Comments for Thinking Physician

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Comment on CVID? by Mark Leventhal

Mark Leventhal — Fri, 09 Apr 2010 12:28:54 +0000

First of all the thing to remember is that almost 80% of patients whose CVID was promptly diagnosed consider their health a average or better. Still it is a scary diagnosis.
He needs to consider your total IgG level and if he hasn’t done so do a pneumonia vaccine challenge to see if you get immunity from the vaccine.
I would go the Immune Deficiency Foundation website, primaryimmune.org and order the information books, They will be a great help in your understanding of the illness.
Finally, this is not a diagnosis for doctors who do not treat a large population of primary immune patients. This is not a diagnosis for amateurs. Most allergist and hematologists have not seen this a lot, It is not taught in depth in medical schools. My strongest advice is to find a physician who treats a large population of PIDD patients. If you can’t find one, you might contract the IDF and they can give some names of physicians who are experts in ths complex illness in your area of the country. Please do not feel you have to see the nearest allergist. Since this is generally a life long diagnosis, I would strongly recommend that you consider traveling several hours to an immunologist if need be. You’ll probably only need to see him several times a year after all this get sorted out. The rest of his treatment can be done in your home or through a local physician.
By the way, IgM deficiency is no big deal and IgG sub 1 isn’t either. Is his pneumonia responding to antibiotics?
The IViG treatments are infusions, IV’s that is they are inserted into a vein, not an injection. I was diagnosed with the illness almost 30 years ago and my two teenagers also have the diagnosis. They both have done well, my youngest daughter will attend an Ivy League college this and was a varsity athlete. My son was student body president of his college last year and played three varsity sports in high school.

This illness can be serious, but most patients do well.
Feel free to contact me if you have questions.