by Nancy W » Fri Jul 02, 2010 2:02 pm
Very interesting, David.
What I find the most interesting is that it takes a certain dose to take away the symptoms. I am just theorizing here, but I wonder if these certain things replace something that should normally be manufactured by the body, but isn't any longer due to statin damage. This seems to be true of my current supplement regimen. If I miss a few days, or sometimes one day, bingo! Neuropathic pain. Like yesterday was crazy busy...we were heading up to camp, but first I worked half a day, then ran all sorts of errands in the afternoon. Plus, I had been awakened by our puppy throwing up grass at 3 AM, and didn't get back to sleep. I was so fatigued last night...weak, too. We were up camping, and I was walking our two Goldens, both of whom pull on the leash...I could barely control them! Then I was getting shooting pain in my face.
I didn't forget everything today...I am certainly taking less than I had to after the initial onset of the neuropathy, weakness and fatigue...but I can't get off of any of the things I am taking.
Interestingly we are camping at the same place where I had the sudden onset of symptoms last August. At that point, I was in the best shape of my life, could practically run up the mountain trails, leaving my husband in the dust, panting. I was exercising aerobically 5 days a week, and had a resting heart rate of 50. My resting heart rate is now back at "normal," 70. Hiking last night with my little grandsons, I was a completely different person. Weak, easy fatigue. I am going to hike one of the two trails we did last year, leaving plenty of time...I am very interested in the comparison. I know it will be hard.
If any of you docs are following the discussion here...it might be very interesting if someone like Dr. Golumb would do another study, focusing on mitochondrial damage. Perhaps she could look into the ATP test that is being tried for CFS in England. Then call for volunteers from this group, testing for mito damage, then investigate the various aspects of the mitochondrial "cocktail," as well as L-Arginine...
IMHO, we, being this group, are only the tip of the iceberg, and the iceberg is growing bigger and bigger. Yes, some more encouraging information is getting out there, but I don't see the medical community even discovering this info. When I talk with docs, they are a) shocked by my level of knowledge, and then b) shocked when I share Golumb and others' research. They still have no idea about adverse effects other than muscle issues and rhabdomyolysis. I have grown very bold, bolstered by the knowledge I have gained from this site and from "our" doctor's books and research. I readily argue with them, and assert my position and they discover they really have nothing to argue back with, other than what some drug rep tells them.
I think that the mitochondrial issues are where the research needs to focus. It may be that the people labled as chronic fatigue also have mito issues...perhaps theirs are related to other chemicals which affect the mevalonate pathway, or directly affect the mitochondria.
I will add, that when I went through physical therapy school over forty years ago, there was so little of this information available. Yes, we knew about mitochondria then, but so much more is known today. It is amazing!
David and others who watch, thanks for being so observant of the research that is out there...we owe you all a debt of gratitude for your vigilance!
I am eager to hear more about the trial of L-Arginine.
And to the docs on this site...thank you for your persistence in your fields. It takes a long time to wake up entities as stuck in the mud (and money) as allopathic medicine and big pharma!
Happy Fourth of July all! Nancy