The more I do this biotoxin avoidance thing, the more I realize the name of this blog is fast becoming inappropriate.  It looks like I will almost certainly be pursuing extreme avoidance for several months before I consider ampligen.

Last week I did something I haven’t dreamed of doing in the last few years.  I drove 11 hours in 3 days in a trek to warmer pastures.  I drove 4.5 hours in day 1, 4.5 hours in day 2, and 2 hrs on day 3.  I haven’t driven 4 hours in 1 day in at least 4 years, but considering all the other improvements I’ve had from avoidance, I thought it was about time I pushed the envelope.

I did need sleeping pills on one night, but besides that I had virtually no PEM from the trip.  In fact, I felt so good driving through the Southwest that I literally felt high frequently while I was driving.

Here are some real-time notes I cobbled together from during the trip (featuring both good and bad):

“After drive and shower, in my trailer. Hard to read but vision is clear. HR racing a bit, calms down after 10 minutes. Able to read clearly again and breathing is full and steady.”

“still very sound sensitive.  not as light sensitive – can drive at night without lights bothering me too much.  still room to improve here.  can sleep without totally enveloped sleeping mask.  wearing bose noise cancelling headphones is a godsend for driving when the motor is revving hard to tow 1500lbs up a hill. ”

“acid reflux is much better in good environment.  was constant (where I was staying before”

“Las Vegas literally looked like a different place because i was taking it all in and everything looked crystal clear. ”

“less pain from sitting for extended time in car.  in the past my butt, legs, back in burning pain within 2 hours. ”

“stress response seems dented.  about 30 minutes of my 4 hr drive was in stop-and-go traffic.  those that tow know that is 2x more stressful because stopping distance must be increased.  it was not pleasant and did feel like a little too taxing on the adrenals, but it did not burn them out or cause PEM.”

After a few days of trying to find a good location in Southern California, I’ve settled down in Yucca Valley.  I am still incredibly reactive at this stage, because staying in a location that Lisa and some others thought was good was actually the worst I’d felt in quite some time.  I feel much better up here.  I’ve started taking CSM for the first time and after 5 days have already worked up to 1 tablespoon of 100% powder 3x/day without any signs of intolerance.  I have some brain inflammation and sinus congestion, and feelings of extra grogginess, but it’s peanuts compared to any other serious treatment I’ve ever tried.

I was feeling good enough today to try another “first”: hiking.  I must say that I felt the initial signs of PEM, and just tipped the scales enough to actually have it, but it literally stopped after 10 minutes or so.  Before I started avoidance, I’d never experienced signs of PEM that did not result in PEM for the rest of the day.

Because I did not experience the ability to hike miles in the desert like other ME/CFS patients, I’m wondering if taking antivirals to help with the virii in the heart may be a necessary thing for me.  Granted hiking without substantial PEM is, again, something I haven’t dreamed of doing for the last 4 years so surely there must be room to improve, with or without AVs.

Here’s a short list of symptoms that have without a doubt improved since I started avoidance:

  • muscle strength
  • acid indigestion
  • brain stamina
  • vision
  • light sensitivity
  • stress response
  • gut inflammation
  • sleep (don’t need benzos in moderately good location, don’t need antihistamines in good location)
  • can do yoga right before bedtime without disturbing sleep
  • OI (can stand for much longer in grocery stores, take hot shower without needing to sit down)
  • POTS (resting HR was 90s, now 70s)
  • PEM

About CityChanger

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

One response »

  1. Congratulations! I’m so glad to hear that you’re doing so well.

    While a few people with CFS can hike for miles in the desert immediately upon getting clear, others need to proceed more gradually to that point.

    Erik Johnson said that it took him several months to be able to work up to going on long hikes, for instance. He credits the detox he obtained through sweating with exercise as being responsible for at least part of that improvement, and never took any antivirals.

    I did benefit from antivirals (Valcyte and Famvir), but I think they were most helpful in improving my cognitive function and decreasing my reactivity. I was getting to the point where I could hike for pretty long distances in an excellent place even before I started taking those drugs.

    I spent most of my first two years of “extreme avoidance” in really excellent places. Feeling good became really addictive! It’s only now that my reactivity has gone down a lot that I’m able to do okay in places that are just moderately good.

    You will get there too, eventually.

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