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The pyroluria fallacy


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Hypothesized in the '60s by Dr. Abram Hoffer, founder of orthomolecular medicine, pyroluria, a nutritional disorder, was respectfully investigated and discarded by everyone except some alternative practitioners.

 

From http://www.sciencebasedmedicine.org/pyroluria-and-orthomolecular-psychiatry/

 

....

I was recently asked to look into the claims for a disorder known as pyroluria.... There was some legitimate scientific interest in this alleged condition in the 1960s. Studies in the 1970s, however, discredited the hypothesis and it was discarded as a failed hypothesis. The published literature entirely dries up by the mid 1970s. But the originators of the idea did not give up, and continue to promote the idea of pyroluria to this day.

 

The story is told by Dr. Abram Hoffer himself, the originator of the pyroluria hypothesis. It started with a reasonable idea – since LSD mimics some of the clinical findings of schizophrenia, perhaps we can learn something about the biology of schizophrenia by studying the effects of LSD on the body. He specifically looked at the urine of patients given high doses of LSD before and after treatment. He found an increase in an unknown substance. As Dr. Hoffer recounts:

At first we called it the unknown substance (US), and later the mauve factor because when developed on the paper chromatogram it stained a beautiful mauve. When it was identified we called it, more accurately, kryptopyrrole. We named the disease characterized by large amounts of mauve factor “malvaria,” but Dr. Pfeiffer later gave it the more appropriate term pyrolleuria.

 

 

He goes on to recount how he and his team found kyrptopyrrole in the urine of patients who are physically ill, those with depression and other mood disorders, and schizophrenics, but not in healthy controls or recovered schizophrenics. So far this all sounds reasonable. It was later found that kryptopyrrole excretion relates to levels of vitamin B6 and zinc in the body, and therefore schizophrenics can be successfully treated with vitamin supplements.

 

There is nothing implausible about nutritional or biochemical disorder presenting with psychiatric conditions. In fact, acute intermittent porphyria (also believed by Hoffer to be related to kryptopyrrole) is a known biochemical disorder that presents as acute episodes of psychosis (the movie The Madness of King George relates the story of King George III’s bouts of this disease).

 

Schizophrenia is a debilitating disease and it would certainly be very nice if we could cure it (or even a subset of cases) with a vitamin supplement. That is not, however, how the science turned out. Unfortunately, science does not always conform to what we wish to be true.

 

Pyroluria (which has various spellings, but this seems to be the most common in current use) did not survive replication. A number of studies in the 1970s failed to confirm the presence of kryptopyrrole in the urine of patients with schizophrenia or prophyria. For example, Gendler et al found no hemopyrrole or kryptopyrrole in the urine of healthy subjects or schizophrenics. Jacobson et al found similar negative results.

 

The pattern is ....a string of negative studies in the 1970s followed by the complete disappearance from the peer-reviewed literature, except in journals dedicated to the now fringe idea. In this case Hoffer decided that he was not the victim of a failed hypothesis, but rather the victim of a conspiracy of mainstream psychiatry that was simply closed to his revolutionary ideas. He founded the journal Orthomolecular Psychiatry, now the Journal of Orthomolecular Medicine – a fringe journal in which he could continue to publish his ideas.

 

I also looked for research on the related but distinct question of using vitamin B6 to treat schizophrenia. If there were any clinically significant effect it should be easy to demonstrate in clinical trials. I found a few double-blind studies and they show two things: Vitamin B6 has no benefit on psychotic symptoms of schizophrenia, but it may have benefit for motor symptoms – specifically Tardive dyskinesia and Parkinsonism as a side effect of anti-psychotic medication. So B6 does not treat schizophrenia itself, but may reduce the motor side effects of medications used to treat schizophrenia. Perhaps this effect is what has led to anecdotal observations of improvements in schizophrenic patients from B6.

 

Hoffer, in his telling of the tale, has this revealing passage:

Since schizophrenic patients, most of whom had the factor in their urine, responded better when treated with vitamin B3, I concluded that any psychiatric disease, no matter what they were diagnosed clinically, might also do better with this vitamin. This was confirmed by a large series of open clinical studies. I will not term these studies anecdotal, which has become the politically correct term for denigrating any studies that are not double blind, since all clinical studies depend upon the history or herstory of patients and how they respond, i.e. upon anecdotes. The only difference is that in double blind studies the anecdotes are collected by physicians or others who are blinded by not knowing what treatment is being given. At least this is the theory of this type of procedure. In fact, the vast majority of these studies are so imperfectly blinded that few clinician or nurses have much difficulty deciding whether the patient was on placebo or something more active.

 

Worshippers of the double blind remind me of the emperor whose nakedness was seen only by a child not yet blinded by tradition. This report by Kraus is an excellent example of the type of anecdotal history which has contributed so much to medicine.

 

 

The denigration of double-blind studies and the holding up of anecdotal information as reliable is a sure sign of someone on the fringe, not wishing to listen to the scientific evidence but rather to pick the evidence they want to use because it better suits their theories. We have discussed the weaknesses of anecdotal information many times in the past. Anecdotes are overwhelmed by bias and uncontrolled factors. At best they can be used to generate hypotheses, but not to test them. We need double-blind studies to see if alleged effects are real. There is a kernel of truth in what Hoffer says in that not all studies reported as double-blind are reliable, and imperfect blinding can be a major, and often hidden, weakness of clinical trials. But he misses the point in his criticism.

 

First I need to point out that the “only difference,” as Hoffer claims, is not that the physicians are blinded – the subjects are also blinded (hence double blind). This is critical to controlling for biasing effects. But also the point here is that while anecdotal reports were positive, well-controlled double blind studies of pyroluria (biochemically and clinically) were negative. You cannot explain this pattern of results with improper blinding. Improper blinding causes false positive results – not false negative results, so Hoffer’s objections make no sense. The better controlled studies were negative, that pattern strongly implies the null hypothesis, in this case that pyroluria does not exist as a legitimate entity and vitamin B6 is not an effective treatment for schizophrenia (although it may help reduce the motor side effects of medication).

 

....

Hoffer has had 40 years to do more and more rigorous research, to produce the data that would convince even a skeptical mainstream scientific community that his ideas are correct. If he truly believes that he is right, then this is the path that would help the most patients by changing the standard of care. Rather, he formed his own fringe journal and fringe community where he can brood about the conspiracy of mainstream psychiatry and rail against the dogma of rigorous scientific research.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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  • 4 months later...
  • Moderator

Mensah claims to have updated his approach from Hoffer.  That Hoffer was a pioneer, but still more needed to be done.

 

I saw this somewhere else, too, on the "niacin for schizophrenia" studies....(sorry, references are fleeting)

 

I'm not saying it's not fringe, I'm just saying that people are taking up where he left of, and claiming to "improve" on his original, somewhat flawed techniques.

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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If anyone can post recent studies and replications of studies that provide a foundation for "pyroluria," please add them to this topic.

 

Unsubstantiated claims from Mensah are not sufficient.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator

Oh yeah, it was an interview with Walsh. Biased sources, I'm sure.  I fear I don't put as much stock in studies as you do, whether they are for or against - they are just as biased as opinions.  A few are done in the genuine cause of science. maybe 15%?  

 

I will add that when Peter Gotzscke was here, someone in the audience asked about Pyroluria, and he snorted, said he'd never heard of it.  He also commented that homeopathy and acupuncture "don't work."  (I disagree with his opinion of acupuncture, but ok - he's a man of science and studies.)

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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  • 1 year later...

 So B6 does not treat schizophrenia itself, but may reduce the motor side effects of medications used to treat schizophrenia. Perhaps this effect is what has led to anecdotal observations of improvements in schizophrenic patients from B6.

 

Oddly enough I now have a movement disorder.  I have tried B6 many times and every time I get very depressed.  If I were not as experienced with depression and all this crap including reactions... that are severe I would have headed to a hosp... and been diagnose with a major depression it is creepy what B6 can do to me.  And only one dose it is like magic or poison to me.. you pick the word. 

 

I often wonder what is messed up inside my systems that B6 causes such a reaction. 

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

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  • Moderator

So I was diagnosed with "pyroluria" by my orthomolecular doctor, about 2 years ago.  It's the "diagnosis du jour" among natural practitioners here in Oz right now.

 

I've hesitated to talk about it here - but - after the diagnosis, I was given the treatment (B6, niacin), and I got better.

 

So it may be an indicator of something, and it may help to take B vitamins to repair it - and there's a part of me that wonders if I've had this methylation / pyroluria condition most of my life.

 

So - I can't prove it - I can only say that treatment for pyroluria helped me - whether it is a real condition or not.

Btdt - there are a few pages on Facebook that talk about B6 toxicity.  So it may be easy to hit.  I know that when my dreams are screwed up, to adjust my B6.  Dreamless = increase, BAD dreams (really bad dreams) = decrease.  What this has to do with "pyrrholes" in my urine, I couldn't tell you.

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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  • 1 year later...

Hi I have not taken a test for pyroluria but my friend recommended an orthomolecular doctor who mentioned it as a possibility. Boy did that worry me. However she said the solution was zinc supplementation, I did not hear anything about B vitamins?? So I’m confused. Jan were you diagnosed during withdrawal? I am aware that pyroluria is considered a fake diagnosis by most mainstream doctors and hasn’t seemed to hold up logically buuut because this doctor came highly recommended by a friend I wonder if I should try. Random people seem to have benefited from whatever the course of treatment was. Of course the test costs in the hundreds. 

29y.o.  Started Lexapro, 15mg in 2013 for anxiety and depression.

9/28/15- Started taper, went down to 10mg, then 5mg by 10/31/15. 

1/2016-  anxiety, nausea, fatigue, crying spells, sadness, by January. Reinstated back to 10mg.  Leveled out.   1/1/2018- Began further taper, down to 0mg by 1/31/2018.  Last dose was 2.5mg. Feelings of dizziness during taper recommended by pdoc.  Slowed down taper, but still had symptoms of stomach upset.

2/12/18 - Dealing with symptoms of dizziness, anxiety, sadness, stomach upset.  2/20/18 - Reinstating medication with .6mg.  2/21/18 - Emotionally feeling better.  Dizziness much improved.  2/24/18 - Went to sleep with extreme feeling of chills.  No fever.  Fatigue.  3/19/18 - Increased anxiety.  5/1/18- Began therapy.  Have trouble with anxiety and GI symptoms.  9/22/18 - Decrease to .5mg.  Anxiety, GI, chills.  9/26/18 - back up to .6mg.  10/31/18 - app Curable, feeling distinct change in outlook and anxiety levels decreased.

2/1/19 - not seeing improvement in anxiety.  started 10mg Prozac  2/7/19 - up to 20mg Prozac, experiencing chills, tiredness  2/21/19 - tapering down to 10mg

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  • 3 years later...

This discussion of ‘pyroluria’ piqued my interest. I was a family friend of the late orthomolecular psychiatrist Dr. Abram Hoffer in Victoria BC Canada, though I was never his patient. His son, the late Vancouver antiquarian bookseller William Hoffer published my first book, in 1978.

 

At family table, we often talked about LSD. We young hippies saw its potential long before. Abe was no charlatan. His vitamin regimen worked for many of his own patients.

 

More recently Australian amino acids consultant Trudy Scott, author of The Anti-anxiety Food Solution, hosts a pyroluria questionnaire. I do know that lab tests for kryptopyrroles cost hundreds of dollars. None of the aminos have noticeably improved my condition.

 

I am unsure whether Hoffer (Niacin) or twice Nobel Prize-winner Linus Pauling (Vitamin C) were the first medical advocates for megavitamins. I am neither a believer nor a disbeliever; I try to keep an open mind. Even placebos work for some people.

 

What is true is that most people in the modern world are massively deficient in many essential nutrients. Many of these nutrients have proven efficacy in some patients for depression & anxiety. Curcumin? CBD? Herbs? I self-inject Vitamin B12.

 

Most people don’t think twice about their diet. Even if they did, most of us cannot afford to go all organic.

 

Why are there no quintuple-blinded studies of nutrition & supplements. Come on! Money, honey! There’s no income in this for pharma. We all here are victims of their poison profits.

 

We’re still finding out about the relationship of the gut microbiome to our mental state. It’s being taught in shrink school today. Gluten-free, dairy-free, fermented foods, probiotics? We’re drowning in unsubstantiated anecdotal opinion. Placebo? Perhaps.

 

Science is wonderful, capitalist pharma not so much. One can say nobody knows how orthomolecular ‘medicine’ works. Well, nobody knows how these addictive mind drugs work either. All our systems are interconnected.

 

Another dismissed 'alt-med' condition is Adrenal Fatigue Syndrome. This is low cortisol not high. Would sure be a convenient spot to pin our depression / anxiety / sleeplessness & more. Zinc is used clinically in critical care to suppress cortisol.

 

So…don’t bet the farm on these. Do your research, don’t go crazy buying supplements, don’t pay big money for useless labs, don’t sign up for endless summits & Internet docs trying to sell you stuff.

 

If you decide to try the pyroluria or niacin protocols, please take a high-potency B-complex so as not to unbalance your bees. And see the caveats on B-complex. I have read here on SA it “can be activating, cause insomnia, etc., esp in a nervous system which has been through a recent taper or other psych drug changes."

 

Be well.

 

 

CJ

Bangkok

Doc is not God spelled backwards!

 

Mirtazapine 30mg 2003-February 2022

Vortioxetine 10mg December 2021

Quetiapine 12.5mg - 25mg - 50mg - 75mg January-March 2022

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Alprazolam 1 mg August 2019-present

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