Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Can somebody please describe treatment for bart?
Levaquin or Rifampin.
What doses are the best?
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kelmo
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Member # 8797
posted
I don't know what does best. I understand Leviquan has tendon issues. Rifampin is good, but I think you have to mix it with something.
My daughter has Rifampin and Zith. She has been on Zith since January, added Rifampin in June. She is smiling today. Don't know how long that will last, but at least we can say it's a good day.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I just had to stop taking Levaquin afetr 1 week because of severe muscle/joint/tendon pain...so severe that I couldn't barely walk. Pain increased until both legs hurt so bad and hips, head and eye pain started.
LLMD took me off of it today and he is still debating over what to start me on next for the Bart. I have heard Rifampin is a pretty acceptable alternative to Levaquin.
I definitely DO NOT suggest Levaquin to anyone...but everyone's bodies are different and it works for some and not others.
I would do a bit of research before I would start anything for Bart...if I were you. That's what I did and I found out some scarey things about Levaquin! I'll never start a new drug until I research it first! Good luck (we're in the same boat), ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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posted
I am having good results with Levaquin. I take 500mg. once a day. Granted since I have joint/tendon/ligament pain as one of my major symptoms, it would be harder to tell about tendon problems.
I have not felt an increase in pain or had weakness as others describe. My foot pain is getting better as well as headaches and less overall pain.I am usually a person who will get every rare side effect listed. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
According to some fo the leading ILADS members, levequin is the prefered agent.
On a personal note, I have have both levequin and rifampin. Only levequine had a positive impact.
In other offshore reports, zithromax has been used as has dual antibiotics. There was an intersting paper from india in which persistent diease was reported for several people and long term treatment with multiple agents was needed to eliminate the disease and in some cases the accompanying basillary angiomytosis.
I will try to dig it up as I think I have it around here somewhere.
Posts: 1184 | From north america | Registered: Feb 2003
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liz28
Unregistered
posted
I did five months of rifampin, ketek and vinpocetine/vicamin for bart, and so far it hasn't been back.
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Would Ciprofloxacin kill Bartonella?
Does Rifampin have to be used?
I am still looking for answers to my health, maybe not still lyme, had a 128 on the CD-57.
I did 6 weeks of Ciprofloxacin 6 years ago, maybe this rules out Bartonella? Back then I did not know I had lyme, my MD
did a trial of ANY antibiotic to see if I would improve, I did not. I did though get pain from Ciprofloxacin.
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I did Rifampin alone for three months and then doxy. I have no clue why it was used separetely and not together, but it definately did work and two years later- symptoms are SLOWLY creeping back in.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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liz28
Unregistered
posted
Ramp up of one-half of one rifampin capsule per day until your body becomes used to it. Then three to five months of two rifampin capsules per day, together with the best macrolide your body will put up with and the absolute best liver support you are willing to shell out for.
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posted
So far I've been on 500 mg Levaquin once a day for Bart. I chose Levaquin because, if I recall correctly, Dr B's protocol says it's the only drug with which he has not seen relapses.
I'm taking 9-120mg capsules of magnesium glycinate a day in two doses separated from the Levaquin by 4 hours. (Am told this helps decrease tendon problems.) I'm also doing very light Tai Chi warm-up exercises (as recommended by my acupuncturist) to help manage the migrating tendon pain. When tendons hurt, I do the Tai Chi and the pain stops.
Also, an LLMD/Psychiatrist told me that Levaquin decreases GABA in the brain (or its function) so I'm taking 500 mg GABA three times a day, 500 mg 5HTP two times a day, 500 mg free Glycine two times a day and at night: 500 mg GABA, 1 g 5HTP, 1 g free Glycine to help keep me calm and not raging. It's working really well at preventing lyme rage (which the Levaquin triggered big time!) although I'm a bit tired/sleepy during the day.
Of course, everyone's situation and constitution is different but I think I'm doing pretty well and these are the things I'm doing specifically for dealing with Levaquin.
My experience with Levaquin is that it's a rough drug. After tx for Lyme and Babs for almost 1.5 years, I had gotten rid of the afternoon energy crash. Levaquin brought it back.
I keep holding on to what Dr. B said and sticking it out especially since my tendon pain migrates instead of sticking in one place. 5 more weeks to go.
Best of luck to you, Areneli, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Areneli
Frequent Contributor (1K+ posts)
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posted
DeniseS, So how many months your treatment supposed to last in total? When would you stop it and decide that you are cured?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I didn't discuss the length of tx with my LLMDs however Dr. B suggests 1 to 3 mos. (Found this on www.betterhealthguy.com's summary of Dr B's talk at the 5/27/06 ACAM conference.) Since Lev is a challenging drug for me (wrt to mood and general body discomfort tho those are probably easier to tolerate than severe tendonitis), I'm just hoping I can make it the 3 months and then move on.
I have had several sx disapper while on Lev: sore soles of feet and my poor Lyme addled brain can't remember the others, duh.
I'd base further tx decisions for Bart on sx and the advice of my LLMDs.
D
PS As I reread Dr B's protocol and the transcript of his talk, I think I'll ask my LLMDs about adding a proton pump inhibitor for the maximum benefit. I don't know the side effects, though.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Areneli
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posted
Thank you all for your help.
So far I wait for my Bart result from Igenex before I start Bart treatment.
They have already charged my credit card for the bart test.
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kelmo
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posted
I've heard that Dr. B is starting to favor Ketek. That one scares me a bit. But, this is much like cancer treatment, huh?
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Areneli
Frequent Contributor (1K+ posts)
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posted
Ketek made my liver enzymes go to the ceiling.
I have many symptoms that could be caused by Bart so most likely I will take the treatment even if there is no confirmation from Igenex.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Dr B put me on Factive, a drug like levaquin for possible Bart. Unfortunately, I was severely allergic to it, hives , swollen lips etc. However, if you can take it, it may the best one to try?
-------------------- To win this battle, make the time for exercise and fitness activities! There is no shortcut to any place worth going! pegee4 Posts: 59 | From Hamptons, New York | Registered: Aug 2006
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kelmo
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Member # 8797
posted
My daughter has been on zith since January, added Rifampin in June. I think it will be more than four months to get rid of this bug. She's improving, but far from functioning in the real world.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Kelmo, so Ketek for Bart? I was on Ketek for 6 months but still had Bart sx. I guess we're all just trying to figure this out.
D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Just wanting to know anyone's positive experience with Levoquan. I just received Dr. B's talk on Bartonella at the LDA conference. He is a big supporter of the drug.
My daughter has been on zith and rifampin for six months...zith for 10 months. So far, there has been improvement, but she doesn't fare well going off for any period of time.
Would like to give Lev a try.
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
My Bart has been confirmed in the mean time.
At present I take Tetra 2000 mg/day. It is probably working against Bart as well because there was a meaningful improvement in all symptoms. I have only one major symptom left which is hypersensitive skin. Plus traces of other symptoms.
Oh, and I have slipped on slippery sidewalk and overstretched my ankle. Cannot walk for non-Lyme reason.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Saw this discussion was up again so I thot I'd update.
Yesterday was the end of my 17th week on Levaquin. Today, I stopped taking it. The herxes have tapered off significantly however now I'm feeling pretty bad outside of my normal herx cycle so I don't know what's up. I feel a bit depleted.
One of my docs is doing more research on HHV6 tx with Valcyte so that's what that doc is recommending next. I have apptmts with 2 more LLMDs tomorrow. I bet they're going to suggest I switch to Rifampin before they put me on IV.
In order to tolerate the Levaquin I ended up taking Lyrica 500 mg for sleep, 3 hydrocodone tabs for restless legs at night, Zoloft (though now switching to Lexapro) for depression and Pepcid 10 mg 2 times a day to keep me from being doubled over with stomach pain that starting midway through the Lev tx. (With the exception of Pepcid, I added all these meds in slowly in small doses.) Needless to say, Levaquin has been rough
One LLMD sez most ppl tolerate Rifampin pretty well. I just really wanted to stay on Levaquin since I read that Dr. B said that it was the only drug he hadn't seen a Bart relapse with.
Hope that's helpful to somebody.
Good luck with Bart everyone, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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