Hi, has anyone tried macrobiotic diet as an alternative therapy? I've been on it for 5 months now and at first, it shot my counts up to 90, which was great. Unfortunately, my numbers have slowly decreased to in the 40's and now just fluctuate between low 40's and mid 60's. At least they're somewhat stable! Prior to the diet I couldn't get over 30.
I'm desperate to get off the prednisone, which I've been on since February. Every time I get down to 5 mg, my counts plummet. My new doctor promises that he won't increase the dose but will instead go ivig. I guess I'm wondering if I should stick with the diet, or give it up. The doctor says it is probably not helping or hindering, but every time I stray from it my counts drop.
I could not get off prednisone after my first platelet crash in April that year. Every time I tried to taper off and was near 5 mg, everything crashed. This happened four times that year. The first time I agreed to an ivig (my first and last), and after a 3 day stay and lots of vigilance by the nursing staff, I realized that there was too much risk with an ivig.
Instead of running to the hospital for each platelet crash, I simply by prednisone dose back up to 40 - 50 mg and waiting for the steriod to get the platelet levels back up. Although I hate the drug, I am grateful that I still have a response to it.
So my strategy was a severe diet (no gluten, no alcohol, no sugar, no caffeine, and no drugs - not that that was a problem for me) and heavy on greens and fruit, and light on meats and fats. The curious thing was that doing this improved my health and the way I felt while on prednisone (I was on the pred for 9 months that year). I found out I was gluten intolerant in doing this diet which was an important discovery. But in the end, while I think diet is REALLY important, that alone will probably not get you off prednisone entirely. In my case I tried Reiki and that seem to push me far enough that I could stop taking steroids.
If you haven't tried Reiki or Homeopathy, consider both. And find out if you are gluten intolerant. That will be important as well. But the short answer to your question is STICK WITH THE DIET! GL.
My friend tried the diet to live healthier, not an ITPer - by the time they moved back to the States from Tokyo where she started the diet she was very ill and her organs were shutting down - that diet didn't do her health any good.
While we were in London we met someone, he looked kind of yellow - found out he was on the macrobiotic diet.
Lol, well I haven't turned yellow yet and I feel and look better than I have since my 20's. I'm also gluten free (since February) and am basically vegan (occasional fish). But it is not easy and when I have low counts, I'm always second guessing what I ate that week, because nothing else has changed. Same old story as I'm sure most of you have encountered. John - thanks for the link, I'll take a look.
I think sometimes a package diet (like macrobiotic) works because there is some food in it that was causing you trouble, not the whole combination of the diet. I found out that onions were a big part of my problems and we had been going through a bag of onions every week. I miss them though.
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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