West Nile..........
 

I saw my Rheumatologist this morning.....he said it's not the patch or the infusion.....he thinks it's West Nile Virus!
I'm still running the temp and feel like crap, which he said will last a few more weeks if it is West Nile. He took a bunch of bloodwork and I'll get those results on friday. He said to cancel my infusion for this week until he figures this out for sure and to go ahead and put the patch back on.

Oh My Gosh!!!!!!!!!!!!!

Wow, I'm so sorry to hear that.

(((((((Roxi)))))))

As an aside, I leave a light on at night and it appears to attract the mosquitoes... which I tend to find dead under it in the morning...

Oh My God.

Of all the stuff I was prepared to read today, your post was not one of the.

Please let us know what happens, okay??

Thinking of you...:hug:

If you see a lot of dead crows or ravens in the area, that's a good indication that West Nile is around. They have have no resistance at all and it's usually fatal for birds. For people it's usually just an irritation, from no symptoms to like a very mild flu except the very young, very old, or people with a compromised immune system.

I wonder if the drugs you're taking or something else has weakened your immune system? Anyway, I hope you feel better soon.

We're all pulling for you! The odds are in your favor.

Be well,

rose

Wow, don't believe this!
 

Roxie,
I was thinking today about your symptoms and remembered that you said you had been mowing the yard and that you lived in Texas. The mosquito population is horrific. I wondered out loud to my husband only a couple of hours ago if you had West Nile. Your temperature and Texas was what made me wonder this. I was just blown away when I logged in a little while ago and saw this post. I sure am glad your doctor jumped in and diagnosed this one so soon.

Please take care and I'm thinking about you.

Billye

I just got this off of the internet. You did have IVIG the other day right?

-----------------------------------------------------------------------

West Nile virus infection through blood transfusion is another topic to research, Schafer said. A recent investigation by the Centers for Disease Control identified organ transplants as one such source of West Nile virus infection. The CDC also reports that others develop the West Nile virus infection within several weeks of receiving blood products.
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IVIG is a blood product, right??

If it is West Nile, thank goodness your doctor is one smart cookie!!!!

You take care and drink lots of fluids.

Melody

Hi Mel & Billye!
Yes, I'm lucky my dr is on top of things. I do think the IVIG is a blood product. I too wondered if that's how I got the West Nile.....but we do have a gazzillion mosqitoes here with all the rain and every time I go outside I come back in scratching because I've been bitten....so guess we'll never know for sure.
I just can't seem to get well. I've been fighting diarrhea for months. The dr. has given me lots of different meds to try to get rid of it. I kept thinking it was my IBS causing it. Finally today he said he thinks I have Ecoli! He said you can get it anywhere when you eat out. I hate to even think I got it that way! So there's a new medication for Ecoli called Xifaxan that you take 3 times a day for 5 days that's suppose to get rid of it....so I have my fingers crossed! If it's not one thing it's another!!!

David, I haven't seen any dead birds around. I heard on the news to watch for them because they have no resistance to West Nile. My Doctor said I'd be his first case this year.....lucky me! lol

Roxie, I don't think it's very likely?
 

here's a Q & A at the CDC web site -
http://www.cdc.gov/ncidod/dvbid/west...a/symptoms.htm
Because I'd been active with large and small animals prior to my onset, I had all the ELISA Tests done, and it wasn't either West Nile [I was I guess a 'trial' testee for that test] and Lymes'...Both were negative.
I would bet dollars to donuts that it's your docs' way of justifying for extra tests that are not usually done, but which ARE on Liza Jane's list. Keep in mind also, that testing for Lymes' or West Nile, the results are very 'iffy' in their reliability.
I speak from a serious awareness...West Nile has been around my region since the get go, as has Lymes'. We have someone in my area recently hospitalized with the 'encephalitis' aspects of it...the individual lives less than 5 miles from my house. It's the first case in the county in 3 years...last year my state had about 8 cases and it's a big state [tho not as big as Texas]. Bug repellants, even the marigold based organics, I'm learning, are not only worth using but safe.
If this is the way to get lots of tests done and checked off YOUR LIST, go for it....I hope it's only a reaction to either the patch or to the IVIG... Try both again? Hope you find some relief and feel better! - j

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?

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

Roxie! Where are you??
 

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

Billye

Roxie, I agree with Silverlady....
 

What is going on? Even if there's nothing to report...nothing can be a good thing? :hug: 's - j

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!

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!

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

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......

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

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!

I'm sending thoughts and hugs your way. I'm so sorry for all your going through. If you need anything or even just want to vent I'm here. Please take care of yourself.

HI Gina, Thank you! I hope you are doing better today. I'm sitting here waiting for my test results to get to the dr.s office this morning. Take care!

HI All,
Well my test results aren't back yet.....seems they won't be back till some time the middle of next week. West Nile blood work is sent to Calif. and takes 10 days to get back.
I saw my pain management dr. today. He said it does sound like I had a bad reaction to Fentanyl patch. He prescribed Oxycontin for pain and Hydrocodone for breakthrough pain.
I tried to get my prescriptions filled at the CVS store.....they didn't have either in stock! so I drove to Walgreens and they said they could fill it....so I leave both prescriptions there and run to the grocery store and then come home. The pharmacy calls me then to tell me that the dr. put the wrong date prescription! Of course by this time of the day the dr. office is closed and it's Friday.....so now the dr. can't be reached till Monday! I was not happy! Thank goodness I still have some Lyrica on hand!

I thought that would be too soon...
 

to get results!
If it is where I think, and you want to learn more about blood tests than you ever thought you could learn... here is a site:
http://www.athenadiagnostics.com/con...alog/find-test

My tests took over 3 weeks, I was walking on hot coals [in more ways than one, well, you know...] the whole time.

Other aspects of my labs had gone to the Mayo...those took even longer!

Hang in there Roxie! - time, will tell.

As for any change in meds, it's just as well. I've found that IF I start a med on a Friday, and run into problems over the weekend...well the options are to stop the med, wait till Monday to call doc's office, or go to the ER. I usually opt for the first 2? Who in their right mind wants to visit an ER on a weekend nite?

:hug: 's - j

Still sending thoughts and healthy wishes. That is so frustrating. Could you have your doc or one on call paged? That is a long time to wait till Mon if in a lot of pain.

HI All,
Well I don't have West Nile.....but I do have Ecoli (that's a whole other matter :( ) So I'm thankful that I don't have West Nile. My Rhuematologist thinks the temp. I had and all the other were side effects from the Fentanyl patch. Tonight I started Oxycontin so I'm hoping that works for pain for me. The Pain Management dr. also gave me a prescription of Hydrocodone for break thru pain....which I hope I won't need.
On Wed. I have my first home infusion. I have my fingers crossed that I get a good nurse who is friendly and enjoys chatting.
Hope everyone had a great weekend. We did. We saw the Sicko movie this afternoon and enjoyed that and then this evening, after the temp dropped some, we trimmed trees in the yard and picked up tons of limbs and branches that all the rain and strong winds blew down. Now we have to mow in the morning.......before starts raining again on Thurs.....UGH!!!

Hi
 

Gee what's new,holy cow you just can't leave this place ,come back
and once again Holy cow. Glad your tests are back,and hope meds.
work. :hug: Sue

Roxie:

Glad you don't have West Nile.

Hope your home infusions go smoothly.

Be well,

Melody

HI..... I had a terrible experience last night with the Oxycontin. :( It caused severe burning in the pit of my stomach. I was up till 4am this morning. I had the same bad reaction when the dr. prescribed Cymbalta 5 months ago. So anyway.....I called the Pain Management dr. and have an appt to see him on Thurs. afternoon.......back to the drawing board!

Roxie
 

Sorry about your gut! I know you said you have problems with just ibuprofren, etc... so that other stuff is probably really gonna get ya... I cannot touch any form of opiate at all because of the severe nausea it causes - and even ibuprofen can only tolerate for a day or so (live on tylenol)...... hope they can find something to help you....

Good thing no West Nile though!:)

Roxie
 

Did you take it with food or milk,also my Dr. said they were having
some problems with that. I don't take it so forgot to ask what
the problem was,maybe burning in the tummy. Darn it,i 'm sure
they will find something for you,i'm sorry you have to wait. There
going to check the Pig Skin on my leg thurday,hope i don't have
stay,but thinking i'm going to. well oink oink. Let's hope you get
pain free soon. :hug: :hug: Sue

HI Sue, Tell me about your leg.......I guess that happened before I arrived on this site. Sounds VerY painful! Is it a burn? Dang......why do we have to have all this pain anyway???
I'm in a lot of pain today.......I guess after effects of all the pain all night. I took the Oxycontin with food last night......thinking that would help.

KMEB.......I'm taking Tylenol today and took my Lyrica. Even all that isn't helping today. I may call my dr. and see if he's in yet today.....see what he has to say.....UGH!!!!!!!

Roxie
 

Is it to late to call now,i would do it,i was talking to the nurses, when
i was in the hospital. They say the biggest change they have seen is
pain control. My leg is not a burn,but it feels like what a third degree
burn, it's a mess big and nasty. Before they got it all covered,Drs.
just kept coming in to have a look see,and kept taken pictures. ha
I loved watching those poor kids faces. Anyway i'll talk more aout it
after Thursday. Don't be afraid to call your Dr.,boy i'm on Morphine
in small SR doses,it took me 3 years to agree to that. Call now
missy. ha Takee care honey....:hug: Sue

OMG Sue your leg sounds soooooo painful! I hope that Morphine is helping you! Morphine makes me itch.....so I have to take Benedryl with it.
I see the Pain dr. on Thurs....my husband is going with me this time. I'm taking the Lyrica in the mean time and having the infusion tomorrow. Take care girl!

Yeah! No West Nile!
 

E-coli is definitely a Pain...but the alternatives are far worse!

As for having a nurse [essentially a STRANGER] come and do things...It's really not hard to 'prepare for'? Clean your house if ya can, if not, I'm betting the nurse has seen far, far worse. Provide, if they like, a freshly brewed pot of coffee, and I tend to pick up some cinnamon buns from the local grocery's bakery - just in case.
My nurse & I get along as we both like to watch [w/me falling asleep] the same TV shows for the duration. My nurse often spends time scheduling other appointments for the current or next week and doing lots of paperwork. We chat some, I fall asleep, I wake up, we mite chat more or just watch TV...for the 'duration'. It does go lots faster when you like the person tho...that takes a couple of infusion sessions to get a sense of tho.

GOOD INFUSING TOMORROW!!!!!!!!!! - j

HI J!
Yes Ecoli is a royal pain! I think I'd had it for 4 months. My dr. had given me several meds to help with what we thought was just my IBS acting up. But nothing was working so that's why he wanted to try the new ecoli medication. I'm sure glad it worked!
Thanks for the ideas for the nurse tomorrow. I hadn't thought of goodies but will grab some at the store. I usually don't sleep during the infusion so hope she enjoys chatting! lol
Take care.......I'll let you know how it goes......

I had my first home infusion today. It went really well and the nurse was great. She an RN and hasworks at one of the hospitals in Houston. It was really nice being at home and not at the center today and not having to drive all the way home afterwards!
I sure wish the Benedryl made me sleepy though....I could sleep through half of the infusion! LOL.....but it doesn't.....so I'm wide awake the whole time :(

Gosh I must really be tired.....I couldn't spell or type correctly in my post! LOL

Roxie, that all IS
 

as it should be....essentially scheduled boredom...and the SLEEPING is good!
You probably feel as if you've gotten a double strong 'cappucino' [from the IVIG] and a double whomp from the benedryl to boot! The good thing about having it all done at home, IS YOU DON'T HAVE to DRIVE home? I have to tell you, HOME is a much safer option? Could one be 'cited' for a DUI when under the 'influence' of LOTS of Benedryl?
TOMORROW you should feel like you could do some KILLER Shopping - promise me, you will do only HALF of what you want to? Save the rest of your engery for your HOME LIFE! Go slow, focus on the 'little bits' to clean, projects to do and life to live....do little bits in little bits...they add up with heaps less stress and wear and tear.
:hug: 's - j

Hi J,
Yep you're right.....I feel tired and wired all at the same time. I tried to sleep after the nurse left but couldn't relax. I felt like I couldn't wind down. Now my arms and legs are aching and feel like there's heat coming from them....but they aren't really hot.....just feels that way.
I have to see the Pain Management dr. in the morning and that's all I have planned for the day. Mike's taking me to the dr. so I don't even have to drive...Yeah! I'm really glad of that because it's suppose to be pouring down tomorrow.....and the next 4 days..... :(
My inlaws are flying in Friday afternoon for the weekend. Mike already told them I probably wouldn't be very energetic and that I'm not cooking at all this weekend.....I have such a great husband! :)