So, just an update, I was in fact diagnosed with CVID. Although some of my antibodies responded to the Pnemonvax23, there were enough antibodies that did not respond, which means treatment is necessary. Treatment means subcutaneous gamma globulin (plasma) every 2 weeks indefinitely as I understand it now. Thankfully, we have been approved for a 2 month free trial while we await insurance approval. I should be getting a call from the nurse company tomorrow to set up the dates for in home training. I found this picture of a general set up, however, I will have 4 infusion sights until I have enough gamma magic energy to lose more weight. So multiply everything you see by 4.
Luckily, my immunologist feels like he caught it early, because most people are much more sick than I have been. Many are not diagnosed until they have been hospitalized every month, and are unemployed due to the extreme fatigue. This has been difficult for my family, doctors, and friends to understand. I don't look sick. I am tired all the time, which can be mistaken for laziness or depression (which I also suffer from). Sure I've had chronic sinus infections, but it must be because I smoke. Over the last 9 years, since I experienced early ovarian failure, I have been to many doctors, I explain my joint pain and muscle fatigue. I tell them I have constant diarrhea and I am always exhausted. They do a basic thyroid test, check my gallbladder, and run the routine tests. Everything comes back normal. It's all in your head. Year after year. I have seen a neurologist for electrocution sensations deep in my brain. He sent me to an Ear, nose and Throat doc because he truly thinks I have sleep apnea and those sensations are due to over exhaustion. Sleep study is in 1 week. It was only 5 years ago that my weight started to skyrocket, my cholesterol and blood pressure was high for the first time in my life. I figured it was because my life had become nearly stagnant. I could get to work, do everything necessary for my family, and finish the evening coping the best way I know how. I talked to my doctor about my alcohol intake, assuming that was making me sick. I cut back, ate better, but working out was something I felt to be impossible. AGAIN, I feel like a lazy piece of crap that cannot commit, and I'm pretty sure my doctors and even my husband thought the same way. Snap out of it, Jamie! You were a gymnast, you can do it. But my doctor just kept switching my anti depressants/anxiety meds. We tried a diet pill, which had no effect on my appetite or my energy. It had only been 7-9 years ago that I was going to school full time, taking care of 2 little boys, and working 4 (yes 4) part time jobs to make up for the child support I never got. I had a wonderful boyfriend that helped both financially and with the kids, but my days ran from 6am- 3am for years. I could not understand how all of a sudden I felt so terrible.
And then I met Dr. Pinna...
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