Pyroluria

[LNN]

For anyone interested, there's a Yahoo support group for pyroluria. Not sure if it's very active or helpful but figured I'd pass it along...

http://health.groups.yahoo.com/group/Pyrroluria/

 

This is the introduction:

 

Pyrroluria, explored by Abram Hoffer MD in the 50's, is named for the elevation of urinary metabolites with Pyrrole rings. Incidence may be as high as 10% of the population. It is thought to be genetic and run in families. Stress intolerance is a hallmark symptom.

 

Members are encouraged to share all experiences, resources, ideas & information - little is considered off topic.

 

Symptoms may manifest initially as behavioral & mood disorders. Associated degenerative disorders: Alcoholism * Allergies * Arthritis * Asthma * Autism * Bipolar * Cancer * CFS * Depression * Drug Addiction * FM * Heart Disease * Nightmares * Insomnia * Mood Disorders * MS * Poor or No Dream Recall

 

Lacking a body of peer reviewed scientific literature, Pyrroluria is looked upon as a pseudo disease by mainstream medicine. It is therefore not surprising that patients resort to the exceptionally talented pool of holistic practitioners. For their dedication and perseverance we are eternally grateful.

 

Children tend to be more easily diagnosed than adults. Symptoms range from the emotional & physical stress intolerance to anxiety, panic attacks, drug, alcohol & even chemical sensitivity, mood swings, depression, prostate issues, sensitivity to light, noise & tactile stimuli, schizophrenia, pain, seizures, adrenal tenderness on deep palpation, physical debilitation, paranoia and even criminal behavior. White spots in the fingernails, which can be intermittent, thought to be due to Zinc deficiency, may be an initial clue.

 

There is a high need for & dependency on supplementation of Zinc, Vit B6, B3 and Gamma Linolenic Acid. Dietary sources are inadequate. Improvements are often noticeable within three days of supplementation. Symptoms may return in as little as two weeks of cessation of effective supplement regimens.

 

Malvaria, Mauve Factor, Pyroluria, Pyrroluria, Pyrolleuria, Pyrrole Disorder, Elevated Kryptopyrrole, B6 & Zinc Deficiency, Urinary Pyrroles, Hemopyrrole, Indole, and Hydroxyhemo

[sf_mom]

Great resource, thanks!!!!!! We definitely noticed improvement within 48 hours of supplementing for older DS. Our children are not fully biologically related thanks ART (assisted reproductive technologies). All children were carried by me in-utero. All three have congenital Lyme with similar co-infections to me. For our family, I tend to believe the KPU was acquired due to the chronic infection.

 

-Wendy

Edited September 30, 2011 by SF Mom

[butterflymom]

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Edited October 7, 2015 by tampicc

[LNN]

Hi. For those of you interested in pyroluria/kpu:

 

There have also recently been some long discussion threads on kpu on the autismweb forum, under 'biomedical treatments'. Lots of discussion there on various biomedical things, supplements. There are a couple of families there that have found kpu treatment to be the missing link for them, and are thrilled with the progress in their child. Also a few PANDAS folks on there occasionally.

Wow - thanks for the site. It was like finding ACN in a parallel universe. Especially liked the very long KPU thread. Had a hard time biting my tongue on the Pandas thread. Think I'll lurk for a few days and see what I can learn. Thanks again!

[sf_mom]

Tampicc, Thank you!!!! Always great to find new resources. The one thing that struck me is the relationship between KPU and enzymes. Both my daughter and myself have very low digestive enzymes.

 

-Wendy