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CVID?
Posted by: Emmie (---.ias.bredband.telia.com)
Date: March 12, 2008 03:27PM

I am currently having a discussion with my asthma doctor. I have been having recurrent infections since the age of 16 (now 37). It started with me having my first otitis ever at 16, then moved on to recurrent sinuitis for 5 or 6 years. Then bronchitis and/or pneumonia 4-6 times a year. I have caught pneumonia due to mycoplasmosis three times now.

He blames it on me, that I would not be taking my asthma medication. I am indeed taking it, probably more compliant than most patients. I measure my PEF regularly at home and adjust the doses accordingly. As I work within the medtech field we have clinical staff at the office, and all our nurses have suggested CVID as the reason for me getting all these infections.
I asked my doctor for blood tests, he took IgA, total IgG and IgM. I havenīt seen the results myself, but he says they are within normal range. No further investigation so far.

My question to you is: are there any more tests I can ask for? I am now on my second treatment with antibiotics this year and it is not even April yet. Somethingīs gotta be wrong and I am eager to find out what.

Re: CVID?
Posted by: Alice Rowell (---.range81-132.btcentralplus.com)
Date: March 13, 2008 07:21AM

Can I suggest you also ask this question on the PIA (Primary Immunodeficiency Association) Forum, they have a very active discussion section with people from all over the world.

www.pia.org.uk/forum/index.php

Cheers
Ax smiling smiley

Re: CVID?
Posted by: Emmie (---.ias.bredband.telia.com)
Date: March 13, 2008 09:17AM

Thanks, will do that too! smiling smiley

Re: CVID?
Posted by: Phoebe (---.twcny.res.rr.com)
Date: April 06, 2008 03:18AM

Emmie - there are more tests you can ask for. First of all, find out if he tested your IgG subs, or just overall IgG. Some people have normal overall IgG, but are low in one of the four subclasses (IgG1, IgG2 etc.). Here's a link: [www.primaryimmune.org]
Doctors who aren't familiar with primary immune deficiencies are likely to test only the overall levels and not know to test the subclasses or not know that you can have a subclass deficiency and be symptomatic.

Finally, even if your levels are all normal and your subclasses are normal, you still might have other parts of your immune system malfunctioning. Some people have normal levels of immunoglobulin, but an impaired antibody response (e.g. you have a basketball team, but they don't show up to play). This is tested by measuring your antibodies to pneumonia, giving you the pneumovax, and then having you wait a month and remeasuring the antibodies (through blood tests) to see if you mount an adequate response to the pneumovax. They may also use other vaccines, such as Tetanus. If you flunk the pneumovax, even if you have normal levels of immune globulins, they aren't doing their job and you can benefit from IVIG.

You might want to look for an immunologist with expertise in immune deficiency. A lot of asthma docs really aren't that knowledgeable.

Good luck.



Edited 1 time(s). Last edit at 09/18/2008 01:52AM by Phoebe.

Re: CVID?
Posted by: mom-mom-6 (---.hsd1.pa.comcast.net)
Date: June 02, 2008 02:11AM

Go to an Infectious Disease doctor. They may be much more helpful.

Re: CVID?
Posted by: Duke (---.hsd1.in.comcast.net)
Date: June 30, 2008 10:33PM

Emmie, how did you come out ?
I am new to the group.
I have low subclasses 1, 3 IgG.
I take IVID but think dose too low. Dx 18 months ago, but amazing results at first ( less sinus infections).

Re: CVID?
Posted by: Emmie (---.ias.bredband.telia.com)
Date: July 20, 2008 11:42AM

Well, I finally managed to get a referral to the immune deficiency unit at the university hospital. They totally agreed with me that it is not possible to rule out a deficiency based on total IgG, IgM and IgA (especially not when taken in connection to a severe pneumonia), so I am up for more blood tests (went to the lab and took them last week). I think they are analyzing total IgG, total IgA, total IgM, subclasses IgG + running a screening panel for the complement system (?). I am a bit eager to get the results... I am pretty sure something IS missing, I would just like to know WHAT! smiling smiley

Re: CVID?
Posted by: markincleveland (---.neo.res.rr.com)
Date: July 20, 2008 07:11PM

From what I read, in addition to reduced IViG, IGiM and IViA there has to be an inability to develop immune from vaccinations, such as pneumonia, tetanus and so on as a part of definitive CVID diagnosis.



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