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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.

Baffled-doctor

Opinions vary as to polyuria’s status.

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.

A naturopath wrote: 

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).  

Heme is part of the hemoglobin molecule

Heme is part of the hemoglobin molecule

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

Is pyroluria real -and is it present in FM an ddME/CFS?

Is pyroluria real -and is it present in FM and ME/CFS?

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

Health Rising is not affiliated with any labs or doctors or websites mentioned in this blog

 

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