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OK, so I recently asked my doc about pyroluria... she looked at me as if I was talking about tin foil hats or something, she had never heard of it before and didn't seem interested in looking further into it. I must admit, "kryptopyroles" sounds like something out of a Star Trek episode to me, so I can't help being a little sceptical myself.

I've read up on this on the internet, but the sources of info I could find all seem a little "out there", so I don't know. I seems to be linked to schiz, which makes it that much more interesting for me.

Has anyone here been tested and/or treated for it? What are your experiences?

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Interesting shit! This link... [link=http://www.kryptopyrrole.com/"'>http://www.kryptopyrrole.com/" target="_blank]http://www.kryptopyrrole.com/[/link] can test your pee for this disorder for $50. Nothin' like sending pee through the U.S. mail!

Never heard of this disorder, but here is an exerpt (from url above):

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Most commonly called Pyroluria, the root cause is the production of too much "kryptopyrrole" (KP) or "hemepyrrole" (HP) in the blood.

The symptoms of excess urinary kryptopyrrole first manifest themselves as behavioral abnormalities. ...the symptoms are consistent: poor tolerance of physical and emotional stress, mood swings, depression, sensitivity to light, noise and other tactile sensitivities. Later symptoms can range from severe depression to chronic schizophrenia. Accompanying physical symptoms can include pain, seizures, even complete physical debilitation.

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There is another post regarding this topic here:

http://www.crazyboards.org/forums/index.ph...ost&p=41884

Also, I am going to cross post this to schizophrenia topic, since it is related and not mentioned there. (I searched the board for the word pyroluria, which is how I know.)

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From www.drkaslow.com (emphasis mine)

To make the initial diagnosis, no vitamins or minerals should be taken for two days before the urine is collected (This is to avoid false negative results). The specimen should be handled properly as well - collected and frozen immediately and protected from any light by being placed in aluminum foil.

And this from someone who apparently believes it to be a valid diagnosis. All in all, it sounds like a crackpot waste of $50

There's little chance that you can have a genetic defect in prostaglandin and hemoglobin synthesis and no signs show up until you've peed in a cup.

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Hmm... this disorder seems more and more obscure to me. According to this site, these are the symptoms:

Signs and symptoms of pyroluria are many. There seems to be a familial or genetic component. A family history of mental illness and all-girl families especially if there is also a history of miscarried boys.

" Frequent ear infections as a child, as well as colds, fevers and chills.

" Fatigue

" Nervous exhaustion

" Insomnia

" Poor memory or inability to think clearly

" Hyperactivity

" Seizures

" Mood swings

" Lack of regular periods in girls

" Impotence in males

" Unusual smelling breath and body odour

" Inability to tolerate drugs and alcohol

" Cold hands and feet

" Abdominal pain

" Intolerance to some protein foods, drugs or alcohol

" Morning nausea and constipation

" Difficulty remembering dreams

" Frequent head colds and infections

" Stretch marks in the skin

Not all the symptoms are present for every pyroluric but any number of them should make you suspicious.

Pyrolurics can often be identified by their appearance:

" Pale skin. A black pyroluric will have the lightest skin in the family

" A lack of hair on the head, eye brows and eye lashes

" Teeth in the upper jaw will often be overcrowded (unless orthodontic treatments has taken place). and poor appearance of tooth enamel.

" White marks on fingernails, be opaque and be tissue paper thin.

" Acne, eczema, and herpes may also be present.

Ooh, and I checked Wikipedia's article on pyroluria of course.

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  • 2 months later...

My son has pyroluria. He was diagnosed in December last year. Prior to that wehadendured two years of hell. He had a nervous breakdown when he was 13 and was very violent to the family. We have all had injuries from him. We saw psychologists and psychiarist and he was put on antidepressantsand antipsychotics none of which helped. We were told to ring the police when he got violent but Icould not do that to my son. We tried everything. We found a GP who thinks outside he square and tested Sean for pyroluria, he tested positive. Within a week of starting mega doses of zinc and b6 we saw fantastic improvement and he has continued toimprove. This is a real illness and should be recognised. I have provided the psychiatristwith information but he just tells meit is not a recognisedmedical condition even though he admits Sean has improved dramactically. I cannnot stress how much findingout about pyroluria has changed our lives. I was in danger of losing my son. Now I have a happy successfulyoung man living at my house.

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  • 4 months later...

Yes Yes Yes!!!

THIS IS A REAL CONDITION.

I've got it. Tested came positive with a result of 57! Severe pyroluria. I'm unityemissions. You can google my handle along with Pyroluria to see what I've been through. I was essentially schizophrenic last year. Almost instantly most symptoms were greatly diminished upon mega-dose therapy. As far as I can tell, here's what happens.

It starts with a faulty or missing gene. I think it's called FADS1. This is needed to produce an enzyme called delta-6-desaturase. Without this enzyme, gamma-linoleic acid is not synthesized from linoleic acid. Without GLA in the body, hemoglobin is abnormally synthesized resulting in the Kryptopyrrole molecule that attaches to b6 and zinc (amongst others).

The root of this lies with the gene, but as we are unable to fix this (as of yet) the next link in the chain is all about GLA supplementation. This will reduce Kp production in the long run.

The short-term fix involves megadoses of b3, b6, & zinc.

I take a plethora of pills daily. Around 20. Quite necessary, and I've never felt better!!

;)

If anyone has questions regarding pyroluria you can email me. I've been studying this for a half-year and have learned a bit.

Peace

Brandon

unityemissions@gmail.com

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I've got it. Tested came positive with a result of 57!

57 what? As long as the units of what was measured don't have to be revealed, you can claim just about anything is high or low, positive or inconclusive.

Even if you do have pyroluria as a result of a transcription error in FADS1 and/or FADS2, most of the work on the enzyme deficiency is related to the more common effects on inflammation and coronary artery disease. As a result I find it damned hard to believe that "pyroluria" is all that common a contributor to schizophrenia. At least one study looking into one of the common expected outcomes (myocardial infarction) concluded "It is possible that, at current intakes of ALA, any potential defect in the transcription of the gene is masked by the availability of substrate. Further research in populations deficient in ALA intake is warranted." (American Journal of Clinical Nutrition) Translation: a human may need to be both genetically predisposed AND have a GLA-deficient diet to have ANY symptoms.

The good news is that you did not actually have schizophrenia and the treatment seems to be working. The bad news is that your regimen won't do squat for a person without an impaired enzyme function (possibly not even then.) A person who does have schizophrenia, convinced that this is the magic way to get rid of the heavy-duty antipsychotics, is likely to be screwed over royally.

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  • 2 weeks later...
Guest unityemissions

I've got it. Tested came positive with a result of 57!

57 what? As long as the units of what was measured don't have to be revealed, you can claim just about anything is high or low, positive or inconclusive.

Even if you do have pyroluria as a result of a transcription error in FADS1 and/or FADS2, most of the work on the enzyme deficiency is related to the more common effects on inflammation and coronary artery disease. As a result I find it damned hard to believe that "pyroluria" is all that common a contributor to schizophrenia. At least one study looking into one of the common expected outcomes (myocardial infarction) concluded "It is possible that, at current intakes of ALA, any potential defect in the transcription of the gene is masked by the availability of substrate. Further research in populations deficient in ALA intake is warranted." ([link=http://www.ajcn.org/cgi/content/full/85/2/554" target="_blank]American Journal of Clinical Nutrition[/link]) Translation: a human may need to be both genetically predisposed AND have a GLA-deficient diet to have ANY symptoms.

The good news is that you did not actually have schizophrenia and the treatment seems to be working. The bad news is that your regimen won't do squat for a person without an impaired enzyme function (possibly not even then.) A person who does have schizophrenia, convinced that this is the magic way to get rid of the heavy-duty antipsychotics, is likely to be screwed over royally.

I tested at 57.65 mcg/dl of kyrptopyrrole, or hydroxyhemopyrrolin-2-one, in urine.

DO YOUR HOMEWORK before posting. This is very real. Vitamins are KNOWN to treat up to 90% of schizophrenia.

I don't know for sure that it is rooted in the FADS1 or FADS2 gene. I got that information for this source

Link

The guy claims to be a chemist, but I don't know this to be true either.

I do know that this can be tested for and treated. I've gone through the process, and so have many others. I was going through hell, to say the least. If it wasn't schizophrenia, then it was an extreme case of bipolar, with psychotic tendencies, auditory/visual hallucinations, and partial insomnia!

I think you are making an ignorant statement saying that a vitamin regimen won't do anything for an enzyme dysfunction. This is just plain false. Vitamins at very-high doses act like drugs. They change gene expression, amongst many other things.

B

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From [link=http://www.drkaslow.com/html/pyroluria.html" target="_blank]www.drkaslow.com[/link] (emphasis mine)

To make the initial diagnosis, no vitamins or minerals should be taken for two days before the urine is collected (This is to avoid false negative results). The specimen should be handled properly as well - collected and frozen immediately and protected from any light by being placed in aluminum foil.

And this from someone who apparently believes it to be a valid diagnosis. All in all, it sounds like a crackpot waste of $50

There's little chance that you can have a genetic defect in prostaglandin and hemoglobin synthesis and no signs show up until you've peed in a cup.

My god you're not only ignorant you're quite arrogant as well! You should look into that, man.

Why is there little chance of having this genetic defect?! Even if there is, does this in any way discount the validity of his statement?! To the possibility that he does in fact, have this?! NO. Not whatsoever. Geez, man.

Signs show up before we test. It's the reason we find the need to take the test in the first place, fool. I didn't ask for this affliction, and it's not simply in our heads. IT'S REAL MORON.

I'm not trying to prove anything to you, because you are obviously a close-minded jackass, but this is for anyone else who may come across this board. If you think you may have this, look into it. You may not, but it's fairly common, so it's worth a measly $50 test. How someone could think otherwise, considering the severity of the condition, is beyond my comprehension.

B

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Hey Brandon, it's interesting to hear about pyroluria, I must confess I was ignorant about it too. And I'm glad you are doing well although it must be fun wolfing down all those big vitamin tablets every day ;)

I wouldn't be discounting this as a genuine condition from what I've now read. And it's great you found out about it & are treating it successfully.

But I do have to raise a question about the statement that vitamins can treat up to 90% of schizophrenia... I would like to know which medical site or paper you got this info from? I can't find anything that confirms this statement, at least not when searching medical sites. I would be worried about schizophrenics going off their meds in favor of vitamins. By all means, ADD vitamins to the regime, but someone who is genuinely schizophrenic (and not pyroluric), could risk a serious relapse of their condition if they took this at face value.

Could you please post a link to the medical study that shows that vitamins can cure schizophrenia? I am most interested in reading it. Thanks!

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Hi Generica,

I'm quite hung over from lastnite and want to make sure I get a couple of good links for this, so can you give me a day and I'll be back with that information.

Basically, in up to 90% of schizophrenic cases, there is one of three underlying problems. It's either undermethylation (high-histamine histadalia), overmethylation (low-histamine histapenia), or Pyroluria.

All of these have been shown to be treatable with mega-vitamin therapy.

4 of the other 10 percent have cerebral allergies which may be treatable with niacin and vitamin-c. The remaining 6 percent are still unknown.

Keep in mind schizophrenia is a catch-all for serious mental illness that is unknown. It's a BS label, because up to 94% CAN be known as to the major cause ( not necessarily the root cause, but science is working on that, day by day), and treated effectively.

Schizophrenia used to be known as insanity, now-a-days it's usually labeled bi-polar, with psychotic tendencies, or something similar. They are looking at effects and symptoms which seem to stem from biochemical imbalances.

It's horrible that society tends to demonize and/or immoralize these individuals for something that they were most likely born with!

Also, if you check into the occurrences of schizo/insanity before and after the industrial revolution, you will see a clear sharp rise! This gives way to an understanding of how heavy metals and hardcore pollutants used in industries, interact with genetic anomalies to bring about these diseases.

Respect,

Brandon

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Guest unityemissions

oops, forgot to comment on the dropping drugs for vitamins thing...

Yeah, vitamin therapy should be ADDED to pharmaceutical therapy, if you are already on this. DO NOT go off your meds cold-turkey. SERIOUS consequences can occur from this.

From what I've read, orthomolecular practitioners tend to introduce the treatment, look for possible drug interactions carefully, and SLOWLY wean off the meds, as positive results occur with vitamin therapy.

I think the regular protocol is cutting the prescription in 10% increments. Some people still need small doses of pharma-drugs to stay well, although I tend to think this is just a dependency issue. That if one was first started on megavitamin therapy, one would get well naturally and never need anti-psychotics. Maybe not. Not sure, but I know I don't need them.

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*holds head in hands while groaning*

p.s. I have a spare philosopher's stone for sale

p.p.s. CB will be arranging an all inclusive charter to consult with the Oracle of Delphi this spring.

Can I go? I like Greece. Lot's of history and the warm Med to swim in. Very therapeutic. ;)

Maybe our guest missed a couple decimal points in his post. Seems feasible that a *very* small percentage could have a vitamin defiency and medically accepted tx would be aided by supplements.

I also hope our guest realizes that the only studies concidered credible here are peer reviewed research that are published in recognized scientific or medical journals. Mutiple confirming studies also are preferred in making a case. I mean, I can create a website and make claims about anything I like, and I proclaim Greece a very therapeutic treatment that should be covered by insurance!

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Guest unityemissions

*holds head in hands while groaning*

p.s. I have a spare philosopher's stone for sale

p.p.s. CB will be arranging an all inclusive charter to consult with the Oracle of Delphi this spring.

Can I go? I like Greece. Lot's of history and the warm Med to swim in. Very therapeutic. ;)

Maybe our guest missed a couple decimal points in his post. Seems feasible that a *very* small percentage could have a vitamin defiency and medically accepted tx would be aided by supplements.

I also hope our guest realizes that the only studies concidered credible here are peer reviewed research that are published in recognized scientific or medical journals. Mutiple confirming studies also are preferred in making a case. I mean, I can create a website and make claims about anything I like, and I proclaim Greece a very therapeutic treatment that should be covered by insurance!

See, this is the problem. Only recognized scientific or medical journals, eh?! How are they recognized?! By whom?! And what agenda do they try to push?! Who funds them?!

Come on, guys! Look at the BIG picture here. Pharmaceutical companies pay off most high-level researchers to NOT look into this stuff. They give grants to research they want published and deny those that go against there plans. It's REALLY easy to see why. Vitamins can't be patented, so the big-pharma companies won't make money.

What is there agenda?! To make profits. THAT'S IT!! Can't do that by recommending vitamins! Not when you're in the business of keeping people ill.

Listen, the open-minded people will take this as is, and do there own research. Close-minded people will trust the institutions who seem to claim to know how everything works, but I say F all of that.

I know better, and sought treatment which is mostly labeled as quackery, nonsense, etc. I GOT WELL!!! Go figure.

THE WORLD IS NOT FLAT!! WAKE UP

and yes, I'm still taking time to post the links, as google filters there searches and it's damned hard to find information on this as it was mostly burried a long time ago...

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Oh, and as to providing me a philosophers stone. Spare me. I may not be a super-genius, but I am gifted. I can see there is no box AND have common-sense.

I'm sick of the supposedly brilliant minds, who just follow the status quo. That is just dumb. Nobody knows the whole picture, myself included.

I do know that vitamin therapy works. That it has been PROVEN a long time ago that everyone is biochemically different. Everyone requires different amounts of vitamins. In certain conditions, some people require massive doses of specific vitamins. The RDA should be abolished.

I'm backwards. What of it? I think a lot of science is pseudo-science. And vice-versa. I don't look into a crystal ball, or anything like that, but a lot of what was taught to me in school was SO VERY idiotic.

I'm the guy who went to school once every week or two, aced most everything, then became an exception to the rule because they passed me even though I had 30+ absences each year. IT'S ALL MOSTLY BS, and FOR A REASON. TO KEEP YOU DUMB AND COMPLACENT!!

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I am truly happy that you found the right solution for your illness. I also am truly sorry that you were misdiagnosed. Seriously.

The thing is, the level of mass conspiracy that you are proporting is absurd. There have got to be a million psychiatrists in the US and at least half as many researchers looking into neurological disorders. Most people go to med school or major in neurology/psych/biology/whatever because they truly want to help others get well. All of these people did not graduate from school and sell their souls to big-pharma. Further, all it takes is three confirming researchers to force a break through in medical approach. Three out of over a million. I'm thinkin' that's a rediculously low percentage to bow out of the conspiracy, no?

There has been a log of legit research into the role of vitamins and minerals in mental illnesses. If not, we'd have lead in our paint still to name one obvious one. In fact, [link=http://www.ncbi.nlm.nih.gov/pubmed/18587164?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportP

anel.Pubmed_RVDocSum] here[/link] is the link to the research you are seeking. It is in the peer reviewed, formally recognized National Library of Medicine. Does that make it fake? Part of the conspiracy? Ah, yes, then right next to that review is [link=http://www.ncbi.nlm.nih.gov/pubmed/1828703?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel

.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed]this[/link], which says results don't support further research. Of course, there is further research as there should be. BUT, there is not a stellar 90% cure finding. If it existed, almost no one would have a mental illness. We'd take extra vitamins instead.

You are fortunate to have a curable illness. You also were fortunate enough to figure out what cured it. That is great, really. However, assuming that everyone else with schiz or a mental illness is just duped by big pharma and isn't willing to try alternatives is insulting on many levels. You don't know how many here have tried vitamin and other non-pharma therapies to have their hopes smashed (and perhaps ended up in the psych ward or jail because of the experiment). You don't know what it's really like to know that those big pharma meds are your best/only viable alternative - I mean today. And, you don't know the potential damage you could bring by suggesting to an unstable reader that vitamins instead of meds are the best treatment.

So, back up a second, dude. If you want to make a rational case, then make it. Just back it up with results that are credible and drop the massive nationwide conspiracy theory. It doesn't pass a test of reason.

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Stacia,

Thanks for the mostly kind words.

I'm okay dealing with the seemingly absurd. I value intuitions over reason. The million psychiatrists and researchers are still within the box. Once again, they can only do research with huge funds of money. Where does this come from?

I realize that SOME people who go to med school truly want to help people. Don't forget that doctors tend to make the dough. It's not about their intention, it's about the intentions from all the super-rich psychopaths out there. The CEO's and what not.

There is ALWAYS a reason which a research trial can be viewed as being faulted. I just wish people were as tough with most pharmaceuticals as they were with vitamins! What is the 3rd leading cause of death in the US?! Malpractice. Either a surgery gone wrong, or a psychiatrist prescribing medicine, it's a huge number!! Tens of thousands of people die from pharmaceuticals yearly.

I never said cure. I said treat up to 90%. There is a difference.

It's not necessarily that people aren't willing to try ortho, it's that most people don't even know it exists! I don't find fault in the people, just really upset with the corpo-government hijack of common sense! People who are at the top (CEO's, Senators, etc...) are too disconnected from the way most everyone lives there life, to truly feel for them. Or so it seems to be. They lack an understanding of what it means to be human! Confusing money, for love...

Just because a much needed tech exists, does not mean it will be accepted. Tesla comes to mind...

I think the problem with most studies that have tried vitamins is that they don't use high-enough doses. Vitamins are vitamins, until you reach a certain threshold, then they act more like drugs.

I fully agree, don't know what it's like to be dependent on pharmaceuticals to keep me sane. I'm not trying to belittle someones treatment, or life story. I KNOW some people have it much worse that I. I am sorry if I offended anyone who is troubled. My deepest apologies.

And no, I don't know what trouble I could be bringing onto someone by suggesting to ADD vitamin supplements to whatever medications they are currently taking. Especially after I stated to search for drug interactions, and slowly, if at all, wean off of pharma drugs.

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I'm the guy who went to school once every week or two, aced most everything, then became an exception to the rule because they passed me even though I had 30+ absences each year. IT'S ALL MOSTLY BS, and FOR A REASON. TO KEEP YOU DUMB AND COMPLACENT!!

Congratulations, Genius.

Genius...heal thyself....somewhere else.

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