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Posted 5/9/2018 10:46 AM (GMT -5)
Hi mpost.

Did you have a good experience with levaquin? Two. lymph node have appeared today in my neck...

My llmd is worried... i commented him to take levaquin. He said me it would be an option... he says it's the most powerful abx to treat bartonella. He said it would be safe 500mg once day and 500mg doxy. Is it safe? At this point i don't trust anyone sad

Post Edited (OriolCarol) : 5/9/2018 1:52:59 PM (GMT-6)

Posted 5/9/2018 10:53 AM (GMT -5)
OriolCarol,

You might want to edit your subject line to read "For mpost."
Posted 5/9/2018 10:54 AM (GMT -5)
OriolCarol -

I know you asked mpost but hope you don’t mind if I post.

From what Ive read, Levaquin/Cipro are the most effective for Bart but they do have some serious risks - there’s a black box warning label issued by the FDA - I’m sure you know this.

I don’t know the correct dose.

Actually there’s two B.B. warnings: risk of tendon rupture and peripheral neuropathy (which could be permanent)
The problem is how do you know if it’s a herx when you get a worsening of the neuropathy .. or is it the side effect of the drug?

Maybe add the subject : Levaquin? If you want others input
Posted 5/9/2018 10:58 AM (GMT -5)
How long did you give the Rifampin ? And what about Rifabutin ?


If it’s only been a month or two it’s not very long.

My swollen clavicle lymph node took several months to subside (more than 6 months)


It is your decision to make.
Posted 5/9/2018 3:00 PM (GMT -5)
depends what u think good experience means. my tendons did not break.... nor was i healed of bartonella.

i took 2x500mg levaquin and 2x300mg rifampin a day for 21 days. i think it helped my gut restore function. but as to curing bartonella....no way....
Posted 5/9/2018 3:09 PM (GMT -5)
mpost - is that the usual dose for levaquin?

I know for Cipro - Dr. J. clinic prescribed 500 mg twice daily for me.

Also, 21 days isn't much time. Why did you stop the levaquin - were you concerned about the risks?
Posted 5/9/2018 5:52 PM (GMT -5)

OriolCarol said...
I would like to take rifabutin... combined with mino,that i'm taking now...

So why don’t you?
Posted 5/10/2018 12:02 AM (GMT -5)

Girlie said...
mpost - is that the usual dose for levaquin?

I know for Cipro - Dr. J. clinic prescribed 500 mg twice daily for me.

Also, 21 days isn't much time. Why did you stop the levaquin - were you concerned about the risks?

i was not concerned about risks. my previous LLMD had scehemes of treatment of maximum 28days with one week break. so during 6 months of treatment she cycled me through 6 different schemes. most had cipro or levaquin so i took 3m of fluoroquinolones. no tendon probs.
Posted 5/10/2018 12:33 AM (GMT -5)
no girlie, 2x500mg is NOT the right dose of levaquin. the right dose is 1x500 but my previous LLMD prescribed everything at least 50% higher if not 100%. i took 300mg mino instead of 200, 1000mg levaquin, 1500mg cipro, 1500mg tinidazole, etc etc... it was always a bit higher than what i found people take on this forum or on ILADS..

i heard dr J from DC had similar approach, btw... i also heard he cycles through treatments often. isn't that so ?
Posted 5/10/2018 12:40 AM (GMT -5)

OriolCarol said...
Hi mpost.

Did you have a good experience with levaquin? Two. lymph node have appeared today in my neck...

go to an ultrasound and have them checked. it's a special ultrasound for soft tissue. they can tell if it's something to be worried or not. i had a swollen node under my jaw. had it checked twice. dr told me not to worry, it's just responding to something, but not looking like a malign one.

of course u can be 100% sure only with biopsy, but ultrasound is the first screen, generally almost all nodes that look fine on ultrasound are fine and won't cause problems. and since it is not invasive, it's something you should really do.
Posted 5/10/2018 12:42 AM (GMT -5)
So 500 mg twice daily of Cipro is what Dr. J prescribes.

No, his mino is 100 twice daily.

But his mepron is two tsp twice daily - which is hard to take.

His Flagyl is 500 mg twice daily.

Dr. J doesn't cycle through different protocols frequently.

For instance, I will be on the same protocol for 3-4 months. (Started in beg of April and won't change until july or August)

But, sometimes one protocol has different meds on different weeks.
So if the cycle is 2 weeks on, 2 weeks off...Week 1 and 2 may not be identical - there may be one antibiotic that changes...but one that stays constant plus the anti-malarial.
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