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  #11  
Old 06-21-2007, 12:14 AM
jcc jcc is offline
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I just want to know if I was reading (ha!) I should say seeing something.... about Hashimoto's and pyroluria being associated! The link doesn't seem to be working.

Kryptopyrrolurie und Hashimoto
http://www.schilddruesenpraxis.de/lex_kpu.html

And then, what connection to HPU?

Cara
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  #12  
Old 06-22-2007, 11:55 AM
halsgluten halsgluten is offline
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Quote:
Originally Posted by era View Post
.... the idea that pyroluria might actually be a causal factor for gluten intolerance, rather than the other way around. ...
Remember, pyroluria is generally the result of excessive red cell death.

I don’t accept that it is the excessive pyrroles that are the real problem. I don’t think hemolytic (from hemoglobin) pyrroles are particularly toxic in themselves other than the flushing of B6 and zinc, but there are abundant toxicities up the metabolic chains that lead to excessive pyrrole!

Common precursors to excessive pyrrole are excessive bilirubin, excessive hemoglobin, and excessive microbial hemolytic (blood) poisons. Excessive bilirubin and hemoglobin are both neurotoxic. At least some of the microbial hemolytic toxins are also neurotoxic.

Excessive bilirubin comes from excessive hemoglobin, and hemoglobin comes from red blood cell death (lysis). Non-genetic, excessive red blood cell death is cause by either massive physical injury or microbial infection.

So, if you have chronic hemolytic pyroluria, the most likely causes are:
  • You are a lousy martial artist (lots of bruising)
  • You have genetic weakness in your red blood cells
  • You have a chronic microbial infection, probably in the intestines (which leads us back to the question of celiac disease)
Given that hemolytic pyrroles are not so directly neurotoxic as their causes are, I suggest that the root causes of pyroluria, not pyroluria itself, are likely root causes of the associated neurological and psychological conditions.

While I think it is fair to ask whether microbial infection increases the risk of celiac disease, or vice versa, it is clear to me that pyroluria is not a cause of celiac disease but rather one of many possible symptoms of celiac disease.

Hal

See also:
http://brain.hastypastry.net/forums/...ad.php?t=16265
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  #13  
Old 06-22-2007, 12:53 PM
jcc jcc is offline
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Thanks for the thoughtful post, Hal.

Of the two doctors I saw, one believes pyroluria to be a primary condition, a genetic metabolic disorder. The other was not so clear, saying it was important/meaningful, but just saying 'it all went together'. I got the direct impression he did not consider it to be "the" primary problem, but a secondary/related problem.

Quote:
Given that hemolytic pyrroles are not so directly neurotoxic as their causes are, I suggest that the root causes of pyroluria, not pyroluria itself, are likely root causes of the associated neurological and psychological conditions.
I'm just thinking outloud here~ since pyroluria is largely treatable with nutritional supplementation to fix the vitamin B6 and zinc deficiency, along with a little boost of antioxidants and other supporting nutrients... I think I believe the associated neurological and neuropyschological conditions seen in pyroluria are a direct result of the vitamin deficiency. There is a lot out there describing depression, anxiety, panic, seizures, etc, related to B6 deficiency.

Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?

Part of the overall treatment of pyroluria is to identify food sensitivies, and eliminate those foods. My daughter has not subscribed to this part yet, but did improve on the vitamin therapy. Perhaps the 'quick fix'. I wonder, if the food sensitivies are addressed, whether a "pyroluric" would continue to experience pyroluric episodes? The nutritional supplementation makes absolute sense to bring things back into balance in the short run, but might a pyroluric remain in balance without the supplementation in the long run.... through dietary changes alone (correcting an underlying malabsorption problem)?

Do most pyrolurics have issues with food sensitivies?

The reason the part about excess bilirubin caught my attention, is that when I was B12 deficient, one of my lab abnormalties dismissed because it wasn't abnormal enough... was an out of range H bilirubin. ????? Once I corrected the B12 deficiency, it has never been 'off' again. What do you think my elevated bilirubin was a result of ?? I've never been tested for pyroluria, and don't feel symptomatic of it now, but looking back there was a point in my life where the symptoms did fit. I've often wondered if my low B12 was actually a result of low B6 (don't they 'need each other'... and a deficiency in one can cause a deficiency in the other?) I benefit from taking both.

Any more thoughts?

Quote:
While I think it is fair to ask whether microbial infection increases the risk of celiac disease, or vice versa, it is clear to me that pyroluria is not a cause of celiac disease but rather one of many possible symptoms of celiac disease.
I'm still not sure... seems sort of chicken and egg like to me...but I do not have a clear (or even foggy) understanding of the biochemistry of any of this. Now, how does the stress factor - factor in? Because, most definitely, my daughter spirals down during times of stress. The good news is that she (or I) can recognize that and vamp up her vitamin regimen.


Cara
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  #14  
Old 06-23-2007, 02:05 AM
halsgluten halsgluten is offline
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Default *** hoc ergo propter hoc

Note, like AGA IgG tests, the pyroluria test is easy to botch.
Quote:
Originally Posted by jcc View Post
pyroluria is largely treatable with nutritional supplementation to fix the vitamin B6 and zinc deficiency
One does not treat pyroluria with nutritional supplementation, one manages it with nutritional supplementation. Pyroluria is excessive pyrroles in the urine -- vitamin B6 and zinc do nothing to lower the pyrroles so the pyroluria continues. The nutritional supplementation merely replaces the specific nutrients that the excessive pyrroles continue to flush out.
Quote:
Originally Posted by jcc View Post
Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?
With Hemolytic anemia, the B6 and zinc deficiencies are not malabsorption issues. Vitamin B6 and zinc are specifically lost through the urine in the process of ridding the body of pyrrole. The more pyrrole you have to get rid of, the more B6 and zinc it takes. This does not exclude the root cause of the excessive pyrroles also causing malabsorption, SIBO would be just such a cause.
Quote:
Originally Posted by jcc View Post
when I was B12 deficient, one of my lab abnormalties dismissed because it wasn't abnormal enough... was an out of range H bilirubin. ????? Once I corrected the B12 deficiency, it has never been 'off' again.
Was it corrected by taking supplements or by fixing the cause?
Quote:
Originally Posted by jcc View Post
Of the two doctors I saw, one believes pyroluria to be a primary condition ...
...seems sort of chicken and egg like to me
Pyrroles do not arise of themselves. Everyone has them. It is a byproduct of red blood cell death. Red blood cells die. Red blood cells die faster when poisoned by biofilms. People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.
Quote:
Johns Hopkins
1. Folic acid deficiency or 2. Vitamin B12 deficiency:
= Reticulocyte count low; Indirect bilirubin high; MCV high
Hemolytic anemia:
= Reticulocyte count high; indirect bilirubin high
= High LDH; fragmented RBCs, spherocytes, schistocytes
Still, I should think Hemolytic anemia could also drop one’s B12 levels since your bones are cranking out those red blood cells.

Hal

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  #15  
Old 06-24-2007, 05:19 PM
jcc jcc is offline
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Thanks, Hal,


Quote:
Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?
I believe my daughters symptoms were mostly directly a result of vitamin deficiency, B6 in particular. The question I was asking is whether the vitamin deficiency was a result of pyroluria (flushing of B6/zinc), or from malabsorption due to gluten sensitivity. Or both. The neurological and neuropyschiatric symptoms associated with B6 deficiency are well documented.

Quote:
Pyrroles do not arise of themselves. Everyone has them. It is a byproduct of red blood cell death. Red blood cells die. Red blood cells die faster when poisoned by biofilms. People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.
Quote:
Pyroluria is excessive pyrroles in the urine -- vitamin B6 and zinc do nothing to lower the pyrroles so the pyroluria continues.
It was my understanding that the pyrrole levels do normalize with nutritional supplementation.... Don't they? I thought the 'right amount' of B6/zinc for pyroluria management varies by individual and is determined by adjusting the B6/zinc and supporting nutrients, and monitoring the pyrrole levels until they drop back to normal levels? And that becomes the 'right amount' of B6/zinc for that individual to 'manage' their pyroluria.

It leaves me wondering if nutritional deficiency is a problem on the front end and back end of they 'pyroluric' condition? Does nutritional deficiency result in elevated pyrrole levels in the first places, and then the further flushing of B6/zinc cause an even bigger deficiency....with more exaggerated symptoms? The downward spiral they talk about with pyroluria...?

I'm going to admit, I just haven't spent much time reading about this and trying to figure this all out... so I am shooting from the hip with my questions. I just know that my daughter responded remarkably and quickly to the nutritional supplementation, from serious depression/anxiety to completely fine...within about 3 weeks time. The subject matter has been too complicated for me to want to tackle... but the reality that gluten and other food sensivity seems to go along with this, at least sometimes... does make me curious about how that interelates. Hope I don't sound as 'lost' as I feel... .

Cara
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  #16  
Old 06-24-2007, 09:56 PM
annelb annelb is offline
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Hal said
Quote:
People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.
That is the question I asked Dr Betsy Hendricks yesterday. She gave a presentation about chronic infection involving biofilms being related to autism and fibromyalgia. I asked her if there may also be a connection to pyroluia. She did not look at me as though I was crazy to suggest this.
Anne
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  #17  
Old 06-25-2007, 01:32 AM
halsgluten halsgluten is offline
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Wow, there are only two old references to pyroluria on Pubmed; strange, I should at least be able to find a simple biochemical description of Kryptopyrrole (supposedly a complex of some sort of pyrrole, zinc, and B6).
Quote:
Heleniak EP, Lamola SW. A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria. Med Hypotheses. 1986 Apr;19(4):333-8. Review.

Cruz R, Vogel WH. Pyroluria: a poor marker in chronic schizophrenia.
Am J Psychiatry. 1978 Oct;135(10):1239-40.
WebMD has nothing on pyroluria; but then, neither does http://www.quackwatch.org/.
It seems hard to me to find current medical research on pyroluria. Maybe it could be studied under biliuria but that doesn't yeild any studies of B6 and zinc either.

National Library for Health "What is pyroluria, is it an accepted clinical entity and what are the treatment?" http://www.clinicalanswers.nhs.uk/in...?question=1208

Quote:
Originally Posted by jcc View Post
It was my understanding that the pyrrole levels do normalize with nutritional supplementation.... Don't they?
....
And that becomes the 'right amount' of B6/zinc for that individual to 'manage' their pyroluria
OK, caviate, I am having trouble finding independent documentation of the pyroleuria effect, so at present, my comments must be taken as extrapolations of the theories presented by pyroleuria advocates.

It strikes me that supplientation helps the body get rid of the excessive pyrrole, but since shortage B6 and zinc aren’t posed as the cause of excessive pyrrole formation, suplimentation should not slow down the excessive pyrrole formation. That is, pyrrole should drop in the blood, but not in the urine. Hmmm, maybe the answer in inclusion of kryptopyrrole (aptly named, I can’t find science on it). Taking it as given that kryptopyrrole is a complex of some sort of pyrrole, zinc, and B6; then a shortage of zinc and B6 caused by too much pyrrole should result in high pyrrole and low kryptopyrrole in the urine and treatment by high dose zinc and B6 would should result in low pyrrole and high kryptopyrrole. Do any of the pyroluria advocates write about relative pyrrole and kryptopyrrole levels?

It seems that the “right amount” of B6 and zinc should track a person’s pyrrole formation, plus what other B6 and zinc needs you have, plus make up for any malabsorption you may have.

Quote:
Originally Posted by jcc View Post
The question I was asking is whether the vitamin deficiency was a result of pyroluria (flushing of B6/zinc), or from malabsorption due to gluten sensitivity. Or both. ...
It leaves me wondering if nutritional deficiency is a problem on the front end and back end of they 'pyroluric' condition?
If you are malabsorbing B6 and zinc, and you are producing too much pyrrole, then I would say that you have two strikes against your B6 and zinc levels.

I’ve just read that pyroluria advocates consider the pyrrole source to be failures in hemoglobin formation, rather than hemoglobin from failed red blood cells as I suggest. I say both conditions exist as sources of excessive pyrroles.

That reminds me, Cara, B12 shortage from malabsorption or from vegetarian diet results in failure in the formation of red blood cell, ...hmmm..., the hemoglobin (16 pyrroles each) that was forming for the failing blood cell has to go somewhere. Red blood cells are maybe 5% pyrrole.
Quote:
Originally Posted by jcc View Post
Does nutritional deficiency result in elevated pyrrole levels in the first places, and then the further flushing of B6/zinc cause an even bigger deficiency....with more exaggerated symptoms? The downward spiral they talk about with pyroluria...?
GOOD, question, does B6 or zinc deficiency some how cause hemoglobin failure? If so, that would be positive feedback, but the body is built of negative feed back systems. I suggest the downward spiral might be attributed to the general progressive degeneration of things like celiac disease, that is, the injury is very slow, but at some point more and more of the stressed systems just start breaking down.

Hal
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  #18  
Old 06-25-2007, 11:45 AM
jcc jcc is offline
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Thanks again, Hal.

There is not much of anything anywhere on pyroluria, and if you ask a mainstream doctor about it... at least mine.. says it is very controversial. So is gluten sensitivity without celiac disease, though, so that doesn't mean a whole lot to me. And, I've seen dramatic improvement in my children when addressing these issues, so on a common sense level... I'm a believer in both.

Just in the last few years since my daughter tested positive, the number of labs testing for elevated pyrroles has increased. and although there is still a lack of information.... the number of pages you can google up has exploded. Still, they seem to be all the "alternative" type labs, that also do IgG food allergy testing, etc.

I have read that alternative medicine doctors have been treating pyroluria successfully for decades.

This is the best collective source of information out there on pyroluria, and it gives a list of some of the related research...some being quite old.
http://www.nutritional-healing.com.a...ding=Pyroluria

I've been hearing there is going to be a book coming out soon, but that was a couple of years ago and I haven't heard of one yet. It is discussed quite a bit in Joan Matthews Larson Depression Free, Naturally, but again, I lost my copy and can't remember the detail into which it goes.

Thanks for all your input~

Cara
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  #19  
Old 06-27-2007, 12:28 AM
halsgluten halsgluten is offline
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Cara,

Is there any history of itching ears, athelete's foot fungus, toenail fungus, or kidney stones?

Hal
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Old 06-27-2007, 02:15 AM
jcc jcc is offline
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No, not that I know of. Now my husband and his father, yes to bad toenails and foot fungus.

Cara
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