Quote:
Originally Posted by glitterandlace
I am VERY interested in hearing your story. Please give me the thread to your story!!!!! Just message me. =-) I am a firm believer also that you should not go to such drastic measures (ATG, Cyclo, Stroids) unless your levels are so continually low, that you are at risk of death. As long as you are transfusion independent IS the most important thing. Then you can work on it from there with diet, supplements, or herbs,,,ect. I am wondering how do you get your teeth cleaned with platelet levels that low? That is the only thing I am scared of doing right now. I haven't had my teeth cleaned for almost 2 years because of AA. =-( But my platelets are a little lower than yours. I won't get a platelet transfusion now until my platelets drop below 10. Before I was getting transfusions when my platelets were in their 20's at the doctors pressuring. I have now realized you REALLY do not need a platelet transfusion in your 20's. But I wish to be in my 20's again like you.
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Hi! sorry I didn´t reply earlier, but it seems like I didn't configure the forum options to let me know when there is a reply, I will have to check that again. I haven been very busy because I will be moving to the UK (Nottingham) in 3 weeks, so I should be able to make that post this week.
About your questions: my platelet count dropped to 16.000 so my doctor proposed Danazol, which I will start tomorrow. I don't like the idea, since steroids caused a tumor in my liver about a decade ago.
Even with this 16K count, I have no nose bleeding at all, and no gum bleeding at night (which I had before ATG more than 3 decades ago). I got a blood extraction 2 days ago, the needle didn't leave a mark at all, and the puncture stopped bleeding almost right away. This happened at least the last 5 times I got tested, I usually got a nasty round blue mark that lasted for at least a week. But only when the needle didn´t go into the vein right away (my veins are crappy and thin).
Brushing my teeth is not a problem at all....if my gums bleed, then the bleeding stops in about 3 minutes or less by itself.
I´m going to acupunture right now, tomorrow will be my 5th time. I feel stronger and with more vitality, but the blood count didn't change so far. At least not the platelets, I will have to compare the rest to the test from a week ago. And I started to take shark liver oil pills just to see...but I see no results in the tests so far (have been taking them for two weeks now).
I will post all of that in a separate post, I will try to do that this week.
The strange thing is that I feel exactly the same way with 16K platelets than I always felt with less than 30K. Actually as I said above, I feel stronger after I started to go to acupunture. It might be even be some sort of placebo effect, but honestly I don't care, because at the end, I DO feel better.
I will PM you my e-mail in case you want it, no problem at all
Take care,
Joaquin