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    Old 10-10-2005, 08:30 AM   #166
    TeeDee
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    Re: PICC line people

    Hi GYYL,

    Maureen gave great advice (she always does ) and I second her motion...go for the PICC line if you're able to. I was a wreck about doing it but mine's been in place for over ten weeks now and it's been a breeze. Come back to this board whenever you have concerns or questions and somebody will provide the answers you're looking for.

    Good luck and let us know what you decide.

    Tronni

    Last edited by TeeDee; 10-10-2005 at 08:32 AM.

     
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    Old 10-10-2005, 09:05 AM   #167
    Roman77
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    Re: PICC line people

    Hi again gyyl and brennd...welcome to the thread, glad you both found it!

    brennd...glad the procedure went well for you, you're off to a great start. keep us posted on how things go for you. withing the first houjrs of taking my first dose of rocephin i was feeling awful and herxing, so i know it was making a difference for me...despite it showing an effect so slowly in the long term. i can't remember if you said you're going to be taking rocephin or not, but that's what most people seem to start out on. so good luck...i hope it does the trick ofr you.

    gyyl....i was really nervous too when i was going to get my hickman iv put in. i had had a picc line as a kid when i fought lymes first and it went ok, despite some reeactions to tapes and bandages. but this time around the docs put in a central line above my heart instead of gaoing the arm route. it's worked pretty well for me, no problems yet...knock on wood. so i would imagine your procedure would go as smoothly as all the ret of ours as well...let us know what you decide. and i'm glad you even have the strength to exercise til you sweat, that's amazing. i am just getting strong enough to get on the eliptical for 5 minutes a day at the lowest resisitance, and this is coming from a former marathon runner a year later. yuck. but if you can exercise go for it, i can't imagine the picc line getting in the way at all. just be careful and it should be alright.

    an update on me for you guys...as i posted last friday my ins has pulled my future round of iv out of the water and i'm sitting herer waiting for some news. for now i'm in limbo, not able to take any medicine until i hear from them hopefully saying they'll cover the next round...nbr 3. i'll let you all know when and if i hear anything...for now i feel like i am losing all positive ground i've fought so hard for. very frustrating.

    hope you all had a better weekend then i...was herxing preetty badly after my first dose of primaxin in 4 days (which ironically turns out to be my last for now)....dr c had me off of it again due to a really bad herx. so i was in bed and so sick i just wished i could switch out all my blood with someone else, just felt soooo toxic. but am feeling a little stronger today so that's good i guess. don't know what else to do but keep up with all the dtox stuff i'm doing and wait for my body to catch up with clearing out all this die off...frutstrating in itself.

    well i'm pretty tired yall...so off to take a mid morning nap....wishing you all a good day.

    shanna
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    Old 10-10-2005, 07:31 PM   #168
    brennd8
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    Re: PICC line people

    Hi all
    well i have been on the CLAFORAN for 3 days now and have felt ok so i don't know if it is doing anything. I am still hurting like usual and confused and i had a seizure this afternoon. so i don't know if you would consider the seizxure a little herx or not since i was "due" for one or not. I guess i just have lots of questions but not many answers.
    Romans/shanna
    I am so sorry about your ins. i know what you are going thru and am crying for you. We have had to cut cost so much wth this sickness because of ins and no money and it has hurt me so much more. I am praying that the ins. people will come around for you and that you can get a break from the herx constantly.
    gyyl,
    I would recommend the PICC because it would be a pain to have to go to teh docs every day feeling as bad as we do ( even feeling good it would stink ) Just be careful to keep it dry and clean. I had two and they both became infected within 2 weeks of being put in. this was last year and i wasn't on abx at the time because we didn't know i had lymes. I was being treated with the natural thing called "glutathione". I am not sure if they are prone to infection with abx or not, but be careful.
    I still think the PORT a CATH is the best. Mine is on the left side right above my heart. It was just put in on Friday and still hurts like @@--**9(( oh well !! it will get better. it is cool that i don't have to be poked anymore for bloodwork.
    Maureen,
    I will talk to you at the main board...
    Talk at you all later,

     
    Old 10-10-2005, 09:47 PM   #169
    gyyl
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    Re: PICC line people

    thanks, maureen, tronni, shanna, brend, for your advice. I'm still undecided. lol. My worry about exercising is that the sweat will wet the picc line. I guess it's very bad to wet it because of infections, but if I'm sweating I don't see how that can be avoided. And I tend to sweat a lot lol.

    You think sweat could be a problem? If I get the thing in and i find i can't really workout that will be bad, because i think the exercise helps more than anything. I don't have much fatigue, just a lot of pain and i think getting the endorphines flowing helps cut the pain. I also wonder if the increased blood pressure could screw up the tube somehow.

    You guys all have such positive attitudes and that's great! I think that's the most important thing. Sometimes i can get very negative and that doesn't help. Take care everyone.

     
    Old 10-11-2005, 07:08 PM   #170
    brennd8
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    Re: PICC line people

    Hi Everyone,
    Well I started my IV Claforan on Saturday and yeasterday afternoon's dose in the middle of it brought on a seizure, which I slept for 3 hrs after it was done. Another thing is that after each dose I notice that on my left side all my joints feel like they are swollen especially my ankle. anyways last night's dose afterwards i didn't have a seizure but had white lights flahsing in my head when i would close my eyes and it felt like a siren was whirling aroung in my head. it felt awful. I still wasn't sure if it was a herzx or not. But today when my nurse came i told her about it and when she gave me me dose sure enough i had a nother seizure in the middle of it. falling alseep afterwards again. My husband called Dr Crist and he said to pull me off the IV for 4 days and then put me back on again.
    I am pretty bummed about this news as well as hurting pretty bad from these seizures and the swelling joints and headaches. I am also reacting to the tape and that isn't feeling very good .
    Sorry that I am complaining. It was just a bad and disapointing couple of days.
    bye...

     
    Old 10-12-2005, 03:28 PM   #171
    Roman77
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    Re: PICC line people

    heather...can't type much today, pretty sick. but just wanted to say you'll be in my prayers and that i react badly to tape and bandages as well...you might wanna try something called sorbaview...that's what my nurses had to use on my hickman. they should have something equal to that for your port. worth a shot i suppose. i also know that the only tape i don't react to is silk tape. hope this might help ya out a little. it's a rough road we travel...keep on trucking.

    shanna
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    Old 10-14-2005, 05:35 PM   #172
    Pearlscale
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    Re: PICC line people

    To update all.
    I did make the beach trip. A very miserable, sick, bathroom filled week. 3 hrs of IV fluids each day. Back early to keep my Jemsek appt. Bad news there. Im very depressed. Romans you can understand. One step forward 10 back. In a nutshell, have to see a GI dr for C Diff. Liver functions extremely high probably from C Diff toxins (im on milk thistle) Protocol on hold. Told when and If I do get back on Iv for lyme, Bab, mycoplasma will probably on be a couple days a week and the rest of the week trying to get C Diff. Jemsek said he had never seen c diff this early in protocol and the pa said this was her 2nd time ever. Cant handle alot more, guys pray for me. I told them today, im at the bottom of the hill and quicksand is trying pull me under. Marsha

     
    Old 10-18-2005, 10:21 AM   #173
    Roman77
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    Re: PICC line people

    hi marsha and the rest of yall...sounds like not much good news is in the loop for us lately. been keeping you all in my prayers when i can.

    not good news here for me. been herxing and seeming like taking about 30 steps back over the past 2 1/2 weeks since my insurance pulled the rug out from under me for the iv. have no way to pay for the 1000 a week to continue w/o ins. so no meds at all and feel like i am falling fast. so far i have had to learn how to change my own dressing since i can't handle the drive to town to have a nurse change it and the ins pulled paying for my nursing care to keep my iv safe. i keep praying it won't get infected. meanwhile dr c and my other docs have been talking to my ins trying to get this all straightend out but looks like it is a lost cause. i think they will be pulling my hickman next week probably. my ins says that "iv meds for longer than 4 weeks show no increase in effectiveness in treating lymes but do increase health risks...." ...what a bunch of bull. i hate that they are telling my docs who know what the heck is going on how to do their job! so i guess i am through with iv even though i am NO where near cured by a very very long shot. guess back to orals and i'm not even sure if my ins will pay for them. that's a whole other battle, as they seem to think that after 2, 4 and 6 weeks rounds of rocephin and primaxin...which i was pulsed on cuz i couldn't handle it at all...i should be cured according to them. yeah right. so am very sad, frustrated, and upset.

    anyway very tired now and heading for a nap but just had to check in with you all since i haven't been up to checking the board much over the past few weeks...hope some of you are seeing good things continue to happen. good news breeds hope and we all can use more of that.

    shanna
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    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 10-18-2005, 10:35 AM   #174
    Pearlscale
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    Re: PICC line people

    Shanna,
    Heres a Hug!! Sounds like you need one. Don't give up. If I had a extra couple thousand, I would send it to you. I don't but God is still in control.

    Let me tell you what happened Sun. I wass really down. (He also knew what was to happen to me yesterday, read post on shakes, temp ect) so he told me He is in control.

    Before the worship service that I didn't feel like going to, I picked up my bible and read about Moses and the children of ISreal. How he went up to get the 10 commandments and the people gave up and made a golden calf and worshipped it. Then I get to the service and the whole service was exactly what I had just read. He showed me (and you too) we cannot give up. He is in control.

    Im not sure whats for you next, but hang in there you have my prayers.

    Marsha

    Last edited by Pearlscale; 10-18-2005 at 10:38 AM.

     
    Old 10-19-2005, 09:06 AM   #175
    TeeDee
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    Re: PICC line people

    Hello Everybody,

    I'm on a terrible guilt trip about not keeping up with the posts and sending my own to encourage everyone going through hardships. I have, however, been diligent in thinking about all of you and keeping you in my prayers.

    My husband went on a duck-hunting weekend with a group of pals he hasn't been with for several years. He wasn't sure he was going to go (part of his own guilt trip about leaving me on my own) but I insisted he go. I told him it was FOR me since his sanity and happiness are a big part of what keeps me sane and happy. So he went and had a great time and while he was gone I cleaned and organized my house, which made me very happy. But, of course, I overdid it and after several days of feeling really good, I sort of crashed and have been trying to recover for the last three days. I keep learning my limits and then keep going over them. But I'm feeling better today and my infusions are going well. I'm still having mobility troubles but can live with that and keep hoping they'll eventually get better.

    Shanna and Marsha, I'm stepping up the prayers for you! I'm also keeping everbody else in my thoughts and prayers. I'll start expending less energy on silly tasks like housework and start following the board chatter more.

    My best to all,
    Tronni

     
    Old 10-19-2005, 09:23 AM   #176
    cjFTWORTH
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    Re: PICC line people

    hi all,

    sorry to hear of so many troubles... i seldom venture on this thread as i'm not an iv user. but was concerned about romans... and now i see i had good reason to be!!

    Shanna, so, so, sad for you, disappointed... standing in the gap, praying that whatever you are SUPPOSED to receive, you will get IN FULL MEASURE! if it is to have insurance step back up to the plate with iv treatment, so be it... if god has something else for you, then BRING IT ON! what does crist's office say is the next step? i may have missed it...

    I did write you a thread, now a second pager about some crist stuff and when you didn't respond, i decided i needed to come hunt you down... i know that your journey is a very hard one... reminds me of job often... and i really don't get it, why some folks have to be SO SICK when they are being so diligent at getting well...

    like i said, i don't venture on this thread often so not sure what the latest was with iv... or where you are currently out.. you might want to post on the main board and catch everyone up... love you much, carol

     
    Old 10-20-2005, 09:20 AM   #177
    Roman77
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    Re: PICC line people

    thx everyone...and thx cj for the idea...just posted an update for the rest of the board. meant to the other day but was just too exhausted. take care all...gotta go rest.

    shanna
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    Old 10-21-2005, 07:57 AM   #178
    TamKS
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    Re: PICC line people

    Hello All,
    I am new at posting on the board, but have been reading here for a while. I have found it to be very useful. I finally decided to figure out how to join and post and here I am ...finallly....

    A little history... I have been sick for 4 years now... finally diagnosed with Lymes after many other diagnosises.
    I am posting here beacause I have had a PICC line for almost 5 months. I have had some very good days since starting on the Rocephin, but still feeling like crap the majority of the time. I have also just started minocyline (200 mg. daily) again. (did this before the Picc).
    My main symptoms are joint pain (mostly in hips and knees and hands), headaches and major fatigue.

    I am wondering if anyone is on Diflucan. I have seen some interesting info. on this and read that some with Chronic Lyme have had some amazing results. My doc has mentioned trying it later on ....

    Thanks, TamKS

     
    Old 10-21-2005, 08:01 AM   #179
    Pearlscale
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    Re: PICC line people

    Welcome to the board. TamKS
    Don't have the energy or mind to say more. But glad you are here, so so sorry you have this horrid lyme. Marsha

     
    Old 10-21-2005, 08:23 AM   #180
    TamKS
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    Re: PICC line people

    Thanks...it is good to be here(sort of?) I think it is just good to know that you are not the only one (which sometimes it feels like) who feels so badly. Before getting sick I was very healthy and took my health for granted. It just amazes me that one can get sick so fast and stay sick for so long with lymes. Hearing other peoples stories somehow validates me, i guess. I don't feel crazy...i know that I have a "real" disease. So many doctors who I have seen over the years have basically said that they didn't find anything wrong with me and that maybe a shrink would help. How absurd!!

    Wouldn't it be wonderful if someone came up with a definate cure for lymes. I pray that someday someone will, but until then we will all just keep surviving and doing the best that we can.

     
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