Pyroluria: Having Seizures, Depression, Sensitivity to Light, Sound, Touch?

First off I'd like to say that this is not a cure all. I'm definitely not selling anything, just trying to inform people.

I have a condition called Pyroluria. This is where your hemoglobin is improperly synthesized at times, and produces a molecule called a kryptopyrole. This has an affinity for vitamin B6. Then the newly formed compound, attaches to zinc before it's released into ones urine.

This can cause severe vitamin deficiencies for both nutrients, as well as omega6. These are needed for the proper function of your body. Without these all sorts of ailments occur.

It's neither denied, nor accepted by regular practitioners, it's just ignored.

Here's a list of symptoms of pyroluria:



Here is the estimated prevelance of the condition in certain populations:



Here's a LINK to the above quoted texts. There's many articles out there. Just do a google search. Also, it's thought to be fairly common amongst genius's or families with high aptitude.

I had a urine test for these pyroles done a few months ago. A range of 0-10 is normal, 10-20 is borderline, anything over 20 is considered pyroluric. My level was 57! It's estimated that 20% of schizo's have this as there main cause of disturbance. Once treated most individuals will FULLY RECOVER as long as they stay on their supplements.

I'm writing this here, because there's a lot of people here who don't fit in to the norm. Many people here report depression & delusional tendencies. I read a thread about IQ's 140-200. In it many people reported epilepsy, or their brain shorting out. Many people also reported insomnia, or nearly so. All of these symptoms MAY be caused by pyroluria.

It's really easy to test. You don't even have to see a doctor. You can order a home test kit, that you send in to a laboratory. The cost is $58, plus shipping. Here's a LINK to a place that does testing.

You can also simply take the nutrients described above for a week to see if you feel much better, and if symptoms become less severe or disipate entirely! In this case I'd recommend starting with a B100 vitamin and 50mg zinc picolinate. Take the B vitamin in the morning, and the zinc in the evening. Both with meals. This dose is safe and will cause no problems from taking it for one week. If you do have elevated zinc levels, after a few weeks of supplementing zinc you could induce a copper deficiency. That's about the only risk I can think of.

Personally I'll list my symptoms before treatment:

Insomnia: hormones were wacked out. I sleep 1-3 hours a day.
Chronic Fatigue
Depression
Hypomania
Hair greying and falling out!
Extreme sensitivity to sunlight, sound, and touch
Dry eyes
Flaky skin
Extreme anxiety & paranoia: couldn't be around just about anyone and thought everyone was talking about me, looking at me
Delusions
Auditory, rare visual Hallucinations

Now I've got 1/20th the stess levels, sleep regularly, am dropping delusions one by one as time moves on. No hallucinations, oily skin, no sensitivities to sunlight, sound, or touch. Hair is growing fuller! Stopped greying. Most only slight depression with an occasional moderate depressed state.

I've got my life back, and all I have to do is take my compounded nutrients. I strongly urge everyone to at least take a look into this, especially if you have some of the symptoms.

Once again, this isn't a cure all. Even if you have this, and correct it with nutrient supplementation, you could have many other genetically induced biochemical imbalances. This is an easy start to begin correcting a specific imbalance that one may or may not have.

If you have any questions, reply here or u2u me. I'll try to give you a fair answer quickly.

Peace everyone...


[edit on 19-12-2008 by unityemissions]

I'm surprised nobody has replied with an interest in this. It is very real, and quite common (1 in 10) .

The treatment is really easy, painless, with no side effects save your urine turning bright yellow!!

Most people notice improvements with nutrient supplementation within a couple of days! It's a $20, go to your local health store, try out a couple of vitamins experiment that I strongly urge anyone experiencing the slight insanity/madness mixed with brilliance type of thing.

It's beyond my comprehension that many people prefer to remain sick. This condition is genetic. It runs in families. My family knows I have this condition. I suspect everone in my immediate family has this condition. The test is inexpensive, but my ignorant, arrogant, and ever defying mother refuses to order it to check her, my father, or my brother. She insits she is well. I know she is very sick.

I really thought this information would be picked up here. The motto here is to deny ignorance. To inform oneself and others of information that is needed to know, in todays increasingly chaotic world.

This was the intention of my post. It's one thing to have an open mind, and quite the other to string together bits and pieces that aren't really related, while projecting ones inner tension as an outward manifestation of control.

I no longer believe there is an elite group of people pulling all the strings. The world is too complex, with too many different mindsets to have a single collective organization running things. These are delusions.

I've helped myself by seeking treatment. It didn't dumb me down, like pharmaceuticals. It unlocked my sanity, and gave me hope for myself and the world. I wanted to spread that to whomever may have the insight to listen, and is suffering from paranoia, delusions, and the likes.

It seems those who are sick for longer periods, or who have reached a certain point of no return in their minds, don't find the need to help their selves. They are the brainwashed fools.

I'm done with ATS. Last post, guys. Guess you won't be missing me.

Treat yourself well. Use common sense.

Farewell

[edit on 20-12-2008 by unityemissions]

let the thread die

noone knows what disease your talking about

(never heard of it...................)

I never knew it was a 'disease' a such, but i have a LOT of the things listed.
except a few, cant realy say depression fits most the time..

Light kills me, sunlight in the day no sun glasses and i have a massive headache after 10 min.
Interesting find. I'm going to do a little more reading and maby give the
recommendations a shot.
Possibly do the test later on when i have th cash.

If someone will not admit that they are sick, there is very little anyone can do to persuade them that they are. It's really hard when it's someone you care about, but in my experience it's best to wait until they're ready to change rather than trying to force change on them.



I saw this thread yesterday and did some research, since many of the symptoms are familiar to me, and I've been diagnosed with depression and treated pharmaceutically for several years now.

I found no supporting evidence for this condition except on sites that specifically promote it and link to either test sites or treatment sites – i.e., have a financial interest. The few peer-reviewed papers on the topic are discouraging. One failed to find the compound in the urine of any of the schizophrenics included in the survey, and one (in rat and mouse nerve tissue) found that the levels needed to effect signal transmission were far too high to account for symptoms.

I didn't post because I wasn't much in the mood for a debunking argument. Assuming you're healthy, taking some extra B vitamins isn't going to hurt you – who knows, maybe I'll even try it. But the science just isn't there to back this up as a major contributor.

And I would point out that the same symptoms are used to "diagnose" any number of conditions – including being an "indigo child".



I guess you're suggesting here that we all have this condition because we believe to one extent or another in conspiracy theories, and that if we take our B vitamins we will realize that they don't exist?

Maybe some people believe some things on this site because they are ill, but you just can't lump us all together like that.



Two things: most pharmaceuticals do not dumb down people who need them, and I hope that you are maintaining contact with a mental health professional in some form because self-medication can be dangerous.



This bit I don't follow at all.



Because one post didn't get the attention you thought it deserved, you're done with an entire web forum? Doesn't that seem like an overreaction?

reply to post by americandingbat

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Here's a link to the evidence for normal kryptopyrole's (mauve factor) in schizophrenics. It's true kryptopyrole's are not found to be elevated in schizophrenics. It's a similar molecule which was originally thought to be the kryptopyrole, and subsequently is still referred to as such.

Mauve

It's really easy to see why there's very little research published online. The treatment is vitamin therapy. Vitamins can't be patented, so no money for the big pharma companies. It's discredited because it'll take away from the greedy b*st*rds.

reply to post by Anonymous ATS

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You know, every once in a while "Anonymous ATS" makes a post that offsets all the semi-literate garbage that usually comes through

Thanks Anonymous.

I do still have more questions than answers though.

I followed the links to the various labs that claim they test for kryptopyrroles, and I couldn't find any specifics about what tests were done, what specific chemicals could be detected (only kryptopyrrole, or are metabolites detected, etc). None of them mentioned 2-hydroxyhemo-pyrrolene-5-one (HHPA), which is what this article identifies as "Mauve" factor.

So I remain pretty skeptical. But I'll keep looking

Try this source

Page 62

I think the main point to remember is that it's commonly known as kryptopyyrole. It's confusing. Some people refer to Kp as kryptopyyrole, while others include it, for simplicity, as HMMA & Kp.

I can't find a lab that states it tests for HMMA, but this is what the test is. Most people aren't concerned for the whole scientific name, just a general idea of what's going on and how to get rid of it.

If you are truly interested I would call a lab that tests for Kp and ask them specifically.

BTW, the anonymous poster in this and the above is..

reply to post by unityemissions

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I currently have several of these symptoms but not all, could this mean I have Pyroluria and don't know it? I am very thin for my build, (120lbs/5"10) and have absolutly no apatite ever, have a random sleep sceduall (if you want to call it one) and I would live in a cave if I had the choice, I can't stand light at all and noise is about 50/50 most of the time.

This is soooo interesting! I have been on SSRI's in the past, and they helped some with my anxiety and depression But I also have the metabolic symptoms of this disorder (pale skin, sound/light sensitivity) and I also can say that I have always felt much better when I am taking my supplements.

I am going to the doctor again on Jan 8th, but until then I plan to get back on my supplements; maybe I can forego the doctor entirely.

It's an interesting thread. I've had some experience with some of these symptoms, but had been led to believe it was caused by an infection.

People who have MS such as my cousin on my mother's side and myself having had seizures at a young age and now two of my children on anti-seizure medication, along with the youngest diagnosed with aspergers, leads to me to believe a possible connection with MS and a virus/bacterial infection and or vulneralbility.

I would imagine a spinal tap may also show something.

What else I found was the apparent sensitivity to salicylates:

www.salicylatesensitivity.com...

My assumption is that a bacterial infection will possibly migrate to to the brain when certain natural chemicals enter the body. Some other severe reactions could be from them dying, such as what's been mentioned with parasites.

Parasites and schizophrenia:

www.medicinenet.com...

There could be many other factors such as these or possibly all related?

The internet and these various suggestions can also add to a person's alleged psychosis and stress? Doctors can be helpful with advice and blood tests. I suppose with the right doctor, it can be even better.

reply to post by unityemissions

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Starred and flagged. This seems to be just what my wife has. I'll have to come back and read in detail after work Tueday.

No other than I

Thought you might be a little more open minded if the replied info didn't seem to come from me.

Yes, I went overboard stating that I'll not post again. I'm still having issues and am in the process of a full recovery (hopefully) .

My writing and thoughts were scattered all over the place in the original post. My apologies. Not my best day, or writing.

Peace to all. Please, once again if you have any questions feel free to u2u me. I've been researching this for a while. Am on a ton of supplements recommended by the Carl Pfeiffer Treatment Center. Can suggest supplements and more...

B

Hello OuttaHere,

I would suggest checking out the link between trytophan (precursor of serotonin) & niacin. Tryptophan is converted by the body to b3 & b6 when needed at a rate of 60:1 . Niacin is a potent antifungal antibiotic and all around antimicrobal in large doses.

The thought is that people with toxic levels of fungi, bacteria, microbes may be using the vast majority of tryptophan from the diet to convert into b3. This would cause serotonin to be depleted eventually. I think niacin (try inositol hexaniacinamide) would help you greatly!!

When taking these alternative approaches, it's hard to figure out what causes what. There's correlations, but it's a chicken and egg scenario when you begin trying to add it all up. It seems a root cause of many of these ailments may be an unhealthy gut.

What causes this? Probably many factors. Junk food, chemical additives, processed foods (which take out zinc) , lack of proper sleep, over stressing, genetic abnormalities, etc...

To repair the gut, I highly recommend purchasing glutamine, or glutathione. This alone will repair the gut in about 6 weeks time!! If you purchase glutamine powder, also use inositol. Best to just use the above inositol hexaniacinamide + glutamine.

Sound/light sensitivity is related to zinc deficiency. When zinc is deficient it's a cascading effect. Hundreds of enzymes become deficient and specific antioxidants are not properly synthesized. This leads to the sensitivities.

If you are also having insomnia, b3 is definately a must. I slept like a baby the first day I self-treated. If you are having this happen take 3 grams IH, and 3 grams vitamin-c spread out throught the day. One gram of each with meals, morning, afternoon, evening. This in NOT too much unless you have a known liver problem. Dosages 10's of times higher has been used before without problems. Many more reported liver problems come from pharmaceuticals. In fact, to my knowledge there's less than a dozen reported cases of liver toxicity from vitamins and tens of thousands of reported cases from pharmaceuticals.

Now that I think about it, since you are on pharmaceuticals be careful to watch your stool and for nausea, indigestion if you decide to take this. Stool should be brown from the bile produced in the liver. If it's not there's probably problems there. If there's nausea after taking the supplements with a full meal then the dosage is too high. I can take these two in these dosages on an empty stomache without any problems.

Be sure if you try the niacin to take the vitamin-c also. Niacin raises your histamine levels. Vitamin-c lowers them. Taken together in equal dosages, they work to buffer the histamine level to what the body requires.

B3 & Vit-C was the beginning of my treatment. I then went to zinc and b6 plus many more. You may need to do the same. Probably so, if you're having the light/sound sensitivities.

Once again the tests are easy. Either self experimentation, or get the mauve factor (kryptopyyrole) test done.

Hope this helps with all my heart

Goodluck All...

B

Oh yes, last thing to add tap water is very bad for you. Drink distilled or spring water. Tap water has fluoride and chlorine in it that destroys the internal flora of the gut. A BIG no-no. I haven't drank tap water in over a year. Lovin' it. After you switch, you'll be disgusted by the smell and taste of tap water. We're just so desensitized to it!

[edit on 22-12-2008 by unityemissions]

[edit on 22-12-2008 by unityemissions]

"YOU CAN TRACE EVERY SICKNESS, EVERY DISEASE, AND EVERY AILMENT TO A MINERAL DEFICIENCY"

Linus Pauling, Ph. D
(Two time Nobel Prize winner)

Excellent quote. The approach mentioned above by me is an orthomolecular one. Two guys pioneered this alternative medical approach. Linus Pauling, and Abram Hoffer.

These guys are brilliant visionaries!! Dr Hoffer is still alive and practicing in Canada. He's 91 years old and still very sharp!! He takes niacin & vitamin-c in megadoses daily

Here's a Link to a video with Dr Hoffer.

Niacin is so unbelievably miraculous, it clears up alcoholics cravings!! 2 out of 3 don't find a need to go back!! Without any additional treatment!! Found out by a co-creator of Alcoholics Anonymous and used on his close friends in AA!!

Bill Wilson

I'm glad you came clean – it's nice to know who's talking.

I can't speak for anyone else but I think I would have been as openminded to the info if I had known it was you. What impressed me was that the response: 1) acknowledged the point I made and didn't try to pretend it didn't exist; 2) pointed me in the direction of useful information; and 3) didn't get overly defensive about my questioning the matter.

Too often proponents of alternative medicine go directly to "you're being brainwashed by Big Pharma" if I question how something works, and that's a big turnoff to me. I question Big Pharma about how their products work, why wouldn't I ask the same things about vitamins?

And I'm glad you didn't actually decide to give up on ATS It looks like this thread is even getting some more attention, and it may pick up also after the holidays – everything on ATS seems to be slow right now.

PS – a caution about drinking distilled water. It can actually pull electrolytes out of your body, so be careful to keep your electrolyte levels up. I'm sure there's good information about this on the internet – I'm just passing along a warning from a friend who ended up in the hospital after switching to only distilled water without compensating for the loss of water-soluble nutrients.

[edit on 12/22/08 by americandingbat]