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Old Wed Apr 30, 2014, 07:37 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 827
I've had chronic neutropenia for many years now, and my specialist thinks I've had MDS for about 4-5 years. My neutrophils are normally well below 0.9. The last 2 months have been 0.4 and 0.3 respectively.

I live a fairly normal, active life and continue to eat lots of fresh fruit and vegies (well washed). If I have the slightest hint of a sore throat I take a 5000 mg Echinacea capsule. At the hint of a UTI I take a 10,000 mg cranberry capsule. Coconut oil pulling is good for mouth ulcers (see I continue natural remedies every few hours until symptoms go. They are usually effective, but not 100% of the time. I did have to take 2 consecutive courses of antibiotics recently for a UTI. (They were the first antibiotics for 12 months or so).

I avoid products containing cane sugar products and maple syrup, and only use stevia or pure unheated honey for sweetening. I avoid dairy products.

As you can see below I have a 4-weekly infusion of gamma globulin (Intragam) for hypogammaglobulinaemia. While it doesn't increase my neuts or WCC I think it does help to keep my immune system in better condition.

Hope this helps you!
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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