In July of 2014, I took a course of Cipro – a drug that belongs to the class known as fluoroquinolones. I knew I had sensitivities to medications in the past like complete fatigue and muscle pain from Metformin, and various allergies to other medications. Cipro was one I could tolerate in the past for a UTI. I am a pharmacist. I had been led to believe, by the warnings on fluoroquinolones, that the risk of toxicity was reserved for those over the age of 65 with impaired kidney function. That wasn’t me. I would be safe….So I thought…
Backing up a little – prior to this course of antibiotics, I was teaching 5 power spinning classes a week, boot camps and yoga. I had run the Nike Women’s Marathon in San Francisco, and the Big Sur Marathon 6 months later. I had run several half marathons and little races just for the heck of it. I had just gotten back from a trip out West where my four children and I climbed mountains, and rocks, and ran and hiked – I was at the top of the world and on top of my game.
So by day 5 of this antibiotic, I started feeling a twinge of something in my right elbow. It seemed peculiar because I was very conditioned and very strong. Over the course of the next week or so, all the other tendons, muscles, joints, vision, hearing and nerves became involved. Slowly but surely, whatever was happening was progressing to the point that I was in immense pain. I could not walk, I could not lay down, I could not sit without pain. My brain function started declining. I was adding up my Pharmacist Continuing Education credits to turn in that year, and I could not add 1 plus 1.5. I was adding out loud, so when my daughter heard me and I could not put this together, she had to help guide me through what the answer might be. My heart sank – how could I possibly be a functioning adult, single mom, and competent pharmacist if I couldn’t add 1 plus 1.5? I could not walk up the stairs. I crawled. I could not squeeze a sponge or open the top of a milk jug. I couldn’t unscrew the tops of my supplements. I ended up in a wheelchair, basically requiring the assistance of someone all the time.
I had to quit working as a pharmacist because 1. I couldn’t stand. And 2. I couldn’t think. I found myself looking at medications, numbers, prescriptions, and not knowing what I was looking at. Prior to this, I was a whiz at math. All of a sudden, numbers confused me. It was like all of them were being thrown at me all at once and I couldn’t make sense of them. It was completely overwhelming. I didn’t hesitate to stop working because I did not want to harm anyone. At that point, in addition to all the other stress, financial stress set in as well.
I became severely sensitive to light and sound. If there was too much of anything around, my brain couldn’t process it. It would make me want to crawl out of my skin.
I wore wrist and ankle braces day and night, I slept with pillows propping me up and taking pressure off of certain sensitive parts of my body – which of course migrated all night and day. That didn’t make for restful sleep. I might have had 10 or 15 minutes in between sleep episodes which were interrupted by immense nerve pain. I remember one night thinking I was going to die. All of my muscles were cramping up, including my chest and back and fingers and legs and arms – I thought for sure my heart would be the next thing to go.
As I researched online for reversal of Cipro toxicity, all I found were countless recollections of people’s stories about devastation because of their reactions to fluoroquinolones. I read about people who had committed suicide because they couldn’t bear the pain. I read about people who had endured pain for the last 10 years and still had no hope. Back then, there wasn’t as much information as there is now.
I was 45 and had 4 children, for whom I am their only parent. I could not believe my life was going to transform from the most fit and active and strong I had ever been to being crippled, in a wheelchair and in chronic pain. Not only could I not believe it, but after a complete breakdown, I could not accept it. And this is where I began to rise.
Instead of searching for reversal of Cipro toxicity, I started thinking biochemistry and how things work at a cellular level. Thank goodness biochemistry and medicinal chemistry were my strong subjects in pharmacy school. And thank goodness I have a strong understanding of holistic healing. Everything was slightly slower because of my cognitive decline, but I was motivated. I couldn’t let this be the life my children grew up with. Through my research, I started finding basic things I thought would help – my focus was
How do I get rid of the poison in my body
How do I prevent further damage
How do I heal the damage that has been done
As I dove in, I got deeper and deeper into the toxicity of this medication – the mitochondrial damage that takes place, the neurotoxicity, the muscle damage, tendon ruptures, brain fog…everything. And slowly but surely I started finding solutions and healing myself. Not with the help of western medicine who denied anything was happening to me because the blood work didn’t show abnormalities. And for some reason, the three doctors I went to did not know enough about fluoroquinolone toxicity so they had to deny this was a case of it. According to them, it was so rare and only affected one tendon at a time. They put the label of fibromyalgia on it because they couldn’t come up with a better diagnosis code. However, they were quick to offer antidepressants, pain meds, and anything else to attempt to appease me. I declined. I couldn’t fathom the thought of putting another medication into my body to supposedly counter the damage another medication created. With chronic pain and stress, I developed adrenal fatigue – or HPA axis dysfunction, diabetes and migraines through this journey, but I still relied on getting to the cause of these as opposed to Western Medicine to mask what was happening at a cellular level. Even with cognitive impairment, I knew better and I trusted my intuition. I knew I was in charge of healing myself. Thank goodness.
It became my full time job to heal myself. I went from a wheelchair to finally being able to walk down the stairs. I started walking – to the end of the driveway and back. Then to the first driveway over and back. Eventually, I walked all the way around the block. Of course with repercussions, but I did it. And I gained hope.
I did panchakarma, a detoxification process using Ayurvedic practices. I started massage therapy – where the therapist was initially afraid to even touch my tendons because they were so brittle. I did massage therapy 4 times a week. I bought an Infrared (IR) sauna to help me make more mitochondria, since I couldn’t get to aerobic activity to replenish my damaged mitochondria. I did countless detoxes and purifications to clear the poisons out of my liver and body. I changed my diet completely to minimize inflammation throughout my body. I meditated. I meditated. I meditated. It was one of the only things that would give me a reprieve from the immense pain for about 30 minutes. Many, many other things I did…
Along with the alternative practices I used to heal myself, therapeutic doses of supplements played a large role. Had it not been for knowing how my body was damaged, by what chemical components of the medication and probable scenarios of what was going on – I would not have been able to supplement with the things I needed to heal. Healing has been consistently assessing, fine tuning, figuring out what works and what doesn’t work, adjusting to my body’s changing status, and being patient.
I am still healing. I don’t think I will ever be back to 100%. I can go two weeks between massages now. I think it is becoming more of a relaxation and pampering activity for me more than therapy. I’ll keep up with that. I can propel my body and still have energy at the end of the day. I sometimes outlast my loved ones that haven’t been afflicted with this poisoning. I am also able to eat with a little more flexibility and enjoy some of the things I love to eat. In moderation of course. I was recently out of the country and walked 13 miles a day for 7 days straight. I still had energy at the end of the day. I am thankful when I can get out and mow my own lawn. Or hike. Or bike. Or carry groceries in from the car. A few weeks ago I completed the Akron Half Marathon – whether I ran or walked it did not matter – it is something I never thought I would be able to do again.
Also through the healing process, I have brought my fasting sugars down from 200 to low 100’s. It is amazing how the body handles itself when it is not in chronic pain. I am now able to navigate my day with great energy levels and don’t feel so anxious and depressed. My brain works. I feel smart again. Numbers still sometimes confuse me, but I have accepted that not everything is going to be as it was. There are many new normals. But those normals do not include my children having a crippled mom or me being in a wheelchair and for that I am ever so grateful.
Through my experience and research…and most importantly, my recovery…I simply cannot stand by and watch others live with no hope of a better life. I am more excited than ever to reach however many people I can and help them live again. I still read countless stories of pure and utter devastation. It is heartbreaking. If anything in life has pushed me to how I can use my unique gifts, talents, and experiences to serve others, then this is it.
It is a rough hand we’ve been dealt. But you have the ability to heal yourself, given the right tools. I have taken my practice and devoted it to helping those afflicted with fluoroquinolone toxicity or fibromyalgia reclaim their health, their lives, and their hope. Journeywithsujata.com will launch by November of 2017, using my experience and research to find solutions for all of our unique needs. I look forward to helping to be a part of the solution. I’m here. There is hope. Always hold on to that.
Sujata Patel, RPh, RYT
Registered Pharmacist
Certified Menopause Educator
Yoga Alliance Registered Yoga Teacher
Chopra Center Certified Meditation Instructor
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Sincerely and deeply thank you very much for what you wrote. I found your approach inspiring. I want to follow whatever else you write and would certainly be willing to share all the things that I have done that have proven helpful. We certainly have compatible motivations and I feel like I’ve been through several Rites of fire on this FQ journey. I certainly want to follow your blog and thank you so much for what you wrote. Bloody well done!
Cipro messed my neck up and made my teeth fall apart
Thank you Sujata for your story. It is so important for people to take full ownership of this awful journey we go through. It is hard, but we have to research and steer our own healing. I too got floxed in 2014 and feel a different person than I was then. My commitment to health and drive to adventure fully in life increased. The pharmacist perspective is very useful to the floxed world. I look forward to your new website.
I thank God for you! My daughter was 12 when she was floxed for treatment of a UTI. She has been battling for her life since. I can’t wait to see how you can help. She was brilliant, strong and happy. Now she is home bound, was in a wheelchair, and unable to get her mind working. I pray for your solutions to help others.
I get furious when I hear doctors say this is rare. Dr Charles Bennett (U of So carolina) estimated a couple years ago (and I am guessing these figures are very low) that 300,000 have died and millions more been injured by fluoroquinolones.
I see it says on your site you are still a registered pharmacist. How do you square this now knowing that so MANY medications do not actually heal, but rather mask symptoms?
This is so encouraging. Thank you so much for your post and your website launch in Nov to help others like me! I am also 45 and have 4 children and I’m heartbroken and devastated. I’ve lost my job as a registered respiratory therapist and I just want to get my life back and help others thru this as well. Thank you for giving me hope.
Thank you Sujata from the bottom of my heart. After reading your story I felt a smile on my heart. Yes….hope…it is such a beaitiful thing!!
I was floxed in Oct 2016 for uncomplicated UTI. I already was dealing with Hashimotos, Adrenal fatigue and Heavy metal toxicity. I was taking hydrocortisone during this time which I now know only made things worse. It took several months to figure out and accept I habe been floxed.
As I read your story more connections became apparent. It has been a long, hard 13 months. I still am homebound and not able to work. Yes…taking care of myself is my full time job.
I am grateful that you will be sharing more here in the very near future. I need you…we all need you.
You are an amazing light shed upon me during these days of darkness.
Blessings❤
Thank you Sujata for sharing your story. You helped me 3 years go when I was floxed. You shared with me over the phone what supplements would be helpful to me. Through a mutual friend (Nick) I had the privilege to speak with you. Still need neuropathy and back pain healing, otherwise I’m good.
Thank you Sujata….I was first floxed in the late 80’s, 10+++ times over the next years. I had a severe Neuro, CNS breakdown the last time I took Cipro in 2013 and luckily my insurance covered an Neurologist at NYU Langone Clinic in NYC (MRI of Brain) He ruled out things, but no real diagnosis. I also had a bad response to Lariam (a FQ derivative) for Babesia in 2000, with hallucinating and Neuro symptoms. I was never aware of what floxing was. I was diagnosed throughout the years of sickness (from being Floxed…..by the way ……..I got my teaching degree, raised 3 children and dealt with a PTSD Vietnam Veteran spouse ……all the while sick from repeated floxings. Dozens of doctors diagnosed severe Fibromyalgia, Myofascial Pain Syndrome, Autoimmune Thyroiditis, B12 Intrinsic factor issues, Autoimmunity, Extreme fatigue, adrenal issues. Low Blood sugar etc. etc. Throughout it all , I have been very holistic and tried to maintain my faith and stability. I have improved……but hope to look at your new website.
I recently had a highly paid neurologist tell me cipro cant even cause tendon pain it is internet hearsay,what an idiot
well done Sujata youve done well,ive recently bought an infa red sauna hopefully it will help but a bit worried about how many days to use it etc
hello. ive been in the same situations with many people here. Being sick and want to recover from this and just start living more. Im amazed how much you have accomplished and that you want to help others who are suffering. i have been struggling for about four months now and hoping to get better and im hoping with your assistance that i can get better too.
Thank you for sharing! What kind of infrared sauna did you buy?
Hi Sujata,
Namaste. Pretty new floxie and going through really rough times (almost bed bound, terrible pains, can’t even walk and a whole long list of symptoms). It is just great to have someone from the medical community, and no less someone who can understand how these medications destroyed us, to be on our side. Really looking forward to read what you did to help yourself, help explain insights into how these drugs destroy nerves, muscles, bones, connective tissue, why doesn’t the damage stop and what not. There are many studies out there that do tell us how these drugs destroy us, but NO (with emphasis) studies out there to show how to reverse them or stop them. How can these drugs be permitted to be out there like this, when nobody knows how to reverse it or there are no antidote for it? Makes me wonder, if they haven’t even done research about how to reverse it? Most doctors haven’t even heard of these. No health professional has heard of what these drugs can do, including the pharmacist who dispensed it to me. Simply now clue. It is such a systemic failure at so many levels, and is just unbelievable. Its a massive public health disaster, hidden under the surface.
It will be vital to read what supplements you took to help yourself, and what are your insights. I think that you as well do one of the biggest favors to millions with your insight as you have a privileged position through your education to help the floxie community. Of course, we all are affected and damaged with these medications and yet everyone of us is also affected differently. Can’t wait to read your blog.
Sujata,
Congratulations on your recovery and thank you for sharing. I look forward to your new website.
Deb
Sujata, thank you for sharing your backstory, and recovery, and for creating a space where floxxies can soon go for answers. I SO hope you will not charge the beaten-down and torn-up individuals for your helpful information; too many medical professionals do just that- dangle hope in front of desperate folk, then skin them for what little they have left… House payment monies, car payment monies, grocery monies… because the ONLY thing medical info is worth is the patient’s willingness to understand, assimilate, and implement/activate the information. For instance, perhaps you tell them which supplements to take, but they ALSO drink chemicalized tap water with their supplements, ingesting on average 6 to 8 poisons with every swallow of the supplements. MOST municipal water systems add 6 to 8 chemicals/ingredients to the tap water, to render it “drinkable”. That was just an example. Or they buy CLEAN water, to take their supplements with, but in plastic bottles, which ultimately deposits poisons into their systems. I am an RN, no longer able to practice, r/t Floxxed, who has been floxxed many times, but had no idea, because I was TOLD that the medications were safe, and they rarely, if ever, came from the pharmacy for a patient with the package insert included for me to read when I was administering them to others. And physicians never told me what the risks of Flouroquinolones were. I did not know until my own Mother was Floxxed this past Spring and it nearly killed her. Took her mind and body to new, and not-nice, places. She is slowly recovering. Sure, Sujata, charge SOMETHING for your private consultations, if you do it, but make it modest, please. I dealt with breast cancer during the last few years, and there is one “professional who charges over a thousand dollars for a mere PHONE consult! I obviously avoided her. I hope to see individuals helped, not hurt financially. Yes, people need to pay something for your time, and information, because if its free, they will think its worthless, and wont even try it. And Fellow Floxxies, please don’t take Sujata’s information she takes the time to put together for us, and then minimalize it by, say, buying her suggested supplements, then ordering burgers and fries that contain the massive amounts of synthetic hormones fed to the animals the meat came from, or run out and get a pizza with all the MSG in it…and eat it. -DONT, please. EAT well, Eat clean, organic GOD-food. The current fast-foods, even from a bag of a box to prepare at home are essentially harmful, containing poisons. Even the box surrounding your cereal contains bug and rodent repellents. IF you become a student of Sujata’s, FOLLOW all her instructions, because it takes a huge change in habits to clean our poisoned bodies out. BTW, my own doctor tells me also that Flouroquinolone toxicity is really rare, too. Their continuing education is pitiful. THAT is because of, ultimately, the government’s meddling in medicine. We must educate ourselves. But that is another discussion. I’m sure you know that, Sujata, but readers may not. Finally, my favorite physician used to say the solution to pollution is dilution. He was talking about drinking clean water. If you drink a large amount of clean water, say a half gallon of pure water a day, however, please make sure you are getting your electrolytes replaced in adequate amounts while you are drinking.
Dearest Paula, Thank you for your thoughtful comment to my story. I am saddened to hear that both you and your mother have been affected by fluoroquinolone toxicity and that the medical community has not served you well. You’ve provided a lot of insight as to clean food and water, which I couldn’t agree with more. I also agree that if someone is going to take the step to healing, it needs to be a fully committed process. Doing the tough work and making the necessary lifestyle changes saves lives. It gives us our lives back. No amount of comfort food could take the place of that, even when we are in the depths of despair over our changed lives. Also, I can assure you that I am fair and compassionate above everything else, when it comes to my consultations. I appreciate your input. Have you recovered from being floxed? And how is your mother doing?
Hi Sujata,
Thank you for your story. I live near a former pharmaceutical rep. who was poisoned by a FQ and now is a big advocate for the dangers of FQs. He no longer works in the profession for similar reasons. It’s sad that some people are forced out of their livelihood due to health-related reasons while others leave on a matter of principle. Regardless, for a few pills, it is sad nonetheless that people have to change their lives. I also found your story interesting because I had received my toxic dose in a hospital ER for diverticulitis. The pharmacist called to tell me that the flagy pills would taste terrible- and that was normal- but didn’t mention anything about the Cipro. When I indicated that I had read the insert- this was after about 4 doses already- she said the same thing: “That is only for people over 65. If you are in good health (which I was), you should be fine!” Within a few weeks, by body literally crashed. It was “All systems down!” and I have been trying to restore my health and it has cost me a fortune. It’s been a year this month and I am still far from “fine!” I have a doctorate degree and even a year later have difficulty with helping my 4th grader with math homework, following a recipe, word retrieval, etc. I was the “Queen of Multitasking” before but now I have trouble even following simple directions at times. My biggest challenges are the cognitive deficits, the ANS dysfunction, and the vision-related issues. My vision was wrecked by these pills. I have a curtain of floaters in each eye that are just maddening. Even when I try to put this behind me, psychologically, it is so difficult because I have a constant reminder all day of this experience. Can you tell me about the vision related issues you had and if they have resolved?
Hi Sujata,
When you started the infrared sauna, how long did you stay in the sauna and for what temperature? I’m concerned about detoxing too much and getting more unwell. Thanks. Deb
Question re: the “blurry vision” for all who has had it… Can you please describe it? For me, it is like it is blurry in my visual tract and not necessary my eyes. It’s a weird feeling to describe. It’s certainly blurry, but like I’m in a fog or haze around me and not necessarily like blurry vision like when your eyes just need to adjust; although, I probably have that as well.I have about 10 things wrong with my eyes. I’m surprised they didn’t fall out! (Knock on wood!)
Also, for those with light sensitivity in the stores with fluorescent lights- Again, I wouldn’t say it is really all about my eyes, but more about how my brain responds to the lighting. I think it might be due to insufficient GABA, because I used to have panic attacks and no longer do to that extent, but my head will still feel hot and my vision gets funky within the first 5 minutes of being in the light. It’s like my brain can’t protect me from the assault of all the store lights. I understand what you say about the “shade” being pulled over my right eye. It’s like some visual pathway darkens or something in response to the intense light. I get a wierd type of headache and don’t feel quite right for awhile after I leave the store. It’s just like nothing I’ve ever experienced, but that started with the steroids and continued past the Cipro. It has gotten better, but still present. I hope to be able to return to my days of being able to do “retail therapy” and “grocery store” therapy. I’d love to just meander through the stores. It was so relaxing, even if I never bought anything.
I do think it is related to nerve damage within the ANS some place or the optic nerve itself- which scares me. This is what is so maddening because the prognosis is so uncertain and treatment is so nebulous because no one really knows what is going on, let alone how to treat it. The right side of my body seems to have sustained the most damage, but the visual system actually crosses pathways in the brain, so it’s hard to say for sure. Really, the sad thing is that it really is a “wait and see” game. I just hope the worst of it is behind me and it’s just healing from here on out. Would you still say you are about 95% recovered?