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.

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About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

3 responses »

  1. Lisa Petrison says:

    This is a very good post, perceptively analyzing the trade-offs that “extreme avoidance” involves.

    However, from the few dozen case studies of ME/CFS patients who have pursued mold avoidance that I’ve seen over the past year, it doesn’t necessarily have to be “extreme” or nothing. We now have seen lots of people make gradual — but marked — improvements living in regular homes in civilization.

    I’ve told this story before, but typical is one Peterson patient who had tried a variety of heavy-duty treatments such as Vistide. This individual moved from a moldy home to a better one, got rid of a lot of possessions, washed the rest — and obtained a 20% improvement within a few months, with continued gains after that. Last I heard, this individual was looking at further ways to decrease exposures.

    Finding a home that’s safe is a challenge. Giving up possessions because they’re contaminated is a challenge. Not being able to live in certain locations (I generally list the Bay Area as a place where people really can’t make progress) is a challenge.

    For people who are really sick, any sort of mold avoidance requires at least a bit of money and at least a bit of help. But that’s true of almost all CFS treatments.

    And regardless, from what I’m seeing, achieving gains doesn’t necessarily mean “going extreme.”

    Though it certainly is interesting to see you doing it!

    Best,

    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  2. Flo Henson says:

    I really like your approach, and I look forward to following you on your journey.

    • CityChanger says:

      Thanks for the kind word Flo and Lisa.

      One of the dilemmas I have about the extreme versus moderate avoidance question is that although extreme avoidance is more remote and can be more of a sacrifice, moderate avoidance can often be more of a gamble.

      For example, Lisa you mentioned living in a trailer. First off, although that may resolve “sick building syndrome” it also requires getting rid of everything and starting anew, just like extreme avoidance. That’s a big enough deterrent for the vast majority of patients. Then there’s the question of staying in a big city. For those that are just starting out and can’t tell ick from mold from chemicals (me!), it’s nearly impossible to know what to avoid in the city if you don’t know what your body’s response actually means. And that’s if you are actually able to identify the response, something I am JUST now beginning to do.

      Some people are able to stay in an apartment, but if you’re an extreme reactor like me, that requires some real discretion, patience, and most of all–major luck, in finding a place. The skill part, ironically, probably requires extreme avoidance as an exercise in order to pick it up, and starting extreme avoidance might mean that buildings that used to feel fine now set your body’s alarm system off (again, this has happened to me too). It can become a catch-22 for a long period of time, before your reactivity comes down.

      So in order to prevent having to move from one apartment to another like a chicken with its head cut off, moderate avoidance seems to make the most sense as a step 2 after the first step of extreme avoidance with an indeterminate time table: as long as it takes for your reactivity to come down and your perception to go up.

      However, I think many patients would do well moving to a chemical-free, mold-resistant trailer. That level of moderate avoidance, if within financial means, is a step I would recommend to most people as long as they are willing to a big city that has moderately good air.

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