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So, as a disclaimer, I am by no means a doctor, but I wanted to talk a little bit about my experience with CVID and what my symptoms were. When it comes to the various types of primary immunodeficiencies, it can be really confusing and scary. There are so many diseases out there and when searching on Google (I used to do this a lot), some intimidating things can come up.
For about 6 months, I knew something was wrong. I was convinced that it had to do with me living in college dorms and moving to a different state. I thought maybe it was allergies or black mold!? My mind was racing as I spent so many nights pondering what could be going on.
Now to the main point of this post: what are the symptoms?
I actually have only met one person with my disease ever, which is insane. So, I am going off of my own experience here. In brief terms, here are the symptoms I experienced before I was diagnosed:
It all started with an ear infection during the winter break of my freshman year of college. The doctor said that my lymph nodes were swollen and I should get tested for mono, which I thought made sense because I was so tired all the time. But, the mono test was negative.
After that, it was a string of strep throat and sinus infections over and over. After a while I realized that the oral antibiotics were not working, which is why the illnesses came back so quickly.
I was ALWAYS congested. I always had to have tissues around me, and it got to the point where I would throw up every single night from congestion. Absolutely awful. I would sit and drink water all night to try to help it.
Dayquil didn’t seem to work. Nothing seemed to work.
Anything would get infected that could. I had so many piercings that got infected. One time, I got a tiny cut on my cuticle and my entire finger was infected and my nail actually fell right off (gross, I know).
To sum it up – I was sick and tired. Sick and tired of being sick and tired. It just never stopped, it was an actual mystery. Why didn’t medicine work?
This went on for about six months until I decided I thought I had allergies to something in Colorado. I went to an allergist who was also an immunologist, and they took my blood. That’s when I found out about my disease.
I know that there can be other symptoms as well, including serious illnesses that have to do with the lungs, like pneumonia or bronchitis. I’ve heard that some people end up hospitalized before they are diagnosed.
Don’t freak out
If you relate to any of these symptoms, don’t freak out! You never know exactly what symptoms mean until you have actually gone to get tests from a doctor. I know that it is so easy to go out and look things up and begin to think that you’re on your death bed.
But, the body is a mysterious thing sometimes. You will be okay, as long as you seek medical help and refrain from panic.
The first step is getting to the bottom of it. Then, you can be on track to treatment and feeling better. Your doctor will help you figure out which treatment is best for you.
Before my diagnosis, I was so terrified. Now, years down the line, I am so happy that I found a doctor who took my blood, identified my disease, and helped me get started on treatment!