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 Jamieson. So happy to hear you are better. Thank you for sharing! I am two and a half years out from Cipro damage. Still can’t exercise like I used to. Tendon damage. But I hold out hope as it does get better at a snail’s pace. Peace.
Thank you — I needed to hear this.
Your reflections resonate with me. It truly is the mitochondria where almost all of the symptoms emanate from. But, it is also in the tenocytes and collagen as well Rolling over in bed 2 weeks ago, I tore ligaments that hold my carpal bones together, much like when tendons tore and ligaments simultaneously detached 3 years ago, causing my left leg to break in 3 places. We move on, trying to not focus on the symptoms as they can burn a highway of pain hell directly to the brain if we do. Just left seeing my PCP who still cannot believe all of this, including vision loss, is related to FQs. All he admits to is that it is not normal. Walking onwards as usual, albeit with mindfulness, as therein lies my healing.
Dear Jamieson …your story has given me a glimmer of hope. My cipro journey began 2/2/2017…12 hours after taking the first dosage of cipro. Doctors will not admit cipro harmed me. The pain is excruciating, but I am able to deal with it now better than day 1, though some days it kicks me hard and no amount of meditation or breathing exercises helps. I am a shell of my former self in body movement ability. I am a bit overweight….and that part is not changing. I sort of laugh at that as I realize that those FAT CELLS are holding on for dear life!!!! It is such a shame that all info I have gathered has been from my own research….down to which blood test I wAnted done. Just getting a doctor to agree I needed blood work was a joke. I have little energy, so I choose to use it in research (not my field) to possibly discover something to help all floxed benefit. I am my own health Advocate…no longer buying into what a doctor tells me as I see they are basically prostitute to the pimp drug manufactures. I am also pursing better ways to make our voices heard. I’m exhausted all the time, but I feel I must do this. Thank you for your inspirational story. God bless us all
Very good write-up and advice. Felt like I was reading my own account of events. The symptoms and point of impact are pretty much the same for everybody on this website. That’s neither a coincidence nor a rare event.
I agree with you 100% about the benefits of green tea. It really helps with this. I also drink Gold Cup Chai which contains Turmeric. Highly recommend it for the inflammation, which as you know, can be brutal at times.
Appreciate the advice on the smoothie. If you don’t mind me asking, how much of each do you place into your smoothie?
I’m also in Toronto. I’ve seen others on here as well.
Lukasz, for the smoothie I never really measured specific amounts, but rather played with the formula until I found what I felt right with. It varies and I’ve added and subtracted things, but the main point stays the same; to get the nutrients, vitamins, and compounds that the body needs from food as a starting point, each and every day. It’s not a miracle cure, but it certainly has been beneficial.
Thanks, I’ll give it a go.
Hi Jamieson,
I’m curious to know if you stopped taking the prescription after four days, or took it for the whole two weeks.
Hi Kerry, I managed to swallow one full week of the prescription from hell. I can’t imagine what the full two weeks would have done to me…
“prescription from hell” – very well put
Thank you for sharing your inspiring story, Jamieson. I have also been floxed 2 months ago. Really terrifying symptoms first, but fortunately some of them subsided and I hope for the best in the future.
Eye floaters have been bugging me a lot too. I did find some useful information on this website and did try the beets which kinda helped. I am very curious about the castor oil or flax seed oil. Many have reported improvements using them as eye drops. Will have a try soon.
Here is the link: https://www.earthclinic.com/cures/eye-floaters.html
Hi what is Newly Floxed ..Is it available to all?
I live in UK but could call the number
Lots of similarities with my experience Jamieson, and I am at about 2 1/2 years out. I will say though that supplements and especially IV therapy helped me tremendously. I am surprised you are ok with green tea. I had to give that up not only because of the caffeine but because it is high in fluoride. When I was able to have some caffeine again I did add in a cup of coffee every morning (starting a few months ago,) and was also happy to add back in a glass of wine some nights! I too have had a lot of eye issues. THe floaters at some points were so bad it was like looking through gauze and I had so many of those little black specks (another kind of floater) that it was like looking at an ant hill. I also suffered blurred vision, a terrifying “light show” and now have been told I have early AMD. Really pisses me off because I have always taken such good care of my eyes. I also have extreme light sensitivity and was worried I would never be able to act again. However, I stood under some stage lights a week ago and it was ok. Yea! Apparently it is just sunlight and fluorescent light that is disturbing. I will tell you one thing that helped some with the floaters were NAC drops. I used them four times a day for a year, so a huge hassle (about $25/month) but it did cut down on the floaters.
My diet is like Wahls “light” (There is no way I could even store the amounts of veges she eats every day) and I have a smoothie almost every day that is practically identical to yours! I wish us both continued improvement….
It’s amazing how similar our stories can be. I’m sorry to hear about the AMD; macular degeneration scares the hell out of me as it would literally kill my career. I didn’t tell about it in my contribution here, but I was and still am specifically affected by florescent lighting. Stepping foot into a Walmart or gymnasium is like walking into the twilight zone. I instantly become a space cadet.
Congrats on your recover Jamieson! Was wondering if you have had any leg tightness and swollen ankles, am a year and a half in now after taking cipro. Many symptoms have resolved and slowed down. The most bothering one now is the tightness in my legs I can’t stand or walk a lot.
Leg tightness, yes definitely. I felt like a sudden senior citizen. I didn’t notice much swelling, but my range of motion in my ankles became limited, and I felt -as I described it- fragile.
“sudden senior citizen” – again, perfectly described
Hi L I know you mentioned on some other site you woke up gasping for air . I have this really bad . I literally feel like I stop breathing when I sleep and wake up gasping. How do I fix this? Did it fully go away for you ? Is it sleep apnea ? I can’t figure out what it is.
well for me, Janet it was a combination of things. First, I was struggling for each breath. I have had asthma in the past but it was nothing like that. It was as if I would start to take a breath, and then a door would slam shut, and just stop it. So each breath was very “short.” It was really terrifying, like I was being suffocated every moment of the day. At first I assumed it was some kind of nerve damage to the autonomic nervous system, since I had other nerve damage…and it may have been; however, a drug researcher said he suspected it was mitochondrial damage to the heart muscle. Either way, it was horrible. I didn’t think I would make it ten minutes and I was like that for several months.
I would NEVER suggest anyone take sleeping pills, but I had terrible insomnia from the cipro and then the breathing issue on top of it. So I did start taking sleeping pills. Even with the pills I was lucky to get 1 hour, before I would awake, gasping for air. Partly it was the breathing issue, but in addition to that I had a sense of being strangle. This I also believe was nerve damage. I say “strangled” as opposed to “choking” because it felt like it was on the outside of the neck, pushing in. So between the two issues, when I startled awake, I am not sure which of them actually woke me up, of if it was the combination of the two.
I had a LOT of IVs…I was getting them 3 times a week early on. And once I got up to about 6 hours sleep with the pills, I began weaning myself off. I was only on the pills for a few months, so that is when the waking from breathing issues must have started to subside. I still wasn’t breathing normally for at least the first year…but it was slowly more and more normal. As for the choking sensation, that slowly lessened too. That may have even mostly gone away sooner, although I would have mild recurrences of it, but nothing alarming.
Since I don’t know for sure what caused it, using the researcher’s suggestion, I would do everything you can to build up your mitochondria…coq10 (or ubiquinol if over 40) and other mitochondrial supplements like l-carnitine, d-ribose, r-alpha lipoic acid, the b vitamins, which also are good for nerve function. (There are others.)
I know it is so scary, but it will go away. If any of my description above sounds like it might be similar to yours, I would also suggest finding an ND or integrative MD who does IVs. The one that I think may have helped me the most in that regard was phosphatydilcholine.
You are INCREDIBLE L. Yes those same exact symptoms are what I have ! Can you send me where your MD is or your homeopath ? I’m in CA! Also can you somewhere send the kind of IVs you got ? Your a gem ! Thank you . Here is my number Incase you want to call and make the suggestions 310-432-3381 or I’ll jusy check back here today to see if you can write an useful IVs . God bless !
Will call
Sorry think I posted in the wrong section. I saw you had gasping for air when you sleep i have that too . When did that leave? What helps?
Hey guys 30f here currently being kept overnight st the hospital. I had originally come in because I felt severe severe body weakness and feeling crappy. Turns out I was severely dehydrated . Er gave me two bags of an IV. I still felt weak and shitty getting up to use the bathroom then I had an SVT episode my heart went to 168 I felt like I was dying . Very scary they had to come and give me a shot or adenosine. Thought today was my last day on earth . Very fucking frightening . Anyone have these weird heart episodes , and what the hell is up with that body weaknes . Anymore weak and I feel like I’ll be paralyzed . This needs to end . Someone please tell me how to rid of this weaknes and if they had any heart issues .
Katrina. How long have you been floxed? When did you take the FQ?? Hopefully you have been ramping up your Magnesium intake as FQ severely depletes mag?? And yes it can affect your heart and make you extremely weak. Especially early in your floxing recovery! There are many things you can do to help your recovery. I gal named L usually keeps up on all the postings and I know she had some heart issues early on. Hopefully she will read this and get back to you soon. Meanwhile pump up your Magnesium intake (glycinate is better) eat real clean, no fluoride in toothpaste, water, food etc. you can start on various supplements but that can be different for everyone. If you are real early on in your floxing try to hang in there as it WILL get better but it is a slow recovery process. Be strong and have faith in your healing.
I’d say recovery depends on your severity of symptoms, most people don’t have a severe reaction and hence recover far sooner. I myself am 20 months out and still living the nightmare with mostly phychiatric symptoms, I think those like me take at least 4-5 years to recover if we do.
Hey Azz,
What is your definition of a “severe” reaction? I’m still able to walk and function and exercise, but the anxiety, GI issues and neuropathy kind of hit me tough. I can still work and take care of my two little girls.
I only took one Levofloxacin 500 6.5 weeks ago.
I wouldn’t worry that doesn’t sound severe in the slightest, severe is when you literally can’t get out of bed and your experiencing psychosis
I’m just wondering when the random anxiety episodes and neuropathy will subside. I only took one dose, but I definitely feel the neuropathy. Does that subside for most folks?
Is it peripheral neuropathy? If so it doesn’t take long to heal for me it was my shortest symptom, the neurological symptoms are ongoing even after 2 years but I’m a severe case
It’s different for everyone. Some of mine left, but 4 1/2 years later all my toes are still numb. Again, there is a warning that says there may be permanent nerve damage. No one can say for sure if it will go or not. (I also believe the tinnitus I have is from nerve damage.)
That may be the case but peripheral nerves are well known to have the ability to heal, so I’m confused as to how it could become permanent.
Azz – peripheral nerve damage may be permanent – the hospital advised that the nerve damage may be permanent. My bout with the quinolones was spring 2013, five years ago. Toes still numb. Pain in legs, painful tingling, skin like a bit snake skin, dry and discoloured; not as bad as it was ! Tinnitus.
“peripheral neuropathy is such a difficult disorder to treat” This is from Dr Perlmutter, a well known neurologist and author of the books on the brain gut connection. https://www.drperlmutter.com/fluoroquinolones-peripheral-neuropathy/
I suspect maybe part of the reason why my feet are still numb (but my fingers no longer are) is that they are the furthest from the brain, where the signals start. Just a hunch.
Can you have a mild reaction that includes gluten or other food sensitivities?
Hi L I have that breathing thing you were describing really horrendous . I also at times feel like my chest is to heavy for me to breathe . When I speak I get violently winded . In addition I lost a crazy amount of weight . I’m 13 months out . The weight loss is contributing to body weakness, the shakes , and uncomfortable loss of limb movement . Feels like I have cement limbs. Please guide or reassure on these symptoms. Do they leave ? What helps ?
Those particular issues starting leaving for me near one and a half years out. What helped me most were nutrient IVs. High fuse c, phosphatidylcholine and glutathione.
Cool. What should I do for weight loss? When did the weight come back on for you ?
I really have a hard time recalling. I lived on smoothies loaded with fruits, almond butter, coconut oil (two tablespoons) for a year….because I couldn’t chew food and swallow. It was either that or struggle to breathe.
Did you or anyone have the weakness where you swore you were going to die? It feels like cement is tied to tie entire body head to toe?
Yeah I think I responded to this before. I felt like I was near death for a good chunk of the first year. Weakness , breathing issues, thirty some side effects. Felt 100 times worse than when I had double pneumonia. And again it just took alot of iIVs, supplements mentioned here by everyone and time.
Not sure what you were looking at but that wasn’t me. If you read a lot of these posts you will see that many experienced what you are going through, and the amount of time to recover varies from person to person.
Thankyou Jamieson for giving us your story. You will help many many people by doing this. You have given the gift of hope as well as practical advice. I wish you continued healing and all others also.
You say you are 99 percent normal but still describe a lot of symptoms? Can you clarify? Also when did things start to turn around for you? Was it gradual or all of a sudden?
To me, 99% means that I’ve recovered enough that this no longer hold me back from doing anything in my life. I no longer have to make provisions to accommodate for this. I no longer have to turn down work because of fatigue. I can say yes to any invitations. I can create like I did before. I can travel without needing to rest. I no longer identify as an “ill person”. This no longer stands in my way of doing anything.
The only reason that it’s 99% though, and not 100%, is because there are some residual issues. Annoyances at this point. Eye floaters. mild dizziness. Slight ringing in my ear. I can live with these annoyances, but since they still exist, I can’t tell everyone that I’m 100% recovered. All of my recovery was gradual and cyclic.
A nice description of how you are almost fully recovered. Thanks.
Hi Jamieson can you please tell me how long the depersonalization and the realization lasted ? I am ten months out from being floxed and have this symptom the worst ! Ten months passed all in a blur . I gave birth into the second month of my floxing and I’m raising a child in this shitty blur . I’m scared . I don’t recognize myself In the mirror and I can’t connecg with anyone including the baby . How long did the DP DR last and when would you say they STARTED to fade ?
I just heard about being floxed about 6 months ago. I started studying and realized that is exactly what I was going through. I am four years out from Levaquin and about a year out from Cipro. My MD did not tell me it was in the same family of antibiotics. Last night I read about fluoroguinolenes and knew I found my answer for the horror I have been walking (limping) through the last four years. I have had 23 sets of steroid injections in my spine (bulging discs in lower back), broke my upper back, suffer from intense neuropathy in my legs. I have floaters in my eyes and see a specialist. Every joint in my body aches everyday. The worst part is I have a daughter with Down Syndrome to take care of and sometimes can’t get out of bed.
Thanks for writing out your story and what you did to treat it. My husband doesn’t believe me. Even though next week i am going to have both knees x rayed for a fall. I am so glad I found this group.
Kathy
So sorry Kathleen. First, you MUST avoid all steroids (and NSAIDS). They exacerbate flq toxicity. Please seek out options such as prolozone injections and prolotherapy which help the tissues regenerate and heal naturally. I had, among my 30 or so side effects, torn meniscus. I have since had prolozone injections in both knees. (It takes about 6 months to see improvement.) I am about 9 months from the injections and so far so good!
I had horrible floaters. So bad at times that I would see dozens of black “dots” and the larger floaters were so big and numerous it was like trying to look through gauze. I still have some but am much better. I did NAC drops four times a day for a year.
Can someone please advice. I’m in the hospital my hemoglobin is 10.4 and I have dyspnea . My oxygen dropped to 83 I feel sooooo weak and scared for my life. Did anyone have this ?
Katrina, also do not let the Doc give you any steroids or NSAIDs! That can make things worse. Try to not take anymore medications if possible as you are toxic from the FQ right now! No fluoride either!! For starters. There are many other things to help in your recovery but just try to get through this and get home. Read the floxie hope recovery stories. There are many many suggestions but everyone is different in their response to supplements and treatments. A good functional Doc or ND can advise you most of the time!
Gotcha sorry I’m a little brain fogged to so I had to go back and read some of your posts. Another odd symptom I have is my insides feel like they will fall out ? Ummmm ???? Anyone else have this ? Super odd. It’s like my stomach has no sort of strength can’t explain.
DONT TAKE ANYMORE STEROIDS! I’m sure that could be why your problem is ongoing. I too made the huge mistake of taking iboneurofen due to constant headaches and only later found out this is a terrible contradiction. I wish my doc or at least the pharmacist told me this vital information.
You’ll be fine . Doesn’t seem like you have the crazy neuro stuff . The brain has neuroplasticity meaning it has the capability to regenerate . In time you’ll recover . 1. Brain 2. Body weakness 3. Weight loss seem to be the top 3 things people for sure recover from . The rest I’m not to sure . What part of the world are you from Azz?
Hey Kirpeet, did you have time to talk? Thanks.
Thank you for your story. I am also a photographer and I am having a hard time even picking up my camera. I wear hand braces when shooting. But mostly I feel too sick to even try. I was floxed four months ago with two levaquin pills.
I’m so glad you are 99% better. I look forward to the day I can say that.
Thanks Jamieson for sharing. I agree with you in regard to relying on food for nutrients. For the first 2 years after being floxed I stayed on the SAD and took more than 40 different supplements a day. I didn’t start to see improvement until I went gluten free, NO oil/sugar low fat 100% plant based with daily green smoothies.
Hi Jamieson, did you eat organic meat only? I see many floxies also recover from eating organic.
Hi Jamieson,
Do you need to wear any corrective lenses after this experience? My vision issues mirror yours exactly. I had to get prism glasses for the double vision issues two months ago. I have a whole host of other vision-related difficulties. I had LASIK prior to getting floxed so I am really upset that my 20/20 vision is gone. I have a lot of eye floaters and visual “noise” in my vision a year post-Cipro. I had it all though- tendon pain, dry eyes, light sensitivity, these are slowly improving, but not great yet. I have 4th cranial nerve palsy from this and my right eye does not work right. I can see out of it, but my eyes are misaligned and they do not work with my brain right now. The prism glasses help and are what allow me to continue to function. When you get a minute, if you could report back re: your vision-related experiences, that would be helpful to me. Thanks!
How can I talk to Lisa?
Tap on ‘Contact’ at the top of the page and you can e mail her
I’m convinced that like you the fact I took NSAIDs at the same time I was being poisoned with cipro made me alot worse, I have all of your symptoms plus hallucinations and pain all over especially in the legs. After 5 months I’m still the same but I can see I may heal but it will probably take 3 years as well. The only reason I took it was for a sinus infection and of course my GP denies any responsibility with a stupid look on his face. What a mistake but I do have hope and if others can heal I can too.
Do you have the days blurring still at 20 months? Can you recognize yourself at 20 months?
I got a lot better at 10 months out, but for some reason I was thrown back into the nightmare with vengeance now 20 months out I’m worse then ever.
Azz I really have not heard of anyone having the brain issues that long. What is your email ? What are your exact brain symptoms? Did you have depression prior to being floxed ? On any benzodiazepines before or after floxing? So many factors can play into this …..
My neurological symptoms are extensive, nightmares, dizziness, vertigo, severe depression, bad memory ect. I could put up with them all except for depression. I believe its severe in my case due to taking NSAIDS at the same time (there’s studies to show it makes neurological symptoms 5 times worse).I originally took the antibiotic for chronic sinusitis. I was never depressed before, infact when I look back I was magically happy people often told me that as well. I’d like to think my brain will fully heal but I can’t see it happening, at least I’m hoping someday not to suffer from this horrible depression. But you’re right almost everyone I’ve read about has improved I don’t know why I can’t.
Something you might try is turmeric (with 95% curcuminoids) studies have shown they to be more effective than antidepressants. They are good for inflammation, and many of us have high inflammation from the flqs, so no matter what it will be useful to you. But again, get a reputable product and it must say it contains 95% curcumoids. Here is an article that explains it a little more. http://www.natural-remedies-review.com/turmeric-dosage.html
I used to take curcumin but read an article about herbs from India having a high heavy metal content, and from what I’ve seen all curcumin comes from India so I’m at a loss what to do.
Name all of your brain symptoms. Be specific please . Thank you .
Azz hmmm interesting. Do the days blur for you and can you recognize yourself in the mirror? If yes you’ll recover . If no ….. also are you on any benzodiazepines? Anti depressants or neduceuins for this ?
No I’m loath to take any synthetic chemicals again if I can avoid it. I find it hard to concentrate on things is that what you mean? I should note the hallucinations and paranoia got drastically better after 10 months but nothing else..hopefully soon.
You’ll be fine. I haven’t seen one person end up with brain stuff . 0 ! Only person was this kid who had cerebral palsy and a entire host of soooooo many other things going on . If you were healthy before this you have a better chance of recovery . 20 months floxed is actually kind of “new “ everyone I spoke to said they’re brain stuff didn’t start to leave until 20 months , and some sooner . Jamieson here looks like he took 2.5 years. It will leave it just takes time.
Thanks Kirpeet, you’ve cheered me up
What health problems did you have before Cipro? How many pills did you take?
Do you still suffer from brain fog, depersonalization? Neuropathy?
Wow, that sounds so much like my own story. I would say I’m 80% recovered. Still battling fatigue and ear ringing. I am going to try your shake. 🙂
Those of you wondering how to treat symptoms of prostatitis should try bell ezee flo tea. It has helped me immensely. No need for antibiotics that did nothing to help anymore. It is truly a miracle herb.
Good and informative article. So glad you are 99%. What painkillers seemed to help you. I’m afraid to try pain meds but sometimes the tendonitis pain (leviquin induced) seems unbearable.
Shauna, look up Kratom for pain. I found it great, it’s natural and works quickly. I take it when I really need it, so I don’t become intolerant to it. Another one is CBD oil, but it didn’t work for pain for me, but did help with sleep issues.
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!!
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.
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??
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?
Dear Jamieson, Please consider sending your story to CBS 60 Minutes. 60m@cbs.news.com OUR STORIES NEED TO BE HEARD, Dan
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 ?
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 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.
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
A great story of a recovery! Good luck!!!
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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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.
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.
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 .
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…
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 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