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Old 11-14-2006, 09:21 AM
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mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb Hello Wendy...

You know we had a porph board at OBT. And one gal there with porph and
neuropathy (she used to post on the PN board there).. took my advice about
using B6 activated version called P-5-P and she had remarkable improvement.
Some people cannot convert pyridoxine in vitamins to the active form (this occurs in the liver).
So P-5-P bypasses that. You do not need huge doses...50mg/day is usually enough.
here is the link to her supplements that worked for her:
http://web.archive.org/web/200203192...ML/000356.html

If you would like to read other posters on this subject using the Wayback Archives use this link:
http://web.archive.org/web/200202191...000&LastLogin=

OR try the home page and type in Braintalk.org into the engine and load only the old dates up to 2003. Many pages are NOT archived, and the engine is slow...so I found one that worked for you in the link above. That link goes up to 15 pages and you can try to click on them. Don't expect everything to work.

Here is another paper:

Quote:
1: South Med J. 1991 May;84(5):668-9. Links
Acute intermittent porphyria with atypical neuropathy.

* Goren MB,
* Chen C.

Department of Medicine, Fairfax Hospital, Va.

The patient we have described had lower extremity numbness, paresthesias, constipation, urinary retention, and sexual dysfunction. Laboratory evaluation confirmed a diagnosis of acute intermittent porphyria (AIP). Vitamin B6 and glucose therapy initiated resolution of symptoms. The sensory neuropathy described here is unusual, and we believe sexual dysfunction is a previously unreported manifestation of AIP.

PMID: 2035100 [PubMed - indexed for MEDLINE]
Here is a paper on pyridoxine deficiency--
http://www.emedicine.com/med/topic1977.htm

this article has a good list of "safe" drugs and "unsafe" drugs for
porphyria:
http://www.emedicine.com/med/topic1977.htm

I hope this helps....you don't say what you are doing currently for the porph, so I thought this might be helpful for you.
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