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    Old 10-06-2005, 07:31 AM   #151
    Roman77
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    Re: PICC line people

    tronni...I AM SOOO HAPPY FOR YOU!!! I can't imagine how nice it must be to be reumig part of your pre-lyme life, friends and fun...YAY....just be sure you don't overdo it ok? you still need to rest and pace yourself....but have fun and keep us posted on your adventures. i'm also happy to hear that your doc is tkaing steps to help you return your toes to a more healthy state....i sure hope the new device helps you out. it probably will be odd feelign at first but i'm sure you feel even better once that starts to show positive results. every day your story is so encouraging to me....it is definitely a fresh breeze in the room to hear about your improvements. keep them coming tronni!!

    you're in my prayers...as well as all the rest of you Picc people....stay strong.

    shanna
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    Old 10-06-2005, 09:35 AM   #152
    TeeDee
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    Re: PICC line people

    Thank you, Shanna. Part of what keeps me upbeat and positive is your strength in enduring what you've gone through. Every time I find myself heading toward a pity party I think of you and some of the other strong and struggling people I've come to care for on this board. You're very sweet to be able to offer encouragement to others in spite of your own situation. I so look forward to hearing about good things happening for you.

    God bless you,

    Tronni

     
    Old 10-06-2005, 09:46 AM   #153
    damz68
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    Re: PICC line people

    Hey,
    How bad would it be if I started an infusion without using alcohol wipe? I just injected saline, pre-abx, without first wiping. What can I say my fog has been 8-9 for last seven days.

    I think I herxing at the moment, the last seven days have been hell. All of my symptoms have increased, especially the muscle pain in legs. It feels like the muscle is being twisted, like ringing out a wet towel.

    I hope you are all doing good. Sorry I dont post much here anymore. It seems like every day there are 5 additional post and it makes me more confused and fatigued just to think what I have missed. However, I am a man and only talk when need be!

    Does anyone know how long we have to infuse before we start to feel something positive?

    Derek

     
    Old 10-06-2005, 10:18 AM   #154
    Betterdaysforme
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    Re: PICC line people

    Dear Derek,

    Don't sweat the small stuff I say. I know I had forgotten to alcohol the end of the picc-line once or twice and I am still here to talk about it. I got so I layed everything out in the exact order to be used so I wouldn't forget anything. And there's nothing you can do about it now anyway.

    I know you'll hate me for this but I think it's great you are feeling like crap. Thank goodness you can't reach thru the computer and smack me. Seriously, this sounds like more than the every day feeling bad stuff that is going on. Maybe you are finally having some herxes. Keep track every couple of weeks to see if they diminsh in power. I hope things are going well and the home life has calmed down. You are always in my thoughts.

    Maureen

     
    Old 10-07-2005, 06:25 PM   #155
    Pearlscale
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    Re: PICC line people

    Dr Update
    To Jemsek Clinic today. As some of you know, I was diagnoised Wed (after 3wk of D) with C Diff. Bacterial infection of intestines which started after 3-4 days after Rocephin iv. Today told liver panel very high. (I was not even on antibotics for the last 1 1/2 wk.) They said it was due to the toxins from the c diff. I am back on milk thistle. I am to infuse fluids for the next week and see them again Friday. ( I told them I was going to the beach for the week.) They weren't sure I should go. My whole family is going. My dau is RN and she will be there. She is familiar with Picc and C Diff. I am going. Keep me in your prayers. Still have D. Will be a long 5 hr trip. Will post when I get back. Marsha

     
    Old 10-08-2005, 05:49 AM   #156
    merfy
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    Re: PICC line people

    Quote:
    Originally Posted by GomezNC
    I just had my PICC line put in on Thurs. So far so good. Does anyone have tips on covering the site for showering?
    hi. i've been on the PICC line 3 times already and in my vast experience have determined the best covering for showering to be the Glad Press 'n Seal plastic wrap. you still can't submerge the area in water nor would i let the shower water directly flow onto the site, but the press 'n seal really adheres to your skin and keeps it dry -- and is easy to use (no tape).

     
    Old 10-08-2005, 06:30 AM   #157
    damz68
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    Re: PICC line people

    Quote:
    Originally Posted by Betterdaysforme
    Dear Derek,

    Don't sweat the small stuff I say. I know I had forgotten to alcohol the end of the picc-line once or twice and I am still here to talk about it. I got so I layed everything out in the exact order to be used so I wouldn't forget anything. And there's nothing you can do about it now anyway.

    I know you'll hate me for this but I think it's great you are feeling like crap. Thank goodness you can't reach thru the computer and smack me. Seriously, this sounds like more than the every day feeling bad stuff that is going on. Maybe you are finally having some herxes. Keep track every couple of weeks to see if they diminsh in power. I hope things are going well and the home life has calmed down. You are always in my thoughts.

    Maureen
    Hey Betterdays,
    thanks. I did not sweat it long. I am feeling normal again, bad normal. For us a normal day is still bad and a bad day is horrible. I just wish one symptom would go away for just a day. I would just be thrilled if something as simple as my stuffed ears or nose would just clear up for one day. Who has ever heard of having stuffed up full feeling in ears for 834 days straight. I guess that is asking a lot though cause if my ears and nose were not stuffed than I probally would not be fogged and dizzy. It would be a chain reaction of feel goods.

    Saying you hope I feel bad is the nicest thing anyone has ever said to me. Nothing but hugs for you Maureen.

    Even though you are in the "BIG D" I hope you are pulling for those Astros from H town. Lord knows the Rangers cant get there!

     
    Old 10-08-2005, 06:50 AM   #158
    Roman77
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    Re: PICC line people

    Hi guys and girls...ladies and germs....man i'm silly this morning, don't know why considering the news i have but oh well a girls got to laugh right? right.

    anyway here's my news: my llmd authorizeed an extension of my primaxin iv for another 4 weeks added onto this round of 4 weeks which i am nearing the end of. and then my ins called yesterday, and due to the fact that my llmd dr c told me to go off my iv meds for a few days here and there due to severe herxing and pain over the course of my 2 past rounds of iv, my ins is no longer willing to pay for my meds. they say lymes treatment is ineffective that way. what!!!!

    so i am waiting for a game of phone tag to finish up between my doctors and my ins, in the hopes that they convince them that it is medically effective to treat a lyme's patient in this manner and that people do get well this way. i am so mad that ins companies try to tell doctors how to treat patients. did they go to school for 8 years and start their own clinic and research lymes..no...so why should they tell people how to be taken care of. it's plain stupid. so now i wait...in the meantime i have to drive into town to my doctor to have them change my hickman dressing b/c they have also stopped paying for my home nurse visits. so this all plain sucks. it's so frustrating as after 3 months of iv treatments i am finally beginning to see more and more positive changes, all be it small but still great in the scheme of things. now this. i guess i will just keep plugging on and pray that god will resolve this all and i'll continue to heal when this all settles down. so if you guys can, please keep me in my prayers as there's no way at all that i can continue iv w/o ins coverage...it's ridiculous how much this stuff costs. i can't imagiane going back to orals right now...so now i wait and see what the next days will bring....an end of my iv and my strides at improvement or a repreive and a contiuation of my healing....fingers crossed yall.

    Lymegirl ~ hope we'll still see you on the board and soon be posting good success stories. i wish you the best of luck and fast healing.

    Marsha you will be in my prayers....i sure hope you will be able to have some fun at the beach despite the situations. I will be praying that the extra fluids and milk thistle will lower your liver enzymes and hopefully resolve the C diff infection. Keep us posted when you can.

    Derek...just wanted to say that I've also forgotten the alchol swabs a time or two and i'm still here, so like maureen said "what's done is done" try to not to worry. i think if we did that regularly it would spell trouble but once i doin't think is going to kill us. i actually forgot to flush out my iv for 3 days when i had to be off of my meds. talk about a panic, i thought that it would be all closed up. but luckily it wasn't. we've all been there a time before and been smarter afterwards...now i lay out all my stuff just like maureen said she ended up doing. seems to be a great way to overcome the fog.


    alright yall...off to eat some oatmeal for breakfast...enjoy the weekend if you can...fall is here in MN and the leaves changing are just plain gorgeous.

    shanna
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    Last edited by Roman77; 10-08-2005 at 06:52 AM. Reason: brain fog of course

     
    Old 10-08-2005, 06:52 AM   #159
    gottagetbetter
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    Re: PICC line people

    Damz68 ,

    Have you thought about going to see a chiro or someone that does cranial sacriul (sp)work? My chiro has helped me out with is in a huge way. Maybe another option for ya!!

    ~P

     
    Old 10-08-2005, 07:56 AM   #160
    damz68
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    Re: PICC line people

    Quote:
    Originally Posted by gottagetbetter
    Damz68 ,

    Have you thought about going to see a chiro or someone that does cranial sacriul (sp)work? My chiro has helped me out with is in a huge way. Maybe another option for ya!!

    ~P
    Would love to try it but I am on a FIXED income and I just dont see medicaid accepting a chiro. I think the only reason medicaid accepts Dr. J is because he specializes in AIDS.

     
    Old 10-08-2005, 11:36 AM   #161
    Betterdaysforme
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    Re: PICC line people

    Dear Derek,

    I wonder how many acupuncture treatments it would take to help you unclog. So nice to be talking about this subject concerning somebody's head and not their guts. I had a friend who had lots of allergies and went to an acupuncture doctor and they did acupressure instead and she doesn't have allergies anymore. Check and see if your insurance covers you for some visits.

    I know what you are saying about just 1 day. When I was on the rocephin I strung 3 days of normal walking together and about 12 ours of a non stiff hand. It makes you feel as though you are doing all of this for results.

    I guess I have to say I am now rooting for the White Sox even though they beat my beloved Red Sox. I grew up in Massachusetts and my brother had a chance a million years ago to play on their farm team but got married instead. My family had a lot of good athletes. My father's brother played minor league ball and was quite a pitcher and my 2nd cousin is Pie Traynor who is in the Hall of Fame. He supposedly is the best 3rd baseman that ever played the game. He played for Pittsburgh. I can remember going to his mother's funeral as a kid. I wished I had asked for an autographed ball. Boy I can't even imagine what that would be worth today. He retired I think in 1939. One of my daughter's friends gave her a first release baseball card of him to give to me so that's nice. I do have a soft spot in my heart for Roger Clemens though so either White Sox or Astros would please me. Somebody different for a change.

    Hope today finds you better and in good spirits. I am on my countdown to go and see Dr. Crist. Boy their are tons of papers to fill out and my writing is pretty pitiful since my hands are so stiff. He probably won't be able to read it. I think I will type a general history anyway from day 1 and that should help. I'll keep you posted on how it goes.

    Maureen

     
    Old 10-08-2005, 05:24 PM   #162
    brennd8
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    Re: PICC line people

    Hi all,
    I am now an offical PICC member YEAH !!!!! I have been waiting for this for ever it seems like and it was made offical yesterday.
    Dr Crist and my family Dr are working together and set me up to have the PICC line insertered at the hospital ( my ins insisted) The best news that I have had in since I have been sick though is this. My ins is paying for the IV and home nurse care 100% !!!!!! I was so hyper when I found out I couldn't calm down for about 1 hr then I crashed.
    Anyways -- My veins are to small after about 45 min. of trying the doctor could not get the PICC line inserted and told me that I would have to come back on MOn and have a radiologist try. Well, I pulled out all the stops and begged him to try the other arm and he said how about we jsut put a PORT in and I said alrighty-then!!!!
    My nurse came today and started my first abx of Claforan which I get every 8 hrs and I am very excited.
    Heather

     
    Old 10-09-2005, 05:58 AM   #163
    Betterdaysforme
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    Re: PICC line people

    Dear Heather,

    You are one determined lady. I hope everything was numbed while they were doing this. I think Jon has a port. When I was on the IV I did go to the hospital and a radiologist put it in the picc-line. He was fabulous and I would request him again if I had to do this again.

    You are now an official member of the picc-line club. Of course anybody can participate but now I am sure you will feel more at home discussing your ups and downs with fellow picc-liners. Hopefully there will be only ups.

    Make sure you continue to take the probiotics and do so for a long time after the line is gone. I stopped too soon and had terrible diarrhea. The only time I ever had the problem through all of this. I guess it just takes a long time to straighten out the good bacteria because the IV is so strong. Also be sure to take milk thistle so you don't have any liver problems. I am not sure if what you are on is as hard on the liver as rocephin but better safe than sorry. I was also told at one time that drinking organic lemon juice (probably added to water) would cleanse the liver too.

    I look forward to some good reports from you and lots of progress. As I said to Derek the other day I wish you happy herxing. I know that's terrible to wish somebody feel worse but it is supposed to be a good sign. Hopefully yours will be the normal few days every 4 weeks or so instead of the kind Romans seems to be continuously having.

    I leave to see Dr. Crist in a week. The 6 weeks have gone by pretty quick. I got all my paperwork filled out yesterday (not my best penmanship with my stiff hands) and will start doing temps today. By the way did you fast? How long did the appointment turn out to be? I guess he just had somebody do the testing after the visit with him? I still say that all I plan to do is the Igenex lyme & babs tests and the others later or have my doctor here run them so insurance covers them. I shouldn't have to fast for those but will if need to. I guess I need to reserve a room too. We are going to take it easy going up, about 5 hours a day so it shouldn't be too bad. Not sure yet about the trip home. I wish my daughter would have her baby so we won't feel so guilty taking her dog back before we leave. Maybe this week. We haven't even told her yet we are going because she is kind of a drama queen. Maybe I'll have 2 things to celebrate in 1 week. Take care and keep us posted.

    Maureen

     
    Old 10-09-2005, 08:52 PM   #164
    gyyl
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    PICC line or injection?

    I have the option of having a PICC line or getting a daily injection of rocephin. I'm a bit squeamish about the picc line. having that tube hanging out of my arm (what if someone pulls it!!) and the tube running up to your heart! Yet, it would be more convienient than shlepping to my doctor's every day.

    So how easy is it to maintain the picc line? How long does it take to maintain and give yourself your treatment? Can you do excercise with it (where you sweat)?

    I'm trying to decide what to go with. What do you guys think?

     
    Old 10-10-2005, 05:27 AM   #165
    Betterdaysforme
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    Re: PICC line people

    Dear gyyl,

    I just wrote to you to check out this site. Glad you found it. To me the picc-line is the easiest route to go. No upset stomach (for me anyway) with the meds and it only takes 1/2 hour to administer. All bloodwork is done thru the line and you only see the doctor or nurse practitioner once a week to clean the insertion site. The thought of having something going to my heart and dangling kind of freaked me and I almost didn't go thru with it but it was a breeze. I always wore an elasticized sleeve to hold the line extension in place so there was no problem sleeping which worried me the most. There is a cover for showering you can buy or a lot of people seem to be using glad press and seal. the IV it is quite expensive depending on your insurance but well worth it. If you can exercise you are doing better than most of us and I applaud you but don't overdue it because you will pay for it later. Let us know what you decide and happy healing.

    Maureen

     
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