Cipro/Levaquin, anyone have experiences with these for Bart?

I will start off that I am aware of all the risks that come with the flouroquinolone class of drugs (tendinopathy, cns toxicity, etc, but if I’m missing anything feel free to add what other black box warnings are involved).

I’ve had neurobartonellosis for 2 years, with about a 6 month remission in there. I’ve beat Lyme and Babesia. The Bart just will not go away and my body continues to have less and less tolerance for antibiotics I used to take with no problem before.

Levaquin and Cipro are said to be used as a last resort. Well, I’m just about there. I’m currently finishing up my protocol from Dr Ak/Dr SP of Diflucan and tetracycline pulsed 2 weeks on/off which had me feeling 98% (only symptom was POTS and some fatigue) from the 2nd week I started it until about 2-3 weeks ago. My symptoms started to creep back in so my doc told me to increase Tetra to 3x/day and do 1 week on/off which I did for one cycle but realized I could not tolerate tetra at 3x/day for whatever reason. I just finished a week of the Diflucan/tetra 2x/day and my symptoms continued to creep in including a return of the dreaded anxiety. I do have moments where I feel okay, though I’m very worried since my wife is 35 weeks pregnant and I need to feel better. I’m now on day 1 of cycling off for a week and hope I can hold on. I made the thread on this combo before and recommend it to anyone with Bart as it definitely can help/cure people and the drugs are pretty safe. Heck, I may have cleared out the Bart (I’ve got Igenix and MDL labs pending any day now) and may be dealing with an auto immune response instead.

Anyways, I cannot take Rifampin or Bactrim DS, and doxy/Zith only seemed to make it worse after the first month or two. I took Mino with rifampin so I’m unsure of my tolerance to that at this point since the rifampin experience was so terrible (2 ER trips). It was Mino/rifampin that got me to remission before but now it’s not an option unfortunately.

So, that leaves me looking longingly at the Cipro/Levaquin option as my last resort unless my doc wants to either try Mino with Diflucan or try DSF. Has anyone had experience taking these drugs, and if so what were the results? They’re in tier 1 for Bart treatment and cross the BBB, and though getting “floxxed” scares me, I would only be taking them for 2 weeks to 4 maximum. I am unsure if my LLMD will prescribe it tbh, but I do have a script for Levaquin from my previous LLMD who is a very poor LLMD in my experience. He said to take it for 2 weeks on/off for 1 cycle (with tetra on the off weeks) and to stop if I start to feel the tendon pain and that was basically it. My mom is immunocompromised and takes 10 day courses of Levaquin several times a year for upper respiratory infections without a single side effect.

I won’t be doing anything until I see my good LLMD on the 7th but just trying to make as informed a decision as possible.

I should add, my symptoms are

Anxiety
POTS (unchanged in the past 4-5 months
Fatigue (some of this is POTS related I’m sure)
Malaise
Poor appetite
Coldness in legs/feet
Sporadic headaches/head pressure in varying spots.

That’s basically it. I take b-complex, circumin, nac, methyl b12, multivitamin, omega 3, and probiotics for supplements. Anything I should add or subtract?

saraeli said...
Unfortunately I don't have any advice for you on these options, but I certainly understand wanting to try anything that might help! Have you tried side acuta, houttuynia, and the other herbs Buhner recommends for bartonella? Or the Byron White or Beyond balance blends? Jernigan? How about rife? Just throwing out a few other things in case you decide against the pharmaceutical antibiotics.

I have in possession Hout, Sida, JK, and cats claw tinctures from Woodland Essence. I’ve taken them before but not for a long duration (I took them for maintenance after remission). I also have A-Bart but have never taken it before.

My hesitance with herbs is most don’t cross the BBB (if any do, please let me know which ones) and my Bart is in the brain. When I find the correct abx I usually respond extremely well, though this is waning over time.

I too was at the end of my rope and had tried about everything to get better. At best I could only get to 65 or 70% but that was it. I then tried Levaquin, fully aware of the black box warning and risks. I lasted 19 days before my right Achilles tightened up and I stopped immediately. It did heal up over the next year with no permanent damage anywhere else. I later tried Cipro, which is said to be tolerated better by some. I took it in combo with other abx long term with no ill effects and got to 80% to 90% healed with only lingering neuro issues remaining.

If you decide to take either Levaquin or Cipro make sure that you double up on Magnesium for a few weeks before starting and throughout the protocol.

I usually try to take one MagTab capsule in am, and one again before bedtime away from all ABX. I doubled that for two week prior to starting Lev/Cipro and throughout treatment.

I don't recall the dose of one MagTab SR capsule.

tickbite666 said...
I too was at the end of my rope and had tried about everything to get better. At best I could only get to 65 or 70% but that was it. I then tried Levaquin, fully aware of the black box warning and risks. I lasted 19 days before my right Achilles tightened up and I stopped immediately. It did heal up over the next year with no permanent damage anywhere else. I later tried Cipro, which is said to be tolerated better by some. I took it in combo with other abx long term with no ill effects and got to 80% to 90% healed with only lingering neuro issues remaining.

If you decide to take either Levaquin or Cipro make sure that you double up on Magnesium for a few weeks before starting and throughout the protocol.

Thanks for the advice! How long did you take cipro? And what other abx did you take with it and for how long?

I have optimag neuro magnesium and will do 200mg twice a day leading up to the appointment. What is the reason for adding more magnesium with cipro/Levaquin.. the drug depletes it?

Other than the one remission I keep getting to 95% (usually fairly quickly) but then can’t seem to fully eradicate this darn bug.

Two doses of Levaquin affected my central nervous system. On day 2 I had over 30 symptoms which included severe panic attacks, mega mucous production with severe cough which prevented me from sleeping, rumination, ocd, rage, etc. Please look up flouroquinolone forums and u-tube videos for more info. Those meds should be banned. Many doctors refuse to prescribe them. It can take years to heal from their side effects.

Quin said...
I did fine taking minocycline for bartonella. However, minocycline will only kill active bacteria. You've got to take something to get bartonella out of its dormant state. I've had success with valproate, disulfiram, and atovaquone. Unlike borrelia, when dormant bartonella is disturbed, it tends not to die but just reactivates and goes into the red blood cells.

I'm assuming that's why you're taking diflucan. It's not really clear to me why diflucan would work against bartonella. It's an inhibitor of ergosterol synthesis, but it's not clear that bartonella has similar enzymes that could be inhibited by fluconazole.

If you can't take bactrim, you could possibly try a different anti-folate, such as proguanil or dapsone, but these drugs can be hard to tolerate too.

I tolerated Malarone (atovaquone/proguanil) easier than almost any drug when treating for Babesia. When I took Malarone with doxy/Zith for Bart this fall, the combo really only seemed to make the Bart worse and I eventually crashed. It made taking something as simple as doxy too tough for me and It also set off the POTS that has not relented since.

My doc is friends with Dr SP in CT and he uses Diflucan plus tetra 2 weeks on/off as his base treatment and used it on himself to cure his Bart (he had to shut his practice for a while bc of it, unclear if he took other drugs besides those). The azole drugs appear to have some effect on Bart for many people and I can tell you within 2 weeks I went from the worst I’ve been back to 95% using that combo. I had 2-3 months of feeling fantastic but Unfortunately Its magic seems to be running out.

There is a published in vitro study that shows many of the azoles having superior killing ability of Bart Hensellae, especially when combined with a tetracycline.

I am going to ask if I can substitute Mino for tetra since it has better BBB penetration as one of my next treatment options if he doesn’t want to do Cipro. Diflucan is easy and safe to tolerate for me still. I’m a little skittish about DSF but I’ll do it if necessary. I’m still awaiting bloodwork from Igenix (only lab that has picked up the Bart, I’ve had 4 straight positive tests) and MDL. I’m holding out hope that maybe it’s just an autoimmune response but I doubt it. After I crashed off Mino/rifampin in 2018 after 8 weeks I switched to Bicillin Shots (since they seem to really help brain symptoms ) and was 100% after a few weeks. If I still test positive via Igenix then I have to decide with my LLMD if it’s cipro time or some other drug.

Why can't you take rifampin, what about rifabutin? If it was a herx, fluoroquinolones are going to hit like a sledgehammer.

Solaris,

Here's a list of abx combos I took through that 2.5 year period hitting bart with different Rif, Lev, and Cipro combos. I started treating in March 2010 with the Donta Protocol for a year then switch to another LLMD to treat Co's more aggressively and did 16 months on IV. Also used many Buhner tincture combos in parallel. I stopped all abx last Saturday to start solo Difsufiram this week. I'm at 90% again for the past year or so with occasional flaring of neuro sx. Peripheral neuropathy is my main lingering issue, and currently also seeing Dr Novak in Boston for SFN evaluation. After this I'm out of options.

5/9/16 to 7/6/16: Pulse Ceftin and Bactrim 2 weeks on/off, Alinia full time
2/29/16 to 5/7/16: Nystatin, Cipro, and Plaquenil full time; pulse Ceftin 2 weeks on/off
2/15/16 to 2/28/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil full time, no pulse.
12/7/15 to 2/14/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil. ABX pulsed 2 weeks on/off
11/26/15 to 12/6/15:Rx Cryptolepis, Nystatin
9/23/15 to 11/25/15:Rx Cryptolepis, Cipro, Tetracycline, Plaquenil, Nystatin (liquid)
7/31/15 to 9/17/15: Rx Cryptolepis, Cipro, Minocycline
7/18/15 to 7/30/15: Rx Cryptolepis, Cipro
5/21/15 to 7/17/15: Rx Cryptolepis
4/16/15 to 5/15/15: Diflucan
3/19/15 to 4/15/15: Nystatin
2/1/15 to 3/18/15: Minocycline, Nystatin
12/17/14 to 2/1/15: Minocycline, Plaquenil, Nystatin
12/09/14 to 12/16/14: Plaquenil, Nystatin,
11/19/14 to 12/8/14: Plaquenil, Nystatin, Levaquin
11/12/14 to 11/18/14: Plaquenil, Nystatin, Minocycline
10/10/14 to 11/11/14: Plaquenil, Nystatin, Diflucan
9/8/14 to 10/9/14: Minocycline, Plaquenil, Nystatin
8/4/14 to 9/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
7/8/14 to 8/3/14: Plaquenil, Nystatin, Valtrex
6/8/14 to 7/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
4/19/14 to 6/7/14: Minocycline, Plaquenil, Nystatin
4/2/14 to 4/18/14: Doxycycline, Plaquenil, Nystatin
3/10/15 to 4/1/14: Coartem (last dose taken 3/26/14 am), Nystatin
2/6/14 to 3/6/14: Doxycycline, Plaquenil, Rifampin, Nystatin
11/23/13 to 2/5/14: Minocycline, Plaquenil, Rifampin, Nystatin
11/9/13 to 11/22/13: Minocycline, Plaquenil, Rifampin

Tick bite,

Thanks for posting the combos you’ve taken. I’ve never taken plaquenil, Ceftin, Alinia, Levaquin, or cipro.

I started in oct 2017 with :
Doxy/Zith/ pulsed tindamax for 3 months
Malarone doxy Zith for a month
Coartem pulsed with doxy and Zith (I think)
Then Mino/Rifampin after I finally was dx with Bart. Took 8 weeks, got to 95%, then did Bicillin shots and was symptom free From July 2018 until last January 2019.

Sx returned, Tested positive for Babesia (despite no classic sx) and Bart.

5 months of Malarone/Zith, felt great, then came time to go after Bart.
Attempted Bactrim/Mino, abandoned after 4 days due to Bactrim crashing my blood pressure.
Doxy/Zith/Malarone for 2 months, slowly got worse.
Attempted rifampin and doxy, ER after 4 days.
3 weeks off in October where I was out of work and basically home all day.
Attempted half dose of rifampin and Mino, ER and 1 day hospitalization.
2 days later I started Diflucan and tetracycline pulsed 2 weeks on/off and it was like a miracle drug.
about 3 weeks ago sx starts to creep back and now here I am. Currently trying to make it a whole week off of abx if I can. Also had blood draws on the 16th and awaiting those results.

Dr. J uses Cipro in his Babesia/Lyme Biofilm Part B protocol (not sure if anywhere else in protocols), and it's only for one week per round (meaning 3 days week/ one week per month).My PA told me he uses it because he thinks it's a good killer. In my protocol, I would be taking it right after my week of biofilm busters (Xylitol and Lactoferrin).

Would my protocol of Mepron, Septra DS, and Omnicef (Babesia herbs also) affect bart? I don't really know what symptoms are coming from what at this point, but have wondered if bart is being hit now also.

Post Edited (ChristianWithLyme) : 1/28/2020 8:09:05 AM (GMT-7)

Tickbite - you never took Mepron or Malarone for Babesia?