*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.
Karen’s Story –
Here is Karen’s story, written by Karen. I asked a couple of questions, which are noted.
In the last five or so years, I had UTIs for the first time, beginning when I was 50 years old. Although I only weigh 115 pounds, I inherited a predisposition for diabetes (now prediabetic), and my blood sugar is slowly creeping up– and so were the incidences of UTIs, which can be triggered by sugar. Dealing with this new ailment, UTIs, I had heard horror stories about how painful it could be, and made sure I had antibiotics (some, maybe all, Cipro) so I could take them at the first sign of an infection. I also made sure that I had a dose before I went on an extended nature vacation in 2010… sure enough, I got another infection on the trip while in a remote national forest and took Cipro, so grateful the doctor had prescribed it in advance!
About two weeks later, I had deep aching in my legs. I couldn’t walk without it intensifying, and it felt like a vise was concentrating in one area on both legs. Wrapping them tightly cut out the throbbing, and I couldn’t walk or sleep. I tried to figure out what caused it, not yet linking Cipro. Then my hands were attacked. It felt as though bolts of electric shock stabbed the tops of my hands, and the outside edges were swollen, blue, and so painful that I couldn’t remove jar lids, open doorknobs, cut food… Sleeping was making my hands worsen, so I started wearing braces to prevent them from twisting – basically keeping the tendons immobile as much as possible.
Doctor visits began, and tests for Rheumatoid Arthritis, Carpal Tunnel Syndrome, Myasthenia Gravis (even have the drooping eyelids), and Lyme disease all came up negative. Since it was symmetrical on my body – although intensity of pain was sometimes more concentrated on one side – I figured it was systemic and it seemed to me that it was a tendon issue. Also, I had issues with my ankles aching and digesting broccoli for the first time.
Researching tendon problems, I began noticing a link to Ciprofloxacin… of course this is now maybe a year into my floxing. My doctor looked at me doubtfully when I mentioned my problems might be linked to Cipro. I had read that doctors won’t talk about it or even believe it, and fully expected the reaction he gave. However, the attending male nurse said it was possible I was right.
At this point I gave up on doctors.
Two years into this, I had some time on my hands for about ten days. Admittedly, I was a bit down, and didn’t make plans to keep busy with friends/family. Just felt like withdrawing and so I sat on the sofa and read a bunch of books, ate, and slept. I just barely moving around.
Well… I started feeling better. It was pretty marked improvement. I wasn’t sure if I was better due to inactivity, allowing tendons to repair themselves, or if the time would have been a factor. About this time I found the FTG (Fluoroquinolone Toxicity Group) fan page. My journey has already become history, although I do have occasional flare-ups, just now recovering today from a recent one that affected my hands mostly, and began about five days ago. Thankfully, the intensity has never been as severe as before.
Lisa’s response – Karen, your story is really interesting. So you just somewhat suddenly felt better after years of feeling bad – am I understanding that correctly? And nothing triggered your recovery other than taking it easy and resting? If I’m understanding you correctly, it sounds like your body was just ready to recover – suddenly. Kinda crazy, huh? It’s so strange that this happens at all, and that each of us experience such different symptoms, and that the recovery process is different for everyone. What is your life like now? Can you do the things that you could do before you were floxed? Do you have any advice for other floxies? I look forward to hearing more about your story, if you would like to share.
Karen’s Response – I think it was a combination of being two years from being floxed and complete rest that gave me a turning point. I have persistent relapses, but probably bring them about by trying to use my hands/legs the way a normal person would, such as vigorously scrubbing or prolonged hiking. At least the relapses are light and short, with a few exceptions. No, I can’t often do everything I could before without paying a price, but life is good.
** 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.
After a year and a half, in September 2013, my symtpoms suddenly disappeared as well. I have flare ups – mostly if I don’t eat right or eat something that has been exposed to pesticides – every once in a while, but I suddenly experienced a lessoning of symptoms. I was in my third trimester of pregnancy when that happened. One thing – I was put on iron supplements b/c I was really anemic.
My left eyelid slightly droops, Karen’s said her eyelids drooped. I wonder if that also went away for her
I am 20 months in recovery from Cipro poisoning, nearly better, but the side effects in my tendons continues to return. My best results have come from vitamins, massage weekly, but most importantly from weekly acupuncture & a daily mixture of herbs from the acupuncturist. In addition I spend countless hours in my swimming pool each day. The key is to remove the fluid (mucus) that Cipro creates in the body, and increase the blood flow to extremities such as legs, and arms. Good luck & good health to all!
I continue to heal, with the slightest relapses sometimes occurring. My hands may never be as strong as they were, but I get along very well. I pay attention to what I choose to do… may kayak with someone, but not alone – just in case!
As for the eyelids, they remain the way they drooped, but I have chosen not to do anything about them since they have not worsened.
My best to you all!
Karen, Can you tell me more about your Carpal Tunnel Symptoms? That was one of my symptoms and it was very fast and aggressive and I had surgery on my right hand last July, just 3 months after my first mild CTS arose. I just began having symptoms in my left hand in March and may be recommended for another surgery. I’m really trying to avoid this now that I believe it is just part of the FQT and hoping that it will heal with time. Did you ever have surgery, did you do anything to help. I just began acupuncture and I’m hoping it is helpful for this.
Hi Erica Glad to ear that you are recovering May I ask you how many acupuncture sessions you have had? Lucy
Hi, I’m trying to post all over this site to let EVERYONE suffering from this horrific, debilitating affliction know that I think I found my CURE!!!
Go to homepage (located at top of page) and read my posts starting on Feb. 2nd and the ones following.
It’s too much to write again
I took Levaquin early May, 2015. I went through gluten-free sugar-free dairy free soy-free and nothing seemed to change. I have severe tendon issues which migrate throughout my body or just stay bad all the time such as my rotator cuff and my tennis elbow’s. I am very scared because I have just developed peripheral neuropathy on my feet. the neurologist wants me to have an EMG which I am scheduled for. I feel like maybe I’m wasting my money. Maybe I could self heal. I do a lot of the same stuff that Karen and Lisa talk about to keep positive. I never had loss of energy but believe my muscles are deteriorating due to the pain I have in my arms and legs. I have also been losing weight. I work out 5 instead of 6 days a week I still do it! I wonder if I even have a trace of flouride if that is poisoning my body more. I have to take your advice and keep positive, meditate, keep the Epsom salt bath going and get massages. The only reason people know that I’m hurting is because I mention my symptoms. I go about my day like any other day. I smile. I work hard at work. But need to work on being better with my husband at home. I really do need to take your advice and keep positive all the time. Thank you for sharing a positive story. I hope one day my neuropathy will get better. My tendons definitely do not hurt as bad as they used to when I was in physical therapy last October. Maybe that is a sign of Hope.
After sometime now, I reread my story that I wrote here and have truly forgotten just how bad things were for me. However, I sure remember them after reading through my story again. Things are still 90-95% better than back in those days I first described to you all. My point, though, is that you may also be one of the many who put it behind you someday.
I visit the FB page from time to time to give you all hope by letting you see how I have healed. Just as others have also written, we seem to go off into the wild blue yonder after we are better. I think about you all, and I send you positive healing thoughts. – Karen
Karen and Lisa,
I’ve just become aware of this group thru a friend. I had Cipro ear drops with steroids. 5 days later I was prescribed Levoquin.
Symptoms began but I had not concider ed the floxie as am issue.this was in June 2016
But I can tell you I’ve experienced complete exhaustion after activity. On days that I an active all day, it takes 2 days to get myself off the sofa. I don’t have tv. Just internet so I spent a lot of time when ever I could actually think researching my symptoms. Fybromialgia, rum. Arthritis, depression, etc all came up. But nothing about Cipro or floxie. My doc latched on to depression. But that seems to be only one symptom caused by the toxisity.
For now, I rest and try not to pile on too much. Also take supplements abd will begin Accupuncture soon. I’m eating whole food plant based. It’s only been a week but there is a noticeable difference.
I took an asperin for the pain yesterday as I ran out of Tylenol. The burning pain became so fierce I had to just lay down and wait for it to subside.
Karen, I also had chronic UTI’s for the past 6 years and have taken many antibiotics with no obvious symptoms. I then took Cipro and have had troubles since. I have had two UTI’s since my last dose of Cipro, one that required me to take antibiotics and one that I worked through and cleared without them(which I did not know was possible). I am terrified about getting another UTI and having to take any antibiotics again. After your Cipro experience, have you had additional UTI’s and if so, what have you done to treat them and have you had additional issues? Thanks, Lorie
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