Just wondering how many of you out there have done IV abx? what made your LLMD want to do IV with you and what were the results?
Did you feel like you turned a huge corner? How long into treatment did you start IV?
I am asking because my LLMD said that I can do IV if I want but I am scared. I want to do it if it will make me better faster but I am really scared of the herxing because I herx enough on orals!
Posted by BackinStOlaf (Member # 23725) on :
I am in the same boat. On orals for 7 months and still have symptoms and a low cd57. I'm scared of infection at the site of the IV etc..I'd love to hear opinions too.
Posted by kimmie (Member # 25547) on :
I did IV from the start for neuroborreliosis, they would have given me doxy but I am allergic so went on rocephin with improvement. Did 1 month and switched to oral zith and omnicef and crashed.
Had another PICC placed May 28 and did 4 months of IV rocephin, IV zith and oral flagyl. It was tough, but I have turned the corner. Not in remission but greatly improved.
Posted by dmc (Member # 5102) on :
I did orals for 6 yrs then Tigecyl was FDA approved...my llmd sent me to llneuro to get it.
CT has law that ins. must pay for extended treatment if rxd by neuro, reumi, or id doc.
Did 4 mons (at full dose 7 days week) and off abxs for over a yr. I had MS type lyme.
Posted by triathletelymie (Member # 26456) on :
My LLMD opted for IV because I have all neuro-lyme, not much joint pain or fatigue. I tried orals for 6 months with no improvement. I was also grossly CDC positive, too, with multiple bands positive. I had a picc line placed 6 weeks ago and I, too, was scared! For the first 24-48 hours, my arm was in excruciating pain...not discomfort, but PAIN!!! That has subsided, for the most part, and I barely notice the picc anymore. Occasionally, I will feel a twinge of minor pain/discomfort, but that has been rare past the first week. It's really not that bad.
The biggest annoyance that I have with the picc line is not getting it wet. I wrap it with a plastic newspaper bag and then cover it with plastic wrap anchored with rubber bands. That has worked so far, although washing my hair in the shower with only one hand is a bit of a challenge (and, I'm sure, kind of comical looking too!).
It was put in by a radiologist in a hospital. They wanted to put it in my right arm, since it was a more "direct" route. Since I am right handed, I asked if they could use the left arm, which they did. That was a wise move, I think.
I am pretty particular about keeping it dry, clean, etc. and the visiting nurses that come to change my dressing every week always comment about how good it looks...clean, dry, etc.
As far as improvement, well, that has been a bit disappointing. I have seen MAYBE a hair of improvement, but nothing dramatic.
If you have any other questions, feel free to PM me.
Good luck!
Posted by blinkie (Member # 14470) on :
I have. 2 years orals with lots of improvement. Then IV levaquin and rifampin...more improvement, now on IV vanco, oral flagyl and ketek. Doing better and better for now. No telling what happens when I stop.
Posted by MichaelTampa (Member # 24868) on :
My first lyme treatment was IV Invanz, for two months. It helped a lot.
The doc didn't say why he put me on Invanz, maybe he does that for everybody, maybe because it was neuro lyme, maybe because symptoms suggested it had gone untreated for 35 or more years.
It stopped due to insurance issues. That is also something to consider, how long will you be able to afford it.
Posted by jackie81 (Member # 27031) on :
Well I am canadian so it will be covered as long as I need it I think.
Posted by bcb1200 (Member # 25745) on :
Lucky you.
Not everyone needs IV. There are a lot of people on this site who have had lyme for 10+ years and who got well with orals. You just need the right combo.
But IV is always an option too.
Posted by RESOLVED. (Member # 24991) on :
IV totally reversed the direction of the Lyme symptoms for me.
Posted by BackinStOlaf (Member # 23725) on :
I've been on ceftriaxone iv for 6 months. I was dxd with als in march. I'm doing really well although the atrophy in my shoulders hasn't improved but my arms are a little stronger.
I had nothing to lose with an als dx. The picc is a challenge but i'm afraid I would die if I didn't have it.
Posted by maps (Member # 19758) on :
I have neuro lyme too.
Oral antibiotics since September 2009 with only a little improvement, been on iv ceftriaxin since March 1st during the spring it was amazing felt like my old self.
Through the summer I slowly went downhill, thought it was yeast, then I had pneumonia (sp) and then a bad head cold. I think I went downhill due to severe nerve pain, currently treating that with neurontin which is amazing. Came off all antibiotics for a couple of weeks back on ceftriaxin now and starting to feel better again but not yet back on oral.
I may be trying a new treatment of Ceftriaxon plus 1000 mg of azithro Monday Wednesday and Friday. I know several people doing that and it seems to be working really well.
As far as the picc line itself I felt the same way but now I condsider it my greatest assett as I had so much trouble with oral.
If you are in Canada have the nurse come everyday until you get comfortable doing it yourself and if you are herxing and don't feel you can do it you can get the nurse to come back everyday again.
I use glad press and seal which does a fairly good job. Someone posted here that you can buy a cover but have not purchased one but I wish I had.
Hpe that helps
Posted by sammy (Member # 13952) on :
I use the DryPro waterproof PICC protector. It is easy to use, no adhesives to irritate the skin, very durable. My first PICC protector lasted well over a year so they're pretty sturdy. You can check it out here: http://www.drycorp.com