Okay so personally I would never use it, I am too afraid to. but I have a question. Have any of your doctors explained to you what heppens to the phe in your body? I met with my dietitian today and she sad that the pill blocks the ability for the phe to get into the brain but it still in your body. Has anyone explained where it is stored?
I am on the phe bloc.. i was told the phe does stay in the blood but is blocked in the brain by these pills. What goes there to the brain is tyrosine and tryptophan. I have been trying it for about two months .. not sure how to do it and not sure if i will do it for long. To be honest i really wanted to do it to save on food bills that low pro food is high ! my levels were always good before this time well ok mostly good . Andolyn
Andolyn, I was just wondering, has the pill been working for you? Also when you first started taking it did your doctor need to take your blood alot? The reason I’m asking is because (even though I said I wouldn’t do this) I have been asked to join a study with the pill Kuvan and I really don’t know if I want to do it. Part of me does because I’m curious and for various other reasons, but then part of me doesn’t because I’m afraid to and I don’t want to experiment with myself. But the main reason is because I don’t do good with needles AT ALL and if I join the study it would mean more blood tests. nBreanna 16 CPKU
Speeking of pills if you have read the winter news letter they where talking about that (BH4) pill. Well when I got home that day from school I got an E-mail from my DR. she asked me if I wanted to be one of the people to test the pill. and I said yes but instead of helping it made my phe levels (Went to went to the moon). As my DR. said so now I’m back on lanaflex and doing better.!