Just to stop by and give another update.
I think IVIG did make a difference but it was small. The other thing is I was not able to do the 12 weeks consistently. Between having trouble getting vein access a few times, COVID, waiting to get a port, and doctors trips... The 12 weeks was more like 18-20 weeks. It has now been almost 2 months since my last dose.
We retested using the Quest panel and it was reconfirmed positive for VGCC on theirs as well. Waiting to see how the IGGs and IGMs are doing and if insurance is going to approve another round.
I think I've been able to make my life better by trying to live life without over doing. Between getting good sleep, making some diet changes, and the biggest is not overdoing it has been helpful. Also knowing what is causing all of this pain has really lowered my stress levels.
Realizing that my PEM hits 2-3 days later and my mentality wanting me to push through is what can drive my GI tract, fatigue, and muscle pain off the cliff.