Er….say WHAT?
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:
PYROLURIA QUESTIONNAIRE
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
19. Anxiousness
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:
Pyroluria, zinc and B6 deficiency, can cause anxiety and depression
Check out my Primal Restoration® Certification Course!
Hello, I appreciate all of this information. I am researching this for my 23 yr old daughter. She goes to school in South Carolina and I am concerned the testing results may not be accurate. From what I read, Dr Wilson says : “The kryptopyrrole molecule is unstable and will disappear rapidly at room temperature or if exposed to bright light. The urine sample must be placed in a freezer immediately after acquisition. Kp can be lost in the freezer if the temperature isn’t well below 32 degrees F. We’ve also learned that exposure to bright light results in breakdown of the Kp molecule. Finally, the sample must be maintained in a frozen condition during shipment. ”
Anyone run into this problem or have suggestions?
Thanks!
even if you’re not pyroluric, based on test results, if you have a lot of the symptoms, you still need supplements to get your body and mind back on track. i contacted nursewarriormom for help, and eventually took my 5 y.o. son to mensah medical for treatment. he’s been diagnosed with sensory processing disorder, high anxiety, fine motor skills delay, IBS, and had blood sugar problems. he is almost a normal kid now, after 5 months on the supplements. he didn’t have pyroluria, but did have high copper / low zinc, and is an undermethylator. i’ve since taken myself to mensah and my 3 y.o daughter. the 2 of us are high copper / low zinc and undermethylators as well (no surprise there). please, please, please…if you’re desperate to get help for you, your spouse, your children, or anyone, consider mensah medical. they have been a life saver for us (not kidding)!
I was not diagnosed with pyroluria. I found out myself when I read “7Weeks to Emotional Healing” by Dr. Joan Mathews Larson.
This book saved my life.
This book gave me a shock, this is my dad! My sister! My son! and Then I realized I was looking at me.
I got divorced in 2002 and could not hold a job. The stress of being in the work world was too much for me. As a result, my job history looks terrible…until recently.
I recommend Dr. Larson’s suggestions in her book, and I also tell people to find out what their body type and blood types are, as per “Different Bodies, Different Diets” by Carol Mein, and “Eat Right 4 Your Type” by Dr. D’Adamo.
I got these books from the library first, then decided to buy my own copies.
With these books, you find out what foods are medicine and what foods to avoid. As a result of this information, especially from Dr. Larson, I now can function normally.
Before, I was a mess. In fact, it got so bad that when I got really stressed out, I started shutting down, and I couldn’t think, couldn’t make decisions, and then I couldn’t get out of bed.
Then I got fired because I kept calling off “sick”. But my sales job was so stressful to me, that I often ran to the ladies’ room to cry, to get out the awful feeling of being overwhelmed.
That’s what this disease is all about. Your nervous system is so whacked, you start getting overwhelmed by things, and stress of any kind becomes unbearable.
This is because the pyrroles go around and grab zinc and B6, and these two are essential for your emotional well-being.
…And I’m telling you what, it makes you feel like you’re losing your mind.
You make plans with your friends, your family, and then you just can’t go. You write that report and you get ready for the monthly presentation, and you pancake. You plan your son’s birthday just like you always do, but this year, you just can’t do it, and you cancel and upset your son. You just can’t make yourself carry through, even tho’ you promised.
The stress is different for different people. A high stress job, noise, driving in heavy traffic or on the freeway, a test, deadlines, a new exercise program, a boss or coworker who’s an ass, abusive relationships, constant cold weather, loneliness, chronic pain, taking care of a loved one who’s sick, moving, getting a divorce, getting married, getting promoted…… I don’t know, you name it….if it’s stress, this pyroluria thing gets WORSE.
There were times when I didn’t leave the house for 2 weeks and stayed in my bed with the covers over my head because I just couldn’t take it anymore! I wanted everyone to go away and LEAVE. ME. ALONE.
It was hell trying to get myself up on my own two feet and stay there. It was awful. It was embarrassing. There was nothing I could say that they would understand.
So you keep your mouth shut.
Most pyrolurics are thin—often underweight, sensitive, kinetic, very bright, artistically inclined. Others are brainiacs like my computer programmer sister, lol.
Many are riddled with allergies, celiac and other digestive problems, thyroid problems. You look at those books and you can learn how to overcome these and live a fairly normal life.
When I’m eating right, following the books and taking my vitamins, I really feel good. Like @Leigh Ann above, I was also an undermethylator, found that out about 8 years later with a fabulous naturopath in Columbus, Ohio. I take Pure Encapsulations B6 Complex.
Also, your adrenals get shot after a while. Especially if your diet is high in sugar & starches, stimulants such as coffee and caffeine.
So there are diets for strengthening your adrenals. My adrenals need help, I know, when I have sugar cravings, my blood pressure is low, and I run around feeling tired most of the time.
You feel weak, sometimes kind of nauseated, and most of the time you just want to hide. No kidding. And everyone around is wondering what the heck is going on with you.
Don’t bother trying to explain it to them. Find yourself a doctor who understands, or a D.O. kind of doctor, they might be more open to the whole pyroluria thing. But above all, do your own research!
You don’t have to feel nasty all the time like this anymore. You can feel good again. If you want to talk to someone who will listen email me at adonyaja at yahoo. God bless and Love&Light.
I just ordered the test through the Riordan Clinic. I score very high on the questionnaire.
I want to thank and hug every single one of you for sharing your experiences in this thread !!!!!!!!!!!!!
No kidding, I just realized this has plagued three generations of my family and I and how we only ever focused on the psychiatry aspect of this TREATABLE affliction and that it requires not a single pharmaceutical with their treacherous side effects !
We have fell prey to the pharmaceutical industry to the tune of lost lives, a bajillion dollars and lost tears.
Long may we stay committed to one another, our fellow human beings and further our own capabilities of healing our loved ones !!!!
Out of all the questions 24 of them fit me. I feel like I’m alone and nobody understands me. After reading all of these messages I know I’m not. What do you do if you don’t have the funds to do the testing? How much B6 and zinc should I take? I really need help I feel like I’m losing my mind. I have been on antidepressant for years, I feel like I’m getting worse than better. Nothing seems to help. Is all I do is cry and stay in my bedroom so I don’t lash out at anyone because everything bothers me.
Fascinating article, though this deals with the mental effects of the problem, there can be physical ones too. I suffer from recurring Lichen Planus and Gastritis (no infections found for the gastritis) A Chinese herbalist diagnosed “fire in the blood” Recently I asked a naturopath if Pyroluria could be the cause of my problems, he said he did not know, but has put me on a grain free diet and supplements. I am much better and feel I am on the road to better health.
Before anyone ask why Idid not go back to the Chinese herbalist, he lives in Hong Kong.
Does anyone know of a doctor in NJ near Morristown? I have found Nora’s site incredibly helpful as well as the readers comments. I have had some of these symptoms all my life but have gotten worse with age. I was diagnosed, after 6 years of testing, with Lyme, co-infections, multiple active virus’s, very low Fatty Acids and Leaky Gut. I am on a very time consuming protocol. In the last 9 months my stress levels have reached extreme highs and thus I can check just about all symptoms on the above list. My husband can not deal with me. He thinks I have Alzheimer’s and remarks how incompetent I am. This not only affects me but also how our children perceive and treat me. The attitude is quite unhealthy and exerbates my situation. If there is no recommendation for a doctor nearby, as I can not travel far, then which lab is best recommended with a doctor I can consult with who can integrate supplements with my current protocol. I appreciate any suggestions! TIA
I have just learned about this condition very recently through research. I did hear about the porphyrias awhile ago, but did not pursue it. Now that I rtealize this is me, for sure, I tested myself with B-6. It is unbelievable how much better I feel! I only have 100 m.g.’s so I am taking that. I feel like a totally different person. There is no more pessimism and negative thinking and inner stress. I just feel wonderful. How could I have suffered fro 20 years with depression and fearfulness, and all the other symptoms and feel totally well with one B-6 capsule. Of course I am taking it twice a day now. And when I get my new supply I will be taking 30 m.g.’s 3 times a day. All I can say is that I am stunned. I have to find further help for my health from a Naturopath/Osteopath, which is available an hour from here. But, in the meantime I am thankful to feel alive.:) I just had to share this with anyone who stands to benefit. The beauty of finding out is as simple as taking B-6, or the P5P form of B-6, as some folks apparently do better on it. May everyone spread the word about this illness and help their friends recover:)
Hello, I recently did a pyrrole urine test my doctor said my levels come back as very high but didn’t mention anything about the disorder.. He also said my zinc levels are normal and high histamine, Is a very high reading enough to say I have pyrrole disorder? , I answered yes to 20 of those questions my number one symptom has been anxiety, I’m waiting till the new year to start on the supplements prescribed , I really hope that this helps
Maggie Sophia,
Who was the Dr. In Columbus, Ohio?
Greetings!
Thanks so much Nora for providing this wealth of information.
I have recently been diagnosed with a pyrrole disorder and have a history of Lyme disease as well as hypothyroidism. I have worked with several doctors over the years and am currently looking for a doctor that has experience treating all three of these conditions. I’d prefer to find someone locally in Austin, TX, but am willing to work remotely with the right person as well. Nora- do you recommend anyone?
Thanks so much!
Teal
Dear Teal— There is a person trained by Julia Ross in treating pyroluria that I hear is very good and her costs are reasonable. Her name is Maxime Zahra Stadlen, MSHN. Her business is Prasad Nutrition. http://www.prasadnutrition.com. She has offices in SF and in Sonoma County. You might check and see if she does consultations at a distance. ~ Nora
I am a match with almosy every one on that list. My question now is, for us overmethylators with low histamine, high copper, plus almost all symptoms from the above list (I am awaiting test results for confirmation), what form of B12 and folate (if any) should we take? I read allover that “folic acid” is to be avoided and instead take methyl-folate, folate, or folinic acid. Is this accurate? B12 just confuses me more. What are the thoughts hete on adding those 2? (I already take the zinc and P5P among other things).
Nora, thanks for this. Can you be more specific about #16. Abnormal body fat distribution? What would be considered abnormal body fat distribution? Thanks so much.
Thanks Nora for a great blog. I had recently been diagnosed diagnosed PD and am like everybody else trying to find out as much as I can to help myself and your site has put more pieces of the puzzle together for me. I did also come across another site http://www.conqueringpyroluria.com which offered a treatment protocol which, was beneficial. Again thank your for your great blog.
Carla,
The doctor in Columbus, Ohio, is Jennifer Ball, Naturopath. She also found out I needed help with folacin assimilation and when she started me on Pure Encapsulations B6 Complex I was like wow. I noticed a difference the 2nd day. I felt…together, not scattered, hard to explain. I felt more and more settled in my skin as I took this vitamin complex. NOTE: This is the B6 complex. The plain B complex by PE does NOT have the same effect. Also, I only have to take 1 pill a day of the PE B6 complex to get the good effect. Good luck and best wishes.
Wow… my therapist gave me information about Pyroluria last night. I am sooo glad I came across your information on it Nora! After reading Primal Body Primal Mind, I really trust you. I did the questionnaire and got 23. I am going to find a Naturopath and ask them to arrange the urine test for me. I am suspecting I will have Pyroluria. I have suffered with Bipolar most of my life and after exercising, eating well and taking mood stabilisers for most of my life. I am really hoping that their might be an end to so much suffering. Thankyou again.
Dear Luci, I’m so happy you are getting the help you deserve. Thank you for your kind words. Keep me posted on your progress! ~ Nora
Just reading through all these interesting comments over the last several years. I am in Australia near Melbourne and have had the pyroluria test in March of 2015 and tested positive but not in the extreme range. I have had a lifetime of the problems associated with this disorder ( also including fibromyalgia). I write now because a recent urine test has shown high levels of albumin and i am wondering if there is a connection or is this a separate issue? Any comments would be appreciated. Cheers (from a US citizen living in Australia)
Hi, Does anyone know of a doctor in the Colorado Springs area? I feel sure that I have this as my Environmental Illness doctor started me on Evening Primrose oil and I mega dosed for years on B6 which did not help me as much. I take small amounts of zinc which do help. I am very excited that following this plan may help me to get well. I have been sick for ages. I was told to go gluten free but really all grains bother me and it didn’t make that much difference but just hit me in the pocket book.
I have been suffering for many years with many of the symptoms listed above; severe depression, anxiety and generally sick all the time. I have had numerous blood tests done with different GPs to no avail.
I was just wondering if the regular bloods would have shown low levels of zinc and B6? mine were apparently normal according to general standards.
To have the proper testing for this condition where I am from costs around 400euro and I just cant swing that. However I really think I may have pyroluria. Is there a way to find out with standard testing?
I answered yes to 24 of the questions and some I could possibly say yes to, but I only counted the ones that were positively true. I have had anxiety and depression all of my life, but just recently I have developed staph infections all over my face and chin, they have now become antibiotic resistant. They will not go away. I have had an infection of some sort going on now for a year, many tests run and nothing ever seems to answer any questions. I am getting desperate at this point, b/c I can’t work, and I can’t be around anyone (although I prefer to be alone), it would be nice to have the opportunity to be around people.
Dear Emma,
A regular chemistry would not typically show these deficiencies (although from a functional standpoint it can be possible to infer a possible B6 deficiency). There is no other manner of regular testing that is able to accurately identify this condition, unfortunately. And it really should be positively diagnosed before undergoing treatment.
I am now recommending DHA Laboratory (located in Mount Prospect, Illinois) for testing. DHA was founded in 2003 to support the treatment model of the original Pfeiffer Treatment Center. They not only report out your “actual” kryptopyrrole level, but also a “corrected” kryptopyrrole level that takes into account the concentration of the urine sample.
Link: http://www.pyroluriatesting.com
An example of specific practitioners speciaizing in this disorder: Dr. Judy Bowman, MD and Albert Mensah, MD: (www.mensahmedical.com). There are also others. These two come highly recommended on numerous forums.
I hope this helps!
Warmly,
Nora
I just tested my daughter and it came out positive. We have you on P-5-P at 150 mg/day and Zinc Gluconate at 80 mg/day and Manganese Gluconate at 10 mg/day. She has been doing this for one week with not much change other than she has dream recall now. I know it varies from person to person but what is the approximate dosages of B6 and Zinc that you have found to help?
If I titrate the dosage up, what is the max I should not exceed?
thanks
Marc
Hi, could one of You please help me with getting the right Pyroluria test kit for Denmark where I live? I strongly believe I have it and suffered from it since childhood: Now 45. Life in ruins since I was teenager.
I already tried supplementclinic but they sent me a wrong kit which was just for national/domestic US purpose (wasted + 2 months on this. DHA I wrote January 2nd, never responded back). I got a refund. I can’t seem to find anything nearby. Perhaps those instruments are only to find in the US?
I went through a period of pull-ups of emotional stress with outside family,
and then afterwards I noticed I could no longer handle much stress, I don’t feel alert, and feel like I’m living in a dream world/groggy, with hazy memory, head pressure, completely flat, and many of these pyluria symptoms, esp sensitive to bright lights. (And all this after being sharp and upbeat before this. It makes no sense whatsoever such a drastic change) My problem is I’m sensitive to B vitamins. In fact, I’m sensitive to many for some reason. Anyone know why that is? Any tips? Thanks.
I have pyroluria, either brought on by stress or by genetics (and if genetic, brought on by relative’s stress, I would argue, in light of epi-genetics).
It’s a liver and enzyme dysfunction. I’m wondering if it has any connection to my waking between 1am and 3am during phase II of liver detox.
This article is an intense dive into pyrroluria:
http://www.health-science-spirit.com/pyroluria.htm