Wellness

[I am still oxox]

Common Immune Variable Deficiency

It has been determined after months of blood work and pneumonia shots that my body does not develop the proper immunities. I am looking at monthly Imunogamagobulian infusions for the remained of my life.

If I do not the outlook might be bad

Has anyone been down this road

[teainlondon]

I have a dear friend who has this. She has the infusions. However, she goes to the gym and does mild exercises and does pretty much what she wants to. She is tired often, but she takes care of herelf.

I had never heard of this until she was diagnosed. I hope you do well with your treatments.

tea

[BirkiLady]

Have you found an excellent specialist? Many of us on these Forums have compromised immune systems and with appropriate care (and time) are doing all right. You will never return to a life of energy, but you will learn to live with your health issues. Give your body time to adjust to the infusions. It's a lengthy process before results are noticed in many (i.e. 6-12 months). It's a relief to know what the problem is and to begin a medical plan. Keeping you in my thoughts as you begin this new journey. I've found daily walks also are helpful in keeping my energy levels up. Later, I added swimming. This year, ballet lessons were added . . . but I'm not very graceful and balance is iffy! Blessings.

[software]

I'm sorry you are not well but be glad there is treatment.

I have a friend who probably could benefit from treatment but her doctor, in a small town, tells her "it is what it is, just live with it"    Dr treats her for the various symptoms but no infusions.    But she likes being a victim.

I hope the treatments work out for you.  

There may be a support group you can connect with IRL or online.

[DeniseColo]

@I am still oxox

I was diagnosed with CVID back in 2004 after developing epiglotitis.  Prior to that, I was always getting colds and sinus infections. Did the IgG infusions for about 2 years. Stopped them only because I lost my insurance. 

I never felt that great while doing the infusions but I had lots of other stuff (health & personal) going on at the time so it's hard to say that the extreme fatigue was solely due to the IgG.  I will say it definitely stopped me from all the infections I was getting at the time.  We tried several different infusion schedules, finally settled on every 3 weeks to achieve the best bloodwork. The very first infusion was done at the hospital just in case I had a reaction. After that, they were done at my house by a specialty infusion home health nurse.

I'm not sure what my IgG levels are now so I just assume that I don't develop antibodies and am careful about exposure to people who are sick, wash my hands often, etc.  Have only had a few minor colds in the last 5 years. If I spent a lot of time around more people, especially young children or was getting infections, I would push my doctor to test me again.  And I would definitely do the infusions again, even though I didn't really like them, if I felt it was necessary. Better than being critically ill again!  

If you have any questions, let me know. I remember how unsettling it was when I first got the CVID diagnosis, especially after reading more about it. Maybe my experience isn't common (and I certainly wouldn't recommend just stopping tx like I did) but I did want to share it with you.

[I am still oxox]

@DeniseColo

Thank you did you see an immunologist or just an allergist, all the testing and the vaccines were done by my allergist.

My brother keeps saying go see an immunologist

Any more insight would be great thanks much

[LTT1]

@DeniseColo@software@BirkiLady@teainlondon

I have CVID. It was diagnosed a long time ago...about late 80’s.

My allergist ran a “panel” starting with a “challenge” of pneumonia vaccine. Apparently my levels were quite low in two IGG subclasses.

I was plagued with sinus infections chronic.

A visit with an immunologist netted two more sinus surgeries (instead of infusions). 

For years I was just very hard on myself and lacked energy. Teaching probably drained my immune system by being exposed to many youth all of the time.

By dragging myself around, I got my job done with little energy left over for family and activities.

However, now being retired allows for lots of rest and I do mean rest. Stress results in negatives. I limit my “public” contact, too.

[BirkiLady]

@LTT1Don't want to sabbotage this CIVD thread, but just want you to know my health has taken a turn for the worse. Have been in for lots of testing (completely unrelated to current health issues).  Have been on antibotics and another med for 10 days. Total exhaustion, among other things. Tuesday more testing at hospital. So much for my "feeling better during warm weather!" 

[LTT1]

@BirkiLady

I am very sorry to hear this.

I had always counted on dry summer weather and resting as my “well time” too.  But CVID can certainly have other plans!

Please report back because I’d like to know how it is going for you! Will try to catch up with you elsewhere, too, but that one may/may not happen!😉

[BirkiLady]

@LTT1  Thanks for your kind words. Glad we've met! Continue to rest and take care of yourself. Sometimes it all we are able to do. <sigh>

Not particularly comfortable sharing much publicly; especialy here, but will share a bit elsewhere later this week. I'm really a very private person. Hopefully, I remember how to access it!