Pyrrole Disorder For Therapists
Caryn Talty & Matthew Dahlitz
DOI: 10.12744/tnpt(3)058-066
Moody. That’s the word loved ones, friends, and co-workers usually use to describe the person in their life suffering from untreated pyrrole disorder. Everyone walks on eggshells whenever this person is around. No one ever knows what’s going to set them off. Like a time bomb ticking away, stress continually builds inside the pyroluric’s body until a full-blown eruption occurs. Then the damage is done. Bridges are burned, feelings hurt, and grudges formed. It’s not uncommon to see patterns of relationship issues with pyroluric patients, both adult and adolescent…
Often, the person with untreated pyrrole disorder arrives at your clinic with obvious coping issues. Although they can also suffer from debilitating depression, they don’t always present with obvious symptoms. What they do all have in common is an inability to handle stress without “blowing a gasket”. There is an inner tension that these clients attempt to tame, often quite unsuccessfully. Without warning there can be fluctuations in mood and behaviour. The sufferer may blame others, be quick to argue, and deny charges laid against them by family members.
A sudden move, a change of jobs, the death of loved one, or divorce in the family can create elevated stress levels which worsen the biochemical imbalance caused by pyrrole disorder. This is true for both diagnosed and undiagnosed sufferers. This is why it is important for therapists to recognise the possible symptoms of pyrrole disorder in the clients that they see. It’s also important when dealing with those currently being treated for pyrrole disorder. But often, therapists are the first line of defence for clients with pyroluria. When you recognise the signs and symptoms of this biochemical imbalance, you can help initiate a quicker resolution in your clients.
What is pyrrole disorder?
Pyroluria, or pyrrole disorder, is a condition caused by stress that depletes the body of certain vitamins and minerals before they are able to be absorbed.
In short, there are three main nutrients that are not properly absorbed in the pyroluric sufferer:
- vitamin B6
- magnesium
- zinc.
This trifecta of deficiencies can cause a debilitating combination of symptoms that will vary from person to person. Most naturopaths will tell their patients that a good B complex is necessary to promote positive mood, and that magnesium is a wonderful mineral to promote a sense of calm. B6 in particular is necessary for the creation of red blood cells. It increases energy levels and proper cognitive function. A deficiency of B6 will often cause inflammation, depression, and sometimes anaemia. Magnesium is often used as a muscle relaxant for athletes, and a deficiency can be the cause of painful neck aches, sleeplessness, constipation issues, and even nervous twitching. Zinc, on the other hand, is vital for concentration, memory, and good digestion, and when lacking, can lead to anorexia, leaky gut syndrome and digestive disease.
One person in treatment for pyroluria recently described in an interview his symptoms during a flare-up. He said he often had issues with concentration and a decreased energy level when dealing with stressful situations at work or at home. He often developed insomnia and had very restless sleep patterns. The lack of sleep exacerbated his condition, making it harder to concentrate and focus on what needed to be done. “Procrastination is a coping mechanism sometimes,” he joked. “Of course it only makes things worse. Before diagnosis, I found it harder to deal with everyday problems without feeling anger and resentment toward the people that were dependent on me to do things. After treatment I’ve noticed a mighty overall change in my mood. Now when my stress levels rise and I start to feel that tension build, I know it’s time for a temporary increase in my dose.”
The client with pyroluria
The presence of pyroluria in our clients can have a profound effect on their mental and physical well-being due to the deficiency of these vitamins and minerals in their system. The client with undiagnosed pyroluria might snap at people who pile added demands onto an already excessive stress load. This creates a negative pattern of behaviour and a sense of self-loathing that grows over time. Years of bad choices result in behavioural patterns that can damage the best of long-term relationships in families and especially married couples.
The disorder is still relatively unknown to the general population and under-diagnosed when reporting symptoms to a GP. Dr. Albert Mensah, a specialist trained to diagnose and treat pyrrole disorder and other types of depression, says, “The frequency of pyrrole disorder in the population at large has been grossly underestimated. That’s because many times individuals have been diagnosed as being bipolar and even just [having] unipolar depression when in reality they truly do have pyrrole disorder” (Mensah’s interview with Healthy Family can be found at http://healthy-family.org/pyrrole-disorder-podcast/).
As well as learning to identify the typical symptoms in a new client, it is important to recognise how pyroluria affects marital and parent/child relationships in the longer term. Therapy should include coping strategies for both pyroluric clients and family members living with them. It is also important to recognise the possibility that more than one family member may be affected with pyrrole disorder. The condition is hereditary and tends to run in families at a higher rate than most diseases and conditions. It is also not uncommon for the adult patient suffering from undiagnosed pyrrole disorder to self-medicate with alcohol, which exacerbates the condition.
When it looks like anxiety: A case in point
I (Matthew) was terrified by the long line ahead of us waiting to go through the screening gate at L.A. International. Loaded with bags, kids in tow, I desperately scanned for signs of a restroom in case my nausea and diarrhoea escalated into an emergency race to the toilet. The tricyclic antidepressant wasn’t working, as usual, and I was feeling increasingly trapped in this awkward and uncomfortable social situation. My wife gave me a knowing look. “Are you OK?” I grimaced. She knew exactly what was going on.
If I recounted a dozen or so similar stories, from my adolescence to middle age, you would probably give me a preliminary diagnosis of general anxiety disorder, maybe agoraphobia or social anxiety disorder. I have been through many tests to see if my nausea, stomach cramps, diarrhoea and fatigue have any organic basis, but no biological cause was ever identified. The best that GPs could come up with was a vague diagnosis of “some sort of chemical imbalance in the brain”, to which a tricyclic antidepressant was the best available answer (although I had experimented with beta blockers and Phenergan with similar results). My career as an advanced care paramedic was mentally and physically demanding—rotational shift work; physical, mental and emotional challenges all the time. But my body was letting me down whenever I got too emotionally or physically stressed, mostly with stomach cramps and nausea. I thought I handled stress on a cognitive and emotional level very well—but my body didn’t. After a decade of shift work with the ambulance service I threw in the towel. But to my dismay, other less demanding work didn’t seem to change the fact that I was continually getting sick.
I had a degree in psychology; I knew the signs and symptoms of anxiety, knew I was developing some anxiety about my body letting me down, especially in public, but I also knew there was a biological cause of my sickness despite the medical profession denying there was anything wrong with my body. I knew when I didn’t eat well I was more liable to get sick, and intuitively knew there was something physical going on. I tried some elimination diets and guessed there was probably a milk allergy, but it wasn’t the complete answer.
Recently I visited a GP who is also a naturopath to have a complete check-up and find out, once and for all, what allergens might be plaguing me. It was through the ensuing battery of tests that I discovered there were some allergens, including milk, but more importantly, the GP suggested that I be tested for Pyrrole Disorder. The tests came back positive, and suddenly, after reading the symptoms of pyroluria, for the first time my history of illness made sense.
Now, with my system topped up with zinc, magnesium and B6, I am not getting sick like I used to. I probably have some implicit memories of getting sick in the past that could trigger some anxiety, but I also now have a clear cognitive awareness of what is really going on in my body, to overcome such implicit triggers. I am much more conscious of my diet to improve nutrient uptake, and monitor my stress levels and general metabolism to know when to increase nutrient supplements and when I can pull back. I am on a steep learning curve, and my health is a work in progress, but identifying and treating pyroluria has been life changing.
The history of pyrrole disorder
During the 1950s, Abram Hoffer and a team of Canadian researchers discovered a compound (called “mauve factor” for its chromatographic appearance) in the urine of schizophrenic patients. In the early 1970s, physician and biochemist Carl Pfeiffer and team identified this compound as hydroxyhemopyrrolin-2-one (HPL), referred to as “urinary pyrrole” or simply pyrrole, a haemoglobin metabolite that binds with pyridoxine (vitamin B6) and zinc. Clients who produce excessive amounts of this haemoglobin waste product are deficient in B6 and zinc because these elements are bound up by the HPL, rendering them unavailable for normal functions, and are excreted from the body via the urine.
Recognising pyrrole disorder
Today, pyroluria is referred to as pyrrole disorder, pyrroluria, mauve factor, hemopyrrollactamuria, or erroneously as kryptopyrrole or kryptopyrroluria (based on an early case of mistaken identity of the HPL molecule). A simple Google search using the term “pyrrole disorder” returns plenty of useful results. The condition has many and varied signs and symptoms, making it impossible to diagnose from history and observation alone. Clients may present with a “pot belly”, an inability to remember dreams, difficulty concentrating, inability to handle stressful situations, and so on (a list of common symptoms is provided toward the end of this article). Therapists should be aware of the common signs in order to identify clients who might benefit from urine screening for the condition—the only definitive way of knowing if pyrrole is playing a role.
Understanding PANS/PANDAS
Mental conditions that have been associated with pyroluria1
If you are currently working with a client who has been diagnosed with one of the following conditions and is struggling with treatment and exhibiting symptoms, a urine screen for pyroluria may be a good idea:
- acute intermittent porphyria
- ADHD
- autism/Asperger’s
- rapid cycling bipolar disorder
- depression
- Down’s syndrome
- learning difficulties
- schizophrenia
- Tourette’s syndrome
- alcoholism
- also associated with violent and criminal behaviour and substance abuse
[1. The above associations have been gathered from a number of different reports available on the web with a view to possible avenues for research, and should not be taken as a definitive, scientifically validated list. One two-part study providing reliable quantitative data is Discerning the Mauve Factor (McGinnis et al., 2008), with a summary of statistics available here: http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder. It is interesting to note that acute schizophrenia has up to an 80% correlation, Down’s syndrome 71%, alcoholism 84%, and adult criminal behaviour (sudden deviance) correlates to 71%, with many others up to the 50% mark—some high correlations indeed!]
Working with clients suffering from pyrrole disorder
There is a strong need to combine counselling with biochemical treatments to successfully deal with pyrrole disorder. As a specialist in the treatment of biochemical imbalances, Mensah, formerly of the Pfeiffer Treatment Center, suggests cognitive therapy, behavioural therapy, combined CBT, and counselling are all very helpful treatments for pyrrole disorder.
It may be tempting to believe that simply treating the biochemical imbalance with nutrient therapy will resolve the problem. But this is often not the case. Patients with pyrrole disorder can benefit greatly from cognitive therapy and other therapeutic techniques used concurrently with their nutrient therapies. Similarly, psychotherapeutic techniques will not be effective without the biochemical treatment. The best result will be achieved through a synergistic approach.
Mensah says, “Our brain patterns tend to shift as we start to get accustomed to behavioural lifestyles. And while we can treat the pyroluria and the tendency toward irritation and irritability, there still comes a cycle, kind of like an automatic reflex, that can be laid down in the brain itself. To undo that reflex, patients need to work with a counsellor. Through a combination of therapies the pyroluric patient can learn how to correct and undo those processes.”
Children with undiagnosed pyrrole disorder
Children in a pyroluric state are volatile, angry, and tend to cry easily. They are often calm one moment and angry the next for no apparent reason. They have a great deal of inner tension, and often manifest their symptoms with impulsive unfiltered behaviours. If you are working with a child who goes into frequent rages and is inconsolable and continually acting out, this can be a sign of pyrrole disorder. Children with pyroluria may have sensory issues. They are often sensitive to tags on clothes and certain fabrics against their skin. These children need down time to calm down after an up-cycle of bad behaviour. They may prefer to be alone or find themselves isolated and alone because others prefer not to be with them. These children often experience a worsening of symptoms during growth spurts. One possible but not definitive sign of pyroluria in children is multiple white spots on the fingernails.
Is it bipolar disorder or pyroluria?
Mensah says that far too often, patients given a clinical diagnosis of bipolar disorder are actually suffering from biochemical pyrrole disorder. The symptoms can be very similar, especially with rapid cycling bipolar disorder. Once patients are treated with nutrient therapy, their symptoms from pyrrole disorder can be corrected. Most cases of pure pyrrole disorder with no concurrent disorder can be resolved in 3 to 12 weeks, and when treated, any apparent symptoms of bipolar disorder will also wane.
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The signs & symptoms
The only definitive test for pyrrole disorder is a urine screen, and a GP can order such tests from a pathology clinic set up for HPL analysis. The diagnosis for pyroluria is as follows:
- Less than 10 micrograms of HPL per decilitre is normal
- Between 10 and 20 µg/dL of HPL is considered borderline
- Over 20 µg/dL is considered pyroluria
Physical signs & common symptoms2
- white spots on the fingernails
- abnormal fat distribution / larger mid-section
- irritable bowel syndrome
- delayed onset of puberty / irregular periods / amenorrhea
- pale skin that burns easily / inability to tan / thin skin / anaemia
- overcrowded teeth and poor tooth enamel (teeth in upper jaw are often overcrowded)
- joint pain / creaking knees / cold hands and feet, even in summer
- anxiety / withdrawal
- low stress tolerance
- mood swings / explosive anger / tantrums / aggression / argumentative
- depression / pessimism / disorganisation
- reading / mental focus difficulties
- motion sickness
- auditory processing disorder
- memory loss / poor short-term memory
- insomnia
- poor or no dream recall
- fatigue
- hyperactivity / irritability
- craving for high-sugar and high-carbohydrate foods
- poor morning appetite / tendency to skip breakfast
- frequent infections
- allergies
- impotence
- Hypoglycaemia / glucose intolerance
- sweet, fruity breath and body odour
- paranoia / hallucinations
- seizures
- intolerance to bright light, loud noises and strong smells
The severity of symptoms is exacerbated by stressful and traumatic situations (due to higher haemoglobin metabolism) and/or poor diet (lack of nutrients in the system), and/or allergies.
2. Obviously all of these signs and symptoms can have many different causal factors and may not be associated with pyroluria—the only way to diagnose is by urine analysis.
Concurrent overmethylation or undermethylation
Another consideration in relation to pyroluria is the patient who is also overmethylating or undermethlyating. Treatment for patients with both a methylation problem and a pyrrole disorder is tricky and may take longer to resolve. It is important to recognise when a patient on antidepressants may need to be tested for pyrrole disorder.
A patient who is overmethlyating has a dysfunctional overproduction of serotonin, dopamine and noradrenaline because of too many methyl groups being donated in their system. The overmethylation may be associated with panic, anxiety, anxious depression, hyperactivity, learning disabilities, low motivation, paranoid schizophrenia and hallucinations, chemical/food sensitivities or autism. Below is a short list of possible correlating characteristics:
- nervousness / anxiety / panic
- poor achiever / low motivation
- low libido and fatigue
- overweight
- easily frustrated
- sleep disorders and paranoia
- depression / self-isolation
- self-mutilation
- tinnitus (ringing in the ears)
- chemical or food sensitivities / allergies
- high pain threshold
- ADHD
- hirsutism (excessive hairiness on women)
- grandiosity
- eczema / dry skin
Then there is the issue of under-methylation, with its own set of unique needs. A good naturopath or medical doctor well versed in these issues is vital in assisting to assess, diagnose, and manage clients who may be suffering from such biochemical underpinnings of presenting disorders. It is highly advisable that the psychotherapist consider referring clients to a competent specialist who can rule out or treat conditions such as pyrrole disorder and overmethylation. Pharmaceutical compounding companies can produce capsules of minerals and vitamins designed to balance the biochemistry of the pyroluria patient; these are often a mixture of a dozen different elements with various supplemental and supportive roles, the core elements being vitamins C, E, B6, B5, magnesium and zinc.
Patients already on antidepressant medication
Mensah believes it is possible for patients with pyrrole disorder to respond well to SSRI medication, but this kind of treatment does not work for the patient’s pyrrole disorder symptoms. If you have a client receiving partial benefit or no benefit from SSRI medication, a first course of action should be to test for pyrrole disorder rather than suggest a change in their antidepressant medication from an SSRI to another form.
In many cases patients can present with both a methylation disorder and pyrrole disorder concurrently.
It is important to understand that partial relief from symptoms with SSRI medication can mean that undiagnosed pyrrole disorder is present. In such a case, a patient not finding relief from SSRI medication could be switched to a different form of antidepressant, and this would make their symptoms of depression worsen. Pyrrole disorder must therefore be treated separately from under- or overmethylation.
Genetic predisposition
Pyroluria is genetic, and therefore symptoms are likely to be seen in the family lineage. Symptoms can fall anywhere on a continuum of mild to severe and manifest in any number of combinations, so it can be very difficult to pin a preliminary diagnosis on anyone without a definitive urine test. But if one member of the family has tested positive then it would be prudent to test other members who are genetically related.
Complication with allergies
Pyrrole disorder often comes with food allergies, and food allergies can affect the treatment of pyrrole—both should be treated at the same time. So a part of the “package” of dealing with the disorder is dealing with any allergies and getting the gut and immune system back on an even keel. This is where a good naturopath can test for allergies and help with a management plan. Heavy metal toxicity can also play a part, as well as digestive disorders. Irritable bowel syndrome and other digestive disorders can exacerbate pyroluric symptoms and are often coupled with leaky gut syndrome. Patients with digestive issues need proper treatment to heal their digestive symptoms and improve vitamin and mineral absorption. Zinc deficiency often leads to leaky gut syndrome, as it increases intestinal inflammation. Vitamin and mineral therapy will counter the biochemical imbalances, but pyrrole disorder is a lifelong condition that must be managed with extra nutrients during times of great stress when pyrrole levels rise.
Further reading
- McGinnis, W. (2004). Pyroluria: Hidden cause of schizophrenia, bipolar, depression, and anxiety symptoms. Retrieved from http://www.alternativementalhealth.com/articles/pyroluria.htm
- McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 1. Alternative Therapies, 14(2): 40–50.
- McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 2. Alternative Therapies, 14(3): 50-56.
Websites:
The following websites are only a small sample of the information available on the web. We do suggest that a medical professional be consulted prior to treatment, preferably a qualified naturopath who has experience with pyrrole disorder and allergies Have yourself tested if you feel you may suffer from this disorder, rather than self-medicating based on articles you read online.
- http://healthy-family.org/why-am-i-so-edgy-learn-about-pyrrole-disorder-pyroluria/
- http://health.groups.yahoo.com/group/Pyroluria/
- http://www.orthomolecularvitamincentre.com/vitaminb6.php
- http://www.kingswaycompounding.com.au/News/tabid/103/articleType/ArticleView/articleId/147/Pyrrole-Disorder-Review.aspx
- http://www.vitalityandwellness.com.au/pyroluria
- http://www.safelabs.com.au/
- http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder
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Excellent information, i received a positive diagnosis for pyroluria after years of mis-diagnosis and health problems.
Hi just been reading your article and it sounds a little like my sister but we cant put our finger on it, her symptoms are very angry all the time always in pain, her whole back feels weak bloatedness in stomach thinks she is going crazy in her mind she has been told that she might be def in magnesium, zinc and b6 and Always in pain with her back plz can you help my little sister is at the end of of teather I am a body therapist and acupuncturerist
Hi John,
Find a good naturopath who is aware of pyrrole disorder and can give your sister a good examination of what may be missing in her system, what she may be allergic to, and to order a urine pyrrole test. The urine pyrrole test is the only definitive way to find out if this is a factor.
To locate someone who knows what they are doing, you can contact local pathology labs and find out if they do pyrrole tests and who are the clinicians ordering those tests.
All the best – I hope you find out what is going on with your sister.
Matt Dahlitz
I’m hoping to have my 14 year old son tested for this. He has a lot of symptoms. I reread Patrick Holfords book this eve clinical nutrition for the brain. I was advised to buy it a few years ago by a colleague. My sons problems started when he was 2 yrs old when he was weaned from breast milk then soya milk to cows milk. He has been tested for ASD/ADHD. Borderline ADHD on Connors scale. I supplement him with omega 3 from minami nutrition and Viridian viridi kid multi vits and minerals. My GP has told me to stop diagnosing him. However western doctors havent. My son has lost his childhood because of this disorder. It has impacted on his older brother also. I recently saw a Paedoatrician at RAH Paisley who told my son that its not unusual for a 14 year old to lie on the sofa and not get back off until they are 17 years. I walked out…..not what you want to hear when your son can’t get out of bed possibly due to anaemia. I’m asking my GP if they can do urine test. No doubt I will have to pay for private test.
Hi take a look at the GAPS diet as a way to begin to heal your son’s gut..this can be a beginning in the road to recovery. Best of health!
This is a reply to Johns comment above. I hope your sister gets better. I am also an acupuncture practitioner like yourself. DU20 will focus her brain. I have just placed a comment about my son. It’s been a long road out of Eden for me….Karen Campbell
Hi karen sry to hear that about your son I was talking to mum she said that when she was pregnant with sister she was suffering with very bad depression , I think that when my sister was getting her nutrition from my mum the she became short on certain minerals like b6, magnesium and zinc with I think has left her unable to deal with stress of any sort. She is considering to do the urine test
I have tbe same thing as your sister and always being told that i am depressed. I juyst went a saw a doctor at Integrative healtb solutions and she thinks i have Pyrrole disorder. I having blood test and Urine test donr this week. I suggest that you see if you can get her to see a doctor who has knowledge on thus and get some test done.
It’s great to come across an article like this. I’m 18yrs female been suffering with an eating disorder, anxiety, depression etc along with type 1 diabetes, also 2 years ago I literally became intolerant to lactose. On one of my really bad days my Mum came across this wellness health clinic website that went on to talk about pyroluria, which sparked my Mums interest. Since that day nearly 2 months ago, I have seen someone from the clinic, and have been officially diagnosed pyroluric 2 days ago. My result: 114 ug/dl HDL, huge shock. Im just glad I can take action and now improve my life. Mum is now going to get tested. Does anyone know what such a high reading means?
Hi Ellie,
I am so happy that you have found out about pyrrole disorder and you can now take some very simple steps to vastly improve your life! Your results, the 114 μg/dL, is your urine pyrrole (micro grams of urinary pyrrole per decilitre of urine). Depending on who you read, normal levels are under 20 μg/dL, and some labs say samples over 15 μg/dL are considered positive. So you are definitely positive for pyroluria, but some people can have readings in the many hundreds of micro grams. Your reading just indicates that you will probably have to start with a high dose of supplements to put back what the pyrrole is stripping out of your system. It sounds like you have a clinic that knows what they are talking about and that’s great – you have to have a health care professional who knows how to manage pyroluria effectively as most supplement compounds are specially made and require a script to order (depending on where you are). Hope it all goes very well for you!
Best,
Matt.
Eating a well balanced diet is very good advice.
However Pyrolia is not a recognised medical condition, not because it has been neglected, but because it has been thoroughly researched and debunked.
The whole theory and practice of orthomolecular medicine is simply not supported by the scientific evidence.
And in my experience many practitioners are self-deluding or exploitative quacks.
“Pyroluria (or malvaria from the term mauve factor) involves hypothetical excessive levels of pyrroles in the body resulting from improper hemoglobin synthesis. Carl Pfeiffer believed that pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the human urine to an excessive degree. and orthomolecular psychiatrists have alleged that pyroluria is related to diagnoses of ADHD, alcoholism, autism, depression, down syndrome, manic-depression, schizophrenia, celiac disease, epilepsy, and psychosis.
Pfeiffer’s methods have not been rigorously tested, and pyrroles are not considered to be related to schizophrenia.
Studies have either failed to detect hemopyrrole and kryptopyrrole in the urine of normal controls and schizophrenics, or found no correlation between these chemicals and mental illness.
Few, if any, medical experts regard the condition as genuine, and few or no articles on pyroluria are found in modern medical literature; the approach is described as “snake oil” by pediatrician and author Julian Haber. ”
“Orthomolecular psychiatry has been rejected by the mainstream medical community. Critics have noted that the claims advanced by its proponents are unsubstantiated, and even false. Authoritative bodies such as the National Institute of Mental Health and American Academy of Pediatrics have criticized orthomolecular treatments as ineffective and toxic.
A 1973 task force of the American Psychiatric Association charged with investigating orthomolecular claims concluded:
‘This review and critique has carefully examined the literature produced by megavitamin proponents and by those who have attempted to replicate their basic and clinical work.
It concludes in this regard that the credibility of the megavitamin proponents is low. Their credibility is further diminished by a consistent refusal over the past decade to perform controlled experiments and to report their new results in a scientifically acceptable fashion.
Under these circumstances this Task Force considers the massive publicity which they promulgate via radio, the lay press and popular books, using catch phrases which are really misnomers like “megavitamin therapy” and “orthomolecular treatment,” to be deplorable’. ”
http://en.wikipedia.org/wiki/Orthomolecular_psychiatry
.
“while anecdotal reports were positive, well-controlled double blind studies of pyroluria (biochemically and clinically) were negative…
…Hoffer has had 40 years to do more and more rigorous research, to produce the data that would convince even a skeptical mainstream scientific community that his ideas are correct. If he truly believes that he is right, then this is the path that would help the most patients by changing the standard of care. Rather, he formed his own fringe journal and fringe community where he can brood about the conspiracy of mainstream psychiatry and rail against the dogma of rigorous scientific research. ”
http://www.sciencebasedmedicine.org/pyroluria-and-orthomolecular-psychiatry/
.
I would strongly urge readers to be extremely wary of unsubstantiated claims made by people who are marketing multivitamin supplements as a cure-all for mental or physical health problems.
Yours truly,
Paul.
Paul, from personal experience with my own daughter who struggled with depression, anxiety, anger, etc, a diagnosis of Pyrrole saved her life and our family. Once we got on the P5P and zinc life started turning around within three weeks. I may not have believed what an incredible difference diagnosis and treatment of this can make I had not experienced it and lived it on a day to day basis. I for one believe it wholeheartedly and I meet mums/families every day now who say the same. It you have a biochemical imbalance it needs to be the first thing treated and the rest, in my experience, starts to fall into place. Dr W Walsh’s book Nutrient Power is a fantastic read to open your eyes to possibilities treatment can bring. The next step is finding a dedicated integrated GP / Naturopath / Nutritionalist who is trained and has an interest in Pyrrole. Also good to keep in mind the possibility of MTHFR gene mutation (which can also be tested for) re Anxiety and Depression, double mutations being more significant.
Hi Paul,
I can understand believing what you do when you rely upon Wikipedia and bloggers for your information. I must point out, however, that information is incomplete. The ‘debunking’ of Pyrrole Disorder AKA Pyroluria in the late 70s occurred because they went looking for Kryptopyrrole (KP), despite the person who had identified the Mauve factor as such announcing it was a misidentification[1] and it was actually a molecule referred to these days as Hydroxyhemopyrrolin-2-one (HPL)[2].
I’ve even seen the article cited as [1] used as ‘proof’ of the invalidity of the hypothesis, which I suppose works if you either don’t read it or fail to understand its meaning and focus on the elusive KP which is indeed a real substance but is not implicated in this disorder.
As far as the sources you quote are concerned this ended in the late 70s, but things have been going on since then[3][4][5][6]. As far as Orthomolecular/Megavitamin/etc treatment is concerned, and the dreadful APA hatchet job in 1973, I recommend reading Hoffer’s response[7]. It’s rather eye-opening, and completely destroyed my faith in the impartiality or competence of so-called ‘experts’ in general (not to mention Wikipedia and ‘skeptic’ bloggers). It’s rather ironic that these days Dr Walsh is invited to give lectures to the APA on this and related topics and it’s finally gaining traction[8].
Hoffer said he never took it personally, but this had condemned millions to unnecessary suffering. I’m one of those, having never found out about this until last year when my lifetime of misery was ended with testing, treatment, and cure[8] by a GP (Australian general MD)trained by Dr Walsh. I do take it somewhat personally. This drove me to do the research some of which I’m now imparting to you. I hope I didn’t waste my time in doing this.
[1]http://www.clinchem.org/content/24/11/2069.full.pdf
[2]https://pubchem.ncbi.nlm.nih.gov/compound/171278
[3]http://www.biobalance.org.au/_downloads/discerning-mauve-factor-part-1-galley-feb-2008.pdf
[4]http://www.biobalance.org.au/_downloads/discerning-the-mauve-factor-part-ii-galley.pdf
[5]https://riordanclinic.org/wp-content/uploads/2015/04/CMRCR-2-027-Pyrroles.pdf
[6]www.aph.gov.au/Parliamentary_Business/Committees/House_of_representatives_Committees?url=ee/mentalhealth/subs/attach01.pdf
[7]http://www.doctoryourself.com/APA_Reply_Hoffer.pdf
[8]https://biochemicalhealth.org/whats-this-all-about-then-2/testimonials/
Oops I forgot to add the citation for [8]:
http://www.walshinstitute.org/uploads/1/7/9/9/17997321/epigenetics_source_of_mental_dysfunction_and_the_nutrient-based_solution_william_walsh_phd.pdf
I might also add:https://www.psychiatry.org/psychiatrists/practice/professional-interests/integrative-medicine
The second [8] should be amended to [9] or even [10] when taking the extra citation in consideration.
Not true Paul. There is a lot of data; research studies and a data base of over 30,000 chemical assays – largest in the world . Look up William Walsh PhD of health research Institute . look up Mensah Medical – over 88% success rate . Mensah cured my son of a diagnosed bipolar disorder . I won’t go into the details but they were horrid . One of the meds had also given him tardive dyskinesia. We saw over 15 doctors tried at least eight medications various supplements nothing worked . Once we took him to Mensah they did testing involving blood urine and hair . He is a severe undermethylator and had mild pyroluria. Also very low zinc and elevated copper . Once on his targeted nutrients individualized just for his chemistry he improved every month .
It’s now been almost 10 years he stays on his supplements and he is tested once a year by the doctors . His brain chemistry has normalized .
So if what you’re telling me that this is just a bunch of crap and nonsense then why was his brain chemistry at age 7 dismal – by age 13 normalized ???
Mainstream doctors don’t know and there are studies many studies that do you show the psychiatric meds don’t work. So take your Wikipedia and your nonsense and just go home because you don’t know !!! For five years we struggled it was a living hell .
That one main stream Doctor heard of pyroluria or a Methylation problem. They failed miserably over and over with my son .
My 16-year-old son is now a normal healthy thriving teenager with or mental illness whatsoever . Go to William washes site health research Institute.org and actually read his research and the articles and do your homework before you get online and spout nonsense!
There are a number of these disorders that the broader medical establishment have not understood and have apparently “debunked”. Pyroluria and PANDAS (a basal ganglia autoimmune encephalitis) are two that I (Matthew) have had personal experience with – Pyroluria myself and PANDAS with my son. The medical establishment at large had no solutions and only through many years of pain (and near death for my son) did we find answers and solutions that most doctors/psychiatrists would deny. And if there’s anyone who leans into rigorous scientific research it’s me – but it’s a question of what research, what assumptions, what perspectives does the research rest?
As they say, “The proof is in the pudding” and I have to say that we’ve seen a complete resolution to both Pyroluria and PANDAS by what I guess you would call “unconventional” thinking and intervention (which down the track will become convention and we will look back and say “What the heck were we thinking?”).
Can anyone recommend a good counsellor/therapist who deals with pyrrole? Preferably on the North side of Sydney.
Thanks
Rachel you are probably looking for a GP or naturopath for testing and physical treatments. However if there has been a diagnosis of pyrrole disorder and you are seeking counselling above and beyond the physical treatment then I would recommend you contact Richard Hill (richhill@iinet.net.au), who is located on the north side of Sydney and I’m sure he can point you in the right direction.
Hello Rachel
I am a psychologist who understands pyrrole, methylation etc. Feel free to contact me if you are still looking for someone. I practice in Neutral Bay.
Thanks
Clarissa
My web address is http://www.clarissamosley.com.au
Clarissa Mosley
Hi there. I just want to say ‘great article’. However it seems to me that many sharing information, as you have, about this disorder are parroting because there is not enough information readily available. In my case, the all too common description of the angry, volatile pyrrole sufferer could not be less accurate. My experience has been one of inner tension as in fear, depression, anxiety and panic along with many, many health issues that have compounded as I aged (I was diagnosed at the age of fifty). While I have always had problems with loud noises, bright lights and many of the other symptoms, I was quiet, placid and introverted all of my life, with nothing resembling any kind of ‘explosive’ temper or volatility. As a sufferer of this disorder, I object to what seems to be a generalisation about these particular symptoms as I know from my own experience that this is not always the case.
I do thank you however, for writing an informative article as this disorder is almost unknown even though it is estimated to affect possibly one tenth of the population, and the more we share about it the better.
Dear Sue,
Thanks for your comment. I have, however, written about pyrrole from my own perspective of having the disorder as well as from a research base from the few studies that we were able to find and the few experts we were able to talk to. So I think it a little unfair to say we are just “parroting”.
It is true that there are many different manifestations of the disorder, as you realise from personal experience, and we have no intention of generalising a set of symptoms and attributing this generalisation to anyone and everyone who has elevated pyrrole levels.
I agree that there is a large number of people “out there” who suffer from this disorder and we must generate more discussion, awareness, and research into it.
Thanks again Sue for engaging with us.
Matt Dahlitz.
Thank you for writing is this article on Pyrrole Disorder. We need to build more awareness of this illness as it potentially affects one tenth of the population.
I have been diagnosed with Pyrrole Disorder and responded to the treatment very quickly and it has been a blessing to finally figure out and treat my health issues.
Like Sue, I cannot identify with the explosive anger and temper tantrums that are often used to describe people with the disorder – which is why my GP overlooked it as a possible diagnosis of my condition.
Anecdotally I have notice that females with Pyrrole Disorder often experience the depression/ anxiety associated with the condition – not the explosive temper, angst and emotional volatility.
It’s a bit like boys generally experiencing ADHD, while girls generally experience ADD. This is simply a different manifestation of the same disorder often influenced by gender and possibly hormones.
Perhaps the anger and aggressive characteristics of Pyrrole Disorder should not be so heavily emphasised as it often alienates suffers who don’t exhibit those characteristics – and consequently caregivers often misdiagnose the disorder.
For a comprehensive overview of Pyrrole Disorder and other mental illnesses – I highly recommend reading the book “Nutrient Power” by William J Walsh.
Please note – that a lot of the research he conducted on this disorder, was on males incarcerated in jail. So the sample would be skewed toward outliers in jail – who obviously exhibited the more extreme aggressive exploitive characteristics of the disorder.
Excellent article Matthew. I am a therapist who, amongst others, works with people suffering from pyrrole disorder and I just want to add a couple of my observations to the discussion on different manifestations of pyrrole.
1. Regarding inner-anxious versus reactive-explosive manifestations. Copper could be the driving force behind many of the impulsive, angry or reactive symptoms. Copper is elevated in many pyrolurics due to depressed zinc, but not all people with pyrrole and low zinc have high copper. Those with lower levels of copper seem to be the quiet anxious pyrroles mentioned by readers above. I have seen this manifestation in males as well as females. High copper shunts dopamine to noradrenaline. Noradrenline is fight or flight, many high copper pyrrole go into fight mode.
2. I agree that some form of therapy or behavioural re-modification is necessary along side treatment of pyrrole including relationship work. In relation to the various manifestation of the disorder, we can never really separate the pyrrole from interaction with individual personality, life experiences or other co-morbid disorders. For example, someone with a personality disorder, or a history of trauma or mistreatment or an insecure attachment style is going to manifest pyrrole differently from someone with a more ‘rosy’ past. The former will likely need significantly more therapy along side nutrient treatment.
3. I have also observed where children are concerned it is the high copper (and/or undermethylating) kids that have the blow-out tantrums. One little pyroluric displays his disorder in histrionic like behaviour swinging from elation to devastation. Seldom angry or aggressive and coping with stress very well, super organised (go the undermethylators) off his supplements for a few days and its torrential tears at the drop of a hat.
This is an excellent article. Thank you so much. My question is if I start supplementing with magnesium, Zinc and B6, will my urine still show signs of pyrrole disorder, or will the supplements correct the amount showing up in my urine? Should I have the urine text before I start supplementation? I hate to wait if this would help. I have been taking magnesium for a month now and feel like a completely different person. Many “issues” I had have resolved themselves. It’s the only thing I have done differently.
The amount of pyrrole would likely show as different in a test post-supplementing because when the pyrrole is bound to other substances (such as B6 & Zinc) it won’t be detected in the test because it’s changed it’s structure. At least that’s the simple answer if you don’t want to go into the mechanics of the cytochrome P450 catalytic cycle in the liver’s metabolism of toxins. There are some more details (albeit simplified) at https://www.facebook.com/PyrroleAustralia/posts/509902652436999 that you may find useful.
Hi, My Beautiful Daughter has been Sick since the Death of My Brother from Cancer 13 Yrs Ago. Within 3 Months of Him Passing, Her Hair started to Thin. We have been to Countless Dr.’s, Specialists, Naturopaths, Kinesiologists
, Iridologists Etc and I Stumbled upon some Information Last Year and After Finding a Lab My Daughter Tested Positive for Pyrrole Disorder. She has been Through Alot of Hard Challenges, Including being Badly Bullied. 5 Yrs Ago She had an Operation on Her Nose to Correct a Deviated Septum, Sinus Problems and Polyps Removed and this Surgery must have set Things Off Again and Her Weight Plummeted and She became Very Unwell and was Prescribed Effexor for Depression. She was Forced to Give up Her Psychology Studies due to being Unable to Function Normally. She is now Gluten, Lactose & Fructose Intolerant. She is being Treated ATM by a Bio Balance Practitioner but @ 23, She Feels Her Hair will Never Thicken Again. PLZ Help, it Breaks My Heart and We have Spent Many, Many, Thousands of Dollars to Help Her Grow back Her Beautiful Hair.
Karen NAIMO – i Can’t directly address how (or if) your daughter’s issues are related to Pyrrole, because i don’t know enough.
But I can share a little about hair loss because my own teenage daughter has been through the mill due to hair loss, which devastated her.
It was when her weight plummeted at the age of 16 that hair loss began. The two are connected. Sudden weight loss can trigger hair loss: what happens is that the body doesn’t get enough nutrients in the right balance.
The hair follicles are very sensitive to sudden nutritional changes and deficiencies and shut down, resulting in hair fall.
She needs to check her iron /ferritin levels, first and foremost. She needs to eat iron-rich foods and take a good multi-vitamin supplement that includes iron.
A series of three Vitamin B complex and Vitamin B12 injections (administered once a week over a three week period) helped boost my daughter’s system initially.
Also we visited an endocrinologist who did a full check on hormones. He found she lacked one hormone enzyme that allowed testosterone to dominate and this was also linked to hair loss.
In other words, we went on a year-long journey – visiting an endocrinologist, a naturopath and my daughter eating in a more balanced way – in order to somewhat improve the hair.
Primarily, she upped her protein, her vitamin B and iron.
She also took Vitamin B5 (Biotin) supplement for hair and nails.
Her hair looks better now, but frankly has never gone back to what it was when she was in her early teens.
Hope this has been of some help…
Hello, can anybody recommend a practitioner that’s very experienced in Pyroluria in adults and children & in Adelaide or does Skype consults? Thank you
Not sure of anyone specifically in Adelaide, but generally naturopaths will know more than a GP, so I’d be seeking out a competent naturopathic practitioner. Try Sue Kira https://www.truevitality.com.au/about/ who is in Queensland but I think has a list for people in your area. Also ask on this page https://www.facebook.com/PyrroleAustralia . Sometimes asking the local pathology center or lab who is ordering the pyrrole tests can also uncover the ones who are aware of the disorder – they will generally let you know who in the local area may be in the know. Try http://www.safelabs.com.au/urinary_kryptopyrrole_testing.php as they do this test. Let us know who you find.
Hi Mandy, I don’t know of anyone who can help in Adelaide, but I’m very experienced with pyrrole disorder and do offer Skype and Phone consults. My name is Sue Kira and you may contact me via my contact page on http://www.truevitality.com.au or you can go to the clinic tab on the website main page and take the drop-down option of prices and bookings to book in to speak with me via Skype or Phone. with love, Sue ND
H Mandy,
Sorry for the late reply, but there are GPs trained in this by those who have been doing the most advanced research. We’re lucky that in Australia we have the highest proportion of such praccies per population in the world, go us. http://www.biobalance.org.au/patients/find-practitioners#5tab
Thank you for your article. I really feel my aggressive, angry, ADHD kid may have this disorder. Only problem is, we live in Jordan where I’m assuming the testing is unavailable. I’ve heard that you can post samples for testing, but also heard this option isn’t very reliable. Is there another way of testing? Blood tests of vitamin levels etc? Would rally appreciate your help. Thanks
Hi Nikki. I don’t know about the availability of the test in your area, and I know little about Jordan, but I would assume that Israel would have labs that do this relatively simple test. I guess a Google search would find someone close by. The sample needs to be kept from light and frozen (and there’s probably a time factor as well), so it would have to be done locally. The urine test is the most reliable test to take as it measures the actual pyrrole coming from your system. See what local naturopaths can tell you. Let us know what you find out!
Hi Nikki,
I don’t know of where you can get tested but I definitely know that the postal option is NOT the way to do it as pyrrole is extremely sensitive to heat and light. Here’s a link to an article written by the guy who runs the lab I use in Australia (AAL) about the importance of handle of the sample (plus more). I do know that he is working on a method of being able to transport without freezing the sample so it might be good to contact him personally and be on the list for when that is ready. here’s the link to that article http://www.truevitality.com.au/articles/pyroluria/ with love, Sue
Hi…you could probably cross the border and get the test done in Israel. They are very advanced in medicine and naturopathic treatments
Hi Matthew,
Love your article and I would love to share a few things that I have come to understand from a naturopathic perspective. I’d first like to share that not all with pyrrole have mental health imbalances or bad moods or history of behavioural issues. Some, like me had a history of being sick a lot as a child. I would get recurrent tonsillitis till I was a teen, then later I had issues with digestion and hormones.
From a psychotherapist perspective, I’m guessing that you wouldn’t see this other group of pyrolurics but they may come with a child/adolescent with behavioural problems or anxiety but mum or dad may have some of these other signs.
When you look at all of the symptoms it is easy to think that nearly everyone has pyrrole disorder and in my experience I’m guessing that about 60% of the population does have it to some degree with many of these are what I would call, well managed, meaning that they know their limitations with regards to what they do, late nights, stress levels etc, eat well and may even take vitamins and minerals to support themselves to the best of their knowledge.
I put myself in this category until I hit menopause and the wheels fell off (all good now). Stress of any kind pushes up pyrrole levels so it’s often not till there’s a trigger of some kind that someone may get changes that happen that they just can’t deal with by getting a good night’s sleep and taking a few vitamins which then leads them to seek help.
There are mixed feelings about if this is a genetic condition or not. For some it seems that it could be caused by other factors such as stress, illness, leaky gut, infections etc, and there are certainly plenty of sceptics that say that it doesn’t even exist at all and that it is a made up condition, but at the end of the day none of that really matters. What does matter is that if someone can feel more settled, more calm, get better sleep, have a stronger immune system and generally cope better with stress and life, then hey it’s worth taking a few vitamins and minerals.
From a naturopathic perspective I have found the clients most likely to have pyrrole are those that seem to not respond as well to a treatment regime that would normally work for everyone else, or they may have been on one type of antidepressant that helped a little but a different type made them worse. They are often the ones that have been everywhere and tried everything and don’t seem to be getting any better. Having said that, these are also the people that often have other complications such as methylation issues as well as pyrrole and care needs to be taken with supplementation. In these cases not just any old B6 or zinc etc will do the job for them. They need expert care and attention.
Someone experienced with genetic variation of SNP’s such as COMP, CBS pathways, MTHFR mutations and the like. Not all naturopaths and certainly not all doctors are up to date with this side of the treatment regimes needed, but are a good place for many to start.
Often clients will need more than one type of therapist to best support their needs.
One last thing I’d love to share is that a high score of HPL in the hundreds doesn’t necessarily mean that you are a lot worse than someone with a score in their 20’s and it also doesn’t mean that the dose of B6 and zinc needs to be higher as these scores can be effected by methylation issues too.
For example, I had a young couple who came to see me. The guy was the client and his girlfriend came for moral support. Let’s call them Jeff and Jenny (not their real names of course). Jeff had terrible anxiety to the point that he had to give up his normal job and work from home via computer. It was a big ordeal for him to even come to the clinic. Jenny seemed to have no issues with her mental health. We spoke about looking at pyrrole and talked about some of the symptoms. Jenny listened intensively and said she would like to get tested too as she had some problems with her immune system. Jeff’s score came back as 22.3 and Jenny’s score came back as 355, but I gave them the same total dose of B6 and zinc. Jeff was given the active type of B6 called Pyridoxl 5 Phosphate, whereas I gave Jenny the normal pyridoxine hydrochloride – both had 50mg, but I did give Jeff more magnesium and gave Jenny a little more zinc and a couple of other ingredients. To cut a long story short they both were supported well by 50mg of B6 but they had very different scores, different symptoms and different B6 was needed in each.
I find that many practitioners especially GP’s give their clients around 300-400mg of B6 up front along with 100mg zinc (way to high as a start dose in my opinion)and this often blows their mind so to speak and often they will give up trying vitamin and mineral therapy, so my motto is go low and go slow. With some clients I will only use 10mg to start with if I sense their sensitivity or if they have expressed issues in the past.
The main thing I love to express if you have pyrrole, is do as much research as possible, keep a file of what works, what makes you worse and what tests you have done and most of all, never give up.
With love, appreciation and dedication,
Sue Kira – Naturopath & clinical nutritionist @ True Vitality
For more reading pleasure on pyrrole please check out this link https://www.truevitality.com.au/all-things-pyrrole/ and feel free to share. 🙂
Thanks Sue for that comprehensive summary – so valuable! Really appreciate you bringing your professional knowledge to the table here. This can be such a complicated and confusing issue for many, with individuals manifesting so many different symptoms, that it’s no wonder main stream medicine has had trouble pigeon holing and managing this disorder.
Please stay in touch, I’m sure our readers appreciate your wisdom on this topic!
Kind Regards,
Matt Dahlitz
Matt:
What type of zinc is best. I have been taking Thorne’s double zinc (picolinate) for a couple of years. But nothing is working right now.
Greetings, I learned about Pyroluria after years of dealing with worsening symptoms and being diagnosed with many other conditions but never finding the right treatment. When I read the list of symptoms of Pyroluria, it was like I was reading my own symptom chart. So, I got tested, but my reading was in the normal range. So, either the reading was wrong, or there are reasons that my pyrrole levels can be low while still also being low in Zinc and B6. I’m hoping this is true, but can someone confirm? I can’t afford more testing of Zinc and B6, so should I just try these supplements and see what happens?
Thanks
Excessive pyrroles would not be the only reason for low zinc and B6. Generally it could fall under the categories of dietary deficiency; absorption issues; increased losses (i.e. Pyrrole disorder); increased utilisation (increased metabolism); or chronic disease. Here’s Dr. Axe on zinc https://draxe.com/zinc-deficiency/ and B6 https://draxe.com/vitamin-b6-benefits/
Try supplementing but be under the care of a health care professional like a naturopath who can guide you if you can afford it.
Greetings, I have about 80% of the physical and mental symptoms listed for pyroluria, yet my Kryptopyrole test came back normal. However, I was told this can be caused by low zinc, so I got my zinc plasma tested and it was low. I’m thinking of getting a B6 test as well, but based on my symptoms, it seems like I either have pyroluria, or similar deficiencies. What else could case deficiencies if not pyroluria? What types of zinc and B6 should I take?
Thanks
Hi Brian,
Check out this very simple outline of zinc deficiency https://draxe.com/zinc-deficiency-symptoms/ There are a number of reasons why you may be low in zinc (either intake or uptake/assimilation) and different solutions – you really need to get the personalised help from an orthomolecular specialist like a naturopath or naturopathic doctor.
I’ve started taking more zinc and B6 – I was definitely zinc-deficient – but I haven’t had the urine test. Will this throw off the accuracy of the urine pyrrole test?
You will have to check with whoever is administering the test but in general you have to be clear of such supplements for 24 hours or longer to get an accurate reading. Check with the lab that is doing the test.
My sister and my cousin have both been tested positive with Pyrroles, they are in the eastern states of Australia, but I am in Perth. Myself and my children definitely have these symptoms.
Do you know of any doctors here in Perth that are confident in testing and treatment of Pyroluria?
Thank you
Hi Jutta,
There are many alternative praccies who treat this, but I was treated very successfully by a GP trained by those who have done the most research in this, the Walsh Research Institute in the US. They generally only train GPs either through Bio-Balance Australia or the Australasian College of Nutritional and Environmental Medicine (ACNEM).
Mine was trained through both, as ACNEM also have a wider Holistic approach. Bio-Balance GPs are very good, but tend to specialise in just the Pyrrole Disorder/Pyroluria and its associated Mental Health biochemical disorders in a focused way. Best of luck! http://www.biobalance.org.au/patients/find-practitioners#8tab
Thank you Dominic, I have looked at the list of Doctors in the bio Balance link you sent me. earlier I had made an appointment with a local GP who deals with natural therapies, interestingly however she was not on this list.
Her receptionist said she can test for Pyrroles. But I think after reading your comments I should choose to see one of those Doctors on the Bio Balance List. My sisters Doctor In Queensland who diagnosed her was also on this list, he noted she is also suffering over – Mythelation. I believe it would be best that I see someone experienced in treating Pyrroles effectively. Thank you for this site and your advise.
You’re welcome, Jutta.
Perhaps her local GP was trained through ACNEM. I have great respect for Bio-Balance GPs, and intend to become one if I ever can, but I have found that ACNEM GPs have a much wider perspective when it comes to the body as a whole. There are so many factors besides just supplementation which affect brain disorders, and which can complicate treatment.
The GP who tested, treated, and ‘cured’ me of Pyrrole Disorder/Pyroluria symptoms so effectively was trained through both Bio-Balance and ACNEM and if I had to choose between just one or the other, I’d now choose ACNEM in light of what I have learned since. I myself am an overmethylator, this biochemical approach to brain and mental health in particular can be an extremely complicated business. Best left to the experts. All the best.
Hello! I has a pyroluria/ kpu test a few months ago that came back negative though I have many of the symptoms and have had them all my life. Is is worth having another test? Are there factors that can affect the results – The lab suggested doing the test when my anxiety levels were high which I did- Well I also have hypothyroid and low cortisol and high viral load from epstein barr- can these affect the results?
Gratefully
Lucy
Hi Lucy. I am not at all an expert but would suggest if your baseline pyrroles are normal then the mechanism behind the symptoms (pyrroles stripping the system of zinc, magnesium, B, etc) may not be pyrrole but something else going on, from methylation pathways to various causes of inflammation. I don’t know what your symptoms are but I’d be teaming up with a knowledgeable professional to look at other causal factors. Certainly stress increases pyrroles as metabolism is up-regulated, but if your base levels are normal I’d bee looking at other avenues. But again, I’m not the expert, but wish you all the best discovering what’s going on.
Thank you so much ! That is very helpful !
Lucy Philips, the comment from NPT is misguided, in my opinion. What they are not accounting for is the extreme volatility of HPL in sampled urine, resulting in a tendency to false negatives. If you have the symptoms, get a second test for HPL, preferably from a different lab, and be very meticulous as to how you follow the directions. I have full-blown pyroluria, successfully treated according to the Walsh Protocol of Zinc, B6, Calcium/Magnesium, Vitamin C, EPO oil.
Yet my first HPL test was low-borderline (around 12); because I definitely had the symptoms (along with most of my family), I got retested, and the HPL lab came up at 30!
Thanks David, that’s good advice. I, and all my kids, have pyroluria and have been tested multiple times – I didn’t realize the test could be so volatile. Good to know.
Matt.
They need to provide something for these truck driver to help them stay in shape. If there is a way they can give them a discount or pay for a gym membership that would be amazing. If they don’t they may end up losing a lot of their workers to these health issues. Apart from that, don’t you want your workers to be healthy anyway?
Hi, I have been diagnosed with Pyrrole after years of depression, anxiety, fear, constant viruses and nerve/muscle and joint pain as well as intolerance to many foods with many digestive disorders. I keep trying to take the compound medication but the night time capsules with the zinc make me extremely sick within in a few hours of taking it every time. I feel like I’m poisoned. I’ve lowered the dose from 4 a night to 1 and it still makes me extremely sick and scared.
Not sure what to do. I can handle the morning dose.. I do get headaches and nausea but it is manageable.
Natalie, try the zinc with a meal. It’s generally pretty rough on an empty stomach for most people. Also, with nerve/muscle/joint pain, does your protocol include Magnesium, which is often depleted in pyrolurics.
Pyrrole Disorder can best be described as the abnormal synthesis and metabolism of the oxygen carrying molecule in your blood, called haemoglobin. All cells in your body produce waste or by-products and the by-product of haemoglobin is a metabolite. In this video Naturopath Greg Newson explains the reasoning behind the fact or fiction issues surrounding Pyrrole Disorder.
If the Pyroluria test is negative, perhaps many of the symptoms are due to undermethylation (or overmethylation): https://www.vitacure.me/blogs/news/difference-undermethylated-vs-overmethylated-symptoms
Great article. I have been on a supplement protocol for 2 years. It has changed my life. Two weeks in I was astounded at how a sense of calm overtook me – despite starting at a 1/4 of my dose. For anyone starting out be patient as it takes some adjusting, but is worth the discomfort 100%. I still have negative symptoms at times (as my doctor said, it’s like peeling an onion). The difference is I now bounce out of the negative feelings fairly quickly. I can recognise them as pyrrolic symptoms and now know to increase my dose or have an epsom salts bath etc. Keep telling this story NPT! We need more medical practitioners to get on board!
That’s brilliant. Can you tell us if you self-diagnosed or got tested. Also, what dosages do you take?
Thanks,
Ed.
Hi there,
Really interesting article, thank you.
I’m just curious, I’ve been donating plasma every 2-3 weeks for a good couple month. Wondering whether it’s a bad idea for someone with pyroluria to give so often… ?
I think more people have pyrroles than we think. My daughter is a chronic sufferer and has been diagnosed with pyrroles. She is taking compound zinc, B6 etc. Her mental and physical health is terrible and getting worse. She becomes suicidal sometimes.She’s 28 years old and finds it extremely hard to look after herself and can’t work because she’s so debilitated. She can’t sleep properly, she has nightmares, sweats and she vomits nearly every day. Modern medicine don’t recognise this disorder and mental health services are so pathetic and disjointed. I fear it’s going to kill her or she’s going to kill herself because she’s had enough! Please help us, I beg you….Virginia
Proponents of orthomolecular medicine need to submit their findings to peer reviewed scientific journals to determine effectiveness and to rule out placebo effect in those who think they are benefiting from this method. So far, limited proper testing has shown no effectiveness. Our hospital emergency rooms receive patients on a regular basis who have tried such “natural” approaches and are now ill again.
Hi Vivian,
I’m so glad you’re showing interest in the latest peer-reviewed published research on this. There are so little double-blind studies on this done these days due to lack of funding but what there is in the way of clinical, pilot, and open-label studies does seem to be promising after the limited previous independent testing done without following proper methodology failed to replicate the early studies. These are a few I’ve managed to identify which are relevant:
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/vitaminmineral-treatment-of-attentiondeficit-hyperactivity-disorder-in-adults-doubleblind-randomised-placebocontrolled-trial/6DECDD36BD673FB31C92C64BAA9BBA14
https://www.liebertpub.com/doi/10.1089/cap.2016.0199
http://journals.sagepub.com/doi/10.1177/2167702616631740
It’s terrible there is such little proper testing done, and research, this would enable people who wish to try this approach to avail themselves to properly trained physicians which would certainly make the risk of any complications much less. I feel very sorry for anyone so desperate as to have to resort to practitioners of any stripe ignorant of the latest research, or worse yet doing it alone. That is indeed a recipe for disaster.
https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-7-2
Yours,
Dominic
This is a very informative article. After reading this post, I’ve conducted research on my own and found out that not many doctors know about Pyrrole disorder despite it being quite common. It also sparked the question as to whether this disorder is real or not, considering that it’s symptoms are vague, nondescript and could be attributed to virtually any trivial or serious illness.
Yes the broad spectrum of symptoms does make it difficult to put it in a neat diagnostic box – welcome to the world of complex systems!
Hi, I was diagnosed with pyroluria a few years ago. Is it true that symptoms can come in bouts? I had noticeable symptoms from ages 5 to 6 then severe symptoms when I was 15/16 and after improving for a while I stopped taking medication but my symptoms are returning again. Do you know why after a period of time my symptoms go away and I no longer need medication for a while? Also to note: I was only given medication after my diagnosis when I was 15, so my problems mostly resolved in between ages 6-15