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Old Tue Jan 31, 2017, 04:50 AM
Lulu Lulu is offline
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Join Date: Nov 2011
Location: UK
Posts: 49
Update

Hi folks, sorry haven't been on here for a while!

FMT made a dramatic difference to my gut, went from having chronic diarrhoea to normal, and (bizarrely) within two days my runny nose which I had had all my life and thought was normal, cleared up. Unfortunately the dramatic improvement did wear off within a few weeks, although it is better than it was. Possibly if I could afford to have a week of FMT every month for a couple of years the gut problems would be curable, but it is ridiculously expensive if you go to a clinic.

This time last year my Hg dropped suddenly, from 10ish to 7.9 at its worst and white count/neuts were on the borderline of needing prophylactic antibiotics, and docs started talking about BMT. Had a transfusion and they found that I have multiple antibodies, which has complicated things massively. Since the FMT (early July) counts have been stable though low, most of last year Hg hovered around 8.5, and last week was 9.2 and white cells 4.5 (highest for ages). Feel OK-ish at the mo.

I am not sure how much of this is down to the FMT or down to other things I have been trying. Last August I had an abnormal test for something called Zinc Protoporphyrin which is generated when the body uses zinc rather than iron to make haemoglobin. Docs thought this was due to iron deficiency (which I thought odd as my ferritin is high and have macro rather than micro-cytic anaemia) and prescribed iron tablets, but I persuaded them to test for zinc and copper also. Copper was at the high end of normal, and Zinc was low (9 - it should be over 11)

Started taking 30mg zinc (balanced with copper) and within a week felt better and gut felt more settled. Interestingly, Zinc deficiency can be both a cause and effect of chronic diarrhoea. It did not seem to have any effect on my blood counts (unless it has taken this long to improve!)

I have also persuaded docs to test for various viruses including Parvo and EBV, am waiting for results of that.
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