A couple of notes on my personal experiences with treatment-induced neuropathic flares (the following relates to using singularly strong agents like disulfiram, MCAS, immune system storms):
Before I belonged or knew of this group (disulfiram group), I went into disulfiram treatment blind (albeit with healthcare practitioner guidance). Went straight to 500mg dosing (because I had extremely little suspicion or expectation of potency). Took it 3 days. Initially things were fine, the usual flare response was strong, but all of a sudden a switch seemed to be pulled that leveled up what I call a nuclear level flare (which at this point, with much stronger baseline achieved via previous treatments, I thought was impossible). My nervous system got lit up. Exact patterning as when I engendered nuclear neuropathic flare storms with other aggressive treatment regimens in past (which I've experienced about
3-4 times, usually with aggressive combos of antiparasitics and intracellular, but has to be combo, never had induced those flare storms with agents used singularly on their own. But should be noted I have a historical pattern of "big herxing"). So as in those previous treatment induced neuropathic storms, with disulfiram induced neuropathic storm my nerves were absolutely and phenomenally on fire, occipital neuralgia was constant and crippling, gripping like a highly-heated grappling hook. Mind you, I hadn't had neuropathy in a good long time prior.
I was hoping the neuropathy would downcycle on its own (after discontinuing DSF), but after 3-4 weeks was still in absolute agony, and could tell it would take too long. This was when I recalled my previous similar type treatment responses in past (the most recent having taken place some years back). And when this firestorm is raging, I can't even tolerate the reintroduction of 1 drop of a previously well-tolerated low level antimicrobial. My view is any kill agent now used at this point is like throwing matches on top of the fire and upregulating the firestorm loops, so the most important thing is to stop the kill agents and focus on dousing the fire. Only redose kill agents when firestorm has been extinguished or you will possibly keep potentiating the phenomenon to some degree rather indefinitely in my experience. So I asked doc for gabapentin (as I remembered those previous episodes I recalled that gabapentin had worked quickly and effectively), and boom, a proper dosing on that was like a fire extinguisher. Straight to baseline in about
a week.
Second go around with DSF I was much more careful. I understood potency of this agent, so I was leery, but also very excited because at this point there aren't a lot of effective agents for me with this obstinate remaining pathogen load, and that level of response suggested incredible potential effectiveness. Started 62.5mg 1-2x week. Even with that flare was booming (but no neuropathy), further leading me to suspect this treatment would be incredibly hard for me to handle without help, I asked for multiple antihistamine protocol to see if we could short circuit what I presumed was immune system cascades that were amplifying the flare response (I have a whole hypothesis surrounding MCAS dynamic potentially playing significant role in the herxheimer phenomena, most especially in what I'd call the "big herxers" and those with severe physical exertion malaise, amongst other things).
Anyhow, this made a WORLD of difference. Overnight the flare response was downshifted significantly, and from there it was a pretty straight shot to 500mg dosing. Don't get me wrong, there was strong flaring, but it was buffered, and I had no further issues with neuropathy even at those higher doses (which makes me wonder how much the immune system cascades are involved with driving and amplifying these symptoms).
Which gets into thinking on possible dynamics in these scenarios.
I recall a doctor I really respect has a hypothesis around the quinolones, which in fact was a question I'd long wondered about
myself because it dovetails into these questions on herxheimer phenomena, neuropathy, immune system storms, MCAS. His thought was that maybe when you use a powerful agent like the quinolones (some of which are documented to have antiprotozoal activity), an agent that is potent and really gets into the nervous system, CNS, that the use of this agent at full dosing ends up hitting what may be a significant load of dormant pathogen in those tissues (and for many people these are occult, undx'd infections). The response is not always immediate, but there is a very key point where things go nuclear (is this a point where infections have finally been so provoked they trigger the firestorm in the immune system, which is what may in fact be running roughshod and causing the incendiary damage/inflammation?). It's akin to hitting a hornet's nest with a bat, or tossing a lit match onto a gasoline-drenched field.
So you awaken the slumbering or quiescent infections, "whoooosh," they roar to life, and/or consequently the immune system goes bonkers driving a hyperresponse in these tissues, driving inflammation, pain, potentially damage (a guess being this phenomenon is likelier in individuals with the specific immune system genetics - those prone to MCAS phenomena). And when something at grander scale, say the "floxxing" phenomenon takes hold, could it be that the agents have engendered a high level, cascading immune system response that loops on and on? and in some cases can cause severe damage? I wouldn't doubt the quinolones could cause damage on their own, but one wonders if similar type response patterning may occur with other very potent antimicrobial agents (like disulfiram)? the question basically being, does the agent cause direct damage, or is it triggering a secondary response via the infections (and subsequent immune system cascade)?
It's very hard to use low pulse dosing hedge with the quinolones given the resistance issues. But it appears this is a difference with disulfiram given what we are seeing anecdotally as it seems it might have fewer resistance issues even at lower dosing (time will tell on this). Personally, I like playing the hedge, dose slowly, especially if you are historically a "big herxer," and consider looking into trialing combo antihistamine iterations if you believe these dynamics may be plausible, in the hope of short-circuiting these amplified immune system responses.
Personally I've had to do a lot of trial and error when it comes to this stuff. Backwards engineer, tease out info and possible plausible mechanics based on my responses, often having to deduce backwards. Being a desperate case with low quality of life, I was not going to wait around for medicine and research to corroborate my experiences. If I'm feeling generous I'd say likely take them 1 generation+ to figure out there is a problem and 2 generations to untangle the herxheimer phenomena (one variable being well-funded private foundations which might accelerate the research dynamics).
And tangentially speaking, my intuition is that some type of MCAS related-phenomenon is at the base of the pyramid in a lot of these toxin type illnesses, the linking amplifying factor, especially as regards the severe problematic cases. But I'd guess toxins (what I'd call a type of necessary kindling for the conditions to be able to ignite in the first place), toxin producing agent, or some type of causative mechanism of the ilk, is probably often at root in this and maybe even factoring in quite a few of the other so-called idiopathic syndromes (where one sees the concept of causative mechanism often being overlooked by supposedly clever people)
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc96436Post Edited (sebreg) : 9/18/2019 9:08:14 AM (GMT-6)