Apheresis or ivig treatment for long covid?

Posted by fatherofsonwithlc @fatherofsonwithlc, May 14, 2023

Does Mayo provide these treatments for long covid? Does anyone have any experience?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@jhamil01

Thank you for the advice. If your new treatments are helpful in anyway, please let me know.

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I have extreme Fatigue and Gut issues. The gut issues have lessened with this supplement and I have gone off the steroid drugs. I take 2 times daily orally. The fatigue is spotty. By that I mean i have a couple of good days and then several where I sleep 18 hours a day like yesterday, those can last for days.
I am grateful for the lessening of gut issues. I am hopeful that the Igg will help the gut long term.

As everyone I just keep looking.

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@phillipskey1951

I have extreme Fatigue and Gut issues. The gut issues have lessened with this supplement and I have gone off the steroid drugs. I take 2 times daily orally. The fatigue is spotty. By that I mean i have a couple of good days and then several where I sleep 18 hours a day like yesterday, those can last for days.
I am grateful for the lessening of gut issues. I am hopeful that the Igg will help the gut long term.

As everyone I just keep looking.

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Hello,
I love you attitude - it's everything.
We keep on keeping on.
Cheers to more good days

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@colleenyoung

Welcome @fatherofsonwithlc, I'm tagging fellow long Covid members like @leann100 @jaymier @autoimmunesearch @autoimmunesearch who have experience with IVIG treatments or apheresis or both.

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I have Long Covid and vaccine injury. I have been receiving IVIg since 7/2022 with much improvement. I am willing to answer any questions regarding my several autoimmune conditions I developed post covid and mrna vaccine and subsequent treatment with IVIg and more recently adding in TNF inhibitor to help suppress my dysfunctional immune system.

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@rhig6203

I have Long Covid and vaccine injury. I have been receiving IVIg since 7/2022 with much improvement. I am willing to answer any questions regarding my several autoimmune conditions I developed post covid and mrna vaccine and subsequent treatment with IVIg and more recently adding in TNF inhibitor to help suppress my dysfunctional immune system.

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When did you develop long COVID?
where do you receive your treatments

Were you in a severe state before receiving your treatments?

What do you think help you the most? IVIg or TNF inhibitor?

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@jhamil01

Cognitive issues and fatigue. I actually was able to get IVIG several months ago, but it had no effect. Thanks for your info and good luck to you!

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IVIG didn’t help? I am planning to look into it and see if works, or not.
Even if insurance won’t pay, I will pay.
Long covid has destroyed my life..and I would like to get it back. If the cytokines that are on hyperdrive can be removed and replaced with normal level cytokines- I think I can actually be cured.
This thread is helpful.
Thank you

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I have long COVID. I have been getting IVIG infusions for a year now. My neuropathy in my feet is definitely better, but other symptoms of long COVID are no better.

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@theressa

IVIG didn’t help? I am planning to look into it and see if works, or not.
Even if insurance won’t pay, I will pay.
Long covid has destroyed my life..and I would like to get it back. If the cytokines that are on hyperdrive can be removed and replaced with normal level cytokines- I think I can actually be cured.
This thread is helpful.
Thank you

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So sorry you are dealing with this as well. Long covid destroyed mine as well. Yes, unfortunately IVIG did nothing for me, but I totally understand your eagerness to try. If you are like myself, you will try any and everything to be normal again. Best of luck!

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@rhig6203

I have Long Covid and vaccine injury. I have been receiving IVIg since 7/2022 with much improvement. I am willing to answer any questions regarding my several autoimmune conditions I developed post covid and mrna vaccine and subsequent treatment with IVIg and more recently adding in TNF inhibitor to help suppress my dysfunctional immune system.

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Hi, I just saw your comment and would like to ask you how often and what dosage of IVIG have you received and how long after getting it did you start noticing improvement in your symptoms. Thank you

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@jhamil01

Cognitive issues and fatigue. I actually was able to get IVIG several months ago, but it had no effect. Thanks for your info and good luck to you!

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Did your insurance cover it? If not, what was the out of pocket cost?
My immunologist didn't recommend it, he said it can make people feel sicker

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@kentkemmerling1949

I have long COVID. I have been getting IVIG infusions for a year now. My neuropathy in my feet is definitely better, but other symptoms of long COVID are no better.

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How did you get a doctor to order it? was it your PCP or a specialist? Thank you

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