*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.
Tamara’s Recovery Story – Cipro Toxicity
On February 4, 2014 I went to the hospital with pain in the flank of my back. Having had suspected kidney stones and a couple kidney infections in the past I knew to head to the doctor right away. When I got there, they did blood and urine tests but did not find anything. They gave me an iv with Ceftraxione (non FQ antibiotic) and sent me for an ultrasound the following morning.
The ultrasound showed nothing on either kidney or my bladder. When I went in to get these results the doctor was quite rude to me, and barely looked at me at all, but made a fateful decision to send me home with a prescription for Cipro. 500MG, 2 times a day for 5 days.
I went home and took the first pill that night and went to bed. In the morning I woke up and took the second pill. My right leg began to swell. I then began to look on the internet for adverse reaction symptoms. I had an allergic reaction to another antibiotic called Azythromycin a year and a half ago, so I wanted to find out what I was up against. What I found horrified me. I started hyperventilating, basically freaking out, big time. I called the hospital and told them I thought I was having a reaction to the Cipro and I had read on the internet what could happen and the nurse laughed at me…a lot of help that was. I stopped taking the Cipro after only those two pills.
Two days after this happened, I was to move to a different province of Canada, where I live. I had previously been a dancer since I was 3. I had danced professionally for 10 years at this point and had co-owned a performance artist agency for the last 4 years. 5 days before I was floxed I had signed over my co-ownership to my two partners and had intended to move and pursue a new passion of teaching a healing dance system called Wu Tao. I was to start my training for this right away. I went ahead with my move.
2 days after my move, so 4 days after being floxed, my leg began to swell so much I went to the local emergency room. They tested me for blood clots and nothing came back. I mentioned that I thought it was the antibiotic but was looked at like I was crazy.
I decided to do my own research and I implemented some things in the very beginning that I think may have to do with my fast recovery.
1) DETOX DETOX DETOX! I began to drink a whole pot of Dragon Herbs Longevity Tea everyday for the first couple weeks. As I understand it this tea has saponins which help essentially “wash” your system. I had many detox symptoms from this. I also used the Dragon Herbs brand Schizandra and Goji tincture to help protect my liver during this time.
2) DIET I had already eaten a mostly vegan diet but in the first few weeks I really cleaned up my diet. No processed foods, no sugar. As many fruits, vegetables that I could get into my system I did.
3) No excess supplements. I did at the beginning take many supplements and I had pain over the area of my liver which led me to believe that my liver was being overworked trying to process so many toxins. I pulled back and only took what was absolutely necessary until I felt I had detoxed enough.
By about 3 weeks in, my leg was in such excruciating pain and so tight that I could not straighten my leg. Devastating for a dancer.
I met a naturopath who was trained in Myofascial Release. He began to treat my leg in the 3rd week of floxing. Slowly, over the next few weeks my leg began to release it’s iron grip.
At 7 weeks, I suffered a setback. I developed new symptoms. My left arm all of a sudden swelled up. I developed severe insomnia and panic attacks. I developed tremors, which did not stop all day and night, adding to the insomnia. I would get burning and shooting and electrical shock pains through my body.
I do believe there is some truth to the idea that the FQ’s get stuck in our tissues and as my naturopath was doing Myofascial Release he was releasing it into my system and causing other systems and processes to become affected.
It was at this point I started to add in other supplements again and I also started getting Gluathione IV’s from the naturopath.
Supplements I took:
1) Probiotics
2) Greens Supplements (Vege Greens but Greens+ is also good)
3) Protein in the form of Vega shakes
4) Magnesium pills and transdermal
5) High high dose vitamin C 4000 mg a day
6) CoQ10 and Omega 3-6-9
7) B Complex Vitamins
Glutathione was my magic bullet though. After my first IV I began to be able to straighten my leg. After the second, all of my neurological symptoms such as tremors and insomnia and panic attacks went away COMPLETELY.
I did do some physio but it seemed to flare up my condition. I held off on the physiotherapy until just recently.
At 99 days into floxing, I started to WALK 🙂 I had been on crutches for the entire time, and I also was thankfully able to spend my entire floxing on bed rest. I think this made a big difference as well in how much my body was able to heal. If you can, take as much time to rest and let your body do it’s thing.
I am now at 106 days post floxing and I’d say I’m 97% better. I have been able to walk for a week. Physio measured my Achilles tendon last week and it was at an 85 degree extension while my good leg was at a 100 degree extension. I have a slight limp and I still need to build muscle.
However, I am able to drink alcohol, eat whatever food I want at this point, and my leg does not flare up in pain or swelling anymore.
I am not dancing quite yet, but I do believe I will be VERY soon. For now, I have taken to hula hooping!
I believe I will make a full 100% recovery at around the 4 month mark post floxing.
Do not give up, keep a positive attitude, imagine healing for yourself and trust that your body knows how to fix this. You CAN get better!
** 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.
Hello I am doing well and have since had my daughter in 2015…I have pain in my right leg but very rarely. All things considered I am doing well. I even started performing (dance) again
Hi
I read these stories I could relate to the symptoms
I can’t sleep , I can’t work . Every doctor and close relatives say it’s just tension and anxiety
It would be great to talk to a person that understands. Please I am at the lowest point of my life , will really appreciate your help.
I started having the same reaction to cipro 5 days into the course (500 mg) and stopped taking 3 days back . Would really appreciate your help to counteract the toxicity as early as possible
Please reach out to me at abhikumar93@gmail.com
I’ve been living with FQAD since 1998, but didn’t understand that I was until late in 2016. Thus, I’ve lived many years of not using nutrition, supplements, and movement that would be supportive of my symptoms improving, so by autumn 2016, I was almost completely bedridden. Since discovering what fluoroquinolones do, and how to minimize negative symptoms, I have been slowly recovering. I had one huge setback, at the beginning of 2018 but now I’m on a recovery track again. As an older person who is still partially disabled, I’m grateful that you mentioned Wu Tao, because I’ve been looking for fluid movement techniques, especially dance-related ones, that will help me improve strength, proprioception, and flexibility, without too much risk of overwork or soft tissue injuries. Blessings to you, and thank you for sharing your story. I came to your entry via the Facebook FQ toxicity group. Thank you for your generous openness.
I was Floxed about a month ago and have tinnitus. Did your tinnitus improve over time??
Hi Tamara – now that it’s been several years how are you doing? Still good? Still dancing? No problems running and jumping? Any flares?
Dearest Tamara, I am Dan Jervis, the last one on the long list. Would you please consider sharing your story to CBS 60 Minutes? 60m@cbs.news.com
WE NEED OUR STORIES TO BE HEARD, Dan
Please tell me who treats this. We live in New Mexico and no doctor will diagnose this. We believe this is whzt is happening to my mom. Thank you!
There is no ICD10 code so you cannot get a diagnosis. Without a diagnosis the doctor cannot treat you. Insurance will not pay if there is no diagnosis. Fluoroquinolone Associated Disability (the term coined by the FDA) is not a diagnosis any doctor can give you. Without an ICD10 it does not exist.
I have found treatment but I had to pay out of pocket. The doctors I have seen are not part of the mainstream. They do treatments like IV Vitamin C and magnesium and frequency specific microcurrent. Be advised that protocols that work for one floxie can make another much worse. Even if you go outside the mainstream for treatment there is no standard treatment that works for everyone.
If you look for doctors who do things like FSM, Meyer’s cocktail IV’s, and ozone therapy you will likely find doctors who are more likely to accept the damage was done by an FQ, but this does not mean they know how to treat it. Even if they treated floxies before, what helps one can harm another.
The Ancestry DNA test provides valuable information. There is an app available through this website: https://mthfrsupport.com/ that will allow you to run the info from the DNA test through it and find out some things. If you need more the creator of the app, Sterling Hill, does consults for a very reasonable fee. She provides a fifty page report. You take that info to your practitioner to guide treatment.
So if you find docs in your area doing treatments you do not normally see, that are not covered by most insurance, and then find one willing to admit it is FQAD, you can take the info from Sterling to them to guide treatment and avoid the backfires that have nearly killed some floxies. This is the only safe way.
That being said, I did the “throw everything against the wall and see what sticks” approach and I am doing ok. But if I were just starting out today fighting this monster I would get the DNA test and find out what I was dealing with and specifically what my body needed.
It costs a lot of money to treat FQAD, since insurance is not going to help you. Most people get better with time and there are some things that seem to help most, but not all people.
Ruth
I’m so glad you found a path of healing. At age 60 I’m listening to my body and allowing the medical profession to assist in its health.
Donna, are you floxed! If so, when and what symptoms are you experiencing? Are you getting better?
Hi, I just finished a 5 day dose of 750 Levaquin a week ago, and am having muscle weakness, sore joints, and neuropathy (burning pain) in hands and feet, as well as brain fog. Am taking Magnesium (800) and supplementing with NAC and turmeric to boost glutathione. Am I missing something specific to neuropathy? I understand MitoQ and PQQ to be good for mitochondria/fatigue but am wondering about the neuropathy.
Hi there, I heard that R-alpha lipoic acid is supposed to be good for neuropathy, I don’t think its a miracle for neuropathy but I have heard good things in reducing it somewhat.
I wish you 100% wellness soon x x :)’s Could you Please indicate which Brands of items you took/doses on ones not mentioned thanks p.s. u r very beautiful I hope you stay well :)’s best of Luck hugs Aidan :)’s
Hi Tamara thanks for sharing your story. Do you remember getting heart palpitations with cipro? Im having strange fluttering in my chest. Im supposed to start the IV glutathione but scared.
I just want to say thanks to everyone..I have learned so much from all of you…it is kind of Trial & Error…I feel so sorry for all of you…I just have heel tendon pain…but it is getting better..some what…We just have to keep the faith that someday we will get better…but I will never take FQ ever again…I was given Levaquin along with Steroids…it could have been a lot worst…Good Luck to every one…
After being on iv cipro and iv ceftraxione for a month, I couldn’t walk across the room and then my entire body broke out in solid rash. So they stopped all antibiotics and I was left in pain and barely walking and with nothing to stop the infection they were afraid had entered my skull. An ent told me that my gut had been destroyed by the antibiotics and that I would need a high dose (very expensive) probiotic for at least two years. Ended up discovering kefir grains used to make my own kefir (very high in probiotics, certain vitamins, and readily used by the body). Drank 2 cups kefir daily and yogurt, along with taking 1000 magnesium citrate every night. With the kefir, skin conditions improved, pain in legs lessened, I could eat more things again. It has taken two years and I can hike limited again. If I don’t stay on the kefir (at least 1 cup) and the magnesium, I do have problems so I just try to stay consistent.
Oh my gosh your story is a glimmer of hope! I go in for my first glutiathone iv tomorrow. Ive heard amazing things about it. Thank you for the positivity. I was floxed a month ago. Anxiety, depression, insomnia and muscle twitching with some neuropathy and short of breath. I have a small child I feel so nervous to be alone with because my body and mind are taken over by this anxious poison. I just want that feeling to go away! Best wishes hope you’re 100% now!
Seager — how are you doing now?
I have to tell you all that my injuries came 2 years after my dosing of Cipro in 2012. After that first hit, I was left with residual, minimal neuropathy of my feet and ankles. Minimal, in that most of the time I did not even recognize it. Then, in 2014, while coming off the summit of Mt. Tebo in the Olympics (previously I was quite the active 59 year old), I simply stepped down and my left ankle’s ligament and tendon structure blew out, causing my fall and the break of the fibula. So, just because I was technically 2 years from the date of exposure, it did not confer immunity from ruptures. At least I am walking now. Still lots of difficult symptoms everywhere in my body though. Not sure if I will ever get back into the mountains again, but am still riding horses. At first I just wanted to die….truly. Have now moved into a more existential place.
I’m so sorry for the pain that you have been through, Jana, and thank you for telling your story. In some ways, I hate to hear stories of long-term damage and effects that are delayed for years. The stories are true though, and they are a warning to all of us.
I’m glad that you are still riding horses and that you have moved into a more existential place. Everything that these drugs steal from us is horrible. Hugs to you!
Regards,
Lisa
rainbow, physio helped me a lot. stretching, massage, treadmill. also did glutathione and i feel it helped. i also did an iv of vitamins, magnesium, and amino acids on a weekly basis which i think helped, but i don’t think it’s wise to do super large amounts. i believe one of our issues is absorption, so iv’s can be helpful, at least for me. The glutathione helped mostly with pain for me.
Hi Jimmy,
So glad that Glutathione helped! 🙂 and you can call me Tamara. That’s my story up there ^ it just posts from my personal WordPress account 😉
so glad u r feeling better atleast someone is recovering well
Jimmy- How are you doing these days? I know you had quite a setback 10-11 months ago I believe. Am I to assume that glutathione IV and some physio has brought on improvements since then?
I know I’ve been floxed, I was in the hospital just 1 week after taking a 4 day run of cipro. Chest pain, nausea, vomiting, burning, cramping, ripping muscles. Headaches, pressure in my head. Severe Panic attacks, insomnia ect. I need help horribly. I’ve been in such despair for 2 months now, no where to turn. Could you tell me where you went for your iv treatment? I live in Lincoln park, Michigan. Please! any help would be greatly appreciated.
Hi Elisha,
Here is a web site where you can find a functional medicine doctor – https://www.functionalmedicine.org/practitioner_search.aspx?id=117 Functional medicine doctors are the ones who do glutathione IVs. Here is a doctor referral list too – https://floxiehope.com/2013/12/11/doctor-referral-list/. Also, Ruth’s functional medicine doctor helped her a lot. If he’s close enough to you, maybe he can help. Here’s her story – https://floxiehope.com/ruths-story-cipro-toxicity/.
Hugs,
Lisa
Hi Elisha,
First please don’t be scared. There are ways to get better and you’re early on so there’s hope to catch it before it gets bad. Lisa’s links are good. I live in Canada and my IV treatments were administered by a naturopathic doctor although I know their permissions vary wildly from place to place. (Certain provinces in Canada don’t let them do IV). You could always search your town or city and glutathione IV in Google. I hope you get better!
My email is posted somewhere up there in the comments ^ if you need someone to talk to.
For everyone else I just wanted to update I’m 10 months out and I am continuing to get better. I had a milder relapse for 4 weeks in September but that has stopped. I even went out dancing on Halloween all night and zero pain! 🙂
That’s good to hear Tamara.
I’m in my 6th month and so far nothing improved.
Still the same tendon pain as day1. :/
What I take:
3000mg lipo vitC
Magnesium oil, angstrom magnesium
1 drop 12% Lugol’sche iodine transdermal
200mg selenium
Caprylic acid, bentonite, psyllium powder
Slippery elm bark
Apple cider vinegar
Probiotics
Further I’m on a diet consisting solely of organic chicken, eggs, salads, olive oil, brown rice, oats, sweet potatos and vegetables.
What am I missing out that could better this damn tendon pain?
I was soo athletic before it’s comical what I’ve become.
Mark
Hey Mark,
I would say collagen would be a good one to add. I added in homemade bone broth from chicken later on as I started to walk. Ate it everyday a cup full. Besides it’s yummy. I haven’t taken any supplements other than regular ones I’d taken before floxing in months. You can also take supplements of the collagen.
I have heard good reviews from other floxies about that.
Also, for pain and inflammation turmeric and francincense are good. I managed to find pills that had both called Boswellia complex. Boswellia is another name for francincense.
Again, I have heard many floxies say they used both these herbs too.
Mark did you ever try to do glutathione?
And I just thought of something else. Physio very gently with ultrasound on my tendons seems to help a lot.
Hi mark, would you mind emailing me so we can discuss supplements, reactions,etc, different magnesium a, ways to recover etc. and I began magnesium at about 2-3 months after. I had a reaction a month after I finished the fq’s.
Jimmy
Mark, thank-you for the info. I will try very slowly incorporating these supplements.
I am 55 but could not consider going on HRT due to history of stroke in my family.
Unfortunately, I think its really too late for me to reverse the damage. It’s been roughly 23 yrs of torture.
I feel so sorry for young folks dealing with this.
thanks again- Carolann
No problem.
Yep I’m 26 years old, student, have a loving girlfriend, worked part time with enthusiasm and was an healthy athlete that trained 6 days a week twice a day.
Now, as of right now, my life is over for me.
I hope that it’ll look different in a couple of weeks but it doesn’t at this point.
All of that because of an ear infection.
I had no fever, no pain…now I have nothing.
Mark
Hi mark, would you mind emailing me so we can discuss supplements, reactions,etc, different magnesium a, ways to recover etc. and I began magnesium at about 2-3 months after. I had a reaction a month after I finished the fq’s.
Jimmy
Oppppsss.. Jimmybruhl@gmail.com