posted
IV Treatment is being considered for me, and I don't know much about it. I was wondering if people could share how it worked for them.
How long did it take till you had improvement?
Does everybody have to have a port put in? Can an IV just be put in for a week or so at a time instead?
Would just like some more info on other peoples experiences! I know we all react differently, but any thoughts are welcome.
Posts: 114 | From USA | Registered: Sep 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had a picc line in my arm for 6 1/2 months, until a blood culture found fungal growth so it was pulled.
I saw significant improvement after 4 1/2 months. I was also on Ketek and then Doxy while on the IV (which was 2 gms rocephin, 3 days on, 1 day off.)
I'm glad I did the IV. I think it helped clear my brain and CNS symptoms. They aren't gone, but are much improved.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there blackbird,
For me a picc line was much less painful and more stable than having temps.
It must be kept clean and dry under the clear bandage as best can be to prevent rashes.
Good luck........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I had a PICC line placed 6.5 months ago and am still going strong. A mid-line might be a reasonable option, but I was told they only last 2-4 weeks. If you are anticipating infusions longer than one month, I would go with a PICC line. It may be helpful to talk to the people who place the lines and get their opinion on what they think would be best for your situation.
As far as progress goes, mine has been slow (which is pretty typical for acute Lyme). I infused Rocephin for 5.5 months, Doxy & Rocephin for one month, and will start Zithromax this week.
Good luck,
Tiff
Posts: 5 | From Utah | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
there is much debate over the issue of IV vs. ORALS. For long term treatment and chronic lyme. Many people who had IV treatment for lyme in the past are now relapsing. I am one of those people.
Current thinking is that coinfections were not properly treated. Too much emphasis on neuro lyme and not on the conifections?
IV plus months of orals gave me my life back for 4 years until I relapsed. I would do it again though, coz 4 years is better than none. Posts: 1950 | From New Mexico | Registered: Sep 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
If you have any more info about what your IV treatment will entail that might help us (or at least me) offer advice or suggestions about lines. Mainly, the things that would be helpful to know are: 1) would you be infusing everyday or pulsing with some days off each week? 2) how long would you be on the IVs (at least as a starting point)?
posted
Thank you all for the replys. I looked at the link and it really answered questions on what a line might be like. That honestly freaks me out a bit, and I am not sure if I would handle it well emotionally and somewhat physically.
I think if we go to IV it would be pulsed, we have to discuss it at my next appointment. Like a week on, and than time off. I was wondering if a more regular IV would be safe to do. Like the type you get if you are in the hospital for a few days. My mother used to be a nurse and can put IVs in, take them out. With that I was wondering if I could have one of those put in at the hospital and taken out there. With my mother around to keep an eye on it, I would think it would help.
Can IV be mixed with orals? Or is one or the other? I am so new to the IV idea for me, and have the feeling it will come to that since I have been ill for so many years. Lots to ask my doctor at the next appointment!
For those of you on the IV...how has being hooked up changed your life? Going out places, dressing, showering, and everday activities, even sleeping. I worry some about the affect it would have on my life. I like that I get to look "normal" despite being really sick. I may need to just get over that real fast, and get used to something being in my arm, if it comes to that.
Thanks!
Posts: 114 | From USA | Registered: Sep 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
It largely depends on your llmd...
Some like to pulse and some like two kinds of IV infusion and some like to do orals with the IV.
Personally I have always had daily infusion with an oral like metronidazol(flagyl).
As far as your social life is concerned...while my picc was in my left arm and I got better...I was able to bowl and hang waqllpaper and paint with the picc in my arm.
You have to wrap it up when showering or bathing.
Keep the sleeve on and I might suggest you get them to put an extension on the infusion line to make it easier for you to do your own infusions.
We all seem to relapse but I do believe it's a necessity...especially when neuro lyme is an issue.
Getting stuck every day or whatever does'nt sound like a really good idea.
Your choice....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
zman, thanks for the info. It sounds like it is possible to lead a fairly normal life with the picc line in place, so long as you take the time to make sure it is covered. Thank you for the added info!
Posts: 114 | From USA | Registered: Sep 2005
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Just make sure you are treating co-infections if you are going to do IV.
It is ok to continue orals while on abx.
I was able to hide my PICC because I had it in during the winter. Just didn't wear shirts that were tight in the sleeves.
For some people, having the PICC line is no big deal. It did end up changing my life, I could only sleep on my back, it was hard to be intimate with my S.O., taking showers was a pain because I had to do it one-handed.
I work at home so doing the infusions wasn't a big deal. I got a pump so I could work while I infused.
The PICC gave me phlebitis (vein irritated in one spot), so I wasn't able to do much with my left arm.
Make sure you keep the insertion site clean and dry and that whoever changes the dressing knows what she's doing. I found that I had to tell the nurses what to do. I'm glad your mother can help you.
Also, check the length of the line to make sure it hasn't moved into or out of your arm more than 1-2 cm.
I'm not sure if taking a whole week off at a time is a good idea, that might be too much. I did 5 days on/2 days off of rocephin. It did give me yeast and GI problems, so be careful with that.
Good luck, P
Posts: 449 | From Vermont | Registered: Nov 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
If you'll be pulsing the IVs, you may want to consider an alternative to a PICC line. You had asked earlier about temporary lines which would work if you have good veins and would be pulsing on a schedule that left you with more than just a day or two off at a time (like if you did 4 days on, 3 days off a week). Or, you may want to consider the slightly more involved IV line of a port-a-cath which allows you to de-access (take the needle out) during the "off" days and be completely free to do whatever you want. Just things to think about (and that's why I asked about whether you'd be pulsing or not).
Here are some places with info about Ports, PICCs, and other IV lines:
posted
I would try a combined approach of oral antibiotics & nutrition supplements through a knowledgeable doc. There's a doc in MO who uses this approach and a number of others. I admit to being prejudiced against IV since my daughter nearly died from an IV catheter infection. But in addition to that, she has advanced Lyme and has done best when being treated by a doc who uses a combined oral antibiotic/focused nutritional supplement treatment. She returned to that type of treatment after her IV crisis and is better than she has been in well over a year. I am no doctor and don't presume to tell you what to do. You have to follow your own judgement.
-------------------- DottieD Posts: 6 | From Tallahassee, FL, USA | Registered: Feb 2005
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liz28
Unregistered
posted
I found it was highly effective on Lyme itself, but useless if you also have co-infections. The Lyme just came right back when I stopped the IV.
As I started treating the co-infections, I responded well to omnicef, a slightly weaker version of rocephin, paired with ketek, the strongest macrolide. I also did some pulsed flagyl. I was disabled with little improvement for four years, started this treatment 1 1/2 years ago along with bart and babs abx, and haven't had Lyme or bart symptoms for about three months.
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posted
I found out we would pulse with four days on and three days off for several months. I need to go through all of those links to learn more (thank you Annie!). Yes, this is a bit overwhelming. My case is pretty bad, so the IV should really make a difference. We will be treating co-infections too.
We found out I may have a parasite from some indicators in recent tests. So that has to be further explored, but we believe its in my blood not in the gut due to a normal upper and lower scope. I wonder if it's babesia?
Gonna go look through all the links and learn more...Thank you everybody!!
Posts: 114 | From USA | Registered: Sep 2005
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posted
I read the links and am really realizing a persons veins might not hold up to being stuck four times a week for several months. Has anybody had an IV put in their arm and left for four days and taken out? Like the kind you have in the hospital?
Still feeling overwhelmed, but it helps to see the pictures and know more. Gonna have to think on this for a few more days.
Posts: 114 | From USA | Registered: Sep 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
When I mentioned the temporary lines I meant that you could leave them in and not be stuck everyday. Temporary lines can stay in for up to a week or so before needing to be taken out and/or changed. Glad you're thinking about this and really giving it consideration instead of just jumping in blindly.
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