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Let's discuss pyroluria  This thread currently has 14,432 views. Print Print Thread
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TJ
Sunday, June 19, 2011, 10:07pm Report to Moderator Report to Moderator

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Kyosha Nim
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During the course of the discussion on the recent thread Mind-Body Connection in Bipolar Disorder, the topic of pyroluria came up as a possible cause for bipolar disorder and other mental illnesses.  I feel like this could be a viable lead for me in my on-going quest for better health, so I'd like some more discussion on this.

In essence, pyroluria is a deficiency in B6 and zinc caused by the overproduction or incorrect production of pyrroles.  The pyrroles bind to these nutrients or block their absorption (depending on who you read) -- or maybe both???
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Symbi
Sunday, June 19, 2011, 11:43pm Report to Moderator Report to Moderator

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Good one TJ!  

The protocol is working for me.  Recently added naicinamide (methylated B3) and my anxiety has never been this low.  Really worth checking out.  Have had my zinc serum lelels checked and they are on the low side even though I supplement with 25mg of elemental zinc a day for over a year now (though I read the serum can be unreliable since if you're low you can leach it from your bones  ).  So many skin problems, chronic dryness, worry, chronic fatigue, PMS (funny how PMS could really be pyroluria by another name - the vitamins Zn and B6 are the same); so many things have improved.

Have to run but will be back to discuss more soon.


INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

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Curious
Sunday, June 19, 2011, 11:44pm Report to Moderator Report to Moderator

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Rather than speculating whether you have pyroluria or not, you can do a urine test. The test is checking your kryptopyrrole levels. If they are high, you have it, if they are lot, you don't.
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brinyskysail
Sunday, June 19, 2011, 11:59pm Report to Moderator Report to Moderator

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I'd love to be tested for all kinds of things, but that involves $$$


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cowgirl1988
Monday, June 20, 2011, 12:09am Report to Moderator Report to Moderator

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Quoted from Symbi
Good one TJ!  

The protocol is working for me.  Recently added naicinamide (methylated B3) and my anxiety has never been this low.  Really worth checking out.  Have had my zinc serum lelels checked and they are on the low side even though I supplement with 25mg of elemental zinc a day for over a year now (though I read the serum can be unreliable since if you're low you can leach it from your bones  ).  So many skin problems, chronic dryness, worry, chronic fatigue, PMS (funny how PMS could really be pyroluria by another name - the vitamins Zn and B6 are the same); so many things have improved.

Have to run but will be back to discuss more soon.


Where can one get this "naicinamide" from? I am in Australia, hopefully this won't make it difficult to get a hold of...



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TJ
Monday, June 20, 2011, 12:16am Report to Moderator Report to Moderator

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I'm tentatively planning to get testing done.  I'd like to find a naturopathic doctor or some other kind of holistic health practitioner to do this for me, but I wanted to have some discussion before taking that step, i.e. doing my homework before spending my money!

Here's a "quiz" for it with my answers: http://www.naturopathyonline.com/PatientRoles/pyroluria_quiz.htm

Quoted Text
Do I Have Pyroluria?

Here's a questionnaire to help you determine if you or someone you care about has pyroluria.

1. Do you tend to skip breakfast or have morning nausea?
NO

2. Do you tend to be anxious?
YES

3. Do you have other members in your immediate or extended family with schizophrenia?
NO

4. Are there members of your immediate or extended family who have committed suicide?
NO

5. Do you have white spots on your nails?
NO (since BTD)

6. Did you get a "stitch" in your side when you ran as a child?
YES

7. Did you have moderate to severe acne as a teenager?
NO

8. Do you have pain or creaking in your knees?
YES

9. Do you have cold hands and feet?
YES

10. Do you have stretch marks as an adolescent or adult even without a large weight gain or loss?
NO

11. Are your teeth or were your teeth before orthodontic treatment crowded with teeth growing over teeth?
NO

12. Did puberty start a little later for you than others?
NO (not that I remember)

13. Are you easily tired?
YES

14. Do you tend toward apathy?
Only when fatigued

15. Do you have a tendency toward iron-deficiency anemia or test borderline?
UNKNOWN

16. Do you have eczema or psoriasis?
NO

17. Do you have tingling sensations or even tremors in your arms or legs?
Not now.  I have in the past because of ergonomic problems with my workspace, but they went away went chiropractic treatment and changes to the workspace.

18. Do you tend to have paler skin than other family members?
YES!!!  Brown hair and brown eyes just like my brothers, who all tan well.  I burn, then I turn white/pink again.

19. Do you tend to get overwhelmed in stressful situations?
YES

20. Do you have trouble remembering your dreams?
YES

21. Are you now or have you been a vegetarian?
NO

22. Are you now or have you before been an alcoholic?
NO, but if I'd ever started drinking I probably would have become one.

23. Do you find yourself socially withdrawn and dependent fairly strongly on one person?
YES to "socially withdrawn".  To the "dependent" part, at times.

If you answer yes to 12 or more of these questions, then you may have pyroluria and should consider getting the lab test done, as mentioned on the description of pyroluria page.


8 yes's, plus I'd count #14 and #23 together as one more, for 9.  Still not the 12 called for by the quiz, though.  Hence the interest in further discussion.
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cowgirl1988
Monday, June 20, 2011, 12:24am Report to Moderator Report to Moderator

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I just scored a 15, without answering 2 of the questions....could this be what sets off symptoms of chronic fatigue syndrome too???


Nomad
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brinyskysail
Monday, June 20, 2011, 12:24am Report to Moderator Report to Moderator

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Symbi, are you using magnesium oil?  Taking zinc without taking magnesium (and the oil is really the only form that the body can truly absorb) depeletes the body of magnesium which can quickly lead to a boatload of symptoms including many of the symptoms you're trying to prevent.


There is a good in every bad  
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Amazone I.
Monday, June 20, 2011, 4:50am Report to Moderator Report to Moderator

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I observed the lack of B6,mg,zink is a typical nonnie issue ...but perhpas might lead to explorerdom as well ...  


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BTypeAUS
Monday, June 20, 2011, 4:52am Report to Moderator Report to Moderator

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Very interesting subject, my 12 year old autistic son had the urine pyroles test done and his is quite high, the dr has out him on a supplement of zinc and magnesium among other things ..the only problem is getting him to take it  


B+ Nomad, mum to two type O+ boys (21 and 14) and husband type O+
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BTypeAUS
Monday, June 20, 2011, 4:53am Report to Moderator Report to Moderator

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Quoted from cowgirl1988


Where can one get this "naicinamide" from? I am in Australia, hopefully this won't make it difficult to get a hold of...



You can get the pyrroles test done at nicholades and sullivans labs ...ask ur dr which ones do it. Are u in brusbane?


B+ Nomad, mum to two type O+ boys (21 and 14) and husband type O+
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Lin
Monday, June 20, 2011, 1:17pm Report to Moderator Report to Moderator

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Very interesting I had never heard of this disorder. I imagine taking the test is perhaps best as many of the symptoms could apply to other health issues.


Gluten/Casein and Yeast sensitivity.
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cowgirl1988
Monday, June 20, 2011, 9:35pm Report to Moderator Report to Moderator

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Quoted from BTypeAUS


You can get the pyrroles test done at nicholades and sullivans labs ...ask ur dr which ones do it. Are u in brusbane?


Unfortunately Im in adelaide...not sure that we have nicholades and sullivans labs down here??? will have to do some research. Cheers  


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Symbi
Monday, June 20, 2011, 11:18pm Report to Moderator Report to Moderator

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Wow!  Glad to see I'm not the only one into this on here!  Aussies too!  

cowgirl1988 - yep I think this can underly many syndromes.  My fibromyalgia/CFS is much quieter lately! I use Nature's own B3.  Also you get B3 in multi-bs.

I haven't had the test done, also $ problems, rather spend that on supplements and see their effect.  yep am taking 600mg magnesium a day (plus calcium separately) and much more.  When I added 6 caps of evening primrose oil as well as the 200mg b6, 25mg elemental zinc (plus manganese and biotin) now I feel good!  Also take Vit E, A and C and multi B (I'm low in A and I read that it can be a pyroluria effect from lack of taurine which lowers stomach acid (taurine is depleted by MSG and vitamin B5).

Like Isa pointed out, it is strange that nonnies seem to fit with this.

I'm interested in testing my DD, I'm so sure that I have it I barely feel a need to test.  Wouldn't want to overdose her in zinc when she doesn't need it.  Also don't know if she's a nonnie.



INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

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Curious
Tuesday, June 21, 2011, 12:30am Report to Moderator Report to Moderator

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I would be careful taking supplements for something you don't know whether you have got it. It can upset the balance in your body and you do more harm than good.

The test was not very expensive when I did it. You could save the money for the supplements if the test shows you that don't need them because you don't have pyroluria.
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NewHampshireGirl
Tuesday, June 21, 2011, 2:18am Report to Moderator Report to Moderator

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Quoted from Amazone I.
I observed the lack of B6,mg,zink is a typical nonnie issue ...but perhpas might lead to explorerdom as well ...  


That's pretty fascinating!  I have never heard of this disorder before.
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Symbi
Tuesday, June 21, 2011, 6:41am Report to Moderator Report to Moderator

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Quoted from BTypeAUS
Very interesting subject, my 12 year old autistic son had the urine pyroles test done and his is quite high, the dr has out him on a supplement of zinc and magnesium among other things ..the only problem is getting him to take it  


You could try liquid zinc (supposedly the best absorbed) on a spoon.  My little one takes medicine that way.  I'm not sure how I would get tablets into her, mortar and pestle and put in something sweet?


INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

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Symbi
Tuesday, June 21, 2011, 12:28pm Report to Moderator Report to Moderator

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Good point Curious.  I'm also curious   to be sure and will get the test done one day.  I used to get white flecks on my nails (sign of zinc deficiency), forgetting my dreams (b6 deficiency), dry skin, mouth and sore cystic breasts (sign of GLA deficiency) so I'm pretty sure for now.  I don't think much harm can be done by B vitamins but minerals can be tricky to balance.  I'm low in iron too which doesn't totally fit pyroluria so I have to take iron away from the other minerals.  

Supporting what Isa was saying, I found some info in the D'adamo health protocols. Most of the protocols it says to use for 6 - 8 weeks though. Dr D recommends Zinc and vitamin A supplementation to all nonnies in his YEAST/FUNGUS RESISTANCE PROTOCOLS also in his ANTI-VIRAL PROTOCOLS.  5-HTP (5-hydroxytryptophan) for nonnies in his ANTI-STRESS PROTOCOLS which might indicate lack of B6 leading to serotonin deficiency.  He recommends zinc for all type A and ABs in the IMMUNE-ENHANCING PROTOCOLS.  Zinc for nonnies in the MALE HEALTH PROTOCOLS.  B6 (and vitamin A for nonnies) for all A and ABs in the MENOPAUSE SUPPORT PROTOCOLS.  Zinc pops up again for everyone (15mg) and Vitamin A for nonnies in the PULMONARY SUPPORT PROTOCOLS.  Vitamin A again for nonnies in the SINUS HEALTH PROTOCOLS.  and there are more.  
Also answers some of my questions why my blood was low in Vitamin A.  I'm a nonnie!  and Dr D is great to make sense of us.


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TJ
Wednesday, June 22, 2011, 12:46am Report to Moderator Report to Moderator

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I'm going to look into getting some GLA.  I'm pretty much convinced that I need to get my pyrroles checked too!  I'd like to find a ND to work with, though, rather than using a home test, that way I can get some interpretation.
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Symbi
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There are fatty acid profile tests that could give an idea too.  Apparently many pyrolurics (yuk name that!  ) would have high omega 3 and low omega 6.  Some say that we don't need omega 3 and others say we do. It's probably different for each individual and could change with histamine status and health problems (histapenics require more omega 3 to counteract inflammation).  I get histapenic sometimes with autoimmune flares so I eat fish a few times a week and take a daily dose of fish oil along with EPO (6 capsules every day) every 3 - 4 days to counteract inflammation.  At first I took 3 capsules EPO a day and a full dose of fish oil but it didn't feel right.  Still had low GLA symptoms.


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Symbi
Wednesday, June 22, 2011, 11:14pm Report to Moderator Report to Moderator

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Here's another thought about nonnies and Pyrroluria (sorry i probably have been spelling it wrong) / HPU / KPL / Malvaria, Pyrroluria, Mauve, HemoKryptoLactamUria / Mauve factor   .  Nonnies have lower amounts of intestinal alkaline phosphatase (see below).  Serum IAP is a magnesium and zinc dependent enzyme!  this links to some studies: http://www.musclechatroom.com/.....tase-zinc-deficiency
Also Zn and Mg deficiency is linked with hypothyroid problems.  Pyroluria is linked with hypothyroid as well.  I'm hoping to be checked for Hashimotos since my thyroid has played up before and my TSH is near 3 at the moment along with very high ANA so I'm autoimmune to something?

I'm not trying to say that all nonnies might have this, they may be susceptible to it and maybe it's bought on by heavy metal toxicity, mould, infections, drugs (including the pill) that alter P450 enzymes and hormones (progesterone during PMS time).  It must be a spectrum as well where some may have it just a bit.

Quoted Text
The activity of intestinal alkaline phosphatase and serum alkaline phosphatase is strongly correlated with ABH secretor phenotypes. Independent of ABO blood group, ABH non-secretors have lower alkaline phosphatase activity than ABH secretors. It has been estimated that the serum alkaline phosphatase activity of non-secretors is only about 20% of the activity in the secretor groups.


I'm hoping getting my amalgams removed will help!  Would have been good to have krytopyrrole test before and after really.  Had a pretty bad reaction a few days after the removal - numb lips and tingling down arms and really bad mood.  Taking chlorella to get it out of my system.  Feel lighter just one left to go.

The dutch HPU site is worth a read too.  http://www.hputest.nl/english.htm


INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

Family - O+ DH and DD (both hunter-ish)
IBS, Fibro, Hashimotos, Adenomyosis, Oral Lichen Planus, Breast Cancer, Terminal case of Optimism
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BTypeAUS
Thursday, June 23, 2011, 2:29am Report to Moderator Report to Moderator

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I recieved my sons supplements for pyrolle disorder yesterday ,,.the pharmacy that makes it is called Kingsway Pharmacy Compounding , they are based in Sydney their number is 1300 564 799

Email compounding@kingswaycompounding.com.au

Website www,kingswaycompounding.com.au

The product is called "primer pyrrole undermethylating" capsules ....my son wont swallow capsules so they sent me a masking liquid to mix each capsule with..he is taking two a day ....hope this helps and good luck!


B+ Nomad, mum to two type O+ boys (21 and 14) and husband type O+
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Melissa_J
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I'd recommend the specific test, but you can also test for a zinc deficiency with a zinc sulfate taste test, or product called Zinc Status... if you can't get the other tests, that could at least help you know if you are zinc deficient or not.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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TJ
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I think taking B6 and zinc in the morning has helped, but what I've really noticed is how good it is when I take them at lunch, too!
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Amazone I.
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all stuffs taken in orthomolecular amounts are helping out of the situation much quicker ....btw... there are some good advices while googling under the aspect of *orthomolecular psychatry ...


MIfHI K-174
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