posted
...and did it result in you gaining complete remission?
I am on 1 gm 2x daily...
-------------------- ? 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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posted
Wow, it looks like you are on a pretty solid med regimen right now! I went undiagnosed for a long time, and my symptoms had manifested into every single one of my organ systems pretty badly--especially neurologically.
I did IV Vanco two months total, and I only quit due to elevated LFT's. In over two years of treatment, it is the only medicine that I noticed improvement of "leaps and bounds."
The herxes hit me hard, but maybe 2-4 weeks in, I started to notice how things were a little better! Throughout the two month time, I had to periodically discontinue due to my labs, and I gradually noticed I had a better baseline.
IV Vanco did great things for me, and I know it has helped a lot of others on this board. Good luck!
I think I eventually worked up to 1.5g/2x/day and added on a cyst buster.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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posted
I was on IV vanco almost 10 years ago, along with IV Rocephin and oral zith for about one year. For me, the brain/cognitive improvement came after...following heavy detox protocols. The vanco was added after minimal improvement with other issues with Rocephin/zith alone for about a year.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
"The use of IV clindamycin has now become routine in our treatment protocol for advanced neuroborreliosis. This change came about after we began using oral clindamycin (with mepron) empirically for suspected cases of babesiosis coinfection in our most recalcitrant, unresponsive patients. We immediately noted some new and positive developments, e.g. absence of fever and night sweats for the first time in months/years, increased mental acuity, and so forth. Other patients had Herxheimer reactions that they had not experienced for weeks on prior therapy, even though we were treating aggressively with both intravenous and oral antibiotics. Since our most debilitated patients were already on IV therapy, we decided to try short courses of IV clindamycin and the effect has been consistently impressive, even more so than with the oral formulation. We have now gone back and retreated those patients who have had an incomplete response to prolonged IV therapy, and in 11/12 of these cases, improvement on IV Clindamycin has been dramatic. We are currently in the process of evaluating the optimal use of clindamycin, as we continually do with all of the therapies we employ. Our hope is that these more intensive therapeutic programs still provided in such a way that they are tolerated, will allow us to shorten the IV program by hastening the time to clinical improvement. "
Also this site on Babs symptoms. This guy thinks the big neuro stuff is Babs. Even more reason to try Clindamycin!
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I made gradual significant improvements on IV Vanco. After 6mo I seemed to plateau on that antibiotic protocol. Unfortunately, ALL gains were lost after stopping the med for only a few days (I was still on other antibiotics). It was very disappointing.
I was glad to feel better when I did. Wish it would have lasted.
I would never have known how I would have felt unless I had tried the medicine. You have to try it to see how you will feel. We all seem to respond differently.
Posts: 5237 | From here | Registered: Nov 2007
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And did it alleviate your brain/cognitive dysfunction?
-------------------- ? 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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posted
I felt like it made my brain pretty clear! I started to feel pretty decent on the med...I was sad to get off of it because I felt so good eventually.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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posted
Life - How long were you on it before you felt improvement?
-------------------- ? 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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As a side note...After checking my peak and trough levels, my doc has now increased my dosage to 1.25 grams twice a day. But, to top it off, my PICC appears be leaking from somewhere, so they are going to replace it today...ugh! I have had it 12 days...does anyone think that they will use the same arm (my left/non-dominant arm) or switch to the other arm?
Good grief...'never a dull moment...
~tri
-------------------- ? 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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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
They usually have to switch it to the other arm.
Dose varies based on how quickly your body metabolizes the medicine. I'm a small person and I needed 1.75-2g twice daily, that barely kept my trough at 12. Apparently, I clear medicines too fast.
For vanco, I've read that trough needs to be kept between 15-20 for optimal treatment, minimal treatment to prevent resistance is above 10. My doc didn't like to push it much above 10.
Hope you feel better soon with your new PICC and right dose Posts: 5237 | From here | Registered: Nov 2007
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posted
I think I noticed a difference 2-3 weeks in.
Have you considered a port? I have found it a great method since I have to go on/off of meds so often. Also, I don't have to worry about getting them "reinstalled all the time." Also, it is nice to take normal showers when it isn't accessed. Just a thought!
Are you noticing any improvement yet?
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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posted
Can you please tell me if you pulsed Vanco or how did you use it? Did anyone have ear problems??
Posts: 186 | From Germany | Registered: May 2012
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posted
Life - No, I haven't considered a port...my LLMD did not mention it...??? And, no improvement yet...so far, on it 16 days...
Jup - Not pulsed...1.25 grams infused twice daily. And (knock on wood!), no ear problems yet...
Anyone else?
-------------------- ? 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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I have been treating straight for 2.5 years now...'getting to the point of real frustration and depression with all of this....
~tri
-------------------- ? 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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posted
Don't think so...'was on flagyl in the past, but not now...I think, though, that it has not gone into cyst form...as I am still having active symptoms...???
-------------------- ? 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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