One thing that has bothered me for years is why I need 9 hours of sleep per night.  Why is it, that if I get 8, I’m pretty much non-functional mush for the rest of the day?  Other ME/CFS patients have mentioned they have a “magic number” of hours of sleep they need, whereas others are more fortunate.

I didn’t sleep well last night and woke up feeling pretty malaised.  Not “terrible” like I felt after 8 hrs of sleep in the past, but compared to when I sleep 9 hours here,  I feel more irritable, toxic, and the ME/CFS haze hit my brain & eyes with a vengeance.  I don’t know what came over me to decide exercising on this day would be a good idea, but it probably had something to do with feeling better after hiking the last few times I did.  Still, I haven’t hiked on a day when I started the day feeling very much like my ME/CFS ghost of christmas past.

The beginning of the hike was pretty unpleasant, but 20 minutes in, my eyes suddenly cleared up and I started taking in my surroundings again with clarity.  In doubt, I waited to celebrate.  After another 10 minutes or so, I found my energy picking up and feeling, for lack of a better descrption, “good” again.  Against all ME/CFS logic, I ended up hiking an hour today at a very brisk pace.  I even dialed my parents while I was hiking, and let’s just say talking while walking was nothing more than a pipe dream for the past 6 years if my adrenals had anything to say about that.

When I realized the haze wasn’t coming back, I thought with a good degree of certainty that what all the naturopathic doctors were saying about my sleep was true: that something important happens during the 8th hour which detoxifies my body.  Perhaps triggering the liver to release glutathione.  In the past, the only thing that helped with “8-hour malaise” in the past was coffee enemas, but even that only helped a minority of the time.  Taking binders of all types never helped.

This brings me to something Lisa and Erik have been saying for awhile: the body doesn’t seem to detoxify when it’s a bad place.  That’s probably why no matter what external measures I took, I could rarely resolve the 8-hour malaise.  I could empty out the sigmoid colon and gallbladder via coffee enemas, but systemic detoxification never happened.

Erik never took any CSM when he was working up the ability to hike for miles during the 6 month period in the desert.  Instead, he forced himself to exercise whenever possible.  Lisa didn’t really follow suit and wasn’t disciplined about hiking, but was disciplined about the CSM.  I wonder how I would fare over time combining the two, which I’ve been doing.  I never really had any inclination how good of a detoxification mechanism exercise was; certainly it’s great for healthy people, but I never thought it’d work for ME/CFS patients.  Therefore, I assumed Erik’s experience had to be a fluke.  After today, I’m almost positive it’s not, and that if I’m able to exercise without PEM, that’s one of the best things I can do to detoxify.

Another hint that hiking is a great detoxification mechanism is my sharp chest pains, which were exacerbated when I first started hiking last week, seem to be ebbing ever so slightly.  Lisa’s theory from the get-go was that I had toxins in my heart, whereas  always thought it was virii.  Perhaps it’s both, but exercise seems to be helping my chest pain (again, against all ME/CFS logic), and it’s hard to think that would be the case if it were caused by a bug.

One thing I’ve always had a hard time believing is that being a testosterone driven guy would be an asset on my journey to wellness.  As a ME/CFS patient, any drive just led to crashes.  I was forced, like all real ME/CFS patients, to set an energy envelope and adhere to it religiously if I wanted to avoid the slippery slope tomorrow.  Right now is really the first time in years I feel like the combination of my annoyingly high motivation and high testosterone (according to labcorp) are beneficial.  I’ve not gone hiking 1 out of the last 7 days.  My pre-ME/CFS gym rat mentality is coming back in full force and as it turns out, it may actually accelerate my recovery.

I’ve rarely had events in my life when something happens that makes you throw out everything you’ve learned about ____ (in this case ME/CFS) but this is definitely one of them.   What happens when you know a truth that’s so important it can changes lives and warrants rewriting the book on ME/CFS, yet no one that’s actually experienced said truth will ever believe it?  Nothing, mostly.




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. I think that these are all really good and important observations and hypotheses.

    I agree with you that exercise is a really good way to detoxify, and I think it goes beyond just sweating. The movement forces the toxins through the lymph, and increased metabolism should release garbage from the fat cells. Thus, while a sauna (FIR or other) may be a useful thing for those of us who have gotten to the point of being clear, it doesn’t seem like it’s a full substitution for exercise.

    During the past month or so here in Palm Springs, I’ve been doing a “hot yoga” class (the room is heated to 105 degrees) three times a week. Undoubtedly the sweating that I do is a good thing, but the deep stretches that the heat allows seem even more important. (Unlike you, I do have some fibro/fascia/trigger point issues.) I always feel really good after class, and am thinking in light of your post that I should make an effort to go every day (or to do some other sort of vigorous exercise) in the future.

    As you know, I spent over a year on antivirals (Valcyte and Famvir), so the idea that you have viruses in your heart is hardly something that I’m questioning! (I came up elevated for CMV on occasion myself.) And certainly, the runaway viruses that CFS patients have in our bodies are a very bad thing. The question that I increasingly have is why these viruses are such a problem for us, and based on my own experiences, I keep coming back to the toxins.

    My thinking right now isn’t that far from what Amy Yasko says about pathogens and toxins being bound up in the system, except that when she talks about viruses she mostly seems to bring up mercury. Regardless of whether we’re talking about mercury or biotoxins though, a big issue here seems to be inflammation in the tissues where the toxins are sequestered. It’s my understanding (and perhaps someone who knows more about viruses than I do will pitch in here) that both herpes family viruses and retroviruses flare with inflammation, and so the idea that these would be particular problems for people with a heavy body burden of mercury and/or biotoxins doesn’t seem that unreasonable to me.

    If that’s the case, it still seems conceivable that antivirals/antiretrovirals could be helpful to us (and I think that they did indeed help me). But if the reasons that our bodies are overloaded with viruses is due to their being overloaded with toxins (though this obviously is just a hypothesis), then in order to really recover our health, focusing on removing the toxins seems a possibly good strategy. Valcyte and Raltegravir are toxic expensive drugs, so remaining on them forever does not seem like an optimal plan.

    Thanks so much for sharing your experiences on this blog. Things are starting to get exciting!

  2. Here’s a blog of someone trying to use csm in a place that I would have to swallow very hard just to consider visiting (East Lansing, Michigan). He’s having a hard time of it too. But we can watch to see if he is able to resolve the problem.

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