posted
Hi all, I'll try to be clear with my questions. I have been in treatment for 20 months with the following in order of treatment: tetracycline 3 months Biaxin/plaq 4 months mino 3 month ketek/ceftin 1.5 months IV Rocephin 3 months IV doxy (I couldn't tolerate)1 week IV Zithromax and Rifampin almost 2 months
The only 2 combo's I made any progress on were biaxin/plaq and zith/rifampin. Most recently I was making progess on iv zith combined with rifampin but had to stop zith due to severe ear ringing and other toxic reations. My doctor thinks I've not made much progress because I still have Bartonella (I have CNS issues out of proportion from other issues which is clear Bart) Doc wants me to go on Levaquin but I am so scared of all the psych side effects I've heard about. So, I'm soliciting info on two items: what other combos have worked for folks to get rid of Bart? I'm willing to stay on the rifampin longer and add something else to it to kick the bart. Second question: what do folks think about the psych side effects of Levaquin? Should I risk it or try to find something else and use Levaquin as an absolute last resort? Thanks!
Posts: 98 | From cambridge ma | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I can't speak to the other issues but for me...
I seem to have more emotional stuff with Zith(oral). I don't remember Levaquin doing the same thing.
I was not on Levaquin long term (about 3-4 months). I think my reaction to Zith is showing Bart is nowhere near done. I'm not sure.
It could certainly be just me.
I have never taken Rifampin.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
No psych effects for me...but I developed muscle and tendon pain which can occur with quinolones, so had to give it up.
Have not heard of any psuch problems with it...but then, I'm not a doctor!
Good luck!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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valymemom
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Member # 7076
posted
No psych effects, either.....no tendon problems, either.
I did levaquin and ceftin for 9 weeks at the beginning of treatment and then at the end of my treatment again for about the same amount of time. No problems.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been on Levaquin for 4 months now and have about two more weeks left before I go off it.
The only time I had any psych problems was when I accidentally took double the dosage I was supposed to be taking.
Long story, but as soon as I got back on the regular dosage I was fine again. I've even been able to stop my antidepressant while I've been on Levaquin.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I would be more worried about the psych effects of Bartonella than the psych side effects of Levaquin. I'm currently on Factive, a close relative of Levaquin.
What are your Bart symptoms?
Remember, if you start Levaquin, supplement with high doses of magnesium to protect the tendons. Just make sure to take them at least 2-3 hours apart.
Posts: 443 | From The Wild West | Registered: Jan 2002
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tailz
Unregistered
posted
I could only handle 4 days (barely) of Zithromax, before I had to stop. I could not sleep at all and was extremely agitated. Only 4 days of it though slowed my diarrhea way down, but then my stools turned pale (liver alert).
I dread being put on Levaquin after reading this post though now.
It seems all the antibiotics that used to help me in the past I have severe reactions to now. Or maybe this is because I won't take psych meds anymore for a systemic infection.
I only tried the Zithromax I had left though to see if it would help anything so I could try to figure out which coinfections I have. I'm pretty convinced now I have bart, too.
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posted
I was on Levaquin for pneumonia back before I
knew that I had Lyme and had a pretty severe
reaction after a few days. I actually ended up
taking myself off of it (not something I would ever do under
normal circumstances, but couldn't handle it!).
I think it may have been because my bacteria
load was so high at that point and Levaquin is
such a strong drug- don't really know. Anyways, it included extreme
anxiety, inability to sleep, shock-like "zaps",
room spinning whenever I layed down, feeling
like I was going crazy, etc...
But I also tried Mino/ Rifampin for Bart more
recently and had to come off of those twice
because of such a strong reaction to them, so
I guess everyone's a bit different.
Posts: 7 | From northeast | Registered: Jun 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Why not try Cipro>?!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I'd be more worried about tendon issues.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I'm on levaquin now because bart causes me to have severe muscle spasms.
With my LLMD's blessing, I take it only at 1/2 dose for 4 days, then take 3 days off. I do this for 3 weeks, then take 1 week off.
So far it is working remarkably well. I'm really pleased with the results as I've been able to function for longer periods and the muscle spasms are greatly reduced.
I do have some mild tendon pain, but I supplement with 4 tablets of magnesium citrate on the days I'm on levaquin.
I have had no psych problems with it - however, before we started with levaquin I was on rifampin. It did nothing for me and I seemed to get worse with muscle spasms, confusion, spaceyness, etc.
Just thought I'd share my experience with levaquin.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
It's interesting how we are all so different. I don't know if there will ever be a one pill treats all for lyme.
I am really drug sensitive to everything, but Levaquin is one of the few antibiotics I can some what tolerate.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Thank you for all the insightful responses. I'd like to keep this post going for a day or two so we can get good information for those of us with Bartonella to share.
Posts: 98 | From cambridge ma | Registered: Oct 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Nic, do a search, if you have't. Tons of feedback on Levaquin & Bart
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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I have positive antibodies for bart, and some days ago I got a positive bart test (microscopy). I don't know why, but somehow I have never really thought about it as something to treat.
Which symptoms do you attribute to bart? Do you know of a symtom list?
Posts: 275 | From Home | Registered: May 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I understand your fears, I would more willing to try Cipro even though it is of the same family first to see how that goes.
Biaxin is a Bart killer and it doesn't surprise me you did well, but it takes time, lots of time. I had Bart, but have been on Biaxin/Amoxi for many months (I too have had horrible CNS) issues but then after several retests the Bart appears to be gone. LD itself can cause horrible CNS symptoms. My sister who has Bart has NO CNS issues. Go figure! We are all different and I really don't know if I believe they have nailed down what causes what symptom.
If you read the book (which I don't highly recommend personally) Everything you need to know about Lyme Disease, the author suggest Ehrilichia (sp?) to cause CNS symptoms.
I just think that LD and co-infections symptoms over lap each other so much, I don't know how an LLMD can specifically with confidence say what exactly the cause is.
I was tested finally, (after months of requesting) for all possible (herpes) active viruses. They are very common with LD (viral co-infections) and can also create horrible CNS problems, going right for the nerves.
Turns out I was positive and actively infected with three, HHV6, CMV & EBV. I believe viruses need to be looked into if your having CNS issues and have been treated for Bart and are not getting better. And again, LD itself can create horrible CNS pain and symptoms. I always insist in playing a very active roll with what is prescribed w/ my LLMD. I will insist to stay on what seems to be working and away fom drugs that scare me. As my LLMD put it, whatever seems to be working is fine, it is all hit and miss. If it were me, I'd go back on Biaxin if it was working.
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