Patricia’s Story of Recovery from Cipro Toxicity

Summary Details: Story date: October 2019 (18 weeks after Cipro) Dose Taken: Cipro XR 1000 mg/day for 2 days (Total= 2000 mg) Date of last dose: May 26^th, 2019 Reason: To prevent possible infection in small forehead wound. Original prescription 1000mg/day for 7 days (only took 2).   Whole Story: My name is Patricia, I’m 31 years old, and I live in the Dominican Republic. Four months ago, on May 24^th, 2019, I suffered a minor accident, and a small cut in my forehead.  The plastic surgeon who stitched the wound prescribed Cipro XR 1000mg/day for 7 days to “prevent” an infection. No warnings were given and I hadn’t taken this medication before (or any other fluoroquinolone). I am allergic to NSAIDs, so thankfully I wasn’t prescribed any. I looked up Cipro online before taking my first dose, but I didn’t find anything suspicious. I was actually glad to be prescribed antibiotics at the time, since a very close friend of mine recently spent 7 months bedridden and underwent several surgeries because of a wound infection that wouldn’t subside. Before taking Cipro I was healthy but had been on a 1200 calorie/day diet for 1 week, therefore I believe my body wasn’t particularly strong when I took the medication. The day following the accident I took the first dose after lunch. I was feeling tired that day, I am not sure if due to the medication. The next day was Mother’s Day in my country. I woke up very excited, with a lot of energy, ready to celebrate the day with my mom and my whole family. After lunch, I took my second (and last) pill. Literally 5 minutes after I took it I started feeling sick, similar to how I feel when I get the flu. I told my family I had to lie down because apparently the antibiotic was too strong. Late afternoon, still in bed, I started feeling tingling sensations in my hands and wrists, cold fire in my feet, and numbness in my legs and arms. I could move and walk, but they felt extremely heavy. I immediately messaged my doctor and asked if there was a different antibiotic I could take, because I was having weird reactions to Cipro. He told me I could stop taking it because I did not have any infection in the first place. No other antibiotics were prescribed. Since I was feeling so off and strange, I began researching side effects of Ciprofloxacin and was absolutely shocked. I read story after story about people who had taken even less doses than me and were still fighting the strong side effects 4 years out. That same night I downloaded the “FQ Toxicity Solution”, read the whole thing in absolute horror and decided to stay in my mom’s room for the night. I didn’t sleep that first night, out of panic, weird cold sweats and shivers. The following day I headed to a supplement store first thing in the morning. 19 hours after my last dose I started taking liquid magnesium chloride, CoQ10, NAC, B12 (Methylcobalamin), Vitamin B6, Selenium and Vitamin E. The Magnesium bottle I bought wrote “Magnesium is depleted during stress – both physical and emotional”. I realized that the accident probably had depleted me of any magnesium I had in my body before I started taking Cipro. That day I also visited a Neurologist, got a CT scan of my head, which showed the forehead wound was superficial and the accident didn’t cause any significant injuries. I spent the next two days feeling ill, with insomnia, very tender knees and ankles (not painful, but they felt as if they could break with every step), extreme fatigue and numbness in arms and legs. The third day after taking the supplements I was able to sleep, and the fourth day I felt almost 100% better. I wasn’t sure if I had been indeed floxed or if my reaction was due to the drug being still in my system and/or the lack of magnesium and other nutrients inside my body prior to the antibiotic. I did not know how to act after this three-day episode (should I continue taking magnesium and the other supplements? Should I take high doses or low doses? Should I continue my life normally or should I act as if I was floxed?). I asked in several forums and got no answers. I continued my supplements regimen for 1 week, then I dropped most of the supplements and took only NAC, Magnesium and my Multivitamin. Fast forward week 3, I had forgotten about the whole thing; I was having coffee, coke, birthday cakes, aperol spritz and beers… I was living my life normally. On the weekend I went out dancing with my friends and had a little too many drinks of vodka. The next day I felt hungover, the following day I still felt hungover, which was not normal at all. On the third day I started having an eyelid twitch and by the afternoon I knew the answer to my question: I was floxed and now alcohol had exacerbated the neurotoxic reaction that started with Cipro. The next 6 weeks I suffered what I believe to be the acute phase of my reaction. I had the following symptoms (most of these symptoms appeared and disappeared throughout the days and even hours):

• Pins and needles throughout my body and face
• Pain in my right knee and left ankle, and overall tender joints
• Severe migraines and light sensitivity (every day for 1 week) that would worsen at night
• Severe fatigue (couldn’t stand up for more than 5 minutes at once)
• Insomnia (some days I would not sleep; most days I would be able to sleep 3-5 hours)
• Upper back pain
• Heartburn
• Dyspnea – chest pain and difficulty when I tried to take a full breath (longest symptom that didn’t go away for 6 weeks).
• Extremely dry skin in hands and feet (skin was flaking for weeks)
• Extremely thirsty all the time
• Cold sweats during my sleep some nights
• Random crying spells every day
• Overall feeling sick and unwell all the time

At week 4 of my acute phase (week 7 after Cipro) I thought I was making a full recovery and went out with my friends to a bar. The air conditioner was too cold; I was having goosebumps the entire time. I started having muscle pains in my arms and legs and feeling unwell overall. When I got home I spent three hours wrapped under two heavy covers shivering, as my body was unable to return to a normal temperature, even in the Caribbean summertime. This is how I learnt I was experiencing some autonomic nervous system dysfunction (which could also explain why I was having inconsistent digestion patterns throughout the days). That episode started a setback that lasted about 2 weeks. After those 6 weeks of the acute phase I enjoyed 6 weeks almost symptom free. Then, I had a small setback of about 1 week (week 16 after Cipro). The only symptoms I had that week were: peripheral neuropathy started acting out again, insomnia, ankle pain after waking up and mild dyspnea. The fatigue, dry skin, migraines and cold sweats have not come back since week 9. During the whole process, I consulted many doctors (MD): Internal Medicine, Neurologist, Gastroenterologist, Orthopedist. Most of them believed me and had some (vague) knowledge about FQ adverse reactions, however they couldn’t help. Since there is no test to diagnose, nor a standard treatment for FQ Toxicity, they could only tell me to wait, cross my fingers, eat very healthy and drink tons of water. All my bloodwork, MRIs, NCV Test, were normal, except that I had some Vitamin D deficiency. My thyroid markers were normal at week 4 after Cipro, but at week 8 some markers were out of range, especially my T3 was really low. It has now regulated.   What I did to recover: I did several things to recover. Human beings need to feel they are doing something to solve a problem. I am not sure what worked and what didn’t, but I certainly felt better being proactive about it:

1. Consulted an Osteopath Doctor in New York (Dr. Neil Paulvin): I took the money I had saved for a vacation in Iceland and visited Dr. Neil Paulvin in New York. He recommended a new supplement routine, which I would follow from week 6 to week 10 after Cipro: Probiotics, CoQ10 (Ubiquinol), PQQ, NeuroMag (Magnesium L-Threonate), Magnesium Chloride, Vitamin D3, Omega 3, Multivitamin. Magnesium oil also helped a lot with joint pain and tenderness.
2. During the acute phase, I ate organic, gluten free, antibiotic and hormone free, diary free, (added) sugar free, soy free. I didn’t experience major problems with my gut, therefore I was following a clean diet to avoid any inflammation or extra toxins inside my body.
3. Listened to sleep hypnosis videos on youtube. I wanted to avoid taking sleep medication or supplements. I found Dan Jones Hypnosis videos on youtube, and most nights they helped me fall asleep, especially “The Magical Mirror” story. I wasn’t able to sleep for more than 3-5 hours, however, I truly believe that sleeping some hours most nights helped me recover fast.
4. Started seeing a psychologist:

During this ordeal I developed health anxiety. Any new symptom would trigger severe anxiety and obsession with looking up information about it. I never had any mental health issues before Cipro. I don’t know (and maybe will never know) if this was Cipro induced anxiety. It could also be that this particular uncertain health situation triggered parts of my personality that were unknown to me. Prior to Cipro I believed I was a very positive and strong person, but as soon as I became floxed and there were no timelines, cure, treatment, I became very negative. I thought I could “falsely control” the situation by reading 24/7 about the condition, every symptom, every possible symptom. I felt as if reading about it and understanding it, somehow would prepare me for the worst.  But one day one of the doctors I visited told me: “You want to control the situation, however you are letting fear control you instead”. My psychologist concluded I was having distorted thoughts, specifically “Predicting the Future” and “Catastrophizing”. Even though I feel better, I am still working on this by learning Meditation, since I want to be a stronger person throughout the difficult times in my life.

5. Avoided medications: Every doctor I visited prescribed something different: Lyrica, Xanax, Nucleo CMP Forte, and others. I’ve forgotten most of them, but there were many. I refused all medication, except for half a pill of Diphenhydramine for my insomnia on 3 occasions during the acute phase.
6. Read ONLY Floxie Hope stories. Because of the health anxiety I was experiencing, I couldn’t handle to read about permanent irreversible damages or about severe adverse reactions. Even stories on Floxie Hope sometimes triggered my anxiety, when I read about new symptoms appearing several months after Cipro. However, reading about similar situations and knowing that it is possible to recover fully, helped me get through the darkest times. Lisa, thank you so much for what you do for this community, words are not enough to express my gratitude towards your work and compassion.

It is useless to try to predict when we will recover, only God knows. During this time, I isolated myself. Stopped talking to my friends, stopped going out or posting on social media. At one point I resented my close friends for not understanding what was happening to me. I am not sure if my attitude would be more positive if I experienced a major relapse. It’s easy to think clearly when we are feeling better. But I would definitely try. It’s worth it. During this time, I also understood that nothing can replace family. We know it, but times like these serve as a friendly reminder. My mom, my father and my sister went out of their way every day to understand, give me strength and hope. My mom prayed a lot for me, cooked for me the days I couldn’t get out of bed, took me to many doctor appointments. My father helped me financially during this ordeal. Now, I continue to eat mostly organic and antibiotic free. Several weeks ago, Lisa recommended that I tried new things slowly as I felt comfortable. In the past weeks I’ve tried normal food and meats (a veterinarian friend of mine assured me that in my country they use Tetracycline instead of Fluoroquinolones in animals because it’s cheaper). I had a glass of rosé two weeks ago, and a glass of champagne one week ago. I have desserts and gluten sometimes. None of this has caused any major setbacks. I have tried coffee twice and both times the chest pain and back pain have returned for several days.  I haven’t tried any heavy exercises or swimming in chlorine pools. Two weeks ago I started exercising 3 times per week with a physiotherapist. The exercises I’m doing are similar to Pilates. Now I’m only taking Vitamin D, Magnesium Chloride, B Vitamin Complex and CoQ10 (Ubiquinol). If you recently became floxed, please believe that it is possible to get better even before you think you will. Nobody knows what your timeline will be, but consider that the worst case scenario is not the only possible outcome. In my case, about 30% of my suffering was due to the mental state of constant worry, anxiety and desperation. I feared mostly for the health of my eyes, my ears and my mind. I know I am extremely lucky to have recovered this fast. I’m sure there will be some lingering symptoms here and there for some time, but they don’t interfere with my daily life anymore. I have this newfound appreciation for my body, for the effort it has put in to heal despite the poisons I took. I am so thankful for my life, for having the chance to feel normal again. I really hope from the bottom of my heart, that all those who are battling every day to survive this illness, can recover soon.

Update 2 years and 4 months after Cipro:

So now I am writing this in October 2021. I think I might have been a little too optimistic when I first wrote my story. I was not completely healed after all. I developed a few more new symptoms after I wrote it.

• Tachycardia episodes: The rest of 2019 I had several episodes of tachycardia, but this symptom subsided by the end of the year, and has never returned.
• Peripheral Nerve issues: In November 2019 I started experiencing numb hands while sleeping. I also had bilateral arm weakness and pain. The doctor diagnosed me with Carpal Tunnel Syndrome in both wrists at the same time. I started sleeping with wrist bands and taking “Nucleo CMP Forte” (Neuropathy Supplement). Several weeks later I also started having pain in my elbows, and my pinky finger started getting numb while sleeping. So, I was diagnosed with Ulnar Tunnel Syndrome. This went on for 3 or 4 months and then it subsided. I occasionally still wake up with numb hands/fingers and my extremities go numb very fast when I put pressure on them.
• Lipomas: In December 2019 I discovered two bilateral lipomas near my elbows that were not there prior to being floxed. I have read of some floxies that also get them, but I do not know exactly why. They are small and do not cause me any trouble.
• Head, Neck and Shoulder pain: In April 2020 I started getting debilitating neck pain. I had to go to bed several times during the day to rest my neck. I was also experiencing afternoon tension headaches every day for several weeks. These pains lasted for about 1-2 months. Then they subsided.
• Peripheral Neuropathy: In May 2020, Neuropathy came back for about 1 week, which felt like small needles and raindrops over my whole body. It has flared up several times since then, but rarely lasts more than 2 weeks.
• Costochondritis/Intercostal Neuralgia: In April 2021 I started having chest pains. This was a constant pain for several months. After visiting some doctors, one said it was probably Costochondritis and the other Intercostal Neuralgia. I still get the pains randomly sometimes.