What is the optimal dose/autoimmune dose of IVIG?

gbells

Improved ME from 2 to 6
Messages
1,409
Likes
1,665
Location
Eastern NC USA
I don't think IVIG works for ME due to chronic viruses because of all the checkpoints that are blocking apoptosis. The point of IVIG is to trigger apoptosis but it can't. I think doctors have abandoned it.
 

Badpack

Senior Member
Messages
309
Likes
771
@ChookityPop

The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.

Dont know if you can speak german, but here is Dr. Stingl from Austria. He treated a lot of Cfs Patients. And he said the only 2 things that helped a lot of Cfs ppl in his doctors office are Ivig and Mestinon.

 

ChookityPop

Senior Member
Messages
203
Likes
195
@ChookityPop

The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.

Dont know if you can speak german, but here is Dr. Stingl from Austria. He treated a lot of Cfs Patients. And he said the only 2 things that helped a lot of Cfs ppl in his doctors office are Ivig and Mestinon.

Awesome, I will check that out! thanks:)
 

GlassHouse

Senior Member
Messages
102
Likes
314
I get 35 grams per week. I’m 5’8” 145 lbs. I get the subcutaneous version (Cuvitru). It’s made a noticeable difference in my POTS but took around 5 months to notice the benefit (my standing heart rate is now around 90-100 instead of 150-200). I realized that something had changed when I wasn’t reaching for my Propranolol most days.

My insurance covers this but we fought with them continuously for 2 years and then ended up filing a complaint with the Department of Managed Healthcare.
 

ChookityPop

Senior Member
Messages
203
Likes
195
I get 35 grams per week. I’m 5’8” 145 lbs. I get the subcutaneous version (Cuvitru). It’s made a noticeable difference in my POTS but took around 5 months to notice the benefit (my standing heart rate is now around 90-100 instead of 150-200). I realized that something had changed when I wasn’t reaching for my Propranolol most days.

My insurance covers this but we fought with them continuously for 2 years and then ended up filing a complaint with the Department of Managed Healthcare.
Thats great! Do/did you have issues with blood pooling in the legs etc prior to starting the IVIG?
 

GlassHouse

Senior Member
Messages
102
Likes
314
Thats great! Do/did you have issues with blood pooling in the legs etc prior to starting the IVIG?
I do think it has been helping with blood pooling in my legs. They feel less heavy/ achy. I’m planning to do another lean test to compare to my previous results. During my last lean test my hands and feet turned purple and swollen and the rest of my body was a mix of red and white blotches, and I got progressive electric shocks in my hands and feet (starts out like tiny pin pricks and progresses to huge jolts of electricity that makes my body jerk and I have to stop the test). The lean test is the only time I’d stand upright and stay still. I’ve had POTS since I was 12 (I’m 30 now, and got ME/CFS at 21) so I’m used to always moving my legs to prevent blood pooling.