Intravenous immunoglobulin (IVIG) for long Covid

Posted by potudy @potudy, Jul 8 10:59pm

I have severe long COVID symptoms. Has anyone been treated with Intravenous Immunoglobulin to treat this disease who could please share his/her experience?

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Thankyou!Please let me know how the Ivermectin works out.So I only had the initial two dose Pfizer.I think what happened to me is I was at the Beach for the first time without wearing a mask.I had not even had a cold in three years.I think I picked up covid at the Beach not knowing I had it and had an iron infusion around the same time.Since an iron infusion lowers your immune system I think covid just completely attacked my body.I had an initial reaction which I believe was the virus attacking my nervous system.It was like a panic attack or what I thought might be a stroke.From that point on every symptom you can imagine came up the next 6 months until I became bedbound.All Brain MRI'S clear.A bunch of other Autoimmune and Neurolgical Autoimmune clear.One EMG was normal the other was slightly abnormal,but the neurologists said it was possibly a metabolic muscular issue.No one knows.I just keep on going from Specialist to Specialist.Does your mom have any vagus nerve Issues?Any problems with signal loss like going to the bathroom or thirst?Has she tried Cymbalta?Apparently alot of LC people are having luck with that.The Doctors are treating LC like a Brain injury.A girl from another site who was unable to walk at all can walk perfectly fine now.I am thinking about taking a low dose to see.I have also seen people getting better with Hormone Replacement too.Weird.I think that Long Covid and Vaccine Injury symptoms are almost identical.

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@kentkemmerling1949

I have had 10 rounds of infusions of Immunoglobulin and am scheduled for another 8 more. The scientific literature supports this usage for treating neuropathy and I must say that it helped my problem in my feet. But, my dizziness and poor balance were not affected and that is the problem I would like to get treated. I can only walk using a walker and that is not handy. I was very active and “outdoorsy”, but no more.

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May I ask how you the approval process for coverage of the IVIG went for you? My insurance repeatedly denies it as an investigational drug. My diagnosis was autoimmune small fiber neuropathy.

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My neurologist is a 76 year old doctor that is well respected and owns a large neurology company with maybe 50 other professionals. I don't know if that was what went on, but I am sure it didn't hurt. My insurance is Medicare.

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@jrg54

May I ask how you the approval process for coverage of the IVIG went for you? My insurance repeatedly denies it as an investigational drug. My diagnosis was autoimmune small fiber neuropathy.

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My IgG levels are extremely low from Multiple Myeloma treatments, my Oncologist got my insurance to approve it.
But I’m not supposed to start it for 2 weeks and now I have Covid. Trying to find out if I can get it started sooner. My Covid symptoms are quite mild.

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@waggsaw

My IgG levels are extremely low from Multiple Myeloma treatments, my Oncologist got my insurance to approve it.
But I’m not supposed to start it for 2 weeks and now I have Covid. Trying to find out if I can get it started sooner. My Covid symptoms are quite mild.

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I'm glad you will be able to receive the treatment. Multiple myeloma is a condition where IVIG is considered a medically necessary therapy. Unfortunately, IVIG is not listed as medically necessary for small fiber neuropathy even though multiple clinical trials have shown it can be very effective when the cause is known to be autoimmune. However, some patient are getting it approved and I was hoping to learn how so that I can a similar strategy. I hope all is well and you do not have any further road blocks. I wish good health to you.

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