I was fortunate to receive high-dose IVIg in Germany (Pentaglobin), and within a week or so, had total remission for 2 months, including PENE (fluey post-exertional symptoms, inability to reproduce energy; etc), neurocognitive, cardiac (endothelial dysfunction & micovascular angina), orthostatic, pain, Raynaud's-like symptoms, sleep, etc.
I have also been fortunate to receive Deep Sequencing, so we now know I have a rare mitochondrial DNA deletion in "protein Complex V", also known as ATP Synthase. With this particular deletion, there is an "uncoupling" of oxidative phosphorylation, and the patient produces heat via a protein called Thermogenin, INSTEAD of the ATP they should. These worst mitochondrial symptoms, manifested in hot thighs after activity (all night - can't sleep most nights, even with ice packs on them), and pathological exhaustion, worse after activity, were also eliminated by Pentaglobin.
When I relapsed again in Canada, I was given high-dose Sandoglobulin according to Dr Jonathan Kerr's research on persistent Parvovirus B19 in "ME/CFS" (UK formulation, on trial in Canada at the time), and had the same total response, albeit for just a couple of weeks. I received 2 or 3 high-dose series, with the same response each time. A measure of how much it helped; I also had significant side-effects (horrendous headaches and high fever and paroxysmal coughing - reactive airways) in reaction to Sandoglobulin for the first few days, but I would do it again if I could get it, because of the relief of the M.E. symptoms.
If you look up key words, "IVIg, Jonathan Kerr, Parvovirus B19, Chronic Fatigue Syndrome", you can see his article on this, and most importantly the cytokines he tracked, along with PVB19 titers and clinical response. As I recall, his PVB19 patients were relatively new (within 3 or 4 years), but I still responded dramatically, and this was at about year 10. I asked for, but did not receive cytokine tracking.
I still receive IVIg, and while subsequent formulations significantly help, they have not had the same spectacular impact that Pentaglobin did. IMHO all IVIg formulations are not created equally. My cardiologist in Germany at the time provided this article which suggests that Pentaglobin has a unique anti-inflammatory effect due to its formulation. Pretty credible source: Science magazine. Here is an excerpt:
"Recent studies have demonstrated that the anti-inflammatory activity of IgG is completely dependent on sialylation of the N-linked glycan of the IgG Fc fragment. Here we determine the precise glycan requirements for this anti-inflammatory activity, allowing us to engineer an appropriate IgG1 Fc fragment, and thus generate a fully recombinant, sialylated IgG1 Fc with greatly enhanced potency."
The link:
https://www.sciencemag.org/content/320/5874/373.short?related-urls=yes&legid=sci;320/5874/373
Would post more, but am simply not up to it. If you look up some of my much older posts, you might get more granularity.
