I have severe ME/CFS and am bed-bound. I had 9 months of IVIG, every 2 weeks, and it did very little for me. With each infusion, I would have 2-3 days after the infusion, and prior to the next infusion, where my energy was drained to the point of not being able to open my eyes. I also felt short of breath during these episodes. The duration varied from 2 hours to 12 hours. After 9 months, I switched to subcutaneous and the "crashing" became worse. I think there was 1 day that I didn't have my energy drained. I stopped the treatment after one subcutaneous treatment.
It has been almost 8 months, and I am still having the same problems with my energy crashing. It feels different from a typical ME/CFS crash; I just don't know what else to call it. Some days I wake up feeling like I am in the midst of an episode and it can last for 12 hours. Other days, it may only last for 2 hours. My doctor has never seen this reaction, nor does she know what the mechanism causing it could be.
If anyone has had a similar experience or knows what is going on, I would be grateful to hear from you.
It has been almost 8 months, and I am still having the same problems with my energy crashing. It feels different from a typical ME/CFS crash; I just don't know what else to call it. Some days I wake up feeling like I am in the midst of an episode and it can last for 12 hours. Other days, it may only last for 2 hours. My doctor has never seen this reaction, nor does she know what the mechanism causing it could be.
If anyone has had a similar experience or knows what is going on, I would be grateful to hear from you.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
