Okay!!
So very, very sorry to leave you all in suspense! But it will be well worth it
So to back things up...
On Monday evening I got PLTs. The post draw level was 51.
That stopped the bleeding and new bruises from forming. However, on Tuesday evening I started breaking out in bruises. I also got this rash on my legs (that went away soon after, did not itch). My cheeks then turned bright red and hot as fire. They stayed like that all night long... I decided to go to the ER here and while there the rash on my feet showed up and then went away. The nurse there was like that is weird...yeah I know.
So anyhow, they were like you totally need platelets (I look like I got beat up.) They were just about to hang them and the results came back in the 70s so they decided not to. What the heck? What is going on? The only thing I can think of is the results were wrong? Or the airplane ride? Or??? All I know is I look beat up. So they did not give the platelets. Currently, I have no new signs of bleeding so they must be okay than?? I just don't get this. My left hand is swollen with a hematoma on top. It is purple, blue, and black and hurts like crazy...not to mention everywhere else.
Anyhow...
My first apt at DF went great. This is my understanding of the plan.
Once I can stop the pain medications from a recent surgery. If able, he wants me to not take any of my current GI medications while going through the step process we have in place.
1) No lactose-down to the last detail, including none in medications. If things don't improve within 1-2 days this is not the factor.
2) Gluten free diet-He is unsure how long we should test this out before moving onto number three.
For the above two items, the theory is that GVHD can cause autoantibodies to the two above things including the low PLTS now, which is questionable.
If the above two show no improvement.
3) Pancreatic enzymes. I think the one he mentioned was Creon.
On a side note-he wants to know why I am having the issue with the B12 malabsorption. He questioned that it was not being absorbed properly in the ileum. He thinks the 1000 mcg daily is sufficient to currently treat this. This leads to number 4)
4) If not absorbing properly in the ileum not only is there malabsorption of B12 and probably other things. So this would lead to the question if the bile salts are not being absorbed, which causes bile acid diarrhea. The treatment for this is Cholestyramine.
And if none of the above bring any success...
5) Dana Farber has noticed a new condition they have yet to name. They currently call it Cord colitis. Because they have seen multiple people who received cord transplants who have similar symptoms, which are similar to mine. There really is nothing in literature yet. He said just because I didn't have cord blood doesn't mean I don't have it. He said the reason why he thinks I could have this is because my symptoms fit theirs and that Flagyl makes it better. He said they treat this with Cipro and Flagyl. It could be treatment for months to years. He said when I told him about how the Flagyl makes it better and when I stop it, it makes it worse, this totally hinted him towards this.
He also wants to do some switching up of medications...mainly getting rid of as many as possible to wipe things clean.
So that apt went great and I was so pleased!
Now to get off some of this stuff so I can get started on the plan.
He also asked if I wanted them to work up the low plts...why not? I am already here. So I had a BMB/BMA. Just waiting for results...
Thanks for everyone's kindness. Sorry if this is sloppy...I am tired...
Laura