I am really hoping the community can give me some insight into the direction of my treatment.
I had a PICC line placed in October. Initially, my dr only intended that it be in for 1 months- as that was as long as my insurance would approve IV treatment. However, I saw no improvement and made the decision to self finance additional care. Now every month I am faced with a decision- to pay for another month of IV, or not.
I am happy to say that almost 6 months in I have seen improvement. I would say i am 80% of my old self. However, my doctor isn't much help on when I should stop.
When i got the PICC placed, I casually asked the tech how long the lines were good for and I was told 6 months. I really don't like the idea of having to have it removed and replaced.
I am wondering
1. For those of you long term IV-ers. How long did your line last 2. Any advice on making a determination to stop or keep going with the IV?
I am seeing improvements- but also side effects from so many abx. I have ulcers from the oral doxy and now have terrible problems with yeast infections despite intense probiotics.
Is there a threshold that I will cross where the side-effects will outweight the gains? What would be an indication, or a guide fo r this.
I am curious when other people decided to stop.
Thank you
Posts: 4 | From Brooklyn | Registered: Feb 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sending you a pm.
Posts: 2888 | From USA | Registered: Mar 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My Dr told me you could keep a PICC for many months..some as long as 2 years.
Was it a peripheral line (in your forarm) or a PICC (in your upper arm)?
Posts: 1276 | From maryland | Registered: Jan 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
The reason that they want you to replace it every 6 months is to prevent biofilm or scar tissue buildup around the line.
However, I had the same PICC line in for a year without any trouble (this was a couple years ago).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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gmb
Unregistered
posted
I've had the same picc line since December 2011. 13 months on Rocephin, then the last 10 weeks on IV Doxy.
I had made good progress in the last 4 to 5 months and feel I've plateaued, Tomorrow is my last IV dose and they pull the PICC on Monday am.
Babs remains my biggest challenge and also just stopped Mepron/Zith to try Sida Acuta and Cryptolepis herbs.
I can't recommend how long to stay with the IV, but if you have severe neuro symptoms Dr B recommends at least one year.
posted
I've had my picc line in now for 13 months straight, no problems with it.
I'm on iv vancomycin, aand it will be pulled in 1-2 months. I've done iv rocephin, doxy, and clindamycin also and I barely improved, still sick as ever.
Doc says maybe by stopping the iv's my body will rest and detox and I may feel better, but I'm not holding my breath, nothing is working for me at this point.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
gmb Wow, 15 months is a long time. How do you know you have plateaued? How many months have you remained with out progress?
Any reason you switched to the doxy?
Posts: 4 | From Brooklyn | Registered: Feb 2013
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Although by usual standards, it's unusual, some Lyme patients keep their PICC for a couple of years.
Yes, it can take a long time on IV to get better; it's not a quick fix, but a lot quicker than orals for many.
One thing to note: it's not well-known, but if you get your IV abx from Infuserve in FL, they will bill your insurance company for you if you ask----under Major Medical.
Many insurance companies do cover it, even though they deny you authorization for IV beyond 28 days. If you ask them ahead of time, they will say, no. But in actual fact, many do cover it this way (although there is no guarantee).
You may have to have the insurance co reprocess it, if they don't cover enough of it right away, but it's well worth a try.
Posts: 3771 | From around | Registered: Mar 2008
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gmb
Unregistered
posted
norahh,
I think I plateaued because after over a year on IV Rocephin I was feeling pretty good, but still not 100%. After a few months without any significant changes, we needed to do something new.
My LLMD switched to IV Doxy cause it works differently and to see how I react (back slide, herx, or improve). We discussed IV Clindamysin, but she was recommending infusions three times a day, but I have to work full time so that was out.
I do count my blessings for RI law requiring insurance payment for all lyme treatment as long as recommended by the Dr.
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I had mine for two years. And that was one year too long. Got a DVT. You should not keep a Picc longer than one year.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
I had mine for 18 months, no problems. Long term IV halted my ALS type symptoms, am maintaining/finishing up I hope on amoxy/tindamax, feel 90% or better most of the time. Good luck
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
In Dr. B's guidelines, he says to IV until there is significant improvement, then can try orals.
Posts: 143 | From Louisville KY | Registered: May 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
If you are going to have a PICC longer than a year, you should just get a port.
Posts: 1104 | From N.California | Registered: Jan 2008
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gmb
Unregistered
posted
Trouble is... I don't think any of us who agreed to start IV treatment ever thought it would last more than a year.
posted
I think one year is pushing it. You get scarring and fibrin growths around the line. You also run the chance of infections and DVT's (clots).
Remember, since PICC lines run to your heart you need to be vigilant in keeping the site dry and clean.
Inserting PICC lines has become routine so if you needed to continue therapy, changing arms for PICC insertion after six months to one year should not be an issue.
Be well,
Thewino
-------------------- Wrinkles only go where the smiles have been --J. Buffett
All of my replies should not be taken as medical advice as they are my opinions only and I am not a physician. Posts: 55 | From Florida | Registered: Oct 2012
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