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Old 08-23-2012, 06:58 PM #11
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
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I'm not up on how the succinyl-CoA and the methylmalonyl-CoA affects the heme pathway, having never read anything like this in 16 years on line after Porph dx. But I await more information, and if you are right, the porph community awaits! Some porphs have tried B12 but it does not seem to be a help in most cases, that is, taking the big dose shots. Of course most of us with porph do take multi-vitamins. My favorite B Complex is the sublingual from Source Naturals.
many of us with Porph do have that problem you mention of digesting protein and fat, but most of us are on a balanced protein-carb diet because it is essential for porphs to have enough carbs. Without enough carbs, starvation sets in and a porph attack results.
So dieting is hard for porphs. The primary symptom of porphyria is acute abdominal pain, which I had when young, but do not have so much now that I know how to avoid triggers and how to eat. Avoiding triggers is the MAIN thing in porph, rather than adding supplements, although most take supplements in moderation. Yes, too many supplements, big trouble.

Just remember, in re porph, however, that each of us with porph has one enzyme low in the heme pathway, but it is not the pancreatic enzyme system. That does not say that we could not have a low pancrease enzyme as well.

Of course we all here on this forum would like to know how this relates to MS.



Thank you.

Mariel
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