*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
I want to tell my story of recovery that was a little different from all I read here on the site.
It all started in January 2016 with a persistent throat infection where the doctor in my city prescribed me a course of Levaquin (Levofloxacin) 750mg once daily for 5 days with prednisone for an allergy in my airway. With the second tablet started to realize I was getting anxious, depressive and could not understand what was happening, and could not sleep at night. The next day I woke up worse, anxiety and depression, fear were almost uncontrollable, so I tried the doctor who had passed me the antibiotic and told her what was happening, he told me that the antibiotic was not to blame for what I was feeling and told me to finish the course of it. Still not knowing the side effects of fluoroquinolones, I finished the course with a lot of suffering.
The days went by and I realized that I had not returned to be the same as before, although I was very lucky to have had no other side effects such as nerve problems, neuropathies and tendon problems. My nights sleep was horrible, I had lost interest in everything, was afraid to do the simplest things that I used to love and had no control of my own emotions until I looked on the fluoroquinolones and my world fell with everything I read, I thought I was doomed to live side effects for life.
In February I sought a medical psychiatrist who prescribed me an antidepressant (Escitalopram). It made my anxiety much worse and gave up using it. I started researching and found that using a benzodiazepine also could only delay my recovery then dropped out of conventional medicine and looked into gentle healing methods.
I cut alcoholic beverages, caffeine and tried to keep away from sugar. As I sought acupuncture and yoga to help me endure the side effects until gradually they were becoming less intense. Over the months I started to have good days where I could do pretty much everything that I liked to do before Levaquin, and others where the symptoms were back and I could not do anything, just trying to distract me until the day could pass and that the best days were back. During this time also I avoided any kind of allopathic medicine, especially NSAIDS and steroids. I also took several tests and they all came back normal, including vitamins and minerals. The things that helped me at that time were: exercise (I ask to carefully those who have tendon problems and nerves) breathing exercises, which help a lot in anxiety, reading, yoga, religion (spirituality) is wedded to God me It helped immensely to go through this whole situation that was by far one of the hardest I ever had in my entire life. I tried to let my body recover alone because I thought so would be the best way to get full recovery, without haste, without despair, even seeing that I had horrible days where my mind was going down hill and that it was difficult to believe any recovery.
Well now I’m almost 6 months out and I can say that I am not fully recovered, but I’m on the road today still feel anxiety and occasional fear, I still have some bad days, but I know I will get there. I can now sleep well, I am eating well, I do exercises and I am almost back to all that I liked before. I hope next year be able to return to my studies I had to stop because of problems related to the antibiotic. Stress can be terrible for people who are seeking recovery. Try to look for something to make you well, look for something that brings relief for all those months I tried many things that could help me get some relief in my symptoms, and without realizing I was recovering. I wish you all a great recovery, have calm, have faith and above all do not despair, there is no miracle cure for the problem, I think the best cure is time. Avoid taking everything you read on the internet because what may be good for one may not be for others. Any questions or concerns will be here to help them.
** 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, affect 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.
Marcela, I too was given an FLQ at the same time as a prednisone. The anxiety, depression (suicidal) was nightmarish. I also had about 30 other physical side effects so it was amplified. It is so disturbing that the majority of doctors will say “can’t be the Levaquin/Cipro/etc) without even bothering to research the side effects. Glad to hear you are on the road to recovery.
Marcela, thank you for sharing your story! It’s so good to hear of your recovery and that just giving it time and, using natural techniques, was the answer for you. It’s not appealing to many of us to treat a problem caused by a “medication” with another “medication.” Yoga and meditation has been helpful for me too.
L and you are best of effects caused?
sorry…not sure I understand the question?
Tammy I’m still not fully recovered, but at least I got back to my routine before being able to exercise me, sleep, study, work, things that for me were impossible in the beginning. I believe that full recovery will only come with time.
Hi Marcela,it certainly is a process and – while I have not made a full recovery either – time did heal a great deal and I’ve been able to really be in tune with my body and even make it stronger than before. There are many, many more great days now than there were when I first took Levaquin. I was not taking very good care of myself before taking Levaquin, and now I make my health my top priority. I know your article will be so helpful to many. Each of us has a unique experience and healing journey. I so appreciate everyone that has shared their stories!
L asked if u managed to recover?
Tammy, I read your story and found it very good healing methods that you used to recover, did not use drugs and I think you’re right, I like you. I’ve always been a very healthy person, doing exercises 5 times a week, did not drink or smoke, it helped my recovery happen faster.
ah…well about 85 %. My breathing ,which was terrifyingly labored, is much better, thought not what it was before. I still have vision issues—large floaters, black spots and blurred vision on and off in one eye, plus light sensitivity. I still have pelvic area pressure as well as pressure around the neck where it feels like my nerves are squeezing and choking me. Anxiety is much improved but still not quite normal. I still get phantom smells too that smell like smoke or dirty ashtrays. Pretty gross. My knee just finally gave out last week, and an MRI showed torn meniscus but I still think it is related since I had started getting these little popping, crackling feelings in the months after I started Cipro.
At my worst, I was barely walking and down 30+ pounds–just very frail, weak, and feeling like death was around the corner. I had horrible insomnia where even with a pill I would get only 1-5 hours, and didn’t sleep at all for the first couple weeks. My GI was trashed, I had olfactory nerve damage so that every single thing in the world was asphyxiating (hard to explain just how horrific this was). All together I had about 30 side effects, so in spite of the remaining problems I have come a long long way. In fact, I had started exercising again, walking on the beach a lot…until this knee thing last week. 😦
Could I enquire, when you say that you had GI issues did these extend to periods of profound and terrifying constipation? If so, how did you resolve this and how long did it take for the constipation to subside?
Thanks, and sorry for probing!
It’s just that mine came on, out of nowhere, at week five post poisoning and has now been with me (in varying degrees of severity) for the past eight days…
Richard
Richard,
Are you taking a really good probioctic at least 10 to 14 strains 50 billion, also should contain a prebioctic.
Don’t worry it will happen, but you need to relax and take the probioctic.
How many months did it take you to feel somewhat normal?
I was so bad that feeling “normal” became very subjective. I thought I was much improved at around 1 1/2 years, but at 2 years I realized that I hadn’t been as improved as I had thought! We are all very different, so please don’t judge yourself by someone else’s timeline. I am now at 2 years and 4 months, and still have several side effects, but compared to where I was—there really is no comparison. Like night and day. I am now able to do most things I did before.
Thank You again! Knowing there could be an “end” to this, is giving me hope!!!!! Thank you, thank you!
Do you have much time off?
Hey Marcela,
Glad to hear you are recovering. I am 5 months out today and while I am physically better, I still have this sense of doom and gloom constantly…do you have this? I have some mild anxiety that comes and goes but I cannot tell if it is chemically induced or self induced. I want to go out and meet people but I am afraid. How are you mentally these days?
Hi John, I’m going to seven months away and many things I improved, I feel tired, my sleep is nice as well, but I still have anxiety that comes and back and depression, fear, checked my levels of vitamins B12 and Vitamin D are low, I begin to spare, I hope to help me with this
Regarding loss of sense of smell. A neurologist that specialized in taste and smell found I scored very low in smell. At another neurologist’s office I couldn’t identify nutmeg as anything. I found this site below this year. Low zinc levels affect sense of smell. I did the zinc status check and tasted nothing. Just started taking zinc so I can’t tell you if it’s worked. Essential oils have also been helpful. Chemical smells would create anxiety, so I use the essential oils to calm that down
Taken from every woman over 29/Trudy Scott/ zinc status test website:
I, however, find that the majority of my clients with anxiety, pyroluria, depression and/or sugar and carb cravings are low in zinc. I have all my clients do the zinc status test when we start working together and then we retest their levels each week until they have good zinc levels. I use zinc sulfate, a liquid zinc that tastes a certain way depending on zinc levels.
Zinc Status test (also called zinc taste test or zinc tally)
Category 1:
No specific taste or sensation – “It tastes like water” INDICATES GREATEST NEED FOR EXTRA ZINC
Category 2
No immediate taste noticed, but after a few seconds, a slight taste is noticed – ‘stale’, ‘dry mineral’, ‘furry’ or ‘sweet’ INDICATES SOME NEED FOR ZINC
Category 3
A definite mildly unpleasant taste is noticed almost immediately , and tends to intensify with time.. INDICATES LESS NEED FOR ZINC
Category 4
A very strong and very unpleasant taste is noticed immediately – bad enough to need to spit it out.. INDICATES NO NEED FOR ADDITIONAL ZINC, EXCEPT THAT FOUND IN A MULTIVITAMIN
Jaci,
I saw an intergrated Doctor who is also a medical Doctor who tested me for zinc. It was the exact opposite to what you are saying. For me the taste was foul, so I was short on zinc. My husband said it tasted like water, no need for zinc.
Sorry I can’t understand, maybe your test is different. My husband has never been floxed, I have. I also had a hair test which indicated my zinc levels were low.
Jaci,
You are right, I have just researched this and also questioned my intergrated Doctor, he told me he was wrong after re reading the lable on the tester bottle. My God you can’t trust anyone these days with your health. You have to research EVERYTHING. Thanks for your post as I would not have found out
Barbara
I am guessing it is nerve damage. I had the opposite problem after Cipro. Hyperosmia, where scents are exaggerated. It’ hard to explain just how horrific this is. Had it stayed at the level it was, I would not have been able to go on. (This was in addition to suffocating like breathing and dozens of other side effects.) Everything in the world asphyxiated me…flowers, lotions, food…even a couple drops of diluted dish soap would make me choke. It prevented me from even walking outside because the smell of the flowers was so strong I couldn’t breathe. It was as if I was constantly surrounded by huge vats of bleach—that’s how strong all scents were. After some emails with experts in the field they all concurred it was nerve damage. It is now down to about 10%—scents are still stronger than normal, but bearable. However, it was also replaced by phantom smells—usually a disgust burning smoke or cigarette smell, which again is common for nerve damage.
Hi. I am currently four months in. I am experiencing anxiety, which I never had before. Did you happen to have body tremors during this time? I tremble non stop. This is the most terrible thing I’ve ever experienced. I also have heart palpitations.
Thank you.
Anxiety is a very common side effect…not “I have to give a speech” anxiety but “someone is pointing a gun at me” fight-or-flight anxiety….so know that that is unfortunately quite normal with these toxins. I have heard it is damage to the gaba receptors. There are things you can try like measured breathing (inhale for 4 counts, hold for 4 counts then exhale for 7 or 8 counts) This can help flip you from the sympathetic to parasympathetic nervous system where your heart rate slows and your are more calm. Meditation can help too.
I had “spasms” in a couple fingers but not tremors, but I know others have had tremors and heart palpitations are again very common with these drugs so try not to get too freaked out about it. It will pass in time. Some might see a doctor, but frankly I have lost all faith in most doctors after this UNLESS they are NDs or integrated Mds. If you are very worried, search for an integrative MD in your area. I now have an integrative internist and believe it or not, a Harvard-trained integrative cardiologist.
Thank you for your response. I fear that this is never going to go away! It’s so scary and brutal to go through each day like this. Also, I have lost close to ten pounds. I am praying (I’m now at 99 lbs) that this will change. Trying to eat……but sometimes I just feel plain sick! Thank you for this hope. I keep PRAYING each and every day that God will lift this from me. I have a wonderful life, one which I would like to jump back into.
Thanks again…..you’re the best.
OH honey, I am so sorry. I know how scary it is. I had brutal anxiety, no-sleep-at-all anxiety AND I was struggling to breathe. I was terrified. But I can assure you, you will get past this. I too lost weight—36 pounds in 6 weeks. It took me months to get it back on, but part of the problem was that because I was struggling to breathe it was hard to chew and swallow! I was relying mostly on smoothies. IT is very important that you take a good quality probiotic—one with a number of different strains and 50 billion cfu. Your gut needs to get back to a healthy state. I hope you at also taking a good magnesium supplement…threonate or orotate are good. Avoid fluoride, GMOs, and any non organic meats that could contain antibiotics. Also avoid all NSAIDs. What part of the country are you in? If you post, there may be someone who can recommend a good ND or integrative doc that is already familiar with FLQ toxicity
Thank you for responding again! You are making me feel so much better. Yes, have been taking a probiotic since I swallowed the first pill of poison! Haven’t stopped. And yes, magnesium everyday. Adding a few others (fish oil, D3, multi), hoping this may help. I too have had the breathing thing….but thankfully, it is off and on. Doing acupuncture and yin yoga (just began), hoping this helps. I have been tryin to eat “clean” and keep all processed foods and sugar out of my body. I have an appointment with Neuro next week……God knows where that will get me. I live very close to Phila. (outside of Phila.).
Thank you again for your time and kindness.
All good—and yes D is very important for a number of reasons, as is fish oil. If your neuro is not familiar with flq toxicity, I am not sure how much help you will get. Mine (I later found out after reading his notes) said I was delusional and hysterical. This is unconscionable since the warning about possible permanent nerve damage is YEARS old.
I am guessing he/she may want you to do a nerve conduction test. They at very expensive, and will likely not show anything. Given the opportunity I would not have gotten one and would not have even gone to the neurologist. At the very least, it would be a good idea to take copies of the first two letters here, from doctors who were floxed (todd plumb and Miriam de Jonge (the first two listed) They explain the damage in medical terms https://floxiehope.com/2016/05/25/dear-colleague-letters-information-about-fluoroquinolone-toxicity-from-doctors-to-doctors/
I was slapped with “anxiety disorder” by the doctor who gave me the poison, weeks after taking it. Needless to say, I stopped seeing her. Thank you for your input and understanding. I feel A LOT better after hearing from you. I will continue to push through this journey. One thing it has given me, is knowing how grateful I am for my family, and people “out there” like yourself, who are so very caring.
good…hang in there. and let me know if you have any more questions
I do have one more question…..I was given .5 mg. of Ativan to help with sleep. I am thinking this is a very bad idea for my brain……what are your thoughts????? This frightens me even more (As I mentioned, this is new to me……four months after Levaquin). Thank you.
well, you definitely do not want to be taking them for long. However, my insomnia was so bad (literally ZERO hours) I was put on the generic for ambien (and even WITH them I got 1-5 hours) I used the for months and then weaned off. I believe Ativan is a benzo, which you have to of course be very careful with. I did use another benzo, Xanax a couple times. I needed dental work in the midst of this nightmare when I was gasping for breath, so it was hard to have work done. The Xanax relaxed me enough to get through it. So I would say to use as little as possible, for as short a time as possible, but I think you’ll be ok.
Thank you. I intend to stop taking it. My email address is cthecroutons@verizon.net. You seem like such a fabulous person. It would be great if I could continue to correspond with you. I would like to hear HOW the heck you got through this on a daily basis. What you did, how you passed your time and remained sane!!!
I meant no-sleep-at-all insomnia
Hi! I just read your story. I too was prescribed Levofloxacin for 7 days related to a skin infection. I am already on anti-depressant medicine’s but during the course of taking this particular antibiotic things was spiraling out of control, quickly. I was depressed more than usual, anxiety was heightened and insomnia was a repetitive thing. I feel awful! I feel like I’m in a battle for my life every day. Just struggling to be normal again. Thanks for sharing your story and enlightening me that the symptoms and everything I was experiencing was not just in my head .
I had pneumonia a little over 18 months ago. Mild case that was caught early and was treated with Levofloxacin. I am a 59 years old and somewhat of a competitive runner. After being off the meds for a few days, my first short run was met with Achilles problems and calf pain. Waited a few weeks and started the trail back to running Half Marathons again. However, starting about a month after I stopped Levofloxacin, I started having some issues that seemed like anxiety attacks about once a month. Depression was also starting to seep in. The pattern of monthly anxiety attacks continued with different levels. Some mild, some so intense that it took me 10 minutes to recover. 6 months later I was running times far from my pre pneumonia on my 10K and Half marathons. But at least I was making progress. However, I had to drop out during a few races because of the panic attacks. There was never a real reason for them. Just random, nothing seemed to really set them off. Depression started to get worse. Finally went to the Dr., the day after I had 12 panic attacks in one evening/day. 14 months after pneumonia. I was prescribed me Celexa. After 12 weeks of taking that, the side effects were just too much. Intense sweating, dizziness, lack of motivation, laziness, no endurance. I tanked in a couple of 10K’s and find it hard to run even 4 miles as fatigue sets in. Depression is worse than before I started taking Celexa. I am going to wean myself off of Celexa. I have always been an athlete my entire life. Running has been my passion. I was a good runner. A lot of hardware collected over the years. Now, I am a shadow of what I was pre Levofloxacin. Easy to blame I suppose, but I didn’t just get really old overnight. This has been mental torture for me. Levofloxacin is poison.
so sorry to hear, Clay. yes, Cipro, levofloxacin, avelox, etc all POISON. Thanks to the addition of the fluoride molecule they can breech the brain blood barrier and wreak all kinds of havoc. I was suicidal for months (although since I was gasping for breath, I am not sure it was directly from the Cipro or because I was struggling so much to breathe.) They also damage gaba receptors and effect sympathetic and parasympathetic nervous systems. I totally understand that anxiety. I was in that “fight or flight” phase for months on end. Oddly enough, before this happened I had experience panic attacks years ago so I know how terrifying they can be. I didn’t have them after, but again, the anxiety was through the roof and I cried constantly and never felt normal. Some things that can help a little “in the moment” is the change your breathing. Inhale through your nose for 4 counts and the “push” it out through pursed lips for 7 or 8. This can help put you back into the parasympathetic nervous system, which is where you want to be, if you are not being chased by a bear. You might also try some adaptogens, like maca, which is good to put in smoothies.
Glad you haven’t had any more issues with tendons. If you should in the future, look into prolozone therapy. (I did it for torn meniscus post Cipro and so far so good…10 months post injections.)
I too was in amazing shape pre Cipro. I was even fantasizing about being the oldest female competitor on American Ninja Warrior. But that ship has sailed. I suffered so much injury to my body.
Anyhow it will get better. Keep taking magnesium and doing all the other healthy stuff you are already doing.