Probiotics? Good or bad?

Hi. I'm Nancy. This is my first visit to the new board, but I'm by no means a newbie to PDSA or ITP.

Anyone here every try probiotics? If you did, how were your numbers? I started taking them on my own about four months ago after a dose of antibiotics wrecked my stomach. I did some research and it all said probiotics were the greatest thing since sliced bread, especially for people with autoimmune diseases. My stomach felt better, as did my general digestive health.

In the beginning of March, I noticed the dreaded spots on my legs when I wasn't even looking for them. I noticed some bruising before that, but I knew what it was from – my arm getting caught in the subway door lead to a nice bruise for one. I was feeling fine and didn’t suspect that my numbers were low before the spots. I saw my hematologist ASAP. I was at 78K, which was higher than I thought. I had a bag packed for a hospital stay because I was that freaked out. My doctor said she wouldn't treat me yet at 78K and we'd wait and see instead.

Here’s my brief history: I was diagnosed about 5 years ago in late 2005 when blood work for a surgery revealed the low platelets. I did pred and then Rituxan, which set me straight for about two-and-a-half years. When I relapsed in 2008, I was hospitalized twice and did a double dose of Rituxan – 8 doses instead of four.

My doctor told me to stop the probiotics. My numbers then climbed up to 100K only a few days later. This morning, I was at 120K. I know the difference between 78K and 120K isn’t all that much, but I’m fairly close to having normal platelet numbers again.

I know I should have called my hematologist before taking the probiotics. I should have known better, but everything I read made them sound harmless. I wonder if eliminating them will allow me to stay in the 100-120K range?

Has anyone else had a good or bad experience with your platelets while taking probiotics?

I took probiotics for a while and didn't have any changes in counts. Maybe it was the brand? I don't know. I don't see how they could do any harm unless they had something in them that wasn't pure or safe.

If you are having gut problems, that could cause your counts to tank. If the probiotics help your gut, I would think that would be a good thing. Some gut problems are made worse by probiotics (I've got one of those) so I wouldn't be surprised if they affected my counts in a bad way but you said you were doing better, so it's hard to think of how the probiotics could cause it. But remember, probiotics and other over the counter herbs, meds, etc. tend to not be well documented in terms of their possible adverse effects - so maybe.
Erica