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    Old 11-09-2004, 09:08 AM   #1
    Jenn100
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    Share your experience with IV Rocephin and PICC line

    Hi everyone hope all is well,
    I am completing my fifth month on zithro/plaquenil and mepron. I also have an MS dx due to the number of lesions and their location. My doctor is now recommending I start 2 months of IV Rocephin to get the meds into the central nervous system faster. I will need to have a PICC line inserted at a local hospital. I'll admit this scares me alot! I would appreciate hearing your experiences with IV meds. and the insertion of a PICC line. How did you go about your everyday lives with this in your arm? I have two children and can't imagine how the line will affect my daily life. I've been handling the oral meds just fine but the MS dx is pushing my Dr. to treat me more aggressively. I wonder if the IV Rocephin worsens symptoms as the die off is greater and faster? Is the insertion of the PICC line painful? How did you care for the line? I'm sure the nurse will go over all of this when my insurance co. approves the IV treatment. That's up in the air as well (HMO!) So far they've paid for the 5 months of oral but who knows with the IV therapy. Thanks in advance for your help and for sharing your experience.

     
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    Old 11-09-2004, 11:19 AM   #2
    ohio hunter
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    Re: Share your experience with IV Rocephin and PICC line

    hi jenn100
    i did not have a pic line i was told i would get abx for 1 year or longer so i chose a mediport implant. this sounded safer and with proper covering, i could still shower. we changed the huber needle and clear covering every3-5 days. it has been in for 17 months now with no complications. yes it hurts a bit when changing but the stick doesn't last long. i used iv rocephrin for 8 months. my insurance covered 54 day and stoped claiming long term abx experimental and nonconclusive and not covered. i have seen iv treatment is easier to obtain with a dx of micoplasma infection, then they give you doxicyclene. i have been on abx over 2 years and have not turned the corner yet but i will not give up.
    good luck and God bless you,
    jon

     
    Old 11-09-2004, 01:05 PM   #3
    ticker
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    Re: Share your experience with IV Rocephin and PICC line

    Hi Jenn100

    When are you getting the line put in? Getting a PICC line can seem very overwhelming, but it really is a simple procedure. Usually the area where the line will be inserted is numbed beforehand. When the line is inserted, there will be a stick but you should not feel it for long. The line will be threaded up to the desired place and an x-ray will be taken to make sure it is in the proper place. Do an on-line search for PICC line insertion for a more detailed description.

    You need to be careful with certain things, but the line should not interfere much with your daily activities. Most important is to keep the area clean and dry at all times. If there is ever any kind of redness or pain, call your nurse or doctor immediately. The nurse will explain the infusion procedure thoroughly and will supervise you until you are comfortable doing it by yourself. I found it helpful to write all the instructions down step by step. Not only do you have a record of the instructions, but writing it down reinforces the information better. You will get the hang of it in no time. There is a great product you can get to cover the PICC line so you can shower without getting the site wet. It is called a PICC line protector and you can buy it on-line at Brown Medical. It is a big help.

    There are ways to get prescription assistance for people whose insurance company will not pay for meds or for people who are uninsured. Hopefully, you won't have any problem.

    IV meds are stronger than oral so you may herx worse.

    I bet you will adjust to this much quicker than you think. Good luck!

    Last edited by ticker; 11-10-2004 at 05:51 AM.

     
    Old 11-09-2004, 01:17 PM   #4
    ncgirl88
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    Re: Share your experience with IV Rocephin and PICC line

    O.H. and Ticker,

    Do you have to be careful the way you sleep with it?

    ncgirl88

     
    Old 11-09-2004, 05:28 PM   #5
    ticker
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    Re: Share your experience with IV Rocephin and PICC line

    Usually there is no problem with it when sleeping. There is a netted bandage that goes over the line which helps to keep it in place.

     
    Old 11-11-2004, 01:46 PM   #6
    CFD 333
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    Re: Share your experience with IV Rocephin and PICC line

    I had a picc line put in February of this year and injected Rocephin 1gm daily. I'll have to say that my experience with this wasn't the best thing that ever happened to me, but, truthfully, its not that bad. I had a nurse come to my home and after creating a sterile environment, she used a special needle that allowed to her fish the picc line into the vein at bend of my left arm(non-dominant). The line goes up the arm over the bicep about 8 inches from the insertion point. I was told that with some people it hurts quite a bit and others almost not at all. For me, it pretty much felt like it does when a nurse takes my blood--thats all. My arm was sore for a couple of days but nothing a couple of advil couldn't help with. Basically, the daily routine was simple--Every morning I would get up and then flush the line with heparin to keep the line from developing any blood clots then inject the Rocephin over a period of 3-5 minutes. It's important to always sterilize the line attachment and the syringe tip with an alcohol sway before injection. Always flush the line first and then slowly inject the Rocephin to prevent nausea. Then, before bed, I would flush the line with heparin again. Its no big deal really, it just takes some time to get used to doing it yourself with only one hand as you have to hook up the syringe to the line. You could always have someone help if you need to but its better to learn it quickly on your own. Showering, of course, is a pain because the line and bandages surrounding it can't get wet. Its important to keep the actual insertion point dry and clean to prevent any infections. I used to take a plastic bag and punch a whole through the other end and then use waterproof tape to seal it off at both ends. You will eventually learn to do this yourself also. You can use the arm to do just about everything you always did before except NO HEAVY LIFTING--this can irritate the line and cause an infection and the insertion point will mostly definitely start bleeding. The nurse came to my house once a week to check out the insertion point to make sure there were no infections or bleeding, remove the bandage and clean the area with alcohol (burns a little) and then rebandage it. After six weeks, that was it...she removed the line (doesn't hurt AT ALL) and puts a bandaid over it. To tell you the truth, after six weeks I actually missed having that line in--it almost became like a part of my body. So, don't worry, if you follow all the precautions, you will have no problems.

     
    Old 11-14-2004, 06:07 PM   #7
    ticker
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    Re: Share your experience with IV Rocephin and PICC line

    Jenn, good luck. Remember there are ways to get help if your insurance company will not pay for treatment.

    Keep us posted.

     
    Old 11-14-2004, 06:21 PM   #8
    sleeperwoken
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    Re: Share your experience with IV Rocephin and PICC line

    Hi all, thanks for being so helpful with so many things to do with lyme. Can you give more information about getting help when insurance companies cut you off? I have no insurance now because my insurance company would not pay for the medications that I needed. I pay for them myself, and so I can't pay for insurance. Do you know what I mean? I only have so much money, can't pay both!

    Right now I take zithromax ($450 a month), doxycycline (150) and plaquenil. I go to a wharehouse type store that has a pharmacy. They seem to be cheapest.

    Thanks again for wanting to help people.
    sleeperwoken

     
    Old 11-14-2004, 06:37 PM   #9
    ticker
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    Re: Share your experience with IV Rocephin and PICC line

    Hi sleeperwoken, welcome to the board!

    I am very sorry you do not have insurance. I know the meds for Lyme are very expensive. The majority of drug manufacturers have prescription assistance programs for people who are uninsured or whose insurance will not pay for medications.

    Get on-line and find out the name of the maufacter for each of your medications. For instance, I believe Pfizer manufactures Zithromax. Then go to the home page for each company. Do a search for prescription assistance and see if there is information. If not, get the phone number and call for information. If you still cannot get any help, get the name of the CEO off the website and write him/her a letter. Explain your situation and end your letter with "Can you help?" I would be surprised if you did not get a response. If you don't get a response, do some research on-line for prescription assitance. There are probably other programs available.

    Good luck! It may take some doing, but there is always a way to get help.

     
    Old 11-15-2004, 12:00 PM   #10
    sleeperwoken
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    Re: Share your experience with IV Rocephin and PICC line

    Thanks, I'll check it out.

    It seems like you don't hear from people who are cured. I guess I can understand that, but I'm trying to find out how I'll feel when I'm better. I've been sick for 20 years. Do people who get better have residual effects like arthritis? Do people get their hair back?

    I believe that the lyme will go away eventually. I just wonder what I will be left with. Especially my skin. I'm Irish and my skin is really ruined from the doxy. I have brown marks all over my face and arms. I'm worried about my digestive system too. How many antibiotics can one body take?!!!

    It's bad enough that my hair fell out, now my skin is ruined also. I'm not depressed, just discouraged. I have had depression before...that's a whole different ballgame. So far none of that.

    Thanks for listening...

     
    Old 11-15-2004, 12:21 PM   #11
    dealer1111
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    Re: Share your experience with IV Rocephin and PICC line

    Sorry to hear you having such a hard time ((

     
    Old 11-15-2004, 07:27 PM   #12
    ticker
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    Re: Share your experience with IV Rocephin and PICC line

    sleeperwoken, it is terrible that you have been sick for so long. People do get better. When they do, they are likely cacthing up on all they have been missing and not posting on the boards.

    Lyme can cause hair loss, but so can thyroid disorders. It seems that some people who have Lyme also have thyroid issues. You may want to get a complete thyorid panel done.

    Is the skin problem a side effect of Doxy? Is it from being in the sun? There are many different meds that can treat Lyme.

     
    Old 11-16-2004, 06:22 AM   #13
    sleeperwoken
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    Re: Share your experience with IV Rocephin and PICC line

    Hi all, thanks for responding. It's so good to have you all to talk to. You're right I do have thyroid problems--Hashimotos hypothyroid and I am being treated for it. I have major hormone problems too, which my doctor cannot explain because I am lacking most major hormones. I have a DHEA reading equivalent to someone who is 90 years old, and I have absolutely no testosterone at all. Women need testosterone too. Estrogen and progesterone are completely screwed up and my doctor thinks it is possible that my pituitary gland is "off." Just not working at all. I don't know if this is from the lyme but if it is then maybe it can go back "on" again.

    I have had lyme for so long that I think it has affected every system of my body.

    Yes, the doxy killed my skin. I thought I was being pretty careful, but at 600mg I just got burned all the time. I had on SPF 50 and always had a huge and very ridiculous looking hat on, but just being in the car travelling anywhere I would burn so bad. I liked the hat, but my kids were embarrassed.

    I want to ask you guys about some medications. I read that tetracycline works better than doxy because it doesn't need an certain pH to be effective. Have you heard that? Also, regarding yeast, I heard that diflucan is more effective than ketoconazole (Nixoral) and has less side effects (liver probs). Have you heard that?

    Thanks for being there. I'm grateful for you all.

     
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