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    Old 08-10-2005, 06:00 PM   #16
    TeeDee
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    Re: PICC line people

    Hi All,

    I had a good day today, other than still fighting the gut issues. I talked to Dr. H. night before last and he told me to call a nutritionist who's a patient of his. I called her yesterday and ordered some more probiotics that she thinks will clear everything up, once and for all. Dr. H. wanted me to try that instead of another round of Diflucan so I don't mess with my liver. Makes sense to me.

    The infusions are going well and I do think I'm starting to improve a bit. My balance, fatigue and walking have been pretty bad since starting the Rocephin and I figure it's been a Herx so I consider that a positive thing.

    Let's hear some good news from the rest of the PICC-ers. We'll make progress as a group!

    Best to everyone,

    TeeDee

     
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    Old 08-12-2005, 07:49 AM   #17
    Roman77
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    Re: PICC line people

    Hi guys...just checking in again. Back on the rocephin since Tuesday and back to feeling super nauseous, dizzy, and feeling overall crappy and in bed with ice packs again. Joints are starting to swell up again and have been the "lobster" a few times now as well, just hoping that I can stay on the rocephin a few more days before taking another break. Will keep ya posted. Only thing I can see improving so far is that my time spent asleep is increasing...instead of 2-3 hours in a row of fitful sleep I am now sleeping pretty soundly for that time period and guess that's something good since I haven't slept normally for over a year now. Maybe I'll actually sleep through a whole night sometime in the next few weeks...that would be something!

    Bothrops ~ super glad to hear that you're not fighting the tape issue any longer, I know how much it hurts and aggravates to have the rash and itchies when you're fighting the huger issue.

    TeeDee ~ how are the extra probiotics doing? have they helped your problem? hope so, don't need to add on to your battle in any extra way, shape, or form. and excited to hear that your feeling some improvements, very encouraging to hear.

    GomezNC ~ haven't heard from ya lately...how are you doing? wishing you the best. let us know how you are if you feel up to it.

    Alright troop....hope you all have a good weekend.
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    Old 08-13-2005, 05:25 AM   #18
    Bothrops
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    Re: PICC line people

    I just got uped to 3 infusions a day. One rocephin and two climdomycin. What are you all taking? How much acidophilus should I take a day?

    Derek

     
    Old 08-13-2005, 08:05 AM   #19
    TeeDee
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    Re: PICC line people

    Hi Derek,

    How many mgs. of Rocephin are in your infusions? I'm on just two mgs. five days a week and the diarrhea and yeast infection are just easing up now, since starting to take "Florastor", an extra-strength intestinal track protector. It's 5 times stronger than Acidophilus and is the only thing that's had a positive effect on my rotten gut symptoms.

    Hope you do well with the new regimen. Keep us informed!

    TeeDee

     
    Old 08-13-2005, 12:22 PM   #20
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    Re: PICC line people

    Hi guys,

    I am so glad you can banter back and forth about your reactions. I'll be glad when Romans can say some good stuff is going on but at least she is sleeping some now.

    Derek, How much of each med are you taking? I have never heard of different IVs at the same time but maybe this will do the trick. Wouldn't that be nice?

    TeeDee, Are you sure you aren't on 2 gr not mg? I may be mistaken but I swear I was on 2 gr. So glad your digestive tract is clearing up. Mine got really messed up this week and don't know if it was the samento or the new kind of acidophilus hubby bought. I stopped the samento and am starting to feel slightly better because he went and searched out the bio beads for me. I will probably start back on the samento tomorrow. If that is what was causing the problem it might have been a herx. Good news I guess. The receptionist at the homeopathic's office told me that he got in some lyme homeopathic meds so I am anxious to find out what it is. I didn't even know he was doing this. He is determined to get rid of this. It has become his passion.

    You guys keep up the conversations. I read them and smile and wish I was a part of it.
    BDFM

     
    Old 08-13-2005, 02:31 PM   #21
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    Re: PICC line people

    Hi BDFM,

    Thank you for keeping an eye on us, especially on me! I AM on 2 Gms. of Rocephin - a little difference between Gms. and mgs.! And as far as you being part of our little group, I for one, consider you one of the founders! You always have words of wisdom and encouragement and it wouldn't be the same here without you.

    I hope the bio beads do the trick for you and that the Samento doesn't give you a hard time. How great that you've found a passionate and dedicated homeopath! Once he turns you onto some of his magic potions I know you'll share and I look forward to that. Won't it be awesome when us "veterans" relate our experiences in healing and getting well to others to follow?

    Keep in touch, all!

    TeeDee

     
    Old 08-13-2005, 02:47 PM   #22
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    Re: PICC line people

    Hi guys... I am off of the Rocephin again as of today, my body can't handle it. Pain meds and ice packs aren't helping at this point so I need some relief. So I will be going into to see my local doctor on Monday or Tuesday to get some more pain meds, plus discuss whether my dosing schedule should be changed to some kind of pulse therapy. Also I am concerned about my jaw...it's popping out of joint everytime I open my mouth. It's really quite annoying and painful. So hopefully I'll have some answers afterwards, maybe even some positive news. That would be wonderful.

    Bothrops ~ really hope your new infusions will do the trick. What is the climdomycin for? a co-infection or for the lyme? keep us posted on how the change goes for you. also I am taking 2 grams of Rocephin since you asked about it.

    TeeDee ~ just was wondering where you got the florastor from? can I find it at walgreens or a pharmacy? I think my stuff isn't doing the trick anylonger either, as I've been fighting the whole yi and gut issues myself. If it helped you maybe it can help me too.

    BDFM ~ Thanks for checking in on us. I hope your homeopath beads will help you too. I keep you in my prayers that the samento will start helping you soon, I know you've been taking it for a bit now. Hopefully what you went through was a herx, that would be a positive step for sure.
    __________________
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    Old 08-13-2005, 05:05 PM   #23
    TeeDee
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    Re: PICC line people

    Hi Romans,

    The Florastor is an over-the-counter thing and I got it from a nutritionist who my LLMD told me about. You can just do an online search for it. I swear by the stuff - after just a couple of days of being on it, the diarrhea has gone as well as the yeast problem. I hope it works for you, also!

    You're still in my prayers and I hope real soon we'll hear that you're feeling better!

    TeeDee

     
    Old 08-14-2005, 04:41 PM   #24
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    Re: PICC line people

    Hi PICC line people,
    My 14-year-old daughter is scheduled to get a PICC line on Tuesday and start Rocephin the same day. She was diagnosed in late July, but has been sick for at least a year and has neurological symptoms.

    The question on my mind today is whether I should ask the doctor in advance to prescribe pain relievers for Tuesday after the line goes in. Did any of you need more than o-t-c pain relievers? From reading this thread, it sounds like the procedure was pretty easy for most of you so I'm guessing not. Yet elsewhere, I believe I read about an adolescent with a PICC line who needed a day or two of percocet to get through the early discomfort. I'd rather be prepared and not use it than have to call the doctor and make a run the pharmacy if she's in a lot of discomfort.

    Another question. Do any of you use co-flex to wrap your IV? Are you able to buy it at a local med supply store or do you have to order it on line? We found a site on line and she picked out a half dozen colors she liked (fashion is very important at this age!), but when I realized the postage was going to cost more than the co-flex I asked her to wait to see if we could buy it locally. (We live in the Northern Virginia suburbs of Wash, DC)

    Thanks for any thoughts you have on my two questions.
    Lesley

     
    Old 08-15-2005, 09:11 AM   #25
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    Re: PICC line people

    Good morning all....talked with my doc today and my rocephin is now scheduled for 4 days on and 3 days off. Maybe this will help me bring down my pain level from an 8 or 9 constantly to a more bearable 4 or 5...wouldn't that be grand! So today is my last day off then I start back up tomorrow. I'm anxious to see if the new sched will start providing some relief and maybe I'll see some progress.

    TeeDee ~ thanks for the info on the Florastor, I'll try to have my mom look for it when she goes to town today. Hope you are still plugging along and maybe strating to see some positive results!

    Lesley1954....welcome to the board. Sorry to hear about your daughter, but I am very glad to hear that she is being treated and getting her PICC line soon. I have a hickman iv in my chest but I had a PICC line as a teenager when I first had lymes, it didn't really hurt too much to begin with. Both then and now though it's the herxes that I need the pain meds for. So hopefully she will be okay with just the otc stuff. I have never heard of that co-flex, so can't help ya there. Maybe the others will have an idea. Hopefully the procedure will go smoothly for your daughter, please keep us posted on her progress. We're glad to have you and her here! Hopefully we can all get well together.
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    Old 08-15-2005, 11:11 AM   #26
    Bothrops
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    Re: PICC line people

    Hey everyone,
    I am on 2 grams of rocephin and 1 gram of clindomycin. I am not sure what the clindomycin is for. I did have a + to babesia, not sure though what clindomycin is for. I still feel the same and wonder how long till I have a day where I can see and think clearly, not to mention every thing else.

    Keep you posted and hope everyone is doing good.

    Derek

     
    Old 08-15-2005, 04:51 PM   #27
    Lesley1954
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    Re: PICC line people

    Thanks for your well wishes, Romans. It means a lot coming from you. I don't know if you remember, but you were one of the first people I corresponded with on the board following your post on visual disturbances (one of my daughter's main Lyme symptoms). I have followed your story closely, with a mixture of sadness at the difficulty you have faced and inspiration for your incredible strength and faith throughout it all.

    I share your hope that all of you -- my daughter included -- get well together.

    Lesley

     
    Old 08-15-2005, 05:42 PM   #28
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    Re: PICC line people

    Dear lesley,

    I hope that all goes well with your daughter's picc-line. When I had mine put in I made myself sick over it and it was a breeze. I never needed anything even otc for pain. There just wasn't any. Poor Romans has been having as hard a time on the IV as she did with the orals. I'm sure you have read.

    I personally am a bath type person and in the beginning I was wrapping saran wrap and tape around the line but then I just gave up on that and was careful. Just be sure you don't get it wet. I would just rest my hand/arm on the top of the soap dish in the tub wall and that worked great. But your daughter may feel more comfortable with some protection, especially a pretty one.

    I don't know if I mentioned to you before but the nurse at my ID's office used to pull an elasticized open weave sleeve over the pic-line and extension so it wouldn't get tangled under clothes. She would wrap the extension in a circle and pull the sleeve over it. She gave me extra ones each week and I pulled one from the bottom of my arm and one from the top so that they overlapped and this made me more relaxed about the picc-line not floating free. Especially at night. She just cut these off a long roll she had and gave me numerous pieces because after a few days they tend to stretch out of shape and seem to get shorter. She also put a large gauze bandage where the end was hitting my skin so it was cushioned.

    I hope all goes well for your daughter. Let us know and our prayers are with her.

    Betterdaysforme

     
    Old 08-16-2005, 09:37 AM   #29
    TeeDee
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    Re: PICC line people

    Hi, Lesley.

    I'm one of the lucky ones - I've had absolutely no problems with the PICC line and no pain during or after the insertion (this is day 19).

    We went out of town for the weekend and while I have neurological issues with balance and walking (I was diagnosed with MS in '92), I can honestly say that I'm beginning to feel positive changes. I had problems when I first started the Rocephin (diarrhea, nausea, yeast infection) but began taking an OTC product called Florastor that relieved almost everything. I also drink a probiotic every day called Kefir that helps keep things in balance as well. You can do an online search for both to find out where to get them.

    I'm really glad for you and your daughter that you found this board. I don't think you could find a more caring and informed group of people to lean on when you have concerns or questions. And to top it all off, we pray for each other and some of us are rather new at this spirituality gig but I, for one, am learning that there is a higher power ready and willing to help us when asked!

    I'm adding you and your daughter to my list of "Lyme-friends" and wish you the best.

    TeeDee

     
    Old 08-16-2005, 04:43 PM   #30
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    Re: PICC line people

    Thanks for the nice welcome, TeeDee. All went well with the PICC insertion today. She's a bit uncomfortable now, but my guess that's because the lidocaine they gave her has worn off. Ibuprofen seems to be taking care of it. She had her first infusion this afternoon. She will be having 2gm Rocephin four days a week, followed by three days off. She is also taking oral Zithromycin and Plaquenil.

    I will keep you posted on her progress.
    Thanks again for your support.
    Lesley

     
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