Pyroluria - real disease or made up?

Started by ExSpiritual, March 18, 2008, 03:33:26 AM

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

ExSpiritual

This kind of serious question, so somebody with medical knowledge please respond seriously:

Lately I been hearing about this inborn disease called Pyroluria, something to do with kryptopyrroles or some shit.
It supposedely makes the body not being unable to "keep" the zinc/b6 and some other vitamines in the system causing lack of seratonin, lack of ability to cope with stress, emotional and physical.
it's also said to be the cause of ADD ADHD SCHIZOPHRENIA BIPOLAR etc etc.
it's supposedely flares up during early teen/late teen years after prolonged stress like a test at school, breakup, something like that.

I went through: breaking up with my "first real love", watching my dad die, and being in trouble with cops daily and smoking weed constantly for years to "clam my nerves" and got panic disorder with constant pani attacks so I guess this qualifies as "prolonged EXTREME STRESS"

reading the "check list"


1. Do you tend to skip breakfast or have morning nausea?  

My answer: yes, never ate breakfast as long as I can remember.

2. Do you tend to be anxious?

My answer: got panic disorder and severe OCD after all that stress

3. Do you have other members in your immediate or extended family with schizophrenia?

My answer: no, but my dad suffered temporary psyhosis every year(he was a heavy drug user so maybe he it was just drug induced?)

4. Are there members of your immediate or extended family who have committed suicide?

My answer: no but, some have been suicidal

5. Do you have white spots on your nails?

my answer: yes, had them since I was a little kid

6. Did you get a "stitch" in your side when you ran as a child?

my answer: yes I did

7. Did you have moderate to severe acne as a teenager?

my answer: no, i had very little acne

8. Do you have pain or creaking in your knees?

my answer: creaking yes, pain no

9. Do you have cold hands and feet?

my answer: yes, always had this and people other than me has noticed too

10. Do you have stretch marks as an adolescent or adult even without a large weight gain or loss?

my answer: no


11. Are your teeth or were your teeth before orthodontic treatment crowded with teeth growing over teeth?

my answer: yes


12. Did puberty start a little later for you than others?

my answer: opposite

13. Are you easily tired?

my answer: very, mom always suspected me of suffering fom Chronic Fatigue Disorder


14. Do you tend toward apathy?

my answer: definately

15. Do you have a tendency toward iron-deficiency anemia or test borderline?

my answer: no clue

16. Do you have eczema or psoriasis?

my answer: same as above

17. Do you have tingling sensations or even tremors in your arms or legs?

my answer: sometimes

18. Do you tend to have paler skin than other family members?

my answer: pale as a ghost

19. Do you tend to get overwhelmed in stressful situations?

my answer: don't think I used to, but now i get panic attacks when little stress occurs.

20. Do you have trouble remembering your dreams?

my answer: yes/no, hard to determine, think valium is the cause of this

21. Are you now or have you been a vegetarian?

my answer: was as a kid from 1-10 yaer old

22. Are you now or have you before been an alcoholic?

my answer: my teenage binging might qualify as alcoholic, but no;P


23. Do you find yourself socially withdrawn and dependent fairly strongly on one person?

my answer: maybe a little of both



So well, if pyroluria exist, I certainly qualify.
I've read several recovery stories from people who has ercovered from borderline disorder, bipolar disorder, ocd disorder, depression, anti social behavior and even schizophrenia.

This would seem to be the biggest breakthrough in history because the cure is so simple: eat b6, zinc and some other supplements and ur symptoms will dissapear within 3-12 weeks depending on how severe ur pyroluria is.
It's a life long supplement diet and if u quit, you relapse after 2-4 weeks.

The shit is, it seems NO serious doctor sites even mention this disease.
All I find is "alternative mental health" and some others.


So.... should I start binging these supplements(aret here any dangers of doing so?) and see if my anxiety fatigue depression and ocd goes away or  is this a "make belief disorder". not that they earn a penny on "claiming it exist".

this are the claimed stats of pyroluria in our public:



   * 30% of schizophrenics
   * 40% of persons with psychiatric problems
   * 11% of normals
   * 25% of disturbed children
   * 40% of alcoholics
   * 11% of the general population

The thing is: reading about the "disease" it seems to make so fucking much sense and explain most of my suffering.
I don't claim pyroluria is a proven disease, so don't hate on me for this thread.
I'm just trying to figure out if this could help my life

EricAK

Not trying to hate or shit on you, but here is the straight shit -

You have real troubles and are dealing with some sort of mental illness. No shame in that at all. Those are the cards you were dealt and now it is simpply a matter of dealing with them.

That said, no, you are looking for quick cures and simple answers to something that is not easy or simple. I wish I could give you more help with that.

What you need to do is resolve any internal conflict you have concerning mental illness and then seek out a good therpist or psychologist. The longer you put it iff, the harder it will be.

I have struggled with depression for many years. And I recognize it for what it is because there is a biological component to it. My father was diagnosed with depression when I was very young and he struggled for many years. So I know it is in my family. I sought help and I know how to work with it, not against it.

Also, FWIW, I sincerely hope you are NOT BPD, or Borderline Personality Disorder. A woman I had a relationship with was diagnosed BPD (and it explained A LT of what was going on with her and why I was so unhappy in that relationship) and it is a fucked up disease with a VERY VERY low rate of recovery. For your sake I hope this is not what you are dealing with, because if so, there IS NO QUICK CURE.

Get help dude. And remember there is no shame in getting help or having mental illness. Sincerely!
eat shit. a billion flies can't be wrong.

ExSpiritual

Thanks for your reply.
I accept I suffer extreme anxiety, which lead to dissociative symptoms of panic disorder called Depersonalization and Derealization (these are luckily temporary and good prognosis of 100% recovery, it's a survival mechanism that takes over when shit gets to the extreme and ur nervous system is unable to cope) + Pure O (mental ocd, constant anxiety irrational thoughts).
The depression I think is not Borderline or Bipolar, since I'm more or less "dead inside" numb, after all I've been through I think the depression is a RESULT of that, not genetically, cause as a kid and early teenager I was just as happy as the other guy.
I'm not an expert on Borderline, but I'm certain bipolar is out of the picture sine I never have manic episodes or any crazy moodswings.

Borderline, not sure, it seems to be very vague, it seems every teenager would fit that category.
is there any specific borderline symptoms that "stand out" and points directly towards this disorder like delusions/hallucinations does to schizophrenia?

I been to psychiatrists, but doesn't help much to sit and talk, cognetive behaviour etc.
Meds, never worked for me, except benzodiapines but I'm sick of them, I'm sick of being a addict to pills and want to get off them (slowly and controlled ofcourse).
I know that just 2 years ago I had none of this struggles, then all that shit happened and my brain just went overload and shut down. So I'm determined I shall recover, but I just wonder if pyroluria and some defiency in body supplements could be cause of this?

namidim

I also have had issues with depression and mental illness. Therapy and medication is complicated and may take a long time or be ineffective, but self-diagnosis and self-medication isn't going to get you anywhere. If the therapist you are working with doesn't help, find a new one. If the medication you are on isn't helping work with your doctor to figure out what will help.

The worst part about the whole thing is that when you are in the middle of it you are least inclined to be seek help, be patient, and keep working through the issues. Unfortunately that is what it takes. A skeptic chat room isn't going to get you what you need. Seek professional help and try to stick with it.

craig

You should talk to a doctor.  If it is a real disease that affects your vitamin levels, then they should be able to test for it.  I wouldn't put too much stock in the checklist though.  I would think that everyone would be able to answer yes to a majority of those questions.  They are just too vague to be diagnostic.

Ubermoogle

Just for the record, I answered yes to 11 of them. That's a little less than half.

As was mentioned though, I think I answered yes to the 7 or 8 of them that almost everyone would answer yes to.

Can't remember your dreams? I'm pretty sure that's pretty standard.

Got a stitch in your side when you were running as a kid? Yep. But I'm pretty sure that has something to do with the lactic acid buildup from muscle exertion.

Tingling sensations or even tremors in your arms or legs? Yep. Again though, probably not uncommon.

Tend toward apathy? Meh.. that's the last question I'm going to repeat here. It just doesn't matter.

I'll second what craig phelps said. See a doctor.

whitedevilbrewing

Quote from: "craig Phelps"You should talk to a doctor.  If it is a real disease that affects your vitamin levels, then they should be able to test for it.  I wouldn't put too much stock in the checklist though.  I would think that everyone would be able to answer yes to a majority of those questions.  They are just too vague to be diagnostic.


This one kind of reminds me of the list Scientology gives you to see if you're infected by thetans... or whatever.  


Ya, self diagnosis via checklist of symptoms is a poor way of going about it.

marc_carc

Hello ExSpiritual,

I came across this topic and I thought I may be able to give a new perspective. I'm not a Doctor but I have recently been diagnosed with Pyroluria. Firstly I will just detail a bit of my history.

When I was young I was very healthy, thin, and active. Then when I was 8 something changed, I put on tons of weight, became very moody. I was diagnosed with depression and was put on antidepressants.

Growing up I felt like I was always sick, but I always managed to cope. I was never "fit" and there just always seemed to be something wrong with my body. In my teens was the worse. If it wasnt one thing, it was another. I had pains in my muscles and joint, I had trouble reading, headaches, went to the gym but could never lose weight or put on muscle. I was ALWAYS tired. Really bad anxiety, and the worst was trying to manage my depression. Every couple of years my body seemed to not respond to my anti depressants which resulted in a tough transition time between medications. In those transition times I would often get in fights or lose my job.

I had lots of little physical problems which were never big enough for doctors to take seriously. For example I had really bad dry skin and dandruff. It got so bad sometimes I could not take showers because the water streams hittimg my back caused it to flare up. I had lots of medical tests done, but the doctors always seems to come back to the same conclusion, I was depressed. It was hard to argue with them because most of the time I knew I was, but I also knew that there was more to it.

In my adult life I decided enough was enough and I decided to look into what was causing my bad health myself. Several avenues were pursued such as neurological problems or my thyroid. I eventually saw a MD who specialized in chronic fatigue. After some tests (including a KP test for pyroluria) she found that I had a KP count of 65 which is quite big.  I am in the early stages of treatment but already I feel much better. I have lost an insane amount of weight in only a few months with very little exercise. I am not on antidepressants and I feel like a new man.

The really frustrating thing is that it is such a simple remedy, yet no doctor I had seen had even mentioned Pyroluria to me. Blood tests from my youth even showed that I had low B6 (key sign of Pyroluria) yet the Doctors didn't make anything of it.



So In my experience I would say that Pyroluria might not be the answer, but it is something worth checking out. If your having mental health problems then treatment from a therpist or psychologist and maybe neurological medications could help. But in my case it never resolved the other health problems Pyroluria was causing.

A simple test for Pyroluria is a Zinc Taste Test which you can purchase from a phramacy of health food store. Its simple a tests where a person with zinc deficiency cannot taste the fluid. Also go to a doctor and inquire about a KP test for Pyroluria. They are more expensive but at least you will have a definite answer.

In a previous post someone said "you are looking for quick cures and simple answers to something that is not easy or simple". In most cases that is probably true, but sometimes its not. After a life time of pain and suffering it was a quick cure and a simple answer which really turned my life around.

DVMKurmes

Pyroluria seems to be very popular among the "alt-med" crowd and there does not seem to be much good, evidence based information out there about it. I would be very cautious if a naturopath, chiropractor, etc is telling you about this. It seems to be a made-up diagnosis. Talk to an MD and/or a psychologist, not someone who is ready to sell you a lot of supplements and stuff you may or may not need.

marc_carc

I would not call Pyroluria a made up diagnosis. The kryptopyrrole urine test used to diagnose it is performed by scientifically recognized laboratories.

I believe the fact that pyrols in the body bind with zinc and B6 is not disputed. So if your body has a large number of pyrols in your system which are then lost when you urinate, it's fair to say your losing zinc and B6 in your urine. A simple blood test can be done to check these levels, and they are often low in people with a high kryptopyrrole count.

I dont know why Pyroluria is considered controversial. In my opinion its controversial because the condition can appear to be triggered for no reason, or some claim its triggered from stress which in my opinion is a very "alt-med" answer.

I'm not an alternative medicine kind of guy, I'm an engineer and I am very scientifically minded and I don't care much for hippies :) BTW it was a MD who diagnosed me, not some person trying to sell me something.

PS. I also agree the Pyroluria check list is pretty crap. I'm sure lots of people would easily answer yes to almost half of the questions. Go see a MD or someone who is qualified to check you out, but make sure they have some knowledge about Pyroluria. I have found that even some doctors will instantly discount Pyroluria as a serious condition, then you ask them more about it and they cannot tell you what the condition even is or why its not credible! I had the same problem trying to get information from MD's on hypothyroidism (and I guarantee thats a real condition).

vikki_400

Quote from: "EricAK"Not trying to hate or shit on you, but here is the straight shit -

You have real troubles and are dealing with some sort of mental illness. No shame in that at all. Those are the cards you were dealt and now it is simpply a matter of dealing with them.

That said, no, you are looking for quick cures and simple answers to something that is not easy or simple. I wish I could give you more help with that.

What you need to do is resolve any internal conflict you have concerning mental illness and then seek out a good therpist or psychologist. The longer you put it iff, the harder it will be.

I have struggled with depression for many years. And I recognize it for what it is because there is a biological component to it. My father was diagnosed with depression when I was very young and he struggled for many years. So I know it is in my family. I sought help and I know how to work with it, not against it.

Also, FWIW, I sincerely hope you are NOT BPD, or Borderline Personality Disorder. A woman I had a relationship with was diagnosed BPD (and it explained A LT of what was going on with her and why I was so unhappy in that relationship) and it is a fucked up disease with a VERY VERY low rate of recovery. For your sake I hope this is not what you are dealing with, because if so, there IS NO QUICK CURE.

Get help dude. And remember there is no shame in getting help or having mental illness. Sincerely!

I agree with all this, but wanted to add one thing: talk to your friends. When my friend was going through depression she found it really useful to talk to us before it got so bad that she needed to see a doctor. She found that this way she could head off her relapses without too much trouble and importantly without increasing medication.

DVMKurmes

Quote from: "marc_carc"I would not call Pyroluria a made up diagnosis. The kryptopyrrole urine test used to diagnose it is performed by scientifically recognized laboratories.

I believe the fact that pyrols in the body bind with zinc and B6 is not disputed. So if your body has a large number of pyrols in your system which are then lost when you urinate, it's fair to say your losing zinc and B6 in your urine. A simple blood test can be done to check these levels, and they are often low in people with a high kryptopyrrole count.

I dont know why Pyroluria is considered controversial. In my opinion its controversial because the condition can appear to be triggered for no reason, or some claim its triggered from stress which in my opinion is a very "alt-med" answer.

The problem I am having with this idea is that all I can find with google and pub-med searches are labs that advertise directly to the patient, a lot of comments linking pyroluria to a wide variety of disorders including depression, Bipolar, ADD, asperger's and autisim. If it was really a simple matter of a metabolic problem that could be solved with B6 and Zinc supplements, it would not be controversial. These types of problems are not that difficult to study-the metabolic processing and excretion of vitamins and minerals are well understood.

I get suspicious when I see loads of labs encouraging self-diagnosis and loads of alt-med practitioners pushing the idea on the internet. I could not find any peer-reviewed studies or papers on the internet, and I had not heard the term pyroluria until now. This all raises a big red flag in my mind.

I'm not an alternative medicine kind of guy, I'm an engineer and I am very scientifically minded and I don't care much for hippies :) BTW it was a MD who diagnosed me, not some person trying to sell me something.

PS. I also agree the Pyroluria check list is pretty crap. I'm sure lots of people would easily answer yes to almost half of the questions. Go see a MD or someone who is qualified to check you out, but make sure they have some knowledge about Pyroluria. I have found that even some doctors will instantly discount Pyroluria as a serious condition, then you ask them more about it and they cannot tell you what the condition even is or why its not credible! I had the same problem trying to get information from MD's on hypothyroidism (and I guarantee thats a real condition).
The problem I am having with this idea is that all I can find with google and pub-med searches are labs that advertise directly to the patient, a lot of comments linking pyroluria to a wide variety of disorders including depression, Bipolar, ADD, asperger's and autisim. If it was really a simple matter of a metabolic problem that could be solved with B6 and Zinc supplements, it would not be controversial. These types of problems are not that difficult to study-the metabolic processing and excretion of vitamins and minerals are well understood.


I get suspicious when I see loads of labs encouraging self-diagnosis and loads of alt-med practitioners pushing the idea on the internet. I could not find any peer-reviewed studies or papers on the internet, and I had not heard the term pyroluria until now. This all raises a big red flag in my mind.

marc_carc

B6 is used in the synthesis of serotonin, so a deficiency of B6 could potentially be a cause of mental illness. Get a blood test to check your B6 levels, and if they are fine then Pyroluria is unlikely.

DVMKurmes

After another pubmed search I did find some studies from 25-40 years ago.
unfortunately, they are so old the full articles are not available online. the abstracts and titles are not encouraging though.



1: Med Hypotheses. 1986 Apr;19(4):333-8. Links
A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria.

Heleniak EP, Lamola SW.
At least two groups of schizophrenics will be described. One such group may have a mutant delta-6-desaturase which prefers the omega-6-series essential fatty acids over the omega-3 series essential fatty acids resulting in low cis-linoleic acid blood levels. This subgroup may be related to the low histamine type schizophrenia. In contrast, we describe the possible existence of another group of schizophrenic patients with elevated cis-linoleic acid blood levels, elevated fasting insulin levels, elevated EGOT and urinary kryptopyrolle termed "delta-6-pyroluria." The etiology of this group may be due to a block instead of a mutant delta-6-desaturase. The elevated fasting insulin level may be an attempt to overcome the malfunctioning pathway.

PMID: 3520252 [PubMed - indexed for MEDLINE]

1: Clin Chem. 1978 Feb;24(2):230-3. Links
Hemopyrrole and kryptopyrrole are absent from the urine of schizophrenics and normal persons.

Gendler PL, Duhan HA, Rapoport H.
We describe a method for detecting hemopyrrole and kryptopyrrole in urine, with a detection limit of 100 mug/liter (1 part in 10(7)). Urine is thoroughly extracted with methylene chloride and the extract is concentrated and examined by gas chromatography and gas chromatography-mass spectrometry. No hemopyrrole or kryptopyrrole could be detected in 52 samples, from 17 controls, 29 schizophrenics, and six persons with acute intermittent porphyria.

PMID: 627053 [PubMed - indexed for MEDLINE]


: Am J Psychiatry. 1978 Oct;135(10):1239-40. Links
Pyroluria: a poor marker in chronic schizophrenia.

Cruz R, Vogel WH.
PMID: 696910 [PubMed - indexed for MEDLINE]

1: Biol Psychiatry. 1975 Dec;10(6):685-6.Links
Letter: Urinary kryptopyrrole.

Sohler A.
PMID: 1201325 [PubMed - indexed for MEDLINE]

If someone else knows more about this or has access to these old journals, maybe they can tell us more. It looks like there was some investigation in this area that was not productive. Some of the labs that test for urinary kryptopyrrole also do questionable hair testing, etc.
I'm afraid my red flag is still flying. I would be reluctant to spend my money on this.