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For those of you that have taken IV meds, can you please tell me what I may expect from it? I am to start next week. thanks!! Posts: 90 | From NC USA | Registered: May 2002
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I'm on my second round of IV meds. Are they putting in a PICC line? PICC line would be much easier being you won't have to get stuck so much.
I tolerated the IV Rocephin really well. Dose could be once or twice daily. Having another family member get involved with the teaching would be good so he/she can help.
I was on a 8am and 8pm schedule. After infusing the IV meds, I would flush the line with heparin (keeps it from clotting). Can't get the IV site wet, so use something to cover and tape your arm up for the shower.
Make sure you take your probiotics !! Very important. Really works. Are you infusing this at home? I'm going to assume so. Nurse will bring everything to your home (supplies, IV pole, IV meds etc) and then delivery is usually made weekly with new IV meds.
The nurse usually draws blood weekly to keep an eye on liver and kidney function along with blood counts. I haven't experienced any nausea. The one thing I've noticed is fatigue and lots of it.
It could be from the treatment but I've felt like this with the illness so its hard to say. Make sure you wash your hands all the time when fooling with your IV meds, tubing and site. Very important!
If your spouse or family mbr helps out, he/she needs to wash their hands real well before handling the IV. I also use anti-bacterial rinse afterwards. Your nurse will go through every step with you and probably watch you do it for the 1st time to make sure you're OK with the process.
It's not difficult, just anxiety producing when you first start. I wish you well!!!!!
Posts: 64 | From Maryland | Registered: Oct 2006
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For keeping your arm dry - I used (on a nurse's tip) - the Glad cling wrap ---I never had a problem getting the dressing wet.
I did 7 months of IV Rocephin. I did push IV at home and had a PICC line. No clots, stayed in place - no problems. The first 2 days after placement my shoulder felt bruised and I was really tired. It took 2 weeks before I felt any better.
Probiotics are a must because you don't want to get C-diff. Also, doc may prescribe Nystatin to go with it.
For the first 6 weeks I was 2 times per day every day. After that they upped the dose and I did 4 days on (2x per day) and then 3 days off.
It took a 1/2 hour each time for me once I got the hang of it. If you have a home health agency come in they will go over everything.
I had blood taken every 2 weeks to check Liver, Kidney, red/white blood cell counts.
Good luck!
Posts: 298 | From Maine | Registered: Jan 2004
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Make sure someone is monitoring your liver enzymes. 2 weeks into IV rocephin I started experiencing horrible gallbladder attacks. Of course I thought "here we go, new crazy Lyme symptom."
I didn't seek any help and it was AWFUL!! Sure enough, a week later I got a call from my doctor telling me to immediately stop all medications....my liver was 'sludging' and my liver enzymes were at dangerously high levels.
I've since been doing just orals and my liver is fine.
Otherwise, wasn't too big of a deal doing the IV treatments everyday. Biggest challenge for me was not being able to lift my 18 month son.
Good luck!!
Posts: 561 | From mass | Registered: Jul 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
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If you are getting a picc line it MUST be kept clean.
They make a plastic sleeve that you can use in the shower. In my opinion tons better than plastic wrap. My infusion company had sent the sleeve to me with my supplies. but if not they can be bought and I dont think they are that are too much money.
I let mine dry out and reused it alot.
My stiches itched like crazy. I was so happy when they fell out. If you dont have stitches in anymore you have to be even more careful.
My company had also sent me a net sleeve. This worked much better than the pany hose or sock method I had tried earlier in my treatment. I feel that the net kept it more secure and because it was net it allowed my arm to breathe more.
You should definetely expect to have frequent regular basic bloodwork done like ks stated.
Like with any abx you may herx.
If the IV abx you will be taking is rocephin be aware it can cause gallbladder problems so be vigiliant to any signs that the gallbladder may have been effected.
I will be getting a PICC line. From all of the post here, I am concerned about gall bladder issues. I think the first iv meds. will be the rocephin.
Was it painful to sleep with the line in? No stiches but I forgot what the nurse said they use at the hospital when they first put the line in.
I am really hoping the this will help, I have at this point been on orals for a 1 and half year. Also concerned about once you stop IV if you may be worse than when you started. Posts: 90 | From NC USA | Registered: May 2002
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I've been journaling my Rocephin IV Therapy daily now for six months @ www.canlyme.com
It's the Canadian Website for lyme. I'm from San Francisco and have just completed my sixth full month. I expect to do it for up to one year.
I'm feeling the best I've felt in years. I got very ill in 2005 and was diagnosed in June 2006.
I spent the first full year on orals. I also did six full months of bicillin shots @ 4.8 million units a week.
I would say the combo of all of these got me where I am today.
When you go to the website, go to live discussion and then I'll be listed on the first page under :
Sharing my Rocephin IV Therapy.
Good luck, I am scheduled to get my gallbladder out, I meet with the surgeon tomorrow. It's the downside of Rocephin. Some people will lose a gallbladder because of it. But I knew going in and am willing to lose a gallbladder rather than feel like I'm dying.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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Good luck with your IV. I was fortunate in finding a great infectious disease MD specializing in Lyme Disease. I was pretty bad by the time I found him. He put me on Rocefin IV for 4 weeks the first time. He also put me on Urso to prevent gallbladder damage. It must have worked because I had no problem there. He also monitored my blood every week. The home healthcare nurse came twice a week, once to put the IV in and after 4 days, she came to take it out. I infused twice a day for 4 days and did an oral treatment for three days. The oral med. was Flagil and I had a really bad reaction to that. I took probiotics during that time as well and tolerated it ok. It was the first time in nearly two years I felt relief from pain and a little more mental clarity. I hope it works well for you.
Posts: 1 | From Tampa,FL | Registered: Jan 2008
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I was wondering if those that have had this disease for a long time where helped with IV treatment. I am going on 18 yrs with this.
Posts: 90 | From NC USA | Registered: May 2002
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Gall bladder issues can be minimized while on Rocephin if your doctor prescribes Actigal. I had a picc line for 10 weeks, and had no problems with my gall bladder, but I diligently took my Actigal twice a day.
As for the trials and tribulations of having a picc line...I would do it over again ten-fold if my body would allow it!! Showering is a little more tedious, and you need to be aware of what your body is telling you, i.e. soreness, temps, reactions to dressings.
My nurse used to joke that I had the worst luck out of ANY of her patients. In 10 weeks, I had three different lines; the 1st line caused mechanical phlebitis, 2nd line was a mid-line that formed a clot in my arm, and the third was great except for the allergic reactions and infection. I had an allergic reaction to the line itself starting at week 7, then the adhesive while using the most allergen-free dressing available. On Christmas Eve, I got a full infection in my line.
But after all of that, I think the Rocephin really helped. I felt real improvement after week 6, and I would jump at this chance if it presented itself again. Long story short, it's worth going through the road bumps as long as you are always conscious of what your body's doing. I never hesitated to call my doc or nurse if I thought something was getting funky, and as a result, I faired well given my complications.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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I hope that this does something to improve my walking problems and other neuro.stuff.
Won't know until I try it and I have tried plenty of different things to try and get this bug out. Tried accupuncture, homopathics, herbals,hyperbaric treatments, chiropractors....
Just don't know how I am to return to work with the IV in and limited to lifting nothing over 10lbs. Considering when I do go back to work, the docs. want me to use a manual light weight folding wheelchair...should be interesting.
Posts: 90 | From NC USA | Registered: May 2002
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Hi lrtbc, I have had Lyme for 20 years (18 years undiagnosed/untreated)- almost my entire life. I have a PICC line and use IV ABX, though my LLMD refused to give me Rocephin because she thinks my gall bladder is diseased. Ask for Actigall or a similar drug with it, and have regular ultra sounds to make sure you are not developing stones.
It sounds like you have neuro-Lyme? I do too. I can't walk well either (dysautonomia) so I often use a wheelchair these days. I exercise my leg muscles at home, with supervision, but it is actually a relief not to worry about wiping out and taking half the checkout line with me when I make it out to the store!
So far IV ABX have NOT been a miracle for me- I'm on my 5th month. But I am starting to get better. It is slow and painful for me but everyone responds differently. Don't give up if it takes time- after all, your body has spent 18 years under assault! I am just now starting to experience results.
What you should not worry about (though we all do before we get one) is the PICC line itself. Yes, you will be a little sore for a few days. I used a heating pad until it stopped aching. But after the first few days, it won't hurt. It may bleed a little at the site for a bit; that's okay too.
You've gotten good advice about what to expect with your PICC. I have only two things to add: 1) Glad PRESS AND SEAL WRAP- not cling wrap. It works incredibly well, doesn't require tape or rubber bands, and it's disposable so it doesn't need to dry out.
2) Be OCD about your PICC. Not only should you wash your hands, but make sure anyone who comes near it does, too. Never get it wet. Always have the dressing changed immediately using sterile methods if it comes off. Sepsis is serious business!
With that said, congratulations- you are embarking on the road to recovery! It may not be easy, but it's better than spending another 18 years with Lyme, right? Posts: 54 | From Virginia | Registered: Jan 2008
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