Paleo Diet: Raw Paleo Diet and Lifestyle Forum
Raw Paleo Diet Forums => General Discussion => Topic started by: raw on February 13, 2013, 02:49:52 am
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What is pyroluria? How we can recover from this? Any one has any success story to share? Thanks
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It's apparently a genetic condition where hemoglobin synthesis creates an unwanted byproduct that binds to zinc and vitamin B6, creating deficiencies in both. People that have it are prone to psychological issues. Some doctors are skeptical about whether it really exists, but I've read personal accounts of people being treated for it and having a complete turn-around in their well-being. I myself tested positive for it (the urine is tested for the presence of pyrroles). I've supplemented with zinc and a B-complex in the past. I'm rather sensitive to the zinc, and if I take too much at once it makes me nauseous. It seems odd to me, as I would think if I was deficient in it my body would readily accept the supplement. I've backed off the zinc for the time being.
Here's a link about pyroluria: http://nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria (http://nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria)
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Cheaper forms of zinc supplements do promote nausea and the packages typically warn to take them with food to minimize nausea. Chelated zinc is more digestible and absorbable and the packages sometimes even advertise that they don't have to be taken with food, though some do still recommend it in the "Directions."
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Pyroluria therapy seems to be helping me (see recent posts in my journal). There is frustratingly little about pyroluria in this forum and the Internet in general. Has anyone had any experience at all with pyroluria or the recommended therapies?
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I think I developed vitamin B imbalance by taking P5P. The pills are 50mg and I was taking 1-2 a day for 2-3 weeks. The skin around my fingertips started peeling a lot, especially after taking shower, going to the sea and even without any contact with water the top-most layers of skin were easily peeling. I looked online and one cause for this was vitamin B deficiency. I don't think my diet is vitamin B deficient at all, so I realized it must be that taking so much of one vitamin B throws the others in imbalance and potentially creates deficiency. I stopped taking it and for a week that didn't change much the condition on my fingertips. Finally I bought a vitamin B complex and ate some 200g of liver, and next day the skin was back to normal. I'm very sure it was caused by P5P, I've never had such an issue before. So just a small warning to people trying this out. It was causing other troubles as well, like difficulties to fall a sleep (as if my brain was turned on to the max and I just can't calm it down enough to fall asleep..).
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I have long advocated eating the whole animal in order to get all the vitamins and minerals in their optimal portions.
Its also very important to get the proper fat to protein ratio, I eat every once of fat I can scrape from an animal. The brain, stomach fat, bone marrow, eyeballs etc.
Excess protein could be a culprit for this condition.
Also enzyme deficiency in the gut will inhibit absorption of b vitamins and minerals
Drinking blood and eating organ meats provides a B vitamin and zinc boost.
Eating a little bone meal could be beneficial.
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I think I developed vitamin B imbalance by taking P5P. The pills are 50mg and I was taking 1-2 a day for 2-3 weeks.
I don't think my diet is vitamin B deficient at all, so I realized it must be that taking so much of one vitamin B throws the others in imbalance and potentially creates deficiency.
That's exactly it. Taking one single B vitamin will cause a deficiency of the other B vitamins. They need to be taken together.
I take 50 mg B complex twice a day plus 25 mg P5P twice a day, and 1,000 mg niacin 3x daily. By taking them together it helps prevent an imbalance.
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Thanks for sharing your experience, aLptHW4k4y. You're negative experience is one reason I don't prescribe to others, wouldn't want anyone doing anything I do just because I have success with it, and encourage people to investigate things themselves before trying them, and if there are any risks, to discuss it with a healthcare practitioner. I would also caution people to be particularly careful with zinc and the pyridoxine HCL form of B6, for which there is far more evidence of side effect risk than P5P, as there is for other most other vitamins.
Instead of prescribing, I just share my experience. Before considering trying pyroluria-related supplements I first read up extensively on it, learned about how to check and monitor my zinc and B6 levels, checked my health status before and continued to monitor during therapy, and I try to track significant stuff in a health journal. One thing I read is that B6 supplementation "should be balanced by vitamin B12 and biotin" http://perfecthealthdiet.com/category/supplements, (http://perfecthealthdiet.com/category/supplements,) which are often included in B complex supplements, which fits with what DaBoss said. I saw Mg mentioned in this regard once too, which I was already using in epsom salt baths as well as supplementation. I also read that one should avoid supplements that contain folic acid, which many B complex supplements do, and instead look for folate. Unfortunately, my current supplements contain folic acid, so I'll look for that in the future.
P5P is supposed to be energizing, via helping the mitochondria produce energy, and I found that taking a big dose close to bed did seem to keep me up that night, so I try not to take any after 8pm. My latest dose of the day is taken with supper.
On the P5P and skin front I currently take much more P5P than you and luckily I haven't had any new or worsened negative skin issues since doing so. Coincidentally I was just noticing yesterday that the skin around the cuticles of my fingers is further improved to probably the best it has been in decades. It used to peel quite a bit in that area and the remnant peeling has cleared up. I do sometimes take other B vitamins and other supplements, though I don't get any additional skin issues when I don't.
Something else I do that could be helping my skin but is not raw is consume some low-heated bone broths (I keep meaning to try raw broths too). I tried a bone meal supplement and kosher gelatin powder, but seem to get the best results from bone broths, though it's difficult to say with multiple factors at play.
I agree with trying to eat as much of the whole animal as one can manage and I also eat lots of fat and avoid excess protein. I do notice that my skin does better when I eat more fat and less of the easily-digestible carbs.
Various health issues, such as enzyme deficiencies and gut dysbiosis, are indeed known to inhibit absorption of b vitamins and other nutrients, so that unfortunately not everyone is able to get all the nutrients they need just from whole foods and not everyone heals overnight.
I'm also concerned that taking supplements every day might in the long run depress my body's own ability to generate the nutrients, so I don't take them every day, aside from P5P (and some days I take much less of that), and I'm trying other foods and therapies that are supposed to help the body produce its own nutrients (blogger Todd Becker writes about this). For example, prebiotic fermentable fibers reportedly promote the good bacteria that are said to heal the gut and aid with breaking down and absorbing nutrients. My hope is to some day not need any supplements.
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Thanks every one for ur replies on pyroluria. I have some questions to ask you. I know a patient who is ONLY 17th yrs old boy and suffering from severe depression for the past 2 yrs along with anxiety. Recently after accidentally taking potassium bicarbonate he is suffering super confusion, lower heartbeat and numbness in jaws.
His orthomolecular Dr prescribes him zinc. He takes one tablet at night. But he feels vomiting . What is the solution for that? In past taking mg, he gets diarrhea. Should he still can take mg? He used to take mg equal or more amount of calcium 2/3 hrs back of mg intake. Orthomolecular Dr diagnoses his pyroluria based on the white spots in his finger nails and not recalling dreams.
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Thanks every one for ur replies on pyroluria. I have some questions to ask you. I know a patient who is ONLY 17th yrs old boy and suffering from severe depression for the past 2 yrs along with anxiety. Recently after accidentally taking potassium bicarbonate he is suffering super confusion, lower heartbeat and numbness in jaws.
His orthomolecular Dr prescribes him zinc. He takes one tablet at night. But he feels vomiting . What is the solution for that? In past taking mg, he gets diarrhea. Should he still can take mg? He used to take mg equal or more amount of calcium 2/3 hrs back of mg intake. Orthomolecular Dr diagnoses his pyroluria based on the white spots in his finger nails and not recalling dreams.
If he had bad results with magnesium he probably used a bad form. I take about 1,000 mg magnesium daily from magnesium bound to amino acids, and magnesium chloride - those are the best forms.
For pyroluria, I'd recommend the acrive forms of the B vitamins. A good b complex as the basis (like the one from GI Pro Health [has active forms of B12 and B9]), and add to that B6 P5P, and B2 riboflavin-5-phosphate. I'd also recommend some vitamin c, and for good measure all the fat soluble vitamins (Vitamin A/not carotenes, Vitamin E, K1+K2, and D).
If they're having trouble taking the zinc supplement, it could be the wrong form or they may have a sensitive stomach.
http://umm.edu/health/medical/altmed/supplement/zinc (http://umm.edu/health/medical/altmed/supplement/zinc)
"Zinc is available in several forms. Zinc sulfate is the least expensive form, but it is the least easily absorbed and may cause stomach upset."
Good luck.
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You're negative experience is one reason I don't prescribe to others,
Your! Lol :P