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Post by enochroot on May 21, 2008 21:02:42 GMT -8
Been a week since the finish of the 9 day - nothing unusual yet...
Saw a guy the spine surgeon sent me to - going for a cortisone injection in the neck June 4th, bummer to wait 2 weeks but such are appointments!
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Post by LymeEnigma on May 22, 2008 8:45:04 GMT -8
Good luck with that!
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Post by itsybitsyone on May 28, 2008 12:46:40 GMT -8
Any update??
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Post by enochroot on May 28, 2008 20:39:10 GMT -8
Well, today is two weeks since stopping Prednisone - been feeling especially crummy past two days but not call in sick stuck in bed crummy, just ramped up fatigue and general bodyache. That hasn't kept me from walking three miles a night during my 4am lunch time Is this to do with the Pred? I haven't a clue... ONE week to go until my first spinal injection - what with the therapy doing nothing I can detect to improve the neck/shoulder issues I am looking forward to it! Thanks for asking
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Post by itsybitsyone on May 29, 2008 3:42:14 GMT -8
Well, I have a friend who has been on and off prednisone all her life. More than anyone should have been. Luckily they finally found the real problem and she is getting IVIG now...
But, I digress, I remember her going on pred and feeling better, coming off and feeling worse than she did before she went on it. So, maybe that's normal. You did wean off right?
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Post by LymeEnigma on May 29, 2008 8:18:34 GMT -8
Sorry you're feeling so crumby right now, enoch. I hope it's not the pred.
I'm going to cross my fingers for you, regarding the injection. My cousin gets one every once in a while, for nerve damage in the sciatica area. He says it works like a charm (although he claims the initial injection is hellish if they don't put him under); sometimes they don't get injection in the right spot ... and they don't last for the months they're supposed to ... but he's also addicted to pain meds, so that might have something to do with it.
I hope this works for you.
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Post by enochroot on May 29, 2008 16:59:37 GMT -8
Thanks LE, Itsy, yes, ramped down dosage final 3 days of the 9 days. Been banging on the door so to speak, of Stanford Medical for more about CFS and antivirals...Made some progress but am stalled again response-wise...All else fails, thinking of trying a course of Zithro and Plaquinil if I can get Dr C to go with the idea - he is big in IV Rocephen What is "IVIG"?
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Post by enochroot on May 30, 2008 0:21:36 GMT -8
Finally got a response from the Stanford docs...They "cannot comment on individual cases" and so ignored my questions, and sent a form letter But I did find the info to proceed if I can get my doc or some other doc to do so - Just need to decide: Go back on a course of ABX again suspecting unresolved Lyme or such. Or try an extended run of an antiviral, not as good as Valcyte ($$$$) but spoken of to have effect... Only Dr C will do the ABX, might get my GP to do the antiviral....
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Post by LymeEnigma on May 30, 2008 10:35:19 GMT -8
Finally got a response from the Stanford docs...They "cannot comment on individual cases" and so ignored my questions, and sent a form letter That sucks ... but I guess they have to cover their butts, for whatever legal reasons. Any info you can share? I think that's the ten million-dollar question....
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Post by enochroot on May 31, 2008 17:10:36 GMT -8
The info being that antivirals can help CFS, and the preliminaries from the Stanford folks got a 70% response(as in most of the group had improvement). But that was with 14 months of Valcyte (super expensive - $30 a pill/4 pills a day) BUT...There are studies to indicate Valtrex (the popular one given for Herpes) is effective...Just not as effective - but a whole lot more affordable! I will post the links from work - have them saved on my work PC.
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Post by enochroot on May 31, 2008 17:16:08 GMT -8
I am currently taking (started 2 days ago) the Samento (cat'sclaw extract) and Cumada (another Nutramedix Amazon plant extract) - added to my Transfer Factors (why not?) Saw them listed in soooo many herbal Lyme protocols I figure "what the hell!"
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Post by LymeEnigma on Jun 1, 2008 9:46:54 GMT -8
$30 a pill?! That's highway robbery! I'd go with the Valtrex.... Got those links?
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Post by enochroot on Jun 2, 2008 1:16:31 GMT -8
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Post by nyxie63 on Jun 2, 2008 2:52:36 GMT -8
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Post by itsybitsyone on Jun 2, 2008 4:18:36 GMT -8
IVIG Is intervenous replacement of antibodies. Kinda like a white cell transfusion but not exactly.
There is some work with this with Lyme as well.
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