Living with pyroluria - a layman's guide
“Real generosity towards the future lies in giving all to the present” ~ Albert Camms
Tiring of misunderstandings surrounding Pyroluria I have decided to share my inner world of living with this often undiagnosed and unrecognised illness which can accompany psychiatric conditions and is not currently being treated by mainstream doctors.
Pyroluria is also known as Pyrrole Disorder, Pyrroluria, Krytopyrroluria (KPU) or more precisely hemopyrrollactamuria (HPU) It is a genetic chemical imbalance involving an abnormality in hemoglobin synthesis and sufferers produce too much of hemoglobin synthesis called “pyrroles” which bind to or inhibit nutrients such as zinc, vitamin B6, biotin and Omega 6 fat GLA from reaching their targets within the body. These nutrients are then rendered unavailable for important physiological functions in the body such as co-factors for enzymes in metabolism. These essential nutrients when bound to the aforementioned byproducts are excreted into the urine as pyrroles (Pyroluria or Pyrrole Disorder,(2017) www.custommedicine.com.au by Michael Seraffin)
Pyroluria is an illness that is not widely recognised by the medical profession but it incidentally flies under the radar and is considered the unicorn in the room in modern medicine. It exists as a minute overlooked consideration and a definitive compounding factor in a forgotten corner of inherent possibility and scientific reliability. It accounts for the unexplained morphing of social anxiety into an intolerable and persistent condition of savage symptoms which inhibit the patient and cause untold suffering. Research into pyroluria is now burgeoning into a breakthrough science which is rising up as a revelation to explain this elusive and notoriously difficult to interpret and enigmatic “terra incognita” that is pyroluria.
The true determinants of this unusual condition were unearthed in innovative research studies as far back as the 1960's. It was first identified by Carl Pfeiffer, the Director of Research at the now defunct Brain Bio Center near Princeton New Jersey where it was studied intensively. Their formal research indicated that a substance called “kryptopyrrole” was found in the majority of schizophrenic patients. They discovered that pyroluria bound both pyridoxine and zinc causing a double deficiency. The role of zinc and copper have a tandem inverse relationship in that high levels of copper are typically found broadly in the psychiatric community. (Orthomolecular Treatment For Schizophrenia (1999) pg 28 by A. Hoffer M.D., Ph.D)
Despite Pyroluria being widespread it is NOT recognised by many mental health practitioners. It is estimated according to Joan Matthews-Larson considered an expert on the subject that the prevalence is as follows to be as high as 40% of all adult psychiatric patients 20% of children psychiatric patients, 30% of people with schizophrenia and 40% alcoholics. Psychiatrist, Abram Hoffer worked primarily with schizophrenic patients but found pyroluria was also present in 25% of his nonschizophrenic patients including adults with anxiety, depression and alcoholism and children with learning disorders and behavioural disorders . Pyroluria is also present in about 46% of people with autism spectrum disorders and 71% Down Syndrome. (excerpt from The Antianxiety Food Solution by Trudy Scott)
This obscure science is now considered a research field du jour and its growth and awareness being raised and accelerated amongst nutritionists specialising in anxiety. They accurately identify it as being one of the most plausible and salient governing factors of many presenting social anxiety cases.
In previous tests done by Pfeiffer very few patients had too little copper and instead were overloaded with higher saturations of copper being dubbed a negative factor while zinc is a positive factor. Excessive tissue copper can be the result of copper water pipes, copper IUD's or copper cooking-ware and according to Pfeiffer contraceptive pills and deficiencies of Vitamins C or B3 alter body chemistry and cause copper to be retained. Those whose drinking water comes through copper pipes should make a discerning switch to a pure natural water. (Healing with Whole Foods pg 443, (2002) Paul Pitchford)
These natural types of water include the esteemed “Nobles” supermarket-brand which is endorsed by specifically by allergy doctors as many purified waters on the market have been identified by investigative journalism as being nothing but a predatory marketing racket and hoax. They have also indeed have been scientifically proven by water technicians in official studies to be no better in quality and purity than tap water. Other options are to use purified, remineralised water from an ethical company that sells a quality product with the public's budget in mind such as Alkaway water filtration systems.
The low levels of zinc and Vitamin B6 in pyroluria account for a barrage of social anxiety conditions primarily a withdrawal from social engagement. It's typically accompanied by compensatory safety measures utilised by the sufferer to manage and transcend the impending meltdowns and to actively contain or navigate away from known triggers using avoidance strategies. In the book “Love you to bits and pieces” penned by Gillian Helfgott, wife of Australian pianist and psychiatric survivor David Helfgott upon which the acclaimed movie “Shine”is based, Gilllian mentions that David would insist he should never answer the phone. She would be instead enlisted to handle any of the incoming phone messages like a secetary which I can only possibly attribute as being a pyroluria “containment strategy”
The mild or moderate imbalances of pyroluria can be activated by being in crowds, accompanied by feeling of inner tension and nervous anxiety socially, mood swings and bouts of depression with its genesis forming in childhood and getting progressively worse into the future. People of this condition tend to build their lives around one person and become somewhat of a loner and are incapacitated by stress and change. This plan constitutes both success and failure as the intensification of compounding symptoms only serves to alienate the sufferer and contribute to more incumbent feelings of powerlessness and festering inaction and apathy. While the whipping up of the maelstrom generated by pyroluria can be strategically self contained by vigilance it can't ultimately mend what has already been torn apart typically as a result of a traumatic incident or stress as much of it being of a genetic predisposition.
This is one of many Pyroluria symptom lists available off the internet. I would strongly caution against deciding that you have Pyroluria disorder from any of these listed symptoms below. There are similar lists for many other different disorders there is up to 90% overlap between the various lists. It would be quite possible to diagnose the same person with numerous different disorders using these symptom lists and come up with an incorrect diagnosis. But still as a reference guide it has some merits if you or a loved one have a substantial number of these traits then it may be a poignant case and would be worthwhile to take the next step and investigate having an official Urinary Pyrroles Test to properly diagnose the disorder with both reliable and conclusive results.
Most Common Signs and Symptoms
1. Being anxious, shy, or fearful or experiencing inner tension since childhood, but hiding these feelings from others
2. Having bouts of depression or nervous exhaustion
3. Poor dream recall, stressful or bizarre dreams, or nightmares (low vitamin B6)
4. Excessive reactions to tranquilizers, barbiturates, alcohol, or other drugs, in which a little produces a powerful response (low vitamin B6)
5. Preferring not to eat breakfast, experiencing light nausea in the morning, or being prone to motion sickness (low vitamin B6)
6. White spots or flecks on the fingernails or opaquely white or paper-thin nails (low zinc)
7. Liquid zinc sulfate having a mild taste or tasting like water (low zinc)
8. Poor appetite or having a poor sense of smell or taste (low zinc)
9. Joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (low zinc)
10. Pale or fair skin or being the palest in the family, or sunburning easily, now or when younger
11. Disliking protein or having ever been a vegetarian or vegan
12. Being sensitive to bright sunlight or noise
13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran
14. Frequent fatigue
15. Being prone to iron anemia or low ferritin levels
16. Tending to have cold hands or feet
17. Having frequent colds or infections, or unexplained chills or fever
18. Reaching puberty later than normal or having irregular menstruation or PMS
19. Having allergies, adrenal issues, or problems with sugar metabolism
20. Having gluten sensitivity
21. Neurotransmitter imbalances, especially low serotonin
22. For women, belonging to an all-girl family or having look-alike sisters
23. For men, having a mother from an all-girl family or a mother with look-alike sisters, or all the females in the mother’s family bearing a strong resemblance to each other
24. Avoiding stress because it upsets your emotional balance
25. Tending to become dependent on one person whom you build your life around
26. Preferring the company of one or two close friends rather than a gathering of friends; becoming more of a loner as you age
27. Feeling uncomfortable with strangers
28. Being bothered by being seated in the middle of the room in a restaurant
29. Being easily upset by criticism
Less Common Signs and Symptoms
30. Stretch marks or poor wound healing (low zinc)
31. Crowded upper front teeth, many cavities, or inflamed gums or wearing braces (low zinc)
32. Bad breath and body odor (or a sweet, fruity odor), especially when ill or stressed (low zinc)
33. Being prone to acne, eczema, herpes, or psoriasis
34. Reduced amount of hair on your head, eyebrows, or eyelashes, or prematurely gray hair
35. Difficultly recalling past events and people in your life
36. Focusing internally, on yourself, rather than on the external world
37. Tending to have morning constipation
38. Tingling sensations or muscle spasms in your legs or arms
39. Feeling stressed by changes in your routine, such as traveling or being in new situations
40. Your face looking swollen when you’re under a lot of stress
41. Cluster headaches or blinding headaches
42. One or more of the following: a psychiatric disorder, schizophrenia, high or low histamine, alcoholism, learning and behavioral disorders, autism, or Down syndrome
If you check off 15 or more items, especially the more common ones, it’s highly probable that you have pyroluria and will benefit from taking zinc and vitamin B6 supplements. I encourage you to be tested, but if this isn’t possible, or even if you don’t have pyroluria, supplementing with zinc and vitamin B6 may be worthwhile if you have a large number of these symptoms.
This questionnaire is based on Trudy Scott, nutritionist's experience working with many clients with pyroluria, along with information from Depression-Free Naturally (2001), by Joan Mathews-Larson, Nutrition and Mental Illness (1987), by Carl Pfeiffer, and Natural Healing for Schizophrenia and Other Common Mental Disorders (2001), by Eva Edelman.
Living with pyroluria, a hard to diagnose mystery illness can leave you flailing and feeling like a fish out of water. As a personal account it can suddenly erupt and seize the mind and body at the jarred interface between you and almost every point of relationship. Your circuitry begins to fire and something of a precipitous nature begins unravelling energetically thus engulfing and taking lodgement in the essence of your being. Over time the toppling losses can be really discouraging and you begin counting daily your tiny triumphs which converge in the current of courageously facing this curious malady. You can try with all your might to approach it with due diligence to seek “appropriate” behavioural therapy as if it were a type of neuroses mechanism that could be transmuted by well-wishing. Under the guise of psychotherapy it can get treated as an old agonizing problem to be immediately solved in 10 sessions or done away with. The failure of therapy only serves to rouse and inflame your feelings of hopelessness as pyroluria does not lose its force nor does therapy inocculate yourself against it. It trivialises an affliction which has required nothing but staunchness and bravery to face a hopeless situation echoing year after year over the course of your life. It brings to mind your human frailty and limitations. Its beset by ongoing deeper reflections on why this difficult impasse marks you out as so different and how your destiny may or may not be bound by eliciting some tie of sympathy from those around you.
You are oppressively aware that your happiness and wellbeing is inextricably interwoven into every-single-one your interractions in the sphere of human fellowship. The undue amount or re-hashing of conversations in your mind over this situation as if it were a weakness or embarassing character defect or terminal flaw. You enquire ceaselessly into the meaning of this existential reality but it only points to an absurdity. Having being made resigned to shouldering a burden that can unleash chaotic probabilities at any given moment. I have borne witness to the un-meritorious biases and careless sentiments of the casual onlookers, mainly that of friends and family. I have tried not to wince at others implausible and terse "psychological fact-finding" and inaccurate judgements about this situation. I know what its like to be at the receiving end of the limited logic and sense-making being billetted around my condition as a viable explanation. You can be cast in a mould of absolutism from other peoples superior vantage position of "ease". I instead chose to have an unswerving faith however that one day maybe things would change even in the face of crushing disappointment and almost irretrievable loss as things went from bad to worse.
Pyroluria exists along an arc of rampant proportions and unleashes itself during your most inconvenient moment, dampening your world and placing you into a sombre darkness. You remain shaken to your very foundations bringing everything about you and who you thought you were and your very dignity into question. In the forefront of this mileau you grapple with this turbulent circumstance while everyone else seems intent upon dismissing you with their partial and dismissive views. It becomes a hapless tiring struggle that saps the prana from your body while the final victory seems completely out of reach as this condition disarms you and by contrast everyone else enjoys abundant supply of good things.
Your steadfast commitment to solving the riddle, using all the staples of psychology: talking it away, having exposure therapy, unearthing the last layer of neurotic armouring is both fruitless and only serves to compound your feelings of demoralisation in the face of these supposed clarifying forces. The whole architecture of your body and nervous system feels like it is unhinged like a restless overturned beehive and this grand untackled question of “How do I get rid of IT?” I fell under the demonising spell of psychology and its explanation that fell partway between the poles of a convenient neurosis diagnosis or the result of an incidental psychological scar.
Pyroluria is all about when your interior world and the inviobility of your external reality collide and manifests as deeply troubling pathology over which you possess no control. Thinking about it and trying to rifle through your approach to dealing with this condition and improving your reactions is at its best futile and falls sharply. This curious anomaly renders all your coping strategies bungled and in vain. It contributes to a pallid and ghastly set of pathologies bearing much scrutiny for being such a monstrous encroachment on one's being. You desperately want to be unyoked from this intense spiralling and frenzied bending but there exists no accord from this gripping inconsolable state. Its like a vortex of energy rumbling from the depths of your being from the slightest of stimuli that crosses a threshold and then reverberating like a maze of panic scattering every pore. The onslaught holds you captive for each eternal moment and there is no foothold to be found in the undertow. After being penned like a slave to this savage curse you then collapse in a weary heap after the intense sapping and draining. After that you give yourself a prescription for convalescence for many days to recalibrate yourself, restore your original pallor and to bring your soul back from the brink.
Pyroluria leaves one miserable in a quest to discern what causes this terrible dilemma. You grasp at straws as there is no obvious name or face for your affliction and keep toiling until there is no stone overturned. Discovering you may have pyroluria represents a spectacular breakthrough. It's a feat in of itself - one laboriously sought after and you then precede to taking advantage of it with a fury born of intense new-found hope. As a metaphor, it embodies your own personal Everest in your quest for healing resolution through the mysterious workings of the orthomolecular science of hemoglobin synthesis.
You pool everything you have into understanding this labyrinthine workings of this disease and its mounting evidence. For it offers a hint there may be a more solid guarantee that the troubling symptoms will in time dissipate and become a distant rumble. It requires a commitment to rising to the situation at hand having withstood years if not possibly decades of living with the uncertainty and worsening of this unchecked disease. You can then wrest from this inner turmoil which has assailed you with some plausible explanation and begin to re-orient your life enjoy a radical transition to a better state of reality.
By not succumbing to apathy and not acquiescing to other peoples unsolicited advice and listening to your inner voice you can be guided to wield control over your destiny once again. You no longer have to live in a state of reaching unbearable limits that fester. It can only lead to shutting down and the final self defence mechanism of apathy which is sadly so common in the psychiatric community. You make a commitment to heal, let yourself be grasped in order to remould your future, trying it on for size and be responsive to what “might be” and envisioning a new life for yourself. The future as it beckons you is unquantifiable and your situation in which you have found yourself is only seen through other people's distorted lenses at best. We only get glimpses of the virginal territory - but standing on strange and bewildering territory the only way out of this discomfort is forwards. The choice is to cringe from it but affirm the wonder of the newness and embrace the fecund ground around healing this mystery ailment. With that being said I will now defer to the treatment of pyroluria.
The supplements for pyroluria. Pyroluria is easily treated in part by restoring Vitamin B6 and zinc through supplementation. The active form of B6 (pyridoxine) is known as Pyridoxyl-5-phosphate, unlike the typical form of Vitamin B6 found in chemists or health-food stores. These are the zinc, vitamin B6 (P-5-P), evening primrose oil and a good copper-free multivitamin are what Trudy Scott, nutritionist uses for her clients with pyroluria or for those who score above 15 on the questionnaire.
- Solaray OptiZinc 30mg. Zinc (as Zinc Monomethionine [OptiZinc®] 30 mg, Vitamin B6 (as Pyridoxine HCl) 20 mg. The zinc in this form seems to be well absorbed by many of my clients and is available over the counter. This also does not contain copper. Be careful as there are other OptiZinc products on the market that do contain copper (Source Naturals is one example)
- Douglas Labs Opti-Zinc: Zinc (from 150 mg Zinc Monomethionine) 30 mg. The zinc in this form seems to be well absorbed by many of my clients. This also does not contain copper.
- Designs for Health Zinc Challenge: Zinc sulphate monohydrate in a base of distilled water. Each 2 tsp provides Zinc sulfate monohydrate 8 mg. Use this for testing your zinc status as described here: Zinc deficiency is common: using liquid zinc status test as an assessment tool
- Here are a selection of 100 mg Vitamin B6/pyridoxine. Use dream recall as a way to monitor if it’s working, plus social anxiety and mood improvements. If this doesn’t work you may need to use the activated form in conjunction with or instead of this one (see below)
- Pure Encapsulations P5P 50 (activated B-6): pyridoxal 5 phosphate (activated B6) 50 mg, vitamin C (as ascorbyl palmitate) 3 mg. This activated form of B6 may be needed if the 100-500 mg B6/pyridoxine doesn’t work or may be needed in addition to vitamin B6/pyridoxine. Use dream recall as a way to monitor if it’s working, plus social anxiety and mood improvements.
- Designs For Health P5P 50mg: another good product with pyridoxal 5 phosphate (activated B6) 50 mg
- Now Foods Super Primrose 1300mg: Evening Primrose Oil (Oenothera blennis) (Seed) 1.3 g (1300 mg) – 120 count. GLA is often low in pyroluria and EPO helps with zinc absorption and PMS symptoms.
- Designs for Health Twice Daily Multi:This is a good copper-free multi. It also contains Folates (NatureFolate™ blend) 400 mcg instead of folic acid (no DFH products contain folic acid).
(The Antianxiety Food Solution Amino Acid and Pyroluria Supplements (2015) by Trudy Scott www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Pyrolurics also have a greater than normal need for arachidonic acid (found in eggs, butter, red meat and liver) and the essential fatty acid GLA (gamma linolenic acid found in supplements like black currant seed oil and evening primrose oil). This accompanied by a nutritional program will see the symptoms abate in mild cases very rapidly or several weeks to months on a gradual basis. The symptoms can recur if the program is stopped so the need for treatment is indefinite. It is wise to seek the advice of a practitioner who has undertaken training at Outreach Programs led by Dr. Walsh in Vitamin therapies according to Professor Pfeiffer's protocols. Some people diagnose themselves or their children, by symptoms only. But it carries the inherent risk of embarking on a type of treatment involving the masking some other disorder. For an international list of doctors through Bio Balance Health that follow the proper protocols go here: http://www.biobalance.org.au/patients/find-practitioners