You can’t find it in WebMd. One website lists a good number of studies, few of which are found in PubMed. It’s called pyroluria.
It’s a “fringe disorder” that has gotten little or no traction in traditional medical circles. Is it real? Some scoff. Other orthomolecular doctors, nutritionists and alternative health practitioners believe it’s a real and underdiagnosed disorder.
Pyroluria has only begun to be recognised as a medical condition for about 10 years now and many health practitioners are still not taught about it in school. Due to a lack of knowledge, awareness, research, and complete acceptance within the mainstream medical profession, unfortunately most people with Pyroluria go undiagnosed. On a positive note, I am continuously becoming aware of more and more doctors and psychiatrists worldwide accepting the validity of Pyroluria and changing the lives of those suffering from mental illness. Though without proper identification and treatment, those affected tend to become loners in order to avoid stressful situations in life. Their lives become an ongoing struggle to protect themselves from too much emotional and physical stress.
Cause
Pyroluria is purportedly caused by problems in the synthesis of hemoglobin – the protein that binds iron in red blood cells. People with this disorder are believed to produce too much of a byproduct of hemoglobin synthesis called hydroxyhemopyrrolin-2-one (HPL).
This byproduct is then believed to bind to Vit B6 and zinc which are then excreted out of the urine – making pyroluria essentially a disorder of Vit B6 and zinc depletion. Low B6 levels were tied to chronic inflammation in a large Framingham Offspring study.
Pyroluria is strongly associated historically with Dr. Carl Pfeiffer, a founder of “orthomolecular psychiatry” in the late 1960’s. Pfeiffer treated mood disorders with high doses of megavitamins.
Proponents link it to many mood disorders (bipolar disorder, Aspergers, OCD, schizophrenia) as well as ADHD, alcoholism, autism, epilepsy, multiple sclerosis, Parkinson’s, MS, schizophrenia and Lyme disease. Several studies, however, failed to find increased incidence of pyroluria in schizophrenia.
Symptoms
The symptoms suggest, that if real, pyroluria could be something of an ME/CFS/FM mimic like POTS, hyperparathyroidism, hypothyroidism, multiple sclerosis and others. It’s not particularly associated with fatigue, but other symptoms, particularly the poor tolerance of stress, mood swings, sensitivity to stimuli and pain associated with it resonate. According to several websites pyroluria produces:
- poor tolerance of physical and emotional stress
- “nervous exhaustion”
- mood swings
- depression
- noise and other sensory sensitivities
- pain
- seizures, even complete physical debilitation.
- sweet, fruity breath and body odor
- excessive reactions to tranquilizers, barbiturates, alcohol, or other drugs, in which a little produces a powerful response (low vitamin B6)
- motion sickness
- pale skin or burning easily in the sun
- little or no dream recall
- problems with sugar metabolism, allergies.
- low tolerance for protein – tend to favor vegetarian diets
Testing
The disorder is detected via urine analysis using “the mauve factor.” Persons with 10-20 mcg/dl are considered “borderline”pyroluric and may benefit from treatment. Persons with levels above 20 mcg/dl are considered to have pyroluria, especially if they’re symptomatic. Various labs offer the test. It was $80 at one lab.
Treatment
Treatment results reportedly, often occur quickly, but can take several weeks to months to take effect, in people with severe pyroluria.
One website recommends
- Vitamin B6 – 200mg Pyridoxine hydrochloride and 50mg P5P. Smaller doses of P5P (20mg) every 3-4 hours may be the most effective. P5P is a water soluble vitamin. Tea and coffee will deplete it. (Too much B-6 can cause nerve damage, difficulty walking and/or tingling associations).
- Zinc picolinate – anywhere from 50 – 100mg for severe adult cases, taken in the morning after food. Zinc dosages should be built up slowly in accordance with blood labs results for Zinc/Copper/Ceruloplasmin levels, HPL results, and general vitality/adaptive ability to cope with chelation.
Other nutrients that may be helpful include manganese, magnesium, vitamin B complex, biotin, omega 6 essential fatty acids (arachidonic acid in particular), 5-HTP, Vitamins A, C, E, glutamine, Gamma Amino Butyric Acid (GABA), taurine, inositol, glycine.
Sugar and carbohydrates should be avoided. Digestive problems may have ensued from the condition that need to be addressed.
Wrapping Up
Pyroluria has been largely rejected by the traditional medical profession. Is it a real disorder that has been wrongly dismissed or a figment of some doctors imaginations? If you’ve been tested for pyroluria, and were found to have it, let us know if the treatments helped.
Resources
Video’s
Check out other videos in the Media section of the Health Rising Forums including one story of a woman overcame years of depression after being treate for pyroluria.
Websites
- Vitality and Wellness Center
- Integrative Psychiatric Center
- Pyroluria Questionnaire
- A Hidden Disorder
Health Rising is not affiliated with any labs or doctors or websites mentioned in this blog
So glad you shared this topic because it does need more exposure!
I noticed that in the “Treatment” section where B6 & zinc are listed, right beneath there is a paragraph about additional supporting nutrients, but a key one was missed, & that is Evening Primrose Oil (EPO) as a source of GLA (a certain type of fatty acid). This was mentioned briefly in the video.
Many people will not see improvement in pyroluria symptoms until the EPO is added. I supplement with B6, zinc, EPO, Mg, biotin, glutamine, GABA & inositol. Plus, I make sure to get enough of the important vitamins A, C, E in the foods I choose to eat.
Dear Cort,
I was diagnosed with CFS 30 years ago. With my fatigue getting worse and associated problems with Anxiety and Depression I recently sort the help of an Integrative Physician (a doctor who is also a naturopath). The first tests he requested were those of MTHFR and Pyroluria.
I was found compound heterozygous for MTHFR and my Pyroluria result was 50.4 (very convincingly positive).
I was almost lounge bound with only a few hours a day of activity at this point. Since starting on a Pyroluria Primer supplement my energy levels have increased by about 30-40%. I am now active most of the day, requiring only a couple of hours rest. I have never in all my years of being diagnosed with CFS (I had a severe bout of Glandular Fever and Hep A) had such a quick and noticeable response from any protocol I have trialled. I have read that B6 deficiencies can cause muscle weakness and fatigue in my research and I am convinced that this has been one of my issues.
I am not “fixed” …still far from it but I at least now have a semi-functional energy level that has allowed me to get up of the lounge and live a little. I would strongly recommend anyone with CFS that has associated mental health issues be tested for Pyroluria. I have also benefited from a small decrease in anxiety levels.I am a believer…and really…what have you got to lose?
That’s Nicki – it shows what can happen if you continue to turn over all the corners. Thanks for sharing that!
If I don’t take multi vitamin bs I get depression bad and I also take b12
As mentioned in one of my previous posts… My friend and her daughter…were both diagnosed with pyrroluria and both benefitted greatly from the recommended supplementation and dietary changes.( I will be Having my daughter tested soon as I had sort of ruled it out after reading the huge range of possible symptoms for Pyrroluria which she did not have…….but as per one of the above comments….CFS may be a sign of such a metabolic misfunctioning!)
The word “pyroluria” is made up, it’s fictitious. Substituting pyrrole (two R’s) in a PubMed search produces thousands of journal articles.
Perhaps reading about heme synthase — here: https://www.rpi.edu/dept/bcbp/molbiochem/MBWeb/mb2/part1/heme.htm#pbg —
would be helpful.
There are a whole handful of enzymes which have something to do with pyrroles and/or pyrroloquinolilne. These are some of them:
D-glucose:(pyrroloquinoline-quinone) 1-oxidoreductase
1-pyrroline dehydrogenase.
Pyrroline-5-carboxylate dehydrogenase
Pyrroloquinoline-quinone synthase.
Pyrroline-2-carboxylate reductase.
Pyrroline-5-carboxylate reductase
Tryptophan pyrrolase
Pyrrolooxygenase
Pyrrole-2-carboxylate monooxygenase.
Pyrrolidone-carboxylate peptidase.)
1-pyrroline-4-hydroxy-2-carboxylate deaminase.
Pyrrole-2-carboxylate decarboxylase
Pyrrolysine–tRNA(Pyl) ligase.
The problems that are described in so-called “pyroluria” sound sort of like porphyria. There is an entrenched belief that the porphyrias are all genetic; that is, by way of Mendelian inheritance. But maybe that is not entirely so.
Say what you like about pyroluria being fake. I had an autistic son who had to be homeschooled because he couldn’t cope in a classrom. He would have meltdown after meltdown and his life was a misery. One of the worst things was his chronic sound sensitivity. He would slam his hands over his ears at loud sounds. He was also very fatiqued due to poor wuality sleep with no dream recall. He was tested for HPL levels in his urine with a v. high score. Within days of treatment his sound sensitivity disapeared and he started waking up refressed being aware of dreaming. He was a different boy. I guess you call that placebo! Has to be of course. Lng story short he is no longer on the autistic spectrum. We paid a heck of a lot of money to get him assesed privately by a specialist in the field of autistic spectrum diagnosis. He was 10 years old and failed facial recognicion tests an ordinary four year old should pass with flying colours. There is little doubt his diagnosis was incorrect. Vitb6 and zinc cannot be patented. Those areas of the medical world backed by pharmaceutical companies are hardly likely to be in a hurry to back pyroluria.
Amazing story! Thanks for sharing that and congratulations. I wonder how many kids are missing the help they could get.
Pyroluria as a name has not propagated through the system the way Pyrrole syndrome has. Because the terminology is new, he is calling it fake. All words are created words, and Pyrrole syndrome is simply more useful in finding information.
The poster didn’t mean that the condition is fake, but that the terminology is fake because you cannot get information using it. Obviously, since he listed or she listed so many different chemicals involved in it, they know the condition is real. I believe that the new name was trying to get it more recognition, but it’s not succeeded yet.
Clarification, they pointed out that the word is made up, and had not previously existed, they did not make claims about the existence of the condition. And even offered a closely related term that would provide medical results and information that might be helpful.
Pyroluria and orthomolecular medicine are quackery, and «doctors» providing these fake diagnosis are only milking desperate (and naive?) patients, not giving them anything more than what the placebo effect provides. No wonder many serious researchers and physicians shun the ME/CFS field if the patients jump on every illusionary bandwagon like this.
Professor and neurologist Steven Novella correctly states that «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.»
https://www.sciencebasedmedicine.org/pyroluria-and-orthomolecular-psychiatry/
I’m not sure that pyroluria is real either, but having said that, the “Science Based Medicine” website is really a farce.
It should be retitled “Pharmaceutical Drug Based Medicine”, as it consistently denigrates ANYTHING that isn’t a drug.
Talk about “milking desperate (and naive) patients. The drug industry has mastered that without providing a cure or even semi-permanent remission almost any illness.
It works. Just B6 and zinc, with arachidonic acid from peanut butter ( which as a result of the B6 and zinc, he no longer craves in excess), and my ex roommate has gone from being a royal pain in the behind to a friend.
He was able to move on his own, the previous two moves, he would not have been able to move if he had not gotten help, and in moving next door, he did it almost totally on his own.
In the process, he lost his B6, and after a few days, I called him on it. He was embarrassed to admit he lost it, and had immediate Improvement. Then he lost his zinc, and it took one day for me to catch him on it.
Then he missed a multivitamin, and it took a day for me to catch him on it.
Now, when he misses his medications, he is completely unable to learn anything. He was trying to understand how wi-fi boosters work, and how one pays for WiFi, and it was impossible to get through to him after 6 tries. When I called him on missing his B6, and provided him with some, he took it and fell asleep as his body grabbed a hold of it and wanted to work on that more than it wanted to work on Consciousness.
3 hours later, he woke up, and I didn’t finish the explanation, the same one I had done over and over, before he got it. The look on his face when I had tried to do it in person, this hurt looked when I simply couldn’t explain it well enough, reminded me of how he had acted before he started treatment.
We haven’t done anything but adding zinc and B6, and I made him start multivitamin years ago. I told him then he needed sink, because his eye pressure had gotten too high, and the multivitamin brought it in line in 3 days. But he needs more zinc and B6 than a multivitamin has. Yesterday, he decided to start magnesium, and we’ll see what happens next. If we could afford formal treatment, we would get it, but even just a minor suggestions of a few nutritional additions is huge.
I now know two people who have pyrrole, this friend has mild Asperger’s, and the other has a daughter who has severe autism. When zinc is low, and they add folic acid to the diet of the mother carrying the child, the folic acid seems to prioritize the zinc away from building the child’s brain. They have recently found that adding zinc to the diet of young autistics improves. I’ve been saying that as a possibility for a decade, now they’re doing studies. That’s the same reason why metformin, an antifolate, is beneficial with coronavirus, because it has few other nutritional depletions, which most medications have if only because they require nutrients in the body to function, and it is long-acting. It increases the amount of zinc prioritize to the immune system because it doesn’t have folic acid to work with, that’s how it helps control Coronavirus.
That makes it likely that people with pyrrole are dying more from coronavirus, just as men are dying at a rate of approximately 2.4 times women, because zinc is being used in the testes and to make testosterone. Testosterone is necessary for men’s muscles to be the way they are, different from women’s, just like with horses, and that prioritizing of zinc to keep the body functioning at normal or close to it is likely why men are dying more.
Nutritional deficiencies from medications, as recognized on St Luke website in Kaiser Washington website, are known to cause mental illness, look up iron deficiency mental illness, and ICD Code E71.46 together with PMID: 24282920 for low l-carnitine from hemodialysis and valproate treatment, Depakote depakene and divalproex acid, and mental illness. The letter starts with, rarely diagnosed. I brought it to my psychiatrist attention. Due to the more than a handful of nutritional deficiencies caused by Depakote, all of which caused mental illness, my mental illness reduced significantly, majorly, as soon as I stopped taking Depakote. It improved it initially, but the nutritional deficiencies that crept up made it worse over time.
Most antidepressants green magnesium, and one of the side effects of chronic magnesium fatigue his depression. The medications work, they just need to fill in the nutritional deficiencies – if they don’t have a condition which is directly treatable. Please look at https://www.walshinstitute.org/biochemical-individuality–nutrition.html; so far, four of these have been experientially proven on me and those around me.
Once, a doctor told me I wasn’t in pain. And I doctor told me that I wasn’t seeing anything, over a year-and-a-half later, stopping antibiotics, they were able to photograph it. So feel free to scoff, but I will stand by my experiences.
If you find it does not work for you, then it means you don’t have it. That doesn’t mean that nobody else does. That’s why the Walsh Institute describes that page as, biochemical individuality. Because as individuals, we are different, and what works for one of us will not work for everyone.
E71.43, not E71.46; typo. My psychiatrist accepted this and PMID: 24282920 as valid.
She told me that the most brilliant person she knew, one of her teachers in psychiatric School, describe psychiatric medications as neurotoxins with beneficial side effects.
If doctors thought of it more that way, they might respect the damages that they cause more. Low l-carnitine prevents the cells from moving fatty acids from outside the cell to the mitochondria. It acts like a shuttle or Ferry. Without that, swelling does not reduce. One dose of L carnitine, when I’ve been forgetting it because I had Dental infection brought the pain down from 10 to 0.5, and the physical swelling down accordingly. That was when I knew that I had to do something about the Depakote, because I could not replenish all the nutritional deficiencies. Even the Kaiser Washington website, when I searched replenish nutritional depletions Depakote, did not list chromium, and yet chromium turned out to be very important for me while I was on it. It got rid of cravings and allowed me to lose weight.
Heaps of people have benefited from being treated for pyroluria, and that is enough evidence.
I came across research years ago by a Dutch doctor that found that about ten percent of caucasians have a polymorphism that affects metabolism of pyridoxine into pyridoxal. This reduces the amount of active B6 in the body, which among other things can affect zinc metabolism. Combine that gene with a systemic illness like m.e. that depletes the body of pyridoxal and you can get pyroluria.
The skeptics don’t get that just because there is not a scientific explanation that satisfies them, it does not mean that it is not happening in the real world. The best evidence is a mountain of clinical and anecdotal evidence.
I went to the Pfieffer center in Chicago about 20 years ago and they diagnosed me with this.
Whether this is a “real condition,” I don’t know. But I was interested because I already knew that supplementing B6 was helpful to me.
I first found out after I started on birth control pills and began having mood issues. My conventional doctor at the time suggested supplementing B6, and it did make a difference.
I don’t seem to need it now, but when I was unknowingly being exposed to mold, I needed a whole lot of B6 (preferably the P-5-P form).
So I am going to suggest that perhaps the stress of toxicity drains a lot of this nutrient for some people.
I have periodically taken zinc. At one point after moving out of the moldy house, I found that supplementing with large amounts of zinc prompted a detox response (similar to supplementing B12 and methylated folate).
So again, there seems to be a toxicity link.
I don’t see any reason why anyone should object to the idea that toxic exposures can cause some people to need more of certain nutrients. More research is needed.
With regards to ME/CFS: I think this is a disease of toxicity and that the depletion of various nutrients related to helping the body to address toxicity should be expected.
Which is not the same thing as suggesting that supplementing those nutrients is going to be enough to fix the illness – maybe just help a bit.
i don’t understand the testing for this alleged illness. What does 20 mcg/dl mean? 20 mcg/dl of what?
After all my years with CFS and being told it’s not real I’d never tell someone with any kind of misery that their symptoms aren’t real. Even if something happens to be hypochondria the person should be treated with dignity and helped to overcome their problem, not dismissed as someone making things up. I also feel like many docs will simply dismiss someone if they can’t figure them out, which doesn’t mean they don’t have some real disease or disorder – we’ve been all through that!
I learned of Pyroluria from GAPS forum. I took the online questionnaire, ordered the supps. Within 5 days, my whole mental landscape changed. Form feeling absolutely overwhelmed by my illness, un-ending negative thoughts, to saying to myself, hmm, this is an interesting challenge. I used P5P for 2.5 years, until things shifted in my biochemistry and I now don’t need any in addition to my activated B complex. I’ve never had lab tests for this.
http://www.hputest.nl/ewhat.htm
http://www.klinghardtacademy.com/images/stories/powerpoints/hpu 2009.pdf
Hi ahmo, can I ask what supplements and dosages you took please as I have a lot of the symptoms too. Many thanks in advance
Hi! I also want to know what supplement. P5P is B6, right?
I do believe pyroloria is a ‘thing’. I was tested for it, found to have high levels of whatever-they’re-called-again, and began treatment after finding a practitioner. Unfortunately, I didn’t see quick results, and I can’t say I ever really have (I may be wrong there; my memory is so bad. Maybe I did see some results, in the same way I see results for so many things which, after giving some respite, throw me back into CFS land again.)
But I’ve come across quite a few people online for who it IS an amazing turnaround, especially with scary mental illness symptoms. I definitely think there is something to it. Even the family trait aspect – when I first found out about it I was a bit evangelical. I could see my whole family in the symptoms, the high copper, etc. My brother was tested and found to be positive as well. He started on zinc, had a bad reaction to it (probably high copper, not balanced with other things to help its easier leaving of the body) and so he stopped. No one else wanted to know. I guess I’m probably not the best advocate for these things – I’m forever claiming I feel a lot better because of [insert latest thing] only to fall back again afterwards. So frustrating.
One symptom I didn’t see on the list is stretchmarks. I first noticed them when I was a teen-ager, and I had never been overweight or lost weight. I have many of the other symptoms as well.
Mary,
I have seen people discuss Lyme disease and say that, frequently, there are co-infections.
One of the co-infections frequently mentioned is Bartonella.
If you will do some reading — (just do a web search for Bartonella and strech marks) — you can think about whether that might possibly explain what happened to you.
Pyroluria is interesting as is hypercupremia and hypomethylation or hypermethylation. Aminoacidopathies tend to be underexplored in chronic conditions.
I don’t know if Pyroluria is a ‘real thing’ or not and I don’t really care. For the last 7 years or so, I have had a progressive deterioration in my physical and mental health for no obvious reasons. It began with a bout of Epstein Barr and from there to food intolerance and allergies to most of the major foods groups; severe malaise; brain fog and confusion; depressive episodes triggered by consuming these foods groups; gut inflammation, spasming and burning.
Whatever condition it is that I have it has left me unable to function properly on a daily basis and destroyed my career as working is difficult when you can’t think clearly or deal with basic stress.
I am a PhD in the social sciences, so I am no slouch when it comes to the scientific space. I have used my research skills to read widely to try and learn and resolve this for myself, but the current paradigm does not adequately explain my situation.
I have also seen competent doctors for years and mostly modern established medicine has had little to offer me at all. So, I have been ‘forced’ to look outside the box out of necessity and decided to see an integrated GP. Among other things, he suggested we tested for Pyroluria – I was a little skeptical, but because I was desperate, went along with the test. Surprisingly, results suggested I had Pyroluria.
I was prescribed Zinc primer P5P, magnesium and GLA. Remember that I have suffered from these symptoms for many years, so the fact that I had a dramatic increase in well being and virtual dissapation of my neurological issues seemingly overnight (brain fog, depression, irritability) is a life save for me.
So, I don’t care if there is a condition called ‘Pyroluria’ or not. I only care that I have gotten a good result. That is a lot better outcome for me than a Placebo! Pyroluria may not fit the mainstream medical paradigm, but if you take the time to go onto FB and read the accounts of 100s of people with stories of recovery, that kind of evidence at least warrants further investigation.
But, there are many obstacles to this, including the fact that medical research funding would not be diverted because it doesn’t fit the paradigm and findings wouldn’t be able to be ‘exploited’ for profit because the treatment is so simple. That is not me being cynical – it is just a fact.
So, that is my story.
Wow….Thanks for sharing Chris….and congratulations 🙂
Hi Chris, can I ask the name of the doctor you saw please? Many thanks
Thanks so much for sharing Chris – this has confirmed the journey im on + finding answers .
Thanks Cort.
I am just grateful that I am feeling a lot better. It is a big struggle for people with conditions similar to mine, especially when there is no label to put on it.
I was recently diagnosed with Pyroluria. I had a urine count of 27.5 so I was severe. I am also copper zinc imbalanced. I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. I had constant vertigo, extreme light and sound sensitivity, sensory processing disorder problems that were so uncomfortable I would beg god to let me die. My body aches and couldn’t turn my head without severe symptoms. These are not symptoms that are easy to fake. I could never dream them up and would have done anything to change them. All of this after my third child was born trying to breastfeed and survive, and it’s a wonder I did. The saddest thing is how the healthcare system didn’t help at all. I was incapable of seeing, walking straight, or talking right some days but yea… not serious enough. I tried so hard to get help and they didn’t seem to care. So I was forced to an FMT; my last resort. Once diagnosed with severe pyroluria I started supplementation and had very quick results. I immediately had changed in functioning and energy. I can work now. My brain damage will take time but even that has improved greatly in only 3 weeks of treatment. And why do I write this?? Because this illness is REAL, and if I can save ONE person from that hell I will.
Thanks so much for sharing your story – this illness is very real – finding answers through people like you sharing is so helpful , all the best
I was diagnosed with pyroluria by a naturopath specialising in allergy management in January of this year, and placed on supplements to treat it. I was sceptical, due to what I had read about pyroluria online, but also desperate. I had recently been diagnosed with arrhythmia, I had been sympathetic dominant to the point of hypomania for decades (so I was exhausted and depleted), and I had trouble managing allergy symptoms, despite avoiding a large number of allergens. And I had two autoimmune diseases. I was also taken off all food containing large amounts of sulphur (brassica family, egg, garlic, onion, almonds and cashews), which I mention, as it is related to pyroluria. I wasn’t too keen on following the naturopath’s instructions, as more foods not related to pyroluria were also taken away for a few months, but the day after I cut out the Sulfur containing foods, I had no allergic rhinitis, whereas I normally spent the first couple of hours every morning blowing my nose and sneezing.
Within 3 months, I had become much calmer, and started feeling better. I was very tired after the hypomania wore off, nut I’ve mostly recovered from the tiredness now too. It’s incredible. I have to take the tablets for life, I’ve been told, but I’m happy to. I used to be hyperactive even when I was exhausted, and it would make me ill and also affect my ability to connect with others. And I used to get sick all the time, and stay sick. Now, I get sick far less frequently, and recover fairly rapidly. My skin and hair used to be very dry, and now they’re closer to normal. I am quite certain that my late mother had a very bad untreated case of pyroluria too, along with some other family members.
The article states that people with this condition have trouble digesting protein then later to avoid carbs. I guess that leaves fat for dinner. ;-P
then you have a PEMT mutation you shouldn’t eat fat…LOL