I am new to this forum and have a question about a PICC line. I have had lots of neurological symptoms starting in March 2008 including vertigo, brain fog, fatigue, body aches, and muscle twitches. I finally got diagnosed with Lyme in October 2008 and started oral antibiotics. Since then I feel like I have gotten worse I am considering doing IV antibiotics with a PICC line.
I want hear some feedback from people who have done this treatment and any complications they had associated with the PICC line. I am trying to decide if risk is worth it.
Thanks so much
[ 01-29-2009, 11:15 PM: Message edited by: LLYME ]
Posted by mazou (Member # 15319) on :
I think it is absolutely worth it. The benefits far outweighed the problems, for me at least. I did have to stop one month early because of irritation to the SVC, but the problem cleared up in a few days.
Good luck.
Posted by savebabe (Member # 9847) on :
It is worth it, but you have to address co-infections first. Usually llmd's hit babs before they go full force after the lyme, or else you are prone to relapses.
Posted by TO LIFE (Member # 12371) on :
Hi Their,
I got IV antibiotics WITHOUT a picc line.
Posted by LLYME (Member # 18687) on :
Hi To Life, Did you get daily injections then?
Posted by zil (Member # 12048) on :
I've had a PICC line in for a few months and have had no problems.
Posted by TO LIFE (Member # 12371) on :
Hi Again,
I had home health care. I had a RN come to my home and give me the IV's EVERY DAY.
I did not want any picc line, the last thing I needed was another type of infection.
My LYME MD fought for me, with the insurance.
Hugs, Roz
Posted by Rianna (Member # 11038) on :
I have a PICC line and give my own infusions, had a hickman before and hated it!!!
I personally think a PICC is necessary for longer term AB's
As previously stated along with IV you MUST treat co-infections and Detox hard
Rianna
Posted by dmc (Member # 5102) on :
I had a PICC line and IV for 4 months. I infused at home 2X day. Hospital put line in (out-patient surgery) using a "X-ray" thing to make sure all okay.
Years ago had a midline put in by a home visiting nurse. Midline is a line put in elbow crook (where blood usually gets drawn) and internally up to shoulder area.
Now that I had a PICC put in, I prefer the PICC.
Best wishes.
Posted by TO LIFE (Member # 12371) on :
I was on IV MEDS FOR SEVERAL MONTHS.
Posted by TO LIFE (Member # 12371) on :
Rianna,
On a serious note why do you think it is necessary?
Hugs, Roz
Posted by soleil16 (Member # 16326) on :
For those of you who say it is worth it, how long did you try oral abx before you started the IV? Is there any reason to try oral abx long term before starting IV?
Posted by sutherngrl (Member # 16270) on :
All the people I know that have been completely cured or stayed in remission have done it on orals. Why would you want to do a picc line this soon into treatment?
Posted by LLYME (Member # 18687) on :
quote:Originally posted by sutherngrl: All the people I know that have been completely cured or stayed in remission have done it on orals. Why would you want to do a picc line this soon into treatment?
I have gotten so bad I am on short term disability. So time is of the essence, I have to be well enough to work in 6 months or I will lose my job. I was told the PICC line and IV antibiotics is the faster approach.
I have also heard of all the risks of a picc line like blood clots, etc.
Posted by ByronSBell 2007 (Member # 11496) on :
I would go for it, it is kinda freaky at first but you get use to it within about 4 days.
I did oral abx for over a year with little to no improvement, actually alot of things got worse.
Since you have neuro stuff, it would be important to do IV's since you can get to the brain/nerves better than orals can.
THe only negative to a picc line is having one arm almost useless and the herxes on IV's a a little stronger. I've been on IV's for a hair over 7 months now and can still fly into a herx storm everynow and then. I am doing better though, just slowly.
Posted by fushiacat (Member # 13165) on :
For those of you using the IVs, did you have trouble getting your insurance to approve it? We have CVS Caremark, has anyone had luck getting them to approve it?
Thanks
Posted by Rianna (Member # 11038) on :
quote:Originally posted by TO LIFE: Rianna, On a serious note why do you think it is necessary? Hugs, Roz
Hi Roz,
A PICC as you know is for longer IV treatments so you dont have to be cannulated every week or day. I have mine situated in my arm so I can do my own infusions and I honestly forget its there most of the time. You can then be taught to infuse yourself as with a Venflon/tempory cannula you have to have a nurse do this. It therefore gives me total self care management as I do all of this at home.
A PICC is also very quick to fit wheras my hickman took 3 hours!!!! My Hickman also got infected quickly as a nurse was seeing to it wheras with my PICC I do it - so my bugs are my own wheras a nurses bugs are everyone elses + hers
As I say I had a hickman before and HATED it, it was intrusive and difficult in every way, its just not nice to see a line coming out of your chest, especially for a women.
Hope that answers your question
X Rianna
Posted by Rianna (Member # 11038) on :
quote:Originally posted by fushiacat: For those of you using the IVs, did you have trouble getting your insurance to approve it?
I am totally self funded as here in the UK neither the NHS or private medical covers IV lyme treatment.
Rianna
Posted by ladycakes (Member # 12619) on :
Getting IV antibiotics was the very best thing I ever did.
I was sick for about 6 years. I did 6 months of oral antibiotics and had some small improvement. 4 months on IV was a HUGE improvement. Afterward, the only symptom I was still really bothered by was fatigue.
I've been on oral antibiotics for the past 6 months, no symptoms for the past four, and have been off of antibiotics for the past month.
I feel fantastic! I'm playing ice hockey, where a year and a half ago I could hardly get off of the couch.
I had some minor issues with mine, but nothing life-threatening, and my insurance (not a big name one) covered all of it.
Posted by Firefly (Member # 18353) on :
how long are they saying you can leave the picc line in for?
Posted by Tracy9 (Member # 7521) on :
Today they told me six months to a year.
Posted by mookiewill (Member # 14743) on :
I have no PICC issues at week 8. Don't feel it.
Posted by Kreynolds (Member # 15117) on :
Go for it.... This is my 2nd PICC had it in for 6 months no issues.... Its a no brainer!!!!
Posted by ebbakarin (Member # 16362) on :
I never tried orals before I went straight to a PICC owing to major neuro problems. Even IDSA suggests an IV can be useful in this case. 4 months in and I feel great; can't imagine it would have happened without it. At this point there are still no problems and the whole affair is more of a hassle than anything else (though I was really freaked out the day before I got it. Don't worry!) One thing to consider is the extra cost, since after the cost of insertion the dressing supplies and meds can get expensive. My doctor told me to expect between 6-12 months, though I'm looking at 6 right now. Yahoo!
![[Big Grin]](biggrin.gif)
I am doing better though, just slowly.