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Hi Lou
Hi Lou, I am on the protocol too, but not having the same issues you are. I wonder if your doctor knows that having this telemere problem could make you prone to pulmonary fibrosis? Do you have pulmonary fibrosis or liver cirrhosis? I don't remember what you probably told me previously (darn AA, can't remember anything...). That could be related to the major problems you are having. I'm sorry you are having a sucky time...being sick stinks big time. I take Juice Plus, that keeps me healthy. I also use my Vitamix often, so if I don't feel like cooking, I put raw fruits & veggies in my blender and drink it! If you haven't done so already, you might need to look into supplements like it so you stay out of the hospital. I try to avoid seeing any more doctors than I NEED to  ). Good luck, hope you feel much better soon.
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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