Bronwen’s recovery story – The “heart” of Cipro toxicity

Bronwen on Diamond Trail cropped

*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.

421 thoughts on “Bronwen’s recovery story – The “heart” of Cipro toxicity

  1. Deb November 22, 2017 at 11:46 am Reply

    Hi Bronwen,

    I believe you are in Canada, but I wanted to wish you a Happy Thanksgiving anyway and again thank you for your support and encouragement over the last few months.

    Deb

    • Bronwen Duncan November 22, 2017 at 7:04 pm Reply

      Thank you Deb! If I can help just one person I am pleased. Thanksgiving is a great time to give thanks for all kinds of things – whether in October in Canada, or November in the US. Or both!

      • J December 9, 2017 at 9:21 am Reply

        Hello Bronwen

        Would you be able to share what your symptoms of low iodine were and how you resolved them? I think I might have low iodine
        Thanks

        • Bronwen Duncan December 9, 2017 at 11:55 am

          Hi J.

          Before I took cipro I had a full blood profile testing done, as part of a Canadian study that were doing in depth health testing randomly across the country. I don’t think iodine testing is a common blood test. All my levels were great except iodine was really quite low. I didn’t really worry about it at that point at all especially as my thyroid function seemed fine, although I’ve always had a slight tendency to be hypoglycemic.

          Nearly 3 years after cipro I was trying to figure out how to tune up my healing as my resilience did not yet seem to be back, and there were a few clues in my body that I was researching. One was that my body had stopped making as much mucous. My research showed this could be connected to low iodine. Further research showed the fluoride in fluoroquinilone drugs can replace the iodine in our bodies – that the body reads iodine, bromine and fluoride the same way (they are beside each other in the periodic table) yet, iodine is essential for adequate operation for much more than just the thyroid. I also found out that the cause of poor connective tissue (I may be borderline ehlers-danlos, am very tall, have hypermobile joints, etc) may be the poor ability to absorb certain nutrients including iodine. I also came across a Facebook page that is dedicated to treating floxed people with iodine.

          All that was enough for me to start reading everything I could about iodine supplementation and it is very confusing as it is very controversial with those very for it and those very against it. Just google the subject and you’ll get all opinions. However, I started supplmentation, taking Genestra Liquid Iodine (many take Lugols), and it seemed to make a real difference, bringing back my resiliency and reducing other lingering symptoms such as rib pain. I started with less but currently still take about 2000 mcg a day, which is tons more than some recommend, and tons less than others. I cannot recommend anyone follow my example! You have to do your own research and/or talk to those practitioners you trust and make your own decision! Besides, we were all born into this world with differing bodies and body requirements.

          I have not asked for any iodine testing. At this point I’m choosing to listen to my body and follow my own research as that has been the recipe for my recovery.

          I have concurrently removed ALL fluoride from my life. My toothpaste is a natural with no fluoride, and fortunately, the tap water where I live is not fluoridated either. I would certainly suggest anyone who has fluoridated tap water, to use filtered water.

          I will probably also reduce the iodine I’m taking eventually too. I generally wait until my body feels it doesn’t want something anymore before I start reducing, and I’m not there yet.

          Hope this helps!

        • L December 9, 2017 at 12:09 pm

          Also good idea to eat a few Brazil nuts everyday. The selenium in them helps counteract fluoride which we end up ingesting no matter how careful we are. It’s in foods that are grown with fluoridated water.

        • Bronwen Duncan December 9, 2017 at 12:29 pm

          Yes – I forgot to mention brazil nuts. I put 2 in my smoothie each day. Selenium also helps the body absorb iodine.

        • J December 9, 2017 at 12:52 pm

          Thank you,
          When you mentioned not producing enough mucous are you referring to saliva or did you mean SIgA in the intestines? I had a comprehensive stool test done which showed low SIgA level and wondered if this is then related to iodine as well?
          Thanks

        • Bronwen Duncan December 9, 2017 at 4:34 pm

          Hi J

          I don’t know much about SIgA. But it seemed like I had low mucous in my intestines and I definitely had low mucous production in my nose. Sorry I can’t be of more help.

          I usually spend hours googling things right through to scientific studies, rather than ask the professionals, as they don’t always have the breadth of information at their fingertips.

        • J December 10, 2017 at 7:52 am

          Hello Bronwen,

          When you took a probiotic did it contain the s boulardi ? And did you ever take colostrum ?
          I wonder if those increase the mucous SIgA?
          Do you have any idea?
          And did you take anything for leaky gut? Would slippery elm be helpful to increase mucous too? I certainly have low SIgA and just hope anyone has any ideas about how to increase that level?
          I hear bone broth is good too and helpful to heal the gut.
          Thanks

        • Bronwen Duncan December 10, 2017 at 10:49 am

          This is moving outside of my area of experience as I never really had leaky gut issues.

          The probiotic I took did not contain s boulardi, but I have heard that this is good for gut problems.

          There was a little colostrum in the Harmonized Protein whey powder I had everyday. I just searched through google (not the search engine on this site) the words “floxiehope leaky gut” and it pulls up a number of stories that talk about colostrum helping leaky gut. Maybe they can answer your questions better than I? And searching “leaky gut colostrum” brings up all kinds of positive information. I believe colostrum is something that will not hurt you – very low risk – so I expect it is a great idea.

          And I’ve heard bone broth is great for all kinds of issues as well, but not something I have experience with.

          Bronwen

  2. Nancy Samples December 4, 2017 at 12:05 pm Reply

    Thank you for what you’ve posted. I’m in month 2 of this. I’ve already had to have a pacemaker installed, which corrected some of the problem, but also had to go back on the meds for my heart for A-fib, and it doesn’t totally control it. I’m to go later in the month to a doctor for an ablation to get me off the meds.

    • Bronwen Duncan December 4, 2017 at 9:13 pm Reply

      Nancy: Wishing you success with the ablation. And healing ahead.
      Bronwen

  3. Bet December 13, 2017 at 12:44 am Reply

    Hi Bronwen!Recently I notice that my heart arytmias going worse……Parossistic and caotic (few minutes)and Synus Tachycardia (at range 100)…I’m taking Mag,coq10 dribose and Lcarnitine….at the beginning I’ve see some good results but now It’s going worse and I’m soooooo confused…cycling of symptoms?I don’t Know but I’m really scared…I’ve done some Holter exam but It’s difficult or maybe impossible to take these brief moments……thank you for your attention.

    • Bronwen Duncan December 13, 2017 at 8:09 am Reply

      Hi Bet.

      Heart arrhythmia can be very worrying and confusing. I found I would have cycling of symptoms, and also find that symptoms got worse as each day progressed, or worse a day or two after I over-extended, and I decided to be OK with this, because the symptoms would improve again as well. However, I would always wonder if I was being foolhardy, and if I should see a cardiologist. I didn’t because I didn’t want interventions if the general trend of my heart showed betterment, and over time and various bumps, it did. However, I can’t even begin to understand how the heart works or the different types of arrhythmias. I know some are benign and some are not, and when I was much better I finally saw the cardiologist and was told the remaining premature beats I have are not dangerous. I can’t advise you to follow in my footsteps of not seeking medical advice. I expect everyone’s symptoms vary as well. You have to comfortable with your own decisions. Meanwhile, I have two pieces of advise. Remember that breathing is a tool. When we’re nervous we stress our bodies further with shallow breathing. Remember full calm breathing nourishes the body and calms the mind. The second tool I would use, is when my heart seemed particularly choppy, I would have a bath with epsom salts (magnesium) which would calm me, and often my heart too.

      I’m not sure if I’ve helped. So sorry you’re going through this.

      Bronwen

      • J December 14, 2017 at 6:40 am Reply

        Hello Bronwen,

        You mentioned before that you took calcium supplements in the past, and so have I. In my research I found that it is not advisable at all for women to take calcium instead they should be taking magnesium vit d and vit k? What have you found on this subject. is calcium bad and how does it come out of the body if you have been on supplements?
        Thanks

        • Bronwen Duncan December 14, 2017 at 8:34 am

          Hi J

          Yes – I had been taking large amounts of calcium supplement for years because I have (or had) osteoporosis, and even though they contained magnesium, I also found out, like you, that calcium supplementation is not necessary if you have dairy in your diet, yet magnesium is essential. In an oversimplified way, calcium contracts and magnesium relaxes and this is needed in every cell in the body, having a big effect on the heart, for instance.

          I eventually bought two books on the subject, the most readable being Carol Dean’s The Magnesium Miracle. In it she talks about magnesium being nature’s calcium channel blocker. They work synergistically, and I would assume that over time magnesium would help clear out an abundance of calcium in the system.

          I will post a link to a Magnesium booklet that Carol Dean wrote for Better Nutrition magazine separately. It seems this sight won’t post my links anymore, so if no link shows up below, see if you can google it.

          Bronwen

        • J December 14, 2017 at 9:03 am

          Thanks Bronwen,
          My understanding is also to take Vit D and Vit K with the magnesium for bone health. What is your thinking on that?

        • J December 14, 2017 at 9:06 am

          And I also wanted to ask you if you think your bone health has improved since taking magnesium?

        • Bronwen Duncan December 14, 2017 at 9:05 am

          That is what my research has shown as well

        • Bronwen Duncan December 17, 2017 at 11:39 am

          Hi J – I can’t be sure if magnesium has improved my bones or not but I assume it may have. The combination of taking piles of calcium for years along with having poor connective tissue may mean they are still compromised – but I’ve also read that the density of bone is not the only measure of bone health. In theory, magnesium should have helped them improve, but there are no outward symptoms of osteoporosis and I’ve decided not to get tested (no point – if I’m choosing not to take drugs and avoid sports where I can crash – downhill skiing, for example). I also take exercize classes and yoga, and hike, so figure this makes the surrounding muscles a resilient protection for the bones.

        • J December 17, 2017 at 2:26 pm

          Thanks for you reply ,
          May I ask you if you still take calcium supplements ? I have stopped and take magnesium with vit d and k . I hope it will help with my bone health . When I go for a massage , they always tell me I have some calcium deposits and just wonder if that means there is too much calcium in the soft tissues. I had a lung scan done which shows calcium plagues, so I wonder if that is related to too little magnesium and therefore too much calcium .

        • L December 17, 2017 at 2:57 pm

          I no longer take calcium either. Just mag d and k. 10000 mg d). Most of us get plenty of calcium added to foods and in greens nuts and others

        • Bronwen Duncan December 17, 2017 at 2:39 pm

          No I no longer take ANY calcium supplements but will continue to take 400mg or elemental calcium each day for the rest of my life, I expect. Apparently, if one has dairy in the diet, which I do, there is plenty of calcium anyway. I’ve heard it said that the big push for taking calcium was a dairy marketing ploy. If you have hard water, too, you’re getting calcium that way as well. IF you can, get hold of Carol Dean’s book: The Magnesium Miracle. It’s in some libraries.

        • J December 17, 2017 at 2:56 pm

          Thanks, I found magnesium L threonate from Naka it contains 48 mg elemental magnesium and mangle in magnesium L threonate 667 mg
          Is that what you take , I am not sure what the ingredients mean . Should I just look at the elemental magnesium dosage ?

        • Bronwen Duncan December 17, 2017 at 3:35 pm

          Yes – just look at the elemental magnesium amount. I took 2 of Mag Threonate in the morning – making 96 mg of this type of mag (they can keep some people awake if you take in the evening). THis is the best mag for brain and nerves and mitochondria. The recommended dose, I believe, is 3, but I was also using other magnesium. Initially, I was so completely short of mag, that my body would repel it and so had to “persuade” via skin methods of mag oil /spray and epsom salt baths along with 100mg elemental quantity or so of mag malate (some people like mag glyconate and others like mag citrate – these are all good options, but my body needed the muscle relaxing help from the malate). Over time, I cut out the oil/spray and worked my way up to 300 – 400 mg elemental amount of mag malate split over morning and evening plus the mag threonate. If I ever feel my heart is jumpy or my body achy, I still have an epsom salt bath as well.

        • J December 17, 2017 at 3:50 pm

          Are blood test for magnesium not very accurate? What would be a good test for magnesium or calcium levels?

        • Bronwen Duncan December 17, 2017 at 4:13 pm

          Hi J – I understand that blood levels of magnesium are basically irrelevant as 99% of your magnesium is in your cells, not blood. However, I am not an expert – my decisions for my own health were based on the online and book research I did and I interpreted this research for my own needs which may or may not be your needs. It is really important that you own your own decisions, not just follow my advice. I am not a health professional and feel it is wiser to directing you to good resources which is why I directed you to Carol Dean. Recently, I have been unable to put links in my email or they will not post, but please look up her information, including information on the types of mag test – there is much online if you can’t get hold of the book.

    • Bronwen Duncan December 13, 2017 at 8:35 am Reply

      PS. Bet – I now also remember that my heart did not seem to be getting better at about the 5 or 6 month mark, so that was when I decided to progress my treatment of oxidative stress in my body – boosting the glutathione in my liver to be able to clear out the mess caused by cell death, etc, that the body was unable to deal with.

      Although I initially tried NAC which is a glutathione booster, I found a natural pharmacist who explained this can’t help if your methylation cycle is actually broken, and that I would need to take some form of glutathione itself. This is controversial as well, as some people have found (e.g. those with amalgam fillings) that the glutathione can dislodge many toxins which overwhelm the body. I have amalgam fillings and certainly had a 2-week long herxheimer reaction which I just decided to stoically suffer through, where things got worse before they got better, as the body reacts to “loose” toxins that are dislodged from where they have been hiding on their way out through the kidneys and liver. But finally with glutathione the liver can actually handle them. I took lipomsomal glutathione and others on this site have used glutathione IV. Glutathione pills are basically useless as the glutathione from these does not make its way to the liver. Again – there is controversy – I’d read up everything you can on this site – within the older posts on my story (a lot of earlier comments), and on others, before you make your own decision regarding this.

      Bronwen

  4. Bet December 14, 2017 at 7:24 am Reply

    Yes I have amalgams too…..I have taken oral gluthatione at the beginning but when I had extremely bad headache with this I ‘ve stopped to take it and the headache went away immediately…maybe the mercury in my amalgams arrived to the brain …I really don’t know….I want to take them away(amalgams)but now I ‘m unwell and I don’t want to stress my body so much….
    I’ve made an Holter exam and this is ok….benign aritmia…but now I really don’t know….maybe I’ll have another soon.

  5. Leah February 21, 2018 at 5:19 am Reply

    Thank you so very much, Bronwen, for sharing your story and for titling it so aptly, making it easier to find. It is my story exactly, almost to the T. It is such a relief to find other people articulating what I experienced physically, mentally, emotionally. And a second, even greater relief to hear it is possible to recover.

    I got floxed just recently, in December, after three terrible days on Cipro for a suspected UTI. It gave me the strangest, most intense insomina…nothing like that had happened to me before — but even though I didn’t sleep, I didn’t feel tired either. Dizzy and foggy, yes, but wide awake. Shortly after, random leg/chest/abdominal pains would take turns appearing in my body, from burning to shooting, leaving for hours only to return later. Alarming, but they passed, so I kept hoping it was just a short-term phenomenon.

    By the fourth night I finally went to the ER for the chest and abdominal pains (mostly tachycardia and arrhythmia). I thought I was on the brink of a coronary. But the ECG, chest Xray, bloodwork and urinalysis showed everything was “perfect” which was, as many sufferers on these forums have said already, the scariest part of all — the problem was “sub-clinical” (a term I learned much later from my naturopath) and I was totally on my own.

    What worked for me? Lifestyle makeover, mostly: throwing away my fluoride toothpaste/mouthwash and going all-natural, throwing out my entire fridge/freezer/pantry and starting over 100% organic (agricultural pesticides have fluoride, and the more processed the food, the more fluoride is in it), throwing away my non-stick and aluminum cookware (which have fluoride – go stainless steel & cast iron only), no more drinking tap water, bottled water with 0 ppm of fluoride only (the city I live in adds fluoride to the public water supply; Britas don’t fliter it). HMF Intensive probiotics, D-ribose as recommended by you, lots of rest and yoga. Anything with a “Q” in the name I don’t take, out of quinolone fear.

    It’s been a budget-busting, medical-system-faith shaking, heart-sickening ride, but I’m 70% of the way back. The effect of reading so many tragic stories on here is that I feel fortunate I got off so lightly. I can control my toxicity symptoms mostly with diet.

    Very interested in trying IV glutathione and infrared sauna next. The journey continues.

    • Bronwen Duncan February 21, 2018 at 8:22 am Reply

      Hi Leah – I’m so glad my story has been of some help to you. You obviously are being very proactive and listening to your body to find out what works. Don’t forget to take magnesium (malate, citrate, or bisglycinate) if you’re not already. I created a chart at one point that identifies at least some of what cipro does to the body. I can’t seem to post links, but search this site for “Fluoroquinolone Mechanisms Chart” to find it. Also later in my journey, I discovered that iodine seemed to be a big help to me – discussion above on Dec 9.

      Wishing you healing.

      Bronwen

  6. Andy. February 22, 2018 at 2:21 am Reply

    Hi Bronwen,

    I have been reading your post with interest. I highly suspect I have damaged mitochondria from using ciprofloxacin ear drops 4 times a day for 15 days. I was prescribed them back in August 2016 for cholesteatoma and an ear infection, unbeknown to me I had no ear drum and the drops were largely washing down my eustatian tube into my mouth. I would get a strong aftertaste of the drops and would spend 10-15 minutes each time rinsing my mouth with water and spitting out to get rid of the taste. Within a week or two of finishing the course I began experiencing extreme thirst and dry mouth, basically an extreme lack of saliva. Still now I suffer from this problem of lack of saliva. For a long time I suspected I had sjogrens syndrome and hadn’t connected the damage to the cipro, but all my bloodwork and tests indicate no autoimmune issues. Looking back now it seems glaringly obvious that the cipro has caused this. I googled cipro and damage to salivary glands and it even comes up with scientific studies that were done in rats that prove how cipro basically can destroy salivary glands at the mitochondria cell level.

    I do take ubiquinol coq10, I have done for almost a year as when I suspected I had sjogrens I had read on a sjogrens forum how ubiquinol helps to stimulate and increase saliva flow in people who have dry mouth, and it does help, although I still don’t produce enough and it is particularly pronounced at night where I wake up constantly needing to sip water. Not only that I do worry about my teeth.

    I was very interested in the supplements you list that you say have helped with mitochondria function. In particular Liposomal glutathione. Can that actually help repar mitochondria in some way or does it hust help rid out the damaged stuff and toxins. What is your take, if I do have as I suspect damaged mitochondria impairing my salivary glands is there really any way back from this? If I do nothing could it get worse over time as I’ve read how damaged mitochondria can replicate over time, I guess leaving me with a dryer and dryer mouth as saliva flow decreases more and more. Apologies for all the questions, I am somewhat a novice this is all new to me I have been reading lots online, some of which is very hard to understand.

    I did purchase some mitoq also but haven’t yet taken any.

    Kind regards,
    Andy.

    • L February 22, 2018 at 10:42 am Reply

      Hey Andy, I too had extremely dry mouth post Cipro…one of over 30 side effects. Just wanted to say that mine eventually just went away. Now I have had over 100 IVs over the last 3 years, but the dry mouth went away for me in the first year. (Now there are actually times where I produce too MUCH saliva.) I also just got an order of MitoQ. I am afraid because of continued fatigue and breathing issues that I have damaged mito. It’s so expensive, but they have a money back guarantee that if you buy the three-pack and at the end of that time you are not satisfied, you can return the empty bottles and get a refund less a shipping fee…so I am doing that. I just started less than a week ago but will post when the time is up if I feel it helped. (I had been on ubiquinol 100 2x day.) I have had a number of glutathione IVs and “pushes” and do believe they helped. We all react so differently though, it’s hard to say.

      • Dee February 22, 2018 at 10:55 am Reply

        Hi L!! I haven’t chatted for awhile with you lately!! How have you been doing? Are you still busy acting again?? I hope you feel like you have your life back as it was!! How is your tinnitus doing? Any better? I am starting into my 9th month and slowly improving as time goes on! I am mainly dealing with bad sleep, anxiety and a low buzzing tinnuitis in my ears. All of those symptoms have improved but still have a ways to go!! I am dying for a glass of wine but think I will wait until the year mark! When did your sleep and anxiety feel like they were close to normal again?? By the way I have both dry mouth and dry eyes which have both made some steady improvement. Not completely gone but better! I hope all is going well for you now!! I am hoping by a year out that I feel mostly recovered!!🙏🏻 Dee

        • L February 22, 2018 at 11:08 am

          Hi Dee, Well I did a show at Christmas with a fantastic cast–including some Broadway actors. Sadly, I had major breathing problems and most of my paychecks went to IVs! I was using my rescue inhaler, which I hadn’t used for years, five times a day. But I got through. I have tried so many different supplements and I am not sure which one really helped, but I am down to 1x day for my rescue inhaler. (I think it was something called black seed oil. Truly disgusting. Tastes like motor oil.)

          I had my first post-Cipro wine at just around the one year mark. I can no longer tolerate as much as I could before (which is probably good) but now I have a glass of wine about 4 nights a week—and the occasional single-malt scotch!

          My through-the-roof anxiety subsided around 14 months, although I think it is still a tad higher than pre-Cipro, but not too bad. My insomnia improved a bit around 9 months and back to normal around a year. I still have occasional bouts of insomnia, but I did before too, so I am pretty much back to normal on that.

          the tinnitus is making me crazy. Like cicadas 24/7. Constant hum/buzz. Sometimes it’s really loud too. I got so excited because I read about a study on mast cells (and I think a big part of the breathing issue now is constant post nasal drip which ends up in the lungs, thanks to damaged mast cells) so anyhow,this study said that they gave 3 mg of melatonin to a group for 30 days and not only did most see an improvement with the mast cells, many had their tinnitus improve! I was so excited! Well, the first night I didn’t sleep at all, and the second night, an hour after falling asleep, I jolted awake with night terrors. IT was awful. Couldn’t wait to get the lights turned on. So I ended that experiment. I know 3 gr is a high amount for melatonin, but it is what was used in the study…

          I also had dry mouth and eyes and those are much improved…even my floaters are SO much better. Unfortunately the vision in one eye is much worse …went from 20/25 to 2/65…One thing I still have though is really dry skin esp on my hands. They almost feel like emory boards.

          Glad you are doing so much better!

        • Dee February 22, 2018 at 12:24 pm

          L. I don’t know if you remember but I took a “half” mg of melatonin about 3 months out and had a horrible reaction!! I was up all night, heart pounding and terrible anxiety! The next day I developed horrible loud ear noise throbbing and buzzing. It was actually brought on by the melatonin!! And only a half mg of it!! It never has stopped since then but it has gotten a little more quiet and less noticeable. I pray that in the next few months it will go away! Didn’t your tinnuitis come on as a late symptom?? I won’t touch melatonin with a 10 foot pole the rest of my life!!! How do you do with the wine? Do you get spacey or foggy?? I know you drink a low fluoride brand from trader joe? What brand do you drink? I want to try half glass but want to get low fluoride!

        • L February 22, 2018 at 12:44 pm

          You know I’m not sure exactly when the tinnitus started. I had SO much going on, esp with the gasp for breath and visual/olfactory nightmares going on…it could have been going on for a while before I actually noticed it. In fact, one day I was sitting at a friends house…this was like 10 months down the road. I asked her if she hear total silence when it was quiet. I just became aware of this kind of hissing/buzzing sound and thought that it was like ambient noise. So I think it was there, I just didn’t realize it right away. Plus I had always been under the impression that tinnitus was only a ringing sound, which I had heard briefly on various occasions. Anyhow, it has definitely gotten stronger over the months.

          RE the wine…It just feels totally normally. I just notice that whereas before I would want a second glass, now I rarely do. I have to say, that first post-Cipro glass was nice for a couple reasons…it wasn’t just that I enjoy having a glass, but it made me feel like like was getting back to normal again.

          Trader Joes no longer carries the one I really liked (A French organic), but this is pretty good. IT is called Albero. It is a Spanish organic wine. There is a red label and orange label and I think I like the orange one a bit better. They are both like red table wines. I have had California wines on occasion, and honestly I felt no differently afterwards. I just thought since I am so careful with drinking nonfluoridated water, it is probably better if I also get wine from a country that doesn’t fluoridate since grapes are like 85% water (MOST of Spain does not. ) Also, I have read that even organic wines from Ca have been found to have pesticide residue. But if you are not so set on an organic wine, I would just try a wine from any country that doesn’t add fluoride (eg France, Germany, Italy) —which is most of them now! Here is a list f ones that still do, and Spain is on there, but only 11 % I tried to find out if the place where this wine comes from is in that 11% but was not able to. http://fluoridealert.org/content/bfs-2012/

        • Dee February 22, 2018 at 2:35 pm

          L. Thanks for the info on the wine! Although it is my understanding that the reason Calif wines are so high in fluoride is because of the pesticide they spray on the grapes contains fluoride so it absorbs into their skin and ends up in our wine. I read somewhere that Washington state doesn’t use that pesticide because of different pests so maybe fluoride free wine from Washington state? I will try to research that more! I hope your ears improve! I understand how annoying it is! Hopefully with time your ears will quiet down! Mine too!!🙏🏻🙏🏻

    • Bronwen February 22, 2018 at 9:43 pm Reply

      Hi Andy

      Why are you holding off on taking the MitoQ? It is basically a form of CoQ10 which has been chemically changed so that it can enter the mitochondria much more efficiently. I switched from CoQ10 to MitoQ as soon as I knew it existed. Of course it is quite awfully expensive!

      I am not familiar with saliva issues with Cipro, however, I am with mitochondria issues, and I believe everyone gets affected in differing parts of their bodies due to things like genetics. For instance, my brain was less affected than many, yet my heart much more affected.

      Liposomal glutathione – will it help the mitochondria? Indirectly. 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. So, will liposomal glutathione help mitochondria – not directly, but it will clear up the mess so the mitochondria can start doing their job better. 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 have another suggestion as well – later on I found a big improvement by taking iodine and it seems there may be a connection to saliva – I take Genestra iodine drops, but many people swear by lugols. I’d started seeing a number of comments about low iodine and Cipro because of the fluoride in the Cipro, as a fluoroquinilone, going in and replacing the iodine in the body. Apparently, bromine, iodine, and fluoride all sit beside each other in the periodic table and the body “thinks” they are the same thing. Therefore, if you take fluoride into your system it starts replacing the iodine, which is necessary in many organs, not just the thyroid, and this actually stops some body processes from being able to work well! I can’t seem to post links on this site without my post disappearing, so please google “Iodine in evolution of salivary glands and in oral health” and I’m sure there’s lots more information to find as well. Iodine supplementation is controversial as well, but from my reading it seems a huge percentage of our population is short in iodine and the Japanese diet is vastly higher in their iodine intake. Anyway, once again, poke around the internet and come up with your own conclusion. I can’t advise you take it, just that you research the possibility. If you do, you also should take selenium – very easy to do in the form of a couple of brazil nuts each day.

      I have also got the point where I think everyone who has any body problem should make sure they take magnesium, a full-spectrum B complex (with methylated forms of B12 and folate) and probiotics of some kind. My article above addresses all these.

      I know what you mean about it being hard to understand so much of the technical medical/natural practitioner information found online. It takes hours of digestion, and sometimes it is overwhelming. So good for you to reach out.

      Will you heal in time? – yes, I really believe the your body is trying very hard to do so right now. You just need to give it every chance by supplying a few ingredients (pieces of chemistry) which have been robbed from it, and by eating as well as you possibly know how to fill in the other chemistry gaps that we can only guess at. And of course TIME is what give our bodies the opportunity they need to rebalance too. Wishing you healing,

      Bronwen

      • L February 22, 2018 at 10:22 pm Reply

        Bronwen, I suspect if we took pictures of each others vitamin shelves they would be hard to tell apart! My ND started me on iodine very quickly (3 years ago and I still take it–iodyzine); I also take a b complex and 5-mthf since I was found to have that genetic mutation; I started taking mitoQ and am doing the 3 month trial (had been on ubquinol). I take anywhere from 400-600 mg of magnesium and I have had a LOT of glutathione in IV, pushes, liposomal…I also take NAC, a precursor which also helps with asthma. Good informative post!

      • L February 23, 2018 at 9:26 pm Reply

        well, I just googled cipro and dry skin, and you came up! I have posted on your story before but just rereading—we have SO much in common. had horrible pressure around the bra area. It actually hurt to wear one, and I could not have a seat belt either—I had to hold it away from my body. I also had heart issues—still have fluid around heart three years later (but no other heart issues.) But for months i had crushing horrific chest pain. Several nights I was certain I was having a heart attack but purposely did not call an ambulance because at that point i really was hoping it would kill me. (I gasped for breath for months (a researcher suggested mitochondrial damage to the heart muscle), had major vision damage and terrifying oflactory nerve damage, so i just wanted out.) Also had pain, tendon issues, gut issues (lost 1/4 my body weight), a lot of what you had. ( I did have long term severe depression, anxiety, paranoia). Anyhow I really related to many of your side effects. I am now three years out and still saddled with several but light years from where I was.

        Anyhow, I just read about you using coq10 in your moisturizer. Like you the skin was the least of the problems, but here I am three years out and sometimes it feels as if there is zero moisture— in my hands esp. Just feels so strange. Do you still get that dry, dry, moistureless feeling?

        • Bronwen February 23, 2018 at 10:53 pm

          Hi L – yes our floxed bodies had many things in common. I’d forgotten I put CoQ10 in my moisturizer!! Yes – my skin feels very dry, but I have two other things going on for me which mean I can’t tell if this continues as a cipro reaction or not. Not only am I mid-50s so menopause causes a drier skin, but I also moved from living within a very moist environment on Vancouver Island of BC, Canada to a very dry environment in Whitehorse, Yukon. So, these days I’m actually pouring moisturizer on my face and dealing with cracked thumbs – but that also seems commonplace here. Wish I could be more helpful!
          Bronwen

        • L February 23, 2018 at 11:01 pm

          Yeah this is weird. Not just normal dry skin but it feels like cardboard. Like there is virtually zero moisture in the skin. And it comes and goes too. Anyhow. May give the cq10 a try in the lotion. Of just buy lotion with it in it

  7. Andy. February 23, 2018 at 4:19 pm Reply

    Hi Bronwen,

    Thanks so much for the reply and explaining in more detail about the role of liposomal glutathione, and for the words of encouragement. And to all the others here who have commented, it’s very much appreciated. From what I have read online it does appear cipro can cause salivary gland damage, partly through an assault on the mitochondria, studies have shown this and I guess my taking cipro as ear drops and having them indirectly entering the mouth would have put me at great risk of this. It is sad but also very encouraging to hear from others on here who have been left damaged by cipro yet have gone on and found ways to heal and help their bodies to repair the damage done by this awful drug. I really do believe we can make our situations better and heal from the damage done by cipro.

    I had looked into iodine somewhat and how the fluorine in cipro has a tendency to bind to the iodine receptors in the body. Apparently the salivary glands require iodine to secrete and function so yes I think it would definitely be an avenue for me to look into. I do think my problem is largely down to damaged mitochondria but I don’t doubt that having had the cipro drops in my mouth that the fluorine would have bound to receptors in the oral cavity, potentially disrupting the saliva function also. I have ordered some Lugo’s iodine, some idorol tablets and selenium, I will see how I get on. Like the Liposomal glutathione I will have to go slow and steady as you say because of the potential for a Herxheimer reaction.

    Thanks everyone for the advice, encouragement and support. All the doctors I’ve discussed this with have flat out denied that cipro, or any antibiotic for that matter could cause damage to salivary glands. I dont believe that for one moment. It can become very discouraging when doctors brush you off and just dismiss your health problems as anxiety or treat you like your almost making these things up. Unfortunately we are the ones left damaged and have to live with the consequences. I’m glad for sites like this, it makes you believe there is hope.

  8. Where There’s a Will There is a Way March 2, 2018 at 4:44 pm Reply

    Omg I have been floxed too! I am an Australian who was given this horrible medication to treat typhoid fever when in Mexico. This was late 2015. Fast forward I thank goodness found an amazing gp who was convinced my issues, so called oa of wrist neck and knees is more likely tendons. Damn I had been doing intensive yoga for twelve months thinking my health needed increased exercise. Clearly this escalated the inflamation. My gp identified I was under methylation and add to that my copper levels were very high. I was not absorbing any nutrients and prescribed compounding medicine to address the issue. My blood levels over all were good though he wants them optimised. This is now week two of my cocktail of supplements all of the above you described plus b6 !

    I am hoping and praying my body can recover and I can continue on my journey without inflamation and pain.

    If anyone can add or guide me here in Australia I would be grateful as I too cannot involve all my family and friends with my fears and stress. Kes

    • L March 2, 2018 at 5:04 pm Reply

      glad you found out at least now. and you were very fortunate to have a gp who believed you! do you know how rare that is? hope you find a fellow aussie on here

      • Where There’s a Will There is a Way March 2, 2018 at 5:41 pm Reply

        Yes I don’t think he realised it was flox he is not available till Monday. But he did believe it was not degenerative or ra and did not pump more prescription drugs. Essentially my bloods are good except for what I described but the inflammation and feeling as tho I have needles,
        big needles in my knees is a
        a killer . Thx for response

        • L March 2, 2018 at 6:02 pm

          Without going into my dozens (many terrifying) side effects, I also had popping in my knees, back, hips. I later ended up having torn meniscus. One of the great things I found for this was an injection of prolozone in each knee, which helps your body heal itself naturally. I mention this not knowing what is causing your knee pain. When you go to the doctor you might want to take copies of these “dear doctor” letters written in medical-ese by doctors who themselves were floxed. https://floxiehope.com/tag/dear-doctor-letter/

    • Bronwen March 3, 2018 at 2:02 pm Reply

      Hi Kes:

      I am so glad you found this site. Definitely read a bunch of stories and reach out to people who seem to have had a similar journey. We all have different paths to healing but the very large majority of us do. The fact that you’ve still been able to do yoga shows me that you’re not only going to be OK but that you have the right attitude to try to heal yourself!! It just takes time, and faith that your own body is trying its very best to heal itself, and the need to get the right nutrients which were stolen by the fluoroquinilone back into your body! Listen to your body, and realize that healing can be a slow process, with bumps that seem to cycle up and down, but month by month you will see progression.

      I totally understand how alone you can feel as well, because you’re not wanting to worry the people who love you most. In my experience, as well, they are unsure whether to believe the extent of what has happened as it seems totally absurd and outwardly, we don’t look like our bodies have been devastated – it’s like an invisible ailment. Even medical tests don’t show up much! It wasn’t until I started showing my family some of the new fda warnings that I really had their attention. But even then, how do you ask for help or support without worrying them too much? In the end I learned how strong I was. It is just day by day and you’ll find you have abilities you never knew about! Listen to your body and just be gentle on yourself some days!

      I am also pleased you seem to have a receptive GP that understands methylation. It is a very complicated chemical process that supports energy production in every cell in the body and is also therefore connected to mitochondrial health. I ran into an “alternative” pharmacist who recognized that my methylation cycle was not only limping but very impaired/broken. He explained that when certain pieces of chemistry in the body are missing, the body will figure out much inferior work arounds, using the chemistry/nutrients that is available to it. As we know, fluoroquinilone drugs pull certain pieces of chemistry from the body (you might want to reference the chart I created of these affects – I can’t seem to post links so within the search box on this site look up: “Fluoroquinolone Mechanisms Chart”). My theory about being floxed is that some of us (genetically, perhaps) have less of these essential nutrients in reserve, and so can’t ride over temporary depletion. This also would explain why those who have taken a fluoroquinilone drug before and were fine, suddenly are not with the next dose – they’ve reached that critical tipping point in their bodies. Of course, going from this theory, it is also interesting to try to figure out what it might be in one’s own genetics which created a nutrient depletion. Certainly, I’ve always eaten extremely well, so it was not for lack of eating a balanced diet, and I know this is true of some others as well. I’ve also discovered a really useful explanation of methylation – on google, look up “Kendal Stewart methylation overview for professionals pdf”.

      To fix the methylation cycle and indeed mitochondria and floxed symptoms, you need to do two things. You need to give your body the nutrients/chemistry it needs so it can retain normal functioning, and you need to help your body mop up and dispose of all the mess (oxidative stress) that has built up by broken chemical reactions. And really there is also a third – patience!

      First- adding back the chemistry bits which have been stolen. The cocktail of supplements you’re starting is awesome, but you will need to continue supplementing when these end and maybe during as well. Most important if you’ve been really compromised in my opinion are magnesium, MitoQ, a great B complex ad possibly iodine.

      Magnesium – As I wrote in my story my body needed it so badly to begin with it couldn’t really deal with it, and so I had to start with epsom salt baths and magnesium oil (spray) on the skin, graduating to Mag Threonate and another mag that can be easily aborbed – Mag Malate, Mag Citrate or Mag Bisglycinate. Mag Threonate is unique in that it enters the mitochondria and brain where other mag can’t. I started on 100mg malate and 50 mg Threonate, and very gradually worked up to 400-500mg malate and 100mg Threonate.
      MitoQ – This is made in New Zealand and is very expensive, but well worth it. I started with half dose, and then took 10mg.

      B complex – As the methylation link a mention above mentioned, VERY important is Folate in a form which is already methylated – meaning the body does not need to convert it from an unusable form before using it – and some bodies are not able to well as they have MTHFR gene issues (one potential cause of reacting to fluoroquinilones!) A methylated form of B12 is also importanat. I’m in Canada and we have an AOR advance B for the methylated forms of B12 and folate plus a well-balanced selection of all the other B vitamins. Thorne puts out a good one too but it is more expensive, and I expect there may be something else available in Australia.

      Possibly important is iodine – I don’t know as I got to it at year 3 in my healing and it seems to have been the final step. Iodine pushes out fluoride and if you are fluoride poisoned it may help. I started at 750mcg and now take 3mg where I may stay. Do your own reading on iodine as it too is controversial.

      The best thing it to listen to your own body, because if upping the amount of a supplement starts improving a chemistry pathway (such as methylation) that has been compromised, it can also releases toxins that have built up and this can make the body react against them. This is called a herxheimer reaction because the body is trying to repel them, even as they are loosened from hiding places on their way out. So, slow and steady with all changes! Up doses slowly.

      So how do you help the toxins and oxidative stress leave? You have to pump up your poor liver and the most important factor here is glutathione– Whey protein is great as a glutathione precursor, but probably not enough on its own to deal with the oxidative stress in your body. NAC (N-acetylcysteine) is a protein precursor to glutathione, but it can only work if you still have some glutathione capability. I had to resort to taking glutathione itself. This only works if it is liposomal glutathione (wrapped in fat so it makes it to the liver before the body digests it as just food) or IV glutathione. I found NAC did not work until glutathione could clear off some of the oxidative stress first. There is much controversy on this site about glutathione, but all I can say is it was essential to my healing. But again, we are all different so please read about the controversy in the comments on my page and in other stories too, and make up your own mind on what is best for you. Some people have found (e.g. those with amalgam fillings) that the glutathione can dislodge many toxins which overwhelm the body. I have amalgam fillings and certainly had a 2-week long herxheimer reaction which I just decided to stoically suffer through, where things got worse before they got better. I took 450mg of liposomal glutathione initially twice a day, cutting down to 250mg one a day after a few months. Then I moved to NAC which I took 1000mg a day and eventually half and then none.

      So, there’s a novel of advice for you. Hope some of it is helpful and hope you find some calm as you continue to heal!

      Remember even a smile is a step to healing.
      Bronwen

      • L March 3, 2018 at 2:20 pm Reply

        All great advice. And actually I recently started the MItoQ (yes it is expensive!) but if you do a three month trial and feel it didn’t work, they will refund. Unfortunately their site was recently hacked so my credit info may have been taken. They seemed to get on top of it pretty quickly. (so now I imagine they are super secure! good time to order 🙂 )

  9. Genevieve March 2, 2018 at 5:56 pm Reply

    Hi Kes, If you are on FB and join the Fluoroquinolone toxicty group, you can do a search from there for Australians and you’ll find lots of them. I’m glad you figured out the culprit. Knowing the cause of this is the first big step in getting better. So sorry for the big needles in your knees. You’re in good company, though.

  10. Irene March 5, 2018 at 7:20 am Reply

    Have you, or anyone, ever had your immune system tested -IgG, IgM, IgA, ESR, and other blood tests done? Especially your free light chains? Were your test results normal? I had a severe reaction to nitrofurantoin (macrobid), 5 day course, also had been exposed to cipro in 2012, my end reaction is similar to those who have been floxed. However I may have developed an illness called AL amyloidosis as a result. Everything that happened to me was sudden, drastic.

    • Bronwen March 5, 2018 at 8:14 am Reply

      Hi Irene: I am not familiar with those blood tests. As far as Amyloidosis goes, this is not the first time I’ve seen it in conjunction with a cipro reaction. My father was told he had amyloidosis. At that point, no one knew his body had been struggling must awfully with a cipro reaction for years. Cipro can cause cell death. Amyloidosis is when fibril proteins build up within tissue in various parts or organs of the body. I’ve always suspected the two are connected, but, of course, I am not expert! So sorry you are going through this.

      Bronwen

      • TM March 5, 2018 at 12:27 pm Reply

        Hi Bronwen, Thank you for responding. I also think there is a connection between adverse drug reactions and amyloidosis. I use to be healthy. I will write back, share my story, and would very much appreciate any advice or info you are willing to give or share. I am incredibly ill, my heart symptoms are progressively becoming worse, and I honestly at times don’t know how I’ve survived the pain and torture this long, it’s been 21 months for me so far. Thank you.

        • Bronwen Duncan March 5, 2018 at 7:55 pm

          Hi TM: I am writing a long hopefully useful post, but have to run out to an evening meeting. I’ll post in a few hours.
          Bronwen

        • Bronwen Duncan March 6, 2018 at 12:34 am

          Hi TM/Irene:

          Ugh. I’m so so sorry this is happening to you. It is scary and hard for others to really understand. I’m so glad you’ve connected with the community of people on this website.

          I have to agree with L’s post below where she says if you possibly can find an ND or Functional Practitioner who knows about fluoroquinilone reactions if you can and not to waste time convincing doctors. I couldn’t – I had to get bits of information from numerous places, one of the most useful being this site.

          Before I give you my suggestions I need to warn you that as you sound like you are in rough shape, when things start improving it may seem like they have got worse temporarily. The body is amazing in that it can be driven to use different biochemistry tools for some of its most basic functions such as the energy-producing methylation cycle. These keep you alive, but take a toll as these are not efficient substitutes and cause a back of oxidative mess in your body. Cipro robbed you of pieces of chemistry in your body (such as magnesium, iodine, glutathione). Once the body starts getting what it needs through a supplement that it was lacking, things start working a bit better, but then all this “garbage” is set loose and the body can react to it on the way out. So as you begin to heal you may find it a bumpy ride – this “herxheimer” reaction. So the trick is to start slow and up the amounts of anything that can potentially help you carefully, always listening to your body. I can only advise you what worked for me, and what I’ve discovered through research. However, I cannot feel what is going on in your body. You have to do your own research and make your own judgement about each step of your healing. Coming to this site is an awesome step!

          First, let’s support your heart. The heart is the organ in the body that has the largest concentration of mitochondria. It seemed floxed people have mitochondrial dysfunction – why is still under debate. But, it is no surprise that what you do to help your heart will also help other symptoms of being floxed. (My heart was also my most worrying symptom. My whole body shook to my heartbeat as well. I couldn’t sleep on my left side for at least a year, because each beat would shake my body so much. I had severe arrhythmia and pain in my chest as well. At one year, I was OK, at two years, not quite better, and at 3 years, really nearly as good as ever. Now, my heart just seems to have a slightly enlarge left atrium and some early beats too.)

          There is one great resource I’d like to direct you to: I cannot post links on this site for some weird technical quirk, but if you look this up on google you’ll find it useful: “Stephen Sinatra the awesome foursome”. You need everything he says: Magnesium D-ribose, CoQ10 (only I strongly suggest in the form of MitoQ) and L-carnitine. So now a little bit on each:

          If you’re not taking magnesium, start! Magnesium is incredibly important for hearts – when people have heart attacks, they put them on a mag IV. All magnesium options cannot be absorbed well. Some are quite useless. The best are mag citrate, mag malate (which I take), mag bisglycinate, mag taurate (good for the heart), or mag threonate (and for the brain and mitchondria – which I also take). Some bodies like one better, some bodies like others better. I would definitely take mag threonate. Start with one capsule (full daily dose is 3 at a total of 144 mg). You can find this on amazon if it is not in your local health food store. Also take one of the other mags, starting at 50-100mg elemental mag amount (only a portion of each supplement is mag as the rest is the carrier that enables it to be accepted by the body- it should hopefully say on the side of the bottle the elemental mag amount – and work up to 300-400 elemental mag amount over a couple of months. If your body rejects it (diarrhea) then you need to start getting it in your system through your skin instead of your mouth. You can by rubbing magnesium “oil” or spray onto your skin a few times a day and take epsom salt baths. Then very gradually add in the mag by mouth. Just a little warning: And remember, when your body needs something desperately, it will go a bit bananas when it gets it. I had two disturbing short bouts of tachycardia (fast heartbeat) for 20 minutes or so. I simply deeply breathed and walked slowly, but also now know that if this happens, drink a whole bunch of water to clear the magnesium out a bit – it is all water soluble.

          D-Ribose. YES! Start right away, and you don’t have to be quite so careful with dosage. This is basically giving your mitochondria the energy they need to function. I felt an immediate kind of glowing feeling in my heart when I took my first dose – it felt very welcomed!

          Also take the L-carnitine. There is Acetyl-L-Carnitine which is apparently better for the brain, and straight up L-carnitine which is better for the muscles. I went for the brain variety! Start with 500mg and go to 1000mg.

          MitoQ is the CoQ10 that has been altered to get into the mitochondria. It is made in New Zealand and is very expensive, but well worth it. I started with half dose, and then took the full 10mg.

          OK – so now you need some major support in clearing out the oxidative mess in your body. You have to provide your liver with what it has probably run out of: glutathione – Although whey protein and NAC (N-acetylcysteine) is a protein precursor to glutathione, when things are really off the rails, I expect neither would be enough to help move that oxidative mess out of your body. At your level of compromise, oxidative moderators like Omega 3 and Vit C are just not going to cut it. This is where a ND who has experience in IV glutathione or other oxidative cures might be really useful in your case – I would really like someone who knows what they’re doing with glutathione or similar options to physically see you, monitor you, and help you. It seems like “L” has some experience with this and may have some additional insight to share. As for me – I reached for liposomal glutathione (wrapped in fat so it makes it to the liver before the body digests it as just food) instead of IV glutathione but I expect my case was not quite as advanced as where you are now. I took 450mg of liposomal glutathione initially twice a day, cutting down to 250mg one a day after a few months. Then I moved to NAC which I took 1000mg a day and eventually half and then none. There is much controversy on this site about glutathione as some people have felt it brought out mercury that had been hiding in the body from fillings, etc., causing an unwanted reaction, but I know for me, it was essential to my healing. But please read about the controversy in the comments on my page and in other stories too, and make up your own mind on what is best for you.

          I also believe you should take a good quality B complex making sure both the B12 and the folate are methylated forms – meaning they are already chemically ready for your body to use, as some people do not metabolize them properly in their usually synthetic form. The Thorne Stress B complex is excellent.

          Eventually, I think you should consider iodine as well. I can tell you more about that in another post if you like.

          So, hope this is of some help. Please believe your body is trying hard to fix itself. It just need the right help right now.

          Sending you healing thoughts,
          Bronwen

    • L March 5, 2018 at 11:30 am Reply

      Hi Irene, I was severely floxed. I went back and looked at blood tests. My Igg, IgM, IgA and they were all normal. (Only Ige was high but that was no surprise. since I have been plagued with allergy problems my whole life. My hs-CRP was high initially but went back to normal after months of different supplements. But that is not to say that yours is not related to the drugs. I had over 30 side effects …effecting almost every body system and organ. I was just devastated, barely able to move for months….and almost ALL my tests came back negative. (No surprise since Dr Todd Plumb says most of the damage is functional not structural.) Still, I would not be surprised if your results were related.

      • TM March 5, 2018 at 12:17 pm Reply

        Hi, Thank you. This is emotional for me to hear back from others. I have been suffering alone for so long. Have you recovered? If you have how long did it take for you to recover? What on earth did you do to help yourself recover? My heart is my biggest concern now. I’m so sick, my blood pressure goes from hypotension to hypertension, my whole body shakes and throbs to my heartbeat, I’ve been living with pulsatile tinnitus (hearing my heart beat) since Sept 2016. I can’t write much now, but will share my story, hope to get advice. Looking forward to hearing more. Thank you so much.

        • L March 5, 2018 at 12:36 pm

          I have recovered about 90-some percent. And I was bad. I truly did not imagine I would survive. I still have fluid around my heart, but so far it doesn’t seem to affect me. I just have to have echo-cardios every 6 months or so to make sure the fluid has not increased. I still have vision issues—mostly just much worse vision. Floaters and light sensitivity are still there but considerably better, and have been told I have early stage macular degeneration now. I take a daily eye vitamin supplement. I still have tinnitus which can drive me crazy at times, when it gets loud. LIke cicadas. I don’t have the energy I had before, but I can do most of what I did pre Cipro. I get some side effects that recur like olfactory hallucinations (always a gross smell—never anything pleasant); strangling sensation around my neck and some breathing issues.

          I was fortunate in finding an ND that did nutrient IVs AND had already treated several floxies. I started feeling like I might actually live again after several months, and then like I might actually be somewhat normal again, after around 12-14 months. I am now 3 years out.

          Glad you found this site. It’s such a difficult thing to go through, and so much more so if you are alone. There is a lot of great information on here. Not sure who you have seen treatment wise, but I would say 90-some percent of us had not had good results or reactions with regular MDs. You are best finding a good ND or an integrative MD. IF/ when you do see someone, if they don’t believe your injuries are from the fluoroquinolone, leave the office. You don’t need to expend more energy trying to convince someone. On the other hand, if they seem more agreeable, you might want to show them these letters that Lisa has posted on the site, which are from doctors who were themselves floxed. https://floxiehope.com/tag/dear-doctor-letter/

        • Dee March 5, 2018 at 5:26 pm

          Tuula, I am almost 9 months into recovery and have improved with some of my symptoms. The one symptom I have that is very annoying is also pulsatile tinnitus! It came on about 3 months into my recovery believe it or not after taking a half mg of melatonin!! It triggered horrible tinnuitis! I have made some improvement since then but now I hear a constant pulsating and of course it is really bad when trying to go to sleep!! I see you have lived with your tinnutus for a long time?? When did it come on in your recovery and has it improved at all for you? Have you seen a Doc about it or found anything that helps it?? You are the first person who has mentioned this type of tinnutus! I have read it is more of a vascular issue in the ears??? Tell me more about your experience with it when you get a chance! Would appreciate!!

        • L March 5, 2018 at 5:35 pm

          So interesting to read this Dee. I got “regular” tinnitius post Cipro but something else I have been dealing with is crazy mast cell issues….constant post nasal drip, dropping into my lungs and effecting my breathing. Anyhow, I had read about a study where they gave people 3 mg of melatonin a night for 30 days for mast cell issues, and as it turns out, many of them had improvement with the tinnitus. Well, I was so excited to maybe kill two birds with one stone. Well, first night I took, I didn’t sleep at all. Second night, I awoke an hour later with night terrors. Just awful. Could not get out of bed and to the light switch fast enough. End of experiment!

        • Dee March 5, 2018 at 6:34 pm

          L. Well the melatonin actually triggered my tinnuitis so it is off my list forever!! Who would ever have thunk???? My one Doc said when GABA receptors are damaged they could react opposite to melatonin and have a hyper reaction!! That is an understatement for me and my tinnutus!! Thank you melatonin!! And of course Cipro for creating this mess in the first place!!

  11. Irene March 9, 2018 at 7:18 am Reply

    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.

    • Dee March 9, 2018 at 8:11 am Reply

      Irene, I am so sorry for what you are going through. I truly hope in time all of your symptoms will heal and improve and you will recover. Interesting enough after 3 in a half days of Cipro and experiencing some neuropathy I stopped taking the Cipro. Two days later my Doc wanted to give me another antibiotic to make sure my UTI was taken care of. I took the first 2 doses the first day and it was like my neuropathy lit up like a Bon fire!! It totally exasperated my already Cipro induced neuropathy and I immediately stopped the macrobid. How long did you take the macrobid? Did you ever take a fluroquinolone too?? My pulsate tinnutus was actually brought on by a half mg of melatonin 3 months later!! My tinnutus isn’t as loud as it was then but it is constant and of course very annoying. My neuropathy has almost gone away 9 months later. Have you considered seeing a functional Doc or NP to get some nutritional testing done to maybe guide you with taking vitamins and supplements?? Are you taking magnesium to help with the neuropathy and muscle pain? I pray you will begin to recover soon. I know it is difficult but try and keep the faith and believe your body can and will heal. Dee

    • Dee March 9, 2018 at 9:50 am Reply

      Irene, have you made any or some improvement in the last 1.5 years??? I really hope you have which would be at least moving forward for you???

    • L March 9, 2018 at 10:15 am Reply

      All those tests for me came back normal, except, no surprise the igE . I have had allergies all my life and so expected that. And again, most tests comes back normal because the FLQ reactions are primarily functional and not structural.

      I am so sorry you have been given such a run-around, but sadly not surprised. Same thing happens here in the states. Denial, refusal, disbelief, mockery.

      One of the first pieces on the damage from FLQs was from Canada! If you haven’t seen it, her it is https://www.youtube.com/watch?v=Scyd59nUG7s

  12. kevin April 23, 2018 at 11:31 am Reply

    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!

    • L April 23, 2018 at 4:36 pm Reply

      Hey Kevin, I too was on prednisone when I was floxed and I was severely damaged–breathing and vision issues, incredible pain, gut destruction and large fast weight loss, over 30 side effects. So glad you are doing better.

      A couple things I want to mention. One re the herniated discs. I have had 3 since my thirties—nothing in particular just an accumulation of damage from skiing, tennis, dancing, baseball—anyhow, I was lucky enough to end up with a surgeon who didn’t really believe surgery was the best option long term. He sent me to a physical therapist who used the Mackenzie Method on me. (I thought my back would snap in two the first time he guided me!) IT really is similar to the cobra position in yoga. Anyhow, that was decades ago, and STILL if I do it regularly I have NO ISSUES. (and at the time my back went out I couldn’t stand. I was literally having to crawl on the floor and an ambulance came and picked me up.) I have even done stupid things since then, like jumping off of stages, and not had a problem, as long as I keep up with that one exercise. You might try to find someone nearby who uses this method to see if you are a candidate. (There is also a book by Mackenzie called Treat Your Own Back—but it is much easier to do it with someone trained)

      The other I have mentioned on this site before. Post Cipro I ended up with torn meniscus. I didn’t want surgery. I was so disgusted with allopaths, and I have read the outcomes aren’t always that great, so I got prolozone injections (not to be confused with prolotherapy) from my ND. It help your body heal itself naturally. It takes a few months, but I am now 1 1/2 years out from these injections and my knees have been great. I wanted to mention this in case you do happen to rupture something. It works for not only meniscus but tendons, cartilage (my doctor used them on his receptionists father, in all his arthritic areas—hips, knees, back and he’s been doing great.) Some sports medicine doctors do this now as well.

    • Bronwen Duncan April 23, 2018 at 6:07 pm Reply

      Wow. What a survivor attitude! I’m glad you’ve found this site. Everyone experiences somewhat differing symptoms and it’s great when you can find the comments or story of someone who found some bit of help in a way that you haven’t already tried or researched yourself. I’m so glad you’re healing. You are taking magnesium of some kind? (Mag threonate is really good for brain/nerves/mitochondria).

      • Bronwen Duncan April 23, 2018 at 6:09 pm Reply

        PS. My reply above was directed at Kevin.

        Prolozone therapy sound interesting too, though, L!

  13. Sandra Joseph May 12, 2018 at 4:24 pm Reply

    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.

    • L May 12, 2018 at 7:10 pm Reply

      How on earth is it possible, with everything out there, that physicians are still saying “they’ve never heard of “ these reactions?! It is infuriating. It’s like they’re all living in some giant cocoon.

    • Bronwen Duncan May 16, 2018 at 7:37 am Reply

      Hi Sandra: I’m so glad you found this site. With all the variety of different stories and experiences, you’ll find advice and insight with your journey through this difficult journey. If you’re looking for a good overview on where to start on supplements, my post on March 3rd (above) may be a good overview. Wishing you light at the end of that tunnel, and healing!

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