This is the probably the 20th time I’ve set out to write this blog, and with some peer pressure I’m finally getting to it.   I would rationalize this as a good sign that I’m getting busier, but it’s probably just laziness!  Don’t think avoidance cures that unfortunately.

Holy crap it’s been 4 months since my last update.  The plus side of my laziness is that this update will actually be worth something in noteworthy changes since the last one.

Physically, I’m noticing continual improvement.  Although back in January I could push myself to get to 4 miles on flats, for the last 30 minutes I was literally dragging myself through the desert like a scene of  The Ten Commandments.  I could feel my feet pool in typical OI fashion and my feet actually hurt from swelling.  Although I didn’t get PEM I was definitely very fatigued and actually wanted to sleep or rest for the rest of the day.

Now I could do 5 miles on flats with relative ease, with far less pooling in my feet.  So there is definite improvement with OI, while walking at least.  My muscles also still feel spry at the end of 5 mile, and after the hike I can actually do normal activity for the rest of the day, so there’s the endurance.

Back in January I was probably capped at 3 miles while climbing.   Over the past few months, I’ve done a 1000 ft climb several times from about 4500 to 5500 ft and whereas the first one nearly keeled me over, the last one I did a few weeks ago didn’t feel like much of a challenge.  Yesterday I did a 5 mile route with at least 50% of it being climbing.

Standing still continues to bring out the worse in my OI, but even then it’s light years better than it was before starting this exercise.

Resistance training came along faster than the aerobic.  Thus, there’s not as big of a change since January, but it seems that in the last few months something clicked anaerobically as well.  Although I could lift weights just fine in January, my muscles still felt detached in a sense, and deceptively weaker than the amount I could lift.  Driving would tire out my left arm, and lifting my arms straight up while lying in bed tired them out rapidly as well.  Even holding them up on the table to type on my laptop wouldn’t last long.  All of those symptoms are gone: it feels like my muscles are constantly “there” for me now.
I’m also operating better on little sleep.  Before avoidance, if I slept less than 9 hours, don’t talk to me until I finally get 9 hours: that was a rule.  I was cranky as all hell and just felt poisoned the whole day.  For the past 2 nights, I’ve slept 7 and 8: great hours for a normal person which felt like a pipe dream to operate on for me.  Yesterday I drove 2 hours to hang out with my mom for 6 hours, and today, I feel totally fine. It seems that the issue is detox.  I’m sticking with my theory that something very important happens detox-wise in the last few hours of sleep, and if I don’t get those hours, I better find another way to detox if I want to make it through the day in good shape.  CSM has been somewhat good for that, but exercise seems to be more consistently helpful.  I’ve gone on hikes where at the beginning I feel like I’m dragging my feet and can barely make it another 10 minutes without something breaking down, and then find myself feeling great 20 minutes later and hiking for 1.5 more hours.  Amazing.

So all in all, very tangible improvement.  My body is obviously reconditioning at this stage, and I’m taking a great 22g plant protein powder along with creatine to help it do so.

Now the not so good news: my brain doesn’t feel improved at all.  I feel like I have more brain stamina, but cognition (ability to read, comprehend, hold dialogue) really haven’t budged.  This despite being on 1350mg of Valcyte, which I was hoping would help at least with this.  I’m not complaining because even if I’m operating at partial capacity, at least I’m able to maintain work long enough to accomplish tasks I need to accomplish.  That alone is, well, a big accomplishment.

My reactivity is still very high.  I’ve had fitful nights of sleep depending on what pieces of clothing are hanging in my trailer.  Hopefully this will come down during the 6mo-12mo mark.  Fortunately, I think I’ll be able to stick it out in pristine locations for now to keep the detox going at a good rate.

Misconceptions: I thought that my temperature sensitivity would go away on avoidance.  It’s improved to where I can  hike 2 hours in 85-degree weather, but I can’t sleep well in this weather at all (hence the 7 and 8 hours I mentioned).  My trailer is made of aluminum so it conducts heat (and cold) really well.  I do fine with a space heater in the cold, but the heat is overbearing.  I was hoping I could stay in super-hot weather to further promote detoxification, but I don’t see that happening anymore.  Perhaps a sauna is the next best thing.

So all in all, things are more or less on projected trajectory.  If my brain ever comes around, I’ll be jumping up and down and hugging locals that keep wondering why this bum in tanktops and shorts never leaves Starbucks, but really even if this is the finale of my improvements, I wouldn’t complain one bit.

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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