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Old 07-17-2007, 09:13 PM #11
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Default Roxie--

--what makes your doctor think this is West Nile? Have you been titred up for the antibodies by ELISA test, and, if this was positive, has it been confirmed by Western Blot test?

Wings has a point about watching for the "bird signs", as does Dahlek--the testing for both West Nile and Lyme can be rather unreliable.

There are certainly numerous other infections that could be causing your symptoms--not to mention this could be well within the pararmeters of an IVIg reaction (and yes, IVIg is most certainly a blood product)--how extensive/exhaustive has the testing for this been?
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Old 07-17-2007, 09:41 PM #12
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Default Roxie, I really wouldn't worry...

I think Glenntaj is right?
I do know that my area newspaper reports under an 'animal update' any creatures who have been captured and reported with 'rabies, west nile, and other issues' on a weekly basis. I even called them about a rabies report which occurred in my neighborhood - all were helpful...
The dead bird thing is real and true - one can shovel up [NOT touch] and bag a creature and call for pick up...or you drop off...it's tested and you get feedback.
As for 'getting' West Nile from IVIG...purty durn hard! Here's a link to the FDA...Believe me, this stuff is gathered, registered, certified, processed and pedigreed well, better than MILK! Far, far better than any manufactured narcotics for sure.
This to me, is one of the SAFEST treatments [IF properly prepared and administered there is ever!
http://www.fda.gov/cber/blood.htmed by the pharmacy and infusion specialists]

Believe me, I checked all this stuff out thoroughly before I decided to TRY it, then commit to it!
More Hugs - j
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Old 07-19-2007, 08:28 PM #13
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Default Roxie! Where are you??

Roxie,
How are you doing? Let us hear from you.

Billye
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Old 07-19-2007, 08:32 PM #14
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Default Roxie, I agree with Silverlady....

What is going on? Even if there's nothing to report...nothing can be a good thing? 's - j
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Old 07-19-2007, 08:37 PM #15
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HI! Sorry haven't felt up to even typing the last few days. Tomorrow I get the blood test results to see if I have West Nile or not. Mike and I think it's just a bad reaction to the Fentanyl patch. I tried it twice and both times (the same amount of hrs after putting it on) I got the severe headache and all the rest. So it'll be interesting to hear those test results tomorrow.
Also tomorrow afternoon I see my Pain Management dr. again.....hopefully he can give me something for this rotten pain I'm having.
My dr. didn't want me to do the infusion this week since I've been running a temp. Now I'm in major nerve pain.......so I think the IVIG is helping because now that I haven't had it for a week I'm in pain. So hopefully I can get the nurse lined up to come out early next week for my next infusion.
Billye.....are you swimming there yet??? We had several more inches of rain here in Houston today and more to come for the next 4 days! Mike had to drive through at least a foot deep water this morning to get to the main street near us! Deep water scares me!! Hope you are high and dry there!
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-19-2007, 08:51 PM #16
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Default Whew!

Well, such test results so quickly - tomorrow? IS gonna be a relief...what they tell you will probably mean, [if my own humble experiences have relevance] CONFUSION? I somehow suspect that you are more 'currently' read, or up-to-date on any potential diagnoses than they are...so arm yourself with the KEY basic diagnostic questions...and ask: What about 'Lymes' etc..I don't think I 'fit there' because... test these folks...challenge them, let them know, you are NOT a YES! Doctor G*D type of person.. Remind them that YOU are the PERSON attached to this 'patient' problem!
YOu are getting GOOD about putting patch, vs infusion actions/reactions together...be as articulate to your docs and you are going to absolutely GET where you need to go! I have faith!
Faith, at times, is all we have to go on! In ourselves, our instincts, in what IS or IS NOT being done to us...and how. Go for IT lady! Go get 'em! - j

Can I also say 'GLURB'? How totally DAMP and all that!
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Old 07-19-2007, 09:22 PM #17
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Hi Roxie.

I do hope tomorrow goes well for you. I'm off to Cornell Medical Center at Weill. See, we're both going to the doctor tomorrow!!!!!

My cousin's wife, who has neuropathy because she had six back operations due to a tumor growing on her spine, well she can't tolerate the patch either.

She can't tolerate anything in fact. She's tried it all. Lidoderm patches, vicodin, etc. Her neuropathy is all in the back of legs, feet, up her thighs and to her waist. She's completely numb and she gets the pins and needles constantly. I don't know how she does it. She take care of a handicapped daughter.

She's really something. I admire her tremendously.

They just put her on yet another kind of morphine pill. Don't know the results yet.

So best of luck tomorrow.

Melody
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Old 07-19-2007, 09:26 PM #18
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Good Evening J!
Yep I'm sure they'll give me a bunch of crap tomorrow along with the test results. Mike printed off the symptoms for the reactions for the patch.......I fit in the section for reaction that only 10% of those who get this reaction from the patch.....so we'll see what all those great minds have to say to me tomorrow.
I'm just ready to feel better again. Tonight my legs and fingers are very stiff and my whole body is aching. I've slept a lot in the past 5 days (which is unusual for me) and I keep breaking out in a sweat. UGH!!!!!
I'll let ya know what I find out tomorrow. Love hearing from you.....and all the others......
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-19-2007, 09:35 PM #19
dahlek dahlek is offline
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Default The sleep and all? Yep...

That is what I call part of the 'pay-back' process...Stress equals too tired to do much of anything?

As for the stiffness? Well, it could be due to the IVIG or the patch or anything else? That's why I am one firm believer of one thing...then 5-7 days later doing anything else new...that way you get a handle on which what is causing which whats....? I get stiff, but I've always attributed it to the 'conditions' not to any particular one nor therapy... OOOH in a way that scares me? It's like I've got it sorted it out or something? Noooo. It couldn't be!

Sleep, recover, get back on some sort of LIFE schedule... that is what is important! - j
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Old 07-19-2007, 09:44 PM #20
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Good luck tomorrow Mel! I hope your appt. goes well.
Gosh I feel for your cousins wife and all she's going through! This Neuropathy really sucks!
I'm allergic to lots of pain medication.....so I'm just hoping they can find one I can use. Take care!
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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