When I found out I was pyroluric the doctor I had was very interested in this problem. He had his own practice at the time but had worked at the Princeton bio-center before going into practice on his own and knew alot about pyroluria. You might say it was his thing. He told me it can lower Gaba in the brain which can cause seizers. It causes long eye brows. Have you seen people who have that, some of the eye brows are longer than others and they hang down.Red dots on your torso they look like little spots of blood. That's the neurotransmitter problem.Mortons toe,toe next to big toe is longer than big toe ,this means you can't convert pyrodoxine into pyrodoxine 5 phosphate. You would need p5p.Little bumps on the back of arms, this is a fatty acid deficency from the low b6. Cavities in teeth from to much acid in system from low b6.I found out from researching this that pyroluria is the reason for my panic attacks. They went away with the bcomplex. Low zinc can cause eating disorders.Pyroluria causes low zinc so you can't get rid of copper . High copper can effect your thyroid and has been mistaken for Graves disease.This can cause adrenal problems and adrenal problems can cause gloucoma my sister has it she also has scoliosis which is another problem pyroluria causes. My other sister has bad streth marks and the crowded teeth. All 4 of us kids had trouble with teeth from the high acid. My brother has bad arthritis which they say can be from high acid. The cancer thing from high acid scares me.I have a first cousin who was born with the hearing problems it can cause.We have alot of Knee problems in the family.It causes a problem with the cartilage in knees. Mine used to go off track before treatment. I do every thing I can think of to be alkaline but it's not easy this is why I stay away from eating meat. I also need a lot of minerals. The body uses it to buffer the acid. I get very light headed in the sun and sometimes feel like I am going to pass out. I take liquid ionic mineralsand that really helps . I carry it with me always. Magnesium is very important for pyrolurics. You need alot and you also need extra because of the exta b6 you take they work together. I found though blood work that the whole food works better than the citrate for me.So many things to deal with ,with this. I'm doing so much better now with the b complex a.m and noon and zinc before bed. If you take it together it forms a compound and deletes each other .When I took them together I broke out in hives from the sun. I couldn't even drive my car without something covering my arm to protect it from the sun. The doctor got upset with me because I didn't listen when he said"bcomplex with breakfast and lunch zinc before bed".!!!"Well just thought I would share what I have learned.Please share with me, Thanks
It is so important and you have so many great observations explained.
It is by posting individual results that we can all form a collective memory data bank and get closer to find what works to get the results we want without going on the Rx track - and take care of ourselves naturally and with more autonomy.
Each post holds many clues, and each clue helps many.
After much study, I believe that Pyroluria is an infection, most likely fungal in nature. Genetic conditions do not respond to natural foods whereas you can gradually reverse Pyroluria by these means.
What do you mean by a "whole food" form of zinc. Something like what Standard Process sells?
I was thinking of taking Zinc Picolinate made by a quality brand.
In regard to the last person's comment, some people, like Dr. Klinghardt, have suggested that infections such as Lyme Disease induce the condition by altering the heme molecule. Lyme of course is a bacteria.
Mike and others re: pyroluria,
I had the test at http://www.pyroluriatesting.com
in November and was amazed that it was negative.
I have every single symptoms. Literally.
I have the red dots, the longer toe, scoliosis, have always been hyper etc etc.
I may not be converting things correctly, and I have become more seriously ill in past 1.5 yrs after a flu.
I have still not recovered and have serious GI problems and become sort of 'allergic' to all foods.
I am looking at all angles, from home toxicity, heavy metals, lyme etc. But I had this stuff before I ever moved into my current home, as a child too.
Long story short. Are there specific genetic tests for some of these problems of not converting some enzymes or missing co factors or lack of ability to convert p5p?
If there is a chance of the test being a false negative please please people tell me more about this. I have every single symptom, it seems odd that I didn't have pyroluria, plus there is history of alcoholism and anxiety type problems in my family history affecting many members.
All help appreciated and proper testing, not only of pyroluria but any tests like genetic type tests that might explain the lack of conversion or missing enzymes or similar. Thank you all so much.
In his book "HPU and then..?" Dr. Kamsteeg writes: "It is important to not use vitamin B6,
biotin, multivitamins, pyridoxal-5-phospahe or zinc in the
week prior to the urine collection. In case of long-term use
of 50mg or more of vitamin B6 per day, the test may turn out
to be ‘false-negative’. This means that the result of the test is
‘negative’, while under normal conditions you would have had
a positive result. Also after a period of relaxation, i.e. after a
vacation or sickbed it is better not to send the test, because the value will then be much lower." "When
you’ve urinated a lot in the night prior to the test, then
select another day. If you have to urinate in the night after 4
AM (with a normal night’s rest), consider this urine then as
morning urine. If you drink a lot of water, do not drink extra
water the day before the test. Also do not drink large amounts
of alcoholic drinks the day prior to the urine collection.
It is best not to send in urine the first days after the
menstruation, because the values are a lot lower then than
"The test (HPU) is completely reliable, subject to the condition that it
is performed under the right circumstances. There are some
factors that can influence the test results. There is a group of so-called ‘evening-excreters’.
In most people, most of the HPL-complex is excreted
in the first morning urine (see fi gure 1a). In them the
HPL-complex accumulates in the urine during the night.
Normally we notice a decrease after in the curve after an
initial value of 1,2 μmol/l in the morning urine. It is even
possibly that by noon, nothing can be detected in the
urine anymore. After this the value increases again in the
afternoon to end in the evening at a relatively high value.
The following morning we’ll then detect the highest value of
the day again.
This image is different in chronically ill people (see figure 1b). These people are not able to temporarily accumulate
HPL- or it’s precursor, (hydroxy) hemopyrrol, because their
tissues are apparently too contaminated with porfyrins and
other pyrroles, and subsequently excrete these directly.
These are the so-called ‘evening-excreters’. In these people
there is a peak within a few hours after the evening meal.
They excrete relatively few in the morning and have the
highest value in the evening urine, two hours after the
hot meal. Evening-excreters often have a high score on
the HPU-questionnaire, but a surprisingly low value in
a normal HPU-test®. This problem can be overcome by
collecting the urine during 24 hours, or by taking a sample
of the urine collected after the evening meal up to and
including the morning urine. The people that primarily
excrete in the evening or during the day are generally very
ill and suffer of chronic fatigue. In people with an elevated excretion fatigue is a frequent problem. Nine out of ten
indicated that they suffer of regular fatigue.
Until now nobody has been found with the excretion
of a hexa- or hepta-HPL-complex. With however tetrapyrroles,
and that is strange. These are also people that
have a low score on the urine test, but have a high score
on the HPU-questionnaire. For this group a simple trick
can be used: freezing the urine for a short period. At a
certain temperature, the tetrapyrrol-complex disintegrates to monopyrroles. We subsequently do not measure the
HPL-complex then, but these monopyrroles and notice an
elevated value. This phenomenon probably rarely occurs.
Some illnesses and situations may lead to ‘false-positive’
The information and the HPU-questionnaire on Keacs pages on HPU(http://www.hputest.nl/english.htm) have been of very good help for me. You can without a problem send a test to them to see if it turns out different.