Editing IVIG approval resources

Because IVIG treatment is costly, patients and doctors often 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 (autoimmune) POTS.

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

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

== This is not a recommendation for IVIG ==

It is possible that IVIG is no better than placebo for many conditions (including those that you may have).  See [https://www.cadth.ca/sites/default/files/pdf/htis/2018/RC0962%20Neurology%20Off-Label%20IVIG%20Final.pdf this report] for arguments against healthcare spending on IVIG.  It references systematic reviews on the use of IVIG for various conditions.

Please find out about the likelihood of benefit, potential risks and side effects of medical treatments before you seek them out.

== Doctors have different opinions on IVIG and testing for autoimmunity ==

Some doctors will not want to prescribe IVIG (and to convince your insurance company to pay for it) even if you test positive for auto-antibodies and have evidence of an autoimmune condition.  You can ask your doctor/specialist about his/her opinion on IVIG and whether or not it would be considered if you were to test positive on autoimmunity tests.

Similarly, doctors have different opinions on the use of non-standard auto-antibody tests that are not currently mainstream.

== 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
<blockquote> 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.</blockquote>
* ''IVIG for apparently '''autoimmune small-fiber polyneuropathy''': first analysis of efficacy and safety'' - https://pubmed.ncbi.nlm.nih.gov/29403541/
<blockquote> 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.</blockquote>
* ''Evidence of '''small-fiber polyneuropathy''' in unexplained, juvenile-onset, widespread pain syndromes'' - https://pubmed.ncbi.nlm.nih.gov/23478869/
<blockquote> Treatment with corticosteroids and/or intravenous immune globulin objectively and subjectively benefited 80% of patients (12/15).</blockquote>
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 less risky.  (Other long haulers seem to benefit from corticosteroids.  So, they could be useful for long haul.)
[[File:Vasospam with cyanosis before and after IVIG.jpeg|thumb|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/
<blockquote> 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. </blockquote>
* ''New diagnosis of '''multiple sclerosis''' in the setting of mRNA COVID-19 vaccine exposure'' - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8656147/
<blockquote>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.</blockquote>
Note: Plasmapheresis refers to the combination of IVIG and the removal of antibodies via apheresis.  See the [[List_of_doctors_and_approaches#Plasma_exchange_/_apheresis|list of approaches page]] for more information on plasmapheresis.

== Support group ==

The [https://www.facebook.com/groups/653413942477238 ''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.