I am most likely going to be starting up IVs again after I finish this month of treatment for Bartonella. My new LLMD wants to do IV Rocephin but she said she usually pulses it, with four days on and three days off or something like that. I know this is done to avoid gallbladder problems but I don't have to worry about that, I lost my gallbladder during my last treatment with Rocephin. Are there other reasons for pulsing? Advantages? Disadvantages? Anyone have experiences to share?

I'm also interested in what kind of lines people who have pulsed have had. I have had a picc before and after the ordeal of having it put in (which was no picnic, lots of complications) it ran smoothly for the six months I had it. But, if I'm pulsing (and even before I thought I might be pulsing) I'd be more interested in getting a port. I've read a lot on here about ports, asked some questions, and have a lot of info about them. I'm just curious about ports vs. piccs and pulsing specifically.

Thanks,
Annie

What is scaring me is this talk about losing the gall bladder. I'm using mine right now. In fact, I'm rather attached to it. I'd hate to lose it.

Annie - Were there complications that caused you to lose your gall bladder? I'm sorry I don't have more info about the pulsing, but I'll know more in the coming weeks.

It's not a regular occurrance for Lymies to lose their gallbladders while on Rocephin, but it does happen. Unfortunately, my doctor wasn't keeping an eye on my gallbladder and I wasn't taking anything to PREVENT the stones from forming. A lot of people take Actigall to prevent stones from forming, so you should ask your doctor about that. Also, you should request to have abdominal ultrasounds done on a regular basis - about once a month - to make sure it's caught early if stones do form so the Rocephin can be stopped and non-surgical alternatives can be used.

Unfortunately for me, I wasn't on Actigall, wasn't having regular ultrasounds done, and did develop stones. When I started having attacks, I had an ultrasound done and it was found that I had stones so I set up an appointment with a surgeon to talk about my options. But, I didn't make it to the appointment. I had a really bad attack (lasting about 15 hours) and went to the ER where they admitted me and took my gallbladder out a few days later. But, surgery can be avoided, especially if you take measures to stop the stones from forming in the first place.

Also, IV Claforan is very similar to Rocephin but doesn't have as much of a chance of causing gallbladder sludging and gallstones. It's more expensive but if you're really worried about it you could talk to your doctor about that, too.

Good luck and if you have anything else I can answer for you (or try to answer) feel free to post back or e-mail me at [email protected].

--Annie

There is a disadvantage for people who may have antibiotic allergies.

quote:

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Originally posted by arg82:
Are there other reasons for pulsing? Advantages? Disadvantages?

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I was on Rocephin for almost 6 months -- I did 2 grams/day on Monday-Friday with the weekends off.

I started with a PICC, but had numerous problems with it, so I ended up with a Mediport after a few weeks on the Rocephin...

I was unaware of the gall bladder problems, or potential problems, until off of the Rocephin but on other IV antibiotics -- I did a gall bladder flush, but it was hard to tell if I had success with that or not.

I've been on almost every IV antibiotic used to treat Lyme... they all had different regimes, Rocephin was the only one that required weekends off (for me that is... others may be different).

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"We are, each of us, angels with only one wing. And we can only fly embracing each other."

A year ago I was on IV stright, 7 days a week for 5 weeks and it was real rougth going.
With the pulsing I feel pretty good up until the 2nd or 3rd day of the IV, after which it becomes a real drain physically.

It keeps getting worse for the next 3 days or, after which it gets better. The cycle is quite noticable but the intensity has decreased over time and the lyme symptoms get better after each cycle.
Since the half life of the pulse drugs are much shorter than 3 days, I strongly suspect that the physical effect is the result of bactericidal action of the pulsed drugs, with subsequent clearing of the bacterial fragments from the body.

My take on the official line that pulsing "is better tolerated by the patient" is right on target and now that I had done it both ways, I would say that at least for me it is the way to go.

WHAT I LEARNED ABOUT PICC LINES

A trick I learned about the PICC is to wrap your arm with a semiadhesive bandage like the 3 M "no Ouch tape" or COBAN tape. *(this stuff sticks to its self but not your skin)

If you put it on right, it keeps the PICC and dressing tight (it is an elastic tape) and I have found that you could even go for 2 weeks without a dressing change. It works best if you put the tape on as soon as you have dressing change, keep it on for a few days then you can take it off and the dressing and PICC line is set in place quite nicely.
Also, to avoid sweating under the tape, use one of the open mesh "sock" things that comes on a roll UNDER the tape. this leaves a samll air gap and serve to wick up any sweat.

Another trick is to make sure that the line is long enough to make a U turn back up the arm so that the port is at or past the suture clamp. A U about 1" across seems to work best.
I have had 3 PICC lines so far and this setup is by far the best as there is zero stress on the connections. If the line is small, it will also tend to kink as you move your arm (ie make a muscle).
I found that the kink can be avoided by putting a strip of steri-strip under the path of the line, then place the line on top and fix in place with the offsite dressing so that it stays on top of the tape.

Hope this helps.

Jane, I hadn't heard of such high doses of Rocephin being used (8 grams seems like a lot) but it makes sense that being able to pulse in high doses a few days a week would work better than a constant stream of the same dose. I believe I would be on the regular 2grams a day but I really don't know what this doctor usually does with IVs so I'll have to wait and find out at my next appointment in June.

David, thanks for the info. I did have a picc line for six months while I did IVs a few years ago and I figured out a lot of tricks during that time. I used stuff similar to what you were talking about (the bandages that stick to itself but not you). I used something called VetWrap by 3M. It's a bandage that sticks to itself and comes in a whole bunch of different colors. I had my picc line in for the whole summer and I work with kids so it was fun to be able to have the cool colors instead of just a sock or something over the line.

I have a few more questions. For those of you who are doing pulsing M-F with the weekends off, is there a specific reason other than preference that you take the two days off on the weekend? In the summer (when I'd be starting all this) I babysit one afternoon a week for a little girl and basically my job is to take her to the beach and play with her and go swimming and stuff. When I had my picc line before, I had a special cover so I could go in the water (it worked really great) but it did hinder my ability to just hop in the water. If I were to get a port this time around (which I think I definitely would) it would be nice to be able to be deaccessed for that day so I could swim with her. Any thoughts?

Thanks again for your responses.

--Annie

On the pulse duty cycle. I am on 4 gm/24 hours and use a pump that proves 2 gm in hour every 12 hours.
The days off are totally arbitrary, and it has in fact been described to me that the time off is not really important.
The important parameter to maintain is 4 days (or I guess 5 days for others) on the IV/ABX. the gap can periodically be more if needed for trips etc.

I can't say anything about a port except to reflect on what I heard from some of the nurses that ports are usually used for less frequent access requirements.

I had wondered about about a port and after reading about them and I wondered about how they would be since the window on the port is not that big??...

After a while, I would think that after a lot of acess/de-acess would make the skin covering the port either sore or tougher, something like is seen on diabetic patients fingers, where they stick themselves for glucose measurements.

But it was only a thought with no clinical information to support the theory. Maybe someone here actually has a port and can comment on it.

So if you had the iv nurse come out/or you go to her that day or the day before if pulsing and have her take blood and deaccess you (my nurse likes mine covered for 24 hours before getting wet though some don't) you should be able to have a few free days then be accessed when treatment is to start again.

Or you can deacess yourself - once again my llmd did not want that because they take blood from my port (though others have said its a no no) and check for infection before taking the needle out. But I have deaccessed myself before and it isn't that tough, kinda wierd the first time.

David, I have posted before about ports and read a lot of posts about ports as well as looking up a lot of info on the internet more generally so I feel I have a good handle on how it can be used for IV antibiotics. I think the biggest advantages of a port over a picc (from what I've read and from having a picc myself in the past) are 1) less chance of infection 2) port can be deaccessed on "off" days or for breaks in therapy or vacations 3) more permenant for longer term IV therapy. I also personally would rather have the IV line in my chest than my arm so that I could learn to care for it myself instead of having to rely on nurses to change the dressings, etc.

It is true (from what I've read) that ports are most commonly used for more infrequent treatment (most often for chemo) but even for the infrequent treatments it seems to be accessed once a week or once every other week. From what I've read I've also found that the area over the port where the needle goes in does become tougher over time but this apparently isn't a problem. In fact it sometimes reduces or eliminates the need for ELMA cream to numb the area before accessing.

Aaronkatie, you've heard that some doctors don't allow blood draws through a port? From what I've read online that's one of the reasons they're put in, not only for treatment but for blood testing. I would be interested in learning to access/de-access the port myself as well as do any other maintenance stuff that's required to take care of it. Do you think that would be possible?

Okay, I need to stop thinking about this so much. I still have another three and a half weeks of this treatment that I have to get through before I go back and start talking about IVs, I need to get my mind off all this right now. I'm just very...anxious? excited (well, not exactly)? I want to know everything I can about it so I can go in with good info to make a good decision and be able to talk to the doctor about my reasons for wanting a port over a picc.

Thanks,
Annie