*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
I wanted to give an update here (10 1/2 weeks post Rx) to give other people hope – as I check in often to see if there have been any new stories posted.
To let you know where I was just weeks after my prescription: I had what I can only describe as peripheral neuropathy, pains in my arms and legs that would crop up and disappear many times throughout the days. I had pain in the tendons of both forearms, and in my pointer finger after “exerting” it. I had pain in the top of my foot when I walked and in my calf, as well as achilles. Even while sitting, I could feel the tendons in my thighs hurting. They would ache at times when I walked. Lots of anxiety, and I cried easily every single day and very foggy minded. The insomnia- I could only sleep about 4 hours a night (with night sweats and nightmares). There were two occasions where when doing simple movement of my legs, I felt something ‘pulling/tearing’ inside, a sensation I had never felt in my life. It was not painful, but the next day I would feel the pain or on and off for the next few weeks. One was the side of my knee, the other was the back of my thigh. One of my saggital bands (top of the knuckle where the finger meets the hand) suddenly started to slide off my knuckle and to the side. It was not painful. My appetite was gone, and I lost 13lbs in one months because I didn’t want to eat, and I didn’t have 13lbs to lose, so this was disconcerting.
I am a college student in my final year and had to dropped two courses due to the pain in my forearms and I did not want to make them worse. I’m a fine arts major, a lot of hands on work. Luckily, I’m still full-time and I will still graduate on time, though next semester will just be much more work than I anticipated.
The good news: I have not had any pulling or tearing sensations in any part of my body for over 8 weeks. It seems that my body, at least, was most frail in the following couple weeks after taking my Rx. The saggital band is still the same, but has not worsened nor do I feel pain here. The neuropathy has mostly subsided, with only occasional fleeting pain. This is usually when I am very, very tired. The insomnia has also subsided, with only one night in the past 4 weeks where I awoke and could not fall back asleep (and no more night sweats!). I no longer feel very anxious nor depressed, but I do have days where I have that fogginess. I hear this eventually passes, so looking forward to that! The pain in my calf and foot have subsided with hints of an ache on occasion. Some days the achilles acts up, but it is very manageable. No more tendon pain in my legs from just sitting. My forearms ache at times, but not near to the point they did initially. It is passing and very tolerable. I also have my appetite back! And the weight! I know that my body is healing, just comparing myself to where I was only 8 weeks ago.
When I was most desperate for sleep, I never took anything to help me fall back asleep. No anti-histamines, melatonin, prescriptions, etc. Nothing. I wanted my brain to eventually work it out on its own (though every site you may find will tell you insomnia doesn’t go away on its own, I refused to believe this). Instead, I walked some everyday (always outdoors) and made sure I was in bed at the same time every night. Eventually, it regulated.
I stretch every single day, every part of my body. It is worth the extra time it takes me every morning. It has been so helpful, even if I have pain in an area, I stretch it, though gently.
I don’t take anything for pain, not even tylenol. I have also cut out caffeine, but have coffee as a treat sometimes. I don’t drink much alcohol now. One night, I had a bit too much fun with friends, and let’s just say I was paying for it the next week instead of just the next day! Mostly mental fogginess, but I did notice neuropathic pain reappeared as well as some tendon pain.
Starting the semester being recently floxed was very hard. There were times where I wanted to give up, or not get out of bed or get dressed, or just not continue with life. That was not me. What added to this hopelessness was reading stories about worst-case-scenarios in which the author declared to me that my life was officially over.
No matter what, I always got out of bed, got dressed, put on my makeup, and went where I needed to be, again, no matter what. Continue with life. Do something that counts and makes you feel good. Your life is not over. I thought mine was just weeks ago, and now I am very excited for my future again. I’m walking three miles everyday, easily, and have three art exhibitions coming up, have completed many paintings, started an internship, am in school full-time and work part-time. Every day is not perfect, but before being floxed, every day wasn’t either. Life is good, and we will be okay.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Janet, did your pains go away that were similar to fibro pain with the Cipro? Does it feel like your bones ache? I don’t know what kind of pain that is, haha!
Thanks, I’ll look into uridine. Never heard of it. I had a relapse after my last period. But what really gives me relapses if getting sick. It’s like the second I don’t have the cold anymore, “Here we go again!” But no relapse has been as bad as my initial symptoms, and the most recent relapse got steadily better as I pushed magnesium again. I keep making the mistake of thinking this is done and I just eat healthy or just take one pill. At times I’ve had my blood level of magnesium high enough that supplementing made me feel worse. “Good,” I thought. “I’m done with this now.” Nope. It’s weird, because you’d think if my blood level could read high normal (it did) that I’d be ok, but I had definite symptoms of magnesium deficiency a few weeks after that, which were all relieved by pushing magnesium again. That’s why I think the chelation effect does terrible things to us, taking magnesium in a way our body never would have, so our bodies don’t naturally put it back quickly or hang onto it in a normal way. Eventually, this must reverse itself for most people, since most people do get better. You can’t rush it, as I did trying to take too much magnesium, then thinking if I could get too much I must be all right. It’s like getting water into the little hole in my clothes iron. Pour it in too fast and it goes all over the place. You have to trickle it in patiently, and then it fills up. My body is slowly taking up magnesium again. I now spread my supplementing out, a little at a time through the day and I don’t go overboard with it.
Hi Crystal! Did you have a weird taste in your mouth after being around the smoke for too long when your neuropathy acted up? That happened to me last night and now the horrible taste will no go away!
Hey Amy,
I’ve luckily never had trouble with my taste at any time – sorry that you’re having trouble! My neuropathy is acting up today though. It’s such a bummer because I was doing well for so long! I have buzzing in my left foot and random pricks of pain all around my body. Super annoying…When I keep myself busy I don’t notice it, but it’s when I’m trying to relax that it becomes apparent. I wonder if this will be a lifelong issue of cropping up, it’s been almost exactly 9 months now.
I can’t wait for the day when this will be off the market and us Floxies will finally have some acknowledgement and understanding from the general public. Some of my friends don’t understand why I won’t go to the doctor to get treated (they don’t understand that there is no treatment!) and therefore they don’t treat it as seriously.
Hey Crystal! I am so sorry you are experiencing set backs. Keep your head up! I’m praying for you! Maybe it’s just a cycle and won’t last too long. I know how you feel when it all comes back. It’s so weird b/c at about the same time you had your neuropathy set back I had one at 14 weeks also after being around smoke! Now the tendons hurt all over again! I am praying this will all go away one day but it’s hard to stay positive when it keeps coming back! I am trying Plexus right now (it has alpha lipoic acid in it) Heard it helps fibromyalgia sufferers so hoping maybe it will help and give me some energy!!!
Hey guys,
It’s me checking in again! Sooo…in my earlier posts I mentioned gaining back the weight that I lost and er, I think I gained an extra 10 pounds since then. Tomorrow I’m starting up walking 3 miles daily again, and am a little nervous as to how my muscles and tendons will perform! This winter was a mess, so all physical activity went by the wayside.
I’ll let you guys know how I do – nerve pain is very minimal, hasn’t acted up in about a week. I do on occasion have a shooting pain in my right leg – acts up about once every few weeks or month – used to be several times-a-day, almost like a shocking sensation. It was very, very slight today, whoo hoo!
P.S. after being floxed going into my senior year of college, I graduated Summa Cum Laude a couple weeks ago!
Lyndsey,
I was like you for about a month– joints unstable, very weak, it hurt to stand, everything got tight all the time, and my teeth were very loose, brittle and sensitive to temperature. By the second month those things were quite a bit better. I’m three months and a few days out now and my body feels normal. Normal muscle tone, I’m building muscle again, I can stand for long periods, teeth aren’t so sensitive, but they still loosen up and then and then tighten up again. My ankles get tight. My left Achilles’ tendon is getting better though.
I think my symptoms now are due to downgrading of GABA receptors– even my tight ankles are from a damaged CNS. They seem to only get tight if I relax or walk too much.
Initially, when I was tightening up a lot I found that using my body normally loosened it up. I think that’s from magnesium rushing out and calcium rushing in. You gotta clear all those calcium crystals that are sitting in the muscles. Muscle contractions help. I’d feel like I’d sprained my ankle, walk normally a little and it felt fine. Same for wrists, hands, you name it– moving it helped. Also putting magnesium on my skin right where it was tight or hurt and doing lots of ultrasound seemed to speed up the process.
Strong magnesium baths helped. Getting as much magnesium as I could tolerate into me as quickly as I could helped tremendously.
That alone won’t fix a damaged CNS or mitochondrial damage. But it helped with the joint stability, muscle tone, and gave me back my ability to exercise. But I also suspect I was mildly floxed and got off lucky. And I have a lot of testosterone for a woman (my saliva test for hormone replacement therapy confirmed it) so I build muscle very fast and a lot of it.
Dr. Whitcomb is always saying not to be afraid of too much magnesium if your kidneys are healthy. They will clear it if you get too much. I try to take a little at a time throughout the day because what good is it if I pee it out? Too much at once will give you diarrhea also. Some people like angstrom magnesium because it won’t cause the GI problems other forms can.
Hope that helps!
Ruth
Ruth,
Thank you for your reply! This information is helpful; our stories are very similar. How do you fix CNS and mitochondrial damage? Thanks!
Lyndsey,
I think mostly time, and I think Lisa will tell you the same thing.
I believe L-Theanine is helping to heal me and I think it’s because it increases dopamine. Dopamine might be the key. There’s no research to back this up. Most researchers just work in proving FQ’s cause the damage they do and in explaining why this damage occurs. There’s very little out there done to research a cure. No wonder. Most doctors don’t believe it happens!
I take Idebenone, MitoQ, and PQQ. I can’t prove they work, but my recovery has been quite swift, considering where I started. I also am hoping Calm PRT, like Theanine, is doing more than making symptoms tolerable. I again have no proof, only theories and the fact that I’m feeling pretty good most days.
I would just avoid anything that binds to GABA receptors and focus on anything that gives you more dopamine, which includes pleasurable activities. I find music from the classical period helps– Mozart, Beethoven, Haydn. Baroque music makes me worse, except for the slow movements. There is something about the logic, order and balance of the classical period that seems to be healing to my damaged CNS. But everybody is different and FQ’s damage us by more than one mechanism.
Is it magnesium deficiency? Is it an imbalance between calcium, magnesium and zinc? (FQ’s can float all of these right out of your body, but they seem to prefer to bind with magnesium.) Is it truly mitochondrial damage or just the downgrading of GABA receptors? Or is it the fluoride, as some suggest?
What I do is try not to panic, but just follow my routine of supplements, topical magnesium and magnesium baths, good nutrition, ultrasound where it’s tight or sore, lots of down time including meditation, listening to music and being in nature, and getting my exercise and stretching in every day, to whatever extent I’m able. I try to just follow my routines and not panic when symptoms flare. I know I’m doing all I can at this point and time is my friend. I also know I’m very lucky. I just walked for about forty minutes and could have done more. My damaged CNS is still making me feel anxious when I’m not and giving me burning sensations all over my body. But I can exercise and that helps to heal the CNS damage. People in protracted Benzo withdrawal are advised to exercise. The horrible thing about FQ’s is that they damage you in the same way as Benzo’s but can also leave you physically disabled. Why doctors are still prescribing them is beyond me.
Mark, I like the green the best because it dissolves in liquid. The red is good if you want to make Jell-O or desserts. What I have read suggests that your body assimilates more nutrients from the green one which is another reason it’s my favorite. A good probiotic is important right now too. I did two weeks of 200 billion and dropped to 100. The 200 knocked out my brain fog in a few days. And I can’t stress healthy diet enough.
HI Crystal! How long did your anxiety last? Mine went away for a good month and is now back full force when pain returned! I am almost 5 months out now. 🙂 Thanks!
Lyndsey- how far out are you and how much did you take? I know everyone is different, but just curious. 🙂 Ruth- I have the same exact psych symptoms that are so much better, but I am having a cycle right now where violent images/ sad things on tv are really getting to me and make me feel sick to my stomach and cause panic. I wonder if these ever heal??? Thanks!
April 21st was my last dose so…6 almost 7 weeks. I took 500mg 2x day for 7 days. Several years ago I took 2 weeks of Avelox and the year before that they injected an FQ in me along with a steroid. All three times put me in the ER when symptoms hit followed by lots of testing. I recovered each time, but it took this 3rd time to realize the antibiotic was the culprit. I’m sorry you are having psych symptoms. Those are so disturbing; I hope it will be a quick cycle for you!
Thank you Lyndsey! So you have recovered every time? That’s good to know! Did you have psych symptoms, if so how long did they last?
Mark,
I think so long as you avoid caffeine, MSG, highly processed refined carbs and sugars and artificial sweeteners you will be fine. Some people develop gluten intolerance post floxing, but I just read an article that said gluten intolerance is a symptom of vitamin C deficiency. Vitamin C is something we really need to heal anyway– it helps with tendon healing and we do need antioxidants after floxing. So if you get enough vitamin C I think wheat products in small amounts would be ok. They do increase inflammation for everyone, or so I’ve heard, so I try not to go overboard with bread. I need to lose weight so carbs aren’t my friends right now anyway.
Some people are keen to avoid meat from animals that might have been given FQ antibiotics. I don’t worry about it. Any place that is cramming animals into dirty conditions requiring the use of FQ’s to keep them alive will not waste any money giving an antibiotic close to slaughter. They are all about maximizing profits. Also, they cannot legally send them to slaughter with the antibiotic in their system. Nor can a cow be milked who was given an antibiotic. My husband worked for a feed mill in Darboy and got to know all about farming while working there. He said there’s no way FQ’s are in meat, milk or eggs. Even were the FQ still in the meat, heat from cooking would destroy it. If you’re still worried, take a magnesium pill with dinner. They say not to take magnesium with Cipro, because magnesium deactivates Cipro.
We buy our meat from Haen’s in Darboy, because they only buy animals that actually were able to graze, to live normally as cows should live. I avoid meat from animals that spent their whole lives crammed into tight filthy conditions being forced fed to get them quickly to market because such treatment of animals is unethical, not because I worry that I will be poisoned by the same FQ’s they were poisoned with.
Aspartame (Nutrasweet) affects excitatory receptors, so for a person just having taken a drug that’s known to damage GABA receptors, you don’t want that.
I have heard they are all bad for you, but I don’t know the chemistry or biology behind the reasons why. I have had some things with artificial sweeteners since being floxed, but never aspartame.
The others are probably ok unless you notice they flare your symptoms.
Hello there, I was prescribed cipro 500 for an undiagnosed stomach condition, the doc was quite vague with me when inquiring about the medication. so far I’m about 60 hours out from my last dose and I have random muscle tenderness that goes away and minimal joint pain. I’m currently deployed to Afghanistan so if this were to become full fledged I’d be quite scared. The pain isn’t increasing nor is it becoming more current, its just kind of stagnant.
I appreciate your prompt response, I had actually unknowingly taken a low dose ibuprofen once during the cipro cycle. Is there a chance that I could still just be having light symptoms and do some people typically see side effects that happen not to worsen?
Well it’s comforting to read these testimonials and to see other people’s optimism. Had I not been prescribed this crazy antibiotic, I would have never known of your website. So regardless of the severity of my symptoms, I hope that I can support and represent your community as a military member. I’m sure many veterans have been affected throughout the years and are diagnosed with something completely different.
Bobby, how did you end up?