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» LymeNet Flash » Questions and Discussion » Medical Questions » Porphyria

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Author Topic: Porphyria
R62
LymeNet Contributor
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I have been through a ton of stress. Moved out of mold infested home.. left most all we owned behind and then my father had a massive stroke.

Sometime in all this, I became near hysterical and remembered my kids tested positive for pyroluria.. my test was not handled properly, left at UPS for 5 days and then most likely held at vitamin diagnostics until they shipped out to Netherlands. So I assume a positive and sure enough, up my p5p and my body calms down close to immediately.

But.. during this time as well, my urine turned a dark reddish orange color.. for days. In AM and would clear out when I drank a lot of water.

I posted this to a pyrroluria list and someone mentioned porphyria.

My sister tested positive for porphyria when she was very sick. Later tested neg but I am gettig that a positive is a positive and now wondering if I have porphyria.

I am reading posts on the CPN board and serching teh archives here. Any insights, advice would be most appreciated.

I am reading to use CSM or charcoal to absorb teh fat soluable "toxins" from porphyria (porphyrin breakdowns?)..

I am also reading high carb diet which totally goes against my lyme and candida advice.. I also feel like I have low blood sugar swings.

Then there are the herbs, drugs to avoid.. I can find drug lists but not herb lists.

Finally.. what to do during an attack.. I am reading glucose or dextrose and saline IVs and heme products which seem to be last resort and one needs a positive test to get this.. side effects as well.

I am reading glucose orally if it will work.. tabs, drinks.. wondering what you all use.

I am reading the CSM - charcoal as fat soluable binders and lots of water for water soluable.

Vitamin A..

I have had attacks that have not made sense to me and this may be it.. tachy, shakes like in shock, breathlessness, buzzing..

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Lymetoo
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I don't know anything about porphyria.. but here is a link which contains many more links on porphyria.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/103302?#000001

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--Lymetutu--
Opinions, not medical advice!

Posts: 94079 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
R62
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Thank you!
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Lymetoo
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You're most welcome!

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--Lymetutu--
Opinions, not medical advice!

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Terminator
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R62 I also left a moldy place, and my coproporphyrin I and coproporphyrin III are high http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/104625

which porphyria is high for you?

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We will win

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R62
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Have not checked yet. Just had the reddish orange urine and my sister tested positive for "off the charts" porphyrins.. not sure if this was a general count or if there was a breakdown of precursers. This was at mayo clinic and they told her she had variegate.. I have read on internet that mold can trigger porphyria.. not sure if it triggers genetic or a secondary aquired form???? She also was exposed to water damaged building.
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Terminator
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can you please try to find the source of this info (that water damaged building can cause elevated levels of various porphyrins)? That would be awesome. I've become convinced that mold illness is much more a problem for me than lyme ever was.

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We will win

Posts: 135 | From California | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
   

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