tag:blogger.com,1999:blog-17300038.post116264201918144527..comments2023-12-12T10:04:01.508+00:00Comments on These Things I Know: Go on, treat me...Ciarahttp://www.blogger.com/profile/01908098909334331994noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-17300038.post-1163077998692917852006-11-09T13:13:00.000+00:002006-11-09T13:13:00.000+00:00Ta for this Sue.I tried Florinef too and it helped...Ta for this Sue.<BR/><BR/>I tried Florinef too and it helped for a while but I eventually had to wean off. I'll check out the link.<BR/><BR/>-CCiarahttps://www.blogger.com/profile/01908098909334331994noreply@blogger.comtag:blogger.com,1999:blog-17300038.post-1162828846502431062006-11-06T16:00:00.000+00:002006-11-06T16:00:00.000+00:00Dr. Bell is one of our favorites, too. My son, Ja...Dr. Bell is one of our favorites, too. My son, Jamie, and I were lucky enough to go see him (he's located near my hometown where we visit a few times a year). I agree that Orthostatic Intolerance is a key aspect of our illness. Both of my boys now take Florinef (helps the body hold onto more salt and fluids), and the effect has been astounding. Jamie was couch-bound about 50% of the time last year and this year is back in school full-time, back in band, and even playing soccer. Florinef doesn't always work as well for adults (alas), but I'm getting ready to try it and some similar treatments again. Check out Dr. Rowe's overview of OI and treatment (he's the doc that first identified OI as a part of CFS; another incredible doctor who's helped us hugely):<BR/>http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm<BR/>Dr. Rowe will even work with your doctor by phone - he's doing that now for our younger son. Meanwhile, try plenty of Gatorade and V-8 juice (lots of sodium) - I can't tolerate the salt tablets either, but these drinks really help. Hang in there and take good care of yourself - <BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-17300038.post-1162806889391478622006-11-06T09:54:00.000+00:002006-11-06T09:54:00.000+00:00love the idea of going to the healthcare casino an...love the idea of going to the healthcare casino and putting my chips on the table. Brilliant!Anonymousnoreply@blogger.com