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Doctors' Answers to "Frequently Asked Questions" - CVID


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

Common Variable Immune Deficiency
Question: I have the chronic illness Common Variable Immune Deficiency. I've been on infused Gammagolbulin for over 15 years. I was part of the initial U.S. trials and I've been infusing at home for 8 years. From the time I started my infusions until January of last year I did very well with no hospitalizations and no serious infections. However, this past year has been a disaster, as I have been constantly ill, having cough we can't figure out, resistant to almost everything, pneumonia, multiple sinus infections, and a positive blood culture for endococus. My antibiotic medications totaled over $4,000 last year. My doctor has a major HIV population and about 25 patients with CVID.

When do I decide that this is not working and leave town for a second opinion? Is it of any use to have someone else review the situations and see where we are? Do I take all my CAT scans, MRI's, labs, records, etc, or do I need to have them retaken at the other institution? How do I keep my relationship with my doctor intact?

Answer: The best of us sometimes gets tunnel vision. This can be particularly true if you have been taking care of the same person for years and a new problem arises. A second opinion is always helpful, if nothing more than to re-secure your opinion of your primary physician. I never mind if patients desire a 2nd opinion and any secure physician won't either. Indeed, good ones will line up the opinion for you. I doubt that you'd need to leave Cleveland. Just see another competent physician and let their mind peruse your data. Take the films with you since repeating them is a waste. Maybe you don't want to focus entirely on the immune deficiency because another problem might have arisen. I would find a community physician who is a good clinician, regardless of their academic credentials.
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