@Gingergrrl -what lead me to get the CVID diagnosis or the desire to search for something other than the CFS diagnosis is because all of a sudden I was having a ton of allergies to things, like overnight. And the fact that pain was going with it. I could eat cheese here and there and gluten, but all of a sudden it was like I just couldn't. I had been diagnosed with CFS back in 1989, but in 2012, I had something so different come along. Also, all of these colds, infections, etc that would last for months.
So, I was diagnosed with CVID after the IGG and IGA levels were super low and then put on IVIG. I was so excited. I was told it would cure me and make me feel normal. My first trial was with privigen. Privigen made me have a horrible migraine and diarrhea non stop. Then I was given Hizentra...I and such a horrible reaction to that that I was honestly scared to try anything else. My heart was about 120 BPM on it and I could not get out of bed. Then I was put on Gammaguard, which at first seemed great. I would have IV Benadryl, lots of fluids in an IV with it, etc..plus tons of drinking water. After about 3 IVIG's with this, I felt psychotic. I had a rash all over and I couldn't sleep at all plus my pain was out of control. The last time I had GG, the nurse had to stop it because my throat closed up on it and I had to go right on prednisone.
It was a total of 6 months of pure hell and I said screw it, I would rather die than continue. This was back in 2014.
It totally brought to the surface MCAS. My kidney levels were elevated, my blood pressure was like 140 over whatever. Normally it's 90/60. It was crazy.
I would do it again, but in much smaller doses and not in heaping IVIG doses. I would do sub-q, but I think that's even harder to get covered now. I can't remember, but I think she said that. I honestly don't think it would be covered with my numbers not being low. I think my rheumatologist has a few on Ritux. I don't know how but he is kind of a wizard with getting people on stuff. I think because of the neuropathy and the fact that my brain MRI showed inflammation. I think that is why he would be able to put me on it. Sjogrens can be deadly for some patients and on the Sjogrens forum I am on, a few are on it. Also, maybe because I am near Philadelphia, there are so many studies and things done at the major hospitals here or in Bethesda which isn't far from me.
I am hoping this Anne Maitland, if she will see me will give me some insight. The lymphocytes are super concerning to every immunologist because I have the amount of lymphocytes of an AIDS patient. They call what I have "non HIV AIDS." It's very dangerous and cancer or viruses could make me very very sick, but there is nothing they can do for it. No medication.
I agree with you. You deserve IVIG just like any CVID patient of those who take it. You need it. I am praying you get it. Get approved. Do you still travel all the way up to Stanford or nearby? I can't remember who you see.