This story has been a long time coming. It was over three years ago that I became the victim of Cipro, and my healing has taken a long time. I didn’t want to tell my story until I was what I considered healed.
I’m a 39 year old husband and father of two. I’m also a Toronto wedding photographer, and was one of the top in Toronto before becoming floxed. If anyone’s interested, you can see what I do here: www.jamiesondean.com. If you do check it out, you’ll notice a period where I wasn’t very active from 2014 until just this year…
Back in February of 2012 I had developed prostate inflammation directly following a vasectomy. The urologist who performed the procedure gave me Cipro. During a visit to my family doctor a few days later for some strange new pains, I was taken off of Cipro and put of a different antibiotic for the prostatitis. I didn’t think much of it, and moved-on with my life. A year and a half later, 2014 I was dealing with the return of a stubborn bout of prostatitis. I saw a specialist who put me back on Cipro; 500mg, twice a day for two weeks. I didn’t realize at the time, but this prescription was about to change my life.
I was about four days into the prescription when I noticed that I was having a hard time seeing. I was seeing blurry, slightly doubled vision with the sudden development of an overwhelming amount of eye floaters in both eyes. I barely had time to come to terms with this before what called the great three day headache from hell hit me.
This was not a normal headache. As someone who has dealt with migraines most of my life, something was wrong and I knew it. It felt like my brain was being boiled in battery acid. I took Advil, and more Advil, to no affect (and later realizing that was possibly as big a mistake as taking the Cipro in the first place).
At the end of three days with this unfathomable headache, I was left with the feeling that I was damaged. The back of my head was numb and I felt like I was wearing a hat at all times. I was extremely dizzy. I could barely see though blurred vision and heavy floaters. I had a loud never ending ringing in my left ear… I felt like I was in a bubble, with a new layer in-between me and reality.
I went to the ER, and after a 7 hour wait was told that everything is fine. I went to my doctor and was told that I will be okay in a week. Unfortunately, not only would I not recover in a week, but the worst was still to come. A dark, heavy blanket of persisting, extreme fatigue would make soldering-on with life and work impossible.
In the months following, I developed the following symptoms:
-Persistent dizziness/vertigo
-Blurry vision with lots of eye floaters
-Ringing in my ears
-Extreme fatigue
-Depersonalization/ derealization
-Deep aching in both legs, especially the backs of my ankles
-Aching ribs
-Insomnia
-Anxiety and depression (though possibly the consequence of the other plethora of symptoms)
-Thryroid cysts
-Memory loss/inability to think clearly
-Weight loss
By May of 2014 I was down to 138lbs. I am 6’1, and was 160lbs before being poisoned. I had new symptoms showing up every week. I was being sent from one specialist to the next, and the next. Doctors, Neurologists, Thyroid Specialists, Opthamologists, Infectious Disease Specialists, and eventually Phycologists. None would admit that Cipro could cause what I was experiencing, and therefore, I really got nowhere with any of them. The only common recommendation between them was that I take antidepressants, which I refused.
I spent the next two and a half years of my life trying various diets, supplements, avoidances, and lifestyle changes. I experienced symptoms cycling, waxing and waning. I saw improvements and relapses. I gained hope, lost hope, and gained it again, over and over. I pressed on though, and feel like I’m finally at a place where I know what has helped, what hasn’t, and what I can expect. I’d like to share these things here, as I know that reading about what others experienced and did to improve was monumental in my own process. Sometimes even just reading the stories of others and knowing that I wasn’t alone was more help than anything.
What didn’t help
We all know that no doctor was able to help in any way. Against what many here have had luck with, I didn’t find that any supplements or medications helped me in any regard.
I also found that chasing diagnosis led to needless stress and frustration. Thinking that it could be something identifiable and treatable, or that maybe the doctors are correct, and that it was not the Cipro but rather something else was just a wild goose chase. They ran tests for Thyroid function, testosterone levels, anaemia, lyme disease, MS, diabetes, and anything else that could make sense. My doctor believed that I have a “non-specific auto immune disease”.
I tried seeing a naturopath who immediately “diagnosed” me with Candida and put me on a ridiculous diet. I gave it the benefit of the doubt, but after sticking to it for a very long six weeks, I felt much worse. She decided it couldn’t be Candida if six weeks on this extremely strict diet had no positive impact.
What did help
Now for the good stuff! My first big breakthough came from quitting coffee. Although I was dealing with extreme fatigue, coffee just fuelled anxiety and put unneeded stress on my nervous system. I switched from coffee to green tea, which is loaded with antioxidants and the difference was instant. At first I felt even more fatigued, but this allowed me to truly rest, and calm down.
Meditation was another help. Just learning to recenter myself and breathe.
A HUGE jump in my recovery came after watching Dr Terry Wahls Ted Talk on Minding Your Mitochondria. This made so much sense to me; getting vitamins from food instead of supplements. I learned that produce consumes its own nutrients after being pick and transported, so I decided to build a garden and grow my own. I did my own research into what the brain and body need, and created a super-food smoothie that gave me every vitamin, mineral and nutrient that I could need without any supplements in pill form. I did take Greens+, as I just can’t ignore the amount of antioxidants that is provides and the independent studies that have concluded it’s effectiveness. Taking fresh fruits and vegetables from the garden and making smoothies everyday, I saw more stable returns in my recovery. Here’s the smoothie I have had almost every day for the past 10 months: banana, kale, mixed berries, greens+, coconut oil, avocado oil, orange juice, chia seeds.
Finally, I kept the fake it ’till you make it attitude. I noticed that when I sat around, feeling my symptoms, I would feed them. If I was out shooting a wedding, I would at times forget about my symptoms for short periods. You know how you can sometimes have a cut and won’t know it until you see it? Sometime’s you have to just forget about the issues and distract yourself by fully engaging in activities. Doing this brought hope. I knew that even if I didn’t feel 100%, I could at least fake it. I could work. I could still provide for my family.
Exercise and exertion, as well as ample rest vs too much rest, are a bit of a game you play with your recovery. In the beginning, it was rest that I needed more than anything. Any exercise would basically have me blacked-out on the floor. After the first year, I learned that exertion will cause a negative cycle, but with plenty of rest I would get back to positive cycles. It’s a fact that flouroquinolones damage your mitochondrial DNA. This destroys your energy levels, making exercise very difficult. The catch is that in order to repair our mitochondrial DNA, we need mitochondrial biogenesis, and one of the best ways to stimulate this is through exercise.
What has healed, and what hasn’t
At this point, over three years after taking Cipro, I tell people that I’m 99% recovered. That 1% that I still deal with is the fact that I do still experience mild cycles if I neglect my good habits and let negative habits trickle in. I was able to drink alcohol again after a couple of years. This was something that I approached with caution, as it could set me back on a negative cycle. Eventually, I embraced the cycles. They are shorter and less intense each time. Cycles are a part of the recovery, and although they can be disappointing, it’s important not to be discouraged.
My vision still suffers, which really sucks as a photographer. I still have lots of annoying eye floaters, but my double vision has improved somewhat.
I still get dizzy from time to time, but it’s not like it was at it’s worst. At it’s worst, I couldn’t drive, as it felt like I was on a roller coaster in the middle of a stormy sea. Nowadays it’s more like the feeing that I just spun around three times and can manage.
Chatting with Lisa a couple of times really pulled me out of a dark place. I don’t know how I would have gotten through this without this site. This is why I feel like I owe it to this site to share my story. I know it’s difficult. I know it’s not fair. You did nothing wrong, and you don’t deserve this. I sometimes felt guilty that I couldn’t function, or that I should have known better. That’s rubbish. You were the victim, and unless you were taking flouroquinolones for a life-threatening infection, this should never have happened to you.
** 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.
Hi there
Went through almost the exact same thing when I was flocked I’m 10 years out. I took only one pill and knew something wasn’t right by the next morning I felt like I was walking in sand like someone had a hold of my ankles it only got worse from there. I lost 50 lbs in 2 months but I was also having problems swallowing like my muscles weren’t working to swallow I had no appetite and lived in boost drinks. Extreme anxiety, insomnia eye floaters a whole list of problems I also have diabetes now as a result of this medication. All the doctors thought I was crazy and Cipro didn’t cause this but I know I was a whole different person the day before I took it. I still take medication for all the side effects anxiety meds diabetes and thyroid medication. But I can tell you trazadine is life changer for the insomnia I’m not a pill taker but it made my sleep cycle come back and I take celexa for anxiety also both good medications. The derealization it comes back every couple years especially when under a lot of stress but at least it’s not as bad as the beginning it gets better and shorter each time. But when I was floxed the doctors say they never heard of the side effects. I hope it gets better for you it’s a horrible thing to go through but it does get better it just sucks having to take the medication for the rest of my life .
Sorry it’s trazadone for sleep not trazadine
I was floxed back in 2006 with two pills of Avelox. Took that because I was too scared to take bactrim. One hous after second pills my legs started feeling weak, I could barely get up and walk. Over 30 different side effects, lost weight from 150 to 128 in 3 weeks. Total complete insomnia, as soon as I started to fall asleep my mind would get a jolt and snap awake. Everything from leg weakness and muscle burning, terrible vibrations inside legs, feeling like I was jumping out of my skin, feeling full and bloated for hours after a few spoonfulls of cereal, popping sensations inside top of head, complete exercise intolerance (and I was a healthy gym rat), and on and on and on. 16 years later I cannot even recall some of the bizzare sensations. Thought it was over after 6 months, then the cycling started 3 months later with relapses and new symptoms lasting 2 to 3 months, go away for 3 months, then come back…for 12 straight years of hell. No doctor believed me, One said I had the flu…yup, the flu…total failure of western medicine.
Hi! I have noticed that in the evenings my symptoms are relieved, and sometimes I feel like I am old again. No anxiety – or just very small. But during the day i’m anxious again – Why?? And nowadays after 18month of poisoning in the mornings I’m not able to wake up… I don’t drink coffee, and any alcohole since 18month but still struggling 🙂
Hi! My name is Attila from Hungary/Budapest. I was poisoned with high dose of fluconazole wich contain also fluoride. In 2017 december my symptoms appeared. Heart attacks – 3 times on the ER, horrible tinnitus, light and sound sensitivity, insomnia (8 days without sleeping -0 minutes), nightmares, hallucinations (visual and auditory), depression, brutal anxiety, hot falshes all over my body, flu like symptoms, depersonalization, derealization, electricity in my brain (zapps i think) etc… Today Im 1 year, 6 months, 12 days after this hell. My remaining symptoms is tinnitus “hissing in the head” (3 on 10 scale), auditory hallucinations when I try to fall asleep, and every third days anxiety 🙂 So this is my story.
Your early days sound much like mine (then add in a lot of other physical issues) In fact, I didn’t sleep for two weeks, and then even with pills only an hour or two for months.
My tinnitus remains along with a half dozen other side effects. It’s gotten worse, but the level varies week to week. It is a kind of hissing, buzzing, humming sound. I too had (and still have) light sensitivity both outside and under fluorescent lights and olfactory sensitivity. Interestingly, very early on, I remember someone had written that they could “hear the electrical wiring in the walls.” I remember thinking “well ok, I guess that makes sense since I could then smell things that NO ONE else could smell. Only in retrospect, I think that person actually had tinnitus.
Thank you for answering. I feel that I was close to death due to heart attacks, but ultimately survived. I didn’t know for a long time what was happend with me. My family was in full doubt :((((((
8 years ago I stopped taking benzodiazepines and SSRI-s (Cold Turkey), then it took about 4 years to be again normal and I thought it would never happen again to me.
It may be God’s will to be a better man or to learn from my mistakes or to gain strength. I don’t know – it’s a sad story i think.
All of us history is sad at some level.
But as I survived then I have to survive again. Somehow I have to forgive my doctor. To forgive again…
Hello maybe you can send me link where I will can buy green+????
Not sure you meant to reply to me. I don’t know what you mean by “green”
Greens +, i dont know which I should choose from the internet, maybe you can send mi website to this product? 🙂
I have no idea what this product is. You need to reply to whoever posted about it. Sorry.
I had almost the same symptoms like you. There is no point of visiting doctors I am so disappointed. That’s why I quit visiting doctors. The last time I visited a doctor was around this time last year and I heard from all of them stuff like “Everything with is normal” “You are healthy what do you wanna heal” “What pain blood tests are nromal, rmi normal, there is no reason to feel pain” “What??? Levaquin is a good antibiotic and it is healping a lot os people (maybe she meant help people get crazy)” and many more I am glad that we are strang now and there so many materials on the internet and so many TV pay attention on that problem. I also believe everyone will recover. WE WILL RECOVER BECAUSE WE ARE UNITED. GOD BLESS US FLOXIE FRIENDS WE ARE STORNG WE ARE POWER.
Victoria do you still have depersonalization and derealization. I’ve had that for 14 months straight now. Starting to get worried . Has it left you ? I hate it .
Debra,
I don’t recall if I’ve ever had those issues. all my issues have been ruptured tendons in the beginning and pulling muscles and tendons very easily. I was floxed back in 2011 and have been on a roller coaster since. I have good periods and just when I think I have it figured out I go back two steps. I’m constantly doing research to improve and heal my self. It really sounds like you may be having panic attacks. I know in the beginning I had them especially when I started looking on the internet. I refuse to go to those sites anymore because my brain can only handle positive feedback and the hope of improving more and more as time goes on.
I don’t have the body tendons . My issues are all weird. Muffled hearing , brain fog, body weakness , feeling sick , breathing issues , heavy legs, all strange shit
Hey Ahmed my stuff sound similar to yours . Sigh anyone recover from this?
Anyone have food intolerances? I eat organic and I still get the worst food intolerances. They make me feel super weak , nauseous and unwell . Also will fall asleep at night only to jolt awake every 30 minutes feeling like I’m dying.
Debra and Mark, you seem to have identical symptoms. perhaps you should discuss them with each other.
Mark can you please tell me what helped / worked ? Thanks
Hey guys I just read mito q causes kidney damage . Anyone take this !? Any issues from mito q? Please advice
Its funny that you ask that questions because I’ve been taking MitoQ for just over a month and saw an article claiming the same thing so I emailed MitoQ. This was their resposse:
“There was a paper published recently which brought some concern around MitoQ and the potential for adverse events or even harm to kidney health.
We have thoroughly evaluated this study and can confidently advise you that the results of this paper were the result of highly irregular MitoQ administration in a controlled test tube environment.
This was not a human clinical trial and the dosage delivered in this study was hundreds of times higher than what we recommend for MitoQ supplementation. Unfortunately, this study has brought about significant confusion around the safety and side-effect profile of MitoQ.
We have an enormous amount of clinical evidence (over 300 published trials and reviews – please search the PubMed repository at your leisure to validate this) supporting a very favorable side-effect profile for our products.
In one clinical trial https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1478-3231.2010.02250.x subjects took 40 or 80mg/day for up to a year, which is a considerably higher dose than recommended for the supplement, with no significant side-effects.
MitoQ has been extensively evaluated for safety and there are well over a dozen mouse studies done in kidney health.
We appreciate that this is a valid concern and again, thank you for taking the time to review this response”.
Hope this helps. I understand that its hard to trust anyone anymore when it seems that profit is more important then anything else.
Paul
Hey Paul I know I’m really confused . Maybe we shouldn’t risk it. We have enough issues as is being floxed . Just take Pqq I took that last night . I guess it would be safer ….. paul do you have any of my symptoms. No one seems to have them and except for a few people on here who don’t really elaborate on them.
I’ve been taking if for three years now with no issues.
Ok then I’ll take it . I have lack of oxygen today I feel like I’m going to pass out. Really worried and light headed . Pulse ox says 100. I don’t know what the hell happened to my chest muscles throat breathing but I’m really scared. Someone please tell me if this is normal and passes for floxing . Super worried and super weak and shaky from lack of air.
Hi L I’m seeing a lot of people on here have breathing issues. I too have them. They just started . I fall asleep and after fifteen minutes or so my entire throat is closer shut so bad . I wake up and sit up and it takes a few minutes to ease up. My physician at kaiser (where I got floxed ) told me I have sleep apnea and need a cpap machine ? For those with breathing issues does that sound right ? I don’t think it’s apnea. It’s not just my throat that closes it’s like I totally stop breathing . Super confused. How do I make this better ? Please help . I can’t take supplements they make me feel sick .
I’m not sure. That doesn’t sound like the same kind of breathing issue I had. But wouldn’t go back to the doctor who poisoned me to begin with.
Hey L and people on here I’m kind of new to floxing . Just barely now trying to figure out what happened to my body . I’m six months in . Someone told me that I have severe severe muscle weakness due to mitochondria damage ? Can this be reversed and is it fatal ? I use a cane and I can not walk due to severe all over body fragility . I am also so fatigued I yawn constantly and tired . At night I wake up gasping or ill wake frequently . Someone else said this is cortisol spokes or perhaps adrenal glands ? First and foremost I need some advice on the dverrr body weakness and mito stuff and last but not least is any of floxing fatal ? I’m to far out I think for anything sinister . Thanks ! Descriptions of people’s weakness etc would be help .
Not sure what to tell you Mark. Yes, it may be mitochondrial damage causing the fatigue and other issues. I would suggest mito supplements like ubiquinol, pqq, R alpha lipoic acid. There are others, you can find through a search. The insomnia is also normal and will subside eventually.
L my insomnia consists of waking up literally every 30 minutes. Is it like that for you as well ? Or was? I’ll sleep wake up sleep wake up . My eye hits the clock each time I wake up and sure enough I wake every thirty minutes .
no, mine was total. just did not sleep period. it finally subsided
Hi Mark, I had terrible insomnia after being floxed. I took a supplement called “Deep Sleep”. It really helped. I don’t have it as bad and now use melatonin 2.5mg per night before bed. After the first 6 months things improved and I slept better. Good luck.
Trazadone will get you back on a sleep pattern just asking but when you wake up do feel like your heart racing or an adrenaline feeling
Wonderful this is all helpful . L I have like what I feels like an extended stomach and it affects my breathing. There are times where I feel like I double breathe . Don’t Breathe , or tell my brain to breathe it’s scary. Or I’ll eat but I can’t breathe literlat . I see a lot of people on here have that sadly . Did you have it like this and did it leave ? I don’t know what happened to my stomach muscles either as it has severely affected the way I breathe as well etc .
no
Hi L or anyone here. I have a few symptoms and haven’t been able to find others with them. I feel like my throat , stomach , and chest muscles or maybe nerves don’t work properly? It’s almost as if I have no control over my stomach muscles or breathing . Really scary . It leaves me breathless or at times freaking out. It will feel like I’m not receiving oxygen when I am? Not sure if that makes sense . Any advice would suffice . Thanks
well all my breathing issues were higher than the stomach. I suspect either nerve damage, of which I had a lot, or mitochondrial damage. It was terrifying but eventually corrected itself. One way to tell if you are receiving oxygen is to purchase an oximeter. It is a small devise that clips on your finger and tells you how blood oxygen saturation there is. It might make you feel better mentally. Other than that, you might want to get on some mitochondrial supplements starting with co-q 10 (ubiquinol if you are over 40) pqq, there are others. You can do a search. Different doctors make different recommendations.
Hi L thanks for replying . Yea I don’t know I’m glad it corrected itself. So my oxygen always says 100 on the pulse thing. How long was it before you started to feel better. I also always feel like I’m literally dying , tired weak sick shaky crappy crappy.
a year and a half was the beginning of feeling better
Hi L I’m to lazy to read all of your comments / posts. To fatigued. You mention somewhere something about body weakness? I have loss of feeling in my limbs . Weak and feels like paralysis ? Also have some unusual brain fog mood issues. I feel tri polar . Mainly anxious tired doom gloom . Aside from gluthione ivs , what other ivs did you get ? Peroxide ? Someone told me to try stem cells ? Anyone on her try and can vouch for stem cells ?
“Mark.” Another TROLL/Stalker.
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A great story of a recovery! Good luck!!!
Hi Jamieson,
I’m also following the Wahles Palio diet. Did you read her book? Curious if you are doing the Wahles Palio or Palio plus?
Thanks,
Paul
Hi I’m a young guy and I see some people on here are inquiring about body weakness. I used to work out and have a lot of muscle mass. My biggest problem is that I am so weak I can’t even shower . I sit to bathe . My body head to toe is weak and shaky and I am worried I will drop dead . Anyone have any success with this ?
Hey read yo above everyone had it . I have it too.
Taylor, I am 4 years out and had severe weakness. My husband had to care for me. Go to floxie hope and follow the suggested diet. Also taking Coq10 helped a lot. And frankly, it just takes time. I had to go down the stairs on my butt one step at a time. Get a cane and a handicap parking sticker for your car. You can ask for one from your doctor. They are temporary but very helpful. You will get stronger.
How long did it take to get stronger ?
After the first 4 months things started to really improve. At 4 years I can ride a bike, hike a few miles. But I am not like I was before floxing. But I am also 53. I think age does affect healing ability. I can’t run or do high impact exercise.
Did all of your brain stuff leave ? Cognitive blurring days etc . Ok so sounds like your not still weak that’s good. I’m 29
Brain stuff was the least of my problems. I forced myself to play boardgames and watch movies with subtitles. That really helped. Warm water tai chi was one of the most helpful things I did. I am basically left with dry eyes, lower stamina and damaged legs. That covers it.
Any please describe the weakness because what I have is behind horrifying. Even laying in bed I have head to toe weaknesses. I have t been able to get up and shower for 3 weeks due to the weakness. It’s like life or energy left my body and all my limbs are super heavy. Worst feeling ever . I can’t walk or get up without feeling like cement is glued to my entire body .
Yes, that’s what I had. I forced myself to go down the stairs once a day and also get my cane and walk a short distance outside. I spent most of my time laying in bed. I played candy crush on my phone as I couldn’t read and watched anime with subtitles as an escape. I made myself shower. It was very hard. But very slowly I improved.
Amy how many months does this weakness last ? You couldn’t read ? Brain fog? Can you read now?
Taylor I had weakness for years but it slowly got better. 4 months out I was driving and could run small errands. I can read just fine now and hold two jobs. Unfortunately this takes time. You are younger and will likely recover faster. Please use the dietary advice on floxie hope. It is helpful. Reach out to friends and family and ask for help. Good luck.
Amy thanks for being positive. Read so many negative comments from people. Quite aggravating. I just started going to physical therapy to get stronger !!! I think I’ll get there. I’m also concerned about the cognitive stuff. It’s phenomenal you can read now and hold two jobs. Cognitively when did things improve ? I hear 24-26 months is the word out on the street ? Thanks
Taylor how are you doing now? thought I would check in.
I’m having an elevated heart rate of 120-159 last few days . It won’t come down. In addition I have severe body weakness it’s really bad. When I sleep I wake up and the room is blurry . My blood work came back normal but I did have svt in the hospital few days ago. Anyone have this?
YES I’ve had exactly that plus more, I still get blurry vision and dizziness in the morning and I can’t figure out why. My fast heart rate subsided after the first year as well as body weakness. I’m still fighting depression day after day 20 months out HOPEFULY this will some day dissipate.
Azz sounds like depression is the last of your brain stuff , if so your going to be ok. Your brain will balance the rest out. The weakness when did it start to leave ? Mine very very very bad.
It took a while of it waxing and waining for it to leave, one thing I think definatley helped was “hawthorn”. Just make sure it’s not from China, Germany is best. As for the weakness it took a while before it noticeably got better I think up to a year, even now it comes back sometimes. Do you get dizzy and depressed?
Azz hmmm no I don’t get depressed I do get dizzy tho but it’s because I’m weak. It’s more of a dizzy from being weak and tired…. here’s the shitty thing. I went to the doc today to tell him I had severe weakness and he tells me I’m a hypochondriac. I wanted to slap him. He said all my labs were normal and nothing life threatening even tho I feel awful .
OMG, reading this I just get so pissed off! I would not go back to that doctor, but if you do, I would go armed with several things. (or even if you don’t, I would drop these off to educate him.) First, I would take Dr Todd Plumbs letter that states that most tests do come back negative because the damage is mostly functional, not structural. I would also take an explanation of fluoroquinolone associated disability from the FDA site. You might want to take another of the “dear doctor” letters” especially the one from Dr de Jong, which lists some of the possible side effects. The abuse we take from doctors on top of what we have already suffered is obscene. You showed great restraint in not hitting him. (you can find dr plumb’s and dr de jong’s letters here as well as others. I would also say go armed with a copy of dr Jay Cohen’s book, but it seems to be out of print. He might enjoy the title though: “How We Can Halt the Cipro And Levaquin Catastrophe: The Worst Medication Disaster in US History” https://floxiehope.com/tag/dear-doctor-letter/
I was told the same thing just last week, and paid $85 for the pleasure. This whole experience has kinda made me despise drs, not one has even bothered looking up the side effects before telling me I’m getting older I’m (34), anxious, ect. They’ve just offered me anti depressants which I vehemently reject. I’m glad you don’t have depression it’s the WORST and saps all positive thinking as well.
This is why I avoid allopaths like the plague now, unless they are integrative or I just have no choice. I was disbelieved, corrected, shamed, criticized by almost a dozen. The next doctor I saw was an integrative cardiologist (you better believe those are hard to find!.) She listened to my whole story, did not interrupt, took notes, and just shook her head. She believed it all, and again I had over 30 side effects, head to toe.
It will pass I’m dealing with the same symptoms. Just think of it as a bad season . It is horrifying but shall pass.
Azz the depression will leave . I’ve gone through birth twice . That leaves . It just takes awhile for your brains chemistry to balance back out. Has it gotten at least a little better?
Thanks Kirpeet, It’s kind of up and down though never even near as happy as I used to be, I also noticed it correlates with vision problems. So do you know what kind of symptoms are less likely to heal? I’d like to think everything can improve I sure have physically.
Azz I heard and this is just what I heard …… all the brain stuff leaves , as does the weakness, breathing , weight loss , food intolerances. The rest I’m not sure to be honest I hear mixed things. And I’m talking about tendon joint damage and tinnitus . The vision I’m not sure but why don’t you get glasses or wear contacts ?!
The blurry vision seems to stem more from something neurological then my actual eyes, I think your right about the tinnitus it seems to stick around for most I know mine has. Personally I would be greatful just for the depression to pass and enjoy life again so I’m glad a lot have overcome it. How are you improving?
Better actually . I read on another site you were on testosterone treatment even before being floxed ? I think that may be a huge indicator as to why your still feeling the depression . Why were you in that if I may ask? Men with low testosterone usually suffer from depression OR the testosterone treatment causes depression. You may have co factors as to why the depression hit you hard floxed. But no need to fret you’ll still get better . Hang in there .!
Hi can someone call I’m losing my wife. I’m scaredd she will pass away . She’s 12 months out from levaquin four pills. She’s in the hospital right now fighting for her life. She never got better instead sicker . Can someone please call and comfort or advice. Doctors all acknowledge her vitals failing but nothing to be done. We have two kids together . I can’t lose her to this poison . Has anyone died this far out from being severely sick ? 310-883-3353
I’m so sorry to hear what’s happening, if I was you I would insist on your wife getting antioxidant IVs such glutathione, it may just be what she needs.
As long as safety is assured ofcourse sometimes I’ve heard it can make things worse, first do no harm. Just a suggestion.
Hi I’m so sorry . I do not think someone can die twelve months out from being floxed . Usually happens within first few weeks. Sending prayers . Stay strong .
Katrina, I left you a post earlier?? Look back through the posts. Your best bet is to go to floxie “home” and post on there as it goes out to many different floxies instead of one recovery story. You should get much more response!! I asked you how long you had been floxed?? If you are early in your floxing you can go through many challenging symptoms including heart issues. Some people here have had heart issues and they have recovered. I also mentioned to make some other things in that post. Please try not to panic. Remain calm. Most people do recover a lot if not completely. It is a very slow and challenging road to walk and you can get worse before you get better. That’s why I was wondering when you took the FQ and how long you’ve been floxed?? Please post on the home page. You should get many more that will respond to you and answer questions. You can heal and recover. Stay strong and believe in your healing.
I’m a year out I was given 4 pills of levaquin. I’m scared . I’m 26
Katrina. I’m surprised you are a year out!!?? Have you been getting worse and worse over the last 12 months or did you just get hit hard with these symptoms all of a sudden?? That’s why I’m wondering if it flox related?? Do NOT let the Docs give you steroids or NSAIDs. It can make things worse. Also certain medications can cause you to react or relapse. Are the Docs giving you any other medications? I’m so sorry you are going through this. I hope the Docs and you can figure things out. They do know this is a Levaquin reaction I hope. I’m just curious if you have gotten worse over the past 12 months or this condition just came on? Please write a post on the main home page. You should get a lot more advice from other floxies. Please stay strong and don’t give up. You are young and can fight this!
Katrina, where do you live??
I’ve gotten worse and worse as the twelve months have gone by. Some things left actually I had 35 symptoms floxed. I have 5 left that are getting worse instead of better. First off all the body pains left. If I get pain it’s like a tickle in a calf once in a blue moon. I still have severe dying I mean dying weakness , hard to breathe, nurse told me it was called dyspnea , my ears I’m sensitive to noise or my ears feel muffled , food sensitivities, severe weight loss , and brain fog it’s resoly bad the fog one year passed and I don’t remember the year but it’s also because I suffer from severe depersonalization and derealization. Do any of the symptoms I have left leave ?
Katrina. Read Kyles recovery story!!!! It is #101. He had severe dyspnea. He. Had it for 2 years bad and by year 3 he recovered!! He was also young too!! BUT he healed and recovered!! The good news is that you havf many symptoms that got better! Also as you heal symptoms can wax and wane. I also had bad brain fog, muffled ears and heart arythmia off and on in the beginning along with about 20 symptoms. I am 20 months out with about 4 lingering symptoms. Insomnia, some anxiety, morning bathroom issues and tinnitus. My ears felt like they were stuffed with Kleenex the first few months. Most of it is much much better!! Anyway read Kyles story! It is very much like your situation!!! It should give you lots of hope!!! Hr healed and recovered but it took him 2-3 years. But recovery takes time so just focus on making each day the best you can and take those baby steps even if you have to crawl. You can do this and beat this!! Don’t give up!!!! Keep the faith!!!
Omg see thank GOD the brain fog leaves!!!! I feel like I have brain damage . Did you also have depersonalization not recognizing yourself in the mirror ? How long did it take for the brain fog to fully leave. I think my dyspnea will leave if I gain some strength I’m very anemic and weak.
Katrina. Yes I had depersonalization, high anxiety, dizziness, light headed, buzzing ears, and major brain fog. I felt like a walking zombie!!! I would say about a year out most of it was a lot better but I feel even more normal a year in a half out. It will all get better for you!!! It cycles like you are on a roller coaster! Just hang on tight until the ride finally ends!! By the way….where do you live?
Dee I am being discharged now. My poor husband thought I sss dying when I came in . Can you email me or call? Your very sweet and supportive. Ok so I just hit a year would you say at 22 months your fog and depersonalization was still there? I have hope to recover I’m just scared. I’m actually taking a year off school to recover . This is a huge wake up call.
Katrina, you can email me. Try not to panic. You have made a lot of improvements and will get better. Unfortunately it takes time. But you will get there. I had to retire 6 months early from my teaching job after 38 years of teaching high school PE. I was too sick to work the first few months of being floxed. It is ok to be scared. I was scared everyday. I have calmed down tremendously as I have made big strides in my recovery. Be patient and as I said before “stay calm” and take 1 day at a time. Don’t add more stress and worry to the mix. This is a “process” to heal. Here is my email
deegilmore75@yahoo.com
Oh crap I misread your thing. You said a year out your head was better ? I’m a year out my head is shit still ….. hmmmm did you have depersonalization at 20 months still ?
Dear Jamieson, Please consider sending your story to CBS 60 Minutes. 60m@cbs.news.com OUR STORIES NEED TO BE HEARD, Dan
Hello everyone my name is Sadie roughly 2 weeks ago I took Cipro for a uti worse decision ever obviously in total I took six 500mg. The main thing I noticed was muscle and joint pain and headaches. I stopped taking the Cipro after day 3 when I developed sharp pains in my stomach I was worried about my kidneys and liver. It’s been 8 days now since I stopped taking it and I have mild muscle and joint pain nothing I would describe as severe my biggest worry is my eyes as I have floaters small ones mainly notice them when I’m driving with shades on or looking out the window because of the sunlight. I have a little bit of blurry vision as I found myself crying because with my left eye I couldn’t make out the numbers on the cable box I’m terrified of going blind. Luckily for me I immediately started taking magnesium two days after stopping. I’ve already changed my diet mainly eating organic and gluten free. My question is what can I do to limit my eye damage and I’m a single mom I have to be able to see. I’m trying not to feel down as this site as truly made me feel hopeful. Thank you in advance for anyone who responds
Well the first thing I would do, since it has been over a year that the FDA warned that these should NOT be used for UTIs, is to slap a lawsuit on the incompetent that prescribed these for you.
The floaters are a result of the cipro’s effect on the vitreous gel. Cipro eats through connective tissue, and that include the vitreous. There isn’t a lot you can do in that regard. I took NAC (carnosine) eyedrops every day for a year, and I think they helped some. Don’t worry. You are not going blind. I had really horrific eye issues. I had so many floaters (hundreds) it was like looking through gauze for over a year. I also had the little black dot kind of floaters too and they would appear to cover entire walls and floors when I looked at the. I had EXTREME light sensitivity to where it was painful to go outside. I would have to wear sunglasses, a hat AND hold something in front of my face, like a purse. I also couldn’t see more than a few fee ahead for a couple months. The most bizarre effect was that my brain wasn’t melding together what each eye saw individually. This is something that happens automatically, that one would never even think about. But I was seeing two distinct pictures from my eyes…not double vision, but two different visions. Thankfully that only lasted about a month.
I also had sensitivity to fluorescent lighting. That diminished quite a bit but still have some of that.
Your post reminded me of something I experienced. I used to watch (guilty pleasure) storage wars. And in the lower corner of the TV screen they would calculate in real time how much each item they found was worth, and add them up. I had no problem seeing those numbers before the cipro. After the cipro, I couldn’t even make out the faces of the people. My vision returned to close to normal. I did lose a bit of acuity, but the huge differences in not being able to see went away.
The magnesium is good. Also (and this may sound odd) I would start on a probiotic and you eating clean is great. The gut is connected to everything in your body, and the importance of having good, healthy gut microbiome cannot be overemphasized.
Sorry about your head symptoms. Mine are not quite like that. I can’t tell left from right. Meaning I have severe brain and neuro fog. Can’t think straight. One aspect is also that I don’t remember anything. 0 memory. The world feels fake as well. Derealization. I have other symptoms as well but my brain scares me the most . I have severe severe body weakness. Can’t stand or walk from head to toe body weakness. And I have terrible food sensitivities . Tried to explain this to allergist who told me this can’t happen from antibiotics. I lost 25 pounds. The food sensitivities when happening will make my entire body feel even weaker . Anyone have any success with this . Stumped . Do not understand where food sensitivities come from. Gut?
OMG I am so sick of doctors saying this can’t happen. They are beyond ignorant. I lost 1/4 of my body weight in 2 weeks, and was so weak I needed assistance to walk. These just ravage the good gut microbiome. I did not end up with food sensitivities but I am overly sensitive now to light and smells.
One thing that can explain it is that some end up with mast cell activation syndrome, which makes your body produce histamine to things that are (should be) innocuous. I also have read that leaky gut can cause food sensitivities, so I would work on getting that in shape..probiotics, no GMO or gluten. Organic when possible. I would also try to find an integrative MD or ND. Most allopaths are clueless.
Yes he made me feel crazy . I was very distraught . As for brain. Does that fully resolve. Oh my the weakness sounds a clone of what I am experiencing . Did that fully resolve? When I explained what had happened to me his reply was ….. “have you see the movie the excorcist?” The girl gets possessed by demons when turns into a medical mystery” He compared my illness to a movie ! I was disgusted
I had a neurologist put in his notes that I was hysterical and delusional. It is unconscionable. First we are physically and mentally devastated and then we are thrown under the bus by doctors.
The weakness eventually did subside but I was very damaged. I was struggling to breath and had over 30 side effects. It took me a long time…almost a year but I still had other issues going on. As for the brain stuff, yes mine resolved 100%.
Neurological symptoms are my worst symptoms, I think generally far worse then most. 20 months out I’m still suffering from severe depression, dizziness ect. When I think I’ve made improvement something throws me back to square one again. I’m not sure if the brain heals I sure prey to god it does.
I am in tears . Thrown under the bus is a good term for it. I am a math teacher and I can’t tell left from right. What can I do to aide this horrifying weakness and fatigue? I do not know why it occurs so I feel lost in this crap storm trying to navigate .
Well I think a lot of that has to do with mitochondrial damage. They are the energy in all your cells. So I would take a good quality coq10. ( ubiquinol form if you are over 40). There are other mito supplements including r alpha lipid ….acid; not home right now do don’t have my list but do a search.
I am 48. Ok I will check thank you . So sounds like the weakness left as well as brain. Splendid . I need to find someone who has food sensitivities to figure out how to rid of that . Thank you L. What physician treated you and would you say he helped? I’m in West Virginia.
I’m in California. An ND saved my life. I have had over 100 IVs. High dose C, Myers, phosphatidylcholine….
L I’m starting to think I give to much blood at blood tests maybe . Two things …… The first is I’m severely underweight. When did you start to put on weight . Not sure if you lost any as everyone is different. Second the weakness I have is absolutely horrifying . It keeps me in bed all day. Head to toe body weakness. I can’t sleep either due to how uncomfortable it is. Makes me feel like I’ll die in my sleep from being so weak . I picked up pqq coq10. That horrid weakness began to leave when for you?
I had TONS of blood tests, and lots of blood withdrawn (including 20 vials at each of 3 settings to get blood stem cells) I wouldn’t worry about that. As for the loss of weight, yes, I ost 1/4 of my body weight within two weeks. It took me most of the first year to put it back on. Since was having so much trouble breathing, chewing was difficult so I lived on smoothies and in addition to fruit and veg in them I added almond butter and two tablespoons of coconut oil on the advice of my ND. As long as your gut is not properly healed it makes it difficult. You will get there, don’t worry. As for the weakness, I have a hard time remembering back now, but I am sure it was at least 8 months. And even then I was not back to feeing normal, energy wise. That took more like a couple years. I am 4 years out and even now I am not what I was pre-flox, but certainly about 90% energy wise from where I was at my worst.
I’m still suffering from the physical symptoms but it’s a drastic improvement from 20 months ago, to begin with my weakness was so bad I could hardly walk. That’s why I was fired from my job at the time. But it was also the first symptom to get better, although it comes and goes in waves. So hang in there it will go but it took at least 5 months in my case.
Well I think I have the flu hence the worsening of my symptoms. My husband is sick too. We both have severe weakness and I already had that really bad from floxing , loss of apetite , running to the bathroom , and I feel like I’m burning up swapping between hott and cold flashes . Floxing ain’t kill me but this can’t be good . Flu plus flox equals crap .
Did anyone ever check their adh level floxed?
Mine is non existent I had it checked . Which explains why I’m dehydrated all the time. Which prob explains why I’m lethargic. Doc also found keytones in urine. And my chloride was high . Super Breathless this week when I speak and immobile from weakness. When I speak I get soooooo tired . Anyone have any luck with this?
Your story resonated with me. I was Floxed October 2013- I had the headache for two weeks, along with the blurred vision (no floaters), just a biofilm that would become inflammed and climb halfway over my eye (not a Cateract) and would block my vision. Of course. Had many other symptoms, but I won’t bore you with the endless list. I am Canadian as well. My husband and I moved from Kitchener to Timmins (of all places) to start over as we lost our house due to our health. Thank-you for sharing your story. I have found some healing as well- three years out (summer of 2016) I thought I was mostly healed. Alas, I have been in a relapse now for several months end of 2018-current. So I understand the hope, loss of hope, scenario that you wrote about.
Shelly. Do you know what caused your relapse?? Taking a new medication, starting exercise or stress etc?? Just curious. I’m 85% recovered but I always worry about relapses. Is your relapse as bad as your original floxing? I hope you find healing and recovery again soon!
How long did you have the brain fog? Did you have depersonalization too?
I live in Oregon . You? Do you have an email ? How long did the depersonalization take to leave? Are the days still blurring ? My shit doesn’t even cycle depersonalization is always there so is the fog 😕
Katrina. My brain fog, light headed, dizzy stuff didn’t really cycle either. It just started to get less and less as time went on. My first year was pretty bad. As I started into year 2 things slowly improved quite a bit. A lot of floxies take 2/3 years to recover. You are young and only took 4 pills so hopefully that will help you recover sooner!!! I live in California. I took 7 pills of cipro in June of 2017. AND I am older….62 years young. If I can mostly recover I’m sure you will!! I take a lot of supplements and also homeopathic remedies. Hard to say what has helped and what hasn’t as I take a lot of stuff???? Are you out of the hospital now??
Wahl’s is Firstly, Pseudoscience Big pHARMa Backed/Western “medicine”/”educated.”
I Don’t trust her.
You are WAY off on this. She cured herself, when western medicine failed her, by changing her DIET. Watch her TED talk.
Totally trying this diet . Just bought the book. Anyone experience depersonalization or derealization . Not many floxies seem to have gotten it or know what it is. Anyone have brain fog? Many of the stories don’t emphasize brain pain ….. anyone that had it and had it resolve please advice . How long it took!? What worked?! Etc Five months out .
I had multiple psychiatric issues and I was such a mess in that regard (as well as head to toe damage) that I am amazed I am still here today. Suicidal, paranoid, and anxiety so bad that I was in the “fight or flight” mode all day every day. I would say that the really “out of it” symptoms like the paranoia lasted about 6 months. The suicidal ideation a bit longer (although at some points I do not know how much of the suicidal thoughts were actual side effects or the result of gasping for breath, and all the other horrific experiences I was having.) The one that took the longest to go away was the extreme anxiety. That last at least a year. I know because I didn’t drive for the first year, and I remember that when I finally did, if someone so much as honked at me I would have to pull off the road. I have relayed a story here before about being in Trader Joe’s and having a woman’s cart tap mine. It was literally a mild tap. I stood frozen in fear like a deer in the headlights. I couldn’t speak, I couldn’t move. She apologized. I couldn’t talk. Finally after a minute or so I was able to move again.
I had so many nutrient IVs and supplements that I don’t know what if anything helped. I also was reduced the first year to living on smoothies because of the breathing issues. I think time was the biggest factor in this regard but who knows. I think you starting that diet can only help.
Ok I think going out to CA would be quite expensive. I’ll try to find someone out here to compute the same formula . Thank you ! What percent are you recovered? All I have is brain and weakness food sensitivities. If those left I’d be ok. Occasionally a muscle will twitch here and there. But I’m also hitting menapause soon. I can’t tell if the muscle twitches is hormonal shifts .
Hard to say. I thought I was about 95% but now have been dealing with some “mystery” complication for a year now that I suspect may be a result of the cipro. Also, I have several things that are likely permanent, like vision damage; phantom smells; tinnitus; light and scent sensitivity…so I will never be 100%.
Well sounds like you have little things that may just be of nuisance at this point but not disabling . By the way Azz your the only one I see 20 months out and still unwell. Keep fighting. I’ve spoke to many now and the brain does/will heal ,
well, no. macular degeneration is not just a nuisance. There is no cure. The tinnitus at times is so loud I feel like I’ll lose my mind. the phantom smells are disgusting and can go on for days, so really effects quality of life. I also still have some breathing issues. so, no I would not categorize any of it as “just a nuisance.”
You’re right, and it scares me greatly that I’m stuck like this forever over just 3 pills of Cipro. I really hope there’s recovery but like you said no one you know has suffered neurological issues for this long.
A bit concerned with this guy Azz up above. L seems like you have better insight than I do. Does everyone recover from the weird brain stuff? I’m trying to be comforting to him but I really do not know. …… Also does the weakness fully resolve for people? I’m talking crawl to the couch can’t hold a glass of water weakness kind of thing . Thank L well I read your remaining symptoms. Sorry they’re so bad still . Floxing is the devil .
I believe they do. I was out of my mind. Suicidal for most of the first year. So paranoid I actually contacted police at one point because I thought someone was trying to kill me. My anxiety was fight or flight for most of the first year. Mentally, I am back 100%. (Although some friends might not agree with that.) I was in such a dark place I could do nothing but sit and cry. I think I also cried every day (sometimes several times a day) for the entire first year. Of course, I had head to toe physical issues as well, which didn’t help, and my breathing was so compromised that I felt like I was being suffocated for months. It’s funny, I remember one day, a little over year out, and I was sitting at the naturopath’s getting an IV. I was talking with another patient also getting an IV and I said something funny and she laughed and then I laughed, and I thought “Damn! I’m back!” For someone for whom humor is such a big part of who I am, it was like welcoming back an old friend who I hadn’t seen for a long time.
As for weakness, I would say I am 95% back…and in the early stages it was a struggle just to shuffle a few feet from my bed to the bathroom. I would have to hold on to the edge of the bed, then a dresser, just to get there. If I had an appointment, like to get an IV, whoever took me would have to help me out to the car. Mostly what holds me back now is again related to respiratory issues.
L you have so much knowledge. Thanks for comforting Azz. And well myself. Yes I have that weakness. Terrifying . Azz if your reading this don’t worry . You’ll be ok. L as for breathing issues I don’t think I have any. Although I do feel at times like my chest is heavy and I have shallow breathing . However I think that may be related to anemia ? Body being weak maybe blood isn’t getting around as efficiently . Not sure. Your breathing issues are hopefully 90 percent t resolved ?
I’m from Australia, unfortunately they hand out that poison here too. Thanks so much for your support, I really should be more positive but as you probably know after so long it’s not easy. I’m relatively young 34, so if others have healed I would think I can as well.
L I’m really sick. I think I’m on my death bed but I can’t tell. I’m so weak , breathing feels heavy , can no longer eat whatever appetite I have left is gone , I lost more weight this week. 84 pounds . The doc are jerks. They tell me sarcastically that my labs look better than theirs . Assholes I’m furious . Can floxing kill you a year out. The only thing that looked weird on my labs was my kidney was at 89 percent. And my heart is or has been tachy. They floxdd me and now they’re throwing me under the bus meanwhile I lay in bed struggling for every breath because my chest feels so heavy . Just tell me I’m not dying .
Katrina, you are not dying. If I had to guess I would say you have a lot of mitochondrial damage. Again, I would suggest coq10, pqq, R alpha lipoic acid to start, and I URGE you to find an integrative MD or ND, especially one that does IVs. You may actually find someone who has treated floxies before. IF not, see if you can find one that has treated Lyme. We share many side effects as well as treatments.
Jamieson, congrats on your recovery!! It took you awhile but am so happy to hear that you carry on with anything you want to do in life!!! That’s huge!!! I am 17 months out and have improved a lot but still dealing with lingering issues. I see that awhile back you were still dealing with dizziness and tinnitus. I am still dealing with that also and wondering if that is “still” getting better for you? I still have some insomnia and guy issues but SLOWLY showing signs of improvement. I get numb toes especially when sleeping and waking up. Did you experience any pheriphial neuropathy? If so, did it go away? I hope you are living a full life again and also making more progress. Thanks for your story and comments to help us still struggling. It is a way to give back that is so appreciated!!