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.

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

  1. Genevieve August 9, 2016 at 8:16 am Reply

    Hi Bronwen,

    Received collagen and am trying it out. It comes in such a pretty box, it’s hard not to feel a little happy just looking at it. One thing I wondered about you, and people here in general, is whether you have any amalgam fillings, since many of us do. I was taking R-Lipoic acid for a few weeks, and then discovered that it is not recommended for people who still have amalgam fillings as it can apparently bring mercury to the brain. Do you have any thoughts on that? I do have several big old-fashioned amalgam fillings, so I figured I’d give the R-Lipoic a rest for the time being and double up on Vitamin C. There seem to be varied opinions, but the general gist is always to discourage people from taking R Lipoic who still have the fillings.

  2. Bronwen August 9, 2016 at 5:40 pm Reply

    Hi Genevieve: The connection between R-Lipoic acid and amalgam fillings is not something I know about. I only took it for a little while, then moved onto other things. Sorry I can’t be of more help with this.

  3. Genevieve August 9, 2016 at 6:11 pm Reply

    Oh, you’re a big help in general with everything you’ve shared in your story! I came upon that little detail by accident today, and while it’s not conclusive, apparently, I thought it would be worth noting for anyone with old-fashioned fillings who might be taking it.
    Many thanks to you 🙂

    • Nicole Reedy August 9, 2016 at 7:55 pm Reply

      I have heard that but my Nathuropath has me on RLA and I have amalgam fillings. I will question her about it but I have been taking it for 6 months & do not know if I have mercury brain or not! (: I personally think we worry just a bit too much, know I have!!! Tired of it myself! I am just doing what I feel makes me feel better & the RLA helps with my burning for sure.

  4. Genevieve August 9, 2016 at 9:05 pm Reply

    Hi Nicole, I agree, I do whatever makes things better too, and I hope I didn’t cause you any undue worry. The worrying does get very tiresome, indeed. I’d be curious to know what your naturopath says about it, and I will ask mine as well next time I see her. One thing I read earlier in my researching is the opinion that it’s high dosage that can be troublesome, but that lower doses are safe, and most of what the naturopaths give are low doses. Meanwhile, I’m glad it helps with your burning, to be sure.

  5. Martin August 19, 2016 at 11:48 am Reply

    Hi Bronwen, it’s great to read your story and know that you’ve recovered well. I’m in the U.K. and wondered if you had any side effects from ALA? The reason I ask is that I have amalgam fillings and I’ve heard that it’s not recommended to supplement ALA if you have this type of filling – do you have amalgam fillings?

    Can you also point me in the direction of the Whey Powder you are using.

    Many thanks,

    Martin

    • Bronwen August 20, 2016 at 11:13 am Reply

      HI Martin. Nicole has answered the question about ALA much better than I can. Alpha Lipioc Acid was one of the supplements I stopped a while ago. Now 2 1/2 years after taking cipro I only take half of the list of supplements I originally did above because I was getting better (up and down), unsure some of them would be great on very long term basis, and it also reduced the substantial cost each month. Some of the supplements I plan to continue indefinitely and one of those is the whey you asked about, which interestingly also has a bit of ALA in it. I chose Progressive Harmonized Protein from a Canadian company as it is made from New Zealand cows (who, in that country, are not fed antibiotics or growth hormones) plus if you look in the fine print it has a number of small amounts of extra helpful things for the body such as Lactoferrin, Colostrum, ALA, flax seed, downy birch, dulse, spirulina, kelp, better gourd, papaya, pineapple. I expect a number of these help digestion. It seemed like unlike many of the whey companies designed to make money on pumping up young men’s muscles, this company was more interested in supplying whey from a health perspective. I expect you could do a google search for New Zealand whey from the UK to find companies that offer something similar in the UK.

  6. Nicole Reedy August 19, 2016 at 1:58 pm Reply

    Martin this is Nicole & I would like to say we have been going around & around about this since it was posted by someone.

    I have amalgam fillings as I am 65 years old. I was taking ALA which seemed to control how bad my burning was. After everyone getting on this band wagon I stopped my ALA. I then had the worse relapse I have ever had. ( I am just a little over 6 months out ) Not only did my burning come back big time but my tendons were worse again and I had terrible joint pain that was worse than I ever had!!!

    I talked this over with my NP and my integrated chemist. My chemist said it is a theory but not proven as most theories, so what was important my burning or a theory? My NP said it is a chelator that can remove mercury from the brain. Too much maybe could cause a problem but we do not take it in those high does. She also said removing the filling at this point would be damaging for a Floxie as that is when the mercury would really release. I would need to wait a few years if I wanted them out.

    She also said if it was that strong of a chelator it would be used more than it is. You also need to be taking Cysteine (NAC) and the master Glutathione.

    Even though I have fallen into the guestions of some comments that have been on here I will never do it again!!!!

    There are too many people that these supplements you see on Bronwen’s page have helped!

    Everyone has to do what is best for them but I just learned my lesson the hard way.

    Hope this helps!

    Whey Power, high quality organic.

    Like Bronwen I am also in Canada.

    Good luck,

    Nicole

  7. Susan August 24, 2016 at 10:45 am Reply

    Hi Bronwen, I really would love to talk with you one on one and get some guidance. I am tired of reading stories online and would love to have a conversation with someone who has walked this walk. I need help I too Cipro 3 years a go have bizarre symptoms, Brain fog, severe fatigue, bad costrochantritis and horrible periphathy neuropathy (I can not have clothing touch me it hurts to wear clothes) on my arms and upper chest, Plus I have jaw throat pain severe. May I please contact you and if so how could I ? Many thanks, Desparate to talk.

    • Bronwen August 30, 2016 at 12:59 pm Reply

      Hi Susan: Sorry about the delay in responding. I’ve been away from internet on a holiday. I am reluctant to leave my contact number or email publically. However, I think I thought of a way – if you search Bronwen Duncan on Facebook and choose the Bronwen that lists Yukon College and then message me privately – not on the feed, that would connect us out of the public eye.

      • Susan September 5, 2016 at 3:29 pm Reply

        Hi thank you so much for responding I to do not want to post phone number or email online however really need some guidance. I do not have a Facebook wondering how we can connect I have so many questions

        • Bronwen September 5, 2016 at 6:05 pm

          Hi Susan: It is not a good idea for either of us to put private contact info publicly. Facebook is the only option that I can offer. However, you are welcome to ask me questions in this comment section. The bonus is that you also share you also share your questions with others who may have experiences and knowledge beyond mine.

        • Susan September 5, 2016 at 9:18 pm

          My story is to long and complicated to type I took cipro three years ago for they thought diverticulitis three weeks later I had costrochandrtis if went away then I had my gallbladder removed cause they thought that is what my pain was on my left ab and ribs I am jaded with doctors after the surgery worse my costrochandrtis has been everyday since December 2013 after research they found it was h pylori that was left an pain but something happened in December 2014 within one day my elbows and arms started hurting pain peripheral neuropathy fatigue brain fog set in I have been sick ever since I can not seem to get better how can cipro do this much damage one year and two months later? I recently have been told I have Lyme so I am confused I have been patient and want to heal but do not know how. Are you better? I feel so alone want it over so o don’t know if it cipro or Lyme or both I don’t know how to tell people to heal cause I don’t know how to this is a nightmare everyday I wake up to push my body to continue tired of being sick. I want my health and do not know where to start? What do I do?

        • Madge hirsch September 15, 2016 at 2:30 pm

          Hello Susan- I too suffer very badly from costochondritis after Cipro. I was floxed in 1999 utilisation did not know it at the time . I suffered from the rib pain on and off for many years but after being refloxed 2 years ago it is more or less permanent. The worst part of it is when the sternum hurts as I worry it’s my heart especially as after Cipro I also had some heart rhythm irregularities . I hope that gradually it will get enter and I will have periods free from it as before.

        • Bronwen September 23, 2016 at 8:13 pm

          Hi Madge: I know what you mean about the sternum hurting with costochondritis-like symptoms and it is so confusing as it feels like the heart. This last spring I started (gradually) taking way more magnesium and also collagen (from the scales of wild fish) as I figured my connective tissue needed boosting. My costochondritis has improved a whole bunch so wanted to let you know in case it can help you too.

  8. GregRx August 31, 2016 at 12:59 pm Reply

    Very similar to the problems I have from statins. It is a real problem when you are a pharmacist who has lost all faith in pharmaceuticals. Today my Father is in the hospital with heart failure after a urinary infection 2 weeks ago. You can guess how I found your site.

    • Bronwen August 31, 2016 at 5:57 pm Reply

      Ugh. So sorry about your father. These reactions sure seem to have a genetic component. It wasn’t until I reacted that we realized the collection of strange symptoms my father had at the end of his life – including heart failure – were mostly from a cipro reaction. I would highly recommend looking at http://www.drsinatra.com/best-heart-health-nutrients-to-consider/ for your father. When I started D-ribose I could feel my heart respond within minutes. MitoQ is a much more focused CoQ10.

      I also hope you find your path to healing. It can be a slow process and must feel strange if you’ve always thought pharmaceuticals. I’m seeing online and in life quite a few pharmacists who move on to focus on supplements – like Suzy Cohen. I think we have to figure out what our bodies are missing either by genetics or by chemistry we’ve ingested, and then supply what is missing to give it the best chance to heal. There’s room for medicine for sure, but the first thing is to get the body primed to do its own job. I’m pretty sure magnesium is one of the most important components – at least it is for me.

      Wishing you strength.

  9. Nicole Reedy August 31, 2016 at 5:13 pm Reply

    So hated seeing your post Greg! I understand everything you are feeling and saying.
    I had started a new statin ( the last 1 had caused me terrible problems ) when the 1st Cipro sent me into hepatitis & was still given 10 more days of Avelox without a working liver. It has been 7 months since that fateful day & my life I am afraid will never be the same. At first I thought okay my liver will heal. Then 5 weeks later tendon problem started with at least one rupture. Did not end there & I got into a NP right away and have done everything money can buy to stop this. Yet have had burning neuropathy, hives, joint cracking, bone & joint pain & dry wrinkled skin. My only dr I have seen that said I have never given this line of antibiotic & never will was my cardiologist!!!
    My heart is with your father & you. I am nearing 66 and this is the worst nightmare I could imagine!
    Nicole

    • Bronwen August 31, 2016 at 6:05 pm Reply

      Nicole: Don’t stop believing you body has the capacity to heal. You’re doing all the research and trying to provide it with every opportunity you can which is awesome and will pay off over time. It is very hard when the symptoms cycle up and down, but gradually, very gradually, you’ll find a turn around and improve, just a little and then a little more – maybe not completely but so you can feel happier. Yes – it is harder when you’re older – I’m in my 50s and realize if this happened in my 30s I’d have bounced back faster. But believe there will be more peace and more improvement ahead.

  10. Nicole Reedy September 1, 2016 at 11:27 am Reply

    Thank you, Bronwen!
    It gets hard sometimes as the relapses seem worse than before with new symptoms.
    I am just a old lady gettig tired I guess.
    I will keep on trucking & must admit I have never met so many kind, helpful & wonderful people as I have through FQ toxicity.
    Not a great way to find great friends but so grateful for you guys!
    Hugs,
    Nicole

  11. n1n34n September 4, 2016 at 9:48 am Reply

    For the past while I have been having a lot of scary heart discomfort and I’m not sure about the trigger, but I learned something recently that I wanted to share here for anyone with heart issues: Most dental numbing agents contain epinephrine, which is adrenaline. I never knew that, and anyone with a jumpy heart should probably avoid it, in my opinion. Last December I had a root canal (before I knew that Cipro was the cause of all my woes) and I thought it strange that I was not numbing up the way I always had before. The dentist gave me many shots before I was numb enough to do the work. That night I woke very dramatically, feeling as if I was having heart attack. Looking back, it was as if all that adrenaline in the shots he had given me that hadn’t worked to get me numb was released all at once into my bloodstream. My heart calmed down after about 30 minutes, but what followed was three-plus months of unrelenting dizziness. I avoided the dentist after that. (I only discovered the FQ culprit behind everything after being re-poisoned in May with Avelox and googling, etc) Recently I went for a cleaning because it had been a year since the last one, and I have decay under an old crown on a live tooth. Because I’m so close to my re-poisoning I don’t want to risk any anesthesia or drug or chemical at all, not even Carbocaine, which contains no epinephrine. Most dentists (such as the one I saw) don’t want to drill on a patient without anesthesia, but last week I had a consultation with a holistic dentist here in NYC who is willing. I never thought in my wildest dreams that being told I could have tooth drilling without anesthesia would thrill me, but it did. The dentist was very interested in my flox story and I gave her the FDA warnings that Lisa Bloomquist provided. Like most medical practitioners I’ve seen so far, she knew nothing about the dangers of FQs, but at least she was properly appalled. I’m particularly glad she agreed to this since my heart is doing so many crazy things lately, along with little flash fevers and other new symptoms. This coming week I’m seeing the GP who doubted me completely when I told her in June what I had, in hopes that I can convince her (and the insurance) to allow me a full thyroid panel and other blood tests so I can try to figure out for myself what might be going on. But the happiest thing right now is this: I asked the new holistic dentist if I can bring my kitty with me to the appointment for moral support if it’s very painful. I was kidding, but she said I absolutely can! So I’m going to. My kitty is a shoulder-rider who isn’t getting any outings lately because of my floxing, but she’s coming with me to the dentist and knowing that I can have her with me is a tremendous comfort, along with the facts of the dentist not doubting me and being kind. And even with the panicky feelings around some of the new symptoms that just keep coming, it’s a thousand times better than when I didn’t know what was wrong with me last year while the docs sent me for endless expensive tests that turned up the usual ‘nothing’ that so many of us know too well. What this gave me was a reminder that I should always ask for anything I want from medical people, because sometimes asking yields a surprisingly happy response. 🙂

  12. n1n34n September 4, 2016 at 10:01 am Reply

    Not sure why the number code and not my name came up with my above post, but this is Genevieve posting about the dentist and the epinephrine.

  13. Bronwen September 4, 2016 at 11:25 am Reply

    So glad you’ve found a receptive practitioner. It is hard to understand all the potential chemical reactions that other drugs might generate in a body which is off balance from reacting to a fluoroquinolone, and it also depends on how the reaction manifested itself in your organs. Many people don’t have heart issues, although you and I have. I remember taking what I thought we be harmless melatonin to sleep better one night and it really made me worse for a few days. That was early on. I don’t know if it would now – 2.5 years later – as I expect I was putting extra chemicals through a struggling liver, which is healthier now. My heart is much improved too. I had a tiny bit of local anesthetic recently (which one I don’t know) and did not seem to react. However, I try to avoid medications, using Turmeric as an anti-inflammatory and medicinal-grade (UMF 10+) manuka honey as a topical antibiotic. Good luck with your dental work!

  14. Genevieve September 4, 2016 at 11:57 am Reply

    Hi Bronwen, I’ve had some liver troubles too, which I’m hoping to address. NAC seemed to affect me badly, and my acupuncture/Chinese herbal medicine doc had hoped that would help me. Thank you for the tips, especially manuka honey. Was there anything in particular you found to help your liver?

  15. Bronwen September 4, 2016 at 12:37 pm Reply

    Yes – liposomal glutathione helped my liver and symptoms immensely. Glutatione is what our liver uses to detox. I expect there are other things too, but this seems to be the most important one. NAC is an amino acid which is a pre-curser to the body making its own glutathione, and Whey powder is also, but when I took NAC, my methylation cycle and liver were so compromised it made no difference and I moved to liposomal glutathione. I looked back over our other conversations as I knew I’d written about this in more detail before, and notice you said you tried it but stopped because of herxing (see our conversations around July 3). I decided to persevere through this, and managed by starting the dose small, feeling awful as toxins started leaving my body but a few weeks later, moving to a much better place. I also think our bodies are better able to handle certain types of help once they’ve worked through some improvement already. I don’t know whether it is worth retrying for you, or whether it is better to do some further research about alternatives outside of my experience.

  16. Genevieve September 4, 2016 at 1:47 pm Reply

    Thank you for that. I’ve been hoping to be able to be tested for the MTHFR gene mutation, as the Chinese doc thought that may be why it was causing me trouble, and I was afraid of the way the herxing felt, which was too awful. I am very tempted to try the liposomal glutathione, and fingers crossed getting for the blood tests I want of liver, kidneys etc, and I just might go for it. Did you ever find out your status for MTHFR? There are labs online, but for some crazy reason they are illegal for use in the State of NY.

    • Bronwen September 5, 2016 at 9:43 am Reply

      Hi Genevieve: I certainly been curious about MTHFR and also the genetic inability to use magnesium well (TRPM6) as previous to cipro other body tendencies might point that way. But I am totally out of my depth here.

      I’ve been taking methylated folate and the other B vitamins to manage the MTHFR if indeed it is an issue. I’m in Canada and asked my doctor for genetic counseling. Having moved from BC to the Yukon, the appointment became delayed, but now, a year and a half later, I’m flying to Vancouver this Thursday for the appointment! I’ll post anything useful I find out.

      • Genevieve September 5, 2016 at 10:12 am Reply

        Thank you, Bronwen. Good luck in Vancouver, I’ll be curious to know what you discover.

    • Genevieve September 5, 2016 at 10:15 am Reply

      Thank you, Bronwen. Good luck in Vancouver, I’ll be curious to know what you discover.

  17. Nicole Reedy September 4, 2016 at 3:57 pm Reply

    Genevieve, I did have a bad liver attack & it has been a problem. Of course I do get the glut. in my IV & take NAC.
    I just has a setback 3 weeks ago that has been worse than ever & my heart is acting up a bit which I am really surprised it took so long as I already had a heart rhythm problem. But my body reaction this time, tendons & burning was the worst but turning around a bit again. These things are scary as we try to clear our bodies but what choice do we have?! I have had adverse reactions to a lot of things since 1st Floxing I got 9 years ago because I did not know I was floxed I just added more poison! Statins etc.!
    Now with your liver if you are scared of the glut. you can use milk thistle & your chinese Dr will know of other herbs to try as well.
    I was ready to hang up the towel a few days ago but we just have to hang in there!
    Wishing you good luck with your treatment.
    Nicole

    • Bronwen September 5, 2016 at 9:57 am Reply

      Nicole – Ugh. Sorry about your relapse. Sos frustrating! I admire your resiliency.

      Just a note on Canadian (and American) animal protein sources as a potential source of relapse. Did you know that poultry raised here is not allowed to be fed fluoroquinolones, but pigs/cows/lamb are if they are sick? They need to wait at least two weeks until after the last dose, but I have avoided all sources of red meat that are not antibiotic free as I’m sure the drug would still exist in the animal’s cells and NEVER eat shellfish that is not been caught off our shores. This is because much of the imported seafood (e.g. shrimp) is grown in Asia in ponds filled with antibiotics. And the only local fish I’ll eat is wild, as I’m not sure of the antibiotics in the farmed fish.

  18. Genevieve September 5, 2016 at 7:18 am Reply

    Thank you, Nicole. And I hope you recover from your recent setback very soon.

  19. Nicole Reedy September 5, 2016 at 1:19 pm Reply

    Thanks Bronwen!
    It is good to know I can order chicken out without worry! I have had nothing but antibiotic free food since this happened. I have only been out to eat 3 times in 7 months for fear of food. I was the only person it seems that was happy when Earls decided to serve only antibiotic free meat! I also only eat fresh ocean fish & do not have shellfish. I do not know about Canada but I do know framed fish are antibotic to death & they do use FQ’s in the States. It is nice to know when I do not have a choice I can order Chicken out!!!!
    That is just the hard thing for me as I have done everything right. You got me right to a NP & I have stuck to it to the tune of $7,000 at this point between supplements, IV’s & accupuncture. We do not have flouride in our water & if I buy a bottle of water I always look at the flouride count.
    The first setback I had we had the glut. up really high so backed it down. This one which is worse that I ever was before is really a mystery. I was stressed over a another health problems that has to be addressed & my burning had got livable & my feet were not bad so I was probably doing too much as I would keep on going after knowing I was tired!
    Anyway getting a bit better again, just baby steps. My doc wants me to get a handicap card for the car so I am not walking so much & I am finding that very depressing! 😃😀😄
    Hope you have a safe trip down here. I would love to see you but I am sure you will head over to see your daughter.
    Thanks again, you have been a great friend in FQ world!
    Nicole

  20. Susan September 6, 2016 at 9:27 am Reply

    What was the way I could contact you on Facebook again? It is not displaying on here any longer

    • Bronwen September 6, 2016 at 10:04 pm Reply

      Hi Susan:

      I’m responding to the message you posted last night which disappeared – some technical glitch.

      I’m really sorry you’re suffering. I know how scary it can be. Everyone reacts differently, and yes, I have improved over 2.5 years to 75 to 95% depending on the week. There are definitely some similarities and cross diagnoses with Lyme disease, and some people say fluoroquinolones bring out the latent Lyme disease. I know a number of the symptoms are the same but I know very little about Lyme disease. However, I’ve read that for both the mitochondria are compromised and so are your body’s abilities to remove toxins. Improvement is slow and gradual. Your body is limping is likely to be limping along without enough of some pieces of chemistry it needs to accomplish both tasks. It takes a while for it to return to better processes and as it does, toxins can be released, so the whole process is inevitably gradual and up and down as things sort out. Believe you have the capacity to heal and be patient. I will suggest what I feel are the most important supplements but please remember I am no doctor, and I only speak from my own experience and my non-professional research. Taking any supplement is a decision you need to feel OK about, and do your own research on.

      So now to bits of chemistry your body might benefit from. (They all cost money which is not fair, but I don’t know any way around it): B complex that includes all the B vitamins but must have the folate (B9) in a methylated form and B12 in a methylated form too. This is a good one: https://www.thorne.com/products/dp/b-complex-12 and https://www.amazon.com/Genestra-Brands-Complete-Supplement-Vegetable/dp/B009AWOLG8 B vitamins are good for nerves.

      Magnesium – Magnesium malate or Magnesium bisglycinate – both can give you the runs if you take too much too fast, but I would ALSO take Epsom salt baths – which bypasses you digestion to get magnesium in your body. Magnesium oil also does this and is a great way to boost the magnesium Cipro strips from you. You will find over time, if your body will accept the magnesium more readily.

      I would also recommend an additional type of magnesium as this one goes directly to the mitochondria and brain – Magnesium Threonate. Look it up on amazon. This can make a big difference to brain fog.

      To boost your mitochondria, I would suggest MitoQ from New Zealand. As the name hints, it is CoQ10 which targets the mitochondria. IT IS expensive, but much more effective than CoQ10. I’d also take acetyl-L-carnitine – good for nerves and brain.

      And now the costochondritis – I certainly suffered from something that seemed like this and still occasionally have some of this pain although I’ve never been positive what it is, but found that it improved a whole bunch when I took Collagen. The type I take is made from fish scales (wild fish – no antibiotics) and is called TrueMarine Collagen.

      So, these are the most important supplements to boost your mitochondria and connective tissue, but now you need to be able to get rid of all the by-products jamming up your system causing oxidative stress. You liver needs to boost its glutathione production – the main oxidative king. This can be done by eating whey protein, or by taking NAC (N-acetyl-cysteine), but neither worked when I was at my worst and I had to resort to liposomal glutathione. If you just eat glutathione, the body digests it as food, but liposomal glutathione wraps the glutathione in little fat coating, so the body takes it off to store in the liver, where it is needed. But this can be very stressful on some bodies as when the body starts to detox, the “garbage” is loose and running about, causing more of the very same reactions it had as the toxins arrived. This is called a Herx reaction. People also have glutathione via IV, some with much success and for others it is too much. With what you’ve described as your symptoms, I would suggest it would be very beneficial to manage glutathione or other detox options under the watch of some healthcare provider – probably alternative – such as a naturopath, perhaps Chinese medicine, or a Functional practitioner. They might suggest other options too, like Nicole on this page who mentioned Milk Thistle from her Chinese medicine practitioner. Otherwise, you need to take it slowly.

      In your (deleted) message you sound very frustrated, but remember that you’re taking steps. You’re reaching out, like you did on this page, and this is an important part of the path forward, but it would be awesome if you could find some useful connection in person as well. I know it might not be possible, but I’d encourage you to perhaps interview some other potential health providers. Ask them if they have worked with Lyme Disease, or if they have worked with detoxing with things like glutathione or what approach they’d have. I find that some practitioners you just have an intuitive reaction to trust and others just don’t click. I think you need an advocate close to home. Myself and others on this site offer recommendations based on our own experiences or our own research, trying to own our own path through this maze of healing. I’m not doctor, and I can’t say with any authority that what I suggest will work for you. We all react differently and find different paths to healing – I know reading all the stories on this site can be overwhelming, but bit by bit you’ll sort through what makes sense to you.

      Other more “normal” vitamins which are great are: Omega 3, Vitamin D, Vitamin C, Vitamin E.

      Gosh – well, I hope this has helped. Wishing you healing.

  21. Genevieve September 7, 2016 at 8:21 am Reply

    Nicole, I’m wondering how far out you are this time around, I think you’ve mentioned it but I have forgotten. Going for blood tests today, which my GP (who doesn’t believe any of this is possible despite my giving her the new FDA reports) reluctantly gave me a prescription for. I will have to pay for it all myself, but I feel it’s worth it. Then I can at least take the reports to the Chinese herbal doc. They are not allowed to order blood tests, unfortunately. My heart has been acting up a lot too, and it’s very hard to keep weight on, in addition to many other tiresome and scary things. I’m fast becoming an amateur biochemistry enthusiast whether I like it or not. 🙂

    • Nicole Reedy September 7, 2016 at 12:12 pm Reply

      Genevieve, I am 7 months out today & just returned from my NP, had IV with vits, mag. & glut. I have been doing this for 6 months now. I have been better twice but then had 2 relapses. Both times I was worse that before but it seems to start turning around again in about a month. This one has been hard & just now feeling a bit better.
      My GP I had when this happened believed you could have a reaction but said it would be just like if I worked out to much & would not get any worse pain wise. He knew nothing about the heart problems & blamed my liver on other things. Needless to say I have a new GP who is aware of all the problems the FQ’s cause but knows except for tests he can not offer me much of anything.
      Get your bloodwork done but if things like your mag. are in normal range it does not mean you do not need it.
      I had my ferritin checked thinking it would be low but was high. My cardioligist said it was because my liver throw out my iron along with everything else into my bloodstream.
      Then get yourself a new GP who will listen to you. That at least makes a difference. Pharma has some drs so brainwashed & of course they do not want to believe they can do something so life changing to you!
      Let me hear about your bloodwork.
      Nicole

  22. Genevieve September 7, 2016 at 1:24 pm Reply

    Yes, I do want a new GP and she’s dropping my insurance at the end of the year so I’ll have to get one anyway. The healthcare system is a mess right now, though. It’s getting harder and harder. Yes, I will keep on the mag no matter what, thank you for the reminder. I’m sorry for your setbacks, it can be so draining and debilitating, this thing. I force myself to keep studying, as I’m sure you do too. The more I learn the less I feel I know, but I know much more than I did the first time I was floxxed without knowing it, so that’s a good thing at least. It’s very sad the way the doctors are now, I find. That they won’t believe something even if the proof is written before them, nor do they seem to even want to know. There is no diagnostic curiosity at play, or so it seems from my experience. At least the GP I have for now is willing to let me have the blood tests, even though she wrote the script while shaking her head and saying she thought they were a waste of time and that I’ll have to pay for them myself. The neurologist I saw last Spring when they still thought I might have a brain tumor hung up on me in June when I called to ask her if she’d write me a script for a blood test after telling me there was no need “based on her notes.” I wanted to tell her I knew what the culprit was, because I’d been refloxed, and I thought she might be curious to know what it was that ailed me, but she wasn’t. So I feel lucky that ‘ll be able to get the tests, at least. Have you been tested for the MTHFR gene mutation, by chance?

  23. Nicole Reedy September 7, 2016 at 7:33 pm Reply

    It sure makes you think twice about seeing a doctor about anything anymore!!!
    I have not had the MTHER gene test but my dr. does believes the gene has a lot to do with our reactions & that it is hereditary & told me to tell my son not to take a FQ.
    He went into a walk in clinic 2 weeks ago for a sinus infection & she gave him cipro. He told her what had happened to me & he would not take it. She said she had never heard of such a thing but handed him another scrip & he had taken to pills before he realized it was still a FQ. The dumb dr gave him levaquin!!!!
    They really do not know about FQ’s in Canada as we have NO warnings for them!!! He got right into my NP and got a mag. & glut. IV and I just pray he stays okay as he has a demanding job and two small children. I have never been so mad!!!
    I am thinking about doing the 23andme blood test. My NP said she can get into the results & really figure things out that I would not understand. Just so tired of spending money!

    • Genevieve September 7, 2016 at 8:16 pm Reply

      Sadly I have no faith in doctors now, even the “good” ones. I am so sorry about your son. I do think with the fortification he’s given himself he’ll probably be fine, but I am very sorry for you that you have that extra worry. I do think that the gene test is a good one, and my GP also thinks it is worthless, but she gave me the script anyway since I must pay for it myself. I would encourage every floxxed person to have the test. Are you on FB, by any chance, and if so, may I friend you?

  24. Nicole Reedy September 8, 2016 at 5:46 am Reply

    That is so true & I am afraid this condition makes you afraid of so many things that a Dr. does not understand!
    My Doc is great & is well aware of the damage FQ’s causes but he still does not understand when I tell him I can not take NASIDS or a steroid for the pain but he sits with a laptop & does look everything up at least. He is still is having me take another CPR test next week when the 1st one months ago I did not show inflammatory markers. He does not understand the getting worse parts of this very well, He has ordered me a handicap sticker so must not have a lot of hope for me! 😄😃😀
    I am on Facebook under Nicole Reedy in West Vancouver BC Canada

  25. Genevieve September 8, 2016 at 5:50 am Reply

    Those handicap stickers can have their advantages. 🙂 I will friend you.

  26. Genevieve September 23, 2016 at 3:12 pm Reply

    Hello Bronwen, I finally had my MTHFR test done and I have two copies of the C667T gene mutation. Not surprised, actually. Did you manage to get your test as well? The more I read about it the more my head spins, but I’m going to learn all that I can.

  27. Genevieve September 23, 2016 at 3:13 pm Reply

    Also, do you still take the liposomal glutathione, and is there a brand you would recommend?

    • Bronwen September 23, 2016 at 8:09 pm Reply

      Hi Genevieve: No I’ve not been tested for MTHFR. I was wondering if this might be part of my recent visit to genetic counseling in Vancouver, but it was not to be. I was told the study of pharmaceuticals and genetics is in its infancy, even if growing exponentially, so they only viewed my genetic tendencies from a traditional point of view. I am also part of a huge UBC study on exactly this, but results will be years away. Meanwhile, they identified that I likely have Ehlers Danlos type 3, which from all I can gather, is a catch bucket for all those people who seem to have connective tissue compromise, without it being dangerous. This would explain the costochondritis and fibromyalgia-like symptoms, but it is something that cipro did that brought these on. Maybe poor connective tissue means that when magnesium is pulled out of the body, the mitochondria and cells are more susceptible to damage? Who knows? I already knew I had poor connective tissue so this was no surprise. I am interested in the MTHFR, but not sure I’ll pay for this testing as I’m already providing myself with the cure – methylated folate. I’m actually also interested in genetic issues with magnesium – there is a gene called TRPM6 but I’m not sure I’ll ever get that tested. However, I’m following through on getting tested for hyperparathyroidism (see https://floxiehope.com/2016/04/04/hyperparathyroidism/).

      It is all a bit of a crazy puzzle. I think there are different risk factors, not just one. MTHFR is undoubtedly one of those factors. All we can do is try to provide our bodies with building blocks it may be short of genetically, or by drugs “mugging” bits of essential chemistry.

      As far as liposomal glutathione – no, I no longer use it as it completed its purpose – to boost my liver so it could detox my body more effectively. Eventually I went onto NAC instead and now just whey powder (which helps boost glutathione production). I only took liposomal glutathione for about 8 months – much discussion much higher up on the comments (previous page of comments). There was a compounding alternative pharmacist in the little town I was living in at the time, and he made bottles of it. However, I expect you can find many good sources online.

  28. Genevieve September 23, 2016 at 10:11 pm Reply

    Thank you, Bronwen. I’ve been seeing a lot of reference to Ehlers Danlos and wondered about it. I seem to get new symptoms every day, all over. I’m in my fourth month since being re-poisoned and feel incredibly frail and compromised while trying to pretend to be okay as best I can. I’m going to see an orthopedic doctor on Monday to just hopefully get some advice on how to not make my knee worse, as it feels as though it’s coming apart, and my heart races and my skin is thin and it’s all so frightening at times. I thank you for the collagen tip, I take it every day and I don’t want to jinx anything, but I think my eyes have felt more normal since being on it a while. Now that I know I have two copies of the MTHFR mutation I’m trying to figure out a good dosage of methylfolate and methyl B-12, which I’ve been taking in small doses anyway. May I ask what dosage you take of those?

    • Bronwen September 24, 2016 at 10:21 am Reply

      Hi Genevieve: Initially I took the Thorne Research company versions as I knew they were highly regarded by naturopaths. 2g (2000mcg) methylated folate and 2g Methylcobalamin (B12) each day. Thorne has a variety of options, some of them bigger doses (e.g. 5g) and with other things to support methylation as well.

      Eventually I moved onto a Canadian supplement company I have come to trust called AOR. I’m not sure if these are available in the US or not. I take their Advanced B Complex which has both methylated folate and B12 in it. The serving size per day is 3 capsules, but I just take 2 and still get the same amount of both as I did with Thorne. I will continue to take this supplement always, I think.

      I do hope liposomal glutathione helps you. It made the turn around for me at the 4 months mark.

  29. Susan October 6, 2016 at 9:15 am Reply

    So really need some clarification. I do not understand. I took Cipro 10/2013 3 years ago. For 2013 and through November 2014 I had ONLY the costrochranditis as the only symptom (that started three weeks after Ciprco). Then in December 2014 I had to take Ceftin for infection within two days of this my arms starting hurting so bad and my throat muscles its as a bomb went off. (I do not know if this was herxing) (All of this by the way is on the right side of my body). I now have peripheal neuropathy. When I wear clothes on my arms and mid chest area hurt so muc.. The clothing makes me burn really bad just burn burn and I can feel it my tendons and muscles are weal.. Has anyone had this? I know this is a sign of Lyme. I do not understand how Cipro that I took took 1 year and 2 months prior could cause more break down after that amount of time since last use.. Or is it my Lyme? Is i possible that Cipro can bring up more symptoms 1 year and 2 months later since last use? I need to hear others experiences if this is a possiblilty. My lyme doctor says that Cipro damage is rare. I do not believe her. I do not remember what it is like to wear a cute sweater without pain. Has anyone experienced this? I do not remember what is is like to swallow food without pain. Has anyone had this? I am apprehensive to go forth with the lyme treatment because of the possible damage that has been done from Cipro. I JUST want healing. So let me step back for one minute. In 2015 I could barely get of my couch I literally thought I was dying. I am amazed I am alive today. Most days I thought my body was going to collapse and I was going to die. I am taking a supplement drink (which I would like to share with you all, that I can help you order) this drink has removed almost all of my brain fog and has really helped my fatigue. However the pain of the peripheal neuropathy still exist and well as the costrochranditis. So am reaching out to see if you all have the same symptoms. I know my fit with lyme and Cipro damage maybe I just have both. Maybe my body was compromised from the lyme and then Cipro caused herxing or it caused damage. Just don’t know any more. I have literally have been to so many doctors even naturopaths to no help. I do not know where to turn.

  30. Susan October 6, 2016 at 9:22 am Reply

    By the way one other question has anyone tried a steroid shot in their ribs for the costrodonchantris. Did it work?

    • Bronwen October 7, 2016 at 7:28 am Reply

      Hi Susan – first of all I do hope that you saw the longish note I posted to you on Sept 6. Messages were disappearing and reappearing for a few days then.

      Lisa created a post about Lyme disease and fluoroquinilones which I’ve found at: https://floxiehope.com/2014/09/19/lyme-disease-antibiotics/. I don’t know much about lyme disease personally, but know there is confusion in many about what is lyme and what is a fluoroquinilone reaction. It seems there are a family of symptoms that can be common to a number of diseases which also include fibromyalgia, chronic fatigue. I also was told that poor connective tissue (in the form of something like Ehlers Danlos type 3) can be a factor. Perhaps the connective tissue issue is common to all these things, who knows? There seem to be few definitive answers, but certainly more hints as people share their stories. But every body is different, with different tendencies so sorting it out means we all have to be a detective in our own journey. In the end that is where I turned to figure out my approach to healing and list of supplements – to myself, with occasional check-ins with a variety of alternative practitioners as none of them seemed to have all answers. This meant reading stories and studies online for dozens of evenings. It is good you’ve found this site and are doing the same. Some of it is just time – the body tries to heal always, and it can’t fix everything at once.

      I would definitely NOT take a steroid as they are one the drugs that increase tendon damage, and I’ve read a number of stories about how steroids made floxies worse. Here is a another page that Lisa wrote: https://floxiehope.com/2015/08/11/pharmaceuticals-contraindicated-with-fqs/ (Thank you Lisa for all these great resources!)

      As far as what helped my costochondritis symptoms – collagen (I take TruMarine Collagen) and magnesium. If you have peripheral neuropathy I would suggest the magnesium threonate as it helps nerves and brain and I personally like the magnesium malate too, as it is supposed to help muscles. I can actually feel it relax my fibromyalgia-like tight muscles an hour or two after I take the mag malate.

      Wish I could have a decisive answer, but hopefully this will help a little!

      Bronwen

  31. Nicole Reedy October 6, 2016 at 7:04 pm Reply

    Susan are you sure you have Lyme? I have all the symptoms you do from the FQ’s. My burning did not start until around month 4 or 5 but has been the most painful in a lot of ways.
    I also have pain from clothing and sweaters really bother me as well.
    I am just not sure about your time limit of this hitting you even though you did take Ceftin right before the new symptoms it is not a FQ and this this one usually does not cause a problem but with this crazy toxicity who knows.
    I have found with most people this burning does clear but I have been having it for 4 months now with good & bad days but it is always there.
    I have also been under a NP’s care for 8 months and she keeps pushing me to get a test for Lyme but I know it is the FQ’s.
    I have not seen the burning, tendon, & rib pain as side affects of Lyme but I could be wrong.
    I get a bit better then fall back with new symptoms all the time. This is just the most horrible thing I have endured.
    I have had every supplement on earth & weekly IV’s but I can not say I am really any better than I was 8 months ago. Just different maybe.
    I have a friend that is having a lot of success with ozone treatments which I know they use for Lyme as well. That will be my next step I believe.
    I hope someone can help you more that I can.
    Nicole

  32. Susan October 7, 2016 at 4:36 pm Reply

    Hi Nicole,

    Thanks for responding, It is nice to reach out to others that can share in this nightmare. I was tested by Igenex for lyme and it was positive for two bands. Not CDC standard but positive. I have had this burning for two years now. Yes these symptoms are simiilar to Lyme check this out http://www.rd.com/health/conditions/lyme-disease-symptoms/. I have 15 out of 18. It is our mitchondria I am missing something to restore my body and can not figure this out. Best wishes to you. I feel that Ciprco is the camel that did damage just do not how to heal.

  33. Nicole Reedy October 12, 2016 at 8:55 am Reply

    Hello Bronwen,

    I hope you had a great visit on the Island.

    I would like your opinion on getting a flu shot after being floxed. My NP says no & that I should get the immunity shots she gives. My integrative chemist said I can get a reaction from either one and thinks I should have the flu shot. Even though he is integrative he is still a pharmacist & I do not believe he really understands the complexity of the FQ toxicity.

    That being said I have one friend who had the shot last year before she had figured out a FQ had blown her tendon & said she did not feel it made a difference. I am wondering how much we are making ourselves have reactions to things with our minds?! Or are we really this touchy to everything?! I have stayed away from just about everything from fluoride to eating only organic & antibiotic free.

    I have actually taken the root to work with a Psychologist to help me get through this. I am certainly not saying I think this is in my mind but my anxiety & stress may be holding back my healing and causing relapses.

    You look at this so intellectually that I would appreciate your opinion.

    Thanks as always!

    Your southern B.C. friend,

    Nicole

    • Madge hirsch October 14, 2016 at 11:17 am Reply

      I believe I was made quite ill by having the flu shot in 2010. This was the first year they put the H1N1 strain into the seasonal jab. Before it was given as a separate jab. The early part of 2011 I had a lot of flox type symptoms and looking back I feel it rectivated a floxing I had (unknowingly) in 1999. As I only found out about all this after m y most recent floxing last year I don’t think anxiety about relapses played any part though one of the symptoms I had was anxiety attacks . At the time I did not connect my ill health with the flu jab and I got another in winter 2011. I developed a rotator cuff tendonitis that lasted 10 months and was so bad I could not lift my left arm sufficiently to do my hair. I also got the flu in Feb 2012. Since then I have not had a shot. I am relying on keeping my vit d high and taking NAC. I think flu shots are overhyped and have read convincing stuff about how their efficacy has been grossly exaggerated.

  34. Bronwen October 13, 2016 at 8:02 am Reply

    Hi Nicole

    I have a bias here: I don’t like the flu shot as it enters the body into the blood stream, sidestepping the usual route for flu to arrive, where our defence systems in our nose or skin are triggered in a more reasonable way. I’m not sure my view is valid for those who are at great risk if they do get a bad flu.

    It is also true that a fixed body is desperately struggling to refind a balance. Every supplement we choose to take provides some raw materials that the body might be needing to do so. The flu shot will confuse this body focus for a while. It is hard to know whether this short-term extra body stress is worth the flu protection, because each body has its own set of rules snd reactions. So, even tough I know I would go for immune-boosting instead if a shot, I also don’t want to advise you as I know I may be too biased to be helpful.

    • Bronwen October 13, 2016 at 11:43 pm Reply

      Geez. Spell correction really ruins sentences. My message us supposed to say “floxed” body is desperately struggling, and the word “tough”. Is supposed to be “though”. I should not post from a tablet!!

  35. Nicole Reedy October 15, 2016 at 1:16 pm Reply

    Thanks so much, Bronwen!

    I understand the spell correction as happens to me everyday!!!!

    I appreciate your opinion and Madge’s story

    I will not take the shot this year as I can not stand to have anything more hit me with this craziness!

    I just found myself in a catch 22 as the first time I was floxed without knowing it I was given Cipro for a bacteria infection after the flu. That was 10 years ago when they ran out of vaccine & I did not have a shot.

    I did have jaw problems, anxiety, intestinal problems & depression for a year after that Cipro but never thought about the pill causing it!

    Then I was given Cipro 2 years later for a UTI and got C-Diff & some leg pain started right afterward. I was told that the leg pain was PAD and I knew any antibiotic could give you C-Diff so did not relate to Cipro.

    I have always had a flu shot since that time & know I have had a lot of reactions to medications since but nothing that I did not think was just me.

    The ten years of IBS I have also thought was just me!

    You know what happened to me with this floxing. Even the drs agree with the liver damage, tendon ruptures & neuropathy.

    My inflammation markers are great & I just had a homocysteine blood test as my dr said it would be a fast way to see if I had the MTHFR mutation as it would be high, it wasn’t!

    I know my doc knows what FQ’s can do but all my tests are coming back so good that he can not understand why I am not getting better.

    I have had over 25 or more IV’s with my NP and she is even telling me to get tested for lyme disease as I think she is questioning my new symptoms & relapses!!!

    I am stopping the NP as I have spent thousands with her & can not see where it has gone. I will stay on the supplements. Maybe it is just time!?

    I guess this is a long story to just say thank you!

    I know in my heart I do not need the flu shot as the one 2 years ago was useless for the virus anyway & I did not get it. I am just a old lady that is tired of everything that has been normal in her life scaring her to death! LOL

    Enjoy the cold & snow up there!

    Thanks as always,

    Nicole

    • Bronwen October 15, 2016 at 1:57 pm Reply

      No snow yet! I understand Vancouver and Victoria are in the throws of a storm, though!

      There’s a few realizations that have gradually cemented for me:

      To get better you have to herx. Every time I did something that healed me, it also released toxins or reactions that I’ve learned to think of as the opposing reaction to the initial damage. In other words, when I added liposomal glutathione which was the main cure for me to detox my liver and cells in the body, I went through 2 weeks of herxing. When I started deep exercize or massage in a new part of the body, that would also release what seemed like toxins only the first time that part of the body was opened up, not again, where I would dip for a little, with symptoms like costochondritis, arrythymia, upper back pain increasing, headache, vertigo. When I upped my magnesium to much higher levels in the spring, this also brought a couple weeks of foggier brain, and all the above symptoms. However, I knew that this was necessary to get to the better healed state! I have got to the point where I almost welcome a little downturn as it is really the symptoms releasing on their way out! But yes – it is confusing to figure out what is worsening symptoms and what is herxing.

      I also realize that the body can only heal so much at one time. You have to let it take time and make sure the right resources are there for the healing and then just welcome the up and down roller coaster. I can honestly say that since May or so, my downturns are really minor! To the point of saying I’ve refound normal.

      I also know that magnesium was the magic bullet for me, and have been researching this connection. It seems mag depletion might be at the route of all kinds of the symptoms. Other things and supplements maybe got me there (e.g. removing ROS garbage from my cells) so my body could then take in the mag. But, I would encourage anyone at any stage to up their mag to as high as their body can tolerate (Mag malate, or mag bisglycininate, or mag citrate)- using mag oil and epsom baths as well.

      Healing will come.

  36. Nicole Reedy October 15, 2016 at 2:21 pm Reply

    Thanks for the fast response, Bronwen.

    Yes, we are having terrible weather at the moment! Ugh!!!!

    In all of my research I do agree with the mag. being the most important factor.

    I stayed with the weekly IV’s mainly because of the 600mg of mag. she had in there as at first I could only handle 150mg of mag. I did take the epsom baths & use mag. oil but the external forms were bothering me after the burning started. Then I would get rashes from the mag. cream. Strange this started happening to me.

    I do have my mag. supplements up to 400mgs now. I take three. Bisglycininate, malate & L-threonate. Maybe as time goes on I can up it a bit more.

    I will try to be more patient.

    Thanks again,

    Nicole

  37. Hendri November 1, 2016 at 9:45 pm Reply

    Hi bronwen, really feels good after reading your article.

    I am just 22, i already have spinal disc herniation btw, but that’s only a brief introduction, hehe

    so it was a diarrhea i was given 5×2 cipro 500mg a day, nothing happens (i still don’t know about FQ in that time )

    3 months later diagnosed with a prostatitis and was given levofloxacin 500mgx1 per day, at 8th day i got tinnitus, the doctor STRONGLY SUGGESTED that i MUST continue levo, i insist that i don’t want, he then prescribed me with CIPROFLOXACIN, thank god i did not take it

    so after 1,5 months after i stopped levofloxacin

    I got some twitching, and my hamstring tendon feels not good, even if i don’t do anything, i feel paranoid now,

    yesterday i went to the mall to buy some magnesium, but my hamstring tendon feels bad, I don’t think that’s good

    and i am only 22, i still have so much future ahead of me, sometimes i am sad, and wondering why would this happen,

    i’m also scared about will i got more side effect in the future,

    I am so paranoid that i bought all of this

    Magnesium
    Alpha lipoic acid
    Acetyl L-carnitine
    Coq10
    L-gluthatione
    N-acetyl-cysteine

    anyway bronwen i have some questions bronwen…..

    1. about the intravenous gluthatione, you know it’s hard to find doctors that understand and willing to give me that,

    but intravenous gluthation is used by skincare here to whiten the skins!!!!
    do you think i could try that?
    also what dosage did you take?

    2. i mean all the supplements you took, what is the amount of dosage?

    3. and lastly, what supplements that you think i should take for the rest of my lives??

    REALLY REALLY THANK YOU BRONWEN FOR YOUR ARTICLE,

    hope to see your response,

    Sincerely….

    PS : sorry if my english isn’t that good

    • Bronwen November 2, 2016 at 9:56 pm Reply

      Hi Hendri: I’m so sorry you’re going through this. I do hope your young body has the ability to heal faster than my middle-aged one! It is a scary time and I’m glad you’ve found this website. You will improve, but you will have to be patient and brave.

      What kind of magnesium did you buy? I would recommend citrate, or bisglycinate, or malate. And you can also get threonate online as well, which goes right into the mitochondria where it is needed for cipro victims. I’d also have epsom salt baths often and consider buying some magnesium oil to rub in your skin to get as much magnesium into you as fast as you can. I really think magnesium is critical to healing.

      The list of things you’ve bought is excellent. I would also make sure you are on a good probiotic. Any supplement is only as good as what are intestines can absorb and probiotics make our intestines work better.

      Yes – most doctors won’t have even heard about liposomal or IV glutathione. (I had not heard it whitens the skin. The article I found talks about it removing age spots.) Anyway, glutathione is one of the most important substances to make our liver work properly, and due to all the cell death caused by the cipro (causing your tendon pain) there is so much that the liver is trying to clear out that it eventually can’t very well any more and needs some basic chemistry to keep it going. I’m in Canada, but the only practitioners in this country that I know of that would use glutathione IV would be naturopaths. If I went through the process again I would certainly go for IV glutathione, which is faster than the liposomal glutathione, but you need to be under the guidance of a practitioner who makes sure they’re not providing too much too fast.

      As far as how much lipisomal glutathione I took, I think it was a teaspoon a day – but go at it slowly, because as the toxins leave you can feel worse before you feel better (herxing). I’ve written about this in quite a few of the comments above.

      As far as dosage, I know I would start with half the recommended dosage for a couple of days, move the maximum amount for many months, and now I’m taking a little of quite a few of the supplements still, but gradually cutting some out one by one. I’d start with 200 mg elemental magnesium and move as high as 400 or 500 if your body will tolerate it. Magnesium is hard because you can get diarrhea which is why the magnesium oil can be useful. NAC I took 500mg 2X a day, CoQ10 100 mg 2 X per day, and I can’t remember how much alpha-lipoic acid I took – I haven’t had that one in a while.

      As for supplements I would suggest taking the rest of your life? – magnesium, and a really good B complex (making sure the folate and the B12 are in methylated forms), a probiotic and vitamin D. Maybe omega 3 too.

      Wishing you healing!!!!

      • Hendri November 2, 2016 at 10:49 pm Reply

        Hello bronwen, thanks for your response,

        I am sorry about the spinal disc herniation, i think i’m making a misunderstanding here, i mean i got spinal disc herniation long before i get floxed, and the symptoms sometimes looks the same as like being floxed, hehe

        but i do know these past 2 weeks is not normal, i mean other areas feel pain and also twitching in my body, also my thoratic spine sometimes feel not good if i am sitting for too long

        and thanks about the probiotic and magnesium oil, i forget to mention that i already bought 2 of them….

        and about the probiotic i bought it because i saw it on your site…. really thanks to you

        about the magnesium unfortunately i got the magnesium oxide….

        and about the gluthatione, I saw your website and i thought i found the liposomal gluthatione, but unfortunately i misunderstand with it, and i though that the L-gluthathione stands for liposomal T.T

        so for now i will try the L-gluthatione that i bought although i know the absorption is not good….

        to be honest bronwen, I live in indonesia, and it’s so hard to find liposomal gluthatione,

        and you would be suprised that i’ve never found any literature or stories about fluoroquinolone toxicity in Indonesian languange, I THINK THOSE PEOPLE IN THIS COUNTRY THAT SUFFERS FROM FLUOROQUINOLONE DON’T EVEN KNOW ABOUT FQ TOXICITY, it’s a sad truth here…

        and the funny part is, this country is not like canada, in canada there are so many people with white skin, here in indonesia white skin is considered the best, so skincare clinic take gluthatione IV to whiten the skin…. hehe

        finding naturopath is so hard here, most people don’t even know what is naturopath, but i will try to find it on the internet….

        anyway i have question bronwen

        1. sometimes it’s hard to find supplements,

        but i took most of my supplement from the brand, puritan’s pride, is it good?

        and the NAC comes from Doctor’s best, and it’s the only NAC brand that i’ve found

        2. is glutamine or L-glutamine good? i heard it’s glutamine precursor?

        3. Here most people that want to gain muscle on the gym, they consume WHEY PROTEIN, is L-men brand ok? i don’t have any experience on this

        4. and lasty bronwen, I want to ask you, you said this in your article

        “I am walking up to 10 km, and I almost feel ready to try climb a hill or two.”

        that goes into my mind, you know 2 days ago i go to the mall to look for magnesium, but my hamstring tendon feels not good, i have to rest although i do just moderate walking at the mall,

        and i immediately feel deppresed,sometimes i think if my body is like this at the age of 22, what will i become when i’ve reached age 50?

        so my question is, do i still have the hope???? you know, i don’t ask for too much, at least i could walk without any leg pain….

        BTW REALLY REALLY THANKS TO YOU, YOU GIVE HOPE TO US ALL….

        if you could manage this at age 50, i hope that i could to better…..

        Sincerely, Hendri

        • Hendri November 3, 2016 at 2:09 am

          i forget to mention why i’m stopping the levofloxacin, because on the 8th day i developed tinnitus, and immediately stop, and 1,5 months after that the leg and arm problem started….

        • Bronwen November 3, 2016 at 6:49 pm

          Hi Hendri:

          Based on your notes today, I think one of the most important things you can do is try to find someone who can support you in Indonesia – a doctor who believes you, or an alternative practitioner who may guide you in things like choosing supplements. Much as I would love to help I am no expert – just a person who has gone through a reaction to cipro and written my story. I can only speak about my experience and my research which is limited. If you feel panic rise again, drink something warm and try to relax all your muscles and breathe slowly. I hope you have or can find someone to talk to as well, someone who doesn’t need to understand the medical end of things, but you can reach out to if you need them in the middle of the night.

          As far as should you hope – yes, very much so, but the road to healing can be slow and it goes up and down. Two and a half year later, I am close to normal. Not only does your body need to deal with repairing itself, but it also has to get rid of a lot of toxins that have built up first.

          I would suggest you start all supplements slowly. Sometimes, you body needs the supplement very much, so cannot sort out what to do when it finally arrives. As toxins are released they move into your blood and build up so you can feel worse for a while. This is called a herxheimer reaction and the way to manage it is to gradually start all chemistry additions to your body!

          I am not familiar with the brands of supplements that you mention, but this does not mean they are not good. As far as whey goes, I believe you should try to find some, if you can from antibiotic-free cows. I don’t know how hard this may be in Indonesia.

          I just looked up glutamin and noticed a couple other places on this site that it is NOT recommended.

          Magnesium oxide is unfortunately a type of magnesium that is not well absorbed. When you can, I would try to get one of the kinds I mentioned above. But I’m glad you have the magnesium oil – that is great and will definitely help you!

          I hope you sleep better. And believe that your body is trying very hard to heal you.

      • Hendri November 3, 2016 at 4:53 pm Reply

        Hello bronwen, i am panicking

        have a breathing problem, feels like my breath are shortening and when i slept felt like automatic breath is not functioning

        i get this at night when i went to sleep.last night, and now is at 6 am i woke up, still there,

        but yersterday i took alcar and ala the first time,

        and i’ve checked that trouble breathing is the side effect of alcar and ala, i will stop that for now as one of my facebook friend which is floxies too report the same effect the first few days he consumed his supplements

        i will report to you further results, hehe

        Sincerely, Hendri

        oh and btw i don’t know about the leg pain, it’s hard to tell because i have spinal disc herniation before floxies, but i think the pain has subsided, hehe

  38. Hendri November 4, 2016 at 7:37 am Reply

    yes i’ve found that glutamine if converted into glutamate inside the body could become toxic to the nerve, scary….

    i see you live in Canada, so i just saw a product called immunocal from immotec (canadian company)

    is it good brand?

    i mean the box said it’s whey protein isolate powder ( not saying undenatured)

    but i do find their FAQS claiming that i’s undenatured and not containing any antibiotics or pesticide residues

    here is the FAQ

    http://www.immunotec.com/IRL/Public/en/USA/ShowItemDetails.wcp?Item=00010000

    Maybe that is the only brand i could find here that claiming about undenatured and free or antibiotics…

    what is your opinion about this?(since you live in canada maybe you know about the company) and i can say that their products i more expensive than reguler whey (the one they used to gain muscle on the gym) so i think maybe it’s reliable

    Sincerely,
    Hendri

    • Bronwen November 5, 2016 at 11:58 am Reply

      Hi Hendri:

      I think this looks like a great whey source, and they’ve manufactured it so as it to boost glutathione specifically, so looks like a good supplier to me!

      • Hendri November 6, 2016 at 12:10 am Reply

        Hi bronwen, so 2 days ago my symptoms seems to get better, but i don’t know which one, maybe it’s NAC, but the night before for the first time took ala+alcar combination, (i discontinued due to trouble breathing, btw i took 2 capsules at one time because the directions at the bottle) so maybe it could also because of ala+alcar combination

        so yesterday i began to took all the supplements again except ala+alcar combination, and this morning i even ate broccoli (2 minutes of cooking without any seasoning) and i feels the weary knee and hamstring again

        i wonder if this because i didn’t take ala+alcar combination anymore….

        i want to take it but somehow i am scary of the side effect (trouble breathing)

        i am thinking about lowering the dose to just 1 capsule of ala alcar combination…..

        i will give you further report

        btw do you still feel weary/weak leg after so long?

        Sincerely
        Hendri

        • Bronwen November 6, 2016 at 11:56 am

          I found symptoms went in a very marked cycle of getting worse and better and this is typical for others who have experience fluouroquinilone reactions. I found symptoms would go in almost a weekly cycle of feeling mostly OK and then dip way down to feeling awful for a couple of days before moving back to better, and I could only see the overlying pattern of improvement month over month.

          Often when supplements are helping, they also create a herxheimer reaction, as I mentioned in an earlier email – as the toxins from damaged tissues have been trapped in the body, and the supplement allows them to start moving out through our liver, then the body experiences these loosened toxins in the same way the original damage was done. However, in this case, the toxins are on there way OUT, instead of IN, but the body reacts because they are circulating through it. Maybe read up on herxheimer reactions. This means any supplement that you feel may be beneficial to you may make things feel worse before they feel better and the way to control this is to take a very small dose to begin and work it up over a couple of weeks. Perhaps you could break open a ala/alcar combo capsule and pour out half the contents and start with just half of one for a few days?

          Our bodies do not read textbooks so I can not advise each step for you. In addition to all the wonderful research you are doing, you will need to listen to how your body is reacting quite closely and then change dosage/approaches accordingly.

          I never had leg problems/weakness, my problems were all upper body, and yes, I would say they are 90% better now.

          You will heal!

  39. Hendri November 6, 2016 at 8:18 pm Reply

    I think i will follow your suggestion about ala alcar,

    and i just ordered immunocal to see will it gives me detoxification

    i saw a review on amazon, the person said that she drank that and immediately feel something, she didn’t know about detoxification or fluoroquinolone, but another person replied, he suspected maybe the person that complaining have eaten a drug called fluoroquinolone in the recent months…..

    I don’t know but i have a feeling that acetyl l-carnitine could help me, i just saw the uses on webmd

    and about d-ribose it said that it could help with muscle fatigue, so i will order that in the future,

    this FQ costs me a lot, i hope i will get better

    I will talk to you soon bronwen….

    See you next time….

  40. Genevieve November 8, 2016 at 3:41 pm Reply

    Hi Bronwen,
    I ordered through my NP a bottle of PURE Encapsulations brand Liposomal Glutathione, which came today. The bottle recommends one capsule per day, so I’ll start there, but do you have any advice on whether to take it with food or not, or anything else? I’m always a bit scared of each new supplement, but you’ve made me a bit more brave about herxing, with all that you’ve written. Any opinions you have on Liposomal Glutathione will be very welcome.

  41. Genevieve November 8, 2016 at 4:00 pm Reply

    And I have to add that I’m a bit nervous about the Liposomal Glutathione, since I do still have a number of amalgam fillings plus the double mthfr mutation. A lot of what I’ve been reading on the subject seems to imply avoiding the liposomal glutathione as long as one still has the fillings. But I did order it, and I have it. It’s very pricey, so I wish there were some more definitive answers for this. If you if you know of any, please do tell.

    • Bronwen November 8, 2016 at 8:40 pm Reply

      Hi Genevieve. I have amalgam fillings but I never read about this connection until much later. So, fillings and all, I took liposomal glutathione, and yes had a herxheimer reaction that went on for about 2 weeks – but out the other side was a real improvement. But I think you can be wiser than I was – I think you can moderate the herx by moderating your dosage, upping it very very gradually so the body is not overwhelmed while it manages to unload the loosened toxins. I probably pushed through mine a bit too hard as I was desperate to get better and my body had always been so strong until then – I didn’t realize I needed to be more gentle on myself. I managed to find some old notes and I was taking 450mg twice a day. I looks as if the capsules of PURE Encapsulations brand are 250mg so this seems like a good dose to start on. Maybe just one every 2 days and see how it goes?

      And gosh – wouldn’t definitive answers by awesome? Every body is different. All I can say is what worked for me.

      Wishing you healing.

    • Jason November 10, 2016 at 9:02 am Reply

      Hi Genevieve. Your Gut feeling after what you have read is correct, and moreover it is not just for those who have fillings, it is for anyone who has already accumulated a significant amount of Mercury, as the Glutathione makes a POOR bond with the Mercury, which means it does mobilize it, but does not effectively get rid it, many people end up damaged, often Nerve damage but it damages many other ways as well and it is NOT a Herx effect in this case like with many other treatments, it is damage from the Mercury being shifted around which is extremely toxic. If someone was to have NO Mercury, then someone might have a Herx effect from all the other toxins being mobilized, and Glutathione would be a safer treatment, someone might still have some of this Herx even with the Mercury, but when there is Mercury, there is a chance of being damaged, this has been demonstrated many many times over, over many years. Not everyone gets damaged, some get lucky, I have seen some people do 2 IV’s of Glutathione for example and not notice anything, then the 3rd one badly damaged them, sometimes it can be permanent. Of course IV’s have the potential to do more damage, and have, simply because they are mobilizing more Mercury all at one time, which, just like it sounds, is a REALLY bad idea. I have done extensive research on this and unfortunately all the alternative Doctors do not understand this aspect they are following a few flawed studies (as they often are, too many variables) and unfortunately are misleading everyone else on this. Glutathione is extremely important in the body as I noted somewhere, and it has been shown that it is much safer to “promote” it rather than supplement it.

      This is the gist of it, you can read a little more on this by going to this page, https://floxiehope.com/comment-page-62/#comments and starting at my comment at “Jason October 13, 2016 at 7:33 pm”, just search the page with your web browser its not far from the top. Then read all the following comments, and you will see for yourself some stories of damaged people. Then, on the very next page, you will see FOUR NEW damaged people, who took Glutathione and came to post about it wondering what to do now, just after I finished posting about it. You will also see someone who read all this, and still wants to see a “study” on how Glutathione can damage someone, otherwise they are not convinced, some people don’t really understand the nature of such studies, I explained this in one of my posts. For example we have studies saying Amalgam Fillings are perfectly safe, and then just as many showing they are NOT (and they truly are not), 1000’s of examples like this, many studies are NOT worth the paper they are written on, there are simply just too many variables. So even though there are some, I never bothered posting them, if she really wants to see them first off she is foolishly ignored EIGHT damaged people just on 2 pages here, 2nd her logic relying on studies is flawed as explained, 3rd she can do her own research. One of the damaged people on that page is a regular poster here, Ryan, who was taking it orally, he started developing Neuropathy, he stopped, and lucky for him the Neuropathy eventually went away, the other 3 were new or newer people, Ryan believes that his CBS Gene is the culprit as you will see there, and Ryan has also seen that many people have been damaged and he noted this on the page. So, at best, its a Russian Roulette game with Glutathione, and not one Floxies would be wise to play, IMO. Good healing to you

  42. Ann November 16, 2016 at 1:35 am Reply

    Hi Bronwen
    Can i ask you a question about your heart. I never took a fluoroqinolone, but i took flagyl over a year ago, and im in a really bad sharp. Like you, my heart seem to have been Hurt very bad. How is your heart health today? What supplements did you feel helped most? I take d-ribose now. Have not helped my heart, but i have a little more energy. I tried magnesium, but i reacted very bad. What do you feel helped you most? And how are you feeling today? Im really scared about my heart. Had a heart rate up to 219, but now its up to 140. Sorry for my bad english. Thanks for listening. Ann

  43. Michael December 3, 2016 at 8:28 pm Reply

    Thanks for sharing! I’m ~ 6 months out, and doing better, but have fatigue too … along with Tinnitus. I was already taking a lot of the supplements you noted, but ordered 4 more based on your study/recommendation. You might note I got sidetracked with Xanax because I wasn’t sure what was going on, and I had severe depression and anxiety. Mg made a big difference for me, and fortunately I started taking that early. Recently I took an iodine supplement which seem made a big difference too, so I’m getting my thyroid checked Monday. Anyway I want to wish you the best of luck and look forward you having a full recovery!

    • Bronwen Duncan December 4, 2016 at 11:57 pm Reply

      Thanks Michael: I’m glad you’re finding your path through being floxed. What a journey! Awful, but in the end I think it teaches us a lot about how strong we really are. I wish you the best of luck too!

  44. Harrison Passante April 3, 2017 at 12:29 pm Reply

    I need help finding all of these supplements. Cipro has taken the last four years of my life from me. I need to stop it.

    • Bronwen Duncan April 4, 2017 at 8:35 pm Reply

      Hi Harrison: I live in Canada, so probably have different sources for supplements than you do. My top priorities for you: I would look at Amazon or any online vitamin store for magnesium malate, find Thorne’s Stress B complex online (lots of suppliers). I’d also order acetyl-L-carnitine if your nerves/brain has been affected, or if it is more the tendons, I’d take L-carnitine. Later on, after writing my story, I also found collagen (from fish scales, not pigs) made a real difference and most recently I’ve been taking iodine in the form of kelp tablets. These can be found online through many suppliers too. MitoQ is only from one supplier and expensive but worth it: https://www.mitoq.com/mitoq-5mg-capsules-60.html and then you should probably detox too. There is certainly some controversy about liposomal glutathione – it worked well for me, and as my story says, I needed something more powerful than NAC. However, you may want to try NAC and see if it makes a difference. Please read about the herxheimer effect when you detox – covered in a number of comments above. You will improve – it is a very slow process and you have to steer your own way through it. I’m SO much better than before! Reading the experiences of people who reacted similarly on this website can certainly help you identify what might help. Sending you every healing wish!

  45. Pamela April 17, 2017 at 7:40 am Reply

    Hi Bronwen!
    I just read your story and it has given me hope. I am at my witts end. All of my symptoms started in July 2015. I went to Punta Cana and a few weeks after I returned I started having low grade fever and severe pains in my joints. My Dr did my blood work and the inflammation level in my body came back elevated (sed rate and cpk) I was told it was a virus. After weeks of having fever and joints pains I kept telling my Dr this is not a virus something is wrong. I felt so fatigued and weak and the pains in my body were horrible. Especially my arms and neck. My Dr sent me to an infectious disease Dr and she tested me for all sorts of tic borne viruses and weird tests and nothing came out abnormal except for the inflammation level in my body. So she sent me to a rheumatologist who diagnosed me with psoriatic arthritis. Not convinced it was that I went to see another rheumatologist and was told I had reactive arthritis that was triggered by a bacterial infection. She asked me if I had a Uti before it all started and I said I’m sure I did b/c I get UTI’s very frequently. EVERYTIME I have gotten one and I’m talking it’s been years I ALWAYS take cipro!!! As a matter of fact I filled a prescription right before I went to DR b/c I knew just in case I got one when I was there I had the medicine on me which I ended up needing! I went to my rheumatologist like 2 months ago and told her that I have realized that every time I get a UTI my joints flare up terribly. SHE even gave me a script for cipro b/c she sent me for blood work and I asked her to do a urine culture on me which came out positive so she called me in cipro!!!! WTH why hasn’t ant Dr I have been to connected the dots in realizing it was the damn cipro?! About a month ago a friend of mine posted an article on Cipro and how dangerous it was and after doing some research I finally realized “omg it’s not the UTI’s it’s the damn cipro”..this drug has ruined me. I’m 42 years old and I have joints of an 80 years old. I’m petrified that it will be worse when I’m older. The past month I’ve been getting such horrible hip pains now. I’ve gained weight b/c it’s so hard to get myself up and moving. Most days I feel so extremely tired it’s absolutely awful. The joints that hurt the most is the hips, both arms and my right knee sometimes kills me as well. Sometimes I get numbness in my arms/hand/leg. Ive also been getting chest pains as well. Why is this medicine on the market I don’t get it? Has there been any law suits against this drug company? I feel like this drug has ruined my life. My question to you is based on my symptoms which vitamins do you think would help me? I saw all the ones you listed can u tell me which ones I shpuld start with and how many mg I should take? Please any help would be so appreciated. I’m desperate to try anything at this point to help these joint pains and constant fatigue. I also get brain fog and can’t remember anything! Ugh…damn cipro!
    Thank you in advance for any light you can shine on this horrible situation.

  46. Bronwen Duncan April 17, 2017 at 10:40 pm Reply

    Hi Pamela:

    I’m so glad you’ve discovered that what is damaging your body is Cipro, and so sorry you are going through this! There is no magic overnight cure. Improvement is gradual, and up and down. I believe healing all Cipro reactions are based on two things – helping your mitochondria work better and detoxing all the waste products stuck in your body from the mitochondria being compromised. I know how hard it is to be feeling very down and alone, but you’re doing the right thing by reaching out to those who have gone through something similar. Believe you have the capacity to heal and be patient.

    I’m going to paste a bit from other answers above as I’ve addressed the first best supplements before. Your body is limping is likely to be limping along without enough of some pieces of chemistry it needs to accomplish both tasks. I will suggest what I feel are the most important supplements but please remember I am no doctor, and I only speak from my own experience and my non-professional research. Taking any supplement is a decision you need to feel OK about, and do your own research on.

    So now to bits of chemistry your body might benefit from. (They all cost money which is not fair, but I don’t know any way around it): B complex that includes all the B vitamins but must have the folate (B9) in a methylated form and B12 in a methylated form too. This is a good one: https://www.thorne.com/products/dp/b-complex-12 and https://www.amazon.com/Genestra-Brands-Complete-Supplement-Vegetable/dp/B009AWOLG8 B vitamins are good for nerves.

    Magnesium – Magnesium malate or Magnesium bisglycinate – both can give you the runs if you take too much too fast, but I would ALSO take Epsom salt baths – which bypasses you digestion to get magnesium in your body. Magnesium oil also does this and is a great way to boost the magnesium Cipro strips from you. I had to boost my mag first with the oil because when it is very low in magnesium it has a hard time absorbing through the gut. So may advice – take mag malate or bisglicinate for a max of 200 elemental mg and rub some mag oil – I found on my tummy worked well at least twice a day. Health food stores carry magnesium oil. You will find over time, if your body will accept the magnesium more readily. I now take up to 500mg elemental magnesium a day but work up to that gradually. It is my understanding that it is hard to get too much magnesium, as you pee out excess unless you have bad kidneys.

    I would also recommend an additional type of magnesium as this one goes directly to the mitochondria and brain – Magnesium Threonate. Look it up on amazon. This can make a big difference to brain fog.

    Also to boost your mitochondria, I would suggest MitoQ from New Zealand. As the name hints, it is CoQ10 which targets the mitochondria. IT IS expensive, but much more effective than CoQ10. I’d also take acetyl-L-carnitine – good for nerves and brain.

    So, these are the most important supplements to boost your mitochondria, but now you need to be able to get rid of all the by-products jamming up your system causing oxidative stress. You liver needs to boost its glutathione production – the main oxidative king. This can be done by eating whey protein, or by taking NAC (N-acetyl-cysteine), but neither worked when I was at my worst and I had to resort to liposomal glutathione. I should mention at this point that there is quite a bit of controversy about liposomal glutathione on this site. I found it was a lifesaver for me, but others say it can mobilize mercury in fillings, etc. If you decide to consider liposomal glutathione, I would suggest it would be very beneficial to manage the use of it via some alternative healthcare provider– such as a naturopath, or a Functional practitioner. They might suggest other options too, like Nicole noted in the comments on this page the suggestion of Milk Thistle from her Chinese medicine practitioner. Regardless, you need to take it slowly. If you just eat glutathione, the body digests it as food, but liposomal glutathione wraps the glutathione in little fat coating, so the body takes it off to store in the liver, where it is needed. But this can be very stressful on some bodies as when the body starts to detox, the “garbage” is loose and running about, causing more of the very same reactions it had as the toxins arrived. This is called a Herx reaction. People also have glutathione via IV, some with much success and for others it is too much.

    When you start healing, the road bumps up and down quite a bit, as you alternate between the body feeling better, and herx reactions pulling it down again. I found for a long time, it would be a weekly cycle, which eventually lengthened. Even now I dip a bit every second month or so, but I’m 90% better or more. And I’m in my mid-50s so do not have youth on my side.

    I hope this has helped somewhat. I wish you every strength and perseverance! You will eventually improve!

    Bronwen

  47. Jason May 12, 2017 at 7:47 am Reply

    For anyone interested, there are 5 new people on the current main page who have been damaged by Glutathione. It is NOT just a Herx reaction, which makes it sound fairly harmless, some people end up disabled like one of the people on the page there. Also, it does not just mobilize it from fillings, it mobilizes it from the bodies deep storage where it was somewhat “safely” stored, and moves it around sometimes to much more sensitive places. It makes such a weak bond with it that it does not effectively remove it, this is why it not a good idea.

    Bronwen glad to see you are warning people of the potential dangers good job 🙂

    • Bronwen Duncan May 12, 2017 at 8:00 am Reply

      Yes – I warn people because I have read of others having problems and don’t want to recommend something harmful, but having said that, liposomal glutathione was the substance that started my turn around in a very positive way. I’m very glad I took it, and there are others that feel the same way. I have found every time I’ve taken something that eventually helped me it has caused some kind of herx, to the point I actually welcome it. But that is me and my body and I used to be very resilient. The moral of the story is that all our bodies are different. I am not a doctor, I don’t understand every ramification of taking every substance, and the fact is, doctors have no further insight either. As floxed people, the most important thing each of us can do is own our own story, our own healing, and our own path forward.

      • Jason May 12, 2017 at 9:26 am Reply

        You couldn’t be more right about the Doctors, clueless, and unfortunately I am referring to the “good ones” who are unknowingly damaging people with Glutathione because they don’t fully understand it or what it does.

        I believe every reaction, good, or bad, should never be ignored, part of how I learned as much as I have was just being around sick people in forums for the last 10 years doing exactly that.

        Good healing to you, Jason

  48. pamela May 26, 2017 at 11:57 am Reply

    Hello! I am having a difficult time finding the R+ Alpha Lipoic Acid, the plus version. May I please inquire which brand was used. Thank you so very much for your article and listing of items that helped with your recovery.

    • Bronwen Duncan May 29, 2017 at 7:21 am Reply

      Hi Pamela: Sorry about the delay in responding. I am in Canada, so often use the AOR brand of supplements (from Alberta). Basically it is a matter of finding a source of R lipoic acid instead of the conventional S lipoic acid. R lipoic acid delivers the most effective form of this valuable antioxidant without the negative actions of S lipoic acid. With a quick google search seems like the companies Thorne, Jarrow and LIfe Extension all have versions, and they are all excellent suppliers.

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