Katie’s Story of Recovery from Cipro Toxicity

I remember the day perfectly, it was Monday, April 23, 2018. I had a super fun week ahead of me. I was turning 42 on the 26th, I had birthday festivities planned for the whole week. I also thought I possibly had a kidney stone. I had some discomfort but wanted to stick it out but decided to go to the doctor because of my “big birthday week.”

At the doctor, they discovered that there was bacteria in my urine, which was odd, since I had absolutely NO SYMPTOMS or even discomfort of a UTI. They prescribed CIPRO, 2 times a day for 10 days. I had not had a UTI in 20 plus years but I just wanted to be good for all of the festivities so I took it. I did read the warnings but stupidly thought, that’s not going to happen, they just have to say that.

Well, by the third pill, the pain in my legs was excruciating. I was a boot camp instructor and was complaining during class. One of my clients, who is an ER nurse, told me to stop taking the Cipro, it sounded like a reaction. I immediately stopped, but it was too late. By that evening, I was unable to walk without extreme pain. I laid down and when I woke the next morning, my legs were better but I called the doctor anyway and they prescribed something else. That Friday, they called me and let me know that I did NOT have a UTI. So, all of this was for nothing.

Then weird things began happening, I usually have two cups of black tea in the morning and one in the afternoon, but all of the sudden I began having heart palpitations from the caffeine, it was like what I picture a heart attack feeling like. Then I attempted to have a glass of champagne on my actual birthday and I was spinning after one ( I can hold my own when it comes to champagne). I attempted working out and did a very light workout and after it felt like every joint in my body was inflamed, to the point that I had to ice.

I was devastated, I began reading everything on fluorquinolone toxicity which caused me so much more anxiety. I was on every Facebook page and kept reading all of these horrible things. I purchased the Fluoroquinolone Solution booklet and began putting everything into play. My doctor said he had never heard of my symptoms from Cipro that it usually only affects the achilles, so I switched doctors and told the new doctor I wanted to do everything in the Fluoroquinolone booklet and she wouldn’t even look at it because it wasn’t written by a doctor. She did bloodwork, everything was perfect.

Over the next month, I tried everything, magnesium, perfect eating, saunas, NAET, CBD, you name it, nothing helped. The smallest bit of exercise hurt my joints, so I basically quit exercising. In June, I sought out a naturopathic doctor that someone else used with great success. I began going to her with devastating results. Although she supposedly successfully helped others with this, it was devastating to my body. She explained that the second process of my liver wasn’t functioning properly so she prescribed a detox. I do believe the detox helped with my liver function and helped with the future filtering of toxins but it erupted a horrible second Cipro wave. I suffered a brachial neuritis that affected both my brachial plexus and eventually my lumbar plexus, also known as Parsonage Turner Syndrome. Basically, every nerve in my body was inflamed.  My right shoulder paralyzed and the pain throughout my whole body was excruciating.  I couldn’t put any pressure on my arms, so what little sleep I was able to get, I laid like a mummy on my back. I was no longer able to do anything, I lost 20 lbs of muscle in 3 weeks via neurological atrophy.

No one had any knowledge on what to do with Cipro toxicity. The doctors I visited couldn’t find anything wrong with me. The MRIs showed tendonitis but no nerve compressions or interactions and the nerve conduction test didn’t show any nerve damage, so they just suggested doing physical therapy to help with my paralyzed shoulder, which had now become frozen.  The PT place I started at was fine, but I wasn’t making any great strides. The pain was so intense, just a slight touch to my skin was brutal. I was still perfectly following the clean eating, no alcohol and no caffeine. I was depressed, here I was, once this powerhouse, athletic woman and now I couldn’t even drive, walk my dog, hold my children or feel safe going anywhere.

By the beginning of August, the pain started moving into my legs, hips and feet. Half of my right leg was numb, my left knee cap kept slipping out of place because the nerve that services that muscle was so inflamed that I could barely walk. I was only able to wear loose clothing because anything that touched my legs caused skin pain. My legs felt prickly and my toes felt like they were sticking together. Many times it would feel like water droplets were dripping on my body or the muscles were ripping away from the bone. I was miserable and sad. I wore splints on my wrists and my knees. I had tried everything, holistic and beyond with no avail. I sought out a different neurologist who diagnosed the neuritis, explained how they can just happen from toxins, surgery, illness or even without an explanation. She did another nerve conduction, which again showed no nerve damage and sent me to continue physical therapy, as there is no treatment for Cipro Toxicity.

I went to a therapist for a session who suggested I “try” my old things. I had literally shut down to the world around me. So, I shut out going to dinner, listening to music (reminds me of exercise) or having a cocktail. Then I decided to try. I ate non-organic food for the first time in 3 months and had champagne….I was ok. Nothing bad happened. So I decided to try marijuana…..finally, I was relaxed. I had a ton of pain but I started to enjoy the things that I had cut out. Life was much different but I realized that I needed to try to enjoy the things that once made me happy because this was the only life I had, so I tried. It would be more than a year before I would truly be successful at this.

In October, I finally found what was going to help my recovery. I entered the neurological re-engineering program at Barwis. The program helps people with neurological injuries and/or diseases. The place was perfect, they train professional athletes in the same area as all of these people with these neurological disorders. I was no longer in a depressing, hospital, physical therapy setting. I was in a highly motivational arena with music blasting, athletes kicking ass and on any given day, a person, who was once bound to a wheel chair, was now crawling on the ground or using a walker.. My PT honestly saved me. He had worked with a couple of people with Cipro toxicity and several that had also suffered a neuritis. He explained that it was important that we keep moving, even with all of the pain. He explained that by not moving, I would get worse. He told me to try to forget the pain, it’s just pain, it wasn’t an indication of “injury” in my situation. I believed him and just kept going.

I kept pushing. Slowly, things started coming back.  I regained full range of motion in my once paralyzed shoulder, with constant muscle activation, I began getting stronger, I could do pushups on a wall, then on my knees and then full pushups. The muscles in my legs began to fire again, the numbness started getting less and less. I started noticing my knee was holding for longer periods of time. It took about 18 months for the pain of fabrics against my skin to go away.

In August 2019, I decided to revisit the neurologist again. It had been a year since visiting a doctor. I got so tired of them acting like I was a hypochondriac and nothing was wrong so I only saw my PT because he knew what was happening was real but I decided that I should have them redo my nerve conduction tests as I still had a lot of nerve responses.  My numbers had all improved. The neuritis had healed. The test now read that I had bilateral radiculopathy at C5 and L5, However, my MRIs do not show any nerve compression, therefore, it is determined that I have nerve inflammation and damage at those 4 nerve roots.  My neurologist was thrilled with my numbers and told me that I’m going to have good days and bad days. I have way more good days and the bad days are just a bump in the road and short lived.

In December 2019, my PT and I decided that I had successfully finished the program and was ready to be on my own. I wasn’t back to where I was pre-Cipro, but I realized that all of the weird prickles, pain and slight deficits are now a part of me, they don’t define me and they don’t control my happiness. I really believe movement is the answer. I was in so much pain for sooooooo long, excruciating pain, but with constant movement, I’m healing.

Today is July 26, 2020- Life is good. Granted, we are in the midst of a pandemic, but my Cipro Toxicity seems like a thing of the past. I feel as though I’m pretty “cured.” I have some deficits, weird sensations and some nerve damage but now I feel that I am physically and mentally 95% better.  I lift weights most days of the week and ride my  bike daily!

Here are the things that I believe have helped my recovery are

  1. MOVEMENT- it hurts but you HAVE to do it. Find a good PT.
  2. A huge support system- My friends and family were pivotal in my recovery
  3. Marijuana- I really believe it helped my pain-it’s a controversial thing but worked for me. I took capsules and tincture, I did not smoke it
  4. Celery juice- I did this every day-still do
  5. Got off ALL Cipro Toxicity Groups on Social Media- they caused too much anxiety. I got sucked into reading about all negative things. When you fill your head with negative ideas, you’ll be negative
  6. Read a lot of success stories on Floxie Hope, made me believe it can get better
  7. Finally stopped Googling everything. The answer could only come from me.
  8. BELIEVING I would get better, never giving up! Not just having the desire to get better, putting in the work EVERYDAY to get better. There were days in the beginning that I was always negative and miserable but I changed my mindset (very hard to do) and things began to change.
  9. Positive self- talk. I beat myself up and destroyed myself via my thoughts. Learning to change that made all of the difference.
  10. Self-reflection

Here are the supplements I take:

  1. Ester C -500 mg x 1 a day
  2. Vitamin D- 2000 mg x day
  3. Fish Oil 1000 mg
  4. Chelated Magnesium-  100 mg as needed, my blood levels are good so I only take if my nerves are bothering me
  5. Ubiquinol 250 mg x 1 day
  6. 25 billion Probiotic x 1 a day

*****

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.

*****

10 thoughts on “Katie’s Story of Recovery from Cipro Toxicity

  1. Bruce August 8, 2020 at 9:38 am Reply

    Thank you for writing this. Great that you are 95% recovered. So your issues were nerve related. Joint and muscle issues were from inflamed nerves?

  2. Katie August 9, 2020 at 1:19 pm Reply

    Hi Bruce,

    Unfortunately, there is so much unknown that no one was really able to pinpoint the exact cause of any of it. Right after the third pill set in I began having so much joint and muscle pain. I’m assuming that since it came on so suddenly that it was neurological and it was much different then than it was later.

    I did not have all of the nerve pain in the beginning, I was very achy, and my joints felt inflammed, alcohol and caffeine weren’t filtering out of my body so I just stopped working out, drinking alcohol and caffeine and if I didn’t workout, the pain stayed away. At the six week mark was when my nerves were really affected. I did a detox, I do not recommend, but I was desperate. My neurologist believes the detox stripped me of all of the defense protocols I had put in place with vitamins, etc and the Cipro attacked again, but worse. I had patches of numbness on my arms and legs, My skin became painful to the touch, the nerves hurt so bad sometimes, like someone was ripping my flesh from the bones, other times, it would feel like it was sprinkling all over my body or like bugs were crawling all over me.

    They told me it takes up to 8 weeks for nerve damage to show up on a nerve conduction test so that is why my first two nerve conduction tests didn’t show damage, but when I repeated the tests a year later, the nerve damage showed up. My initial MRI, 6 weeks after being floxed, showed wide spread tendinosis in both shoulders and a mild SLAP tear in my right shoulder, no injury to explain either one. The MRI of my back shows absolutely no herniations, impingements, or bulges yet my nerve conduction reads as though I have 4 nerve that are compressed/pinched. That is how they determined that there is nerve inflammation, MRI clear, but nerve conduction is not.

    I don’t have a clear cut answer as to why any of this happened the way it did and it took a long to for me to let go of having to know why. Once I stopped trying to find a reason and just focused on healing is when a lot of the recovery started. I’m assuming that since you’ve read my story, that you too, or maybe a loved one, is going through this. I wish you all the best and if you have any questions, please feel free to ask.

  3. Bruce August 10, 2020 at 8:20 pm Reply

    Thanks, yes for me it’s mostly tendon issues, the achilles tendon is the worst one, and then the neck. One year out at this point.
    So the PT helped your tendonitis? Did you have shaky hands or legs?

    • Katie August 11, 2020 at 6:30 am Reply

      Hi Bruce,

      Yes, the PT absolutely helped the tendonitis. I really believe the physical therapy helped most of my problems feel better. Movement manages my symptoms. Pain causes us to stop moving, when we stop moving our bodies become stiff and that stiffness just keeps building and pain follows. Physical Therapists help a slew of things. They’ll teach you the right stretches and strengthening exercises to get those areas working properly again. I PROMISE, IT WILL HURT WORSE BEFORE IT GETS BETTER, BUT STICK WITH IT!

      When all of my nerve stuff started, I did have shakiness in my arms all the way down into my hands. Most of my fingers were numb and to touch along any nerve was tender on my skin. My legs were shaky and I wasn’t able to walk a lot. I could grocery shop but I couldn’t make it around a whole mall. My muscles burned. It took about 18 months of physical therapy and doing everything they told me to on my days off from the gym to get better.

      Find a good physical therapist, I don’t know where you live but if you have a Barwis anywhere near you, go to them!!! If not, there are plenty of excellent PTs. Explain your situation and get moving.

      Everyone’s story is different when it comes to fluoroquinolone toxicity but in general health, physical therapy helps everything. They are prescribed for injury, general health, weight loss, cardiac health, nerve problems, paralysis and so much more. If you look back at many of these recovery stories on this site, so many people credit their physical therapists for their recovery. Good luck my friend, you can do it. This doesn’t have to be as good as it gets, you can heal.

      • Taryn October 12, 2020 at 3:14 pm Reply

        Hi Katie, I am so happy you are mostly recovered. I’m 8 months out and still having knee, calf and ankle issues. Did you by chance have knee tracking issues while floxed? I get a snapping pain when I extend my leg or if I try to Bear weight going up steps. It keeps me from doing a lot. Like even if I catch myself from falling it causes great discomfort on my left knee. I hope I heal up to a point of being able to walk up and down steps normally. The neuropathy has been a pain too lately. Like tight burning calves and sometimes it feels like I have cold water pouring down my calves. Lovely I know. Hope to hear back from you.
        Taryn

        • Katie October 13, 2020 at 2:39 am

          Hi Taryn,

          I’m so sorry you’re going through this. I too had knee tracking issues. My muscles had atrophied so much that the muscle wasn’t holding my knee in place. I did 18 months of physical therapy and built up all my muscles again and it has helped tremendously with the nerve pain and knee pain. The water thing happened too, it felt like it was sprinkling all over my body and the burning still happens every so often, I think I’m just used to it all and I realize that the pain doesn’t equate to injury so I just keep going.

          I think what advice I’d give anyone with this situation or any other chronic pain is to give it time and to keep moving. Find yourself an amazing physical therapist and let them help you get back on track. The pain for me was so severe that I just quit moving and things got worse. Once I began moving regularly, it started getting better. Keep your head high, believe you will heal and keep moving. I think things will get better in time.

  4. Bruce August 13, 2020 at 5:50 pm Reply

    Thanks, I have been mostly doing chiropractors and just switched to PT. The gyms are all closed in NY/NJ and have been for months. I noticed I went down hill quick after this happened. Sounds like PT helped you with the shaky arms and legs.
    The sauna was really helping me too. Sauna seems to help with neuropathy.

  5. Kristine August 13, 2020 at 6:18 pm Reply

    Dear Katie,
    I am SO proud of you! But, I am also not surprised that you overcame this horrible situation because you are a truly amazing person inside and out! You are a goal setter, a fighter and an overall positive person. Life knocked you down for a short time (that I am sure felt like forever), but you hit back up and never gave up on yourself! So glad because, selfishly, I get to do all the fun stuff I love doing with you, again!

  6. Taryn October 13, 2020 at 1:15 pm Reply

    Thank you so much for getting back to me.
    I do see a PT but have to get back to seeing her. Wasn’t able to go the last few weeks. Would you say any specific workout helped? Also how are you in terms of eating? Are you able to eat what you have before floxing or are you on a strict diet? I’m on a vegan diet, no soy and no gluten. I hate it! And hope to be able to eat meat again or maybe even some regular bread lol.

    • Katie October 13, 2020 at 5:52 pm Reply

      Hi Taryn,

      I went to Barwis for PT. They have a neurological re-engineering program that really helped me. They work with a lot of neurological diseases and professional athletes from all over so the workouts were not any basic hospital/dr. office PT, they’re all about getting your body moving and getting it strong. My workouts are close to where they were pre-Cipro. Lifting weights is the most beneficial to me, it really helps my nerves feel better. I workout 5 -6 times a week.

      In terms of eating…..in the beginning I was super strict with food, no alcohol, only organic, nothing processed and like you, I was miserable. I wasn’t socializing or going out to dinners then I decided to try all my pre-Cipro things and I was fine. I socially drink, I still eat really well but I’ve always eaten really well but I can eat whatever I want if I choose with no problem. I can take Advil and Tylenol without incident.

      When I finally stopped looking for answers that I’d never find the answer to and learned to just accept what was happening to me and to move forward towards healing is when I got better. I spent so much time researching and identifying with all of these other people but everyone’s story is so different. Focus on getting up and moving everyday, try to eat the stuff you ate before and see if there is a reaction, if there is, don’t do it again. I was afraid of everything and once I lost the fear and focused on my healing and got off all Fluoroquinolone Toxicity groups, I began to heal.

      It was a tough road, I have a learned a lot about myself, I learned that I had to believe and fight everyday that I’d get better, I learned I was my worst enemy, I learned that fear held me back and was debilitating. I learned to let go of my Pre-Cipro life and be okay with it, I learned that I needed to be my biggest cheerleader. Believe in you, remind yourself EVERY day that you will get better, work for it. You’ll get there.

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