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A Basic Definition of Pyrolle

Pyrrole Disorder is known by many different names including Pyroluria, Kryptopyrrole, Kryptopyrroluria, Pyrroluria, Mauve Factor and Hemepyrrole. It is a biochemical imbalance involving an abnormality in hemoglobin synthesis.

During the synthesis of hemoglobin in the body, waste products called kryptopyrroles are generated. Kryptopyrroles are normally excreted uneventfully. However, in those with pyroluria, kryptopyrroles bind very strongly to zinc, vitamin B6, and Omega 6 making them unavailable for use in the body. The kryptopyrroles are then excreted in the urine, taking these 3 important nutrients with them, which is a very big problem! These nutrients are critical for the functioning of your entire body and mind, including your digestion, immune system, cognitive functioning, and emotions. This appears to occur more readily when the individual encounters any sort of bodily stress, whether it be an illness, over-exertion, or mental/emotional stress.

Currently, research seems to indicate that it is an epigenetic condition that can be manifest purely through genetics or ‘acquired' through emotional stress and environmental influences (such as ‘leaky gut syndrome’ and the overuse of antibiotics) that trip the genes to manifest symptoms. At the moment there is a lot of discussion surrounding how it manifests – and it is of the typical which ‘came first' variety.  Does pyrrole disorder manifest because of the other conditions or do the other conditions manifest because of pyrrole?

Symptoms of Pyrrole

Symptoms of pyroluria may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (stress of any kind makes symptoms worse), digestive issues including digestion of meat, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity.

The really good news is that once diagnosed, pyroluria is very manageable. The bad news is that ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term. Without appropriate supplementation, symptoms tend to return again in a week or two.

Common symptoms of Pyrrole Disorder, Pyroluria

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Below is a list of symptoms associated with Pyroluria. It's unlikely you will have all symptoms, however, if you experience 15 or more of these, it is likely that you have Pyroluria. (I've put in bold the symptoms my children or I have experienced)

1. Little or no dream recall (B6)
2. White spots on fingernails (Zinc)
3. Poor morning appetite +/- tendency to skip breakfast (Zinc)
4. Morning nausea (B6)
5. Pale skin +/- poor tanning +/- burn easily in sun
6. Sensitivity to bright light (Zinc)
7. Hypersensitive to loud noises (Zinc)
8. Sensitivity to smells (Zinc)
9. Poor ability to cope with stress (Zinc and B6)
10. Mood swings or temper outbursts (Zinc)
11. Histrionic (dramatic, emotional) tendency (Zinc)
12. Argumentative/enjoy argument (Zinc)
13. New situations or changes in routine are particularly stressful (B6)
14. Much higher capability and alertness in the evening, compared to mornings (Zinc)
15. Poor memory (Zinc and B6)
16. Obesity or Abnormal body fat distribution – larger midsection (Zinc)
17. Belong to a family with a lot of look-alike sisters
18. Dry skin (B6)
19. Anxiousness or nervousness, fearful, lifelong inner tension (B6)
20. Reaching puberty later than normal – growth after the age of 16 (Zinc)
21. Difficulty digesting, a dislike of protein or a history of vegetarianism (Zinc)
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin (Zinc)
24. Poor sense of smell or taste; preference for spicy foods (Zinc)
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue or exhaustion (Zinc)
27. A tendency to overreact to tranquilizers, barbiturates, alcohol or other drugs (in other words, a little produces a powerful response)
28. A tendency toward anemia
29. History of mental illness or alcoholism in family (Zinc and B6)
30. Easily upset by criticism, offended easily
31. Bad breath or body odor when ill or stressed (Zinc)
32. Prone to acne, eczema or psoriasis (Zinc)
33. Thin skin
34. Hyperpigmentation of the skin
35. Bouts of depression or nervous exhaustion (B6)
36. Prone to frequent colds or infections (Zinc)
37. Abdominal pain; constipation, irritable bowel syndrome (Zinc)
38. Hair loss (lack of hair on head, eyebrows and/or eyelashes) (Zinc)
39. Irregular menstrual cycles, PMS (B6)
40. Low libido
41. Allergies (Zinc)
42. Tingling in arms and legs (neuropathy) (B6)
43. Migraines (B6)
44. Muscle pain (achy, flu-like tenderness) (B6)
45. Frequent yeast infections/yeast overgrowth (Zinc)
46. Reading difficulties (e.g. dyslexia)
47. Get motion sickness (B6)
48. Cold hands and feet (Zinc)
49. Codependency
49. Substance abuse/addiction (B6)
50. Creaking joints, joint pain, knee pain (B6)
51. Overcrowding of teeth in upper jaw (Zinc)
52. Poor looking tooth enamel; tendency for cavities (Zinc)
53. Delusions, hallucinations, paranoia (Zinc)
54. Emotionally unstable (Zinc)
55. Pessimism (Zinc)
56. Early graying of hair (Zinc)
57. Insomnia (Zinc and B6)
58. Prone to stitch in the side when running (Zinc)
59. Hyperactivity (Zinc and B6)
60. Fluid retention (B6)
61. Obsessive Compulsive Disorder, which includes collecting/hoarding (B6)
62. Seizures (B6)
63. Hypoglycemia (Zinc)
64. Frequent ear infections as a child (Zinc)
65. Suicidal tendencies (Zinc)
66. Gluten intolerance (Zinc)
67. Prone to ovarian cysts (Zinc and B6)
68. Craving for sweets/carbs (Zinc and B6)
69. Tremors (B6)
70. Age-related Macular Degeneration (Zinc)
71. Low Progesterone = miscarriage in first 7 weeks or early menopause (B6)
72. Heavy Metal Toxicity (particularly Copper)
73. Sweet, fruity breath and body odour
74. Auditory processing disorder

As noted, if you experience a combination of the symptoms above, you likely have pyrrole disorder. I recommend you take this quiz here to see where you fall on the ‘spectrum' and if further investigation is warranted.

Formal testing is done via a urine sample taken under specific conditions – though some practitioners bypass this if enough of the criteria is met through symptoms.  They begin treatment and assess if improvement occurs as a confirmation of the diagnosis. Testing zinc, B6, Omega 6 and heavy metal levels  (copper) is helpful as well.

Disorders that are commonly diagnosed in people with Pyrrole disorder:

Some fancy statistics to ponder –

The following statistics were obtained from the publication Discerning the Mauve Factor – Part 1 , by Woody R. McGinnis MD; Tapan Audhya PhD; William J. Walsh, PhD; James A. Jackson PhD; John McLaren-Howard, DSc, FACN; Allen Lewis, MD; Peter H. Lauda, MD; Douglas M. Bibus, PhD; Frances Jurnak, PhD; Roman Lietha, MD; Abram Hoffer, MD, PhD.

Neurobehavioral Disorders Associated with Elevated HPL:

  • Latent AIP 70%
  • Acute Intermittent Porphyria (AIP) 100%
  • Down Syndrome 71%
  • Schizophrenia (Acute) 59-80%
  • Schizophrenia (Chronic) 40-50%
  • Manic Depression 47-50%
  • Depression, non-Schizophrenic 12-46%
  • Criminal Behaviour – Adults (Sudden deviance) – 71%; Youths (Violent Offenders) – 33%
  • Autism – 46-48%
  • Epilepsy 44%
  • Learning Disability/ADHD 40-47%
  • Neuroses 20%
  • Alcoholism 20-84%

Other conditions often found to occur in Pyrolurics
Allergies
Bi-Polar Disorder
Hypothyroidism
Learning Difficulties (ie Dyslexia)
Lyme Disease
Manic Depression
Muscular Sclerosis
Neurosis/Neurotic – can become violent offenders
Obsessive Compulsive Disorder (OCD)
Parkinson's Disease
Polycystic Ovarian Syndrome
Post-Partum Depression
Rheumatoid Arthritis
Substance Abuse
Tourette's Syndrome (Tics)

Dealing with Pyrrole

Unfortunately, Pyroluria falls outside the realm of mainstream medicine due to the fact that the only way to rectify the problem is by improving nutritional status, diet, digestion and stress levels. Mainstream medicine relies on drugs to suppress a symptom or relieve suffering, and this form of treatment will not work for a person who has a Pyrrole disorder. Sadly sufferers of Pyroluria fall through the cracks and are often misdiagnosed and given medication or drugs that do nothing to rectify the underlying problem.

Pyrolurics have a greater than normal need for zinc, vitamin B6, and Omega-6 fatty acids. Treatment commonly includes the supplementation of these compounds.  However, it is not as simple as taking vitamins – the balance of nutrients needed is very individual and additional supplements may be needed depending on co-existing conditions. These can be supplemented individually or incorporated into the diet. Working with a qualified health professional with experience in Pyrrole disorder is the best option.

In addition to supplementing it is important to look at factors such as environmental toxins, gut health and lifestyle.  There is no easy fix for pyrrole disorder and it requires lifelong maintenance to manage symptoms.

This is a very brief and basic overview of Pyrrole. It's a complicated condition and there is no quick and easy one-size fits all approach to managing it.  I have 5 children (and myself and my husband) who all fall under the umbrella of Pyrrole yet each of us express different symptoms and require different approaches to manage our health.  That is why I've started this blog so that we can share how we tackle life with Pyrrole Disorder.

tammy

  • Pfeiffer, C.C. and Holford, P., Mental Illness and Schizophrenia: the Nutritional Connection, Harper Collins, 1987.
  • Pyroluria – Zinc and B6 deficiencies. Int Clin Nutr Rev 1988 (by Carl Pfeiffer MD, PhD, et al.)
  • Pfeiffer, C.C., Mailloux, R., and Forsythe, L., The Schizophrenias: ours to conquer, Biocommunications Press, 1988.
  • Cutler, M.G., Graham, D.J., and Moore, M.R., The Mauve Factor of Porphyria, 3-ethyl-5-hydroxy-4,5-dimethyl-delta-3-pyrrolline-2-one: effects on behaviour of rats and mice,Pharmacology & Toxicology, 1990.
  • The Discovery of Kryptopyrrole and its Importance in Diagnosis of Biochemical Imbalances in Schizophrenia and in Criminal Behavior J. Orthomolecular Medicine 10(1):3 1995 (by Abram Hoffer M.D, PhD)
  • Fatty Acid Profiles of Schizophrenic Phenotypes, 91st AOCS Annual Meeting and Expo San Diego, California 2000 (by William Walsh PhD of the Pfeiffer Treatment Center)
  • Urinary Pyrrole (Mauve Factor): Metric for Oxidative Stress in Behavioral Disorders, presented to the Linus Pauling Institute, 2003 (by Woody R. McGinnis MD)
  • Campbell-McBride.N., Gut and Psychology Syndrome, Medinform Publishing, 2004.
  • Forsgren.S., 2010, Kryptopyrroluria (aka hemopyrrollactamuria): A major piece of the puzzle in overcoming Lyme disease, Public Health Alert, vol. 5, no. 5, viewed 23rd January 2011. http://www.publichealthalert.org/Articles/scottforsgren/2Klinghardt.htm
  • McGinnis, W.R., 2004, Pyroluria – Hidden Cause of Schizophrenia, Bipolar, Depression and Anxiety Symptoms, International Guide to the World of Alternative Health, viewed 24th January 2011.http://www.alternativementalhealth.com/articles/pyroluria.htm
  • Grundy SM. Hypertriglyceridemia, insulin resistance, and the metabolic syndrome. Am J Cardiol 1999;83:25F-29F.


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Author: Tammy Rose-Townsend

Tammy is a mom to 5 kids ranging in age from 20 to 3 - they all have Pyrrole disorder and MTHFR gene modification and she is passionate about sharing tips on what works for her family in managing symptoms naturally and on a budget. When she's not taking care of the gang she is blogging and sharing tips on how to make money from home through blogging, social media and direct sales. She also runs the online direct sales site sassydirect.com the leading online direct sales consultant directory and blogging platform.

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