Over the last 3 nights I’ve been waking up every few hours.  Not totally wired, heart’s not racing, but waking up nonetheless.  Thought it was just some exposed fabric, so switched out all my bedding and all my clothes: same results.  Because I was able to sleep so soundly without benzos, I’m not going back on them.  That just doesn’t make sense to me.  Even without getting solid sleep, I’m still functioning better than I was before I moved to the trailer.  That’s the upshot.  The downside is I’m not feeling so good about the plan I laid out in my previous blog: to just do avoidance until I “max out” with it.  Whenever I’ve come to a fork in the road in the last few months, ampligen always seems like the easiest thing to do.  Which makes me wonder how much of my decision to pursue avoidance is me being as much of a mule as they come.  I keep telling myself: mold avoidance is the way to preserve the benefits that ampligen would give me and prevent the almost sure relapse that patients suffer once stopping it; ampligen doesn’t get rid of toxins! etc.  But how much of it is wanting to go off the beaten path and beefing up the underdogs’ theory (or at least help show that their theory is worth exploring)?  And how much of it is purely for my own physical good?

In any case, when I calmly count the good and baaad sheep, there’s clearly more good than bad still.  My lack of sleep is the only snag.  Again, I’m still functioning pretty well.  The odd thing is this: after not sleeping well, I’m pretty crappy in the morning.  So I follow my intuition, come home and take a shower (or decontaminate, as the mold warriors might call it) and then all of a sudden I feel golden for the rest of the night.  I can work, do whatever.  It’s 12 degrees outside (yeah no lie) and the fact that I’m still feeling pretty good is another testament to the benefits of avoidance.  I haven’t gotten sick (knock on wood), even when I’ve felt like I was coming down with something, so I think overall the immune system is just more balanced between th1/th2.  Moreover, my adrenal response has seemed to begin shifting.  Yesterday, after said crap night of sleep, I drove 40 minutes in the morning to go to Walgreens, Target, and the University hospital.  I drove to go get food and drove 30 minutes back.  I was not able to do much work for the rest of the day, but my adrenals didn’t completely burn out.  You know, that feeling where you’re just dead in the water, completely decomissioned, need to lie down, cursing your own existence.  Yeah, didn’t happen.

So it seems now that the inflammation is dampened, the adrenals also have less reactivity to have to dampen down.  My cortisol curve is probably still flat as a 12-year old boy, but clinically speaking, this is undeniably a good sign.

I’m still leaning toward doing extreme avoidance and detoxing, but more torn than ever.  I guess the fact that if the circuit breaker popped I’d probably turn into the Ice Man (please let me resurrect as Brendan Frasier), makes it more sensible for me to head for warmer pastures.  I’ve been saying up until now that the outside air is not a huge factor for me, but that must be short-sightedness speaking.  All the mold warriors are keen about the outside air being a huge factor, so changes in the outside air being the offending agent behind my shoddy sleep is certainly worth looking into.  I replaced all my bedding and swapped out a new pair of clothes, and that didn’t change my sleep a lick.  Has to be the outside air right? By elimination?

If it is the outside air, then besides the great possibility of “ick” during the winter, could it be due to higher air pressure (again, 12 thank-god-for-12, degrees) and lower oxygen content?  I wouldn’t think the lower humidity is hurting since avoiders do plenty well in the godforsaken desert.  If so I’m wondering if it’s  high time to break out my portable oxygen concentrator and get on the Deckoff-Jones oxygen bandwagon.   Some patients have been telling me they swear by it, especially for sleep as Dr. DJ says.

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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).

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