Pyroluria, is it real? I'm really skeptical and here is why.

[Learner1]

Sorry, @Learner1, my friend didn't include a diagram. (-:

I thought not. But you did make an excellent stab at passing some good info along.

This is all so vexingly complicated....

 

[alicec]

Hope that helps!

Thanks very much.

 

[davisca]

By the way, if you get copper deficiency, you are open to horrendous infections - it could actually be a medical emergency. You want to know how to reverse the deficiency as soon as you can.

@Johnmac I'm curious if you've ever managed to get your iron up? Also, I'm curious about where the info is relating to infections and copper deficiency? I recently started supplementing zinc and began getting an upper respiratory cough and infection. I've been reading that Lyme disease will suppress zinc in order to avoid the immune system attack. My concern is could the high dose of zinc actually have boosted my system so that it could fight the infection/Lyme and that's the reason for the cough?

I am supplementing copper as well but do think that I am high in unbound copper/possible copper deficient in cells. Just waiting for test results.

Overall though, I agree that the zinc and B6 have really helped elevate my moods and despite this cold, I still feel peppy.

 

[Johnmac]

@Johnmac I'm curious if you've ever managed to get your iron up? Also, I'm curious about where the info is relating to infections and copper deficiency? I recently started supplementing zinc and began getting an upper respiratory cough and infection. I've been reading that Lyme disease will suppress zinc in order to avoid the immune system attack. My concern is could the high dose of zinc actually have boosted my system so that it could fight the infection/Lyme and that's the reason for the cough?

I am supplementing copper as well but do think that I am high in unbound copper/possible copper deficient in cells. Just waiting for test results.

Overall though, I agree that the zinc and B6 have really helped elevate my moods and despite this cold, I still feel peppy.

Actually the low iron was my daughter, & yes we did get it up eventually - by taking her to the doctor & demanding a couple of infusions. Both had to be fought for as doctors believe that ferritin 30 is normal, whereas it's very low.

Have no memory of where I found the copper info, sorry. Am no longer sure I had Cu deficiency.

Yep, the zinc & B6 do help us people with pyroluria-or-whatever-it-is.

 

[davisca]

@Johnmac - thanks for the reply!

I agree. My ferratin is in the same range and I've had issues with my serum iron as well. I'm just curious if it's the linger effect of an h pylori infection, which means absorption issues. Or if there's another hidden viral infection going on, which might then explain the low zinc. I have hypo symptoms and adrenal issues as well. So, perhaps the low iron could be related to this somehow.

Glad that the long term treatment with zinc and B6 is still holding up.

 

[pspa123]

I just tested myself for this because I was intrigued if skeptical. I took a belt and suspenders approach and tested with two leading labs -- not a split sample but taken within a short timeframe, same time of day, same day of week, no dietary or other changes in between. Followed lab instructions perfectly. One lab said over 20 which is very high. The other lab said 4 which is very low. The lab that said 20, whether or not this means anything, offered to sell me a consultation. Needless to stay, I am more skeptical than ever that there is anything meaningful here.

 

[Hip]

I just tested myself for this because I was intrigued if skeptical.

I am also skeptical that pyroluria has any links to symptom such as anxiety or stress intolerance; however, with the treatment for pyroluria simply being zinc and vitamin B6, it may be worth trying these supplements just to see if benefits appear.

 

[pspa123]

That is eminently practical, although I have seen really high doses recommended for treatment; B6 presumably would just wash out but zinc not necessarily and could deplete copper no?

 

[pspa123]

BTW I am trying to understand the disparity in the results and this is all I can come up with.
1. Lab error by one of the labs (unlikely I would think).
2. The high lab is falsifying results to sell consultations (again, unlikely).
3. The sample for the low lab had issues, although I specifically ruled this out with the director.
4. This just isn't a meaningful measurement because levels fluctuate dramatically (most likely).

 

[Hip]

I read that pyroluria testing is unreliable and inaccurate, so your lab results may just reflect that.

 

[Dominic Pukallus]

I just tested myself for this because I was intrigued if skeptical. I took a belt and suspenders approach and tested with two leading labs -- not a split sample but taken within a short timeframe, same time of day, same day of week, no dietary or other changes in between. Followed lab instructions perfectly. One lab said over 20 which is very high. The other lab said 4 which is very low. The lab that said 20, whether or not this means anything, offered to sell me a consultation. Needless to stay, I am more skeptical than ever that there is anything meaningful here.

Hi, have you been made aware that the HPL molecule (what is erroneously referred to as "krpytopyrrole") is very unstable? It is very prone to degradation in light, heat, and from oxidation. It's supposed to be stored with ascorbate (NOT ascorbic acid) and away from light, preferably frozen, between collection and testing.
This is, unfortunately, the kind of test which has a high rate of false negatives for that reason which may be due to any of the points of the chain between collection and testing. Your low reading may be due to this and I'd look into the quality of the lab you used to do this.

I've had to become a bit of a self-taught expert about these things since I myself was cured, of symptoms at least, from some pretty dire Mental Health disorders after testing and diagnosis. I've seen a lot of misinformation and confusion about this which is why I felt compelled to write this. I felt the best approach would be to tie all the research I found relevant into a little narrative, and let people explore as they see fit. There's a lot to wade through. I'd appreciate any comments.

 

[pspa123]

Thank you. Yes, I am familiar with the above, and as mentioned I followed the lab instructions for collection, freezing and shipment exactly, and I also spoke personally with the director of the "low" lab (an MD) to make sure there was not an issue with degrading of my sample. He indicated that they do a quality check on all incoming samples and no issue was identified with mine. As for the lab itself, it appears to be quite reputable and is one of the few in the US that comes up in a search for pyroluria testing. If anything, candidly, I am more skeptical of the other lab that offered to sell me a consult.

 

[Dominic Pukallus]

Thank you. Yes, I am familiar with the above, and as mentioned I followed the lab instructions for collection, freezing and shipment exactly, and I also spoke personally with the director of the "low" lab (an MD) to make sure there was not an issue with degrading of my sample. He indicated that they do a quality check on all incoming samples and no issue was identified with mine. As for the lab itself, it appears to be quite reputable and is one of the few in the US that comes up in a search for pyroluria testing. If anything, candidly, I am more skeptical of the other lab that offered to sell me a consult.

That's odd. For a lab to get a false 'high' value would involve either some really shoddy procedure I can't imagine, or downright fraud. It's impossible to identify something that isn't there using the method from what I understand if procedure is followed. I would be skeptical indeed.

That said, personal values do fluctuate as HPL is seen these days as a marker for oxidative stress. You did say they were both taken in a short interval, but could something have occurred before the 'high' test to cause a spike in oxidative stress? In one of the papers I linked to from my own article it shows that HPL levels are generally high in people suffering any kind of condition likely to increase oxidative stress, but that these are consistently and chronically higher in people suffering Mental Health issues.

As it's been found that B6 and zinc help with these issues, there is the postulated connection between B6, zinc (and others), Mental Health, oxidative stress, and HPL which has been lumped together as "pyroluria" or "Pyrrole Disorder" as a shorthand way of describing the connection. One of the reasons why more research is so much needed on this.

 

[pspa123]

No, no difference between the two days, I always have a very high anxiety level which was true for both samples. Unless the answer is that this just isn't a meaningful value to measure in the first place, which is choice no. 1 for me right now, I guess my second theory would have to be there was sample degradation for the low lab but not sure how that could have happened.

 

[Dominic Pukallus]

No, no difference between the two days, I always have a very high anxiety level which was true for both samples. Unless the answer is that this just isn't a meaningful value to measure in the first place, which is choice no. 1 for me right now, I guess my second theory would have to be there was sample degradation for the low lab but not sure how that could have happened.

Have you looked into the article I wrote on this? It's aimed at providing evidence which strongly suggests the value of this test, as long as this happens to be the Biochemical issue you actually have. The paradigm of Mental Health Biochemistry and nutrient treatments which has been put forward is that these are caused by a range of issues. The pie charts will give you an idea, Pyrrole Disorder/Pyroluria being just one of them. These all require their own tests.

https://biochemicalhealth.org/pyrrole-disorder-aka-pyroluria/

It's hard to know what might have happened given the limited information I have on the exact circumstances of the tests and their analysis, but I hope you'll find enough evidence in my article to enable you to make an educated decision on the matter should you chose to take a look at it.

Cheers,
Dom

 

[Violeta]

Hi, have you been made aware that the HPL molecule (what is erroneously referred to as "krpytopyrrole") is very unstable? It is very prone to degradation in light, heat, and from oxidation. It's supposed to be stored with ascorbate (NOT ascorbic acid) and away from light, preferably frozen, between collection and testing.
This is, unfortunately, the kind of test which has a high rate of false negatives for that reason which may be due to any of the points of the chain between collection and testing. Your low reading may be due to this and I'd look into the quality of the lab you used to do this.

I've had to become a bit of a self-taught expert about these things since I myself was cured, of symptoms at least, from some pretty dire Mental Health disorders after testing and diagnosis. I've seen a lot of misinformation and confusion about this which is why I felt compelled to write this. I felt the best approach would be to tie all the research I found relevant into a little narrative, and let people explore as they see fit. There's a lot to wade through. I'd appreciate any comments.

Excellent paper. Thank you.

 

[pspa123]

I would never discount anyone's personal experience, but at least for the moment my own experience with the dramatically different labs which I really can't explain as lab error has left me skeptical at least about the legitimacy of the testing, if not the alleged condition. There are just so many niche theories/conditions out there, all with their forceful proponents, it's so hard to navigate. Walsh of course seems very brilliant, but at the same time it appears only a few physicians worldwide are practicing his protocols, and at least a couple I looked into seem pretty fringe (for example one also offers astrological consults).

Walsh also claims he can cure autism and to me (parent of a now-adult autistic son who has heard every claim on earth) that is a huge red flag.

 

[Critterina]

I would never discount anyone's personal experience, but at least for the moment my own experience with the dramatically different labs which I really can't explain as lab error has left me skeptical at least about the legitimacy of the testing, if not the alleged condition. There are just so many niche theories/conditions out there, all with their forceful proponents, it's so hard to navigate. Walsh of course seems very brilliant, but at the same time it appears only a few physicians worldwide are practicing his protocols, and at least a couple I looked into seem pretty fringe (for example one also offers astrological consults).

Walsh also claims he can cure autism and to me (parent of a now-adult autistic son who has heard every claim on earth) that is a huge red flag.

It seems to me that the best approach to this situation is risk mitigation. If it's really dangerous to have a high result, pursue it - not treatment at first, but confirmation of the high lab result. You may also confront the lab with the low result saying that you think there may have been sample degradation and would they like to repeat it at no cost. Then, if it is confirmed, look at treatment options. If it's not really dangerous, then let it go.

 

[Dominic Pukallus]

Excellent paper. Thank you.

No worries. I'm pretty much self-taught on this, and the Biochemistry can be a bit daunting. I'm always open to suggestions on how to refine the argumentation and make it more accessible.

 

[Dominic Pukallus]

I would never discount anyone's personal experience, but at least for the moment my own experience with the dramatically different labs which I really can't explain as lab error has left me skeptical at least about the legitimacy of the testing, if not the alleged condition. There are just so many niche theories/conditions out there, all with their forceful proponents, it's so hard to navigate. Walsh of course seems very brilliant, but at the same time it appears only a few physicians worldwide are practicing his protocols, and at least a couple I looked into seem pretty fringe (for example one also offers astrological consults).

Walsh also claims he can cure autism and to me (parent of a now-adult autistic son who has heard every claim on earth) that is a huge red flag.

I recommend some more self-education on this, I'm hoping the links I provided will help you make a more informed decision. I can tell you've done a bit, noticing that the psychiatrist does astrological consults but ignoring the fact she does this in the context of an interpersonal psychotherapy working on archetypes. It's unfortunate that knowing just a little can give a skewed impression, compounding this with the idea that the two are linked in some way.

Prejudice is, literally, judgement before the facts are known and it seems prejudice is self-reinforcing. If it were not then there there would not be so much misunderstanding, since there is no claim of 'curing' anything. Dr Walsh and his team are at great pains to explain that in the various brain disorders they treat, they only reduce symptoms and enable better function often to the point of reducing medications completely.

I myself, cannot claim I am 'cured' since I rely on supplements for the rest of my life presumably though the aggressive antioxidant regime I give myself over and above the prescribed Walsh protocol (oxidative stress remember?) seems to be reducing my HPL scores and I may be able to look into weaning myself off the supps just as I did with the meds. I wish the same for your son.

Education is key, and here this means self-education.