpatrick on

      For pyroluria, you need the coenzyme vitamins, particularly B6.

      The kryptopyroles deplete B6 and zinc. B6 is needed for the conversion of glutamate to GABA. Glutamate is an excitatory neurotransmitter, GABA is calming. I’m wondering if the excitatory glutamate is responsible for your palpitations. My son has heart issues as well and he was diagnosed with pyroluria. He is on 300mg+ of the coenzymed B6 a day. His seizures have decreased by about 90% and his behaviour has improved massively. A doctor forced him to remain on epilepsy medication which he was sensitive to and now he is super sensitive to most medication including vitamins and some amino acids. This is definitely a metabolic disorder and I don’t have to wonder if its real or not because I’ve been living with it in my son for two years.

      Its real and it exists. The seizures are not epileptic. Anti epileptic drugs are ineffective because the seizures are due to a B6 deficience and excessive amounts of glutamate which eventually short circuits out the brain. AED’s do not help. It is not a question of the normal approaches to epilepsy and drug therapy.

      I understand some people who have mild pyroluria maybe not being sure. I’ve seen severe pyroluria there is no question that it exists and that it is real.

    • Hi I’m in the same boat I found 7.5mg of Lexapro an absolute necessity to feel better. Even though I was on 300mg 5htp so much for natural therapy. I think some people who are mildly depressed can take 50mg of 5htp and there lives are so much improved really don’t have any problems at all.

  34. Norman Kilpatrick on

    Hi,

    my son has pyroluria. He has 17 out of the 20 symptoms associated with pyroluria including behaviour and seizures. I have 2 science degrees – a first class honors degree in Chemistry and a better degree in computer science. I am a scientist.

    Pyroluria is not a figment of anyone’s imagination. It is real. The medical profession can be sceptical about a topic and be proven to be wrong quite often. It doesn’t help the people who have genuine medical issues.

    This article is not helpful for those people who actually have pyroluria.

    Examples of how medical scepticism has been detrimental to peoples health include:

    – the development of a treament for ulcers based on an infection model. The person who developed this model was treated with a high level of sceptism.
    -the treatment of cancer with radio waves. The doctor I saw who used this method was treated like a quack because there could be ‘no possible way’ that radio waves could kill cancel cells. Now it is an accepted treatment.
    -manufactured drugs are superior to herbal remedies. I remember the medical profession running down herbal treatments as being traditional inferior treatments for decades. Now people are examining the active ingredients in these herbal products to investigate their properties.

    The skepticism displayed in this article will adversely affect the proper medical treatment and attention that people with a genuine condition should get. In my opinion, it is not a responsible way of approaching pyroluria,

    Norm

  35. Thank you for this article. My mum read a newspaper article about Pyrroluria disease and proclaimed she had the solution to all my problems. This article concisely summarised all the reasons why I should stay on my current medication.

  36. There was an article recently in the SMH where a person was diagnosed with pyroles and had a great response hence I think the large amount of interest in it.

    i have watched my friend parent her autistic child and have seen each new fad embraced as the silver bullet for autism – dairy free, homeopathy, kinesiology, vaccination (as the cause), melatonin (imported from USA), sugar, and now she is embracing pyroles as the solution. I completely empathise with her desperation because my child is autistic too, but the benefit of a science degree means I really question each new thing, and she seems to forget that each time she told me this was the cure, this was it!

    Hence why I looked up pyroles and ended up on this site.

    I have no doubt diet is an incredibly important part of managing anyone’s health, but I like to see many peer reviewed articles, and experiments replicated.

    I greatly appreciate the time you have taken bill to review the available scientific evidence and give your opinion. It is important too, to have the pro-pyroles view in the comments and I appreciate you leaving them there and responding intellectually as it actually does help clarify the arguments used on both sides.

    • Dear Jenny,
      Thank you for your articulate comment. You make a very good point regarding people looking for the latest and greatest hope for each ill du jour. I am happy to leave all comments pro or con, but will block posts with links to sales pages. This is a contentious issue and one which is clearly a hot topic in Australia at the moment. As you can see from my analytics image I left in another comment, the number of visits from here compared to the USA and elsewhere is quite significant. You’d think nobody in the USA had pyroluria. I find it odd that team Walsh is based in the US but the biggest market for pyroluria is in Australia.

      Kind regards,
      Bill

  37. Hi Bill,
    While I understand that there is massive controversy in the debate on whether or not Pyrroluria is a “real thing”, I felt I have to add my case to the argument. After a decade or so of chronic migraines and a life-long battle with depression – along with various other minor ailments, I can honestly say that I have tried and tested the majority of treatments regarding both disorders – to no avail. However earlier this year, my uncle who has suffered from many different ailments was diagnosed and has begun treatment to great effect. I gave it much thought and decided that I really had nothing to lose (with the alternative treatment actually coming out as cheaper than the medical ones I was receiving). Obviously, I tested positive, and have since started treatment. In the three or so months that I have been following the regime, I have found a vast improvement with the migraines dropping from 80% of the month to 35%. It has been a real life saver.
    I do understand that I may well be the exception, but I felt I had share.
    Thanks.

  38. I share your frustration at the lack of credible, published evidence on pyroluria. I am a PhD- qualified scientist, currently studying nutrition.

    And yet, I have been treated for pyroluria for the past 3 years, as has my child. It has changed both our lives. I know more than ten people who have been diagnosed with and treated for pyroluria. They have all experienced significant improvements in anxiety and/or behaviour.

    I’m waiting for those clinical trials to be done!

  39. I suffer type 1 bipolar. My pyrrole level measured over 400 micrograms the normal person having 20 micrograms or less. I supplement b6 and zinc and it does wonders for me. I once was a registered nurse . I realize little reputable research has been undertaken but when u have suffered for do long its worth a shot. Modern psychiatry is a joke. There is very little science to it anyway. Drugs like lithium were found by chance. And to this day medicine doesn’t even know the cause of bipolar. I personally have no genetic history and had never touched drugs yet at 16 was hospitalized with a manic episode (full psychosis).

    Modern docs aren’t seeking the cause of these diseases. Nor are they even open to the theory that these disorders could be caused by nutrient deficiencies. A good trial would be to see if any of the healthy population has ridiculously high pyrrole levels.

    Because the question has to be asked…what makes me differ from you? Why do i suffer this and not you? Science would say there is a cause and it should be identifiable…where are the studies? Ive looked on many journals. I find very little.

    Dont write this off. While im still on sodium valproate – the vitamins help me sleep and improve depression. Plus a glass of fresh OJ. It all helps lift the mind numbing brain fog and kindle a spark in the prefrontal cortex. I feel like i can focus and am not just a shell of a human walking around on autopilot (like that feeling you have after a sleepless night – zombie like state). Imagine that being your standard state. Yeah….it sucks.

    Anyway do the urine test. Try b6 zinc and vit c. Don’t quit ur regular meds. Best of luck. It helped me.

  40. It is clear from these comments ,that many people on this treatment protocol for pyroluria have had enormous benefit, myself included. Bill Walsh has rescued many of us from desperate and hopeless lives. I hope that one day, he gets the credit he so richly deserves. Please don’t be scared off trying this treatment, if all health solutions were known none of u,s would be ill.

  41. John Macgregor on

    As to the science disproving pyroluria, Dr Ben Goldacre’s recent 800-page dissection of the double-blind trial system – hopelessly compromised by drug company money, to the point where we cannot know what is true and what is not – unfortunately renders it all dubious.

    (In the early 1980s, in the media, I was an early champion in Australia of the double-blind – which remains, notionally, a pristine instrument.)

    I tend to prefer case studies and assays conducted by someone I trust. As to these, the present guru of pyroluria – Dr Wm Walsh – has a database of tens of thousands of sufferers of psychiatric illness indexed to their biochemistry. He has drawn statistical links between various conditions (such as anxiety) and biochemical states (such as pyroluria).

    (Pyroluria is not claimed to be the holy grail of mental illness BTW – just one of many conditions which sometimes underlies certain forms of it.)

    Finally, more subjectively, I know an awful lot of people who have been diagnosed & treated for pyroluria & who have improved or recovered entirely from their various conditions. There are also a lot who haven’t seen much effect. Fortunately a close family member & I are in the former category. We both saw our anxiety evaporate overnight with the zinc & B6 supplements.

    This in itself doesn’t prove pyroluria exists (maybe we were just zinc deficient), but when you are anxiety-free after many years, you don’t particularly feel like quibbling over hypotheticals.

  42. Thanks to Bill for this blog about pyrroluria.
    I have recently been diagnosed (by Dr Criticos in Marrickville) with this condition and prescribed a mix of vitamins and minerals to take for 2 months. In the meantime I have been researching, too.
    I have a PhD in Science and Technology Studies, with an interest in medico-scientific controversies. An early one that I learned about was the Vitamin C and cancer one that my supervisor (Dr Ev Richards) researched and published about, She described the complexities of that controversy in terms of the politics of a struggle over legitimacy of scientific truth claims between a respected Nobel scientist (Linus Pauling) and his followers vs a medical institution (the Mayo Clinic) and their followers. Other key players such as US drug companies, US health authorities. alternative health practitioners, people with cancer and other health conditions, and the dominance of a particular model of modern scientific medicine (eg, double blind RCTs). The Mayo Clinic won the first round. I am interested to discover that the controversy continues today, with some respected medicoscientific institutions finding Vit C can ameliorate some side effects of chemotherapy, arrest some cancers (only a small sample) and that a claim has been made that the Mayo study was faulty because they used oral administration rather than intravenous done in some of Pauling’s studies (http://www.nature.com/news/vitamin-c-injections-ease-ovarian-cancer-treaments-1.14673; http://ncbi.nlm.nih.gov/pmc/articles/PMC1405876/; http://www.ncbi.nlm.nih.gov/pubmed/1985398). The US National Cancer Institute is adopting a wait and see approach (http://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq). I like your attempts to be rational and impartial but it would be good if you continue to take care to keep an open mind, acknowledge the impossibility of being absolutely so, and allow for medical resistance to new theories/concepts. Science is basically conservative and new ideas often struggle for acceptance. Rigorous scientific studies (as measured by the golden rule of DBRCTs) need researchers to be interested in investigating a novel idea (including those who control the purse strings of funding bodies). I am intrigued as to why you haven’t expressed an interest in teaming up with others to carry out clinical research yourself. In the meantime, I will proceed today to get Dr Criticos’ Px filled (I found a chemist in Redfern who is much cheaper than the one in Broadway that usually does this) and happily be a case study.

    • Hi Viviane,
      Thank you for taking time to leave a comment. Most appreciated. I agree with all your points and I also support keeping an open mind. However, I learned early in my career that it’s important to keep an open mind but not so open that my brain falls out. You rightfully point out that science ebbs and flows at a snail’s pace. With regards to pyroluria, you will note that I have not censored the comments. I have let virtually every comment stand on this site, notwithstanding deleting those comments that were egregiously trying to use my site to serve their sales agenda. I’ve rather enjoyed the hearty debate and the vigour with which each side defends their views. I have been asked by a number of readers to conduct my own clinical research on pyroluria, but as I’ve said in multiple comments above, the onus is on purveyors of pyroluria to show evidence their theories are sound and not demand that everyone else prove them wrong. As a woman with scientific training, I am sure you can appreciate this view. I do find it an interesting research question and one that Bill Walsh should be addressing in partnership with independent researchers. With regards to my article, I am merely a messenger and pointing out that, as of this writing, we simply do not have any substantive body of evidence to show that pyroluria as a clinical entity is valid. It would also be helpful to see a more defined sign/symptom list rather than the waffly lists that appear all over the internet (signs/symptoms which could virtually apply to any illness). Aside from the ongoing debate, I do sincerely wish you all the best and am hopeful you are able to find some resolution with your health issues. Warm regards, Bill

  43. John Macgregor on

    A few comments, hopefully apposite:

    1. It’s true that there aren’t RCT evidencing the existence of pyroluria.

    2. However Dr Walsh’s biochemistry/psychiatric database links biochemical pyroluria to behaviour to quite some degree of significance, if I’m not mistaken.

    3. RCTs, which remain pristine in concept, aren’t in reality a gold standard any more, IMO, as drug company money has so distorted the fact-finding process that you no longer know what you are reading. How spun, how selected, how made-up. Dr Ben Goldacre’s book ‘Bad Pharma’ outlines this in excruciating detail.

    4. I had grave doubts about the reality of pyroluria even after being diagnosed, & numerous people on pyroluria forums took a dim view of my skepticism. (Cults quickly coalesce around illnesses.) However the results on my mood & anxiety were so quick, concrete & lasting that external evidence no longer matters – to me, personally.

  44. Dear Doctor Bill,
    I appreciate that you may have some scepticism regarding Pyroles & this is still a default position with many in the health profession but I beleive it is misguided. However, as a parent I have several years of first hand experience regarding Pyroles and Histadelia (under methylation). My 3 children were all diagnosed (finally, after years searching for ways to help their variety of mood, behavioral, learning etc issues) with Pyroluria and Histadelia. I can assure you that monitoring their pyroles & taking their prescribed & targeted nutritional supplements have been the only thing that has eventually helped rebalance them.
    We do blood tests every three months & I have even learnt now (by observation of their individual symptoms) to predict the results of their tests before they come through. When they are balanced, as supported by their tests, they are great. If the pyroles are up & consequently zinc etc, down their original symptoms reoccur. It is necessary for my children to take HUGE amounts of supplements (eg: they are on 6 times the recommended dose of zinc). However, if the pyroles increase in their bodies due to stress, missed/forgotten suppliments, or growth they are unable to absorb it & require even more, just to get them to a basic, normal level.
    Not everyone with mental health/behavioral issues have pyroles or methylation issues but ‘anecdotal’ evidence from many, many, many people I know personally (as well as, of course our own experiences) convince me 100% that these are real disorders that exist in MANY people & which can be treated successfully by a Phieffer trained medical professional. Sadly, from my many years working in childhood development I see an alarming number of children increasingly affected.
    Years ago, there may have been one or two large children & one or two ‘different’ children per school. Now, there is defiantly an epidemic (I believe for a variety of lifestyle reasons & at this stage permanent genetic changes brought on by our toxic world & unhealthy choices).
    Pyrole disorder & methylation problems ARE real & can be treated effectivly by MONITORED nutritional support. I see it for myself every day.
    The lack of so called ‘scientific’ peer reviewed evidence can be attributed by a number of factors. Studies such as these can be difficult to measure. For example, measuring how well a child has progress with autism. The tester may watch the child in a room & measure if the child spoke or not over a one hour period & then document that the child is non verbal. However, ask that child’s mother & she will tell you that after a certain period of time with Pyrole treatments that her child spoke last month for the first time ever, and was communicative yesterday. It can take a long time to heal from the damage caused by lack of treatment, & improvements can take be slow & seemingly minute. But ask any of the multitude of parents & patients who have undertaken such treatment & they will tell you that over the long term the changes are HUGE.
    Necessary studies need to be be longitudinal & are therefor very expensive & funding almost impossible to obtain. No big Pharmaceutical company is going to support a study into something they can’t monopolise or risk the loss of need of their other ‘medications’. PYROLES & nutritional methylation imbalances ARE REAL. Come to my house & watch my daughter go off her vitamin suppliments for 3 days & you can study it yourself! You will witness Jeckyl & Hyde! I appreciate that you are still leaving yourself open to the possibility that these conditions are real. If you are ever able to get to a Phieffer conference organised through Bio Balance, where Dr Bill Walsh & other trained medical experts are speaking & parents/patients attend (they are held annually) you could talk to Bill Walsh himself. Much thanks, K

  45. Simon Easterbrook-Smith on

    Hi Karen,

    Adding to the discussion, I had not come across histadelia before your post. As far as I can see it has remarkable conceptual similarities to pyroluria: (1) It is not a medical diagnosis (there is nothing about it in the ICD-10). (2) It is a popular label among comp/alt med people and, like pyroluria, its alleged symptoms are very vague – they could indicate anything (or nothing). (3) Its alleged treatment involves taking a rich array of nutritional supplements. There are no case reports in PubMed about the benefits of these alleged treatments (the same as for the alleged treatments for pyroluria).

    • Because it is not in journals does not make it a mirage. And the reasons why it is not in journals is complicated as a lot of us are aware. All I can tell you, as a PRIMARY source that pyroles/Undermethylation (as well as pyroles) has been medically diagnosed in our family by a specialist doctor. Our doctor was motivated to train in Phieffer’s protocol after having two children herself with severe issues. She was frustrated that noting in ‘traditional’ medicine could help them, in fact, traditional treatments were causing severe side effects. Once she tested & finally treated her own children for pyroles and methylation issues (which they tested positive for ) with nutritional supplements she realised she had found the cause of her children’s problems & was able to successfully treat them accordingly.

      What I do know through first hand experience is that very vitamin we have been prescribed has proven to be vital to my children’s health.There may be no case reports in PubMed but the 3 case studies I have witnessed & studied & over 7 years with my 3 very different, individual children prove to me beyond a doubt that without these specific array of nutritional supplements (each tailored & adjusted to the individual) my children are unable to function to their true potential. If either child misses any combination of the prescribed vitamins (combined for both pyroles &/or undermethylation) it shows up very quickly in their mental health & behavior etc. This is always supported by the regular blood test that we undertake. When their symptoms deteriorate the bloods usually show elevated levels of pyroles and decreased zinc etc. Regardless of what studies have or haven’t ‘proven’ it yet, it is not a myth, it is not my imagination, it is not quackery. Over 7 long years I have seen it with my own eyes, time & time again.

      For example, my son was unable to absorb b12 (undermethylation defisit), even sublingually. When in desperation we gave him an injection of b12 he was so excited & thrilled (despite hating needles) as he had never felt such clarity, energy & balance in his 16 years! If any of them miss their compounds (especially zinc, b6 or b12) accidentally for more than a day or two we all pay the price! It is what it is, any negative side effects on occur if they do not take the prescribed supplements for some reason or another. I have witnessed this over, & over & over again. When they are on them they are all functioning at the highest level at school & socially. Without them, they deteriorate & the whole family suffers with them. I can only report on what I have studied first hand obsessively over the last long 7 years.

      I guess the symptoms listed on websites may seem vague, yet they all indicate chemical imbalances in the body, especially the brain in some form or another. They are generalised indicators only and recognize the complexity of individuals. It is not suggesting that anyone with these symptoms has pyroles or methylation issues. Rather, it is suggesting that if you do have pyroles or methylation issues & any of these symptoms that these conditions can be improved with supplementation.

      Other people may have similar issues caused by nutritional deficiencies not related to pyroles or methylation issues. I have witnessed these people being healed of their symptoms very rapidly with tailored supplementation of similar vitamins. They are the lucky ones though & once re-balanced require only a healthy diet to obtain the nutrition they need.

      However, at this stage it is hypothesised that pyroles/histadelia is an epi-genetic alteration, and as such, a deficiency for life (until medicine chooses to catch up). This has been proven to me by my children many, many times. They demonstrate repeatedly that their bodies cannot metabolise or absorb the nutrients prescribed. They require HEAPS more suppliments than the average person. If they stop (or even reduce) their meds, they deteriorate rapidly & our house becomes a living nightmare. Take the correct, regularly balanced supplements in conjuction with regular testing & life is great for all. Simple as that. This is PRIMARY research. What more proof could I need?

  46. Dear Karen,
    I can certainly understand your emotional investment in pyroluria given your personal situation with your own children. To be fair, I am not completely discounting your testimonial, as testimonials can be the impetus for developing hypotheses which can later be tested under controlled circumstances.

    From your posts above, I detect a bit of distrust in the system and perhaps a bit of cynicism towards the pharmaceutical industry. Whilst I have my issues with “the system” as well and certainly do not share any torrid love affair with big pharma, I will say I think these are both smoke screens that are often used by alt/med as a distraction from the fact that their theories do not have any firm body of evidence behind them. Big pharma and “the system” are certainly no boy scouts out to save the world, but the fact that they are not always ethical in their approaches does not give a default win to the existence of pyroluria.

    As I have said on numerous occasions in my responses (and I’m getting tired of repeating myself here), when it comes to pyroluria, the onus is on it’s proponents to present evidence beyond just anecdotal testimonials that it exists, not on dissenters to prove that it doesn’t exist.

    I’m sure Bill Walsh is no slouch and I would imagine that the pyroluria business has been lucrative in a number of ways including testing, prescribing supplements, as well as training health practitioners in different countries.

    My suggestion would be that he take some of his profits and fund independent research (via independent researchers) that neither he nor any of his colleagues can possibly influence. Stories like yours, as I said, can serve to inform the development of testable hypotheses.

    It is clear that the earlier research essentially debunked pyroluria, but if he’s not satisfied with that, then perhaps he should not those areas of the earlier research where he thinks they missed the mark and perhaps run more robust testing protocols/assays.

    Dr Easterbrook-Smith (who has left multiple comments above) is a distinguished researcher in his own right and is far more qualified than I am to comment on molecular biology topics. I would suggest reviewing his responses to different commenters, as he has provided a number of helpful contributions.

    Thanks again for your comment. I look forward to Bill Walsh Inc. stepping up his game and perhaps looking for ways to fund independent research around pyroluria.

    Kind regards,
    Bill

  47. Wow, i work in a compounding chemist in N.S.W, i personally here EVERY SINGLE DAY , people who are being diagnosed with pyroluria disorder and being and treated ,the results and testimonials we here are absolutely amazing, from young kids to older clients, people getting over problems that would have been treated with drugs (zoloft ect.) One size does not fill all when it comes to this stuff, genetics, lifestyle all play a HUGE part also, if you are wanting more information about this, i highly suggest to go and see a BIO-BALANCED trained doctor, its the only way. Good luck , this is no nonsense

    • Hi Beau,
      Thank you for visiting my site and taking the time to leave a comment. I do appreciate your enthusiasm around the testimonials, but as has been pointed out in previous comments, outside of a research trial which is controlling for covariates, there is no way to know if these results were due to the supplements or other lifestyle factors. If someone is desperate for a fix, then the belief that the supplements will make them feel better can, not so surprisingly, have the result of making them feel better. I’m not trying to piss on the parade here, but just making the point that as of this writing, the only people saying this exists are 1) practitioners associated with Bio-Balance; and 2) Bio-Balance customers who have claimed the supplements fixed them. On the ugly science side of things, the evidence goes against pyroluria and, to date, we have not seen anything else come out that corroborates its existence as a clinical entity. I am also curious to see this research and would be happy to report on it if and when it ever becomes available.

    • “It’s the only way” .. no, it really isn’t. Beau, I can counter your anecdote with my own anecdotes of hearing about Biobalance-trained practitioners not getting results, and sometimes making people worse.

      ‘Correlation, not causation’ still stands. Zinc deficiency is a real thing too. The issue is that the proponents of pyrrole disorder need to step up their game and prove it. There are significant holes in the literature.. like the existence of the HPL+Zn+B6 complex. As far as I can tell, they *think* it exists (based on in vitro studies?), but haven’t proven it (in vivo). That is *the* mechanism that pyrrole disorder is based on: the HPL+Zn+B6 complex making both Zn and B6 unavailable biologically, thus creating a relative deficiency of both and leading to signs and symptoms. Just because giving Zn and B6 to these people makes them better, doesn’t prove the mechanism of pyrrole disorder. D-methamphetamine treats fatigue quite well, for instance (that’s an extreme example of giving a substance that causes a physiological effect, but does not address the cause).

      • Hi Jason,
        Thank you for your insightful comment. You make a good point about how you only seem to hear about positive testimonials. But it is also true that not everyone benefits from this (as some commenters have noted). Conveniently sweeping under the carpet those patients who did not benefit and highlighting those that do benefit is often par for the course with many alt-med treatments. I also agree with your remark that correlation does not equal causation. It is very difficult, if not downright impossible, to have a debate with someone who is emotionally invested in their pro-pyroluria views. As I have said over and over again, I’m happy to publish the results of new studies that are scientifically robust and independent of all Bio-Balance influence. This would be very helpful to inform the debate. Kind regards

  48. Again, Bill, thank you for giving everyone the opportunity to contribute to this debate.
    Regarding the danger that someone treated with the Phieffer protocol might be at danger of having other serious conditions overlooked (eg: cancer etc) I would just like to remind everyone that the Phieffer trained doctors ARE MEDICALLY TRAINED DOCTORS first & foremost. They have looked at all the evidence presented regarding pyroles and methylation issues etc by their own free will. Based on their knowledge, research & results seen they can then make an informed choice to offer Phieffer testing & treatment if they deem it necessary. This tool sits alongside all the other diagnosis & ‘treatments’ they can also offer & does not negate everything else they know about or are able offer regarding medicine. They do not take people off their current meds, instead monitor carefully the patients progress which may then lead to a reduction or cessation of other medication over a period of time.

    Regarding the placebo effect, it is difficult to imagine my 6 yr old being able to stop smashing the house & neighborhood up, wetting the bed, teeth grinding, stop itching all night, being able to finally focus & learn at school, etc just because I told her “these magic pills will fix everything”.

    Regarding Dr Walsh having a monopoly on the Phieffer ‘money making system’, the labs are recommended because they are the labs able to conduct the tests properly. We tried going to different labs twice, but on both occasions they stuffed the tests up through mishandling of the samples. Our supplements can be ordered through any compounding pharmacy at all & we regularly shop around for the best quality & price.

    Regarding ‘research’, the Phieffer Medical Centre and the Walsh Research Institute are NOT FOR PROFIT organisations with decades of research behind them. As this research seems ‘unacceptable’ to some (not all) proponents of ‘traditional’ medicine Walsh is currently undertaking a human research study with Griffith University aimed at leading to a future placebo controlled double blind study.

    Thanks again for your site Bill.

  49. It’s really odd seeing this “doctor” fight so hard to attempt to prove all of us Pyroluria sufferers are making it up, or we are all apparently falling for some type of placebo effect. I had so many ignorant doctors ignore all the blatanlty obvious signs I had, while snickering and throwing SSRI scripts at me everytime I tried to broaden their horizons.

    Turning my back on uninformed M.D. and looking into epigentics and Biomedicine and nutrition (which ended up with my finding Pyrloruia after a lifetime of suffering and being on disability for (“Fatigue and bi-polar” clinical terms that mean nothing)) literally saved my life as I was in a very bad place when I finally began treating myself. At 34 and after only 3 weeks of treatment I felt better than I had in my entire life and was shocked at how easily I was able to cure my lifelong illness that had held me back and cost me so much.

    I have gone back to school and am working toward becoming an ND right now due to close minded people like you who cannot understand symptoms without a sheet of paper and number with an arrows sign next to it to explain to you what it means. It angers me to no end to think about the amount of others suffering like I did for no reason other than to fit into the established system as consumers of SSRI’s.

    It’s shameful and when we look back on our society in 50 years , after epigenetics have redefined medicine, I fear all the wasted lives due to this old and outdated modality of thinking regarding nutrition, genetics, and biomedicine. That msot MD”s dont even understand methelation cycles, histamine levels, and proper metabolism rates and the way these things interact, in this modern day, is mind blowing considering how accurate the date is on how these balances affect the neurological systems in the human brain.

    So for anyone reading this and wondering if the many comments of Pyroluria sufferers who had they, or someone they love, saved by these Dr’s brave enough to defy the system, Please do your own research, I would start with Mensah medical, Mr.s Walsh’s research and particularly Australia, Uk, and if you are fluent in German , German studies on this disease where it is not a debate any longer.

    • He’s not saying you’re making your signs and symptoms up. He’s also not saying your treatment is placebo. The major issue is, and has always been, that the proposed pathophysiological mechanisms of ‘pyrrole disorder’ has not been proven. At best it’s correlation, not causation. And, the burden of proof is on those who are proposing the idea, not on others to disprove it.

      • I have read most of these comments on this site and everyone goes around in circles. I am of the belief that Pyrolles are detectable by a urine test. Symptoms of stress/anxiety and others are addressed through Zinc and B6 supplements. This does not mean that Pyrolura is a disease. It means Zinc and B6 help treat stress! And people with Stress have Pyrol levels in their urine!!!!

  50. Simon Easterbrook-Smith on

    Hi Scott
    Some thoughts: (1) I am sorry to read that you have had a poor experience with evidence-based health professionals. (2) I agree that anti-depressants like SSRIs are often over-prescribed but for people like me they can be helpful. (3) “Epigenetics” has become a bit of a buzz-word in the comp/alt community with little understanding of what it means. In my day job I have helped one of the world-leaders in this field (doing number-crunching for her) – she is scathing about how that technical term can be misused. (4) I had a look at the Mensah site. It seems to be another largely evidence-free comp/alt med site. I note with mild but not unexpected amusement that it includes a “Shop” in which visitors are invited to buy a wide range of supplements – they look like standard mix of products which compo/alt med sites sell to me.

  51. Thanks for this article Bill. I went to an integrative doctor in regards to Thyroid and ended up being told I may have this disorder based on a simple questionnaire asking ridiculous questions about overcrowded teeth and where I prefer to sit in a room. I am very cynical about it but will pursue it as I am keen to have this doctor treat my thyroid (didn’t expect this sideways step though), thus I will offer myself as a research subject. I will report back if anything changes.

  52. Don't waste your money on

    It does not work trust me I have the stupid disease and it’s stupid because I invested a year and a half to pursuing treatment.. spending money on integrative doctors appointments, tests for EVERYTHING… gene mutation, heavy metals, stool, copper, unbound copper, methylation, zinc, liver, thyroid. The money you have to spend of compound pharmacies is not cheap either. These tests are expensive also! Vitamins will help but you can shove the high dose zinc down the toilet. 100mg zinc picolinate I was instructed to take after 6 months of 50mg. Then I just stopped the zinc feel better, start zinc feel severe depression… the last year has been nothing but a nightmare. I feel so disgruntled because I wish I was a success story but unfortunately I see now why it’s not a proven science!!!!!!!!!! I was monitored the whole time so never became low copper. I was never high copper, nor high pyroles, I was alway low zinc and when I increase my symptoms and physical health was worse than ever from the stress of it all!! I was borderline pyroles. I put my trust in the doctor and over my better judgement pushed through the hell the zinc caused me and I pretty much destroyed my life.

  53. Oh and a friend of mine also has pyroluria, saw a famous doctor in Sydney and followed the treatment and became suicidal so it shows I’m not the only one, this happened at the beginning of my treatment and I went ahead with it anyway thinking she must of done something wrong, but i’ve just been reminded of that so I’m not alone…. I’d love to know how many people it works for and how many it’s failed I don’t see too many failed comments online which is unusual aren’t people more vocal when things don’t work out??

  54. Dr. Sukala – first, thanks so much for looking for evidence-based information about this topic. I am science-oriented myself, and it bothers me a lot to see the scare-mongering by many “practitioners.” That said, I’ve got my own personal experience too. Yes, it’s just anecdotal evidence. But after working with doctors who prescribed medications that helped a bit, but also had horrible side-effects, I needed to try something else. I found Dr. Walsh’s work, and was impressed by his record of working with 30,000 patients across many mental health problems (i.e. bi-polar, schizophrenia, autism, etc.), and 35 years of experience. Compared to my drugs ($700 / month), I spent a very small amount to have an appointment and get tested ($700 total, one time, including all the tests, plus $75 / month for follow-up appointments when needed). I was diagnosed with pyroluria and over-methylation. And the supplements are a lot cheaper, and I can buy them on Amazon. The practitioner is NOT making a killing here. Anyway, since working with my practitioner, I am off all those medications. I feel better than I have in 10 years. My mood is stable, my anxiety is far reduced, I can concentrate and think clearly, I can remember things, and far more. On the medications, I couldn’t even hold a conversation for an hour and had to stop working completely. The trouble, of course, is that this is all just anecdotal and doesn’t “count” in the evidence-based world. But given the results so far, I’m sticking with it!!

    • Where is Dr. Bill’s comment here? He’s clearly stumped and writing just for the “Shock Value”. Unfortunately this is what breeds terrible media coverage. He should just start trying to get ona reality tv show or join the american media.

      • I’m busy with my life and career. My blog is a something on the side and I don’t always get a chance to respond with a magnum opus for each individual comment. Inflammatory posts left by trolls will get little to no response since I don’t argue with members of the Flat Earth Society. Legitimate posts that are left by genuinely interested individuals will receive the attention they deserve. I will review Ellie’s comments when I have time.

  55. Also wanted to add – William Walsh’s work found that pyrrole’s was dominant bio-type in only *20%* of schizophrenics. So I wouldn’t discredit anything based on the tests you cite. As he says in his book, these mental disorders seem to be an umbrella term that may cover many root sources. It would be more meaningful to find people who test positive for pyroluria and treat them, then track those results.

  56. Griffith University is currently undertaking a study in this area I know the results are looking promising in regard to nutritional medicine and pyrrole disorder in children I work I the area of integrative health and this will be the beginning (hopefully) of the start of more evidence that this disorder is real and is treatable

  57. I feel like when I don’t take my supplements my stress gets out of control, so maybe there should be more research done into the zinc/b6 deficiency side of things as I’m really confused and I don’t know what to do about it..

  58. I don’t really see anything here that supports that Pyrrole disorder doesn’t exist. Your basically claiming that its a con and hoax to get you to buy “expensive” vitamins and supplements. Since when is b6 and zinc expensive? I’m in the US and they are probably two of the cheaper supplements you can buy. To say that their is a conflict of interest in testing and that its expensive is again a total joke. $80 in the grand scheme of things is pennies compared to the pharma medications usually used to treat anxiety/depression. Not to mention any labwork any allopathic doctor out here would prescribe will easily cost several hundred if not thousands of dollars. Maybe the testing would be more widespread and cheaper if articles like this didn’t come out. The symptoms may seem vague, but they are actually much more specific than you might think. Generally people with pyrrole disorders can overwhelming relate to most of them.

    • Hi Bob, have you read all the comments after the article. Your sentiments have been echoed multiple times by other readers and responded to accordingly. Please spend some time sifting through them. And to reiterate a point I’ve made numerous times, I have no love affair with the evil big pharma and will certainly acknowledge the “establishment” isn’t made up of a bunch of innocent boy scouts, but this does not confer a stamp of approval to pyroluria. Kind regards

  59. Pyroluria has not really been debunked by the scientific/medical literature. The initial compound identified was labile and now there are methods to stabilize the compound when the urine is collected. The error in identifying the original compound was later corrected and published, but the researchers who claim to have debunked pyroluria were only testing for the original, incorrect compound. The condition is treated by alternative physicians and they are not generally found in academic centers with the expensive equipment to do the proper chemical analysis. I set up the assay in my own academic research laboratory in a medical school but when I tried to obtain urine samples from autistic children for a double-blind, placebo-controlled clinical trial, the physicians ultimately refused to give me samples because they said that anything remotely related to alternative medicine would jeopardize their autism grants from NIH. They had already collected urine samples for other tests, but just poured the extra down the drain. Now I have found evidence in the literature, for several inborn errors of metabolism, in which an intermediate of the reaction forms a covalent complex with P5P and flushes it into the urine – all analyzed with Mass Spec data and published in very high quality scientific journals. These complexes are structurally similar to the reactive compound in pyroluria. I am sure that if the academic physicians really want to (and risk their grant funding), they would discover the errant genetic pathway leading to this “phantom” disorder, whose treatment has helped thousands of people. Meanwhile, just because there is an absence of academic data, doesn’t mean that a disorder doesn’t exist. Besides, in comparison to other medical tests, the urinary test for pyroluria is quite inexpensive and noninvasive. The treatment costs are minimal compared to pharmaceutical prescriptions. So there really is no harm in trying. The initial treatment was a high dose of B6 and compensating zinc. However, now it is known that pyroluria is associated with oxidative stress and can be treated with high doses of an antioxidant, such as taurine and/or NAC, with much lower doses (within the DRI guidelines) of B6 and zinc. Even camel’s milk has the right ingredients to work over the long term, but camel’s milk is much too expensive, if cheaper alternatives are available. Dr. Sukala, I think you shouldn’t believe everything you have learned in medical school. It’s time to listen to the patients a little more.

  60. Your sources are outdated, and your information is incorrect. Your not proving anyone wrong. Why didn’t you mention Dr. Walsh’s internationally acclaimed medical study from the Walsh Research Institute including 40,000 results completed less than a decade ago? You didn’t manage to mention any of the updated research currently being utilized. Again, you search for the oldest out of date information. You are merely proving that you only know how to validate your delusional opinions with outdated information. That is the most shocking part of your “Shock Value” writing approach. Also, in this case, you are doing an injustice to the human race. Currently psychiatry is the weakest point in medicine. Over used prescriptions that have terrible side effects barely treat mental and emotional patient populations. The practitioners who are literally changing the mental state of those who suffer with advanced nutrient therapies should be discredited because you spent a little time forming an uneducated opinion? Hope this helps your ship sink a little bit farther. In the best-case scenario, you could make a little money doing this. I’m sure the prescription companies would be happy to pay you for your soul. Wish you the best, I’m sure you’ll need it. The world has a way with excreting waste just like your body does.

    • I am responding to Daniel’s comment but it is directed towards the reader that is open to looking at the facts around pyroluria. Daniel appears to have vented his rabid spleen by writing three inflammatory comments on my blog, but it is clear he is not interested in a healthy discussion on pyroluria but instead on just beating his views down everyone’s throats no matter what evidence, or lack thereof, is presented. I encourage the interested reader to spend time reading all of the comments on this article before posting a comment.

      So,to all readers who are interested: 1) As I’ve said repeatedly in these comments ad nauseum, to date there are no recently published studies on pyroluria, but I would be most interested to read them if/when they are published; 2) If Bill Walsh has data on 40,000 pyroluria cases less than a decade old, then why has he not prepared his methods and results in a manuscript and submitted them to a journal for peer review? It would be helpful to see exactly what Walsh Inc. is claiming as a cure. Does it work in the short-term? What about long-term data? Did he control for other variables like diet, exercise, medications etc that might have influenced the results? 3) For the purposes of this article, I did not go out of my way to cherry pick the data to make it say what I wanted. It was all I found that was available. 4) The pro-pyroluria crusaders are quick to demand that pyroluria skeptics conduct and publish research but, as I’ve stated numerous times in the comments section (and here again – sigh…), the onus is on its purveyors to prove via independent research (ideally peer-reviewed science) that pyroluria is responsible for the claimed mental disorders. 5) Daniel states that psychiatry is the weakest point in medicine. This is just Daniel’s opinion (and who is Daniel and what are his credentials to make such a claim)? How does Daniel quantify psychiatry as the weakest link in medicine? Sure, there are strengths and limitations to all disciplines. 6) I agree that prescription meds are probably overprescribed and that people might also see improvements in their mental states through exercise, healthy eating, and counselling using CBT, DBT, or other methods. 7) Daniel has clearly not spent any time reading my blog or the comments because if he had done his homework, he would have seen that I am also quick to have a dig at big pharma and prescription medications. I remain completely independent and my views are my own under no influence of external stakeholders. 8) Daniel can waffle on and troll my blog all he wants, but at the end of the day, I have remained transparent in my writing and have been forthcoming in stating that should new evidence arise, I would be happy to amend and add this evidence to my article.

  61. Yes, it would be terrific to have peer-reviewed scientific data on pyroluria. But as I mentioned in my post, there is a built in bias among traditional physicians about doing research related to alternative medicine. Alternative physicians don’t have the type of academic appointments and expensive research equipment necessary to carry out clinical trials on pyroluria. And the traditional academic physicians won’t participate in research that might be called alternative medicine. In addition, it is the traditional physicians who populate grant reviewing committees and pyroluria proposals are blocked. I know from experience as a grant reviewer for many national agencies and a successful grant writer over a long career, but whose proposals on pyroluria were always turned down. Walsh essentially funded his research through his foundation, but is now retired and his foundation closed, I think. Unless a private donor steps forward to fund the research, there will be no further publications on pyroluria. And even if a private donor steps forward, there will be no way that traditional physicians will consent to give their patients’ urine samples.

    I talked with Donald Irvine before he died and I asked him why he had stopped working on pyroluria and let the research die. He had published some of the key papers on pyroluria in the late 60s and 70s. He told me that he still very much believed that it was an important factor in mental health in some people. However, he said that after there was a controversy regarding the exact chemical nature of the labile urine compound, the head of the institute, where he worked, ordered him to stop working on pyroluria or be fired. He chose his job.

    • Wow Fran, thank you for that insight. Utterly unsurprising.
      There is now a new generation of complimentary health care practitioners (of which I am one) as well as conventionally trained paediatricians and some GPs (whom I regularly refer to) who are having excellent LONG TERM results with patients, especially children treated for pyrolles. I hope that those reading this and considering pyrolle testing/treatment are not discouraged by the ‘non scientific’ nonsense and take their health a bit more into their own hands rather than continuing to delegate it to ‘experts’.

      • Maria, it’s easy to throw words around like “long-term results” but how do you know? Has there been a systematic monitoring and 6-monthly or yearly follow up of every patient with supposed pyroluria? Unlikely.

        I find it interesting that when I look at the analytics on this article, there are over 4 times the number of views in Australia compared to the United States, and next to no views anywhere else in the world. Australia has 24,000,000 people and the US has 320,000,000. That’s around 7% of the US population but the interest in pyroluria is comparatively higher in Australia than the US. Why is that? Has pyroluria been virtually eradicated in the US and abroad? I would imagine Bill Walsh would have made his mark with pyroluria in the United States before coming down and marketing it through his courses in Australia. Just because a GP has decided to cross-over into the alt-med side does not, by default, validate pyroluria in lieu of no independent evidence.

  62. There are several folks who have taken their good time to come on this site and share their personal stories regarding how treatment for pyroluria has helped them or ones in their family. The stubborn insistence on double-blind peer-reviewed studies for believing ANYTHING is one of the myriad of things that continues to keep conventional medicine in the dark ages as pioneers such as Dr. Walsh continue to progress. It’s like watching a tornado come at you, but not believing it until you see the proper forecast for a tornado from a “qualified” meteorologist. Please, please understand, “absence of proof is not proof of absence”.

    • Beautifully put. Hundreds of genuine people, many of whom have visited dozens of doctors, are receiving positive results, taking inexpensive vitamins as treatments and experiencing remarkable improvements in health. Have some compassion, show some understanding and realise that as global communication improves we will see health communities develop their own solutions, not based on expensive randomised controlled trials, but common sense and dedication to compassionate health care.

  63. Unfortunately for every person who has said the pyroluria treatment has worked for them there are many who say they do not benefit, becoming ill due to over-supplementing. I went into a doctor with normal zinc levels, very high B6 levels, and was not really deficient in anything, very healthy, and I was informed I might have a disorder for a condition that causes those deficiencies and some mental health issues – how can that be?? My expensive urine test supported this claim, expensive because I did not require it as I had no clear symptoms. I was also diagnosed with a questionnaire with about 40 questions and if I said yes to 15 I was suspect, well I have asked about ten people since and they all can answer yes to at least 15. I quite like my perfectionist personality!! Granted I am lost with the scientific discussion of this condition but I really I think I should only be treated if I am actually sick, not just different.

  64. Hi Dr Bill,

    Thanks for writing this article, it was interesting to hear your opinion and point of view and it has certainly left me a little skeptical of pyrrole disorder.

    I was diagnosed with this a couple of weeks ago but before forking out over $200 for vitamins I wanted to do some research.

    I was diagnosed with Graves’ disease a few years ago and spent hundreds having tests, seeing endocrinologists and taking medications until I was eventually told that maybe I didn’t have it after all.

    And so the testing continued but no one can tell my why my thyroid antibodies are often out of whack, why I am deficient in vitamin d, zinc, iron, b12 etc and why my copper levels are through the roof. No one can tell me why, at 28 years of age, I have joint pain, daily anxiety, episodes of depression and then uncontrollable anger. No one can also tell me why I’ve put on 12kg in the past 6 months when I watch what I eat, steer clear of processed food, eat organic where possible and exercise daily.

    So when I finally got this diagnosis I was excited. I felt like there was hope and that finally I could take back my life.

    Now I have read your article and I’m left feeling hopeless once again. It was a GP that diagnosed me but past experiences have given me little respect when it comes to mainstream medical practitioners. Nevertheless, I thought I might have an answer and a way to get better.

    I would appreciate any advice. I know you can’t give a medical opinion but surely there is a reason for my ongoing symptoms and if it’s not pyrolle disease, what could it be?

    • Hi Amy,
      Thanks for your thoughtful comment. I can clearly see you’re frustrated with all this, and rightfully so. If there are all these physical things going on with you, you have to ask the question whether the anxiety, depressive episodes, and anger are happening as a result of the physical issues or are occurring in the presence of them (cause and effect vs. coincidence). Perhaps it’s worth getting a second opinion from a different endocrinologist. I know there are plenty of pro-pyroluria readers of this blog who would throw a blanket over the symptoms your listing and classify it as pyroluria. However, the list of symptoms are so wide, varied, and disparate (and some even a bit absurd such as “difficulty remembering dreams” or “tendency to skip breakfast”) that pyroluria could pretty much be the diagnosis for virtually every conceivable ill. There are a lot of anecdotal testimonials stating that vitamin supplements helped their depression and anxiety, but I think what’s important to point out is that we don’t know if these benefits were sustained over time (weeks, months, years?) or if it was a flash in the pan mental boost (placebo effect?) and then we just don’t here any more from these people. There are so many variables that can account for an illness and also benefits of a treatment. But without controlling for confounding variables (as in a research study) it is difficult to know if the symptoms were improved by the treatment or other variables like eating better foods and doing exercise. I’m not going to make any guesses on what your condition could be because that’s beyond my scope and this is an online forum, but I would suggest discussing it with your GP and consider getting a different opinion from another endocrinologist. Sorry I can’t be of further help, but please do stop back and post a comment to let us know how you’re going. Kind regards, Bill

      • Bill, the symptoms described in pyrolles are not ‘random’ or ‘could be attributed to other things’. If you understood the biochemistry behind the symptoms it would make much more sense, for example ‘not being to remember dreams’ is attributable to vitamin B6 deficiency which plays a big role in memory recall. ‘Not being hungry in the mornings’ is attributable to strong zinc deficiency because zinc plays a big role in olfactory and gustatory senses. So whilst the symptoms of pyrolles may sound strange, varied, unusual to a layperson, one needs to look at what part of biochemistry is driving the symptoms. Not every person with pyrolles will exhibit all the symptoms. They vary greatly by individual! This is where randomised controlled trials become difficult.

        • Maria, I can appreciate your tenacity and passion about your beliefs. We both share a common desire to want to help people. And that’s what I’ve been actively doing for 25 years in the health industry. I’ve been in the trenches long enough to know that the mind is very powerful and people can think themselves well or sick.

          I don’t know if they taught you a symptom-disease script at Nature Care College, but to unilaterally assume that not being able to recall dreams is solely attributable to a vitamin B6 deficiency is naive. Last night I had vivid dreams I was able to recall. The night before I dreamt but was unable to recall the details. Does this mean that I had a B6 deficiency two nights ago but it was cured as of last night? I’ve had days where I wasn’t particularly hungry in the morning, especially if I had a large meal the night before. Does this mean that I have a zinc deficiency? Maybe I do, but wouldn’t it be better for me to go to my GP and had a proper work up done to see if I had a physiological zinc deficiency? http://bestpractice.bmj.com/best-practice/monograph/1195/diagnosis/step-by-step.html.

          There are like 50 symptoms for pyrrole disease spread across who knows how many alt med websites. I think it’s virtually impossible for someone to have all those symptoms, but highly likely that 95% of the population will have at least a few of them. Does that mean they have pyroluria?

          So you think that because the symptoms for pyroluria are so disparate and different in each individual, then we should just give up on randomised controlled trials? I don’t think so.

    • Amy – I suffered from a wide variety of symptoms since childhood and was diagnosed with selective IGA deficiency finally this year. As a consequence I reguarly suffer vitamin deficiencies, especially D3 and B12. I get lots of respiratory infections, joint pain, exhaustion etc as a consquence, so when needed I take supplements. I go to see a real GP when anything new crops up and also receive CBT to cope with anxiety and depression. Sometimes I need anti-depressants too.

      Like Bill said, the so called symptoms of pyroluria could be anything, including selective IGA deficiency. I’d definitely have pyrolles in my urine (they make up B12 which I’m none too good at making use of) and no doubt the special supplement mixes being pushed would help me to a degree by dealing with some of my current temporary symptoms, but they wouldn’t “cure” me and would have masked my condition. Worrying because a blood transfusion could be very bad news for me.

      It scares me to think that people with real, treatable, conditions and illnesses could be duped into believing they have pyroluria and potentially put their health further at risk.

      Bill – I only just heard of pyroluria today when someone stated that their daughter wasn’t autistic, just had pyroluria. My daughter is likely autistic so of course I immediately looked it up. I went no further when I discovered nothing but websites offering to diagnose you and cure you if you pay. No wikipedia article makes me suspicious… having the biggest promoter of the disorder establish his own journal to provide peer reviewed support seals the deal! No scientific references except original research that nobody yet has relicated… circular references (“it’s true because [link back to me saying it was true somewhere else] said so”… attacks on real science… Reminds me of reading climate change sceptic sites!

  65. Hi Dr Sukala,
    I have just come across Pyroluria today and believe I exhibit all of these symptoms and have made an appointment with my GP to be tested. I started having seizures after childbirth (no seizures in between children 2.5years between first and second) so I am desperate to find out what causes them, I also have terrible mood swings and anger (maybe I just need to sleep for a week) anyway anything for me is worth investigating.
    I have read most of the comments and will continue to read them when I get the chance.
    Thank you

  66. Bill, I’m sorry but a doctorate in exercise physiology is a bit of a far cry from allowing for an understanding of the biochemistry involved in psychiatric conditions.
    Have you ever worked in a clinical setting Bill or only in the research/academic fields? Because if you’ve ever treated anyone for depression, severe anxiety, nutrient deficiencies, autism, etc and they came positive for pyrolles and after nutritional treatment felt 1000% better, then you wouldn’t be so quick to dismiss this condition. Whether it’s called ‘a disorder’ or not is irrelevant. What matters is people get tested, they take supplements, they get better- without psychiatric meds which is the only current alternative.

    • Maria, You can have a dig at my qualifications and make assumptions, but this only detracts from the issue at hand and only weakens your own argument. I trained as both a dietitian and clinical exercise physiologist at a major university in California, both programs of which included a thorough beating over the head with chemistry, organic chemistry, biochemistry, advanced biochemistry, nutrition, advanced nutrition, diet therapy, genetics, and much more. Of my 25 years in the health field, over 15 of them were clinically-based in hospitals and clinics. And I am intimately familiar with both depression and anxiety on a personal and professional level.

      Looking at your website, you appear to have been trained in an alternative program, most of which is dismissive of so-called “mainstream” science. How long have you been in the health field since changing careers from marketing? One year? I also see that you’re promoting pyroluria testing on your website, so I won’t bother getting into an ideological debate with you.

      Whilst there are plenty of people claiming the supplements “cured” them of their anxiety or depression, how many people are there that have tried the supplements and experienced no improvement? Or how many people thought the supplements helped them at first, but then later found themselves back in the same depression/anxiety as before? This is why I’d like to see more independent research on pyroluria.

      I think Dr Steven Novella, whom I mentioned in my article, sums it up best:
      “What do you think science is? There’s nothing magical about science. It is simply a systematic way for carefully and thoroughly observing nature and using consistent logic to evaluate results. Which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic?”

      • True, I haven’t been in practice for long but have been training in this filed for a while, including Mindd foundation training. I wouldn’t say nutrition training outside a university environment is any less rigorous, it is just more clinic focused. I don’t have any affiliation with pyrolle testing companies, the testing reference on my blog is to inform people that testing exists and how much it costs. I don’t sell any supplements on my website.
        Controlled double blind experiments are useful when testing pharmaceuticals, but unfortuntunately have very little use in the real world where dosages need to vary by individual, diets vary, stress levels vary, etc. It would be of little use to conduct a study on pyrolle treatment because it is so individualised! Which is the whole issue with the ‘scientific’ approach- standardised experiments in a lab. I think we’ll probably never agree on this, but what I want to point out is that by portraying something like pyrolle disorder in a light of ‘invalid because there are no peer reviewed studies’ is incredibly reductionist and unhelpful for people who are seeking solutions to their health issues. I’ve seen people who’ve been on psychiatric meds for 20+ years with little or no improvement get their life back after taking supplements for pyrolles. I would encourage your readers to do more research and make informed decisions. As mentioned above, Dr William Walsh lectures and teaches traditionally trained doctors in Pyroluria treatment.
        Last thought, 20 years ago IBS was considered a made up condition. 10 years ago, CFS wasn’t even acknowledged. We can wait for controlled double blind trials or we can change our diet, lifestyle and re-balance our nutrients and witness the results in n=1.

        • I would say training at a TAFE is significantly less rigorous than at a major university. Most certificate courses are a year or two. Most universities in the United States (where I attended), required over 2 years of the core sciences alone which included all the blood and guts and chemistry, and that was before even getting into the specialised major units. A typical and convenient alt-med criticism of uni-trained professionals is that they’re shills and robots doing what they’re told. This is false. Universities are not brainwashing people into “towing the line” against pyroluria crusaders. You learn the hard sciences (and acknowledge they are always advancing) so you can think for yourself. I do not promote pharmaceutical medications and I resent it when people paint me with that same “big pharma” brush.

          Did they actually teach you biochemistry or did they give you a symptom-disease script to follow in practice? Have you actually ever conducted clinical research? Are you able to systematically evaluate research? Even if it’s published, there are strengths and limitations and real scientists are quick to point out that “this is what we know, but there are still some gaps in the literature.” You are quick to dismiss a scientific approach as simply “reductionist” (another typical alt-med argument used when things don’t agree with conjecture). So an RCT is no good when it doesn’t agree with your opinions or diagnoses, but RCTs are great when they do agree with your views? What’s it going to be?

          To be fair, whilst you might think I’m completely dismissive of the signs and symptoms of depression and anxiety (which you attribute to pyroluria), I do acknowledge that people are suffering from these maladies. And there are people who may start taking supplements and feel better. But is this cause and effect or coincidence? The human mind is immensely powerful and can convince us we’re healthy and well or very sick. The mere intention of improving and getting better can become a self-fulfilling prophecy. This is why having pyroluria research to control for extraneous variables is helpful to inform the debate and rule out other factors like changes in diet, exercise, etc. Sometimes people buy exercise gimmicks and gadgets on TV which pretty much have no real effect, but in the fine print they say “best results seen when used in conjunction with healthy diet and regular exercise.” Sure, people lose weight but is it because they were tricked into eating fewer calories and moving more? Was it just coincidence that they just happened to be using a useless ab-blaster gadget? So in the case of pyroluria, people are taking supplements with the intention of getting better and, on a side note, might start exercising again at the gym, taking the dog for long walks, being more social, eating more fruits and veggies. All these things improve depression. So were their improvements related to the supplements, the new healthy lifestyle, or a little bit of both? These are questions we cannot answer by just using your preferred method of N=1.

          On that note, I honestly don’t care if people want to take supplements in hopes that it’ll help. I hope they do feel better, whether it’s a real or imagined effect, the end result is the same. Provided there is no potential for harm, then who cares where they spend their money. But what happens down the road if the supplements really didn’t do anything and they fall off the lifestyle wagon? Maybe they’ll fall back into a funk again. You don’t tend to include these in your stats when they don’t agree with your philosophies. Point is, there are so many considerations that play a role in our mental and physical well being, and when you reduce everything down to a simple symptom-disorder approach like your B6 and zinc deficiency example, then you might actually be doing a disservice to someone who could, possibly, have something more serious like cancer or a physiological hormonal imbalance.

          I learned a long time ago that it’s important to keep an open mind, but not so open that your brain falls out.

          • Totally agree with you Bill. People always attribute “magical supplements” to curing ailments. Then you find out their previous diet was full of processed foods, highly stressful, taking a load of medications without having had a med review and the list goes on. When they finally change what they are doing, they feel better.

            Was that supplements or changing your lifestyle? Was that supplements or merely a placebo?

            Thats why we have science. Or else Dr’s around the globe would still be treating psyc patients with frontal lobotomies as they did in the past. Leaving people cured of schizophrenia, but also brain dead.

            I’ve never heard any Dr’s I work with diagnose Pyroluria and I work with 80 nurses daily and over 15-30 Dr’s weekly in medical based settings. I’ll take medicine over quackery any day.

  67. Ummm, Bill did you come across this list of research articles and updates on upcoming research on Walsh institute homepage???

    • Maria, Yes, I am familiar with that webpage, but if you spend the time to actually read the links on the page, you will also see that there really isn’t anything new to add to the pyroluria debate. There are powerpoint presentations, some abstracts, PDFs of MS-Word documents, and a dead link, but no independent research free of ties to the Walsh Institute (which, on Google Maps, looks like it’s housed in a strip mall).

      The study out of Griffith University is on young males with a history of violent behaviour (Oppositional Defiant Disorder) and is an open-label study aimed at providing power analysis data for a future placebo-controlled, double-blind study. I would like to see the same sort of study conducted on pyroluria.

      To be clear, and as I’ve said on multiple occasions in the comments, if and when we have more evidence on pyroluria that controls for confounding variables such that we can discern that results are due to treatment and not something like changes in the diet, exercise, medications etc, then I’d be happy to publish that research.

  68. Hi Bill, nature care advanced diploma is 3 yrs full time, 2 years entirely on biochem, anatomy/physiology, pharmacology and a year of clinic training in nutrition. I got enough marks to have done medicine at uni after school but it never interested me until my health went downhill and no doctors or pharma meds could help. This is when I got interested in nutrition. No symptom/disease scripts but a big focus on functional medicine, getting to the root cause and highly individual evidence based (yes! Evidence based treatment)- as you probably saw on my website. If you ever find yourself in Bondi, do give me a ring, we could have some interesting debates:)

  69. Dominic Pukallus on

    Bill,
    For more than 20 years I had suffered from crippling depression and anxiety which had wrecked my life. I saw a wonderful psychiatrist and psychiatric medication helped, but I was never willing to accept the side effects and I attempted many times to go without them with disastrous consequences.
    My new girlfriend used to work as a Mental Health Support Worker and she had come across many word-of-mouth stories from people who claimed to have benefited from treatment for Pyrrole Disorder AKA Pyroluria, a condition I had never heard of until then. She suggested I get myself tested.
    I conducted my own research into the matter and it was not promising, at least from an ‘official’ point of view. This very article was one of the most persuasive negative factors in the balance, at least to someone with no experience in this. What’s more, treatment involves vitamins and minerals, which to me didn’t sound like serious medicine at all.
    On the other hand, I did come across a large number of positive personal stories and I was wanted to convince my girlfriend that I was willing to leave no stone unturned in my search for any kind of relief, no matter how officially implausible. It was in this spirit that I agreed to see a medical doctor experienced in the treatment of Pyrrole Disorder and associated conditions.
    I was tested and found to have very high levels of Hydroxyhemopyrrolin-2-one, AKA ‘pyrroles’. I was prescribed the standard treatment of B6 and zinc (as well as other sundry supplements) and decided to actually follow it, despite the cost involved and my own personal reservations.
    2 weeks into treatment I realised I felt like I had awoken from a nightmare. My symptoms of depression and anxiety have melted away to the point where, 10 weeks into treatment, I have weaned myself off the last of my psychiatric medications for 16 days while still feeling better than I could have ever hoped. I would consider myself a success story.
    Considering that the doctor who treated me is trained in the methods developed by the Walsh Institute, I am somewhat biased in favour of their theories. As someone with little training in chemistry I do not feel qualified to comment on the accuracy of their science or their research, except to say that it has worked dramatically in my case. It is in this spirit that I maintain that should there be funding allocated to the proper examination and testing of their theories, there is a very high chance that they will be found to be correct.
    The problem is that such funds seem to be lacking. Considering my own reservations that I had prior to my personal experience, I am not terribly surprised. I think the most fundamental drawback is that there’s simply no money in it, due to the lack of any drug to patent and market, and a general perception that it just can’t be serious medicine.
    There is the possibility, apart from the fact that I may be lying or delusional, that my case is somewhat unique. I’ve even been told it’s just a wildly successful placebo effect. Given the number of personal stories of transformation I have since come across from many of the 2,400+ members of the Australian Facebook support group I am a member of, I don’t think so.
    Yours,
    Dominic Pukallus

    • Hi Dominic, so great to hear you are well now. I am struggling myself with crippling anxiety and depression and am on day 4 of my pyroluria treatment. It is hard to keep going as I have no idea if it will work. Did it really just lift one day? Michelle

  70. I think this 2015 study undertaken at the University of Adelaide/Queen Elizabeth Hospital might go some way to showing a relationship between HPL elevation (they’re pyrroles right?) and schizophrenia symptoms. It looks to be quite complicated, and I don’t pretend to understand all of the terminology, but they seem to have found that HPL elevation was one of the several biomarkers for schizophrenia. They discuss the role of free copper, oxidative stress, low zinc, B6 etc in causing various strife in the brain, and more specifically, in chronic HPA axis activation and adrenal stress. In their discussion of the mechanisms by which HPL elevation might contribute to schizophrenia, it sounds very much like it could lead to many other mental health issues. Of course they don’t mention Pyroluria, but going from what I’ve read in the comments, that would be a very bad career move. The subjects in the study had the free copper-zinc ratio and low B6 that is thought to be central to pyrrole disorder. It would be nice to see many more studies like this, of course, HPL might be only one of the biomarkers of what we think of as Pyroluria. I wouldn’t be surprised, if elevated HPL was only one of the biomarkers of what we now think of as Pyroluria. http://www.biomedcentral.com/content/pdf/S40364-015-0028-1.pdf In case I’ve typed that in incorrectly, the study is Fryer Williams and Strobel (2015) ‘Biomarkers of a five-domain translational substrate for schizophrenia and schizoaffective psychosis’, Biomarker Research, Vol 3(3)

  71. Hey Dr. Sukala,
    I just lost my original message to you in trying to send it but I wanted to know what your thoughts were on the claim that kyrptopyrrole is actually a misnomer, and on further research it was seen that it was another metabolite in heme synthesis which I’ve heard many-a-time, even I believe by the Walsh Institute. This gentleman on vitalityandwellness.com.au/pyroluria has a video on this webpage explaining this. Just wonder what you’d think about it. Thank you 🙂

  72. Fascinating discussion!

    I got interested in this area when two friends got CFS nad I started to do research into methylation cycles and B vitamins, to see if there was any evidence for them helping. I’m not a biologist or biochemist so in that area I’m out of my depth, but I was a physicist.

    This then led onto looking into pyroluria and ‘adrenal fatigue’ (which I can’t even write without quoting). From my research I too don’t believe pyroluria is a condition. However I do think kryptopyrroles may be a useful marker for high copper, low zinc or low B6 (needs validation, but if so is a lot cheaper than blood testing). I’ve seen enough anecdotal evidence that some people are benefitting from extra zinc & B6 to conclude it has some positive effect; but why or anything more concrete cannot be claimed.

    Give it another 50 years and we may know more 🙂

    • Hi Peter,
      Thank you for your comment. I think you make some good points and I agree that we still have a way to go until we can establish any mechanistic cause/effect relationship. As of now, it’s still a lot of theories and anecdotes. Cheers

    • Dominic Pukallus on

      Hi Peter,
      The thing about Pyroluria (researchers these days perfer the term ‘Pyrrole Disorder’) is that the proponents have been claiming all along that it is precisely what you have said, a chronic severe B6 and zinc deficiency associated with high copper (due to the zinc/copper balance being out of whack). Whether the high Hydroxyhemopyrrolin-2-one (kryptopyrrole is a misnomer for the substance) is the cause of this or just a marker is still a bone of contention, no matter what you read on the less scientifically rigorous websites. I’m of the belief that should there be more independent research conducted on this we would know for sure. Then again, I benefited from B6 and zinc supplementation after being diagnosed so I have my own bias on the matter.

  73. Richard Noonan on

    Carl C. Pfeiffer, Ph.D, M.D covers this in his book called Nutrition and Mental Illness. Even he states that not all schizophrenics have pyroluria but around 30% do. At around $75, in Australia, for a urine test it is not an expensive assessment. Not everyone will get schizophrenia with it so people suffer to varying degrees. This has more to do with a build up of copper which effects women more because of oestrogen. Pfeiffer recommends Vitamin B6 enough for dream recall. Zinc gluconate 30mg morning and night. Manganese gluconate 10 morning and night. B6 may cause numbness of fingers and toes but can be replaced by pyrioxal phosphate at a 10th the dose of B6.

    As a metabolic issue is no cure these dosages are on going.

  74. What a closed-minded physician you are. You sound like the type of skeptic who would have said that germs weren’t carried on doctors hands and they didn’t have to wash them before helping with childbirth. It’s sad how much time it takes for the general medical profession to catch up to current information available. What bothers me is that you sound arrogant, not informational. Please keep an open mind. Our very unhealthy society needs open-minded professionals who are open to new ideas. Now, go wash your hands.

    • Dear Sue,
      Thank you for taking the time to leave a comment. Your inflammatory tone gives me the impression that you already have your mind made up on the topic, so I’m not sure why you left a comment. Did you have something to contribute to the discussion other than name-calling? So because people asking for peer-reviewed research to substantiate Walsh’s theories about pyroluria and its treatment, does that make them closed-minded in your opinion? Have you had an opportunity to read all the comments? I don’t care if people take supplements. I’m just shining light on the fact that there really isn’t any conclusive body of evidence to support it. Also note, like Bill Walsh, I also hold a PhD, not an MD so am therefore not a “physician.” Here is a link to an article you might find interesting: http://ngm.nationalgeographic.com/2015/03/science-doubters/achenbach-text Kind regards

  75. Sarah Hortsch on

    I’ve been browsing through these discussions – very interesting. I am a nurse, and finishing my PhD and I am the first to cry quackary, as my daughter will attest. She is 19 and has been suffering for the last 4 plus years from depression, ongoing hypothyroid issues she began at age 10, etc. That is putting it in a very simplified manner. My husband teaches in the local medical school, etc. We tried everything – went through all of the endocrinologists, psychotherapists, etc. I myself am a psychiatric nurse. Finally, my daughter put on the brakes and refused to continue with our regimes. She sought our an alternative practice MD (a real MD who got his degree from our medical school which is world reknown, and I met with him to make sure he was indeed not a quack. I was quite impressed. He also had a medical student observing during that initial 3 hour intake interview ). There had been no improvement over 4 years for my daughter. Over the last several months of seeing him, it has been a steady improvement and almost exponential since he diagnosed pyrrole disorder and began supplements. In fact, I don’t know what to make of this. I would say that for the first time, since my daughter was age 3, she is normally vibrant, happy, and healthy. She herself took it upon herself to begin eating well a year ago, changing her entire lifestyle physically. But this current change in taking supplement for pyrrole disorder has been the most dramatic change I have ever witnessed in her. I don’t know what to make of it. I don’t believe it is a placebo effect. She is almost a different person. She had the symptoms of pale/china skin, irritability, quick to anger, extreme sensitivity to smells, tastes, sounds, mood lability. She actually spend xmas out and about with all of us, enjoying being with the family. And she said she enjoyed it. She is completely different. I don’t know what to make of this. It has been a change that has occurred over the 2 months she has started the supplements but most strongly over the past month. I would appreciate your thoughts. Remember, I am a strong skeptic! And I am completely caught off guard by these changes. This has been the only “treatment” in over 10 years that has helped her feel “happy”.

    • Hi Sarah,
      Thank you for your comment and for maintaining a civil tone. Also thank you for sharing your daughter’s story. It is precisely the reason why properly conducted research studies would be valuable to inform the pyroluria debate. I think it’s wonderful your daughter is feeling better. I’ve been through some extremely dark days myself and can certainly empathise that depression is no fun ride for those that suffer from it. I would be most grateful if you could keep everyone informed about her progress as things transpire. What I’m curious to know is if the benefits that people find once they start the supplements are sustained and lasting over the course of a year, three years, or even five years and beyond. There are still many unanswered questions around pyroluria and it would be valuable to have a modern research base using strong scientific methods, robust outcome measures, and the most sensitive assays available to detect small changes. Thanks again for your comment. Warm regards, Bill

  76. I am replying to Joshua’s post about kryptopyrrole being a misnomer as his post was not addressed properly. Indeed it is. Donald Irvine (Clin Chem. 1978 Nov;24(11):2069-70) compares the chemical structure of kryptopyrrole and of the correct compound, hydroxyhemopyrrolenone (2-HPL) in Figure 1. The biggest difference is that there is a ketonic oxygen in the latter structure (2-HPL). The reason that the compound is sometimes called the Mauve factor is because an aldehyde called Ehrlich’s reagent reacts with the urinary compound associate with pyroluria and turns it a mauve color. Because the kryptopyrrole structure does not have a similar oxygen, it cannot react with Ehrlich’s reagent. The same is true for activated B6, which is a type of aldehyde. Activated B6 can chemically react with 2-HPL, but not kryptopyrrole. The latter is easier to pronounce and remember, so the incorrect name seems to have stuck in the minds of those not very familiar with the pyroluria or chemical medical literature. No matter the name, the urine test that is done identifies the correct compound, 2-HPL, because Ehrlich’s reagent is used in the laboratory assay and will only react with the correct compound.

    I should also mention that Donald Irvine mentions that 2-HPL has a chemical structure very similar to one end of urobilinogen, which is made in the gut and transferred back to the individual in bile and is also used in heme synthesis. So there may be a gut-microbiome connection for this disorder.

  77. I for one wish to thank you Doctor Bill for taking the time and effort to dispel this mythical illness. I appreciate your informative and valuable article.

  78. Interesting debate here. I haven’t read all the comments in detail but thought I would provide insight into another condition that is under-diagnosed that has many of the symptoms noted for pyroluria. I realize there may be many more. I have been diagnosed with hyperadrenergic orthostatic intolerance (or POTS) on account of hypermobility (connective tissue disorder). My adrenaline symptoms are incredibly similar to what is reported here. I wonder now about the relationship between B6, zinc and adrenaline function? Interesting!

  79. My son suffered from severe anxiety from the age of 11. He has been diagnosed with pyroluria 4 years ago. Within a month of starting to take the supplements he has shown a vast improvement and witin three months the boy who was barely able to function became his happy, confident former self again. He was seeing a psychologist at the time and this lady – with 30 years experience – who only two months before told me that we have a very long road ahead of us, said rhat she has never seen such improvement before. At the end of the day my son did not need anti depressants and therapy. His body just needed nutrients. I am forever grateful that I was desperate enough to take the advice of a friend – even though I was very sceptical at the time- to investigate the possibility of pyroluria.

    • Hi Juanita, thank you for taking the time to share your story. I am happy to hear that you’ve had positive results. It would be helpful if you could stop back to this post in 6 and 12 months and let us know how your son is going. As there are no long-term studies on pyroluria, it would be interesting to have commenters report back on whether or not the results were sustained. I would like to see independent research on pyroluria that answers the question of short versus long-term relief. As others have commented, because B6 and zinc deficiency occur in the presence of pyrroles in the urine does not necessarily confirm a cause and effect relationship. Studies which provide a mechanistic explanation for any improvements would be helpful as well. Kind regards, Bill

    • Hi Juanita – i have recently been diagnosed Id love to private message you about it if that would be ok. SO great that your son is well now, Michelle

  80. Where are all the negative reviews who cares about science on

    Where are all the bad reports that people refer to I haven’t read one if this was ineffective why is there not a thousand people saying I was diagnosed with this did treatment and it didn’t work. I’ve only read one above and that was from me last year.

  81. Hi Dr Bill!
    First I wanted to say Thankyou for providing both a measured alternative viewpoint to most sites that come up when googling pyroles, and also a forum for a very long discussion!! I was impressed by your responses and restraint 🙂
    It has been suggested to me that this condition may apply to me, hence the interest. The lack of solid proven research does worry me a lot, and put me off the whole thing somewhat. However, I have had some great success in treating other conditions, for example IBS with the help of a great naturopath, when all other medical options had failed. I recently saw another gastroenterologist, when I told him what I’d done with her, he laughed and dismissed it, and yet, in eight years of extreme discomfort, with countless tests and diet programs, she’s the one who fixed me!
    So whilst I think science is fab, I’m also open minded to other options that are not looked on favourably by traditional medicine.
    I’m not sure if I’ll pursue testing or not, but I probably will. I know circumstantial evidence isn’t proof, but there does seem to be more people who’ve commented that it has helped them than not, which I do think is interesting. You would think if it was total quackery there would be heaps more people happy to shout it from the rooftops…maybe they just don’t research pyroles anymore!!
    Aaanyway, just wanted to say thanks for the info, and I hope everyone finds an answer or the relief they seek.

  82. There would appear to be enough anecdotal evidence so as not to discount it out of hand. I know from my wife’s experience that, unfortunately, it is desperation that drives people to these fringe treatments. I guess everyone needs to make up their own minds as to whether they want to wait for the double-blind peer reviews or try something (anything) in the hope that it makes a difference.

    I hope all those suffering find some relief somehow.

  83. Possible Pyroluric on

    Great article.
    It’s sad that people’s pain can result in some of the condemning responses you received. I admire your patience and diplomacy – I couldn’t do it. Think you’re doing a great job in pushing this subject forward – thanks.

  84. I appreciated reading your questions and your point of view. It reminded me of me when I was just learning about pyroluria. The most difficult concept for me to grasp about pyroluria is how it has so many intricate parts and how it’s not an entity in itself but part of a bigger system imbalance. That said, your article caused me some confusion in ethics as I wondered why a doctor would try to influence millions of people against a disorder that he knows so little about. This choice strikes me as unprofessional. Many of us have been diagnosed and are doing well on treatment for undermethylation and pyroluria. I also question why a doctor would be looking for others to research studies instead of looking himself. I spent years researching and I’m a music teacher. Surely if I were getting paid for it, I’d find the motivation. These were red flags for me in your article and comments. That said, a large potion of the pyroluria puzzle was ignored; copper. There is a tremendous amount of information and study on high copper, pyroluria, and low zinc. Perhaps getting in touch Dr Walsh can help you understand better. He has years of experience and a tremendous amount of research done. No one in their educated mind will tell you that pyroluria is the final solution to their health issue as the body is a series of checks and balances. But it’s the first step in ridding the body of metal that is detrimental to its function and in rebalancing what stress, environment, and genetics has dismantled. Try not to turn people who look up to you away from what may ultimately save them because of skepticism. Instead, open the door and your mind to possibility and engage in research first. I hope that my honesty is welcome.

    • Dear Terri,
      First, thank you for maintaining a civil tone in your comment. There have been far too many hot heads posting in this forum whereby emotions got the better of reason and people started throwing daggers. I won’t write a long response here because I have addressed similar concerns to yours numerous times in other responses to other commenters. I would suggest taking the time to read the other comments from top to bottom and paying particular attention to those made by Dr Simon Easterbrook-Smith who is immensely knowledgeable in the area of biochemistry and has also expressed his own concerns in this forum. I am genuinely pleased that you’ve found something that is offering you some respite from whatever your ailment may be. Warm regards, Bill

  85. You label some people as ‘hotheads’ for their objections to your article. Yet your title calls pyrolura a “myth” and more…You write: “Before you break out your credit card in paralysing fear and start buying expensive online tests and supplements, you need to arm yourself with the facts”…

    I will echo the same as many others here…It is a shame that you have to take all of your, as you put it, scientific training, to go after and pick apart something like pyrolura. Whether it is always described exactly perfectly or even understood completely – there is merit in the inexpensive supplements for those that have distressing symptoms that fit the description and who find relief. Besides WHO said it was the “holy grail”!? It is actually not well known to those that should know about it. The profound anxiety and inner tension that can make a child’s (or adolescent’s) school and social life or a adult’s career life limiting and discouraging can sometimes seem miraculous when relieved so simply.
    Oh, and exactly would be willing to pay for your “scientific testing”? No one, because there is nothing to patent. Now if there could be some $$ made out of these supplements, by tweeking a molecule or two and mixing in some inert substances and then getting that patent…yes, they could then prove it …I just think it is very sad that people like your one commenter look down their noses giving reasons that working with a bunch of doctors and nurses gives them authority over the subject of nutritional and alternative medicine- something they have actually mostly been trained to discount and ignore…

    • Hi Kat,
      Thank you for leaving a comment. I can empathise with your frustration and I do understand the need for treatments for depression and anxiety. I have personally dealt with both at different times in my life under immense stress, so I am not insensitive to the suffering people experience. I also do not advocate plopping people on meds, so please do not paint me as a big pharma shill (I’ll throw eggs at their headquarters side by side with you!).

      I know you are convinced down to every last cell of your body that this combination of supplements can cure pyroluria and consequently improve depression and anxiety symptoms. But my question is, how do you actually KNOW that the results are due to the supplements and not mind over matter? I genuinely believe that you believe what you believe and that’s not in question, but do you have any independent evidence that can corroborate the supplement-cure link?

      I think you might find this SBS article fascinating with a couple of the key points highlighted below. Also check out the video clips contained in the article. Your IP address puts you around Palm Desert, CA but I think the videos are on Youtube so you should be able to view them.

      From the article:
      Over the past few years, research has shown placebos can have a positive effect in the treatment of depression. One study showed in some instances, there is little difference between the effects of placebos and active medication when given to people with mild to moderate depression and accompanied by supportive care. In another, 30 to 50 per cent of responses to antidepressants could be attributed to the placebo effect.

      The article goes on to point out that expectancy is key. An individual’s INTENTION to improve is immensely powerful. Having said that, the existing body of evidence does not support pyroluria as a clinical entity, but I have absolutely zero doubt in my mind that people believe they’ve improved on the supplements. Maybe pyroluria had nothing to do with it? Maybe they simply had a vitamin deficiency, or maybe not. Maybe the intention of getting better after so long of feeling down in the dumps is enough motivation to finally say in the back of the mind “THIS IS GOING TO WORK!” And with such an expectation, it can “work” even if the ingredients were inert or elicited no demonstrable physiological changes in the body.

      Finally, when it comes to the argument of science over personal anecdote, I like to mention the following quote by Yale professor and neuroscientist Steven Novella:
      “What do you think science is? There’s nothing magical about science. It is simply a systematic way for carefully and thoroughly observing nature and using consistent logic to evaluate results. Which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic?”

      Kind regards,
      Bill

  86. Dr Bill,

    I understand your need to want scientific evidence and more research regarding Pyrrole disorder. I was diagnosed with Pyrrole disorder in mid 2014 after crashing with adrenal fatigue in the beginning of 2014 and despite recovering well I would always drop in my blood metal minerals so quickly. All my life I have dropped quickly in iron and I would ask my local GP about this and he said it was just because I was female. I found that a very inadequate answer because if that was the case then it should happen to other females. Anyway I value research and intelligent reflective thinking as evidenced by obtaining 2 bachelor degrees and a Master degree. Although not in the medical field I am a naturally analytical thinker and researcher. When first told about the Pyrrole disorder by my wholistic GP specialist who so far had helped me and my mother more than any other doctor had been able to I then thought he was a quack. I was still going to him hesitantly and waiting for a “catch” to prove he was just after money or advocating some healthy hippy alternatives that were not based in science but so far everything made sense as he took time to explain and then I would apply it and my health would improve. However my limited reading after this consult I thought this is not substantive. Since that time and multiple hours on the internet researching and grasping for any possible research about this disorder and nearly two years of taking nutritional supplements for this disorder. It is clear by my physiological journey and responses backed up by blood test results that I am a “text book” case of someone with Pyrrole Disorder. I am seeing my doctor today because my B6 result has dropped from 150 to 80 in three months because the P5P was taken out of my pyrrole formula. When I don’t take Zinc it drops immediately within weeks and months and my hair starts falling out. I do not have a mental disorder I am a highly capable, high capacity and functioning adult however abnormal levels of anxiety have accompanied me on that journey. When I started taking the Pyrrole nutritional supplements my closest friends noticed that I was calmer and more at peace and not as anxious. It probably has taken me until today as I go to see my Dr about my latest result to fully embrace the fact that I have two “real” blood disorders Pyrrole and MTHFR homozygous C6777T. Until today I have been applying what I have been told sceptically and half obediently wondering if this has been made up. The intelligent scientific side of me would love the academy to get funding to fully research this disorder again so that people like me would be able to apply what they have been told with confidence, it could have saved me a less confusing and tiresome journey over the past two years. It would be great if you could write an updated article about Pyrrole with what you have learnt about it since first writing this article and perhaps change the language of myth, for people who suffer in “real” time with this disorder that word is very disheartening. Kind regards Tina

    • Dear Tina,
      I was able to rescue your comment from spam purgatory. Not sure why it ended up there in the first place.

      Thank you for taking the time to write a long and thoughtful comment. I have actually considered updating the article a bit, taking on board some of the more interesting and constructive comments that have accrued along the way. Stay tuned.

      Kind regards,
      Bill

      • Hi Dr Bill,

        Thank you 🙂 I have just returned from my Dr and explained to him I had not really believed what he was telling me so was only half applying what he said. I was surprised to hear him agree with me and say he understood. He explained that he didn’t initially believe it either but after from what I am assuming at least 10 years of applying treatment in his practice the results are tangible. He said the treatment has three key elements 1. High nutritious diet 2. Reframing thought patterns and behaviour 3. Nutritional supplementation. All three affect each other synergetically so it is important to treat all three. If you just deal with the psychological side it doesn’t have a huge impact because the brain biochemistry is not there (serotonin and dopamine lacking due to low levels of vitamin B) to stay calm and happy no matter how determined an individual is. He had just seen a 7 year old girl that morning who had improved exponentially after a few months of treatment at all three levels. My experience has been no matter how “positive” and determined I have been without correct nutritional supplementation I have not improved. He also said in a compassionate and non antagonistic way that he would love the medical academy to do more research to help doctors and people. Your influence would be invaluable and very appreciated in helping this happen.

        Kind regards,

        Tina

    • Hi Tina,
      This comment came through ok. I approve comments in order to weed out trolls. For the record, I still approve 99% of comments even if I don’t agree with the author. Cheers

      • Ok cool do you know where my original comment is I think you will find it interesting 🙂 maybe it didn’t post it was quite long?

  87. Wow… I read the article and maybe half the comments and I just don’t know what to believe. I actually just read about this for the very first time about 30 minutes ago. The first article I read nearly had me in tears, not from fear, but from reading about myself and others in my family. I don’t know if this is real or not, but I know my symptoms are very real and cause havoc in my life. I also know that I no longer trust most so called “doctors” and here’s why… I was diagnosed with a disease nearly 30 years ago called ankylosing spondylitis. I was diagnosed by x-rays and positive for the HLA-B27 gene marker. Every doctor I go to wants to do the blood test. The last so called specialist did as well because some blood tests came back positive and some negative. LOL, that is not possible though because it’s a gene marker, a person is born with it, you do not develop it, catch it, or get rid of it. Well, this doctor sends my blood work in, gets a positive back for the HLA-B27 and then promptly diagnosis me with osteoarthritis which told me he was a quack. Here’s why… 15 years ago I was pregnant with my now 14 year old daughter. I was actually scared because instead of gaining weight I was losing weight. I felt better than I had in years. No pain, the stiffness was gone, lots of energy, no problems sleeping. Within 6 months after her birth I was back to all the pain, stiffness,lack of energy,and loss of sleep. The one good doctor I had in years decided to investigate and found out that sometimes Ankylosing Spondylitis goes into remission when a woman is pregnant with a female fetus. Osteoarthritis does not do that.

    Second reason I no longer trust most doctors… I watched my mother die a horrific death at the age of 65 due to toxicity of a medication she was on. She was supposed to have been monitored with this medication but apparently wasn’t because she had been toxic for a very long time and by the time we found out it was too late. It took her 4 months to die and all along they kept saying that she only needed rehabilitation and would be able to come home and then one morning her heart just stopped. Medication killed my mother while all the doctors in their comfy offices twiddled their fingers in confusion.

    So no, I don’t trust doctors and if I did find one I could trust I’m sure it would take a very long time for him or her to earn that trust.

    As for the reason for this comment, I read a couple articles on Pyroluria and I have no clue if the diagnosis itself is real. But then again taking cranberry juice to help with UTI was considered a wives tale when I was a child yet my grandmother insisted on my taking it. Can you guess what doctors now know about UTI and cranberries? That’s right, it turned out to true. All I know is that what I’ve read was like reading my life story and I will look into it. I don’t think anyone should say something is a myth just because there are no “scientific studies” to back it up. Because we don’t know something doesn’t mean it doesn’t exist. It only means that scientific studies will be put on hold unless lots of money can be made by big pharma. I don’t trust the docs and I don’t trust big pharma. I do trust results though and those are the only studies I need. So if works I’ll be extremely grateful. If it doesn’t, well then, I tried.

    Sorry, I didn’t finish. I need to say that I’m told I can be very blunt. I mean no disrespect towards anyone for their opinion and being blunt is just one of my quirks that unfortunately follows me in every place and every situation. I have severe ADHD with Aspergers traits and don’t mean to come off the way I sound at times. Knowing doesn’t really help me though so I wanted to explain so you wouldn’t think I was blowing steam at you. I do think that using the word myth in regards to this particular issue is a wrong choice of words though. Because something hasn’t been proved by science doesn’t mean it’s not real.

  88. Hi
    I just have a couple of points to make about your article.
    The papers you refer to are about disproving the pyrolle/schizophenia relationship but they don’t actually disprove the existence of the condition nor other potential side effects.
    I would suggest that referring to those papers as sufficient evidence to warrant calling the condition a ‘myth’ is pretty flimsy – by all means say you do not agree based on gut instinct, suspicion of the motives of practitioners or whatever but to suggest it has been proven to be a myth because of the unproven pyrolle/schizophrenia relationship is I think misleading, I would be pleased to see some papers disproving any relationship between pryolles and some of the other conditions it is said to be related to if you were able to link to some of those too.
    Our son was diagnosed with this condition (and there was no suggestion by anyone that he has or is likely to develop schizophrenia) and those tests were run through Melbourne Pathology which seems to be a credible pathology facility…perhaps if you were to contact some of the GP’s, who you would presumably find more credible, who treat this condition and enquire about their training/evidence you might have a more solid foundation for your position.
    rgds
    Donna

  89. Hello, I agree with you on some points, but I strongly disagree with you on others. I’m a very science oriented person, and I’m grounded in logic and scientific studies. I actually searched for “science pyroluria” and this was the first thing that came up. I was left pretty disappointed.

    1. Just because pyroluria wasn’t found to be linked to schizophrenia does not mean it isn’t real.

    2. Just because there hasn’t been a study yet doesn’t mean it isn’t real.

    3. You must actually systemically study this to figure out if it exists or not. You have to prove that pyrroles do not bind to b6 and zinc in appreciable amounts, in any person. To not do so, is anti-science. Just claims made of air.

    Calling this a myth is disgusting in my opinion. There are thousands of theories for the pathologies of MS, Alzheimer’s etc. These theories have logical reasoning, but no studies done, either because the things talked about are not able to be tested (viral infection, intracellular nutrient disorders etc), or because of lack of interest/funding.

    You should at least acknowledge that you have no proof that it does not exist. You only have proof that the schizophrenia link was bunk.

    • People make all the same arguments in support of homeopathy. The burden is on the proponent of an implausible theory (that some genetic condition unable to be defined accounts for a weird array of disconnected symptoms), not the other way around. And yeah, it’s significant that the schizophrenia connection is nonsense, because that is the very origin of the whole theory. So Hoffer just happened to be wrong about that one, but his other observations are somehow valid?

  90. A nice cuppa from Russell’s teapot and you will all be cured. It amazes me how people can have their lives revolve around first world problems and blatantly exploitive utter nonsense pseudoscience that they try to foist on others. Get a life, do something useful with your time on Earth.

    • The caffeine in the tea and the ergot derivatives due to the pyroluia cobdition I have will cause my condition to worsen and I will be left fatigued and therefore unable to get on as effectively with doing something useful on the earth… like helping “third world” countries because my “first world” problem is a problem a real problem. I will let the pathology labs know that their blood testing is “pseudoscience” and on your advice ignore the dramatic drop in B6 and zinc levels within 3 months of stopping nutritional supplementation for pyrolyuia because according to you this is inadequate scientific evidence for pyrolyuia. Thankyou for your care and concern.

  91. So even if someone has acute intermittant porphyria, they still can’t have an excess of pyroles??? If yes you need to include that in your article!!

  92. just because it cannot be cured by a pharma drug does not mean this isn’t real. nutrient deficiencies are real and this is something you cannot be cured from however as its a metabolic problem and the person needs to supplement forever or symptoms come back that means its areal thing. in the last few weeks i have identified greatly with this for myself and my out of control child that my dr wanted to put on add/adhd drugs. of course i said no and will be seeing my practitioner this week about testing us both.
    for you to say this condition is a myth is a joke, i read that as oh i cant prescribe a drug so its not areal thing. not everyone needs a drug but everyone needs good nutrition.

  93. I can only comment by anecdotal experience. 6 years ago I felt I was going mad I had some psychology visits and also found a holistic GP practice in rosebud, Victoria. I gave a urine sample to pathology which showed excessive pyroles in my urine and was prescribed zinc and vit b6. I was at the Dr in desperation and did not want to be on anti anxiety medication. I had been through some major stress and tried to blame hormones for my anxiety, nervousness and agitation. Within 3 weeks, I was amazed. I am a new person and only have my GP to thank. I believe if I went to mainstream medicine I would have been put on medications. I have researched pyroluria and I believe this it what I have.

  94. These types of posts inevitably bring out anecdotes to the effect of, but it cured me!! I can find testimonials on the web to virtually every treatment that has ever been offered, no matter how implausible. But it’s funny how so many of these things never hold up in placebo-controlled studies. Sham acupuncture works just as well as real. Sham neurofeedback works just as well as real. Sugar pills work just as well as SSRIs. People swear by stuff as absolutely goofy as Matrix Energetics. What we need here, then, are studies, and since Pfeiffer et al never did any real scientific ones, what we then have to go on is plausibility. And to me, it just is not plausible that one alleged condition could CAUSE so many disparate manifestations and symptoms. Correlation, remember, is not causation. I remain very very skeptical. The good news I suppose is that it’s cheap and safe enough to try a protocol.

  95. None of the people who just repeat the gospel on their websites ever seem to mention these studies which could not replicate Hoffer’s findings.

    ^Cruz, R; Vogel, WH (1978). “Pyroluria: a poor marker in chronic schizophrenia”. The American Journal of Psychiatry135 (10): 1239–40. PMID696910.

    ^Gendler, PL; Duhan, HA; Rapoport, H (1978). “Hemopyrrole and kryptopyrrole are absent from the urine of schizophrenics and normal persons”. Clinical Chemistry24 (2): 230–3. PMID627053.

    ^Jacobson, SJ; Rapoport, H; Ellman, GL (1975). “The nonoccurrence of hemo- and kryptopyrrole in urine of schizophrenics”. Biological Psychiatry10 (1): 91–3. PMID1120177.

    ^Gorchein, A (1980). “Urine concentration of 3-ethyl-5-hydroxy-4,5-dimethyl-delta 3-pyrrolin-2-one (‘mauve factor’) is not causally related to schizophrenia or to acute intermittent porphyria”. Clinical science (London, England : 1979)58 (6): 469–76. PMID7428279.

    Inconvenient to have evidence debunking your myth I guess.

  96. Hi Bill,

    I’m really interested in this discussion. Two things strike me from the comments:

    1) Whilst understanding the scientific limits of anecdotal evidence, it seems incredible that there has been only one person posting that this diagnosis and treatment hasn’t helped them.

    2) A post some while back pointing out that whether or not pyroluria is a medical condition, people report that zinc and B6 supplements help with stress.

    I came across your site whilst looking for more information on this second point. Last December I was suffering from a bout of “stress”, anxiety and depression that has been a moderately debilitating experience since childhood and which affects other members of my family. In frustration I typed all the things I could describe about my “fuzzy” mental state into Google and someone’s blog came up mentioning pyroluria and zinc/b6 deficiency. I’d tried CBT in the past and found a little benefit in that along with various other self-help/mood books and yoga, meditation, to help me stay calm, but whilst helping me to manage my mood better, nothing really tackled what I could describe as an underlying lack of mental/emotional resilience. The exception was SSRI’s which I tried for a month, did help me feel more resilient, but I didn’t want the side effects.

    Looking at the cost of pyroluria testing and not finding a practitioner in my area, I decided to just try the supplements to see if it would do anything. On starting to take a Zinc/B6/Magnesium supplement I noticed a positive change within a few days which is still here six months later. The effect is comparable to the SSRI’s – I am better able to handle stress, feel much less anxious, need less sleep, wake up feeling alert and positive, able to be more confident and assertive.

    Without the information I found about pyroluria, whether “real” or not, I would not have benefited from these positive changes. I feel like a different person.

    However, the reason I ended up on your site was that having experienced these benefits for six months, I still find I am prone to depression (but not anxiety) during periods of genuine external stress, and so wanted to do some more research about what the actual cause of the resilience problem could be, why the mineral supplements help and whether I can fine-tune them further. In (subjective) honesty I’d guess I’ve had a 50% improvement so far, but my sense is that fluctuating stress levels may call for varying mineral doses and I’m not sure how to proceed.

    In particular I wondered if having successfully trialled the zinc/b6 treatment, I should get a urine or blood test to get a diagnosis and a more measurement-based recommendation. That would be more “scientific”, I thought, but your article initially somewhat undermined that course of action. I’m not sure what to do, but having seen the benefits first hand it would be foolish to abandon what I’m doing because something called pyroluria might not be a real thing.

    The lady posted about her three children and the regular testing and adjustment of supplements – this regime sounds very effective. Can anyone in the UK help me to get started with this sort of approach? And could we all at least agree (just from the wealth of reports here) that there appear to be debilitating mental/behavioural conditions that can be relieved effectively with mineral supplements using measurement-based techniques even if the underlying theory remains to be proved?

    Thanks and best wishes

    • Hi Derek,
      Thank you for taking the time to leave a comment and for your kind words. Much of the pyroluria debate has devolved into a Trump-style dog fight of bullying and name calling. I am no longer approving abusive comments (which most of them are) since they do not contribute anything new or insightful to the discussion. In responding to critics, I found myself repeating the same things over and over which showed me that they 1) did not read the article in its entirety; 2) did not read all the comments before responding; and 3) had their minds made up on pyroluria before even clicking on the article. In some comments, pro-pyroluria supporters cite research which actually refutes pyroluria or quote references that have nothing to do with pyroluria as a condition. This tells me that they are just taking someone else’s word for it rather than actually doing their due diligence and engaging in critical analysis. To each their own I suppose. Have a great day, Cheers, Bill

  97. I don’t know if I am allowed to post a link, but on a site called balancing brain chemistry a British clinician named Peter Smith does an excellent job explaining why he does not buy into pyroluria and the associated supposed histamine disorders. Also if you google absolute basophils histamine Riordan you will find an article, by the founder of a leading lab that does test for pyroluria, Dr. Riordan, which says that he found NO correlation between absolute basophils and whole blood histamine. The supposed correlation between these two is one of the central tenets of the Walsh crowd who believe in these supposed histamine disorders and is touted on many a website.

    • Thanks Peter, this has been a recurring theme in the pyroluria debate. Selective acknowledgement of anything that supports pyroluria and denial of all that refutes it. As I said in a previous comment, many readers have already convinced themselves they have pyroluria and no amount of evidence will sway that view. Many call for skeptics to prove pyroluria does not exist, but the onus is actually on its promoters to prove that it does. Thanks again for your contribution. Cheers, Bill

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