*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
First off, I want to apologize for the length of my story. I have tried to include only what I believe is important, but this has been an interesting journey. I will start my story by first giving a little background. I am not an athlete. I do however spend 26 – 30 hours a week on my feet at work. I also exercise 4-5 days a week which includes at least two yoga sessions. I have extra weight on me which I I can’t seem to lose, but I do my best to stay fit. Also, the past several years I have been eating organic whenever possible and taking only vitamin C and some magnesium. I regularly see a chiropractor and get a massage once a month. I was also doing a colon detox about once or twice a year. I am 51 and before I took the Cipro I was experiencing some perimenopause symptoms, i.e. hot flashes, mood swings, mild anxiety etc. but I was healthy. I was managing these well by taking black cohosh at a minimal dose and intermittently, only when my condition warranted me using it. The reason I am even mentioning this is that I want to be absolutely clear that I know what a “normal” hot flash, mood swing or anxiety attack for this time in my life felt like (for me) as opposed to what I experienced after Cipro.
My story begins on June 22, 2015. I had been having some minor gut issues for a few weeks which I attributed to taking a type of magnesium that did not agree with my system so I stopped taking it. After a bit of research much later after the Cipro, I came to realize that I had not been replenishing the flora in my gut after the cleanses like I should have. So, I ended up in the ER with a fever that spiked to 102 degrees in a matter of hours. I had a high white blood cell count and after a CT scan, the practitioner was very much relieved to be able to tell me then that he had found the beginning of a very mild case of diverticulitis in a small area of my sigmoid colon. I was promptly given an oral dose of both Flagyl and Cipro. I was to take 500mg of the Cipro 2x daily and 500mg Flagyl 3x. My mother who was with me still remembers him saying that even though it was a really mild case, he really wanted to kill it before it could get worse. My fever by then had already dropped back to almost normal with a dose of Tylenol.
So, I went home at 3am and promptly went to sleep. About an hour later, I suddenly wake up with the worst heart palpitations and erratic heart beat that I have ever experienced in my life. This was also accompanied by a terrible feeling of anxiety that I can’t even describe. I did not connect it to the antibiotics at all, but thought it was a terrible panic attack due to stress from the ER experience. I simply lay back down and spent the rest of the night tossing and turning with all kinds of horrible dreams and thoughts going through my head. The next day, I took the normal dosage of both antibiotics and was fine until that night. After going to bed, again I woke up with the same experience as the previous night, but this time I was sweating buckets and shivering with cold. This was crazy! The anxiety had also increased about 2 fold. The next morning I go directly to urgent care without taking another dose. The doctor there told me not take anymore of either antibiotic and he put me on Augmentin. He said if I remember correctly that he thought it most likely that the Cipro was causing my reaction. I was ok with Augmentin, because I had taken both Amoxi and Penicillin in the past without issues. I was given a 10 day supply. I was totally fine until my 2nd to last dose when I broke out in hives. I did not take the last dose. The hives disappeared within 3 days and I felt fine. A few days to a week after that (I can’t really remember) I started having intense waves of pain wrack my body after I went to bed. It was like hot lava was being poured into my head and cascading downward through my body towards my feet. I could even see my muscles ripple as it went. Then the wave would start over again. I thought I was going to die it hurt so bad. This would happen almost every night until 3 or 4 am in the morning. I would get up and go sit on the couch for awhile and that seemed to help a little. Somehow, I survived until the next morning. This was not a hot flash. I kept expecting it to go away on its own. I somehow knew that no doctor would believe me and besides, I was afraid to go in. Along with this, there was intense anxiety which I am sure the fact that I was getting no sleep was not helping at all. After almost a month of this, I was speaking to a nurse practitioner friend at church and she felt strongly that it might be a hormonal situation. She had me come in. After asking me some questions, she had me go on bio-identical hormones to see if they would help. She also had me take a blood test which came back with a very low ferritin (iron store) level of 9, and Vitamin D level of 18. I was not considered anemic though. I was given a prescription of Irospan (Iron with vit B complex) and 10,000 IU of Vit D (10 days). The supplements seemed to help. The hormones, not so much. They helped quell the intensity of the night time tremors that I had been experiencing, but my anxiety got worse along with the insomnia that was now appearing. I simply could not go to sleep. I could not even take a nap. It wasn’t because my mind was racing with thoughts or anything like that, I simply could not sleep. We could not find a dose that worked at all for me. By now I was having all kinds of additional symptoms. I had severe dry mouth, dry eyes and my sinuses were starting to feel inflamed all of the time. I had no appetite, I ate soup most of the time or drank milk. I did eat some solid food but it was hard to choke down. I lost 25 pounds in a little over a month. Then the intense random electrical shocks started, pretty much everywhere. I got off the hormones pronto after one month of having been on them.
I decided to try black cohosh in an attempt to ward off any hormonal issues. After a week, I noticed that the electrical shocks were slowing down, I was able to sleep a bit again and my anxiety levels were going down a bit. It sounds weird, but I discovered later that recent studies have shown that black cohosh does not actually influence the estrogen hormones themselves, but the estrogen receptors. After doing further research on Cipro, I happily found Floxi Hope which was a relief since it focused on the positive solutions which I really needed at this point. I have included a list of most of the other symptoms I was experiencing by now below. Based on what I saw, I asked my chiro if he could suggest a good magnesium supplement that I might tolerate. He did and that helped me even more on road to recovery. Then in Jan 2016, after a round of weight lifting, during which I felt no pain nor did I experience an injury, my left wrist started swelling and became increasingly painful. After two days of this worsening, I went to urgent care where I was diagnosed with Tendosynovitis. My arm was put in a splint which helped a lot. They had me take Aleve for pain, which surprisingly I tolerated well. Three days later my arm and wrist were completely normal again. My chiro did not agree that this was normal. This was the only major tendon issue that I experienced. However, since then my upper chest/sternum area started bothering me. Even the skin in that area was painful. I basically just wait it out and it comes and goes in cycles. But each cycle is less intense and shorter. I am extremely fortunate. Through trial and error and helpful suggestions from friends and family, I found a few other products that together helped me immensely. I have listed them below. I have also listed some things that did not work for me even though they have worked for others.
Currently, 9 months later, I consider myself to be 95% recovered. I am back to my normal exercise regime, and even though I sometimes feel like a 90 year old when I get up in the morning, I am grateful every day. My heart goes out to all of you who have suffered and are still suffering so greatly. I hope that even though what I have experienced is nothing compared to what many of you have and still are experiencing, that you will find something in my story that will help you. I will keep you in my prayers.
Other Symptoms not mentioned above:
Stomach/abdominal discomfort (especially the area just below my ribs
Sharp pain in my groin/lower abdomen area.
Occasional slowing in the esophagus when I eat, slightly uncomfortable
Severe noise sensitivity, especially to certain sounds
Confusion/Short term memory issues
Funky peripheral vision (like a black blob appearing in the corners of my eyes)
Temperature sensitivity, mostly to heat (skin feels painful)
Symptoms that I am still experiencing (to a very manageable degree):
Insomnia: just 2-3 days at a time as opposed to a month
Shooting pain: every so often as opposed to all the time
Tendon pain: occasional forearm/wrist, fingers are slightly stiff and painful in am, did not have this before
Anxiety: mostly later in the day and evenings, sometimes I still feel like I want to jump out of my skin, did not have this before Cipro either
Temperature sensitivity: still to heat, I am able to ignore almost all of the time now
Stomach/abdominal discomfort: to some degree but can ignore it most of the time
What did not help:
Valerian root : made me anxious, caused worse insomnia
Visiting too many web sites that focus on negatives
What did help:
Essential Oils: I use for aromatherapy only. Mostly at night. Lavender is one I use all the time. I had to experiment with different brands though as I have a sensitive sense of smell. I place a combination of various oils including lavender on a cotton pad on my nightstand.
Calms Forte: A homeopathic remedy that works for me to calm my mind when I have had a stressful day. It is the only one that has consistently worked for me so far. Sometimes I use it for 2-3 nights consecutively before my mind finds its own way again. I have only had to do that rarely anymore though. I can’t use sleeping pills, they affect me adversely in most cases.
Sound Machine: Provides soothing sounds like rain, brook, crickets, etc..for sleep at night. It helps my mind to relax and has a volume control that I can turn down when needed.
Massage: during my first three months (my worst), every two weeks. Helped me immensely.
Chiropractor: twice a week religiously
I prayed a lot, and I mean , a lot!
Try to laugh whenever an opportunity presents itself, at least daily.
Rest: There were days when I was not at work that I would give myself permission to just rest because I was so tired. Find your balance and listen to your body.
Stay as active as possible (but don’t forget to rest): I continued to work throughout my whole ordeal, even though I was so sleep deprived, I felt like a zombie. Exercise to whatever extent you can. Especially yoga, going out for slow walks in the sunshine
Fun activities: at first I had no more interest in anything, even watching movies made me anxious. Later, started getting back into reading and progressed from there. One step at a time.
Routine: I found it soothing if I could do something that I knew before. Going to church, even if I wasn’t mentally there helped. Going to work (if you can), doing something at home that I was used to. Again, one step at a time.
Magnesium: I take a complex, malate and citrate. Works on two different systems in your body. It really helped me
Vitamin D3: I now take 5000 IU 2x /week
Vitamin B complex: I take 3 times a week
Vitamin C: every day 500mg
Black Cohosh: I usually take for 1-3 months (depending on symptoms), one every 2nd day. Then I take a break so my body doesn’t depend on it. Has really helped significantly with anxiety, shooting pains
Collagen cream with Vitamin A & D: I use it mostly on my chest and sternum area. Very soothing and feels like it is helping with the healing process. Smells good too.That area is consistently improving
Arnica Gel: When I notice an area (wrist, forearm) where the tendons are getting sore or inflamed.
Detox: In February I did a 10 day colon cleanse that contained 600mg magnesium. It actually really helped lessen my lingering symptoms a great deal. They have been much more manageable since then. I still experience flares, but they are much less intense.
Probiotics: I currently take one that contains 13 strains including S. boulardi.
Most importantly: Stay focused on the improvements, no matter how small. Don’t look at the big picture, but take one little step at a time. It helped me to know that God would see me through, no matter how bad it got.
May, 2016 update:
I feel I can now say that I am fully recovered. I am back to my normal if not better than normal exercise schedule. I feel stronger than I did before I was poisoned, possibly because I am now taking better care of myself. I still take Vitamin D3, Vitamin B complex, probiotics and iron (because my ferritin level is still low). Magnesium is still on my menu too. I now feel that I was deficient in these things before I reacted to the antibiotics and with the exception of the iron, will stay on them for the rest of my life. I am really sleeping again, better than before too. Anxiety and panic is totally gone now too. God is good! Every now and then I feel a twinge of concern over the future and how the potential underlying damage may affect me as I get older. I immediately push it away as I realize that this is a normal reaction for anyone who has had a severe traumatic experience. I can choose to either succumb to it or to grab life by the reigns and live each day fully. I choose the latter. Even though my experience has not been nearly as severe or as prolonged as many of you, I pray that my story will bring hope that things will get better and that recovery is possible. I am now in the process of planning a Baltic Sea cruise in September. Life, here I come! I keep all of you in my prayers.
** 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, affect 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.