Lyme Disease Support Group

I start iv roecephin monday and am wondering what to expect? I am nervous about getting the picc and how I will react to the meds?

Can anyone share your experience?

I had my Hickman put in Monday and I started Rocephin IVs on Tuesday. I was worried about the port/picc but it wasn't as bad as I thought it would be. I have some bruising/soreness from surgery but nothing to bad. They said it would last 2-3 days and it's a lot better now. Other than the tape making me itch...lol

I've done well all week with the Rocephin. This morning, I couldn't get out of bed when I woke up. I was hurting from head to toe. I don't think it was the IVs. I have this happen quite frequently even before the IVs started. I take a pain pill and give it time to kick in and then I get up. Good luck.

My daughter has had her picc for 3 weeks. No problem with the picc whatsoever and she is doing great on the Rocephin. So happy we went this route. Feel free to contact me if you have any questions or concerns. Deb g

Hey i had the pic as my first treatment 3 months of treatment,,It did hurt going in but then fine,,I was real sick so it made me feel great,,that was 3 years ago i havent been off of abxs since,,My llmd is gonna wait 2 more wks and then he wants it back in,,im alittle afraid,of it going in,but i do no it will get me back on my feet,GOOD LUCK

Rainey- the picc I should have explained. Done by an RN at the bedside and lots of lidocaine will be used. They thread the catheter with a guidewire in the lumen up through the cephalic vein (inserted in your antecubital/elbow bend area) and then eventually to the subclavian and it will sit near your heart. All are considered central lines, a Picc is just peripherally inserted/ hence the name

Rocephin- my first month- whacko , BUT do NOT go by my experiences as I am an oddball. I was WIRED with each dose, I didn't go crazy or anything (I did on biaxin) but I was just FULL OF TOXINS and so wired it was like I couldn't sleep, nothing I would take even hit me, like if I needed something to sleep, I didn't feel any med affects as I was super duper toxic

The first month was pretty much that, too toxic, I WAS NOT drinking enough fluids, it only took one day to fall behind on the fluid / water consumption and the detox measures and that's all it took for me.

I was left in the bed most of the time. Then I had to hold the flagyl as it was too much (took it once a week)

The second month- my LLMD did a cvs test on me (chronicneurotoxins.com) and realized I was not eliminating toxins even though at that point, I was drinking a ton of water and even doing burbur/milk thistle, snagging some extra IV fluids when I could, everything I could to flush and detox..

SO- he put me on questran to detox and it helped tremendously, still not enough to get me up and moving..

this is what I want everyone to learn here- he needed to say it was okay to BACK OFF a few doses or hold a dose if I was too sick, and I pretty much stuck to my 4 grams a day for four on and three off as I was so desperate to be compliant.. He assumed I would back off, in the end, I went off for a week and it made all the difference in the world.. By ten days almost back to my pre treatment state, not much to say but I could at least drive..

I have orders to re start but I have fluids to boot , an extra 250 cc to infuse if I need them

You HAVE to have weekly labs drawn by home health and you SHOULD see the doc every month, sort of unofficial law for him to lay eyes on you..

Just communicate with the doc, took me 2 1/2 months and stopping meds, calling a few times and I WAS communicating but it all has turned out fine.

You get knocked on your tail more than three days, call the doctor...

Remember to detox when you can, stick it out.. IF you need it, it will be WORTH IT

Im glad I did

Cajun you got a Hickmann? Is it sitting with a dual lumen on your chest/shoulder? Not on your elbow right? (PICC)- just taking a poll as most of us in LA seem to be getting ports but not 100% of the time.

Jenn you did three months of treatment total right? Wow that makes me have some optomism here. 3 yrs off is GREAT.

welcome Deb! Glad to have you and thanks for helping out. Always welcome that

Post edited by: Canuck, at: 04/04/2009 21:30

It's a single...not double. It's in my chest on the left side. I'm having labs done once a week and see Dr. F once a month.

okay so i'm getting one next week i'll i know is that home health will come and do everything, but i had a nerve hit when they were taking blood in november and still have intense constant nerve pain in that arm - i'm so scared

I just got my picc line put in last friday and I have been quite sick since then. I think it is the combination of meds and herxing. It does hurt a bit going in and my arm has been quite sore since then but I have been told that it will go away.

do you usually keep taking doxy once you get the pic?