Posted by Garnetldn on July 11, 2010, at 16:03:01
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by jahxman on June 30, 2010, at 14:42:42
Hope it's ok to post this here. We are a group of people exploring the possibility of or treating for Pyrroluria.
http://health.groups.yahoo.com/group/Pyrroluria
I have researched the scientific literature and even talked to the top Porphyria researcher in the country as well as the Porphyria Foundation. There is little support for this condition according to Dr Karl Anderson because there is not a good marker for testing for the disease or even for the Pyrroles themselves.
I personally wonder how much it has to do with the fact that treatment is non-patentable vitamins and minerals.
Like Lyrica and Fibromayalgia, until there is a drug to generate profits, the disease is "all in your head".
Hope you can join us on the list and contribute your knowledge or benefit from list resources and discussions.
Garnet
poster:Garnetldn
thread:498689
URL: http://www.dr-bob.org/babble/alter/20100703/msgs/954134.html