Pyroluria is a genetic condition that is frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.
Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing these symptoms.
You can read more about pyroluria, sometimes called high mauve or pyrrole disorder here
Pyroluria is far more common that we realize and is not considered a real condition in conventional medicine or mainstream mental health.
I’d like to share the prevalence of pyroluria and the many related conditions/syndromes (other than those we have listed on the current Pyroluria Questionnaire from The Antianxiety Food Solution
I discussed some of this in my interview on the Anxiety Summit season 3: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results and in my Closing call 60+ Nutritional & Biochemical Causes of Anxiety and Recommended Supplements so here it is all in one place.
This is an excerpt from my book The Antianxiety Food Solution:
Joan Mathews-Larson is someone who I consider an expert on the subject of pyroluria. In her book Depression-Free Naturally, she reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics.
Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders.
According to McGinnis, pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome.
I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.
I thought it would be useful to summarize the above percentages for some clarity. I used some educated guesses to get some ranges we may expect to see. Keep in mind that the differing percentages are because of the different populations each practitioner works with:
- the healthy population : 11% (Joan Mathews Larson)
- adults with psychiatric/mood disorders like anxiety and depression: 40% (Joan Mathews Larson)
- children with psychiatric/mood disorders like anxiety and depression: 25% (Joan Mathews Larson)
- children with learning disorders and behavioral disorders: 25% (Abram Hoffer)
- schizophrenics: 30% (Joan Mathews Larson)
- alcoholics: 25% (Woody McGinnis and Abram Hoffer) to 40% (Joan Mathews Larson)
- autism spectrum disorders: 46% (Woody McGinnis)
- Down Syndrome: 71% (Woody McGinnis)
- adult women with anxiety and/or depression: up to 80% (Trudy Scott)
There are other related conditions where there have been reports of improvements in both conditions (when on the pyroluria protocol):
- Introversion – see my blog Am I an anxious introvert because of low zinc and vitamin B6? My response to Huffington Post blog. As of now 100s of people score high on both the pyroluria and introvert questionnaires and report feeling less introverted when on the pyroluria protocol (just read all the comments in this blog).
- Dystonia – see my blog that shares Jay’s story: Pyroluria and focal musician’s dystonia or musician’s cramp. As of now we have 2 people reporting resolution of dystonia and pyroluria when on the pyroluria protocol.
- Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy). Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD. She shared that the pyroluria protocol helped with her TBMD symptoms.
Other factors/conditions to consider:
- Miscarriage – Carl Pfeiffer observed that pyroluria is more common in girls and that girls in the family often look alike. It seems that boy babies are more frequently miscarried
- MTHFR defects – I have been hearing that many people with pyroluria also have one or both of the MTHFR polymorphisms. We know that methylation polymorphisms are a factor in miscarriages and it would be interesting to know if more boys are miscarried.
- Low histamine (histapenia) or high histamine (histadela) – many pyrolurics also have one or the other. I’m not sure of the prevalence but I’m sure Dr. William Walsh has some numbers which I plan to find.
- Chronic fatigue syndrome/CFS – the common issues with CFS and pyroluria seem to be low zinc and low iron, plus inflammation. You can read more here: Pyroluria and chronic fatigue syndrome: is there a link?
- Low oxytocin and social anxiety and autism – the common factors seem to be oxytocin receptor gene (OXTR) defects, low serotonin and low zinc
Other conditions that have a social anxiety aspect, a possible neurotransmitter imbalance with a likely pyroluria connection. These came up as questions during season 3 of the Anxiety Summit and I’ll report back as I find out more:
- Alice in Wonderland Syndrome. I don’t know if there is there a connection between pyroluria and Alice in Wonderland Syndrome (where the person sees large or small objects/people and often has migraines). I had never heard of this condition but my quick search had me wondering about the word “hallucinations.” The original work by Carl Pfeiffer was with schizophrenics who had pyroluria so it’s possible that there is a connection.
- Selective mutism I also don’t know if there is a connection between pyroluria and selective mutism. We do know that selective mutism often goes hand in hand with anxiety and social anxiety.
Both young girls with the above conditions did score high on the pyroluria questionnaire and it will be wonderful to hear if the pyroluria protocol helps them. I really do hope so!
Update: August 23, 2024
Osteopenia/osteoporosis – I’m exploring a possible connection to pyroluria given the role of zinc and vitamin B6, oxidative stress, anxiety and homocysteine in both.
One example are B vitamins (folate, B6 and B12) which help to reduce homocysteine. Elevated homocysteine increases anxiety/panic attacks and it also increases the risk of fractures. Also, vitamin B6 and the B vitamins are key for pyroluria and for helping to ease anxiety in general.
Another factor may be low zinc leading to low stomach acid production, thereby contributing to poor protein digestion and reduced calcium absorption – both important for bone health.
Other possible links include: celiac disease or non-celiac gluten sensitivity, MTHFR polymorphism, oxalate issues, collagen/joint issues, perimenopause/menopause and liver/gallbladder/bile issues.
I will be publishing an in depth blog with all the supporting research links and some case studies, so stay tuned.
If you’re new to pyroluria
If you’re new to pyroluria you can find the current Pyroluria Questionnaire from The Antianxiety Food Solution here.
There is an entire chapter on pyroluria in my book, The Antianxiety Food Solution, where I cover more of the back story, the exact protocol and nuances (for example using vitamin B6/pyridoxine vs P5P/pyridoxal-5-phosphate), testing and much more.
There are many blog posts on the site that address additional aspects of pyroluria – feel free to use the search feature when on any blog post or use this link to find the posts.
Wrapping up and your feedback
Now I’d love to hear from you – do you have pyroluria (or suspect you have pyroluria) and do you have any of the above conditions or do any of them run in your family?
Has addressing your pyroluria with the pyroluria helped you feel more social and helped any of the related conditions?
If you’re aware of any other conditions related to pyroluria please do share in the comments.
With the newest update on osteopenia/osteoporosis I’m particularly interested in your feedback on this aspect as I gather information for a more in-depth blog post.
If you’re a practitioner working with clients/patients with pyroluria I’d love to hear your insights too.
Feel free to share and ask your questions below.
Hi,
Thanks so very much for all you do! The summits have been wonderful! I am not able to purchase them at the moment but I hope to eventually. I have just become a certified nutritionist so that I can help my family’s health problems and hopefully others. I love to learn and am so thankful for people like you who are trying to get the information out to help with all the debilitating health problems so prevalent today. One of the issues that I haven’t been able to help yet has been my grand daughter’s anxiety. She goes to bed fearful and has nightmares almost every night. She just turned five and has had deep fear and anxiety since birth. She was born allergic to almost all foods my her mom, my daughter isn’t good at eating well. I try to do what I can to help. We all just did the zinc text and all are deficient. Fortunately the granddaughter’s eventual taste was sweet. That night was the very first night that she hasn’t had a nightmare. She woke up and promptly told me she dreamed that the floor turned into water and she got to go swimming and had so much fun. That dream could have turned bad since she had a swim scare as has been afraid of even taking a bath:( We will continue to work on the Pyroluria protocol as we can. Any suggestions for a liquid, good tasting B6 for children? Can I give a 5 year old the Primrose oil?
Thanks again soooo much!
Sharon
Good for you for going back to school to help your family and others. Thanks for sharing your granddaughters dream! Designs for health has a liquid P5P that is quite sweet and kids often like it. If you can I’d get fatty acid testing done.
http://www.drlwilson.com/articles/HOMOSEXUALITY.htm
i read on dr wilsons copper toxicity syndrome website that high copper can cause an individual to experience women smelling like men & men smelling like women & so they are homosexual, attracted to the same sex, not sure if this is true because i also heard on ABC radio interview with a scientist that research has shown that a pregnant woman exposed to a particular chemical at 23 weeks of pregnancy will disrupt hormones in the fetus and cause homosexuality, i cant remember the name of the chemical !?
Cheryl – this is the first I’ve heard of this and would like to see some studies supporting this. I could find nothing in pubmed
i read some where recently that you need B12 to develop speech, wonder if selective mutism may be linked to B12 deficiency?
Cheryl
I would always assess for low B12 but am not aware of a B12 speech connection and don’t see any research in pubmed. If you have a link to share that would be great
Maybe this is a good place to leave my comment on speech and selective mutism.
My daughter was diagnosed via Dr. Mensah with extreme pyroluria. She was slow in learning to talk. But at the time of the onset of progressive selective mutism she was 7 years old. First it was not talking to people whom she didn’t see during the week(only Sundays) , then after moving to America to everybody being new, no one heard a peep out of her for 11 and a half months. It was a miracle when she started smiling (lips were pressed together all day long even in her sleep. Eating/ drinking/ toothbrushing – done in extreme haste, unwillingness to let her mouth be seen open) and was willing after a number of encouraging prompting (after all, something had changed – her mouth was open to smiling) she started whispering and at the end of that day had agreed to talking with involvement of the vocal cords.
Bettina
Thanks for sharing your daughter’s wonderful story! I have seen connections between selective mutism and pyroluria. May I ask what protocol she was put on and how quickly she saw an improvement in speaking and other symptoms of pyroluria? Was it only the pyroluria protocol or were other nutritional factors also addressed?
Hi Trudy, thanks for your great work. You are very committed and provide a great service to humanity. Would it be possible to list the best supplements for and general dosage levels for pyroluria and the best times to take them?
Claudia
You’re so welcome. I start my pyroluria clients on 30mg Optizinc, 100mg Vitamin B6, 1300mg evening primrose oil (all at breakfast) and a copper free multi (breakfast and lunch)
why no copper?
Anita
Most pyrolurics have high copper and low zinc
I find that Standard Process ZINC LIVER CHELATE works much faster than any other zinc. I confirm with a taste tally (taste test). It seems that food-based products absorb better and that these patients have difficulty absorbing minerals in general.
Dr. S Daughtrey
Sally
Thanks for sharing. I have found great success with zinc monomethionine (Opti-zinc) but there are always some folks who need to switch
I have found complete relieve from anxiety and depression symptoms using your pyroluria protocol and also the aminoacids. I was wondering if you have seen problems with heart palpitations or arrhythmias after starting the protocol. Thank you so much for all the helpful information!!!
Carolina
I’m pleased to hear about the complete relief from anxiety and depression
But if someone has heart palpitations after starting any supplements I’d have them stop immediately. We often have to try and figure out which supplement is causing an issue – either removing all and adding one back at a time or removing one at a time.
If a client has no more anxiety and depression with the supps and has no adverse symptoms but then later gets heart palpitations then it may be that they no longer need a particular amino acid i.e. it’s now too much
I would of course always send them to get checked out by their doctor too
Hi Trudy,
I have MANY of the symptoms of pyroluria but I just did the zinc test with some liquid zinc (that also contained some copper and a couple other minerals) and it tasted HORRIBLE! I had to spit it out, the yucky feeling is still on my tongue. I’ve taken a zinc, b6 supplement from solaray and the 4 times I’ve taken it have had to run to the bathroom to throw up! Apparently it does not agree with me so how do I interpret that?
My anxiety continues and is turning into being stressed in social situations, I don’t let myself avoid places, I just power through but it is sooooo annoying. I know I can overcome this but I don’t feel like I’m seeing many results.
I take magnesium and a bcomplex which help. I also take GABA and 5-htp which help. I don’t take a multi or omega 3 oil but am thinking maybe I should? I do yoga, I eat clean, usually grain free but I have added sourdough properly prepared grains.
I take a homeopathic that helps with the tightness in my chest and helps relax me but I can’t do that forever…
I eat plenty of probiotic foods and make my own kefir, kombucha and fermented veggies. I work on my thoughts and keeping them positive.
I feel like I’m doing SO many things to help with this but there are still some holes. I am definitely hypoglycemic so I work hard to get protein at every meal and not let myself get hungry. I know my adrenals are shot from being stressed for years, and now that certain things in life are getting all figured out I still feel stressed, which is not fun when you have 3 little kids! I want to be calm, chill, and confident!:)
I am absolutely terrified of public speaking and have a couple bad experiences to back up this fear so thats tricky.
Do you have any recommendations for what I could do to help? What multi do you recommend? I found one by Thorne that doesn’t have copper. Thank you for all you do in raising awareness and alternative treatment for this issue. It is so prevalent and my goal is to continue my schooling in the field of nutrition and help others just as you are doing. Keep it up girl, you rock!
~Hannah
Hannah
I’m not sure if this is a combo zinc, B6 supplement and if yes, I’d switch to individual supplements as it’s much easier to manage.
With a strong reaction to the zinc challenge it’s likely you don’t need zinc. If you did need it, zinc should be taken in the middle of a meal to prevent nausea. And some people react to one form and not another.
You say “liquid zinc (that also contained some copper and a couple other minerals)” – this is not the zinc challenge which only contains zinc sulfate.
Low vitamin b6 is what causes the nausea so this may be the culprit too. Hence the reason for doing one at a time.
I like Designs for Health Twice Daily Multi
Glad to hear you’re wanting to help others!
Hi Hannah,
I know it’s a few years after your original post, but I had the same problem when first taking zinc supplements. My doctor suggested I use chelated zinc (you can order it on amazon) and my nausea went away!
Hope this finds you and helps!
I did completely eliminate my leaky gut with one dose of
Combantrin. while we would all like to think that all natural remedies are
better than anything big pharma comes up with, this is one where they
definitely got it right. I’d tried other tinctures because I suspected
parasites. Mold hadn’t occurred to me until I saw the documentary “Moldy”,
and it described my symptoms exactly, without also ascribing another dozen
potential effects. So, because it may help a great many people, quickly,
may I humbly suggest finding Combantrin or something similar in your
neighborhood. I’m Canadian and don’t know if it exists anywhere else.
Now for the controversial part; I got my leaky gut after a violent
reaction to a tetanus booster in the early nineties. This was before the
internet brought the fact that vaccines can damage the protective lining
of the gut to our attention. So, being that a vaccine brought on my leaky
gut and one dose of a single product, Combantrin got rid of it… do you
know of anyone else with leaky gut and perhaps other diagnosed illnesses
who can benefit from getting rid of leaky gut? I’m really not joking here.
Dr. Wakefield, amongst others found through his research that the damaged
lining prevents proper absorption of essential nutrients. Ones that have
had behavioral implications. I’m not saying it, but I’m damn well implying
it!
I agree that leaky gut is a big issue that always need to be addressed
I googled Combantrin and see it’s a de-worming medication
Hi Trudy. Yes, it is a dewormer. I didn’t have worms so far as I could tell, but something unwanted was living in my GI tract. Tinctures designed to rid me of parasites had temporary success only, but made a difference while they lasted, which was only hours. Then I could feel something grow back. The Combantrin lasted days, and even then, I’m not sure it’s permanent. But without the leaky gut, my brain fog disappeared too. I hadn’t been able to hold a thought long enough to write it down even as short a time as it is taking to write this in over thirty-five years. If anyone can figure out what else the Combantrin may have knocked out of me and what its connection to leaky gut and severe brain fog is, they could be doing a HUGE favor for a lot of people.
We’re you given combatrin by a doctor? I am looking to try this and wondered what else helped you
I asked this question earlier but never found the answer anywhere after the conference. Are you familiar with Diatomaceous Earth (DE)for parasites? You have to use food-grade but it is very reasonable. I have been using some from Lumino but would like to know if anybody else is familiar with it. Thanks Trudy for the great job you are doing because most of the doctors in our area don’t even believe you can get parasites unless you travel outside the country.
Jennie
I am not familiar with Diatomaceous Earth (DE)for parasites
Hi Jennie
I have used food grade diatomaceous earth (DE) for a month some years ago. I bought it to deal with parasites but also found it stopped me grinding my teeth, which had caused multiple cracked teeth . It worked for my daughter and her friends as well to stop grinding. Mine stopped after a week and has never returned!
I read somewhere that DE can cause micro bleeds in the gut so I haven’t used it again but I would use it short term again if I was worried about unwelcome creatures, ugh!
Cath
Hi Jennie & Trudy,
I have heard of DE. It’s harmless and multi-purpose as it can be combined with other things and made into healthy cleansers, an alternative to baking soda toothpaste etc. I did try it as a parasite cleanser, but not on its own, so it’s difficult for me to know how much help it was.
Hi Trudy!
I have recently been diagnosed with pyroluria and undermethylation. I have a severe leaky gut/ candida. What do you think is the best protocol (gut wise) for healing. I feel that I am reacting to everything still and my hands become red after certain foods.
Thanks so much.
Davina
I suggest talking to the practitioner who has diagnosed you.
My 2 cents:
(1) A strict candida diet and supplement protocol (such as garlic, oregano oil etc), probotics, fermented foods if tolerated.
(2) With leaky gut you need to remove the foods that are contributing to the issue. i also like glutamine for gut healing
With red hands I’d look into histamine-containing foods https://www.everywomanover29.com/blog/anxiety-summit-histamine-anxiety-depression-schizophrenia/
Question: I have long suspected I have pyruloria, but of course non of my docs knew anything about it, alternative or allopathic. I answered an overwhelming amount of questions that indicate that I probably do have it. I decided to just start taking supplemental B6 and P5P and felt tremendously better, I had already been upping my zinc due to hi copper. I took a urine test from Great Plains Labs AFTER I started supplementing and the results said “normal”, it registered at 7, whereas 20 is I believe a confirmation that you indeed have it. My question being, since I was taking the appropriate supplements to offset it, is it possible that the pyroles didn’t show up and I do indeed have it?
Sofia
It’s wonderful to hear you are feeling tremendously better! The recommendation is to stop zinc and vitamin B6 for a few weeks before testing, so yes this could have affected results. However we often see false negatives on the test. I use the questionnaire and response to supplements
Great thanks so much for the response. I like your line of thinking, response to supplements and questionnaire makes more sense. I think a large part of what has also helped is the Nutritional Balancing program I’m doing. I have extremely high copper and have been really working to get rid of some of that, still have a ways to go but figuring out the pyrole issue has been huge. Thanks again!
Pyroluria is showing up in a number of chronic lyme patients as being an underlying obstacle to tolerating treatment, and effective and complete recovery. It’s unclear if it’s the underlying factor or acquired as a part of the progression from the illness.
Jen
This is something I’ve been hearing – the Lyme pyroluria connection – but don’t know much about. Do you have some resources or links to share?
Confused – been on the pyroloria protocol 9 days now, started the zinc (30mg), b6 (100mg) and EPO (1300mg) and no change in symptoms, no dream recall at all. If anything sleep & dream recall has got worse, pre the supplements I could vaguely recall dreams… Upped the b6 to 200mg 2 days ago, upping the zinc to 60mg today and will monitor… It’s all a mystery…
Drew
Most people notice something positive within a week. If no good results after a month or so then we start trouble-shooting why https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Hello Trudie
Prevalence in histamine issues and mast cells activation disorder is 17% in healthy population and pyrrole is part of it. This estimation is by Dr. Lawrence B Afrin.
Also pyrrole disroder is big part of hypermobility Ehlers Danlos syndrome 3 and mixed connective tissue disorder 80% of us suffer with pyrrole in collagen issues. Often undiagnosed and professor Rodney Grahame says every 5 people in 30 people we meet have it.
Now there is a talk that hypermobility is induced by environemment. So epigenetics could reverse it.
Lion’s mane was my to go supplement with d ribose to get rid of social anxiety and feeling easily overwhelmed by stress, people
Maruschka
This is so interesting and much of it new to me. I’ve heard about the pyroluria hypermobility connection and problems with connective tissue disorders. I’m not familiar with the work of Dr. Lawrence B Afrin or professor Rodney Grahame and want to learn more. Do you perhaps have links to some of their work?
I am not familiar with lion’s mane combined with d ribose for social anxiety – but I’m glad you found a solution and I look forward to learning more.
I’m curious how you score on the pyroluria questionnaire and if you had the urine test done?
Thanks so much for sharing!
I’m looking for more information on the low zinc/miscarriage connection and also why boy babies are more likely miscarried. Can anyone point me in that direction?
Hi, Trudy. I somehow bumped into puyroluria awhile back and found that I exibited almost all the pyroluria symptoms i decided to try out the whole zinc+ b6 stack.
I’ve found it to be refreshing and a lot more calmer demeanor
I bought some liquid zinc and tried the zinc test and have found zinc to be sour and gross.
Does this mean that I should take the b6 without the zinc?
I also noticed that when i take zinc i start to get stomach cramps nausea and a generel upset stomach and that’s even with taking it with a meal.
Without a meal i get cold sweats and vomit. It’s happened quite a few times which left me wondering if i really am zinc deficient.
What can you advise me at this point?
Thank you!
Zee
When the zinc sulfate tastes disgusting it’s a good clue that zinc levels are good. A bad reaction to a supplement may mean you don’t need it.
Thank you!
Do you think it would be a good idea to just only take 50mg of b6?
Or does it need the zinc to work properly?
Typically both zinc and B6 are needed for pyroluria but some people may need just one or the other
Hi Trudy. I was wondering if you’d ever be interested on doing a post on Ehlers-Danlos Syndrome/Joint Hypermobility. I wonder whether many of your clients suffer from it and possibly don’t even realize. It’s a group of connective tissue disorders which had mostly been thought to affect only the joints, skin, skeleton and blood vessels, but it turns out that connective tissue is a necessary part of all organs and that there are much higher than expected incidences of anxiety, depression, chronic pain which is often labelled as fibromyalgia, gastrointestinal problems and more. I suspect a lot of people with EDS also have pyroluria, there are high numbers of people having to deal with PoTS and MCAS and very high levels of disability with it. I think that having connective tissue in the gut that might be more prone to tearing and leaking might make dietary changes even more important, but might also be one of the things that results in less good responses to nutrient therapies. As well as that there are so many people with EDS on cocktails of medications for pain, sleep, anxiety, depression, reflux, IBS, menstrual disorders etc. and I can’t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you’ve come across much? Thanks.
Catriona
It’s on my long list of topics to look into and learn more about and write about. I also feel there may be a connection to pyroluria. The gut connection you mention is an interesting one and makes a lot of sense.
There are a number of papers published in 2014 and 2015 linking EDS with psychiatric disorders. None mention social anxiety but anxiety is very common, as is depression. Here is one of them: “Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively.” http://www.ncbi.nlm.nih.gov/pubmed/26433894
As you can see in this blog post …Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy) may be related to pyroluria. Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD. She shared that the pyroluria protocol helped with her TBMD symptom.
I look forward to learning more and hope to hear from others who have seen these connections.
Please do share what you have seen personally and if the pyroluria protocol has helped with any of your symptoms.
And thanks for asking the question – it helps me to learn and I love learning so I can help more people.
Interestingly there is no mention of psychiatric symptoms on the website of the Ehlers-Danlos syndromes National Foundation http://www.ednf.org/
Please also see the comments above from Maruschka Bekaert
Hi Trudy,
I recently did a pyroluria test an came back at normalised 16, is it correct anything above 15 is a positive? If it came back at normalised 100 would the treatment still be the same or is it the fact I’m just above normal, that treatment should be easier?
I also have an MTHFR Gene Mutation (Compound heterozygous) and I’m trying a B12 currently.
Seems I won the lottery with my genes, just wondering if you’ve seen many people with mthfr and pyroluria ?
Thanks
Adam
Adam
Different labs have different ranges so I would check with the lab. If someone has symptoms I have them start on the pyroluria protocol regardless of results and have not found that result levels correlate with how much of the nutrients are needed.
It seems that pyroluria combined with MTHFR is very common.
Thanks Trudy,
Where can I find out about the pyroluria protocol?
Thanks Trudy,
Where can I find out about the protocol?
Hi Trudy
I took a regime for this issue two years ago. The doctor could never get me to a point where I could remember my dreams (even with activated B6) and I never felt any better. He prepared a compounding formula for me and said I was taking the maximum of all supplements.
I also have hypothyroidism and have torn the labrum in my hip (cartilage).
I am interested in the links mentioned by Maruschka Bekaert.
thanks Sandra
Hello Trudy,
I see where you commented some people with pyroluria may only need B6 or zinc. I started feeling tingling in my hands and feet about day 5 of taking Vital Nutrients B6, 100 mg. I started on Country Time P5P at 50 mg. as an alternative. Still tingling. Also experience erratic dizziness, possibly low blood pressure? Which I read may be a side effect at a Mayo Clinic link: http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788
It’s frustrating because I see improvement in anxiety, but not much in dream recall. Does B6 have a half-life property wherein titrating from smaller doses up to larger ones might work over time? Should I consider another brand…or conclude I have no need for B6?
(FYI: I also started with the other protocol in taking Douglas optizinc, 30 mg. and Now EPO. Long term supplements include Turmeric, Magnesium, D3, K2, probiotic, fish oil. I was taking a multi, but noticed it had copper, so discontinued it the second week of starting the pyro protocol.)
Thank you for any feedback you can offer.
Dana
Hi. Just listened to a video you did in 2014 as part of my research into pyrrole disorder as i think my 9yr old child has it. I noticed you didnt mention the violent moods that be associated with this but im sure you cant have everything included lol. Anyway lots of places mention it and its one of the many things my child exhibits as part of her anxiety. Now i am seeing connections i feel bad for making life even harder for her. Thinking too i may just have this disorder myself. Thanks for reading. Thanks also for your work in the area.
Anne-marie
Low serotonin is often a factor with pyroluria and rage and violent moods are a symptom of low serotonin. The nutrients for pyroluria also help to make serotonin but figuring out if tryptophan can help is something I’d address too. Low blood sugar and gluten may be factors too.
Thank you i will address that with my local naturopath.
Hi Trudy! Firstly thank you so much again for all you share!! I have just started the optizinc with b6 but I have interstitial cystitis and I’m wondering if th p5p might be easier on my bladder / system. Do you have any thoughts? Many thanks Gillian
Gillian
I’m afraid I don’t have an answer to that but since B6 is a factor with oxalates and there is an IC oxalate connection here is a link for you to read http://www.ic-oxalates.com/supplements/4569856725
Please come back and share if you do better with vitamin B6 or P5P and if you find oxalates to be an issue. It does seem to be common with pyroluria
Hi Trudy!! Thanks you so much for your kind reply and the information you shared regarding IC and Oxalates. I infact started the optizinc supplement with B6 and have increased from1 to 2 per day and seem to be able to tolerate them well. I do feel much more at peace although I have made so many dietary changes because of the bladder issues (giving up grains, dairy and sugar, it’s hard to say what has helped… 🙂
I just want to add that I am enjoying the anxiety summit immensely. And was particularly interested in your Vegus nerve story… I feel that I do have some Vegus irritation or damage myself. I have a hiatal hernia which I manage with lifestyle changes but have also begun experiencing inflamation/burning sensation in my throat and back of mouth from time to time. I had assumed these sensations might be food sensitivities but am wondering if the supplements and excerises you used might help repair/rehab my Vegas nerve too…? Once again many thanks for all you share Trudy. When natural healing methods are not covered by our medical insurance plans it is challenging.
Thanks for the update – glad you’re doing well and enjoying the summit. Making sure you found the vagus nerve blog too https://www.everywomanover29.com/blog/vagus-nerve-rehab-gaba/
Hi Trudy, Is there success with just taken Vitamins, Iv been told I have Pyrrole Disorder and have been given a list of vitamins to take. Is there certain foods I should be avoiding.?
Laura
Many people with pyroluria also have gluten issues. With everyone with anxiety I look at all possible contributing factors and address them too https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
I highly suspect I have this, as well as my daughter and son. Thought my daughter had selective mutism but she seems to have come out of her shell since we started a protocol for our EDS. (The Cusack protocol). I have started using a zinc cream which I was using for actinic keratosis and all of sudden started dreaming- I haven’t dreamt in over 15 years! Taking regular zinc by mouth in other forms never did this. I used to take b6 regularly bc it helped me with anxiety however that never caused me to dream either. But there is something to the zinc cream!
Theresa
This is very interesting since it’s typically the vitamin B6 that helps with good dreams and dream recall. Can you share the zinc product?
I’d also love to hear what parts of the Cusack protocol is helping with your daughter’s selective mutism. Is she also on the pyroluria protocol?
I saw relief with taking b6-zinc -and primrose oil for sociatal
Anxiety, but all of a sudden it’s not helping and I’m dealing with
Anxiety again ? Do you have any suggestions ?
Kelly
Pyroluria symptoms get worse when we are under additional stress and then higher amounts are needed. This would be the first thing I’d consider. It could be mental stress/trauma/worry/family death etc or physical stress (like accidental gluten exposure, parasites)
Hi Trudy, I am taking chelated zinc which is labelled as Zinc as bisglycinate. I read above that you only recommend zinc sulphate. Am I taking the right kind of zinc? I also take vit B1 Thiamine 500mg. Both are Solgar products. Is the Thiamine too much?
I use zinc sulfate for doing the zinc status test and not for supplementing. I can’t comment on specific doses via the blog
how are you tested for this?
Ruth
There is a urine test but because there are often false negatives I use the questionnaire and response to the supplements
I have a fair number of signs of pyroluria, but am not 100% sure. Do you think a urine test for pyroluria is a good idea and if so is there a lab or test company that you think is more accurate or better to use? I also read in an article on the web that pyroluria is a genetic metabolic condition, if this is true the 23 and Me test would show the gene it connected to. Do you believe it is a genetic condition and do you know what gene it is connected to?
Emma
Many people like to test but be aware false negatives are common. If you’re in the USA this is a home-order lab https://www.pyroluriatesting.com/shop/kryptopyrrole-quantitative/
Some consider it to be genetic others consider it to be environmental. I’m working on a blog on the genetics links so stay tuned – it’s a bit complicated
The Help her foundation lists pyroluria as a possible cause for Hyperemesis Gravidarum during pregnancy. http://www.helpher.org
Jennie
Thanks for sharing here – I found it on one of the forums here http://www.helpher.org/forum3/viewtopic.php?t=49006
Hi Trudi, I have recently come across your work after listening to you on the Bioceuticals fxMedicine podcast. I am a final year Naturopathy student (Bachelor of Health Science) and was diagnosed with Pyroluria a few years ago. It is now under control and am feeling like a new person. I suspect my son may also have polyuria but being in his late teens, it is difficult to get him to take any supplement regularly and it is an expensive regime to test and supplement if he doesn’t take it seriously! I am working on it and hopefully in a few years when he’s slightly older he will take enough interest to want some help with it.
However, I believe he has Alice in Wonderland syndrome. I have taken him to GP’s, pediatricians, optomestrists, opthamologists and no one knew what was wrong. I spent about 6 months researching the possibilities myself and came across AIWS. When I showed him some of the journal articles, he was so relieved to finally have an answer. Since then, I have had gut feeling that pyroluria and AIWS may be linked somehow. Do you have any further resources or health professionals that I might be able to reach to regarding AIWS? I find your work fascinating and I want to thank you for getting the message out there.
Hi Sallie
Glad you enjoyed my Bioceuticals fxMedicine podcasts and find my work fascinating. Really glad to hear you find like a new person with your pyroluria addressed with the right nutrients.
It can be challenging with teenage boys (and is always challenging working with a family member) so finding the motivating factor is a big driver – maybe a desire to socialize easily? And meet girls? And then finding the ideal protocol so he gets results quickly so he wants to continue. Perhaps ask him to give you a month? Could the possibility that it may help his Alice in Wonderland Syndrome be a motivation?
To answer your question, yes I suspect there may be some overlaps with pyroluria and Alice in Wonderland Syndrome and have it on my long list to blog about. I’m gathering resources and feedback from others are seeing a possible connection.
Would you mind sharing the pyroluria symptoms he experiences and the Alice in Wonderland Syndrome symptoms he experiences? Have any nutritional interventions helped with either? And does stress make symptoms of both worse?
Thank you Trudy. His pyroluria symptoms include being anxious, inner tension since childhood and will do anything to hide the feelings, nervous exhaustion (not very often however), only remembers his dreams if they are nightmares or very stressful, prefers not to eat breakfast, leans towards vegetarianism if given a choice, white spots on fingernails (although when he remembers to take zinc they disappear), pale skin but as he gets older he tans rather than burns, will get 3-4 colds per year (much more than the rest of us) and takes over a week to recover (“man-flu”!!), hayfever, sugar cravings, mother is from all-girl family, avoids stress to avoid being upset, very easily upset by criticism but will internalise it and catastrophise it.
My understanding is that his AIWS may have been triggered by an infection when he was around 6 years of age. He developed sudden onset of vomiting, fever and delirium. Still to this day, he distinctly remembers this night and recalls (like it was yesterday) not being able to stop looking at his hands because they were changing size and how far away/close up they were. I remember thinking it was the fever that was causing him to say weird things. After that particular episode, he began sleep walking, having night terrors – waking up and wandering around having conversations which made no sense. Sometimes we would find him in the shower or the laundry, shaking, talking nonsense, banging on walls. He has no recollection of this the following morning. Once he was old enough to articulate what he was experiencing, he was able to tell me he feels weird, like he needs to go to a pitch-black room and lie down. Sometimes it coincides with a headache. Everything suddenly appears as if far away then everything either looks really far away but massive or really close up but tiny. He feels dizzy while this happens also. Stress definitely increases the number of AIWS episodes. I’d love to hear your thoughts and any further research you have come across. Thank you for your time. Sallie.
Sallie
Thanks for all this. I’d highly suspect pyroluria to be a factor in someone with these symptoms, and the fact that AIWS symptoms are worse under stress is a big clue too. There is an infection connection with so many conditions and it’s also reported as one (of possibly many) root causes with AIWS (as I’m sure you’ve read about): “Reported causes include infection (especially with Epstein Barr virus), migraine, epilepsy, depression, and toxic and febrile delirium https://www.ncbi.nlm.nih.gov/pubmed/29151098.
As you know infections are common as mental health triggers – PANDAs and strep is one of the classic examples – more on that here https://www.everywomanover29.com/blog/kid-not-crazy-panspandas-awareness-day-2017/ The big thing for this is sudden onset. Strep is well known as the cause but it can be any infectious agent. Has OCD ever been an issue?
I’d check how his symptoms cycle as a clue that they may match parasite lifecycles. I’m not sure if EBV symptoms cycle. Infections are a stress on the body and make pyroluria symptoms worse too.
Hi Trudy, I love your book and anxiety summit ive learnt so much.. I’m wanting to follow the pyroluria protocol but have been having problems absorbing zinc for the past year. My naturopath put me on liquid zinc due to all my stomach issues as he thinks i have low stomach acid and it tasted like water with a slight metallic taste but tasted fine the whole time and never got worse after having 2 bottles. He then got me to try capsules of zinc with selenium for a few months but then after doing the liquid zinc test it tasted like water. Is there anything or brand of these supplements you’d recommend for me as I want to be able to take the zinc and vitamin b6 asap as I have chronic social anxiety and don’t want it to hold me back in life anymore i also think I need to take l-tryptophan and chromium but I think its because of possibly having leaky gut that I can’t seem to absorb any nutrients. Looking foward to your reply, Many thanks Bec.
Rebecca
Evening primrose oil helps with zinc absorption and it’s also important to have enough stomach acid. I do find that opti-zinc is a good form many of my clients absorb well. You can find these on the supplements blog here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
If someone has pyroluria does it take consuming a higher zinc level than other people for their RBC or WBC blood test levels of zinc to fall in the normal range than someone who does not suffer from pyroluria? Or would people with pyroluria taking higher levels of zinc like 50mg cause they blood work to typically be outside the normal range and show their zinc is too high?
Kim
I don’t do testing of RBC/WBC zinc as these tests are not always a good reflection of zinc status. If testing was to be done I’d look at plasma zinc and serum copper ratios. When you ratio plasma zinc to serum copper what you’re looking for is a ratio of 1 to 1. More here https://www.everywomanover29.com/blog/zinccopper-balance-in-autismpyroluria-dr-usman/
I thought this was interesting. The whole time I was reading it I was thinking Pyroluria. B6 and zinc recommended for copper toxicity http://www.arltma.com/Articles/CopperheadsDoc.htm
Jennifer
Thanks for sharing – great article – many symptoms are similar to those with pyroluria. It’s interesting that there is no mention of low zinc impacting stomach acid levels and contributing to meat/animal protein aversion
Hi Trudy,
Thank you for all of the work that you do. My 15 year old Anxiety/OCD daughter recently tested high for kryptopyrroles ( 47!!) and was put on a protocol of 30mg zinc, 50 mg P5P, and 50 mg B6 daily. We went into the B6 slowly with 25mg and are upping it to 50mg this week. So far I don’t see any bad side effects- but I’m aware that there may be some down the road if she’s dumping copper- I’m told that calcium will help offset some of the unpleasantness of copper dumping- is this true? She also has the C/T mutation and has an “intermediate” pathway for methylation according to an Organic Acid Test. She has done poorly on Methyl B12 and Methyl Folate so she’s no longer on those, but I want to support her B12 and folate with natural food choices. She’s eating more meat protein, but doesn’t like vegetables so I’m wondering what food choices she can get her folate ( and additional B12 from) and if this is the best route to go. Is there a site or resource you can point me to specifially for best food choices for undermethylators? She’s also on vitamin D3, Vitamin C, Magnesium, and Inositol. She does not take a multi or a B-complex at this time. Thanks so much!
Bernadette
I’d suggest finding ways to cook veggies so she’ll enjoy them because – as I’m sure you’re aware – there are so many other benefits. I’d try roasted with coconut oil, steamed and drizzled with melted butter or made into a creamy soup. Here is a cauliflower bake recipe that teens love https://www.everywomanover29.com/blog/cauliflower-garlic-bake/
I’ve just recently found your blog and I want to comment that I am very impressed about the content here. I would like to have a consultation with you but it seems like you are not taking any new clients 🙁
I have Pyroluria, high free copper, MTHFR (homozygous C677T). I came across a clinic back in 2015 where finally some mysterious conditions and symptoms were answered. I’ve tried different compound supplements (prescribed by MD) but it seems like we can’t seem to find the perfect combo for me.
From being an undermethylated back in 2015 with horrible brain fog, low energy, poor short term memory I turned to overmethylated with Pyroluria.
I do have social anxiety (very uncomfortable in a large group of friends, I can’t stand any small talk), I am being judgemental, I feel inner tension, I have left ankle and calf stiffness and I don’t wake up rested even when I sleep 9 hrs.
I’m a mess and need help! Please let me know as soon as you start taking new clients.
Kay
Thanks for your very kind words! My book “The Antianxiety Food Solution” is a great place to start with dietary changes. It also has an entire chapter on pyroluria. For consulting you can sign up for the waiting list here https://www.everywomanover29.com/services.html and find some other helpful resources
Hi Trudy,
I’m not sure if this has ever been found to be a connection, but I have been diagnosed with Pyroluria and have a lot the the associated issues including MTHFR and high histamines.
I didn’t know about the issue with oxytocin…I’m wondering if that was the reason why I found I wasn’t producing enough milk when I was breastfeeding?!
The stress of an emergency caesarean may have been a contributing factor to increased pyroles…thus affecting oxytocin and milk production? Second pregnancy was a scheduled caesarean, but was diagnosed shortly after the birth as having had glandular fever in the last trimester of my pregnancy..I thought I just had a flu. After the birth of my second child, I had chronic fatigue, pain from internal stitching…and again, difficulty producing enough milk for breastfeeding. Stress- pyroles-low oxytocin connection to difficulty producing breast milk??
Verona
All very possibly connected – yes
I had the same situation with my emergency c section and producing breast milk. What helped me was pumping every two hours to get the supply up. And tea and supplements. Didn’t know sanitize pyroluria yet tho.
Where is the best place to order & take the pyroluria urine test?
Lindsey
This lab does the pyroluria test https://www.dhalab.com/shop/kryptopyrrole-quantitative/ but keep in mind they also have false negatives so I always use the questionnaire and response to supps. Please let us know if you do the test and if it correlated with your symptoms.
I had read somewhere that both iron and zinc compete the for same receptors. So if one were taking high doses of iron supplements for anemia and Vit B6 100mg but stopped only 24 hours prior to the urine collection, would it create a false elevation in the kryptopyrrole result since the iron could outcompete the zinc?
Holly
I have not heard of this being an issue
Thank you Trudy. I have osteoporosis and Pyrroles. My son also has autism. I would love to read some pages that might link things together. I give my son zinc but he has CBS++ so B6 reevs him up. He def needs it tho.
Thank you for all you do x
Debbie
Thanks for sharing – may I ask the age you were diagnosed with osteoporosis and pyroluria ? And what age you started the pyroluria supps zinc, vitamin B6 and EPO – hopefully they are helping with social anxiety and other pyroluria symptoms?
I find small doses of vitamin B6 throughout the day can help some folks who benefit from it and dome folks do better on pyridoxine vs P5P and vice versa.
Feel free to click the many links in this post and use the blog search feature top right to find related posts on your subjects of interest. My book “The Antianxiety Food Solution” has an entire chapter on pyroluria too. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Hello Trudy! Thank you for everything, all the research and connection.
My story- I am 63yrs old, with osteoporosis in hips, joint pain (auto-immune thryoid issues), in oxalate recovery for 3yrs, gone carnivore. Under MTHFR and definitely genetically pre-disposed to pyruloria. Have had my genetics done and have the COMT and MTHFR snp’s quite a few…. anyway, have suffered, mental illness to the extent of having ECT treatments in menopause. I have recovered from alcoholism 28 years ago. Did not do much bio-chemical repair and also had lots of hypoglycemic symptoms… as diabetes is genetic in my family as well. My daughter and son both suffered PTSD and Psychosis, joint pain and allergies/asthma. The genetic connection is extreme in my family as my mom had post-partum psychosis and her spine and bones we completely deteriorated before she died.
My bone problems have also been in my jaw with necrosis and many surgeries… I believe between MTHFR and Pyruloria this has happened more so than oxalates. Continuing to research and will get my Kryptopyrolles tested by DHA labs. Currently enrolled in a course with Cristina Vaselak- Amino Acid therapy! Amazing. Thank you so much Trudy for this platform.
Lorie
Thanks for sharing your journey – may I ask the age you were diagnosed with osteoporosis and why you feel you are “definitely genetically pre-disposed to pyroluria”. Having one of the MTHFR polymorphisms is one factor. Curious how you score on my pyroluria questionnaire https://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/? Keep us posted on urine results but keep in mind false negatives are common.
Congrats on your recovery from alcoholism! It’s also common in pyroluria and hypoglycemia can set some folks up for addictions so yes there are many connections. Christina Veselak has a big addiction focus and her amino acid work is excellent. I know you’ll learn so much.
Interesting about the oxalate issues too but we are seeing links to osteoporosis, joint pain, thyroid problems, diabetes (there is a kidney stone connection so presumably dietary oxalates too), mental health issues and I suspect impacts on liver and bile production (further affecting bone health because of poor fat absorption). Oxalate issues also affect B vitamins, calcium, magnesium, zinc – all key for bone health.
I’m sorry to hear about your son and daughter and mom. Do you suspect pyroluria in family members too?
Hi Trudy,
Thank you for your reply. I scored 38 on your questionnaire. Many symptoms since childhood and throughout my life, my mom’s and children. Especially psychiatric.
I have been on this healing journey for many years and knew about methylation years ago and also did the Dutch test and MTHFR genetic testing but not even my functional medicine doctor told me about Pyruloria. (not until Christina’s course did I realize) really a missing link to a lifetime of suffering. To the point of having shock therapy during menopause.
Interesting history below…
I was diagnosed with Grave’s disease after my first child-had radioactive iodine and C- section as well as with my second child. Diagnosed with Lupus after that in 2004-joint pain, went alternative- did heavy chelation and then had bone necrosis of the jawbone and 15 surgeries to remove osteo-necrosis. Then hydrogen peroxide IV therapy to clear toxicity. This I believe a combination or bad dentistry/mercury/root canals and oxalate demineralization. After that many treatments -neural therapy, naturopathic, functional medicine, vitamin and mineral testing and then stopping oxalates-consult with Sally K Norton. After 3 years I still have joint pain and degeneration happening, I do have my neural therapist who tests everything and has me on a building program. I will be doing the DHA labs oat test/ pyrolle although I have been using the formula you have suggested but stress definitely brings on rib pain, noise/light and smell sensitivities. I did not connect the bone/joint issues with Pyruloria. Would like to know more. My feet are deteriorating and bumps appearing. I am in the process of writing a book on alcoholism, methylation and pyruloria ( my story) and new and old research. Niacin and Hypoglycemia. etc….
I thank you so much for your help and all the information and seminars you provide us for free. Took the Anxiety Summit many years ago!!
Best regards,
Lori Germain