Recently diagnosed with CVID and I have some questions

[camikkelson]

Hello, I'm new to this site and the whole notion of immuno-deficiency. I've always had a weak immune system but never knew there was a name for it let alone sites like this. I'm a 27 year old athletic male and I was recently diagnosed with CVID.

My whole life I've had periodical infections either in the ears, sinuses, or lungs. Every time I've been given antibiotics and sent on my way. It wasn't until college that I began to notice a trend: Every time I got a cold I would get bronchitis. It began to happen more frequently (3 or 4 times per year) and I started to drill doctors on why it could be happening. They would always just treat the infection with antibiotics but never look for a reason why they occur so often.

In 2013 I got salmonella from some undercooked meat and it completely wreaked havoc on my system. I started to get sick every other week. It seems like twice a month I would come down with fevers and chills, all while battling a persistent cough. I was given round after round of antibiotics and told it would go away eventually.

In 2015 I saw an ENT who said my sinuses are in such bad shape and antibiotics wouldn't fix them. I would need surgery to correct a deviated septum and open my sinus passages.

In August 2015 a spider (still not sure what kind) bit me on the hand while on a backpacking trip in Yosemite and it also wreaked havoc on my body. I was in the hospital for 7 days, 3 of which I don’t remember since my fevers were topping out at 106.5 and my WBC was dangerously low. They tested my blood for everything and couldn’t come up with a reason why this was happening, but eventually my WBC stabilized and they sent me home with Levaquin to fight off the pneumonia I had developed in care. I also quit my job to focus on healing since I hadn’t been operating at 100% in over 2 years.

In October 2015 I had the sinus surgery and was told they removed a lot of obstructions (polyps, I believe) and that it went really well.

I began seeing a naturopathic doctor out of state to see what could be wrong with my immune system. She tested my blood and said my Iron and Vitamin D levels were super low and started me on a heavy regimen of vitamins and supplements including Iron and Vitamin D drops). I also began a gluten-free and dairy-free diet.

I also started seeing an allergist who determined I was allergic to trees, grass, weeds, and cats and started me on immunotherapy shots.

Since the surgery I had 4 cases of severe infection either in my lungs or sinuses as well as my 2nd case of shingles (rash on my hip). I took Acyclovir, 1 round of levaquin and 3 rounds of augmentin. All of them seemed to help while I was taking them but the fevers and other symptoms would come back within days of stopping.

Finally, the allergist ordered a blood test to check my immunoglobulin levels and they came back extremely low:

IgA <4 (mg/dL)
IgG <10 (mg/dL)
IgM <1 (mg/dL)
IgE <2 (kU/L)

He gave me a preliminary diagnosis of CVID but referred me to an oncologist/hematologist to go over more blood tests and reasons why this could be so low. I’ve been taking augmentin once a day for the past 2 weeks just so I can function and work while I wait for blood tests and doctor appointments.

I’ve been doing a lot of reading online about this condition and other peoples’ experiences but I have a few questions of my own before I see this other doctor:

1. Is this a lifelong condition or something that will fade out after a while doing IVIG?

2. Are you able to work and maintain a normal life while doing IVIG? SCIG?

3. What other complications arise from having CVID? I’ve read that I could be more susceptible to cancer and that permanent lung damage is possible.

4. Anything I should be aware of or know going into this? I’ve been through a lot when it comes to health problems but I’m generally a very healthy person. I exercise, eat and sleep well, have a healthy sex life (except when I’m sick). I’m aware I could have it much worse (as I’ve read on this and other forums), but I know something’s gotta give at some point.

Any advice or wisdom would be appreciated. I'm taking this all in stride but it sometimes hits me pretty hard.

Thanks,
Christian

[mothergoose]

This is a life long condition, but number of infections improves after being on IGG for a few months. IGG may or may not bring other things to deal with.

2. You can work and live a fairly normal life. You might have to make some adaptation's to your life style. For example I battle fatigue, so I manage my life around that. For me this is not as bad as being sick all the time.

3. I think and I am not sure that it is felt that this condition can make you more suspectable to cancer but for the most part this is not as much of a problem as it is thought to be. As far as lungs my understanding is that once on IGG you should not be getting the lung infections that damage yor lungs. I breath much better now that pre diagnosis.

4. I believe you will fell much better on IGG, it can take 6 months of treatments before it will have a full effect.

[gillie]

Hi Christian. Welcome to the forum. I don't come on here as often as I used to because in the main, I'm well. Like you, I have CVID. Yes, it is a life-long condition, so I agree that that part takes some getting used to. I have ivig infusions every fortnight and I have a rotation of 2 prophylactic antibiotics, each taken for 6 weeks at a time. By the time that I was diagnosed, I had lost some level of hearing, had some lung damage, [which doesn't impact my life at all] and, like you, had had nasal surgery.However, I don't have a lifetime's worth of many infections behind me.
I'm a cancer survivor. It's true that immunodeficient people have a slightly raised chance of developing cancer, and I was unlucky, but after 9 months of intensive treatment in hospital, I came out alive and am now not just in remission but cured.While in hospital, because I was so vulnerable to infection, I caught pneumonia twice and fungal meningitis once.Nonetheless. I'm well again now and CONSIDERABLY thinner!!
As Mothergoose has told you, ivig isn't a quick-fix. You'll have to be patient while your body gets used to having the means to clean up all the bugs in your system, but after a while, you'll feel a whole lot better, believe me.