February 17, 2008 at 7:24 pm #299796KimParticipant
With all the confusion on the boards yesterday, I don't know if you saw my post regarding problems you're having so I'm resending it.
Sorry you've hit a rough patch. I herxed after the 10 IVs, but not horribly. Always lots of pain in my large joints, but I totally agree with the others on the importance of exercise. Even if it totally wears me out, my joints feel better. The circulation is imperative to adequate lymph drainage, so I'd urge you to try and move some each day. You'll be surprised at how quickly you can add time to your routine. The strange thing is after I work out the areas of thickened skin feel even tighter, but then it settles out. Makes no sense to me, but then again nothing else about these diseases makes sense either!
You asked about dosing. I am one of the few SDers that pulse dose and am doing quite well with that. Dr. S. is fine with it. After the round of IVs in Iowa, I now take 200mg. Mino MWF, and every other Friday I substitute Mino with 500mg. Zith. We first tried the combo of Mino and oral Clindy, but that did not work as well as the Mino/Zith combo.
Do hope you can find your right dose and get this turned around quickly….Kim
[/color]February 18, 2008 at 5:19 pm #308939GayGParticipant
Good morning!….yes I did get your post and THANK YOU!….AND I decided to give pulse dosing a try, for a little while at least, and then I'll increase back up to daily dosing slowly……I didn't take my mino on Saturday or Sunday, but I started taking it again today for the Monday dose…..AND I am doing MUCH better this morning….pain is down to a level that I can deal with….I also took the advise to get off my butt and get moving again. I got out yesterday and took my son to the book store, then we went to Central Market and I had a blast shopping for fresh vegetables, etc…..I need to get back to eating healthy again now that I'm back on my feet from the UpperRespiratoryInfection. I learned something though, most of my severe pain has been from “herxing” and I didn't realize that, I thought it was all due to the illness…I never would have realized that if I hadn't gotten the URI and was off the AP for about 5 days….so now I can work on controlling the pain that comes with herxing better…..The Lemon/Olive oil drink also makes me Herx…but now I know that if I'm going to drink it that exercise to lessen the pain is crucial AND it also helped to lie down for about 10 minutes occasionally with my legs elevated above my heart…(I think it was Maz that mentioned that)…Thank you all for your help with this…..there's not anywhere else to turn to when you have these kinds of issues and I was really “suffering”! I have a very high pain tolerance but after a while it gets to be too much…… You're angels! Gay
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