Why antibiotics are not fun

Well the cold-like illness that I have been struggling with since February is finally starting to ease up. I'm coughing less often, and the coughs sound a lot less like a moderately successful attempt to bring up a lung. I'm also no longer going through a box of tissues a week. Best of all, my ears, which have been constantly plugged, are finally clearing up and I am no longer asking everyone to repeat themselves and watching TV with subtitles. All this is partially due, no doubt, to the IVIG treatment starting to have a gradual effect. It also doesn't hurt that I currently have nothing to do but sleep and relax until I start a summer job.  However, I'm sure the antibiotics my primary doctor prescribed are also playing a large factor. Unfortunately.



As I understand it, one of the problems of having CVID is that when you get sick, you are sick for far longer than a normal person, and you often need a much stronger and prolonged course of treatment. Hence, my family physician prescribed a very strong and apparently rarely used antibiotic to help clear up my ears and sinuses.  I am to take the antibiotics for two weeks, with option to refill for another two weeks if I don't feel like I'm better.  However, since day 2 of being on the antibiotics ended with me incapacitated with indigestion, the worst headache of pain I ever remember experiencing, and vomiting which has left me weak and with a delicate stomach and a slightly less painful headache the day after, I feel disinclined to get a refill. 

On the plus side, I actually managed to hear from my immunologist when I called one of his offices yesterday seeking more information, since I'm currently lost and adrift as to what the next step is. Turns out, as he is a very busy man, he had delegated a number of tasks to other doctors and staff. Thus, someone was supposed to have called me and talked to me about what the IVIG treatments meant, what I could expect, how to prepare, etc. so that I didn't go in uninformed. Apparently said person felt making the arrangements for the treatment was enough. I also learned that I am supposed to get the treatment every four weeks, and that I should have a follow up visit with my immunologist at the end of the month to see how my immunoglobulin levels are doing. 

Now that I know the general lay of the land I feel a lot better. Which, I suppose, is part of the idea behind the phrase "knowledge is power".

How it all began

I'm not a big blogging person. I'm big into the whole "my life is private, go away" scenario. I do believe in the therapeutic power of writing, which explains the numerous half-filled journals scattered around my life. However, as my dad pointed out to me, the point of blogging about this particular aspect of life is not as much therapeutic for myself as it is helpful for someone else. Either someone who wants to understand what I am going through, or what someone else they know with CVID is going through. Or, more personally important, someone like me who was diagnosed with this out of the blue and is feeling lost and confused and full of despair and questions because they're not sure what is going to happen, all they know is that their life has completely changed. So with that in mind, here goes nothing....


It's amazing how the big moments in life attain a pristine, crystal clear quality in one's mind, like they're trapped in a bubble and at anyone moment you can step inside and relive that moment. Its not true of course. Psychologists have long since shown that our memory is not perfect, and if anything we are guilty of invention, of adding details that did not originally exist, either for self-preservation or self-improvement. Still, it feels that way. I can distinctly remember the seconds before I was struck by a car while crossing the road when I was sixteen.  Or when I got the call that offered me an exclusive spot in the Ph.D. program I had thought was now beyond my reach.

So it is that I can remember the call from my immunologist to inform me that he believed I had CVID.  It was my first day of spring break, my last semester of undergraduate college.  I remember that I was excited to finally get some answers. I had been sick on and off - more on than off - for over two years, and had been suffering more recently from a number of strange eye infections and painful lesions. I thought I had a Behcet's syndrome, a different rare immune system disease. Turns out I was wrong. I remember the feeling of fear when I learned that my immunoglobulin levels were over 400 counts lower than they should be. I remember the feeling of despair when I learned that there was no cure.

After the initial round of testing, which included vaccinations to see if I could produce antibodies in response (I can't) and blood tests to see if I have any antibodies to vaccinations I got when I was younger (I don't), I haven't really gotten any solid information.  Most of what I know I learned from various websites, some of which are specifically for individuals with immunodeficiency, like this one.  I'm frustrated that I haven't been able to sit down and talk with my immunologist about what it all means, though it has been two months since his first phone call.  On the plus side, I have started the typical treatment for CVID, immunoglobulin replacement therapy, in which I receive immunoglobulins that have been distilled and purified from the blood of donors and infused intravenously to boost my crippled immune system.  I am told that this treatment will help me feel better, more energetic, and will help me from getting sick so easily. Luckily I do not react strongly to the IVIG treatment, and the worse side effect I have experienced so far is fatigue.

I just wish I had some more answers.