Last week, I completely weaned off my sleep medications again. Benzos, no less. People have told me in the past how dangerous it is to wean off benzos so fast, especially after I had to take them daily for 1 year to get any sleep. But when I listen to my body, it’s dead tired every night so I decided to follow its cues. Without the benzos, my sleep quality has been better, no doubt.
One of the most noticeable changes for me now is day-to-day predictability. Whereas in the past, after pushing a little too much with work or errands, I’d have a bad night of sleep and wake up before my magic number of hours totally wired and then be straight decommissioned for the rest of the day, now after overexertion I get however much sleep I need, and the next day I can still function.
Because of this day-to-day stability, I am able to work on an entrepreneurial project with a team of healthy cofounders that hold me accountable for a certain quality of work day in, day out. I can’t hold a traditional 40-hr workweek, but I can probably do 40 hrs total of work a week. I have to stay seated the whole day, take a ton of breaks, and my brain hits the wall after 2-3 hours. But I can probably do 2 hours of top notch work followed by enough function for about 4 hours of mind-numbing tasks. The best part is I pretty much know if I avoid biotoxin exposures, I can do the exact same thing tomorrow and the next day.
This change alone has made me scared about starting ampligen, ironically. I’m confident that ampligen would only improve my capacity to do work over time, but I’m worried about the side effects on the way there and whether they would jeopardize my project.
On the other hand, I’m fairly confident based on mold warriors’ experiences with antivirals like famvir and valcyte, that if I can lower my reactivity with avoidance and detoxification (with CSM) then ampligen will surely be a much smoother ride. So that’s my goal. I’ve yet to figure out if staying in my current location will be the best way to get there, especially with winter setting in, but so far I’ve noticed that I don’t seem as reactive to outside air as I do to exposed fabrics, especially bedding. When my pillow is exposed to the wrong toxins, that can singlehandedly ruin all the benefits I described above, and I wake up throughout the night with my heart racing. The changes in outside air do not tend to disturb my sleep, and I’ve been through changes from the sunniest of days to the most depressing of days with very low barometric pressure.
I may take a vacation further south in the coming months just to compare how I feel. If I feel drastically better there I’ll probably do avoidance there, and if it’s par for the course I’ll probably go back up north just because the medical resources are fairly robust where I am right now.
It’s weird to be taking treatment decisions so deliberately. Certainly it’s a departure from my ways in the past, but desperation sows impulsiveness, and I was in a state of desperation for 4 years before finding the only thing that’s really worked — avoidance.
My other caveat is that based on the discussions I’m following from long-term avoiders, avoidance in and of itself should not be the end goal unless you’re ok with avoiding civilization and being OCD forever. For me, I want this to be the means not the end. I hear of long-term avoiders that are able to drive a lot more, function, even work (hey that sounds like me!) but once they get hit, they’re back to baseline. They get the MCS back that’s been gone for months. That scares me to no end. What’s the point of all this hard work if you can fall back to baseline with one big hit? But I look at people like Erik and Lisa whom have done hardcore detoxification, and their experiences are nothing like this. Sure they still need to avoid the particularly noxious stuff, but it doesn’t take much decontamination and/or time to get back up the power curve. I haven’t heard of their current exposures re-triggering MCS, for example. Lisa could even go to Chicago and do fairly well there outside of the winter.
However, I can’t deny that the fact that they’re still reactive at all after years and years of avoidance and detox and bug-killing and restorative work (huge doses of probiotics, among other things), that they’re still reactive to stuff healthy people are not, at least not in the same way. It’s pretty depressing that regardless of how much I avoid and detox and kill and for how long, I probably won’t get better than where they are. (Well they haven’t taken antiretrovirals so that may be an exception but we’ll skip that topic for now) Obviously there’s a deep-seated change at the cellular level, whether it be loss of detoxification abilities, permanent disruption of hormones that shut down the reactivity response, etc. I fear it’s not something we can fix on our own with anything we can do with effort or buy over the counter. What type of role ampligen plays in this will be interesting: I’ve heard from 2 ampligen patients that their severe MCS improved dramatically. Certainly it’s suppressing the reactivity response. Based on Dan Peterson’s patients’ responses, it seems to be shutting down reactivity to even the Voldemorts of biotoxins in Incline Village.
Is the solution some combination of oral ampligen and avoidance? I just hope we get the chance to test that out. GcMaf + avoidance is no longer as appealing on a theoretical level because maf seems to be exacerbating the problem we’re trying to solve. For it to work for the purposes of this discussion, the reactivity would have to be caused by a bug that isn’t touched by the antivirals currently taken by ME/CFS patients. If the bug maf is killing is just a bystander and not the cause of the mechanism of reactivity, then I don’t see how that would make things better. It’s been several months and maybe 100+ patients on maf of various forms, and so far I haven’t seen examples of reactive people getting increasingly reactive (from maf increasing inflammation) and then getting much better after that. Instead, I’ve heard of people that were not very reactive to begin with getting a lot better from maf, which wouldn’t be all that applicable to the rest of us.