Renee’s Story – Cipro Reaction

Renee C

*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. 

Hello, folks. I’m posting to let you know that there is indeed hope and healing–even after the worst floxing.

I was floxed in July 2013 after taking 2 Cipro pills.

I could barely walk. In fact, I couldn’t walk without a cane or crutches for close to 3 months. There were a few times when I needed a wheelchair to get around the mall, for example.

Side effects were awful, immediate, and ever-changing:
• Neuropathy in hands and feet
• Partial paralysis of my left toes
• Joint popping and crackling
• Severe fatigue
• Vertigo
• Excruciating pain in both Achilles
• Plantar fasciitis
• Dental pain/jaw pain
• TMJ symptoms
• Loss of muscle tone. It felt like my stomach, intestines, and liver were going to fall out if I leaned forward.
• Joint deterioration. It felt like my thumbs were going to fall off.
• Arthritis in both hands
• Severely dry eyes
• Insomnia
• Palpitations
• Waves of anxiety and despair

After I was floxed, I joined this very Facebook group (but mostly just lurked). Someone in this group—and forgive me, I don’t recall who—posted a link to Dr. Terry Wahls’ TED talk about how she treated her MS with intense nutritional therapy.

I figured that if Dr. Wahls was able to reverse her MS symptoms, I might be able to do the same thing.

Long story short: it worked. It took time, but it worked. I followed her diet and supplemented with CoQ10, magnesium, Vitamin C, Vitamin D, and fish oil. I’d been on a strict gluten-free diet for over 10 years—my husband has celiac disease—so adopting her diet was actually quite easy for me. (Going gluten-free might be the biggest challenge for some folks, but it’s essential, I think.)

As of this writing, I’ll say that I’m between 95 and 100 percent better. The only lingering issues are occasional neuropathy in my hands upon waking—it gets better in about 15 minutes—and occasional joint popping.

But! I’m able to run again, able to lift weights again, able to do pretty much everything I did before being floxed. I’m here to say that you can get better. It’ll take some work, but you will get better.

 

Note from Lisa – If you purchase The Wahls Protocol through THIS LINK, a portion of the proceeds will go to The Quinolone Vigilance Foundation.  Thanks!

** 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.

33 thoughts on “Renee’s Story – Cipro Reaction

  1. Amy Regutti February 17, 2015 at 1:03 pm Reply

    Wow. Thanks for sharing. I took two cipro pills 7 weeks ago and have identical symptoms. I am working very hard toward recovery and am thrilled for you. I look forward to some normalcy.

  2. gillian February 17, 2015 at 2:26 pm Reply

    how long will it take .My husband has been given cipro on 3 occasions but on the third he only took about 2 days worth. He has had a bad time of it over the last two years. He last took cipro in early sept. Just wondering how long the Achilles tendon will take to heal and the connective tissue in his hands and feet. They feel like they are bone touching bone and sharp shooting pains

  3. Jodi February 18, 2015 at 4:36 am Reply

    I took 200 cipros and haven’t walked in 15 months from athlete to wheelchair I want to know this healing process

    • Lisa Bloomquist February 20, 2015 at 9:32 pm Reply

      I am so, so, so sorry for everything that you’re going through, Jodi! I hope that you find some healing! The Wahls Protocol is what helped Renee and you can find out more information about it through reading the book, The Wahls Protocol by Dr. Terry Wahls. I hope that it helps you as much as it helped Renee! Everyone is different and I definitely recommend that you look through the stories on this site. There are lots of good stories of hope and healing and lots of good advice in each of them.

      Hugs,
      Lisa

  4. M P White February 20, 2015 at 5:11 pm Reply

    How do you know that Cipro is the culprit rather than the condition that Cipro was to treat. I took ten days of 500 mg/cipro per day to treat a corneal ulcer. now I have severe dry eye and other annoyances.

    • Lisa Bloomquist February 20, 2015 at 9:30 pm Reply

      Like a lot of “mysterious” illnesses, determining whether or not you have been “floxed” by the cipro is often a matter of researching and ruling things out. If you have other autonomic nervous system issues in addition to dry eyes (things like digestion shutting down, sweating too much or too little, trouble regulating your blood sugar, increased heart rate, etc. are autonomic nervous system symptoms), you can say that it’s more likely that the cipro caused all your issues because corneal ulcers don’t do those other things. Those ANS issues are just examples of potential symptoms of FQ toxicity. I’m happy to list more if you’re interested. Here is a fluoroquinolones 101 type post that may be helpful too – http://www.hormonesmatter.com/fluoroquinolones-101-antibiotics-to-avoid/

      Regards,
      Lisa

    • Louise May 31, 2015 at 4:08 pm Reply

      The reason we KNOW our lives ended after Ciprofloxacin is because a LOT of us, including myself, had absolutely NOTHING wrong!

  5. outbackwoman February 20, 2015 at 5:20 pm Reply

    What does being ‘floxed’ mean. I have not heard of Cipro, and wonder if it goes by another name in Australia. I have many of the symptoms you mention.

    • Lisa Bloomquist February 20, 2015 at 9:24 pm Reply

      Thank you for asking! “Flox” is a short-hand term for fluoroquinolone antibiotic toxicity. Fluoroquinolone antibiotics include ciproFLOXacin, levoFLOXacin, moxiFLOXacin, oFLOXacin, and a few others. Here is a list of fluoroquinolones / quinolones – http://en.wikipedia.org/wiki/Quinolone They are broad-spectrum antibiotics that are used for many infections. Adverse effects can be severe and long-lasting (but aren’t always). Some tricky things about these particular drugs is that adverse reactions can be delayed for weeks or even months after use, that there seems to be a tolerance threshold for these drugs (people can tolerate them well… until they can’t – sometimes after 2 pills, sometimes after 20 pills, sometimes after 200 pills), and the fact that a multi-symptom chronic illness from an antibiotic is absurd. If you look on the Links & Resources page of this site you’ll get a lot of good information about fluoroquinolone toxicity. I recommend starting with this for an over-view – http://www.pbs.org/newshour/bb/health-jan-june11-antibiotics_06-16/

  6. Roberta McDonnell February 21, 2015 at 8:15 pm Reply

    PS I also had weird painless bruises all over and recently developed mild tinnitus which waxes and wanes –
    Are these toxicity signs too? Glad of any info thanks 🙂

  7. Roberta McDonnell February 21, 2015 at 8:25 pm Reply

    Not sure if my first query went through – briefly thank you for this helpful site – I wonder if flagyl and doxycycline and augmentin combo could do this same toxification? Treated for supposed throat and chest infection I developed neuro symptoms (anxiety, akathisia, muscle pain, muscle wasting, weight loss, brain fog, insomnia, joint cracking, head and earache, shooting eye pains, blurred vision and IBS) as well as a sudden menopause – severe hot flashes, night sweats and total amennorhoea – I’m 53 and was very active. Improving with time, walking, meditation, self-CBT and no medication except supplements and a modified Wahls diet ( I need some additional starch in the form of brown rice and bananas to avoid serotonin- depletion depression) – glad of any info, thanks again for your kindness and diligence with this project to support others 🙂

  8. b February 25, 2015 at 1:42 am Reply

    I just talked to friend, who (she ) took over 500 (yes, five hundred) pills of quinolones. She ruptured her tendon last year during mild level sport. Also she has sth called ” fibred muscle”. She also had neuropathy and lots of nightmares when she was taking the quinolones.
    She is probably the one who is most able to tolerate quilonones that I ever know in person.
    I just told her about quinolone toxicity. After reading, she told me her problem might be related to quinolones.
    Everyone is different. But it looks to be very sure that everyone will be affected by quinolones once he or she has taken much enough. And people recover in different speeds.

  9. Karla April 8, 2015 at 9:03 pm Reply

    Hi Renee,

    I was floxed 2 weeks ago. I was given Cipro to treat a UTI that I didn’t even have. I am so happy to have found this website for support. I have acted immediately to treat my symptoms. I am lucky to be able to walk. The NP on my right foot can act up but I do my best to just get through it. I know I have a long way to go. I’m keeping my fingers crossed that no new symptoms surface.

    So far its been:
    Pain in joints, arms, hands, legs, fingers, shoulder, feet, toes,lower back
    GI issues
    Vey Dry Eyes
    Tightness on my head
    Dry Mouth
    Anxiety

    Since I am new to all this. I wanted some guidance with these questions:

    1, What helped with the dry eyes? Did they improve with time? I visited the eye doctor today
    and he said that I have scratches along my corneas from the Cipro. I was having trouble reading email on my computer due to the brightness. He advised me to purchase some eye drops to help moisten them. I live in New Mexico which in itself is already a dry state. I have been using the humidifier at night and using warm compresses.

    2. I’ve cleaned up my diet to organic foods. No sugar or caffeine. Any other suggestions to clean up the gut? I do take a probiotic and drink plenty of water with lemon. I’ve already lost 6 pounds in two weeks and do not need to lose any more.

    For my anxiety I do acupuncture and mindfulness. Sometimes a wave of depression hits since I can no longer run or exercise like I use to. Most of my time has been spent visiting doctors and alternative health centers for treatment. I also did the glutathione injection.

    I know I have to stay positive. I have a younger daughter who keeps me fighting to get through this horrible time. I have faith and believe that I will get better.

    • Aron Lycele August 28, 2016 at 4:57 am Reply

      Karla, sorry to hear about your floxing. It’s been a while since your post. I was wondering how you are doing today?

  10. Selma April 13, 2015 at 9:39 am Reply

    What level of the Wahls protocol were you on i.e grain free/paleo, paleo plus etc. how long did it take for recover? How long were you ill before you started the wahls protocol?

  11. helene April 13, 2015 at 6:07 pm Reply

    i wud go to the level three as quickly as possible. no grains, def not gluten, no diet drinks of any kinds, no dairy except possibly raw, pastured, cultured fullfat dairy, no eggs if you dont tolerate them…otherwise, pastured eggs are very high in nutrients. these things are super important. so is fermented codliver n high vitamin butter oil.
    my heart goes out to ppl WRECKED by Big Pharma n their accomplices, the MDs.

  12. Andi April 26, 2015 at 1:52 pm Reply

    Which phAse of the diet are you following. I can follow the second level but honestly don?t think I could do the third phase.

  13. Jean McTaggart April 27, 2015 at 5:23 am Reply

    Thank you all very much ! I have ms and have benefitted TREMENDOUSLY by Dr wahls paleo! In addition I had a hair analysis done which told me which vitamins and minerals I was deficient in . I also had my many metal fillings changed to bio identical fillings . Heavy metal detox isn’t fun but I feel better every week ! I will be in the USA for four months . I am no longer up to date with common knowledge so truly appreciate all of your sharing ! Through good food , exercise, a few vitamins and minerals , faith and humor I hope we can all regain our health 💝

  14. Julia Bjerre April 27, 2015 at 12:59 pm Reply

    Thank you so much Lisa for your story and link to the Wahl protocol but also for taking the time to answer questions and educate others. My sister and I both have Lyme disease and she unknowingly took 180 Cipro pills. The Dr never warned us this could cause problems and as we have a herxing reaction to antibiotics, it was easy to confuse the herxing with the Cipro damage. She is bedridden now and in great pain however the symptom that bothers her the most are pseudo auditory hallucinations… pseudo as she is no schizophrenic and hears noises inside her head not outside is No one is telling her to get a knife (I hope 🙂 ) but she hears loud jackhammers, gongs, music, screaming, …a variety of mostly unpleasant noises, at least 5 at a time competing for attention. Have you heard of anyone else with this and if so,, how did they get rid of it???? Thanks for any help you can give us.

  15. Sheryl Bjerre April 27, 2015 at 2:18 pm Reply

    Thanks Julia for leaving a post on my behalf. Yes, I took 180 doses as with injections of amoxicillin as a treatment for advanced chronic Lyme, Bartonella. My left arm felt like taut strings on a guitar, if I tried to move my pillow or reach for bedside glass of water the pain kept shooting up my arm over & over. I could not raise it, 3-4 yrs later at 75%. I was never forewarned, I thought I was being brave enduring the “die off herxing effect” of toxins. No, I was continuing to injure myself horribly with no clue it was an oral antibiotic, I never should have taken.
    The Lyme doctor in Seattle told me in a lecherous manner to take magnesium, I’d have tendonitis for a long time. That was the least of it.
    I tried to go on IV antibiotics, I’d tried for many years to get & finally was able thru a ND. I discovered I could not tolerate ANY ANTIBIOTIC, the burn thru my system was horrific. Peripheral neuropathy, as if my whole body, even in my tongue has gone to sleep. Really nasty nerve pain, esp in my left foot.
    It doesn’t end there. I have terrible auditory hallucinations. All the time. 3-4 at the same time, I am not exaggerating. I took Ciprofloxacin in 2011, it has made me wish I could go back to having 12 years of hard Lyme, Bartonella & Babesia which was difficult with pain esp arthritis.
    I haven’t been on any treatment – Ciprofloxacin swallowed all my hopes for ever getting well. The complications are beyond any doctor’s expertise, esp the auditory hallucinations 24/7, I fear going out of my mind. Needless to say, this Dr just abandoned me, probably fearful of a law suit. My pain specialist, nor the neurologist who ran many tests (reduced uptake) nor my GP know how to treat pseudo auditory hallucinations. It’s not tinnitus though I do try various white noises & sounds but even that causes a competitive reaction.
    Finally the FDA has put out a more serious RISK, DO NOT prescribe but not one doctor nor nd knew about Ciprofloxacin (levaquin, there’s a 3rd), I told them to read the FDA alert.
    I have been told the Lyme Dr in Seattle is STILL prescribing Ciprofloxacin to Lyme patients, who like myself, will think it’s the herxing experience, not the drug.

    • Lisa Bloomquist April 27, 2015 at 3:09 pm Reply

      Hi Sheryl and Julia,

      I’m so sorry for what you’re going through, Sheryl! Fluoroquinolones add massive insult to injury when given to Lyme patients. And, to add to the insult, many doctors deny the dangers of fluoroquinolones, as yours has. It truly boggles my mind that a drug that is as destructive as ciprofloxacin would be seen as appropriate to be given to someone who is already chronically ill with Lyme. I understand that they’re looking at it as if it’s a powerful antibiotic, which it is, but it’s also incredibly destructive to the mitochondria – the energy centers of cells – and leads to a massive amount of oxidative stress, which further injures people who are already sick with Lyme. Ugh. It pains me and I’m sure it pains you more – you’re living it and I am so, so, so sorry for what your’e going through!

      A lot of people go through severe psychiatric symptoms when dealing with FQ toxicity. Though I have heard of similar symptoms to the auditory hallucinations that you describe, auditory hallucinations aren’t necessarily “typical.” I’ll tell you what has helped other people though, and hopefully it will help you!

      I’m not a doctor, so please research anything that I mention appropriately given what my recommendations are – just words of advice on the internet.

      1. Supplement uridine. Uridine helped me a lot and it has reportedly helped other floxed people too. It has been tied to helping people with psychiatric illnesses – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3080753/
      2. Kava has helped people with anxiety and it may calm the auditory hallucinations. Please note that it isn’t for long-term use.
      3. Kratom has helped people with both pain and anxiety.
      4. There are a lot of potentially helpful things mentioned in this post – http://www.longecity.org/forum/topic/54028-treating-anxiety-safely-effectively/
      5. Get lots of B vitamins and trace minerals. I take nutritional yeast – it has B vitamins and trace minerals in it. I believe that it also has uridine in it.
      6. The supplements mentioned in Ruth’s story may help – https://floxiehope.com/ruths-story-cipro-toxicity/

      I suggest that you don’t try all of those things at once. Being methodical is probably a good idea.

      Chiropractic and/or acupuncture treatments may help.

      I took a class called Mindfulness Based Stress Reduction through my health insurer (Kaiser Permanente). It was immensely helpful. I suggest taking any sort of meditation/mindfulness class you can find.

      If you are inclined toward spirituality and/or prayer, I think that both can be healing. Becoming a more spiritual person was part of my healing journey.

      I hope that those things help!

      Hugs,
      Lisa

  16. Julia Bjerre April 27, 2015 at 3:37 pm Reply

    Thank you so much Lisa for your story and link to the Wahl protocol but also for taking the time to answer questions and educate others. My sister and I both have Lyme disease and she unknowingly took 180 Cipro pills. The Dr never warned us this could cause problems and as we have a herxing reaction to antibiotics, it was easy to confuse the herxing with the Cipro damage. She is bedridden now and in great pain however the symptom that bothers her the most are pseudo auditory hallucinations… pseudo as she is no schizophrenic and hears noises inside her head not outside is No one is telling her to get a knife (I hope 🙂 ) but she hears loud jackhammers, gongs, music, screaming, …a variety of mostly unpleasant noises, at least 5 at a time competing for attention. Have you heard of anyone else with this and if aso,, how did they get rid of it???? Thanks for any help you can give us.

  17. Julia Bjerre April 27, 2015 at 3:47 pm Reply

    Oops some how my first post copied and posted again, sorry! Thanks so much Lisa for taking the time to write out all those wonderful suggestions and links; I know we will find some very important and useful info in them. Thanks for all you are doing 🙂

  18. Shawna Cochran May 4, 2015 at 5:14 pm Reply

    I took cipro in 2012 for a UTI and two weeks later was at work and my right arm went numb and I’ve been battling with severe burning and nerve pain down both arms and hands for two and a half years now as of just a few weeks ago now I have nerve pain. Going down my legs as well we have battled trying to find the reason why I’m having this nerve issue on top of it I’ve been diagnosed with severe adrenal insufficiency and major thyroid issues starting to think that there is a link to this cipro.

  19. […] Renee’s Story – Cipro Reaction […]

  20. Lucy Sky November 15, 2015 at 6:48 pm Reply

    Sorry I cannot access Dr Wahls video/talk. What shall I do.

  21. sophie March 19, 2016 at 3:49 am Reply

    Hello!
    I m 31 years old and I m into all that. It s been seven months. I have recently developped a severe ankle arthritis and had to have a punction done. My ankle is still very painful. Has anybody gone through arthritis ? Swallowed and red articulation? I notice that Renee talks about hands arthritis. What can I do? Thanks a lot for helping me.
    Sophie

  22. Kelly June 13, 2016 at 6:49 pm Reply

    Thanks for sharing Renee. The stories of healing are the only things that pull me out of the downward internet spiral. All the info that I have found online has been incredibly helpful, but I become so hopeless too. So happy to hear that you have healed. If you – or anyone for that matter – has found a magnesium supplement that works, please share what you take. I am overwhelmed with the options and not sure if I’m wasting precious time with the wrong supplements. Of course it would be outstanding to find a doctor who could assist, but as all Floxies know, that’s easier said than done.

    Finally, thank you Lisa. Thanks you a million times over. I can’t imagine how difficult it must be to keep up with all these horribly sad stories, but you are so committed and you’ve created a place for us to turn to. I can’t overstate the value of that. Thank you.

    I am new to all of this. I still struggle to believe it’s real, how can this be happening and what does it mean for our futures? But I gotta believe we’ll find a way to fix it. And this group will be essential to that.

    • Erin June 25, 2016 at 1:04 am Reply

      Hi Kelly, I was floxed about 5 weeks ago and it’s still an ongoing battle so I get where you are and how scary this is. It’s been pretty surreal considering I’m only 16 but I’m hoping my age will help me recover faster. About the magnesium, I have been taking magnesium glycinate and it helps so so much with the pain in my ankles,feet, and achilles tendons in both legs. The magnesium has made it so I can walk most days without pain. Magnesium glycinate is a form of magnesium that is absorbed better by the body. Magnesium threonate, and magnesium citrate are also more readily absorbed. If you really want to see all your options you can google best absorbed magnesium, there are a few. I read that magnesium glycinate is the best for pain, thats why I chose glycinate. The only problem for me though is that I still have had gastrointestinal issues from it, I guess I’m very sensitive right now because magnesium glycinate isn’t supposed to do that. You could also look into transdermal magnesium, and angstrom magnesium. I hope you start to feel better. 🙂

  23. Charlene November 6, 2016 at 9:45 pm Reply

    I was floxed but thank god I realized quickly and stopped after 3 pills. All my symptoms were classic but the muscle pain was the worst for me. Thank god I had a great doctor who came to the same treatment option, Glutathione IV treatments for 6 weeks. 1ml mixed in an IV bag that lasted 20 mins. As far as I can tell I have no residual effects. I believe that most doctors would never bring up treatment with glutiathione because it is an alternative type of treatment or for insurance reasons but u have to insist. It really will help and it certainly can’t hurt.

    • Emily December 31, 2016 at 7:15 pm Reply

      I was wondering how you are fairing after the IV treatments. I was floxed by ONE Levaquin pill, but like you, I quickly realized something wasn’t right. Also like you, the worst pain is in my joints and muscles, most notably my knees. I have found a local doctor that will order the Glutathione IV treatments, but I didn’t want to pay for them if they ultimately don’t work very well. I also have low blood pressure which concerns me about the treatment. Thoughts?

  24. Debra February 23, 2017 at 5:28 pm Reply

    Three years out this month. In what seems to be the worst flare up yet. Feel so down. I’ll be 62… maybe age will be a problem for healing? Sorry to sound so negative!! Any ideas?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: