I'm doing well after 2 years of fluoroquinolone toxicity hell - I was floxed. Here's what helped me recover from Cipro side effects.
Which, on one hand, I guess is good news for the general population .. But it definitely made trying to figure out my own way out of the adverse reactions SO much more difficult.
It took a long time for me to figure out what helped lessen the effects of my case of cipro toxicity, and I really just hope that my experience can help someone else going through similar side effects
First, a bit of housekeeping and disclaimers:
What is Cipro Toxicity?
Cipro toxicity is a form of fluoroquinolone toxicity. Also called “being floxed” or “floxing”, this is the name given to a whole host of problems that can arise from the use of ciprofloxacin and other fluoroquinolone antibiotics.
These antibiotics are supposed to be reserved for the most serious infections, as they have a huge risk of serious side effects - this is why the US Food & Drug Administration has issued black box warnings for the whole class of antibiotics.
... but nope. Many of us poor unfortunate souls who find ourselves floxed were prescribed antibiotics from this class of drugs with absolutely NO warning about the dangers of fluoroquinolone use, by medical professionals who hand them out like they’re candy.
... yes, I will forever be salty about it.
In my case, this didn’t need to happen. Ciprofloxacin use was overkill for my infection. A normal, non-AWFUL, broad-spectrum antibiotic cleared it right up after my last dose of Cipro... with none of the risks that any fluoroquinolone drug presents.
These drugs aren’t supposed to be used as first line treatment for urinary tract infections and minor bacterial infections, they’re intended for more “life or death” circumstances, like Typhoid Fever.
“The FDA has determined that fluoroquinolones should be reserved for use in patients with these conditions who have no alternative treatment options. For some serious bacterial infections, including anthrax, plague and bacterial pneumonia among others, the benefits of fluoroquinolones outweigh the risks and it is appropriate for them to remain available as a therapeutic option.”
Honestly, after the last 2 years... I think I’d take the anthrax, typhoid, or plague over even a SINGLE dose of a fluoroquinolone!
I am Not a Doctor ... and I am definitely not YOUR doctor.
As someone who’s in no way part of the medical community,
I’m not qualified to give medical advice, and I am NOT giving medical advice in this post.
This post is an outline of what worked for me, and what did not work for me.
One of the really frustrating things about fluoroquinolone toxicity is how varied everything is, both in how it presents in people, and what works / doesn’t work for people.
The same goes for oxidative stress triggers.
There are things that triggered massive flares for others, that did not for me (gluten, alcohol). There are things that triggered massive flares for ME, that other people have been fine with (glucosamine! WTF!?)
How I was Affected
I’m in the process of posting my entire experience with the side effects of ciprofloxacin. I have a chunk of it posted here: Floxed By Cipro, with links at the bottoms to the diary entries tracking progress, symptoms, and setbacks at the bottom of that page.
As a TL;DR:
I had sudden pain onset the morning after I started my round of Cipro, after only two pills. That pain quickly escalated to a severe reaction by that afternoon as peripheral neuropathy, an irregular heartbeat, and tendon problems set in.
Over the following years, I suffered long term tendon damage to all of the tendons in my feet, including achilles tendonitis and a partial tear of one achilles tendon.
That “risk of tendon rupture” is no joke!
Because it’s “rare”, there’s not a lot of info out there, and so much of the medical community is either completely uneducated / ignorant on cipro toxicity, or will straight up gaslight you.
I had to spend a good portion of my convalescence on the couch, reading about things like mitochondrial damage ... when I SHOULD have been skating. Ugh.
Anyway, enough ranting, let me get to the point:
Here’s what helped me recover from fluoroquinolone toxicity - and what didn’t.
In looking over what all helped me over the past couple of years, I decided to break it down into categories:
Pain relief / comfort
Mobility & Accessibility
Due to both the pandemic situation and my ABSOLUTE inability to even stand, I bought pretty much everything on Amazon, and I’ll have links to the specific products that I used and can recommend directly.
I’ve got a LOT of info to dump, so let’s get to it!
Pain Relief / Comfort
There are a few different ways that I got at least some degree of comfort throughout this ordeal, these are the ones that worked for me:
Ice Packs / Heat Packs
This was how I first thing I did to deal with tendon pain, mostly in my feet... but also in my shoulder.
I let my pain tell me what I needed, and got to learn the difference between “Heat will feel better for this” vs “I need ice on it now”. IIRC, it was mainly ice to start, with heat packs helping a little later on.
I found it to be a good idea to have several different types of ice packs on hand, because the pain would move around, and it was nice to have ice packs suited to the particular affected area.
Also, it was good to have multiple ice packs so I could constantly swap them out, and always have a few in the freezer. There were times where multiple areas had to be iced at once. Ugh.
Ankle & Foot Gel Ice Pack/Ice Wrap Compression by ARRIS - this one was great both because it was a hot/cold wrap, and because I could treat a couple of my main pain areas at once, when both my ankle and toes / top of the foot were affected at the same time. It was handy!
NatraCure Universal Cold Pack Ice Wrap - this one was great especially for when I was having the shoulder tendon issues. The pack has a longer strap, so it gives you more options for where and how to use it. I’d also use it up the back of my calf, the ankle, and wrist.
Ice SLIPPERS - OMG these were AMAZING. I had no idea that such a thing existed, but when my toes or the tops of my feet were all flared up, these were a GODSEND.
There was one other one that I no longer have. I think it was intended to be disposable - white plastic - that my chiropractor gave me during a bad flare.
I think it was probably 12 or 14" square - so much bigger than most - and it really came in handy for when there was a BIG area inflamed / severe pain to be REALLY chilled. It was also good for general muscle pain, even beside the tendon crap.
I can’t find an example of the specific one, so I’d just recommend “a big one” in addition to the above specific recommendations.
Massage / Manipulation
In general, I avoided massaging the actual inflamed tendons for the most part (Didn’t want to cause even more serious damage!) ... but tendon pain made me walk in weird ways, or sleep in weird positions, and that led to secondary muscle pain ... which led to joint pain.
Aren’t bodies fun?
Here’s what I used for soothing / beating on my muscles:
Massage Roller - I have several different massage rollers and foam rollers, but this little $9 Handheld Massage Roller is my ABSOLUTE favourite of the lot. The bend in it made it perfect for working on my calves, shins, and quads - the main areas I needed help. Also nice on the forearms. HIGHLY recommend!
Muscle Scraping - I can't remember who told me about Gua Sha - Hell, I may have seen it on a TikTok or something - but this little Stainless Steel Muscle Scraping Tool has been awesome. They come in all different shapes, the one I linked is the one I have. Love it! Really helps strip out bound up muscles.
Also: The first few times I did it on my upper back (right before bed), I slept like the dead. No idea why, but... yeah.
You need to use a lubricant when muscle scraping, I use both Sweet Almond Oil and Barefoot Venus Essential Oil Massage Oil. I especially like the spray bottle on the Barefoot venus one - makes it easy to not get it EVERYWHERE.
Massage Boots - I also bought these Nektech Leg Massager Boots. I didn't use them during active flares, for the most part - there's no way my feet would have tolerated that - but when the flares would leave me with tight, immobile legs, these were amazing. Sometimes I'd leave them on for hours - it's an air based compression massager.
Now that I'm in recovery, I use them after long hikes, they seem to help my legs recover a lot quicker than when I don't.
Foot Roller - For the days when I could actually get to my desk and have a somewhat normal work day, I bought this really basic TheraFlow Foot Massager Roller, and just leave it under my desk. I had all kinds of arch and heel pain throughout this whole ordeal, this worked well to loosen things up.
Magnesium Spray - I used a lot of Swanson Ultra Magnesium Oil Spray, on the recommendation of another floxie. I don't think it did anything for immediate pain, but I think it helped as a long term thing. I'd spray it over the inflamed tendons and usually just let it soak in - a lot of the time, things were so bad that I couldn't bring myself to TOUCH the area.
Magnesium Gel - I used Bolton's Naturals Magnesium Chloride Gel before I heard about the spray. I'd gingerly spread some on and just leave it, for the most part.
Arnica Gel - On the recommendation of another floxie, I used this Arnicare Gel. I wouldn't say I experienced the same degree of pain relief that he got from it, but it DEFINITELY took the edge off the really bad days. Which, really, can make a huge difference when you're not convinced you can take any more of the pain.
After a ton of reading on Methyl Salicylate - and bugging a fellow floxie (who's a chemist) for info - I decided it would be worth the risk to give it a try. Methyl Salicylate is apparently "technically" an NSAID, but not in the same class of things like Ibuprofen, Aleve, etc.
Happy to report that it worked well, WITHOUT causing any flares. HALLELUJAH, OMFG.
I prefer the extra strength, full-smell stuff. The "no odor" versions do not work as well, IMHO.
I'm honestly a little shocked that my fingers and toes aren't just permanently "prune" from the amount of time I spent taking hot soaks in the past 2 years.
Epsom Salt - I went through literally hundreds of lbs of Epsom salts, as I used it a couple times a day. At first I was buying 10 lb jugs of it at Walmart, eventually I started ordering 50 lb bags from a local supplier.
I'd divide the bags up among empty jugs of the walmart stuff and add fragrance oils to keep things interesting. My favourites were anything pineapple or orange scented, and peppermint eucalyptus - both seemed to have a positive affect on my mood.
Peppermint-Eucalyptus Salt Scrub - I also made a homemade Peppermint Eucalyptus Salt Scrub which felt AMAZING when rubbed into my achilles / calves / shins.
Massage Soap - As part of that whole thing (the linked recipe/tutorial), I also bought a pack of Massage Bar Soap Molds. The combination of that nubby shape and the peppermint/eucalyptus soap was AMAZING for foot, shin, and calf pain.
Foot Soak - Because running a bath goes through a LOT of water (and usually involved me having to crawl to the bathroom!), I bought this Misiki Foot Bath Massager. It was a lot more convenient, and I kept it by the couch for daily soaks.
These don’t really fit in any other category, but this Leg Elevation Pillow really made those months stuck on the couch a lot easier.
Elevating my legs on this pillow were a lot easier on my knees than sitting with my feet up on the arm rests!
If you get this, just know that you’ll want to stretch your hips / back periodically - especially your hip flexors!
Finally, I did some red light therapy. My husband did a bunch of technical reading on the subject to be sure he was OK with the idea - it does sound awfully “woo” for our tastes - then went ahead and build me a red light array.
He’s in the process of doing up a post on what he did when building it, I’ll link it here when it’s ready.
What Didn’t Work for Me
As I alluded to earlier... Ibuprofen *wrecked* me.
Before I knew that NSAIDs (and steroids!) were now dangerous for me, I took an Ibuprofen for a headache, a few months in. I’d been doing better at that point, and that pill sent me flying back to square one.
I’d never had any kind of an issue with NSAIDs before being floxed, this made the little toes on one foot pull back 90 degrees, standing straight up. Toes should NOT do that, and it was incredibly painful.
0/10, do not recommend.
Mobility & Accessibility
Having my feet destroyed by an antibiotic had a huge impact on my ability to do ANYTHING. Here are the things that helped my mobility - my ability to get around - and accessibility (My ability to do things other than walking).
Knee Scooter - A day or so after I was floxed, my husband whipped together a homemade knee scooter, thinking this was just going to be a couple of days. It was early in the pandemic, so we were not leaving the house. It got the job done, but turning was difficult!
We quickly realized we needed something more maneuverable, and started off by renting a knee scooter when I thought it would be relatively temporary, then bought one (used) when it became clear that this was a long term disability event.
Pro tip: Spend the extra few bucks and get the “all terrain” or “heavy duty” type version with the bigger wheels. It made a HUGE difference when it came to anything outdoors, and gave me a lot more freedom.
Boot: For the days where I could actually put some weight on my foot - but couldn’t walk on my own - I went through 2 boots. The first was the United Ortho 360 Air Walker Ankle Fracture Boot. I'm about a size 9.5, and the medium was perfect. This boot was fantastic, until it stopped holding air and I had to keep pumping it every few minutes. I think one of my cats chewed on it - the same had happened to an earlier (pre-cipro) boot, a different brand.
When I had to buy a new one, the only one that was available in a reasonable time frame was the United Ortho 360 Air Walker Standard Fracture Boot. I needed it in a rush for some reason, so had to order this one - it was DEFINITELY overkill, but it got the job done. Good quality.
They worked great, my only complaint is that it reminded me of lacing up my skates and would give me a moment of depression when getting into them. Obviously a "me" issue, not a product issue!
Compression Socks - On the advice of another Floxie, I bought a couple pairs of compression socks: One expensive pair from whoever advertised them to me on Facebook at the time (no idea!), and this cheaper pair of Physix Gear Plantar Fasciitis Socks with Arch Support. I didn't notice any difference between the two, so would recommend saving the money and trying a cheaper version. (I think I paid $50 for the first pair?)
These were great for when I was in "recovery" phases - there's no way I'd have been able to use them in the initial acute phase or during a flare, though. They felt like they gave me support I needed, without the bulk / overkill of using the braces at those times.
Cane - Sometimes I needed a cane to get around, or just to get down the front steps to my waiting knee scooter. I'm guessing that a cane is a cane for the most part, so get what works for you!
I highly recommend getting a GOOD supportive shoe, with an arch support insert if you need it.
At some point, I impulse bought a pair of Moving Steps Walking Shoes after seeing a brightly coloured ad on Facebook.
Gotta say... possibly the best pair of shoes I've ever bought, and they were PERFECT for what I was going though. Comfy, supportive, enough room in the toe box, easy to put on (elasticized laces), etc.
As a bonus, they have some bright, super obnoxious colours... which I've found really helpful for my mood throughout this. If you can't be your usual mobile self, you can at least be *neon* while limping, right? LOL!
I started off with a neon yellow pair and a bright sky blue pair, and I recently bought another pair that's blue camo. Love em, HIGHLY recommend!
Looks like they have a discount offer for referrals, so I just signed up. You can use "MARIEPORTER" as a coupon code or click here to get 15% off.
At some point I got a Facebook ad for Archies arch support flip flops. (Yeah, I guess FB quickly figured out what I was going through, LOL).
Anyway, they sounded ridiculous, but were SUPER well reviewed and looked like they could solve the issue of "I need something on my foot, but the top of my foot is too swollen to get into a shoe" that I had for a LOT of the first year and a half.
So I bought a pair... and then 2 more. They're FANTASTIC.
Even to this day, I'll have days where I'm not feeling super mobile, I'm hobbling a little bit after a long hike the day before.. and just wearing them in the house seems to either support or loosen things up to the point where I'm not hobbling. A lot of the times, it's an INSTANT thing.
I am a barefoot walker by nature, but these are great for when your feet aren't as into barefoot as you are. I'll be wearing these as my default summer shoe for years to come, I'm sure!
Aside from getting around, I needed a bit more help to do things, especially when my husband wasn't around. (Admittedly not often, as this was all during COVID and he worked at home!)
Long shoe horn - I had a lot of trouble getting my shoes on at times, especially when I was still having heart palpitations. Bending over would make things so much worse. So, I bought this Long Metal Shoe Horn, which was fantastic.
I also bought a cheaper plastic one to keep up in my gym, and a smaller version for in my purse... but I definitely recommend spending the extra for steel (instead of plastic) and long.
This + the style of laces on those running shoes I talked about earlier went a LONG way to giving me a bit of normalcy.
Grabber Tool - I bought one of these 32 Inch Foldable Grabber. It took a bit of practice, but was handy for reaching things that were far enough away that it would mean stepping on my foot (that was having NONE OF IT).
When you can't stand or walk, simple things like turning the heat down, the air conditioner on, or adjusting the light switch can be a giant ordeal.
My husband quickly got sick of being my light switch person, so installed smart switches and outlets in key areas of our house. This put light, heat, and air conditioning literally at my fingertips, via a phone app.
I cannot tell you how helpful that was at the height of my tendon problems. Honestly, it's a pretty slick set up even without. We can turn the AC on before we get home on an out-of-nowhere hot day, turn the lights off/on from a distance if we forgot to, etc.
Here's what we are using:
Kasa Smart Dimmer Switch. We use this in the bedroom, livingroom, and office - the rooms that have lights with dimming options. I can turn them off or on and adjust the brightness level from the app, or at the switch.
This one requires someone with electrical skills - or an electrician - to install.
Kasa Smart Plug - We use these for the AC units in our bedroom and gym, the heater in the gym, a heater under my husband's desk, etc. LOVE THEM.
This is a simple on/off option and doesn't need anything special to install - you just plug it into the wall, and plug your appliance into it.
Emerson Sensi Wi-Fi Smart Thermostat - This is how I control the main heat and central air in the house, from my phone. It's also programmable if you want to adjust your temperature at certain time.
The nice thing was that we even got a nice energy rebate for installing a smart thermostat, so I definitely recommend checking to see if your area has a similar program.
This one does involve some low-voltage wiring work to install.
Can opener - It seems like such a minor thing, but this Swing-A-Way Can Opener made life a lot easier when the tendons in my wrists, fingers, and shoulders were acting up.
The long crank means far less effort / strain when using it.
Sleep was a CONSTANT battle for me. Before getting floxed, I was a sold 8 hour a night sleeper. Fluoroquinolone toxicity left me with HORRIBLE sleep issues.
At first, I was only getting a few hours of sleep a night, and not always in a solid block of sleep.
Over the first year or so, it took a LOT of experimentation to find out what actually helped me, and what didn’t.
What Worked for Me
One of the frustrating things about the sleep problems that have plagued me since taking Ciprofloxacin is that the sleeplessness almost seemed to adapt to whatever I threw at it.
I'd take one dose of a prescription sleep drug, get sleep that night... then it wouldn't work. A change of pillows would work for a while, then would all of a sudden seem more of a hindrance to sleep.
These are the things that had longer lasting effectiveness and were worth the investment, IMHO:
Weighted Blanket - We bought a Hush Blanket.
We bought the king sized "Iced" blanket - 35 lbs - even though we have a Queen sized bed.
Love the blanket - it DEFINITELY helps with sleep! - but I'd definitely recommend getting the actual size for your bed. Extra blanket = blanket pulls off the end/side of the bed!
Pregnancy Pillow - Someone had mentioned a pregnancy pillow as a potential help, so I bought this GIANT, ridiculous U shaped Meiz Full Body Pregnancy Pillow.
It was awkward, unwieldy, took up a huge portion of the bed... and OMG I slept like a dead person with it. It was AMAZING.
I slept on my side and would cross the two ends - think like "awareness ribbon" style - between my knees and sleep kind of in a fetal position like that.
Eventually I crossed the ends and bound them with some wide elastic to hold them in place - it was fussy to get into (especially with the weighted blanket involved! - But the sleep was amazing, and totally worth the fuss.
If I had to pinpoint the ONE thing that made the most difference, if someone was going to do ONE thing... I think it would be this pillow.
Mustard Bath - I can't remember how I heard of Barefoot Venus Mustard Bath - it was early on, before the pillow - but this was another one of those things that was downright magical.
It's an Epsom salt bath with mustard and some essential oils in it. I soak in it an hour or so before bed, and sleep like I was straight up drugged. Amazing stuff.
I was raving about it to some friends on Facebook, and one mentioned that she wouldn't be able to use it because of the chamomile, so I came up with this homemade Mustard Soak recipe for her.
Not quite as potent as the OG Barefoot Venus stuff, but gets the job done.
Seriously though, I've gone through SO MUCH of the BV product. I keep an eye on their site and buy a few KGs when it goes on sale. It's *gold*.
Like... knock me on my ass, DO NOT MAKE ANY PLANS, feel like I was drugged potent. Seriously worked better than any prescription sleep aid for me.
Note: The "drugged" feeling is such that I only take this when absolutely needed, and when I don't need a functioning brain the next morning.
Amazing stuff, but yeah.. very much "don't make any plans", for me!
Bedtime Routine Change
This one is kind of a grouping of other things - including lifestyle change - which has helped with my sleep as well as my (non-floxed) husband's sleep in general. We didn't do this until well into my recovery, so your mileage may vary.
It has DEFINITELY lessened the impact that flares have had on my sleep, though.
During the pandemic, my husband finished the attic space. It was intended to be for storage, but we converted it into a stretching / physiotherapy room for me (more on that in a bit).
On a bit of a lark, I bought a few things to make it dual purpose - stretching/weights/therapy during the day, and a kind of chill, spa-like oasis for just before bed.
I bought this Galaxy Projector with Remote Control, and would project this on the ceiling with the lights out.
I also bought this light up Essential Oil Diffuser and some lavender essential oil, which is set up in one corner.
Then, I set up a little tea table on the side of the gym - an electric tea kettle, a couple of teacups and saucers, teas, etc.
The projector has bluetooth speakers, so the music plays from it.
By the time he's done, we've got this whole spa thing on the go up there, and the tea water is ready. He pours the tea, we sip tea and stretch on our gym mats.
It's a really great way to end the day, chill out, etc... and it's done amazing things for our sleep.
I don't know how much of it is the specifics (lights, aromatherapy, etc) and how much is lifestyle (chill, stretch, etc)... but either way, highly recommend doing something similar if it's an option.
What Didn’t Work for Me
- Chamomile Tea
Now I want to say that there is a BIG caveat here - I'm both autistic and ADHD, and many meds/supplements tend to work on me in completely opposite the way they're supposed to.
Coffee knocks me out, but melatonin and chamomile tea are stimulants for me. Melatonin either did nothing or kept me up even worse than without it (hard to say), and chamomile tea is a HARDCORE stimulant for me.
In this case - unless you have a history of the same - your mileage is VERY likely to vary!!
Damn, this is getting long. I'll try to keep this section short and sweet - it IS pretty straightforward!
Fitbit - I bought a Fitbit Charge 4 to help keep track of my actual sleep over time.
When I was getting like 3 hours a night, broken sleep, etc... it could all kind of blend together, and I wasn't sure when I was dreaming of being awake (it happened, horrifying way to sleep!), or just.. forgetting.
It was nice to have actual recorded information of what was going on and when.
Blood pressure monitor - When I was having heart issues in the beginning, I bought this home Blood Pressure Monitor to keep an eye on things.
Cheap, easy to use, and accurate. Got the job done!
Pulse Oximeter - I bought this basic Pulse Oximeter for two reasons (and before I got the Fitbit) - to see what was going on when I was having palpitations in the early days of my fluoroquinolone toxicity, AND to have on hand because of the pandemic.
Cheap, easy to use, reliable. Probably a good thing to have on hand in general, these days!
Cipro left me not only with messed up tendons, but a lot of muscle weakness issues as well. I did some in-person physiotherapy, but did a LOT of work at home. These are the items that helped me the most:
Bun and Thigh Rocker - I bought a used Body by Jake Bun & Thigh Rocker for a very specific purpose - I could get a leg workout - or even cardio - without putting any pressure at all on the front of my feet.
There was a LONG spell of time where basically the ankles and up were fine, but the fronts of my feet were a total mess that wouldn't take any weight.
While this was the case, I used the bun and thigh rocker, and basically pushed from my heels, with my toes hanging up over the edge of the foot platform, so there would be NO pressure on them at all.
Yes, the machine is a bit hokey... but desperate times call for desperate measures, and it really helped!
I don't think these are even made any more, I bought this used off Kijiji for like $50.
Gazelle - This is another piece of exercise equipment that you'll need to look for used - you can usually get them for $15-50 on Craigslist or Kijiji.
It's not quite an elliptical, and it's not quite a ski machine... and it was PERFECT for the times when the motion of walking was problematic, but I wanted to get some cardio in.
When my achilles were still bad, I'd do in in shoes with a bit of a wedge heel. Sure, I looked ridiculous.. but it WORKED, and it felt like *freedom*. Low-impact freedom, at that!
I love that thing. Seriously, my husband wishes I’d get rid of it, but I will NEVER.
Having my tendons destroyed and losing all the strength in my feet and ankles meant a LOT of work regaining balance. My favourite pieces of equipment for that were:
Note really much to say on these in general - I started with the mat, worked my way through the rest.
Some were better for "good" days (Balance ball), sometimes I'd have to go back to that wobble mat on the bad days and after setbacks.
I was shocked at how weak I'd gotten, all over. My home gym was set up for normal weights, I had to make a couple purchases to accomodate my floxed situation:
Therapy Bands - I bought a set of Resistance Bands to do physio at home.
You'll want to consult with your own physiotherapist on what do do with them, for your particular injuries... mine was all variations of "Loop this under your foot to provide resistance while you push down, to the side, etc etc".
Dumbbells: I also bought this set of Amazon Basics Neoprene Dumbbells with Rack.
They're really lightweight - sets of 3, 5, and 8 lbs - but those can be SHOCKINGLY difficult after getting floxed.
I still have days where I'm using the 8 lbs weights for some of the upper body stuff, when my shoulder tendons are just NOT having it.
I know that many floxies have giant lists of supplement stacks that they take, but I kept mine very short, for a few reasons (including but not limited to avoiding a repeat of the Gluosamine issue, more on that in a second.)
Magnesium - Tried a few types, didn't notice much difference either way. Assuming it helped overall, long term?
CoQ10 - This worked really well for bringing the heart rate nonsense back into check
Electrolytes - I can't remember why exactly this was recommended, but probably because I was drinking a TON of water to try and flush whatever was causing the problems, the whole time.
I like the Biosteel Powders - all EXCEPT the white freeze and mixed berry ones. Those two are utterly nasty, IMHO.
(My husband agrees on the white freeze stuff, but he likes the mixed berry. Ew. I find it smells nauseatingly like bubble gum flavoured dental prepations. If that's your thing... have at it!)
BCAA - I was taking this before I got Ciproed, for an unrelated issue. (Nutritional deficiency that got misdiagnosed as Fibro. Went away IMMEDIATELY with the supplements).
It didn't cause any flares, and - given the nature of BCAAs - I have to think it helped.
I LOVE Revolution Nutrition's line of BCAAs, and have a massive stockpile of all the flavours.
Probiotics - Can't say I noticed a difference, but these are a good idea in general... ESPECIALLY given the nature of the original injury (antibiotics).
I used a few brands, I'd say go with what is available / well reviewed / etc.
What Didn’t Work for Me
Glucosamine. OMG. While I’ve taken Glucosamine in the past without incident, I made a HUGE mistake by taking it for my tendons after floxing.
It caused a flare, and I didn’t realize it was the issue. Several months later I tried glucosamine again, and it caused a MASSIVE flare - and this time it was obviously the glucosamine/chondroitin.
I looked back in the notes, and sure enough - I’d taken some before the other flare.
That said, other people have taken it without incident. As with everything else in fluroroquinolone toxicity... your mileage may vary. WILDLY.
I don’t want to dwell on this too much, as I have no idea how much it did... but FWIW I spent a good amount of floxed time either on the AIP (autoimmune protocol) diet, or Keto.
I haven’t really had much in the way of gluten since being Ciproed, and I know gluten sets other floxies off.
I also drink very little alcohol - and only rarely - because it stuffs my nose up and I HATE that. So, I don’t know if that impacts anything with my experience.
My HUGE improvements in early 2022 came after a few months on Keto. Not sure if there’s any correlation or causation there - it was after the 2 year mark, so I figure I was definitely due for some healing by then!
I didn’t end up with any of the (chemical) depression, anxiety, or other psych issues that many other floxies find themselves saddled with.
That said - as a suddenly crippled figure skater - I was definitely at risk for the situational varieties of depression and anxiety.
100%, I credit the amount of Eurodance I listen to with maintaining my mental health and positive outlook... and I think the fact that I was able to keep positive had a good impact on my recovery.
In particular, I listened to:
Seriously, I’d say a good half of my recovery music was just “You’re a Superstar” alone.
I hope that Simone Denny has some sort of idea of how much joy and help that song has brought to people, even beyond me.
I will never forget that song coming over the radio or my MP3 player at key points in my recovery and just... breaking me down completely. Powerful stuff.
Some day, I would like to bake her a cake in thanks.
(But really all of it, I have all of their albums)
Even got to see them perform in 2021 - a bucket list item since the mid 90s. AMAZING.
- Z103.5, a local radio station that streams online as well. They play a LOT of Euro, especially at noon, at 5pm, and on Wednesdays in general.
This is the crappiest recommendation, because it’s the hardest one, and the one you’ve got the least amount of control over.
I’m used to being able to either brain or muscle my way out of anything. ANYTHING.
This whole cipro thing threw me for a loop because for the most part... you really just have to wait it out. It’s frustrating and infuriating, but I learned early on... you really can’t muscle through it.
When I was in a flare, I really HAD to stop everything and not work on it at all. I had to let a flare run its course, THEN rehab from the flare, then - hopefully - gain a bit more ground before the next flare / setback.
It’s been over 2 years of “2 steps forward, 1 step back”, but slowly and surely, I’ve gotten (mostly?) Better.
Things are still a bit of a work in progress, but the flares are fewer and further between, they’re less vicious, and easier to recover from.
If you’re in this position, I definitely recommend extending yourself ALL the grace and time you can. I’d say “it’s a marathon, not a sprint”, but that’s such a crappy thing to say when you’re talking about being stuck on the couch, you know?
Anyway, this has gotten incredibly long, but - like I said - I had over 2 years of experience to dump on you!
I hope this helps even one person who’s going through this, I wouldn’t wish cipro toxicity on my worst enemy.
What have you found that helps - or DOESN’T help - in your case?
My Floxed Timeline
For the first year and a half or so, I kept a regular diary of symptoms and improvements. Here are the links to those posts:
...After the 20th month, things started to turn a corner. I stopped writing in my Cipro diary, and started blogging about my recovery - and I DO seem to be in actual recovery, now.
A lot of my "therapy" after the 20th month has been just walking and hiking, and I've been making HUGE progress!
Also, you can see how I'm doing in general by seeing the All Blog Posts category.