Nikki’s 3 Year Update

July 2013. My 3 year update.

Where to begin? Well, for starters, my life is unrecognizable. Unrecognizable to 2010 when I was laying in bed hoping for death, and even recognizable to before Cipro, when I thought my life was “fine”. Not to say that everything is perfect or “fine” now, it isn’t. I still struggle with health issues in varying degrees (I will elaborate on that in a minute) and I am still learning and advancing through this process of “recovery”, or, as I think of it now, my process of “awakening”. The onset of FQ toxicity was just the beginning of a journey that I am sure to be on for the rest of my life. For those of you still in the early phases, that may sound scary, but to those of you who’ve taken this journey with me, you know that what I speak of is nothing to fear. The only thing to fear, is fear itself. This is a life altering experience and if you allow it to become so for you, it will bring you to a place of total transformation and beauty.

Now that might all sound fine and good, or it might sound very confusing, but I know that most of you want to know about my physical condition above all else. Especially for those of you in the first year, this is a very physical experience and you are likely fixated on the physical (including psychological) impacts of fluoroquinolone toxicity. I want to be supportive to you all, which is why I created this site, so I will indulge you and start with the current status of my physical health.

Generally speaking my health is good. It would be challenging for a regular doctor to find anything “wrong” with me. My blood work all tests “normal”, my reflexes are good, my strength and flexibility is good, my stamina is good, my diet is good, etc. My mobility is good MOST of the time, depending on my neuropathy symptoms, which are dependent on the severity of my currently implemented detoxification procedures. My range of motion is about 95% in arms and legs. And the crazy, panic, fear, anxiety syndrome is a thing of the past with the exception of when I intentionally detoxify my body of stored emotional pain. My eyesight continues to deteriorate slowly, and I am told this is normal for my age (of course I would blame Cipro since I never had vision issues before the Cipro, but because of my age of 42 it is hard to deny that age could be playing a role here) and I do take comfort that the crazy visual phenomenon is gone and the focusing issues have improved. I still struggle with a leaky gut (poor nutritional absorption) and I have detected a kidney deficiency. The stress has caused continued hair loss (generalized thinning), but my skin, hair and nails all look healthy. And while this general overview of my health will satisfy some, I will take a few minutes to elaborate on the mobility issues and my journey with detoxifying.

When I first rise in the morning is when I notice that I am not “normal”. The first 10-15 steps I take in the morning are awkward because there is little to no flex in my ankles. It is as if the Achilles are asleep. But after a few paces, it all wakes up and functions normally and most days I do not notice abnormality for the rest of the day. The exceptions occur under two circumstances. One circumstance is when I “overdo” it, which for me means either too much mobility or not enough. If I stand still for a long period of time or spend all day on my feet, I will notice discomfort either in my feet, ankles, or heels. Alternately, if I am not active enough, such as with the use of a treadmill or stationary bike for at least 30 minutes a day, I will commonly suffer poor lymphatic movement and the result is the same: discomfort in my feet, ankles or heels. When this discomfort occurs, I elevate my feet, hydrate with oxygenated water, apply a certain combination of essential oils, and try to go to bed early. I will usually rise the next day and be back to my “new normal”. However, if I am actively detoxifying my body through the use of herbs, diet, etc, then I may feel particularly sensitive in the feet, ankles or heels through the duration of any detox program. Therefore, detox is still a big issue for me and I still struggle to find just the right pace with my detoxifications. I am a fast a furious kind of person, not a slow and steady mover by nature, so this is a constant challenge for me. I continue to rise to the challenge however, and have learned to appreciate this experience as an opportunity to overcome the personal challenge of learning to slow down.

As for my upper body, range of motion in the left shoulder was long ago restored although there is still a lot of scar tissue in there, and range of motion is slowly coming back in my right shoulder. The scar tissue has been a bear to deal with and requires manipulation by a chiropractor or body worker to loosen it up. And every time I break up some scar tissue, I release more toxins and run the risk of detoxifying too fast, which can lead to mobility setbacks. So, I have had to move slowly through this process, just breaking up a little scar tissue every one or two months. With each session, I find that I gain a little more motion and at this point I have released any fears that I will never heal my right shoulder. I can see that although it is a slow process, it is still progressing in the right direction and I am almost there. Plus, to be honest, if I never regain 100% range of motion, I have enough now that I will be okay to do 90% of the activities I desire. Considering where I have been, I cannot tell you how grateful I am to be able to use my arms as well as I can.

I’m sure there are lots of little details I am leaving out, but I can assure you that it is not intentional. I have tried so many remedies, modalities, techniques, supplements and diets I can’t possibly list them all here and it is a lot to keep track of when you are not journaling every day. I have started to write articles about several things that I have tried that have proven to be beneficial. I just need to find the time to finish those articles.

My life has become very busy. With better health has come more activity. My family life has become very active again, including socializing, family events, sport clubs, school activities, many camping trips and short vacations. Also, I work a lot. My healing practice has taken off so fast I can hardly keep up. In fact, I have had to deliberately reduce my hours and take firm control of my schedule to be sure I’m leaving enough time for my own personal care. Through the journey of healing my own body, I have become more deeply attuned to the physical and non physical components of illness and disease which has had an almost unbelievable impact on my own abilities as a healer. With my newly developed skills and insights, my clientele has been experiencing rapid recovery from their own conditions and the referrals keep rolling in. Of course, I am so grateful to have experienced this level of success, and this is just one of the many “gifts” my illness has brought to my life.

On a spiritual level things just keep getting better for me. I have deepened my faith and enhanced my relationships to my Angels, Guides, and God. My spiritual connectedness gets stronger and the light shines brighter with each day that passes. I am so grateful.

On an emotional level, I have only just begun to dig into the darkness and shed some light on the emotional impact this illness has taken on me and my family. To be honest, the prospect of doing this work has been extremely intimidating. No one likes to be uncomfortable, and feeling emotional discomfort is something I think we are programmed to avoid in most cases. I am no exception. I was raised to judge certain emotions as signs of weakness or as ugly. So processing sadness, anger, shame, guilt, and FEAR have been very challenging for me and I have expended a lot of energy putting this task off for another day. Well, that day has come and I am in the thick of it now. It is often very uncomfortable, but oh so very necessary for me to round out my healing experience. The benefits of doing this work are numerable. More courage. More strength. More resiliency. More clarity. More insight. More JOY. More gratitude. More compassion. And MORE LOVE. And while I am still learning to maneuver my way into the deeper/older emotions, the ones stored in my tendons, muscles, blood, organs, tissue and bones, I am finding that every second I spend TRYING to accomplish something in this realm is a second filled with success. Every drop of time I have invested here has paid off in spades. When you are ready, I encourage you to dip your toe into this well of opportunity.

Well, my family has just returned home from a birthday party and my “me” time has come to an end. I am sure there is much more to share, and I realize this is probably one of the less articulate articles I have written for this website, but I’m not sure it can be helped. Finding a 30 minute chunk of time to sit down and formulate my thoughts has been difficult, and I’m afraid that finding another 30 minutes for editing will be impossible in the near future. So please forgive this poorly organized and unedited addition to my website. Hopefully it will serve its purpose as a quick update and if you have any questions specific to my current condition, please feel free to post them on this page. Many thanks to you all, your loving support has always carried my soul and lifted my spirits. I hope you are all keeping up your own faith that you will recover and that your lives will heal.

Many blessings to you all,
Nikki

70 thoughts on “Nikki’s 3 Year Update

  1. hi niki. glad to hear of your progress. I too have made significant improvements over the last 3 and a half years . still stiff calves and right hand . pain in right ankle. but much improvement over the devastation of cipro . hopefully we’ll both keep improving . I believe we will . take care . norm

    • Jonas, I do not know how many I did, but I believe I did around 10 of each. I’m sorry the response was so delayed. Somehow the notification settings on the site have changed, probably with the last update.

  2. Hi Nikki thanks for your update. I was floxed 2 months ago and was at panic stations for a good month, however I’ve stumbled upon a product that i feel can hugely benefit everyone who has been floxed and i want to post it on the Survival stories part of the website, tell my story and how I am in the process of recovery. Can you tell me how to write on that forum? I cant see a way to do it!!

    Thanks,

    Scott

  3. Dear Nikki, thank you very much for your up date. I am 19 months out since the last pill from hell, and I, too, have been improving. Overall, I am in a much better state of health than I was. I have noticed progressive, yet bumpy, physical improvemnts. I have less pain in my hands and ankles. I can walk and stand more than I could merely 4 months ago. I am not physically normal, but I am heading towards normal. My biggest challenges are the on going ringging in my ears which have been going on continuously since 1/13. I notice the ringging mainly when I am in a quite environment and at nights when I lay down. I have a funny buzzing sensation mainly in the soles of my feet, but i notice it everywhere. Intermittently, I notice changes in my stool color to yellow and food appears undigested. Nevertheless, with all these remaining symptoms, I am living a normal mental life, though limited by my physical activity. i still can’t play soccer, but I have been going to the gym to ride the stationary bike, lift weights (~10 pounds for bicepts and tricepts; in comparison prior to this poisoning I used to lift 55 pounds for bicepts and up to 100 pounds for tricepts). I swim laps around the pool.

    The most appreciated improvements have been my sleep pattern going back to almost normal. I can stand for hours ( I flew a model plane for 3 hours over the weekend), I have no to minimal mental symptoms (anxiety, depression, fear, etc.) for the last 7 months. I have been able to drive hundreds of miles, when only 10 months ago I could drive no more than 20-30 miles and with great difficulty in the first few months of this poisoning.

  4. Thank you so much for posting this, Nikki.

    There are too few words of improvement, healing or healthy outcomes from being floxxied, and thus, there appears to be little hope. But your account above is filled with hope, as are the 2 comments above. Life, for me, will never be exactly as it was before the levoquin poisoning I experienced, but the life I have now is so much deeper, richer, and fuller.

    I was floxxied in ’04 – but it wasn’t until 2012 that I understood what in the hell had happened. I was one of those whose symptoms arose months later. Out of the blue. My symptoms were of the neurological/psychological. I had what I call a ‘Terror Disorder’, because the word ‘anxiety’ was too mild a word for what I experienced. And I have had ‘the sleep disorder from hell”, that many sleeping pills did not work on. Currently, I am sleeping without any aids, 95% of the time, and the terror I lived in for 3 years appears to be permanently behind me.

    So, for any who may read these words that are newly poisoned by these drugs, I hope you take heart. Because these drugs effect so many systems within the body, there is no One treatment, or protocol, and because there is a denial around how toxic these drugs are, and how irresponsibly they have been willy nilly handed out like candy, I suspect there is little inquiry by the manufacturers or the medical establishment into how to fix what they broke in us. That being said, there is life after floxxies… It is not the life one had before, but for me, and apparently for Nikki as well, it is a life that is deeper, richer, fuller, and more meaningful. It is a life of more discipline and caring for oneself. It is a life requiring more patience, more courage, more compassion. And it is a life of deeper connection- to those we love, to our own bodies, and to all the aspects that make up a life and give it the colors and hues of meaning.

    Thank you again for your words, and for giving me the space to share mine.

  5. Hi Nikki,
    I took Cipro 3 years ago now, and am wondering what doctor I should contact? I have a huge list sigh, the worst is the brain fog and fatigue, well along with the muscle loss. I need help but all my tests come back fine, scowly face….. So my general dr thinks I am nuts. I react A LOT to foods and allergies and meds now, so I am baby stepping but hoping you may have an idea? I understand this is a permanent lifelong keep-ontop-of-this issue, but any pointers would be great.

      • Exactly, an answer to this question would be so helpful! Isn’t this what the site was created for HELPING people. Yet these specific kinds of question never seem to be answered by anyone!

      • Laura, while I do my best to keep the site updated, there is much work to be done and very little time to do it. I am a one woman show here, doing my best. I am sorry that I don’t have more time and money and support for this site and despite you commentary, yes, I did create this site to be helpful, I am sorry it does not appear that way to you.

      • I am the father of a daughter that was poisoned by cipro. We worked with Dr. Mueller for several months and could get no relief from the pain caused by nerve damage. We have gone the course, everything there is to try but still the pain is horrible. Does ANYONE know of ANY practitioner any where in the world or any remedy otherwise that can deal with the pain caused by cipro related nerve damage? If anyone has a suggestion please email me at ken@kensspace.com . ANY help would be eternally appreciated

  6. Hi. I am very new to all of this. I don’t know where to start. I have been all over the web, and I am feeling very overwhelmed. So many possible solutions and supplements or other things mentioned that are like a foreign language to me. I am terrified. TERRIFIED of what could happen to me. I am even sitting here wondering if I am going to die. I had a UTI last week and was prescribed Cipro, 500 mg 2x daily for 3 days. After the very first pill, I started to feel like I was burning all over and I hurt in my joints and all over. I called my PCP and they told me that was not from the Cipro and to keep taking it. So I did. The day AFTER I stopped this, I developed tendon pain in both legs and some in my right elbow. Things have gotten worse from there. I have experienced a really horrible attack of my liver/gallbladder or something. My doctor took blood work and has ordered a CT scan. The tendon pain has spread to my wrists, and just tonight to my jaw! My neck is creaking too. It has been one week since I stopped the medicine. I saw on the website to contact an NMD right away. What is an NMD and how can I find one? How will I know if they even know anything about Cipro toxicity and what to give me? I was having health issues before this, including a suspected immune disorder that had not been diagnosed yet (was still in the middle of being evaluated for that), and I have multiple allergies that manifest as angioedema. I am very reluctant to take anything from anyone after this for fear that I will have a reaction and make things worse. I have had reactions this week from trying magnesium citrate and Vit D!!!! Does this always just get worse and worse and never go away? Do some people get better? I know you don’t have all the answers, but I’m looking for some hope. I have missed a few days of work this week and I have to go tomorrow – a 40 min drive. I just have to. I hope I make it. I’m sorry to be rambling, but I feel totally alone and this is the first place on the web where I have found anything that looks close to being hopeful. I feel like I’m in the twilight zone.

    • I’m 1.5 years in. Here’s my advice for you. find a compassionate Integrative Doc, one near you if possible. The sooner you start a program of infusions of high doses vitamin C, magnesium, and B complex and glutathione pushes the better., You probably need ALA infusions as well. I like the infusion because my GI tract couldn’t handle the amount to supplements I was taking!. Get your gut cleaned out of toxins the better off you’ll be. Also take large doses of magnesium, not the cheap stuff, get it chelated form I like BioCitrate from Solaray or ReMag which is a liquid form. It tastes like crap but I can take it easier in large doses. You need to be taking at least 600mg TWICE a day. Start taking ALA by mouth until you find an Integrative doc!

      I don’t know all of your symptoms so I don’t know if you suffer from fatigue or not. I’m on B12 shots that have helped with energy and the tingling that HURTS like being stung all over by little fire ants. For me it saclike the stinging and burning was hitting me from the inside, You body is also going to react to the physical and emotional stress you are under, in not a good way. I now have major CNS (Central Nervous System) problems that cause major sleep disturbances. I haven’t had a truly refreshing night’s sleep since Jan 2012! If your body does not get a good night’s sleep it can’t heal itself. Feel free to ask me questions and I will respond when I check back here, I know exactly how you feel at this point. I totally freaked out when I realized what happened to me. 6 pills was what it took to change my life forever. You’ll never forget what happened to you. You’ll probably lose some friend because they either won’t believe you, or they will get tired of you not feeling well, It’s maddening.

      I’m better now, I can drive now even for distances of up to 2.5 hrs. I’m still in constant pain, worse at night! I waited too long screwing around with neurologists who refused to think cipro could do this, my general doctor didn’t believer me and I wasted too much time trying to convince him it was the Cipro. My rheumy didn’t believe me because I didn’t rupture a tendon I just had horrible tendon pain in my hands, wrists, feet, neck, knees and elbows.

      Cymbalta has helped me with the pain and Lyrica has helped me with the all over pain and nerve pain. I’m not saying it will help you, it has helped me along with the integrative docs plan for me. I hsve a real hard time with the Gluten free diet, it’s boring so eventually I’ll “cheat:,lol!

      Also get on a REALLY good probiotic, not the cheap ones from CVS and take digestive enzymes. Get a probiotic with preboitics included.

      You life will never be the same but if you aren’t in a wheel chair or on crutches right now you can get better. Probably not overnight. The real lucky people can get better in 3-6 months but that’s not the norm. I spent a lot of time being pissed off. I’m still pissed off in some ways. ow I’m pissed off when I can’t do what I could do before in the gym with my trainer. but see here’s the good part…I couldn’t go to the gym for over a year. Now I’m working out again with my trainer. I hurts like heck for days afterwards, I feel like I’ve been hit by a freight train for 2 days afterward, but I hurt when I did nothing and being in the gym makes me happy. I’m on a high for the rest of the day after working out, fully knowing how I will feel the next day when I wake up. And of course I’m not doing what I could do before. I had to work with a physical therapist for 6 months and that was so painful!

      And yep I was overwhelmed with all the info I read on the web. And I was suicidal because my CNS was fried and I was in so much pain and then reading what happened to others it was more than I could bear!

      I had my cartilage eaten out of my joints, the neck is in constant non stopping pain. suffered from muscle damage, tendon damage, then the second round of side effects hit at the month mark. Ringing in the ears, vein damage, floaters and cobwebs in my eyes, both permanent. My jaw joints went out and now I have TMJ, just lovely-NOT!

      I also get some relief from acupuncture. you have to find one that well LISTEN to what you have to say about your pain. I will tell my acupuncturist about Cipro and the fact that I’ve been “labeled” with fibromyalgia by my mainstream docs. the symptoms of Cipro toxicity mimic Fibro so I often have to approach finding treatment that way.

      I finally goy my neurologist to do xrays-had to brow beat him for months to have xrays done of the areas Cipro hit me the hardest: hands feet, knees, ankles, neck. sure enough I had OA in ALL of those places. NONE of those places bothered me before Cipro, not even one!

      Ok I’ve written too much and my wrists hurt now from typing!

      I really hope this has helped you even if in a small way. I’ve been in your shoes.

      I’ll never be the same person I’m just trying to get close.

      • I hope you are wrong about being in a wheelchair and getting better. I am 4 months in and have been in a wheelchair for much of the 4 months. MRI on my knee shows no tendon tears or ruptures but there is still considerable pain and disfunction. I need some kind of hope.

      • I had the same symptoms for much of the time. I am still recovering 3 years out, but only minor pains. My right leg just did not want to work in the beginning and my knees hurt and my joints. MRIs showed no tears, etc. So that was a HUGE blessing. What happens is when your peripheral nerves are misfiring from toxicity, they don’t support the surrounding muscles very well. Weak muscles don’t support your joints and put a lot of pressure on them, this is where the joint pain comes from. I never actually had any tendon issues, just the nerves burning near them (ankles, elbows, wrists, biceps, etc.) Felt like swollen tendons, but there was never any swelling, which is why my doctors thought I was crazy. Big relief came after my achilles MRI that showed no tearing or anything. Its funny, I started using WSN Nerve Support Formula to heal my nerves, and the joint pain and everything cleared up with the nerve relief. Nerve Support won’t heal tendons, which also proves that there is no tendon damage. Nerves conduct better, muscles strengthen, and BOOM no joint pain. I also take lots of fish oil, magnesium and vitamin C. Basically, this is a wake up call for you to start a very healthy lifestyle. My naturopathic doctor has me on the following: (not meant to be an Apex ad either, but its what works for me)– Nitric Balance K68 [this supports blood flow and nerve health], Brain-E DHA K65, this supports the myelin sheath (outter coating of your nerves), Methyl-SP K14 and the WSN. This, in addition to healthy lifestyle, has given me my life back. This, and faith, hope and love (they go a long way). PS- I work out again, go hiking, ride bikes and almost back to normal. If this was as far as I get it’d be fine 🙂

      • Thanks Austin for the post. I believe I have floxy. Where do you live and who is your naturopathic doctor? I am just beginning my journey and need to find a trusted practitioner.

      • Hey Hawk, my doctor is Joe Viggianelli in Carlsbad, CA. He’s great! If you don’t live near there you can find those products online. He also does Graston work on me, bascially breaks up scar tissue and frees up tight muscles. A huge help, I found 3 days after I wrote the above is Trigger Point Therapy by Clair Davies, this will help with pain tremedously. Also man, have faith. It gets better. Romans 8:28 is one of my favorite bible verses, God makes this all work out. It gets better.

        Give some thought to the above supplements and let me know how you feel! Sorry for getting back to you so late.

        B12, Magnesium, Glutathione, no sugar/alcohol, organic meats and gluten and dairy free are the basics

      • I am sorry, yes people who are bedridden and in wheel chairs can get better. I hope you have. Never give up!!!

        Laura

    • Gen,
      Have you found some of the answers you were looking for? If not, I can maybe offer some. I too was in your position. I in fact did hurt my knee squatting down in the first week if this ordeal and it is still weak.
      Hang in there.
      NMD- Basically a Naturopathic Doctor. I am doing Myers, Glutathione and H2O2 IV’s
      You want to take Chelated Magnesium or Ionic (Angstrom) Magnesium (They are absorbed better)
      Eat as healthy as you can… Organic meats and vegetables and purified water as antibiotics and pesticides can be found in most non organic meats and tap water.
      Hope this helps.

  7. Hey guys,

    This will be a short 2 1/2 year update (maybe not). I took about 3,000mg (3 days worth of Cipro back in February 2011). Like Nikki, I too longed for death. I used to pray for it every night for 6 months. My legs would get heavy and numb and burn, as would my arms and just about every inch of my body. I would shake/tremor while laying in bed at night and could not sleep with sheets over my feet because they hurt so bad. I lost about 30 lbs and looked anorexic. No job would hire me, no girl would date me and my self confidence as you may have guessed was at an all-time low. I contemplated suicide more times that I want to remember and almost bought a one-way ticket to end it all on the beach in Hawaii. I wasn’t living, just merely surviving. There’s a lot more details, but I can’t stay here long. As you can imagine, life was complete hell for many months. I would lay in bed dreaming of Hawaii, one of my “Heaven’s on earth” and also Bass Lake. I used to hike the Falls there as a child. I would pray that someday God would allow me to walk on the beach again (not easy to do with heavy/burning legs) and pray that I would be able to hike the Falls. I noticed my symptoms getting better sometime around September of 2011, or 7 months later (but with the presence of the cycling “5 steps forward, 4 back”.) I just want to tell you that it gets better. I walked on the beach for the first time a couple months ago, the sand between my toes was the most incredible feeling. I have swam in the ocean. Yesterday, I returned from a trip up to Bass Lake. I hiked the falls again. Swam under water falls. Breathed in the fresh air. I broke into tears writing this. On July 17th of this year, I was nominated for an MTV Video Music Award (didn’t win but who cares right?). I go on Missions Trips with my church to Mexico. I have taken, whom I see as the most beautiful girl in the world, to dinner (met her at church). I walk 5 miles a day. I can walk up the steps in the theater for the “good seats”. I have gained about 15 lbs back and still making progress. I turned 27 on August 19th, and I must say that I have seen a lot in my short time here on earth. If you want to stalk me my Instagram name is austin_ruiz (if maybe for some hope as to where you will be someday).

    I am still healing. My feet flare up occasionally, but leg gets weak but hardly noticeable anymore (lasts for minutes not days) I had a minor set back in October 2012 (I drank a bottle of wine in Vegas). This made the nerve symptoms flare up and my legs get weak again. I do not drink anymore. Not worth it. I eat only organic meat. No dairy and no gluten. I don’t drink concentrated fruit juices as the sugar aggravates my nerves (try to minimize my sugar intake). I take a product for my neuropathy called ‘WSN Nerve Support Formula” and besides detox, this has been the best supplement for me. It’s food form B12 that directly helps your nerves.

    I know you don’t see it, but this experience will have good side effects. You will appreciate everything God puts in front of you. Take nothing for granted. God is real. You will get better. Stay the course.

    Best,
    Austin

    Romans 8:31 “If God is for us, who can be against us?

    • It has been almost a year, my symptoms can be found in “your survival story”, press ctrol + F and type “kh jin”.
      I took almost no supplement but had vegan diet (+ no flour, no dairy) and I used the Urine therapy (drinking + massage on skins, hair, eye and a few drops in ears). I have read 10+ books and testimonials of urine therapy and that made me think ‘ worth to try’. If any of you want to talk about this, you can email me @ jinp92@daum.net , I have recieved too much help from this site.

      Most of my symptoms are improving . Sleep better, less pain,ear ringing ok, muscle twitching almost good, sight better, depression amost ok, panic gone _I was crying everyday for the first few months, dryness of eyes are almost ok, dizziness are getting better.digestion better . I have lost 50lb, do not know if I can gain if I eat everyting as I had before flox , but want to remain vegan keep feeling energetic.

      My current challenges are 1. shortness of breath ( slightly getting better), 2, atrophy on left quadriceps which was most painful 3. dryness of mouth ( sometimes suffocating/ a few hours a day) 4. cold hand especially right one ( cold in AM, and warmer in PM, strange)
      Most symptoms are similar to autoimmune disorder, but I don’t want to see a doctor, because they are good at naming a disease but they don have any cure. They have only something to sell for their income. they live on the fear of patients. Some might be good but I gave up finding ’em.
      see “forbidden cures of cancers” in youtube and don’t be a victim. You would expect much less on FDA if you see this video. Do not follow what doctors tell you to do, follow what they do.

      I believe our body has a powerful auto healing ability if we do not put bad things in the body.
      Bad things are drug, artificial food and ingredients, refined food, dairy food, factory raised meat…and negative thoughts. We will get better!!
      Human and Human-raised animals have more diseases because they are way off from natural food and life.

      Thank you Nikki for your story and this site and Thank you Joanne and Rene for everything.

  8. Read your story on Cipro. Horrifying. Simply horrifying. Here is my story.
    Picked up Lyme disease in 2009. Diagnosed in the Fall.
    Took Doxycycline for four months. Amoxicillin for four. At the same time my
    Chinese MD who also treated patients with herbal medicine was concerned
    they were damaging my kidneys and liver. Kidneys affect the bones and tendons
    and the life force vital energy. So I stopped taking them. During the time, I was taking
    these antibiotics Dr. Wong gave me herbs to prevent damage to my organs. I should
    have been more prepared when Cipro came along.

    Lyme came back six months latter. Had sharp stabbing pain in right shoulder.
    Got on a gluten free, sugar free diet. Various supplements from nutritionist knowdeable about Lyme. She introduced me to a doctor who put me on one month of Zithromax and Flagyl. Symptoms
    abated. Six months latter symptoms came back.

    Called Dr. Zhang, who wrote a book on recovering from Lyme with Chinese herbs in New York,
    and went on his protocol for eight months all herbs. Stopped protocol in December of 2011.
    Was back at the gym and running on treadmill feeling about 80%.

    Here is where our paths cross. Went to cousins wedding a few days after two root canals. They
    suck. All dental work sucks. I was taking advil and another antibiotic. I get home and go to pee and blood comes out with urine. Under wife’s insurance go to Emergency clinic. Testicals swelled up like beach balls. Urologist put me on CIPRO.

    Very severe reaction almost immediately. Ten days of Cipro. Legs hurt. Testicals still swollen
    like beach balls. Weird feeling in my heart. Extreme fatigue. So frightened I went to the Lawyer
    t o put my wife’s name on my will. Doctor wanted me to take ten more days of CIPRO. I said,
    NO FUCKING WAY. Told him what the stuff did. No way he said. I Said,
    Your full of shit and I threw the prescription on the floor. Fixed it in a couple days with D-mannose, a simple sugar. Natural medicine is best. But now had an irregular heart beat, extreme fatigue, and many other problems.

    I was very very frightened. My cousin’s wife is a cardiologist in Burlington, MA. Saw her,
    she said, Steve, wow, you have a serious heart condition, and will have to be on medication
    the rest of your life. Strong medication. Well, I said, you know, I have always been Mr. Natural
    and I was able to cure the UTI with D-Mannose and it worked in just three days. Three weeks ago
    I was running 12 minute miles for four miles and within three months I will be doing better than that.

    I called five different kinds of holistic practitioners and saw them all in three days. Four of them were
    full of shit and didn’t know what they were doing. It was obvious to me. But one was for real. I walked into the D”Adamo clinic (inventor of the blood type diet, his son Peter, wrote the book Eat Right for YOur Type) in Portsmouth, NH and saw Dr. Medrek and his colleague. They didn’t wantt o know anything about my history and be biased in their assessment of what was wrong with me.

    They tested me for my blood type and sub-bloodtype. Medrek is a naturopath who was choosen as
    Clinician of the year when in Toronto by the Alternative Medical Community in Canada. They did a Chinese pulse diagnosis and then a specialized form of Iridology looking into my eyes with some kind of device.Then they talked for an hour or so and came back to see me. Well, said, Dr. Medrek, I am sure your cardiologist has told you you will need to be on very complicated heart medications for ever….. but I think we can fix this. What? You know about the heart. My story poured out. I TRUSTED THEM right away.

    Long story short. With his help and a little detective work of my own. I am mostly free of Lyme and the fatigue is gone as long as I eat the diet and take the supplements he gave me. Five days ago I went to walk up Mount Wachusett and ended up running up and down the mountain. THe next day I went for a 20 mile bike ride through hilling Princeton MA (I hadn’t been able to bike more than three of four miles on flat terran since the CIPRO) area up some steep hills, then the next day I went for a swim in a pond (a little chilly) for 40 minutes. Then I went to the LIfe is Good concert on Saturday and danced and listened to music, (Hall and Oats, etc…) mostly on my feet from 1PM until 11:30 at night. At the concert I got off my diet and was very tired on Sunday. A couple days to feel normal again. Today, I hiked up Mt. Monadnock. I found my way back from CIPRO hell. Maybe you can too. Fatigue is gone. Heart irregularity is normal now. Other symptoms abating flexibility coming back. Will start doing Yoga again and taking Kung Fu lessons. Life is good again.

    Steve

  9. PS: I forgot to mention the other things that happened to me. After taking CIPRO I had constant diareah for three months. I was normal weight previous but lost almost 20 pounds. Weird feelings in my feet and tendons in my leg. Dr. Medrek treated me for ulcerative colitis, the irregular heatbeat, kidney and adrenal weakness, hypoglycemia, leaky gut, poor assimilation. I was a mess. It took about three months to start to feel better, after seeing him in mid-Feb 2013 and now in September I feel pretty close to normal if I stay on the diet, supplements, herbs, and other things. I did hyperbaric oxygen treatments in a clinic, german footbaths to detoxify, took charcoal when I woke up in the middle of the night to detoxify heavy metals, got specialized accupuncture treatments from Dr. Medrek.

    One thing that helped a lot after the diet got things under control was Aloha Medicinals 1kilogram supplements of Cordyceps and Lions Mane. Cordceps to rebuild adrenal and kidney function among other things, and Lions Mane to fix nerve damage and repair and grow neurons since they contain Nerve Growth Factor. Those two pushed me all the way back to normal. Thank you GOD!

    Hope you find your way all the way back too, Nikki.

    Steve

    • I was floxed by cipro, only one 250mg dose, on 8/20/2015. I am 3+ weeks out, and most of the worst sxs had passed. I started going to a Chinese acupuncturist who would also do acupressure afterwards–it has helped some thus far. He put me on Tibetan Cordyceps last Friday–I took one pill that night, another saturday am and then another PM. On saturday morning, my nerves began hurting again and my hands were very swollen at the base of my thumbs. I decided today that I felt re-floxed, so I looked up Cordyceps and found out it has anti-inflammatory properties which is why my sxs have increased. I think this would be a powerful med if you only had osteoarthritis, etc, but not if you’ve been poisoned by Cipro–remember anti-inflammatories and prednisone both increase sxs or cause them to reoccur. So check to make sure your Chinese herbal meds don’t have these properties.

  10. I can very much related to the standing a walking problem. It’s coming up to 3 years now for me as well and my main issue is with my feet. I can’t stand still for more than 20 minutes without pain at the bottom of both feet and much straining in the rest of my ankles and calves. Walking seems ok until I hit the 90 minutes mark by which time I’m in pain and need to sit down. The pain stops when I sit and then with an hour or so rest I can get up and do another hour or so if I need to. Similar to you, it returns to the new “normal” by the next morning. I used to get the stiffness and no flex after periods of inactivity or the first few steps in the morning but this is one sympton that seems to have resolved over the last 3 months. Maybe a sign that there is some healing going on.

    My other issues are with my shoulders, elbows and wrists which have not improved at all. All three get weak and aching when in use after a even the doing the simplest of daily tasks.

    Despite these problems I think I am coping day to day quite well and mentally I am doing fine most of the time. My biggest concern is that I’m 31 and worried that the mobility issues are going to be a problem finding someone to settle down with.

    I’m hopeful that these problems will go away with a bit more time for all of us. All the best.

  11. 24 month up date:

    Overall, I am much better. I can walk, even jog up to a 1/2 mile. My finger pains have almost resolved completely. I have no mental issues. I continue to have right lateral ankle aches, pains and intermittent burning. I have noticed cycles come and go. I am in the middle of a cycle right now (Headaches, burning lips and scalp, sleep disturbance, dry eyes and mouth, and sore lips), but I am not worried about it, since it will eventually resolve, hopefully sooner than before. Nonetheless, improvement seems to be the norm. Perhaps in another few years I will be back to normal. This is a short follow-up since I don’t have much to complain about or advice.

  12. Hi all,
    i took 2 pills of cipro. after being diagnosed with bacteria infection. It has now been 6 days after i stop taking the pills. i spent Friday at the hospital with hurting wrist, burning arms, ankles hurting, eye twitching,backache, can sit up straight in my car or comfortable on my side. when i got to the hospital i believe i had a panic attack. my muscles tensed up and my for finger cramped up in a position i never saw before so i panicked and was screaming and crying the same time. nothing was done at the hospital iv fluid, anxiety medicine,Tylenol, benedryl. Doctors not believing it could be the medicine the normal follow up with your doctor office. i am fortunate to have a natural path doctor. it is difficult to type my fingers feel like they are about to cramp up. i saw him today and as the tears flowed down my face i told him my pain. i did a treatment of uvbi and my wrist feels better. he ordered me a new protocol 2x a week uvbi. i am going for blood work in the am to see what vitamins i really should be taking currently taking magnesium, zinc, calcium,d3, alpha lipoic acid, and curcumin. when i got the treatment i felt so exhausted, i was like “woosh” what is that i guess its called die off. Im on bed rest for now. my next treatment is Thursday i am getting this out my system.

  13. Nikki (or anyone who can help), do you think we could speak about the Yuen method? I was badly floxed back on 12/20/13. I was on Cipro for 10 days (1000mg/day) for a UT. I have been affected very severely b/c I didn’t know about Cipro and went to the ER alone where they filled me full of steroids and sent me home with a med pak. My body was and is so toxic that it threw me into an immune disease that I’ve been tested for repeatedly and positively, Sjogren’s Syndrome…. it’s horrible on top of Cipro toxicity… The combo has has affected everything…. I can’t eat/digest food, my stomach hurts and is bloated 24/7, have constant heartburn and regurgitation, b/c of Sjogrens my eyes nose mouth and stomach burn, my bowels don’t move on their own, my vision is blurry and they flash light at night, it hurts to breath… lungs don’t want to expand, my throat won’t swallow properly, my back (and all other bones literally) crack and snap upon moving, my hearing is affected along with swelling an pain in my ears, horrible burning nerve pain head to toe that travels all over but has permanently affected my feet, horrible 24/7 joint and muscle pain, skin feels like needles, I can no longer sweat so any amount of heat makes me almost pass out, the cold causes horrific joint pain, I am so weak I can barely walk any distance, have not slept since 12/20/14 except maybe 1-2 hours night, the list goes on and on. Friends don’t come around, my boyfriend of 14 years left me, my family won’t come and help (or can’t), lost my job, have very limited income now. Needles to say, I am scared to death and suicidal most days. I am 4 months in and things are obviously getting worse… everything affects me.. allergies, wind, rain, foods, scents…

    I started with an acupuncturist in mid-January when I realized what had happened and that helped some but now it’s too painful. My muscles are atrophied. He tried me on some herbs that didn’t help. And otherwise I have beent to many doctors, costing thousands, without real improvement. Went to a naturopath who took my money but only gave me supps I could buy over the counter, 2 “integrative” doctors who would give me an IVs but not treat me or even look up cipro toxicity… so much for believing in their own profession. And sadly, because of my immune system, my symptoms get much worse after some of the things I Have suggested here. I was trying to get to Atlanta Progressive Medical Clinic but have no one to help me and I am unable to travel alone… been trying to get help since January when I realized what had happened! So far I have tried magnesium baths, magnesium supps, rubs of all kinds, clay detox footbath, a “health clinic here locally,” Vit C IV, oxygen IV, glutathione IV, alpha lipoic supplement, B vitamin supplement and each makes my pain so so much worse. B vitamins and oxygen IV made the nerve pain much worse for over a week… then they were numb. My butt is burning and numb 24/7 now. I have tolerated hyperbaric oxygen (100% hard mono chamber) and that is the only thing that has made it bearable… I’ve contemplated taking my own life every day since 12/20/13.

    I have no idea what to do… I have yet more appts with another “integrative doctor,” another local homeopath, I have set up a conference with Dr. Manfred Mueller, and have calls into the Atlanta Clinic, the Whitaker Clinic and Chung institute to see if theycan help. BUT, I am running out of both money and hope.

    Is there any way to recover from this if you’ve been hit with massive steroids as well and are 4 months in with little positive response?

    Thank you ALL for sharing your stories of hope… I’m sorry this was so long. (PS I live in Dallas TX)

  14. Hi all
    My story mimic’s Nikki’s pretty much word for word plus a few other things. Sore skin. It hurt to shower. Hurt to open the freezer and feel the cold air. Everything else she mentioned I went through. I just didn’t know what it was. My story started in 2010. January. I got yet another sinus infection and the usual Z pack didn’t budge it.. So then I was prescribed several other things before being given Cipro. Then Avelox and finally Levaquin. Only one of each because I instantly got severe reactions. I just didn’t know they all belonged to the same group. So slowly started to go down hill but thought it was the ongoing sinus infection..menopause looming and some stress going on in my life. Finally in May of 2010 I had sinus surgery. 10 days later all hell broke loose. Like a bomb going off in my body. I was bedridden for 4 months. Didn’t leave the house for a year except to go to the Doctors of which my husband took me and numerous trips to the ER.None of this came to anything and I was terrified. I knew I’d been poisoned. I just thought it was the Anesthesia. I only just found out 4 years later through facebook what had happened. Lightbulb moment.Because I didn’t have a clue what happened I took nothing. I just got through the day being terrified. In bed and going crazy. But baby steps. Slowly after the first year I was able to go to the mail box. Walk a block. Once in a great while make a trip to the store be it a very fast and panicked trip. I slowly started back to work. Luckily I work from home as a dog groomer. My clients stuck by me. The once 8 dogs a day I could easily manage became 1 a week and I was exhausted but getting back to some normalcy.So here I am 4 years in. I get a few flare ups once in awhile. I’m going through one at the moment and its probably the worst one. I started a workout program 2 months ago and I’m not sure if that made it worse. Like this toxin somehow stays in youre muscles and is pushed back into youre system somehow. I don’t know. Its just a theory :-). I do honestly think once floxed it’s something you live with. I don’t think it goes away. I think you have to be careful in what you do…again. Just my thinking.But I just want to tell everyone that it gets better. The first year or two seems to be the very worst. I honestly thought I would die and often just wish I would. But the body is very resilient. Don’t lose hope. A positive mind even when stretched to it’s limit goes a long way.
    I do understand Nikki not getting on much now. Life happens and after going through hell and back you just want to live it . I totally understand that. But at least she told her story and we can relate and know in time it gets better. Wether you take things to get through it or like me take nothing…you just get through it. Its frightening..terrifying.. the worst thing most of us will ever go through .But there is a light at the end of the tunnel.

  15. Hi Melinda,

    I know how you feel believe me. I was floxxed the third week in Feb 2012 and I’m only 50% better. But right now I’m having a backwards cycle. I know you don’t want to hear this but it’s going to take TIME. I didn’t want to live either. I was an active physically fit energetic person but 6 Cipro pills changed all that.

    You have to have HOPE. Please read all of my comments on the forum as well as what others say worked for them. The hardest thing to come to gripes with is that your life is forever changed..

    Sending out much love and support.

    Laura in North Carolina

  16. I have low back cracking especially when i twist or turn after taking this quinolone Avelox. What causes it. Anyone knows from his/her experience? What about neck clicking?
    I have another concern, does floroquinolones affect the cartilages of intervetrebral discs?

  17. Just stumbled on this website. I don’t know where to start. I’ve been treated for UTI’s for most of my adult life. Until the past 2-3 years, Bactrim had always done the trick. But it stopped helping and the infections were relentless and debilitating. My doctor starting prescribing me Cipro and I never really thought much about it. One time it would be 250 mg 2x a day for like 10 days, sometimes as much as 500 mg 2x a day for 10 days…..Two months ago, the infection came back again and this time he prescribed me Levaquin. Giant horse pills, one time a day for 10 days. Well, the first few days all signs of the bladder infection were gone, but then they started to return by the time I was at my last pill… A week later he prescribed me ANOTHER script for 8 days. So, in addition to the bladder infections, what made this all the more confusing to me was that I thought I was going through pain medication withdrawal. About 5 years ago I started having back pain. Had a few MRI’s was diagnosed with degenerative disc disease and a prolapse and arthritis. I was in pain management since about 2010. I was taking 120 5/325 percocets each and every month for the past 5 years. Needless to say, my body became dependant on them and the past year or so I’ve become really worried about it and have tried to quit a few times…Well, from what I’m reading here some of the Cipro side effects are almost identical to withdrawal from opiates so I NEVER put 2 and 2 together, just assuming it was from stopping the opiates. My latest attempt at stopping opiates started 6 days ago. I decided I would rather live with the back pain than what I thought the opiates were doing to me, but I have NEVER in all this time had side effects such as I’m having now and I’m truly convinced it’s from the Fluxo’s. I’m exhausted. I can’t lift my arms above my head. Taking a shirt off is almost impossible. When I wake up in the morning or move from sitting for a long period my toes and ankles are practically locked into place and it hurts to take a step. My knees crack. I can’t stand up from a sitting position anymore without some sort of support in getting up. My neck constantly spasms and twitches. This past summer during a routine eye exam, the optho made me take more tests and told me that I have one of the largest floaters he ever saw and he wanted me to come back in 6 months to have it checked again. I never went cause we lost our eye coverage, so I have no idea what is going on there…but I read somewhere that floaters could be a potential side effect? My brain is in a fog. I cry easily. The only thing I look forward to is going to sleep. My eyeballs, sinus cavity and mouth feel like they’re on fire. My anxiety is absolutely insane and I’m constantly in a panic. I worry about everything. My heart beats out of my chest. Lots of things just HURT. Even wearing a bra hurts! I’ve gone through opiate withdrawal before and normally after 3 days the worst physical symptoms are gone. This is horror! I can’t focus and the best way to describe my psyche is that I feel dead inside. I read the stories here and most people were only on these antibiotics for a few pills or just for one script. My God, I’ve been on them off and on for at least the past 2 years!! A few scripts a year! My granddaughter is the light of my life and I used to love it when she came to visit and stayed over…now I don’t even have the energy to enjoy her anymore. It breaks my heart. My sex life is nonexistant. I know many of these symptoms can be from years of opiate use but omg, i feel like I’m dealing with a double whammy. I NEVER knew the fluxos could do this to me. I really need to get some help. I have an appointment for a cysto tomorrow at the urologist to try to discover what is going on with my bladder and I’m going to talk to him about it. The WORST thing is that I have to take a Cipro tonight because you have to do it 12 hours before the procedure and I’m looking at that pill and I don’t want to put it in my body. I feel like I need a new primary doctor because my old one obviously didn’t care what he prescribed me and I’ve gone to him in the past because I couldn’t lift my arms and they would just write me off….he NEVER told me any of it could be related!! I was diagnosed with Raynaud’s about 5 years ago as well and that comes and goes. I truly believe this is all related…. I really could use some help…

  18. Took 13000mg (13 days x 2 x 500mg). everything damage and the worst no more sleeping, not even a wink, 24/7 for 5 months. Immune system, organ damage from no sleep. CNS destroyed. Now looking fwd to exit my life, its been too much dying

    • Please contact your loved ones, your doctor and the suicide prevention hotline… 1-800-273-8255. Your life is valuable. You must hang in there!Sending lots and lots of love, Nikki

  19. hi, i’m about to be one month off cipro, had one 8 day 2x250mg round, and then after a week or so another 8 days, the doctor prescribed 15, but fortunately some people told me how sick they felt while taking it, I told my doctor how I felt and stopped. I had some issues around the time I started taking cipro, so I interpreted the side effects as stress caused anxiety.

    I feel less anxiety, some mental fog, lightheaded, neck pinching, I have throat tightness after eating. I drank a veggie smoothie late yesterday, and fear woke me up 3 hours later. Better not eat after 6p.m. some back pain, gallbladder test came ok.
    Trusting my body to heal itself and helping by learning to take care of it . I want to thank you all for sharing this as it makes me feel less alone.

  20. Hi I’m currently in the middle of the 3rd month of my believed and suspected cipro poisoning. I’ve been to the ER twice for tight chest (suspected heart attack) and both times it came back negative and everything else was normal ekg/blood/vitals/xray. I don’t always have the chest pain or compressions though. This is my second episode of it and it only lasts a day or 2 then goes away or rather my poisoning goes to a different part of my body last week I went in to the ER for suspected blood clot because I could barely walk on my right leg for 2 days and the pain was slowly moving up my leg. Started in my foot and calf, not my ankle, next day it was behind my knee cap and the day I went in was in the middle of my hamstring, centralized pain not radiating. Sound familiar to any of you guys? Of course my dvt came back negative and the pain dissapeared 3 days later. I sometimes get pain in my groin scrotum area but doesn’t last long. I had twitching in my top right eye lid and in my left elbow for roughly 2 -3 weeks straight after my 3rd and final day taking my last 250 mg pill but that seems to have ended the last week or only a little blip in the eye so often… I do have eye floaters now but vision is still great first few days on cipro I had eye crustys and my tears were almost chalk like when I cried but all that went away soon as I stopped taking it. As for sleep, I sleep fairly well unless I’m having the chest flair up or what it feels like a restless leg syndrome in my left calf (one time). Now I don’t know if there are different degrees to cipro poison but I’m fairly certain I do not have it as bad as most of you do or did, I guess I am just trying to see if someone out there has it minor like I do or if everyone progresses to full fledge pain. It’s been roughly 3 months now with the worst of it behind me it seems, I can eat and drink whatever I like, have been staying away from mostly nasty processed foods and sweet beverages, I have consistant bowel movements but notice they’ve had a lot of mucus in them and some times it’s just mucus/foam that comes out (sorry for detail) I am 30 years old and a male who lives in Phoenix Arizona. Any suggestion/comments/support on anything I asked or said would be greatly appreciated. Thanks for sharing your stories and giving me the courage to share mine

    • there are many levels of toxicity but it doesn’t matter that much if you are “better” or “worse” it matters that you are altered. detox and cleanse until you start to feel like you again!

  21. Hello I am three weeks out from Cipro damage. I have had pain in my nerves and the shakes bad anxiety and all of the above. I was prescribed 500mg Cipro twice daily for 30 days for an infection. I was at work when all of a sudden I was extremely fatigued and the light in the room was extremely blinding, I thought I was going to pass out, I was shaking like crazy. I have been getting much better already by taking PQQ(for mtDNA repair), MSM(natural 99.99%, to flush out toxins and restore gut flora), magnesium calcium and zinc, natural organ vitamins(lifes fortune), Omega 3-6-9(UDO’s OILfrom nuts and seeds naturally for gut flora restoral), organic liquid vit C, selenium, L-Glutamine, COQ10, brown rice protein, and natural teas such as Kava tea from yogi. I have noticed a HUGE improvement just from these supplements and eating as much as I can plus resting a lot. I have also taken the 37% foood grade h202 two drops ONE time and immediately almost all of my symptoms ceased to exist. I could not continue to take it because it had such a powerful effect on me I couldnt sleep for about two days. I also have been meditating and reading the bible I am a strong beliver in our savior Jesus Christ and I have been praying like crazy with great results! There is a hope for us!!!! I am going to pray RIGHT NOW and I want all of you to agreed with me in prayer for the healing!!!! I pray right now that any of you who are suffering with damage to your nerves, muscles, tendons, cells, mtNDA, tissues, or microcells that in this moment you are touched by the power of the blood of Jesus who died at Calvary to SET YOU FREE in Jesus name! Romans 8 says NOTHING can serperate us from His love and I believe you will recover if you have hope and think positively!!! I am with you and praying for all of you right now!!

  22. I have taken 4 pills of Avelox 6 years ago and I still battle with some health problems though I am maintaining a normal life. The stuff that hasn’t resolved is tinnitus, joint cracking, fatigue and brain fog. I also have extreme intestinal gas. I connect all of this madness to destroyed gut flora. I have taken probiotics of every kind with little to no benefit. IF someone has healed their microbiome and can tell me how to do it, I would appreciate that. Otherwise, I am not going to take a gazillion of supplements in vain. The focus should be on the microbiome not other stuff unless you are tested and verified to be deficient.

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