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Old 06-06-2012, 05:21 PM   #1
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CVID + Neutophil, platelet, and occasional red blood cell problems

Greetings,

I have never posted before. I was diagnosed a year ago with CVID which I can deal with because I am on IVIG, but I have neutrophil and platelet problems that no doctors have apparently seen before.

I get Neulasta shots to make neutrophils (white blood cells) every 3 weeks even though I don't have cancer, and that make me sick for about a week after treatment. I will go to 32,000 neutrophils after treatment and in three weeks I will only have 500 left. When my Neutrophil count goes up the platelets go down and when they are higher the neutrophils are low.

I saw a Professor at National Jewish Health in Denver who has been in practice about 40 years and he has never seen a case before like mine,

I have the autoimmune disease and the mystery blood cellular disease, so I am wondering if anyone else has blood counts that go up and down like the stock market.

Thanks, and blessings to all who deal with this daily as I do.

Ecampbell

 
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Old 06-06-2012, 06:20 PM   #2
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Re: CVID + Neutophil, platelet, and occasional red blood cell problems

I have the same thing going on but at least they're giving you the neulasta. In my opinion, these are lupus symptoms but your labs won't convert to positive for a long time. Also RA symptoms but it doesn't sound like you have the joint stuff going on?? Lupus will attack your blood and internal organs. You need to go to a GOOD rheumatologist and start getting the lupus meds you need. A good rheumy will diagnose you by symptoms and not wait for your labs to convert. Good luck, sweetie, and please keeps posted.

 
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Old 06-06-2012, 06:28 PM   #3
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Re: CVID + Neutophil, platelet, and occasional red blood cell problems

Thanks NellieNunu

My blood tests for Lupus three weeks ago came out negative again, but I think your advice is worth following up.

I do have Fibromyalgia, but I have been on the Guaifenesin Protocol for several years and I have very few problems from that now.

I appreciate your quick response!

Ecampbell

 
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