How zinc and vitamin B6 prevent pyroluria and social anxiety
– an interview with Trudy Scott, host of the Anxiety Summit (interviewer is Corey Schuler, who presents on Tuesday)
This interview was done on day 7 of The Anxiety Summit: Nutritional approaches for eliminating anxiety, social anxiety, panic attacks and OCD.
You can read/learn more about the summit in my opening talk/blog “Why the Anxiety Summit? Stats, trends and gems.”
Pyroluria/social anxiety
Low levels of the mineral zinc and vitamin B6 are 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. 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.
This constellation of symptoms is often the result of a genetic condition called pyroluria, also known as high mauve, pyrrole disorder, pyrroluria, pyrolleuria, malvaria, and elevated kryptopyrroles.
Here is the online version of the Pyroluria Questionnaire from The Antianixety Food Solution.
Be sure to read the comments for a wealth of information. You’ll see the dystonia question here.
If you need more information I have a whole chapter on pyroluria in my book:
The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings (New Harbinger 2011).
- The pyroluria chapter includes very detailed sections on the background, the questionnaire, testing and pyroluria supplement protocol.
- It does not mention introversion, miscarriage and dystonia as these are new areas that I’m looking into
Here are other great books that also address pyroluria:
Joan Mathews Larson Depression Free Naturally
Carl Pfeiffer Nutrition and Mental Illness
Eva Edelman Natural Healing for Schizophrenia and Other Common Mental Disorders. As Corey said, this one is more for the practitioner.
The pyroluria-introversion connection
This is the blog post I wrote in response to the Huffington Post article, written by Carolyn Gregoire and called “23 Signs You’re Secretly An Introvert”
“Am I an anxious introvert because of low zinc and vitamin B6? My response to Huffington Post blog”
Be sure to check out the 23 signs and the responses from my wonderful followers.
I’d like to invite you to do both questionnaires and comment on the blog. Tell us that yes you are an introvert and yes you score over 15 on the pyroluria question or whatever the outcome is.
Pyroluria and fear of public speaking
Sontine is a client of mine who made diet changes, lifestyle changes like walking and added the key nutrients like zinc and vitamin B6 (and a few others) and found she too had no more fear of public speaking – and she actually started to really enjoy it! She also started to sleep well and had good energy. She was skeptical that this was possible for her but curiosity got the better of her and she’s so pleased with the results. Read more and watch her video testimonial here.
Do you have a fear of public speaking ? Did it improve when you addressed pyroluria? Please comment and let us know.
And here is the info about the zinc taste test and Kelly’s funny video! Enjoy
My interview on pyroluria airs on The Anxiety Summit on Sunday June 15th from 9am PDT (USA time) until 8:59am the next day. You can get access to this interview and all the interviews here www.theAnxietySummit.com – Enjoy!
UPDATE: the summit concluded on Tues 6/24 – season 2 of The Anxiety Summit will be in November 2014. If you’d like to be on the notification list just sign up here www.theAnxietySummit.com
Missed this interview or can’t listen live? Or want this and the other great interviews for your learning library? Purchase the MP3s or MP3s + transcripts and listen when it suits you.
You can find your purchasing options here: Anxiety Summit Season 1, Anxiety Summit Season 2, and Anxiety Summit Season 3.
You can pre-register for future seasons of The Anxiety Summit here: www.theAnxietySummit.com
Hi Trudy,
I have really enjoyed your summit and am truly learning a lot and am regaining some hope that has been lost for such a long time. I have missed several as it is quite a short window to catch them. I guess the only way is to purchase them? Do you still get the gifts if you do purchase the summit?
Also, could you tell us the name of the school that Margaret Floyd attended and also the school you attended. I have always wanted to become a nutritionist and have had difficulty figuring out which school to attend. Also If you would mention the conferences you all were talking about, i couldnt quite make them out in the audio. Thanks so much.
I am a social worker, nurse, and recently a nurse practitioner and would love to get into alternative/complimentary medicine. If you have any tips let me know. Thanks so much.
Best always,
Christa Quinby
P.S. I am not on facebook which has made things difficult, may have to cave.
Hi Christa
Great that you’re learning lots. Buying them is a great option to listen to again later at your leisure and keep for your learning library. We will also do a replay of the top 5 based on votes – that email survey will be sent next week.
Everyone can get access to the giveaways from ALL the speakers here (whether or not your purchase) http://www.theanxietysummit.com/speaker-gift/
We will be adding additional blog posts with links to some of the articles and research we discussed in some of the calls. We’ll be sending an email when those are ready so stay tuned.
Margaret Floyd went to NTA http://nutritionaltherapy.com/ I went to American Health Sciences University in Denver but they have closed down. Check out the National Association of Nutrition Professionals site for other great schools like Hawthorn, Bridgeport etc http://nanp.org/schools
NTA has an annual conference and so does Weston A Price http://www.westonaprice.org/
I’m glad you could connect here even though you’re not on FB…yip maybe time to cave 🙂 and I love that you want to study all this!
Trudy
Hi Christa,
Might I suggest the Institute of Functional Medicine. I am a Nurse practitioner as well and have started my certification. All of this information is very much part of IFM studies.
Thanks for sharing Meneah. I agree, IFM is a great resource for studying Functional Medicine. Keep in mind that pyroluria is not as well recognized as I’d hope and even some Functional Medicine practitioners are only now just becoming aware of it.
My husband (and I) definitely has this. There’s so much, however, I will say a few things. He and his brithers all look the same! All 4 of them! It’s amazing! I had been helping him like you said, ” the women will help the men they’re with”. He was able to change his PSA from 9 to 2 in 3 months with diet and supplements. Zinc is huge for prostate health! However, I (and his family) noticed his “shyness” change. The family says it’s me (we’ve known each other 1 1/2 yrs and been married 3 months). However he really is doing the work! Also want to say, he is in CA this weekend and will be sitting for board licensing test on Monday the 16th. (Then he can work with me when I go from WA to Ca in the winter.). He has not had esteem and whatever else to do this for 15 yrs!
We both have an affinity for EPO rather than fish oil, but, well you know, in health news fish oil is toted more. I’m switching us to EPO. We have a great meat source.
I love you and what you are doing! Thank you, thank you, thank you!
Sincerely, Barbara
PS- I’m trying a very very small amount of tryptophan with my chihuahua 🙂
Hi Barbara
You are so very welcome! thanks for sharing – I love hearing great results like this. And yes is so important for prostate health.
You didn’t say if you both resonate with being introverts and if the pyroluria protocol has helped in this area? would you mind sharing?
You may want to consider doing a fatty acids test for both of you.
Do keep us posted on your chihuahua – is he an anxious little guy (or gal)? I’d also have him/her go gluten-free if you haven’t already done this
Enjoy the rest of it!
Trudy
I just listened to your talk, and am wondering about the timing of taking zinc and vitamin B6-does it matter when and if they are taken together? Also, what about taking other B vitamins along with the B6? Thanks!
Hi Susan
I have my clients do both with breakfast. Some take them later and as long as sleep isn’t affected it’s usually fine. Taking a good 50mg B complex is important if the copper-free multi does not have 50mg of the B vitamins.
Trudy
Trudy
Hi Trudy,
I am currently listening to your Pryoluria – I just wanted to update you on research. You made mention in your interview that research has been minimal since the 90’s. In Australia there is current government funded research into Pyroluria and schizophrenia. Feel free to email me if you require.
Thanks
Jennifer
Hi Jennifer
Awesome – I just emailed you to get the details and would love to share it on the final call. The joy of doing an international virtual summit is that we all get to learn from each other from all over the world.
Thanks so much for commenting
Trudy
Hi Jennifer, could you email me the details of the Australia. Research on Pyroluria and schizophrenia please?
My son has Pyrole disorder and we are diagnosing more and more children here in the Whitsundays, just would like more info for skeptical parents we encounter sometimes…
Kind regards,
Dr Karen Popovich, osteopath, NeurOptimal Neurofeedback trainer.
Hi Karen
I emailed Jennifer and didn’t ever hear back. If you come across this research I’d love you to share it.
Are you familiar with the part 1 and part 2 mauve papers? You can find links here https://www.everywomanover29.com/blog/pyroluria-mauve-pyrrole-malvaria-kryptopyrroles-social-anxiety/
Also, feel free to search ‘pyroluria’ on my blog as I have many posts and more to come.
I’d love to hear that DOs are working in the area so thank you for what you do! I’d love to hear more about why you think you’re diagnosing more and more children here in the Whitsundays? more awareness? these kids have always had issues and have just slipped through the cracks before now? other issues like more stress/more gut issues/more food sensitivities? all of the above?
And who are you testing through? I think we’ll have to connect offline so we can pick each other’s brains
Trudy
Trudy, I just listened to the interview. Fantastic!!! Can’t wait to get started. When do you take the evening primrose oil? Thank you!!
Hi Jane
Great! glad you enjoyed it. I have my clients take EPO at breakfast
Trudy
What is EPO ? I have heard of EPA that’s why I am using salmon Oil tablets. Thanks for all your work, this could save lives and if anything offer huge improvements.
Regards
Doug
San Diego
Hi Doug
EPO is evening primrose oil. It is an omega-6 essential fatty acid known as gamma-linolenic acid (GLA). We cannot make GLA so it must be obtained from outside sources and there aren’t many dietary sources. GLA is often low in pyrolurics and EPO helps address this and also helps with enhancing zinc absorption.
Trudy
Hi Trudy,
Thanks for the summit and reinforcing the information I know about Pyrroluria. I have been suffering from PTSD for many years without realising it and was forced to stop all work, and life, nearly 4 years ago. I am recovering but it was only a year ago I took myself and my children off to a wholistic GP. My now 6 yo son and I have Pyrroluria and by 9 yo daughter exhibits some symptoms although was neg on the urine test. We also had food allergies, leaky gut, extremely high copper, under methylation and general biochemical chaos!
I am still on anti depressants but my psychiatrist has had 2 other patients take their positive pyrrole results to her as well.
The difference in my son is amazing, and the ability for me to process my traumas has increased so much. My psychologist now looks at other patients for similar symptoms for referral about it to their GP.
I am now having active b12 injections which is helping amazingly with brain fog and energy. I have buckets of b12 in my blood but it seems I have stopped converting it.
My sons behaviour was full of tantrums, disorganisation, meltdowns, sound sensitivity and eating much a lot of the time.
I have been told that it can two years for the Pyrroluria to really get under control and I have to say that after 18mths of my son being on the formula ( we have our vitamins compounded) the pyrrole is definitely improved two fold in the past couple of months.
I would like to hear you inform people that as the copper comes out of people who have excess copper it can cause acute and intense behavioural issues like those they have been experiencing and that it can take time to really come under control properly.
Cheers
Jen
Hi Jen
Thanks for sharing your journey – I know it will help so many people reading this blog. I’m so pleased you and your son are improving.
Thank you too for your comment about informing folks re the copper dumping. Corey did briefly mention it and since I have not had any clients who get on the pyroluria protocol experience the intense behavioural issues your son had, I don’t talk about it. But I will do my homework and be better informed. It’s always wonderful to hear from people living this.
There are also so many aspects to consider and often many things going on at once. You don’t mention everything you were doing…I have seen similar symptoms resolve with serotonin support (tryptophan), gluten removal and adrenal support.
If it’s taking 2 years for the pyroluria to really get under control I wonder if there may be other factors at play. It’s made worse by stress so I’d look for stressors like heavy metals, toxins, parasites, infections etc.
Sounds like you have a wonderful health team – I’m so glad! Regarding your PTSD, if you have not addressed the adrenals yet, I’d encourage you to also look into this.
Trudy
Hey Trudy — Thanks so much for your wonderful summit! I just listened to the pyroluria interview – great job, and what an honor and pleasure to witness your growth and expertise in the nutrition field!!
On another note, ironically, my dog has been having an anxiety attack all day today!! I’m not sure what exactly is going on, but she has been pacing, panting, going into corners, walking in circles, not eating, sticking to me like glue,tremoring, won’t sit still etc. I used some rescue remedy and lavender oil on her face/fur, and have another flower essence for her, but do you have any suggestions besides a doggie valium?
We had a wind storm earlier today, which she hates, but that’s over and she is still in high anxiety. We also recently went to the groomer for her Summer-do, and she has been colder than normal. We’ve given her lots of comforting, but nothing is calming her down. Any ideas?
Thanks Trudy!
Heidi – lovely to see you here and thanks for those lovely words of praise 🙂 hugs xxoo
Your poor doggie…Anxitane is the patented form of l-theanine that vets use and is wonderful for both dogs and cats. But you could just use regular l-theanine. Tryptophan is also very effective for anxious animals. In fact Lidtke first started making it for horses! I hope she feels better soon. Do let us know how it works out for her.
Trudy
PS I assume she is gluten-free?
Hi Trudy,
thank you so much for making the anxiety summit accessible to all; and your discussion on pyroluria so informative. I am printing out your quiz to give to my sisters, both with schizophrenia (and lookalike). Mood disorders run in the family, on mums side (many 3-sister families). I have been tested for pyroluria but was negative, and want to get sisters tested however its expensive and GPs and psychiatrists here aren’t aware of or interested in this condition. Very frustrating in public health system.
I’m fascinated with the MTHFR link as I am heterozygous for the two alleles. Have suffered depression/anxiety and unexplained infertility! A zinc drink test 3years ago was like water for me..no reaction, so level 1.
All very frustrating, having to try to convince GPs and psychiatrists that nutrition and hormones are worth looking into to treat mental disorders, not just obesity (resulting from medications to treat disorders).
Thanks so much!!!
ps. Would love if the information on research/trials for pyroluria and schizophrenia in Australia be passed on please?
Hi Aneta
You are so welcome. You are empowered with this knowledge and now we just need to get it into the hands of more open-minded doctors and public health officials.
I will post the Australia research as soon as I get it – and will talk about it on that final call on Sunday
Trudy
Yes – gluten and grain free. I have been making most of her food for the past 10 years – she is 14.5 yrs old!
Just did a little reading on the product – looks like it takes about 3 weeks to work, and, they do not list all of the ingredients or exicipients on the package, so I’ll have to call the company, but … you said we could just use straight l-theanine … do you happen to know the starting dosage for dogs? Would it be taken on an empty stomach like we would do for humans? Thanks Trudy!
Heidi
What a lucky doggie to have you make her food 🙂 The good thing about Anxitane is that it’s chewable and flavored but you could try regular l-theanine. I’d suggest looking at the dosing on the Anxitane site as they suggest different amounts for small vs bigger pets and cats vs dogs
http://www.virbacvet.com/products/detail/anxitane-l-theanine-chewable-tablets/behavioral-health
And yes taken on an empty stomach
Trudy
Hi Trudy 🙂 I have just finished listening to your webinar replay on the Anxiety Summit, which was great. I have MTHFR (homozygous 677T) and Pyroluria, and am feeling great after just a few weeks of 50mg zinc picolinate, 50mg P-5-P and 400mg Methylfolate (the P-5-P and Methylfolate in a quality multi), but have also just started trying to conceive (my second child). My question is, do you use the same nutrient dose ranges in your pregnant women? Also, would you recommend EPO over fish oil for me, even in pregnancy? Thanks!
Hi Katie
None of this is studied in pregnancy so I don’t have an answer for you unfortunately. My thinking is this: if you are feeling better during pregnancy then it has to be better for the baby.
I would recommend having fatty acid testing done and would expect in this instance that fish may very likely be beneficial as well as EPO. But I really don’t know.
I know Dr Ben Lynch, MTHFR doctor, talks a lot about pregnancy and methylfolate and would likely have more information for you on this
Trudy
Trudy, thank you for the very informative lecture about polyuria. I didn’t know I had it. Most of the listed symptoms were present, but now I don’t really have them any more (only fear of public speaking is still there, but to much lesser degree when I was a child or a teenager)because I am supplementing with zinc 50mg daily for quite many years, and also take vitamin B6 at least 100mg daily, sometimes I buy 250mg, and also sometimes P5P, and of course B complex (not to often though).
When I was in grammar school, public speaking was a night mare for me, and I was very shy. I remember one event probably in second grade – I was made to perform on the stage(I didn’t want to do it, but I didn’t have much choice). It went bad, I was pushed on the stage, and of course didn’t say a word, I was paralyzed with fear. After this event they didn’t bother me any more. I don’t have anxiety when in public, and actually enjoy public gatherings. I am also a cat person big time.
My mother had two sisters, I was the only child in the family, one of my mother’s sisters had three daughters, the other one didn’t have children at all.
About 10 years ago I started supplementing with Omega 3 because it becomed so popular and everyone was saying that it is good for many health issues. I did it for half a year and stopped and never came back to it. I just didn’t feel well when taking Omega 3, and my skin got aggravated (puffy and more prone to blemishes), and I had a feeling that my body is holding on to water. Now sometimes I take EPO or Borage oil, and also noticed that I do better on EPO.
All this supplementation I did not knowing the real reason why I might be deficient in these particular micronutrients, just listened to my body, I felt better on them. Initially I was a little concerned about the dosage because I was taking much more than it was suggested in the literature, but I just followed my guts. I also take big amounts of vitamin A and Pantothenic Acid, and feel great on them. I have intolerance to Iodine (get blemishes).
Recently I came to conclusion that my Sulfation Pathway of liver detoxification phase II doesn’t work well. I have sulfite intolerance, and supplements or foods containing sulfur aggravate my symptoms (Biotin, Vitamin B1, NAC, Cysteine, Methionine, I3C, DIM, SAM-e, and of course cruciferous vegetables that I quit eating almost entirely). I was suspecting salicylates too, and so far know that water with lemon is very bad for me, my eyes become red and I feel burning sensation. More to test…
Also have to test myself for Molybdenum level because not enough or to much of it can mess up the Sulfation. Vitamin B2 I am already supplementing for many years – initially started taking it for photophobia. Few years ago when I did my hair analysis, molybdenum came up rather high, what surprised me because I never supplemented it before, so even though most of the sources say that molybdenum supplementation is necessary to improve Sulfation, and only one source I found claiming that to much of it can be bad too, I prefer to be on the safe side and test myself first.
Thanks Trudy
Eva – thanks for sharing your story!
Just want to add to my previous post: I am actually thinking of increasing the dosages of Zinc and B6 because I still can’t recall my dreams, and this public speaking fear is lingering somewhere too, even though I don’t have a need for public speaking in my life right now, but you never know.
What dosages I should try, Trudy? Now it is 50 & 100(250) for many years.
Thanks
Hi Eva – I can’t provide specific advice unfortunately
Hi Trudy,
Your session on pyroluria was very good, really informative, I didn’t even know it existed and now I am wondering if I suffer from it. I have one question: I am studying to become a nutritional therapist and I have been told that long term supplementation of zinc is not advisable, as it interacts with other minerals, copper in particular. Could you please share your views on that, as you suggest to take zinc and the other supplements forever, if you suffer from pyroluria?
Many thanks,
Raquel
Hi Raquel
So pleased you enjoyed it and happy studies. It is tricky because too much zinc may deplete copper but with pyroluria this is unlikely. These are therapeutic doses so testing and working with a practitioner is a good idea.
Trudy
This is such a simple and non-invasive and inexpensive solution for a common problem. I love that you know this and have helped so many with it, Trudy. And your summit is amazing!
Thanks for all your support Sue!
Hi Trudy , so happy to see you on Hawthorn staff. I am a student. Do u have references indicating pyroluria is a genetic disorder. Dr Natasha Campbell McBride stated at a WAPF conference when questioned that this is a gut imbalance not a genetic disorder. You did state that many people with pyroluria have MTHFR SNPs but why doesn’t this cause problems their whole life why generally when their health deteriorates. Chicken or the egg?
Hi Eileen
I have not heard anyone say it’s not genetic and agree that the gut plays an important role. I’m surprised to hear Dr Campbell McBride says this.
I’ll come back and post a few more links but here are a few for now
This one talks about a mutant delta-6-desaturase
http://www.ncbi.nlm.nih.gov/pubmed/3520252
These are the 2 most recent papers I am aware of (published 2008)
http://www.ncbi.nlm.nih.gov/pubmed/18383989
http://www.ncbi.nlm.nih.gov/pubmed/18517107
For fun I thought I’d include this one that says it is a pseudodisease!
http://www.ncbi.nlm.nih.gov/pubmed/14520795
And I’m waiting to hear back about some Australian research
Re the MTHFR SNPs I’m going to have Coleen Walsh, the ‘methyl queen’ pop on and comment. I suspect it’s the perfect storm I mentioned.
Enjoy your studies at Hawthorn! great nutrition school!
Trudy
Dearest Trudy,
I have been riveted this entire week by the Anxiety Summit! Today, when I heard your interview on the subject of Pryoluria I almost fell over backward! I had and have always had since early childhood about 40 of the 42 symptoms. I also learned today that since 2nd grade I have had a severe case of Musicians Dystonia that I had always thought was just my body’s way of coping with stress. I feel so hopeful for the first time in a long time! I have lived a lifetime of crippling social anxiety and so many of it’s related issues. The last time I had to speak publicly, my limbs got numb and I passed out! You have no idea how thrilled I am to have this information!
Would you mind repeating the brand of Optizinc, B-6 and EPO you suggest? I wrote down NOT Source Naturals, but I didn’t catch which ones you prefer.
I think you have saved my life Trudy! This whole week has been amazing! I have neglected all household responsibilities, much to the chagrin of those I care for, and it has been worth every second! Each interview has been fascinating, entertaining and nutrient-dense! Thank you!
Hi Rachael
I am so so happy for you! this is just wonderful! Too funny that you’ve been neglecting your household responsibilities 🙂
I start my clients on Solaray Optizinc and any quality brand of 100mg B6 and 1300mg EPO (ie gluten free etc). Source Naturals has great products it’s just that their Optizinc does have copper.
Remember this may be one piece of the puzzle. Based on what I’ve gleaned about dystonia there may be other factors like low serotonin or autoimmunity etc so keep looking until you’re 100%.
I’d love to share this on the final call if you’re ok with it? I’m curious if you did the introvert questionnaire too?
And please come back and tell us how you’re doing.
Trudy
PS love this: nutrient-dense
Thanks Trudy, You are absolutely right, this is just one piece of the puzzle. I was diagnosed with PCOS at 12 yrs. old and that’s just the beginning. I just went back to school to pursue a degree in Bio-chemistry at almost 39 years old. I started college as a nutrition major over 20 years ago, and here I am with the same passion! I would love to be your prodigy, you are truly an inspiration!
Yes, you may absolutely share this on the final call. I will go do the introvert questionnaire right now. Introvert is my middle name! I avoid real people like the plague!
You’re so sweet and very funny – introvert is my middle name! Good for you going back to school – I was a late bloomer myself. And thank you, I will share.
Hi Trudy!
Great presentation – as they all are!
I had never heard of pryoluria…..however now everything about me – too shy/too sensitive/not liking more than two people in a crowd! sensitive to sun, foods – just seems to fall into place. I scored 27 on the questionnaire! ‘Hiding these feelings from others’ made me a bit emotional! Oh how true – the masks we put on throughout life. Sooooo…. I am giving myself an even bigger gold star for having been able to do all the amazing things I have done in my life – with this underlying condition that I can finally help.
Thank you…..and can I join the middle name ‘Introvert Club’….
Carole
I’m SO pleased you are finding answers. It’s so amazing when we discover there is a biochemical component that can be addressed. So true about the masks – how many people around us are in this very same situation? a lot!
And yes gold star! and yes welcome to Introvert is my middle name club!
We’ll have to think of a new club for when you’re on the pyroluria protocol and no longer feel like this. How about the Mauve Club? purple or mauve has always been my favorite color.
Trudy
This is in response to Ellen Joyce, “…MTHFR SNPs but why doesn’t this cause problems their whole life why generally when their health deteriorates.”
Ellen, There are many things that come into play – your health, other SNPs, toxic environment, family history, etc. But generally our bodies take on more of a toxic overload, inflammation, oxidative stress, etc as we age and our bodies ability to fight off these enemies declines. So, the more toxic overload that you have, can usually make you more susceptible to having epigenetics take over and the SNPs begin to express themselves.
Amazing information and sharing that can help so many people Trudy. I will be sharing this with some of my presentations skills training students
Is there a test or questionnaire to determine if ones Sulfation Pathway is working right ? Would this show up on the 23 and me genetic testing ?
Judy
I don’t have an answer for you on this but will look into it because I’d like to know
Trudy
Hi Trudy, Do you know if pyroluria genetics can be identified via 23 and me? I would like to get the kryptopyrole urine test but hear that it can give false negatives?
I do seem to have signs of pyroluria based on your questionnaire(but I am also going through other issues: adrenals, gut infection identified, food sensitivities identified) but worry taking taking higher doses of certain supplements since I am in childbearing years and do want to have another baby. So worry about overdosing on supplements or getting out of balance. Would like to do tests to give me a better picture about whether I have pyroluria. Is the a nutrient deficiency/level test that can be done for exampple?
Thanks for any help
Hi I was just wondering if u found an answer for this?
Thanks
Hi Trudy,
I just found The Anxiety Summit today, so I’m hoping to do some catching up this weekend!
I am waiting for my pyroluria test results to come back from Direct Healthcare Access and I am really hoping that the test is positive. I am 51 and have suffered with anxiety and panic disorder since childhood. The last year and a half has really been the worst time of my life and I hoping that a pyroluria protocol will be the answer I have been searching for.
I am really writing this message about Katie, who posted a message to you on June 15 asking about supplements during pregnancy. I just listened to a webinar last night by Dr. Albert Mensah from Mensah Medical. It was called Facts and Myths about Pyrrole Disorder. It was quite informative. Someone did ask him about supplements during pregnancy and he said women should not take the higher dosage. He also said pyrolurics should not supplement with Omega 3 Fish Oils, DHA or EPA because of a problem with processing arachidonic acid. I’ve read so much…maybe you agree with this last statement as well or not.
You certainly are an expert in this field, but I thought I would just pass that information on to you. He just posted the taping of the webinar today. You can find it on youtube
https://www.youtube.com/watch?v=kyjTY0Rjl_Q&feature=youtu.be
I have so much to learn and am thankful for all your work and information!
Sharon
Thanks Sharon – I had signed up for the Mensah puroluria talk but haven’t had a chance to listen. I agree on the fish oil recommendation. I’ll listen in to that pregnancy section but it will have to be later.
Enjoy my encore tomorrow – I’m sure you’ll be back with comments – I do talk about testing too and we discuss false negatives
Trudy
Trudy,
I found the comment about pregnancy and therapeutic levels of supplements for Pyroluria on Dr. Mensah’s webinar at the 1:20:30 minute mark. It’s just audio, so it would be hard to find it unless you listened to the whole session.
Sharon
Trudy you are always a wealth of information and I always recommend you because you helped me so much!!!
Thanks Jessica! and thanks for the recommendations
Hi Trudy, After listening to the replay, and reading more about pyroluria online, I’m wondering what you think about the PHP form of Vitamin B6? From what I’ve read some people say it’s a better form.
Susan
Some people do fine on vitamin B6 and some need P5P. I start my clients with vitamin B6
Trudy
Hi Trudy,
I did enjoy the encore presentations from yesterday. I am so hopeful that I can rid myself of anxiety, panic and depression, but also cautiously optimistic very overwhelmed. So much information to digest! Having had anxiety and panic my entire life, it seems too good to be true that taking supplements can help me. I have made so many changes to my diet and lifestyle already and am still do not have the anxiety, panic, insomnia and depression under control. I have felt so defeated for the past year and just cannot continue to live life this way. I wish I could have all of your speakers, as well as yourself, in one room. You could all have access to any blood, urine, saliva and my health history and then hopefully fix me!
I especially enjoyed your interview on Pyroluria, which was moderated by Corey Schuler. I am now convinced that I have pyroluria and I’m hoping my lab result from Direct Healthcare Access will confirm it. I have so many issues with anxiety, panic, depression, insomnia, and adrenal fatigue and all the doctors I have seen just give me more drugs to take. I have been on anti-depressants for over 22 years and was just about to switch to a different SSRI because I am not getting relief from what I am currently taking. My husband and 2 daughters left yesterday for a two week vacation without me because I am so exhausted from the anxiety and lack of sleep and I didn’t think I could make the trip. I was going to use the time to switch to the new SSRI. Now I am thinking I need to get on the pyroluria protocol first.
I assume I should start with the Zinc and B6 supplements first before I start to think about adding any amino acids. I wold love to have a consultation with you and will look into that on the website.
I have found a Naturopathic center where I live in Richmond, Virginia. It’s called Richmond Natural Medicine and co-owned by Dr. Leah Hollon. I have only found them online, so I don’t know if they have experience with Pyroluria. I will call them tomorrow morning. Do you know anything about them or do you know of anyone in Virginia that treats Pyroluria?
Thank you again for putting together the Anxiety Summit. You have given me so much hope, at a time when I was beginning to feel that there really wasn’t any hope left. I want to tell everyone I know about this, especially everyone I know who has anxiety or who are taking anti-depressants. I know so many people who do!!! But, I think I need to work on myself first and get better before I try to help anyone else!
Sharon
Sharon
We did cover a lot and it can be overwhelming BUT just know that now you have these resources and take one step at a time
I start my clients on the pyroluria protocol and one of the aminos at the same time.
Remember, the pyroluria test can come back as a false negative.
I’d be happy to do a consult with you if the Richmond place doesn’t work out.
So pleased you enjoyed the summit! Here’s to the next vacation where you go with your family!
Trudy
Important resources on achieving mental wellness:
In Chicago. And other outreach. cities:
http://mensahmedical.com/ourservices.html
http://www.amazon.com/Nutrient-Power-Heal-Biochemistry-Brain-ebook/dp/B00J75IQUA/ref=cm_cr_pr_product_top
The Mensah doctors were trained and now work with author Dr Walsh.
Trudy, I learn so much from you. Thank you and I will keep the diet/behavior connection in mind for future reference with people I know who suffer from panic disorder.
Great, thanks Mary Ellen
Trudy this was a great talk. I’ve learned so much about pyroluria from you, starting with your fabulous book, The Anxianxiety Solution. There are so many people who are impacted by this and I was really stunned to learn how many conditions are affected by this.
Even more amazing is the stories you share about how helping people with their food/nutrient status can have such an impact. I love hearing about these stories and really enjoy sharing your work and your book with clients and others.
Thank you for all you do and all of the effort you put into helping people learn that there is another way and that they don’t need to feel bad.
Trudy,
Always enjoy your solutions to health issues.
You take a situation and solve it with such easy and healthy
ways.
Trudy,
Thanks for the great insights in this post. I am sorry that I missed your summit. It sounds like you shared wonderful insights.
Awesome info, as usual, Trudy! Thank you for sharing!
Hi Trudy,
Thank you so much for putting on the anxiety summit! I feel like i might have a few new leads to try and get my health figured out. I have reason to believe I may have pyroluria, I just had my third baby and I am breastfeeding, should I wait til I’ve weaned my son before beginning the Zinc and B6 to avoid “copper dumping” negatively affecting baby??
– See more at: https://www.everywomanover29.com/blog/anxiety-summit-gaba-magnesium-pyroluria-and-digestive-issues/#comments
Hi Hannah
You’re so welcome! None of these have been tested during pregnancy or breastfeeding so it’s best to wait.
That being said, high copper can contribute to severe psychosis and in this case I’d suggest that someone works with a knowledgeable practitioner and do as much testing as possible before supplementing.
This is always a tough call as I feel having a happy calm mom is better for the baby and I am not in favor of mood medications during this time.
Trudy
I remember how ill I became every Sunday morning before church. Mother arranged for me to play the organ for church services when I was only nine. I would spend hours and hours practicing each hymn and the preludes and no matter how well I knew the music, I was so terrified I would spend an hour in the bathroom before services. Even a child as young as 9 can suffer from anxiety.
Peggy – thanks for sharing – makes me go awwww. I hope you are no longer anxious
I can’t find P5P form of B6 in my local health food stores. Can you recommend an online source and brand?
Hi Hedy
Pure Encapsulations has a nice P5P
Trudy
Hi Trudy. just discovered i can not take zinc etc to help my pyrrole, because i have adrenal fatigue, my adrenals can not cope with the pyrrole treatment, i will experience adrenal crash if i treat the pyrrole. i have been taking supplements to help my adrenals and had more energy, no wonder i have been feeling worse since taking the zinc etc, OMG will i ever be well. i now have less stress (unemployed) my job was very stressful, how can i fix my adrenal fatigue? which was caused by depression (wanting to be dead is very stressful)then made worse by a role change at work that was too stressful. HELP! (cured my depression with progesterone cream)xox
Hi Cheryl
I am sorry to hear you’ve been having such a hard time. It’s not clear to me why you can’t take zinc and if you were told you can’t do the pyroluria protocol? But unfortunately I can’t help via this blog. I’d be happy to connect about doing a consult if that would help
Trudy
Hi Trudy
I read about pyroluria years ago and suspected my family has it. Unfortunately I only got the first 20 minutes of your presentation – as I had to go into hospital for 3 days.
After 5 years of searching, I discovered that my local Laboratory DOES IN FACT test for pyroluria under the name “kryptopyrroles” at a reasonable cost. My 15 year old “autistic” son was positive. I’m now reading through all this information to work out how to treat it,
Did you say you are South African??? That’s great! You know, in 2009, I had my 2 boys tested at WITS (National Health Laboratory Services), and they never processed the samples – as they said it was specialized testing and it had to be sent overseas. I phoned the Dr every week for a year before they admitted it. Unfortunately not even my homeopath knows about pyroluria!!
I see mention in the blogs about false negative results. I suspected as much! Especially when I read up about symptoms of deficiencies in zinc & B6: starting with nappy rash, cradle cap, soft nails with white spots; on to the acne we are currently experiencing!!!
Thanks for the information – I’m going to continue reading your site.
I was watching something by Dr. Dietrich Klinghardt. He was saying that a high percentage of autistic children have this condition (70%+) He spoke of electro magnetic “toxicity” – I remember that when I was pregnant with my 15 year old, my brother in law had 5 huge trucks parked right outside my bedroom window. They would warm up the engines for hours making black splurges on my wall. It went on for 2 – 3 years!!
Is P 5 P a substitute for Evening Primrose Oil?
Thank you so much for your information!! I hope more people will learn about your work. I also hope your will be part of the next anxiety summit!!!!
Hi Diana
I’m glad you’re getting answers. I’d love to know which lab tested the kryptopyrroles.
I am South African and grew up in Durban. Very interesting about the WITS testing – do you live there now? Also interesting about the electro magnetic “toxicity” – not surprising.
I’m sorry to hear you missed my interview (I hope you’re doing ok now). They were all recorded and transcribed and are still available for purchase. My book also has a whole chapter on pyroluria. P5P is the active form of B6 and is not a substitute for EPO.
You say “I also hope you will be part of the next anxiety summit!!!!” – also talking on pyroluria? I think I’ll do a deeper dive into testing and the supplements and what to do when you aren’t getting the results you expect.
Trudy
Dear Trudy,
I’m responding to the post (above) re. Dr. Natasha Campbell-McBride (GAPS Diet) stating that pyroluria is a gut issue. Here is her comment on her FAQ page about that:
“31. If one were to have pyroluria, would they need to do supplements in addition to the GAPS diet?
Kryptopyrroles are produced by pathogenic microbes in the gut. To deal with it long-term work on changing your gut flora with the GAPS Programme. In the initial stages supplementing zinc, B6, folic acid and sometimes other B vitamins can be helpful.”
http://www.gaps.me/preview/?page_id=32
I have been doing the GAPS diet for 11 months, very successfully, and I regularly consult her FAQ pages for helpful diet/food/health tips, hence I remembered reading this.
Since I am actively working on healing my gut through GAPS – and eating ferments every day to that end – I would LOVE to know that may ultimately help the pyroluria I am sure that I have.
I am fairly certain that the other place I read a reference to pyroluria being a possible issue of the gut was in Dr. Woody McGinnis’s two 2008 “Mauve Factor” (pyroluria) articles. I have not had time to e-read them, but here are the URLs and I think it was in the 2nd article.
Trudy, thank so much for your continuing posting, researching and publicizing pyroluria issues and facts!
http://www.walshinstitute.org/uploads/1/7/9/9/17997321/discerning-mauve-factor-part-1-galley-feb-2008.pdf
http://www.walshinstitute.org/uploads/1/7/9/9/17997321/discerning-the-mauve-factor-part-ii-galley.pdf
Warmly,
Laura
Hi Laura
Dealing with gut issues will help the pyroluria and taking the pyroluria supplements will help heal the gut.
I don’t agree with this comment by Dr Campbell-Mcbride “Kryptopyrroles are produced by pathogenic microbes in the gut.”
We don’t know for sure but it seems to be related to heme synthesis. Here is a relevant quote from the second paper: “Irvine hypothesized that HPL is a metabolite of PBG or porphyrins from the heme biosynthetic pathway, citing the structural similarity of these compounds to HPL”
I also don’t agree with this: “In the initial stages supplementing zinc, B6, folic acid and sometimes other B vitamins can be helpful” if she is implying you’ll be able to stop supplementing eventually. If you have pyroluria you do need to supplement even when the gut is healed but it may be a lower amount.
Also from the second paper:
“Preliminary evidence does suggest bacterial involvement in the formation of Mauve”
and
“multiple observations suggest that intestinal permeability modulates HPL excretion in urine”
and
“stress-induced anomaly of intestinal permeability which permits these pyrroles to get into the systemic circulation. It is well established that stress increases intestinal permeability.”
Having gut issues can be considered a physical stress that may cause the pyroluric symptoms to show up and/or seem worse – remember, stress is a big trigger – physical and emotional.
Hope this helps
Trudy
Dear Trudy,
I am finding the effects of B6/zinc diminishing over the past two weeks and more so right now that I am sick with an infect (taking antibiotics). Would you say that fluctuations like this in the healing are normal according to your experience? I am taking 60mg zinc and 480mg B6.
Thanks and Best,
Jay
Hi Jay
Stress makes pyroluric symptoms worse and a person loses more zinc and B6 in stressful times – so yes fluctuations like this are normal. An infection and also the antibiotics could be considered stresses. I have my clients increase the zinc and vitamin B6 in times of stress and then lower them again later.
Trudy
Thanks, Trudy, for the info, especially the quotes from the McGinnis II article. Everything I’ve read points to pyroluria being genetic. (I have not been able to find any further information about pyroluria in any of Dr. C-M’s GAPS books or websites, just that one comment.)
I will keep on with the protocol you recommend in your book, keep researching, and keep stress to a minimum – or, better yet, learn to respond to stress differently so I stay calm and don’t lose more B6 and zinc in the process.
Thanks!
Laura
Good stuff Laura – I’ll also keep my eyes and ears open for more mention of this. I may also just contact her directly and ask what she has observed
Dear Trudy,
I really appreciate our dialogue, particularly since I have, at this point, no access to a doctor who has experience with this, testing, and even P5P (only the other form of B6), so I am it.
A friend brought your book back from the US and I am enjoying the comprehensive information on diets and food. I now take 600mg Bb (in combination with B1 and 12 as a B complex, split into 400mg in the morning and 200mg at lunch) and 60mg zinc in the evening.
Thanks and Best,
Jay
Good to hear Jay – it’s important to be empowered and your own health advocate! good for you!
I am a 36 year old female from Ireland with a history of anxiety. I have had systemic lupus since age 21. I have found my anxiety has become worse as I get older & my PMS is quite bad. I scored very highly on your pyrrole questionnaire so am pretty certain that I have pyrroluria. I wondered if I was to start your recommended regime of zinc 30mg (up to 60mg),B6 (P5P) 25mg-100mg & evening primrose oil 1300mg should I take fish oils every second day as I am trying to heal a leaky gut & know fish
oils are a great anti-inflammatory?. I also wondered if you could indicate the brand of evening primrose oil you recommend?. Many thanks for your help.
Hi Niamh
I don’t have any preferred brand of evening primrose oil and find that most pyrolurics do not need supplemental fish oil. A fatty acid test is a good way to determine if this is the case.
Trudy
Hi there,
I have symptoms of pyroluria and some MTHFR mutations, but I’m not being able to find anyone in my state (Oklahoma) that can analyze the report from 23andme/MTHFRsupport/Nutrahacker and have been spending days sorting through an overwhelming amount of information and treatment approaches. I suffer from extreme anxiety (especially right before I wake up in the morning), depression, and brain fog. Does anyone know the specific snp/code for pyroluria? Would it always appear as a mutation?
Thank you,
Mara
Hi Mara
There is no specific mutation for pyroluria on the 23andme report. I have heard that many people with pyroluria do also have MTHFR mutations.
Let me know if I can help with your report and figuring all of this out. I do offer phone consultations.
Trudy
i just read the mauve factor article, my husband and my son have random white patches on their skin (no pigment) i now know this is a symptom of their Pyrrole disorder.
Thanks for sharing Cheryl
2 of my children have one patch each of no pigment very white skin on their bodies. I am suspecting pyroluria in myself. I now wonder if they have it too because of this white patch. I’ve not heard of it before.
Claire
This could be vitiligo which can be related to autoimmunity and possible gluten issues. I’ve not seen a connection to pyroluria
Trudy
Thanks Trudy. Any idea how to know if their white patches are indeed vitiligo? Since I am gluten free they tend to not have gluten for years now (except perhaps 2 or 3 times a year in a small amount from family on special occasions). My youngest who is 2 and has one small white patch I don’t think has ever had gluten. I myself have been identified as non celiac gluten sensitive via cyrex lab test.
http://drlwilson.com/do%20hair%20analysis.htm
link to worldwide pyrrole practitioners list
Thanks Cheryl but this looks like it’s Dr Wilson’s list of practitioners who do hair analysis/nutritional balancing using the ARL/ Analytical Research Lab products
TWO MONTHS AGO I BEGAN TRUDY’S PROTOCOL AFTER THE ZINC TEST TASTED LIKE WATER. THE TEST NOW TASTES VERY SLIGHTLY DIFFERENT AND I CANNOT DISCERN ANY REAL CHANGE IN MY SYMPTOMS. I TAKE 2 SOLARAY ZINCS AND 500 MG OF B6 ALONG WITH 200 MCG OF SELENIUM/DAY ANY ADVICE?
Hi Nancy
A few things to consider
1) zinc – if it’s not tasting much worse then it’s possible your zinc levels are not changing. This could be due to high copper, copper in other supps you’re taking, or low stomach acid, leaky gut, food sensitivities like gluten etc. Mercury can also prevent zinc absorption and evening primrose oil enhances it
2) B6 – you don’t mention if you’re having pleasant dream recall. If yes, you’re good. If not, switching to P5P may be a good idea
Trudy
Hi Trudy, my whole family have pyroluria, i have my mum on the suggested supplements starting doses, her doctor said her cholesterol has gone up so she needs to change her diet, would this have anything to do with her taking evening primrose oil (omega 6) ? Thanks.
Hi Cheryl
I have not seen a connection between supplementing with evening primrose oil and cholesterol going up. Just so you know I’m not terribly concerned about cholesterol being a little high in women. Of course if there are concerns I’d have someone have their doctor do a complete VAP test as total cholesterol is just one part of the picture. You can read more here http://www.lef.org/magazine/2007/5/report_vap/Page-01
Trudy
http://drlwilson.com/do%20hair%20analysis.htm Hi Trudy i went to a practitioner on this list, and they did not do hair analysis, they ordered the urine test, on this page scroll down to the heading practitioners list and click on your country to find a practitioner near you.
Thanks Cheryl – good to know
http://www.youtube.com/watch?v=kyjTY0Rjl_Q i listened to this talk about pyrrole on you-tube and he said that omega 3 is pro inflammatory and omega 6 is non inflammatory for pyrrole sufferers, what are your thoughts?
Hi Cheryl
Those with pyroluria often don’t need omega-3 supplements and may even feel worse
Trudy
Hi Trudy,
Both my daughter and I scored high on the pyroluria quiz and had low RBC zinc levels. We started on 30 mg of zinc picolinate (in split doses), along with evening primrose oil and P5P. When we had our zinc retested 3 months later we both had a drop in our zinc level. Is this common? I would have thought our levels would have increased, or at least stayed the same since we went from taking nothing to taking 30 mg/day. Do you have an idea to what would cause this?
Hi Aj
RBC is not a very accurate measure on zinc levels. If you were working with me I’d look at stress levels/sugar/exercise/sickness which could lower zinc levels and possible sources of copper (in the zinc supplement, a multi or other sources). I’d also use the zinc challenge, symptom resolution and alk phos to figure out if zinc levels may be increasing. The form of zinc may also be a factor – I like Optizinc.
Have your pyroluria symptoms gone down? and your daughter’s symptoms?
Trudy
Hi Trudy, on the new anxiety summit do you have anyone talking about pyroluria?
Hi Cheryl
Since I spoke last season I don’t have anyone talking this time. What would you like to hear about that I didn’t cover last time? perhaps we can make something happen
Trudy
Hi Trudy, You have saved my life & my family’s, we all have pyroluria, it is good to know why we have health problems. i just recall you mentioning someone you asked to talk on your last summit, they where knowledgeable about this disorder, but they where unavailable, & you said you may get them to talk on the next one. no worries, thanks, just did not want to miss it. Thank you again for reaching me with the pyroluria information, or maybe i was meant to find you.
Hi Cheryl
You are so very welcome! And now I think I know who you’re talking about – the queen of pyroluria, Joan Mathews Larson, author of Depression-Free Naturally. I will try again for the next one.
Trudy
Hi Trudy,
I am just wondering if you know anything about whether chia seeds are bad for someone with pyroluria. I scored 52 on the test and have been warned against omega 3s such as fish oil but am hesitant to stop taking chia seeds because of all the health benefits. A
Any information would be greatly appreciated.
Hi Marisa
Pyrolurics tend not to need omega-3 supplementation because they can extract it from food so I encourage my pyroluric clients to eat good sources of omega-3s: wild fish, grass-fed red meat, walnuts, flax and chia seeds
Trudy
Hello,
I have been treating my now 11 yr old son on my own for pyroluria for two years. He is doing very well! Before treatment, he was very depressed, introverted, and angry. I just read about how too much zinc has been shown to cause an increase in colon cancer and raises cholesterol. Should I be concerned about him being on high doses of zinc? He takes 11 mg per day, along with b6, b12 and vitamin c. I thank you in advance for your direction.
Hi Serena
I’m so pleased to hear your son is doing so well. 11mg day doesn’t sound excessive but it’s hard to give feedback with no little information. I have not seen research on how too much zinc has been shown to cause an increase in colon cancer and raises cholesterol – could you share a link to where you read this. I would be concerned about the increase in colon cancer (but would like to read the study) but not concerned about the increase in cholesterol since we need cholesterol for making hormones and brain chemicals.
Trudy
Hi Trudy,
Can explosive temper be a symptom of pyroluria? I’ve seen it listed on some websites but not all. Two male family members have that issue along with inner tension, sensitivity to sound,low stress tolerance etc. While neither would be considered extroverts (both can be quiet or outgoing depending on the social situation), they also don’t have the social anxiety. Is this a necessary component for diagnosis?
I wonder if the stress intolerance can exhibit more in external ways (temper) as opposed to internal (withdrawal), especially as it relates to gender where men often tend to express outward and women inward. Both also tend to be negative and pessimistic. Could this be pyroluria given they score high on other issues even though they don’t have the social withdrawal? Any thoughts would be appreciated.
Thanks,
Paula
Paula
I have not seen explosive temper to be common with pyroluria. When I read the symptoms you describe (temper, negative, pessimistic) it makes me think of low serotonin. I suggest having them do this amino acid questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/. That being said, the nutrients for addressing pyroluria do help with the production of brain chemicals so could help with low serotonin and the inner tension.
Temper can also be related to low blood sugar and we see low blood sugar with adrenal issues. We also see sensitivity to sound and low stress tolerance with adrenal issues.
So there may be a number of factors that need to be addressed.
I am assuming the diet is good and gluten is out of the picture, as well as no caffeine/sugar/processed foods
Trudy
Hi Trudy,
I am 55 and have suffered with panic disorder since age 14. My anxiety has gotten so bad I can hardly leave the house at times.
I am a woman of faith but had to even give up church, as I could not handle the people.
Somehow I stumbled on the word pyloria. I had already given up gluten and sugar. I have not read your book, but did start zinc and b6. Also started primrose oil today. Except for occasional nausea I can tell a difference in my mood and anxiety.
I am ready to start living again. It has been a rough road.
Madonna
Thanks so much for sharing – so pleased to hear you can feel a difference in your mood and anxiety already. I’m sure you’ll be able to go back to church and start living again. Please do keep us posted.
Regarding the nausea, taking zinc in the middle of a meal can help with this. Sometimes switching to another form can help too. I like optizinc for my clients.
Trudy
Trudy,
I failed to mention that I am a loner. I don’t like sitting in the middle of a restaurant. I am a vocational nurse. And I have 5 sisters. We all resemble each other.
I am the worst psychologically. Some of my sisters are social butterflies and also very successful. But I think all of them are on antidepressant meds. I look forward to reading your book.
Thanks for sharing this additional information Madonna. Just be aware that some social butterflies are “extroverting” and not feeling very comfortable inside. Many pyrolurics push through and put on a brave face. You may find this blog an interesting read too https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
Thanks Trudy. I was very sociable at one time and even worked in healthcare. But it was very difficult! The past year I have gone through so many physical symptoms, I kind of gave up. Kind of like a breakdown. I became paranoid, anxious, couldn’t eat because of the nausea. I knew it was my uncontrollable body taking over. I want to help others when I get totally well. It’s sad that so many suffer. This disease is very crippling.
Thanks for the extra info. I will read it now.
Hi again!
I scored 16 on the introvert questionaire. And had almost all yes on the pyroluria questions. I’m not even going to get tested! All I can say is thank you for this valuable info.
I don’t know how anyone could enjoy being an introvert! I have disconnected with the few friends I had. In my opinion it is the most lonely place to be in. Like I already said, I’m ready to start living again!
Thanks for coming back and sharing. I agree, it’s lonely.
BTW, I shared some of your feedback on my most recent blog – so we can give others hope too https://www.everywomanover29.com/blog/pyroluria-mauve-pyrrole-malvaria-kryptopyrroles-social-anxiety/
Thank you!
Thanks for all you do Trudy,
I am 44 and I went through premature menopause when I was 36. I have been diagnosed with pyroluria disorder 2 weeks ago and I also have MTHFR. I was unable to even drive because of too much anxiety and stress. Since I have started taking Trace Mineral, Borage Oil and a compounding capsule including zinc, magnesium, B6, etc, which my Dr prescribed, I feel great. My anxiety level has reduced very very much and I feel so much confident. Thanks again!
Hi Linda
Thanks for sharing – this is is wonderful to hear. Would you mind sharing how much zinc, magnesium, B6, borage oil you have found to help you? And how the amounts in the compounded formula were reached? did you have some nutritional testing done?
Do keep in mind that these amounts in your compounded formula may change over time – I’m sure your doctor shared this with you
Trudy
Hi Trudy,
Thanks for all the great information. I have a question about the supplementation for treating pyroluria. Is it required for the rest of one’s life if one has this condition? Also, when you talk about low iron levels, what is considered low? Do you mean outside of the given acceptable range or is “low normal” considered low?
Thanks
Hi Pauline
The pyroluria protocol is forever, yes. Iron below 85 is often an issue. Ferritin, the storage form of iron, is a better indication: 80 is a good level to aim for
Trudy
Hi Trudy,I’m calling from Melbourne Australia,I was wondering if you have had any of your clients present with Chronic Fatigue Syndrome as well as pyroluria.I have just recently been diagnosed with CFS,I also have ADHD .Someone on a CFS forum that I belong to told me about pyroluria and said it is common in ADHD and CFS sufferers.While the link betwwen ADHD and pyroluria is well documented,I haven’t been able to find any information regarding a connection between Chronic Fatigue Syndrome and pyroluria.I notice that there is an overlap of symptoms in the two conditions.I have all of the symptoms of CFS and many of the symptoms of pyroluria.I’m very interested in hearing your views about CFS and how it relates to pyroluria if at all.
Tom
Hi Tom
Hi to you in Australia! I was not aware of a CFS/pyroluria connection until now but see there is some research showing how CFS/mood disorders can have related causes:
An intriguing and hitherto unexplained co-occurrence: Depression and chronic fatigue syndrome are manifestations of shared inflammatory, oxidative and nitrosative (IO&NS) pathways http://www.ncbi.nlm.nih.gov/pubmed/20609377
Of course we may see low zinc in CFS and research supports this:
Lower serum zinc in Chronic Fatigue Syndrome (CFS): relationships to immune dysfunctions and relevance for the oxidative stress status in CFS http://www.ncbi.nlm.nih.gov/pubmed/16338007
This paper is interesting: Nutritional strategies for treating chronic fatigue syndrome http://www.ncbi.nlm.nih.gov/pubmed/10767667 “A detailed review of the literature suggests a number of marginal nutritional deficiencies may have etiologic relevance. These include deficiencies of various B vitamins, vitamin C, magnesium, sodium, zinc, L-tryptophan, L-carnitine, coenzyme Q10, and essential fatty acids.”
I would suggest simply addressing the pyroluria which may have some ripple down effects elsewhere. Everything is so connected and inter-related
Would you please share where the link between ADHD and pyroluria is well documented? I am not aware of this one
Trudy
Hi Trudy,
Thank you so much for all this information! I was diagnosed with Pyroluria last year. I also have MTHFR and Hashimotos with gluten and dairy sensitivity. I have spent the last couple years working on gut health and getting rid of candida. I did a NutrEval amino acid testing in June 2014 and my Zinc and B6 were extremely low, with moderate supplementation.
My question is..
I have been supplementing zinc heavily (along with B6) for about 6-9 months. For zinc, I am currently up to 100 mg… OptiZinc, picolinate and chelated forms. I just took the zinc challenge I learned about from you and I had no taste at all…supplementing 100 mg! I know my gut has healed substantially and I am absorbing other nutrients. For B6, I am also up to 100 mg. P5P…still no dream recall. What could be the reason these are not budging…do I just need larger doses?
Thank you so much! Dana
Hi Dana
Here are some things I would consider for zinc: Evening Primrose Oil improves zinc absorption; good HcL status is need for zinc absorption; zinc-zappers like sugar/stress/gluten; and possible hidden or other sources of copper.
I don’t have my clients go higher than 60mg zinc and 500mg B6/50-75mg P5P.
My question for you – have your pyroluria symptoms abated – specifically the social anxiety and inner tension? if yes, then you’re fine
Trudy
Trudy,
I am discovering that high oxalate a can become very problematic for some people with Fibromyalgia and even Autism, is there a link between pyrroluria and oxalates? For example, they both seem to need supplementation with Zinc, B6, B12 and have a common link with gut dysbiosis/ leaky gut.
Some people with Dystonia seem to do better on low oxalate as well.
I would value your opinion.
Kind regards,
Karen
Hi Karen
I do see oxalates being an issue with any condition where pain is involved so yes I also see the fibromyalgia connection. I don’t work with any autistic clients but my colleague Julie Matthews (author of Nourishing Hope for Autism) sees this a lot. Of course there is also the oxalate mood connection which I’m now learning about so I wouldn’t be surprised if we also saw it with pyroluria. Since pyroluria is made worse by stress, if you do have an oxalate issue, this could be the “stress” the triggers the pyroluria. How often do you see oxalate issues? and how often do you see oxalate issues with pyroluria?
I personally have both: pyroluria (figured this one out about 8 years ago) and oxalate issues in the last year or so. The oxalate issues for me manifested in terrible feet pain – like I was walking on hot coals/shards of glass. I say that in the past tense because when I don’t eat them I’m pain free.
I had not made the dystonia oxalate connection but it makes total sense.
Now you’ve really got me thinking and wanting to dig and research and do a blog on this topic! thank you!
Trudy
Thanks Trudy,
Looking forward to your research…getting quite excited now, I will certainly get more of my anxiety patients tested for pyrroluria thanks to you.
Could you recommend which forms of Vit B6 and Zinc you recommend…
Thank YOU!
Wonderful Karen! I start with 100mg pyridoxine and go up to 500mg and then switch to 50mg P5P (all based on dream recall and anxiety/social anxiety symptoms. I find optizinc/zinc monomethione to be very well absorbed and start with 30mg. The key is no copper in the zinc or multi or other supps.
Thank you!
Hi Trudy,
I get your newsletter. Thank-you for that.
I watched your good video on pyroluria, and Dr. Klinghardt’s on it, and
others on youtube. I’ve been taking some zinc and B6, and studying
pyroluria, and I’m sure I have pyroluria, and so do some of my family
going back generations. On the list of symptoms you present I have almost
all of them, for decades now. I’m 58 yo.
When I take 30 or 75 mg of zinc and 100 or 300 mg of B6, I have periods
where I’m a different person – my thinking is so much clearer and I’m so
much calmer. I can socialize easier. What a huge difference. I can recall
a few instances in my life and childhood when I had this clarity and
serenity and I theorize somehow during those brief interludes the
pyroluria temporarily resolved through diet or supplements. But of course
I did not know what was the cause then.
But there is one issue and that is when I take that amount of those two
supplements I also get a brain fog much of the time, or perhaps it’s
better described as my brain gets very sleepy. My theory is my brain wants
to go to sleep to heal itself? Dr. Klinghardt says when your body doesn’t
have enough zinc it uses other trivalent heavy metals, cadmium, mercury,
etc., poor substitutes, for making hormones, all of your zinc needs, etc.
But when you give it adequate zinc then it dumps the heavy metals and
replaces them with zinc. You detox. He says in cases of deep mineral
deficiency it can take up to four months to resolve. I can feel the
painful heavy metals leaving through my urinary tract when I take the zinc
and B6. When I stop the pain eventually goes away.
So I bought some liquid zinc and some liquid B6 (to control and cut down
on the dosage) and last night I took just 5 mg of each. I can feel it
healing in my brain, and elsewhere, but still feel a little foggy from
even that amount. So tonight I will try just taking 2.5 mg of each and see
how that works?
But I was wondering if you’ve seen anyone who is so sensitive to such a
small amount of zinc and B6?
Do you think that sensitivity indicates a much deeper pyrlouria problem? –
which may take much longer to resolve?
Can you offer any insights on my situation?
Do you have any ideas you might share with me on this?
This is the zinc I started with, but now have stopped taking because the
dosage is too large – I cut tablets in half too –
http://www.amazon.com/Metagenics-Zinc-A-G-180T/dp/B004GINHFW/ref=sr_1_1?ie=UTF8&qid=1427904351&sr=8-1&keywords=metagenics+zinc
Now I take this liquid zinc –
http://www.amazon.com/Metagenics-Zinc-Drink-4-7-oz/dp/B003C5IP02/ref=sr_1_2?ie=UTF8&qid=1427904351&sr=8-2&keywords=metagenics+zinc
And I take this liquid B6-
http://www.amazon.com/HoneyCombs-Vitamin-Extract-Alcohol-Liquid/dp/B0001ITUS4/ref=sr_1_3?s=hpc&ie=UTF8&qid=1427391495&sr=1-3&keywords=vitamin+b6+liquid
Hi John
It’s great that you are noticing an improvement in socializing and feeling calmer. The brain fog could be related to copper dumping (and possibly other metals too) and you may just need to go slow. You also simply need less and be getting a reverse effect from too much for your unique needs. I’d suggest seeing if the lesser amounts give you the same benefits with no adverse effects.
I don’t necessarily think this sensitivity indicates a much deeper pyrlouria problem
I can’t comment on these products as I can’t see the ingredients/label
Please keep us posted
Trudy
Hi Trudy,
Thought you might find this interesting as it pertains to the oxalate/leaky gut/pyroluria discussion.
https://www.facebook.com/permalink.php?id=815902161806363&story_fbid=869404353122810.
Dr. Jess Armine is co-founder of MABIM (Methylation and Bioindividualized Medicine)and is a colleague of Ben Lynch’s.
Paula
Thanks for sharing Paula
It’s so great I am just going to paste the whole excerpt here and add my thoughts below:
World Lyme Day posted this thanking Dr. Jess Armine for this wonderful post on leaky gut syndrome:
March 7, 2015
“A post I wrote concerning the relationship between Pyroluria and autoimmune disease…just FYI but this is what I see daily.
Allow me to propose a possible connection (between Pyroluria and autoimmune disease). Many things can cause leaky gut syndrome. The causes range from microbial, fungal, parasitic, food allergies, and on and on. The herbacides that they are spraying on GMO foods are destroying the gut microbiome which is why I am seeing so many sick children in my practice. Leaky gut syndrome can lead to immune increased function (upregulation) which eventually leads to dysfunction hence autoimmune diseases. Continued immune dysregulation can lead to dysautonomias.
But there is a twist.
Many of the causes of leaky gut syndrome will also produce high oxalates. These oxalates will bind with zinc, potassium, magnesium, b6, and interfere with methylation pathway and practically all the healing mechanisms. Hence, the possibility that leaky gut syndrome – high oxalate can express as Pyroluria(binding of b6 and zinc).
The above-mentioned pattern I see very often. As serious as it can be it also proposes a possible course of treatment.
One proposal would be to begin by reversing the oxalate problem, properly fixing the leaky gut syndrome and then going after the microbial issue. This would have the effect of reversing Pyroluria, reversing autoimmune expression and treating not only the root cause but downstream effects.
Just some thoughts. Dr. Jess”
I’d like to propose that it’s also possible that the leaky gut/ oxalates/immune issues etc can also be considered a stress to the person. And pyroluria is made worse by stress so these factors, together with the depletion of zinc and vitamin B6, may be the ‘perfect storm’ causing pyroluria symptoms to show up.
If the pyroluric symptoms are actually reversed then I’d agree that it was a type of ‘pseudo-pyroluria.’
I’d love to know if Dr Jess tests and sees before and after HPL/KPLs. I’ll have to check…
Trudy
Hi Trudy
Your blog is very imformative. My daughter was diagnosed with leaky gut, adrenal fatigue, under active thyroid and pyrrole disorder 3 months ago. We’ve been taking supplements for all except for pyrrole at this stage. My daughter has intolerance to glutin , dairy , yeast and egg. Lately her intolerance have become quite severe picking up many stomach bugs with vomiting and diarrhea. My daughter is almost 15 and is at a very difficult and difiant stage of her life which makes managing her very difficult. I have never heard of pyrrole disorder until now . Our functional doctor has prescribed her to commence with supplements for zinc and b6 now. We had the cream made up but absorption is difficult unless it is applied in the abdomen and my daughter will not do that as her school uniform is white. The doctor has advised absorption through the feet is not effective. Now we have the tablet form and am worried about her leaky gut issues and the fact she has been getting these stomach flu very often. Can you provide your thoughts.
Maria
I’m sorry about your daughter. I’d focus on gut healing so absorption can be improved. I’d also look into dysbiosis and parasites (since you mention vomiting and diarrhea).
I’m not familiar with using creams for zinc and vitamin B6 but it sounds interesting if absorption is an issue. It is a zinc and B6 cream and it is specially formulated? I’d love to know more please.
The good news is that within a week of being on the pyroluria protocol many of my clients notice improvements so it’s certainly worth trying the supplements
Trudy
Hi Trudy!
I’ve been supplementing with b-complex 50 mg of each b vitamin and 30 mg of zinc for a week. I stopped supplementing for two weeks prior to the urine sample. The test came back negative and my big question is:
could it be a false negative?
I checked for 18 of the symptoms on your list and I know I have this condition. During that week when on the b complex and zinc my anxiety were all gone, even the ongoing tension in my body! I really want to know if I can cure these symptoms for good! I just feel so dependant on a doctor’s confirmation that I don’t dare to supplement on my own, epsecially if this is something you need to do your whole life!
With kind regards
Freddy
The pyroluria urine test is often a false negative. I encourage you to listen to your intuition and recognize what the supplements are doing for you – what wonderful results!
Talk to your doctor about this and get his/her support.
Trudy
Hi again!
Thanks for the reply! I will talk to my doctor about it!
But if I decided to take these supplements because I know I have to do it all my life what are some side-effects or caution from these that I should watch out for?
I learned that my mother also have these symptoms just like me and want to ask if it’s ok that she takes b6 and zinc supplements despite that she has high blood pressure and high cholesterol? She also takes medicines for these! Will they affect her in some way when combined with b6 and zinc?
In regards
Hi Freddy
I suggest reading the pyroluria chapter in my book “The Antianxiety Food Solution” and all the blogs on this site – just search for pyroluria. In summary too much B6 can cause peripheral neuropathy and to much zinc could cause nausea and/or copper deficiency. I suggest finding someone to work with if you have concerns. Do let me know if I can help.
Zinc and vitamin B6 should not be an issue with high blood pressure and high cholesterol and the related medications but everyone is different so this is a general statement
Hi Trudy
I love your blog and the 3rd anxiety summit, thank you for all you do. I have pyroluria and my practitioner has me taking zinc and B6. I’m fine with the zinc (30mg twice a day), but the B6 causes nausea. I am taking 240mg of pyridoxine hydrochloride (in one dose) which makes me nauseous. It’s not a good feeling for a few hours in the morning. I am also taking 50mg of P5P which causes no problems. What are your thoughts on why this is happening? Is the dose too large or should I forgo the pyridoxine and just use the activated form of B6 which I can take with no problems? I would really appreciate your thoughts,
with kind regards
Hi Sarah
So pleased to hear you’re enjoying the summit (www.theanxietysummit.com for folks who don’t yet know about it)
I don’t like my clients taking something that causes an adverse effect so if you were working with me I’d have you switch to P5P, assuming it’s helping with social anxiety and dreams. The brand of B6 (pyridoxine) may also be the issue – fillers, quality? And whether or not you take it in the middle of a meal. I will say this: nausea with B6 is not typical so I suspect it’s the brand or quality.
Trudy
Dr. Dietrich Klinghardt in Washington also states that pyroluria is an infection which can be passed from mother to child which is why it looks genetic. He says it is commonly associated Lyme disease. Don’t know much about his views or protocol, but many people swear by him.
Ruth
I have heard that Dr. Dietrich Klinghardt says this and this is an area I need to look into further. I have seen no real evidence to this effect and without knowing much about it right now I’d say that the Lyme disease or infection is the stress that is causing the pyroluria symptoms to show up (pyroluria is made worse by stress)
Trudy
Does the pyroluria protocol cause diarrhea?
Annie
I have not had this feeback from anyone. When anyone has any adverse effect I have them stop the supps and add back one at a time.
Hi Trudy
I have just read your book and all ready to try out the zinc and vitamin B6 for pyroluria but have come across a descrepency. In the book you state to make sure there is NO copper in the zinc supplement you choose to take. You go on to recommend one called optizinc. I was just on the verge of purchasing this particular supplement when I saw it contains Copper!!! Can you please shed light on this conflict and advise. I am in the UK and do not have access to the blood testing facilities you mention or some of the other suggestions but I was delighted to find optizinc at Amazon. Also what about using liquid ionic zinc? A reviewer recommended this after all the other forms she had tried made her feel sick and upset her stomach? Hoping you can help me. Love Trudy x
Trudy (nice name!)
Many companies use Optizinc and many add copper too hence the recommendation to find one with NO copper.
These companies use Optizinc and don’t add copper: Solaray, Douglas Labs and Life Extension. Source Naturals uses Optizinc and does add copper.
The liquid ionic zinc may be an option but is not something I use
Oh bless you for that Trudy and for such a quick response that is SO kind of you x and yes what a lovely name!
I wonder if the optizinc/copper thing is something that could be pointed out, to be aware of,as if I hadn’t read customer reviews I wouldn’t have known and would have gone ahead and ordered. I would probably have noticed before I took them as I am usually quite hot on looking at the ingredients list but on this occasion because the name optizinc was the. one you said you regularly use with your clients I thought I had no need to check before buying. It wasn’t obvious to me that it was made by different companies and therefore some may add copper. Can I ask please why you don’t use ionic liquid zinc? People are saying it’s so gentle on the stomach but I don’t want to be using it if it’s not going to be effective. I am praying this ‘treatment’ works for me as I have suffered nealy all the symptoms you describe for pyroluria since around the age of ten after my mum left us and I didn’t see her for 5 years. I have tried nearly every therapy and ‘miracle’ cure going and nothing much has ever changed. I tell people ( the very few close friends and family that know) that I am much improved since making myself join a yoga and tai chi class, choir, and meditate and follow Eckhart Tolle’s advice, but truthfully, I am still covering up and trying to be the confident, relaxed, happy person I wish I was.
One last question if I may. How important is it to take the borage or EPO as I am forever reading we should avoid/ or limit omega 6 so I have been supplementing with fermented cod liver and butter oil? I am vegetarian but since feeling just so unwell since before Christmas I have had to make some uncomfortable and difficult decisions re my diet. I have also just introduced ‘great lakes’ gelatine powder and have on order desiccated raw liver tablets!!!! That’s how desperate I am, but just can’t face actually eating the meat or fish – I have tried. Thank you so much for your help and your great book and for wanting to help as many people as possible.
Love, light and blessings
Trudy x
Trudy
I do say Optizinc with no copper in all my talks, my blogs and book. Unfortunately my publisher would not let me mention brands in my book.
I don’t use ionic zinc simply because Optizinc works so well. I would suggest trying it if this is what is available for you.
As I write in my book pyrolurics do often not need omega-3s but are low in omega6s (the healthy kind). If you’re uncertain get fatty acid testing. EPO also helps zinc absorption. I am also not a big fan of of fermented code liver oil.
To me, a bigger issue is a vegetarian diet which tends to be high copper anyway, low zinc, low iron, low B12, low amino acids. I know it’s not easy to make the change but I really encourage you to think very seriously about it. Do go and listen to Lierre Keith’s interview and read her great book https://www.everywomanover29.com/blog/anxiety-anxiety-depression-vegetarian-diet/
Hi again Trudy – firstly thank you again – SO much – for your response , I am so very grateful. I have,and still am, thinking seriously about the vegetarian diet hence introducing gelatine powder, desiccated liver capsules and cod liver oil!!! However this is because they are relatively easy to disguise in other foods or swallow as a capsule. Eating the meat and fish is a MUCH bigger challenge for me and I did try a couple of years ago, after being vegetarian for around 25 years at the time . The problem for me is not just the taste and texture of the food but also the smell. Just the smell alone of fish or mince or bacon etc actually makes my stomach lurch. I have never enjoyed meat from a very young age as a child and the other issue is gagging. I only have to get a tiny piece of gristle or fat or fish bone in my mouth and I instantly gag ,as I did, as a child. So I really don’t know how I overcome this. We are supposed to enjoy our food and the smells of our meals should be enticing to get our digestive juices flowing and ready to eat. Stomach lurching and stress over what you are about to eat can surely not be good for digestion alone never mind the body in general. I even tried a bone broth ‘chicken soup’ a couple of weeks ago but after about 6 spoons had to give up due to the lurching again. It was the smell again as opposed to the taste.It’s such a difficult one and I don’t know what the answer is to overcome it. My health is of utmost importance to me and I am doing everything I feel I can at this moment. I desperately want to feel well but this meat eating issue is causing me real problems.
Anyway aside from that, in your section on sugar and sugar related products, you don’t mention coconut sugar or nectar (syrup) at all and I wondered what your thoughts are on this product. On the website ‘Coconut Secret’ they state it is only 35 on the GI and is full of amino acids!!! And they go on to list them all! The products were created through the owners/creators parents being diagnosed with diabetes – a very interesting story.
Thanks again Trudy
Love Trudy
Trudy, for many people with protein aversion, once their zinc levels come up it is no longer such an issue. Just go slow and don’t stress out about it. Perhaps add in some whey protein in the meanwhile.
I’m not a fan of any sugar – sugar is sugar I’m afraid
Sorry Trudy just remembered I needed to ask -can the ionic zinc liquid be used for the zinc taste test instead of zinc sulphate liquid which I am having problems sourcing in the UK?
Thank you
Trudy x
No it can not
THANK YOU so much for always responding to my questions and all your hep. I am so grateful.
Trudy x
I eat and love cheese, yoghurt and eggs — all animal protein – how does that mean i have an aversion to protein?! Considering I eat these do I still need to add whey powder in to my diet? I currently add ‘Sunwarrior’ vegan protein powder – it states it is a complete protein containing ALL essential amino acids- easily digestible nutrient dense super food!!?
Thank you Trudy
Trudy x
Perhaps I should have said aversion to red meat. I can’t say Trudy – we all have unique needs and various sensitivities. I can just say that whey is a superior option for protein (also if tolerated)
Thank you Trudy x
Hi. Thank you for your information. I am taking 160mg B6, 200mg P5p and 85mg zinc divided throughout the day. I have less anxiety but still cannot remember my dreams. I also take extra hydroxylated B12 and a multivitamin (san copper) containing MTHF and folinic acid for a MTHFR snp. I am also taking essential amino acids and circumin for brain inflammation due to iNOS upregulation.
Is there an issue with these amounts of B6 and P5P? I do not have any neuronal symptoms from these amounts and would like to increase until I experience dream recall. I did not take the B6 today and noticed symptoms return.
I am also not noticing any improvement on the zinc taste test. I have no adrenal or gut issues.
Thanks in advance.
BB
I can’t answer your specific question and suggest you go thru the trouble-shooting checklist https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Hi again Trudy – so sorry to trouble you again!! In your book you recommend to make sure to get the abscorbic version of vitamin C. Could you please tell me why abscorbic ? As my understanding, from other articles I have read, this form the is not the complete C complex but just the outer ring which surrounds the ‘real’ c complex. I have been taking acerola cherry vit C supplements as I read they are the most potent version you can buy and I wondered if by not having the abscorbic form it is important? Hope you can help clarify for me.
Many thanks.
Trudy x
Thanks for this good info! I can’t find a practitioner in my area to guide me through this… What’s the dosing for B6 and zinc for a 4 year old, a 6 year old boy, and 38 y/o male and female? Is it by weight? Or do you start at a certain low dose and work up? I know. B6 is based in dream recall, but what about for kids who don’t always communicate that accurately? I’m fairly certain this is our issue (we’ve been on the GAPS diet for 1.5 years now), along with DS6’s severe auditory processing/SPD issues… Have been trying to et to the bottom of this, but I’m stuck at how much to give. I don’t want to overdose them! Thanks…
Ruth
Yes, weight is the criteria with 120 lb being the adult weight and 60lbs for half doses. Kids with pyroluria typically have nightmares and disturbed sleep. Using the zinc challenge is ideal (https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/) – just observe the face.
When the pyroluria protocol works with kids that are less able to communicate, moms will often see the effects in behaviors such as being less clingy, playing with other kids more easily and better behavior/calmer in social settings/groups.
Can you recommend a corn free and soy free P5P supplement?
Hi Trudy
Have you had patients experience a gut irritation to taking P5P and Zinc Pincolate?
I have been diagnosed with kryptopyrroles and taking 60mg of P5P and 90mg of Zinc Pincolate for almost a year. I was told to increase my dose of P5P to 90mg for anxiety but it made me throw up. I have terrible IBS and did not experience IBS before taking these supplements.
I have been taking them religiously to improve my anxiety. Initially I noticed a difference in the first few and then went back to lack of improvement and the IBS has become a source of anxiety and sleep deprivation.
I’m at a bit of a loss as to what to do as no food is the culprit that I have isolated (I’m currently on the gaps diet without lacto ferments as I have a histamine reaction).
I would be really interested to know if other patients have been unable to take the supps due to gut irritation/IBS. I have not found any information about this so far.
Looking forward to hearing from you
Kindest
Zarah
Zarah
I have not seen zinc and vitamin B6 causing IBS type symptoms and would consider the possibility of SIBO/small intestinal bacterial overgrowth.
Do you know of any doctors in Rhode Island that treats this?
Jennifer
I’m afraid I don’t but I hope to have a directory of practitioners later this year once I’ve launched the Anxiety Nutrition Institute training classes http://www.anxietynutritioninstitute.com/
In the meantime I encourage you to read my book “The Antianxiety Food Solution” and search this blog which has a wealth of information on the topic. It’s also been the topic of a number of interviews on the Anxiety Summits https://www.everywomanover29.com/storemenu.html
What are the reliable pyroluria tests besides the questionnaire? A blood test for b6 and zinc levels? Thx
Brent
There are no good blood tests for pyroluria. Using alk phos <70 is a good clue that zinc may be low.
For most people asking questions on this site, I think it will benefit for everyone to research Dr Walsh and Dr Mensah who have been involved with a lot of research on this topic, including pyroluria and methylation.
You can listen to this youtube video to get a better understanding.
https://www.youtube.com/watch?v=kyjTY0Rjl_Q
Samuel
Thanks for sharing this video and resource on pyroluria. I’m curious to hear if you’ve been a patient of Dr Walsh or Dr Mensa and what they helped you with?
And just a FYI, my site also has a wealth of information on pyroluria – it’s a topic that I’m passionate about.
Hi Trudy,
I came across this blog while research b-vitamins for my OCD German Shepard (GSD), Hawkeye. Hawk is now 10 months old and at the age of about 3 months he began to exhibit tail-chasing which at first was a “cute puppy” thing. We do K-9 training and have spoken at length with the trainer who warned us that it could develop into something far worse and that he had seen this in GSDs before. Well, it is now to the point that he has very little hair left on his once fluffy tail. He has plenty of toys, bones, balls, and antlers. He has activity toys that require him to work for the treat. He has been through obedience training, which is always ongoing, and knows his commands. He gets both indoor and outdoor playtime and has the run of the kitchen ad front hall where I spend most of my time. He interacts well with our other GSD (an older female). As I type this, I have him on a lead to keep him from spinning too much, because if I leave him to his own, he spins wildly, banging into the cabinets and walls. Typing is a challenge! He just hog-tied himself!
We feed him a combination of raw diet and Blue Wilderness. He gets a zinc powder supplement (from Howling Alaska) and Bach’s Rescue Remedy and multi-vitamin.
I have read a few interesting studies, one study done in Finland and one at Texas A&M about OCD (also referred to as CCD- canine compulsive disorder) in GSDs. Both point to B vitamins, B-complex, Folic, and Zinc. My forever search for a good supplement is what lead me to your blog. Is there a B-complex supplement specifically designed for dogs? Or, are dogs capable of digesting our human supplements? Does Pyroluria ever manifest itself in dogs?
Any enlightenment would be most appreciated.
Kat
Kat
I’m sorry to hear about Hawkeye and his tail chasing. I have zero experience with this but when I hear OCD behaviors in humans I think serotonin and inositol to start (although as with anything there could always be many contributing factors).
I found this paper which states: “This study provides evidence for imbalanced serotonergic and dopaminergic pathways in the pathophysiology of compulsions in dogs” https://www.ncbi.nlm.nih.gov/pubmed/22285716. I know Lidtke makes a tryptophan for pets so I would start there.
I don’t know if animals can be given inositol.
I have had someone comment on the blog about pyroluria in their pet but don’t know more than the fact that she saw benefits with zinc and vitamin B6. Someone else shared that Rescue Remedy helped their dog. I’ve also had clients use Anxitane for both dogs and cats with success – it’s a pet-formulated chewable theanine. And have heard very good results about the Thundershirt http://www.thundershirt.com/
It’s been a topic I’ve been getting questions on lately so I’m planning blog post dedicated to this topic – we’ll hear from other who have tried various approaches. I’d appreciate links to those studies you mentioned please.
And please let us know how Hawkeye does!
Hi Trudy. I have a question after listening to your interview with Corey about pyroluria: if I take the optizinc with zinc and 20 mg of B6 is it likely my other Bs will need balancing. Or is it such a small dose that it shouldn’t make any difference? I have IC bladder and have difficulty taking any supplements but desperately want to try hr zinc and b6 to see if it can help with my other symptoms of social anxiety. Many thanks Gillian.
Gillian
It’s best to take a B Complex when taking individual B vitamins but I always based it off client symptoms
For me, allergies and sensitivities also cause anxiety and depression. Do you suffer from this problem?
Adell
Allergies often go hand in hand with anxiety and depression – often due to the inflammation
So you suffer from allergies Trudy?
Adell
I have gluten sensitivity but no airborne allergies
Thank you so much. I have chemical and food sensitivities, gluten/dairy allergy, grass/pine/mold etc. allergy. It’s hard to tell where my anxiety, depression, comes from. I know my serotonin is low, but also, when I take Benadryl I feel better. I’m going to another allergist at the end of this month in Kentucky.
Adell
Keep in mind that an allergist will be testing IgE reactions and not delayed IgG reactions
Hi Trudy,
I ordered the urine pyrroles test, as I’m pretty sure I have pyroluria. I have the majority of the symptoms & have suffered with social anxiety my whole life. Very fascinating website, I am an RN & nutritionist & will pass this information on to my patients. When have you found with your clients to be the best time of day to take p5p? I took it once before bed & found it to be too stimulating. Thank you in advance for a reply! Jen
Jennfier
Glad you are finding answers for you and your patients. Just remember that with the pyroluria urine test false negatives are common.
I have my clients take zinc and B6 or P5P in the morning and at lunch. Some people choose to take them at bedtime and do fine, and some find them stimulating.
Hi Trudy,
When is the best time of day to take p5p that you have found to work best? I took it once before bed, but it seemed stimulating. Thanks, Jen
Please see above
hi,
i suffered from symptoms of pyrroles and have low a linolenic acid
low vaccenic acid
low arachidic acid
aand low nervonic acid
what does this mean
Hi,
My 15 year old daughter has been diagnosed with this a few years ago. The Dr. Put her on some supplements and we saw a dramatic difference. I think she had a urine test score of 32 . While her sypmtoms that went along with pyroluria went away she always felt sick after taking the supplements. So in time she stopped taking them. Even my mother in law asked if she was still taking her supplements because she started to see the old symptoms come back. She hasn’t taken them in about 2 years and has started highschool. She is a varsity volleyball player as a freshman and we started to see her stress level skyrocket. Almost weepy on the court from pressure she was feeling. I told her she needed to start the supplements again ( this time only the b6, zinc, evening primrose and a multi vitamin from Garden of Life). The zinc is also from Garden of Life and does NOT make her feel sick. Great changes were seen once again however since starting these she has had a terrible acne breakout . Could any of these supplements be the cause of that? It started about a week after the supplements began. I don’t know what to do or where to go from here. Thanks a bunch for your all your info you have made available to us.
Cheri
Cheri
Re the nausea, some forms of zinc can do this as can too much and not taking it in the middle of a meal. Re the acne I’d look at other ingredients in the current products and any dietary changes that happened at the same time.
Glad to hear these supps have helped the stress!
Thank you so much for sharing such wonderful life saving info , I am just getting started , but really am hoping to see improvement soon , which I desperately need . Wishing you the best on your move .
Yvette
I did a hair tissue mineral balancing test and it revealed that I’m deficient in B6. I’m scared to take the B6 cause I read some people got toxicity when testing positive for Pyroluria but have the MTHFR Gene Mutation. Any Knowledge on that?
Here I read the comments about toxicity:
http://www.naturalnews.com/048241_pyrrole_disorder_depression_anxiety.html
Also I found a Vitamin B6 from a food source:
https://www.naturisimo.com/products.cfm?id=7377
Joel
I’m not familiar with hair tissue mineral balancing test revealing a B6 deficiency (since it’s mineral balancing and B6 is a vitamin) but I’m curious to know more?
Too much of any nutrient is always a concern and should be monitored for. I have found that many pyrolurics have MTHFR polymorphism/s and do well on the protocol.
I’m not familiar with this food source of vitamin B6 so it’s hard to comment
This is what my hair tissue test showed about vitamin B6:
MINERAL METABOLISM AND VITAMIN B6
A deficiency of, or increased requirement for vitamin B6 (pyridoxine) leads to alterations in the metabolism, utilization and balance between calcium and magnesium. Calcium retention will increase and the excretion of magnesium will also increase when vitamin B6 is lacking. Therefore, an increased need for vitamin B6 may be indicated by your current HTMA pattern.
Joel
I’m afraid to say this is still new to me but I am very curious. Who is doing this test and who is interpreting and finding this conclusion? A link with further reading would be very helpful – thanks!
Dear Trudy, is there any information on supplementing B6 and zinc in children displaying strong signs of pyroluria please? One of my grand-daughters (11 years old) is usually such a happy, confident girl, but goes into sheer terror at what would only make a ‘normal’ person nervous. I have pyroluria myself, and my son, her father, shows signs of having it to a lesser degree as well. But I don’t know if supplementation for a child is a safe thing to do. Her other grandmother is a senior nurse, who would have this knowledge, but writes the condition off as “Oh, you just need more self-confidence!” and won’t listen. She refuses to investigate and help. It breaks my heart to see my grand-daughter suffering so badly, but I can’t suggest she supplements without knowing it is safe for a child.
May
I’m sorry to hear this about your grand-daughter. I’ve very successfully used the pyroluria supplements with children. They respond really quickly and love their new found confidence. My supps blog has liquid supps which is often easier https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
May I ask which pyroluria symptoms she has?
Hearing “usually such a happy, confident girl, but goes into sheer terror” I would also look at low serotonin. I’ve used the 100mg tryptophan chewbable by Lidtke with great success with kids.
Of course I’d also look at gluten removal, no caffeine, eating for blood sugar control, gut health and everything else I address in my book “The Antianxiety Food Solution” http://amzn.to/2iT30Re
Please do let us know how she goes
Thank you so much for your help Trudy. Mostly the symptom is the high anxiety. She is already very afraid of going to high school in 2018 and has been suffering this since around last Oct/Nov. What would make most people a little anxious leaves her terrified (I’m the same). She also has great difficulty falling asleep and sometimes wakes in fear, she has been suffering growing pains for a couple of years (painful joints?), fair skin, sunburns easily, is upset by criticism, has a lot of tooth cavities, often forgets why she’s gone to her room – can’t remember what she went there for, and things like that (difficulty recalling past events), and gets stressed by changes in her routine. Even cries when she is taken to a familiar, and loved, person’s house to stay for a while without her mum or dad. This happens with a variety of people, not just one. Even with me occasionally and I’d say we are total soul mates. We laugh and dance and have so much fun once she’s arrived.
The greatest difficulty is getting her mother on-side with anything medical that is not dispensed by a GP/doctor. I’ve offered to pay for naturopathic consultations and have managed to find one who has heard of pyroluria and has treated children, but I can’t force them to make an appointment. It’s heart-breaking to watch my granddaughter suffer so needlessly, but I’m not her parent so there’s nothing I can do but make her parents (my son) aware of the help at hand if they would just take it.
May
If I was working with someone with these signs/symptoms I’d suspect pyroluria esp when other family members have it. The wonderful thing is that within 1-2 weeks a difference can be seen. Perhaps you can suggest a month long trial? How about sharing this wonderful pyroluria article written by Dr. Judy Tsafrir MD http://www.judytsafrirmd.com/pyroluria-mental-health-and-the-immune-system/
Thank you so very much Trudy, I will share that with them. Bless you!
How many require evening primrose oil?
I cant write english well. Sorry.
I have clients use 1300mg of EPO
Hello! I learned I have pyroluria two years ago. I felt much better after taking P5P, zinc, and Borage/EPO (alternated these a bit), BUT after about a year, I started feeling unwell with it. The worst symptom was severe apathy/depression. The protocol did help to relax me, but it’s almost like it went to the other extreme and I cared about nothing. Those symptoms went away when I stopped. Have you heard of this happening?
Jessica
I have not heard of this happening but anything is possible. These nutrients make serotonin and too much serotonin can also make you depressed. I’d also look at the actual products for changes in formulation, fillers and even type of capsule (folks with SIBO often don’t do well on vegetarian cellulose capsules). I’d also want to know if pyroluria symptoms came back when the supps were stopped and if lower doses helped pyroluria symptoms without causing depression
Dear Trudy, I am hoping that you might consider writing an article for Wikipedia about pyroluria. The only mention they have of it declares that it doesn’t exist and I find that so upsetting. https://en.wikipedia.org/wiki/Orthomolecular_psychiatry#Pyroluria Thousands (millions?) of people are suffering from this horrific condition and Wiki is there telling everyone that we’re victims of our own imagination. I’ve been taking P5P and zinc supplements for almost 2 years now and it has made such a massive difference in my life. I’m so grateful for the work that you do and that I found your website, knowledge and willingness to share. Thank you, from the bottom of my heart.
May
Thanks for the lovely comment and so pleased to hear that P5P and zinc supplements have made such a massive difference in your life! I’d love to hear more about how they have helped?
This entry on wikipedia is so full of errors but we know they are influenced by big Pharma so it’s best to just ignore them and not get upset by what you read there. I have had colleagues update pages on other health related topics and the changes are removed. The good news is that I know of 2 pyroluria studies that are in progress so we’ll have some more recent research shortly.
Remember to be careful and consult with your doctor with taking excess b6 or zinc.
I took my first 100mg b6 3 days ago, and waked up 3:40 at night with strange feeling.
I contienued to vomit next 4 hours with such power it was hard to gasp air.
Everytime i tried to drink water, eat little bit of banana/apple to get energy, its was time to vomit again. I had no powers to even walk around or stay on my feet.
All I could do was to lay in bed 3 days. I also felt so damn cold even thou I had beanie, 2 blankets and clothes on.
I promised myself that if i would get through this, I would warn others.
So here we are. This is one of the first sites that come up with seach words “pyroluria B6” so I decided to share my experience to highlight that;
even thou our biology is programmed to find one-thing-solves-all -solutions to our problems and to fall into cognitive bias; taking +7142% doses of any vitamin should alway been taken with supervision of doctors.
Bless you
Julie
That is a very severe reaction and not one I’ve seen with clients. I never say never but we always check for other causes like a tummy bug or contaminated product or food poisoning to make sure
Dear Trudy,
thanks so much for all the information and advices you always provide. I couldn’t find in any blog what is PSP, which is mentioned several times.
Thank you again!
Love
Beatriz
Many folks do fine with vitamin B6 (pyridoxine) and yet some need the active form called P5P (Pyridoxal 5-Phosphate). Vitamin B6 is more affordable so I typically start my clients on this and switch to P5P as needed
Thank you dear Trudy! I hope things go better in Australia…
Hi Beatriz, P5P means that the vitamin B6 is readily available to your body. Normal B6 supplements don’t get absorbed by us because our bodies kick them out before we can utilise it. If you google P5P (not PSP) you will find lots of information. Trudi’s website is such a blessing for us all!
Thank you May! I was looking for PSP and didn’t find anything, that’s why I asked…
May
Thanks for jumping in…actually as I said to Beatriz many folks do fine with vitamin B6 (pyridoxine) and yet some need the active form called P5P (Pyridoxal 5-Phosphate). Vitamin B6 is more affordable so I typically start my clients on this and switch to P5P as needed
Ooohhh that sounds fantastic Trudy. I stopped buying P5P because I can’t afford it any more so I will try ‘normal’ B6 and try that, thank you! This site and your work are wonderful things and so helpful <3