Immunomodulating agents like liposomal Vitamin C and prebiotics are among the most potent of the known biological response modifiers. They amplify our NK, macrophage, T-cell responses, etc.
Unfortunately for those of us with disproportionate pathogenic loads and limited bioenergetic/anti-inflammatory capabilities these effects are particularly damaging because of the ROS this creates. [...] I do think you need to ask yourself, what do you stand to gain from this approach? There has to be a cost benefit analysis, and I think everyone needs a plan before embarking on a trial of prebiotics/probiotics. I will also caution that there may not be an easy exit strategy once one begins the process of re-establishing immunocompetency.
I had an acute, post-viral onset to my ME nearly 30 years ago and was confined to bed for many years. After a while, I gradually went into enough of a remission to be able to live independently and work full-time before I relapsed several years ago. My process of remission from my first illness was smooth, however: I didn't get periodic worsening of symptoms, but just gradually got better on my own. It's odd that now, when I'm housebound rather than bedbound and able to live independently, I should get slammed when taking something as innocuous (?) as Vitamin C. During my first illness I was on 45g (yes, grammes) a day without any effect, good or bad.
I'm curious to know whether other PWME who are trying pre/probiotics have been having new symptoms appear, or a worsening of existing symptoms apart from GI symptoms (which might be expected to go haywire while a new ecosystem balance is being established in the gut).
We are also witnessing some very distressing symptoms paired with some impressive gains. This has been the pattern I have become familiar with, and it is my hope that eventually we can develop more ways to mitigate the adverse symptoms. I think until this happens, the most influential control point seems to be the quantity/type of prebiotic, so this should be used with great caution. I can tell you that on Sunday I felt better than I have felt in 5 years, but this has since been accompanied by a number of challenging days as I experiment with new prebiotics.
I look forward to when we have genera and species level intestinal microbiomic data from a large ME/CFS sample. I truly believe we need this more detailed taxonomic data. [...] I welcome people to post intestinal microbiomic data.