Do You Have Pyroluria?

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 ofvegetarianism

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!

Listen to the show podcast

For more information about Pyroluria and treatment view this video:

Pyroluria, zinc and B6 deficiency, can cause anxiety and depression

Comments

  1. Mystic Tuba says

    I just found out last week I have this. I had never heard of it; had been “doing the rounds of doctors” for more than a decade due to a health collapse. This one guy, based on what I told him, had me do the urine test, which came back a strong positive. He said the route out may be difficult for a while (I had heavy lead / cadmium poisoning at one point) but I am more than willing to go through whatever I have to, to clear this up. To find out that my emotional reactivity, my continual tension, my keeping to myself, my lack of energy, etc etc etc….are not my fault, is beyond description in how I feel. Just to finally have an answer.

    Curious about your web url: I did primal therapy back in the day, and it helped immensely. Did not solve all my problems, clearly, but I have been able to have a life. Don’t know if that is the “primal” referred to, but whatever.

    MT

  2. Candace says

    24 of those questions apply to me almost all of the time, and many of those others apply most of the time. I’m not exactly sure how I’ll get tested for it as I live a bit out of the way, though.

    Thank you so much Nora for all the great information in your book/blog and radio show <3

  3. Sia Lammerse says

    Hi
    I have been positively diagnosed with Pyroluria. do you have a definitive list of foods to eat,avoid, eat in moderation? i have not been able to find this anywhere.
    many thanks

  4. Sherilyn says

    I was diagnosed with pyroluria a few years ago, along with a few other health issues, but couldn’t tolerate the orthomolecular regimen “they” had me on, so I just stopped all supplementation. It wasn’t until I found Nora’s website and book that I began addressing the problem again, this time with MUCH greater success. She is a LIGHT through the wilderness of information, to be sure… and she is delightfully responsive to inquiries. I’ve been both flabbergasted and impressed by how accessible Nora is. Her work is a “godsend!”

  5. says

    With pyroluria, the primary problem is a chronic deficiency of both zinc and B6 (P-5-P) due to a genetically based metabolic disorder. Diet-wise, anything you can do to generally improve the quality of the foods you eat and eliminate sugar, starch, refined foods and improve digestion is only going to be helpful. I have no specific recommendations to make for you, food-wise, other than what I’ve generally outlined in my book, Primal Body-Primal Mind. I hope this helps.

  6. gregory says

    i found i had pyroluria 2 years ago after struggling my whole life and finally melting down completely after many years. i am 5’8″ and in 08 i weighed 100 pounds and was prepared to commit myself. then i found i had this. my severe symptoms are to numerous to mention but within 48 hours things started to improve.
    ever since i learned i had this i started to see it in my teenage kids as a result of the stress of my divorce . now my daughter has been put on prozac and still won’t get tested. and you know how doctors view this even when presented with accredited writings. do you have any suggestion. i fear this literally could be life threatening for my daughter given the possibility of suicide.
    thanks

  7. says

    This is a tough one.

    You might consider contacting the Pfieffer Clinic /Brain Bio Center in Princeton, NJ and see what it is they may recommend or be able to provide you with.

    I wish both you and your daughter well.

  8. Ann Beckett says

    I too have pyrroluria, diagnosed two years ago and on a metabolic rebuilding program designed by Dr. Paul Eck in the 1970s. I too had a total health collapse after having been sick all my life and never diagnosed since though I had terrible tension and anxiety, I never had a frank mental illness, which is how the diagnosis is taught in med schools. Like Gregory, I experienced the miracle of zinc and B6 replacement within 48 hours. However since the zinc and B6 depletion caused by pyrroluria compromises so many of the body’s processes, like hormone production, neuro transmitter production, energy production at the cell level, and causes heavy metal and other toxicities, the road back to health from many years of multiple impacts is long and slow.
    Nora there are some other common symptoms not on your list you might want to add, like sun sensitivity/burn easily, and paresthesia (buzzy, tingly sensations).
    Dr. Dietric
    Thanks for helping to bring this affliction out of the shadows.

  9. Ann Beckett says

    I too have pyrroluria, diagnosed two years ago and am on a metabolic rebuilding program designed by Dr. Paul Eck in the 1970s. I too had a total health collapse after having been sick all my life and never diagnosed since, though I had terrible tension and anxiety, I never had a frank mental illness, which is how the diagnosis is taught in med schools. Like Gregory, I experienced the miracle of zinc and B6 replacement within 48 hours. However since the zinc and B6 depletion caused by pyrroluria compromises so many of the body’s processes, like hormone production, neuro transmitter production, energy production at the cell level, and causes heavy metal and other toxicities, the road back to health from many years of multiple impacts is long and slow.
    Nora there are some other common symptoms not on your list you might want to add, like sun sensitivity/burn easily, and paresthesia (buzzy, tingly sensations).
    Dr. Dietrich Klinghardt, who practices in Kirkland WA is an MD with a PhD in neurology trained in Germany who believes pyrroluria is (also?) caused by Lyme and other spirochetes. It’s quite possible there are different ways to disrupt the heme synthesis pathways; the problem is how to support the body in repairing the severe compromises pyrroluria causes which are compounded over time. Nora’s diet is a very good foundation for healing for the pyrroluric, who needs extra protein as a result of compromised protein digestion and assimilation and real fats as they occur in grass fed animals for repair of the damaged myelin sheaths of nerves. Every advantage you can give your body/mind/spirit helps in recovery, patience chief among them.
    Thanks for helping to bring this affliction out of the shadows, Nora, so more people can get help.

  10. says

    My friend just sent me this link. So good to see this condition being talked about. I was diagnosed with this last year after working for 3+ years to find a solution to my numerous health issues. As many stated above, i experienced a total collapse of my health- this seems to be the common thread among pyrolurics.
    I found out about this condition when I was researching copper toxicity on the Weston Price website- my search results yielded several articles written by Theresa Vernon. I then proceeded w/ testing through biocenter, once diagnosed as positive I began work with Theresa. The extent of my issues were vast- over the past year I have had ups and downs but more ups than downs, things are improving!
    I just got my latest test results back from Theresa and I have successfully moved out of adrenal burnout, (caused by pyroluria). This experience has taught me there is always a way forward and so much hope on the journey to recovery!

  11. lauren says

    I have been diagnosed and I am wondering if there is any link between the disease and hormones. Does is cause hormone imbalance, does hormone imbalance trigger symptoms? I have had awful episodes of vomiting, shaking, and passing out surrounding my cycle. Also, how does pregnancy generally go for people with this disease? Does it tend to be risky in any way. I have had way too many emergency room visits to be willing to have a pregnancy plagued with worse health. I hope you will have some answers to my questions.

  12. says

    Lauren – There is a Pyroluria page on Facebook that is very helpful for sharing information about the disorder. I’ve recently learned there that copper is necessary for a successful pregnancy but for the Pyroluric the build up in copper causes problems so that after the baby is born it needs to be (gently) detoxed. I have a couple of Portland metro Pyroluria health care providers on the HEFT website listed. Know someone looking for help in Seattle and am adding to the HEFT site when found. Klinghardt in Kirkland treats it but is unconventional in some ways. I think the condition contributes to hormone imbalances. There are some resource links to research at the HEFT site and some FAQ documents at the Pyroluria FB page which might help you find answers.

  13. Tanya says

    I was diagnosed with severe pyroluria 2 weeks ago and have already begun supplementation. Does anyone else have a history of pre-eclampsia? My daughter was born at 26 weeks two and a half years ago (she’s healthy now, don’t worry!). I have another clotting disorder, factor V leiden mutation, which all the specialists thought contributed to the severity of the pre-eclampsia, and the high blood pressure that I now suffer as a consequence, but the first thing my regular GP said when I told him was “No B6 will damage your blood vessels!” (my daughters GP diagnosed the pyroluria, which my regular GP had never heard of. It’s just the one of the multitude of problems I’ve presented with over the years that are attributable to pyroluria. I no longer feel like a freak!

  14. Candace says

    I tested “borderline” (10 mcg/dl) through Bio Center but plan on being tested again, this time by Vitamin Diagnostics for hemepyrrole instead of kryptopyrrole, as Ross recommends. If only it didn’t require a physician’s referrence I’d have done HP first. When I asked my doctor about it she was definitely NOT interested :(

  15. Jenny says

    Candace, do you have a link for that lab? Couldn’t find it with a name search. Wondering if this condition could explain why I get sick with literally every virus and have adrenal fatigue. I’ve gotten sick 4 times in the last 6 months, each time with severe fatigue that leaves me non-functional (like just showering is a big challenge if it happens at all). My cortisol is very low so I’ve been on an adrenal healing protocol but with another virus taking me down this week, I suspect there is more going on. Cannot afford the test now, hopefully soon.

  16. Mark says

    I’ve read all of the above posts, and feel that there is another laboratory that should be considered when having your kryptopyrrole test done. I’ve experienced extreme mood swings, and anxiety for most of my adult life with little help from traditional doctors/prescription medication. I first did my kryptopyrrole testing through Bio Center but the results came back normal. I spoke with a naturopathic doctor in my area who reccomended I try testing through Direct Healthcare located in Chicago. 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. When I looked at the results form from Direct Healthcare (www.pyroluriatesting.com), i saw my “actual” or “uncorrected” level as being normal, but the “corrected” value showed me as being pyrroluric. Once I saw I was pyrroluric I contacted the lab to see if they had any doctors who worked with pyrolluric patients. I was able to purchase a clinical consultation with a Dr. Judy Bowman (www.mensahmedical.com) and now I am on a supplement plan that has drastically improved both my anxiety and mood swings. Its incredible what you can find when doing a little bit of in depth research on this subject. Just figured I’d get the word out!

  17. Deanna says

    Writing about my son. 34 years old.. chronically depressed, not motivated and withdrawn… He is also a lifetime anti social person. My son was hospitalized for his depression a year ago and at that time placed on many medications. There has not been an improvement, he remains unable to work or care for himself. He’s an intelligent and accomplished man, 2 degrees and working on his masters program currently. (tho, he is about to withdraw). His wife has recently decided to divorce him so he is really, really, depressed now as he was completely dependent on her for all of his needs (except $). Does pyroluria affect you to this degree? Would a family history of Autism, Bi Polar, Aspergers, Oppositional Defiance Disorder be additional criteria in diagnosing this disorder or would the urine test be conclusive enough? Can he improve?? I’m so scared for him.

  18. Pam says

    Thank you so much for this website – I am going to get my daughter tested as she has more than 15 symptoms listed. After several years of getting no answers from her ccurrent doctors, going through horrible withdrawal after several years from Zoloft, we need to find a doctor willing to look outside the box at things like Pyroluria and using natural supplements instead of Drugs. Do you know if any reputable Doctors in Ohio that would be able to help us with this diagnosis?

  19. worried mom says

    My son was diagnosed with extreme pyroluria 10 days ago and has been put on a high dose of zinc and Bs along with some other supplements. I am already seeing a difference after losing hope that he was gone forever. I know this will be a journey back, but I have hope again. Psychiatrists should test for this at their intake of patients with any kind of psychosis. It is a crime to miss this easy fix for those who need it.

  20. Khloe says

    I am wondering if I have this. I have some of the symptoms and last year I developed pre eclampsia before I gave birth. Maybe I need to make a dr appointment and let him know what I am feeling. I am glad I come across this website.

  21. nursewarriormom says

    My 17 yo son was diagonosed with pyroluria and overmethylation/low histamine. We went to Mensah Medical Center and used pyroluriatesting.com. His pyrrole count was wnl, but Drs. Mensah & Bowman diagnosed him anyway, I think because he had other labs that supported that diagnosis (so glad we didn’t do this on our own). He is the poster child for this disorder. His first nervous breakdown was at 12 yrs, second was at 16 yrs. He considered himself a freak that would never be happy. His moods are nasty. He was a suicide-waiting-to-happen. We tried EVERYTHING. These diagnoses were a shock- to think that there really was a way out of this is WOW… We got our 2 individualized supplements from Village Green Apothecary (total of 10 capsules) and we are about a month into it. It is VERY slow going – a snail’s pace. After so many years of being starved from nutrients and forcing his body to work a certain way, it becomes a long, tough, uncomfortable road back. His body doesn’t want to accept much of a good thing (the nurse says specifically the niacinimide and the folic acid), even though he is only taking 1 capsule and even titrating that very slowly (every other night, then 2 on & one off, etc). Bringing his copper and free copper down evidently causes bad mood/anxiety and just looks like nothing good is happening. Then- a decent/good day, huge celebration! He never had that before – one normal day in the life of this boy and we have hope again. We call the drs for advice and they tell us that this is exactly how it works and that he will be feeling lots of things, good and bad, as his body adjusts. I believe them. His last month has been better than the rest of his life, even though it is a rocky road.

    I NEVER could have supplemented him myself. Perhaps if it was me and not my kid with a very tricky body chemistry. Challenges- teen boy who: has been sick for years, has no interest in fixing his diet, relies on food for comfort, has little hope (but compliant). To write about the heartbreak, the money, the doctors, medications would be a book.

    I am looking to help and ecourage others. Also, for someone’s success story so that I can show it to my son for encouragement.
    Thanks- nursewarriormom

  22. sue says

    I have every symptom on this list. I have experienced a total health crisis-adrenal exhaustion, chronic infections and total nervous breakdown. I have been on high doses of Bs and have changed my diet. However things seem to improve a bit and then take a nose dive. I have been treating myself as the Dr s I have seen have never heard of this and only want to prescribe more drugs. My sister had committed suicide and I am terrified I am heading down this path. I need help from a Dr. in western Canada that recognizes this disease and can test and treat it. If anyone has names of Drs I would greatly appreciate it. I live in Saskatchewan (Canada).
    the articles on this site have given me some hope!

  23. nursewarriormom says

    Try pyroluriatesting.com. Dan is great there and he will answer your questions (or email and put his name in the subject). You can do this by mail and there is a package that you can buy that includes a consultation with the doctors that will tell you exactly what to take. Getting to Mensah Medical in person is a luxury, in Illnois, but worth it. Then you can have them compound the perfect supplement for you (but not if not in person).

    I promise that I am not employed by them. I am a mom that is watching a miracle and I’m on a mission to help others. My son was headed to suicide and has not had one good day in his life. We are looking at a completely different person at only 10% treatment level.

    Feel free to email me at greathome@juno.com

  24. LizP says

    I had 32 of the 36 questions as “yes.” I have had a history of these problems, but never knew what they were until I read “Depression Free, Naturally” by Joan Matthews Larson, Ph. D. I still struggle with the anxiety and fearfulness. I sometimes forget WHY I am taking certain nutrients, but the symptoms come back strongly enough to remind me severely. I am SO glad I found out what was causing my symptoms. Thank you for your wise and informative website. You are a godsend!

    Liz

  25. Michelle Coy says

    I too have just learned of this. I think it may be the key to helping my 19 year old son who is diagnosed with bipolar I (age 13), ADD (age 5) and Asperger’s Syndrome at age 16. He has had criminal behavior and reached puberty far later than his peers.

    Tonight he is hospitalized after an early morning suicide attempt. He has been living in a group home, has court next week and my father is dying. There is a great deal of stress. On site I was on earlier tonight had a small quiz. I took it and according to my results have a 77% change that I have a mild to moderate case. I then took the quiz answering for my son. His was at 87%.

    I need to know if there is anyone in the Indianapolis, Indiana area who is/has dealt with this. I am in need of a physician that will be open to helping me have my son tested and results interpreted as well as aiding in a treatment plan pending the results.

    We have been living in hell for most of my son’s life due to his issues which continue to worsen.

  26. nursewarriormom says

    These stories break my heart and our family has lived them. My email address is greathome@juno.com. We continue to see miracles in my son’s life since being treated for Pyroluria. We aren’t even on the full treatment yet (takes time to work up to 100%). I am watching a miracle and I when I read (elsewhere) that this diagnosis and medicine is quackery, I just want to scream. PLEASE seriously consider it. We tried everything, you name it. Psychiatry kept him alive, but as you know, alive isn’t good enough. Orthomolecular medicine is giving him a good life. We went to Drs. Mensah and Bowman (Mensah Medical) in IL.

  27. M'Lyss says

    Anyone asking about finding M.D.’s who treat this – you need to find an N.P. . ANY Naturopath will have heard of Pyroluria and be able to help. Many insurance programs DO cover Naturopaths – call the number on your insurance card and ask if you have any “alternative care” benefits. Usually it will be a small amount – mine was $200, but that is enough to get started. Also look up “low income naturopathic” or call and ask if anyone at a particular clinic works on a sliding scale if you are without insurance. Look and see if your area has a college that trains Naturopaths. They have student clinics usually. Also, the basic supplement dosage my N.P. put me on was

    30 mgs Zinc Picolinate
    100 mgs B6 and 25 mgs of P5P (two different types of vitamin B6)
    1300 mgs of Evening Primrose Oil
    10 mgs Manganese

    However, taking supplements without taking an initial urine test to see if you really are Pyroluric can be dangerous because you don’t have a provider who is guiding you. I do not recommend it, but as long as health and wellness are a for-profit industry rather than a basic human right in a country plagued with poverty, I feel perfectly comfortable sharing for free the starting doses of supplements a conservative approach would take. Good luck to you all!

  28. Emma says

    Hi, I have recently been diagnosed with pyroluria, and have been feeling better. However in the past week I’ve been feeling awful ( slight headache, tired, run down, dark circles under my eyes). Following paleo diet. Can’t work out what is going on. Has anyone else felt like this or know what it might be? Thanks!

  29. Pam says

    I am reading all of this for the first time. My son is 18 and will be a senior in high school in September. He has almost all of the symptoms for this, I feel like such a failure as a Mother. He was tested at a very young age with ADD, he was a loner up to about 10th grade. The boys he seems to hang around are not the best. He is very quiet , shy etc. I think he has bouts of depression. But can not ever really get him to talk to me, he text at extensive rate. It’s really the only way he communicates with girls , to the rate of about 15,000 in 14 days. He is a night person and stays up till 2 or 3 in the morning and then sleeps till 2pm. As I type this he is sleeping. He eats from 2 or so in the afternoon up until 12 or so midnight. He does not have his driver license yet , he does not seem to have that forward thinking. He is not skinny, but the mid section is heavy. Acne is bad , he does not seem to care about hygiene . He takes showers, but brushing teeth etc is a bit of a struggle. I need help, not sure what to do anymore. He gets very defensive when I try to talk to him, he yells a lot.

  30. Tanya says

    OMG I have 29 of the symptoms! I have to ask my doc to test me for this! As I scrolled through the list I kept thinking “This is me” And I’m on a Paleo diet already, I feel much better eating red meat, I’ve tried the vegetarian thing, I didn’t last a week LOL

  31. JR says

    I agree with Mark, Direct Health Care is the most accurate way to test and they take into account the dilution of your urine to get an accurate “correct” results. Their site is: http://www.kryptopyrrole.com.

    I also think if you are serious about getting healthy by Orthomolecular that you should get a full nutrition test to see any and all nutrition imbalances which can be detrimental to your health directly and cause negative chain reactions. This test is covered by your health insurance and the site is: http://www.spectracell.com.

    One more thing I recommend is to try to switch to an all organic diet as that is the definition of “real” food as there are no chemicals and it is not genetically modified which a lot of food is becoming.

    I started taking the B and Zinc vitamins and have already seen drastic results in 3 days.

    I hope this helps.

  32. ACurtis says

    For those of you who are unable to find Vitamin Diagnostics Lab, they merged with another company:

    The European Laboratory of Nutrients
    Health Diagnostics and Research Institute
    http://www.europeanlaboratory.nl/
    Health Diagnostics and Research Institute – 540 Bordentown Ave., Suite 2300 – South Amboy, NJ 08879, USA
    Tel 732-721-1234 – Fax 732-525-3288 – Email info@hdri-usa.com
    In 1995 Vitamin Diagnostics joined our organization (and changed its name) to provide better service both in U.S. and Europe.

  33. Jade says

    I was diagnosed with pyroluria a few years back, along with most of my family. Along with my clinical nutritionist we worked very hard with supplementation and diet to reverse the side effects. Regular hair analysis tests were able to show the changes in the zinc to calcium ratios (and a few other important ones). It was towards the end of this that new research came out pointing pyroluria to being a symptom and totally reversible. Just thought I’d pass on what I’d learned. Oh and since cutting sugar (and fructose) and working on my digestion – I feel fantastic. Oh and following Paleo – with no nightshades, limited nuts and seeds.

  34. Akash says

    HI, I just stumbled upon Pyroluria. I seem to have most of the symptoms, when I contemplate my childhood and adult years. I’m 23 and was diagnosed with Bipolar when I was 20. I live in South Asia and doctors here don’t have idea about it. The main test for it is not available for me and it is not possible for me to go abroad for diagnosis. Are there any simpler tests which can make sure about the condition? Also, is it risky to try the supplements without testing, as it has been said the symptoms decrease rapidly? Thanks.

  35. Jo says

    Akash, i can suggest a good book to get you started. “Depression Free naturally” by Joan Mathews Larson”. Get the paper version, not on your ebook reader. The title is misleading. It is an excellent explanation of biochemical imbalances, including pyroluria and how they relate to psychiatric disorders. There are suggestions for dosages of supplements. I am a mom trying to help my 23 year old son who also has been suffering his whole life with anxiety and depression.
    Good luck!

  36. Valerie Malloy says

    There are plenty of not so great tests for pyroluria so many people are are not getting positive results who should. Too much zinc or B 6 can lead to toxic problems so it is important not to guess at dosages and to get good quality testing done before and after treatment to make sure you are getting an effective dose. I also have found L glutamine (an amino acid0 to be very helpful very quickly. So many people have been affected by this hugely under-diagnosed problem. Most research is done by nutritional scientists rather than MDs. No pharmaceutical company will bother to research it since they can’t patent natural substances like zinc and B6 My family has been devastated for decades by this simple to treat illness. When will the medical doctors step up and take it seriously since it affects no less than 11% of the general population.? Well I can dream can’t I. Get tested please. Know what you are dealing with. Read. Thanks.

  37. jo says

    I totally agree about the testing. We are going through Direct Labs who will report the results to Mensah Clinic and they will consult with us. But for Akash, who claims that he can’t get tested in his country, the book may help.

  38. Stella says

    I went to the Bio-Center lab site as linked in the article to order the urine test, but didn’t see the category as listed in the article. Which test do I request?

  39. Kelly says

    I am pyroluric based on a positive test (26). My son has almost every symptom as well, including ADD like symptoms. I have never bought into the ADD diagnosis so he remains unmedicated to this day. My pediatrician nearly laughed me out of the office when I asked that he order the test! Any resources available to find doctors who understand pyroluria?? I am in Northern California…

  40. KRichards says

    Hi just wanted to add something, especially to nursewarriormum. My family has been treated with great success for MTHFR which is a genetic condition often linked to pyroluria. We will test for this now and hopefully the road to good health will continue. Nursewarriormum, I noticed that your son’s supplements included folic acid. It may be worthwhile for you to get your doctor to change this to methyl folate. If he has MTHFR (which is likely) this can be supported by a blood test, folic will not be absorbed like methyl folate, an active form of folate. MTHFR (please research) is a condition where there is a reduction in the enzymes that convert folate so our bodies can absorb it. Methyl folate does not need converting. Its worthwhile looking into, as some doctors treating these conditions still prescribe folic. This can cause lots of additional problems. If you are interested look into the good work of DR BEN LYNCH.

  41. Luci says

    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!

  42. Leigh Ann says

    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)!

  43. Meggie Sophia says

    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.

  44. susan says

    I just ordered the test through the Riordan Clinic. I score very high on the questionnaire.

  45. Meg says

    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 !!!!

  46. CINDY says

    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.

  47. maggie says

    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.

  48. amie says

    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

  49. Laurie says

    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:)

Trackbacks

  1. [...] Pyroluria. In pyroluria, the body can’t process sufficient vitamin B6. You can be born with it, in which case your life probably sucks, or it can develop from a long-term deficiency. Convincing your doctor to test for it might not be easy, but you can arrange it yourself for about $129. I used The Bio-Center Laboratory in Wichita, Kansas. The test does not require a prescription or blood draw but it does require careful handling — refrigeration, close timing, etc. Here is a list of symptoms. [...]

  2. […] I have set up an account with Direct Labs, a discounted on-line blood chemistry tests, and created my own account for your convenient use. All the tests I have gotten will be on the home page that way you don’t have to go hunt them down. I’ve taken the guess work out of it. DirectLabs.com/FredaMooncotch. The only test they don’t offer is the Pyroluria Test and why you might want to consider being checked for Pyroluria. […]

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