ME..or just me?
Hi, Michael; I did post a brief bio on the "Personal Stories " thread --whatever it is exactly called--I am OLD (76), and my CFS began just three years ago, which was a bit more than two years after having had open heart surgery for a stenotic aortic valve plus one bypass. From which I made a good recovery, and was again exercising well until...Dec. 2006. I had had a bug in Nov, but am not sure exactly what triggered the first attack--symptoms were chest pain, fatigue, high BP, and raised myoglobin. My current theory is that I had mild cardiomyopathy from the valve, which was largely overcome, but triggered again by a viral attack in Nov-Dec 2006, which might account for the myoglobin (not heart specific, but no other muscle in my body was giving me trouble, so..). Since then it has waxed and waned--had reasonable summers both 2007 and 2008, but was put on a heavy dose of Cozaar, an ARB, for high BP spells, and that nearly did me in (see Cheney on dangers of ARBs--that guy is smart!).
I figured out I had CFS about a year ago (finally confirmed--more or less) just a couple of months ago. I have been climbing back by first using good high lactoferrin whey (see Cheney's article on whey), then Rich van Konynenburg's simplified methylation protocol, more recently switching to methylcobalamin a la Freddd, and added Artemisinin, taken on and off; now on Artesunate (again, thanks to Cheney's DVD and later info), and seem to be recovering slowly and unsteadily but recovering still!
All in all an atypical picture, I think; for the first two years I just thought "diastolic cardiomyopathy," and that fitted many of my symptoms. But I also had sleep disturbance, orthostatic intolerance (still do), PEM (post exertional malaise), and my finger prints were almost totally erased--an odd CFS symptom again noted by Cheney. So I figure I began with mild cardiomyopathy, that was triggered into CFS by a viral attack (delayed XMRV passed on by blood transfusion during 2004 surgery??) or something like that.
I was put on a beta blocker after surgery, went off it a couple of times, took it again after the Dec. 2007 attack, and switched to Carvedilol after finding some research that suggested it was good for diastolic dysfunction, which echocardiograms showed I had, though local cardios ignored the signs and told me off for having a high ejection fraction. In fact my last echo (Sept 2008) showed my heart behaving exactly as Cheney describes CFS hears functioning in his latest (April 2009) DVD--high ejection fraction, irregular wall motion (was not present in an echo from Dec 2005, so was not due to the surgery, as the cardios here assumed), but was caused by viral attack? My heart is now quiet and usually well behaved; one day I will drop the minute dose of BB, but for the moment...
You can see that I am largely self-diagnosed--have had few tests, but I think something like that is the real story behind my history and symptoms. And the echo evidence and the raised myoglobin and the fingerprints and orthostatic intolerance and PEM and sleep disturbance (oh, and early on I had several night sweats) and so on clearly point to CFS.
Don't know if any of this is interesting or useful...but you asked! best wishes, Chris.