*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.
Ehlers Danlos Syndrome Wikipedia most undiagnosed condition in medicine…
That is because numerous sites rising up about recoveries but when people take the time to reallIy look into & read so called recoveries they are not recovered…Diseases of a thousand names Lyme CFS Fibro M.E. now we have aside from Lymies Floxies seems
everyone is running from a CFS diagnosis, yes EDS is important it is the most undiagnosed Genetic condition in medicine I bring awareness to people I follow the proven Science I have seen countless patients given the wrong diagnosis in fact it now comes up in GWI as
well..All the Vitamins Minerals are the same in all these ‘Labels’ the same for unreplicated causes take the time to read the SEID report paying attention to what Dr. Peter Rowe writes on EDS connections…There are too too many books out now giving false hope to sick
individuals who actually have serious born Family Genetic mutations it is speculation that Floxies are any cause even to say its radiation injuries unless that work is proven & replicated…Not everyone has to fully agree with your site or postings afterall we all have a
say in this matter to agree or disagree but I do not see recoveries as depicted here I still believe it is undiagnosed EDS with or without joint hypermobility, is it possible that these medicines tripped off people yes it is but it is not proven but only theories…Numerous sites
also pop up on thyroid issues but again they are all speculations & yes they sell books as well…I am not here to disagree I am here to try to show people that there are other reasons why they are sick & the links involved…There is no cause for ‘all’ these ‘Label’ illnesses
next month it will be another cause of false claims speculations…Ehlers Danlos Syndrome Wikipedia
Yes it is plausible that Floxies brought out EDS is suseptible people with these born Genetic disorders but again that is only ‘plausible’ I am also aware of numerous papers on floxie damages I am also aware of numerous papers on radiation injuries but there are no
‘Cause’ proven to date as any causes in these ‘Label’ illnesses I will give you just one case here Cher diagnosed in the 80’s with chronic ebv another unproven label of CFS Labels she has the attached ear lobes plus other facial traits so does her Mother as well not all wil
have attached ear lobes in EDS she was diagnosed with the Labels of a thousand names…I will bet Cher has ‘undiagnosed’ EDS also read about a woman MP in the U.K. diagnosed as a child with label M.E. she was in 2013 rediagnosed with Ehlers Danlos
Syndrome a genetic born condition of Collagen deficiency the body falls apart that includes the heart muscle as well…Type no.4 is the Vascular type all types are considerd chronic, unless we all as a whole fully understand all the ‘ifs’ involved recoveries will be impossible…
thank you for your inspiring story, nice you mention Ruth Young she inspired me and helped me a lot and also thank you Lisa !
Excellent write-up Bronwen! Reminds me of much of what I have gone through as well, though I took longer to realize it was the cipro that caused so many of the symptoms. Your story and detailed list of supplements will be very helpful to others . Glad to hear you are on the road to recovery – I feel I am as well, much stronger and more flexible than I was only 6 months ago – its so important to take note of the minor improvements.
Well done, Bronwen. Well done! I just wish I had understood more about this before my Son was knocked down with them. Perhaps the knowledge could have saved his heart. With much insistence from me, he was finally tested for a couple of genetic clotting issues and found homozygous for C677T MTHFR mutation. Wish they had taken it more seriously and checked it from the start, instead of waiting until he was in the hospital for a transplant and after numerous failed pumps, due to clotting. As it is now, he will be on numerous, dangerous medications for the rest of his life, in order to keep from rejecting that heart, which scares the life out of me. Each of those medications can deplete his body of vital nutrients and they don’t address that at all, they just add another medication. God help us all!
Thank you for your thorough and well written story. I think it captures the slow unfolding of FQT and I wish I had known this all when my story was unfolding. I have had similar reactions and started from a similar place of health and being very active. I am going to return to a few of the supplements you mention to hopefully assist my recovering body. I already take many of the same supplements. I am recovering and plan to continue recovering. I am at 1.5 years now. The only thing I can’t seem to tolerate is quality CoQ10 supplements. My arms begin tingling and go numb when taking them. Too scary for me. Wishing you well.
Hi Andrea: I found I didn’t tolerate one type of CoQ10 well either. I ended off only using CoQ10 that is in lipid form – Thorne Q Best and AOR Co-Q Plus are two. Both these companies are fantastic. Of course the MitoQ targets the CoQ10 exactly where it is needed, and although expensive, probably worth it to get your body absorbing what it undoubtedly needs after Cipro reactions. I have a theory that when our body desperately needs something it has more or less run out of, it has a hard time taking it in. I definitely found that true with magnesium – I had to resort to types of magnesium that are the most absorb-able (through the skin and threonate, to make it absorb).
I’m curious if your symptoms involved the heart as well. I’d be interested in anyone’s experience in long term cipro heart healing experiences…it doesn’t seem to be the norm.
I’m now almost at 1.5 years too, and find my healing, although much better than 6 months ago, has plateaued over the last while. I’ve upped some of the supplements I was cutting back on. It is mostly my heart that seems to not have the endurance it did and some days of significant arrhythmia. I don’t want more drugs from a cardiologist, so just believing I still have the ability to keep slowly healing. I keep wondering if there is some other core piece of chemistry that was removed from my body by cipro and that my body now needs. I feel it working hard to try and right the imbalance and it is getting there. I expect there are substances that science has no way of measuring in our bodies that are important, so I’m trying to eat a great diet to fill in the gaps, even going back to eating red meat, thinking it might have something good for heart muscles in it!
Wishing you all the best too…
Hi I am Marc and i am a floxie victim and was wondering if anyone had any insight on what kind of local anesthetics are safe for a dentist to use on a floxie? could their be any reactions?
Hi Marc. Great question and something I have wondered too. Maybe Lisa has some insight?
Hello Bronwen, I was very interested to read your account as you are the first one I have read so far who has mentioned heart problems and costochondritis. I have suffered from the latter for nearly 20 years on and off. Also about 20 years ago I had a lot of Achilles tendon problems. As I moved countries in2001 (from UK to France) it would be very difficult to get hold of my English medical records to see if I was given a fluoroquinolone antibiotic so long ago but it is entirely possible.
In october 2014 I was hospitalised for acute diverticulitis and given IV Flagyl and I am pretty sure Cipro. After 24 hours I started to feel some pain in my right Achilles tendon along with other symptoms. I did not associate this with the treatment and said nothing to the nurses. After 48 hours I started to feel very unwell with chest pain and pins and needles down both arms. The nurse called my gastro consultant who asked if I had a heart condition and I explained that as I had chest pain for a few years and my father had died of a heart attack aged 40 I saw a cardiologist every 2 years but all my ECG ‘s had been normal. She rushed off and fetched the ECG machine and sent for the cardiologist. After the ECG and the examination they said everything was normal and the cardiologist said rather dismissively that I had “rheumatism” in my chest. However I noticed that sometime shortly after that one of the bags vanished from the drip stand ( the one I and am now sure was Cipro). On being discharged from the hospital a few days later I suffered an attack of tachy which lasted several hours. As I was still on the Flagyl I thought it was a reaction to that and my GP changed it to Augmentin.
In August this year my GP gave me a prescription of Cipro for a suspected UTI. Unusually for me I did not read the info in the packet very carefully. I took 1 capsule. Within 2 hours I had a couple of symptoms that I recognised from my stay in hospital – a feeling of pressure behind the eyes and the sensation that my vision was disturbed. I read the info carefully and when I got to the bit about Achilles tendon pain the penny dropped. I did not take any more and the urine tests came back negative. But the pain came back in the Achilles tendon. Not badly and it has since gone. But one week later I was taken to hospital in an ambulance with a very bad attack of tachy. They said I was in atrial fibrillation. They said it was because I was taking too much thyroid meds (as a result of blood tests after I complained to my English doctor about the costchondritis they discovered I was hypothyroid). But I am sure it was because of the Cipro. I have had other symptoms like many of the people here describe but not nearly as severely (so far!) for which I am very thankful. I think part of it might be due to having a good level of vit d as a deficiency of this was discovered in 2007 and I have Calcefediol drops which mean my liver does not have to do the first process in vit d metabolism. My GP thinks it is unlikely that one capsule of Cipro could cause such a severe heart rythm abnormality one week later but he has not read the testimonies on this site!He does recognise that I had a bad reaction to Cipro in the hospital and I suspect he is cross with the consultant not telling me I should avoid it infuture.
I have tendonitis in my elbows and thighs at the moment and find walking difficult some days but my most stressing problem is the costo. When I first started to suffer from this the pain was mainly in the lower ribs but now it is also in the upper ribs and sternum. Some of my ribs feel as if they have lumps on them like you can get on the Achilles and wrist tendons. Because costo pain can mimic heart pain due to the nerves in the area being similarly affected it is hard not to panic when the pain comes. The afib has not returned and my own cardiologist has taken me off the anticoagulant the hospital prescribed and said I can stop the beta blocker soon. That too makes you feel like death warmed up but I am now on1/8 th of the dose they gave me in the hospital. Do you have any improvement in your rib pain?
Wow. What a story. Your GP is wrong – one cipro pill can cause drastic problems, because it is not the gradual increase of cipro in your system that adds up to gradually increasing symptoms. There is a threshold that you go over suddenly (for those that have the genetic propensity), and once over that threshold, symptoms hit, and as far as I can tell, you never can go back to being able to tolerate drugs that affect the mitochondria/gaba receptors/etc again.
To answer you question – I definitely have had improvement with rib pain. It happened gradually, but most dramatically about 14 months post-cipro. I still have tenderness/squirmy feeling of being constricted, especially in the evening, when I still occasionally cycle down tog worse symptoms (ever couple of months for a week or so). We are definitely both experiencing the same family of symptoms. I find it is accompanied with upper back pain and erratic “loud” heart beats, and occasionally chest/sternum pain. And yes – it is worrying. And it is hard to figure out what is causing what pain in the chest area. I had an ECG done to make sure my heart was OK a year ago, and it showed a little degradation, but nothing to worrying. From what I understand, if the number of mitochondria in your heart are reduced, then they can’t pump blood through it as efficiently, so you can end off with angina-like symptoms (perhaps what feels like sternum pain?), but these are not caused by the usual causes, so don’t really show up in normal tests. I don’t know whether my slightly dilated left atrium can reduce again or not, but I’ve decided not to worry as long as my symptoms, on the whole, continue to improve. And they do. By the same token, I’m not sure whether the pain is costochondritis or not – this is my closest guess. I’ve also been doing some reading on fibromyalgia as the upper back pain I have is definitely caused by my small muscles being stuck in a contracted mode – a massage therapist has helped, but not completely. I understand that fibromyalgia as well as FQ symptoms can be caused by an imbalance of the sympathetic and parasympathic nerves making ones muscles and other organs find it hard to relax – thus potentially causing the heart’s irregular beats – maybe it is not the inflammation of costochondritis in the ribs but a group of over-tightened intercostal muscles? Who knows? I do know though that magnesium is extremely important in helping the body relax (as well as detox) so my advice to you would be to get some Magnesium Threonate (which goes straight to the mitochondria with the added side effect of helping the brain think better). Google it – there are not many suppliers. It takes a while to build up magnesium in one’s body, and my costochondritis-like symptoms really started getting better about 6 months after I started on this. I’m staying on all the supplements above except liposomal glutathione (good for critical healing, but I’m past that) and instead on the NAC now. I plan on probably staying on most of them, maybe reduced, but long term.
Best of luck. You have certainly identified symptoms that I found very little information on as well, so happy to share my potential theories and cures.
hello bronwen, started liposomil 3 days ago. i have a doctor around the corner who does ivs meyers, vit c, chelation h202. spoke with gary on his post and said i should start ivs as soon as possible. antioxident iv and glutathione. what are your suggestions? he thinks i had a mild reaction to the levaquin. my neuro symptoms are getting a tad worse before i stared the glutathione. should i stick with this regamin for now or start the ivs? i really want this toxin out!! please help. dan.
Bro when, my biggest problem is fatigue. What are your supplement suggestions, amounts and time of day supp’s should be taken.
Hi Terry: I had fatigue in the first months, needing to rest regularly, but now I don’t, even though my endurance is not quite what it used to be. However, I did a 10km hike today, so obviously much better. It is hard to tell which supplements helped the most. Every body is different – I’m happy to tell you what helped me.
DETOX: If the floxing is new and intense, then I’d suggest helping your liver detox the cell destruction in your body and boost the methylation cycle by finding some liposomal glutathione (look for sources on the internet) – I was on this for 6 months, but once you’re getting better, you can go on the gluthione booster of NAC (500mg morning and night).
SUPPORT MITOCHONDRIA: To support your mitochondria, I’d take D-ribose (2gr morning and night), L-carnitine OR Acetyl L-carnitine (500 mg morning and night), plus mitoQ (10mg morning – expensive, so I actually take only 5mg)
MAGNESIUM: Take magnesium! It helps! Find some Magnesium Threonate (Life Extension puts it out as NeuroMag – I take them just in the morning as it stimulates the brain – the dose is 3 pills a day totally 2000mg, but I just take one or two as I take other magnesium as well) Other good magnesium choices are Magnesium malate (helps with fibromyalgia-like symtoms, magnesium orotate – helps heart, or magnesium bisglycinate). Mag Threonate won’t give you the runs, but If you’re finding the others do, then it probably means your body is having a hard time absorbing it – often an issue when you’re very low – and transdermal magnesium oil is an option I used for a while)
B VITAMINS: I’d also take B vitamins in the most absorbable format possible – methylated folate and B12, because there is a good chance those of us that react to FQs don’t deal with B vitamins properly (that are essential for our energy-genrating methylation cycle) so we need them replenished desperately. The best suppliers I have found are Thorne Stress B (only via a naturopath in Canada) or AOR Advanced B Complex (can be bought online) – morning and night as the bottles suggest
In addition, Omega 3, Vitamin C, Vitamin D.
If you have to choose just a few things – I’d take Magnesium Threonate, Acetyl-L-Carnitine, AOR Advanced B Complex, and if you can afford it, MitoQ.
Best of luck,
Bronwen
Not sure if it’s a coincidence or not but I took liposomal gluathione last night and today I have symptoms of a cold and I can feel my heart beating a little faster. Do you think they are connected?
dear bronwen,recieved my cell test yesterday and i am low in glutamine. borderline ala, coq-10, vit b12, calcium, l-serine, vit-e and gluthione. had an gluthione injection done but backed off at 750mg doc wanted to give me 1400mg i got scared. after that had elbow pain all night and buzzing ih my finger. mag, vit-k, c, folate, fatty acids,choline, other vit b-levels all normal as are glucose,and selenium. any thoughts are welcomed. still have pins and needles along with the spasms. thanks dan.
Hi Dan: I feel like I’m not an expert enough to really provide any additional insight here beyond what I’ve shared before. All I can really do is talk about what worked for me and what I’ve read about. I expect you’re reading other people’s stories too and seeing what symptoms they have that match your own and what they’ve done as well.
I’m sure you’ll supplement for anything the cell test identifies. Maybe go at the liposomal glutathione slowly – I think you said you got some – building it up from a partial dose. It is normal to react as toxins dislodge and the immune system reacts with the same symptoms (Herxheimer reaction). I also find there is a very strong cycle of good and bad days which makes it hard to know for sure when one is getting better, but month by month, you can recognize improvement. It takes time. I also think (as do many others who have written their stories on this sight that magnesium (recommending mag threonate) and CoQ10 (in the form of MitoQ – although this is expensive) and quality B vitamins as listed above (all of them including B12 and folate in methylated forms – they work together) are really important. Acetyl-L-Carnitine might be good too. Also believe that your body is trying to heal – it is trying real hard and feed it the best diet you can. I know it is hard, but you will eventually look back on this from a place of better health.
I am newly “floxed” (Cipro) for a bladder infection, and now feeling depressed about an unknown future, and overwhelmed re figuring out which supplements might be helpful. I’m taking magnesium — CALM — stir one tsp. of powder into yogurt each morning, plus vitamin E to try to prevent tendon damage, vitamin C, and probiotics – Florajen. I have a tendon injury post weight lifting on day 4 — after I stopped the prescription (5 days, 500 mg twice per day) I had no symptoms while taking it, but 4 days later, I sustained the hand injury. Then neuropathy — burning and tingling in my fingers, toes, feet, and joint pain in my elbows. These symptoms are intermittent.
It sounds like I need something for mitochondrial repair beyond magnesium. But I don’t want to throw too many supplements at my body at once.
Also, when I went to bed tonight I started shaking; had to get up and decided to go on line to read more. My hands were shaking so much I could hardly type. But now things seem to have calmed down. I wonder if it is related to the fact that I tried to swim today — one mile. I hate being inactive. I used to be so active and strong.
Thank you Bronwen for your excellent write up. I’ll try to research the info at your links. I wonder how long this is going to happen. I’m supposed to travel to Cuba next month.
Hi Melinda: I’m glad you reached out. It is hard to be unsure of what is going to happen to your body next and what to do, and certainly, those of us that have gone through this bewildering attack on their body can support and understand better than those that haven’t. Big digital hug. I’m sorry you’re going through this. You ask how long this is going to to happen…To be realistic, it is likely you will continue to get worse before you get better. I got worse to about 4 months, before a very gradual turn around, based on supplements I found to fill gaps in my body and just simply, time. Now at nearly 2 years, I’m not quite where I was but very close – I have some heart symptoms, but probably because I did not have an optimal heart to start off with. Even if very healthy and active all my life, I am also 55 so had I been younger, I expect I’d be completely better. I wish I’d know a few things I ended off doing a few months earlier and I wonder what would have been my journey if I started them earlier. So, I want to share with you what I would have told myself then…
Every body is different and therefore will react differently to what seems to an imposed chemical deficientcy in your body. This depends on what reserves you had to begin with and my thinking is (also coinciding with some of what the Floxie Hope host has written recently) that we are likely to have certain genetic traits which can be defined (in some circles) as not being able to metabolize specific pieces of chemistry our body needs to operate well. Mostly, we don’t see these tendencies surface, as we eat well and make up the shortfalls. Then along comes Cipro, robs us of things like magnesium, folate, glutathione. As explained to me by an alternative pharmacist, our bodies are driven to survive, so modify some chemical reactions to use what is left, but much less efficiently, which produces deficit side effects, cells that die from inadequacy, and a resulting toxic build up. These manifest as varies symptoms depending on what body we started with. For me it affected my heart and tendons more than nerves, but for others it is more brain and nerves. In particular, this is true of the methylation cycle which drives the energy we need for every organ, and mitochondria. However, supplementing with the right substance (not a “medication” but increasing something the body already contains), can minimize the traits. All this to say – don’t be overly worried about throwing some supplements at your body quickly (like NOW!) – 1) you need to fill some deficits as fast as you can. And then, 2) and this is when you need to be more careful, you need to remove the toxic build up of chemical reactions gone wrong.
So, back to the top 3 things to fill deficits. A)Get hold of Magnesium Threonate – it is the only magnesium that passes right through into the brain/mitochondria. I also supplemented with magnesium oil – as a way to get it right into you fast B)If you can afford it, take the plunge and order MitoQ from New Zealand – again it targets the mitochondria as a super efficient – like 800X more than CoQ10. Personally, I wouldn’t hesitate. Vitamin E and C and Omega 3 (EPA being the important peice) are all fine, but you need something more powerful. C) Take Acetyl-L-Carnitine or L-Carnitine. The acetyl part again goes into the brain/mitochondria well, so it might be best, the non-acetyl is more muscle based.
OTher good things – D-ribose can make a real difference if you’re exhausted. It is the final “energy” product the mitochondria are struggling to make. Take methylated folate and methylated B12 – see my article above for sources – this may fill the chemical gap that caused the problem to start off with. Recently I discovered collegen – my tendons still seemed less strong and I continued to have pains around my ribs so started taking TruMarine collegen (from wild fish – no antibiotics) and have found it makes my muscles/tendons/joints feel normal so this might be a really good things to do too – certainly seems to make sense. The collegen in the tendons breaks down, so this would help build them up again.
So, for detoxing your body – if it is not yet too compromised, NAC can be good – it is a building block to help the body produce glutathione. Mine was too far gone by the time I tried it, so had to use glutathione itself. Carefully. I have written a whole bunch on glutathione and going at it carefully – see my couple of responses to Dan – so won’t repeat that here. Meanwhile, whey protein in smoothies (I use Progressive Harmonized Protein because it is antibiotic free) can’t hurt – it contains building blocks for glutathione too.
I can see from the picture beside your post that you know all about the best diet possible. I moved towards a hunter/gatherer diet as much as I could, even eating red meat again, and only enough carbohydrate to stop me from losing weight.
Gosh – I do hope I’ve helped. Best of luck and know your body is wise and trying its best to heal – it just needs some major help right now. Do not push yourself too hard – I pushed too hard and I learned not too. A good life lesson. Keep active, but each day is not the same. Listen carefully to when your body says enough. Be gentle on yourself – I finally learned how to stop and dwell in the beauty of the moment.