Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 " bob niederman " <bobn1955@...> wrote: > > Where in " low intensity exercise " does professinal soccer fit? I agre that exercise within your limits is a good thing, though. > And it seems no less unlikely that Jarrett could continue to play piano, when the CFS I saw caused people to be unable to sit up, watch TV, read a book, or remember their own phone number. How many people have lost their car keys or wallet, only to find them later when they open the freezer? Dr Cheney was worried that people would become deconditioned, but attempts to stand up set a pretty strict limitation on what you could do - when you just pass out. But as we saw wild variations develope in peoples illness, it became pretty clear that the way individuals were affected was so unpredictable that we couldn't necessarily rule someone out of CFS just because they were able exercise or think at odd times - while not at others. It's like the weirdness of being so slammed during times of weather change. It just seems to make no sense at all unless you know what is causing it. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 The co-cure list has several articles on Jarrett. Classic case of acute-onset - he couldnt even *listen* to music because it made him sicker, looking at sheet music made him dizzy, maybe still does. He said it felt like aliens invaded his body, and the the correct name should be " forever dead syndrome " . He is/was being treated with long term antibiotics of " interstitial pacterial parasites " - but he had to stop playing for 2 years and now the 'solo concerts' days are over - too hard - but he does record, and occasionally tour, in a trio. I think Jarret has what you have, or at least something which at it's worst was fairly indistiguishable; I don't think Akers does/did. Running around full speed for an hour at a time just doesn't fit. But there is a lot of variability, so I could be all wet on this. - Bob N. On 10/28/06, erikmoldwarrior <erikmoldwarrior@...> wrote: > And it seems no less unlikely that Jarrett could continue to > play piano, when the CFS I saw caused people to be unable to sit up, > watch TV, read a book, or remember their own phone number. > > How many people have lost their car keys or wallet, only to find > them later when they open the freezer? > > > But as we saw wild variations develope in peoples illness, it > became pretty clear that the way individuals were affected was so > unpredictable that we couldn't necessarily rule someone out of CFS > just because they were able exercise or think at odd times - while > not at others. > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 It definitely was a symptom in the beginning. Eyes would burn, hands would become cold, legs would be on fire, brain would become usless, and let's not forget migraines. But after years of treatment, and continuing treatments and supplements, exercise is possible, within thresholds. Proper treatment over time is the answer to this question of exercise, and how Akers could do it. The post about INcline Village.. the inability to stand and having to l ean.. described me entirely, and prohibited exercise.. before I started taking Lisinopril.. a blood pressure medication that causes vasodilation. Topamax stops my migraines. Magnesium and elavil relax my muscles. Reduced Lglutathione gives me energy, as does provigil, without which I could not work. Valtrex is my antiviral, and naltraxone gives me my immune system. Antibiotics fought off the other bugs I was postiive for in the past, for years. P5P, a precursor to a B vitamin was also essential for my irregularly shaped red blood cells, which are now normal. Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 " bob niederman " <bobn1955@...> wrote: > > The co-cure list has several articles on Jarrett. Classic case of acute-onset - he couldnt even *listen* to music because it made him sicker, looking at sheet music made him dizzy, maybe still does. He said it felt like aliens invaded his body, and the the correct name should be " forever dead syndrome " . > > I think Jarret has what you have, or at least something which at it's worst was fairly indistiguishable; I don't think Akers does/did. Running around full speed for an hour at a time just doesn't fit. > > But there is a lot of variability, so I could be all wet on this. > > - Bob N. Totally agree. I try to keep an open mind, but being able to participate in any sports or physical activity was completly off the table - gone! All of us in Incline could be easily discerned even at a distance because we literally staggered with a peculiar and disctinctive 'gait' from places where we could sit - to another place where we could lean or sit again. Nobody could stand unaided for long - let alone walk fast or run. We couldn't hide our condition if we ventured out, anyone could spot us - if they weren't " brainlock denialists " . When someone is clearly suffering with something that sounds really similar, I hate to say " Your description doesn't fit " , but the inability to exercise or tolerate the after-effects was the absolute hallmark of CFS. Or at least, " CFS " as it was in the beginning. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 I think the info below is right on the money. I was diagnosed with 'CFS' by four docs, two of which were infectious disease specialists. However, after the initial devasting symptoms, I have been snow skiing, I do my own yard work and play basketball w/ my daughter sometimes. . I also get extreme post exertional fatigue if I overdue things. I guess you could say I have CFS 'light'. , I have observed that a lot of people have extreme symptoms initially, within the first 1-3 years, then maybe 1/2 improve but never get back to 100%. The other 1/2 stay real sick. Mike C (oh yeah, my weight went from 155 pre CFS to 123 now as well) In , " erikmoldwarrior " <erikmoldwarrior@...> Bob wrote: Running around full speed for an hour at a > time just doesn't fit. > > > > But there is a lot of variability, so I could be all wet on this. > > > > - Bob N. Then wrote: > Totally agree. I try to keep an open mind, but being able to > participate in any sports or physical activity was completly off the > table - gone! > All of us in Incline could be easily discerned even at a distance > because we literally staggered with a peculiar and > disctinctive 'gait' from places where we could sit - to another > place where we could lean or sit again. > Nobody could stand unaided for long - let alone walk fast or run. > We couldn't hide our condition if we ventured out, anyone could spot > us - if they weren't " brainlock denialists " . > > When someone is clearly suffering with something that sounds really > similar, I hate to say " Your description doesn't fit " , but the > inability to exercise or tolerate the after-effects was the absolute > hallmark of CFS. > Or at least, " CFS " as it was in the beginning. > - > Quote Link to comment Share on other sites More sharing options...
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