Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I'm newly diagnosed with CVID and wondering if people have immunologists or allergists manage their care? What is the difference? What do you look for/find important in your dr. I've also heard that some hemotolgoists manage care for cvid patients...
I've had mixed opinions on my dr. so far, so just wanting some tips.
Any iowans out there with a good dr. recommendation?
I've had mixed opinions on my dr. so far, so just wanting some tips.
Any iowans out there with a good dr. recommendation?
welcome
:o)
In case you don't have the link, here it is: http://www.primaryimmune.org./
University of Iowa
Iowa City, IA
Is on the IDF board of medical advisers. I'd be sure to see him and not just anyone at the University of Iowa.
So far, I am very happy with him and his knowledge/treatment. I'm there twice a week for allergy shots with the nurse but my doctor will also see me without an appointment whenever I am feeling sick or just need to talk; he does this at no additional charge too.
I have also been having major breathing issues which the asthma and allergy treatments have not responded to. Rather than going outside his area of expertise he referred me to a Pulmonist last week and in less than a day of seeing this new pulmonist he found a hazy spot on my left lung which we will be testing further.
I ramble. I got lucky with my Allergist but not all Allergists are created equal. I would recommend an Immunologist with ID experience to be on the safe side and always check her/his credentials. I also recommend any other doctors you see also be familiar with CVID. I have made it a point of doing this using my Allergist/Immunologist as a resource for referrals and then I have my PCP put in the referral request to my insurance company. My current PCP has even referred me to another PCP within his group to see instead, who has knowledge of CVID.
I'll shut up now. Good luck and welcome!
doctors are like any other profession, i was an elementary teacher, but my area of specialty was reading difficulties, math difficulties, and children with special needs. my partner teacher was an elementary teacher, but her specialty was gifted children... we all seem to take more of an intertest in one area or another within our chosen profession..... my advice through all i have learned trying to find a team of docs to treat my various stuff related to cvid is to find one that has taken an extra interest in the immune system or lack thereof, my daughter and i use a hem/onocolgist...he has taken an interest in the immune system or lack thereof, he treats cvid, and cancer both leave you with little or no immune system...he has published research and patients travel from all over the state to see him. he has a large population of cvid patients. i also have an internist that treats my everyday stuff, i have an ent, lung doc and rhuemo. my internist manages the care the others use their area of specailty to take care of the stuff he doesnt have enough knowledge of....meaning he would not determine how much IVIg i recieved or how often - not his area that is my hemo. they all have their area, but the internist manages all the others to make sure things arent overlooked. he manages all my medications EXCEPT the IVIg. the others may rx but he keeps up with all to make sure things are not overlapping and interacting....
use common sense. i have found a doc can put a sign out saying he/she is a specialist in this or that...i want their actions to back it up! if they make a claim see what research they do to back it up. you really need a team as time goes on. ..... more than likely....
good luck