I’m sorry it’s taken me so long to update!  Much has been in flux since then, so I didn’t want to string anyone along for my indecisiveness.  However, the layoff has also been a good thing, because the importance of avoiding biotoxins has become clearer than ever to me.

For starters, the house that I thought was good still ended up being OK all this time, but I didn’t set out on this journey to get to “OK.”  It was clear that my body was reacting to stuff in there: every time I stood up I got vertigo, and I had a constant headache in that house.  Some may say those are just ME/CFS symptoms, and not too long ago I would’ve agreed with that.  In fact, when I was living in a house in Los Angeles that was way beyond the danger zone on the ERMI test, I felt like that (and worse) every day.  I thought it was “just CFS” too.  I couldn’t even use the computer for more than a few hours a day before I totally crashed.

Granted this house was much better than that.  I was able to function pretty well there, especially when it came to using my computer which is my lifeline (I don’t have TV).  Yet, I knew that I wasn’t going to do ampligen in that house, because that would be settling when I’ve experienced the other side. However, with the snow pouring on, I wasn’t ready to move back into an aluminum cold-conducting refrigerator on wheels.  So I found a place in the hills to try out.  Now I remembered what my moldy house felt like.  The irony is that you feel so full of CFS symptoms with that level of exposure that it makes it difficult to leave.  It lulls you into a false sense of rationalized comfort, not to say anything about having the siren of a TV again.  Man I forgot mind-numbingly delightful a free Harry Potter marathon could be 🙂

But I bucked up and asked the landlord if I could move my trailer into her backyard and stay there.  Shockingly she said yes.  My first night there, I crashed like a baby.  It felt like my body finally wanted to sleep for the first time in months.  Within a few hours, my brain & vision had come back online.  2 days later, the unbelievable happened.  I drove a ways to do 5 loads of laundry (carrying them all in trash bags), went grocery shopping, drove back, hung dry all 5 loads in 30-something degree weather, went back into my trailer and waited for the crash.  And waited.  Then I found myself stop waiting, and went to work on my computer.  Sure I was winded, but the burning PEM (and by burning I mean hot sensation all over combined with cold sweats and flu-like malaise) never came.  My heart took a bit of a beating, but stopping inflammation in its tracks does not fix your deficient organs.  I’ve learned that much.  However, I think that is half the battle, as Rituximab and Ampligen trials may have shown.

Of course, every time this happens, I pay for it dearly the next day.  Well, the unbelievable happened again: I drove 30-something miles downtown, went grocery shopping at not one but 2 stores, then went to a coffee shop and worked for a few hours.  Drove back, and stayed on my computer for much of the night.

No way?

And today, I drove the same distance back and forth.  I won’t lie: there was some profound fatigue today, but here I am blogging after a few hours of work so the PEM still hasn’t hit.  That’s 3 days of pretty substantial activity for me without PEM.

So with this experience, I’ve decided that biotoxin avoidance is a bigger part of the picture for me than I ever imagined.  I never experienced lessening of OI and PEM in my past attempts at avoidance.  These were core symptoms that I attributed to virii, and they still might be, but I now have my first experience of a subtle shift in those core symptoms due to only avoidance and no bug killing.  I’ve decided to get clear in any way I can, perhaps moving down to warmer pastures near the water for a few months, and taking CSM to detoxify and lower my reactivity.  Only then should I start ampligen.  That isn’t to say I don’t think Ampligen would make this whole journey much easier: the experiences of Peterson’s patients in Incline Village implies that Ampligen might very well make patients stop reacting to this stuff.  However, my going hypothesis is that by lowering reactivity first, ampligen will work much faster and without being as bumpy of a ride.  I’m only trying to get a certain point of function with Ampligen, because I don’t believe it’s a lasting cure.  Even if I could afford to take ampligen every year (which I can’t) I don’t want to because no matter what the safety profile is, it’s still a synthetic drug and I don’t want ongoing exposure to it.  Once I get to a good enough level of function (enough to work full-time from my computer), I would likely return to extreme avoidance and take a cheaper bug killer such as gcmaf on an ongoing basis.

That’s the master plan anyway.

About CityChanger

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

2 responses »

  1. Tyler Balombini-Goddard says:

    First off thanks for continuing with your blog. I have what seems like a more moderate case of cfs/me although it debilitates me to no end and i am considering mold avoidance at some point plus of course gcmaf or retuximab down the road. I am glad to hear you are doing a bit better. I was wondering if there r many people who have tried the mold avoidance and experienced no improvement. I cant say for sure of course but i dont think my current house has mold issues. I live in Maine where the air is cleaner than say LA but of course it is said that pollution from the midwest can be carried over here via the jet stream. Also what is cms?

  2. CityChanger says:

    Hey Tyler,

    From what I’ve heard, most (if not all) that have tried extreme mold avoidance have experienced substantial improvement. I am no longer surprised by this. Based on my initial experiences with mold avoidance, I thought this wasn’t going to help me substantially and was convinced that my viral load was the reason why. It turns out it just took a little longer for the effects to sink in.

    From what I understand, it’s not about conventional air quality indices but rather the presence of particularly noxious plumes of unidentified stuff. You can take a look at http://locationseffect.proboards.com/ to see what others have had to say about Maine. I’ve heard that typically the east coast is more troublesome.

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