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Re: Questions on IV Treatment

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I was on 8 months of IV rocephin. What would you like to know? Always

have a nurse change the dressing.......and never use a pair of scissors.

If the line gets cut, pull it out.......the pumping of the heart can pull it

inside the body. That will never happen as long as no one is playing around

with scissors.

It will go pretty smoothly, if you follow all the directions of your nurse

and Dr. I was not your best patient......I live on a lake and went out in a

canoe and fell in the lake (hence the line got infected). Seems I was

always getting the line wet and needed dressing changes.........many times I

attempted to make the change myself. NOT A GOOD IDEA.

I've heard of lines lasting for many months.........Being a PE Teacher (very

active), and not always doing what I was supposed to.....caused me to have

five lines put in during this time.

One got infected, one got cut (stupid mistake), two sprung leaks, and one

had to be put into a different vein, because the vein was too small and

wasn't happy with the line.

Now, mind you I am probably the unusual.........

You will probably not have any of this happen. When showering, I used a

plastic cover over the arm......(that they use over a cast)........that

worked out well.....you can pick them up in a good pharmacy.

Well that is about it..............

I'm sure things will go smoothly for you. Make sure you keep the line

covered. Co-band works well for that........and there are all sorts of

neat colors. You can always pull a cut-off knee sock over it as well.

connieknwnj

It must happen in your mind before it happens in your life!

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> I have a 14-year old daughter on her second week of IV treament

> (Rocephin) for Lyme.

J , when I was first dxed that is what I did, 14 days IV Rocephin followed

by an open rx of ( I think) 400mgs Amox, that Dr told me that this

protocol was whats listed, but wasn't enough and I should find a Lyme Dr.

That Dr upped my Amox and added Doxy along w/ the dxes of Ehrlichia and

Babesia.

Rocephin did nothing but wear me out, so much so that I would fall asleep

before they even got the needle in. I tried to work through it but couldn't

and went on Short Term Diss through work. I was sleeping all the time,

breaks, lunch, all evening/night, couldn't stay awake, if I sat, I was

asleep. Hope this answers your question,

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Here's our experience so far -

Our 17-year-old daughter has been on IV Rocephin for about two months now.

She has always herxed badly with everything, so we consulted with a pain

management specialist prior to starting the IV. He has given her patch for

pain, and something called Singulair, which is supposed to keep the dying

spiroketes from releasing toxins. Our daughter was doing quite well with

this mix and we were seeing improved energy and very little discomfort.

Our Llmd has since added Doxy to the mix and now the pain meds are less able

to keep up, but she's still tolerating it all, which is better than when we

started a year ago!

Our best to you and your daughter - Carol

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Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5 lines

....I have had a wonderful experience. I do not shower ( I take baths), I only

walk for exercise hence I do not sweat too much, and aside from one small

slip-up, have been sailing along. If you plug in the Rocehprin, MAKE SURE you

get the blue clip open right away- if you don't well, blood comes into the

line-that was my slip-up but all turned out well after flushing with 10 cc of

saline and then putting in Heprin. Goodluck!!

Char

jar1329 <julie@...> wrote:

I have a 14-year old daughter on her second week of IV treament

(Rocephin) for Lyme.

Can anyone share their experiences with me?

Many thanks,

J

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I too have had things go well with the IV Rocephin. I believe I am going on

my 8th week.

I have an NP who comes once a week to change the dressing.

It is so much better than being a pin cushion. My behind was really getting

lumpy.

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<<<<<Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5

lines ...>>>>>

I said I was an unusual case........that most lines last months.

..........I live alone and quite a distance from the nurse that would come and

take care of my line. Often I found myself taking care of the line myself....I

didn't have much help...

Connie

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I saved this with another hint someone sent....don't worry about it after

you read it.

Re: [ ] Questions on IV Treatment

Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5

lines ...I have had a wonderful experience. I do not shower ( I take baths),

I only walk for exercise hence I do not sweat too much, and aside from one

small slip-up, have been sailing along. If you plug in the Rocehprin, MAKE

SURE you get the blue clip open right away- if you don't well, blood comes

into the line-that was my slip-up but all turned out well after flushing

with 10 cc of saline and then putting in Heprin. Goodluck!!

Char

jar1329 <julie@...> wrote:

I have a 14-year old daughter on her second week of IV treament

(Rocephin) for Lyme.

Can anyone share their experiences with me?

Many thanks,

J

Questions and/or comments can be directed to the list owner at

-Owner

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My biggest problems with the line:

1. insertion process was horrible. I pass out from blood draws

sometimes, so my physical reaction to a line was BAD.

2. when it was first inserted, after they messed up on my left arm,

they put the line in too far on my right and it was triggering

arrythmia every time I brought my arm in towards my chest (brushing

teeth). I was told it was protocol to put it in that far, just like

it was protocol to do insertions without sedation (lol in retrospect -

the only way they got it in me after the failed attempt in the left

arm was with LOTS of sedative and several staff holding me down). I

had to get my cardiologist to give me the right vocabulary, but I

eventually convinced the radiology folks to pull the line back a bit

so I could brush my teeth without brushing my heart too.

3. drinking enough fluids to stay adequately hydrated in June (when I

had my line in) is really hard! It requires a strong bladder and a

lot of discipline. You have GOT to bring that water bottle

everywhere, and a spare set of tissues in case you need to " go "

somewhere less than well equipped.

4. I did nightly hep/saline flushes. I sometimes had problems towards

the end of the treatment, when I had finally gotten used to the line,

with going out somewhere and forgetting to bring my heparin flushing

supplies. After getting stuck out once or twice with a mad dash home

to get " flushed " in a reasonable time, I decided that if I was going

somewhere that might even possibly keep me out past my flush time, I

would bring my supplies in a kit with me. I kept them with me where

ever I was if I was out so they wouldn't sit in a hot car.

5. Most of my life, I have been very independent. I like to have

control over my own body and I don't like relinquishing it to anyone.

So having the line in my dominant arm and being on lifting

restrictions and having even my ability to bathe myself limited was

really hard for me. My partner and I had fights because I was

emotionally stressed, had neuro-lyme, and I was often angry or

distraught about being so dependent. I can only imagine how going

through that at 14 would feel, given that at 14 there are already

issues of independence coming up even for someone physically healthy.

What I told myself to get through was that wanting to be independent

is all well and good, but if I took it to a level where I hurt myself

or mess up my line in an effort to do it all myself, I could end up

needing even MORE help for longer and I would hate that. It was short

sighted and childish of me to expect that I could continue to act like

I could lift everything, vacuum everything, wash my hair without help,

etc. just because I didn't want to say " help me please " . I had to

limit my lifestyle somewhat, I had to prioritize what I really needed

to do vs. what I wanted to do, and how badly I wanted to do it. I

couldn't expect to go at my usual pace, then get frustrated with

myself or my support people when that couldn't happen. Realizing all

this helped me ask for and accept the help I needed, and it helped me

be more sensitive to the abilities of my partner and family. In fact,

it has changed my outlook on asking for and accepting help in general,

so that is one good thing to have come out of this I guess.

6. anxiety about the line (eeek! what's this thing in me!) was

difficult to handle. I think that was the worst part. I got over it

to some level, but it difficult.

My best wishes for you and your daughter.

-

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