Many thanks. My son has had LC for 15 months, not getting better, and I am searching for treatment that could help. He has very high level of autoantibodies (16 aabs significantly - even 10x - over reference levels) so Apheresis or ivig is of interest.
I would like to be added to this thread as a long covid sufferer since 2020 and currently very poor neurologic condition. I recently had plasmapheresis (INUSpheresis) in Switzerland and am no better, possibly worse if that makes any sense? I am actively looking now to get IV IgG treatments and am interested in any success stories.
I would like to be added to this thread as a long covid sufferer since 2020 and currently very poor neurologic condition. I recently had plasmapheresis (INUSpheresis) in Switzerland and am no better, possibly worse if that makes any sense? I am actively looking now to get IV IgG treatments and am interested in any success stories.
I would like to be added to this thread as a long covid sufferer since 2020 and currently very poor neurologic condition. I recently had plasmapheresis (INUSpheresis) in Switzerland and am no better, possibly worse if that makes any sense? I am actively looking now to get IV IgG treatments and am interested in any success stories.
I just found a doc that is giving me Pure Amino and Enteragam which is a medical food supplement. You also can find a IgG Plus brand on Amazon.
I too have had long covid since 2020, I hear it was the worst
variant. My issues are extreme fatigue and gut issues. The gut issues have lessened but still there. When I called Mayo, they said to look for an integrative medicine doctor and that is what I did. I hope it will help as all tests come out normal for all this time and it seems most don't know where to turn. Anything is worth a try. Good luck
Just sharing my experience with exploring IVIG: I’ve looked into IVIG for FGFR3 positive small fiber neuropathy (and I also now have long COVID), but it’s considered experimental so at the time I was told it was extremely difficult to get it covered by insurance. It’s also an expensive treatment, so my doctor said it pretty much always requires an appeal. I didn’t end up pursuing it. Most academic medical centers provide IVIG because it’s a treatment for other conditions, but finding a physician to order it and getting it cleared by insurance seems the barrier.
I’m not sure if that’s also the case with long COVID, but I’m suspecting it would be similar.
I just found a doc that is giving me Pure Amino and Enteragam which is a medical food supplement. You also can find a IgG Plus brand on Amazon.
I too have had long covid since 2020, I hear it was the worst
variant. My issues are extreme fatigue and gut issues. The gut issues have lessened but still there. When I called Mayo, they said to look for an integrative medicine doctor and that is what I did. I hope it will help as all tests come out normal for all this time and it seems most don't know where to turn. Anything is worth a try. Good luck
Just sharing my experience with exploring IVIG: I’ve looked into IVIG for FGFR3 positive small fiber neuropathy (and I also now have long COVID), but it’s considered experimental so at the time I was told it was extremely difficult to get it covered by insurance. It’s also an expensive treatment, so my doctor said it pretty much always requires an appeal. I didn’t end up pursuing it. Most academic medical centers provide IVIG because it’s a treatment for other conditions, but finding a physician to order it and getting it cleared by insurance seems the barrier.
I’m not sure if that’s also the case with long COVID, but I’m suspecting it would be similar.
Thanks for sharing. I’m sorry it didn’t work out. How many courses did you do? For my condition (small fiber neuropathy), I think they told me they’d usually do a 3-month trial.
Connect
Connect
Like
Helpful
Hug
Welcome @fatherofsonwithlc, I'm tagging fellow long Covid members like @leann100 @jaymier @autoimmunesearch @autoimmunesearch who have experience with IVIG treatments or apheresis or both.
-
Like -
Helpful -
Hug
2 ReactionsMany thanks. My son has had LC for 15 months, not getting better, and I am searching for treatment that could help. He has very high level of autoantibodies (16 aabs significantly - even 10x - over reference levels) so Apheresis or ivig is of interest.
-
Like -
Helpful -
Hug
1 ReactionI would like to be added to this thread as a long covid sufferer since 2020 and currently very poor neurologic condition. I recently had plasmapheresis (INUSpheresis) in Switzerland and am no better, possibly worse if that makes any sense? I am actively looking now to get IV IgG treatments and am interested in any success stories.
-
Like -
Helpful -
Hug
4 Reactions@jhamil01
I was thinking about trying the plasmapheresis. Were you hospitalized in your acute COVID phase?
I just found a doc that is giving me Pure Amino and Enteragam which is a medical food supplement. You also can find a IgG Plus brand on Amazon.
I too have had long covid since 2020, I hear it was the worst
variant. My issues are extreme fatigue and gut issues. The gut issues have lessened but still there. When I called Mayo, they said to look for an integrative medicine doctor and that is what I did. I hope it will help as all tests come out normal for all this time and it seems most don't know where to turn. Anything is worth a try. Good luck
-
Like -
Helpful -
Hug
1 ReactionJust sharing my experience with exploring IVIG: I’ve looked into IVIG for FGFR3 positive small fiber neuropathy (and I also now have long COVID), but it’s considered experimental so at the time I was told it was extremely difficult to get it covered by insurance. It’s also an expensive treatment, so my doctor said it pretty much always requires an appeal. I didn’t end up pursuing it. Most academic medical centers provide IVIG because it’s a treatment for other conditions, but finding a physician to order it and getting it cleared by insurance seems the barrier.
I’m not sure if that’s also the case with long COVID, but I’m suspecting it would be similar.
What symptoms are you trying to address?
-
Like -
Helpful -
Hug
2 ReactionsNo I was not. Only mild symptoms.
-
Like -
Helpful -
Hug
1 ReactionThank you for the advice. If your new treatments are helpful in anyway, please let me know.
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!
-
Like -
Helpful -
Hug
1 ReactionThanks for sharing. I’m sorry it didn’t work out. How many courses did you do? For my condition (small fiber neuropathy), I think they told me they’d usually do a 3-month trial.
-
Like -
Helpful -
Hug
1 Reaction