*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
Depression/Apathy
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.
Has anyone tried or got any knowledge of the glutathione Life Well patches . See Bobs posting to me.
Hi Erika
This is in response to your posting about the stabbing pain in your eye etc. I understand completely where you are coming from. I reached that stage some time ago and with good reason. I do not think that you are being unreasonable at all. I am glad that your eye symptoms have settled down and that your vision is ok.
Erika–funny you should mention the pelvic pressure. Am going to an integrative gyno tomorrow. Mine has come and gone and some nights it’s so bad I get up to go to the bathroom literally dozens of times. So much for sleeping. And since this started I have felt like I had a UTI at least a dozen times. Only once did I actually have it. The irony is that the UTI I was initially given the cipro for—didn’t even know I had it! Not until the doctor told me the urinalysis showed one. I had ZERO symptoms. Now it feels like one more often than not. My acupuncturist blamed inflammation which I am sure could have something to do with it, but I think it is just more nerve damage, since that is what I have dealt with the most. Beyond annoying.
Linda
It is possible to test your urine at home however obviously you need the means to do so.
Your dr may prescribe the necessary test strips or you may consider buying them yourse;.
.
Signs of infection include finding leucocytes in the urine. If present these are detectable by doing a simple dipstick test at home. That way you can keep a check on what is going on bladderwise.
Don’t be alarmed but there is also a conditio called interstitial cystitis. This can account for your signs and sumptoms of cystitis. This is an inflammatory condition a opposed to an infection. therefore antibiotics are not required!!
Bicarb of soda has helped me in the past as I am prone to acidosis due to medication now.
Putting a hot water bottle on your pelvis may hlp as may keeping to alkali foods and drinks.
Hi Steve, I don’t think my prednisone was in high doses either…doesn’t take much. Here are the IVs I got: Phosphatidylcholine (this is a natural part of our cell membranes, a lecithin) and is used for helping with nerve damage, among other things (it is recommended to get 2o of them); high dose vitamin c (this is way more than you could ever injest—50,000 mg) and it does many things including helping to rebuild collagen; myers cocktail (invented by a dr myers, it contains b vitamins, antioxidents, magnesium, etc again in doses you could not take in orally). I also got H2O2 because I needed to wean off of asthma steroidal inhalers, but it also bathes all cells in oxygen. Some people get ozone treatments and there is a lot of overlap between the two. With the exception of the H2O2 I got all IVs with a “push” (like a shot) of glutathione, which is the granddaddy of antioxidants. Oral pills are a waste of money because by the time they are digested, they can not make it through the cell wall where they need to go. Glutathione is immensely important to floxies.
Need to clarify re oral pills—was referring specifically to the glutathione. Here is a random site I found that explains a bit about IVs http://www.pacificnaturopathic.com/iv_vitamins.html
Thanks for the info. Wish they were closer to home.
No problem at all. I have tried so many different drugs that I forget what they are and what they do.
If you can find it online, Mondays edition has an article on turmeric curing tuberculosis. Newsmaxhealth.
Dear Steve
I am sorry to hear this. Please do not trouble your daughter about this.
I hope that your daughter is okay now.
Obviously I also wish you well and I apologise for troubling you.
You are not troubling me. I have asked her to post the list plus some comments she had posted. Be patient (her patient – lol) Also, her problems have been long term, but sometimes (like last night) they really flare up.
Oops, its noon in Minnesota, time for my nap. Talk at ya later.
Steve
Thanks for your reply Steve. It really does help to be supported etc.
Hope u have a good sleep.. See ya later.
Cindy
well, Erika, first I saw a neurologist who thinks it is interstitial cystitis. But then the gyno, after the exam said she thought it wasn’t that. I said “so you think it is just nerve damage?” and she said “yes, maybe.” So still nothing definitive. It’s so weird. A couple days ago it was so constant, and sooooo much pressure. Today? Not so much. My gut tells me ‘nerve damage.”
Linda, thank you for sharing. In my case, I already had this pressure thing before the antibiotic and the antibiotic only made it worse. However, it is getting better. My sister who is interested in homeopathy also is having female issues and said she takes a combination of three teas almost daily. I have been drinking this for two weeks now and it has helped. You can buy them in the health food stores, and depending on where you are, in the grocery store. They are: Sweet cinnamon spice, Healthy Cycle, and Pao d’ Arco. I put a bag of each in a soup bowl size mug and let it steep for 10 minutes. It is very aromatic and I find it easy to drink. I don’t even add sugar. Anyway, I find it soothing and it has helped with the “imflammation” feeling which was also causing some achiness in legs. That is much better now too. I wish you the best in your recovery.
Thanks…I actually had written down pau d’arco the other day but couldn’t find it in the store. will jot down the others. I also take herb pharm’s urinary system support and that seems to help a bit..I think it is the uva ursi ingredient
If I wanted to try a colon detox where would I go and what would I ask for?
Marlene, Sorry I just now saw your post. The one that worked well for me was by Garden of Life. It is called Perfect Cleanse. You will probably find it in your local health food store. You may even find it in your local grocery chain if they have an organic section.I believe part of the reason it worked so well is that it uses 600mg of magnesium to gently remove waste from your gut. As with all things, I would check out the ingredients first to make sure there will not be any interactions or possible issues with any meds you are taking or other conditions you might have. I only know I tolerated it extremely well. No cramping, but there was an almost immediate significant relief from almost all of my lingering symptoms. As I believe that floxies should take these things slowly and over time, I am waiting until the fall to do another one, since I don’t want to over tax my body. I have completely recovered now with just a twinge of something here and there which honestly I don’t believe I can attribute to the antibiotic anymore (after all, I am getting older). I hope this helps.
I, your story it´s like my story, I take Cipro, 2 pills 500mg a day, in 3 day a bomb explode in my body, i felt all the symptoms, a i have tinnitus even today, its slow down, but continues, i take a lote off supplements but i think Magnesium Threonate was the best, i am recovery totally, but i think my body and my mind never will be before cipro, a take in Lorazepan to sleep one year, the withdrawal symptoms was another fight, so today a do a normal life, don´t take medicines or supplements, i sleep 8 hours a night, and i am feel fine, Floxie Hope was an important support to my recover, the time is the best advice, the recover never happen faster.
Sorry my english.
Great news. I too had to take loratadine for months, but weaned myself off. And I know what you mean—doesn’t seem like I will ever be where I was pre-Cipro. (and your English is fine.)
GRRRR. Oh Cindy, I get so upset when I read your posts about the abusive doctors. I do NOT know of any NDs who do phone or online consults. I would find one there though (UK right? I am in the US) and forget about MDs for now. When I tried to get my OWN records from one, he refused, which is a violation of laws we have here. I tried a few more times and he too threatened to call the police! I think he was hugely embarrassed at having finally “seen the light” and regrettting his unkind, ill-adviced comments about me in his records. The doctor who threatened you with that sounds like a real jerk, and I am guessing either grossly ignorant and/or taking pharmaceutical money. You could file a complaint with your medical board, but if it is anything like ours, they want other doctors who support your side. ARGH. Like one big secret club. Anyhow, I found this resource for UK NDs http://www.naturopathy-uk.com/resources/practitioners-directory/