Lyme Disease Support Group

My doctor has been wanting me to start IV antibiotics for a while because of my neurological issues & severe GI problems with oral antibiotics. I've been hesitant to do so because of some fears.

My first exposure to IV antibiotics was watching Under Our Skin and seeing the ranger splayed out as if he were dead with the tube stuck in his chest. That was a scary picture.

When I've been to the doctor's, some times there have been other patients receiving IV there that don't look much better. The bag is filled with a bright yellow substance that (pardon me) looks like urine.

I'm concerned about getting an infection at the site. He wants to have the permanent IV installed. I have a problem with perspiring a LOT and am concerned about being able to keep the site clean.

I've read here where some people have had problems having the IV port removed and have had to have it removed surgically.

I'm, to put it lightly, fed up with the neurological issues, but this procedure scares me.

Any feedback would be appreciated.

Thanks

I had a picc line inserted (thrugh my arm and into my chest) about 2 1/2 months ago to start IV meds after about 6 months on orals. I too have severe neurologic lyme.

I was sooo scared about having the picc line put in and then I was so scared about an infection and how I would feel on the IV meds.

I have to say that for me, it was the best decision I could have made. The picc procedure was not bad at all and while it was sore for a few days, now I dont even feel it. It have not had one problem with infection, but I do get bandage changes by a nurse specialist every week without fail.

While I'm nowhere near back to normal yet, I have seen some significant improvements since starting the IV. It has not been without its ups and downs, but month over month I've seen progress, where as before I was at a plateau.

If you've tried the orals and youre stuck, I would highly recommend the IV. My drs. said its the only think that will truly help the scary neurological symptoms.

Feel free to PM me if you'd like additional details.

Good luck to you! I'm here if you have questions.

Well, and about a million supplements.

She said I could do weekly IVs, a PICC, or a Port. But a Port is about double the cost and a surgical procedure.

I think I will likely get a PICC line. Good luck! Thanks for starting this conversation!

I am scared too but encouraged after reading the post from Laurie. Thanks Laurie!!

I also have a friend that is in remission that did 9 months of IV through a port and feels that that's what mostly got her there.

Fear is normal. But, these are small sacrifices, risks than the risk of not treating appropriately.

I'm more scared of my son having chronic lyme... so is his LLMD. So, NOT having the picc is more scarey than having it.

IV abx is the only way to kill the Bb in your spinal cord, brain, etc.

Try and trust your LLMD on this. Everyone I talk to about IV Abx says it's the thing that got them better. Makes a huge difference.

Oh, I was scared for nothing!

Actually I was upset on the day nurse came to pull the line (28 days course of Rocephin by my neurologist is up) because I wanted to keep it in and more Rocephin.

I was responding to it and saw the improvements. Now I am slowly slipping backward.

I hope my neurologist will order another round and have line put back in when I see him the next week after brain MRI later this week. If not, my LLMD may do it for me.

My insurance approved the coverage for ceftriaxone (generic for Rocephin) for the next ten years as long as I have someone prescribes it for me.

Post edited by: LilyRoses, at: 07/10/2012 04:37 PM

Glad you saw improvements but such a bummer your doc had to remove it so quickly!

Could you shower ok and use that arm normally?

Was the procedure to get in installed or removed uncomfortable for you?

Yes, I could shower with no problem. I would get myself medical-grade sleeve cover. It may be much easier to cover it than try to use plastic bag to cover it then duct taping it.

The medical-grade sleeve cover would allows one to swimming in the pool, and such. I had one when I have my entire arm in cast several years ago--too bad I didn't keep it. Duh me.

Yes, I could use the arm normally--at the beginning, it'll take some to get used to it, then you won't even notice it is there. Only thing I would be careful is lifting heavy objects, and make sure nothing rubs against it or get tangles with it.

The procedure to insert it--it is like get blood drawn.

The removal is much breeze--you dont even feel the tube coming out.

There is only two uncomfortable aspects--they involves the dressing changes.

1)The removal of clear sticky bandage is akin to taking bandaid off--it pulls hair from skin--so maybe shave or wax hair off beforehand may helps? Lol.

2)One may be a bit sensitive to chloraprep--it is cleansing solution--it always stingy for a few hours for me, then it went away. There is alternative-betadine with isopropyl alcohol. I read some people have allergy reaction to chloraprep and develop rashes but that did not happens to me.

Thanks for writing.

It sounds like yours was in your arm? My doctor wants to put mine line my chest because he expects it to be in a while.

Did you have to clean around it or anything? Like I said, I'm concerned about keeping it clean because I perspire so much.

You said it was like getting blood drawn - i understood that the thing was very long - someone said 2 feet. Are we talking about the same thing?