How do you trouble-shoot when you score high on the Pyroluria Questionnaire from The Antianxiety Food Solution or even have a positive pyroluria urine test but you don’t seem to be getting the results you expect?
You still have social anxiety, that inner tension that you push through and deal with, and likely still feel uncomfortable when in large groups. You force yourself to put on the confident brave face. You may wish you could be more like your extrovert friends and actual enjoy socializing and speaking in public/on stage – without the fear and anxiety. You may still not be a big breakfast eater and have morning nausea. You may not yet be having pleasant dreams that you always remember.
(If pyroluria is new to you here is the Pyroluria Questionnaire from The Antianxiety Food Solution and here is a nice summary – Pyroluria, social anxiety, introversion: a summary )
This checklist is a starting point to try and figure out what may be the issue. These are the questions I work through with someone who is working with me one-on-one.
I discussed 21 of these in my interview on season 3 of the Anxiety Summit: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results
As you heard during the interview, I added MTHFR and I’ve even added a few more since then. I expect this list to continue to grow.
- What form of zinc are you taking and is it free from copper? My favorite is Optizinc (zinc monomethionine) as it’s typically well-absorbed
- Have you made sure that there is no copper in your multivitamin or other supplements? (this completes with zinc)
- Have you been taking evening primrose oil and if yes, how much? (this enhances zinc absorption)
- Did you test your fatty acid levels? What are the results? Did it show a need for GLA (I like evening primrose oil rather than borage oil) and no need for omega-3s (pyrolurics typically don’t need to supplement with omega-3s like fish oil)
- What is your alkaline phosphatase (a blood test)? Less than 70 may indicate a need for zinc
- Have you done the zinc tally/challenge with zinc sulfate and does it taste like water or does it taste really bad? If you zinc levels are good it should taste really bad
- Did you test copper and ceruloplasmin, and if yes, what were the results?
- Did you do the pyroluria urine test? What are the results?
- What’s your score on the pyroluria questionnaire ? And which symptoms do you have?
- What is your score on the introversion questionnaire?
- What were your dreams like before starting the protocol and now? How high did you go on the vitamin B6? Did you switch to P5P and/or use a combination of both if needed?
- On a scale of 1-10, what was your social anxiety before and now (10 is worst)
- What is your stomach acid like? And have you trialed HCl supplements? Tested total protein (in blood)
- Do you eat grass-fed red meat (a good source of zinc, iron and omega-3s)?
- Do you eat sugar? Refined sugar and processed foods? Or even “healthy” sweeteners such as honey in large quantities? (sugar depletes zinc)
- Do you eat large quantities of nuts or bake with nut flours? (the copper in the nuts may be affecting your zinc levels)
- Do you have a copper IUD, copper pipes, copper pots? (this may also affect your zinc levels, keeping them low)
- Have you done a hair analysis and found high copper or high hidden copper? (this may also affect your zinc levels, keeping them low)
- How much and how often do you exercise? What about bikram/hot yoga? (sweating depletes us of zinc)
- Have you used any of the amino acids? And seen good results? (this could be a clue that zinc and vitamin B6 are low since they are cofactors for making neurotransmitters such as serotonin, GABA, dopamine)
- Do you eat gluten and have a gluten sensitivity? If yes, have you healed your gut? If not, you may have malabsorption issues
- Are you completely grain-free? (this may be impacting your vitamin B6 levels)
- Do you have amalgams/silver fillings? Did you have them removed and did a mercury detox? Were you tested for heavy metals? (zinc absorption can be blocked by heavy metals – we talked about this in season 2)
- Do you have the MTHFR polymorphism? It’s common with pyroluria and this may mean you need higher amounts of the supplements
- Do you have high histamine/hisadelia or low histamine/histapenia? Pyrolurics often have one or the other
- Are you taking benzodiazapines or have recently quit benzodiazapines? Your unresolved anxiety may be due to this fact (we talked about this in season 1)
- Do you have parasites, candida, dysbiosis, SIBO or other digestive issues? These can be considered stresses and pyroluria symptoms are worse under stress. Digestive issues also impact absorption
- Do you have Lyme disease or another infection? These can be considered stresses and pyroluria symptoms are worse under stress. The immune system also uses up zinc.
- Do you have food sensitivities? This may contribute to malabsorption. This can also be considered a stress and pyroluria symptoms are worse under stress
- Do you have problems with histamine-containing foods? This can be considered a stress and pyroluria symptoms are worse under stress. Also, vitamin B6 is a co-factor needed for the DAO enzyme, which is responsible for the degradation of histamine.
- Do you have issues with oxalates? This can be considered a stress and pyroluria symptoms are worse under stress. Oxalates can also bind to minerals and lower the levels. For some folks vitamin B6 helps with oxalate issues so the need may be higher.
- Have you been/are you exposed to mold and other toxins? These can be considered stresses and pyroluria symptoms are worse under stress. The immune system also uses up zinc.
- Do you have low oxytocin levels? Do you have a genetic variation in the oxytocin receptor gene (OXTR). Oxytocin has been implicated in anxiety, depression and related stress phenotypes
- Is your life super-stressful or have you suffered from a recent trauma (or have old unresolved trauma)? Stress and trauma makes pyroluria worse
- Do you have adrenal issues? We need good adrenal function for optimal digestion, being able to handle stress and being able to fight off infections/avoid getting parasites and dysbiosis
- Do you have hormonal issues – PMS, perimenopausal or menopausal symptoms? The pyroluria protocol helps and this could be a clue that something is off
- Are you on the birth control pill or have used one in the past? Oral contraceptives cause low vitamin B6 and zinc, reduce serotonin levels and increase anxiety.
- Are you on any other prescription medications? Many medications deplete B vitamins and zinc.
- Do you have vagus nerve issues? Good vagus nerve function is key for digestion, immunity, inflammation, neurotransmitter production and so much more. Also, forcing yourself to socialize when you have pyroluria is stressful and impacts the vagus nerve
- Do you have inflammation and/or immunity issues? Vitamin B6 plays a role in reducing inflammation and immune modulation
This list is NOT exhaustive and it’s NOT in my book The Antianxiety Food Solution because I gathered this information after the book was published. However, the pyroluria questionnaire, detailed protocol and testing information is in the book. There is an entire chapter on pyroluria.
Keep in mind that most folks do the pyroluria questionnaire, start on the recommended protocol of zinc, vitamin B6 and a copper-free multi and start to see improvements in a week. These can be dramatic improvements for many folks. And many folks see decent improvements in a few weeks and tweak things over the next few weeks before landing on the ideal doses.
This blog is for you if this doesn’t happen.
Did you miss this interview or want this and the other great interviews for your learning library? You can purchase the MP3s or MP3s + transcripts and listen/read when it suits you. You can find your purchasing options here: Anxiety Summit Season 1, Anxiety Summit Season 2, and Anxiety Summit Season 3.
Feel free to share your results in the blog comments and what you figured may be the issue/s for you.
If you tweak something and it helped do let us know too. That way we all help each other.
And feel free to ask questions in the comments too.
Trudy, what a wonderfully comprehensive list! This will be a big help for me, and many others, going forward. Thanks for sharing!
P.S. I’m loving every minute of the Anxiety Summit. Positively fantastic!!!
Wonderful!
Trudy, thanks so much for taking the time to reply!! 🙂 I appreciate any guidance at all that you can give me.
The link to Dr. Klinghardt’s presentation on his pyroluria protocol are: https://www.youtube.com/watch?v=-z3kRDYcvhA (Treatment Protocol around 1:14:00)
The powerpoint from his presentation is here (Treatment Protocol on Slide 18):
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CB4QFjAA&url=http%3A%2F%2Fwww.klinghardtacademy.com%2Fimages%2Fstories%2Fpowerpoints%2Fhpu%25202009.pdf&ei=wvhXVbrOEYedsAWjlIGwBg&usg=AFQjCNEs-LDjQqYlM0iAibiIMTYdUg81IA&sig2=mIPsxtlUuDEhTKwNP4wp4w&bvm=bv.93564037,d.b2w&cad=rja
And his pyroluria protocol is summarized here as well: http://www.buzznutrition.com/BuzzNutrition/Pyroluria_files/buzznutrition%20protocol%20notes-pyroluria_for%20website.pdf
1. I’m taking Pure Encapsulations Zinc Picolinate (30 mg), Dr. Mercola Zinc Complex as Zinc Gluconate, Zinc Amino Acid Chelate, and Zinc Citrate (30 mg), and 2 Seeking Health ZCG 500 as zinc L-carnosine complex (17 mg) daily – these are all copper free and I have been taking this amount daily (90 mg total) for four months
2. There is no copper in any of my supplements except a liquid mineral supplement (BioPure Micro Minerals) which contains all major and trace minerals and elements, so it contains a small amount of copper (I take 1 tbsp per day).
3. I’ve taken 2 Orthomolecular Products Evening Primrose Oil a day (total of 2,600 mg evening primrose seed oil and 236 mg gamma-linolenic acid a day) for the past four months
4. According to a recent NutraEval my omega 6/omega 3 ratio was low at 2.7 (normal 3.4-10.7) and my AA/EPA ratio was low at 5 (normal 12-125). I had low levels of most omega 6s, normal levels of most omega 3s, normal levels of omega 9s, and saturated fatty acids varied (some low, some normal, some high).
5. My alkaline phosphatase has been 56, 66, and 62 when it’s been measured.
6. I’ve done the zinc tally test each week for the past 4 months since starting the pyroluria protocol. It initially tasted like water, then progressed to taste like mineral water, and now tastes like string cheese, sweet, with a mild mineral-y flavor that puts my tongue on edge like the sensation you get after eating spinach. It definitely does not taste really bad or repulsive.
7. My serum copper and zinc have been in normal range when tested through regular labs. I have not tested ceruloplasmin. My serum copper was 0.83 mcg/mL most recently (serum zinc was 1 mcg/mL). Before I began the pyroluria protocol, serum zinc was 0.77 mcg/mL (normal), serum copper was 0.99 mcg/mL (normal), RBC zinc was 7.9 mg/L (low) and RBC copper was 0.72 mg/L (normal). (By the way, my recent NutraEval showed borderline need for Zn, Mb, Mn, B9, B12, and vitamin C, and high need for vitamin A, vitamin E, alpha lipoic acid, B1, B2, B3, and B6).
8. My kryptopyrrole urine result through Direct Health Care Access Inc. was high at 12.14 (normal 0-9 mcg/dL).
9. My score on the pyroluria questionnaire is 38 out of 42 (all the symptoms apply except #6, 10, 11, and 27)
10. I scored 20 out of 23 on the introversion questionnaire (all apply except #2, 11, 12)
11. Before starting the protocol I did not have pleasant dreams and rarely remembered my dreams unless they were nightmares. Since starting the protocol I dream most nights (some pleasant, but most stressful, and some vivid nightmares still). I’m taking 250 mg vitamin B6 as pyridoxine HCl and 43.8 mg activated B6 as pyridoxal 5’ phosphate per day (a combination of Thorne P5P and Pure Encapsulations B6 complex).
12. On a scale of 1-10, my social anxiety before was 10 and now is 7-8.
13. I think my stomach acid is low because I have had perpetually loose stools, undigested food in my stools, and chronic bloating (where I look 6 months pregnant after eating!). I’ve tried the betaine HCl with pepsin challenge and I’ve increased to 6 betaine capsules per meal without any sensation of burning but have been reluctant to increase beyond that. It has firmed up my stool somewhat. Total protein in blood has been normal.
14. I eat grass-fed and finished meat daily, as well as wild-caught fish (not much poultry). I animal protein at every meal.
15. I don’t eat any sugar or processed food or use sweeteners of any kind. The only fruit I eat are lemons. After eating only vegetables, meats, and seafood for the past year, I added back some starchy carbs (plantains, sweet potatoes, beets, squash) and have 1-1.5 cups total of carbs per day. Surprisingly, my last blood work indicated high fasting blood glucose and moderately elevated insulin.
16. I don’t eat any nuts or seeds (not permitted on autoimmune paleo protocol).
17. No copper IUD or pots but I do have copper pipes. I just use a PUR filter on the tap water and use the filter that came with the fridge.
18. I have not had a hair analysis. Most recently my serum copper was 0.83 mcg/mL (while serum zinc was 1 mcg/mL). Before I began the pyroluria protocol, serum zinc was 0.77 mcg/mL (normal), serum copper was 0.99 mcg/mL (normal), RBC zinc was 7.9 mg/L (low) and RBC copper was 0.72 mg/L (normal).
19. Exercise – yoga classes 2x/week, tai chi classes 3x/week, and a couple of walks around the neighborhood at a leisurely/moderate pace per week. However, I sweat and flush profusely even at rest and I feel like I lose a lot of minerals that way (doctors told me sweating is due to mast cell activation disorder and hyperadrenergic POTS – hyperadrenergic part was diagnosed on the basis of high circulating blood levels of norepinephrine and dopamine and overactivation of my sympathetic nervous system). I also feel dehydrated a lot of the time despite drinking several liters of water a day.
20. I have not used any of the amino acids you recommend besides L-glutamine (for leaky gut). I felt like this bloated me so I discontinued it.
21. I do not eat any gluten – I’m so acutely sensitive to it that I can’t eat out at restaurants at all because of cross contamination so I have to prepare all meals at home. But, I do not think I have healed my gut due to latent infections and mast cell activation disorder.
22. I am completely grain-free.
23. No amalgams/silver fillings but I have heavy metals as revealed on conventional blood tests and urine tests ordered by my allopathic doctor (they said this is very rare for it to show up on these). I had high blood mercury (also confirmed on my NutraEval) and high lead and cadmium in my urine. I have not done any detox besides far infrared sauna regularly, eating cilantro, and taking supplements like broccoli seed extract, alpha lipoic acid, and glutathione. My functional medicine doctor just prescribed Metagenics MetalloClear which I have not yet started.
24. I am heterozygous for MTHFR C677T and heterozygous for MTHFR A1298C. I take 1200 mcg each of folate and B12 daily for this but I’m not sure if it’s helping or hurting.
25. I have borderline high whole blood histamine (mine is 68.7 ng/mL while the diagnostic criteria for histadelia according to Carl Pfeiffer is over 70 ng/mL)
26. No benzodiazepines currently, however VERY bad reactions and side effects from these in the past
27. I have been diagnosed with Candida overgrowth and suspect SIBO (high fungal and bacterial metabolites on a Microbial Organic Acids Test and on the Genova NutraEval). I also have bacterial dysbiosis markers and malabsorption indicated on the NutraEval. I have had many episodes of food poisoning that I feel caused SIBO due to the autoimmune process Dr. Siebecker described.
28. I have seen an ILADS Lyme practitioner who feels I have Lyme due to a number of indirect markers (CD57, C4a, many positive bands on IgeneX testing and Western Blot). I also have a chronic infection with Mycoplasma pneumoniae which apparently is the most frequent co-infection in Lyme disease.
29. I have many food sensitivities and unresolved GI symptoms despite eliminating all grains including gluten, legumes, dairy, corn, soy, nuts/seeds, eggs, nightshades, caffeine, alcohol, and chocolate for the past two years. I have so many lingering symptoms that I feel like it’s hard to identify any food reactions with any reintroductions I’ve attempted. My diet is severely limited. I only eat cooked vegetables, grass fed meats, wild caught seafood, and healthy paleo fats like coconut oil, olive oil, tallow, duck fat, and lard (I recently added in a few starch tubers).
30. I do have problems with fermented foods of any kind (causes a TON of unbearable itching, cystic acne) due to yeast sensitivity and histamine intolerance. I have not tried to implement a low histamine diet since my diet is already very restricted and a lot of what I eat is high histamine (spinach, avocado, sardines).
31. I don’t have any issues with oxalates that I know of.
32. I may have mold exposure due to pipes that have burst in the walls of my condo and leaks under my dishwasher. I know I am allergic to mold because of regular IgE skin prick allergy testing. I am sensitive to chemicals/fragrances so I think the threshold of my toxic burden is low.
33. I haven’t had my oxytocin levels tested and I’m unsure about my OXTR status.
34. I don’t have a particularly high level of stress in my life but I think I have an extremely low stress tolerance compared to most people. I do try to incorporate stress management techniques (acupuncture, tai chi, yoga, meditation) but could do better!
35. My ZRT adrenal salivary index showed normal cortisol first thing in the morning but it was low at the three other times of day it was tested. My functional medicine practitioner told me this indicated stage 3 adrenal fatigue. We tried to correct with sublingual DHEA and pregnenolone, but this produced bad side effects. I also tried sublingual licorice root, adrenal cortex, and other adaptogens but these were over-stimulating.
36. I do have PMS and irregular period. On my Meridian Valley Comprehensive Hormone Panel I had low DHEA, low testosterone, low aldosterone, and low progesterone relative to estrogen (was on hormonal contraceptive for years but discontinued it two years ago).
Wow! Was this helpful for you to see all the possible roadblocks?
My quick synopsis: Copper in your mineral (you want zero); copper pipes; low omega-6 – so you need more?; Sweating losing zinc (addressing adrenals may help); heavy metals; history of benzos (could be residual anxiety); candida/SIBO/malabsorption – address & find something to heal the gut; Lyme; mold – address; stress reduction – do more; you have to heal the adrenals – it makes the stresses that much worse; GABA for low progesterone/anxiety and look into tryptophan for some of the anxiety too
Trudy
Dear Trudy,
Before learning about pyroluria on your site I inadvertently experienced improvement of social anxiety symptoms when using L-tyrosine. I have since added B6 and zinc as you recommend. I was previously diagnosed with hypothyroidism and now believe it must be Hashimoto’s.
Have others with pyroluria tried L-tyrosine?
Mari
Thanks for sharing. Tyrosine supports thyroid health and boosts dopamine, one of the catecholamines. When they are low you can feel unmotivated, depressed and even reclusive. This could look like social anxiety – does this sound like how you felt before using tyrosine?
How do you score on the pyroluria questionnaire and have the zinc and vitamin B6 helped further ? I assume that’s why you added them even when tyrosine had helped?
Stop eating wild caught fish and taking any omega 3 supplement. People with pyroluria are low in archidonic acid – an omega 6 fat and high in omega 3’s. Taking extra omegas 3 can destabilize. I would drop it and take only evening primrose or borage oil
I would suggest getting fatty acid levels tested and would continue to eat oily fish in the meantime. You are correct Michele, most pyrolurics don’t need to supplement simply because they can extract the omega-3s from the food they eat, but they do need the food sources (wild fish, grass-fed red meat, walnuts etc)
except for us who don’t eat out or very much processed food at all… we need to take some omega 3. I find Barlean’s fish oil or Flax oil SWIRLS with extra Borage oil helpful. Just taking Borage was not right for me. I needed the Omega 3 for my brain. Just take EXTRA Borage. Primrose does not agree with me.
Hi Ali,
I have just read your comment and it’s totally my case. I am wondering if you managed to get better?
Thanks for the reply, kind regards
Simona
Pyroluria protocol eliminated my desire & need for cigarettes. i imagine i smoked to boost serotonin!?. Recent doubling of zinc (discovered my copper was still high with 30 mg zinc for 6 months) is the only change i made, to my surprise within 2 weeks i did not want or enjoy smoking. i have tried many methods to stop smoking over many years including hypnotherapy, ziban, champix, quit, cold turkey, but i always went back to it, it feels surreal to actually not want to smoke. Amazing…
This is so good to hear that the pyroluria protocol eliminated your desire & need for cigarettes Cheryl!
You mention serotonin but if you smoked for it’s calming effects it may also be due to GABA
I went to a testing site that you recommended, Meridian Valley and noticed that they are giving a webinar this Thursday on Oxytocin. Have to be licensed. Maybe you can get some more info on the pluses and minuses. Look forward to hearing about it from you. I don’t think I have any oxytocin. Love and trust issues.
Like the presentation on the anxiety summit about this.
Thanks
thanks Candy! I signed up!
Hi Trudy,
You are awesome ! I’m so grateful for your help and wisdom in these complicated issues. I have been supplementing with zinc ( 30 mg., Optizinc) for months and STILL the tally test tastes like water. I am also taking p5p and evening primrose oil daily. After upping my zinc to 60mg daily, the spots on my fingernails are going away, but the taste tally is still like water. I’ve looked over your checklist and will continue to troubleshoot. I’m a little concerned about taking too much zinc however. Any idea whether we should monitor this ? Thanks for your help!
Christine – I’d look into fatty acid testing, HCl and copper sources
and go thru the checklist one by one – post here if you will as it will help you and others
If you take too much zinc but don’t have enough copper to balance it, your iron will bind to it and you’ll become anemic. This happened to my brother who took zinc for his prostrate. Years later he suddenly and inexplicably became anemic. He’s a hemochromatosis carrier and they stopped medical phlebotomist on him. They were clueless as to the cause. I was concerned….they had him on iron and were considering blood transfusions if the iron didn’t work. By accident I happened upon this info. As he and I both have autistic traits my guess is he eventually ran thru his copper stores. Copper and zinc should be taken together in a very specific ratio which can be easily found online. However this would not apply if your body had an excess of copper. I suspect a copper deficit might not be obvious for quite some time if one had hemochromatosis as the iron stores can be high enough to kill. I’d suggest that anyone taking zinc alone keep this info in mind, or better yet in a journal/personal health record, in case of fatigue, anemia, shortness of breath or heart problems develop. Regular blood work is great if available.
Hi, Trudy,
I was wondering how people with low cortisol can take much Zink? It is reducing cortisol and if some people will take it in high quantity it can cause problem. 7 mg in multivitamins without copper is low level? And what is Zink is more high in blood test than copper? Thank you for great summit!
Lisa – I’m not familiar with zinc lowering cortisol. I don’t use serum zinc.
Glad you enjoyed the summit
Hi Trudy,
I have listened to your last two Summitts and they have literally saved my life from crippling pyroluria and anxiety. It is so wonderful to know I am not alone. I can never thank you enough for helping me regain hope and health!
You mentioned the brand of GABA you like in your talk today but I couldn’t understand it due to your beautiful accent 🙂 Could you please let me know the name again.
Blessings~
Hi Trudy, I’ve recently been diagnosed with pyroluria after searching for over 10 years for answers (I’m now 34). I’ve also got heterozygous MTHFR mutations A & C). I’ve been reading everything I can get my hands on to understand it and your name continually comes up as the guru on all things pyroluria.
I’m seeing a naturopath in Adelaide, Australia but I’m not seeing very positive results. Every time i try taking b6 it makes my anxiety worse. I’ve also tried taking 5htp which made me lose my mind. I’m taking 25mg of zinc in the morning and at night.
My question is… Would p5p be a better alternative to b6? My GP doesn’t believe in pyroluria (grrrr) however gave me a prescription for oxytocin nasal spray which I’ve commenced taking. I know you’re keen to work out whether there is a connection between pyroluria and oxytocin, so am I. Any advice/suggestions? It would be greatly appreciated.
Anne Marie
Some people do better on P5P and some people just need very small amounts of either. As far as 5-HTP goes, trying tryptophan may be an option.
Have you gone through this checklist and ruled out factors?
And yes please do share your oxytocin nasal spray results (did you do the oxytcocin 24 hour urine test?)
I am currently taking BioMedica which has 25mg elemental zinc, 40.97mg zinc glycinate, 38.94mg zinc citrate, 15mg pyridoxine, 11.76mg p5p monohydrate, 9.12mg pyridoxine hydrochloride, 129.54 magnesium citrate (equivalent 20mg of magnesium). I take one tablet in the morning and one at night, but it makes my anxiety worse.
I don’t take any other multivitamin
I haven’t been taking evening primrose oil as my naturopath said it wasn’t needed.
My short chain fatty acid level is 189umol/g and I have high levels of butyrate, acetate and propionate.
My pyroluria test cameback 24.8 and 18 normalised.
I haven’t done the zinc tally/challenge with zinc sulfate
I haven’t had copper and ceruloplasmin testing
I used to have really vivid dreams as a child and could remember them, but over the past few years I don’t remember my dreams at all – they feel like they are on the tip of my tongue but won’t come
I have always been an extrovert, but when I hit 26 years of age, I bought a house, came off my oral contractceptive pill and got camplobactor food poisoning and haven’t been the same since.
I am fine talking in front of big groups of people but don’t cope when needing to socialise and chit chat with people.
I had a complete digestive stool analysis done and the results showed:
“Reduced or nil numbers of lactobacilli, bifidobacterium, streptococci/enterococci, elevated n-butyrate indicating low (acidic ph), rapid transit time, diarrhea, carbohydrate intolerance or SIBO. Presence of starch cells which may indicate decreased carbohydrate fermentation or pancreatic insufficiency. Elevate cholesterol.
I do normal yoga every week (not bikram)
I haven’t used amino acids
I’ve tried 6 months ofgluten free and it did not help.
I’ve had 2 colonoscopies to rule out coeliacs.
I have heterozygous MTHFR and can only tolerate 200mcg of folinic acid or else the anxiety is terrible.
I have no parasites
I have small amount of candida
I’ve never had an oxytocin test
I’ve tried an oxytocin nasal spray and noticed no difference
I suffer terribly from PMS eight days leading right up to day 2 of my period, every month.
I’ve been listening to the Depression Sessions and heard Dr Jill Carnahan talking about IDO enzyme and how when it is activated, people who take 5htp and tryptophan may be worse, this seems to be the case with me.
Any suggestions?
I’m also on 10mg of Lexapro so my naturopath won’t recommend taking tryptophan. I think I have a low serotonin issue but can’t seem to work out how to increase it without my anxiety sky rocketing… I’d really appreciate any valuable advice or suggestions you could offer. 🙂
I do have clients on tryptophan when on lexapro (with doctor’s ok), as long as it’s 6 hours apart. Zinc, B6, niacin, light therapy, exercise, real food with animal protein all help raise serotonin too
Anne Marie
You’ve really answered your own questions …this is what I’d look at if you were working with me
I like indiv zinc and B6 so you can control how much and how it affects you + EPO helps zinc absorption.
Don’t take something that makes the anxiety worse.
It appears you likely need more of the zinc – do the zinc challenge and look at alk phos.
It appears you likely need more of the vitamin B6
Address gut health, candida, SIBO and hormones/liver support
Stay off gluten
Do amino acid trials of GABA, tryptophan if yous score low GABA, low serotonin
Thanks Trudy for all your suggestions and advice.
I’ve just discovered I’m pregnant and was wondering whether you can take GABA when you’re pregnant? And also if you’re on lexapro?
Are there any supplements you’d recommend to help relieve anxiety when pregnant?
Regards
Anne-Marie
Anne-Marie
None of the amino acids have been studied during pregnancy. There are also reported adverse effects with SSRIs so if your doctor gives the ok to use amino acids I would say they are a better choice than medications
I would also suggest focusing on the non-supplement approach – real food (all organic), no gluten, no caffeine, no sugar, blood sugar control, wild fish, grass-fed red meat, fermented foods, healthy fats + heartmath/meditation or yoga + exercise. A full spectrum lamp could help a lot too
Hi Trudy,
Thank you again for the great anxiety Summit. I have a question about zinc supplementation for pyroluria. I learned from a speaker on the Healthy Gut Summit (I can’t recall which doctor) that zinc carnosine is effective for stitching the cells together in those with leaky gut. I am taking Peptic-Care ZC from Pure Encapsulations.
Each capsule has zinc from zinc-l-carnosine 16mg, carnosine from zinc-l-carnosine 58 mg, zinc-l-carnosine complex 75 mg. I am taking 1 capsule per day (1-2 per day is recommended). Would this type of zinc fulfill what is needed for Pyroluria?
Season 3 was my first experience with the Anxiety Summit, which was very good, so I reviewed the speakers and topics from Seasons 1 and 2. In Season 1, Dr. Josh Friedman recommended DPA for broken-hearted ness. Can you please tell me what DPA is.
Thanks so much,
Vernie
Vernie
I have not used zinc-l-carnosine so I’m afraid I can’t comment. DPA is d-phenylalanine and raises endorphins and helps with emotional feelings, pain and as Dr Friedman said broken-heartedness
Hi Trudy,
My son has pyroluria with social anxiety and depression. He also has low cholesterol (which I’m sure isn’t helping his hormones and oxytocin!). We tried Sonic cholesterol, phosphytidyl choline and Seeking Health amino acid blend to raise his cholesterol and each supplement we try makes his depression much worse. Do you have any idea why that would be happening?
I was also wondering about his fatty acids and brain health/depression. I had him on fermented butter/cod liver before he was diagnosed with pyroluria. Now
he is off that and on borage oil, but he is low in many different fats and am not sure what to give him.
He is low in
lauric
a-linolenic
linoleic
vaccenic
arachidonic
arachidic
DPA
DTA
his total polyunsaturated is low
Any advice?
Thanks,
Lori Young
Lori
When testing shows a need and then supps make it worse I always think “pixie dust” person and start lower amounts. I would look at possibly adding lipase enzymes and looking at liver and gallbladder health, and nutrients to support bile production.
Also, my 2 cents…I do not like fermented butter/cod liver oil
What brand of opti zinc are you using? Source naturals has copper, do you use NOW brand?
Solaray Optizinc or Douglas Labs Optizinc
Hi Trudy
I am curious as to how you recommend going about heavy metal detox on an already anxiety- exhausted body? I would love to know..I feel this is a huge part of what needs to clean out. Also, I have heard that the provoked urine tests give a better read on the metals but it seems you advocate for hair analysis..what is your experience with that?
Thank you..
BD
I do not work with folks on heavy metal detox other than gentle twice-a year nutritionally supported general detoxes.
For a serious detox I would suggest waiting until someone is less anxiety-exhausted and to find someone who specializes in this. Even then I am wary of chelating agents like DMSA, DMPS and EDTA.
I am also cautious about provoked urine tests as some folks react badly. Hair analysis can be tricky to interpret – are metals low because you don’t have them or low because you’re not excreting? Kris Homme talks about this and porphyrin testing here https://www.everywomanover29.com/blog/hidden-mercury-burden-anxiety-part1/
I started taking Premier Research B6 1/4 tsp or 60 mg daily after taking the pyroluria questionnaire and scoring high. **NOte that the premiere research B6 is highly bio available. I’ve been taking it for about 3 weeks along with zinc (I was already taking zinc) and I have developed a pins and needles feeling all over my body along with an occasional shooting pain in my arms. At first it was very mild and I didn’t associate the two, but now after researching B6 toxicity online I think it may be B6 toxicity. I will keep a close watch. I’ve stopped the B6. Since you seem very experienced with B6, have you heard of this reaction before? Is there a detox protocol or another supp that will flush the B6? I’ve heard of the niacin flush but not B6. I do have the MTHFR C677T mutation which may be the reason I’m not tolerating the extra B6. I picked up the following up off of another website thread (not in response to my own post) “liver is overwhelmed and cannot add a *phosphate* molecule to the pyridoxine, thereby producing the active pyridoxine 5 phosphate. instead, you have pure pyridoxine floating around and it’s toxic. ” I’m not certain of the above statements’ accuracy but I am curious if this might be a key to flushing the pyridoxine if I can find what to take that will bind to the pyridoxine or just support my liver. I’m taking Liver Life now along with Epsom salt baths and it seems to help.
Any help is appreciated! Thank you.
Jill
Peripheral neuropathy from vitamin B6 reverses when you stop. Please do comment and let us know how you’re doing now.
I’m afraid I have not heard of the liver-phosphate toxicity connection
I have advanced liver disease from hemochromatosis and I take milk thistle seed. I’ve only sever seen it on herbal web sites, in it’s natural form. I buy it in bulk, run the seeds thru a coffee grinder and take a big spoonful or more per day, a bit at a time, flush it down with water. You can also make your own capsules. I is also helpful to make a tea out of dandelion roots. I add it to some weak decaf coffee. Coffee is also good for the liver. Both are diuretics. I use small amounts of both daily and they work well.
Hi Trudy,
I am so inspired I just watched you with Sean and feel as though this may change my life, there seems a lot to take and i wondered by signing up on your website to the discovery if you help with dosage advice?
Kate
So pleased you’re inspired! Yes absolutely! You can read everything that is covered here https://www.everywomanover29.com/services.html
Hi Trudy,
I have a question about people who get nauseous when taking zinc, even when taking it with food. With pyroluria, you have them taking larger doses (30+ mg) than what would be in a vitamin/mineral supplement. Is there a type of zinc that is better tolerated? Other than having them divide the doses throughout the day, any other suggestions? Have you run across this?
Great Anxiety Summit…lots of good, practical information!
Jean
Take it in the middle of the meal and keep switching the form until you find one that doesn’t do this.
I’ve had 2 clients with this effect
Glad you enjoyed the summit!
Hi Trudy –
I saw your interview with Sean and a light bulb went on for me in a big way. I have a number of issues from thyroid to hormones to adrenal and am struggling each day. Lack of zinc seems to keep coming up in the research I am doing, along with copper toxicity. The questionnaire above was very enlightening. My alkaline phosphatase in very low; at 29 with the range listed is 39-117. My doctor says not to worry about it, as they don’t consider it to mean anything. I have always been an introvert, but am working in a stressful job that requires an outgoing, take charge personality. Along with raising two teens and running a household, I am at the brink… My question to you is, should I just start taking the supplements for pyroluria and see how I feel? Or is it better to take the urine test and have proof and a sense of a root cause? Obviously the former would be the best option, but I am struggling each day and would do anything to feel better. I am not sure I can wait the few weeks it would take to order the test and get results. I already have the Opti-Zinc for the kids acne and I already have Primrose oil for PMS, so I would just need to get some P-5-P which would be easy enough. Your thoughts would be so appreciated. Thanks so much –
Laura
I use the questionnaire and response to supps with my clients. The urine test is often a false negative so keep this in mind if you do test
Glad to hear about the light bulb!
Thanks so much! I have purchased your book and am feeling hopeful! Appreciate the work you do and information you share.
Hi Trudy, I have purchased the Tryptophan (lidtke) and GABA from Source naturals.. the GABA says it is 750mg per tab, should i be splitting these pills or can i take 3 per day with my tryptophan away from my meals?
Kate
I find that 750mg GABA is way too much for most people. I have my clients start on 125mg GABA (from Source Naturals GABA Calm) or around 200-250mg GABA. You can see some examples here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Hello I am a 29 year old male who has recently been diagnosed with pyroluria. The protocal that was given to me by Dr Mensah was 200mg of b6, 100mg of p5p and 50mg of zinc per day. For the first couple of weeks I started taking 100mg of b6 daily as I wanted to slowly increase the b6. I immediately noticed a huge improvement with my social anxiety and depression, the feeling was better than being on an antidepressant without side effects. However after the initial couple of weeks I noticed that the benefits began to wear off and now 3 months later I feel almost nothing and my anxiety is back. When I try taking the p5p I find that It gives me heart palpitations and insomnia. I contacted mensah medical but they basically told me it should work and they don’t know why I’m reacting this way to the protocal. I been reading online and it seems that you are one of the most knowledgeable persons about Pyroluria. Can you offer any advice as to what I’m doing wrong? I would greatly appreciate it, you are my last hope before I give up and go back on medication for my social anxiety.
Thanks
Anyone ?
Greg
I’ve been in South Africa with a medical emergency and got behind in commenting – sorry for the delay.
I really don’t have enough information to go on to be able to comment. The fact that you saw such profound benefits is encouraging and I would not give up hope. I suggest you go thru each of the above questions and see where the possibly issue could be. Feel free to post here and I’ll take a look.
Also some people do better on tryptophan and even then, “pixie dust” folks need very small amounts.
I am also available for one-on-one consulting https://www.everywomanover29.com/services.html
Thanks for the reply, I already tried a lot of the suggestions from the previous posts. I am gluten free and have tried taking a multivitamin as well. I’m thinking that perhaps taking vit b6 in this amount for a couple of months has depleted magnesium and unbalanced the other b vitamins in my body. I think I will try adding a magnesium supplement but I just don’t know how much to take or when.
Greg
Have you gone thru the 36 questions of this post and addressed everything/ruled them out? That’s what I meant. If you suspect low magnesium, RBC magnesium is a good test to do and taking magnesium to bowel tolerance is a good start, starting with around 400mg in the evening.
Hi Greg,
just wondering how you are going with the social anxiety?
I am also 29 and have been on the pyroluria supps for 10 months now, with little improvement. are you still taking them or have u resorted to medication?
kind regards,
Nick
Trudy,
I was curious about the ceruloplasmin testing. Is there an inverse relationship with the results of that test. i.e bottom of the range or below meaning high copper and a high result indicating low copper status in the body? I cannot seem to find a good answer for this.
Thanks,
John
I don’t really like to link to wikipedia because I think they are often biased but this page has good information on low and high levels https://en.wikipedia.org/wiki/Ceruloplasmin
Deficiency – Lower-than-normal ceruloplasmin levels may indicate the following:
Wilson disease (a rare (UK incidence 1/100,000) copper storage disease)[10]
Menkes disease (Menkes kinky hair syndrome) (rare – UK incidence 1/100,000)
Overdose of Vitamin C
Copper deficiency
Aceruloplasminemia[11]
Excess – Greater-than-normal ceruloplasmin levels may indicate or be noticed in:
copper toxicity / zinc deficiency
pregnancy
oral contraceptive pill use[12]
lymphoma
acute and chronic inflammation (it is an acute-phase reactant)
rheumatoid arthritis
Angina[13]
Alzheimer’s disease[14]
Schizophrenia[15]
Obsessive-compulsive disorder[16]
This is may also be helpful https://labtestsonline.org/understanding/analytes/ceruloplasmin/tab/test/
Trudy,
Thanks for the reply and the links.
I was just curious as I tested positive for pyroluria via urine sample and the very bottom of the range for ceruloplasmin.
Hi Trudy!
I started with the treatment a month ago. Everything was good back then, my social anxiety was gone and my dream recall was perfect. Now after that I feel the effects are diminishing, my dream recall is poor and my anxiety is back full blown. I tried to increase the dosage of B6 but I feel no difference. It feels like I’m not getting the benefits like I used to. I’ve also tested positive for pyroluria but my doctor at Mensah doesn’t seem to know what could be causing this zero effect.
Best regards
I went through the same thing as you. I had really good results at the beginning then after a couple of months the effects diminished to where i felt almost nothing. I Contacted mensah medical and they told me they dont know why and told me it should work. Ive tried everything from adding b complex to magnesium, multi vitamin etc… Nothing worked. The last thing im going to try is to stop taking the supplements for a few days and see if perhaps i had too much b6 and zinc in my body. I was skeptical when i first read about pyroluria and am becomming increasingly skeptical about it now. I wish you the best if luck and hope you find something that helps you out.
Greg
Please come back and share. I’m curious if you had the testing done too?
Also, as I said to Freddy, have you gone thru the list above and checked off all the factors that may be playing a role? I encourage you to go thru each one.
It may simply be added stress in your life and you may need to increase the nutrients OR it may be more involved.
Freddy
Have you gone thru the list above and checked off factors that may be playing a role? I encourage you to go thru each one. It may simply be added stress in your life and you may need to increase all the nutrients OR it may be more involved
I wonder if the lack of results has to do with copper dumping..perhaps all the zinc usage creates an eventual imbalance with copper
BD – both are possible, yes
V unpleasant side effects have started to kick in 10 days into the pyroluria protocol. 10 days ago I started 30mg zinc, 100mg b6 (50mg b6 pyridoxine hydrochloride + 50mg p5p) and 1300mg EPO. Gradually started feeling v wired and fired esp at night and insomnia exacerbated. Felt ‘tingly’ all over last night and slept 2 hours max! Confused – DFH Zinc Challenge still tastes like water?!? Perhaps my COMT and MAO-A genetic SNP’s don’t ‘like’ these supps?? Who knows…
Over the last 18 months I’ve taken a myriad of supplements (most recommended by a practitioner) all of which have not improved how I feel and more often than not made things worse. A few weeks ago I had a spell where I was taking nothing except Krill Oil, Vit C, D3, Prescript Assist probiotic and never felt better and sleep hugely improved. I’m beginning to think less is more, JERF (just eat real food), address lifestyle factors and avoid the supplements which cause havoc with our complex and unique bio chemistries. It’s a minefield – a lot of this is hit and miss and keeping the supplement companies afloat! 🙂 I have a significant collection of half used supplement bottles which I call my supplement graveyard! 😉
Another conclusion – one cannot do this alone – without question one needs the expertise and experience of an excellent well versed practitioner to steer the ‘ship’… I’m out. Wondering if you received my email Trudy of the 12 Sept 15?
Many thanks. Drew
Sorry to hear this Drew – I’d really suggest going through the list one by one – and yes working with someone to help navigate all this does often help! Sometimes jut introducing one thing at time helps to figure out the culprit too. And starting really low and going really slow
Yes, definitely the way to go Trudy. Yesterday I stopped all the pyroluria protocol supplements and last night slept right through from 10pm – 5.30am for the first time since starting the pyroluria protocol and for the first time in a while! Removed all supplements including Calton Nutrition Nutrience and sleep is much better!? I am so hesitant now to take any more supplements in the future after having several long term issues as a result of supplements over the last 18 months.
It could have been the type of Zinc or B6 too that’s a problem for me – who knows. I was using DFH Zinc Supreme (http://bit.ly/1Lo2NHn) and Pure Encapsulations P5P50. Anyway, think I’ll leave it to the experts to guide me from now on although it appears that I am a complex case which will take a while to unravel… :-). However, not all is lost as I have done a lot of groundwork and testing and have a lot of knowledge and experience in my arsenal now. 🙂
Good to hear Drew and sorry to hear you’re a complex case but glad you’re doing your own detective work.
Unfortunately stopping all the new supps means you can’t be sure if it was just one thing causing the problem!
One thing comes to mind when it appears someone is deficient and then doesn’t respond or has a bad reaction – a common something in all the supps? cellulose? gelatin capsule? vegetarian capsule? magnesium stearate? rice flour?
Another is the pixie dust concept – needing very small amounts
Thanks for this Trudy – yes some things to consider. I love the idea of being a pixie duster… 😉
Drew
I’m curious if you were also taking the phenibut while all this was going on? This is per your comment on this blog on Oct 13th https://www.everywomanover29.com/blog/which-amino-acids-for-anxiety-which-ones-how-long/ If yes, then I’d come back and look at some of the supplements you think may have been problematic
No Trudy, I wasn’t taking the pyroloria supps (Zinc, B6, EPO) at the same time as the Phenibut. I try to avoid too much at once so that one can be more discerning with what is causing what reactions. I was taking the Phenibut (GABAwave) towards the end of August and the pyroluria supps more recently.
Thanks for letting me know and smart move but I can’t help but wonder if you may have some residual side-effects. Phenibut has been compared to benzodiazepines and the benzo effects can last for months (and even years). I honestly don’t know how long it takes to get phenibut out of the system but just putting it out there
Hi Trudy,
Is there a reason you recommend primrose over borage oil, it seems borage has more GLA then EP oil.
Also, have you had any reports or feedback with clients getting a weird taste in there mouth from any of the pyroluria supplements, I cannot figure out which one is causing it.
John
Over the years we have just found EPO to be more effective. A weird taste could be due to zinc causing copper dumping. The best way to know is to do one supplement at a time
Hi Trudy,
My partner, who was diagnosed with a chronic illness 4 years ago and has been almost entirely bed bound for the last 15 months, recently tested positive for pyroluria. Her nutritionist is guiding us through the treatment protocol. My partner has got up to 400mg of p-5-p with no noticeable impact on her anxiety, inner tension or reduction in her horrible anxiety-based dreams. Ironically, the only real change we have noticed is a marked and detrimental deterioration in her already very disturbed sleep. Have you experienced sleep disturbances as a contraindication of high b6 levels before, especially with taking p-5-p? Many thanks in advance for your time and help.
Phoebe
I’m sorry to hear about your partner. I can’t give you specific advice via the blog but will say that 400mg of P5P is a high amount and anytime a supplement causes adverse effects I have my client stop.
Hi Trudy,
Thank you for your reply. It took us a while to make the link between the increased sleep disturbance and the P5P as we were expecting the P5P to help rather than hinder, but since making that link we have reduced her P5P dose right back down to 25mg. I am going to try and implement the baseline doses I have seen you advise on this forum. I have a couple of other questions if I may be so bold –
1. My partner has has never had an issue with dream recall. On the contrary, for many years now she has experienced the most vivid, detailed, horrible, lengthy, often highly anxiety-based dreams I have ever known and she is able to recount them in minute detail. These dreams often result in her crying, screaming, hyperventilating or thrashing around in her sleep. I have read a lot on the link between B6 supplementation and dream recall – using dream recall as a sign that the B6 dose is appropriate. In my partner’s case of being able to recall these horrible dreams, would that indicate that she doesn’t need B6? Or would we be looking for these dreams to become pleasant as an indicator that the B6 dose is appropriate?
2. Is there any way, whatsoever, that I can access your help directly on my partner’s behalf?!
Sincere thanks Trudy and merry Christmas to you.
Phoebe
Interesting about the B6 sleep issues Phoebe/Trudy. I wondered what was going on with my sleep recently when I had implemented higher doses of B6 and could barely sleep at all throughout the night – I was on 130mg B6 and unable to sleep! Yesterday I reduced B6 down to 80mg and had a better night, difficult to know where to find the correct balance…?
Just to clarify, the 80mg of B6 I referred to in my post above is 50mg of B6 as Pyridoxine HCL and 30mg as p5p.
Thanks for providing such useful information Trudy, but regarding #6, unfortunately the Zinc Tally test is simply not reliable. I used to utilize it in my practice (I am a holistic MD) but after researching it I now no longer do it.
Please see http://www.ncbi.nlm.nih.gov/pubmed/22784341 and
http://suppversity.blogspot.com/2014/01/quackery-or-solid-science-zinc-tally.html
Hi Dr. Baker
Thanks for commenting. I am familiar with this 2012 paper and note their conclusion which is what much of the literature and text books state: “To date, there are no tests that are both sensitive and specific that accurately assess marginal zinc status in humans…. and further research is needed.”
I wish we had a better way to test for low zinc! I however do find it useful when used in conjunction with anxiety symptoms (and less symptoms after supplementing with zinc), low alk phos (<70), other signs of low zinc and looking at dietary zinc/copper intake.
You mention you used to utilize it in your practice. Did you not find it helpful? Or decided to stop using it because of the lack of research?
May I ask what you use now for assessing zinc status since plasma and RBC zinc do not seem to be useful? copper and ceruloplasmin? plasma zinc:copper ratio? hair zinc/copper?
Thank you for these articles on Pyroluria. I was just tested positive at age 42 and for MTHFR and other Methylation gene mutations causing sluggish Detox pathways. Looking back at my life, all i can say is “No Wonder”. Signs and symptoms make sense. Grateful that i finally have another answer where most Docs and family think we are hypochondriac, lazy or moody with chronic fatigue. I always felt like something was off and I was not able to be my true self (like my inner self wanted to come out & be more outgoing & creative etc.. Thank you again.
Regarding your Checklist #22 “Are you completely grain-free? This may be impacting your vitamin B6 levels)— This explains WHY i feel better eating BANANAS when i go grain-free. Bananas are High in B6. If i don’t eat Bananas while avoiding all grains, i do get cravings for sweets and craving my gluten free grains again. ahaaa
Hi Trudy,
One thing that’s making me nuts is why is the B6 sometimes easing my inner tension and sometimes not? Also I don’t always remember my dreams but sometimes I do. Making me think I’m not absorbing the B6 properly. I even increased the dose but nothing happens. What do you suggest I should do?
Best regards
Sandra
It may be absorption issues and the gut healing is needed. Depending on the fluctuations it could be hormone related (every month?) or stress-related (stress depletes both zinc and B6 in pyrolurics)
A quick hello from Brisbane, Australia! 😉
I keep reading your very interesting blog and I can’t stop thinking that your questionnaires describe me pretty well (+ family history of depression and schizophrenia)
I have always been an allergic person and when I tried to tackle them, I’ve realised I had even more food sensitivities. All of these reactions explain most of the multiple symptoms that I have (salicylates, casein, amines, sulfites, caffeine, codéine…)
With my naturopath, we’ve done some testing and from what comes out:
-low zinc
-low gastric acid
-malabsorption
-low potassium
-borderline high bilirubin
-hetero MTHFR 1298
– Alk P from 99 down to 50 in 2 years
She put me on supplements with Metagenics and I’ve started 1 week ago ( mostly Zinc, magnesium and activated B’s, and probiotics)
I read that testing pyroluria through urine is not always accurate. Do you rely mostly on your questionnaire and some blood tests?
Is low gastric acid another sign of pyroluria or just from some nutrients imbalance?
Are you enjoying ( or did you enjoy) your holidays in Australia?
Thanks 🙂
Laure
I rely on the pyroluria Q and response to supplements. Have you done the urine test and may I ask which lab and if it correlated with the score on the questionnaire?
I am enjoying Australia a lot!
Thanks Trudy,
I haven’t done the urine test. We talked about it with my naturopath. She told me there was a laboratory around Brisbane which could do the test. She said as the test is sensitive to heat, she doesn’t trust the companies that ask to send through the Post. I actually wouldn’t trust anything going in the Post with the weather at the moment 😉
The only test that we’ve done regarding my zinc level was through blood test with QML (serum 13umol/L (10-25) and red cell zinc 146 umol/L (180-260)). My B6 (whole blood) is at 18,8 ug/L (>12)
On your questionnaire, I am positive to about 27 out of the 42 questions. I have started looking at zinc and mental issues when I’ve realised that one part of my family is heavily affected with schizophrenia and social issues.
I am actually trying to solve annoying food intolerances and allergies.
Hi Trudy
Long story short- about 7 years ago I worked with someone from Julia Ross’s clinic for severe anxiety and depression. The lady who I worked with strongly felt i had pyroluria. We started the supplementation but i never felt results. We tried numerous other supplements as well. I did however react badly to B6. I ended up stopping the supplementation. Over the years I’ve tried numerous other things- GAPS, SCD, Paleo and other supplements. I’ve always had bad reactions to everything. Usually my brain gets too speeded up and is overactive. Now come this year I finally did the pyroluria test with with Dr Mensah and discovered I do in fact have pyroluria and am also an Overmethylator. I just got my protocol and am now starting treatment for both overmethylation and pyroluria. But I’m worried I’m going to have the same reaction to B6. Dr Mensah thinks this reaction is coming from the gut and yeast buildup. One other major issue I’ve had for several years now is severe sugar cravings especially chocolate. Do you think it’s possible that nothing has worked for me and I’m getting reactions due to this and yeast buildup/ candida? How would you approach this? I have been through HELL with my anxiety and depression. My life has passed me by and I am almost 35. I really need something to work. I do also have SIBO. I’m worried the treatment won’t work with SIBO but Dr Mensah says he does have many patients that have this and benefit from treatment. I’m just curious what your approach would be. I really want to figure out why I always react to most supplements specifically B6. Thanks for your time.
Julie
I’m glad you’re finding answers i.e. you have pyroluria. How do you react to B6? How much causes a reaction and is it the same reaction from vitamin B6 (pyridoxine) and P5P?
I’m digging into some info on people having B6 reactions/symptoms of toxicity. I have yet to see it in clients but have had feedback via social media that quite a few folks are affected. So anything you can share will help my search. For example what else do you react to and how? Are you currently on benzodiazepines or have used them in the past? SSRIs now or in the past? Use fluroquinolone antibiotics ever? Have Lyme disease or a tick bite? Heavy metals such as lead or mercury? Have herpes/get cold sores? Been tested for low oxytocin or given Pitocin during childbirth?
There is a candida-vitamin B6-oxalate connection – have you considered a trial of a low oxalate diet? Done an OAT test to see if oxalates are high? Done a stool test?
And lastly have any of the amino acids helped with the anxiety and depression? which ones and how much helped? and how much did they help?
Hi Trudy,
I am just starting the supplements for the pyroluria and reading your website blogs.
How much B6, P5P and Evening Primrose Oil should I take? I have about 20 symptoms on the Questionnaire? My supplement has 1mg of copper, Is that still too much? I am not gluten sensitive..thank you..I hope this helps with my anxiety..thanks for all your hard work..
Hi Trudy,
Re: Adbominal pain in pyroluria
My son was diagnosed with Pyrroluria 3 years ago, severe abdominal pain (left side, under the ribs) has always been his most debilitating symptom which almost abated once he started on the pyroluria protocol which has remained at the same dosages for the entire period.
It seems to be a rare symptom and our doctors are not convinced it is linked (but I am)
A few months ago the pain started to creep back and is now quite severe again.
Do you have an idea what the pathophysiology is behind the abdominal pain? I have read spleen congestion and ischaemia as possible causes and have treated accordingly to no avail, it does not respond to analgesia and is worse first thing in the morning
I have recently titrated up his P5P to dream recall with no effect on the pain and our functional medicine doctors are lost!
We have recently checked for Porphyria-negative, coeliac-negative SIBO-negative and his corrected urinary pyrole level is now 10.9 (it was >80 at the start) but he still has many of the symptoms from the checklist
I have just bought your book and will try amino acids but I thought I would ask your opinion on the abdo pain as I am a bit at a loss too.
I hope you can help,
Christina
Christina
My first thought would also be the spleen but the severe pain is not an ongoing issue I’ve seen with pyroluric clients. Since he still has many of the symptoms clearly the protocol is not working. Once this is addressed the pain may diminish (since you said it had almost abated initially). Stress makes pyroluria worse and causes dumping of zinc and B6 so I’d have the doctor look for bacterial or viral infection or parasites – all would be considered stresses for the body and could affect the spleen with or without pyroluria. Lyme also comes to mind as does liver issues too.
Thanks for your input Trudy, will follow up what you suggest.
Christina
Hello,
My son is 5.5 yrs old and MTHFR compound heterozygous with pyroluria.
Last year he had copper 154 and zinc 110 in blood and very severe symptoms.
We started the protocol and the symptoms are gone. But we now tested him, after one year, and his zinc is 88 and his copper 194!
How is this possible?
He is taking daily 55mg of P5P, 45 mg of zinc (picolinate and bisglycinate chelate), 350mg magnesium glycinate, 100 mg magnesium malate, 50mg molybdenum, biomedica c-max vitamin C, 50mg niacin,and other b complex vitamins (seeking health kids optimal multivitamin).
His amino acids test came back good.
His histamine is under control.
All of his other labs are good.
No copper sources in the environment/ diet.
What can possibly be wrong please? And how is it possible not having symptoms but having these labs? ( test was done twice to see if it was correct.
Thank you
Hi Trudy,
It’s been so great being able to read up so much about the treatment protocol for pyrrolles. I have two questions:
1) Ive read that we pyrrolians must avoid copper (and folate for undermthylators) BUT we are told to take pregnancy multi-vitamins that contain copper and folate before and during pregnancy. Any advice?
2) My blood pyrroles level was 89, but I just did the zinc test and I found the taste unpleasant and tingly. I could hold it in my mouth but I was happy to spit it out after 30 seconds. I also found that 22mg of zinc pol, taken after lunch or dinner resulted in big headaches for me, right in my forehead. I will try another form of zinc (optizinc) but perhaps I dont need zinc, even if my doc did put me on it… Any insight into this?
I dont feel different since starting all these supplements despite scoring highly on questionnaire and having a doc tell me I undermethylate, have high pyrroles and high histamine. My anxious tummy and feelings persist as do my intense dreams (that I often remember) , my noise and general sensitivities too and I have headaches every day. I was hoping treating the pyrroles would help! Any insight warmly appreciated:)
Ps: I’ve also noticed this constant sound in my ears that wasnt there before I started the protocol. I notice it more at night but I now notice it in the day in quietness. I’m a bit worried it’s a form of tinnitus or something. I stopped zinc pol 4/5 days ago but carried on with evening primrose 1000mg, cal mag and p5p . If you or anyone reading has any ideas about this too please let me know. Thanks!
Hi Jessica
What sort of sound to your hear in your ears? I hear a sort of hum/rumble that is relatively new. I didn’t even think about it may be related to the supplements I’m taking. I’d be really interested to know what your sound is like and whether you’ve managed to fix it by changing the supplements you take.
Hi,
Thank you for the amazing work you do.
I suffer from Mortons neuroma and read somewhere that its is due to copper….not sure if too much or too little. I have been taking boron for a few years for an invinceable parasite and worry it has thrown off my mineral balance. ( although boron regulated my periods at age 44, now I am 48). My thyroid is off and used to take iodine and it weirdly helped with mortons neuroma, but now when I take iodine, I feel pressure in my thyroid. I have had kidney stones in the past and I take lots of supplements ( my own guinea pig since I cant afford a naturopath and all the testing. I was exposed to toxic mold. I have been told I have ureaplasma, thus the chronic UIT’s and given a prescription for Azithromycin ( 500mg for 6 days), but I am afraid to take it since I have been trying so hard to fix my gut….should I take it to get rid of this infection that is causing stress? I am tired, losing hair, low ferritin so I take a spoon of black strap molasses which gives me instant energy but I worry now about its copper content. You seem like the only person who really cares to investigate when I feel like a hypochondriac. My mom and her mom died at 50 of kidney cancer and my dad was schizophrenic so I am surely a messed up health case with moderate social anxiety my entire life. I am almost gluten free and trying to figure out if I have candida or leaky gut. I try to juice veggies 3 times a week and it makes me go to back to sleep in the morning….detox reaction or too much sugar from carrots? Ive done a few detoxes from Ty Bollinger company but got bad headache when taking R Lipoic Acid. I live in Canada so vitamin d must be low. I have no family and a broken marriage. Should I take oxytocin to feel some love? WHere does one get that?
Something that might help people with stress…..magnesphere….I went for one session and felt like I had climbed a mountain then got a five hour massage…the feeling lasted for days. Magnetic resonance therapy. God help us all as we try to help one another in this toxic world.
God bless you for taking the time to help so many and care.
Diana
It can be tough working on your health alone but a few things jump out at me – I don’t like hearing almost gluten free and going to sleep after juicing sounds like too much sugar. You mention social anxiety and a need for oxytocin – when I hear this and candida, parasite and thyroid health I think pyroluria.
Here is additional info on pyroluria and oxytocin https://www.everywomanover29.com/blog/oxytocin-for-social-anxiety-pyroluria-depression/ And don’t forget that hugs and showing kindness also gives us a nice oxytocin boost. Sending you a virtual hug!
I’m afraid I don’t much about morton’s neuroma
Thank you Trudy for your reply, the info on oxytocin and most of all, your virtual hug.
I meant “almost gluten free”…. 100% at home , just the occasional accident when eating out.
Seems like a lot more makes me bloated after a meal these days as well.
I believe all my problems started with toxic mold and I just can’t get answers or solid solutions despite all my trials. I guess I just hope that a little love boost through oxytocin will jumpstart my immune system enough to find the energy to continue the investigation and healing.
It’s amazing that I’ve never heard of pyroluria until you with all the health stuff I research.
God bless you and a big virtual hug right back.
Diana
Diana
Maybe you should read about salicylate sensitivity and sulfur intolerance. I have both and I had great relief by reducing the ammount of these compounds in my diet.
The symptoms vary a lot, you can find some lists on the internet. Mine are: increased anxiety, depression, severe allergic rhinitis, abdominal distension, ear infections(frequent), dandruff and hair loss, despite of the supplements I’m taking (I tried/trying a lot of things).
It’s hard to notice since many of them are considered very healthy (vegetables, healthy fats, herbs…) and they really are, for most people.
No matter what I did, I couldn’t heal until I reduced these foods in my diet, and there is many people out there with the same sensitivities.
Hope this information can help you.
Obs: I still eat medium salicylate foods and sulfur foods, I just reduced the intake to my particular threshold. And many people are only sensible to one of these compounds.
Hi Natalie,
It was a humming/vibrating feeling/sound I guess. It went and I have a feeling I reduced my supps (b6 and zinc) and worked up much slower. It did just go! Sorry I have no magic cure!
Thanks for the reply Jessica. That is really interesting to know as my sound is definitely humming / vibrating. I will experiment with my supplement dosages to see if it helps
Trudy,
My teenage son seems to have some of the symptoms of pyluria. He doesn’t tolerate oral supplements (causes congestion), so I asked his doctor to order MagnaZinc transdermal cream from Lee Silsby. Perhaps it is a coincidence, but the “edge” seems to be taken off (calmer, better mood and more social). I was going to ask his doctor to prescribe either the transdermal b complex or just the P-5-P transdermal cream. What would you suggest? He has no dream recall.
Thank you,
Rachael
Trudy-thank you so much for all the knowledge you share on this site! I had some questions about supplementing with zinc. I am thinking of this for my daughter and I. Let’s say we take the questionnaire and feel we need to supplement with zinc and B6. Would it be smart to start with a B Complex instead of just B6? (I am on B Complex Plus from Pure Encapsulations and I have been considering starting my daughter on it.) Also, I already take mineral 650 without copper and iron from Pure Encapsulations-it has 12.5 mg of zinc picolinate. My daughter is not on any of these and I am wondering if I should start there. Or would it be better to start with high doses of zinc by itself? And, how would we ever know if we were getting too much vitamin B6 or zinc? Is blood testing accurate?
Kristie
When a client has pyroluria we use both B complex and B6, and copper-free multi and additional zinc, but some folks choose to be conservative and start with B Complex and multi only. We use symptom resolution as a clue because blood work is not accurate.
Hi ,Trudy I am Rahul from India. i checked my symptoms with your questionnaire . Many of them match with my symptom. My Serum zinc level is 115 ug/dL and Alkaline phosphate is 110 U/L. Should i go with zinc and B6 supplement . I always fear about zinc and B6 toxicity. Your comment bring hope in my life . Thanks
Rahul
I use the questionnaire and response to the supplements as testing serum is not very accurate.
Hi Trudy
I have been using the protocol on pyroluria..is 60mg of zinc, 400mg B6 and 100mg of P5P and EPO..a good amount to start with..I don’t see much of a difference but maybe its too soon. I am not gluten sensitive either.
I just purchased your book and hope I get some more insight on this journey to healing. I have been following you for many years and never realized that I have the pyroluria..I completed the questionnaire and have 25 or more symptoms…
Thanks for your great work..
Eileen
I suggest reading the pyroluria chapter (and the rest of the book) and going through the checklist I provide in this blog. My clients with pyroluria typically start to notice an improvement in a week to 2 weeks
Dear Trudy,
A big worry for me is that Zinc is used clinically to suppress cortisol. As I already have cortisol insufficiency (with high adrenaline), I am reluctant to suppress it further.
Can you think of a way which may work for me?
Thanks for your great work!
CJ
Kindly share the research on this and then I’ll comment further.
Dear Trudy, As ‘they say’, I lost the thread! Zinc is used clinically to lower cortisol. Many of us (and I) have this pathway: Hashimoto’s followed by subclinical hypocortisolism. Zinc & a lot of the adaptogenic herbal supplements lower cortisol further, exacerbating my primary symptoms of anxiety, depression and sleeplessness.
I can tick an awful lot of these pyroluria boxes! I take Kirkland B100s daily which contain 100mg of B6. P5P did not improve my symptoms.
The insomnia is a constant but the periods of anxiety & depression (usually one is predominant) have been randomly cyclical for three-plus years.
I live in Thailand so much of this testing is simply not available. On the plus side, I can order most of my own serum & urine tests.
Zinc acutely and temporarily inhibits adrenal cortisol secretion in humans.
https://www.researchgate.net/publication/21452442_Zinc_acutely_and_temporarily_inhibits_adrenal_cortisol_secretion_in_humans_A_preliminary_report
Gently weaning Mirtazapine & Trazodone (they worked for two decades!) & stupidly hooked myself on 1mg Alprazolam…for the second time!
So I’m chary of trying Zinc. In fact, I’d like to get Zinc-Copper serum labs done before I try even 15 mg.
If you see anything with my name on it, please let your readers (and me) know! Thanks for your great take on the human condution, Trudy.
Thank you so much for all of the information you share, Trudy!!
You introduced me to the whole issue of pyroluria a few months ago now. I did the zinc test at that time by getting liquid zinc and dropping it on my tongue and I didn’t taste anything until about the 10th drop. I started taking B6 P5P and more zinc after that. I just did a little more reading about 3 weeks ago and realized I wasn’t taking enough of the zinc or B6, so I increased my dosage 2-3 times.
I just had a dream the other night!!! This is a big deal for me. In my early life, I had horrible nightmares all the time, but I still kind of loved them because they were so psychedelic and surreal and interesting, even though I would wake up in terror and I feel like it was at the root of a lifelong battle with insomnia. Then I basically just quit dreaming altogether when I was about 22. Now I’m 46. So, I don’t think it was a coincidence that I had a dream after increasing my B6 dose. And, this one was a happy dream. 🙂
I hear conflicting things about the zinc and copper issue. You and others say to stay away from any copper, but others I respect indicate we need a tiny bit of copper with the zinc. I have compromised, for now, by taking the Bulletproof zinc supplement, which has a tiny bit of copper in it in the morning, as well as a zinc picolinate supplement later in the day. I may be shooting myself in the foot there, I just don’t know. I will look into getting your recommended zinc supplement.
I’ve been super busy and stressed out, which has prevented me from attending your last couple of summits, and from learning about and implementing the protocol as much as I would like. And, I can tell it is really, really bad for me. I can’t wait to have some time to focus more on the protocol and healing myself. The last 13 + years of health issues have been really hard – but I really do feel a little more mental focus and clarity on the pyroluria protocol and with some other things I’ve been doing recently, and I pray for a more normal, less stressful life soon – thanks at least in part to the information I’ve learned from you. Thank you~!!
Ava
Thanks for sharing and good to hear about the B6 and dream recall, and more mental focus and clarity. The clue will be how you respond to a zinc only product in terms of any remaining pyroluria symptoms and improved ability to handle stress.
By the way, I don’t consider 2mg of copper in a product with 15 mg zinc (like Bulletproof Zinc with Copper) to be a tiny amount. It depends on what one eats but typically the diet provides enough copper.
Since you’ve missed some summits my book “The Antianxiety Food Solution” is a great place to resource with an entire chapter on pyroluria. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Trudy,
What do you think of Morley Robbins protocol?
Sue
Si
Please share additional information and I’d be happy to comment. Please also share if it’s helped you and how it’s helped, and if the pyroluria protocol has not.