I hate to say it, but the buffered salt tablets I've been taking have almost completely lost their effectiveness. This is such a disappointment, as the improvement I experienced when first taking these some months ago was almost miraculous. Apparently though this is not uncommon. I've been doing some research, including following up with Dr. Rowe at Johns Hopkins, and he suggests trying a medication called Florinef, which helps the body retain water. Also, the Canadian Consensus Criteria document (see pg. 13 under 'Orthostatic Intolerance') mentions, "If increased salt intake helps initially but loses its effect, consider fludrocortisone (Florinef)." As I said, not uncommon. I will ask Dr. Klimas about Florinef when I see her next month.
Meanwhile, I have a new roommate. He's about 40 years old, in great shape, looks like he's my age, and is incredibly active. Already making me feel like a total loafer. Up until 3 a.m. one night, then up at 7 the next morning to go to the gym. Then out dancing that same night for several hours. He doesn't know how lucky he is.
Lastly, I saw an amusing video on youtube, about the CDC's smoke and mirrors campaign in regards to CFS. Have a watch.
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Hi, David -
ReplyDeleteI came across your blog when I saw your comments on another. I have had CFS for 8 years and my two sons have it also.
Dr. Rowe has also consulted with us on my son's OI treatment - they take Florinef and Thermotabs, plus lots of Gatorade.
For both of them, Florinef was like a miracle - took my oldest son from being about 50% bedridden and needing a home tutor for several classes to being back in school full-time (he's 16 now). Unfortunately, Florinef didn't seem to work for me - Dr. Rowe says it's fairly common for it to work for kids/teens but not for adults. Still, I agree that it's worth a try, and I hope it will help you. You're in excellent hands with Dr. Klimas! Don't forget that besides extra salt you also need LOTS of fluids. Florinef only works with huge amounts of both salt and fluids. I hope it helps you!
Sue
www.livewithcfs.blogspot.com