Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, I have finally decided to try the antibiotics. I am trying to find another LLMD who is closer to me and think I may have located one whom I hope I will trust (I think that is very important). I had some stress recently and the fatigue is coming back as well as the weird heart beats/tachycardia and I'm just tired of it!
Now I will probably start on orals (I have a bottle of Omnicef from my other LLMD but don't want to do that due to all the reported gut issues from that particular med).
However, I am very interested in iv route because it's stronger (yes I watched Under Our Skin and it made me decide to try abx).
Has everyone who has taken IV meds gotten a picc?
I'm an RN and would be more than willing to start IV's on myself and keep it in a heplock for as long as the line stays patent. I am concerned about sepsis with a picc plus the cost of the line insertion.
Has anyone used regular old venous administration?
Thanks! Ocean
Posts: 1624 | From Ohio | Registered: Jan 2003
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posted
You wouldn't want to use the old heplock IV cuz it's just a needle IV. Short needle IV directly into a vein in the more distal part of your arm and often taped to the back of your hand. Heplocks are called such, due to the constant need to flush with heparin every eight hours. Now I think they call em MEDLOCKS.
With this type of IV, there is no protection for your vein(s), so you cant really inject any hypertonic solutions in it, or you'll irritate the vein.
These IV's need to be changed every 2-3 days, and wouldnt save you much needle sticking in teh long run. Since IV abx therapy for Lyme will last a couple months - 1 year, you want a more long term solution for your IV.
Therefore they have mid-line cathetors, but they only have about 8inches or so of tubing to protect your veins from hypertonic solutions being injected. These will last over a month, but only about 5-6 wks. So eventually, they too will be painful and cause damage to your veins after a month or more of injections.
I think it basically hurts too.? When you dont have the protection of a long cathetor.
The blood is aprox .89% saline solution as far as the plasma (liquid component with clotting factors intact.) goes, so your kinda limited to what you can inject.
I have a picc line, and they give me saline at a .9% solution. This is hypertonic to my blood, so after a while the osmostic pressure caused by it's presence in the vein WOULD cause it to "spasm" and possibly, eventually collapse. At least becomes very irritated and damages the vein permanently. Plus it's painful during the actual injection.
The picc line is far superior for longer term IV access because it's tubing protects like a sheath right up to the inferior vena cava. This is very close to and basically empties right into the atrium of your heart.
W/ the picc's you do keep the lines un-clamped, so there is some infection risk, but if you want something less likely to get infected then a CVC may be what you want? Look up "Groshong" CVC's? Those are kept clamped off, so get infected less. Those are for use over 1 year.
Infection is mostly due to patient error anyway. Unlesss you're immuno-compromised? Gotta be very thorough about cleaning/flushing I guess?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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TO LIFE
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posted
Hi Ocean,
Like you, I was afraid of sepsis as well. I also have fragile skin and the picc. is something I refused.
I also wanted to keep active as much as possiable.
I had a RN come to my home everyday for over 5 months of IV Rocephin.
I had regular venous administration, with butterfly needle. If I have to have more IV's this is the way I would go again.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks James and Roz,
I know that the picc line in much better in terms of long use application. However with my anxiety, I don't think I could handle it, anxiety is MUCH better than last fall, but I think I would freak out about a picc.
When I was feeling pretty good a few years ago I worked in a NICU and not all of our babies had a central line (all the 23-27 weekers did though, usually through the umbilical cord line) and still got quite a few antibiotics, true the line would only last a few days, but it worked.
Roz,
Thanks for your story as well, if I am allowed to get an IV I would much rather do a basic IV. I'm assuming they would let me care for it (I hope) unless insurance is going to cover the cost of a home health nurse!
posted
I'm only on my 3rd week: IV rocephin at only 1 gram/day.
So i'm just starting do build up a more solid herx.
I noticed that IV rocephin brings that sense of fatigue in it's "herx profile".
I think it helps me to tire and get to sleep. Along w/ anti-anxiety medication.
I definitely sleep a little better since.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks for the update James! Glad you are sleeping better, that's important for recovery.
I am looking forward to my new LLMD appointment (still deciding between 2 doctors, made one appointment for 6 weeks, but may cancel if I choose the other doc).
ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Hi. I am on my 4th picc line, and I have each in for a year each. They do marvel at my veins. I did not want a port, and I have personally had no issues with the picc line. I am used to it now for IV doxy and IVIG.
It is always a bit stressful having them put in, but I just don't look at the process.
Di
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Tincup!
Oh my...that is scary...eek!!! Now when I was well enough to work we only had a couple of central lines that went bad, but the babies only had them for a couple of months. One was a broviac line and it looked really bad, I took care of the baby the night before he was to have it out, poor thing! Are you on IV meds right now?
Di,
Wow, that is really good that you've been able to keep them in for that long each time, you must have iron veins!!
I can imagine it would feel weird getting one in, I know a few people who've had them (not for Lyme).
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Tracy, Yeah for you!!! IV finally! That's good news =)
Sorry that you had so much pain and still are having pain. I have no experience so can't say if it's normal or what.
posted
My husband has had a central line (groshong) for a year now. He's made great progress on IV antibiotics that he just didn't make on orals and we haven't had any problems with the line (knocking on wood here!).
Posts: 984 | From San Diego | Registered: Nov 2006
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I just finished 3 months of Rocephin without a PICC line and it was pretty much a piece of cake (another than a little anaphylactic reaction last week which forced me to discontinue the Rocephin...darn!)
My doc likes to use peripheral lines which worked out great for me. A nurse would come to my home once a week and insert a catheter into my arm. I would then hook up the IV's meds twice a day for four days. I removed the catheter myself on the fourth day and took 3 days off. (Three blissful days of showers!)
I followed this routine every week....4 days on, 3 days off. The pharmaceutical company I used provide the Rocephin in little "ball pumps" that infused themselves in about 30 minutes...no gravity required, so no IV poles, etc. It was so easy to do. They provided everything I needed for flushing, etc.
I found it really easy to take a bath with the peripheral line since it was so small....I could usually cover it with a diswashing glove. (Most weeks it was inserted on the lower portion of my arm.) I always made sure I was really well hydrated before the nurse came for insertion...it was much easier for her to get the line in then.
Good luck with whatever you decide!
Posts: 345 | From East Coast | Registered: Apr 2008
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I had home health care EVERYDAY for several months. It's the insurance companies, that don't want to pay for regular venous administration, with butterfly needles.
If you have an RN like I did this is the way to go. It didn't hurt at all. My LLMD fought for me, to have this treatment this way.
I was also concerned about more cell damage, due to a pick line.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
So getting poked with a needle every day is more expensive??? That is what I would prefer to do, if it's possible.
I wonder if I volunteer to go to the hospital everyday to get my infusion done, which I don't mind doing since I live really close to it, if in that case they would let me get pricked daily instead of having a picc?
Hmmm.
Does anyone have an opinion on if it's bad for our health (fragile immunity, susceptibility to viruses, etc) to go to a hospital everyday?
Anyways, these are all just thoughts........
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hi Hoosier,
A butterfly needle is a very small gauage. The venous administration was done where the needle was just a little in my vein. Usually done at my hand, or a couple inches down my wrist.
When my RN was done it looked no more than a little pin hole. She WAS very good.
I had this done with Rocephin, for over 5 months.
IV Vanco. has to be IV'ed. I used the small plastic sticks for that, that Tincup is talking about.
I am just a hairdresser, but maybe Ocean could explain better. Much Love, Roz
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