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Posted by: TJ, Sunday, June 19, 2011, 10:07pm
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???
Posted by: Symbi, Sunday, June 19, 2011, 11:43pm; Reply: 1
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  :P).  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.
Posted by: Curious, Sunday, June 19, 2011, 11:44pm; Reply: 2
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.
Posted by: brinyskysail, Sunday, June 19, 2011, 11:59pm; Reply: 3
I'd love to be tested for all kinds of things, but that involves $$$
Posted by: cowgirl1988, Monday, June 20, 2011, 12:09am; Reply: 4
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  :P).  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...

Posted by: TJ, Monday, June 20, 2011, 12:16am; Reply: 5
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.
Posted by: cowgirl1988, Monday, June 20, 2011, 12:24am; Reply: 6
I just scored a 15, without answering 2 of the questions....could this be what sets off symptoms of chronic fatigue syndrome too???
Posted by: brinyskysail, Monday, June 20, 2011, 12:24am; Reply: 7
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.
Posted by: Amazone I., Monday, June 20, 2011, 4:50am; Reply: 8
I observed the lack of B6,mg,zink is a typical nonnie issue ;) ;D...but perhpas might lead to explorerdom as well ;)...  :D
Posted by: BTypeAUS, Monday, June 20, 2011, 4:52am; Reply: 9
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  :-/
Posted by: BTypeAUS, Monday, June 20, 2011, 4:53am; Reply: 10
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?
Posted by: Lin, Monday, June 20, 2011, 1:17pm; Reply: 11
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.
Posted by: cowgirl1988, Monday, June 20, 2011, 9:35pm; Reply: 12
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  ;)
Posted by: Symbi, Monday, June 20, 2011, 11:18pm; Reply: 13
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.

Posted by: Curious, Tuesday, June 21, 2011, 12:30am; Reply: 14
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.
Posted by: NewHampshireGirl, Tuesday, June 21, 2011, 2:18am; Reply: 15
Quoted from Amazone I.
I observed the lack of B6,mg,zink is a typical nonnie issue ;) ;D...but perhpas might lead to explorerdom as well ;)...  :D


That's pretty fascinating!  I have never heard of this disorder before.
Posted by: Symbi, Tuesday, June 21, 2011, 6:41am; Reply: 16
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?
Posted by: Symbi, Tuesday, June 21, 2011, 12:28pm; Reply: 17
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.
Posted by: TJ, Wednesday, June 22, 2011, 12:46am; Reply: 18
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.
Posted by: Symbi, Wednesday, June 22, 2011, 11:01pm; Reply: 19
There are fatty acid profile tests that could give an idea too.  Apparently many pyrolurics (yuk name that!  :P) 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.
Posted by: Symbi, Wednesday, June 22, 2011, 11:14pm; Reply: 20
Here's another thought about nonnies and Pyrroluria (sorry i probably have been spelling it wrong) / HPU / KPL / Malvaria, Pyrroluria, Mauve, HemoKryptoLactamUria / Mauve factor   :B :o.  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/forum/showthread.php?1614-Low-serum-Alkaline-Phosphatase-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
Posted by: BTypeAUS, Thursday, June 23, 2011, 2:29am; Reply: 21
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!
Posted by: Melissa_J, Thursday, June 23, 2011, 4:25am; Reply: 22
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.
Posted by: TJ, Saturday, June 25, 2011, 4:18pm; Reply: 23
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!
Posted by: Amazone I., Saturday, June 25, 2011, 4:47pm; Reply: 24
all stuffs taken in orthomolecular amounts are helping out of the situation much quicker ;) ;D....btw... there are some good advices while googling under the aspect of *orthomolecular psychatry :D...(clap)(ok)(smarty)
Posted by: Symbi, Monday, June 27, 2011, 12:06am; Reply: 25
Thanks BTypeAus - very helpful!
Glad you're feeling good TJ!  Me too.  Met my friend who put me onto this yesterday and gave her a big thanks cos I'm so much better mentally lately.  She's a vegan on ethical grounds, so it's even harder for her (probably the phytates in grains would lower her zinc even more I think).  Lovely lady and I can't argue with her but hope she's getting enough B12 and other goodies we all get from animal products.

Good point Melissa J been meaning to try the zinc taste test.  One think I noticed since taking zinc my sense of smell and taste has been consistent, used to disappear at times before!
Posted by: Niagreen, Saturday, July 9, 2011, 9:21pm; Reply: 26
I came across this information when researching b6 deficiency (and detoxification) because my mouth and skin are burning burning all over and I want to remedy it. It might explain some things for us Symbi  :)

'If your body has a Vitamin B6 deficiency, as in the condition " Pyroluria " then your liver will be unable to convert homocysteine into cysteine, and therefore you will be lacking the precursor to many essential molecules such as Glutathione, Metallothionein, Taurine, and other sulfate compounds which chelate heavy metals out of the body, and help to repair our intestinal lining.

If you have a certain kind of genetic disorder which prevents you from being able to convert Pyridoxine into P5P (pyridoxal-5-phosphate), then you are even more likely to suffer from the health consequences of heavy metal toxicity and the presence of xeno-estrogens and numerous other environmental toxins. You should therefore take nutritional supplements which contain the P5P activated form of B6 and not the Pyridoxine form.

If you have pyroluria, than you are much more likely to have autism, mood disorders such as Bipolar, anxiety, depression, schizophrenia, addictions such as alcoholism, as well as menstrual disorders such as PMS, dysmenorrhea, and migraine headaches, since the lack of Zinc and Vitamin B6 will directly result in a buildup of Copper toxicity in the Liver and brain, as well as a decreased ability to detoxify Mercury, Lead, Arsenic, Aluminum, and Cadmium, which can all degenerate brain tissues, resulting in neuronal cell death, giving rise to poor memory, and eventually Alzheimer's or Autism can result from an excess of these toxic metals building up in the brain tissues.

At the same time, Vitamin B6 and Zinc are necessary for the enzymes which create the neurotransmitters Serotonin, Dopamine, Melatonin, and GABA, and so the constant leaching of B6 and Zinc into the urine will result in mood swings, anxiety, panic disorders, rage disorders, addictive tendencies, insomnia, and ADD.

By supplementing with adequate amounts of Zinc and P5P form of Vitamin B6, you can help to reverse the dangerous effects of this common disorder.'


Posted by: TJ, Saturday, July 9, 2011, 11:26pm; Reply: 27
Interesting, Niagreen.  Thanks for sharing.
Posted by: Symbi, Saturday, July 9, 2011, 11:58pm; Reply: 28
Tick tick tick most of those boxes - good info Naigreen thanks!  Where did that come from? - I am saving lots of info about this on my harddrive - I'm not sure why - as if I'm going to write a book !  If you research some say it's a lack of B3 as well or the lack of GLA and AA (omega 6 fats) all play a part I guess.

I've been taking zinc now for so long I need to take copper as well.  If I don't I get too much histamine and symptoms like tendonitis flares.  Once you start correcting there's some fine tuning required.  Taking chlorella at the moment after having my amalgam fillings removed and I think it draws all metals from the body so I probably need the good ones even more at the moment.  

B6 works for me - my PMS is much better lately. I'm taking 250mg spread out over with each meal and 25mg is with my magnesium tablet before bed.  The steadiest I've ever been mentally  :)

The supplements for PMS usually have Zinc, B6 and magnesium.  No wonder.
Posted by: Niagreen, Sunday, July 10, 2011, 9:15am; Reply: 29
I read this thread when it first started.. I had no idea that I myself was a candidate for pyroluria until I went hunting for b6 supplements online - I am pretty sure I have high copper and low zinc, magnesium and B6. I have had high homeocysteine for years and years and my kinesiologist was always baffled as to why my body was in a constant need for high folate,B6 and B12. I was popping 5000mcg a day of B12 for years and nothing I did seemed to stop my need for it. Apparantly if there is inadequate B6 it stops the body from being able to utilise B12.
Finally, after a lot of hunting I feel like I'm getting somewhere. I am believing that my incessant chest pain and burning skin will be helped once I start up the B6 and B complex. I have some zinc tablets and take 15mg a day. I tried to up to 30mg but i think it speeds up chelation too much as I get very nauseus.

here is the link symbi : http://www.holistic-back-relief.com/vitamin-b6-benefits.html

there is some information on zinc and mercury there too.

I really do believe that mercury is a silent epidemic. SO many people are affected in my opinion. Lots of dentists that remove the fillings won't let you take them home because they must dispose of the 'highly toxic material' properly, but it's ok to put it in our mouths!

Any excuse for this is probably that certain genetic factors (like pyroluria) can inhibit the body's ability to detox the metals from our system... maybe being a non- secretor too. Mark Hyman said something about GSTM1 which is another genetic characteristic which impinges on the glutathione pathway. Also sounds very Explorer to me! oh mama, we sure have it tough sometimes.

It's only since I've told my best friend (a chemistry graduate) about my mercury toxicity that she has finally begun to completely understand what I am going through. Yesterday she said to me 'I know you've had this problem for ten years now, but to be honest, from my scientific perspective and what I have studied in my 'metals and molecules' module I am surprised you are still functioning as you are.' - I hope not too much brain damage has been done to me. At the moment I think the worse is the muscles and joints.. and my skin. But hopefully once I get the B6, zinc and magnesium combo going my already hugely taxed liver will be given a much neede boost.

I am so happy you were able to get your amalgams out symbi. speeding healing to us all  :)
I take spirulina which is similar to chlorella and it is very good for us  :)

before you took B6 did you have any cardiovascular problems, or swelling edema ? burning sensations?
Posted by: Niagreen, Sunday, July 10, 2011, 9:29am; Reply: 30
also, B6 is needed for adequate hydrocholoric acid production. I'm not sure if this is a problem for you guys but I thought it was very interesting as I have hypochlorhydria, lack of stomach acid production.
Posted by: JJR, Sunday, July 10, 2011, 3:42pm; Reply: 31
I'm not sure why the dentists think mercury is OK in your mouth either.  Or in shots.  

You're young, you'll bounce back.  Praise God for you discoveries!!!!!  But I know what it's like to feel awful because of these problems and not have people understand.  So it's great that your practitioner is getting a picture.  

You can supplement glutathione.  You probably know that.

I'm supposed to be taking a b complex also.  I didn't know it's needed to absorb b12.  Interesting!!!
Posted by: Symbi, Monday, July 11, 2011, 2:08am; Reply: 32
:) Niagreen, thanks so much!

Notice the link to niacin B3.  Lack of B6 reduces trypophan conversion to B3.  Low B3 produces anxiety - something I've suffered from for so long.  Double sucker punch with low serotonin - depression and all the other effects.  I used to have insomnia (fibro too) and not remember my dreams at all (now I do and that's like a therapy to me - a way for the subconscious to send messages I humbly believe).  Is a good way to see if you're getting some B6 now.  Gee I didn't know B6 helps convert Tyrosine into Dopamine.  Yikes!

To increase glutathione: Whey protein powder is great for us A explorers it contains cysteine, I try to have 2 tablespoons a day usually with cereal in am or with yogurt sometime.   Apparently milk thistle also increases glutathione I take some often.  Have read that glutathione supplements may not work as well.

Also suffer low stomach acid - though I had boughts of high stomach acid when I ate too many acidic foods for a while and got GERD with ulceration which I was able to clear up through diet and medication for a short while (yuk - indigestion worse).  Get some reflux and indigestion still mildly infrequently.  Generally digestion works better than ever.  

I think I still get B6 deficiency boughts when I have autoimmune flares and probably my liver gives in at that time.  I get cracks on the side of my mouth, fibro pain, inflammation including tendonitis swelling.  Even with the B6 I get water retention around PMS time though it varies.  P-5-P would be good at these times I must look for some.  Nerve pain is another symptom - burning in forearms hardly able to open hands.  :(

I've read that pyrrolurics are often low in taurine (see methylation cycle pic produced from cysteine).  That has mental and other effects (yikes my DD had fetal distress and is being checked for aspergers wish I knew this years ago!  See it also says MSG lowers taurine - no wonder it's an avoid probably Dr D is right onto this)

http://bodyecology.com/articles/deficient_in_taurine.php.  

http://bodyecology.com/articles/deficient_in_taurine_part2.php

Biotin is also dependant on cysteine.  
"Anemia can occur as a result from a deficiency in biotin. Biotin is necessary for the synthesis and utilization of two important B-vitamins, folic acid and vitamin B12 that are needed for healthy red blood cells." http://www.3fatchicks.com/symptoms-of-a-biotin-deficiency/  
Another points out link with fungal diseases: http://www.quality-nutritional-supplements.com/biotin.html
I've been supplementing extra biotin and feel more stronger, more energy (it's also found in B comples).  What do you know?  I can eat some sugar accidentally and don't get a yeast infection straight away anymore!  :o  Another Explorer tendency - yeast infections.

Maybe it's all G6PD deficiency by another name http://g6pddeficiency.org/index.php?cmd=forumviewmsg&id=5030 - something explorers are prone to.  A rose by any other name.. perhaps.

http://www.glutathionediseasecure.com/vitamin-B6.html some more info - B6 helps with morning sickness like ginger - wondered by not eating in am was listed in pyrroluria symptoms.  I had it bad during pregnancy and ginger did help.  Used to not like to eat breakfast before too.
It also says "The intake of vitamin this B vitamin, from either diet or supplements, could cut the risk of Parkinson’s disease by half according to a prospective study from the Netherlands."  cool (cool)

Sorry if tmi!  That diagram of the methylation pathway got me excited - though I'm just a beginner it's all fascinating :)
Posted by: JJR, Monday, July 11, 2011, 2:40am; Reply: 33
Donna suggests eating eggs cooked over easy because supposedly the biotin in the yolk is left intact.  But if you cook the yolk, I guess it's not as prevalent.  According to her.  I have no clue, but I do eat my eggs over easy a LOT.
Posted by: Symbi, Tuesday, July 12, 2011, 12:52am; Reply: 34
Thanks for that JJR I like mine half cooked with some runniness still intact - tricky!  Yolk is nice to soak up with some spelt bread YUM!
Posted by: TJ, Tuesday, July 12, 2011, 1:32am; Reply: 35
I got my P5P in the mail today! (woot)
Posted by: Niagreen, Tuesday, July 12, 2011, 10:22am; Reply: 36
yes symbi this is so interesting for me too, i get really quite excited when I find out why i have been feeling a certain way. That link about G6pdd is just me all over! I think I inherited something from my dad's side as he has liver cirrhosis (but not from being obese or a drinker, took a lot of medications I think) as my step sister has a form of autism I have heard. Definitely a genetic link that I need to work on there.

I was so pumped to try whey protein powder but it is an avoid on my Swami, so I've settled for milk thistle, NAC and the odd glutathione supplement, plus lots of avocado. (it's a bit annoying that glutathione doesn't really work isnt it!) apparantly from a chemistry perspective this is normal though  :-/ to have to pave the pathway to boost the production rather than put the material straight in the body   :)

After coming to terms with my explorerness and really playing around with my swami (i was flittering between teacher and explorer) I've realised that such a long time of previously being an almost vegan starchitarian has probably made me very protein and vitamin B deficient, especially with all the mercury and homeocysteine I need to reduce. My homeopath said at the weekend that i need to up my tyrosine.

it's not tmi at all! I get so excited about these things too!

jj, thats great to know about the eggs. I need to do them over easy! I have a habit of cooking the life out of them. Have never cooked myself a runny egg! but I have been having quinoa/buckwheat pancakes every morning with one egg for the lecithin and liver boosting properties.

tj, I just got my P5P and B complex plus in the mail too! how much are you taking of the P5P? each capsule of mine is 50mg

I do praise this discovery  :) hopefully now I will grow a new head of hair  8)
Posted by: JJR, Tuesday, July 12, 2011, 5:13pm; Reply: 37
I don't dip anything in my yolks, just let them roll down, oh so smooth.  Mmmmmm..   8) ;D ;)

What is p5p?

Niagreen.  For what it's worth, according to Dr.D and all these new things they're learning, with the right diet, lifestyle, etc etc, we can actually turn off these bad genes.  How exactly you do that, I'm not sure, but I think it's what everyone is all excited about.  I think at times in my life, the conditions were right that I turned off the bad genes and had a lot of good genes turned on.  Now, I need to get back to that.  Because I think for a plethora of reasons, it's the opposite.  Or somewhat that way.  
Posted by: TJ, Wednesday, July 13, 2011, 1:24am; Reply: 38
P5P is the active form of vitamin B6.
Posted by: Symbi, Thursday, July 14, 2011, 4:44am; Reply: 39
:) hope it works well TJ and Niagreen.

Niagreen - did you look up high homocysteine levels (now I have too cos my new doctors is going to test them along with all the thyroid including antibodies she says I'm hypothyroid! TSH last was 2.6 and had high ANA a long time but never been tested on THOSE antibodies!)  hopes are high!  She's also testing all my hormones but that's for another thread.  I think she's testing my homocysteine cos my dad had a young heart attack and my cholesterol was highish last year before SWAMI  ;).

Back to it - there's a genetic mutation called MTHFR worth looking up that causes homocysteine to build up in the body.  There are also other reasons - high oestrogen and low thyroid being two that I can relate to.  When it's high the need for more vitamin Bs (incl B6, folic acid, B12) goes sky high.

Hope that helps - worth reading up on.
Posted by: JJR, Thursday, July 14, 2011, 4:27pm; Reply: 40
That reminds me.  I think I'll introduce my b6 complex today.  Thanks for the reminder!!
Posted by: Niagreen, Thursday, July 14, 2011, 5:41pm; Reply: 41
I'm taking 2 b complex capsules a day, comprising of a total of 200mg B1, 30mg B2, 220 mg niacin (b3), 40mg b6, 800 mcg Folate (b9), 800 mcg biotin, 200mg panthothenic acid (b5)

on top of this im taking one 50mg p5p

Symbi - I have looked up high homocysteine in the past. I have a feeling that too is also related to mercury. Protein grabbing evils who rob all the sulfur from the cells and robs the body of cell rebuilding and key enzymes for detoxification.

I had high homocysteine from the age of 11 (is it possible to get cardiovascular problems at that age?!) I just saw something about MTHFR - interesting! ah!

I've had a few thyroid tests in the past. My TSH according to blood tests has been about 1.04, sometimes going up to 1.8, but my problem is that I have really low T3. Apparantly my conversion of T4 to T3 is really weak. (Probably a liver problem) I had a total thyroid hormone output in urine test and that showed signs of hypothyroidism - low on all thyroid hormones important for thyroid function. I was put on dessicated glandulars and I was expecting a miraculous recover but I actually got very ill. Maybe this is because I can't do the converting in my liver because I have so many toxins.

My cholesterol is around 173, blood albumin low.  I wish i could get lots of tests done but it is so expensive to do it with Genova Diagnostics. But now you mention high oestrogen and low thyroid... I have always had problems with menstruation )possibly high oestrogen!?) - and the only thing that got me going was natural progesterone cream. Probably not the most advisable at my age (eek!) but at the time nothing I was doing would give me a period!
Posted by: nowishow, Thursday, July 14, 2011, 9:21pm; Reply: 42
Quoted from Niagreen
I have always had problems with menstruation )possibly high oestrogen!?) - and the only thing that got me going was natural progesterone cream. Probably not the most advisable at my age (eek!) but at the time nothing I was doing would give me a period!


Looking back I wish I had taken progesterone cream when I was your age. I showed all the signs of having too much estrogen. I ended up with endometreosis and had a hysterectomy at the age of 29. So I think if the progesterone seems to work for you, stick with it.  :)

I'm also taking P5P, zinc and magnesium (both topical and internally). The zinc and P5P really made a difference for me. I'm being treated for Lyme disease (and coinfections).
Posted by: maukik, Thursday, July 14, 2011, 10:40pm; Reply: 43
Quoted from Niagreen
but my problem is that I have really low T3. Apparantly my conversion of T4 to T3 is really weak. (Probably a liver problem) I had a total thyroid hormone output in urine test and that showed signs of hypothyroidism - low on all thyroid hormones important for thyroid function. I was put on dessicated glandulars and I was expecting a miraculous recover but I actually got very ill.


Have you heard of or tried Cytomel?  It is T3. My doctor prescribed it and I really like it.  

Posted by: honeybee, Thursday, July 14, 2011, 10:49pm; Reply: 44
Another interesting thread to watch  ;D

I answered yes to 15 of those Q's too...

Starting back on my chlorella and spirulina stash this week, my ma did not like me taking it while in pain from a cyst - she would accuse the supps for making things worse, but no way am I going to throw a premium supply of super greens away, they were exxy too.

Feeling good; hopeful of less cravings, more chelation and energy!  (spirulina super foods on my SWAMI.)
Posted by: Symbi, Thursday, July 14, 2011, 11:41pm; Reply: 45
Remember I'm not a dr or naturopath and I'm just sharing what's working for me and information I found.  Getting worried I don't want to lead anyone down the wrong path!

Glad you're recovering nowishow. :)

Niagreen, sorry you don't get whey but you got glutathione covered ! 47% explorer is pretty high so remember these three things: detox detox detox   ;).  You're probably right about evil mercury sending homocysteine up.  I read, though, that children have high levels naturally.  Sounds like you've got good b complex there  :)  Hopefully you remember your dreams on that (or at least that you did dream), or you may need more B6 or P-5-P.
What about adding evening primrose oil or borage oil as well (http://www.dr-bob.org/babble/alter/20040901/msgs/386934.html).  When I added that was a huge change but maybe everyone's different on that.  Pyroluria increases the need for it.  I also take fish oil every 3 days or so.  My breast tenderness is nearly non-existant on 6 tablets of EPO a day (2 with every meal).  PMS is much better and steady mentally.  Apparently it reduces the body reaction to excess prolactin among many other things.

You must have tried vitex before to balance hormones?  My new doctor said once we find out my hormone levels she will prescribe some and maybe some other herbs to shrink my endometriomas (though I have adenomyosis she says it's the same thing in a different location).  She said progesterone may help my symptoms too but not solve all my problems.  ??) I guess we'll see.

Hi Honeybee!  I'm on chlorella too and it makes me feel all fresh and new! (helping me chelate mercury - also drink dandelion tea, eating lots protein, whey powder and milk thistle).  Mum was right - greens are good for us!  I read that chlorophyl is very similar to our haemoglobulin which can be deficient in pyroluria.

Just found a good article from Nexus magazine about Porphyria (pyroluria is probably a subset) http://truemedicine.com.au/wp-content/uploads/1801porphyria.pdf
Posted by: Niagreen, Saturday, July 16, 2011, 11:47pm; Reply: 46
now that I am learning more about lyme disease i have thought about whether i should get tested, but they don't have that sort of health care system here. I don't really know where to go to get help for myself medically.

I have heard of cytomel Mauk  :) and also that it helps many people who cannot do the conversion... but I don't know how to get hold of it  :-/

thyroid issues do concern me now - from taking dessicated thyroid last year I seem to have acquired long term chest pain/heart thumping. I have no idea why this is. I went to the emergency room after passing out (having not slept for about 3 weeks) and there was nothing wrong with my cardio reports. The pain has remained even this far down the line. I think thats why I know I should take tyrosine supplements but I am scared to do anymore tampering. There is this sort of flutter in my thyroid sometimes, and usually i have a very high pitched/childlike voice but I seem to have gotten husky. Sometimes it feels swollen and throbbing pains occur. gah.


symbi - this sounds strange but I love having my period! it is the favourite time for me. I used to get migraines before i came on (every 3 months/5 months/ 8 months depending) and then I read i could be magnesium deficient so I started mass consuming magnesium capsules and this really helped. My flow is too light, and sometimes I am 'on' but with no blood (possibly due to anemia) but any period is good enough for me this far down the line.  :) haha, it is a really big celebratory event in my house - i shout it from the rooftops!

I have never tried vitex. I am starting to think my doctor is useless in comparison to many because after being hospitalised for infectious diseases I was discharged in 2003 with 'chronic fatigue syndrome' and its possible that since being labelled that way i've kind of been struck off and expected to just live this way. In the eyes of my homeopath though, I have ongoing cells memory associated with malaria, mercury, thyroid and hepatitis B. Cool  8)

ps. that article is AMAZING! I've saved it on my computer and I'm going to study it so I understand it properly, but from a glance of the whole thing.. spot on mate  ;)
Posted by: Niagreen, Saturday, July 16, 2011, 11:55pm; Reply: 47
I've contacted someone here in the UK who does blood-type diet associated consultations. She tests for pyroluria too. This will be interesting...
Posted by: Symbi, Sunday, July 17, 2011, 2:38am; Reply: 48
Good stuff Niagreen - hope you can keep us informed.  I'm going off Evening primrose oil in preparation for hormone test at the end of the week (apparently EPO lowers prolactin and may increase progesterone) so expect sore lumpy breasts any day now.  

Glad you're on magnesium, hope it stopped the heart feelings has helped me alot too - I don't get migraines any more and alot less tension headaches also less orthostatic orthotension.  1 thing I read - don't take it while you're having a headache cos it works as a calcium channel blocker which can make the pain worse, use it a prophylactic to prevent them. Most headaches are in the morning so I take mine with supper and before bed.

Can't believe you like your period - that's great though.  :)  I'm sure you'll solve your CFS with this WOL, experimenting and curious mind.  Coenzyme Q10 is helping me energy wise at the mo - worth a try.
Posted by: Symbi, Tuesday, August 2, 2011, 3:22am; Reply: 49
Ahhr what did I say about no migraines?  Got a doozy 2 days into menstruation, with aura seeing flashing lights and big pupils to start with.  Figure it was withdrawal from the most excellent Coenzyme Q10 I took for a month with no headaches along with hormones.  Highly recommended!

Back on EPO again thank goodness, didn't enjoy the dry mouth, skin and joints, large lumpy breasts off of it.  Test showed prolactin near top of the range which EPO helps lower.  Dr said I could still be making breast milk after 3 years! Other hormones were good.  

More relevant to pyroluria - it showed average homocysteine levels.  Homocysteine is lowered by B12, folate and P-5-P.  So I must be taking enough B6 and converting it.  Yay!  We tested that cos my Dad died in his 50s during 2008 of heart attack - think he as a nonnie warrior  :'(.

Hypothyroid
-------------

Also showed I have antibodies to my thyroid but not hashimotos yet!! (have never tested TSH over 4 - in Australia the range goes up to 5 before you're considered hypothyroid  ::) should be like 2.5).  Something I read is common with pyroluria, bipolar and gluten intolerance (we know probably nonnie hood too): http://braintalkcommunities.org/forums/archive/index.php/t-15783.html  

Note that many of the nutrients for pyroluria are good for thyroid.  See this thread Could KPU and hypothyroidism type 2 be the same thing ... related to poor recovery from Lyme? http://freeideasblog.blogspot.com/2011/07/could-kpu-and-hypothyroidism-type-2-be.html :

Quoted Text
"The minerals required to metabolize insulin are also used to metabolize thyroid hormone properly: Selenium, zinc, Vitamin E, B6, Manganese.

Sounds like what people take for KPU, she said. Yes!

With Type 2 Hypothyroidism, the thyroid gland produces "normal" amounts of hormone, but the cells are unable to utilize the hormone properly. Some experts call this thyroid hormone resistance (which may be regarded as similar to insulin resistance).


Type 2 hypothyroidism can be associated with:
-autoimmune disorders
-blood sugar disorders
-TMJ
-fatigue
-chronic Candida
-depression and mental illness
-carpal tunnel
-tinnitus"


tick tick tick for me there  BTW thyroid problem explains alot to me that I may have been hypothyroid during my pregnancy and may be why I got preeclampsia, HELLP syndrome and poor bub was born low birthweight and even with a nearly cleft palate and behaviour problems. :(  I had undiagnosed adrenal and thyroid symptoms from 2003 when I was on Depo Provera (don't get me started).  So much better these days.  :)

Am taking selenium now too and that feels good like a clean antioxidant, probably help with any autoimmune problem (ANA was very high last count).  Studies have shown it lowers antithyroid antibodies.  It is used to make T3 from T4 (my reverse T3 was a bit high but other readings were good).  Also the week before my test I did go off diet a bit due to being too busy might explain the antibodies cos I had some wheat.  Had swollen eyes and tight throat too.  (naughty)  Bet next test with be 0.

Vitamin B6
-------------

Check this excellent thread on B6  http://neurotalk.psychcentral.com/thread30724.html

Interesting how it links intestinal alkaline phosphitase is need for B6 conversion to P-5-P (also magnesium and B2).  Also that Zinc and B6 are dependent on each other.  Also that autistics have high blood levels of total B6 but low levels of the active form so they are less able to convert it.  (We enlightened know probably cos they are often non-secretors with less IAP?)  Taking more B6 can increase the active form.  I speculate and am probably going beyond my education level with alot of this! Haven't had time to read all of the above in detail yet either.  Yikes!  
Posted by: Symbi, Tuesday, August 2, 2011, 3:34am; Reply: 50
OMG how could I forget to say:

Knowing that I have inactive Hashimotos and many other things (won't bore you there!) how sick could I be if it wasn't for this WOL.  I've been getting better all the time, losing weight slowly since 2007 (went from 78kg down to 63) and being much more healthy - thank you to Dr D and my friends on here.   :K)
Posted by: Symbi, Sunday, August 7, 2011, 3:00am; Reply: 51
Where to get the test in QLD, Australia:

SAFE Analytical Laboratories
PO Box 2060
BURLEIGH JUNCTION QLD 4220
PH: (07) 5522 1919  Fax: (07) 5522 1929
Email: admin@safelabs.com.au

Cost: $40 for collection + $80 laboratory fee ($65 concession)

Collection is through Sullivan Nicolaides Pathology at one of their special collection offices, (my nearest is Taringa) by appointment.  They charge $40 for collection paid upfront, including dry ice, vitamin c preservative and dark room collection.  (Difficult if you're afraid of voiding in the dark  8) :o  :P but by now I think I got it figured  ;))

Payment to go with specimen and referral which has payment options on it credit card, cheque, money order.

Apparently they use the HPL method favoured by Biobalance - http://www.biobalance.org.au/ good place for info and lists of doctors.
Posted by: Niagreen, Sunday, August 7, 2011, 2:08pm; Reply: 52
Symbi, I'm getting tested this week :) I got sent the urine bottle and vitamin c preservative and I'm very excited about it  :)

been off of B6/zinc/magnesium for a week now to make sure I test accurate.
Posted by: Symbi, Monday, August 8, 2011, 12:37am; Reply: 53
(clap) :)(sunny)

Try to keep it in the dark (but do tell us about it!  ;)). May need to urinate in a darkroom and put aluminium foil on the container straight away, preservative then freeze.
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