Compiled: 18 November 2011 | Revised 2018.
IMPORTANT NOTE: The content provided here is purely for information purposes only, intended to act as a guide to possible future treatment. It should not, in any way, be construed as or relied upon as advice, instruction or direction to follow a particular course of treatment; it is merely a guide. It does not replace or substitute professional consultation with a qualified medical, mental health or alternative healthcare practitioner. Please ensure that you consult with your own appropriate healthcare professional before embarking upon or adjusting your treatment in light of anything contained in this document, and always ensure your treatment remains under the care and supervision of a qualified healthcare practitioner.
Please understand, this document is designed to prompt you to take responsibility to investigate deeper into the true underlying cause of your health issues and to partner with a suitable healthcare professional in the interest of improving your overall health and wellbeing. Your healthcare professional will most likely include a qualified and registered physician as well as allied practitioners, including naturopaths, kinesiologists, chiropractors or other professionals who may be able to assist in customising and tailoring treatment protocols to your suit your individual or unique biochemistry.
(1) So, what is Pyroluria?
Answer: According to Dr. Kerry Harris (as reported on 21 July 2011):
“Pyrrole disorder is genetic – an inherited increase in the amount of haemopyrroles in the blood leading to loss of B6 and Zinc. You can have an induced high level of pyrroles in the urine as a result of extreme stress or illness but this is usually transient and improves when the body it healthy. All pyrroles have very low zinc, so they often have the sequelae of low zinc too. Low stomach acid – poor digestion, poor absorption, gut problems, dysbiosis, heavy metal accumulation (including iron overload). The pyrrole level in the blood should go down with treatment. But I usually use clinical signs to let me know that my patients are doing well…”
Dr Harris noted again on 17 August 2011 that:
“Pyrrole disorder is certainly genetic. But there are people who develop the symptoms of pyrrole disorder when they have very low B6 and Zinc. So their problem is more epigenetic. People with a pyrrole disorder tend to have lots of food intolerances – so removing the foods they commonly eat will relieve them of the burden of these symptoms – but the underlying problems – or urinating out large quantities of B6 and Zinc – remains”.
Further, in relation to Pyroluria and food intolerances, Dr. Harris remarked on 18 August 2011 the following:
“… taking zinc and B6 is important if you are a pyrrole, but in significantly large quantities than a person without it. If you haven’t had ‘real depression’ or significant anger issue it is possible that you don’t have a pyrrole disorder (or a mild case)… people with low zinc often have food intolerances – and it’s great to avoid the foods you always eat – it’s called an oligo diet – usually means no gluten, no diary, no eggs, no soy, and these are the commonest allergens. Most people feel better when they remove these foods”. (Note: On 25 September 2011, Dr. Harris also stated that “Sulphur sensitivity can be due to a lack of Molybdenum (which is often low because of higher copper)”.
Lastly, it is pointed out that Dr. Harris said on 19 September 2011 that:
“… treating pyrrole disorder has never been treated with medicines. It has always been treated biochemically – with vitamins, minerals and essential fatty acids… the symptoms are totally reversible when you take the supplements to correct the biochemical imbalance”.
(2) How do I know if I might have Pyroluria or any related issues like under or over-methylation, high copper or other problems?
Answer: Get tested! There are a range of blood and urine tests available, and specialist health professionals who can order the tests. A qualified professional does not rely solely on testing to ascertain whether someone has pyroluria as testing may not be conclusive in borderline cases and other times, patient history and family lineage may assist in making the diagnosis.
1. Urine Test: Urinary Kryptopyrroles (KPU). This test is performed by Applied Analytical Labs (07-3133-0765) OR Safe Labs in Australia, and can be ordered through most standard pathology testing services, who in turn follow strict protocols for the collection and transport of samples to Safe Labs. It is advised that you seek out a lab approved by Dr. Bill Walsh as revealed on the website with URL www.biobalance.org.au
Note: The results from KPU testing how general figures that reveal the following:
10-20 (borderline pyroluric)
20 or higher (strong positive for pyroluria)
Testing Procedure: Please be aware the testing protocols for the collection of urine samples are deliberately strict to prevent the loss of KPU, which perishes quickly at room temperature and if exposed to bright light. As such, provision of a sample usually takes places in near dark conditions, while being wrapped in aluminium foil then immediately placed on dry ice for preservation during transport to the relevant laboratory.
2. Other Important & Related Blood Tests:
- Serum Copper (Cu): This enables one to determine potential copper toxicity. (Note: According to Dr. Kerry Harris, protocols advise that Serum Copper levels be maintained in the physiological range of 80 to 110 – Reported 21 July 2011);
- Plasma Zinc (Zn): This enables one to ascertain the level of zinc and to determine the ratio to copper as to the overall general health and wellbeing of the person. (Note: According to Dr. Kerry Harris, protocols advise that Plasma Zinc levels be maintained in the optimal level range of 14-20 while aiming for around 19 for the best impact or effect – Reported 21 July 2011);
- Ceruloplasmin: This assists in ascertaining whether the level of ‘free’ copper in the body is at acceptable or high levels. (Note: According to Dr. Kerry Harris, protocols advise that free copper levels float in the range of 10 to 15% – Reported 21 July 20011. Indeed, on October 7th, 2011, Dr. Kerry Harris stated that a “free copper of over 20% is a bit high, and a zinc to copper ratio where the Cu (Copper) is higher than the Zn (Zinc) is a concern”. That said, though, Dr. Kerry Harris also advises that if someone is afflicted with cancer then those free copper levels need to be even lower, in the vicinity of around “5%” (Reported 7 October 2011); and
- Whole Blood Histamine: This test may assist in revealing whether a person has potential over-or-under-methylation issues. (Note: Generally, persons with a histamine reading of greater than 0.45 are considered to be under-methylators whereas those with a histamine level of less than 0.40 will be over-methylators. The ranges, according to Dr. Kerry Harris are deliberately narrow and strict as the impact of histamine on the body is quite potent.)
(2) Will other tests be ordered to see what is occurring in my body?
Answer: In all likelihood, in order to gain a comprehensive and more complete picture of the total situation, your health professional may order such other tests as are necessary to determine what is occurring in your body. Such tests may include, without limitation:
(a) blood tests to measure certain levels of vitamins, minerals, thyroid and liver
(b) hair analysis testing to ascertain any heavy metals or toxins in your body;
(c) stool analysis to screen for parasites, bacteria, mould, etc; and
(d) DNA profiling and testing for gene variants to check mutations or polymorphisms that may impact the biochemical pathways or ability of the body to utilise your supplements can be extremely beneficial. The testing of SNP’s (or Single Nucleotide Polymorphisms) can provide revealing information to help personalise supplements. Testing a panel of SNP’s can mean useful information provided on around 10,000 SNP’s in the body that help to chart the course of accurate treatment for an individual. For instance, on November 12, 2011, Dr. Kerry Harris remarked that the presence of a certain SNP “may show that a person can’t recycle their B12 to use over and so they will need up to 10 times the amount that other people require – which is common in chronic fatigue”. Further, Dr. Kerry Harris has stated that the chance of having an SNP depends on whether your parents had one or not, and then it’s a 50% chance of inheriting it from either parent. (Reported 13 November 2011). And finally, the importance of B12 is underscored by the fact that Dr. Kerry Harris noted that B12 can “make your nerves more robust and quicker to heal after an insult”. (Reported 15 November 2011).
Note: Please bear in mind most socialised medicine or healthcare systems (like Medicare in Australia) do not subsidise or reimburse any portion of the testing costs charged for such testing procedures. They are billed privately and paid fully by the patient. Some tests, for instance, a Complete Digestive Stool Analysis (CDSA) can be partly recovered by the patient if ordered by your doctor.
(3) What kind of issues can a deficiency in B6 and Zinc cause?
Answer: It has been reported that the chronic depletion of B6 and Zinc can cause a vast array of distressing and debilitating symptoms, as are detailed further below.
(4) What is the list of commonly reported symptoms and issues related to the condition of pyroluria, methylation and high copper?
Answer: While the list of possible symptoms and conditions that may emanate from pyroluria and associated issues is by no means exhaustive or conclusive, it does provide a comprehensive indication of the kinds of issues that may arise. Naturopath Helen Janneson-Bense has reported that the following issues are possible:
Possible Symptoms: Anxiety, nervousness, pronounced mood swings, low stress tolerance, depression, panic attacks, motion sickness, general loss of appetite, social withdrawal, memory loss, episodic anger/temper outbursts, severe inner tension, insomnia, seizures, tremors, migraines, acne, irregular menstruation, impotence in males, disordered perception, eosinophilia, dyslexia, hallucinations, delusions, paranoia, loss of reality, increased sensitivity/intolerance to sound, light, smell and touch, frequent unexplained nausea, joint pain – specifically knee/leg pain, restless leg syndrome, fatigue, poor dream recall, stitch in side, digestive disturbances, (abdominal tenderness, constipation) irritable bowel syndrome, gluten intolerance, glucose intolerance/hypoglycaemia, anaemia, food/environmental allergies, delayed onset of puberty, suicidal tendencies, sensitivity to medications, pessimism, hyperactivity, emotional lability.
Possible Conditions: Schizophrenia, Bipolar Disorder, Depression, ADHD, Alcoholism, Autism, Dissociative Identity Disorder, Epilepsy, Aspergers, Obsessive Compulsive Disorder (OCD), Multiple Sclerosis, Parkinson’s Disease, Lyme Disease.
(5) Are there a cluster of general symptoms that might also reveal that pyroluria is present?
Answer: Yes. Some things that could reveal the presence of pyroluria includes each or any of the following:
- White flecks or white spots on your fingernails
- Lines or ridges on your nails.
- Goosebumps or raise skin follicular marks on your upper arms.
- A long second toe, almost as long as your big toe.
- Not feeling hungry for breakfast or a tendency to avoid breakfast
- Crowded teeth
- Anxiety, panic disorder or social withdrawal
- Nervous habits
- Alcoholism or alcoholic tendency
- Possible experience of a ‘stitch’ in your side when you ran as a child
- Scoliosis or kyphosis of the spine
- Persistent or lingering melancholy or depression
- Lowered functioning ability
- Lowered or loss of libido
- Discomfort or dislike of loud noises
- Food allergies, intolerances or sensitivities
- Difficulty falling asleep, broken sleep, insufficient sleep or general insomnia
- Dry, scaly, irritated or flaky skin, rosacea, or skin problems
- Creaking knees or joints, particular when you crouch down or bend
- Headaches or migraines
- Inability to recall dreams
- Reduced ability to tolerate disharmony, conflict or confrontation
- Delayed onset of puberty and/or reduced or little libido
- Food allergies, intolerances or sensitivities
- Tendency to isolate, avoid socialising to minimise stress
- Over-sensitivity to stress or emotions
- Fatigue, lethargy or exhaustion
- Muscle and/or joint pain
- Prone to irritability and frustration
- Memory impairment or loss
- Accumulation of weight (or easily put on weight), especially around mid-region
- Auditory or visual hallucinations
- Possible dark circles under the eyes (suggesting possible food intolerances)
- Crying easily and/or excessively
- Tendency to anger or rage, or having a temper, or agitation
- Indication of mental health issues in your family tree
- Disliking the sound of other people ‘chewing’
- Sensitivity to fabrics or tags on clothing
- History of drug or alcohol abuse
- Uncontrollable or paralysing fear or terror
- Presence or intermittent or continuing phobias
- Possible sensitivity to certain fluorescent lights and/or electromagnetic radiation
- Cold hands and/or feet, even during summer, at times
- Pale skin with possible easy ability to burn
- Onset of nausea, particularly in the morning
(The above list of possible symptoms has been reproduced here with the permission of Helen Janneson-Bense and Dr. Kerry Harris and is based on information gained from symptoms exhibited from patients in their practice, affected by this condition)
In relation to the mental, emotional and physical symptoms, it could be said that they can be incredibly debilitating and highly disturbing. Many, many people with pyroluria report a range of distressing symptoms that improve remarkably once treatment is embraced and maintained. Focusing on labels like ‘illness’ and ‘condition’ are rarely helpful and can prove to be major stumbling blocks. Yet, if we focus on addressing symptoms and working to resolve them that can be a far more helpful and a positive point of focus. To enjoy a remission of symptoms in a sustained or lasting way can be a very empowering and healing journey.
(6) As a general rule, if diagnosed with Pyroluria, what are the general protocols or health regime for treatment:
- DIET: Alter diet and lifestyle, to enable healing to occur, as discussed below
- GUT HEALTH: Perform relevant tests, and undertake treatment to heal the gut.
- SUPPLEMENTS: Take the supplements recommended by your practitioner.
- MANAGE STRESS: Take care of yourself, keep stress levels in-check.
PLEASE NOTE: The significance of diet and food choices cannot be underestimated or ignored. Diet is a paramount if not overriding consideration for any person who suspects food intolerances of any kind or indeed for anyone with pyroluria. It is most common for persons with pyroluria to react or have sensitivity to a variety of foods. It varies from individual to individual. Some people tolerate a wide palette of foods, whereas others due to compromised digestion and heavy metal toxicity have severe limitation on the range and type of foods they may consume. For instance, some may need to go lactose-free, casein-free, gluten free, low starch foods whereas others may need to abstain from high phenol foods or foods with amines and/or salicylates. Depending on the severity and your intolerances, you may need to embrace a GAPS Diet, or the FailSafe Diet or a Paleo Diet.
Eating the foods you enjoy and finding a happy medium is key, while ensuring your health is not unduly compromised. For many, it seems, embracing a Gluten-Free, Dairy-Free, Grain-Free and ultimately, largely Sugar-Free diet can have a profoundly beneficial impact on one’s health and make substantial inroads towards your healing.
On October 2nd, 2011, Dr. Kerry Harris noted that:
“Cutting out sugar is vital, and low carb (specifically getting rid of grains) is really important. Eating clean protein sources (i.e. meat, fish, chicken, eggs, etc) every meal, lots of good veggies, nuts and sees – but limiting grains seems to be the best total diet. That fits with most of the programs that seem to help. If you are salicylate sensitive – am many low zinc people are – then obviously you avoid salicylates while are you building up that zinc level. Same for glutamate, amine, nightshade sensitivity, etc… vegan and vegetarian diets are challenging; it is not possible to get all the nutrients you need for normal metabolism let alone a fault one (like ours). They lack protein, zinc, folate, B12 and omega 3’s. Pyrroles do much better on a good amount of animal protein and vegetables… It’s a myth that you get good calcium from dairy – you get great calcium from fish, broccoli, nuts, etc. No other animal on earth has milk past weaning – so it cannot be essential for humans either”.
Additionally, on 18 November 2011, Dr. Kerry Harris noted that a “strict no sugar diet would also exclude high levels of fructose but I generally suggest that people are OK on low fructose fruits, like berries, plums, etc but some are more sensitive. One golden rule – never drink your sugar – no fruit juices, no soft drinks, etc. When people are coming off a high sugar diet, you need to reduce the amount in a sensible way – cut out sucrose, then the refined carbohydrates, then whole meal carbs, high fructose fruits, etc – that way you should feel fine”.
Further, Naturopath, Helen Janneson-Bense has noted that the elimination of grains from one’s diet can have a positive impact on normalising gut reactions and assisting in the improvement of mental health. In mentioning the impact of high copper levels, Helen stated (on September 24th, 2011) that “such levels leave you more prone to gut infection – high copper creates a perfect breeding ground for parasites and yeast overgrowth leading to fungi/leaky gut syndrome and food intolerances, leading to more yeast and toxic metabolites and round and round it goes. Zinc is vital for gut lining stability and as most would now, keeping copper levels at bay. High copper is why we see so many pyroluric patients with yeast issues and parasites, etc. Not only low zinc but stress itself, especially long-term stress increases copper retention through excessive aldosterone production. Copper also interferes with thyroid hormone productions resulting in low T3 and high RT3, not to mention oestrogen. It goes on and on… bottom line, treat the gut (probiotics, glutamine, DGL, anti-parasitics/anti-fungals), address the diet (eliminate food allergies, sugar, alcohol, caffeine) and manage stress through lifestyle changes… this way you preserve, utilise and maximise the supplements you are taking…”
Keep In Mind: Dr. Kerry Harris has noted (on 14 November 2011) that a ‘Herxheimer reaction’ or ‘Herxing’ for short, can typically occur about “2 to 3 days following a change of diet or adjustment to supplements that causes a die-off of bugs in the bowel. During that process you may or will feel very unwell until it passes and then you feel great”.
(7) How do I know how much B6 to take?
Answer: Assuming you have pyroluria, and this has been confirmed through testing or visiting upon a health professional, then they will inform you of the correct dosage and amounts of B6 based on the whether your pyroluria is mild, moderate or severe in conjunction with your weight and other protocols. However, that said, it is also known that supplementation is often raised until such time as patients report being able to ‘recall their dreams’ upon waking, and in the event that nightmares occur, then it is said that further lifts in B6 may be required until biochemistry levels out.
According to Dr. Kerry Harris:
“When someone has very low serotonin or very low B6 there is absolutely no dream recall. When the levels are low there is awareness of dreams but no details. As the level goes up the amount of the recall increases, and the quality of the dreams improves too – low B6 people can have nightmares or anxiety provoking dreams… When the levels are good your dream recall will be good – details, colour, lots of recall, and happy. When you are taking too much – your dreams become ‘trippy’ seriously, you’ll know them when you experience them – and unfortunately they will be burned into your memory forever…” (Reported 17 August 2011)
(8) What form of B6 will I be given?
Answer: This is important. Some people react poorly to standard B6 or otherwise their body may not be able to convert it to the much needed active form of B6 (known as P5P). As such, depending on your practitioner, they may hedge their bets and prescribe both forms and over time work to provide only one that best serves your needs.
(9) Will I be taking the standard over-the-counter Zinc?
Answer: Generally, no. The zinc that is most likely to be prescribed is zinc picolinate due to the heightening ability of the body to absorb this particular form of zinc. That said, certain people with severe intolerances may be given other forms of zinc to ensure proper absorption.
According to Dr. Kerry Harris, as a general rule, she has stated that “pyrroles don’t normally get overloaded with zinc. I usually start people off on about 75 grams for a 70 kilogram person with moderate pyrroles”. (Reported 21 July 2011).
Note: Dr. Kerry Harris has stated (on 16 November 2011) that it can take around 7 days for casein to leave the body system, and likewise it can take somewhere around 4 days for gluten to leave the system, so look out for differing reactions anywhere between the 4th to 7th day mark in order to see how your body responds as a marker to what is occurring from an allergy, tolerance and sensitivity standpoint.
(10) Will I need to remove certain heavy metals, like copper?
Answer: Your blood tests will reveal the blood copper levels in your system (Serum Copper) as well as the amount of ‘free’ copper, through the interplay of Serum Copper and Ceruloplasmin. Sometimes, your blood copper levels may be low yet mask the fact that your overall copper levels in body tissues is actually quite high. Hence why finding out about your ‘free’ copper levels is crucial.
If your levels are high, and it varies from person to person, then, you may be supplemented orally with Molybdenum to help chelate copper, and restore a more healthy balanced ratio of Zinc to Copper.
For more information on copper toxicity, please read this article by Dr. Wilson:
On October 3, 2011, Dr. Kerry Harris stated that:
“If you are having mercury issues – the first thing you can do is take high doses of zinc or metallothionine primer. If you tolerate sulphur, then DMSA is great. Good old-fashioned coriander helps get rid of Hg (mercury) too. If your levels aren’t coming down, then get your Apolipoprotein E genotype checked. If it is E4/E4, then you will need help with chelation, if it is anything else, the chances are that you will be able to chelate it yourself over time… whilst I have to say that I will always use DMSA, DMPS or EDTA as a preference (because I can) I have seen great results when naturopaths use sulphur-based detox compounds, even homeopathic drops and liver support… The body has it’s own priority list for chelation of metals – when you use metallothionine to chelate your metals you have to wait for the body to decide which ones it will remove (Molybdenum is more specific to copper). I can’t remember the order – but I remember that aluminium is very late… we just keep plugging away, and one day the zinc levels start to rise, the copper starts to drop, the stomach acid starts rising and any salicylate sensitivity reduces and then we can really get moving. It just takes time… but have noticed (with frustration) that when we are trying to chelate Al (Aluminium), we see Pb (Lead), and we see Hg (Mercury), and Cu (Copper), and As (Arsenic), even Sb (Antimony), while we are waiting for the Al (Aluminium) to come out, eventually we see it and then we all breath a sigh of relief”.
(11) How to take supplements?
Answer: In the dosages and times, and of the kind as has been directed by your health practitioner. Yet, often with supplementation, you need to listen to and observe the reactions of your body. Doing so will assist in finding the optimum time to take your supplements, and sometimes this can be a trial-and-error process, as far as possible, be patient. (For instance, taking B6 late in the afternoon may be too stimulating for some and therefore impact on sleep.) Generally though, most people taking them all together on waking (as zinc, for instance, is required for the absorption and activation of B6), whereas others who cannot tolerate them together split doses at other times of the day. Often, taking them with a substantial portion of food may be necessary to tolerate the large doses at first or to minimise any possible nausea that may arise.
Note: It is said that zinc is necessary for the absorption and activation of B6
(12) Is there any other way to take supplements other than orally ingesting them?
Answer: Yes, in some cases, people with highly compromised digestive systems or who endure serious reactions to supplements, as well as certain children, can have the supplements made into a cream to be applied topically for transdermal absorptions. Dr. Kerry Harris notes that while this can be arrange through your compounding pharmacist and it is effective, it can also be quite expensive.
(13) What does a typical, basic daily supplementation look like for a pyrrole?
Answer: As a very rough guide and skeletal overview, the following supplements for a pyrrole are common (but note that tweaking is definitely needed depending on severity of condition, weight of patient and other issues like copper, methylation, etc and so forth):
- Zinc Picolinate: 50mg per day, and upwards to 75mg or 100mg as applicable
- B6: 250mg per day, and upwards to 500mg as applicable.
- P5P: 50mg per day, and upwards to 75mg or 80mg as appropriate.
- Biotin: 1,000mcg per day, and upwards to 1,500mcg daily as appropriate.
- Vitamin C: 2,000mg starting dose, increasing to 4000mg daily.
- Evening Primrose Oil: 4,000mg daily (to give 4 grams of GLA)
- Magnesium: approx 750mg (for a 70kg person) daily, and upwards as applies.
- Vitamin E: 100mg (TBC)
- Vitamin A: TBA
- Molybdenum: 1,000mcg (only if copper toxicity or heavy metals are present)
ADDITIONALLY, you may need to add other possible supplements or medications to:
- support the chelation of any heavy metals (as appropriate);
- address any methylation issues (through the use of Methionine or SAMe for under-methylators, and for over-methylators then the intake of folate, B3, B12, etc);
- bolster and support adrenal function;
- aid the correct functioning of your thyroid;
- support the liver through taking such things as St Mary’s (Milk) Thistle (to obtain the key ingredient of Silymarin) of 1000-1200mg per day, and certain other supplements like L-Carnitine; and
- healing of the gut through taking Glucosamine (4000mg) and Glutamine (if tolerated well by patient, then 4800mg) and DGL to heal gut lining and support gut health.
Note (1): Calcium is also considered important for pyrroles. However, according to Dr. Kerry Harris the typical Australian diet is sufficiently abundant in calcium as derived from many sources, so additional supplementation is not considered necessary.
Note (2): As your zinc levels rise (or otherwise in order to enable the body to remove heavy metals) you may be placed on a particular formula known as a ‘Primer’ or ‘Promoter’, which has as its purpose to boost metallothionine production in the body. The formula, as developed by Dr. Bill Walsh, contains such supplements as include: Glutathione, Selenium, Serine, Lysine, Alanine, Glycine, Threonine, Proline, Aspartic Acid, Asparagine, Glutamic Acid, Methionine, Glutamine, Isoleucine. According to Dr. Kerry Harris (as reported on November 8th, 2011) the Promoter formula “gets ride of metals… useful if you have high copper, lead, mercury, etc…”.
(14) What about methylation, I don’t really understand it?
Answer: According to Dr. Kerry Harris your “methylation status is a measure of the rate of the methylation cycle – the conversion of homocysteine to methionine. If it is low then we say that the person is under-methylating – used to be called histadelia as one of the markers of under-methylation is high histamine levels. Over-methylation was called histapaenia – as they have low histamine levels. It is a completely different area of your biochemistry than pyrroles. So you most definitely can be an under- or over-methylating pyrrole. It does involve correction with supplements, and although some are the same as for pyrroles, some are different”. Reported 31 July 2011. In basic words, Dr. Kerry Harris has remarked that “over-methylators have the methylation cycle going too quickly, and under-methylators have the methylation cycle going too slow. They have very different symptoms, and although it is not perfect, the test we use is a Whole Blood Histamine”.
(Reported on 11 November 2011)
(15) What is a good basis or starting point for the treatment of someone who is a under-methylating pyrrole?
According to Dr. Kerry Harris (on 17 August 2011), it is noted that:
“The order for treatment really depends on the severity of the symptoms. Try to start my histadelic pyrroles on the right stuff for both. I start with moderate zinc, B6 and Magnesium, add biotin, vitamin C and E etc and then increase the zinc and B6 to the pyrrole level. I would also consider Evening Primrose Oil if they are having mental health issues and hold the fish oil for a while (that can be reintroduced later)… If they are very depressed then I will happily given them SAMe or methionine at the same – and avoid all folate”.
Further, on 1 October 2011, Dr. Kerry Harris noted: “I don’t think folate is recommended for anyone who is histadelic – it blocks the serotonin in the synapse. However, if they are clinically very low in folate, or they have very high homocysteine then I will give them a very small amount – sometimes only weekly. If their depression or anxiety gets worse, then we stop it”.
(16) As an under-methylator, am I at risk of adrenal fatigue?
Answer: In short, yes! According to Dr. Kerry Harris under-methylators are at risk of adrenal fatigue and for that read they may need to have their “cortisol levels checked. Saliva cortisol testing – done at 9am, noon, 4pm and 10pm – lets you draw up a curve that represents your adrenal function (or lack of it). These people are typically caffeine and carb dependent – foggy brain – wake up tired, but wake up at 3-5am most nights, and need a nanna nap in the late afternoon. They are usually freezing cold, have cold hands and feet, dry skin and hair, and no sex drive (cause their hormones are totally out of whack)”. Reported 30 July 2011.
Indeed, as Dr. Kerry Harris says “you can have chronic fatigue syndrome (CFS) and adrenal fatigue (AF) at the same time. In fact, all my CFS patients have AF. Cortisol levels can be normal in phase 2 of adrenal fatigue but the DHEA and progesterone levels are usually low…” Reported 31 July 2011
Further, Dr. Kerry Harris contends that it may be important to ascertain B12 levels. According to Dr. Harris “if the folate levels are high on the blood test, but the mean cell volume (size) of the red blood cells is high too – it means you can absorb the folate but note use it, so I go look for MTHDR. You can ask for it – it is just a blood test. In men, these people often have a high homocysteine too, but I don’t often find ti in women.” Reported 31 July 2011.
(17) How about if I am an over-methylating pyrrole?
Answer: As a general rule, an over-methylating pyrrole requires those things which an under-methylating pyrrole is directed to abstain from, most notably, folate and to be taken in large amounts. For an over-methylating pyrrole it is suggested that supplementation consist of using folate in the active form, known as, folinic acid, as well as the taking of B12, preferably in sublingual form. Further vitamin and mineral supplements may be required, including vitamin B3, manganese and potentially omega-3 oils to name a few.
(18) Taking supplements is one thing, ensuring that you absorb them is another. What do I do to enhance or help to ensure that I am absorbing my supplements?
Answer: Generally, as previously noted, the digestive or gut health of persons with pyroluria is compromised. This is largely attributed to the action of stress on the gut but also the weakness that arises to one’s various systems due to the absence of zinc. Relatedly, pyrolurics tend to have low stomach acid. As such, supplementation through the addition of digestive enzymes can be helpful in raising stomach acid levels and improving digestion and absorption of your supplements. As a basic guide, purchasing the basic enzymes of Betaine HCI and Pepsin is a good start. (Note: Dr Kerry Harris has remarked that the “commonest link between pyrrole disorder and B12 is that most pyrroles lack stomach acid and this is an integral part of the absorptions of B12 from food. When someone has severe low stomach acid, the t often self selects against the meat because ti becomes too hard to digest – so they become even more B12 deficient”. (Reported 12 November 2011)
Dr. Kerry Harris has stated the following:
“Pyrroles have low zinc and B6 and it takes zinc and magnesium (and a few other little goodies) to make stomach acid. So nearly all pyrroles are low in stomach acid. Low stomach acid gives symptoms of reflux, indigestion, feel too full after eating and undigested food visible in the stool. Betaine HCI would be a great idea, others try lemon juice or apple cider vinegar. I find betaine the mos efficient”. (Reported on 13 September 2011)
(Note: If you have a stomach ulcer that is H-pylori positive, then Dr. Harris recommends treating it first before taking digestive enzymes and simply having lemon juice in the meantime, as Betaine HCI can cause considerable pain on an ulcer).
Dr. Harris further noted on 30 September 2011 that:
“Many patients have hug problems with absorption – especially those with low zinc… stomach acid support with Betaine HCI with meals and with supplements. That helps with absorption. Also suggest a Complete Digestive Stool Analysis to check for dysbiosis and parasites, etc. Candida can cause problems with absorption too – they Loooooooove Zinc too”.
Also, October 9th, 2011, Dr. Kerry Harris noted the following:
“Taking the Betaine HCI won’t make you dependent on it – in fact, it will help you build the levels up faster. If you have low HCI you can’t absorb zinc, magnesium, B12, etc very easily from the food and it also triggers the alkaline response in the bowel which then triggers peristalsis, gall bladder function and pancreatic enzyme activate – isn’t it wonderful how it all works!… If you get low zinc and magnesium then you will have trouble making stomach acid – and then you can’t absorb your zinc and magnesium – and so it goes. If you take the Betaine HCI supplement it will increase the absorption of nutrients from the food, including the magnesium and zinc, and enable you to build up your levels to the point that you make enough of your own stomach acid not to need the HCI. If you don’t want to supplement it with Betaine HCI then try lemon juice or apple cider vinegar, you can build up the levels yourself as long as you continuously build up your zinc levels and take an activated form to assist the absorption”.
(19) Should I be taking appropriate probiotics?
Answer: Yes, they need to be taken daily. Recommended products consist of VSL#3 and Bio Ceuticals Ultra Biotic 45. That said however, Dr. Kerry Harris noted on 23 October 2011, as follows:
“I prescribe them specifically after finding out what beneficial bacteria is lacking in the gut. I like Ultrabiotic 45 for lactobacillis and bifidobacter (and it has a small amount of others too). I use Symbiotique in people who have VERY low bifido, and I use Mutafor if they need E.coli.”.
(20) What to do with sugar cravings?
Answer: Sugar cravings could be a sign of Candida, which is common when there is compromised digestion. According to Dr. Kerry Harris (22 September 2011) “… Chromium is really useful if you are used to eating a lot of sugar and it can help you break the cycle. I only treat Candida if I actually see it on a Complete Digestive Stool Analysis (CDSA) – and then I usually use Nilstat it is limited to the gut. You might want to try Costate – it’s a strong Artemesia’s mix if you’re looking for something more natural”.
NOTE: On 22 September 2011, Dr. Harris also noted that: “I get told by my many patients that they have Candida because they have a coated tongue – but that often means a liver issue or a dysbiosis – wrong proportion of bugs in the bowel, not Candida. Women often tell me that they have vaginal Candida when they really mean they have an itchy discharge – very different. And it’s expensive to keep buying anti-fungals, especially when you don’t need them.”.
Lastly, on 30 September Dr. Harris also quipped that “apparently low zinc predisposes you to rapid drops in blood sugar after eating carbs, so most pyrroles get carb cravings and their moods are affected by the swinging sugars. I avoid simple sugars as much as is practical…”.
(21) My anxiety is acute, and I have difficulty sleeping, what to do?
NOTE: Please consult with a qualified medical or alternative health professional before undertaking any new regime or commencing any treatment.
Answer: Some people report that the use of 5-HTP, and GABA and/or Melatonin trouches is helpful with addressing these issues. Others have used L-Tryptophan or simply high doses of magnesium. Magnesium is a staple supplement in the life of a pyroluric for an adult who weighs up to 75kg the amount of magnesium required is up to 750mg per day. Additionally, having a solid and good diet is the cornerstone of good health so if sleeping is difficult due to racing or crowding thoughts then it has been suggested that high histamine levels may compound the situation and as such a low histamine diet is recommended.
Caution: According to Dr. Kerry Harris though, one may need to be careful about the use of GABA as taking it alone may have no effect. Indeed, Dr. Kerry Harris stated the following:
“If you take GABA it may not get through the Blood Brain Barrier, but if you take glutamine and P5P it should help. On the other hand, if you are VERY low in P5P, the glutamine will not convert to GABA and it will become glutamate – and that’s a disaster. There are supplements called pre-GABA that can help, but some people find that when they take the GABA they do get an effect.” (Reported 27 September 2011)
Note: Glutamine is a calming neurotransmitter whereas Glutamate is an excitatory neurotoxin.
Additionally, in respect of sleep disturbances and issues, Dr. Kerry Harris has noted that:
“It won’t get better while there is a lack of B6, Zinc, an excess of copper or other Heavy Metals (HM), too much or too little cortisol, too much or too little serotonin or dopamine and too little melatonin. Unfortunately, there are no guarantees that it will be great when all those things are perfect – but you’ve got a better chance of sleeping better when they are all fixed up…” (Reported on 8 November 2011).
As well, Dr. Harris noted that one of her patients “bought a magnetic (plugged in) undersheet and that was when she started sleeping better. It is important to make sure that your bed isn’t in an area with high EMR (or Electro-Magnetic Radiation). Find our where your meter box is – if it is behind the bedroom wall, try sleeping in another room with no electronic equipment in it at all…” (Reported on 9 November 2011).
Finally, as a last resort, it was noted that if you need sleep and it is chronic you may need to speak seriously to your doctor about appropriate medication. As Dr. Kerry Harris put it on 9 November 2011, “… If you need a sleeping tablet – then you take a sleeping tablet. The trick is to find one that works for you. Temazepam is the simplest – but it is a benzodiazepine and not that great for under-methylators. Some of the older anti-histamines are sedating, and great for under-methylators. The newer ones like Zolpidem are unusual. Some of my patients get great refreshing sleep from them – some get stimulation from them (especially the CFS patients)”.
(22) My oestrogen levels are high, how does that potentially affect me with this condition?
Answer: According to Dr. Kerry Harris “people who have very high oestrogen levels hold onto copper more than other people. It takes zinc and molybdenum to get rid of copper. Pyrroles are low in zinc so they can’t get rid of it, so the molybdenum, gets depleted trying to lower the copper levels – and one of the symptoms of extremely low molybdenum is sulphur sensitivity. So… keep taking the zinc as much as you can tolerate it, and add molybdenum (around 1,000mcg daily) and see how that does. It is important to make sure that your liver can metabolise all the oestrogen safely. St Mary’s Thistle is very helpful, as is I3C and DIM. And you get your bowel in order to reduce the bound oestrogen being released back into the body. There is great urinary metabolites test which will test whether your body is converting the E2 into 2-OH, 4-OH or 16-OH oestrone, and that has an impact on your risk of cancer, and all of this impacts on your adrenals…” (Reported on 8 September 2011)
(23) My skin is really dry or irritated?
This is quite a common experience for pyrolurics. It related to the absence of both Essential Fatty Acids (EFA’s) and the need for Arachidonic Acid. Taking Evening Primrose Oil in the amount of 4 grams per day is the recommended protocol for treatment of skin. According to Dr. Kerry Harris (on 8 November 2011), “… Humans can usually make Arachidonic Acid (but we are defective!) so we need to make sure that we get it every day. AA is high in lamb and beef and seafood, and particularly in offal”.
(Caution: Note though, Dr. Kerry Harris stated quite explicitly on 11 November 2011 that she does “not prescribe omega 3’s to my patients – pyrroles generally do poorly on them”).
Additionally, Dr. Kerry Harris notes that pyrolurics tends to be more sensitive to skin irritants and further that “skin problems, like dermatitis, can be due to low zinc levels” (Reported 31 July 2011).
(24) Can you address the presence of obsessive compulsive disorder or OCD?
Answer: According to Dr. Kerry Harris, OCD usually indicates the patient is affected by under-methylation. This means that it is important for the patient in question to have their histamine levels checked. That said, Dr. Harris notes that “certain anti-psychotic and anti-depressant medication lowers the amount of histamine in the blood so the test shows ‘normal’ and that need to be taken into consideration when interpreting blood results.
Further, according to Dr. Kerry Harris, if someone has really high folate levels and yet there is still evidence of low folate activity (as revealed on a normal blood test through increase Mean Cell Volume of MCV) then this may be an indictor that the individual in question has an MTHFR problem. In this case, according to Dr. Harris folate could drive the person to be even more agitated and so such persons usually require 5’MTHF or Folinic Acid.
Note: According to Dr. Kerry Harris MTHFR is “basically an enzyme that activates folate… and if you have one or two common variants then you can’t activate folate as efficiently and despite having lots of it in your blood, you can’t use it… It’s like having a garage of fancy cars, but no car keys!”
MTHFR stands for Methylene Tetra Hydro Folate Reductase
(25) How does long-term stress and adrenal fatigue affect thyroid function?
Answer: According to Naturopath Helen Janneson-Bense “long term stress and adrenal fatigue is a major player in thyroid dysfunction. As long-term stress wear on the adrenals, copper retention leads to copper accumulation in the body. Basically, whenever our sympathetic nervous system switches on, or even stays on, we produce aldosterone, among other things. This causes a retention of copper and release of our calming nutrients – zinc, magnesium. It’s a necessary mechanism for survival. Though long-term, it causes major disruption. Loads of people now live in sympathetic mode and never switch off. So, after awhile the copper starts to build up in the body and so commonly in the thyroid gland, disrupting T4-T3 conversion, ultimately leading to a build-up of RT3, low T3 and subsequent symptoms of hypothyroid…” (Reported by Helen Janneson-Bense on 25 September 2011)
(26) Taking supplements continually, how important is it?
Answer: To someone with pyroluria and associated issues, taking supplements is as important as breathing, or indeed drinking water. Someone with diabetes or asthma always ensures they have their appropriate medication on hand to use immediately. Well, those with pyroluria are, in many respects, no different. Many, in order to function, and function well, need to ensure they take their supplements always, and on an ongoing basis. It has been reported that the cessation of supplements will see a return of symptoms within as little as 48 hours.
(27) Will I ever need to get re-tested?
As a general rule, no. According to Dr. Kerry Harris (on 16 November 2011) who states:
“I don’t retest unless the patient isn’t doing well on the doses they are on… If they are feeling fantastic and life is great – why make them pay another $130?. However, if there are still problems, I repeat the tests. It inevitably shows that we need to increase the B6 and Zinc”.
It is also of note that some patients may choose to outlay the money for testing again in order to see whether their levels have changed. Reportedly, as noted below, the taking of supplements will serve to lower the level of pyrroles in the body, which is excreted through the urine. That said, the level of pyrroles can fluctuate broadly, depending on a range of factors, most notably stress. Interestingly, Dr. Kerry Harris remarked on 30 October 2011, that some “of her patients had repeated [histamine level] tests and I have seen a dramatic reduction in histamine levels while they are on treatment”.
Note: There is some conjecture that certain testing or KPU is subject to false negatives from time to time, and further that the reliability of on whole blood histamine to measure methylation issues may not be conclusive. As such, re-testing may also occur in these situations in conjunction with relying on patient symptoms and clinical history.
(28) What about general chemical or environmental sensitivities?
Depending on the individual the degree of sensitivity to environmental factors can range from mild to severe. Naturally, it is recommended to avoid things that may cause an undue exposure to relevant chemicals or pollutants. As a pyrrole it may be relevant to observe your reaction to or purchase products that help as indicated below:
1) Artificial Lighting: Certain lights, namely fluoresecent lights may pose a problem for brief or extended periods. Replacement with halogen lights may be more conducive to your health.
2) Clean Air: Living in a place where clean air is abundant, is important in minimising the level of oxidative stress on the liver.
- Clean Water: Showering for shorter periods and at lower heat temperatures may be important to ensure that you not unduly additional copper from the water (or through inhalation from the steam) as most pipes in homes are made from copper. This may be relevant for those with high copper levels who are needing to reduce copper toxicity and exposure.
4) Daily Contactants & Personal Toiletries: Minimising your contact with obvious chemicals may be important and this can include such things as paints, but also more obviously ensuring chemical-free toothpastes, shampoos (and conditioners) and deodorants that contain absolutely no aluminium or other harsh or harmful substances. Dr. Kerry Harris notes that if you are having difficulty sourcing appropriate toothpaste “that using bicarbonate soda is an excellent alternative”. (Reported 8 November 2011)
(29) What about feeling good, when will that happen?
Answer: Well, according to Dr. Kerry Harris:
“Generally when a pyrrole starts on the supplements they feel great – as long as they can tolerate the supplements. If they also have high copper, then they can feel crap… Folate is another one of the B-group vitamins that can make under-methylators extremely agitated and anxious…” (Reported 31 July 2011)
“… You take the supplements for life – but when you feel great you really don’t want to go back to feeling angry and anxious all the time. It is better to have pure B6 and P5P rather than a mixture, but some mixtures are OK. Just try to avoid folate (if you are an under-methylator)… The copper (cu) can take a long time to get out of your body – at least 3-to-6 months, and it isn’t much fun, I’m afraid”. (Reported 31 July 2011)
“… when you are getting rid of the copper, you tend to get more of the copper symptoms that you already have – i.e. if you get migraine, then you r migraines will get worse; if you have anxiety, then your anxiety will get worse… The feeling of disorientation is common amongst under-methylators. It eventually gets better”. (Reported 31 July 2011)
Again, on 27 September 2011, Dr. Harris noted that “… under-methylators often have trouble switching off their minds – thoughts tend to go round and round. Copper makes it worse”.
Note: Dr. Kerry Harris states that the biggest sources of copper are found in chocolate and carob, and in some instances certain town water supplies have had copper added to it.
Lastly, it is particular note and interest, that Dr. Kerry Harris has found that once one’s “pyrroles get down to single figures (under 9) people feel a lot better”. (Reported on 30 October, 2011)
(30) There is a lot of conflicting and inconsistent information out there, it’s all too much?
Answer: It’s OK. What works for one, does not work for another. Pyroluria and related symptoms is a complex and rapidly growing area of medicine. There can, at times, be such an information overload that it can seem daunting if not overwhelming. Yet, bit by bit, slowly but surely things will being to make sense and indeed you will begin to join the dots and realise more and more how the principal if not chief issues revolve around improving the health of your gut and addressing the genetic metabolic issues of your liver.
(31) Are there any parting words?
Answer: PERSEVERE. NEVER EVER GIVE UP, NOT EVER! If you have been diagnosed with Pyroluria then persistence to ask questions, and perseverance to maintain the course of your treatment is absolutely vital. Over time, as you improve, the treatment will become second-nature and will be integrated seamlessly into your life.
You are your own best doctor. You know how your body works or is not working, you live in it and you feel it. Perseverance is vital because on the road to healing you may pass through all manner of roadblocks or hurdles, not least of which is a medical profession where very few doctors are aware of nor trained in detecting or treating this issue. This is slowly changing, but if who you see does not believe or support you in finding answers to your underlying health issues then keep searching and find a doctor, medical professional or naturopath who is trained and aware of pyroluria. They do exist and they can be found. In Australia, look to the website of www.acnem.org and also the Biobalance website of www.biobalance.org.au and for those overseas, the Pfeiffer Treatment Centre can be very helpful.
(32) Is there anything else I should know?
Answer: Yes, and this if most important. You are not crazy, you are not going mad. You just need to find the right help and keep working to address the underlying cause.
This is as much a process of loving and caring for yourself as it is about finding the right treatment. Hang in there, keep at it. It WILL get better. Finding the missing piece is key, and this is one of them. Good luck on your journey!
(33) Is there any books you believe could be of benefit to understand more?
Answer: Yes. The following is a list of useful books on the subject that may shed further light:
- “The Mood Cure” – Julia Ross
- “Healing Depression & Bi-Polar Without Drugs” – Gracelyn Glyucol
- “Depression Free Naturally” – Dr. Joan Matthews Larson, Ph.D
- “The Anti-Anxiety Food Solution” – Trudy Scott
- “Nutrition & Mental Illness” – Dr. Carl C. Pfeiffer, Ph.D, M.D.
- “The Secrets to Recovery from Mental Illness” – Linda Santini
- “Mental & Elemental Nutrients” – Dr. Carl C. Pfeiffer, Ph.D, M.D.
- “Nutrient Power” – Dr. Bill Walsh (Release Date Pending – Imminent)
Important Note: The healing process for pyrroles can seem long and winding for some where it feels you take several steps forward only to feel like your gains are eroded and you are sliding backwards. At times, the process of restoring order and health to you as a whole is a process and honouring that process may entail recruiting the assistance of other allied therapies and complementary modalities to support or quicken your recovery. You may at times need or feel drawn to rely on Chinese herbal medicine and acupuncture, massage, chiropractic, kinesiologists, allergy specialists, or other healers as you find ways to restore and heal not just physically but also emotionally and mentally from the turmoil arising and trauma inflicted from having compromised biochemistry. At all times, check in with yourself, seek expert guidance and do your research because what may work for some or a for a while may change as you improve and your needs adjust thereby requiring things to be reviewed as to their ongoing benefit and suitability in your healing process and health regime. As always, good luck and may you find the healing and answers that bring your optimum health and happiness, wellbeing and wellness!