There is more information out there every day. The very fact you are getting infusions to deal with it is a huge step in dealing with the problem. Not long ago that option did not exist. As far as this group, it is not very active at all. It can be frustrating at times.

Thanks for taking the time to respond. I do look up information. My doctor had me on the main immunolgy site. And others are not very helpful. But knowing that there are more people struggling like me helps. You don't feel as alone

Hey!! You are not alone. I don't even bother explaining to people what is wrong with me anymore. Lol. Most people just see me sick all the time and think that's it. Or that I'm faking or making it sound worse than it is. (Hypochondriac or something) My family doesn't even support me or help when I am sick. But anyways. Know that you are not alone!!! And just having the medicine available to you is a HUGE plus *it could always be worse* I was diagnosed at 19 (34 now) I'm going to check in here regularly now that I know this site is here ✌️

It can be a very isolating disease. I think it is hard for people to understand in general. I was diagnosed about 18 months ago and started on the infusion journey. We gradually increased the dosage and now I am doing them every three weeks at a fairly high dose. I went a few months off of antibiotics and had no infections, I started to try to live a "normal" life again and got run down .... back on the antibiotics now. It is so frustrating and I wonder when does it stabilize? It seems that the second I have any extra stress or get slightly rundown I end up back where I started again.
After reading the posts here I feel a bit better knowing that the things I am thinking and feeling are felt by others.
Mentally, I feel very defeated, although I know things could be a lot worse. I have always have had a "glass half full" mentality and I feel guilty feeling the way I do.
Glad that I found this site. You are definitely not alone!

I was diagnosed in my early 40s - docs ignored symptoms- treated me like a hypochondriac etc- same story for most of us.
I'm still struggling. I'm actually working on my notes for my appointment with immunologist tomorrow. I've got some strange skin issues that have been terrorizing me for years. I've got lung problems- intestinal issues- serious dental problems- multiple skin infections- ulcerations- hair loss-hives - enough of my story. But I know how difficult it is to deal with CVID- life just about stops - festers- and we live from IgG treatment to the next (exhausted from treatment etc)

I'm having a hard time dealing with my situation- some days are better- occasionally some weeks - but right now I'm angry and frustrated- trying to keep myself engaged in the fight (I have to use mind games - fights/ competitive- etc)

All that to say- I understand- I often feel defeated- I feel defeated today.

I'm glad I found this group- knowing someone is out there really helps.

Sending you peaceful energy and hopefully you will have a relaxing and pleasant evening.

E

Is there any chronic illness support group near you?

I'm now 40 years old and I've been living with CVID for almost 10 years. I get infusions every 3 weeks. IVIG. If you have any questions Im hear to listen and hopefully help you out. I admit it's a frustrating condition but I want to assure you that you're not alone in this fight

My problems didn't begin until the age of 50. It started with not being able to swim across the pool after 30 years of competition. Then allergic reactions to shellfish and medications. Worked into GERD, IBS, many skin cancers (all kinds even melanoma), stomach problems, etc. Now, no dairy and gluten, caffeine or sodas. Years of infections (respiratory and sinus). After a year trying to find source of stomach pains, many tests and doctors, they found IG deficiency. Sent to immunologist and then diagnosed with CVID and hypogammaglobulinemia. She started me on infusions. They gave me a blood clot after 6 infusions. Two years later, I am back on infusions (Civitru) because I am permanently on blood thinner (Xarelto) because of more blood clots.

Yes, people think we are making all of this stuff up to get attention. I would rather be without all these aches and pains and eat anything I like. The infusions cost a fortune and will go on forever. Looking for a support group in Orange County, California. Some days are so depressing.

I was dx with CVID last year at 68 yo. Why? No one knows. I just found this sight an hour ago and it's so helpful to know others struggle with the same issues. I've had 7 monthly treatments and after having significant improvement I have hit a wall. Overwhelming exhaustion with minimal exertion and 16 hour sleeping days. I was beginning to think it was all in my mind. To know I am not alone is quite comforting.

I understand how everyone is feeling. I've had a sinus infection since 12/2013. They tried antibiotics and even did PICC line to run IV antibiotics 24 hrs a day for 3 weeks. I posted here several months ago about some of my troubles with dealing with it and appreciate al the replies I got. It is very frustrating and depressing. People who don't have cvid do not understand how you feel. Feeling rundown and crappy wears on you and nor having people around you that understand is very difficult. My monthly infusions have gone good although still stuck with a severe sinus infection and now I found that lungs are being affected by it. I struggle to get out of bed every day. But I am getting ready to start weekly home infusions. So maybe I will feel better. I don't get on here very often but I will try to more often. I am glad to atleast have this group. Knowing that I am not totally alone helps. I just take one day at a time

After 58 years of chronic respiratory, GI and multiple other sicknesses, I was diagnosed with CVID in 2016. Navigating information myself was the only way to get answers. Many sites like: IGLiving.com, PrimaryImmune.org and even IPOPI have given me answers. I joined My IGLiving and received a ton of information as well as a medical advocate to just talk with - no medical advice but an encouraging voice on the phone. I am on my 2nd doctor and 3rd treatment in less than two years (both IVIG and SVIG) and this last SVIG one is working. The best advice I've received - "every time you change treatments or change doctors - expect a year of roller coaster effects after each change". I might add - every insurance company crisis - since I now have to go back on IVIG until it is resolved. Also - videos on YouTube - idfreelstories and Immune Deficiency Foundation have been encouraging and helpful. We are not alone.

What state are you in?

I am New York - if you were asking NetteM

Several months ago my Rheumatologist sent blood work off to check for RA, came back negative (good old Osteoarthritis). However, bloodwork came back showing my protein level was low, blood work was run a second time with the same results and I was referred to a Hematologist. That office never rang me back with an appointment so I figured my Rheumatologist was erring on the side of caution and dismissed it. Couple of weeks ago I had my annual physical and mentioned it to my Internist and he was dismissive but said if I wanted him to he would run the test. Came back I am very low on IgM and slightly low on IgA. He doesn't have a concern, but I do! Any advice?

For Thistlegirl - keep looking for a doc that cares. You'll have to do a fair amount of research on your own. Please realize that there are a wide variety of symptoms and secondary conditions related to CVID. Your case is likely to vary a bit from others on this forum, too. The thing that will help is finding a good doc and realizing your "new" normal. I have had to "embrace the suck" for 16 years but I find a way to deal with it most of the time. Aside from the usual "things to watch out for", fatigue is my biggest enemy these days. I get a lot of support from my spouse.