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 am going to my hemotologist/oncologist Friday morning. I am going to ask for him to check my IGG panel, he always does a CBC and CMP plus a PROTIME. What other tests do I need? I have been plagued with illness this past year and I am going to push for him to do something or send me to one of the 3 immunological doctors in town. I am at a loss. My IGg was 516 in 2010 and the other levels were on the very low side of "normal". In the last year I have had 4 sinus infections, bronchitus twice and a MRSA infection that lasted 4 months plus dyschromic eczema on my feet. I have had chronically high platelets and white blood cells of unknown origin and now for the past month I get off work and sleep for about 2 hours, then wake up and maybe eat dinner then go back to sleep until 7am the next morning. Something is just not right. My Infectious disease doctor brought up IVIG twice but didn't want to step in my hem/onc toes. I am just so tired and frusturated. Any help or just words of encouragment would be appreciated.
If you are sick of being sick and tired, you may want to listen to your ID doc. If your levels are low...and 500's can be considered low enough with little/no vaccination response. I think you know the answer darlin ((hugs))
Firstly trough levels only apply to subsets of and not all primary immunodeficiency patients. Secondly published studies of trough levels represent mean data and are not reflective of the dosing
required by an individual patient. For example, a patient who is diagnosed with common variable immunodeficiency (ICD-9 279.06) and has an abnormally low IgG level of 521 with absent specific antibody will not be receiving adequate therapy if a trough dosing regimen with a goal of 500mg/dl is applied as the patients IgG level is above 500mg/dl before therapy has begun. This patient, however, is susceptible to the ravages of infection because he has impaired antibody quality and fulfills criteria
for common variable immunodeficiency
There a LOTS of people who do IVIG VERY VERY successfully and go to work the same day. Yes there are lots on here who suffer side effects. THAT being said, alot of people leave this board once they start doing well and unfortunately we don't read a whole lot of "good" stories :) There are ways to mitigate the side effects. I had horrible effects and still wouldn't have stopped...because it worked, I didn't get sick NEARLY as much. And you can always go to subq too after a few treatments. It IS do-able.
> due to "too many side effects" just shows his utter lack of
> knowledge about this all.
I agree with kelli1b's comment; withholding treatment due to "too many side effects" is ridiculous.
A doctor's job is to present the patient with a set of possible treatment options, along with the pros/cons of each, and allow the patient to decide which one suits them ... NOT make the decision on behalf of a well-informed patient, particularly when it comes to a long-term chronic condition which absolutely requires treatment.
> THAT being said, alot of people leave this board once they
> start doing well and unfortunately we don't read a whole lot of
> "good" stories :)
Agreed.
This board has hundreds of registered members, and new ones being added every few weeks, of which only a handful remain active posters after the first few months.
This is a good sign I think; people start feeling better, and continue on with their lives. It emphasizes the notion that the treatment works.