I know most of my posts so far are indulging in the location effect / biotoxin sensitivity, but that’s because I haven’t started amp and I’m looking for a place to stay for the winter that doesn’t make my body act out. I hope those of you with no interest in all this will stay tuned for the more ampligen-heavy posts to come later on.
I was just told that HEB wants to test me for XMRV. I already have a positive culture and positive serology (antibodies) from VIPdx. This testing will be done free of charge, and they will do follow-ups periodically throughout amp. Sounds good to me.
The Inception of Perception: I should explain what “perceptifying” in this context means. This doesn’t have to do with mold sniffing, per say. This has to do with the idea that once I got to a “good” place, or a place free of noxious biotoxins, my body’s reactitivity to toxins would momentarily go up, so much that I couldn’t return to places that were habitable before. I was warned about this “point of no return” phenomenon, but of course I didn’t have any of this theory in the beginning, just as I didn’t believe in anything else about the mold avoidance mumbo jumbo.
So as I mentioned in my previous post, I’ve been searching for a good house for a month straight now, and I’ve been in innumerable homes. At the beginning, I still had a strong anxiety about signing a lease for 6 months and finding out it was bad after my first night there. Now I know within 2 minutes whether or not it’ll work, because in 9 out of 10 homes I step into, I can’t take a full breath, my vision is blurry, I can’t think straight, I can’t even read my iphone coherently. When these “symptoms” hit and I still proceeded to test the homes out, I’ve experienced severely-disrupted and less-refreshing-than-the-usual-unrefreshing sleep. So have I developed canine “sniffing” skills, or has my body actually become more reactive now that I live in a trailer? In other words, have I always been like this in these environments and just not realized it because I lived there all the time or is my body now spoiled by living in a metal box that it “acts out” when it’s not in one?
I’ve been told by extreme mold avoiders that the reactivity does go down eventually after several months. I look forward to seeing this happen, because not being able to sleep in 9 out of 10 buildings makes me wanna slap my hypothalamus into submission.
In the meantime, I’m wondering whether to wait until I find the “it” place before I start amp. I want to optimize the drug, and my hypothesis is that being in a place where my body feels good is the straightest line to achieving this. I do have some friends building a house out in the middle of nowhere within a few months, and they’ve given me permission to camp out there rent-free (which would allow me to afford a driver for amp infusions), so worst case scenario I push back amp by a few months. I’ve been sick for this long already; a few more months shouldn’t hurt.
Lastly, the odd phenomenon of trying something (mold avoidance) that’s supposed to make you feel better but might make previous residences, including homes you’re emotionally drawn to and / or might get into huge fights with family about not being able to enter anymore, inhabitable, begs the question of whether mold avoidance is something most patients should do. This is just another difficulty on top of having to adjust to camping or trailer life (hardly an easy task, and I’ll admit, even for someone that used to camp all the time required a ton of pushing and crashing before I got used to it). And I haven’t even begun to mention the real possibility of meeting the grim reaper in the middle of nowhere when traveling alone.
Add all that up, and mold avoidance is not something I would suggest to most patients. It takes up precious financial, mental, emotional, physical resource. The emotional part might be the toughest–for those of us that are still young of age and have lived in big cities all our lives, it can be downright heartbreaking to admit to oneself that you might have to live in the middle of nowhere for an extended period of time or even forever in order to not feel like crap. The social stigma of living in a trailer and being a fish out of water in trailer parks are perhaps the least of my concerns, and that’s saying something for someone that used to be a yuppie from head to toe.
However, those of us that are on this path can help others that are committed to do it, and we can perhaps learn a thing or two about what’s going on with us if, by combining avoidance with a drug like ampligen, I respond better (or worse) than those that do ampligen alone. I can’t imagine a life of avoidance, mostly because I know I don’t belong out there. I’ve always been a city-dweller and my soul crumbles when I spend more than few days out in the middle of nowhere, but the hope with combining this with ampligen is that I won’t need to do this forever, that this perseverance is a means to an end when I can enjoy life again, the only way I know how.