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Post by enochroot on May 7, 2008 21:28:06 GMT -8
The 3rd orthopod I have seen , gave me a script for cortisone orals (prednisone) so - this will be a real experiment ;D IF I do indeed have post Lyme or an unresolved infectious agent - i should feel pretty bad after this 9 day course Day 2, and no particular problems so far.... Seeing a spinal specialist Friday - guy is doing artificial cervical discs for people or so I have seen on some support forums, don't know of course if he is gonna pitch that for my case
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Post by itsybitsyone on May 8, 2008 6:07:01 GMT -8
Let me know. I have a vested interest in cervical spine proceedures.
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Post by LymeEnigma on May 8, 2008 7:41:05 GMT -8
I will be holding my breath until you've finished the prednisone course, enoch. I took a course of prednisone somewhere between eight and ten years ago, when I had my sulfa reaction, and I remember feeling pretty good on it; I remember I got a lot of housework done during those two weeks ... I guess that blows out, or at least complicates, my whole theory regarding my life-long infection-related "fibromyalgia".... Let us know how the appointment on Friday goes. *edited to fill in a forgotten word
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Post by itsybitsyone on May 8, 2008 9:44:22 GMT -8
No it doesn't, LE...
My friend has a genetically supressed immune disease. Before they knew that caused her chronic respitory infections, they gave her pred all the time. So much that it ruined her joints, in fact!!
And it was one of the few things that made her feel well...even though it was furhter supressing her immune system...
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Post by LymeEnigma on May 9, 2008 10:00:23 GMT -8
Okay ... now I'm trying to figure out whether the giant "mystery rash" on my face during that time period came before or after the pred ... it was so long ago, and I never really had an explanation for it, I had actually forgotten about it.
I had what the docs initially misdiagnosed as a fungal infection on my left cheek, but the antifungal cream only made it worse. I don't remember if it was the steriod cream of the antibiotic cream that finally made it go away, but it was there for a good month, migrating up and down my cheek. I don't remember exactly what it looked like, but I remember fearing ringworm ... EM?
I'm really confused, now, though: I have read that a lot of people with Lyme develop a strange and unbearable "pain syndrome" throughout their bodies after taking steroids, which I did not experience at that time ... but I was already puking bi-monthly by then, so who knows what the heck might have been going on with my body already?
Enoch, how are you feeling?
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Post by enochroot on May 9, 2008 19:12:51 GMT -8
Hey Lymies! Finishing 3rd day of pred, no particular issues -yet... My son is half way through his bone fixator(yay) Saw a top spinal guy today Erash Emami MD, Liked him. Straight talking looked me in the eye answered all my questions thorough medical history he actually read... Told me to try a few more things and give it another 2 months before the "S" word Even then, said a cleanup of the rupture at the one major disc site was the thing, no need to talk about one or two fusions at this point in the game ;D BIG relief...I had visions of the guy looking at the MRIs and saying "damn, you're screwed pal, " Saw an exray of a scoliosis kid (little girl) that was brought from Iraq , for him to help (mounted on his wall with an article) Her spine is half hardware now But if she can make it through, what can I say
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Post by enochroot on May 9, 2008 19:22:03 GMT -8
Funny you should mention rashes, LE, I posted a while ago about a rash - itchy raised on the side of my ankle - that months of OTC antifungals, antibacterials, and steroidal type cream(ELIDEL) did not touch...My regular GP put me on this stuff CLOBETASOL...really knocked it down. Still pops up a bit, and now on the base of my fingers on my left hand.. I am guessing an immune thing at this point.
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Post by nyxie63 on May 10, 2008 3:25:13 GMT -8
The 3rd orthopod I have seen , gave me a script for cortisone orals (prednisone) so - this will be a real experiment ;D( Funny the way my mind works. Read that line and visualized a lobster in a lab coat. Arthropod/orthopod - close enough, right? ;D Glad the prednisone isn't causing any major problems for you yet. Any improvement so far? Hooray for no fusions! Glad to hear your son's getting better.
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Post by LymeEnigma on May 10, 2008 11:24:29 GMT -8
This last visit really sounds promising, enoch. I'm glad to hear that you've found someone who is willing to consider all options before cutting you open. The orthopedic surgeon I saw for my shoulder was a good one, too; put me in physical therapy instead of jumping to more rash solutions to the long thoracic nerve palsy. There are still a few good ones out there. That's strange that your rash keeps coming back, enoch. I get lupus-like rashes on my face and upper body, but I haven't had another EM for a couple of years, now (since that bout when I looked like leopard woman). I do get eczema in various places, which I also attribute to some kind of autoimmune response. Arthopod ... orthopod ... one has green blood, right? ;D
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Post by enochroot on May 14, 2008 20:29:52 GMT -8
Well - tomorrow is the last day of the Prednisone.... So we shall see what weirdness if any erupts at the end of the week Always read in Lyme data about reactions at the end and after - a steroid course of treatment. Actually - the "orthopod" thing comes from the PT's (physical therapists) - shorthand the ones I am using apply to orthopedic surgeons. Two weeks to go until "pins out" of my son's bones. Starting spinal cortisone next week (?) at least one - if it means no surgery what the hell
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jarla
Contributing Member
Posts: 37
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Post by jarla on May 15, 2008 15:28:39 GMT -8
I was on prednisone for two weeks in February. I felt awesome. I felt ok for about another week. Then my body went haywire, and by the middle of March I could hardly walk. This is all to say that it may take a few weeks to see if there's a negative effect from the steroids.
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Post by enochroot on May 15, 2008 21:21:19 GMT -8
I will be on alert for the FX to be sure
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Post by cobweb2 on May 16, 2008 6:28:17 GMT -8
I found an article in a hard copy medical magazine entitled "We've Got Your Back".
The information is particularly directed towards those with degenerative disc conditions with a set of exercises for fighting back pain. They look doable to me with a little bit of effort.
But of course, there is this chasm in my brain between intent and a little bit of effort.
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Post by cobweb2 on May 16, 2008 6:37:48 GMT -8
Here's a link to Johns Hopkins Spine Center with a video seminar on the spine-if you have the time or the inclination. www.hopkinsbayview.orgJust click on the picture of the spine on the left side of the screen.
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Post by LymeEnigma on May 16, 2008 9:08:24 GMT -8
Good to know about the prednisone, jarla ... and thanks for posting the link Cobby.
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