posted
I had a PICC for months after my initial diagnosis. I was using Rocephin through it until I had a few clogs and we pulled it about a year ago. The Rocephin got me off the couch/bed and really made a difference for me, although I did lose my gallbladder to it. Since then I have tried different oral combinations as well as BW with little to no change. I have remained steady for the most part, but still refuse to believe this is just the way I will continue to feel.
Since going off the IV a year ago I found out I have prolonged QT syndrome so my Med. options are pretty limited and there are a few that I have had bad reactions to and can't tolerate so we are really left with no options right now.
Has anyone gone back to IV after being off it for a period of time, did it make the difference in your treatment that you needed?
Any input would be appreciated! TIA
Posts: 76 | From IL | Registered: Oct 2010
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posted
I first did 2 months of rosephin, felt ok but thats all insurance would cover. Then exactly a yr later I did another 3 months of doxy, and that changed my life. I think it was goog for my brucella, bartonella, and Ehrilicia.
I had more energy right away, and still do even though that was almost a yr ago. Still on orals though. Good luck. I'm glad I chose to do the doxy. I think it helped my brain.
Posts: 908 | From Albany | Registered: Nov 2008
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
IMO IV isn't all it's cracked up to be,
DD did IV rocephin for 5 months. At month 5 we FINALLY noticed some improvement.
After she was unhooked, she went downhill quick, unfortunately.
IMO, the whole IV thing wasn't worth it.
She won't do IV again, and I support her decision 100%.
Posts: 1885 | From here | Registered: Jul 2012
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
We are all different. But I am now on my second round of IV treatment. The first was back in 2004. It quickly turned me around to be functional again. IMHO, well worth it.
Posts: 1686 | From Maine | Registered: Jun 2004
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posted
Five rounds of IV. It made a HUGE difference, I just don't seem to respond all that well to oral antibiotics.
I will say, though, that this resulted in me having to switch around medications a bit more often. The rocephin didn't have as much of an impact the second time around.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I really appreciate the input and sharing your experiences! I did the Igenex test again yesterday, my LLMD said I needed it to get IV approved, so I have a bit of time to keep thinking? Oral antibiotics just don't seem to do much to me at all and with my limited med options I feel kind of stuck.
For those of you who did IV meds other than Rocephin did insurance cover it? Was it more costly than Rocephin? I am not sure what insurance will do yet so trying to think ahead.
Thanks!
Posts: 76 | From IL | Registered: Oct 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Whatever insurance says at the outset is not necessarily binding on them. At some point they may say it is not medically necessary and stop paying. So be careful about running up a big bill that you get stuck with later.
In other words, find less expensive ways to do it in case you have to pay after 30 days, which is what some insurances will only cover.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I'm incredibly lucky, and we have great insurance. So they covered everything - I was on Rocephin, and later Zithromax. I think I was on IV antibiotics for a year all together (the longest I did in a row was I think 5 months.)
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
28 days only.
Posts: 1686 | From Maine | Registered: Jun 2004
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posted
I am on my second round of IV antibiotics...
The first one was from 9/10 - 4/11...seven months...was on rocephin and then doxy. 'Didn't really think that it was working until I went off of it...still had neuro/brain issues, but got back to running and playing tennis again. But, when I went off of the IV, my doc put me on some orals, specifically fluoroquinolones which gave me tendonitis. He then had me go off of everything and then I plummetted. Ugh.
Fast forward to August 2012....new LLMD....he put me back on the PICC line...started with vanco...very strong antibiotic, but after a month, I had to stop it due to poor bloodwork. Then, back on doxy for several months. Stopped all meds for a month to "detox". Good for about four weeks, then plummetted. 'Been back on rocephin ever since. 'Seems like I am SLOWLY improving...and I mean S-L-O-W! Ugh....
Insurance is key, it seems, though. Mine is awesome, fortunately. They have covered everything. I don't think that I could afford it, if they didn't....
-------------------- ? 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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