My son has POTS, SIBO, MCAS and IBS. He was 6 feet 2 and 118 pounds when we started scIG. He couldn’t hold food down. We started over a year ago, and we coupled it with FMT (crapsulas). He now can be in school full time and weighs 170. He no longer meets criteria for POTS or MCAS since his symptoms have remitted.
This is fantastic and very helpful, thank you! Would you be so kind as to adding a reference to a scientific paper linking the value of IgG therapy with regard to COVID? So that I can show it to doctors as proof to ask for this therapy. Thanks ever so much for all the great stuff you do for this community!
Thanks! This is really valuable work. Looking forward to seeing more of the results, I plan to use it as a guide for any further supplements & medication I look into. Sadly I don't know if IVIG is even a possibility here in the UK.
Previously IVIG wasn't recommended for me/cfs. I strongly believe IVIG needs to be trialed for me/cfs due to the observational data presented by LongCovidPharmD. The data from such a trail is essential to amend or refute the suggestion presented in the link below.
I use an inhaler that allows immunoglobulin to pass through the blood brain barrier. As a result you can use a much smaller amount of IG to achieve similar results to IVIG/SCIG. The inhaler is expensive though. It’s from kurve therapeutics and the IG is privigen.
I was using it for pans initially but it’s helped with fatigue. All in all, this is something you can do at home and use long term. If you can afford the $5,000 inhaler but that’s a one time purchase really. The privigen isn’t cheap either but that’s much more affordable especially if it allows one to go back to work. There’s no studies in this device for cfs I think I’m the first person to use it who has the condition but it does work. I actually started using insulin too which is cheap otc at Walmart and the privigen IG combo is a game changer. I also use peptides in the inhaler for my brain and glutathione. The CEO of the company is a really cool smart caring person and if other people used it and got similar results he would definitely try to get an orphan study funded for fda approval. We’re trying to do this for pans and the reason is we need fda approved treatments that are covered by insurance for the majority of people to be able to afford and be helped by said treatments.
My son has POTS, SIBO, MCAS and IBS. He was 6 feet 2 and 118 pounds when we started scIG. He couldn’t hold food down. We started over a year ago, and we coupled it with FMT (crapsulas). He now can be in school full time and weighs 170. He no longer meets criteria for POTS or MCAS since his symptoms have remitted.
Hi May I ask what was the dosage and IVIG product? When did the first improvements show up. Thanks!
This is fantastic and very helpful, thank you! Would you be so kind as to adding a reference to a scientific paper linking the value of IgG therapy with regard to COVID? So that I can show it to doctors as proof to ask for this therapy. Thanks ever so much for all the great stuff you do for this community!
Thanks! This is really valuable work. Looking forward to seeing more of the results, I plan to use it as a guide for any further supplements & medication I look into. Sadly I don't know if IVIG is even a possibility here in the UK.
This is really fascinating and so well organized (as usual). Thanks for your work!
Previously IVIG wasn't recommended for me/cfs. I strongly believe IVIG needs to be trialed for me/cfs due to the observational data presented by LongCovidPharmD. The data from such a trail is essential to amend or refute the suggestion presented in the link below.
https://www.jacionline.org/article/S0091-6749(06)00178-3/fulltext
I use an inhaler that allows immunoglobulin to pass through the blood brain barrier. As a result you can use a much smaller amount of IG to achieve similar results to IVIG/SCIG. The inhaler is expensive though. It’s from kurve therapeutics and the IG is privigen.
I was using it for pans initially but it’s helped with fatigue. All in all, this is something you can do at home and use long term. If you can afford the $5,000 inhaler but that’s a one time purchase really. The privigen isn’t cheap either but that’s much more affordable especially if it allows one to go back to work. There’s no studies in this device for cfs I think I’m the first person to use it who has the condition but it does work. I actually started using insulin too which is cheap otc at Walmart and the privigen IG combo is a game changer. I also use peptides in the inhaler for my brain and glutathione. The CEO of the company is a really cool smart caring person and if other people used it and got similar results he would definitely try to get an orphan study funded for fda approval. We’re trying to do this for pans and the reason is we need fda approved treatments that are covered by insurance for the majority of people to be able to afford and be helped by said treatments.
Well, now I wish I could try it but my insurance company doesn't allow it under any condition that might be applicable. Sigh.