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Why am I so Edgy? Learn about Pyrrole Disorder (Pyroluria)

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Learn about Pyroluria disorder, a little known blood hemoglobin condition that depletes the body of vital nutrients. There are many symptoms of Pyroluria. You can have the condition even if you only have a handful of possible symptoms for Pyroluria. If you have more than a few symptoms you should get urinary testing done to see if this vitamin and mineral deficiency is your problem.
Pyrrole disorder is not a new discovery in medical science. It’s not commonly tested for, however. Study on this hemoglobin disorder has been ongoing since as early as 1958 when it was discovered by Canadian doctor, Abram Hoffer MD, PhD.

What are the Symptoms of Pyroluria?

Learn the symptoms of pyroluria, a blood hemoglobin disorder.

sxc.hu | author: Mike Johnson

If you easily agitated and a chronic insomniac, often waking up in the morning after what seems like a very short, dreamless night, you may suffer from Pyroluria. Perhaps you’re one of those people that never eats breakfast; instead you prefer to race off to work or school. Do you often forget where you just put something or what someone just told you? Maybe you also have a hankering for spicy foods and a huge gut to match. If you have a hard time handling stress, find most of these statements to be true about yourself and you are often unhappy or depressed it may be due to highly under-diagnosed vitamin/mineral imbalance with many names, but most commonly referred as: Kryptopyrroluria or KPU for short. Recent scientific research has more precisely renamed it:  Hemopyrrollactamuria  or HPL for short. The condition is also known as the Mauve Factor, Malvaria, Pyrrole DisorderKryptopyrrole Disorder,  even High Mauve and Hemopyrrollactame.

The symptoms of Pyrrole disorder or Hemopyrrollactamuria vary but may include:

Common Pyrrole Disorder Symptoms
  • lack of dream recall
  • white spots on nails
  • dislikes loud noises or bright lights
  • problems with menstrual cycle or sex problems
  • problems with depression
  • pale skin, skin that easily burns
  • insomnia
  • stunted growth, late growth spurt
  • prone to temper outbursts
  • likes spicy foods
  • better long-term than short-term memory
  • reading difficulties
  • ADHD symptoms
  • anemia (low iron)
  • protruding abdomen
  • delayed puberty

In severe cases other disorders may be present as well such as: OCD (Obsessive-Compulsive Disorder), Bipolar Disorder, severe depression, Tourette Syndrome, Schizophrenia, Autism, etc…

Getting Diagnosed with Pyroluria is Easy: Just Get a Urine Test

audio podcast of Dr. Albert Mensah interview on pyrrole disorder and depression.

Hear Dr. Mensah talk about pyroluria.

Through a simple urinary test this hereditary chemical imbalance can be diagnosed. It is treatable by taking a specified amount of Vitamin C, Vitamin E, Vitamin B6, Vitamin B5, Magnesium, and Zinc. Primrose oil or Borage oil is also sometimes included, as are various amino acids depending on the presence of associated disorders.

Pyroluria is a Genetic Condition, Chances are it’s in the Family

Pyroluria is another term for pyrrole disorder. A genetic condition, Pyroluria causes anxiety, depression and withdrawal. Sufferers can be any age, although most are not diagnosed until adulthood. Symptoms can be very severe or very mild and very much affected by levels of stress. It’s onset usually occurs with a traumatic incident and it may be accompanied by another condition: ADHD, Tourette Syndrome, alcoholism, severe depression, schizophrenia, Autism, Bipolar Disorder. All of these are different manifestations of Pyroluria.

Pyroluria is a Blood Disorder

When the body creates hemoglobin there is a byproduct called kryptopyrroles. The kryptopyrroles in Pyroluria sufferers multiply too fast and block receptor sites for B-6 and zinc. This creates a serious deficiency of these two nutrients.

According to Walsh, formerly of the Pfeiffer Treatment Center in Warrenville, IL: “Most persons with pyroluria respond very quickly to the B-6, Zn, C, E therapy… Major improvements are often seen by the 2nd day, and almost always by the end of the first week. The exceptions are:

  1. persons with severe mental illness (schizophrenia or bipolar)
  2. persons with other significant chemical imbalances
  3. patients with a major malabsorptive condition

When pyroluria is diagnosed along with another chemical imbalance, I like to track a patient during the first 6-8 weeks to determine which is the dominant imbalance. If major improvement occurs immediately, it’s because pyroluria has been corrected. Some patients report a nice early improvement followed by a plateau, and then another advance” [link].

What to Do if you Think you have Pyroluria:

If you believe you may suffer from Pyroluria, KPU, or HPL, it is best to speak with your doctor about it. It is always dangerous to treat yourself for any disease or disorder without the guidance of a medical professional. The information in this article is provided for informational purposes only and should not be used without proper testing and guidance from your medical doctor.

Hear a Healthy Family Radio Podcast about Pyrrole Disorder

On Friday February 22 I spoke with Dr. William J. Walsh PhD, of the Walsh Research Institute and Dr. Albert Mensah MD, of Mensa Medical about pyrrole disorder and depression. If you’d like to listen in to a 50 minute audio podcast on the subject, visit Pyrrole Disorder: Hear Dr. Mensah Talk about this Type of Depression.   For updates on all future interviews please like our Facebook Page .

Learn More about Pyroluria:

If you would like to visit a forum to learn more check out:

Thread at dr-bob.org: Pyroluria supps…my experience…it’s WORKING !!!

Thread at hastypastry.net: PYROLURIA & SEIZURES & CELIAC DISEASE: Aracadonic Acid, B6, D, and Zinc Deficiencies

For additional information about Dr. Pfeiffer check out:

Nutrition and Mental Illness: An Orthomolecular Approach to Balancing Body Chemistry (Paperback) by Carl C. Pfeiffer

To learn more about Dr. Woody McGinnis and his work on the Mauve factor visit:

Article at AlternativeMentalHealth.com: Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms

www.foodforthebrain.org/content.asp?id_Content=1693 to view the presentation, scroll down until you find Dr. Woody McGinnis and click.

To read about Dr. Klinghart and his work with Autism, Lyme Disease and HPU:

Download Forsgren’s article on Klinghardt’s work regarding Kryptopyroluria, available on the internet.

If you are a physician, please visit Dr. William Walsh at the Walsh Research Institute.

If you live in the Chicago area and are looking for a wholistic approach to treating depression, ADHD, mental illness or pyroluria visit Dr. Mensah and Bowman at Mensah Medical in Warrenville.


85 Responses to Why am I so Edgy? Learn about Pyrrole Disorder (Pyroluria)

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    • Caryn Talty says:

      Mild cases of Pyroluria won’t induce many of the more severe symptoms or conditions mentioned above. Vitamin treatments also vary depending on the person’s diet and the severity of the test results. Milder cases will resolve in 24-48 hours and more severe ones may take months, according to Dr. McGinnis.
      The most important thing to note, I think, is the fact that pyroluria often goes hand-in-hand with digestive/allergy issues. So it is a good idea to get testing done. In our son’s case his pyroluria resolved when he went gluten free.

  • Caryn Talty says:

    I just wanted to update that after a recent conversation with Dr. Woody McGinnis I have learned a bit more about the treatment of pyroluria.
    It is also associated with low glutathione levels in the body.

  • Kathy says:

    Hello,I have a student that has Pyrrole Disorder.I’m needing some information about this disorder.He is nonverable.I would like some help.

    • Caryn Talty says:

      There is not much information, but Dr. McGinnis is an expert and is writing a book about it due out soon. I can tell you that it can be managed successfully with supplements and diet. If the family is doing so then they would probably appreciate any type of observations you would have in the classroom, as the supplementation needs may vary depending on a variety of factors. Stress is a big trigger. The more stressed out the student is the more he releases kryptopyrroles and the more his body depletes itself. It is a snowball effect.

      Light sensitivity can be a problem due to low zinc stores. Your student may have difficulty with florescent lights and may have trouble with screen watching. Polarized sun glasses are beneficial when outside if you notice light sensitivities.

      If the supplements and diet are on target many of the uncomfortable symptoms subside and the person will not have many of these issues.

      Any type of stress will set things in a downward spiral so it is good to use a calm method of discipline (I am not sure the age or the cognitive abilities.) It is often present in other conditions– autism, tourette syndrome, learning disabilities, ADHD but not the only factor in learning issues. When anxiety is an issue transitions ought to be carefully organized and consistent. I don’t know if your student understands language but doesn’t speak, or lacks any language base. It may be good to incorporate a signal 10 minutes before, then 5 minutes before, then at the transition time (a bell, a short tune, a verbal cue).

      Use lots of praise. Kids that are much more advanced would benefit from reassurance when they are having trouble completing a project on time or have forgotten something important, etc….

      Problem solving needs good concrete modeling. With my son we used to role play stressful situations after the fact and recreate the situation with a more positive outcome. If the student is having a tantrum wait until he is calm to reteach appropriate behavior or model the transitional activity. A low functioning student might spend a day on transitions just to get the rhythm of the class under his/her belt. Sometimes my son used to repeat himself as a way to gain assurance. You may choose to calmly repeat yourself when you are giving directions or teaching something.

      I hope this helps. Nail picking and biting may be a sign that things are out of balance (some say that means you are lacking in your B’s)– usually my son chooses to do that when he is stressed out. All in all he is doing great these days. I attribute it to his diet and supps.

  • Kathy says:

    Thank you….he’s coming to Kindergarden next year.Will this be a stressful time for him?Should I push him to do things?

    • Caryn Talty says:

      Kindergarten is stressful with or without having pyroluria. If he is non-verbal maybe you could invite him to class with his mother for an initial visit with your current class or when it is quiet. Give mom a picture of you and the classroom aide (or tell her to bring her camera) so that she can reinforce the idea that ‘this is my teacher and this is my class’ to him over the summer. If he has an IEP then you will have no problems tailoring the lessons to his individual needs. I would not lower behavioral expectations to avoid creating stress. For example, if he bites someone you will need to be firm with your response. If you are calm and consistent he will respond positively in time to the rules of the class. Anxiety comes when there is a sense that there is no ‘control’, no consistency, and no structure. At least that was the way it was with my son. He thrived on structure and consistency, still does. Your student may have a talent that you can utilize too. If he is good at sorting you may want to give him a daily job to do, putting the scissors back in their metal holders, organizing the crayons, etc…. Ask his parents what he thrives at in the home. I might consider assigning him a classroom buddy too that can help him in social situations, help pack his bag, tie his shoes, bring him to lunch, take him to the office, etc….. You may be able to create a rotating buddy job so that each kid in the class gets the ‘privilege’ of helping him once a month.

      A quick idea:
      You could devise a laminated schedule for him to tape to his desk with images depicting the activities he will be doing throughout the day. His aide can then point with him, hand over hand, to the correlating image to emphasize what is now and what comes next. Once he gets into the routine he will have much less anxiety.

      You will probably see a lot of stress regardless of all your efforts in the first month of kindergarten. Be assured that once he settles down and gets comfortable things will go much smoother. Hopefully, you will look back in November and say, “Wow, he’s come a long way.”

    • Caryn Talty says:

      Kathy,
      you asked, “Does this disorder go along with any other disorder or does it stand by it’s self? I guess what I’m asking is …..can you have this without having anything else….”

      Yes, I think it can be a stand alone diagnosis. For sure. As with anything, there are mild to severe cases. Our Doc told us that it often comes with food allergies– most folks with pyroluria have low glutathione levels and they need to be high to have good immunity. So they can be prone to getting sick a lot. Sure there can be more severity coupled with other disorders but in those cases there are other biological issues involved.

      The vitamins do a GREAT job of keeping things going great. When you eat right and don’t get worn out you can sort of put it into ‘remission’ so to speak. Meaning, you won’t get so easily anxious, etc…. For my son a gluten-free, dairy-free, corn-free diet made a huge difference. He doesn’t eat artificial stuff either. No candies or junk food. He has no anxiety and has no symptoms of it right now. He gets a B complex vitamin every day, takes n-acetyl cysteine a few times a week for glutathione, and takes magnesium, and a low maintenance dose of zinc. (Reactive folks need higher doses, but it can be toxic so a doctor’s supervision is important).

  • Kirra says:

    Hi i just diagnoised with this disorder, i have started taking zinc, fish oil and a complex B. Wats next??

    • Caryn Talty says:

      It will take a while for your tissues to get saturated so depending on the severity of your condition it may be a few days to a few months before you will see a marked difference. Just make sure you are monitoring the supps with a doc, especially if you are taking high doses of zinc.

  • chris says:

    Hi, i just got my results back has borderline level 18..

    My main problem is anxiety, can anyone tell me what kind of supplement doses to take, im really not sure..

    Thank you!

    • Caryn Talty says:

      It is hard to say what you need as each person is different. Do you have a doctor you are working with? Dr. McGinnis suggests starting a supplement regime and then testing yourself on the supps within the first couple months to see where you are at. You don’t want to overdose the zinc. A person with mauve can need anywhere from 50-100 mg depending on their test results, age, weight, etc…. If you overdose it you will feel sick and nauseated. Sorry I can’t give you more info specifically. Extra B vitamins will be eliminated in the urine and are not toxic to the system.

  • heide says:

    I am pyroluric . My kryptopyrrole was 200 back in 1999or 2000. My doctor said out of all his patient over the years of studing this disorder , only one other person was higher at 300.My doctor said do not combine b6 and zinc they cancel out each other when you are pyroluric. That is so true . I broke out in hives from the sun,got very forgetful,anxious when I took them together.I felt terrible so tired all the time and very depressed.When I did what he told me b complex am and noon, zinc before bed I got better. Vitamin Diognostic Lab told me doctors don’t read the literature they send them and that you should take b complex and zinc 12 hours apart.

  • Robin says:

    Hello Cathy, I am Pyroluric as well, I found out 3 years and it changed my life as I knew it for the past 45 plus years. It also explained why I was the way I was without any type of medical pharmacy pills working. I have tried several. I also had epilepsy as a child which in what I have read also is shared by other pyroluric people. Depression, paranoid feelings, panic attacks, anxiety and more were daily feelings for me. I also picked at my fingernails until they were bloody, so many medical doctors and nobody could help me. Oh, forgot to mention this, I was also diagnosed as ADHD 5-6 years ago and so was son. I have the report but cannot remember the score as I am writing to you, but I can tell you my son is worse then I am and has never been tested. Knowing this runs in family, I sure he is. That all said, I now have an issue with my primary medical doctor – she wants me to cut down on my B6 as she is concerned that the toxicity is hurting me. I read in an earlier email that B6 will come out in the urine, but cannot convince my doctor and do not know how to do this. My job is being affected, which is high stress (I am in sales) and a top performer. I have cut my B6 down and now I am falling apart and feel like I am about to have a breakdown -I am also wondering about low glutathione levels and they need to be high to have good immunity, is there a way to test for this.
    It was lastly my understanding that pyroluria generally shows up in older teenagers and not in the younger years (you mention younger children) Any suggestions would be appreciated – Thank you

    • heide says:

      take bcomplex its not toxic in high amounts.

    • Jason Rogers says:

      Robin…

      Please note: I would caution simply taking a B-Complex. You may have a reaction to B12 or Folate. It is not uncommon for someone with pyroluria to also have either under-methylation or over-methylation. A B-Complex invariably contains FOLIC ACID and B12 which is devastating to someone who is undermethylated and pyroluria, and yet the if they are over-methylated, they have other needs. I cannot stress enough the importance of obtaining definitive guidance and support frmo a health professional. I would not want for your health to unravel or unwind. KINESIOLOGISTS are very good too!!!!

  • Robin says:

    Hi Heidi, thank you for your reply – I did receive an email from a Dr online and he told that I should not be worried about this as the main concern for this condition is that the B6 doesn’t stay in the system and is released through urine- so high amounts is not an important as long as the other supplements are taken as well as advised. Zinc is more toxic than B6

  • Kathy says:

    HI, what are the main foods teenage boys with pyrrole should avoid?

  • Steve says:

    I am an engineer with pyroluria and have had high cholestrol all my life and a pulmonary embolism from a blood clot in my leg. Here are the supplements I’ve been taking with good results.

    Vitamin C from Whole Foods buffered with bioflavonoids
    Unique E vitamin E
    Vitamin B6 from Whole Foods
    Niacin from Whole Foods
    B Complex from Whole Foods
    Mega GLA from Life Extension
    Mega EPA/DHA from Life Extension
    Magnesium from Jigsaw health
    P-5-P from Pure Encapsulations
    R Lipoic Acid from Geronova labs (RLA)
    Acetyl L Carnintine from Life Extension (ALC)
    CoQ10 from Life Extension
    Folate from Pure Encapsulations
    Methyl-cobalamin from Life Extension
    Zinc Lezenges from Life Extension

    I also take

    Resveratrol
    Pomegranate extract
    Hesperidin
    Curcumin
    Quercetin

    From what I’ve been able to find out Omega 3 and Omega 6 essential fatty acids go through a conversion in the body to get to usable forms. One enzyme needed for both conversions is D-6-D. This enzyme requires adequate levels of B6 and zinc to work correctly. Since pyroluria depletes the body of these the person with this condition is probably difficient in EFAs. By taking GLA the conversion from LA using D-6-D is bypassed. GLA is converted to DGLA which is converted to prostaglandin E1 (PGE1). PGE1 regulates cholesterol levels and the blood clotting process. The ogema 3 ALA EFAs also need D-6-D to be converted so taking EPA/DHA bypasses the need for the D-6-D conversion. Once the fats are converted the CoQ10 RLA and ALC help them get into the cells where they are needed and converted to energy by the cell’s mitochondria. The RLA also helps the Vitamin E and C work more efficiently. Since I’ve been taking this combination I feel great, the headaches have stopped and the nervousnees has gone away.

  • Janet says:

    http://health.groups.yahoo.com/group/Pyrroluria

    New Yahoo discussion list on Pyrroluria

    Many files and links, articles, videos.

    Please join us in creating a community of support.

    Thanks,

    Janet

  • Heidi Sommer-Ball says:

    Hi I was wondering if you could tell me if there is anywhere I could take my son for treatment, overseas or in Australia? He has been dignosed with Aspergers, tourettes, ADHD, obsessive compulsive disorder and oppositional defiant disorder and the latest is Pyroles disease. I think this fits because he has symptoms of all of these but fits the mold of none. I want to take him somewhere we can sort this out once and for all because ha has been dragged to specialists his whole life and he is over it. I want one last shot at sorting this out before he gets any older, I do not care what it costs and I will go anywhere!

    Please help Heidi

    • Caryn Talty says:

      Heidi,
      Have you gone to any alternative doctors or done any alternative treatments? There may be an underlying digestive disorder or could be a heavy metal toxicity. In our case I believe (can’t prove) that I had active celiac disease when I was pregnant with all three of my boys. Two of the three developed tics at the very same age (3 1/2) after the very same event (preschool vaccines). Both boys who developed tics (the first was MUCH more severe than the second one) also had the celiac gene when tested. The oldest had positive bloodwork we never did bloodwork on the second (if it looks like a duck, quacks like a duck, acts like a duck, it’s a duck). After ample research on how and why this could happen twice (by the time it happened to youngest he was already on a pretty clean, organic diet with a chemical free lifestyle– but not 100% gluten-free, as is required with celiac disease). Youngest also had not been vaccinated at all up until the preschool shots. Five days later he began constant eye blinking. We discovered after several tests that he had a severe systemic fungal infection. We began a strict anti-fungal diet which resulted in a bacterial infection that required antibiotics. Once that cleared we continued the diet for another month before he showed recovery. He is now on a strict gluten-free diet like his brother.

      FTIW, I had 13 metal fillings in my mouth while pregnant with all three. They were 25-30 year old fillings and I had them all removed last spring. I will write a post about that in the fall as to the side effects and results of removing metal fillings from one’s mouth. I will tell you that life is different with the fillings out. As far as treatment goes, it really depends on underlying or comorbid issues. If you suspect there may be gastrointestinal issues, you should contact Dr. Rodney Ford in New Zealand. He is a world-renowned pediatric doctor who specializes in gluten intolerance/celiac. There is also a place in the United States called Pfeiffer Treatment Center. They do clinics in various places from time to time but are located in the Chicago area. They deal with Autism, OCD, Behavioral disorders, and ADHD. They have not found as much success with Tourette Syndrome with their protocol. They deal with vitamin/mineral re-balancing. Dr. Woody McGinnis is in research in New Zealand these days and he is a colleague very familiar with the Pfeiffer Center. Perhaps you could try and contact him to find out if there are options in Australia or nearby New Zealand for you.

      As a mom, to a mom, my hunch is that there is a fungal issue and may be an underlying metals problem of some kind. This is common in the Autism community in the natural treatments support groups. Check out this website for ideas and information: http://thriiive.com for ideas.
      I wish you all the best in your continued search for answers. Don’t give up the fight.

    • heide says:

      Sounds like the low b6 in pyroluria.

    • Tony says:

      A leading doctor who specializes in treating children with learning difficulties, behavioral disorders and illnesses such as autism is Dr Annabel Stuckey in Double Bay Sydney. She uses the Pfeiffer Treatment Protocol as espoused by Dr Bill Walsh. Her treatment focuses on using nutrients – vitamins and minerals to correct biochemical imbalances. If you are outside Sydney she will give you a recommendation of a GP trained in these protocols.

    • Joy Daniel says:

      Hello Heidi, Our adult daughter has suffered health problems CFS/ME for years. She had always been well behaved & bright as a child & very energetic. She has had a very short concentration span up until now. She was recently diagnosed for Pyroluria & Lyme disease — positive for both. You can take your son to your local doctor for the urine special test for Pyroluria & if he is low on the test you will be overjoyed on his progress by taking just 2 simple vitamins, Our daughter Angie had to get both zinc & B6 from overseas. The transformation has been exciting to say the least. Angie was diagnosed by Dr Greg Emerson in Brisbane. Good luck. Hope this helps. Have a nice day. Sincerely Joy.

  • Steve says:

    I don’t know where you are located but you should definitely get his EFA levels and ratios tested. Where I live life extension has a home kit for $175. In the mean time I would try borage seed oil with about 300 mg of GLA. Once you get his EFAs tested you should supplement with the appropriate amount of EPA/DHA espesially DHA to get his levels up to normal.

    Steve

  • Robyn Wade says:

    My daughter has been diagnosed with Pyrrole Disorder in Oct 09. She is 16 years old. She has been taking special compounded vitamins of Pyrole Metabolic by Kingsway Compounding for coming a year. Her symptoms have subsided, but definitely are still prelavent – defensive, arguing consistently, causing her to be friendless, and as parents seeing her sitting alone day after day in the holidays. Her weight has ballooned in the past few years as food has become a solace. She left school two weeks ago and could not wait to leave, after a very rocky ride all through school. I have read that the opposite defiance is prevalent in children and teenagers but may wane during adulthood. As a concerned parent for my daughter, could you please give me some advice on how to handle my child and is there any support groups I could join in helping me deal with these situations at home.

    • Caryn Talty says:

      Robyn,
      I certainly don’t want to give you false hope, but I will give my unscientific personal ‘mom’ perspective. In our case our son was put on a compounded vit too. Curiously the compounded vit caused a slight increase in motor tics. My husband kept saying that he thought there was something in the vits. I kept saying that wasn’t possible. Anyway, after a short while we ended up getting our son food allergy tested as advised by another mother whose child was ‘cured’ of his tic disorder after she modified his diet. That test revealed that he had 15 food intolerances– corn being one of them and it was in the vits in high amounts! It was a huge burden for us to change his diet. One of the other severe intolerances was wheat (and it was the most severe). So I mentioned this on an educational forum after someone posted a wheat free fried zucchini recipe. I got a private invitation to join a celiac support group. So I did. They encouraged me to seek a celiac diagnosis. I had my son tested and low and behold he was positive.

      His pyroluria was moderate but he required massive amounts of vits to function at the time. He was only 4 when he was diagnosed. I have discovered (4 years later) that curing his gut through a gluten free diet has ‘healed’ him of the pyroluria. We no longer need the massive vits to get him functional. He still takes them in normal doses but the sky doesn’t fall down if we forget or miss. If he is under tremendous stress he will get cranky. But the daily meltdowns and the endless feelings of depression have subsided. He is naturally a more independent kid. He doesn’t crave social situations like his brothers do. He’s happy to read a book in his room. But he’s got friends that like him, and from what I hear he’s quite the funny guy in class at school these days.

      I spoke with Dr. McGinnis about digestive issues and pyroluria. He says there is a correlation and that it is something to investigate. You see, in a disease like celiac the small intestine suffers tremendous damage (called sprue) and this causes the body malabsorption issues. So basically the nutrients your child eats do not get absorbed and they end up nutritionally starved (even if they are overweight) because the villi have been destroyed and are not breaking down the food correctly. And you can get sprue from soy and probably even corn (although it is not proven yet in people but it will kill a cow).

      Every person is different. And every cure is different. I have to stress that. At 16 your daughter has probably already fallen into behavioral habits that seem familiar to her and that is why she continues it. She’s got to break out of the pattern. She may benefit from counseling and it may help if the two of you came up with a game plan when she is feeling fine as to how you and she will act when the spontaneous mood swing hits. Stay calm and focused at that moment and gently remind her of your plan and see if that helps. And be firm with your consequence whatever it is. Weight gain is possible with food intolerance issues too because it can lead to thyroid and hormonal issues. Just a thought. As far as support groups, I don’t know your exact needs, but you can check out Tough Love and see if it is a fit. Keep your chin up. If you truly seek the answers eventually you will find what works.

  • heide says:

    I heard low b6 causes low thyroid which causes high cholestrol. Mine went down once I had enough b6 in my system.

  • Julie says:

    Hello
    I have recently had a private test for Pyroluria, which has come back positive. I live in the U.K and approached my doctor’s to notifly them of the findings. I have suffered from mild to severe anxiety/panic disorder with several of the other classic symptoms of Pyroluria since i was 19, i am now 37. My doctors do not even recognise this disorder and are questioning the ‘alternative industry’ saying that bucket loads of cash are made of peoples backs every day, and to take it will a pinch of salt. This, as you can imagine, extremely frustrates me as they haven’t been able to find anything physcially wrong with me through standard blood tests over the course of all these years. I have one Urine test with my alternative practioner and have found i am positive. Is there anything i can do to get this documented onto my medical records and taken seriously? This is a gentic illness and i have a serious family history of mental illness, so i worry for my children. Please any advice would be welcome.

    • Caryn Talty says:

      Julie,
      There may be a possibility that you also have digestive issues too. In our case the genetic pyroluria was made worse and aggravated by a normal diet. We did further testing to find that celiac disease was an underlying factor. Keeping to a healthy gluten free diet has really controlled the pyroluria.

      Undiagnosed celiac disease can be associated with mental illness, particularly schizophrenia. There was a study done by Dr. Walsh in the United States quite a few years ago that found 33% of diagnosed schizophrenics had undiagnosed celiac disease. That is grossly more than the 1% in the general population. So maybe if your doctors won’t look at pyroluria treatment as ‘serious’ they may decide that treating a digestive disorder is ‘appropriate’. In our case we had to do very high doses of vits to saturate the tissues which were depleted. Once the tissues were saturated and the gut healed we tapered off.

      Now we only do a regular dose and things are fine. It is very important you don’t try to self-treat because vitamin doses can be toxic if you are not careful and monitored by a doctor. Pyroluria is commonly found in the autism community too, where food sensitivities are also often present and food restrictions can be beneficial. Celiac disease is only one possible cause for digestive malabsorption. Candida albicans can be a problem (this can be tested for by your doctor)– it is a fungal infection that can cause enzyme deficiencies and digestive problems, too. If you suspect any kind of digestive problems I would dig a little further down that road because it may be connected to your pyroluria. A change of diet may not cure your hemoglobin problems but you may find it to be a great tool for managing the condition successfully. This is the case in our family.

  • Jo says:

    Was just reading your comments on digestive issues and Pyroluria. I live in Sydney, my 4 year old son has been diagnosed with Pyrrole just recently. We have also been giving him a probiotic due to the research carried out on intestinal and digestive issues which quite often contribute to conditions such as autism and celiac. It’s amazing how many conditions are affected by bacteria in the intestine. A company called Entrapro makes a premium probiotic – it has even stopped my husbands hay fever and dust allergies.

    Here is the link: entrapro.com.au

    Thanks also for the comments of your sons wheat and gluten intolerance – we first suspected my son had a wheat intolerance when he first ate weetbix as a 1 year old. He would wake up every 30 min during the night, screaming and we couldn’t calm him down. He was also irritable during the day. It took weeks to realise it coincided with when he started eating weetbix. We haven’t yet had the allergy test done as it is expensive but after reading your comments I think it might be worth while after all!

    Thanks again,
    Jo

    • Steve says:

      It helps to take aloe vera juice with the probiotic.

    • Martina says:

      Hi I have a 6yr boy with pyrrole disorder. He has been on a compounded mixture for 3 months but just stopped as his moods seemed worse. Could it be too much vitamins for his system,
      Have you found any thing else that you found works well.

      Kind regards

      martina

    • Caryn Talty says:

      Martina,
      Has he been tested for digestive abnormalities? The vits could aggravate his system especially if he’s not digesting properly. For us the compounded vit was only half the fix. We discovered undiagnosed celiac and after 4 yrs we are still seeing the same positive result we saw after dx. We no longer need the heavy compounded vits because absorption has improved tremendously. Dx at age 4 and son is 8 now. He’s happy.

  • Jason Rogers says:

    This is all extremely interesting and absolutely vital to investigate further to understand. From my personal experience, I can say that:

    1) Comprehensive Testing is Paramount: Testing not just for Pyroluria but possibly related issues of HIGH COPPER LEVELS, as well as OVER-METHYLATION and UNDER-METHYLATION.

    2) Allergy Testing: I found that a Wheat/Gluten Free, Dairy-Free and Corn-Free Diet Works Best

    3) Taking Probiotics Is Crucial To Heal Potential Intestinal Permeability Issues and Leaky Gut Type Issues Caused by Reaction to the Allergic Issues

    4) Operating under the guidance of a skilled kinesiologist is KEY. Someone who practices PKP, NAET, NOT, NET and EFT. They can address issues in the body and impacts from stress that may be causing biochemical or neural pathways to go down.

  • Vicki Ingham says:

    To Heidi Sommer-Ball – I live on the central coast NSW. Look for a biochemical doctor – someone who specialises in body biochemistry and its effects. I have been going to a Dr Catherine Morris in West Pymble. Wherever you live, you should be able to find at least one doctor in the capital city.

    More generally, with regard to working out when and how much zinc to take, you can purchase zinc taste test kits at the chemist/pharmacy. If the product in the test kit simply tastes like water, then you need more zinc in your diet. If the product tastes really metallic and quite foul in the mouth, your zinc levels are ok. Its a simple test and gives a fairly accurate indication of your zinc levels. If it tastes like water, you take zinc at the recommended level until the taste test gives you the metallic indicator.

    I agree with the comment regarding getting the help of a really good kinesiologist. They can help with working out the quantities and supplements required.

    Regards,

    Vicki

    • Lynette says:

      Hi Vicki,

      I just read your advice. I am 47 was just diagnosed with Pyrolurua the central coast. Is it expensive to see a biomedical doctor?

  • amanda says:

    Caryn,

    I just heard about this disorder today. I recently went to my daughters doctor for a behavior appt. The dr recommended melatonin to help her get more rest. This has helped a lot with her behaviors, but my mothers intuition is telling maybe it is more than that. I am wondering if you can help me pinpoint symptoms in children. I have not seen many website that offer the information with children. My daughter (who will be 5 in a few months) does not have symptoms of depression. She is easily irritable and quite demanding. She has a tendency to have outbursts when she is upset. She is very particular and most call her a “strong-willed” child, which is very true. She has a very hard time working on school work or practicing writing her name. I was diagnosed several years ago with ADD myself. I am wondering if I should have both her and I tested. Is this a genetic disorder? How do I go about testing? Do I have to contact my dr or can I just get the testing on my own and then meet with him with the results? I am a firm believer in vitamins and minerals and think this could be an answer to my prayers.

    Thank you for your time!

  • Celeste says:

    I have almost all the symptoms on all the sites I’ve checked for information regarding pyroluria. I did the urine test (which the ten days without vitamins almost killed me, I was a wreck and could barely go an hour without sleeping) and it came back that I had a count of 13, which seemed to be within normal limits. I don’t really know what else to do…So since I apparently don’t have pyroluria…what looks like pyroluria but isn’t? I’ve often wondered what going one day without anxiety, mood swings, fatigue, and headaches would feel like. Now I feel like I might never know.

    I realize this is a difficult one, but thank you for your time!
    –Celeste

    • Caryn Talty says:

      Celeste,
      Have you ever tested your nutrient absorption levels? If your body isn’t properly absorbing nutrients it may be due to an underlying digestive disease. You can ask your doctor to test your levels for vital nutrients and then go from there. Those symptoms are also present in conditions like celiac disease, for example. But there are many digestive conditions that cause malabsorption.

    • Janet says:

      Check out the GAPS info, stands for Gut and Psychology Syndrome

      If you Google GAPS you will find much information on what else could be going on.

    • Angela says:

      Direct Labs would say you have borderline pyrrolia at testing at 13 (anything above 10.5). Also, NOTE – you may have “muted” test result – if your histamine is high and you are an “under-methylator” . I would suggest you take B6 (one 250 mg tab and P-5-P at 20 mg three x/ day), and zinc at 50 mg, . day (12 hours apart) and see how you feel. You probably need to take a primrose oil, and borage oil – capsule a few times a day — and extra calcium and magnesium, vitamin C – and E as well. You should have copper levels and histamine tested to complement interpretation of your pyrrole test. But taking the supplements and seeing how you feel may be the best way to know. See expert advise always.

  • Anthony says:

    Hi,
    I scored a 87.5 on the Pyrrole urine test. I have been taking compounding tablets (kingsway compounding) for four months now. I saw a quick result with my hair colour becoming richer and healthier, as apposed to dull and grey. My skin became healthier too.
    However I have not really seen a positive result in regards to mood and behavior. Maybe it is even a little worse.
    I am pretty bumbed that the compounding tablets haven’t given me the results I was hoping for.
    Should I check supplement levels? Be patient? I have seen a keniseoligist in regards to food intolerances and I have cut right down on dairy and wheat as a result.
    Thanks for your site, appreciate it.
    Anthony.

    • Caryn Talty says:

      Are you taking Omega 3s, 6s, and 9s too? These help with mood, and work best when you do not take them at the same time as your mineral supps. It wouldn’t be a bad idea to take another pyrrole urine test while on the supps to see if you are absorbing properly and if the new test puts you in the normal range while on the supps. Four months isn’t a long time, especially with levels like yours. It takes a long time to saturate the tissues, we were told. If you have a digestive disorder of some sort (celiac disease, for example) this will affect your body’s ability to absorb the nutrients until the gut heals. You may need to do a strong probiotic or anti fungal treatment to heal your gut if it is out of whack. Do you know your B12 and B6 levels with the compounded tabs? These assist with mood and energy levels.

    • Anthony says:

      Hi Caryn,

      Thanks for your reply. Knowing that It takes along time to saturate the tissues puts my mind at rest. I have read that some people see results in weeks and
      days, so that gives me patients.

      I am interested in getting some further tests done in regards to my digestion. My Keneseologist wants me to do six months on the sups before
      another urine test. I think your right to retest to see if the sups are working. Hopefully I will be in the normal range. Very interested in
      finding out the results in two more months.

      I am taking Bioceuticals fish oil (often at the same time as the sups!) which has omega 3, but not 6s and 9s.
      What is a good way to take all the omegas?

      I have looked at the sups, I guess some of these below translate into English. Not sure of the b6 and b12 levels??

      The sups have:
      Zink 25mg
      Pyridoxal 5
      Phosphate 25mg
      Pyridoxine 125mg
      Manganese 3.75mg
      Vitamin E 50mg
      Magnesium (ascorbate) 11mg
      Methlonine 375mg
      Folic acid 420mcg
      Thiamine (b1) 5mg
      Riboflavin 5
      Phosphate 2.5mg
      Nicotinamide (b3) 5mg
      Calcium Pantothenate (b5) 12.5mg

      Thanks again, It seems Pyrrole Disorder is more common and widespread than many people think.
      My family read on Wikipedia that it’s nothing more than another ‘snake oil’ that people made up to
      rip people off.

      Anthony.

  • Janet Perry says:

    There is an active Pyrroluria discussion list on Yahoo Groups that you might find helpful. There is lots of good discussion about supplements and tips on how to deal with both Pyrroluria and some discussion of Porphyria. You might find it helpful to have a community of people some of whom are being treated by Dr Klinghardt and other alt practitioners.

  • Rueben says:

    Hay All

    I Got diagnosed with Kryptopyrolia and under methlation didnt realise how many people this affected !! gosh
    I have been going to a doctor in brisbane (QLD) dr frank golik he is really knowledgable in this area and has really helped !! but yer
    would love some information on how to deal with the syptoms im so over work very stressed sometimes mildly paranoid and dont sleep very well at all and also very scattered thoughts !! its sending me nuts I also get the feeling of depersonilisation which is rather freaky sometimes !!

    I bought a fish tank with some nice fish i find that relaxes me a bit

    anyway i feel for you all :)

  • Ed says:

    Hi Caryn,

    my mum is chronic schizophrenia for 20 years and recently she took mauve factor test.

    Her result,
    mauve factor : 0.06 (range 0.00 – 0.08) and kryptopyyroles 7.50 (range 0.00-0.10)

    which indicate she is borderline mauve status. I will expect her to be positive , given her schizophrenia condition. I can ask if anti psychotic has any effect in lowing her mauve level?

    Thanks for your help.
    cheers
    Ed

    • Caryn Talty says:

      Ed,
      I can’t say whether or not the meds for schizophrenia would cause changes in her vitamin/mineral levels. But there are MANY correlations between undiagnosed celiac disease and schizophrenia.
      Check it out, and if she hasn’t already, ask her to consider getting herself tested for gluten intolerance/ celiac disease.
      For more info, check out celiac.com’s: Schizophrenia, Mental Problems, and Celiac Disease.

    • ed says:

      Thanks!

    • Angela says:

      There is some evidence that anti-psychotics can mute test results. However as many atypical anti-psychotics are anti oxidant and also anti-microbial,(anti-parasite) continuation of them is advised – also as she cannot stop taking them just to be tested. For schizophrenics, a hefty supplementation would always be advised: this includes all B vitamins in a complex*, extra niacin, B6 and zinc, C, and omegas (note fish oils every 4 days, and primrose oil and borage oil every day) — and a lot of vitamin D, as well as amino acids (see MAP). Then see if she get better. About 30% of those with signs of schizophrenia are testing positive for pyrroles. At the same time, and regardless, there is ample evidence that vitamin supplementation can help the disorder. I would get her to an integrative psychiatrist and discuss if you can. I am so sorry you have suffered as her daughter with this – and my heart goes out to you…

      * unless she has high histamine, in which case folate and B 12 should be avoided…

  • Chris says:

    Hi All,
    I always knew I had a zinc deficiency and have taken OptiZinc (Zinc Monomethionine) to fix that (only form of zinc that works for me, after trying many different combinations).
    Recently, I read of pyroluria, and think that may be the root cause of my deficiency.
    Can anyone please break down the pyroluria symptoms into 2 buckets: those related to zinc deficiency versus b6?
    Many thanks!!
    Chris

    • Caryn Talty says:

      Chris,
      A couple common symptoms of zinc deficiency are hair loss, light sensitivity, growth retardation (children are often shorter than peers and don’t seem to grow as fast), skin is pale and tends to burn easily, poor appetite at breakfast.

      B vitamins need adequate magnesium to absorb properly. P5P is a form of B6 that is very common for high mauve because it is more easily absorbed than B6. Skin rash is a sign of low B6– specifically seborrheic eczema. Chronic dandruff can be a sign. Neurological symptoms can also be a sign. Tingling numbness in hands, is an example. Many report an increase in mood when they take the B complex vitamins. So perhaps poor mood is a symptom of deficiency too. If you take B complex make sure it is high in B6 and that you also take magnesium too. Don’t mix your minerals with your omega fats either. Otherwise it will hinder absorption.

  • Mitzi says:

    Is a very pink underlying skintone a symptom?

    • Robin says:

      Hi Mitzi, Being pale in skin tone is a possible sympton or possibly scandinavian decent, so I would say yes as an answer to your question. I would also suggest getting tested for sure. It is a very simple test and costs around $55. Good Luck

  • Marian says:

    Hello,

    Can you please advise me of what vitamins are considered essential for someone with a pyrolle level of 55 and is undermethylated? And also, what time to take them during the day?

    Thanks,
    Marnie

    • Angela says:

      You really need to work with an integrative/alternative physician with such high levels I think. Each person is so different. It is not as easy as a recipe of supplements, as some people tolerate certain types of nutrients (like B6 as pyridoxine) and some need to take only P-5-P for example. My doctor advise 250 mg of B6 as pyridoxine and 20 mg P-5-P three times a day. so this works for some, if you want to try this. Different people tolerate different forms of zinc. Zinc requirements range widely – (until you taste metal in your mouth is how you know you reached required levels). So it would be wrong to say zinc amounts here I think. In our case it was 50 mg a day. More than that was metallic tasting. All the requirements will be needed according to size, sex, age, stress levels, other conditions, etc. Stress will raise pyrroles, even there is a range at different times of the day. Thus it is just a marker for an overall imbalance. Then its a vicious cycle: once your B6 and zinc levels fall, biotoxin and oxidination stress is almost always evident. Chelation (chlorella) therapy and GAP diets and staying away from wheat and dairy will help — but only supplementation will re-regulate the body – and then hopefully in 2-4 months – your system will be working again, getting rid of bio-toxins properly and producing enzymes needed for proper digestion, liver functioning well, etc.. However – you will need to take supplementation for a lengthy period – particularly at times of stress, change your eating habits (purify and simplify your diet) – and likely for the rest of your life. Sorry but I think there is not any easy answer/recipe …

  • Sarah says:

    Hi I’m not sure how long ago all these posts were written or if anyone reads this, but I’m desperate. If anyone at all can help me please I’m desperate for a good doctor in Sydney. I live in the greater west of Sydney and have been surfing the net for weeks trying to find someone who specializes in Pyroluria that can help my partner.

    He is 22 years of age and has been suffering all these symptoms for years now and has been in trouble with the law as a result of not being able to control his emotions, anger and feelings.

    We now have a 1 year old daughter and his mother past away 3 weeks before she was born which triggered his problem more and has been having anger outbursts, and feelings he can not explain to me.

    We had a doctor professionally test him for Pyroluria and he is 3 times over the normal for any human. We had medication proscribed from Kingsway. But the doctor said it wouldn’t be affective for 3 months . The post s I have read on this website said it should work straight away and see a difference in 1 week. He took it for a month and it did very little.

    It has been a year and still am fighting battles with it everyday.
    He says to me it’s something I can not explain and I feel different and I’m weird no one understands.
    I really need to be recommended to a good doctor that can finally help us.
    Thanks

    • Caryn Talty says:

      Sarah,
      Dr. Woody McGinnis is a premier expert in mauve factor/pyroluria. He is the director of the Autism House in Auckland, New Zealand. If you were to get in touch with them I am sure they would have a local reference for you.

      High mauve is tricky business. It takes much longer to saturate the tissues and requires a very high dosage. It may take three months before he feels a difference. I was in regular contact with Dr. McGinnis by email for quite a few months a few years ago. He told me that in cases of high mauve (off the charts pyroluria), the patient often needs dietary changes. Food intolerance and/or allergies are probable. Have you ever heard of Paleo Diet? Or Low Carb? It might help to try to implement that type of diet lifestyle.

      He also needs stress reducing habits that will help keep him from lashing out at the people he loves. Running, cycling, hand ball, tennis, anything at all to help him. Oxidative stress is a major factor in pyroluria. This basically means that a toxic lifestyle will make symptoms worse. Organic living and avoidance of artificial processed food products is helpful.

      As a partner to a person with this condition you need to learn how to react to him properly when he ‘flares’ up. I think you know what I mean. Do not engage in arguing, as his voice gets louder, make yours softer. Give him space. Learn to recognize his ‘mood’ and gage your behavior according to it. (In other words, if you know he is stressed, don’t mention the extra charges on the phone bill.) Household organization helps. Developing rituals helps. Dividing the household responsibilities helps. (You do dishes, he does garbage). Minimize the stress in your environment by being positive and not complaining to him about the baby or things that happen in your life when he is not home/with you. He is going to feel like he needs to help/fix your problems and this will add to his stress.

      If he works hard to keep up with the diet and supplements it will get better. His mother’s death and the birth of his first child in the same year is enough to spike his levels to that level. I don’t believe he will remain high mauve his whole life. Things will work out and get better. Just be that rock. Your baby needs a stable home life. You can do this. Do you pray? Pray. If not, meditate. Get yourself into a positive, balanced emotional zone.

      Omega 3 fatty acids are also crucial for mental health and combating depression. Cook a lot of fish, use flaxseed oil in your salad dressings. Add a good solid probiotic to your diets. Cut out the sugar in your diet. It’s tough when your partner struggles with pyroluria. At times it can be a very lonely place. Just realize that you are not the only person out there dealing with this.

  • Sarah says:

    Hi Caryn
    Thanks so much for your reply it’s nice to talk to someone about it.

    Do u have a number for that doctor in NZ ? I tried to find it on the net and had no success.

    Also the doctor who gave him the compounding tablets said he was not to have any omega 3 in his diet because his levels r way to high so no fish or anything of the sort.

    I struggle to get him to take his tablets as it is because he just gets so depressed and angry he won’t take them. He works away a lot and I can’t help him when he is away, the tablets come back. We have tried to see counselors to help this as well and he won’t listen he says to me there not in my shoes they don’t understand, I don’t have an anger issue its more than that. And they just make him more angry.

    He gets angry at the dinner table when I chew my food he said there is just this feeling in his stomach he can’t explain.

    I’m trying to stay positive but it’s so hard when I have an upset baby all day and then have an upset partner at night as well or someone who is always angry at me for no reason.

    • Caryn Talty says:

      Wow,
      I never heard that about Omega 3. I’m curious about why.
      Anyway,
      He has to decide he’s going to do this for himself. No matter how hard you want him to do it. The decision to do the course of tablets has to come from him. Otherwise you are fighting a hard battle and won’t win in the end. I understand your frustration and I know what you mean when you say it is hard being with someone who gets angry with you for no reason. But even though he might have a chemical imbalance he still has to exhibit self control. He can’t control his emotions but he can control his actions, regardless of whether or not he is taking the tablets. Best of luck. I hope someone at the Autism House can give you a good recommendation.

      Here’s the info:
      The Autism Center for Excellence Autism House ‘Ace Place’ Block A,
      First Floor 72 Apollo Drive Albany Auckland 0632
      P: 475 6030
      F: 475 6036
      PO Box 301
      147 Albany Auckland 0742
      info @ autismhouse.org.nz

  • Aman says:

    Give him 500mg Niacimamide and 500mg Taurine TWICE A DAY. Thatl calm his ass down n make him feel more at peace, try it

  • Steven says:

    * This comment was edited to remove certain personal information *

    Dear Caryn!

    I’m a 23 years old male and I think I have this disorder because it covers most symptoms I have found along with mercury poisoning (thanks to severe health anxiety…).

    There was a line where you mentioned eye tics after vaccines. There was a time as a child that I remember as getting eye tics from playing too much with the Playstation. Yesterday I asked my Mother about this and she said I remember wrong and that I had developed eye tics in kindergarten,and you say your children got eye tics from vaccine, then I ask my Mom and she says every child got vaccine then this was too much for my brain and I had a panic attack.

    I also read about the amalgam fillings. I had 3. At the age ~11 I was chewing a huge bubble gum and a big silver filling came out of my tooth and I swallowed it.

    In 2007 I couldn’t handle the stress and bullying in school so I went to psychiatrist.I was put on SSRI for 3 and half years.In 2011 April I quit it cold turkey (because my psycho quack didn’t inform me about that I SHOULDN’T DO THAT) and I’m still suffering withdrawal to this day 2012.02.09.

    It really messed up my brain, possibly my thyroid also. I learned that you need to deal with the root cause of the problems and the first problem that is 100% sure is getting eye tics from vaccines.

    I’m so mad knowing that I could have been a person without all this vaccine, pyrrole and mercury. Having friends, girlfriends and going to parties and living life the way one should and being taller, having education BUT NO. I want to kill myself now but first the people who put vaccines and amalgam fillings in me.

    Here I want to list you my symptoms,problems in order of developing:
    -eye tics (I outgrew them)
    -droopy eye lids (became less noticeable)
    -strong will
    -tongue-tie (still)
    -agression
    -eye floaters (getting worse)
    -tinnitus,ringing ears (not got better,continous)
    -visual snow (getting worse)
    -acted like if I wasn’t on the same level with my classmates,like I was 5-6 younger than them brain-wise (still)
    -incoordination
    -phobia of objects
    -dark circles under eyes,had it since child
    -mouth breathing (still)
    -emotional instability
    -hand tremor,head tremor (becomes severe in social pressure,stress)
    -loss of self-confidence,developed severe perfectionism
    -day dreaming,drowsiness
    -excessive saliva (I was spitting on the floor of my room, I was only age 11-12.)
    -started smoking
    -severe depression (still,got better)
    -severe anxiety (still,getting worse)
    -afraid to enjoy life
    -body very hairy (my back and chest and stomach was already hairy while my classmates started to develop armpit hair.but they DO HAVE FACIAL BEARD and I don’t)
    -severe phobia of dentists
    -crazy thinking,skizophrenic mind
    -racing thoughts
    -symptoms of estrogen dominance,hypothyroidism,mercury poisoning,adrenal fatigue,brain damage and so on…
    -addictions (though quit smoking 3 months ago,it was easy because I still have addictions like PC and internet which is too hard for me to quit)
    -lost all my friends
    -depersonalization
    -derealization
    -bruxism (more mercury = more fun!)
    -people label me as lazy,bug me why I don’t get a job
    -had to quit high school due to severe brain fog from SSRI use
    -delayed sleep phase disorder
    -phobia of hospitals and everything medical check up related (wanted to get myself checked with endocrinologist, she sent me to bloodtest in hospital. I had panic attack in the hospital. Don’t try to imagine it how worse it was…….)
    -hypoglicemic reactions
    -became from good looking to ugly
    -gained weight I couldn’t lose
    -white spots on nails (when I was 8-20 years old)
    -feeling of my heart beat,palpitations
    -OCD IS SEVERE……going crazy.SSRI made it worse.
    -sensitive to light
    -falling hair
    -all my joints are cracking, popping
    -feeling like there’s something in my throat,sometimes hard to swallow
    -after quitting smoking 3 months ago I still have shortness of breath
    -IBS? Don’t know for sure.For a long time,even before started taking SSRI I had some trouble swallowing food and also stomach acid rose to my mouth.
    -my hands get severly cold sometimes I need to put them on hot water,also my feet gets cold but that’s not severly
    -irritability
    -agression towards loved ones
    -mood swings

    Please help me where to start. Imagine all these problems everyday for the past year and most of them for your whole life.

    Thank you!
    Steven from Europe

    • aman says:

      Yo steven join the pyroluria group on facebook, http://www.facebook.com/groups/pyroluria/

      Alot of helpful people on there, and copy and paste your story on there loads fo people will help you!

      also check the docs section when they accept you into the group, ALOT of helpful info in the FAQs

    • Caryn Talty says:

      Steven,
      I know from our own experience that this is a condition that will worsen over time if it is left untreated. But with the right diet, lifestyle and vitamin/mineral supplements it is really manageable. Not knowing whether or not you have it, it is really hard to offer treatment advice. Pyroluria needs to be confirmed with a urine test and then needs to be checked with urine tests after treatment has begun. This is because there are vitamin mineral deficiencies that are pretty severe with some people who have pyroluria. They are given really high doses of supplements that would otherwise be unhealthy. I don’t know if you can get this type of testing in your country.

      Don’t be discouraged by this if you can’t get testing for it in your country. The good news is that you may be able to make some lifestyle changes that can help you feel better while you look for treatment. Lots of doctors have shown that mood problems and irritability and all kinds of health issues can be caused by stomach problems. Pyroluria is no different.

      Have you heard of the Paleo Diet? This type of diet may help you. You also need to help your immune system by getting a lot of exercise and time in the sun for vitamin D. There is a lot of information about chelation– this is what people do to get rid of heavy metals in their bodies. But much information is not accurate and can actually do more harm than good if you try to follow it without getting tested for heavy metal poisoning. The good news about heavy metal poisoning is that your body, when it is healthy and you are physically exercising, will naturally chelate toxic metals. I think if you no longer have fillings and if you are not exposed to dangerous toxic metals every day at home or at work (like a dentist is) then you are going to be okay in time.

      So try to look at the good, and not the bad. It is hard to do, but you will need a positive attitude if you want to feel better. Make a goal and plan how you will get there. Stay focused on that goal and don’t let daily disappointment get in your way or discourage you. Have faith. If you believe in God, pray. All this works to give you the strength you need to overcome this condition. I found that it was easy to look for the causes and to blame myself for things I did as a mother that caused the condition. But this is not helpful. It does nothing for the cure. In our case we changed diet and lifestyle and it was nine months before we could say it had worked. Know this. Don’t look for a fast cure. I promise if you do these things, and you try everything you can to eat whole, organic vegetables and a lot of them, you will improve even without an official diagnosis. And remember that you are in control of your own behavior, regardless of how you are feeling. You know right from wrong. So don’t go there when your conscious tells you not to. All the best. And good luck finding your cure.

    • Steven says:

      Thank you!
      I know I should seek help but this depression got so worse I can’t leave the house.
      Also,one must be careful with supplements like B6 and Zinc because it can upset the balance but in my place what would you do? Can it really worsen my life?
      I don’t think so.”If you never try you’ll never know.”
      Besides I will only try it for 2 days and hope something good happens.
      PS: after I quit smoking 3 months ago I already changed my lifestyle,started exercising,started eating healthier.No results.I don’t feel better.Will try taking the B6 in the morning and Zinc before sleep and report back.
      Steven

    • Steven says:

      Dear Caryn!

      I won’t experiment with the supplements.I will get the food allergy and histamine,copper,zinc levels checked soon.
      And if I do have Pyrrole,Pyroluria then YOU will save a desperate man’s life and I’ll be forever greatful!

    • Angela says:

      My son has had similar symptoms. He is taking respiradon at 1 mg a day (doctors prescription) after a real melt down last year. Then I started the supplements – and some of his symptoms got better. We give him: niacin (non flush) as insoitol 500 mg and vitamin C 1000 mg one half hour after each of three meals. No dairy, no wheat, no corn. He takes zinc picolinate at 50 mg in morning. B6 250 mg at night. Magnesium 100 mg with P-5-P 20 mg also after each meal, 3 x day. Vitamin E 400 IU./day, Calcium 500 mg/day, Primrose oil 1000 mg/2 x day, and omega 3 as fish oil every 4 days. Inositol tab is taken at times OCD gets worse. D3 with K is taken at 2000 mg twice a day to help his immune system and also as atypical antpsychotics dirsrupt D. We also just added biotin. We will start him on borage (GLA 300). We also just started chlorella and amino acids (MAP) this week on one doctor’s suggestion. He also takes plenty of probiotics. In the last two months – he feels much better. He is an under methylator (high hystemine) and while I have given him a B complex 100 tab also per day – but see that folate and B12 are not good for him – so will have to adjust this. I hope this helps !

  • heide says:

    You should take b complex b6 should not be taken alone. Anyone who takes b6 needs magnesium to balance .Some people with fatigue have epstien barr virus which goes along with strep throat. My doctor said you don’t have mono without strep and studies are showing strep can cause ocd.

  • Miranda says:

    Check out http://www.biobalance.org.au/ for a list of Australian/ NZ practitioners trained in Pfeffier protocol – that is a supplement approach to biochemical imbalances. There are also naturopaths offering testing and treatment but they cannot prescribe a compounded formula for taking supplements. If you need treatment you’ll need huge doses of particular vitamins and minerals tailored to your particular deficiency and having it made for you is the best way.
    Also good info:
    http://www.alternativementalhealth.com/articles/walshMP.htm
    http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria

  • T. Weitzel says:

    My daughter is being treated for this condition using a supplement program. She is feeling nausaus and even more tired than before. Any thoughts? She is on Effexor for depression.

    • T-
      I don’t have any experience with using RX for this condition. So I honestly don’t feel at all qualified to respond about using prescription drugs for pyroluria. I did look at side effects of Effexor, and nausea and fatigue are listed as possible side effects. I do know that using both a natural supplement and an RX can cause issues. Have you contacted the physician about this? As far as supplementation goes, an extreme vitamin mineral deficiency can cause major depression. Our doctor once prescribed a tablespoon of high quality fish oil for omega 3 to combat depression in our family member with pyroluria. I will tell you that the orthomolecular doctor who prescribed the pyroluria supplement program warned that once the tissues were saturated with the vitamins and minerals, especially the zinc, that the side effect would be nausea. This happened about three months into the treatment program. We were instructed to lower the dose, which we did. This did the trick. But I honestly don’t know how to respond for your situation because you are doing two separate treatments at the same time. It is hard to know what’s causing what. Do contact your doctor who prescribed the Effexor. You may have to stop one or both treatments temporarily to get to the bottom of it. Also, consider testing her for food allergy/ intolerance issues if you haven’t. This could also be contributing to her nutrient deficiency problem. We are currently managing very well with an organic gluten free diet. We’ve cut back on the high doses of vits and are managing great. We discovered celiac disease was an issue.

  • Dee De Lacey says:

    I just heard of pyrrole disorder this weekend after reading a story in the Sunday newspaper. I have had almost all of the symptoms for as long as I can remember and I’m over 60. I have been on antidepressants for 14 years. I will ask my Doctor if he can offer the testing. Does anyone know if the meds would interfere with the results? Cheers, Dee

    • Dee,
      I’ve put in an inquiry with the lab here in Illinois about how to go about getting testing in Australia. I figured something was up yesterday. This article got a slew of views from your part of the world this past weekend. I’ve also got an interview with Dr. Walsh coming up, too. So I will ask him general advice for doctors and patients about how to go about testing and treating this condition. He has an institute here in Illinois that trains physicians. He’s going to be in Australia in April of this year. I am very excited to learn about his work. I think it is long overdue. In our house the vitamin mineral treatments along with healthy diet have done wonders. I will keep you posted and will update with a comment as soon as I’ve got the right info. Thanks for posting a comment.
      Caryn

  • Lisa C says:

    Hi, my 10 yrr old daught has just been tested for kryptopyrroles, her test came back mauve factor 0.08 (00.08) and kryptopyrroles 10.00( 0.00-10.00) I was told it is borderline but as it is at the top of the scale is it still considered borline?? I’m just trying to educate myself with this whole thing

  • Hi Lisa,
    I contacted Direct Healthcare Access II Labs. Their public relations person was kind enough to respond to your question for me. This is what he said: ” In order for an accurate result you should receive a specific gravity report on the result. The specific gravity is a numerical value that defines how concentrated or diluted a specimen is. The term “mauve factor” comes from the color the specimen turns during the laboratory process. The numerical value you have presented as “mauve factor” is not a valid specific gravity for urine. So, I am unsure of what it means. The specific gravity must be equated into the result. So, overall your result should include the:
    1. HPL(pyrrole/Kryptopyrrole) level in the urine
    2. the Specific Gravity (Concentration or dilution of the specimen)
    3. the corrected Kryptoyrrole result.

    The Corrected Kryptopyrrole result is the HPL level equated with the concentration. These specimen requirements were created after a validation study was completed at the original Pfeiffer Treatment Center in 2005. It is not mandatory that laboratories use these specimen requirements, but it absolutely should be. These specimen requirements rule out false positives and negatives. Your daughter’s result is border line as this report indicates, but i do not believe the result to be accurate. If you are looking for accurate testing and M.D.’s highly regarded for treating pyroluria and many other conditions where pyroluria is often presented, please look into the following links: http://www.pyroluriatesting.com http://www.mensahmedical.com and http://walshinstitute.org

    I hope this helps.

    • Lisa C says:

      Caryn,
      Sorry I should have put everything that was in her result . the result came back as follows;

      result range
      Urine-specific Gravity 1.025 1.000-1.0.30

      Mauve Factor (HPL) 0.08 0.00-0.08

      Mauve Factor(Normalised) 0.08 0.00-0.08

      Kryptopyrroles(ug/dL) 10.00 0.00-10.00

      Does this seem a more accurate result I should of received.

      As this is all new to me I’m just trying to understand what Kryptopyrroles is and how to go about treating it.My daught is now just starting as yesterday zinc picolinate suppliment,activated B complex and Predop.So I guess I am hoping we are doing the best for her.
      I will be definately be looking at the links you have suggested.

      Regards Lisa

  • Lee says:

    Thanks for this great site, are you able to tell me what is means if you have low copper as well as pyroluria please? The Dr has put me on the b6 and zinc but I am worried this may make the low copper worse, i can’t get back to dr for a few weeks. Thanks.

    For others in Australia you can look for practitioners here :

    http://www.biobalance.org.au/patients/find-practitioners

    and here, this lab does the test (i think australia-wide) and there is a drop down box at the bottom of the page (hard to see it) that will search for practitioners in your state and NZ too.

    http://www.safelabs.com.au/urinary_kryptopyrrole_testing.php

    • Lee,
      You definitely have to get a proper response from your doctor on this one. There are different ways to measure copper in the body. When I interviewed Dr. Walsh about copper level abnormalities he did mention that it was quite rare, as the body generally regulates copper levels efficiently. I did find an interesting article about B12 deficiencies being related to copper deficiencies. http://onlinelibrary.wiley.com/doi/10.1002/ajh.20766/pdf. Are you vegetarian? Do you know what your B12 levels are? Another thing to consider is food sensitivities. When my son was originally tested they found high copper and low zinc levels with iron poor anemia. We later learned that this was likely caused by undiagnosed celiac disease. So there may be another underlying condition that is causing this symptom. It’s best to talk with your doctor about it when he/she returns. In the mean time, try to eat foods with good levels of copper in them and report any unusual symptoms right away.

  • Lee says:

    Thanks for that, my B12 levels are currently good though I am a “recovering vegetarian” so they may have been low for some time previously.

  • Karise says:

    Hi All – I just wanted to post some info and hope it helps people. I was very sick for almost 10 years before I found this amazing specialist in Sydney, Australia. You can find her if you google NPlus Clinic, Chatswood. Her name is Dr Janet Kim. She diagnosed me with coeliacs disease and pyroluria/undermethylation within 2 visits. I had spent tens of thousands of dollars and years of my life wasted being misdiagnosed by people. She is so amazing. I am not 100% better as it’s only been 6 months but I definitely feel a HUGE improvement. She is one of the good believers!!! She is a GP who specializes in nutritional medicine. Cheers.

  • Theresa says:

    There is evidence also that psychiatric illnesses are linked to dairy (specifically casein), so if you suffer from anxiety and especially if you love milk and cheese you might consider eliminating them from your diet as well as gluten.
    Below are two recent papers linking casein and mental illness.

    Association between bovine casein antibody and new onset schizophrenia among US military personnel. Schizophrenia Research 128 (2011) 51–55
    Schizophrenia is a pervasive neuropsychiatric disorder of uncertain etiology. Multiple studies have documented immune activation in individuals with schizophrenia. One antigen capable of inducing a prolonged immune response is bovine casein derived from ingested milk products. Increased levels of casein antibodies have been found in individuals with schizophrenia after diagnosis…. This is the first report to identify an association between the risk of schizophrenia and elevated antibodies to bovine casein prior to disease onset. Additional research is required to elucidate the complex genetic environmental interactions involved in the pathogenesis of schizophrenia and to identify potentially modifiable risk factors.

    Immune activation by casein dietary antigens in bipolar disorder. Bipolar Disorders 2010: 12: 834–842.
    Objectives: Inflammation and other immune processes are increasingly linked to psychiatric diseases… tested whether antibodies to bovine milk caseins were associated with bipolar disorder, and whether patients recognized different epitopes of the casein protein than control individuals. Conclusions: Anti-casein IgG associations with bipolar I diagnoses, psychotic symptom history, and mania severity scores suggest that casein-related immune activation may relate to the psychosis and mania components of this mood disorder.

    Take care and take control, educate yourselves, have a look at the website.. its not mental… I now believe there are mineral deficiencies, food intolerances, pyrrole disorder and methylation problems which are causing issues.

  • Kathryn says:

    Thank you, thank you, I too have recently been diagnosed with pyroluria. I am thrilled to have information and the name of a disorder, I have been trying to uncover for 20 years…. I have tried many dietary life style changes and now the time has arrived. I feel like Phoenix rising from the ashes…. I am alive, I have hope (the greatest gift) and now I have choices. A new direction of what food to eat and what suppliments to take. Instead of spending a lot of money on supplements, food, the latest new health cure that don’t address the real underlining problem – b6 and zinc along with other vitimins and supplements. My health is improving, I have been medically diagnosed as an acute/chronic asthmatic – and yes these where my symptoms, my breathing was laboured every day… but underneath I knew I wasn’t an asthmatic. How deluded when I would say, ‘I shouldn’t have asthma, there is something underneath that.’ Even metaphysically I couldn’t get to the bottom of the health and emotional anxiety issues.
    Well my life is becoming simpler and making new choices of the I food I eat is also simpler. Not easy at first trying to find recipes to satisfy my taste. My sugar addiction kicked in, a few weeks into my program, this to will change.
    I appreciate those who have gone before and are able to relate their experience to me and others. Thank you.

    Ps.. I still need guidance/ reference on new recipes to satisfy and knowing what snack foods to have prepared and put the sugar behind me. With Christmas two weeks away, I know it is crucial to my health and healing and not let food be my misplaced reward. I am happy and at last I have HOPE …. what a Christmas gift to me and all my family and friends…
    Cheers Kathryn

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Healthy Family is an organic living website. It's mainly written by Caryn, a busy mom of 4. We talk about nutrition parenting, and education on Healthy Family. You'll find easy, family friendly organic recipes, all gluten and corn free. We offer shopping tips, craft ideas for kids, and product and book reviews, too. Caryn often talks about being a mom, honoring her Catholic faith and traditions, and the importance of eating healthy organic foods. Contact us if you'd like.