If you’ve never heard of the condition, pyroluria, you’re not alone. Chances are your doctor hasn’t heard of it either, or isn’t too interested in it, even if he or she does know anything about it. Why? Because there are no drugs to treat it.
What is it?
Pyroluria is a genetic metabolic condition long recognized by the field of orthomolecular medicine and orthomolecular psychiatry. As many as 50% of those with autism, 40% of alcoholics, 70% of schizophrenics, 70% of persons with depression and 30% of persons struggling with ADD may have pyroluria underlying these conditions and make them very difficult to reach with traditional and even holistic therapies. –But pyroluria isn’t limited to these populations. As much as 10% of the population may have this metabolic condition and not know it…but may have lifelong symptoms associated with it that tend to worsen with age…and stress.
What are the symptoms?
In general, the symptoms of pyroluria have a mysteriously intractable quality to them and may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (with added stress of any kind making the symptoms worse), digestive issues and difficulty digesting protein, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity, poor short term memory, and a tendency in many to lean towards being a loner…among many other potential symptoms.
I’ve also included a screening tool at the end of this article outlining many of the most common symptoms reported you can use to help you determine whether it is worth additional testing to pursue a more definitive diagnosis. The test is a simple urine test anyone can order for themselves using the resource I’ve provided at the end of this article.
OK…so what is pyroluria (in more detail)?
During the synthesis of hemoglobin in the body there are waste products generated called kryptopyrroles. Kryptopyrroles don’t really serve any useful biological purpose and are normally excreted by most of us uneventfully. In someone with pyroluria, however, these kryptopyrroles don’t get excreted and will tend to build up–even more so under stress of any kind. It turns out that kryptopyrroles have a tendency to bind very strongly with things like zinc and vitamin B6, making them largely unavailable to the body…which is a very big problem. Zinc and B6, of course, are nutrients critical for the functioning of your entire body and mind–including your digestion, immune system, cognitive functioning and emotions. Over time deficiencies can really take their toll on the way you feel and function and have serious consequences. Often people will go for years suffering the effects of pyroluria regardless of what therapies they try or how well they eat.
Pyrolurics also have a greater than normal need for omega-6 fatty acids, particularly dietary arachidonic acid (AA–found readily 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).
The really good news is that once diagnosed, pyroluria is very manageable with the use of disciplined supplementation–typically requiring large doses of zinc and B6 (liquid ionic zinc and a co-enzymated form of B6 known as “P-5-P” tend to work best). Also typically some supplementation with GLA is also needed, along with a diet somewhat higher in sources of arachidonic acid. Sufficiency for zinc can be determined using a “zinc tally” test and B6 sufficiency can be subjectively determined by the return of regular (remembered) dreaming. The “bad news” is that some ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term…a small price to pay for real relief. Without appropriate supplementation symptoms ten to return again in a week or two.
With appropriate supplementation and stress management mild cases of pyroluria tend to respond quickly. More severe cases tend to experience gradual and incremental improvement over a period of several months.
Additional considerations for the pyroluric include the need for improving digestion and hydrochloric acid status (see chapter on digestion in my book, Primal Body-Primal Mind), avoidance of phytate-containing foods such as grains, legumes and soy, and the susceptibility to heavy metal toxicity from mercury, cadmium and copper. Where the restoration of zinc sufficiency is highly resistant one may need to pursue further testing to see if heavy metal toxicity is an issue.
The following includes the most common symptoms associated with the condition Pyroluria. If you answer “yes” to 15 or more of these then further testing may be worthwhile:
1. Little or no dream recall
2. White spots on finger nails
3. Poor morning appetite +/- tendency to skip breakfast
4. Morning nausea
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light
7. Hypersensitive to loud noises
8. Reading difficulties (e.g. dyslexia)
9. Poor ability to cope with stress
10. Mood swings or temper outbursts
11. Histrionic (dramatic) tendency
12. Argumentative/enjoy argument
13. New situations or changes in routine (i.e., traveling) particularly stressful
14. Much higher capability and alertness in the evening, compared to mornings
15. Poor short term memory
16. Abnormal body fat distribution
17. Belong to an all-girl family with look-alike sisters
18. Dry skin
20. Reaching puberty later than normal
21. Difficulty digesting, a dislike of protein or a history of vegetarianism
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin
24. Poor sense of smell or taste
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue
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
30. Easily upset by criticism
31. Sweet smell (fruity odor) to breath or sweat when ill or stressed
32. Prone to acne, eczema or psoriasis
33. A tendency toward feeling anxious, fearful and carrying lifelong inner tension
34. Difficulty recalling past events or people
35. Bouts of depression or nervous exhaustion
36. Prone to frequent colds or infections
Again, if you have answered yes to 15 or more of these then consider testing further using a urinary screening test for the presence of elevated kryptopyrroles via Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their website for more information. Pyrroles 1 Collection Test Info.
Testing for this condition is simple, relatively inexpensive and readily accessible to anyone without a prescription.
NOTE: It’s important that a clear laboratory diagnosis is determined before attempting high dose supplementation with zinc and/or B6. Working closely with a qualified health care provider knowledgeable about this condition is strongly suggested.
For additional reading or research:
- The Relationship Between an Unknown Factor (US) in the Urine of Subjects and HOD Test Results. J Neuropsychiatry 2:363-368, 1961. (by Abram Hoffer MD, PhD & Humphry Osmond, M.D.)
- The Presence of Unidentified Substances in the Urine of Psychiatric Patients 2:331-362, 1961 (by Abram Hoffer M.D, PhD, et al)
- The Presence of Malvaria in Some Mentally Retarded Children. Amer J Ment Def 67:730-732, 1963. (by Abram Hoffer M.D, PhD, et al)
- Malvaria: A New Psychiatric Disease. Acta Psychiat Scand 39:335-366, 1963. (by Abram Hoffer MD, PhD & Humphry Osmond, M.D.)
- Malvaria and the Law. Psychoso-matics, 7:303-310, 1966. (by Abram Hoffer M.D, PhD, et al)
- Mauve spot and schizophrenia. American Journal of Psychiatry 125(6):849-851, 1968.
- Biochemical relationship between kryptopyrrole (mauve factor and trans-3-methyl-2-hexenoic acid schizophrenia odor). Res Commun Chem Pathol Pharmacol 1973 (by Carl Pfeiffer MD, PhD, et al.)
- Studies on the occurrence of the mauve factor in schizophrenia [article in Polish]. Psychiat. Pol., 7(2):153-9, 1973.
- Treatment of pyroluric schizophrenia (malvaria) with large doses of pyridoxine and a dietary supplement of zinc. J. Orthomolecular Psychiatry3(4):292 1974 (by Carl Pfeiffer PhD, MD & Arthur Sohler PhD)
- A rapid screening test for pyroluria; useful in distinguishing a schizophrenic subpopulation. J. Orthomolecular Psychiatry 1974 3(4):273 (by Arthur Sohler PhD)
- Neurological and behavioral toxicity of kryptopyrrole in the rat., Pharmacol Biochem Behav 3(2):243-50 1975
- Zinc and Manganese in the Schizophrenias. J. Orthomolecular Psychiatry 12(3):215 1983 (by Carl Pfeiffer PhD, MD and Scott LaMola, BS)
- A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria., Med Hypotheses 19(4):333-8 1986
- Pyroluria – Zinc and B6 deficiencies. Int Clin Nutr Rev 1988 (by Carl Pfeiffer MD, PhD, et al.)
- 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)
Additional references may be found listed in the Reference section at the back of my book, Primal Body-Primal Mind
Also–be sure to listen to my radio show podcast where I discussed Pyroluria with nutritional psychologist and best selling author, Julia Ross!
For more information about Pyroluria and treatment view this video: