ChookityPop
Senior Member
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What dose did you get?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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There are older studies, some of them show a benefit for high-dose IVIG. But they used Fukuda criteria for CFS diagnosis which are not as specific as canadian criteria.IVIG won’t cure MECFS
Awesome, I will check that out! thanks@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.
So the first dose with 2g/kg and then 1g/kg afterwards? Great info!@ChookityPop
The dose that cured some ppl i know with Cfs was 2g/kg initial dose, followed by 1g/kg maintenance dose.
yes and my insurance doesn’t pay for anythingIf insurance doesn’t pay for it it’s extremely expensive like $150k+ for course of treatment?
An
yes and my insurance doesn’t pay for anything
An
yes and my insurance doesn’t pay for anything
If you dont weigh around 5kg i guess your math is wrong. Because the content of immunoglobulins in a Panzyga infusion is 10%. So it would probably cost you 12110€ followed by 5790€.
I love your comments ❤️IVIG won’t cure MECFS
But it could potentially increase quality of life to some extent right?IVIG won’t cure MECFS
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?