*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.
In April 2014, I was prescribed seven days of Ciprofloxacin (2 X 500mg) for a possible urinary infection. At 53, I was in great health, eating very well, going on many vigorous hikes, and taking exercise classes.
If I knew at the beginning of this rather awful adventure what I know now, I am convinced I would not have sustained so much damage. I am also convinced that if I had not taken full control of my own health as it got worse, I would now be on disability. But, one year later, I am mostly recovered, stable as long as take my supplements, and feel 80 to 90% of my past fit self. I am not sure if I will reach complete recovery. That’s OK. I am happy to be able to once again hike for miles, even if I’m not going up big hills with a backpack.
There is an additional sadness in this for me, as I relived some of my father’s suffering. Even though my family eventually (and too late) connected Cipro to my father’s devastating peripheral neuropathy, we had not realized that it also probably contributed to a number of his final health problems, including heart failure. I had forgotten the name of his antibiotic, or I never would have taken it. I guess I’m living proof that Cipro reactions may have a genetic cause.
The first day, my heart pounded loudly when I went for my noon-hour walk. I shrugged it off, as it reminded me of how my heart races during hot flashes. On the fourth day, my jaw got misaligned after eating popcorn and I realized I was unexplainably depressed. On the fifth day, my shoulder collapsed painfully when I put weight on it as I shifted seats in the car, and on the sixth day, when I wrung out a dishcloth, my right wrist tendon hurt excruciatingly. I finally clued in, stopped Cipro a day early, and started online research. What a horrible thing to find out that fluoroquinolone damage can be cumulative and symptoms were likely to grow in number and intensity! And, like so many others who do not have robust DNA damage repair mechanisms, that is exactly what happened to me.
TENDONS, LYMPH GLANDS, HEARBURN, NERVES: During week 1 and 2 (post drug) I had my first “set’ of symptoms. My initial tendon damage worsened to the point I could no longer play the cello, write properly, or open heavy doors without re-damaging the tendons. This was combined with episodes of tingling rushes and numbness running down my arms and into my hands and very occasionally my legs. My arms would feel weak and disconnected, so I would swing them around to make them feel “alive.” My research showed this could be a side effect of swollen tendons manifesting itself as thoratic outlet syndrome, but also reading that Cipro attaches to the GABA A receptors, I realized it might actually be nerve damage. These symptoms lessened within weeks, but did not completely disappear for many months.
I went for a massage and although it felt wonderful, this worsened things within the hour. I now realize it released toxins from my muscles were holding into my blood stream so my body reacted.
Other symptoms included very swollen lymph glands, especially behind my ears and in my armpits. Often, I could not close my jaw properly as the swelling behind my ears threw my jaw slightly out of alignment. This, and some heartburn, also gradually subsided over the next few months.
I feel fortunate that the temporary depression I experienced, while taking the drug, lifted and did not return. I know that alternations in cognitive and emotional states are very common for those that are “floxed.” The life-saving value of fluoroquinolones is due to their ability to permeate every cell in the body, including the brain, which is why, for those who react, it can create incredible damage in any number of organs. My most vulnerable organ was my heart, and this started to take most of my attention…
CHEST PAINS, HEART ARRYTHMIA, HEART POUNDING: The intermittent chest pains, which I had tried not to notice earlier, suddenly worsened at week 2 and worsened again at week 3. My blood pressure went sky high for a day or two and I ended up at the doctor’s office with what felt like a 20-pound weight on my chest, and my heart pounding so loudly I could feel the pulse in my toes. My doctor had known me for decades and agreed I was experiencing a drug reaction. After a few tests provided no enlightenment, she suggested I go to emergency if things got worse, and realizing she did not have the tools to help me, supported my idea of seeing a naturopath. I live in Canada, so do not pay for medical tests, although I do pay for a naturopath. That evening, I drove to emergency, as my heart seemed to be revving out of control. Emergency doctors smirked at my assurance my symptoms were caused by Cipro, and although the tests they chose confirmed non-life-threatening arrhythmia and high blood pressure, there were no other points of concern. I was relieved and frustrated in equal amounts. This is when I decided to start taking control – I bought a blood pressure cuff to monitor my own blood pressure and was pleased to see it soon dropped.
UPPER ABDOMINAL PAIN, UPPER CHEST PAIN, UPPER BACK PAIN, INTERNAL TREMORS, DRY SKIN: Along with my heart symptoms, I started experiencing upper abdominal discomfort, along with upper chest and upper back pressure/tightness/pain that would increase through the day. The upper abdomen pains went away over the next few months and, in retrospect, I think the cause was likely a compromised liver. However, my whole chest circumference continued to feel fragile and the constriction of wearing a bra around the ribs felt damaging. A year later, my best guess is that this is costochondritis (inflammation of rib cartilage) combined with myofascial pain, and I still suffer from it, but less.
At week 3, I started having some “whirring” internal tremors which, although occasional, were disturbing. It felt like electrical synapses were misfiring. These gradually disappeared after month 6.
I also became aware that my skin was extremely dry – that there were some rough scaly patches on my arms and even on my face. Initially, I couldn’t care less, as my other symptoms took precedence, but eventually I bit the end off my CoQ10 (lipid) capsule and put a drop or two in my moisture cream, and this really seemed to help.
GETTING WORSE – HEART AND FATIGUE: Between week 3 and month 6 my heart gradually became worse and fatigue set in, with symptoms worsening through the day. Not only did my heart seem to pound, shaking the whole chest so I could not sleep on my left side or back, but unless I was being slightly active (walking) the beats were WAY out of time, bouncing all over the place, and I had a couple 30 minute periods of tachycardia.
I saw the naturopath and in addition to Omega 3, Vitamin C and D, Calcium/Mag, I started CoQ10, some Magnesium, and B vitamins. I also started some homeopathic UNDA remedies which I later dropped.
CYCLING OF SYMPTOMS: It took a while to realize that all the symptoms went in a 6 to 10 day cycle – from almost not present to overwhelming. This was very confusing to me and health care providers, because each time I improved, I hoped I had healed permanently. One year later, the cycle has faded away.
FOOD AND BOOZE: I’ve always eaten very well, but I wanted to maximize my chances of healing so moved towards a hunter/gatherer diet, eating lots of protein, nuts, vegetables and fruits. But, soon I had to add back whole-grain carbohydrates as I started losing weight. I also discovered that booze actually helped me. I began to dread evenings as symptoms would worsen. But I learned that when I started rocking in pain or worry and/or heart arrhythmia and pounding was at its maximum, one alcoholic drink would not only dull the pain, but actually calm down the symptoms too. It was actually quite miraculous. I know alcohol affects GABA receptors and that Cipro binds to them, so maybe it calmed some form of Cipro overdrive. I don’t know, but I know it helped me when I needed it.
TAKING MORE CONTROL: At month 2, I had a day of reckoning, where I realized my heart was giving out unless I did something! It was frightening realization that I had to count on only myself and yet I was no expert. So, I wrote an email to my friends/family to send me strength and decided I would have become an expert as far as I could. It is interesting to think back on where I was psychologically at that point. I live on my own, and had no-one to either assist me or listen to my worries day to day. I also needed to continue working as I am the sole wage-earner. I have lots of people that love me, but it was hard to reach out to friends and family when you don’t want to worry them, or pressure them with more than they can handle. Besides, how could I ask them to believe what was going on in me, when I could hardly believe it myself, and I did not have the backing of some doctor’s prognosis? I had to be strong. I had to find the compromise between just maintaining forward motion for survival, but also taking full control of my own healing. Some days it felt like I was limping forward like an injured animal not being able to intellectualize what was going on, but just getting through the day so I could go back to sleep to make it go away. But, I knew my only way to heal was to find my own research and cure, and would spend two or three hours a day on the computer, digging past all the worries and hype to scientific studies.
I was determined not to take any other drugs unless I absolutely had to. This means I went against the suggestions of some friends, who advised I go to cardiologists and other specialists, but I did not want to prompt test results that might dictate a cocktail of more pharmaceutical drugs. My experience in emergency taught me not only how the medical system was not attuned to Cipro toxicity, but that I was in no immediate danger – I was not going to have a heart attack. I was convinced Cipro broke one or more chemical reactions in my body by removing core components and I needed to focus on adding back into my system what might have been removed or damaged by Cipro, and I would reconsider tests at the end of whatever healing process I could manage.
My first “aha” moment came when my research discovered a chronic fatigue specialist, Dr. Myhill, who connected symptoms, exactly the same as mine, to mitochondrial failure. I then googled Cipro and mitochondria and discovered that yes, Cipro and other fluoroquinolones cause mitochondrial dysfunction, and subsequent Reactive Oxygen Species (ROS) overproduction which damages DNA, protein, and lipid damage and cellular death. Dr. Myhill said that the heart is 40% by weight mitochondria because it needs to produce a lot of energy, and if the mitochondria cannot work efficiently, it simply cannot pump through enough blood. Chest pain results when energy delivery to the muscles is impaired. There is a switch to anaerobic metabolism, lactic acid is produced and this results in the symptom of angina. She recommended certain supplements to improve mitochondrial energy output which I then found replicated by some forward-thinking cardiologists. I started on D-Ribose, L-Carnitine and already was taking CoQ10 (see the SUPPLEMENT section below). Fifteen minutes after the D-ribose, I felt tingling all through my heart like cells were waking up. And so they were.
CURING THE OXIDATIVE MESS: Although my heart seemed a bit better, the fatigue did not lift. At this point I was bad enough to be on disability as I felt I was doing some damage if I pushed myself past standing up for 10 minutes, walking more than 50 paces, and napped every few hours. I think I was in some form of denial so I could allow myself to simply continue. When I was offered a more interesting job in a different town, I moved. In retrospect, I realize I was not really strong enough.
By the month 3, I was desperate. Through my research I realized that the “vicious cycle” of mitochondrial damage and oxidative stress makes it so that damage is accelerated as time goes on, and even though I was probably helping my heart make energy, there was too much accumulated mess for it to work. I found out that glutathione is the master naturally-occurring antioxidant in the body, and that if you naturally have low glutathione, or it is completely compromised by toxic overload, your body cannot complete the energy-producing methylation cycle properly, or regulate a variety of cell stresses. I read that NAC (N-acetyl-cysteine) is the most important building block of glutathione and so started this as well as quality whey protein powder which is high in all the specific amino acids which are precursors to glutathione production. It didn’t work. I was fortunate to talk to a local natural supplement guru, who explained that if my methylation cycle was actually broken (forced to use an inefficient workaround), I would need to actually take the glutathione itself. He also found me a source of liposomal glutathione, a less expensive alternative to an IV of glutathione, which until recently was the only other format that would ensure absorption. I started it gradually as I read that releasing the toxins from their hiding places in your body can cause what is known as a herxheimer-type reaction, where the body reacts to the rise in mobile toxins by becoming unwell, before it can clear them and get better. I temporarily became really unwell, but I promised myself I would stay the course for two weeks, at which time I definitely started to improve. I continued to persevere and starting month 4, my energy returned and symptoms decreased. Finally!
I started focussing on why I might have had a reaction, taking methylated forms of folate and B12 in order to support a possible MTHFR gene mutation.
EXERCISE: I have always tried to “hike” out my problems. When I was first compromised, I tried to push my body too hard. It seemed there was always strength in the moment, and even though I felt a tenuous warning from within, I did not listen. As with chronic fatigue patients, the effects of overextension are felt with a crash the next day. However, as I gradually improved, I started pushing my body, which used to be very capable, to do what it was supposed to do, hoping to gently stress the mitochondria into better production, without creating more oxidative stress by overextending. At first I followed 10 minutes of an exercise video or took a 10-minute walk every day, but by month 5, I progressed to a one-hour exercise class or a 5km hike.
YAY MAGNESIUM! By the month 9 my fatigue was lifting, but my heart was beating way out of rhythm much of the time. I knew that the magnesium I was taking was minimal, although any more caused diarrhea. It wasn’t until I heard the Floxie Hope podcast with Ruth Young that I realized I needed to force my body to take more magnesium because it is an essential part of transporting electrolytes that regulate heart rhythm. I send away for magnesium threonate because it absorbs so well (avoiding diarrhea) and is especially effective in reaching the mitochondria inside cells, and magnesium oil, which I have been spraying on my skin ever since. Within a couple of weeks, my heart pounding and my arrhythmia was incredibly improved! The mag threnoate made my dreams go incredibly vivid, and as I improved, it seemed to keep me awake at night, so now I only take it in the morning. I stopped taking calcium I had been on for years as it can prevent magnesium absorption and I continued to perfect my mixture of supplements, adding MitoQ, PQQ and R+ Alpha Lipoic Acid (see SUPPLEMENT section below).
Then, I became a little overconfident, allowing my glutathione supplement to tail off. Within a month or so, I started regressing, and realized the cause. Even though my methylation cycle was operating, it still needed an outside source of glutathione to work properly. Instead of more liposomal glutathione, I decided to try NAC and quality whey, and this time, they brought my health up again in a few days. This means my methylation cycle is still compromised, and not crashed – a cause for celebration.
NOW, AT ONE YEAR: Healing is slow, but steady. I figure I am 80-90% better but realize I may always need to continue taking some supplements to maintain optimal health. I am more careful with myself. I nap when I need it, I don’t have more than two drinks, I alternate physical days with non-physical days, I eat mostly whole foods and I will pull away from stress overload. I still have some heart issues such as mild arrhythmia and on days where I overextend, the heart “thumps” a little too loudly. I chose to go for an echocardiogram and it shows my heart has stretched in places: my left atrium has a little dilation and I have mild mitral regurgitation. I don’t know if this is reversible or not, but I’m OK, and will be re-tested. Recently, I started feeling I actually had more energy than I needed when I was walking and this made me feel very joyful. I am walking up to 10 km, and I almost feel ready to try climb a hill or two.
The tendons in my right arm and my shoulders still feel shortened and I baby them a little, but they are not stopping any form of exercise. My muscles, except my heart, feel as strong as they ever were.
I still have upper torso discomfort appear many days, and now the constochondritis seems to also be affecting the cartilage around my trachea. I focus on relaxing, breathing deeply, and it lessens. However, my upper back is tight with muscle knots, so every day I do some stretches and some strength exercises, as keeping active reduces the discomfort. I don’t worry though – I know that I have now given my body everything I can to help it heal almost anything and I believe it is and it will. Patience.
WHAT I WISH I KNEW THEN: I would suggest anyone taking any fluoroquinolone drug also take NAC as studies show it can prevent the resulting oxidative damage. I would also suggest that they take magnesium at a different time of the day to the drug and for a couple of months afterwards, in the best form they can find.
If someone becomes “floxed”, I would suggest they immediately go on supplements for mitochondrial health and liposomal glutathione (see SUPPLEMENTS section below) to see if they could prevent further damage.
FINAL THOUGHTS: I believe we have to stop expecting healthcare providers to be well-versed in the exact area of science our own body problem requires. This is because there is only so much each healthcare provider has the ability to assimilate, especially with internet information explosion. The way western medicine is set up, GPs are overwhelmed, trying to filter out who they should forward to a specialist, and specialists are more than likely to be only investigating one isolated part of the body, unlikely to piece together the systemic puzzle. Even the health care providers that do view the whole body, such as naturopaths, functional specialists, or doctors of diseases such as chronic fatigue, are not always able to benefit from each other’s insight.
Since the middle of the last century, our western society has been brain-washed into trusting science implicitly. But, science is an imprecise art. Just because something is discovered and given a name, does not mean its mechanism is understood. So much cannot yet be detected. But, nevertheless, the majority of our society expects a “scientific” drug to cure their every little problem. Very unfortunately, this has given the pharmaceutical industry almost infinite control to supply hope in bottles, whether it is effective or damaging. Even if science may strive to better our health, pharmaceutical companies strive to better their profits. And doctors, who we count on, have no choice but to rely on regulators persuaded by this multi-billion dollar pharmaceutical industry.
As drug consumers, we also need to realize drugs and even some “natural” cures work by shifting our body chemistry. Sometimes there is a miraculous cure, but often, the consequence of the shift is not considered. For instance, Acetaminophen reduces intracellular glutathione levels, which is also essential to remove toxins from your body.
We need to help facilitate information exchange between doctors, patients, and researchers. It is hard to question doctors. But we are each a specialist in observing our own bodies, and if our own precious health or life is compromised, we have a huge incentive to pull together research which might be valuable to all. I encourage others who have been “floxed” to document their symptoms, research, and cures in a way that is accessible to the medical community. It gives credibility to walk into a doctor’s office with a report, even if you are the author, and also facilitates the gathering of data for studies. I started my report in order to fulfill the “tell it on your own words” needs of the University of California, San Diego, School of Medicine “Fluoroquinolone Effects Study” (www.fqstudy.info) and then used it for Health Canada Adverse Reaction reporting, and after seeing my report, geneticists in British Columbia, where I live, referred me to be part of a University of BC study on Adverse Drug Reactions.
I have conducted over 400 hours of research on my symptoms and Cipro. On this Floxie Hope website, Lisa has gathered extensive of resources, so I see little point in listing my own. However, I’d like to mention one more I stumbled upon recently as it gathers tons of research about MITOCHONDRIA and how they work and what to do when they don’t in a very comprehensive and easy-to-read way. http://www.knowmitochondria.com/. The author, Lee Know, includes a section on why mitochondrial damage causes each symptom, what supplements are indicated, and why. Note: Although the author has not listed fluoroquinolones in the long table he supplies in his section on “Medication induced mitochondrial damage and disease,” I have been in contact with him and he is in absolute agreement.
I’ve been fascinated by what I’ve discovered, but because it is not mainstream, I’ve found I need to be careful when discussing it with those who are invested in traditional medical solutions. I’ve discovered energy production by the mitochondria is a foundation for health and well-being, and necessary for physical strength, stamina and even consciousness. This means that mitochondrial health is vital to every organ and body function and nurturing this process may in fact allow each our organs the best chance to heal their own imbalances. Compromised mitochondrial function is now seen as one of the leading causes of a wide range of seemingly unconnected degenerative diseases such as chronic fatigue syndrome, depression, Alzheimer’s, Parkinson’s, Huntington’s, fibromyalgia, cardiovascular disease, type 2 diabetes, mitochondrial disease, infertility, some eye and hearing-related diseases, cancer, autism and more. And it should also be no surprise that a drug that compromises mitochondria, such as Cipro, is beginning to be implemented in actually prompting all the above listed diseases.
I’ve also discovered that each of our genetic makeup predisposes us to a differing set of set of potential ailments and these may or may not be realized. We may ride out these instabilities without symptoms, or they may be triggered by life, by stress, accumulated toxins, or by, in the instance of Cipro, an imposed chemical imbalance. I can’t help wondering if all the accumulated toxins from food additives, drugs, pesticides, and a huge number of industrial contaminants are shifting the point of balance in each of us closer to the tipping point. According to Lee Know “the field of mitochondrial medicine is exploding, with over 200 to 300 related studies been published each week.” It is too bad there is not an adequate mechanism for this information to reach the frontline healthcare providers.
I’m not yet sure what genetic tendency Cipro might have triggered in me – although I believe it is some ingredient in methylation, where the cell’s mitochondria DNA takes raw chemistry and turns it into energy. It could be that I have a genetic tendency to not metabolize folate well (MTHFR gene) or make glutathione efficiently. Or, it may be that I had already reduced the magnesium in my body to such a low level through the use of year so heavy-duty calcium supplements because extra calcium washes away magnesium. I have some genetic testing booked. I’m not sure if it will find what kind of strange thing happened to my body, but I’m just pleased my experience has been recorded to help build the body of science. And I’ve found one advantage: all these supplements have improved my brain function – I feel it works as well as it did when I was in my 20’s!
SUPPLEMENTS:
To support mitochondrial health – essential:
- D-ribose – the raw energy every living thing makes in our cells – New Roots makes it at a reasonable price
- L-Carnitine – I take both acetyl-L-carnitine and L-carnitine, because the first is best for your brain/nerves and the second for your heart, but either will do (reasonably priced)
- CoQ10 – this can be expensive because you need top quality. I use a Thorne Q-best which is oil-based
To support mitochondrial health – good:
- MitoQ – only one source, from New Zealand and expensive. But it is COQ10 altered to enter mitochondria more efficiently, so you can substitute it for some/all of above CoQ10
- PQQ – a moderately-priced newish B vitamin that may help mitochondria replicate
- R+ Alpha Lipoic Acid – moderately priced. Be sure you get the R+ version
To support oxidative mess:
- Liposomal glutathione (you could use IV gluthione as well) -this is if your body is quite compromised. Other forms don’t absorb. Expensive but well worth it.
- NAC (N-acetyl-cysteine) – If you’re not as compromised but need some detox. It is a glutathione precursor
- Whey protein – only use high quality, from cows raised without antibiotics! Contains all glutathione precursor amino acids
Additional oxidative stress help:
- Omega 3
- Vitamin C
- (Vitamin E)
Other essential supplements
- D3
- Magnesium – ESSENTIAL! Cipro robs you of this. Magnesium threonate is easily and quickly absorbed into the mitochondria and brain. Magnesium oil is also quickly absorbed. Magnesium bisglycinate is excellent but did not work well for me
To support a body that MAY have been compromised by the MTHFR gene problems:
- Methylated Folate (L-5-MTHR) and Methylated B12 (Methylcobalamin) – only a few companies make the methylated versions of these B vitamins. Ideally in a form with other B vitamins in a top quality B complex such as Thorne Stress B or AOR Advanced B Complex.
To support absorption and processing of everything:
- Probiotics
** 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.
Hi Bronwen, L, Dee,
I apologize for not responding sooner. Thank you for everything that you said. I’ve been fighting for 1.5 years now for information, a diagnosis, help, still nothing. I have had several biopsies, including bone, seen many specialists neurologists, hematologists, rheumatologists, dermatologists, gastroenterologists, gathering bits of information, but never any help, not even from a major drug safety clinic in Toronto a few months after my drug reaction, I’ve been denied referrals many times, been told I have a somatoform disorder, that my symptoms aren’t real- my painful stinging, burning, neuropathy, muscle twitching, spasms, muscles popping like popcorn in a popcorn machine, double/blurry vision, pulsatile and ringing tinnituses, abnormal heart symptoms, swelling legs, night sweats, excruciating bone pain, body vibrating, shaking at night and when I wake up, and in the beginning feeling like I was being electrocuted, being stung by bees, etc. I keep a symptom/diet diary since this began.
I suggest you have your immune system checked, ask your doctor to order these simple blood tests, test your immunoglobulins (IgG, IgA, IgM) and especially your free light chains. A FLC test costs $50 Cdn, even if you just get this done. I fought to get my immune system checked after seeing all these specialists, especially the one who said I had somatoform disorder and falsified information. That’s when the abnormalities showed up. I believe I had been fighting so hard, I had been keeping my kidneys, body stable, that I appeared normal, but not enough to overcome the damage that macrobid (nitrofurantoin) caused. It would be interesting to know your results, if you do, do this. I think the heart symptoms, neuropathy, muscle twitching, spasms, both ringing and pulsatile tinnituses, etc….even if you don’t have all these symptoms, are all due to abnormal proteins being deposited, causing damage. I have chronically elevated kappa free light chains, my IgM is usually slightly elevated, seems to me because it is trying to keep my ESR (inflammation) down (ESR is another blood test you could ask for). I think I may have amyloidosis, but there are other possible illnesses like light chain deposition disease, etc. I was a completely healthy, normal woman till the day after I started taking macrobid (nitrofurantoin), it attacked my calf muscles first, I was told to take a muscle relaxant instead. The Canadian Compendium of Pharmaceuticals and Subspecialties lists neuropathy as a macrobid adverse reaction, doesn’t say why, just like fluoroquinolones I would assume. I am proof that drug reactions are hereditary, that drugs can damage your immune system, and if like my father, leads to cancer, his reaction resulted from one time exposure to blood pressure medications one weekend, it destroyed his health suddenly, very drastically. I’m trying to get to the truth of this matter before it’s too late for me, my heart is my biggest concern, bigger than this horrid, stinging, burning neuropathy, and I have been fighting hard to keep my body healthy, and trying to see if I can, in any way, get my FLCs down… elevated FLCs are a known cardiovascular risk and I didn’t have to read it to know it- I felt it, saw it, heard it long before I learned about FLCs.
Hope this helps. Keep fighting to get back to normal! Best wishes to you all.
to my fellow floxies…i was floxd 9/16, i wish i had seen this back then…i have stumbled upon some of the advised supplements, and have come thru to some extent. the quaking, depression, crying, fatigue, muscle spasm/cramping, brain fog, joint pain and heart arrhythmia have been a part of my life ever since i took the cursed drug. the upper torso and rib cartilage is definitely very difficult to manage, but has come to a somewhat bearable level.
i read a blog of a survivor back then. his advice was that i must keep pushing thru…which i have done. i want to cry when i think back, but i cannot allow myself to do so…keep looking forward. i sent myself the same text daily, encouraging myself to keep pushing for my wife, for my job, for my children…keep looking forward, one day at a time, be positive, dont be resentful, it wasnt your fault, etc., etc.
ive spent over 10,000 trying to get better. ive used every seat cushion imaginable along with every joint stabilizer trying to stay upright and functioning. since ive been on sitraline, i have become more “numb” to my reality. i believe this has helped calm down the stress level, which exacerbates all of the muscle spasms, etc .i was given this by the neurologist, who wanted to turn off my dwelling on the symptoms.
every dr. looked at me like i was crazy, and in fact, i was. i was losing my mind, without a doubt. i know i wasnt right, all they did was tell me to calm down and it was all in my mind. not until i saw a pain management guy who injected my locked up head, neck, shoulder, back muscles with lidocaine, did i finally get relief…trigger point injections. i see him 1 a month, from 2-3 times a week. now i go in for mainteneance.
oh, by the way, did i tell you i was on prednisone for my back at the same time? in additionj to the pred-packs, i actually had spinal injections with steroids to help calm down my herniated discs, stenosis, etc…these steroidal intakes were without a doubt the mushroom cloud of the experience. i have herniations throughout my C, T & L spine. i still suffer greatly from these joints, which again the old injuries have been brought forward by the cipro. i have started a regiment of collagen, with the hopes of feeding the injured tissue.
this passed month, i actually had forgotten that i was flox’d, well, to a degree anyway. i started working out…getting in shape, as i have a full fitness room in the construction Project i am running. i realized over this past weekend that the achilles and heel pain are most likely a direct result of the floxing. i went to the internet over the weekend and stumbled on this site. i’ll be going in next week to see if any damage has occurred, but im hopeful they’ll look at me and say the same thing ive heard these many months, “i dont see anything wrong , Kevin.”
i love melatonin!! ive taken it with .5 mg ( i cant remember what the script is!!) this is one of the biggest problems, my memory lapses and inability to grab a word like i used to. i think this is getting better, very slowly.
stay corageous…its not your fault, live your life as best you can, remain vigilent, rest well, suppement, cry, and keep moving on…keep pushing!
I have been through 10 months of “doctoring” and specialists and blood work and brain mri and electrical shocks in my arms legs …etc all by “physicians” who “never heard of this reaction to cipro” ! Some days are actually bearable, others tortorous. Now that I came across this writing I will not stop researching. If there is light at the end of the tunnel I hope and pray I will find it.
Brownen, thank you so much for you story and your menu of what helped you. I have been adhering to your “recipe” for the last 2 months and I can tell you with much certainty that it is helping, (although I am afraid of saying that for fear of duping myself.) Nonetheless, the supplements section of your recovery story has been a revelation. I’ve had 6 doses of Glutathione and used the recipe daily… what a difference, not 100% yet, I’m at a good 60-75%, with a couple of near normal days every 10… Thats the best place I’ve been in since my Levaquin IV’s.
Hi Bronwen
I took Cipro one year ago and now my heart is getting worse day after day;ventricular arrhythmia and parossistic tachycardia.
I’ve been to ER many times and the last one the cardiologist suggested to me to take a beta blocker Bisoprorol.
My question is do you have any suggestion about supplemets?I’m taking Mag,COQ10,vit b complex,d ribose L carnitine,Whey protein,vit C.
I begun to have arrhytmia with Cipro but I don’t know the reason I’m getting worse….at the beginning I improve a lot.
thank you
Dee, forgive me for jumping in, but I use the PURE, which is as effective as the IV injections I’ve had… I’ve used the sublingual as well, a French Company manufactures that, IMHO the PURE is highly effective… as it produces the same nerve tingle/rush of nerve heat that I have experienced post IV injection. in my case the the herx effect has really been a thing with this all this, but, if you are patient enough, there is dramatic difference post herx relief, I started to encounter 3 weeks after starting Brownen’s suggestions for treatment, i no longer wake up on fire and the onset of unwell for me is now delayed late into my day… my pain is now much more localized and thankfully slighter; somedays it does not return until 9 or 10 just before bed… but, I confirm that that there are cycles of very good days, good days, bad days and not so bad days… It has been 5 years since I was on 5 weeks of IV Levaquin and 2 1/2 since 2 week course of IV cipro for the GI troubles that the Levaquin induced, I have been prescribed every manner of painkiller and anti-inflamatory 4 different specialists, which only made all this more confusing and ultimately frustrating… After 5 years of this non-medically recognized wall of pain condition I dedicated myself to the course laid out here… things can improve…
Dee, I’ve been using the Pure Encapsulations – Liposomal Gluttathione, this is the link for the one I have had great success with. https://www.pureencapsulations.com/liposomal-glutathione-2783.html. My flexing hasn’t been the worst, from what i can discern from the stories of others, I’m probably mid-scale on the pain-o-meter. I’m fortunate and adamant with my health care providers, it was night and day… there is a pre levaquin state and a post levaquin state… My body was ever so slowly starting to recover, notably in the brain fog dep’t but the last 3 months have shown me that there is still a me without the zombie… I am very fortunate thus far… without resources like this I think I would have seriously lost my mind…
I take 1 tablet a day, somedays, the max of 2 tablets with food, but the herx effect does tend to be overwhelming at times. I’ve only used the sublingual form and a caplet form, alongside IV injections… my health care practitioner has a expressed preference for the Liposomal form, not sure why, I don’t purchase them from her, I’ll ask her next time I’m in… I’ve not explored the adrenal fatigue end of things just concentrating on dealing with GI/neurological end of things and my hip tendons and sternum/rib cage. I’m only 3 months in at this current pace. Prior to this, my body was getting slowly better, but the flares were often more intense with very high spikes of unwellness… lost days.. slow focus, intense unwellness coupled with a good deal of pop-up anxiety spikes due to the flares. Using the guidelines, as above, I’ve truly surged forward in 3 months, my spikes or flares are much much lower and less intense.., but the places where I first felt the Levaquin sink in, the mysterious frozen right shoulder, lower right groin and hip are the only areas of significance in this last month… and at that, its an ambulatory pain, that travels mid back, down my spine settles in my right L5 region and lower right groin tendon and then back up to my shoulder, and I think this is mostly pain resonating and tracing from my colon… these cycles used to take 2-4 days, now they happen in 4-12 hour cycles and some days there is almost no wandering pain. (I say all this cautiously as I’m only 3 months into this stage of recovery.) So, yes, I feel a great deal better, but I’m greedy and the only anxiety/frustration I experience is that the days where there is almost no pain, I want those everyday, I actually believe they will come… 5 years ago I was nearly immobilized with pain in my neck, in my chest, lungs, all the connective tissue in my upper body, my heart, my ankles, I had lost weight but would retain this weird belly of fluid even though I barely ate due to the IBS-C and diverticulitis that developed after the Levaquin…even this mystery water has nearly / completely disappeared, I’ve lost 21/2 inches from my waist but only 5 lbs– which again plays into befuddlement end of this condition.
I am newly floxed; 2 months in. Am suffering horrible neuropathy pain everywhere; muscle twitches and my knees seem to be hit the worst.
Have an MRI next Saturday.
I’m so happy I found this group; I have been feeling like I’m going mad and as we all know doctors are useless in giving any help.
I have a question.
I’m taking Magnesium L Threonate as it states on the box which is 3 times a day.
In total it’s 432mg per day.
Aswell as Coenzyme 10; b12 and vitamin D.
Do I need to increase the magnesium?
I’m getting symptoms that seem to be getting worse but I’m scared to take more magnesium as it says on the box not to exceed the stated dose.
Any advice is appreciated.
One stressed mum!
Bronwen, thanks for your story- very inspired to read it. Sounds like you did your research !
If possible could you provide an example of a quality whey product to use? Thank you
I read your story over and over. I have most the same symptoms. Thank you for your story and for keeping in touch with folks. I read about a suicide from this yesterday. It terrifys me.
It means so much to us that the people who get better let us know its possible. I’m 4 months out and Im seeing the cycles that you mention some days Im not as bad and get really motivated by my improvement then I get smacked down. But I know I can beat it, just need to know when to push it a lil and when to rest. Thanks again, Bronwen
Bronwen, thank you so much for posting this. You have restored my hope! I was diagnosed with pneumonia on 12/9/2018 and prescribed 500mg of Ciprofloxacin twice daily for 10 days. After the seventh dose, I felt pain in both calves and I could not walk normally. Today, I am in much more pain and I am scared that my Achilles’ tendons will rupture. Do you are anyone else recommend a supplement that can strengthen muscles, ligaments, and tendons? Please any and all help is appreciated! Thank you and God bless!
Dear Bronwen, 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
OUR STORIES NEED TO BE HEARD, Dan
Did your muscle knots eventually go away? Do you have any advice to get rid of them besides what you already put down? Thanks!
Thanks for the response. My issue is I have trigger points that show up everywhere. Glutes, shoulders, etc. They don’t necessarily hurt but cause muscular imbalances everywhere. I’ve done dry needling but the problem just recreates itself. I assume it’s neurological. I will try to lift light weights and get some blood flowing to those areas. thanks!
Hello,
Could you send me the link to the MitoQ please? Are there different places to get it, and which would be the best one? Is it better than Q10?
Thanks
I just wanted to start off by saying thank you. I began looking up treatment methods to Fluoroquinolone toxicity and began to lose hope, until I came across your page. I am a 24 year old female that was treated for an uncomplicated UTI 2 weeks ago. I have taken a full round of Cipro in the past for a UTI. My doctor prescribed me to take 2 500mg pills a day for 10 days. After 5 days I felt fine but my mom told me to stop taking it immediately because she got tennis elbow from using Cipro in the past. I stopped after 5 days and thought I was in the clear. 3 days ago (10 days after I took my first Cipro) I started feeling very “weird”. There’s no better way to explain it, I was just feeling off. I almost thought I was just imagining all of this. I still don’t feel any pain, but I feel tightness in my calves and in my feet and my anxiety is through the roof (could also be caused by finding all this research out) I also have been having muscle spasms in my legs. I know that this is from the Cipro, especially after doing some thorough research on Fluoroquinolone toxicity. I am nervous that if I don’t act quick I am going to rupture a tendon and never be able to recover. I feel so hopeful after reading your story. I have never had any health issues in the past, I did (and still don’t) take any additional medications. I am so nervous of potentially being disabled before I even reach my 30’s. My question for you is which essential supplements do you recommend purchasing immediately in order to prevent further damage/fix any damage that has already been caused? I am a pretty broke graduate student right now, so I cannot afford all of these vitamins at once. I was just hoping to find what you believe are the most important of these supplements? I pre-ordered magnesium oil to pick up tomorrow before work because that seems like the best way to start. Thank you for posting this and inspiring me that things will be okay. I’m so upset with myself for not looking more into this medication before blindly using it- I’m hoping this will be a learning lesson for myself.
PS. And you’re young – I was in my 50s (even if fit), so you have the advantage of age!
And regarding Liposomal Glutathione – it is controversial so I want to supply you with this: It will replace glutathione that has been wiped out in your body as it has tried to deal with the onslaught of toxins and ROS (reactive oxygen species-induced oxidative stress) brought on through cell death via the Cipro reaction. There is a vicious circle – ROS production is part of the cell cycle, but when the mitochondria are damaged and cannot produce energy, then cells can’t work and the body can’t clear the mess out of the way fast enough so it gets more burdened, the ROS go up and the glutathione (the body’s garbage collector) gets used up. However, the glutathione will pull any toxins stored away in any parts of the body, and when these release you body can react the same it did as the toxins arrived – it has an immune reaction known as Herxheimer reaction. For some people it can be too much, especially as this might include mercury that has built up for years from dental fillings, etc. However, I’ve had mercury in my fillings for 30 years and I found a huge difference by taking liposomal glutathione (some people do glutathione IV instead) but you must make your own decision and do your own research. There is controversy you can look at on this website. IF you decide to, the trick is to take it slow with say, a quarter dose for a week before inching the dose up, and expect to have some level of a reaction, but manage the dose so it is not too much. I found I dipped for two agonizing weeks, and then came out the other side much better… Again, being young, you may not have as much “garbage” that’s built up in your system by now, but just take it slow…
Thank you! Thank you! After 14 months of strictly following your supplement list, I have gone from 35% at my worst, to 80% and nearly feeling normal. Greatly reduced and shortened flares, the pitting in my skin is almost gone… Thank you for providing this list my hips are moving properly again… I truly can’t thank you enough…