Pyroluria

[Anthony]

Hello,

 

Could someone please tell me what the recommended doses are for zinc and B-6 for an adult with pyroluria?

 

Is it best to take zinc picolinate or is zinc gluconate okay?

 

Is ordinary vitamin B-6 okay or do I need the active form of B-6 called P-5-P?

 

I also read on a forum that for people with pyroluria it's better to take flaxseed oil instead of fish oil? Do you know if that's the case?

 

Thank you so much for your thoughts and best wishes for good health

[Chemar]

Hi Anthony and welcome

 

as we didnt have to deal with pyroluria, I would normally refer you to an excellent thread by FJ* on BrainTalk where all these questions are clearly answered, but unfortunately BT had a major system crash last month and is not yet back online..........

 

hopefully someone else who has the info will be along soon to help

[orthomolecular]

Hello,

 

Could someone please tell me what the recommended doses are for zinc and B-6 for an adult with pyroluria?

 

Is it best to take zinc picolinate or is zinc gluconate okay?

 

Is ordinary vitamin B-6 okay or do I need the active form of B-6 called P-5-P?

 

I also read on a forum that for people with pyroluria it's better to take flaxseed oil instead of fish oil? Do you know if that's the case?

 

Thank you so much for your thoughts and best wishes for good health

 

I don't recommend you do this on your own. But I can tell you what I know and what seems to work for me. (And I am an adult.)

 

I take more than 2,000 mg. of b6 each day. I take the bulk of that in pryidoxine form, using the 250 mg. capsule. I either take 500 mg. four times a day or sometimes I will do 750 mg. with breakfast and lunch and 500 with dinner.

 

When I started the supplements I had started at 1,000 mg. per day. I would only take 500 mg. with breakfast and 500 mg. with lunch. I couldn't take b6 any later than that in the beginning because it would prevent me from sleeping. Now I don't have that problem for some reason.

 

Also increase the doses slowly. Try increasing the dose by one quarter. Too much of an increase and your body will let you know by vomiting most likely.

 

You should use some p-5-p. Just take 50 mg. of p-5-p each time you supplement the pyridoxine. That combo of 50 mg. of p-5-p should be enough of the active form.

 

BrainTalk forum has been down and Fran does know her stuff on pyroluria. I wish that forum were back online.

 

I would take 600 mg. of zinc each day when I was in the loading phase. That is 200 mg. of zinc with each meal. After the loading phase I basically just took about half that amount, either 90 mg. or 100 mg. of zinc with each meal. Sometimes that dose is still not quite enough for me and may take a little bit more sometimes.

 

There is a loading phase with zinc but not for b6 for some reason. I use different form of zinc. Sometimes the citrate, sometimes the twinlabs which I think is glucanate. I don't think it makes that much of a difference. Sometimes the one in the right dose is probably the way to go. But sometimes I try a different form to change things up.

 

I also like the sublingual form of p-5-p by source naturals. Sometimes I just like the convenience of this form and it does seem to work pretty quickly. I get this need to chew on the inside of my mouth. It doesn't always last very long but when it happens sometimes I like to take the subL p-5-p and I feel the b6 hitting my brain almost instantly. That form works great for me.

 

Do not forget copper and manganese when taking high doses of zinc. When you do take copper you may not be able to take more than 12 mg. per day (6 mg. per meal). Too much copper will make you nauseated. So, if you forget the copper it can be a slow process to get your copper levels back up.

 

I have read that for pyroluria they recommend you take either evening primrose oil or borage oil.

 

If you are an adult and have pyroluria you might also seriously consider adding some digestive enzymes. I am more than 2 years into supplementing with vitamins and minerals. But a while back the b6 was not working for me and I was having some digestive problems. I now believe that the bulk of b6 being in the snythetic form is why I was having this problem. My body was telling me in a number of ways that my pancreas was not doing its job. And for me it wasn't just enzymes, but I needed to supplement bicarbonate too. I have read the first thing that the pancreas stops producing is bicarb, then enzymes and then the last is insulin.

 

Philpott and Kalida's book Brain Allergy said that with severe b6 and zinc deficiency the pancreas is not able to function properly. (Both those nutrients are critical for protein digestion.) I know those enzymes has helped and particulary with the b6. I still use the p-5-p but now if I forget I won't feel much difference. I don't know if you have any digestive issues at all. Mine weren't much to speak of really. Mostly belching, which was eliminated with the bicarb. I honestly beleive that digestive enzymes are important for adults with pyroluria. (Enzymes for children with pyroluria I am not really sure about though.)

 

I am now using digestive enzymes (with food) and systemic enzymes (taken on an empty stomach) and think this is something you may need to include as well. Unfortunately using enzymes can be a bit complex.

[orthomolecular]

I forgot to recommend magnesium. When you take high doses of b6 you must take magnesium or you will have the problem at those doses of tingling in the hands and feet. I have read and have experienced this myself and it is when you don't take enough magnesium with those high doses of b6.

 

I don't use any other brand of magnesium except Maginex. I read in Mildred Seelig MD's book on magnesium about this special form. It does not cause any GI problem. It can be embarassing having a bowel movement in a public restroom because of the magnesium causing volcanic like parastolic contractions. Maginex does not cause me any of those problems and all other magnesium supplements seem to do that to me, even Floridex which is made from foods and plants.

 

You can buy what ever type you want, of course, but you need to supplement magnesium with all the b6.

[Chemar]

Good info Orthomolecular!

 

I do just want to add a word of caution here, as the doses that Orthomolecular is using are very high. PLEASE to all who are reading this thread....DO NOT attempt to supplement with such high doses of B6 and Zinc without being under supervision of a health care professional!!

[Claire]

Ortho, that is a lot of vitamins! If it is taking you that much to control it, then I would think that perhaps you are having severe absorption problems... ? I personally believe that pyroluria can be a result of oxidative stress and solving that will help the pyroluria. That's what happened with my son, and his pyroluria is gone now...without unusually high B6/zinc dosages.

 

Anthony, Let me reemphasis Chemar's point: Please find a doctor to recommend and monitor the vitamin levels. I hate posting actual supplement amounts on the board (though I know that I have somewhere, sometime), because everyone is so different. If you got the test done through pyroluriatesting.com, I know they used to have a Pfeiffer doctor contact your doctor with recommended dosages (though Pfeiffers' dosages are also higher than I care for also).

 

Claire

[orthomolecular]

Ortho, that is a lot of vitamins! If it is taking you that much to control it, then I would think that perhaps you are having severe absorption problems... ? I personally believe that pyroluria can be a result of oxidative stress and solving that will help the pyroluria. That's what happened with my son, and his pyroluria is gone now...without unusually high B6/zinc dosages.

 

 

Claire

 

Yes, there was some serious stress which is still not completely resolved yet. I was pretty sick after that stress, fatigue, muscle weakness, mood swings, irrational fears, trouble spleeping, etc.

 

But I am working on the problems with the synthetic form of b6 which gave me some digestive issues. I supplement enzymes all the time (meaning with all meals AND also on an empty stomach) and sometimes I supplement some bi-carbonate. (Some meals that are not so heavy don't seem to need the bi-carb so.)

 

I think I have what would be considered pancreatic insuffiency. My pancreas was not producing the bi-carb and enzymes, so I am supplementing those. A severe b6 and zinc deficiency would explain why my pancreas is not producing bi-carb and enzymes.

 

I don't know if the enzymes would help lower the b6 dose. (I started the enzymes only about two months ago, so probably have another 4 months more of supplementing these doses of enzymes.) I think if it did help it would be a small decrease only in the b6. But I do feel that the pryodixine (synthetic) form is easier to tolerate with the enzymes.

[Steve]

Hi, I have had chronic zinc deficiency for a long time (I could tell because I've always had skin problems and white spots on my nails). I also had severe malabsorption problems and have been helped by taking enzymes with every meal for about 6 months along with probiotics. I think my absorption problems are a lot better now thanks to enzymes, probiotics, lots and lots of fiber. A recent amino acid analysis showed that I was also severely deficient in B6. I then began to suspect pyroluria was the root cause of my problems. But I just got back my results and the result is 15 which is supposedly within the normal range. My question is could the reading be much lower now than just a couple months ago because of the large amounts of antioxidants Ive been taking (I am currently taking 300mg ALA 3x per day, 1g vitamin C 3x per day, 400IU of natural High Gamma vitamin E, selenium 200mcg, amongst other herbal/mineral supplements) and also the Zinc (65mg along with a pretty high protein diet) and 50mg of P5P? My doctor wants me to get off all my supps for about a week and retest but I am hesitant because I have made so much progress. Anybody with experience can offer any advice on whether a reading of 15 could still be pyroluric and that its just controlled now by all the supps I take?

[Chemar]

Hi Steve and welcome

 

yes, being on supplements when you take the pyroluria test can give you a normal reading when in fact you may have pyroluria. It is generally recommended to go off supps for a few weeks before testing, tho I sure can see where you are reluctant to do so when you are responding well to the supps

[orthomolecular]

A recent amino acid analysis showed that I was also severely deficient in B6. I then began to suspect pyroluria was the root cause of my problems. But I just got back my results and the result is 15 which is supposedly within the normal range.

 

It is not clear what test (name of the test) you had that showed 15 as the result.

[Steve]

A recent amino acid analysis showed that I was also severely deficient in B6. I then began to suspect pyroluria was the root cause of my problems. But I just got back my results and the result is 15 which is supposedly within the normal range.

 

It is not clear what test (name of the test) you had that showed 15 as the result.

 

 

Test to check for pyrroles in the urine

[orthomolecular]

Thanks for the clarification.

 

This post here says 12 was considered borderline.

 

http://www.latitudes.org/forums/index.php?...=648&hl=kp+test

 

"I am starting to add zinc and b2, since he is borderline at 12, and may have him retested."

 

When I was sick (I have had ulcers develop) I would stop my supplements for a couple of days. Things will level out for you, I think. I mean that you may at first notice the symptoms coming back (the first day) but things do get better and you hardly notice any symptoms once your body gets used to being without supplements. Honestly, if I stopped all of my supplements I probably wouldn't do that bad for a a short while because the body can adapt to this change. Now, if you anticipate any stress during this period then you should definitely

 

That has been my experience. I don't think that taking a break from the supplements will cause much of a setback for you. You are doing this for medical reasons so I think it does have some benefits. Just go back to the doses you were taking after the test is over.

[Guest]

Steve,

 

Did you do the Pyroluria test before supplementing zinc? Then is this the second time testing for Pyroluria or is it just the first time? I thought the first time of testing for Pyroluria was supposed to be tested without supplements. Then after you start treatment for Pyroluria if you have it you test with the supplements. That's how I thought you're supposed to test, but maybe someone else can fill us in if that's the correct way or if you are supposed to go off supplements everytime you test.

 

Carolyn

[Steve]

Steve,

 

Did you do the Pyroluria test before supplementing zinc? Then is this the second time testing for Pyroluria or is it just the first time? I thought the first time of testing for Pyroluria was supposed to be tested without supplements. Then after you start treatment for Pyroluria if you have it you test with the supplements. That's how I thought you're supposed to test, but maybe someone else can fill us in if that's the correct way or if you are supposed to go off supplements everytime you test.

 

Carolyn

 

 

This is the first time testing. I took Zinc before the pyroluria test because I've known I've had problem with Zinc for years. Even after supplementing with zinc I still felt I was zinc deficient. I started taking B6 (p5p) a few weeks before the pyroluria test because that was a deficiency that I didn't realize I had earlier and only started wondering about pyroluria when both of those came back very deficient on my amino acids analysis. Now that I take large doses of antioxidants though my zinc requirements seem to be a lot lower (I don't get white spots on fingernails for starters) which also seems to be consistent with pyroluria. I also felt I did way worse whenever I experimented with omega 3 oils which also seems consistent with pyroluria.

 

I think I will try testing again without zinc/b6 for about a week and see how I retest. I will stay on the antioxidants though. Thanks for your concerns.

[Claire]

Steve,

 

I don't see the need to retest without supplements, as long as the supplements are keeping the pyroluria levels within fairly normal range, it really doesn't matter whether you have it or not, because you are already managing it with the supplements you are taking. Carolyn was just answering your question that yes supplementing can affect results, and she is right.

 

I had zinc and B6 deficiencies and didn't have pyroluria. My son did have pyroluria...his measurement was 60! As I have posted before, I think pyroluria is a secondary disorder caused in part by oxidative stress. We have been correcting the oxidative stress and the pyroluria went away. He only takes 33 mg total of B6/P5P now and 46 mg of zinc daily now, and his levels are consistently under 10.

 

I wonder why you are taking that much ALA though....Glad you are being watched by a doctor. ALA is quite controversial. Have you done the Spectracell.com FIA 5000 blood test for antioxidant and vitamin levels (no doctor's signature required, unless you want insurance to cover it). That would really guide your doctor as to exactly which antioxidants you are low in. It costs $300 though. There are other antioxidants that can help with oxidative stress that may not be so controversial... In particular, glutathione is a common one to be low in, it is not controversial and is very helpful.

 

Do you have issues with metals? If you haven't done the doctor's data hair test (www.directlabs.com), I recommend it, especially if you have been on antioxidants for ~3 months, as you would likely be excreting metals. It costs ~$90.

 

Claire