I elected to avoid medical and drug treatment. I went onto alternative approach more than a year ago. My blood count held up at a steady level. My September 2019 lab result was WBC: 0.72, RBC: 2.64, Hgb: 9.5, Platelet: 19. I have been receiving acupuncture treatment once a week for a year. I have been taking a Chinese herbal capsule, Linzi, one capsule a day. My blood count deterioration stopped this past year. My September 2019 blood teat result is very similar to December 2018. My blood count deterioration started in 2015.
I still have fatigue if over exerts myself like running with grandchildren for few minutes. I get light headed sensation if gets up too fast from the floor. I only follow up with my primary care physician twice a year. I didn’t get sick even though my grandchildren around me had fever and runny nose from flu this past year. I had no abnormal bleeding.
Hematologist saw me every 3 months in 2015. 2-3 tubes of blood was drawn for testing at every visits. He also wanted bone marrow biopsy yearly. I stopped seeing the hematologist and MDS specialist, and picked the alternative approach. Because the MDS specialist in NY told me to live a normal life but follow up every 3 months with blood test and bone marrow biopsy yearly. There was no treatment prescribed.
I have been lucky with the alternative approach. At least, I don’t have to suffer needle torture every 3 months. I am not trying to discourage other MDS patient to avoid the conventional approach. Just a different idea if you decide to go the alternative way.