Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 Wow, I hope someone on here can help out with that! :-/ Maybe she could try keeping a jar of raw honey on her and taking a teaspoon regularly to help prevent the attacks? If she needs that much carbs, that would be an easy and certainly delicious (!) way to get them. Chris ____ " What can one say of a soul, of a heart, filled with compassion? It is a heart which burns with love for every creature: for human beings, birds, and animals, for serpents and for demons. The thought of them and the sight of them make the tears of the saint flow. And this immense and intense compassion, which flows from the heart of the saints, makes them unable to bear the sight of the smallest, most insignificant wound in any creature. Thus they pray ceaselessly, with tears, even for animals, for enemies of the truth, and for those who do them wrong. " --Saint Isaac the Syrian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Here is the Porphyria Foundation http://www.porphyriafoundation.com/overview.html#head1 Kat http://www.katking.com ----- Original Message ----- From: " Marla " <talithakumi@...> < > Sent: Sunday, December 15, 2002 2:56 PM Subject: Help with porphyria? > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 This sounds like a problem that only Dr. Mike might have the expertise to address, or he might have an idea where to find someone who understands this problem. It sounds too complex for any of the rest of us to offer any suggestions, unless someone really understands the biological fault that is involved. It might be worth a consultation with Dr. Mike, who is willing to do it by email. Here's his website www.cedarcanyonclinic.com Peace, Kris , gardening in harmony with nature in northwest Ohio If you want to hear the good news about butter check out this website: http://www.westonaprice.org/know_your_fats/know_your_fats.html ----- Original Message ----- From: " Marla " <talithakumi@...> < > Sent: Sunday, December 15, 2002 5:56 PM Subject: Help with porphyria? > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Marla, Its quite nice of you to post this for her. The first thing I'd suggest she's already doing and that is to avoid extremes in her diet right now. Not too heavy for carb, prot or fat. The place I would start were she my client would be with this statement from the porphyria link you posted: Inactivation of this enzyme can be triggered by iron, alcohol, estrogens, and infection with hepatitis C or HIV It is doubtful that this problem was caused by eating low carb certainly aggravated but not caused. One of the blood panels I would recommend would be a transferritin test and possibly additional testing to determine Iron load status. Also hepatitis C is a strong possibility however I can't imagine if she's been to that many docs that nobody would have picked that up. And certainly looking at her estrogen exposure history and likely do a current hormonal panel. As far as estrogen exposure goes a basline approach for this in any estrogen excess situation is coconut oil, plenty of protein AND carbohydrate combined, minimal pufa. I hope this helps, if there are more questions just let me know. DMM http://www.cedarcanyonclinic.com Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.