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IDK about any of you but I'm sick of looking yellow all the time and having brain fog and all the other stuff NO docters care about. For years us gilberts sufferers have had to deal with no progress and take it into our own hands to find out what works. Ive looked at a bunch of stuff and tried a ton of stuff.
I started eating no red meat, sugar, chocolate or fried food and accompanied with tanning. My levels have slowly go down but it was months inbetween slowly. Not enough to get it below jaundice levels. Then my docter FORBID me to get regular blood tests which is driving me insane. Now i'm going to have to talk to her in person. Ridiculous. I read that a person had success with a Low Carb High Fat diet so Ive been trying that but can't tell anything really without blood test.
So I was thinking they use Bili-lights to treat Crigler Syndrome. Its sappose to work less effecient after age 4 cause of the skin thickening. Bili lights are also not commercially available. I'm not sure what the side effects would be either. Has anyone thought about this? I think it would make more sense then getting sun or tanning cause its direct attack on the problem. Let me know what you guys think?
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