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
- 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)