I can still hardly believe what I’m typing.  PEM, the hallmark symptom of ME/CFS.  Gone.  I increased my hike from a leisurely pace intent on keeping my HR below 105 at all times to a brisk pace with my HR constantly at or exceeding my anaerobic threshold (according to Pacific Fatigue Lab calculations of [220-age]*0.6.)  Not only that but I increased my hiking distance to 50 minutes.  My HR was at 120-130 nearly the whole time I was hiking today.  (That number freaks me out because clearly I still have POTS and I’m acting as if I don’t. )

By the end of the hike, my muscles were actually in quite a bit of pain (I don’t have fibro, for the record). It’s an almost alien sensation to feel my muscles aching like that, clearly due to my body’s reliance on anaerobic metabolism leading to lactic acidosis, while actually feeling totally clearheaded and, well, “good” overall.  Still I keep waiting for the PEM hammer to fall.  It’s usually when I discover I feel better at the end of the hike versus at the beginning, that I sheepishly allow in the option that I won’t get PEM.  Feeling better after any degree of exercise, mild or moderate, is something which has never happened before in all my 6 years of ME/CFS.

Oh and it’s not as if I’m resting for the rest of the day.  Here’s what else I did today:

* 3 loads of laundry in the morning followed by hang drying

* Driving to check out a few other RV sites

* Shopping at two different health food stores

* Getting on a one hour conference call followed by a phone conversation with my parents

* Hitching my trailer and driving to another RV site (this would’ve been the only activity I did in any given day in the past — hitching is physically taxing, and towing sets my adrenals off)

* Read legalese and did work for the last 4 hours on my computer.

So in a nutshell, my legs feel like battery acid, and I was a bit winded earlier (not anymore) yet I still plugged onward as if I hadn’t hiked for almost an hour.

The caveats: I know for a fact that I am still very reactive.  I tried out 2 different RV parks in town and my symptoms got worse.  They were in towns with relatively good air, but where I was staying before was in the middle of nowhere.  I’m not sure I’m able to exercise like this when I’m staying in an only moderately good place, because that triggers just enough inflammation and PEM to disturb my digestion and sleep profoundly (they go hand in hand for me).

Having always been a city lights guy at heart, I never thought I’d say this, but I’m hardly concerned these days about being away from the big city.  I thought being out in the barren desert would never be an option for me, even at bedbound status, but when you begin to lose your hallmark ME/CFS symptom, perspective, priorities, everything really changes.  This seems like mung beans to pay to be able to exercise again.  Moreover, with mobile internet devices, we’re hardly that disconnected from our old circles.  In the middle of nowhere, you can find others that also came to the middle of nowhere for purposeful reasons.  The fresh organic juicer and boutique health stores 4 miles away certainly don’t hurt.  It’s still civilization, it’s just not urbane.

On a side note: I had some very engaging and generally positive dialogue with some folks on Jamie’s blog the last 2 days.  I know better than to get my hopes up that the tide has shifted, but I do hope that our debates on the efficacy of biotoxin avoidance catch the eye of open-minded and analytical patients in the position to do something about this.   As a patient whom is as classic of a ME/CFS patient as they come, I do wonder how many patients could be hiking with me if doctors told patients to try biotoxin avoidance and avoidance efforts were planned and paid for by someone else besides ourselves.  Instead, most of these patients are waiting for a drug which does much of the same thing but takes longer (ampligen) to become affordable, or for drugs to treat a retrovirus which may or may not exist or be causative.  While a non-toxic, DIY treatment that costs what you spend on rent over 5 years is readily available right now.

In any case, I will post this exchange soon, as maybe some of you have the same questions or thoughts that our friends on Jamie’s blogs had.

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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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