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    Old 09-10-2005, 03:44 PM   #106
    cjFTWORTH
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    Re: PICC line people

    Lesley,
    again, thanks so much for all the info and your time. blessings to you and your family and hopes that daughter will respond great to abx. cj

     
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    Old 09-12-2005, 06:17 AM   #107
    Roman77
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    Re: PICC line people

    hey all...how is this monday for you? wish i could say "great" for mine, but this is just the first day out of bed for me since starting my new iv primaxin on thursday. i feel like i am going to just die. i am again herxing constantly. i spent about an hour yesterday on the phone with my b/f just falling to pieces. this is just so hard to deal wiht. i hate having to feel this bad to get better. my pain meds are not helping and neither is taking a break from the meds. dr c told me to just take it 1 x day instead of 3 and i am still taking a beating. i am so frustrated. everything that could hurt, does. my hands/feet are swollen and bruised, not to mention that hearing a pin drop across the room just makes me wanna scream hence ear plugs 24/7. arrrgggh. i just want this pain to be done and to have my life back already.

    sorry to be sooo mopey and down, but it's beena rough few days. hope things are better with you all.
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    Old 09-13-2005, 06:29 AM   #108
    Roman77
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    Re: PICC line people

    lesley...thank you for the encouragement and support. i definitely needed a hug as it were to help me through the day. am feeling a little stronger...very little, but it is a step in the right direction even though i am still in bed and hurting most of the time.

    i have figured out one reason i am so sad this ast week...the leaves are falling and it's getting cooler, so fall is here and im not well. first i was hoping it was this spring, then this fall...all it is doing is making me sad, not helping. so i have decided to not worry now bout how long it takes for me to get well...i am putting it in gods hands and letting it go, that's where it should have been all along. i had moved my "date" to x-mas, but am throwing that out as well....i'll be better when i'm better, that's all i can do.

    hope you are all fairing better...lesley how's sara handling school? and how was her scan and appt? has her stomach pain lessened? you are both in my paryers.
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    Old 09-13-2005, 06:49 AM   #109
    cjFTWORTH
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    Re: PICC line people

    romans,

    sorry you are still struggling so but glad you are beginning to see glimpses of
    relief.

    i believe your attitude is right on about dates at this point... one day at a time...

    and for whatever it is worth, i'm going to share some neat things that have been going on in my life...

    about 5 -6 weeks ago, still low spiritually low, I was crying out to god, asking him why i was so far away from him... i am in a bible study and so some of this was being recorded there; sometimes i'd be walking my dog and start to sing a praise song and the next thing i knew, i was worrying about lyme, or i'd be trying to pray and off on a rabbit trail about 'how were we ever going to get to mexico...'

    well, on one of the bible study days, god just started breaking thru. he said to let go of the health issues, the desires about mexico, and to just worhip him... and i was hearing this with such a peace, like i was already letting go, that i'd had my breakthrough. that all my control had been the issue... i was so busy trying to make god fit in to my plan that i had no time to just 'be' with him.

    the next few days were better but what is really wild and sweet is that i went to some friends' house on the following sunday night to hear a man coming in from california talk about revival... he got there very late, spoke from the heart, then went around and spoke to each of us individually. some he spoke to about what god was going to be doing through them in their workplaces, their families, all unique. When he came to me, he said something like, 'so what is this about your heart... do not worry, god knows all about your situation...'

    i just started crying. he didn't have to do that... but he did. to tell me, 'yes carol, i do know you intimately, every detail that is going on in your life, what worries you most... and i am in control...'

    a friend of mine wrote down most of what he said and he said that the heart stuff won't last much longer. later, the guy said he'd be back in area in december and wanted to hear how i was doing... anyway, very sweet. and just a reminder to you that we are not in control, god is. and that although i do get angry at times, wonder WHY, still get scared, i'm better off just worshipping him, and letting go... to the best of my ability. my gift to you. cj

     
    Old 09-13-2005, 06:51 AM   #110
    Betterdaysforme
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    Re: PICC line people

    Dear Romans,

    I know what you mean about a date to start feeling better. It will be 5 years this Christmas for me and I am tired of saying "when". I now just want to be surprised.

    Being a crafter I have always decorated a lot. I think it started because we were so far from home and no relatives to share it with. I put greenery around every doorway downstairs and each was decorated in a theme. I have way too many decorations but love them no matter how long it took to put up and take down. Little by little less and less goes up. Last year I didn't even put a tree up. I have two of those tall thin artifical trees you get at hobby lobby and one is full of dreamsicles and one I decorated with grapevine wreaths, birds nests, birds, berries and lights. I stood them next to each other in the den and that was it. I was looking forward to this year but unless the kids decide to decorate for me it will be the same. Of course I am not sure I trust them to handle my stuff like I do. Maybe next year. When I can I know I will appreciate it more. I have a friend who's daughter brought her new husband over a few years ago and Tim said I decorate more than Santa. I do! We just all have our little things we look forward to being able to do again.

    I am glad you are seeing some baby steps, that's a beginning. Keep it up.

    Maureen

     
    Old 09-13-2005, 04:28 PM   #111
    Roman77
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    Re: PICC line people

    CJ and Maureen ~ thanks so much for your kind words and stories. they helped lift my spirits a bit and take a step back to take a breath. gotta remember to breathe sometimes. rembere to breathe and pray....the only really important things these days i guess.

    gotta say i have a lot to give over to god today...since starting this primaxin my neuro suff is acting up bad, incresign twitches, spasms, hard to walk as my R leg is goning numb and weak, and am back to stuttering constantly and "playing at being dyslexic" when tpingy and riting, not too mention the brain fog has descended in force not seen en months, and patience is sooo out the window...definitely stirring up stuff with this primaxin. scary ubt hopefully killing tons of my resident glacier of spryochetes. just goota plug away and cfous on today and this moment and thank god i have the blessings i do have in my life.

    off to see the cod tomorrow, hopefully he can help me with these herxes and my jaw issues.

    sending blessings to you all.

    shanna
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    Old 09-15-2005, 12:31 PM   #112
    Roman77
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    Re: PICC line people

    lesley ~ just checking in to see how sara is fairing with school, her stomach pain, and the ivs? oh and any word on your own test results? haven't heard from ya in a bit and hope she and you are alright. let us know when ya can.

    teedee ~ how is the iv going? more progress yet? are you all through with the 1st round yet? any words on next step? fingers crossed for ya.

    derek ~ how is the zithro workign for ya? hope you're ssing good things since the first round didn't do much accordig to your last post....hope to hear from ya soon.

    gomez ~ any progress at your end? just checking.

    lymegirl ~ did ya figure out a better way to adapt the iv to the shower? and have you seen anything positive yet with your iv? i know you said in your earlier post you hadn't seen much happen, hoping you've seen some herxing or improvements.

    well i guess this was kind of a roll call gang...sorry if i left anyone out blame it on the brain fog cuz i treid to remember everyone....but no mater what i am just hoping some of you are seeing signs of good things, am excited to hear when they happen, and keeping you all in my prayers.

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

    Last edited by Roman77; 09-15-2005 at 12:38 PM.

     
    Old 09-15-2005, 02:30 PM   #113
    Lesley1954
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    Re: PICC line people

    Hi Shanna,
    Thanks for checking in with everyone. I've been wondering how everyone is doing as well. How are you? Great news on your disability insurance.

    Sara's feeling better, although still complaining about her stomach hurting. I can't remember what I posted last, but her gall bladder scan was normal. Still, the doctor didn't want to take any chances given that the pain was in her gall bladder area so he switched her to Claforan. Now, we're trying to figure out how to give it every 8 hours and make sure she's getting enough sleep. (I'd be interested in hearing from anyone else who's taken Claforan in terms of how much leeway you thought you had with dosing schedule.) It's going to have an impact on activities, especially any after school activities.

    Hope the other PICC-line folks check in as well. Take care,
    Lesley

     
    Old 09-16-2005, 04:57 AM   #114
    Roman77
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    Re: PICC line people

    hi lesley....i'm alive that's about all i can say. have had pretty bad herxes this last week since starting the primaxin, and my heart is really acting up plus my neuro stuff has gone haywire. so i am on a break from the meds for a day or 2 to give my body time to rest and cleanse before i go back on.

    but i am very glad to hear that sara's doing ok and her scan was normal. i'm sure you were both worried. hopefully the switch to a new med can help with some of the pain. i can definitely relate with her 8 hour dosing schedule, that's how ften i have to take my primaxin. although i can't tolerate it that often yet, i am able to take it 2 x day now. i tried for the 1st 2 days to do 3 times a day and was just in too much pain to continue. but to my beleif my nurse asked me to take it at 7 am, 3 pm, and 10 pm...and that way there's not much distance, only an hour from 6am to 7am between early morning dose and my late night one. i think the general idea is to keep a steady level dose in the body at all times, so the more evenly spaced the better i think. either way though it's a challenge to fit them all in. but i do hope some of this helps you out.

    tell sara i pray for her often and think she's such a trooper to be able to handle school depsite her lyme. go sara! i know how hard it is first hand to do that and she is very lucky to have such a great mom in you to get her through this.

    take care gang...
    shanna
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    Old 09-16-2005, 06:14 AM   #115
    damz68
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    Re: PICC line people

    Hey Romans and everyone,

    I started The IV Zith last friday and yesterday added clindomycin IV twice a day and mepron twice a day. Nothing, no herx or anything out of the ordinary. I am really starting to get discouraged again. I also got word that my medicaid was going to be droped. My wife makes to much. The real kicker is that we are basiclly seperated and I am just a day care for are kids. Because we are not divorced I dont qualify. She still lives check to check so there is no chance for us to afford a divorce. I am also still awaiting disability, I have had a lawyer for six months and still nothing. I hate to say this but Katrina may have just ended my chance for disability. I am one step away from being homeless because of whatever it is I have.

    Is anyone else having problems like this that may have some tips on how to deal with it. Before I was ill I could deal with anything. If I go to work I lose any chance at disability and ever getting fixed. If I dont go to work than I have to stay with my wife who has been flirting with a coworker, she said things to him that she has never said to me. There is no way I could do what I was doing prior to illness. You have to be clear headed and strong to do electrical work. Also I have no one to keep my kids so when I make that trip to charlotte every three weeks my so called wife has to take off from work to keep the kids. She hates taking off work. This kills any chance of me from seeing any other Dr's, and believe me I need to see a shrink.

    What a nightmare! Tips would be appreaciated.

    Sorry for being a buzz kill.

    Derek

     
    Old 09-16-2005, 06:25 AM   #116
    Betterdaysforme
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    Re: PICC line people

    Dear Derek,

    I was so afraid you were going thru this. I am so sorry.

    If you think the marriage is truly over then maybe you ought to bite the bullet and be done with it. That way you can still stay on the medicaid and get well. Don't forget that samaya said it took her 6 months on IV. I can honestly say that I didn't really herx the 9 weeks I was on it. What we thought was a herx finally was really my liver acting up. TeeDee said she hasn't really herxed either except when she overdid it. You can't compare yourself to Romans, she is herxing for everybody.

    It will get better but believe me the added stress with the wife is not helping. TThat may be what is keeping you from getting better. I am convinced mine came to the forefront because of stress. You can still watch your kids if you are divorced. It is time to think about Derek now so you can get better and get on with your life. Your kids need you.

    By the way I can't get used to the new name. I wondered what it signified and I think I know now. Hang in there.

    BDFM (Maureen)

     
    Old 09-16-2005, 07:22 AM   #117
    Roman77
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    Re: PICC line people

    Derek...I am really sorry to hear about this whole situation you are in. It is hard enough to be so sick, but to have all of those worries and sort of catch 22s over your head as well has got to be so overwhelming. There is not much I can say that will help but I can tell you taht I will pray for you right now and in the days to come asking God to open and show you a door that will allow you to become well, keep your medicaid, keep your disability as an option, and somehow find peace within yourself to help you deal with the issues affecting your marriage. There is hope but some days it is hard to find it and keep it...we are all there with you. Don't feel like a "buzz kill", this is what we are all here for...to get each other through these rough spots and hopefully to a place where we can regain our lives again. My heart goes out to you Derek.

    Shanna
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    Old 09-16-2005, 07:29 AM   #118
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    Re: PICC line people

    Hey Betterdays,
    Thanks. There is no way we can afford a divorse but would I not qualify with a seperation. How does a seperation work and what does it cost? Besides she does not want a divorse she claims they all talk that way to one another and I am being paranoid. Maybe I am paranoid but I just could not speak that way to another woman with out sleeping with her.

    What hurts worse is I have A mother, father, 3 brothers and a sister that have not said anything positive to me in the two years I have been ill. They look at me like I am just being lazy and wanting a handout. I could have easily been dx'ed with MS, if so they would have held out there hand. You dont get the same reaction when you have CFIDS and then you see a LYME Dr. who says you have lyme. Even though both CFIDS and lyme are just as debilataing as MS.

    My kids need me? Ya but they walk all over me. They know all my weaknesses and take advantage. If I got my disability today I would probally pack my stuff and hid to Charleston tonight. As stupid as it sounds I could sleep in my car or a tent. I know of a real nice campground near the ocean that has showers and power for my laptop. I doubt I would call anyone for several months. I know it sounds selfesh and juvinile but I am just that upset with everyone I know. I really dont think anyone would miss me.

    Damz stands for the first letter in the names of wife in kids. Funny it worked out that way. Here latly it has stood for that dam zithromax!

     
    Old 09-16-2005, 07:51 AM   #119
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    Re: PICC line people

    Thanks for the kind words Romans. I do feel like I am whining but hey that is why I am here. I can whine to all of you because we all have this mess in our lives. I just really want you all to know that as bad as it may get I will never be suicidal. All I need is to get outdoors and I am happy. I know it sounds corny but it is true.

    The other day I flipped over a log and found a foot long tiger salamander under it. I swear it was like taking a pain pill. However the next day I suffered a little more due to the mile long walk and flipping logs.

     
    Old 09-16-2005, 08:00 AM   #120
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    Re: PICC line people

    derek....im so happy that you can even go outside and see a awesome salamander like that! i am looking forward to the day when i will be able to manage a mile long walk, let alone a 1/4....someday! glad to hear that the outdoors for you is so relaxing and theraputic, me as well...so it's not corny. everyone has there little things that make this stuff livable and i'm glad you have something.

    just keep remembering that salamander and looking for more along the way....
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