That makes sense to me. Think about LDN vs naltrexone. The lower dosage naltrexone (LDN) impacts the brain differently than the standard higher dosage of naltrexone.
I think it is similar but different and would love to hear thoughts on this. The dose of IVIG that I am doing is a standard dose for immune deficiency and is not considered "low" from that standpoint. If I had an immune deficiency issue then 24 grams is a decent dose (and there are people who do 5-10 grams). But for autoimmune dosing to attack my auto-antibodies, the dosing is much higher and for my weight starts around 54 grams and could even go above 100 grams (in a divided dose). Whereas LDN is always considered low dose regardless of your diagnosis or reason for taking it (i.e. some take it for Hashimoto's, some for ME/CFS, etc, but it's still LDN).
IVIG is more standardly approved for immune deficiency diagnoses (which I do not have) vs. autoimmune diagnoses. No doctor can explain exactly how IVIG works for autoimmune issues but there are cases of unbelievable recoveries even when we do not know the mechanism. And I think the exact mechanism of LDN probably is not known either?
My long-winded point
is that if someone was using regular dose naltrexone to treat drug addiction but instead took only LDN, it probably would not work. But in my case, I am taking a low dose of IVIG for autoimmune issues and yet something in it is working and I wish I knew what and why!
I am looking forward to hearing about more improvements after your third treatment
From your lips to God's ears... and thank you again for all of your ongoing support, GD.
It would super cool if you could transition off of the MCAS meds at some later point in time. Now that would turn a few heads.
I actually think this could happen although at the moment I am not touching my MCAS med regime and it is staying intact. Instead, every day I am testing new foods and have a list of about 20 things to try that I consider low to moderate risk and if this goes well, I have a list of the highest risk (histamine) offenders that I plan to slowly try one by one. The most shocking part to me since IVIG, is that I can tolerate very strong smells without them getting imbedded into my brain for hours/days and causing allergic reactions and agitation. Now I notice the smell (and it still annoys me) but that is it and it dissipates!
My MCAS started in March 2015 so it's been approx 1.5 years but I do believe that the IVIG may put it into remission. I don't believe it would be "cured" and I'd always be at risk and will probably always take a mast cell stabilizer and H1 and H2 blocker b/c I've had subclinical MCAS symptoms life-long (in hindsight) even before it became acutely severe in early 2015 with the anaphylaxis and hospitalization, etc.
Somehow, all of this must relate to these autoantibodies (the MCAS reactions, the muscle weakness, and autonomic problems/POTS, and the breathing/lung weakness). So to tie it all back to the leg lifts, the IVIG must be attacking the autoantibodies which allows my muscles to do more (i.e. the leg lifts) and allows me to tolerate more foods without allergic reaction. I am waiting for the day that it allows me to stand, breathe, and walk without a wheelchair for more than 60 seconds but so far that has not happened!
