I was permanently harmed by the protocol - specifically by the biofilm busters and NMN. The former seemed to unleash some infections (what I suspect is some spirochete) that it has been unable to rid itself of since; the latter made my PEM much worse, the level of activity that triggered it much lower, and time course much longer. It sent me back from moderate to bedbound. Other things like riboflavin gave me serious though reversible inflammation and bleeding, or thiamine that flared my candida and made me feel like my nervous system was exploding. The probiotics gave me dangerous (actual) herxheimer reactions even at tiny doses. The antimicrobials and immunomodifiers are obviously not fit for purpose. Both are weak - we should have already learned from both the HIV and COVID pandemics that people hawking herbals as antimicrobials are scammers (looking at the order of magnitude difference in IC50/EC50 between, e.g., herbals and pharmaceutical antivirals alone should be enough to clear that up), and the full extent and root causes of the immune dysfunction are not even fully or firmly understood. Not to mention immune profiles often differ widely between individuals with even just this disease, let alone all the diseases the protocol claims to treat. Taking immune modifiers willy-nilly, when I was early into this illness and desperate enough to dive into this protocol, is perhaps the most profoundly negative thing I did to entrench this disease state in my body.
The protocol - which is barely legible - is obviously psuedoscientofic nonsense that can’t even accomplish any of the wide range of lofty goals it promises. But this is also a population that in many cases is frighteningly sensitive to tiny doses of supplements that for anyone else - even other people with the illness - would be completely innocuous.
Needless to say, none of it is getting at sufficiently upstream causes of dysfunction, but merely tinkering with downstream dysfunction, much of which could be compensatory and protective. Claims that this is all “complex systems biology” that is meant to magically click together in the body, but not be understood by mere mortals, are a profound and disingenuous arrogance that prey on people’s overwhelm, desperation, and abandonment.
It’s dangerous and there is no one warning vulnerable and desperate people about the dangers. Every bad reaction is explained away as a “herx”, which is a very specific pathology and not some catch-all bad reaction that can be diagnosed via strangers on a discord server. (Not dissimilar to explaining away every bad supplement reaction as merely a result of MCAS). Not to mention the two high profile deaths (that we know of) associated with what is plainly a cult figure, who massively overplays his expertise, and his ever-shifting “protocol” (currently only $690 for a monthly kit, $800 if you want iron with it too!). Neither deaths were ever properly investigated or discussed in the context of this protocol and how it may have contributed. If this were to have occurred in the context of a real, regulated, well-run clinical trial, it would be considered profoundly unethical, disqualifying, and career-destroying, as it should be.
I very viscerally understand the desperation that drives people to view this protocol as a Hail Mary. But this is not a remotely serious way to treat any illness. And it concerns me that medical and research professionals might see the community engaging with this clear grift and conclude that the community - patients, researchers, and specialist clinicians - and much of the very valuable knowledge we have otherwise is pseudoscience and not worth engaging with. We need REAL research and REAL treatments, and we need a community focus on advocacy for funding well-run studies to get us there. What we don’t need are any more pseudoscience grifting cults where the deaths linked to the protocol - or perhaps more importantly, to the figure at the heart of it all - are downplayed and left completely unquestioned.
