Post #1 –
I had been very active on this group until I made the decision that reading about so much suffering was more than my psyche could handle.
It all began back in April 2013 after a three week therapy of 500 mg twice a day of Cipro. My life changed in so many horrible ways they are too many to list. Fear, terror, the PN symptoms were indescribable. My whole body was compromised, my mental state was extremely fragile. I experienced so many moments when I did not believe I could deal with it all one more day. Every new symptom threw me into a tail spin that I believed was going to end with my crashing and burning. Every day was a 24/7 attempt to hold myself together. Be able to work, function, not lose my mind. Being around me for my family (especially my wife) friends, co-workers was truly a drag, a huge downer. But only those of us who have lived the nightmare can truly relate to that of which I speak.
So many of you told me that with time my condition would improve. Words of encouragement were so very much appreciated, but for me it was difficult to believe comprehend. The stress of my FQ poisoning and everyday life (especially a very stressful profession) had me stuck in an extremely high level of fear and anxiety that I truly feared I was heading toward a nervous breakdown.
Through all of it I have been extremely proactive in seeking help that could get me to a better place. Traditional medicine and all the tests ,changed nothing, but only confused me even more. Homeopathic practitioner, an Acupuncturist with a long and successful history for treating pain symptoms (and more) and competent masseuses and a Psychiatrist helping me with anti depressant, anti anxiety medications (although I would rather not be taking any) have all contributed to my improvement and a sense if relief. I still have a ways to go after 10 months and I know not if I will ever be back to my pre FQ poisoning, but I do remain optimistic. Exercise which has been at the center of my daily life had come to a complete halt, I have been on our Elliptical machine several times a week and seem to be tolerating the effects of this form of exercise. What I have learned over these 10 months is to not lose hope, to search for alternative forms of treatment which may help, bring one back to a more tolerable state of daily life. I hope that my sharing may bring some sense of hope to those who have just joined this group and to those who are still struggling with their own FQ disaster.
Stockdale’s Paradox: regardless of how horrible our circumstances, how incredibly our present condition, we must persevere, must believe that we will survive, overcome, Keep the faith, do not give in, give up. You too will have your own story of healing to share.
Lisa’s note – I asked Stu to let me know in about a month if he still felt ready for me to post his recovery story. About a month after he posted the story above, he sent the following update –
Post #2
It has been about a month since I last sent Lisa an update. Now in my 11th month of having been poisoned by Cipro 500 mg twice day for three weeks. I did not believe that I could truly survive the symptoms of PN that I had been left with during the first four months of their onset. The burning and coldness and pain in both of my shins, calves and feet were indescribable. There truly were days when I did not believe that I could make it through another day of my life as it had become. The stress related to constant worry and fear led to a level of anxiety, that in itself had been making me even more ill.
With the help of a psychologist and psychiatrist and some medication (cymbalt 30mg, 1 mg clonazepam and 25 mg elavil) I was able to get my anxiety under control. And having been unable to exercise after a life time of running, biking, nyc marathon, triathlons, etc. (which I had participated in for 33 years) being brought to a dead stop added another level of a daily existence which was hard to digest. I listened to others in this group who told me to keep the faith and things will get better.
After seeking help from an endless list of traditional medicine docs and tests and than turning to a Holistic practitioner, I have now been for 13 acupuncture treatments (trigger point needling, qua sha, and cupping) in conjunction with visiting once a week a masseuse that is doing deep muscle massage treatments.
I would like to say that I am 100% better, but I truly don’t know if I will ever get there. I am on my Elliptical machine 3-5 days a week (this activity has seemed to be the least bothersome to the symptoms I still have). Twitching in my calves, some soreness and low level pain in both feet and a coldness in both feet that just seems to not want to quit. However, I am so much better than I had been many months ago and remain optimistic that I will continue to improve. For those of you dealing with your own personal struggles, don’t give up hope. Remain positive, believe that you will get better. Going down the road of dark thoughts (as I found out myself) only makes you feel worse.
Stockdale Paradox ” Retain faith that you will prevail in the end, regardless of the difficulties – and confront the most brutal facts of your current reality, whatever they might be”.
Stu, I have been 6 months free of Cymbalta and it is a hell all of its own. I am glad you are doing a bit better but only feel it right to warn you of the terrible side effects of Cymbalta as well. Be careful with it and NEVER miss any doses. The withdrawals are horrible! I am still suffering 6 months later. They say it could be up to 2 years before I recover. And yes I was floxed too. Good luck and God speed my friend. Praying for you.
Hugs not pharma drugs, Mandy
Stu keep going I got through 30 scripts of cipro with a lot of problems, though I know we are all different.. The 4 scripts of levaquin blew out my nerves all over.. I sure know the torture.. I don’t know if you had the all over stinging and frozen feet, (I hope not) but if you did , did anything help that part.. The rest is coming along so so , has been two years.. but the nerve damage is severe.. I pray you continue to get through,, I feel you will, do expect peaks and valleys as I did with the cipro for a long time but I made it through a lot of cipro poison..
I hope you never lose hope. I was floxed with four weeks course and since then my life looks completely different. I was a basketball player , but then I took cipro I have not even been able to run short distances. Terrible pain in joints, muscles and tendons around the clock. Do not even talk about anxiety and depressive symptoms. 13 months of hell which I thought would never end . A month ago I diagnosed myself and discovered that I have candida as a result of cipro cure . Since then I’ve followed ironed diet excluding meat, fats and vegetables . It has given me great effect against depressive symptoms and reduced the pain a bit. I know that many in the cipro group has written some about this but it really is worth a try if you have not already done it. I pray for everyone out there who suffer from these horrible symptoms. Never give up. Do not allow the Codex Alimentarius win over us. Spread the message. Share you story , Warn everyone you know – I do. Hugs and kisses
Rectifying “Since I’ve Followed diet Which only included meat, fats and vegetables”
Hi Stu,
Charming photo and wonderful story 🙂
your story Certainly give help to those who took large doses and wonder if they got healed eventually. you told them and me yes!!
do you take any supplements during this tough time?
Jarene
Thank you Stuart for sharing your story. Out of all the information available on the internet about fluoroquinolone toxicity I find stories like yours the most helpful and inspiring. I too was given Ciprofloxacin in conjunction with steroids back in April 2013 and I am still struggling with daily life- some days and nights being worse than others. Im only 48 years old and have gone from leading a very busy full on life into daily survival mode. It’s tragic but it’s what it is and I too hope we will eventually recover. I find the pain at night horrendous as I can’t lay on my back or right hand side of my body and my right shoulder is weak and painful whenever I use my right hand or right arm. It’s the uncertainty of not knowing if you will recover I find distressing as until now I’ve always been in control of my life- taking one day at a time seems to help. Good luck and please keep in touch.
Stu, while I’m happy to see that you’re feeling better, I’m upset to see that you have just replaced one CNS poison with three new ones.
The psychiatric drugs cause EXTREME damage to the CNS and the symptoms of withdrawal from them are VERY SIMILAR to Cipro toxicity. (If discontinued improperly, they can cause suicide, psychosis, seizures and death. I am currently bed and couch-bound for 3 years and 5 months with a severe withdrawal syndrome from benzodiazepines and “anti”-depressants myself.)
I hope you know that you have to now spend years tapering yourself off of the psych meds properly to avoid years of protracted withdrawal syndrome from them b/c they alter the brain and CNS when taken long-term. Please join a psychiatric drug withdrawal group and learn how to taper BEFORE you start when you’re ready to come off of them or you will have a nightmare on your hands that rivals your Cipro problem and can cause years and years of tortuous withdrawal symptoms if not done properly.
I don’t know how a group of people can so adamantly protest an antibiotic and the pharma companies who make them and then turn around and ingest MORE pharma poison that only damages the brain and CNS further.
http://www.survivingantidepressants.org
http://www.benzo.org.uk/manual
I hope someone will get this information to Stu before it’s too late.
Stu, I hope that you don’t feel ganged up on about the Cymbalta. The people who have suffered from adverse reactions to psychotropic drugs are just as passionately against them as the people who have suffered from adverse reactions to fluoroquinolones. Understandably so. Whether or not to be on antidepressants is a highly individualized, personal choice. I know that people have very legitimate reasons for being on them, and people also have legitimate reasons for hating them and fighting their use. If you decide that you don’t want to be on them, please be careful with quitting and taper off of them slowly.
When I said that my acupuncturist saved my life (https://floxiehope.com/2013/12/05/saving-the-life-of-a-floxie/), I meant it. And what he did more than anything else was he reduced my anxiety. I took some Chinese herbs that calmed me down. The acupuncture needles helped as well. My relationship with my acupuncturist is a bit complicated and there were other areas in which he saved my life too, but the main treatment thing that he did was getting rid of my anxiety. Also, the Mindfulness Based Stress Reduction class that I took through Kaiser Permanente helped me immensely. I recommend it – or any other meditation course.
Getting rid of anxiety is necessary. The “alternative” methods have fewer side effects.
Be careful, please. And you need to do what is right for you. I hope that you don’t feel ganged up on.
Best regards,
Lisa
Stu I saw your story on Pinterest and it took me to this site. I am thankful that you posted your story. Though I have not been able to read the same as I used to and I am a reader.
I took Cipro 500mg for pink eye and sinusitis and bronchitis. Been I cipro before. So no worries huh. I got floxed. started in my left foot and between my toes and then like a bomb hit me in my knees and ankles. Can’t sleep like I used to. I am in no way the runner like you. But I used to love to walk all over Nature walks are me and my wife’s thing.
I am going to see an orthopedic next after many shots and a blood test and urine test.
I think after this I will seek help at a Clinic called the Born Clinic.
I am not a hateful person and I realize I chose to take this medicine. But I am tired of big businesses making money of the lives of innocent people. Big drug companies have allot to answer for.
The fact of the matter is we live in an imperfect world run by imperfect people. And as the Bible book of Ecclesiastes says “…that man has dominated man to his injury.”
It also says in it somewhere the evil you do will return upon your own head.
I am a bit gun shy taking anything anymore. Why in the world should I take a pill that is made by the same company that makes herbicide! (Bayer)
I am glad you are feeling better Stu. When I read your story I know there is light at the end of the tunnel.
Keep inspiring so others do not give up.
Thanks again my friend.
Michael
Stu . I to had cold numb feet for a long time I stopped eating gluten and after about a week it cleard up . To this day if I eat gluten my feet will go numb . Never had a problem with gluten before . I am 12 month out . I was having sever anxiety attacks after seeing a army of docs they fingered out I have a fib. My heart will flutter makes me feel like a bear is chasing me . Now I no what it is I can deal with it . We have all been down are own rd to recovery . You will make it . These are thing that I found work for me you might give it a shot .
Hey Stu,
Could you tell me how many days after the last pill the symptoms started?
And did they get worse or were they full on from the start?
Did you take magnesium, if so in what form and dosage?
Regards,
Mark
Stu, how are you doing these days? August 2015. My symptoms are very similar. I hope you’re are well, my friend!
Did you have a hard time getting the doctors to believe it was related to the drug? I am only now linking the tendon issues I have to my Cipro. I had 3 UTIs over the course of several months. Each one being treated with Cipro. Now both shoulders have tendon issues, I have a torn Bicep tendon and multiple tendon issues in rotator cuff. Shortly after taking them, I had ankle trouble(not achilles tendon) but the front part of my feet and both hands. I’ve been to a Rheumatologist to rule out RA. Unsure if it is the Cipro or just bad genes.
hello lisa ,new to the site. how do i contact you with a few questions?
Is it OK to take Xanax for symptoms of anxiety when this happens?
I was precise levaquin 500mg in February this year and have been going through hell ever since , multiple meds, doctors, tests ,acupuncture. I have lost weight and muscle tone not to mention the fear, depression and anxiety.HELP
Thanks Lisa,
I have been doing a lot of research on my own, I had a heart attack in 2006 and was prescribed 40mg of Lipitor. which I have taken for the past ten years.I have since found out that it contains fluoride, as does the medication prevacid. Which I took for acid reflux our municipal water is treated with fluoride.I am sure that with these combinations and the introduction of levafloxin it has caused this health nightmare?
Stu, how are you now?
you healed … completly?
HI Stu, I too would like to know how you are feeling today. Are you better? I am still trying to get rid of PN symptoms after a little more than 16 months out from taking Cipro 2-500mg a day for 10 days. I feel I am on the mend, as I am doing so much better, but just wondering if the Small Fiber Neuropathy or whatever it is, will ever completely go away.