Help with porphyria?

[Guest guest]

Hi All:

I've been corresponding with someone who has an interesting medical

condition called porphyria. She has been trying various things for about 3

1/2 years with no success. Basically, her porphyria condition manifested

itself when she tried a low carb diet about 4 years ago, and her condition

has been declining ever since. Evidently, low carb diets are not good for

porphyric patients and had she known she was at the time, she would not have

stayed on the low carb diet for as long as she did. She has now developed

neurological damage and possibly pancreatic damage. She's at a loss as to

what type of diet to follow. Any suggestions would be appreciated. I asked

her if I could post her letter so you can get an idea of what she's dealing

with. (She's starting to have difficulty doing research because of her

weakened condition.) I'll forward any response to her. She knows I'm not a

medical doctor or a licensed practitioner. She's been to alternative

doctors and conventional doctors already without improvement and understands

that any info you all can offer are only suggestions. You guys know much

more about carbs and glycemic indexes than I do. Which carbs would be more

benefical to eat? Or how can she balance her carbs with meat, etc. to

improve her health? She feels she's at a stale-mate and would appreciate

any other insights. TIA, Marla

Here's a brief on porphyria http://www.zevils.com/~matthewg/porphyria.html

Here's her latest letter:

Hi Marla,

Thanks again for the info. Some of the sites I am familiar with, others I

am not. I do have Sally Fallon's book, and think it is good. The original

low carb diet I tried when I got sick was D'Adamo, Eat Right for Your Type,

for type O. I was only trying it, to do it with my husband to see if he

could lose weight. I live in Alaska, so actually seeing Aajonus is not

possible for me right now (just too sick to travel ). I am not sure he

could help me anyway, since he does not use enough carbs in his diet.

Trying to get 450 g of carbs a day is hard to do, even if I had an appetite,

which I do not. What I am trying to figure out, is how to obtain enough

carbs, healthfully, without burning out my pancreas, which I may have

already done. I am interested in few aspects of his diet that may help me.

The honey-he says acts like insulin, so it is good for diabetics (many

porphyrics end up diabetic due to the high carb intake, and the simple

sugars we need during attacks-Gatorade, candy, glucose, etc. I have much

inflammation, so I also felt the low fiber aspect would be less irritating

for my stomach and colon. ( I do not do well with raw vegetables at all,

and am not entirely sure that cooked vegetables are utilized.) I also know

I need to eat raw red meat to help with the deficit of heme that I have.

However, eating meat alone, would cause an attack, and the recommended diet

for porohyrics is vegetarian. I think his theories on fat are great, but

because my metabolism is so deranged, I am not sure I could tolerate all the

fat he recommends without setting off an attack. What I need to do is to

ask a biochemist if fat is used for energy, or stored, if there are

adequate carbs in the diet. What porphyrics have to avoid is burning fats

for energy, because our beta oxidation pathway is dependent on heme

proteins, which will set off the porphyria due to the demand for heme, which

is the pathway that is deranged in porphyria. (That is why I thought the

starch-fat fruit combo may work-the carbs may allow the fat not to be

burned-but like I said, I would have to ask a biochemist.) I do know

monosaturated fats are used differently than others, and do not put the same

demand on the pathway-so avocados, almonds and olive oil should be better

for me than others, but I also am low on cholesterol, so eating butter and

eggs would help that, but may set off the beta oxidation pathway. I need to

talk to a biochemist about this. Thanks for letting me put this in words,

it has given me some direction as to what I need to do. I truly appreciate

your help.

Take Care,

XXXXXX