CVID Testing?

Well, I visited my rheumy yesterday and he threw me a curve ball I was NOT expecting. I explained to him how I've been sick for literally the past 6 months..on this horrid cycle of antibiotics and steroids.

He was listening to me vent, not saying a word, and finally he said, I'm ordering some more blood tests for you. I'm very concerned about all this sickness you're having and catching what seems to be every little thing going around. I'm testing you for CVID. Of course not knowing what it was, and then reeling from yet another 10 vials of blood being taken from me, not feeling well anyway.....I didn't really process it until I googled it. And it scares me. It has a lot of the same symptoms as lupus and again, the symptoms I've had every one of them.

I also got my biopsy done finally on the recurring skin rash I get, so yesterday was not a good day.

Have any of you ever been tested for CVID or know anything about it? It's honestly hard to find anything about it online that's not completely medicalized terminology :)

Thank you Ann for taking the time to research it for me! That seriously means a lot. I know I won't know anything until I get the test results back...so more wait and see, but I'd love to learn more about it.

Hugs...Jenn :)


Ann A. said:

Dear momma
So sorry that you having this experience. I have not been there and will not claim to have any knowledge. I did find some web pages that are not all in medical jargon. Perhaps these will help while you wait for the LWL members who have knowledge and experience to respond.
Just wanted you to know that I had read your post. That I care. And that i am willing to learn.

A Blog - Written by Someone who lives with CVID - http://cvidtheelusivedisease.blogspot.com/
An Article http://voices.yahoo.com/living-common-variable-immune-deficiency-cv...

CVID Support Groups -

http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/sup...
http://www.mdjunction.com/common-variable-immune-disorder

Thinking of you & hoping for the best outcome. The puzzles never end! Kaz xo

Hi Mamma2mm,

I just read about CVID. It sounds a lot like what I have had for 21 years now but they call it CFIDS which stands for Chronic Fatigue Immune Dysfunction Syndrome otherwise known as chronic fatigue, which gives it no justice. I wonder if this is a new diagnosis for what I have and they changed the name? Anyway my symptoms are a lot like lupus symptom but I don't check positive to lupus. I am on a trial drug for lupus to see if it helps (plaquenil). Let us know how you make out, I am so curious now???

Ally xox

momma.....here is another links to some info about causes of CVID, if you google "causes of CVID" a ton of links come up with lots of info on them.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/types-of-pidd/common-variable-immune-deficiency

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

Ally

Thanks so much Ally! I've been doing so much research the past few days. Guess I should probably just wait until I get the test results back, but the more research I do, the more it makes sense. Especially due to all the respiratory sickness I've had the past year. :( But, I may just be psyching myself out too. You know how we all do that when we've been searching for answers for so long.

Allergic said:

momma.....here is another links to some info about causes of CVID, if you google "causes of CVID" a ton of links come up with lots of info on them.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/ty...able-immune-deficiency

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

Ally

You're welcome. Yes, I know how it is. I just found out I have Lyme disease. Was finally tested in January and came up positive for borrelia and co-infection of mycoplasma pneumoniae organisms. (fifteen years of not knowing what the heck was wrong). I wonder if it goes deeper than that. What makes some people more prone to come down with the infections and some people can fight it off?

I noticed in one of the articles on CVID said that if you have lyme disease and you also have CVID, that treating the CVID will help your body to defend against the lyme. That's interesting. Do you know which tests your doctor ordered? This stuff is so complicated, isn't it?

momma2mm said:

Thanks so much Ally! I've been doing so much research the past few days. Guess I should probably just wait until I get the test results back, but the more research I do, the more it makes sense. Especially due to all the respiratory sickness I've had the past year. :( But, I may just be psyching myself out too. You know how we all do that when we've been searching for answers for so long.

Allergic said:

momma.....here is another links to some info about causes of CVID, if you google "causes of CVID" a ton of links come up with lots of info on them.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/ty...able-immune-deficiency

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

Ally

Thanks Ann. Seems vitamin D deficiency is common these days. Maybe they are just becoming more aware of it. I guess the body needs what it needs and that's the bottom line. If there are deficiencies in anything, you will have imbalance and be prone to one thing or another. I feel like we are slowly going back to the beginning of time before man started to mess around and alter everything. It's kind of exciting to think that there are things that we can do to improve our chances.

It IS so complicated. He ordered the immunoglobins tests so all the antibody ones: IgA, IgG and IgM, I believe there's another Ig one that he ordered too, as well as testing my ANA again.

Here's a link I found that describes the results of the tests pretty well and what they mean. I bookmarked this so I can refer back to it once my results are in:

http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2

He also had a dermatologist biopsy the recurring rash I get on my elbow since it's flaring right now. They sent that off to Mayo to test for DLE and something else. It's just so hard when all of these diseases can easily mimic each other and if there's really no definitive tests.

Although it looks pretty cut and dry with the CVID tests...which is "good/bad" if it comes back with low numbers because I'll have an answer and treatment plan, but "good/bad" if it doesn't because I'm back to square one it sounds like :(

I'm so sorry to hear of your Lyme disease...goodness like you don't have enough to deal with huh?

hugs...Jenn


Allergic said:

You're welcome. Yes, I know how it is. I just found out I have Lyme disease. Was finally tested in January and came up positive for borrelia and co-infection of mycoplasma pneumoniae organisms. (fifteen years of not knowing what the heck was wrong). I wonder if it goes deeper than that. What makes some people more prone to come down with the infections and some people can fight it off?

I noticed in one of the articles on CVID said that if you have lyme disease and you also have CVID, that treating the CVID will help your body to defend against the lyme. That's interesting. Do you know which tests your doctor ordered? This stuff is so complicated, isn't it?

momma2mm said:

Thanks so much Ally! I've been doing so much research the past few days. Guess I should probably just wait until I get the test results back, but the more research I do, the more it makes sense. Especially due to all the respiratory sickness I've had the past year. :( But, I may just be psyching myself out too. You know how we all do that when we've been searching for answers for so long.

Allergic said:

momma.....here is another links to some info about causes of CVID, if you google "causes of CVID" a ton of links come up with lots of info on them.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/ty...able-immune-deficiency

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

Ally

Waiting for results are very difficult. I've found this site that has explanations and associations of CVID I had to read most of it to understand.

Common variable immunodeficiency

TY Ann for the info :)

Thanks momma.....I'm gonna save that link in case I need it. These conditions do overlap. All of them. Like a large jigsaw puzzle that has too many missing pieces. Oh well, one thing at a time....

momma2mm said:

It IS so complicated. He ordered the immunoglobins tests so all the antibody ones: IgA, IgG and IgM, I believe there's another Ig one that he ordered too, as well as testing my ANA again.

Here's a link I found that describes the results of the tests pretty well and what they mean. I bookmarked this so I can refer back to it once my results are in:

http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2

He also had a dermatologist biopsy the recurring rash I get on my elbow since it's flaring right now. They sent that off to Mayo to test for DLE and something else. It's just so hard when all of these diseases can easily mimic each other and if there's really no definitive tests.

Although it looks pretty cut and dry with the CVID tests...which is "good/bad" if it comes back with low numbers because I'll have an answer and treatment plan, but "good/bad" if it doesn't because I'm back to square one it sounds like :(

I'm so sorry to hear of your Lyme disease...goodness like you don't have enough to deal with huh?

hugs...Jenn


Allergic said:

You're welcome. Yes, I know how it is. I just found out I have Lyme disease. Was finally tested in January and came up positive for borrelia and co-infection of mycoplasma pneumoniae organisms. (fifteen years of not knowing what the heck was wrong). I wonder if it goes deeper than that. What makes some people more prone to come down with the infections and some people can fight it off?

I noticed in one of the articles on CVID said that if you have lyme disease and you also have CVID, that treating the CVID will help your body to defend against the lyme. That's interesting. Do you know which tests your doctor ordered? This stuff is so complicated, isn't it?

momma2mm said:

Thanks so much Ally! I've been doing so much research the past few days. Guess I should probably just wait until I get the test results back, but the more research I do, the more it makes sense. Especially due to all the respiratory sickness I've had the past year. :( But, I may just be psyching myself out too. You know how we all do that when we've been searching for answers for so long.

Allergic said:

momma.....here is another links to some info about causes of CVID, if you google "causes of CVID" a ton of links come up with lots of info on them.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/ty...able-immune-deficiency

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

Ally

I hope they do benefit. Maybe they will find an accurate way to manipulate the genomes.

Ann A. said:

And they could not map the genes controlled by vitamin D until after the human genome had been mapped. Because rickets has always been associated with increased susceptability to infections, the idea that vitamin D deficiency plays a role in immune function has been around for more than a century. But the technology to explore how it functions at the cellular level did not exist until the postgenome period. Future generations may benefit.

Amen! I was thinking of you yesterday when I saw an Ann of Green Gables animated show. I love that story and thought how Ann grew into such a fine woman. :')

Ann....you are always forthright, no matter what, like Ann of GG.

Ally :')