IVIG approval resources

Because IVIG treatment is costly, patients and doctors generally need to build a case that the treatment is warranted. One path is to look for evidence of autoimmunity through auto-antibody testing. Auto-antibodies plus symptoms would support the diagnosis of an autoimmune condition. IVIG has been used in the treatment of auto-immune SFN / SFPN (small fiber polyneuropathy), various autoimmune diseases such as multiple sclerosis, and may show promise for POTS.

For more information on auto-antibody testing for SFN and POTS, see this page.

Multiple sclerosis is diagnosed through conventional medical tests and does not require novel, unconventional auto-antibody tests to diagnose.

Scientific papers discussing IVIG treatment of conditions commonly found in long haulers

• How We Treat Autoimmune Small Fiber Polyneuropathy with Immunoglobulin Therapy - https://doi.org/10.1159/000498858

Our experience with the use of IVIg in patients with autoimmune autonomic neuropathy matches that which has been reported by Oaklander and Flanagan with a response rate of approximately 75–80%. Many patients improve by 80–90% of their pre-illness level of functioning.

• IVIG for apparently autoimmune small-fiber polyneuropathy: first analysis of efficacy and safety - https://pubmed.ncbi.nlm.nih.gov/29403541/

Overall, 74% of patients rated themselves 'improved' and their neurologists labeled 77% as 'IVIg responders'; 16% entered remissions that were sustained after IVIg withdrawal. All adverse events were expected; most were typical infusion reactions. The two moderate complications (3.6%) were vein thromboses not requiring discontinuation. The one severe event (1.8%), hemolytic anemia, remitted after IVIg discontinuation.

• Evidence of small-fiber polyneuropathy in unexplained, juvenile-onset, widespread pain syndromes - https://pubmed.ncbi.nlm.nih.gov/23478869/

Treatment with corticosteroids and/or intravenous immune globulin objectively and subjectively benefited 80% of patients (12/15).

Note: the article above describes treatment with corticosteroids. Some long haulers see a very noticeable increase in symptoms with corticosteroids so a conservative approach towards corticosteroids may be prudent.

from https://pubmed.ncbi.nlm.nih.gov/29326369/

• Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment - https://pubmed.ncbi.nlm.nih.gov/29326369/

A patient with severe postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) received immunotherapy with low-dose naltrexone (LDN) and intravenous immunoglobulin (IVIg) and antibiotic therapy for small intestinal bacterial overgrowth (SIBO). A dramatic and sustained response was documented.

• New diagnosis of multiple sclerosis in the setting of mRNA COVID-19 vaccine exposure - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8656147/

We report a series of 5 cases of newly diagnosed MS following recent exposure to mRNA COVID-19 vaccines. [...] Neurological manifestations and clinical course appeared to be typical for MS including response to high dose steroids in 4 cases and additional need for plasmapheresis in one case.

Note: Plasmapheresis refers to the combination of IVIG and the removal of antibodies via apheresis. See the list of approaches page for more information on plasmapheresis.

Support group

The IVIG for V & C19 support group is a place where patients share information about sympathetic doctors, information on testing for autoimmune SFN / small fiber polyneuropathy, etc. etc.