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Have Bronchiectasis, recently diagnosed with pseudomonas
MAC & Bronchiectasis | Last Active: Oct 17, 2023 | Replies (208)Comment receiving replies
@heathert Thank you for posting this article. It goes along with what my dr said to my husband and I when we first consulted with him in 2013. He said that bronchiectasis was very much the same as CF without the CF gene. And it has to do the the proteins that we lack to protect the lungs from various bacterias that we breathe in. It is funny, I guessed it was a protein issue back in 2007. I did all kinds of research online through NIH, Mayo, and institutes in other countries including the UK, Germany & Japan. I had notebooks that looked like a mad scientist was trying to figure out a great mystery. Well, I WAS trying to figure out a great mystery. I was stymied as to why an otherwise healthy person (me) was so incredibly ill. It all pointed to a protein issue. As I recall, it was a B protein of some sort.
Replies to "@heathert Thank you for posting this article. It goes along with what my dr said to..."
CF, meaning cystic fibrosis?
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@terri, I went to see a neurologist for my feet. She gave me a blood test, including vitamin B 6. Turns out my b6 level was so high it was toxic. It takes a year or two to eliminate...it is not soluble and gets stored in muscles. She told me to check labels, especially energy drinks which almost always have a lot of B6. That was about 7 months ago. I had a recent test; had to be sent to a lab in Virginia as B6 testing is not a routine blood works test. Three weeks later I got the results. I think a normal range was like 1.2 to 2.1...mine was 126. Really high. I'm wondering what a B protein is. High B6 is one of the causes of peripheral nephropathy. My primary doctor, very knowledgeable
had never herd of B6 toxicity. Just wondering if any Mayo buddies have vitamin or protein problems. Flib