I'm trying to figure out my treatment path and conflicting LLMD suggestions.

This includes trying to determine what it would mean for my life to be on IV abx. Right now I work full time and then typically am out away from home after work with one thing or another til I come home and crash before doing it all over the next day. Or I'm traveling. My work requires lots of travel.

IV Q's

1. how long does it take to infuse?

2. how mobile, how bulky, how obvious is whatever equipment....can I take it on public transport to work and infuse there when I'm in town during weekdays, so that I can still have maintain my lifestyle during eves while at home?

3. CAn I take whatever is required on planes while traveling for work?

4. What exactly is required? Is it a pole and bag like when someone is in the hospital recieving IV?

5. Port or PICC? Advantages/disadvantages of each? My NY LLMD recommended port because he thinks its less likely to get infected.

Thanks for all information you are able to share. I REALLY appreciate it!!

I have a picc line . I have had it just over 1 week and the routine is easy. No poles, bags or anything like that.

The line site is about 4''x4''and is located on the inside of my arm just below my elbow bend and I wear a strechy loose band over it so it isn't that noticable.

It takes me about 1/2 hr. to push the meds through. I first flush with a syringe of saline, then the syringe of rocephin, followed by another saline flush and finished with a syringe of heprin.

So all I have to carry with me is alcohol prep pads and 4 syringes.My medicine is allowed to be taken from refrigeration 6 hours prior to administration so time of administration has to worked around that.

I was aprehensive about it all, but it is relatively easy.The only restriction I have is not to get it wet and not lift over 10 Lbs. I know nothing about port so maybe someone else can answer that.Good luck which ever way you go.

1. how long does it take to infuse? If it's done in a bag via gravity, about 20-30 minutes.

2. how mobile, how bulky, how obvious is whatever equipment....can I take it on public transport to work and infuse there when I'm in town during weekdays, so that I can still have maintain my lifestyle during eves while at home? With the bags (which is what I've used), you probably could bring the stuff on public transportation but it might be a pain. You could easily get up a little earlier and infuse while you're eating breakfast or something. You don't necessarily need an IV pole, lots of people use something called an "S hook" which is just a piece of plastic in the shape of an S that the bag can hang on and can then be hooked over anything that is the right size and height (a curtain rod works really well). The bag of medicine isn't big so it could fit in a bag and the flushes (saline and heparin) are very small so they could be easily transported.

3. CAn I take whatever is required on planes while traveling for work? You'd need to take a cooler with the medicine in it but that is doable. The rest is easy enough to manage with, just make sure you have everything with prescription labels on it so you won't have trouble with the security.

4. What exactly is required? Is it a pole and bag like when someone is in the hospital recieving IV? An IV pole or "S hook", the bag or syringe of medicine, 2 syringes of saline for each infusion (one before and one after the infusion), 1 syringe of heparin (flushed with after the second saline to keep clot from forming in the line), alcohol pads. That's pretty much it.

5. Port or PICC? Advantages/disadvantages of each? My NY LLMD recommended port because he thinks its less likely to get infected. I have had both. I had a PICC in 2002 for six months and that was fine but I've had a port for almost a year now and I have to say I LOVE my port. But I think the decision depends on a few things: a) how long you plan to be on the treatment, b)whether you'll be doing infusions everyday or pulsing it with some days off, c) whether you need to be able to lift things with your arms. There's a good post about ports here.

Hope that helps!

--Annie

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Great info and very helpful from both of you!

It is rocephin that my docs and I are talking about.

My NY LLMD thinks I should be prepared to have it for many months-- like 6-8. I think he based that on the degree of neurological involvement I manifest.

I'd love to hear anyone else's perspectives, stories re: IV and how they manage it and what it requires.

Much appreciated. Y'all are amazing!

You've probably read this story a zillion times. I'm throwing it in because I was on IV for seven months with no improvement, and this is the abx combination that is finally working. I wish I'd known about combinations and co-infections BEFORE I went through the IV, as I would have made better use of it.

I'm honestly not sure how much difference in strength there is between omnicef and rocephin, and I'm totally in favor of using the strongest drugs available, but it also does seem like using a combination and hitting co-infections is equally important. And like everyone says, each person responds differently to abx. That said:

omnicef 300mg/2x day
ketek 400mg/2x day
rifampin 150mg/2x day (be absolutely sure you have bartonella if you consider adding this one in)
mepron 10ml/2x day
artemisinin 100mg/3x day
Chelated calcium, magnesium, and zinc (for some reason, this really helped me sleep, after years of insomnia)
Multivitamins, etc.

Also, I did take flagyl for many months. At first, it caused a constant herx. Now I not only don't take it, but am not even sure it was working on the Lyme--it seems to have a mildly suppressive effect on bartonella.

The gist of all this is that IV saves some people, but can also be a waste of time if you have other issues, or if the Lyme has switched to an L form or cyst form.

I've also had sudden relapses when I did yoga or aerobics and flushed some hidden Lyme into the open, even though I'm on a strong abx regimen. If I had been relying on IV when this happened, I'd have stopped taking abx the minute I was symptom free, and these mild exercise-induced relapses would have led right back to a full-blown relapse, instead of only lasting a week. So before you put up the money, make sure you've checked out all your options.

If you do use IV, please take Actigall so you won't end up part of the recent trend of gall bladder operations. And liver support is very important, also, when you use these strong abx.

[This message has been edited by liz28 (edited 27 June 2005).]

Thanks. No I haven't heard your story.

I've been dx with Babesia, Bartonella and lyme.

I've been on 2 and a half years of orals with some sx greatly improved, others continue at the same level and and still others notably much worse.

Are you really taking mepron, rifampin, ketek omnicef and artemesia all at the same time?! Whewf!

I've taken mepron zithro omni and septra at once---but I think rifampin and ketek and mepron are three seriously heavy hitters to use at once. Are you checking liver enzymes really regularly I hope?

Also I read a paper on Babesia that says that atovaquone (mepron) and rifampin aren't great to take together because one reduces the bio-availability of the other (forget which direction...I think rifampin makes mepron less used by your body).

You might want to ask your LLMD about that.

However, if I traveled a lot I would try to stay on orals if my stomch would allow it.

How long have you been on antibiotics? If you are just starting I would start with orals.

The infusions are no big deal. I tacked my bag onto the wall above my head. You learn to improvise while traveling. I even taped my bag to a boat oar that I propped upright once. You will manage.

IV Rocephin got me functional. I did relapse though because of a missed Babesiosis infection. Went back on Rocephin and Babs meds and gained lots of ground. Am now able to work a full day. But, the Babs is a bear to get rid of - wtill struggling with that.