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Old 06-24-2010, 08:45 PM   #1
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Join Date: Mar 2009
Location: Bakersfield, CA, USA
Posts: 98
kelli1b HB Userkelli1b HB User
Question CVID & possibly Valley Fever need help

Hi everyone,

You guys have always helped me out with my CVID and now I need your assistance again. Background:

Have CVID and on IVIG. Been getting CT scans of lungs every 90 days watching the nodules. Suddenly they are "too numerous to count" and double in size. Pulmonologist said biopsy asap (tomorrow yikes), ran numerous labs.

The doc I see for my CVID is an infectious disease specialist. I feel like he is learning as he is going: refuses to let me do sub-q (too many side effects), told me it was impossible to get an autoimmune disease with CVID (I read we are more susceptible to it), will not call doc consult line at IDF, etc. Per your advice, I am trying to get a consult in Los Angeles with a specialist - thank you Markincleveland.

Now, my pulmo had me call CVID doc. They BOTH think I have Valley Fever. They said my lungs are so bad if it was cancer I would be dead. BUT for Valley Fever patients the scan would be typical.

PROBLEM: PULMO said: "It is negative. Since you have CVID, the serology test may be negative as it relies on antibody production. Continue Diflucan.
Repeat blood test in about 2-3 weeks." My infectious disease doc said Valley Fever isn't an antibody test and neither was TB (which he tested me for).

I thought we couldn't do antibody tests as they always show negative. Does anyone know how to get a diagnosis if I test negative to it? Can my lung biopsy give them an answer? I did not read good things about people with immune disease's and Valley Fever. Like a 60% death rate. **** I need an immunologist so bad right now. Any input would be greatly appreciated.

 
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