posted
Hi fellow lymies and (hopefully all of you) soon to be recovered lymies!
I've been on IV Rocephin since June of last year, so it's been about 8 months. Recently I took a break from Rocephin for 1 day and all of a sudden felt very ill with symptoms I had never normally had treated or even before (bad trembling, feeling that all my limbs were asleep, a bad kind of mental haziness). Thanks to the people who responded to my posts in the midst of this!
My LLMD's interpretation of this was that the borrelia were still living comfortably inside my cells and came out to play when the Rocephin was gone. I am also on Tinidmax 500 2x a day and Biaxin 2 500 mg 2x a day (2000 mg total/day). If her feeling on this is right there is still a lot of lyme left in me which isn't a very pretty or heartening thought. I wonder if anyone else has had this type of experience?
If I am only a partial responder or non-responder to IV Rocephin what else is there to try? I suppose IV Doxy or IV Zith and other drugs I can't immediately recall but wouldn't those create problems the opposite way (lyme lives outside cells even if it is killed inside them)?
Are there any non or partial responders to Rocephin that found success using a different IV/IM drug, or altering the oral drugs they were on in conjunction with the Rocephin? I think it would be really helpful to know.
Thanks for all who respond and share their advice or experiences!
john duncan
[ 26. February 2007, 07:04 PM: Message edited by: sunnyslumber ]
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi,
Read Dr B's 2005 Guidlines, If IV Rocephin is a Cesaphlorin, then it would apply to what he says with treatment failures.
Use Imipenem, Vancomycin, and some other antibiotic.
posted
I also have had a 'treatment failure' with IV Rocephin. I was on it for 3 months and didn't make any improvements or herx at all. I recently added Rifampin and have had some improvement and just today switched from IV Rocpehin to IV Doxy. I can keep you posted as to how I progress.
Posts: 90 | From massachusetts | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
sunnyslumber~ That is a long time on IV rocepin to not see improvement. It could be that a co-infection is a cause of your issues...
I was on IV rocephin for 6 1/2 months. It took 4 1/2 months for me to see significant improvement. I was also on oral doxycycline at the same time.
When I stopped all antibiotics I was hit again with lyme symptoms 3 weeks later.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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WildCondor
Unregistered
posted
There are plenty of other antibiotics that will work. Read the Lyme Disease Treatment Guidelines! It's got them all listed in there.
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posted
Thank-you Health, Scottie, Timaca, and WildCondor.
I will indeed read Dr. B's guidelines since I don't remember them except the broad outlines. Maybe he also includes some personal experience of his with treating patients who don't seem to respond to Rocephin.
Scottie, it would be very great to be updated by you to see how you're doing on the IV Doxy. I don't know if you had a new topic, replying to this thread or PM'ing in mind but any way is fine with me.
Hi, Timaca, really sorry about that. I hope we both find something that works, if you haven't already. My llmd did go after babesia pretty hard but I still feel like I have it to a lesser extent. Now I'm taking oral clinda and soon to be taking quinine but there was never a point where I wasn't taking one of the Babesia drug combos.
About bartonella, does anyone know if it is supposed treated before lyme?
Sorry to all of you to take so long to reply. I typed this out at school on Monday and then came home and laid down exhausted. It turns it was the beginning of the flu, which I've had since then for the rest of this week. It is better today so I thought I'd try and reply, but I know it must be irritating to have someone post a topic and then just fall off the face of the earth, so to speak.
So sorry about that and thanks for your replies!
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I found that once I really addressed my co-infections I relapsed less and less with lyme treatment. IM bicillian shots were also very effecive with hitting the lyme.
Good luck
Posts: 1603 | From ny | Registered: Aug 2006
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