Have you looked into CBD oil in this forum as a possible alternative treatment. I to am confounding all doctors but my copper levels are normal. For me my chromosomes are normal and do not indicate MDS but i am still diagnosed with it. I am going to try CBDs because i am tired of 3 years of monthly blood transfusions and ironload. The compounds are mysterious and have mysterious implications in the body that the medical community is only starting to understand.
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Originally Posted by Daisyraybell@yahoo.com
I came across Chirleys forum researching my copper deficiency. I feel my fate is the same. I am so grateful to have read her story and more importantly learn from it. My copper level was at 53 I was then was given intravenously 2mg a day of Copper Chloride for 3 days in a row. My copper level was checked 2 weeks after treatment and it went to 54. My hematologist oncologist basically said it was scientifically impossible but at the same time my bmb and bma came back and no MDS was found in the bone marrow but was found in my genes! Wth!!! Funny thing is I was referred to the hematologist because my family practice doctor thought I was exhibiting signs of MDS. I had 2 seizures in one week and now I'm being sent to a nuerologist. I have the MRI Tuesday. My health is declining significantly and meanwhile I'm waiting around for doctors. My hematologist oncologist has sent me to a assistant professor out of the university of Colorado Aurora. My first appointment is Friday. Can't wait to see what the regime is or prognosis. We're going to start looking for a stem cell transplant. In the meantime I bought some chelated copper to see if my body will absorb it. I have also found there can be a genetic mutation that can cause copper transport issues that relate to the copper deficiency. I literally became a member of this forum to find more about Chirley. I'm saddened she is no longer around!
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