Hmmm? I am not an expert by any means but my thoughts are that CVID is mainly the infections stuff that includes bacteria, viruses and fungus. Some energy/fatigue can be related to it based on your body being compromised and fighting and fighting. And then the rest are different kinds of autoimmune issues. My immunologist told me that he would be watching me for autoimmune issues because of that. He had me to a family history chart of autoimmune issues for his records to help him some. Most of which we would be getting anyway. Just my thoughts. Would love to know how others think about this. - Zen

Good Morning
There are so many weird symptoms that we face. It is so hard to know what is related. For me I am seeing that the late diog has left me sorta scared in the joints,discs, lungs and possible my heart. The lack of immune also wrecked havoc on my teeth in my youth.
I was not diog until 49.

Good question..Since I have other issues which overlaps the CVID it is hard to tell what is caused by the CVID or the HH.. speaking from my own experience I do know the IVIG has really helped with my infections and stomach issues..
Cheryl..

Hey NorthernElf,
I think I'm with you on that. I'm not sure how much to blame on CVID and how much is other stuff. So many of my doctors are unfamiliar with CVID and are quick to blame everything on it.

My breathing has been a world better lately and it took a long time for them to figure out it was the asthma. Several doctors blamed CVID. The problem with always blaming CVID is sometimes it isn't and the real problem gets missed. Not to mention they assume there's nothing else that can be done since I'm already on subq.

I agree the blood work doesn't seem to reflect what's going on. All of my antibody blood work was normal and I really don't see why they even did it. My CRP and SED rate were high and my immuno said that paints a better picture. He said CVID in and of itself doesn't cause joint pain. He said infection can cause CRP and SED to be high, but he is thinking I may have lupus.

I know I'm not being helpful in answering the question, but I'm just saying I relate. I don't know if I just have CVID and so much seems to go wrong with that or if I have a ton of other health problems too!

Anyway, I hope you have a great weekend.
Love and hugs,
Ashlee

Hi,

I don't have CVID. I have an deficiency of IgA, IgG2/4, and IgE, and some of the "C's" though I don't know what that means. I have sometimes severe joint pain, muscle aches, headaches, my body is swollen up in general, and I can't help but think that has something to do with the reason I have Intracranial Hypertension. (IH) I have a long list of symptoms that make no sense to me, and rest seems to be the only thing so far that makes anything better. I'm not on IVIG, so none of my symptoms could be side effects from that. For me it could be the Immunodeficiencies, or it could be the IH, or it could be something else altogether. Who knows?

This is probably one of the most difficult questions we face with our disease. The answer is complicated and not always the same for all of us. My doctor recently told me that CVID often mimics autoimmune disorders which may explain some of the joint pain and other troubling symptoms we endure without ever testing positive for other autoimmune disorders. Then again, many of us do have several autoimmune disorders and keep adding more as time goes on. I myself have been diagnosed with 5 since my CVID diagnosis and I'm currently starting treatment for suspected lupus. Lupus is not an easy, clear cut diagnosis. It may take a year or more to really get a firm diagnosis for lupus and some of the other autoimmune diseases as well. There is not one simple test that will prove anything. Unfortunately, it is a collaborative process that will include results of several blood tests, symptoms and working with your doctor over time to really conclude with a diagnosis. There is nothing simple about CVID.... everything is complicated and mysterious. There are just no simple answers. And then to make it all more confusing some of your most important blood tests may change from month to month. This is why it is so important to maintain a close relationship with your doctor. Hope this helps, some...

Hi Northern Elf,

I have similar issues to yours..joint pain, GI issues and fatigue. I am also on Plaquenil which can take up to 6 months before you get the full benefit of the med...I've been on Plaquenil for several years now, and rarely have joint pain.

I have a couple of auto immune diseases that I was DX'd with before I started IVIG...as you know, once you start IVIG, your ANA labs will never be accurate, and Rheumys rely a lot on ANA test results to DX Auto Immune Issues...

But, just because your labs may never be quite right, doesn't mean you can't get a good DX, or get your symptoms treated properly...Such as being RX'd Plaquenil...

I think it is really important to find a Rheumy who can think outside of the lab work box...There are plenty of other tests...subjective and objective that a good Rheumy who is not chained to blood work can do to help distinguish between AI and CVID. There are tests like Salivary gland biopsies, Schirmer's tests, chest x rays, and exams by cornea and retina specialists, GI Docs and more, can all be part of your DXing team when it comes to determining AI disease once IVIG has been started..

I think it is really important tor run new or strange symptoms by your doc...Just b/c we have CVID doesn't mean we can't have a high blood pressure problem for example that is totally separate...we might feel pain in our chest, and blame it on CVID lung related issues we've dealt with for years...when in reality we might need to start taking a BP med...

So it's really easy for us to miss or chalk up something that needs treatment to CVID...

I don't know if any of that made any sense....but I hope I didn't confuse you more!

Regards,
Anna