I have been on six abx in six months with minimal results and I had a late dx.

Would anyone be kind enough to share their experience with getting the picc line.
How painful is it to have for a several weeks or longer? Thank goodness it's cooler sweater weather now! Did anyone have any site infections? Was it a one time thing or more? And finally, did it help?

I did get a site infection once which turned into sepsis but that was due to incompetent nurses not catching it in time. (i'm not putting nurses down, this was a specific case).

But for the most part it isn't terrible, i had a bag that people wear over casts to take showers with, so that also was nice.

I really feel badly for you because I know what it's like to be in constant pain.

How long have you had Lyme? What are your other symptoms?

As far as the PICC line goes,I had mine in the arm for three months on IV Rocephin. Nothing to it. The hardest thing was taking a shower, which I managed with that new Cling Wrap stuff and a couple rubberbands.

If you decide to go that routem do yourself two favors beforehand:

1) Drink lots of water for a few days before you have the line put it. Always drink a lot of water before a blood test too; it puffs up the veins and makes it easier.

2) Shave the area of all surface hair before they insert. You'll be grateful when it comes to bandage changes.

The IV helped pull me over the hump I was in and I've gotten drastically better since then. You have to do it with an oral though, and you have to follow with orals.

Also, be sure to take your milk thistle to help prevent gall bladder problems later; and your probiotics.

As far as your headaches go, I've heard of others that have those problems with Lyme. I don't have the experience, but I know there is a doctor here in Cleveland at University Hospitals that is doing AMAZING things with migraines.

I can't recall his name at the moment, but through his work with facelifts, etc. he realized his patients were telling him that their faces looked great, and their migraines were going away. He discovered that depending on where the migraines surfaced; he could surgically cut certain areas and relieve the migraines.

His success rate is like 95% with no adverse effects thus far. Amazing, isn't it?

He's taking clinical trials now. The patient records their migraines for a month and then he does the surgery for FREE (because it's a clinical trial). My niece is in the study now.

I had a PICC line for six months two years ago for IV treatment. For me, it was hard to get put in because my veins are hard to find and branch off a lot so they had trouble getting the line in more than 4 or 5 inches. So, I had to go to the hospital and have a contrast dye used. It was very easy to take care of once I got used to it and it became just a part of my body.

For showering, there's a great product called xerosox that looks like a big rubber mitten. It's rubber (or something like it) and you put it on your arm, right up to a few inches above your line site. Then you squeeze a little bulb to get all the air out and it's an airtight seal. I found this to be better than any other product I found and it lasts for a really long time (I used mine for six months and it was still in perfect condition). I also used it to be able to swim but not everyone is comfortable doing this (I had no problems but only swam for 10 or 15 minutes at a time). You can get them at www.xerosox.com. I don't have anything to do with the company, I'm just a very satisfied customer.

Now I have a port in my chest which I really love but my treatment was more complicated this time around so a picc wouldn't have been a very good choice.

--Annie

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Mine is a PIC because the line only goes to mid way across my clavicle so it's not a central catheter but a peripherally inserted catheter.

The PIC line nurse came to my house, looked at my arm and said, "this shouldn't be a problem." The insertion was a lot like getting blood drawn except with a bigger needle.

It was sore for a few days but it is much better now. I wish I had shaved my arm before hand. The Tegaderm I have is 5 inches by 3.5 inches if that gives you an idea of how much the tape covers.

The first time i had was on IV i had to picc lines over a 3 month period.... I got 95% better but the moron dr I was seeing took me off to early and put me on orals so 3 days after I was off the IV ... I started getting sicker....

unfortunately by the time i found my llmd I could barely walk..

The second time I had two picc lines for over a year (zinthromax then rocephin then briefly clafaran) It helped some but i had so many various complications due to the lyme....

I never had an infection... and the pain was so minimal although the itching from the stiches drove me crazy for a couple weeks (eventually they will fall out.

I'm not trying to scare you but one time the picc was put into my heart....

I gradually had problems breathing and the home health nurses kept telling me atrophy.....

eventually there was pressure in my chest and i could not breathe well enuff to get off the bed.

I think i didnt tell my llmd till it was real bad....my llmd told me to get it acessed and I did ...it was in my heart....

we had to argue with the picc line dr people for them to move it because they said it being in the heart doesnt cause problems -BS!!!!!

as soon as they moved it I started feeling better!!!!!

Moral of story if you get chest discomfort or breathing problems (which u problaly wont I've never heard of anyone else this happened to -lucky me ) tell ur llmd immediately

also other things to remember with a picc line .... keep it dry ... it can get infected if you get it wet.

keep a net, piece of stocking or sock over it ... it needs to be snug and secure.

I'm sure it will be ok.... it really did help me alot... I just had alot of bad luck for over a year.

If you are going on rocephin remember that it can cause gullbladder issues (stones) so if you get pain under your right ribcage tell ur llmd.

Best wishes

I am still not sure WHEN this is going to happen...I need to find a Dr. in my state to coordinate with my LLMD and don't know what my insurance company will do.

Nancy-I suspect that I have had Lyme for at least 14 years and was just diagnosed 6 months ago.

I have had chronic fatigue, was diagnosed with fibromyalgia (lots of pain all over), depression, migraines, neuro-cognitive (word finding, memory, concentration, dyslexia, spelling, confusion), bladder problems, menstrual problems, anxiety, and now I am beginning to have severe irritability and rage although I have always been very even tempered and a bit passive. Those are the things I can remember anyway...lol. What about yourself?

Annie-I will definately be getting a Xerosox. I do like to swim when I drag myself out of the house and to the gym occasionally. Thanks for that info.

Team Mom-I really don't know anything about ports. I honestly haven't even heard about them but I will ask my LLMD.