I took an antibiotic called Cipro for a “suspected” kidney infection/UTI in November of 2016 and have been suffering from fluoroquinolone toxicity for over a year. I was only 30 years old. I say “suspected” because my urinalyis came back negative, as did my urine culture. I instinctively knew that I did not have a UTI because I didn’t have any of the common symptoms, I only presented with left flank and back pain. But, who was I to question a doctor? I would soon find out that not trusting my intuition was going to have catastrophic repercussions.
Before Cipro
Let’s back up and look at what was going on in my life that possibly set me up for fluoroquinoline toxicity. Five months before I took Cipro, I was in a car accident and had trauma to the left side of my body especially my rib cage and breast. I was a stay at home mom to a 7-month old that I was still nursing and a two year old. My husband worked 90 hours a week, and I didn’t have any family to help with my children as I healed from my injuries. Since I had experienced trauma and bruising to my breast, I developed chronic issues with mastitis, plugged ducts and breast pain. In attempt to keep my breast from getting infected and ducts unplugged, I nursed my son constantly throughout the day and night, every night. My body was exhausted, and I was completely run down mentally. I started having severe anxiety and panic attacks. I started drinking cappuccinos to help give me energy and keep me awake.
How does this relate to my fluoroquinolone toxicity? In the months leading up to this, I was under immense physical and mental stress that I suspect played a huge role in draining vital nutritional stores – not to mention my increased metabolic demands from lactation and two back-to-back pregnancies. People with high-energy needs, whether physical and/or mental, may be hit harder when a medication attacks mitochondrial energy.
The Downward Spiral of Being Floxed
Fast-forward to November 2016, I had been having pain in my side and back for a few days. I went to an ER clinic by my house and had a CT scan done to rule out kidney stones and other organs issues. They came to the conclusion that I had a kidney infection, and gave me a pain reliever via IV, which I thought was unnecessary, and prescribed me Cipro and Pyridium. I didn’t know anything about pharmaceuticals at the time and didn’t even recognize the name Cipro. No one mentioned any sort of warning of side effects or disclaimer about this drug at the ER or the pharmacy.
I went home and started taking the medicine. That night I could not sleep at all and thought that was strange. The next day I started having terrible burning during urination and thought, “This must be the UTI they were talking about!” It never crossed my mind that the burning could be a result of the antibiotic, so I went back to the pharmacy and got the Pyridium prescription filled.
Over the next few days, I kept feeling worse and worse. I even called the ER and asked about the results of my culture and if I should be put on a different antibiotic. They told me to just keep taking the medicine, and I would get better. I followed their instructions and continued. By the next week, I had developed severe vulvar burning. On my 10th and final day of my round of Cipro, I nearly fainted walking to the bathroom and truly felt like I was dying. I went back into the ER and told them about my severe vulvar pain and the fainting episode. The doctor performed a pelvic exam and tested me for STDs, which of course were negative. He didn’t even know the difference between the vagina and vulva, so that should have been a big red flag! He told me that his wife always gets yeast infections after taking antibiotics and wrote me a prescription for the antifungal Diflucan. I did not have a yeast infection, but out of desperation, went along with his rationale.
I went home and prayed that this medicine would help take the terrible pain away. That night, I started having strange sensations in my legs. It felt like something hot was running through my veins from the waist down. This terrified me, and I did not continue taking the remainder of the prescription. I have learned since then that antifungals like Diflucan can cause huge increases in oxidative stress.
The next few days were a total nightmare. I couldn’t eat. I couldn’t sleep. It felt like electricity was running through my body. I went back to the ER a final time and told them that something was seriously wrong with me and that it was like my body was out of control inside. The doctor asked me if I had a history of anxiety and wrote me a prescription for Xanax. I was offended and absolutely terrified. I left feeling completely and utterly alone. “This is NOT in my head,” I thought. Fortunately, I got off that medication merry-go-round and threw that Xanax prescription in the trash.
The next day I called a practitioner in my city that specializes in environmental medicine. I told him about the Cipro and my severe vulvar and urethral pain, and he brought up oxalate and told me to take calcium citrate and d mannose. I had never heard of oxalate before but was relieved that someone seemed to know how to help me and more importantly didn’t think I was crazy! It was Thanksgiving week, so I just kept telling myself if I could make it through the holiday, I would be OK once I saw the new doctor.
Contemplating Suicide: Cipro Poisoning is that Bad
By Thanksgiving Day, I was in such terrible pain physically and mentally. My ears felt full and were ringing. My eyes felt dry and irritated. I had peripheral neuropathy. My skin felt like it had been burned. My Achilles tendon and shoulder ached. It felt like someone had poured acid on my vulva and urethra. I would lie in bed an entire night with my eyes closed and not be able to fall asleep. At this point, I had gone days without sleep and could barely eat. I wrote letters to my children, emailed them to my husband and was making plans to kill myself. I certainly could not live like this and did not want my children to see their mother in this way. I emailed my new doctor (that I hadn’t met yet) and pleaded for help – keep in mind that this was Thanksgiving Day. His office wrote me back and told me that I could take dye free Benadryl up to 3 times a day for the irritation in my eyes and ears, arnica for the pain and sent a very comforting message. That was absolutely my saving grace. I definitely would have tried to kill myself if they would have not written me back. My plan became to take the Benadryl and just try sleep through this nightmare for the next few days until my appointment. I kept reminding myself, “If you can just make it to Monday…just survive until Monday.”
Monday rolled around, and I was hanging on by a thread. I limped into the doctor’s office first thing on Monday morning. I cried, no – more like bawled, for 90 minutes about how much pain I was in and how scared I was. He was incredibly comforting and compassionate. He listened, and he believed me. He told me the pain wasn’t in my head, it was real and to believe in myself. He reassured me that we would figure this out, no matter what, and that I would be OK. He gave me hope, which was the most important gift anyone could have ever given me.
The Power of Hope
I was so lucky to have a person in my corner that believed in me from the very beginning. If you are not as fortunate as I was, let this story be that for you. You will get better. You will be OK. Say it to yourself over and over and over, and truly believe it. “I’ll believe it when I see it” can be turned on it’s head into I’ll see it when I believe it. It’s not going to happen overnight, but you can find healing. The path is not linear; it has many ups, downs, and devastating setbacks. Many times, I would make huge gains and then seemingly overnight, feel like I was back to square one. Have I always made the “right” decisions? No, of course not. I have followed advice that has set me back many times. I have cried myself to sleep for weeks and weeks. I have been in so much pain that I have gotten my husband’s pistol out and held it to my head more times than I want to admit. Despite all this suffering, God has been so good to me. He has guided me on a path towards healing and has made me a better person through this experience. I no longer take my life for granted and feel as though my eyes have been opened in an incredible way. I am not completely healed, but I am living a full and happy life – and learning more and more everyday. So, what have I learned?
Surviving Fluoroquinolones
When I first started writing this, I was going to share every nitty gritty detail, but it was turning into a novel. I think people are less interested in hearing about my struggles and much more interested in learning what helped me feel better. I have experienced dozens of symptoms over the course of the last 14 months. The vulvar pain has been so severe at times that I was suicidal. I developed sensory issues with my ears that brought me to absolute despair. Everything was so unbearably loud that I had a difficult time going out in public. I would go to the grocery store and could hear a thousand different noises all around me. My heart would race, and all I wanted to do was scream and run away. It was overwhelming but made me empathize with autistic children that have complete meltdowns in public. For about 2 months, I had issues with my eyesight and couldn’t drive at night at all. For 4 months, my hair fell out in huge clumps to the point that I was scared to brush my hair or take a shower. I developed thyroid issues and was freezing cold all the time. This list goes on and on and if you want to know more, you can leave me a comment. For now, I’ll recap the things that helped me in chronological order. It’s important that I list it from the beginning to present day because of the way it led me to learn new things.
My Path to Recovery: Nutrients and Diet Matter
December 2016: The first protocol I was put on by my new practitioner was a gluten free/dairy free/sugar free whole foods diet. Food allergies and sensitivities can be causes of inflammation, so it was important for me to address these since I was trying desperately to heal. I lost 20 pounds in two months and my chronic rhinitis went away. Earlier in my story I mentioned oxalate. Oxalate is a toxin that occurs naturally in most plant foods but at very different levels – some low and others extremely high. For example, arugula is low and spinach is extremely high. You may have heard about oxalate before in reference to kidney stones, but we know from research that oxalate can go virtually anywhere in the body, not just the kidney. To complicate matters more, your body can make oxalate endogenously when deficient in vitamin B6, thiamine (B1) and/or when in oxidative stress. This is a big piece to my health puzzle that I didn’t understand at the time, so I did not focus on learning about it until a few months later. My practitioner only told me to take calcium citrate to “bind” to dietary oxalate and didn’t think it was necessary for me to do a low oxalate diet. Gluten free diets can unintentionally become high in oxalate, so I just wanted to make this note.
Recognizing and Fixing Nutrient Deficiencies
I started working towards boosting my vitamin and mineral deficiencies. Blood tests revealed that I was deficient in magnesium, vitamin D and B12. I started giving myself B12 injections every 3 days. This helped tremendously with lifting fatigue and giving me energy. I also began taking glutathione (liposomal), which is your body’s master antioxidant. It is an expensive supplement that I took for several months but could always tell that it helped to support my liver.
Blood tests revealed low thyroid levels. Interestingly, the thyroid can be used as a marker for adverse reactions as it is almost always attacked – a canary in the coal mine if you will. I learned later that the thyroid and thiamine share a reciprocal relationship. When the thyroid is suffering, mitochondrial damage is common and thiamine is low and vice versa.
I was having issues with my eyesight and painful dry eyes. I went to an optometrist and everything checked out to be fine.
January 2017: I had a stool test done that showed I had bacterial dysbiosis and was low in short chain fatty acids like butyrate. Not surprising after taking an antibiotic like Cipro! I recently read a fascinating study about how exercise can boost butyrate. Another reason exercise is good for us!
I was having severe vulvar pain, so I decided to “step up” my diet and try autoimmune paleo (a stricter form of paleo) along with avoiding high oxalate foods. I unknowingly was still consuming a diet high in oxalate.
I went to an OBGYN to be examined, and she did not think that the vulvar pain was related to me taking Cipro. (Eye roll.) My pap came back normal and a secondary test for HPV came back negative. However, I tested positive for a mycoplasma called ureaplasma urealyticum and showed no growth for lactobacillus (which is associated with microflora instability and suboptimal vaginal health.) I was given a prescription for doxycycline but was too afraid to take it.
I also began having sensory problems with my ears and was having continued struggles with tinnitus.
February 2017: I had a urine test done that showed I was deficient in vitamin A, vitamin E, alpha lipoic acid, thiamine (B1), riboflavin (B2), niacin (B3), pyridoxine (B6), magnesium and glutathione. It also showed that I had high levels of lipid peroxides indicating oxidative stress.
I used a holistic protocol to try and get rid of the ureaplasma, which included taking high dose vitamin C multiple times a day amongst other supplements. I continued taking 2000mg a day thereafter in hopes of boosting my immune system. After about 2 weeks, I developed a burning, stinging type nerve pain in an area that I had had shingles a few years ago. I learned later, that the problem with high dose vitamin C during oxidative stress is that after it is used, the product of those reactions is dehydroascorbic acid. Ascorbic acid is converted into downstream products once it becomes dehydroascorbic acid. This would include 2,3-diketogulonic acid, which is converted into oxalate without needing an enzyme. So maybe high dose vitamin C isn’t as innocent as we all thought?
At this time, I couldn’t wrap my head around oxalate and wasn’t convinced it had anything to do with me. I started eating extremely high oxalate foods on the autoimmune paleo list.
I went to an ENT and audiologist for the issues with my ears and everything checked out to be fine. It wasn’t fine, but I was used to doctors telling me that everything “looked fine” by now. The ENT thought my aural fullness was due to allergies.
March 2017: I was not doing well and felt worse than ever. My vulvar pain was excruciating, and it felt like I was urinating razor blades. My skin looked terrible. I was fatigued and spent most of the day on the couch watching my kids play. I decided that autoimmune paleo was not the answer I was hoping for and realized I should start looking back into the oxalate issue more.
I went to an urogynologist to get another opinion on my vulvar and urethral pain, and he also thought the ureaplasma was the smoking gun. He prescribed me doxycycline, but I just could not bring myself to take it. If ureaplasma was the sole reason to my pain, why does it wax and wane so much? I needed more information and starting digging through PubMed.
Blood tests showed that my thyroid levels were getting worse.
I saw my new primary practitioner (the nice one that believed me) and began getting low dose allergen immunotherapy shots.
April 2017: I was discouraged that my problems were getting worse and started to make plans to end my life again. I was going to try a few more things first and began another holistic treatment for the ureaplasma. Instead of trying to kill the mycoplasma, I tried boosting my lactobacillus. It seemed to work somewhat as it decreased the number of times I needed to urinate a day/night. What I did realize is that supporting my defenses, such as changing the terrain, seemed to be more effective than the conventional approach of trying to kill, kill, kill.
I started taking a mega dose vitamin B-complex transdermal patch.
After researching more into the oxalate issue, I decided to start a low oxalate diet and began reducing my oxalate intake slowly. I immediately started getting pain relief, which kind of blew my mind. It is highly recommended that you start this diet slowly to avoid “dumping” oxalate from your tissues too quickly which could lead to very uncomfortable symptoms or even a metabolic crisis.
I began to get hive like rashes on my legs.
I started taking quercetin to combat histamine/allergy symptoms and inhibit inflammasome activation. Although research supports many benefits of taking quercetin, I found out a few months later that it is a thiamine inhibitor. Taking high doses of quercetin, multiple times a day, is NOT a good idea for someone like me with thiamine issues.
May 2017: Things began looking up. I still had vulvar and urethral pain most days but the pain was less severe. Some days I had no pain at all! This led me to start being able to live a much more active life.
I had, what I presume to be, my first “dumping” of oxalate experience and had widespread, all over burning pain. I learned that increasing minerals like magnesium and taking Epsom salt baths can help with “dumping” symptoms.
My hair started falling out in huge clumps.
I went to my primary practitioner and got a second round of low dose allergen immunotherapy and a prescription for thyroid medication.
June 2017: I had a bad reaction to the thyroid medication. It gave me terrible chest pains, so I did not continue.
I had a two-week stretch where I felt really good. I was used to having more bad days than good (actually, in the beginning, it was all bad days), so I was elated to see such improvement. I thought I could go back to “normal” and started enjoying summer time treats like coconut ice cream and having a few tequila cocktails. Sugar and alcohol are big no-nos when dealing with thiamine deficiency.
July 2017: I started developing neurological symptoms. My left foot was numb, and I had burning and tingling in my hands and feet. I felt really strange and out of it. I even couldn’t remember my own son’s birthday.
I started getting a hive in the exact spot of the injection site of my allergy shots almost every day.
I had blood tests done that showed low white and red blood cell counts. I continued to have low thyroid levels, although they looked better than they did in March.
I had developed a friendship with oxalate guru and researcher, Susan Owens, and asked her to look at some of my previous lab work. She was concerned about my thiamine status for many reasons, and after noticing that I had elevated alpha ketoglutaric acid, was seeing a possible connection to endogenous production. There is plethora of research on vitamin B6, and it’s relationship with endogenous production of oxalate (here and here) because of its association with Primary Hyperoxaluria Type 1. It’s not as clear what role thiamine plays in endogenous production. There is a limited amount of research on thiamine dependent enzymes that help to prevent us from making oxalate. I haven’t done an Organic Acids Test to see if I have any markers indicating endogenous production, but I do know from my previous urine test that I am in oxidative stress. We know from research that humans do produce oxalates endogenously when under oxidative stress. In conjunction with a low oxalate diet, addressing oxidative stress is an important part of the approach in reducing oxalate issues.
I started researching thiamine deficiency, and it led to me to Hormones Matter. After reading all of Dr. Marrs‘ and Dr. Lonsdale’s articles, I was having light bulbs go off left and right. There was a specific piece written on beriberi that I was like THAT’S ME! I do not know if my thiamine issues are related to endogenous production of oxalate, but what I do know is that I have thiamine deficiency disease also known as beriberi.
August 2017: I tried taking Benfotiamine, a form of thiamine supplement, and had terrible chest pains. My chest hurt to the point that I thought I was having a heart attack. I reached out to Dr. Marrs who is a thiamine expert and asked if this was a normal reaction. Chest pains are common in people with a longstanding deficiency but due to the way they are metabolized, some forms of thiamine are tolerated better than others. Dr. Lonsdale wrote an article about the different forms of thiamine supplements, so I decided to try one that he recommended called Lipothiamine. Lipothiamine crosses the blood brain barrier, so you get the positive effects of thiamine both inside and outside the brain. Another unique attribute of Lipothiamine is that it does not require the thiamine transporter protein that enables the absorption of thiamine into cells. If you have any genetic defects in these transporters, which I highly suspect I do, then this is a great option for you. Side note – a family history of alcoholism can cause issues with thiamine transporters. Looking into your family’s health history may be helpful in putting pieces of your puzzle together.
After starting Lipothiamine, my whole life changed. Not to mention my hair stopped falling out! A reoccurring thought I had been having on this journey was, “Why does life seem so hard for me when everyone else makes it seem easy?” Lipothiamine made my life easy. It was no surprise to me when I read that beriberi literally means “I can’t, I can’t.” With thiamine supplementation, I was able to live a fully functioning life for the first time in a very long time. Over the next three months, I was able to start going to a bible study, church, yoga and meditation classes, counseling and able to get a part time job on the days my children go to school. It was absolutely life changing.
I did have to experiment with my dosage. I started out taking 50mg and moved up to 100mg the following week. I started having intense burning in my legs and feet, so I moved back down to 50mg. I suspect that this triggered dumping of oxalate, but that’s just a speculation based on the experience of others. Magnesium is cofactor for thiamine, so it’s important to take enough magnesium for thiamine to work properly.
September 2017: After 6 weeks of taking Liptothiamine, I had some blood work done. My thyroid numbers were looking much better. I was ecstatic to see such improvement in my thyroid labs without taking medication. Things were moving in the right direction except that my absolute eosinophils were high.
October 2017: I was getting stronger and able to start practicing yoga multiple times a week. I was seeing huge gains in health and happiness from working out.
I was still having burning sensations on and off.
I started seeing a medical massage therapist. Each session gave me temporary pain relief from the neuropathy and helped me overall feel better.
I started having consultations with Monique Attinger, the Low Ox Coach. She is an oxalate and nutrition expert and moderator of the Trying Low Oxalate Facebook Group. I wish I would have had sessions with Monique from Day 1. She is extremely knowledgeable on this complicated issue. She helped me navigate through a lot of anxiety I was having regarding food and eating out.
November 2017: I joined my husband on a work trip to the mountains for five days. I had been feeling good and thought this could be a great opportunity to celebrate our anniversary after a very difficult year. I was doing OK for the first few days but could definitely feel the effects of the altitude. On the third night, I started to feel like I was having difficulty breathing, almost like a suffocation feeling, even though I was breathing normally. I experienced the same air hunger sensation on the following night and begged my husband to drive me down to a lower altitude. On the fifth day, I flew home but was still having strange symptoms – even though I was back down to almost sea level. I continued to have air hunger that waxed and waned and had thick brain fog. It felt like my brain was broken, and I couldn’t think at all. I also noticed changes in my speech and felt myself tripping over words at times. This setback lasted for a few weeks and was absolutely devastating to me. I cried and cried and was discouraged at the thought of having to start over after so much hard work and progress. While in the mountains, the altitude acted as a stressor, and my body didn’t have reserves yet to respond to any stressors. The air hunger comes from the brainstem as an autonomic reaction. I found a study showing that mice needed 4x’s the supplementation of vitamins at high altitudes in order to normalize processes. So, I actually needed to be taking much more thiamine than normal.
I started my new job despite not feeling well.
December 2017: I had a busy month working, parenting and keeping up with the holiday festivities. The magic of Christmas kept me positive, and I started to recover from my setback.
I was still having the widespread burning on and off and had some numbness/tingling in my foot.
January 2018: So, here we are back to present day. Overall, I’m doing really well and am trying to take things a little easier after a busy holiday season. I am not completely symptom free, but I am tremendously better than I was when this journey started. Most importantly, I am happy. I currently started supplementing with a transdermal vitamin D patch. Vitamin D is the backbone of the immune system, and I am not getting much sun lately with the cold weather. There are a few more supplements that I am interested in trying like riboflavin, biotin, vitamin A, MSM and MitoQ.
In closing, I hope that my story can help spread awareness of the dangers and devastating effects of fluoroquinolines. I’m still learning new things everyday and am hoping to someday be better and healthier than I was before Cipro. I have had a funeral for my old life and am slowly finding a different and better me. I am taking this injury as an opportunity to love more deeply and hoping to help others through my experience. My best advice is to always trust in yourself, do the best you can with your nutrition, and take your thiamine. Give the rest to God. If you believe in your inner strength, you’ll see it every time you face a crisis.
For more information on oxalate and the Low Oxalate Diet, please go to the Trying Low Oxalates Facebook group. Susan Owens has provided all of her research in the files section, and the moderators and members are wonderfully helpful.
For more information on thiamine, please read the articles by Dr. Marrs and Dr. Lonsdale on Hormones Matter. They have also written an incredibly informative textbook called Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.
Thank you to God and all of the amazing women researchers that helped me find healing.
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Hello 🙂
I wanted to share my story & hopefully get some advice.
In November of 2021 I was floxed. My doctor prescribed me with a 7-10 day dose of Levofloxacin for a complicated UTI. Without any prior complications to medicines, I took the medication. For 2 months after the last dose, my muscles ached, burning sensations all over my body, I couldn’t do daily tasks. Somehow, almost 2 months later and the pain miraculously stopped. Although my inflammation markers were elevated when I saw my PCP, I felt great. I would have some inflammation or joint paint throughout the next 2 years, but never to the extent of being floxed. Also, shortly after being floxed, I stopped having my period & had burning pain in my vulva. Despite spotting on and off for a few months back in 2022, I had no infections. It was a tiring process. Apparently I have PCOS, so that could be a reason why my periods came to a dead stop, but the vulvar pain never did. And it waxed and waned. Some days I would be pain free and other days it would feel as though someone threw hot sauce on my vulva. Doctors couldn’t explain it but I had a feeling deep down it was because I was floxed.
Fast forward to March 2023, my OBGYN suspected I had a yeast infection and prescribed me Diflucin for 3 days every other day.. and my symptoms of being floxed returned. My neck started to hurt, my arms are on fire, my joints ache. Reading your blog, I’m now relating it to oxidative stress. I’m stopping the third dose. But I am petrified to be where I was for those 2 months. Just like you, I didn’t think I could make it. And from taking ibuprofen to cope with the pain back in 2021, it left me with an inflamed stomach lining and now I take PPIs in order to eat, free of indigestion and inflammation.
I’m just not sure where to turn and I’m scared. Will my symptoms get better? What can do I? Who should I see? I don’t have the best insurance there is, so I feel stuck.
Any advice helps, much appreciated!
I had a 5 day pill of cipro for a uti. On July 2018. I woke up after the first or 2nd day and i had a sharp pain in my right knee. It only hurt for a few seconds then pain was gone and i didnt think about it. The 4th day i woke up and i my legs would not go forward. I could not move my legs. I slid over to my power chair as with my bad back and spine i could not walk very far. I used 2 canes as it was too easy to fall and it helped. I went out and did some chores then came back to slide over to my lift recliner and as i slid over to the recliner i heard a snap. I called my neighbor who called a ambulance. I found out my patella snapped straight across my knee. They kept me in the hospital for 3 days then sent me to a home to recoup and learn how to transfer from bed and commode. The home checked my body and found the back of my legs had welts. They hurt terribly and were very itchy. After 3 months of therapy my knee was healing as they put 2 screws in it. Then they said it was time to sign my house to them for care. I said i wasnt staying and they said you cant leave until you can transfer by yourself. I had 5 days to to do that. I did it and then they still didnt want me to leave. They werent even going to let them take me home in their bus. Finally i got to leave. While i was their i had terrible pain in my hands arms and legs. They had to give me pain pills several times a day/night. The back welts of my leg i guess looking better as they kept putting creams on it. I had an appointment a few times and they had put a brace on my leg as it was still healing. After my brace was taken off i found out that leg had to put cream on the welts on that one too. My face is red and had welts. My arms had tiny red dots on them. My problem was all the doctors said no it wasnt the cipro. Also my family thought so to as if the doctor said it it is book! They said the cipro couldnt do all the stuff that i had said was happening! I have pictures of everthing except the welts but yhose would be at the home where i was as they took pics of my legs. My badder will still burn of and of and my bladder will just void itself without enough time to get to a commode to go. Once a year it seems like my knee starts feeling like it could break so i am very careful when it feels that way. I also have a time where i can move my legs afew steps forward woth a walker and then boom it goes away and my legs wont go forward again. Will all that go away some day? When i stand i can stand about 3 minutes holding on to the back of my hospital bed. My legs feel like they are 100 lbs each as i can not lift my leg. Some times every couple months passed i might be able to lift my leg a bit then it goes away as fast as it came. I am a lot older than most cases i read.
Thank you for sharing how real this is. I almost feel like I never got a chance at life. I was floxed many many times since I was young. Add to that I was put on the pill and very high dose Paxil. And like many women it started with a uti. I was only a baby at 16. By 19 I had brain lesions, had lost a massive amount of weight (85 lbs at 5’4”), and had a slew of issues. It’s been a constant uphill struggle and I’ve been put on extended doses of antibiotics. I’ve had most of the floxies. Because hey one doesn’t work so let’s give her another kind. I can note each time I was floxed again, massive weight loss and my health would decline even further. And the constant screaming urinary pain has been since I was 24 when they then diagnosed me with interstitial cystitis otherwise known as we don’t know what’s wrong. You have high wbc’s but no infection and likely urealplasma if you actually know enough about it to demand specifically one of the 500 doctors you’ve seen to test for it. I’m now mid 40s have no support. My story reads very much the same as this and the same as those who got the Gardisil vaccine. I eventually stopped going to doctors. The more they tested the more the found and they just wanted to start cutting things out and putting me on all kinds of meds to which I said no. I had a mother who had a very similar journey and she ended up addicted to pain meds. I went all natural and self treated. There are times I really wish I had the ability to go see a naturopath or at least get testing done. I had Medicaid for a time and the doctors were so awful I was better off not going at all.
I have no way to care for myself. No support system and out of money. Had I not had some semblance of faith and small miracles I would not still be here. Being isolated this long going through this I genuinely don’t know how I’m still alive except for the Grace of God. But in recent years my faith has really fallen into question as well. I’m an educated woman and cannot find work despite applying to jobs constantly (have to wfh) for many years straight. Even tried to do the self employment thing but when you’re so lack for energy and sick it’s nearly impossible to expend all the extra energy needed for self promotion and the money that goes along with it. I don’t think enough people realize how serious this is.
I have had a healthy lifestyle for the last ten years. I keep oxalates low. And do mainly chicken eggs and a few select veggies with occasional oranges. I don’t take any drugs or drink even otc. I have issues with sulfur (cbs gene) so even Tylenol, Advil’s make me feel bad. I’ve just had to navigate this on my own. I’m constantly trying new things. Testing all my foods. By the time I even found out about oxalate I had already tested everything and knew what caused me issues but didn’t know why. I’m sensitive to damn near everything. And many of the supplements cause issues as well. Some days I just want to lay down and not wake up. I’ve barely left my apartment in years. I used to be beautiful and had a zest for life. Now I’m like a husk of a human being. But I just keep hoping. Now I’m trying the thiamine but so far I feel awful so I’m going very slow.
Thank you to everyone who shares. We need you.
Hi Britney! Was the primary doctor you were seeing (the one who believed you) a functional medicine doctor? Do you think you would have healed sooner if you too the Lipothiamine earlier in your story? When did your eye problems go away (I have floaters)? Sorry, so many questions. I was floxed in April and just figured it out two weeks ago (thought it was all from a benzo situation that was given during the same time – my new functional doc was the one who brought up floxing). Struggling with the nerve tingling all over (comes and goes), headaches/pressure all the time, brain fog, sleep issues, loss of feeling in nose and lungs, floaters, etc. This post has been so helpful for me – I had 3 kids, two years between each, was running life hard in between and was exhausted and under high stress. And now I am hear. Some days I am hopeful, others totally hopeless. Would love to hear from you. Apprecaite this post Britney, as it provides me with hope for healing and being able to get my life back.
Pls i given Cipro to treat infection in the stomach n just a day after taking it I feel a burning sensation n itching in body n legs
I was floxed in 2004. I have been permanently disabled ever since. My symptoms mimic those of the authors and it is truly a horrific experience. The biggest frustration is that no one believes me. I have been suicidal as the pain is soooo unbearable. My best freind recently told me i was just too much drama and if i just found Jesus i would be cured. As it is obvious i have not found Jesus and i need psychiatric help she can’t be my freind any more. It was heart breaking.
Just saw your question about flukonazol. You may have found this out already, but that medication is an ant-fungal, not antibiotic. Hope things are going better for you.
Hello Brittney, I was recently floxed and going through this same situation right now and need all the help and advice i can get, I also tested positive for Ureaplasma, I’m wondering, How did you get rid of it ?? Your response will be of great help to me.
Did you get rid of it
Hi Britney,it is these stories that keep us going. I am 17 months post flox and believe me I have every symptom except tendinitis. 9 months post flox I don`t no how I made it through. Of course every floxie has their own symptoms and mine seem to have been the very worse. Now the crazy part is after 22 er visits and 26 different Dr.s it took me 15 months to figure out I was floxed. I was diagnosed with IBS, candida, anxiety,
allergies, sibo, ear tube dysfunction, rhinitis, leaky gut, dysbyosis,cns dysfunction, diabetes,at the very least. As you would know which ones were an actual real diagnosis. Also had extremely full ears were I had ear tubes placed in the ears mainly for relief but also to fly to my Moms to be taken care of as I was totally dysfunctional.I just started with one of the very few flox doctors. I am hoping this will be my answer as every other doctor left me with more suicidal thoughts.I never knew I was this strong. Things are a little better as I can even write this post. Just started driving again here and there. For the most part I am dealing with rhinitis ( rare for a floxie) autonomic and peripheral neuropathy. also severe anxiety. The good part is that I am experiencing my third cycle. It is a damn shame that the same establishment that poisoned me sends me away when asking for help. I have more respect for drug dealers and functional medicine.It also ashamed that I would say that twice even louder. So as I write this one of the theorys looking at my labs are that my good cholesterol is way low and building that back up so I can create new cells as I jump start my immune system. Taking glutathione pushes, b12 shots, magnesium and believe it or not one week of 200,000 iu`s a day of vit d for a week. As I still suffer I will do my duty to give any info and post were I can as to help others as you did. Because we are left to our selves. Hope you are doing much better as I will some day. Thanks for your story
Hey Kenneth – what floxie doctor are you working with? How are you doing now? Any progress since you posted this?
Kenneth
Can you please let me know who the flox doctor is and how you did with him. I only found 2 doctors that supposedly deal with this and am contemplating on going
I wonder if doing nothing at all will not give the same results. Some are destined to bounce back from cipro. My body recovered more or less 2 times. The third time however a bomb exploded and it was game over. The only thing that made a noticable difference was time and dryfasts. Taking lots of supps as well, most plant based diet now. It is something you better avoid. Life became a struggle with so many downs and giving ups , I sometimes wonder how I am still around. Stemcell for worst cases like me seem to give some hope. Look into dr ghalili and dr hanson.
Hi,
It’s great to hear about someone who recovered.
I’m 29 and I’ve been having joint problems since I took Cipro four months ago. I’ve stopped running and hiking but I’m still riding my bike quite a lot. That keeps me sane.
Someone who also had an adverse reaction told me that exercising too much can really make it harder for my body to recover. She said I should be strengthening my muscles lightly without putting my joints through too much.
Did you keep exercising through all of this?
Thanks so much.
Stephanie
Hi Stephanie, yoga was really helpful and gentle on my body in the beginning stages of my healing. I’m able to work out harder with cross training now. There is hope! Keeping a positive and hopeful mindset is key!
Thanks so much for the reply.
How did u recover from the burning urethra
Thanks so much for the details in this post. I’m 29 and I’ve been having joint problems for four months since I took Cipro for a few days for mild traveler’s diarrhea. I was very active before and now I can’t run or hike. Thankfully I can still ride my bike.
I’ve already seen a sports doctor and two different physical therapists. But my symptoms still go up and down.
Would you recommend seeing a naturopathic or holistic doctor based on your success with supplements?
Thanks again. It’s great to hear a recovery story. There are so many heartbreaking ones about these antibiotics online.
Hi S, I saw a holistic practitioner that was open to ordering the lab tests that check for nutritional deficiencies. That was a great help in pointing me in the direction of what I needed to research. If you cannot find a Dr. or afford the testing, I would suggest trying vitamin b1 (thiamine) and magnesium. I had profound healing from thiamine. I am fully recovered now, so there is hope for you!
Hi Britney, do you still suffer from dry eyes? Because I am also suffering from dry eyes and I want to know if there is any hope.
Thank you.
Hi George,
No, I do not suffer dry eyes anymore! There is hope for you. I’m so sorry you are suffering. You will get better.
Hello. I have been sick for many years and am just starting to think that Cipro might have been the culprit. Do you know if there is any way to test for that? I have had years of testing that have shown nothing irregular. Thank you.
I had loads of testing and majority of my tests came back normal. I understand your frustrations. The most valuable test I took was the Optimal Nutrition Evaluation (ONE) from Genova. I was able to see that I had thiamine deficiency amongst many other deficiencies and able to formulate a plan of action with targeted supplementation.
Hi BLW, My name is Laurie. I was poisoned by Ciprofloxacin on 4/18/2017. I was diagnosed with drug (Ciprofloxacin) induced Lupus and sensory neuropathy. I have severe insomnia, white brain lesion, skin looks sunburned, skin is uncomfortable to scratch, brain fog, intermittent burning on the soles of my feet, intermittent burning with urination, anxiety attacks, experiencing tendon damage now, I don’t know what to ask my dr to test for, what blood work to have done. My Ana was positive. Low vitamin d. Weight gain and high cholesterol. I’ve changed to organic products as much as my finances will allow. I take myKind organic multivitamin, myKind organic b-complex, myKind organic vitamin d3. K2, Magnesium glycinate, collagen, biotin, probiotic, cbd oil(I have medical mj card, and melatonin. Sometimes I feel like I may be getting better then bam I feel horrible again. I just don’t know what to do anymore to heal. Can you please help direct me to what blood work to have done? Then what to do after? I don’t know why but I have a hard time concentrating on reading anything anymore. I purchased the ebooks from floxie hope and that directed me to some of the supplements I’m using but, I don’t know why I’m not getting better. I am in a fixed income so I cannot afford to waste my money. Should I try the Liptothiamine?
Hi Laurie, I am so sorry you are suffering. The lab test that I found most helpful was the ONE (Optimal Nutrition Evaluation) by Genova. It is expensive though, around $300. I would definitely encourage you to try taking thiamin. There are different forms and you may have to try a few to find one you like. I personally take Lipothiamine. My mom takes Allithiamine. I started with one pill (50mg) and worked up to 100mg after a few months. There are a lot of articles on here (Hormones Matter) about thiamin if you want to learn more. Riboflavin (B2) helped tremendously with the burning!! For magnesium, try switching to magnesium malate and see if that makes any difference. I’ve read it can be helpful with chronic pain and is what I take.
What does your diet look like? What are the top foods you eat? Changes in my diet helped the urinary burning. I can give you more info on that.
Same
Burning and its making me
Not wanna keep fighting i tried antibiotics and they didnt work
Question to the author of this article – what was the dosage of Cipro and Diflucan you took? Did you feel the effects of Cipro right away or next day onwards? How many days did you take Diflucan?
Also, can you please let me know the name of the test and company for bacterial infection. And did you take the antibiotic prescribed for that? If yes, hope that didn’t cause any problems .
Your answers will help me greatly with my condition.
Thanks
I have floxed symptoms after taking Fluconazole for candida. I took 2 tablets, but 2 weeks apart and then just 2 days ago I was given an IV of it. I noticed my trouble after the 2nd tablet, but hadn’t made the connection, When I read the definition of being floxed is said continue exposure to the fluoride in that tablet for 48 hours. For me 1st and 2nd dose were 2 weeks or more apart and the IV was a month after the 2nd tablet. I do have symptoms for the last 3 weeks, feverish feeling, nausea, vomit a couple times, hair falling out, dry eyes, anxiety.
How long does it take the effects to show up. And to clear up? I hope and pray that as my intake was with long gaps, God will heal me soon. Does the IV flush out of the system easier than a tablet?
To make matters worse, I am 10 months into withdrawal from benzos.
Can the author please tell me the names of the tests she did and the names of the company, for vitamins and minerals, and the urine test, and any other significant test.
Many thanks.
Hi Island Girl, first of all, I am so sorry you are suffering. It’s a very dark and scary place to be, but just know, that things can get better for you! My symptoms showed up immediately within the same day and severe symptoms within a week. BUT, I am almost two years out and am doing great now. There is hope.
I took 500mg of Cipro twice a day for 10 days. I took the entire prescription.
I do not remember the amount for the Diflucan, but it was in a single dose package. I was prescribed 2, but only took 1.
I did not take the additional antibiotic prescription that I was given for the ureaplasma.
The test for the ureaplasma that my OBGYN ordered was through Medical Diagnostics Laboratories.
The urine and stool tests were through Genova, and I believe you can order these on your own.
Many people take an Organic Acids Test with Great Plains Laboratories and have Susan Owens interpret the results. I can connect you to her if you would like.
The benzo withdrawal may be adding another layer to your symptoms, as I know that is a beast all in itself. Are you still cutting down or off completely?
I take 100mg of Lipothiamine by Cardiovascular Research, 250-500mg of Magnesium Malate by Seeking Health, 10,000 IU of Vitamin A by Pure Encapsulations, 73mg of Riboflavin 5′-Phosphate by Thorne, 8mg of Biotin by Pure Encapsulations and B12 (B complex) patch by PatchMD.
For me, the Lipothiamine, Magnesium and Riboflavin were the life changing supplements on this journey.
You may want to also look into the faceboook group for the low oxalate diet. It’s called Trying Low Oxalates. Many listmates have had great success with this diet after being floxed and/or problems with yeast. Also, Biotin can be great vitamin for treating yeast!
I took flukonazol 2 months ago, 2 tablets. And it left me with burning sensations all over my body, all day, everyday, to High or low degree. Thats the worst symptom.. And sweating, anxiety, brain fog, brain zaps. Toy name it.
Didnt know candida-meds could do this to you.. Is that a antibiotic?
Doctors just tells me its in my head, and maybe some acid reflux ? Hows it going for you?
Hugs XX, Simone
Hi Simone, I’m so sorry you are suffering. I wrote this a year ago and would consider myself recovered now. Riboflavin helped stop the burning. I take riboflavin 5’ phosphate if you want to give it a try. I take 36.5mg twice a day. I made huge gains from adding riboflavin into my routine along with thiamin. Blessings to you!
Hello this is happening to me at the moment. I took levaquin . I’m young and I feel like I’m going deaf in both ears. Can someone please help . 909-993-6133 Nicole .
As a physician, this article makes me ashamed of my profession. I read the description of the struggles by Britney very carefully and it has given rise to 22 points that I want to address.
1. Question your doctor, particularly if he is saying that it is “all in your head”.
2. Flank and back pain: they “assumed” that she had a kidney infection and gave her a dangerous antibiotic on speculation.
3. Stress: it is no wonder that she was stressed, but this incident had followed an illness that would take a great deal of energy so she was already energy deprived and indeed it might have been the cause of the flank pain. In fact she had “panic attacks” that are caused by lack of energy in the lower part of the brain that is particularly sensitive to thiamin deficiency.
4. She took strong coffee, ostensibly to meet the energy demand. Coffee consumes energy, it does not make it and it is a common mistake for chronic fatigue, only making things worse.
5. Cipro is a dangerous antibiotic that can cause tendons to snap even a year after taking the antibiotic. This strongly suggests that it damages the mitochondria.
6. Vulvar pain is nearly always considered to be psychological. Please remember that all pain is perceived and registered in the brain. It has nothing to do with psychology.
7. Britney describes a huge number of bizarre symptoms, invariably treated as psychosomatic. In actual fact, beriberi, the vitamin B1 deficiency disease, is the great producer of bizarre symptoms, none of which are pathognomonic (solely due to this disease). Doctors generally know nothing about this disease because it is considered only history. Their ignoranc is bounced back onto the patient who was told to “pull herself together”.
8. Oxalates. I know and respect Susan Owens quite well and we have discussed the relationship of oxalates with thiamin deficiency.
9. Suicide temptation: what an appalling outcome for an innocent and long-suffering patient.
10. Notice the physician who gave reassurance. This has long been known as the “bedside manner”, much forgotten in today’s medical arena.
11. Exaggerated hearing is a typical symptom of thiamin deficiency (but clearly not the only cause).
12. Notice the recovery of the thyroid. My analogy for this is that the mitochondria are the “engines” of the cell. Thyroid is the “flywheel”. Speed up the engine and the flywheel will also speed up.
13. We are beset by a whole lot of unusual microorganisms that are recognized as opportunist in nature. They only attack those that are weakened. Treatment must be related to the weakening.
14. Notice that she got hives. Hives are caused by histamine released from cells in the skin. They do this because they receive a signal from the brain. These “unnecessary” signals are produced by an energy deficient brain in the form of a fight or flight reflex.
15. Hair falling out: this is typical of energy deficiency and I’ve treated it with Lipothiamin.
16. Neurological symptoms: absolutely typical of beriberi (but obviously not exclusive).
17. Elevated alpha ketoglutarate, a guarantee of thiamin deficiency.
18. As I have said above, all or these symptoms are typical of beriberi, none of which are pathognomonic (guaranteed indicators).
19. With prolonged polysymptomatic disease like this which has been shown to be related to thiamin deficiency, consider the possibility of missing thiamin transporters. These are proteins made in the body that are necessary for the absorption of this vitamin.
20. Notice that when she took Lipothiamin she got worse and stopped it. Look for a post on this website that discusses this as paradox. Symptoms become worse before they get better. All you have to do is to persist with the derivative.
21. Notice that she reported increased eosinophils in the blood. Look for a post on this website entitled “Is eosinophilic esophagitis a sugar sensitive disease?” The patient had many psychosomatic symptoms that were relieved with Lipothiamin.
22. When she was relatively well she climbed a mountain with her husband and developed “air hunger”. This indicated that her brain was still deficient in thiamin and was unable to cope with the rarefied oxygen at altitude. This could have given rise to mountain sickness if she had not gone down again.
It always distresses me to hear what people have to go through to find their way back to health after they develop a serious problem as a drug reaction. You have described that process so well, Britney.
I believe this is why there is a new crop of researchers that has arisen to this cause. Many are combing the scientific literature for explanations of what went wrong, and are trying to develop strategies on how to reverse the damage.
A great deal of scientific literature has been missed and not applied in medical circles. Now many academic sources are free access, and available even to those who are sick and looking for solutions. The internet has also given us the availability of resources like this blog that show us the science we may have never known.
Learning what has already been found by scientists but was not taught in medical school, is now so much easier!
One other thing: To those of you who find yourself trapped by an adverse reaction to drugs (and that has happened to me in major ways twice) I can say this. When you have suffered seriously in any area of your life, it suddenly connects you to those who also suffer for the same or for other reasons. You learn what it is like to have the rug yanked up from underneath you. You will learn (while solving your own problem) how to connect with others who have the same or other sorrows, but now you will understand how to love them through it. I’m beginning to believe that until something awful and unanticipated happens to someone like this, they may miss out on learning that there is a richness of life that people find through their suffering. At least suffering has this good side. Please, while you haven’t yet found your answer, let this truth that Britney has found become real to you and let it nourish your heart.