posted
Well, I've just freaked myself out sufficiently about getting "floxed". I'm starting avelox tomorrow (3 days on, 7 off to monitor for tendon problems, and if OK for 2 cycles, I'll start it every day).
Has anyone had positive experiences with floroquinilones?
How do I prevent mitochondrial damage? (it seems like that's why you can get "floxed" weeks to years after taking these drugs)
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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WPinVA
Frequent Contributor (1K+ posts)
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posted
I have been on them several times and knock on wood, haven't been floxed. They were the only thing that would work for sinus infections.
So I think the thing is to be vigilant and mindful. But they are very effective in the right situation.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Oh yeah I should have said this is for Bart that we haven't been able to knock out with rifampin/doxy and rifampin/septra yet.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
Cipro hit bart really well for me. My joints moved much easier and my mood and brain fog was much better. I had to discontinue it at 6 weeks though.
I was on mag long before the cipro, but bumped it up before, during, and after. Every night I took an epsom salts bath with 4 cups of salts. The days of the week I did karate I took 2 baths.
I also started taking iodine, my research made me feel it could be helpful detoxing the fluoride at the very least. Not sure if it was, but I did go on to increase my dosage and add companion supps which I feel is helping me overall.
Fluoroquinolones can be very helpful for some. Just take it easy and pay attention to your body.
Posts: 474 | From US | Registered: May 2014
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posted
Levaquin helps me. I too was so scared of getting floxed. I resisted the quinolones for a year before I pretty much didn't have any other choice.
I use magnesium spray by Ancient Minerals. When the quinolones deplete my magnesium, the spray starts to burn my skin, so I up the dose of the spray. I also supplement iodine to help.
I've been on Levaquin pretty much for 5 of the past 9 months. So far no floxing. When I stop levaquin and restart it I get tendon pain. I thought it was a side effect, but the pain goes away if I press on. For me the tendon pain is a herx.
Posts: 748 | From Texas | Registered: Feb 2015
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I see you're in the Bay Area. If you're going to Dr. H and his group, they are the one's who floxed me.
They wanted to put me on avelox too, but I insisted on something less extreme.
After selling me some $70 mud to put on my Achilles that lasted for a week and did nothing, they said to come back after my tendons stopped hurting from levaquin.
That was 2 years ago! They basically dropped me as a patient and had no idea what to do with me when I was floxed.
I have body wide tendonitis and it keeps getting worse.
They have NO CLUE about floxing.
Some of the better LLMDs on the east coast won't even prescribe FQs because of the risk of permanent damage.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie - you're right on about the doc I'm seeing (actually I see the other doctors in his office), but I was explicitly told to watch for tendon damage and stop at the first sign of any tendon pain (which I expressed I was nervous about because I already have tendon pain in 3-4 places).
So what should I do for a resistant Bartonella? I think I already have a resistant Bartonella since rifampin can't kill it. Should I demand a different med?
Ugh. I have made such progress with this doc that I want to trust them.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
Paleogal, I've read about people who took rifampin with minocycline for bartonella, and it did nothing. Then they added plaquenil to the mix, and the plaquenil made the minocycline and rifampin effective.
Plaquenil increases the ph of cells, which makes intracellular antibiotics more effective. Might be something you could consider.
Almost forgot, some ppl get flox symptoms from plaquenil too, but it seems like not near as many people do.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
After the cipro I still had plenty of bart. In the long perspective can't tell if it made that much of a difference, seemed to at the time. I started minocycline, rifampin, and plaquenil after the cipro. Even though I was floxed a little from the cipro (achilles tendon issues) I think I am getting along okay with the plaquenil.
My bart sx cycled on and off during a flare that had sx from everything going at once. I've been on that combo with some other meds for a while and my bart sx have been replaced with all babs sx. Time for me to hit that but I hope to hold my gains on bart as I do.
Adding Buhner herbs and recommended supplements could probably be really helpful along with treating with abx.
Posts: 474 | From US | Registered: May 2014
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Judie
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posted
"you're right on about the doc I'm seeing (actually I see the other doctors in his office), but I was explicitly told to watch for tendon damage and stop at the first sign of any tendon pain (which I expressed I was nervous about because I already have tendon pain in 3-4 places)."
I just want to cry seeing that you have tendon pain and they want to put you on avelox.
I was told the EXACT same thing. I worked with the ND (Dr. S) and the PA.
The pain came so fast. It's impossible to describe how quick this med brings you down and magnesium prevention did NOTHING.
I was treating for a year and kept going downhill. They had pushed me to do avelox for a few months till I settled for levaquin. I couldn't walk for over 2 1/2 months after taking that poison.
They are CLUELESS when it comes to floxing.
From this experience, I learned I had been floxed several years ago and had recovered a bit. The doctors there were asking MY ADVICE on floxing since I had already gone through it before and somewhat recovered (this was long before Lyme).
I even brought in the FDA warnings to them and they were dismissive.
I already had peripheral neuropathy from the tinidazole they had me on and the levaquin made it so much worse. I had no idea my foot pain was actually that instead of bart.
Please be careful. These are chemo drugs that permanently change your DNA.
I've worked with other practitioners and have steadily improved.
In my experience, they really overdid antibiotics on me at that clinic and wanted to push more. My body just crapped out from their treatment and they had no desire to stick around and clean up the mess.
The clinic is good if you have straight forward Lyme, but if you have anything more complicated like co-infections or other problems like MCS, drug allergies, it's just too much for them.
My first infection with Lyme was pretty straight-forward with treatment there.
When I was reinfected and I had co-infections, they really failed me there.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
"So what should I do for a resistant Bartonella? I think I already have a resistant Bartonella since rifampin can't kill it. Should I demand a different med?"
I just gave up on treating bart with antibiotics since it just builds more resistance and work with an herbalist to keep the infection load down now.
For me, I should have moved on when their methods weren't working and they started suggesting more aggressive drugs like avelox.
It's fantastic that you've made progress. It's hard to say what's best for you.
After my experience, I'd run away and get another opinion. Try something safer first. There's no going back once you're floxed.
Posts: 2839 | From California | Registered: Jul 2012
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posted
That's the scary thing. I have not taken a fluoroquinolone in at least 12 yrs but I'm still suffering from the effects.
and the Avelox caused my heart to do flip-flops.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
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posted
I'm so sorry Lymetoo. There is really no going back after being floxed. NOTHING is the same.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
Paleogal - I don't know exactly where you're located, but I have some herbalist recommendations in the bay area if you'd like them.
"How do I prevent mitochondrial damage? (it seems like that's why you can get "floxed" weeks to years after taking these drugs)"
You can't. The way it works is it causes cell death to the infection, but also does this to the host's cells.
It binds to your DNA and interrupts the healing, regeneration coding in there.
That clinic sold me some expensive mitochondrial renewal kit and glutathione after I was floxed. Did nothing. They just wanted my money for unhelpful supplements.
They were truly asking my advice on how to fix being floxed because they really had no clue and were taking notes as I passed on info from my previous experience.
Their $70 mud was not going to fix tendon damage, just put another hole in my wallet.
The were initially very dismissive of fluoroquinolones causing damage and said it was a herx. When it was obvious that it wasn't a herx was when they told me not to come back until my tendons pain was gone.
It's been almost 2 years. A herx doesn't go on that long and I still have pain.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie--please send the herbalist recommendations! I am so saddened to read your account of your experience with Dr. S and the PA.
I actually didn't like Dr. S so much - seemed like she didn't remember me from visit to visit.
The PA I like quite a bit because I've done my own research and she listens when I ask to try something in particular (for instance, I diagnosed my own adrenal issues, asked for a test, and she was willing to request it - came back low, and they put me on medication for it). I also did research on biofilm busters and started taking some (working up to lumbrokinase), and she said that was a really good idea (she had mentioned it months ago, but never put me on it).
I have made great progress, but it mostly came with parasite treatment last month. Finally sleeping ~5.5 hours without interruption! I can sleep past that dreaded 3:30-4am jolt now.
I've also been on 7 weeks of IM Rocephin, but I'm starting to get lumpy nodules in my butt, so they're talking about weekly PICC lines (5 on, 2 off) instead. Scary stuff.
So I'm thinking try the avelox and if I don't like the way it makes me feel after the three day trial, go on to different drugs through IV.
But reading this, maybe I need to ask to be put back on rifampin, but with plaquenil and mino or doxy.
Judie- I 'm glad your bart infection is manageable with herbs. I have all the bartonella herbs (Buhner), and I've been holding off starting that protocol because I try to only add one new thing per week, and it's like 5 components, so I need 5 weeks that I'm not doing something like changing parasite meds, or changing antibiotics, etc. With LLMD appointments every 8 weeks, I just haven't had time. Maybe I should just start everything at once, but I worry a lot about not tolerating something and not knowing what.
This is so hard. Why can't specialist doctors do all the research like we do? At least this office seems to listen when I want to do or try something.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
(which means they would probably suggest something else if I put up a big stink about avelox)
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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When I brought these to that Lyme clinic, they showed NO interest.
My pain management clinic was very interested though.
Posts: 2839 | From California | Registered: Jul 2012
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bluelyme
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Member # 47170
posted
Keep us posted paleo....risk vs benifit ...houttyina made me itch but it went away ...floxing doesnt ...i had a bad sulfa experience last year and have never been right since
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Judie
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posted
Tendon problems can occur up to even 6 months after stopping fluoroquinolones.
7 days is an arbitrary window of safety if you ask me.
They know nothing about floxing over there.
Posts: 2839 | From California | Registered: Jul 2012
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posted
"It also causes insomnia. All these fluoroquinolones increase that problem."
Well, so today I tried a pill (yeah, I know, you all can yell at me now), and guess who is still awake? Tried to go to bed three hours ago, and no dice.
Sleep was almost fixed for me! SO frustrated right now. I think I'll skip this med. It doesn't feel right for my body at all.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
Short-term Avelox 5-10 days was really good for my sinus infections and for my gut. It seemed to debloat and take away IBS. I know its also microbes. I am not sure about long term Avelox.
Posts: 697 | From CA | Registered: Dec 2011
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bluelyme
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posted
Try the hootie , cumanda ,a bart ,back to rifampin mix? Glad you trusted your body
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Judie
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Member # 38323
posted
Fluoroquinolones messes up the gaba/glutamine axis (the part of you that controls anxiety and relaxation).
That's what causes the insomnia, hallucinations, and psychological problems with these drugs.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie - do you have any articles on that? I'm interested to learn more.
Pleased to report that I didn't take a pill yesterday and I had a full 7 hours of uninterrupted sleep. Amazing! Will have to demand something different from the doctor (and do Buhner in the mean time).
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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Judie
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posted
I'm so glad you got some sleep!
quote:Originally posted by paleogal: Judie - do you have any articles on that? I'm interested to learn more.
Pleased to report that I didn't take a pill yesterday and I had a full 7 hours of uninterrupted sleep. Amazing! Will have to demand something different from the doctor (and do Buhner in the mean time).
Yes, in the articles linked in the post above, Dr. Cohen talks about the Gaba/CNS issues.
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