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Pyroluria

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@danii it just seemed that you are talking about B6 toxicity - which is an interesting topic - but I’m talking about B6 deficiency. They are related but different topics. I just wanted to make that clear. They are both important. We want the Goldilocks level of B6 as it’s a really important enzyme co-factor in the body. 

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kathy55wood
Quote from Jenny on November 26, 2021, 2:37 am

@danii it just seemed that you are talking about B6 toxicity - which is an interesting topic - but I’m talking about B6 deficiency. They are related but different topics. I just wanted to make that clear. They are both important. We want the Goldilocks level of B6 as it’s a really important enzyme co-factor in the body. 

No, I'm talking about the usual effects of vitamin B6 (increasing serotonin and TBARS). Pyroluria exists, but I'm not sure that treating it with B6 supplements is a good idea and I have expressed my concerns about this here. Symptoms may be caused by other things (e.g. VA toxicity), not allegedly B6 deficiency. 

Thanks @danii - it’s important to share opinions. 

I bought into the idea that pyroluria was driven by vA toxicity and I stopped my pyroluria supplement. I think vA toxicity does have an effect as it makes the liver less healthy. However, I now think that ignoring B6 deficiency has put me into a big mess. Even if the pyroluria will eventually improve on the vA detox (I think it will have a positive effect) if you don’t address the deficiencies while detoxing you will end up in trouble, with multiple food intolerances due to poor sulphate production and also anxiety. This locks you in a negative cycle where you can’t get better. 

If someone has pyroluria they need to keep up the supplement support while detoxing, is my conclusion from my experiences. If not, the lack of B6 puts a spoke in the detox process (lack of sulphation) and also leads to increased anxiety. Anxiety/stress blocks bile flow (Chris Shade) so also puts a spoke in the detox process. You end up in a negative vicious cycle. I’ve done the N=1 experiment. 

 

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HermesДаниил
Quote from Jenny on November 26, 2021, 3:54 am

Thanks @danii - it’s important to share opinions. 

I bought into the idea that pyroluria was driven by vA toxicity and I stopped my pyroluria supplement. I think vA toxicity does have an effect as it makes the liver less healthy. However, I now think that ignoring B6 deficiency has put me into a big mess. Even if the pyroluria will eventually improve on the vA detox (I think it will have a positive effect) if you don’t address the deficiencies while detoxing you will end up in trouble, with multiple food intolerances due to poor sulphate production and also anxiety. This locks you in a negative cycle where you can’t get better. 

If someone has pyroluria they need to keep up the supplement support while detoxing, is my conclusion from my experiences. If not, the lack of B6 puts a spoke in the detox process (lack of sulphation) and also leads to increased anxiety. Anxiety/stress blocks bile flow (Chris Shade) so also puts a spoke in the detox process. You end up in a negative vicious cycle. I’ve done the N=1 experiment. 

 

Have you measured VA levels?

Quote from Jenny on November 23, 2021, 8:47 am

Interesting thread @orion I’ve never been on the RP forum before! I agree with much of what is said but if pyroluria is a problem then B6 levels can get so depleted that food can’t replete. I know about B6 toxicity but that doesn’t mean some people aren’t very deficient (in fact B6 toxicity is probably cellular B6 deficiency from what I’ve been reading). Thanks for link.

Thanks Kathy @kathy55wood that’s very kind. I do feel I’ve been a fool but as you say we are all on a learning curve. My sulphur is right in the middle of the range but I’m not sure that sulphation problems would show up as free sulphur on a hair test. I suspect I have high cysteine levels making me react very badly to thiols in the diet. B6 is required for the enzymes that turn cysteine into taurine and sulphate so without B6 one is likely to get a build up. This is my current theory based on a number of clues. 

 

in fact B6 toxicity is probably cellular B6 deficiency from what I’ve been reading

Do you have links to these studies?

Yes I’ve measured vA levels but only once in the first year of the detox (it was high).

B6 cellular deficiency: I read some studies on the TLO (trying low oxalate) Facebook page, posted by Susan Owens. I have also heard Carolyn Ledowsky talking about high serum levels of vitamins equalling lack of cellular absorption, and it makes a lot of sense. I tend to listen to people who are seeing a lot of clients and have practical experience/solutions. My opinions don’t necessarily come from a pile of links but more an absorbing of information from a variety of sources over a number of years. I don’t think that B6 toxicity is fully understood and I certainly don’t have any answers. I just think it likely indicates that something else is dysfunctional. 

If anyone is interested in the world of heme production (of which pyroluria is one defect) then you may be interested in my reading/listening on secondary porphyria. Pyroluria and secondary porphyria are closely linked. Klinghart says that pyroluria is the deeper issue and Steven Rochlitz says it’s porphyria. I have no idea yet who is correct - research ongoing! 

Heme is produced by a series of 8 enzyme reactions, starting with succinyl-CoA from the Krebs cycle, which combines with glycine to produce ALA and so on… The heme is required in haemoglobin, however, 40% is used for CYP450 enzymes, which are a crucial part of our detox system in the liver. Therefore problems in the heme pathway impact detoxification and are therefore hugely relevant on the vA detox imo. 

If we ingest a toxic mushroom, our bodies have the ability to induce the appropriate CYP450 enzyme to increase detoxification capacity of that particular toxin and save our lives. This is great as long as the upregulated heme pathway is running smoothly. However, in some people the heme pathway has glitches. These can be genetic (serious but rare genetic diseases) or secondary (genetic predisposition & environmental trigger which are less severe but more widespread) and result in one or more of 8 enzymes being slow. This leads to a build up of an intermediate product called a porphyrin. Porphyrins are very toxic. 

Therefore in people with this porphyric tendency exposure to anything that induces CYP450 enzymes and upregulates the heme pathway can lead to a build up of a toxic porphyrin. This exposure can be a toxin, a drug, a supplement, stress, a virus etc etc. I’m quite sure that vA toxicity/detox could do it (could this be one explanation for the detox setback cycle??). Vitamin A uses CYP26 for its detoxification. 

Prople with this tendency (20% of population according to Steven Rochlitz) really ought to go slow with any detox and live a low stress/low toxin lifestyle. Just something else to consider. 

 

 

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timDonald
Quote from Jenny on November 28, 2021, 3:58 am

If anyone is interested in the world of heme production (of which pyroluria is one defect) then you may be interested in my reading/listening on secondary porphyria. Pyroluria and secondary porphyria are closely linked. Klinghart says that pyroluria is the deeper issue and Steven Rochlitz says it’s porphyria. I have no idea yet who is correct - research ongoing! 

Heme is produced by a series of 8 enzyme reactions, starting with succinyl-CoA from the kerbs cycle, which combines with glycine to produce ALA and so on… The heme is required in haemoglobin, however, 40% is used for CYP450 enzymes, which are a crucial part of our detox system in the liver. Therefore problems in the heme pathway impact detoxification and are therefore hugely relevant on the vA detox imo. 

If we ingest a toxic mushroom, our bodies have the ability to induce the appropriate CYP450 enzyme to increase detoxification capacity of that particular toxin and save our lives. This is great as long as the upregulated heme pathway is running smoothly. However, in some people the heme pathway has glitches. These can be genetic (serious but rare genetic diseases) or secondary (genetic predisposition & environmental trigger which are less severe but more widespread) and result in one or more of 8 enzymes being slow. This leads to a build up of an intermediate product called a porphyrin. Porphyrins are very toxic. 

Therefore in people with this porphyric tendency exposure to anything that induces CYP450 enzymes and upregulates the heme pathway can lead to a build up of a toxic porphyrin. This exposure can be a toxin, a drug, a supplement, stress, a virus etc etc. I’m quite sure that vA toxicity/detox could do it (could this be one explanation for the detox setback cycle??). Vitamin A uses CYP26 for its detoxification. 

Prople with this tendency (20% of population according to Steven Rochlitz) really ought to go slow with any detox and live a low stress/low toxin lifestyle. Just something else to consider. 

 

https://youtu.be/OyKZu7IyF9c

 

 

@jaj aren't you tired of figuring it out? When I try to read it and watch these videos, my head hurts from these paths, cofactors, etc. I like Grant's theory and approach much more - you have removed vitamin A and are waiting for improvements. Doctors, it seems to me, deliberately complicate everything.

Haha don’t worry about me. I trained as a research scientist so I don’t have a problem with pathways. 

I’ve been low vA for 3 years. If I’d seen a slow improvement then I’d be happy. This is not the way it’s worked for me. Some things better but some new issues have developed. Therefore imo something else is going on so I’m motivated to fit together the pieces. It’s just not that simple for some people. Wouldn’t it be lovely if it was a one size fits all. 

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kathy55wood

I get so lost with the scientific studies (sorry...not my forte...more of an arts kinda guy).

According to what I read online, macadamia nuts have .5 mg B6 per cup (37%). 

Not knowing anything about this, but knowing that it is absent vitamin a, I switched up my diet to beef/bison, salt, water, coffee, and macadamia nuts.  I also take  epsom salt baths up to 5 times/week.  Anyway, since starting this about a week ago, I went from constipated to VERY  regular.  Also, my symptoms seem to be getting lesser. possibly due to the regular bile excretion. 

However, like I said, I don't know as much about anything you guys get deep about.  But, this is a good sign, right?

 

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