Hi,

I had pyroluria tests with Bio-Center lab. My test came back "16", a borderline pyroluric. My son test came back as "28" on the pyrrole test, he has pyroluria.

I currently take b6 and zinc and it has been like night and day for me. Before I took those supplements I had CFS, aching joints, and very severe deppression. Those are general symptoms of an adult with pyroluria. I no longer have any of these symptoms.

A child with pyroluria (boys) can have symptoms of ADHD. My son does well with his work at school, but he does have problems with impulse control.

My son takes yummi bears child bright. They are vitamins to improve attention span. I bought this vitamin because it has b6 and zinc. He did really well on them at first, but we have hit a plateau. I have been hesitant to give him higher doses but now the tests have come back, he is going to need a higher dosage, but I would rather do it with a physician.

Does anyone have a child with pyroluria that has a physician that works with them? I am curious if physicians (MD) are willing to work with pyroluria.

Thank you

re: last sentence

I guess you'd have to ask a physician. I trained as an RN and have not heard of this condition.

When I look it up, it looks like a blood or endocrine or metabolic disorder. (e.g. a variant of porphyria)

I see mention of it being a "controversial condition".

What do the doctor's you've talked to say about this so far WRT (with regard to) ADD/ADHD?

NB I see some reference to it as a cause of "schizophrenic porphyria". Do you know that Stimulants are Psychotogenic? This COULD rule out Stimulant prescribing. (Not a doctor, though.)

http://en.wikipedia.org/wiki/Pyroluria

NB The Journal titles in the Reference section are NOT reputable science or health sciences journals.

'Orthomolecular' and 'Megavitamin' stuff is a red flag too.

A lot of these websites listed end in ".COM" (e.g. "doctoryourself.com", "nutritional healing.com". Do you understand that these are NOT academic or science websites? The word "dot com" in a Web Address means "COMmercial/business/for Profit" website. (e.g. someone who wants to $ell you $omething.)

Anyone can publish anything they want on a .COM website.

------------

Try asking your Question here?

http://www.quackwatch.org/04ConsumerEducation/QA/qa.html

Based on what little info I can find, pyroluria is a creation of the orthomolecular medicine proponents from the 1950's Ortomolecular therapies have been highly criticized and largely discredited over the years.

If you are not in the care of a licensed medical professional for this you might wish to see a licensed medical doctor about your symptoms and diagnosis.

ME :D

Yeah. The word Orthomolecular perked my ears up. (I was familiar with it in relation to "orthomolecular psychiatry".)

Psychotogenic?

I love some of the words you use

Hi Brskac.

I have Pyroluria myself and suffer from mental problems.How long did it take for you to beat the symptoms?

Greetz

Ray

P.S.:I wrote you a private message;)

Here is a bit of info I found on the clinical answers web site.


Interpretation:
Initital question: 48 year old patient with chronic depression also has a son with Attention deficit disorder. The patient has heard about pyroluria and sent me information from the internet about this condition which indicates that it is linked with both depression and ADHD. What is the evidence that this condition a) exists as a clinical entitiy and b) is linked with mental health problems. If so what is the treatment.
Answer:
We did a search of our usual sources (TRIP Database, Cochrane Library and Medline) and found very little information on pyroluria. If pyroluria is a condition it does not to have been accepted to any extent. As such there have been no obvious controlled trials with which to guide potential treatment.

Two records in Medline matched the term (out of over 14 million records), these were. The most recent was published in 1986 and the other, with no abstract was published in 1978 [2].

A search of NHS websites (using Google) found no records containing the term ‘pyroluria’.

A general search of Google finds a number of sites supporting the notion of pyroluria. For background you might be interested in the Wikipedia entry (http://en.wikipedia.org/wiki/Pyroluria). NOTE: Wikipedia is a collaborative online resource with many potential authors. This can have positive and negative implications. We recommend you treat wikipedia articles with an increased level of scepticism.

References

1) Heleniak EP et al. A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria. Med Hypotheses. 1986 Apr;19(4):333-8. (http://www.hubmed.org/display.cgi?issn=03069877&uids=3520252)
2) Cruz R et al. Pyroluria: a poor marker in chronic schizophrenia. Am J Psychiatry. 1978 Oct;135(10):1239-40.

I have talked with a bunch of people over the internet who have pyroluria and suffered from mental problems.Those people are cured now by only taking natural supplements.

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If you would have looked at those links closer you would have recognised that they were not commercial!!!

Is this about suppressing information??

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Hi brskac,

Congratulations on getting those pyroluria numbers nailed down for you and your son! That really shines a light on what you’re dealing with.

My question to you is how much vitamin B-6 and zinc do you take each day? I take 900 milligrams of vitamin B-6 and 800 milligrams of zinc a day. I’m wondering if I can trim that down.

I’ve read two posts from guys who said if they take vitamin B-6 too late in the day, it’s really tough to get to sleep that night. I have that situation as well, so I take my vitamin B-6 in 2 or 3 doses before 1 pm. If I forget and then remember, I’ll still take the last half as late as 3:30 pm.

I’ve read that magnesium is also helpful for improving one’s focus, especially for folks with attention deficit disorder. But you want to avoid magnesium oxide because it’s poorly absorbed. It’s also the cheapest form, so you’ll see it a lot.

There were a couple of folks waving the flag of science and medicine as if just because a scientist or a doctor says something, it must be true. I don’t mean to pick on anyone, but scientists and doctors get as many things wrong as the rest of us. A few years before Orville and Wilbur made their famous first airplane flights, there were a few mathematicians who were able to prove mathematically that heavier than air flight is impossible. According to their math, an airplane should not be able to lift off the ground. Back in the 1840’s, two groups of dentists were battling it out over using mercury. The ones who were against using mercury lost that fight. (Mercury was also called quicksilver or quacksalver, which is where the term quack for a poor doctor comes from.) To this day, there are dentists who continue to use mercury in fillings, even though any amount of mercury is toxic! That one really is a no brainer. You shouldn’t put mercury in someone’s mouth. A lot of medical people will tell you that eating cholesterol will clog up your arteries. Only about a third of the cholesterol in your body comes from the food you eat; your liver manufactures the rest. If you eat less cholesterol, your liver will make more. You need cholesterol to make all the steroid hormones and cell membranes. There’s more to that subject, but let me not digress to excess. (If you would like to know more, there are books and studies you can read, sort things out for yourself, which, honestly, most people don’t bother with.) The point is just because a doctor or a scientist says something, that doesn’t make it automatically true.

I’ve read several times that doctors in training get a page or less of information on nutrition! Honestly, your average doctor knows next to nothing about nutrition. I remember one doctor’s website that said if you had questions about nutrition, he couldn’t help, and you should seek, “a qualified healthcare professional.” He was supposed to BE the qualified healthcare professional, gee whiz. With a very few exceptions, most doctors just don’t know which vitamins and minerals do what.

I’ve seen 2 doctors, several nurses, 2 psychologists, a case manager (she was very nice), a therapist, and a woman whose specialty was drug interactions. None of them had even heard of pyroluria, though it’s common; 11 percent of the general population has it. It’s usually misdiagnosed as generalized anxiety disorder, attention deficit disorder, schizophrenia (I’ve read that as many as 30 percent of schizophrenics have pyroluria. The good news there is it is the easiest form of schizophrenia to treat), rapid cycling bipolar disorder or something else.

So as far as pyroluria goes, you really have to be your own advocate as learn as much as you can. If I had continued to depend on doctors and nurses, I would really be in sad shape right now. I’m doing much better because I educated myself about pyroluria, and worked out which supplements I needed to take by reading about pyroluria. That’s really tough to do when the thing I needed to sort things out with, my brain, was the thing that wasn’t working well.

http://en.wikipedia.org/wiki/Pyroluria

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Pyroluria is a controversial medical diagnosis.

I am not clear on whether it is possibly a variant of Porphyria. (The latter is r/t various types of mental illness, such as schizophrenia and other psychotic disorders. e.g. Madness of King George III)

There are a bunch of subtypes of Porphyria.

http://en.wikipedia.org/wiki/Porphyria

Maybe Pyroluria people really have one of the Porphyria conditions? Both seem related to red and purple pigments (porphyrins).

NB Not an endocrinologist.

So as far as pyroluria goes, you really have to be your own advocate as learn as much as you can. If I had continued to depend on doctors and nurses, I would really be in sad shape right now. I’m doing much better because I educated myself about pyroluria, and worked out which supplements I needed to take by reading about pyroluria.Have you tried any of the Herbalife products?