MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 5 posts - 1 through 5 (of 5 total)
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  • in reply to: Papaya leaves #50703
    Susan Paolilli
    Participant

    Hi Carolyn and Allen! When I was diagnosed 1 yr ago, I was very frustrated when I was told that there were no treatments so I used the NCBI website for my research. If you type in “herbal treatments for thrombocytopenia”, a number of promising research studies will discuss herbal treatments for thrombocytopenia in your case or neutropenia in my case. I have been on the herbal and acupuncture protocol for a while and my blood counts are greatly improved. I hope you can find something useful.

    in reply to: low WBC and alcohol, correlation #50702
    Susan Paolilli
    Participant

    Hi! From my research, keep alcohol and wine to a minimum because it stresses the immune system and MDS is all about creating a strong immune system! I am currently on an herbal and acupuncture program which has normalized my neutrophils, HCT and HG so I can say that my condition is related to a strong immune system.

    in reply to: Just got diagnosis a few days ago #50701
    Susan Paolilli
    Participant

    Hi Mark! I am 73. I was diagnosed 1 yr ago with abnormal blood cells and low neutrophils (neutropenia). The only reason I discovered the problem was that I was constantly getting a cold! Imagine my surprise when I was told by 3 doctors that there was no treatment for MDS but come back in 6 months so they can follow the progression! I am not one to take a back seat in life so I started researching and learning about this condition and how there are treatment options in “alt med”. I am on an herbal and acupuncture protocol which has normalized my neutrophils, HCT, and HG. Although I still have slightly low whites, my hematologist tells me I am now stable. I am not deluded that I am cured because I know that MDS is related to age and immune system strength but I have found some treatments that have worked for me so far. I hope this helps.

    in reply to: Diagnosed 2 years ago #50700
    Susan Paolilli
    Participant

    I am 73. I was diagnosed 1 year ago when the blood work showed abnormal blood cells and neutropenia. I have had no previous chemotherapy or radiation. My hematologist and two other doctors offered no treatment options and I was told to come back in 6 months for another blood test. I resarched and started on an herbal protocol and acupuncture when I discovered that the diagnosis was MDS. I don’t know what triggers the blood precursers to change but I believe that it is related to old age and the health of the immune system. I believe I caught my condition early because my protocol has normalized my neutropenia. My HCT an HG is in normal range for now and there are no abnormal blood cells. I hope my experience will give some hope to others with MDS.

    in reply to: End stage MDS #49922
    Susan Paolilli
    Participant

    If there is a low neutrophil count then the nobody can’t deal with inflammation or infection.

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