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Old 09-25-2009, 04:31 AM #11
TrishaPDX TrishaPDX is offline
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TrishaPDX TrishaPDX is offline
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Default Glycine to hinder porphyria attack

Quote:
Originally Posted by jennifer774477 View Post
I am in a medical emergency. I had my first porphria attack from taking pharmaceuticals. I sufferd seizure and heart failure. I was treated with more pharmaceuticals at hospital and am in my second attack. I was unsucessful in my attemts to educate hospital staff and protect myself from inappropriate treatment. If I have seizure and heart failure again I will be unable to access life saving treatment safely. I am awaiting test results and trying to get in to see a specialist in order to resolve the problem. Meanwhile I am trying to avoid seizure. Drinking water was helping me to eliminate the pharmaceuticals that provoked the attack, and was helping with the severe painful skin burning symptoms(I have no tolerance of any form of light-not a window or even a light bulb, can not wear clothes or be touched, spent weeks naked under a sheet covered in ice packs)I am suffering neurological symptoms, muscle weakness, ringing in the ears, foaming at the mouth, auditory disturbances, fainting, nausea,painful bowel movements as well. At hospital my porphria was ignored, my neurological symptoms mistaken for psychiatric and they believed I gave myself heart failure through poor behaviour(water drinking). My refusal to eat processed junk foods and demand to have the natural organic foods my husband brought me was interpreted as eating disorder. They believe eating organic vegetables ,grains, meats and eggs instead of cookies , canned soup, tea and coffee is dangerous and can provoke heart failure. They are able to take ideas like this and use them to deny me my human rights and much needed medical care, and force porphria provoking drugs on me against my will. I don't know what I can do. I am eating a perfect high carb organic diet, and minimizing water drinking because of the way it effects salt levels. With porphria salt levels drop which leads to heart failure. I am trying to keep my salt level up. Less water is making my skin symptoms bad but I must avoid the hospital. Does anyone know if I can protect my human rights some how?
Hi folks --- I know the original post was some time ago and hope oh hope Jennifer is healing. When symptoms of porphyria toxicity appear, we've had good results in using the amino acid GLYCINE.

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Old 09-26-2009, 11:24 AM #12
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Hello Jennifer, and welcome to NT! This is such a great place with so many friendly, helpful, and caring people.

We're so very glad you found us!
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Old 09-26-2009, 12:02 PM #13
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It looks like the original post here was from quite some time ago... but if anyone finds themselves in such a predicament... I would think they could find help by contacting one of the sources listed here at the bottom of the page.

http://digestive.niddk.nih.gov/ddise...yria/index.htm
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