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

[pspa123]

And tarot readings too, I assume you saw she offered those. Sorry, and I respect all you say and appreciate the time and effort you have put into your posts, but there's a limit to my open-mindedness, whatever the context in which she is offering these services. If you want to call it prejudice so be it. I call it healthy skepticism borne of hearing dozens of false promises of cures/treatments for my son, not to mention various people I have seen for my own issues who charged me a lot of money, talked a big game, but delivered nothing.

So for now, I may consider the excellent suggestion to see if the "low" lab will retest to make sure there wasn't a sample issue. But if I can't get even roughly consistent lab readings, then I can't see placing much faith in this.

 

[alicec]

But if I can't get even roughly consistent lab readings, then I can't see placing much faith in this.

And even then be sceptical. By all means try B6 and zinc, just don't place much faith in the explanations for why these might be helpful. They don't hold up, as discussed earlier in the thread.

 

[Violeta]

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.

I would be interested to know what you do for antioxidants.

I take a number of the supps recommended for pyroluria. Before I started the B6 I took B2 for I am guessing several years. Adding in the B6 was a big help. I haven't read your entire paper yet as I had to work today and this evening has been busy, but I am looking forward to it.

Thank you

 

[Violeta]

I imagine most of the info in this link is already on your page, Dominic, but I thought I would link it for anyone interested.

Porphyria and pyroluria have a lot in common. Chlamydia pneumonia is often complicated with porphyria, and the porphyria is classified as secondary porphyria. I do wonder if secondary porphyria is actually pyroluria. Something to look into.

I have a friend with acute intermittent porphyria, and she kept telling me that my symptoms sounded like porphyria. I read a lot about it, but back then the only info you could get was from the porphyria association, and it was very lacking.

Many years later I realized that she was right, and went against everything I had believed about diet and nutrition, and starting taking small amounts of glucose when I couldn't sleep or had a headache. Glucose, LOL.

The B2 I Love You thread here at Phoenix Rising was a big eye opener and very helpful. It explains how the B2 regulates iron and also does something with zinc, although I can't remember specifically what it does with the zinc.
Following the directions in the thread helped with the porphyria symptoms, and it is needed for using B6 correctly. So I had a deficiency in both.

 

[Dominic Pukallus]

I was prescribed various forms of vitamin E, but I also chose to take huge doses of ascorbate (not ascorbic acid). I make it myself using this method, doing it twice a day or even more in (now rare) times of illness. I'm also a big fan of the powers of more natural antioxidants. Then there's the low inflammation-oxidation aspects of the ketogenic lifestyle I follow, not to mention the meditation and general stress management. I can't say it's all been due to B6 and zinc, though I had the most dramatic improvement when I started the Pyrrole Disorder/Pyroluria treatment.

I'm glad to see my hard work doesn't seem to be in vain. I'd love some feedback on possible weaknesses for further improvement, it's frustrating trying to explain things to those who seem unwilling to get acquainted with the basics.

 

[Violeta]

I was prescribed various forms of vitamin E, but I also chose to take huge doses of ascorbate (not ascorbic acid). I make it myself using this method, doing it twice a day or even more in (now rare) times of illness. I'm also a big fan of the powers of more natural antioxidants. Then there's the low inflammation-oxidation aspects of the ketogenic lifestyle I follow, not to mention the meditation and general stress management. I can't say it's all been due to B6 and zinc, though I had the most dramatic improvement when I started the Pyrrole Disorder/Pyroluria treatment.

I'm glad to see my hard work doesn't seem to be in vain. I'd love some feedback on possible weaknesses for further improvement, it's frustrating trying to explain things to those who seem unwilling to get acquainted with the basics.

I see I forgot the link in my last post. Here it is.
http://www.townsendletter.com/July2017/krypto0717_2.html

I have read this thread occasionally and am always surprised by the number of people who show up asking if pyroluria is a real thing and then taking so much time to write disclaimers about it. Why do they do that?

I was in a group that discussed B6 toxicity and brought up pyroluria, and someone started shouting at me. She wouldn't even let me talk about it.

If someone wanted to know what I thought about the extremely strange reactions to discussions of the various issues related to this group of symptoms I would guess that if the cause and solution to pyroluria were to be known and applied by many doctors and practitioners, the pharmaceutical companies would lose great amounts of money. There, I said it, and I'm sure I will get some sort of backlash.

So keep up the good work, and after I read your paper, if I have any thoughts I will be sure to come here and discuss them.

 

[Dominic Pukallus]

I see I forgot the link in my last post. Here it is.
http://www.townsendletter.com/July2017/krypto0717_2.html

I have read this thread occasionally and am always surprised by the number of people who show up asking if pyroluria is a real thing and then taking so much time to write disclaimers about it. Why do they do that?

I was in a group that discussed B6 toxicity and brought up pyroluria, and someone started shouting at me. She wouldn't even let me talk about it.

If someone wanted to know what I thought about the extremely strange reactions to discussions of the various issues related to this group of symptoms I would guess that if the cause and solution to pyroluria were to be known and applied by many doctors and practitioners, the pharmaceutical companies would lose great amounts of money. There, I said it, and I'm sure I will get some sort of backlash.

So keep up the good work, and after I read your paper, if I have any thoughts I will be sure to come here and discuss them.

And in forums dedicated to finding answers for conditions which are poorly understood or even disparaged in more formal circles, no less. Astroturfing, whether primary or secondary, can be seen as a factor but also people just get wedded to their beliefs and will reject anything which challenges them. I'm very much open to challenges, but there's a certain give-and-take here.

I have to say I was highly skeptical of this and only tried it as a last resort despite what I saw on Wikipedia and the like. That experience certainly was an eye opener and a disillusionment on Medicine and Science in general, one of the reasons I'm skeptical of what many people call 'skepticism', a glorious bittersweet irony which I'm glad I have the opportunity to savour.

 

[pspa123]

I just want some objective, consistent test data as a starting point for making a critical assessment for myself. I think that's pretty reasonable. So far, I have anything but. I have one lab that says I have this condition and one that says I'm not even close to what people sometimes call borderline.

 

[pspa123]

PS If I am "skeptical," part of it is that I have seen a hundred of these niche theories, all with their impassioned and articulate advocates, each of which purports to explain a large swath of maladies both physical and mental: methylation cycle defects, subluxations, blocked chi, Lyme, mold, mercury/dental amalgam, subclinical hypothyroidism, low testosterone, candida, vaccines, allergies, gut dysbiosis, and many more. With my rather vague set of symptoms and normal standard lab results I bet I could collect 20 different diagnoses and treatment plans within a week. So yes I do approach pyroluria with some skepticism, although I believe I started this process with an open mind.

 

[Dominic Pukallus]

I just want some objective, consistent test data as a starting point for making a critical assessment for myself. I think that's pretty reasonable. So far, I have anything but. I have one lab that says I have this condition and one that says I'm not even close to what people sometimes call borderline.

I can understand your need for personal experience of consistent data, that's perfectly understandable. As I said, this test is notorious for false negatives for the reasons I described and I won't go further into that. I expect, following the links I've presented in my articles, that with proper procedure followed you'll find out your true status one way or the other. I have to say that in my opinion my own consistent experience has been influenced by the fact my condition is fairly pronounced (15/20 is actually considered 'borderline' as far as Mental Health is concerned) so the potential for error is lessened.

You may find from your readings, if you chose to, that as I say HPL is only an indirect marker for any need for B6, zinc, etc and it's not exactly a linear relationship between the two. There has been recent published literature where the use of HPL as a marker for schizophrenia at least, and the link to that has been provided. I also recommend looking more into the paradigm of nutrient approaches to Mental Health and brain disorders through the work of Dr Walsh and his team, as Pyrrole Disorder/Pyroluria is only one of the identified syndromes which are proposed as being able to affect mood and brain function. That's what my website is dedicated to, though incomplete, and it may give you some pointers which could be beneficial to you and your loved ones.

All the best,
Dom

 

[Dominic Pukallus]

PS If I am "skeptical," part of it is that I have seen a hundred of these niche theories, all with their impassioned and articulate advocates, each of which purports to explain a large swath of maladies both physical and mental: methylation cycle defects, subluxations, blocked chi, Lyme, mold, mercury/dental amalgam, subclinical hypothyroidism, low testosterone, candida, and many more. So yes I do approach pyroluria with some skepticism, although I believe I started this process with an open mind.

You'd be surprised how many of these are interrelated from my own research, and while any one of them may affect health in its own way they are never isolated from what I've seen. Shit's complex, yo.

 

[pspa123]

Yes, it's complex, perhaps even to the point of being largely beyond our understanding, but unfortunately there are countless practitioners offering these niche one size fits and explains all diagnoses. Preconceptions and confirmation biases are rampant, in my personal experience and that on behalf of my son.

I recall one "LLD" who not surprisingly immediately decided I had chronic Lyme even though I don't have any of the "hallmark" symptoms. Test comes back negative, he says he doesn't believe it do this other more expensive one. That test comes back negative. He says he doesn't believe it, do this new and even more expensive one. At that point I said you know what dude, I am pretty damn sure I don't have Lyme, and moved on.

 

[datadragon]

The book Nutrition and Mental Illness by Carl C Pfeiffer, PhD, MD around 1975 is where Pyroluria came from. He was a pioneer in the field of nutritional research, treating psychological disorders such as anxiety and depression to phobias and schizophrenia using nutrition based treatments of diet and supplements that replace what is lacking in the body. He has such great success and then had opened the Brain Bio Center in Skillman, NJ, and the book has all kinds of information on the pyroluria history, symptoms and info from more then 10 years of their treating patients but later died. He is actually the one who also learned first about the negative effects of copper toxicity as well. Stressors to the body I found depletes Magnesium, Zinc, and B Vitamins such as B6, possibly due to the mag, zinc, and b2 needed for its conversion to active form but the amount needed is much less then pyroluria.

The pyroluria treatment in that book says B6 (do not exceed 2,000mg) until you have nightly dream recall. zinc 30mg morning and evening, and manganese 10mg morning and evening. So clearly it is more severe being a genetic defect. The book is on amazon new as well as cheap used for those interested in learning more about pyroluria.

Urinary excretion of pyrroles was first connected with psycosis in 1958 when a canadian dr payza noted a new substance in the urine of several patients undergoing experimental LSD model psychosis. The abnormal chemical found in the urine of those patients was later found in the urine of many psychiatric patients who had never taken LSD or any other drug. It says pyrroles bind to aldehydes and pyridoxal (B6) is an aldehyde. The bio center confimed that and also found that the complex of pyridoxal with kryptopyrrole took excess zinc out of the body. They treated over 1,000 patients with B6 and Zinc and coined the term pyroluria. This along with ApoE4 are the two main possible genetic connections to ME/CFS in my view of it.

 

[Hip]

This along with ApoE4 are the two main possible genetic connections to ME/CFS in my view of it.

Why? What evidence or theoretical reasons are there to link pyroluria genes to ME/CFS?

 

[pspa123]

General Pyroluria Symptoms and Signs
Abdominal pain
Always Sick
Amnesia spells
Anger - explosive
Argumentative - likes to argue
Constipation
Crying spells
Delusions
Difficulty recalling past events
Difficulty recalling people or names
Difficulty remembering dreams
Dramatic Tendencies
Dyslexia
Elevated eosinophil’s
Emotionally unstable
Fatigue
Feeling on edge
Fearful
Fear of air travel
Food sensitivities
Frequent colds, fevers and chills
Frequent ear infections as a child
Hallucinations
Hyperactivity
Hypersensitive to noise
Hypoglycaemia
Inability to think clearly
Insomnia
Intolerance to alcohol
Intolerance to drugs
Intolerance to some protein foods
Lack of regular menstrual cycles
Little or no dream recall
Loss of appetite
Loss of libido
Low tolerance to stress
Migraines
Mood swings
Morning nausea
Motion sickness
More energy in evenings than mornings
Nervous exhaustion
Nervousness
New situations causes stress
Not handling criticism well
Overwhelmed in stressful situations
Overeating
Paranoia
Pessimistic
Poor memory
Poor morning appetite
Preference for heavily flavoured foods
Preference for spicy foods
Reading difficulties
Seizures
Sensitivity to bright light
Sensitivity to smells
Severe inner tension
Social withdrawal
Splenic Pain
Substance abuse
Temper tantrums
Tendency to skip breakfast
Tendency towards iron deficient anaemia
Uncomfortable with new people
Uncomfortable with new situations
Vulnerable to infections

This is from conquering pyroluria.com
Lists like this do not persuade; who doesn't have many of these especially anyone with any stress, depression, fatigue or anxiety?

 

[Dominic Pukallus]

Yes, it's complex, perhaps even to the point of being largely beyond our understanding, but unfortunately there are countless practitioners offering these niche one size fits and explains all diagnoses. Preconceptions and confirmation biases are rampant, in my personal experience and that on behalf of my son.

I recall one "LLD" who not surprisingly immediately decided I had chronic Lyme even though I don't have any of the "hallmark" symptoms. Test comes back negative, he says he doesn't believe it do this other more expensive one. That test comes back negative. He says he doesn't believe it, do this new and even more expensive one. At that point I said you know what dude, I am pretty damn sure I don't have Lyme, and moved on.

I completely understand your frustration. Whatever an LLD is, I'm well familiar with even MDs who have their hobby-horses and see everything through that. Dr Klinghardt (not even sure if he's an MD or a ND) sees Pyrrole Disorder/Pyroluria (PD) through his Lyme glasses, Dr Lam (MD) sees it through his Adrenal Fatigue glasses, for others it's iron dysregulation, mercury, pretty much the slew you mentioned.

The Walsh Research Institute are pretty much the authorities on PD and the other related syndromes now, Walsh worked with Pfeiffer who worked with Hoffer and he inherited all the clinical data as well as continuing the clinical research work. This is why they (and Dr Walsh specifically) might seem to have a cult following, being the lone giants in the field. They get their funding as a charity, proceeds from Dr Walsh's books, and by training MDs in the protocols. They figure only MDs have the Biochem needed to apply the theory correctly. I'm lucky in Australia we have the highest number per capita of these wonderfully competent people otherwise I might have had your own problems.

I know you're wary of one-size fits-all, but my observations have led me to conclude that these modern "genetic" diseases are really triggered by what Walsh causes "environmental insults" which cause changes to the DNA or the epigenetic switches through oxidative stress (OS). These could be by pathogens, stress, or toxins, all of which play their part and may act in a cumulative or synergetic manner. Diet, lifestyle, and contaminants play a big part in this I see from my new perspective and is another reason I'm an antioxidant fiend now as a prophylactic.

I have a very dear friend who was struck down with ME/CFS due to a combination of all these it seems. Of concern especially is the repeated bouts of EBV she had which apparently has the ability to cause changes to mitochondria genes, as well as these genes being especially vulnerable to metabolic/toxin OS. Mitochondria dysfunction looms ever larger in my mind as a factor in CFS/ME, ATP being fundamental to body processes including nutrient metabolism. It would explain the surge/crash cycle, as ATP builds up during resting periods and gets depleted leading to the dreaded crash.

Anyhoo, I have things to do. I hope things work out for you.
Dom

 

[pspa123]

Lyme Literate Doctor. An MD.

 

[alicec]

This along with ApoE4 are the two main possible genetic connections to ME/CFS in my view of it.

Evidence please for both claims.

 

[pspa123]

It sure seems a lot of websites (most of which are the sites of practitioners who are not MDs) just repeat the same exact mantra about this condition?

 

[robinhood12345]

I'd say it is not real.