posted
These porphyrins are substrate that carry Cuper (Cu2+)to build hemoglobin and alot of enzymes so if this is high it means something is going wrong on that pathway.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
Mine are elevated too. Doc said it was due to being on birth control for several years...I don't believe him.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Thank you. Doc actually implied that my birth control had produced a FALSE high porphyrin level and ignored it.
I have always had an inkling that I do have some type of porphyria... I have severe leg pain and GI problems which are common in this disease. Plus the high levels....
I am wondering if there is a porphyria "expert" out there that could help me get a proper diagnosis (or not). I know that my stool and 24urine tests were not done properly- nobody knows how to do them!
I have an appt end of this month with a specialist.. birth control pills would be a trigger for genetic porphyria.
Posts: 861 | From USA | Registered: Dec 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Keebler has written a lot of information on porphyria, you can do a search for porphyria.
I have no opinion at the moment but all of the not allowed abx meds on the porph list helped me, just had to start slowly. Not sure if it is connected to infectious diseases. Just my thoughts.
Posts: 1834 | From US | Registered: Oct 2008
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posted
I think it depends, if they are slighty elevated it could be caused by infection, metals or medications. If they are highly elevated it could be genetic. chlamydia pneumonia site cpnhelp.org has alot of info on porphyria and how to treat it during treatment. The porphyria foundation doesn't have much on infection based only genetic.
Posts: 433 | From new york | Registered: Dec 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
renny - the specailists you get lists of at the american porphyria foundation do not diagnose so..
I would find a hemotologist. (i have an appt with one soon to try to get diagnosed)
when you call to make the appointment ask them if the dr has any experience with it. Because it is a rare thing some drs have never actually seen a case of it before.
here is a sight with unsafe med link and some dietary info
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