Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Mar 30, 2015, 12:36 PM
Friedbrain Friedbrain is offline
Member
 
Join Date: Aug 2012
Posts: 18
Idk diagnosis, w ? about neutropenia + live bacteria

I visited here two ys ago when I was experiencing neutropenia, low platelets, and sporadic low RBC (the one time I requested they test for reticulocytes, they were low, too. I had a bone marrow biopsy done, which they botched and I decided to table my concerns as I wasn't going to do that again. My very consistent problems are neutropenia, and elevated MCV and MCH (the RBC and platelets are low but wnl).

I recently experienced an unexplained "flare" of neurological problems and I'm trying to figure out why. I had a possible lightbulb moment when I stumbled upon the "neutropenic diet" for transplant patients (but I come by it naturally). I had just, for the very first time ever, had several helpings of live culture yogurt-oops! That's apparently a no no and I've been trying to understand why and what happens. Someone explained that neutrophils clean up bad bacteria and that the body cannot handle the bacterial load if one eats (inoculates with) live bacteria yogurt. Then what happens? Presumably there's an over abundance of bacteria but....? Does it cause inflammation? Through what mechanism, or what happens? I'm trying to figure out if this could've set off an autoimmune attack, or inflammation in the brain or something that explains the subsequent neurological problems. The timing was quite suspicious.

I see my doc next month. Any thoughts would be appreciated!
Reply With Quote
  #2  
Old Mon Mar 30, 2015, 03:02 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
I would doubt the yogurt set off any inflammatory or autoimmune attack but then there's a first time for everything. If you have digestive issues or gut flora imbalances, then introducing good bacteria could have a temporary die off effect of the bad stuff especially if you flooded your system with a lot of it. John ate quite a bit of fermented/cultured food when he was neutropenic without any adverse effects.

Do you know what your specific B12 and folate lab numbers are? Many just know they are in the "normal" range which is not really too helpful when trying to understand if there is a nutritional issue going on. Also, if you are taking any vitamins when you are tested, it will falsely elevate levels. So it's good to know the exact numbers. Blood and nerves are very dependent on B12 and folate in order to function properly.

I would suggest, if your doc hasn't done so recently, to have your B12, B6, Folate, iron, zinc, vitamin D3 and copper checked. Stop taking all vitamins 3 -4 days prior to testing. All play a role in both blood and nerves.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Vidaza: How Long Can You Live? MDS Diagnosis sobrien MDS 2 Wed Aug 14, 2013 04:44 PM
Trying to get a diagnosis rdavidp MDS 4 Sat Feb 11, 2012 01:04 AM


All times are GMT -4. The time now is 06:36 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org