My LLMD has suggested that I can go the IV route in order to cross the BBB, as well as make my course of treatment substantially shorter. The oppportunity to shorten the treatment time frame is quite attractive.
However, I have a great amount of fear of the PICC line and the IV process. If anyone has any words of comfort (or warning), I would be very interested to hear them. I'm also going to review old posts, as I'm sure others have expressed the same fears.
Posted by annier1071 (Member # 28977) on :
I am about to get a picc line also and start IV rocephin. I have the same fears, but I see everyone on here who used the iv therapy had good results.
My LLMD is sending me to a friend of his that sedates you for the picc line since I have very tiny veins. He says he has never had one problem or complaint about the picc line or chest port implantation, so I will trust him.
Posted by dmc (Member # 5102) on :
You should get the PICC inserted by an Interventional Radiologist with a X-ray camera during the procedure. That is the only way anyone should get one placed.
By a nurse or just any ole' doc, not in a surgery type setting, is inhumane & dangerous.
That said, under that scenerio it a "piece of cake".
Posted by blinkie (Member # 14470) on :
I wish I had done it sooner. That's all I'm gonna say.
Posted by WIGGY (Member # 15377) on :
I was dreading the picc line so much that did orals
for 2 years until I said have to try picc and
it has not been bad - much better than expected.
I got my picc done just as dmc says above.
Posted by Abxnomore (Member # 18936) on :
Having a picc line put in is usually not a big deal. I don't think you should worry. Doing the IV is not a big deal either. You will get the hang of it in no time.
I had two put in at my LLMD's office with no problem. One by a home nurse service in my home and one in a hospital. All done without a hitch. And removal is a breeze. They just gently pull it out and you don't feel a thing.
Most importantly is that the ABX will be passing the BBB and hopefully you will have a good improvement.
Good luck to you all.
Posted by Abxnomore (Member # 18936) on :
Hi Annier, this is very good news that everything is set up. I know you were very unsure about your LLMD and his office but it seems that he has come thru for you. I'm not surprised and I'm also glad to hear this good news.
Posted by triathletelymie (Member # 26456) on :
I, for one, was REALLY nervous about getting my picc line! As a matter of fact, I would go as far as to say...I WAS TERRIFIED!
Well, I have had it for four months so far and no issues, what-so-ever with it. The first 48 hours, though, after it was inserted, I had some pretty major pain at the site. It is stitched in, though, and that contributed to it, I think.
I have had no issues (knock on wood!) with any infections...those that had me totally paranoid reading about it prior to getting the picc line. Just be conscious of all of the "signs" of trouble...bleeding at the site, problems with infusing, fever, etc.
Good luck with it! Remember, I was probably one of the most nervous folks on the planet about getting it. So far, it has been a piece of cake! Posted by mbdq (Member # 26277) on :
I had a PICC for 8 months. It was a very important part of my treatment plan.
Here is a post I wrote in Dec 2010 about tips from having the picc line in:
Here are some tips I learned from having my picc:
1) A good cover I found for showering is by XeroSox. www.xerosox.com Works great for quick showers and dips in the pool, while holding arm overhead for most of the time. Does not work well submerged in a bath tub or hot tub. They are tight when you put them on- I used baby powder to help it slide on and that was a godsend.
2) I liked to cover my picc with these socks called Ovation Zocks- (google them) which I just snipped the end off of. They were great for the summertime- light, stayed in place, gave excellent coverage compared to regular socks, tube bandaging, etc. Plus the patterns are fun- might as well have some joy in your day while fighting the nasty buggers right? Sorry the patterns probably don't apply to the men out there.
3) When I increased my Omega 3 dosage to 2g/day, my insertion site bled a bit more. When I decreased the dosage, the bleeding stopped.
4) When I took Transfer Factor to help with my WBC count, it caused an immune reaction and pus came out of my picc insertion site. Scary....and I was able to get dressing changed same day and this was the only time it happened.
5) If my arm got itchy around the dressing, I carefully sprayed a light coating of Benedryl spray around the dressing- this helped.
6) I found my arm liked it best if my stat lock was changed every two weeks instead of every week. If changed each week (for me) my insertion site bled more.
7) I also needed to keep my stat lock very close to its original position and not let it "wander" too much. One time, a nurse moved it over about an inch and the line just pulled on the hole all the time and I bled like a stuck pig.
8) I have just learned that you are apparently not supposed to take blood via your picc line, although this is how my nurse did it each week. Oops.
9) If my arm got a little warm or swollen, I iced it. If it got twitchy and tight, I applied light heat.
10) Despite initially being careful with my picc, most of time I forgot it was there. As I got better, I was able to do full pilates classes, ride my horse, and muck stalls with no issues.
Good luck to everyone out there with their lines and treatment. I know I was lucky to get an 8 month run in with no issues. I hope this helps!!!
Posted by ladycakes (Member # 12619) on :
It's not so scary, I'm getting one put in on Tuesday (this'll be my fourth line).
Posted by sfcharm (Member # 9392) on :
I had a groshong catheter put in my chest by a vascular surgeon associted with the same hospital as my Lyme Dr.
It was by far the way to go after having done Bicillin shots for six months and orals for a year. I was on Rocephin for one full year. I had a two year remission period but am back now treating lyme again.
This time I am hoping the orals do it. I am on heavy duty doses and not nearly as sick as I was when I chose to go the IV route.
Overall I think the IV was easier than remembering to take mega doses of pills every day. Just keep your site clean and sterile.
Posted by 2young2die (Member # 25434) on :
I had a picc for 8 months. The dressing adheshive gave me alot of trouble but eventually I found the OpSite 3000 and it worked great. If a rash developed around the edge of the dressing, I would trim it back and put neosporin on it.
I did develop a staph infection in the line and it had to be pulled. It started with diahrrea and severe fatigue. I then developed a fever so the line had to be pulled.
I still have diahrrea a month later and am going for a GI scope/colonoscopy in a few days. I was on rocephin for 10 months.
Posted by finallyhope (Member # 21389) on :
I am getting a picc line on Monday. The hospital does not give the 1st dose of antibiotics. I finally found a Home Care that will give me my first dose at home. I have had to set everything up myself, my doctor does not do this for patients. It took me a while to finally find a hospital who would put a picc line in. The hospital is 2 and a half hours away. There were not any hospitals or Dr's in my area that would put it in due to it being for lyme disease. I am worried that if I get a blood clot or infection that the line will be pulled and I will have to drive almost 3 hours to have another one inserted not sure if insurance will pay for more than one picc. Thank you to Mbdq for all of the helpful information.
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