posted
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!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
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.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
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.
Posts: 747 | From Utah | Registered: Apr 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
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.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
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!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
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.
Posts: 1104 | From N.California | Registered: Jan 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
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.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Well I am canadian so it will be covered as long as I need it I think.
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
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.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
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.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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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
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
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.comPosts: 5237 | From here | Registered: Nov 2007
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