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CLL and bugs

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Hello Friends -

Like some of you sometimes do, I though I would give a bit of a progress

report. (Although this is all so peculiar that I'm not sure it will be of much

good to the general community....)

As some may remember, the whole thing started with a diagnosis of AIHA

(autoimmune hemolytic anemia), and was then complicated by them finding babesia

(a

parasite) in my blood. These little guys are native to Nantucket, which is

where I spend much of the winter.

So things got really bad in October, crashing red counts, weak as a ghost,

mahogany colored urine (forgive the details), and numerous other indications of

heavy hemolysis. In the hospital for a week, then a lot of out-patient stuff,

numerous transfusions, etc.

Last four weeks things seemed to be much better. HGB up to 12, strength back,

optimism back. Then today I was told they have again found the damned bug in

my blood.

Conclusion, because of being immuno-compromised to some degree, my body

cannot get rid of the parasite, even after more than two months of antibiotics

and

anti malarials. Now they're saying I may never have had hemolytic anemia, or

had it and it went away, and everything is being blamed on the babesia.

For sure a paper will come out of this (what an honor!), as apparently there

is no record of a CLLer getting babesia, and it possibly becoming chronic. It

seems that in a healthy person babesiosis is always curable.

The miracle in all of this, some of you may remember, is that I was about to

have my spleen removed because of the AIHA. Had this happened, I would have

been facing the babesia without a spleen, and chances are considerable that I

would not be sitting here writing.

Best to all,

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