Fluoroquinolone toxicity

This is from the same writer of the last comment. The details are as follows. After day four of Levaquin, an attempt to heal UTI. I had a Immediate Neuropathy in my feet and my hands. My mental status changed drastically. I could no longer focus at work. I could not remember all the things that were hardwired in my mind, I could not use a computer and I could not treat patients as I had for the last 30 years. I had seen a spectrum of physicians as had many contacts. Other than the obvious neuropathy. My other complaints were ignored. Inability to sweat, lizard type skin I was talked down to and neglected when I told them the massive number of cognitive changes that it happened. I did cognitive testing for my entire career of over 30 years. My executive functioning skills quickly went down with motor apraxia and ideational apraxia all kinds of mental symptoms. The extreme weakness from being a half marathoner, to barely being able to walk slowly due to the tendon, soreness and tightness in my whole body. When the allopathic physicians could not figure out what was going on. They threw me in the mental category. Suggested that I went to a behavioral facility where things went extremely bad. My weakness and pain from previous UTI returned severely, and at one point I actually attempted suicide. They sent me to a lockdown facility at that time which was very nasty and did not assist me in anyway. I was put on very destructive anti-depressant antipsychotic drugs and benzos to assist in sleep, which was totally destroyed since the Levaquin became a total insomniac. Sometimes could not sleep for a week at a time not even for an hour. Again, all the symptoms were so extreme and so severe. I’ve only worsened to this day. Stopped driving vision from being good is now severely impaired. It is affecting my entire body function. I have many central nervous system problems as I no longer have a reflexive cough or reflexive sneeze. multiple auto immune type symptoms. Only the naturopathic doctor seems to have a clue. I have tried multiple supplements with minimal results. The muscle wasting is phenomenal and I have gone from solid rock to pure cellulite and do not engage in normal community life functions anymore. Tried strengthening exercises, and things just got worse. I could pound out several bar dips or pull ups. Now I can do none. This seems to be like a progressive neuro physiological issue. I can’t coordinate shaving or simple ADLs. I just go from the bed to the bathroom to the kitchen and stare at the ceiling. I was the most active stable person and a high functioning individual you will ever find. Highly engaged in world events, news politics, everything. Also, an avid bowler . It all ended after Levaquin. The allopathic doctors just deflect deny or can’t understand it. It has really made me want to scream. As people just do not believe how so many resulting symptoms can happen. But with mitochondria depletion, I would think nothing is off the table as in my case. But nobody can seem to put their finger on exactly what it is. But my total body dryness and lack of saliva, it is very similar to Sjogren’s syndrome symptoms. Was 60 years old going on 40 with zero health or mental issues. After day four of Levaquin it is phenomenal what happened to me. My wife has done everything for me since that time. I am essentially bedbound and ignore the world around me. Have not gone to a store or a bank or interacted other than a few doctors appointments which I was dragged to as I have become extremely socially impaired. The anhidrosis almost entire body unable to sweat affects everything. I do have bad psych issues now. But it all stems from the onset after the Levaquin. If there is anyone out there who has suggestions for one that is 3 1/2 years post onset please let me know.

Welcome @xerky1024, I'm sorry you had to retype your post. I'm not sure what happened but thank you for taking the time to type your story again. I can't even begin to imagine how difficult it has been for you to be given something that was meant to help you get rid of a UTI and then ends up being your worst nightmare.

I know you've done a lot of research but I thought I would share a few links in case you haven't seen them.
--- Treatment of the Fluoroquinolone-Associated Disability: The Pathobiochemical Implications: https://www.semanticscholar.org/paper/Treatment-of-the-Fluoroquinolone-Associated-The-Michalak-Sobolewska-W%C5%82odarczyk/9eea355de62ed4adf184a9dd80bf7b07e1e0637b
--- Antioxidant therapy in the management of fluoroquinolone-associated disability: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667412/

Mayo Clinic Rochester also has a clinical trial that is active:
--- A Study to Evaluate Biomarkers of Fluoroquinolone-induced Mitochondrial Toxicity: https://www.mayo.edu/research/clinical-trials/cls-20464386.

Have you done any research or tried any treatments to help with your neuropathy or Sjogren's symptoms?

Thank you for responding to my notes. Well, a close physician friend of mine a physiatrist took me to see a naturopathic physician. He seemed to be the best most well informed regarding this. He put me on several supplements, including a ATP and some other things that I was unfamiliar with. It was difficult for me to follow the number of recommendations in my state that I was in. As part of his long list of recommendations was taking these very large pills, which were difficult for me to swallow due to the dysphagia which was one of the symptoms that came upon me. Making it difficult to swallow. He also had wanted me to go on a very strict diet, which I attempted, but due to lack of finances, could not keep up with the multitude of recommendations. He wanted me to go on a diet, including things like wild salmon and very specific food items which I did not have easy access to. Also the 20 to 30 minutes of exercise per day. Which is very difficult to do when you are afraid your tendons are going to snap just walking around. So in terms of research, I probably should have done more. I got a book called the Levaquin toxicity solution by a woman name Carrie something . And I did a lot of the things that she said, including rubbing magnesium topically on all my joints and tendon areas. It did not seem to help I tried. But my mental capacity and skills had been affected so much that my independence just was declining so rapidly at the time I was overwhelmed, as well as the depression I just shut down in many ways, and simply gave up. I truly didn’t think I would still be around this long due to the severity of all my symptoms. I will look up the articles you suggested. If I can’t, I will have, my wife or friends look at them or make copies for me. Thank you very much for your willingness to share and your empathy.

Flagyl is also neurotoxic and has a black box warning from the FDA.

Took Fluoroquinolone 5 weeks ago for UTI. 0nly took 2 doses of 500 mg pill when I discontinued the drug (Levaquin) due to tingling in legs and toes. Currently dealing with anxiety, palpitations and random pains of unexplained origin. Heel pain started on day 7 after stopping the drug but seems to be getting better with rest. Using Buspar to help with anxiety. Anxiety is hard to get in control. Just don’t know which medical specialty would deal with this. I am hoping that all this abates .

Welcome @mlmal, I can't imagine how difficult it must be for you to have a UTI treatment make things worse. I'm glad to hear the heel pain is starting to get better with rest. I don't think you are alone trying to get anxiety under control. I'm wondering if the following article might provide some suggestions.

--- Doctors Who Treat Anxiety: What to Say and Ask
https://www.healthline.com/health/anxiety-doctors
Mayo Clinic also has some information on diagnosis and treatment that might be helpful - https://www.mayoclinic.org/diseases-conditions/anxiety/diagnosis-treatment/drc-20350967.

Have you talked to your primary care doctor to see if they have some suggestions?

I took levaquin and Flagyl together 7 years ago for diverticulitis and immediately lost my ability to taste and smell forever. Such a loss. I already had a lot of neuropathy issues so probably wouldn’t have thought to blame those meds if there was any change in that.

@californiazebra - Interesting, I had a bad case of diverticulitis in 2005 and again in 2007 and both times, I was given Cipro and Flagyl. When you think about what could have possibly initiated the first signs of PN, I suppose strong antibiotics would be a possible cause. Of course, the antibiotics were necessary and will never know for sure.

My husband was prescribed Cipro for a presumed UTI by an oncall doctor he'd never seen. He snapped his Achilles tendon some time later and because he was 80 something (my husband not the Ortho) the Ortho would not do surgery. It has had such a negative effect on his life. Subsequent urologists have questioned that use of Cipro and Orthos have said he should have had surgery. He now has Cipro listed as "allergy" in his medication list. I won't take it either.

My sister in law had a terrible experience with Cipro that left her somewhat disabled. I have taken it without any bad effects. It is so strange that certain drugs really affect some but not others! Be careful with Cipro. Avoid it if you can.