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.

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

  1. Aidan Walsh May 14, 2015 at 7:41 am Reply

    Ehlers Danlos Syndrome Wikipedia most undiagnosed condition in medicine…

    • Lisa Bloomquist May 14, 2015 at 7:51 am Reply

      I’m sure that there are many people who have undiagnosed EDS, but I’m still perplexed as to why you think that those who are suffering from FQ toxicity have EDS. I’m assuming that you’re trying to help, which is great, but I don’t see how your claims about FQ toxicity being undiagnosed EDS aren’t completely baseless. Some of the symptoms are the same? Great. A lot of most multi-symptom, “mysterious” disorders are the same. The symptoms of chronic Lyme are similar to symptoms of AIDS, that doesn’t mean that they’re the same or that one is a misdiagnosed case of the other. IF your claim of people being sick with FQ toxicity is related to EDS (which I doubt), just know that none of the people with FQ toxicity were sick at all before they took a FQ. Are you saying that the drug brought out the disease? That’s quite convoluted. It’s more likely that FQ toxicity is FQ toxicity. There are, after all, hundreds of peer reviewed research articles about the deleterious effects of fluoroquinolones.

  2. Aidan Walsh May 14, 2015 at 8:20 am Reply

    That is because numerous sites rising up about recoveries but when people take the time to reallIy look into & read so called recoveries they are not recovered…Diseases of a thousand names Lyme CFS Fibro M.E. now we have aside from Lymies Floxies seems

    everyone is running from a CFS diagnosis, yes EDS is important it is the most undiagnosed Genetic condition in medicine I bring awareness to people I follow the proven Science I have seen countless patients given the wrong diagnosis in fact it now comes up in GWI as

    well..All the Vitamins Minerals are the same in all these ‘Labels’ the same for unreplicated causes take the time to read the SEID report paying attention to what Dr. Peter Rowe writes on EDS connections…There are too too many books out now giving false hope to sick

    individuals who actually have serious born Family Genetic mutations it is speculation that Floxies are any cause even to say its radiation injuries unless that work is proven & replicated…Not everyone has to fully agree with your site or postings afterall we all have a

    say in this matter to agree or disagree but I do not see recoveries as depicted here I still believe it is undiagnosed EDS with or without joint hypermobility, is it possible that these medicines tripped off people yes it is but it is not proven but only theories…Numerous sites

    also pop up on thyroid issues but again they are all speculations & yes they sell books as well…I am not here to disagree I am here to try to show people that there are other reasons why they are sick & the links involved…There is no cause for ‘all’ these ‘Label’ illnesses

    next month it will be another cause of false claims speculations…Ehlers Danlos Syndrome Wikipedia

    • Lisa Bloomquist May 14, 2015 at 8:37 am Reply

      Or maybe people have what they think they have and it’s awfully presumptuous of you to think that they “actually” have something else.

      By all means, floxie friends, look into EDS. It’s a real disease with real genetic and epigenetic causes and it can be helped with lifestyle changes that trigger epigenetic changes.

    • Bronwen May 16, 2015 at 8:19 pm Reply

      Thanks for pointing out the possible connection of FQ reactions and connective tissue genetic disease. It is certainly something I have considered, particularly as my connective tissue is not great. But it is important to not over simplify things. There are number of connective tissue diseases. Genetics is amazingly complicated, with a combination of SNPs causing a disease, not just one SNP. (I love this easy-to-read explanation: http://suzycohen.com/articles/snpsmethylation/) I’m really not sure those prone to mitochondrial damage via Cipro may all have the same SNPs, same triggers, or same symptoms. And none of our bodies work perfectly – they are just really good at working with their own sub-perfect pieces, even manufacturing less than ideal ways to ensure our organs continue to work. And as I mentioned above, just because we give a disease a label, we do not necessarily understand what to do about it, or how it works. If I end off knowing what SNPs triggered my problem, it is not likely to really fix anything in my body – all it can do is just allow my blood relatives know if they might share the same genetic risk factor. But whatever the genetic trigger, it does seem that mitochondrial damage is now gradually being recognized as the common denominator of so many maladies, and I am pleased more scientists are trying to figure out how to best support these little life-giving energy factories.

      • dan hedrich December 10, 2015 at 2:22 pm Reply

        hello bronwen, you mention in your post of worsening of symptoms and mitochondrial damage. i have a new symptom pop up every day as i stopped levaquin 21 days ago. whether it be some kind of new joint pain or tingling sensations in hands, feet, legs, itchy skin at times joint crackling. the only thing that has subsided are the chills that came on at night. the pain so far has been annoying and i have not taken any pain meds, only live force multi and magnesium-gly. i wish to try liposomal gluthione or maybe nac or l-caratine. what are your suggestions i dont want this to get worse or should i give it more time. i also notice itching of bottom of my feet in the past 2 days i am wondering if this poison is trying exit. it happened to me the day after i stopped the drug accept it was much worse. thanks dan.

        • Bronwen December 10, 2015 at 8:10 pm

          Hi Dan. I don’t think the tingling is poison trying to exit. I think it is your nerve compromise from levaquin. The thing about mitochondrial damage is that it is cumulative and our organs can handle so much before showing us symptoms and then they can’t keep up with the oxidative mess the cipro has caused and cell death begins. This is connected to the METHYLATION CYCLE being broken so the mitochondria can not use their RNA and DNA properly and can only limp along with a sub-optimal substitute cycle, gradually losing the battle as the byproduct oxidative stress builds up. I believe you’re asking great questions and relatively early on in the process, so with more ability to reverse the damage which is happening. Don’t give it more time. Spend a couple hundred bucks on supplements and maximize your chances of not getting much worse – I got worse and worse until I found glutathione (along with the other supplements).

          I checked out the Life Force Multi to see what is in it. It looks like a super list of ingredients and even includes some NAC. My only concern is the kind of Folate it offers. One possible cause for people reacting to the flouroquinolones is that they have the MTHFR gene mutation which means they don’t metabolize folate well so when the FQ pulls folate, magnesium, and other essential chemistry for the METHYLATION cycle, we don’t have enough of these resources left in our stores to fill the gap. These people need folate in a methylated form (sort of half-digested) such as 5MTHF as well as the methylated form of B12 which you’re already getting in your Life Force. However, I would suggest you get the best over-the-counter B vitamins you can and the best resource I’ve found where you don’t have to go through a naturopath is AOR’s Advanced B Complex (or Thorne’s stress B). For the best overview of the importance of the extremely complicated methylation cycle go to: http://www.drkendalstewart.com/wp-content/uploads/2011/09/Methylation-Overview-for-Professionals-10.11.pdf

          So you need to try to fill gaps with methylated folate and magnesium as you’re already doing. For magnesium, I’d also go for the kind that enters the mitochondria/brain/nerves and this is Magnesium Threonate. This company makes it cheaply: http://www.absorbyourhealth.com/product/magnesium-threonate-500mg-100-capsules-nootropic-absorbable-mag3/ Take this in addition to the other magnesium you’re on. Unless you’ve got bad kidneys you’ll flush out any extra.

          Now to liposomal glutathione: Yes. I was lucky to run into an amazing practitioner who ran an alternative pharmacy, prescribing both traditional drugs and alternative cures. He explained that IF your methylation cycle is broken, NAC will not help you, as it is the precurser to glutathione and your body will no longer be able to make this chemical shift. NAC is cheap, and liposomal glutathione is not, but if I was you, I would probably just jump for the big guns right now, because glutathione will clean up the oxidative mess so things can start moving more normally for sure, but NAC may or may not at this point. You can move onto it later. It must be liposomal – see why here: http://glutathione.wellwise.org/how-do-liposomes-work. Non-liposomal will get recognized as food in your gut, not the essential master-antioxidant that you need. But a word of warning – you need to start with a very small dose. As the glutathione removes the toxins from where they are hiding, your body recognizes the “bad guys” and tries to react to what seem like new invaders, so your symtoms are likely to increase as the toxins swirl about on their exit. So, take just a 1/4 dose for a few days, and up it very gradually, expecting to not feel great for a while. I turned it around in two weeks. Now, some people don’t react at all, and maybe you’re one of the lucky ones.

          As far as L-carnitine, it certainly will not hurt at all – especially as you’re getting nerve issues. Many athletes take it. And eat very well – the best diet you can manage. Avoid pain meds as they make help pain, but they make the symptoms worse.

          Let me know how you fair…Best of luck…It is a rather awful, strange journey…you will get better. This does turn around. I promise.

        • Mark S January 8, 2016 at 12:47 pm

          I just ordered my Liposomal glutathione and I am super excited! Going to take a dose every morning and will report back with results after a few weeks. Also just received my Magnesium threonate so hoping this will be a good combo to kick start my healing after six months of hoping to get better. Thanks so much!

        • Bronwen January 8, 2016 at 8:05 pm

          Hi Mark. Wishing you strength and healing!

  3. Aidan Walsh May 14, 2015 at 8:35 am Reply

    Yes it is plausible that Floxies brought out EDS is suseptible people with these born Genetic disorders but again that is only ‘plausible’ I am also aware of numerous papers on floxie damages I am also aware of numerous papers on radiation injuries but there are no

    ‘Cause’ proven to date as any causes in these ‘Label’ illnesses I will give you just one case here Cher diagnosed in the 80’s with chronic ebv another unproven label of CFS Labels she has the attached ear lobes plus other facial traits so does her Mother as well not all wil

    have attached ear lobes in EDS she was diagnosed with the Labels of a thousand names…I will bet Cher has ‘undiagnosed’ EDS also read about a woman MP in the U.K. diagnosed as a child with label M.E. she was in 2013 rediagnosed with Ehlers Danlos

    Syndrome a genetic born condition of Collagen deficiency the body falls apart that includes the heart muscle as well…Type no.4 is the Vascular type all types are considerd chronic, unless we all as a whole fully understand all the ‘ifs’ involved recoveries will be impossible…

  4. marianne (@vogelfan1) May 14, 2015 at 2:06 pm Reply

    thank you for your inspiring story, nice you mention Ruth Young she inspired me and helped me a lot and also thank you Lisa !

  5. Carolyn September 5, 2015 at 7:48 am Reply

    Excellent write-up Bronwen! Reminds me of much of what I have gone through as well, though I took longer to realize it was the cipro that caused so many of the symptoms. Your story and detailed list of supplements will be very helpful to others . Glad to hear you are on the road to recovery – I feel I am as well, much stronger and more flexible than I was only 6 months ago – its so important to take note of the minor improvements.

  6. Ms. A September 5, 2015 at 12:28 pm Reply

    Well done, Bronwen. Well done! I just wish I had understood more about this before my Son was knocked down with them. Perhaps the knowledge could have saved his heart. With much insistence from me, he was finally tested for a couple of genetic clotting issues and found homozygous for C677T MTHFR mutation. Wish they had taken it more seriously and checked it from the start, instead of waiting until he was in the hospital for a transplant and after numerous failed pumps, due to clotting. As it is now, he will be on numerous, dangerous medications for the rest of his life, in order to keep from rejecting that heart, which scares the life out of me. Each of those medications can deplete his body of vital nutrients and they don’t address that at all, they just add another medication. God help us all!

    • Bronwen September 6, 2015 at 3:02 pm Reply

      So sorry to hear of your son’s situation. All we can do is move on from where we are, and hopefully use the internet to keep informed or at least know what questions to ask. Wishing you and your son strength.

  7. Andrea September 5, 2015 at 1:36 pm Reply

    Thank you for your thorough and well written story. I think it captures the slow unfolding of FQT and I wish I had known this all when my story was unfolding. I have had similar reactions and started from a similar place of health and being very active. I am going to return to a few of the supplements you mention to hopefully assist my recovering body. I already take many of the same supplements. I am recovering and plan to continue recovering. I am at 1.5 years now. The only thing I can’t seem to tolerate is quality CoQ10 supplements. My arms begin tingling and go numb when taking them. Too scary for me. Wishing you well.

  8. Bronwen September 6, 2015 at 3:18 pm Reply

    Hi Andrea: I found I didn’t tolerate one type of CoQ10 well either. I ended off only using CoQ10 that is in lipid form – Thorne Q Best and AOR Co-Q Plus are two. Both these companies are fantastic. Of course the MitoQ targets the CoQ10 exactly where it is needed, and although expensive, probably worth it to get your body absorbing what it undoubtedly needs after Cipro reactions. I have a theory that when our body desperately needs something it has more or less run out of, it has a hard time taking it in. I definitely found that true with magnesium – I had to resort to types of magnesium that are the most absorb-able (through the skin and threonate, to make it absorb).

    I’m curious if your symptoms involved the heart as well. I’d be interested in anyone’s experience in long term cipro heart healing experiences…it doesn’t seem to be the norm.

    I’m now almost at 1.5 years too, and find my healing, although much better than 6 months ago, has plateaued over the last while. I’ve upped some of the supplements I was cutting back on. It is mostly my heart that seems to not have the endurance it did and some days of significant arrhythmia. I don’t want more drugs from a cardiologist, so just believing I still have the ability to keep slowly healing. I keep wondering if there is some other core piece of chemistry that was removed from my body by cipro and that my body now needs. I feel it working hard to try and right the imbalance and it is getting there. I expect there are substances that science has no way of measuring in our bodies that are important, so I’m trying to eat a great diet to fill in the gaps, even going back to eating red meat, thinking it might have something good for heart muscles in it!

    Wishing you all the best too…

    • dan hedrich December 10, 2015 at 2:33 pm Reply

      bronwen, hello my post and questions are farther up for dec 10 -2015.

      • dan hedrich December 11, 2015 at 2:33 pm Reply

        hi bronwen, thank you so much on your info. as you know i started taking life force multiple with 200mg of doctors choice magnesium glycinate. i have to say i have not much tingling sensation and few muscle spasms today but the pain was about the same today in some fingers, toes neck and ribcage. i started this morning with a pill and a half of life force using a pill cutter along with the mag, fish oil and probiotic which i took first. i would say there is about a 40% to 45% improvement.the only thing that scares me is – is that it may be just maslking my symptoms. i spoke with dr manfred muller hollistic guy out in california he tells me that he has a almost sure cure but to send about $400 dollars and he would send me a kit of holistic medicine and said that its the way to go. but on many recovery posts i did not see to many people using holistic stuff, not to say it does not help. i am 47 years old and up until 3 weeks ago i was playing basketball 2x per week in a mens league. i am going tonight not to play but talk to a buddy of mine who took levaquin years ago and said it took him almost a year to recover. i will get more details from him. on a last note i am going to order liposamal glutathinone by a company called pure. i dont know if you reccommend a different brand. well thats about it. please let me know how you are doing. once again thanks. dan.

        • Bronwen December 12, 2015 at 3:34 pm

          Hi Dan. I don’t recommend any particular brand of lipisomal glutathion. The stuff I took was made by a compounding alternative pharmacy near where I lived in Canada. It was cheaper than online but I believe there are many good brands.

          You ask how I am doing. I’m now 20 months post flox and much better but not quite where I was before. I find that although I feel very nearly normal most of the time my tendons in my upper body feel tighter and more reactive and every couple of months I get a week or so where I dip, feeling tired and my heart beats more erratically and my chest and upper back hurt. It’s usually after I’ve overextended, which was never an issue for me. I always thought of my body as a workhorse, but now I stay active, but not overactive for more than one day in a row. I don’t have quite the resilience so continue supplements. I think I will continue to improve and realize I’m still way more fir than most in their 50’s.

          Anyway, wait 2 weeks until you determine whether the glutathion is helping and remember to start it gradually. Let me know how it goes…

  9. Marc Thavenot December 12, 2015 at 2:38 pm Reply

    Hi I am Marc and i am a floxie victim and was wondering if anyone had any insight on what kind of local anesthetics are safe for a dentist to use on a floxie? could their be any reactions?

  10. Bronwen December 12, 2015 at 3:35 pm Reply

    Hi Marc. Great question and something I have wondered too. Maybe Lisa has some insight?

  11. madge hirsch December 19, 2015 at 4:34 pm Reply

    Hello Bronwen, I was very interested to read your account as you are the first one I have read so far who has mentioned heart problems and costochondritis. I have suffered from the latter for nearly 20 years on and off. Also about 20 years ago I had a lot of Achilles tendon problems. As I moved countries in2001 (from UK to France) it would be very difficult to get hold of my English medical records to see if I was given a fluoroquinolone antibiotic so long ago but it is entirely possible.
    In october 2014 I was hospitalised for acute diverticulitis and given IV Flagyl and I am pretty sure Cipro. After 24 hours I started to feel some pain in my right Achilles tendon along with other symptoms. I did not associate this with the treatment and said nothing to the nurses. After 48 hours I started to feel very unwell with chest pain and pins and needles down both arms. The nurse called my gastro consultant who asked if I had a heart condition and I explained that as I had chest pain for a few years and my father had died of a heart attack aged 40 I saw a cardiologist every 2 years but all my ECG ‘s had been normal. She rushed off and fetched the ECG machine and sent for the cardiologist. After the ECG and the examination they said everything was normal and the cardiologist said rather dismissively that I had “rheumatism” in my chest. However I noticed that sometime shortly after that one of the bags vanished from the drip stand ( the one I and am now sure was Cipro). On being discharged from the hospital a few days later I suffered an attack of tachy which lasted several hours. As I was still on the Flagyl I thought it was a reaction to that and my GP changed it to Augmentin.
    In August this year my GP gave me a prescription of Cipro for a suspected UTI. Unusually for me I did not read the info in the packet very carefully. I took 1 capsule. Within 2 hours I had a couple of symptoms that I recognised from my stay in hospital – a feeling of pressure behind the eyes and the sensation that my vision was disturbed. I read the info carefully and when I got to the bit about Achilles tendon pain the penny dropped. I did not take any more and the urine tests came back negative. But the pain came back in the Achilles tendon. Not badly and it has since gone. But one week later I was taken to hospital in an ambulance with a very bad attack of tachy. They said I was in atrial fibrillation. They said it was because I was taking too much thyroid meds (as a result of blood tests after I complained to my English doctor about the costchondritis they discovered I was hypothyroid). But I am sure it was because of the Cipro. I have had other symptoms like many of the people here describe but not nearly as severely (so far!) for which I am very thankful. I think part of it might be due to having a good level of vit d as a deficiency of this was discovered in 2007 and I have Calcefediol drops which mean my liver does not have to do the first process in vit d metabolism. My GP thinks it is unlikely that one capsule of Cipro could cause such a severe heart rythm abnormality one week later but he has not read the testimonies on this site!He does recognise that I had a bad reaction to Cipro in the hospital and I suspect he is cross with the consultant not telling me I should avoid it infuture.
    I have tendonitis in my elbows and thighs at the moment and find walking difficult some days but my most stressing problem is the costo. When I first started to suffer from this the pain was mainly in the lower ribs but now it is also in the upper ribs and sternum. Some of my ribs feel as if they have lumps on them like you can get on the Achilles and wrist tendons. Because costo pain can mimic heart pain due to the nerves in the area being similarly affected it is hard not to panic when the pain comes. The afib has not returned and my own cardiologist has taken me off the anticoagulant the hospital prescribed and said I can stop the beta blocker soon. That too makes you feel like death warmed up but I am now on1/8 th of the dose they gave me in the hospital. Do you have any improvement in your rib pain?

    • Bronwen February 20, 2016 at 12:27 pm Reply

      Hello Madge – just thought I’d supply an update (first response below) after a discovery that seems to have helped the costochondritis-type symtoms. Of course it could be a coincidence in timing, too. But, after reading some other Floxie stories, I started taking collagen because not only were my ribs still sometimes sore but my tendons not what they used to be, and my skin less firm. I’m on WithinUS TrueMarine collagen as it is sourced from wild fish, not animals that might have been grown with antibiotics. Anyway – it’s not cheap, but it does seem to have made a difference.

  12. Bronwen December 20, 2015 at 12:02 pm Reply

    Wow. What a story. Your GP is wrong – one cipro pill can cause drastic problems, because it is not the gradual increase of cipro in your system that adds up to gradually increasing symptoms. There is a threshold that you go over suddenly (for those that have the genetic propensity), and once over that threshold, symptoms hit, and as far as I can tell, you never can go back to being able to tolerate drugs that affect the mitochondria/gaba receptors/etc again.

    To answer you question – I definitely have had improvement with rib pain. It happened gradually, but most dramatically about 14 months post-cipro. I still have tenderness/squirmy feeling of being constricted, especially in the evening, when I still occasionally cycle down tog worse symptoms (ever couple of months for a week or so). We are definitely both experiencing the same family of symptoms. I find it is accompanied with upper back pain and erratic “loud” heart beats, and occasionally chest/sternum pain. And yes – it is worrying. And it is hard to figure out what is causing what pain in the chest area. I had an ECG done to make sure my heart was OK a year ago, and it showed a little degradation, but nothing to worrying. From what I understand, if the number of mitochondria in your heart are reduced, then they can’t pump blood through it as efficiently, so you can end off with angina-like symptoms (perhaps what feels like sternum pain?), but these are not caused by the usual causes, so don’t really show up in normal tests. I don’t know whether my slightly dilated left atrium can reduce again or not, but I’ve decided not to worry as long as my symptoms, on the whole, continue to improve. And they do. By the same token, I’m not sure whether the pain is costochondritis or not – this is my closest guess. I’ve also been doing some reading on fibromyalgia as the upper back pain I have is definitely caused by my small muscles being stuck in a contracted mode – a massage therapist has helped, but not completely. I understand that fibromyalgia as well as FQ symptoms can be caused by an imbalance of the sympathetic and parasympathic nerves making ones muscles and other organs find it hard to relax – thus potentially causing the heart’s irregular beats – maybe it is not the inflammation of costochondritis in the ribs but a group of over-tightened intercostal muscles? Who knows? I do know though that magnesium is extremely important in helping the body relax (as well as detox) so my advice to you would be to get some Magnesium Threonate (which goes straight to the mitochondria with the added side effect of helping the brain think better). Google it – there are not many suppliers. It takes a while to build up magnesium in one’s body, and my costochondritis-like symptoms really started getting better about 6 months after I started on this. I’m staying on all the supplements above except liposomal glutathione (good for critical healing, but I’m past that) and instead on the NAC now. I plan on probably staying on most of them, maybe reduced, but long term.

    Best of luck. You have certainly identified symptoms that I found very little information on as well, so happy to share my potential theories and cures.

    • madge hirsch December 25, 2015 at 9:36 am Reply

      Dear Bronwen, thank you for replying. I am now convinced that I was originally floxed many years ago. I had after moving to a large industrial city many bouts of sinusitis and I am sure the GP I had at the time would have given me an antibiotic. I have also had occasional antibiotics for other things but no idea what. The sinusitis I resolve with acupucture but it was shortly after that I started with musculoskeletal problems and they did indeed cycle. But before I retired I danced and taught Bhararanatyam and as a dancer’s life often involves such pain I accepted it as normal. The costo definitely cycled and was always accompanied by two other mysterious symptoms blurry vision on waking and anose blocked up with a dried yellow coating. When my hypothyroidism was diagnosed in 2000 I breathed a sigh of relief and put all my mysterious symptoms down to that. I was helped by the thyroid hormone especially the T3 but I still had some recurrence of the cycles. Now that the docs have blamed my afib on too much T3 and taken it away my tendon pain has come back with a vengeance. The pain in my chest can be reproduced by pressing on it and I have some very tender spots there in places where I have seen trigger points on diagrams. I have been taking Magnesium in chloride form and also having baths. I think the two latest floxings have set me back quite a lot. I will try the mag threonate.
      I came across an interesting website where the person was convinced their thyroid problems were precipitated by being floxed but also their iodine metabolism was involved. Both the attacks of tachy I suffered at home came on after eating dinner. The first one after fish the second after shrimp which is very high in iodine.

    • madge hirsch December 25, 2015 at 2:22 pm Reply

      I forgot to say I get a lot of upper back pain too especially between the shoulder blade and the spine. Often sharp pains which feel like something is tearing-maybe the tendons.

  13. dan December 22, 2015 at 10:06 am Reply

    hello bronwen, started liposomil 3 days ago. i have a doctor around the corner who does ivs meyers, vit c, chelation h202. spoke with gary on his post and said i should start ivs as soon as possible. antioxident iv and glutathione. what are your suggestions? he thinks i had a mild reaction to the levaquin. my neuro symptoms are getting a tad worse before i stared the glutathione. should i stick with this regamin for now or start the ivs? i really want this toxin out!! please help. dan.

    • Bronwen December 22, 2015 at 10:51 am Reply

      Hi Dan: I believe I would go for it! I don’t want to be responsible for your choices, but IV glutathione is the ultimate way to get glutathione boost in your system. Liposomal glutathione works, but gradually. At the critical time when it could have helped me, my naturopath suggested the IVs would be overkill. But I think she was wrong – she did not realize the depth of my damage to come. I would certainly use IV glutathione if I had to do it again and had a practitioner I trusted. Just be aware you may react by having worse symptoms as the toxins leave, but from what I’ve read some people feel amazingly better quickly. I would go for the IVs for sure and then maybe use the liposomal glutathione later, when you’ve finished the IV’s but still want some de-tox support, as the drug damage continues to exit.

  14. Terry December 29, 2015 at 8:29 am Reply

    Bro when, my biggest problem is fatigue. What are your supplement suggestions, amounts and time of day supp’s should be taken.

  15. Bronwen December 29, 2015 at 9:04 pm Reply

    Hi Terry: I had fatigue in the first months, needing to rest regularly, but now I don’t, even though my endurance is not quite what it used to be. However, I did a 10km hike today, so obviously much better. It is hard to tell which supplements helped the most. Every body is different – I’m happy to tell you what helped me.

    DETOX: If the floxing is new and intense, then I’d suggest helping your liver detox the cell destruction in your body and boost the methylation cycle by finding some liposomal glutathione (look for sources on the internet) – I was on this for 6 months, but once you’re getting better, you can go on the gluthione booster of NAC (500mg morning and night).

    SUPPORT MITOCHONDRIA: To support your mitochondria, I’d take D-ribose (2gr morning and night), L-carnitine OR Acetyl L-carnitine (500 mg morning and night), plus mitoQ (10mg morning – expensive, so I actually take only 5mg)

    MAGNESIUM: Take magnesium! It helps! Find some Magnesium Threonate (Life Extension puts it out as NeuroMag – I take them just in the morning as it stimulates the brain – the dose is 3 pills a day totally 2000mg, but I just take one or two as I take other magnesium as well) Other good magnesium choices are Magnesium malate (helps with fibromyalgia-like symtoms, magnesium orotate – helps heart, or magnesium bisglycinate). Mag Threonate won’t give you the runs, but If you’re finding the others do, then it probably means your body is having a hard time absorbing it – often an issue when you’re very low – and transdermal magnesium oil is an option I used for a while)

    B VITAMINS: I’d also take B vitamins in the most absorbable format possible – methylated folate and B12, because there is a good chance those of us that react to FQs don’t deal with B vitamins properly (that are essential for our energy-genrating methylation cycle) so we need them replenished desperately. The best suppliers I have found are Thorne Stress B (only via a naturopath in Canada) or AOR Advanced B Complex (can be bought online) – morning and night as the bottles suggest

    In addition, Omega 3, Vitamin C, Vitamin D.

    If you have to choose just a few things – I’d take Magnesium Threonate, Acetyl-L-Carnitine, AOR Advanced B Complex, and if you can afford it, MitoQ.

    Best of luck,
    Bronwen

  16. Mark S January 12, 2016 at 12:11 pm Reply

    Not sure if it’s a coincidence or not but I took liposomal gluathione last night and today I have symptoms of a cold and I can feel my heart beating a little faster. Do you think they are connected?

    • Bronwen January 12, 2016 at 1:10 pm Reply

      There is a good chance they are connected. As the glutathione starts to help release toxins from your body, the body reacts to the “loose” toxins as they make their way out of the body. This triggers immune responses such as a cold, or even the same symptoms you had as the damage started taking place – its actually called a herxheimer reaction. If it gets too much, cut back on the glutathione dose and up it gradually over a few days – this is what I did. It can be confusing because you can’t tell if it is helping or not, particularly as it might be stimulating the same symptoms, but give it 2 weeks to clear the toxins before you decide.

      • Mark S January 12, 2016 at 1:29 pm Reply

        After researching it a bit more, it definitely seems to be the beginning of a herxheimer reaction. Got a sore throat out of nowhere as well. I actually am excited about this now because it shows the glutathione is having some sort of effect of detoxification.

        • Mark S January 12, 2016 at 1:36 pm

          Also, I just received my three pack of MitoQ in the mail! Perhaps this will lessen the chances of a worse reaction as the antioxidant will clean up these toxins being freed up.

  17. dan January 19, 2016 at 8:36 am Reply

    dear bronwen,recieved my cell test yesterday and i am low in glutamine. borderline ala, coq-10, vit b12, calcium, l-serine, vit-e and gluthione. had an gluthione injection done but backed off at 750mg doc wanted to give me 1400mg i got scared. after that had elbow pain all night and buzzing ih my finger. mag, vit-k, c, folate, fatty acids,choline, other vit b-levels all normal as are glucose,and selenium. any thoughts are welcomed. still have pins and needles along with the spasms. thanks dan.

  18. Bronwen January 19, 2016 at 8:49 pm Reply

    Hi Dan: I feel like I’m not an expert enough to really provide any additional insight here beyond what I’ve shared before. All I can really do is talk about what worked for me and what I’ve read about. I expect you’re reading other people’s stories too and seeing what symptoms they have that match your own and what they’ve done as well.

    I’m sure you’ll supplement for anything the cell test identifies. Maybe go at the liposomal glutathione slowly – I think you said you got some – building it up from a partial dose. It is normal to react as toxins dislodge and the immune system reacts with the same symptoms (Herxheimer reaction). I also find there is a very strong cycle of good and bad days which makes it hard to know for sure when one is getting better, but month by month, you can recognize improvement. It takes time. I also think (as do many others who have written their stories on this sight that magnesium (recommending mag threonate) and CoQ10 (in the form of MitoQ – although this is expensive) and quality B vitamins as listed above (all of them including B12 and folate in methylated forms – they work together) are really important. Acetyl-L-Carnitine might be good too. Also believe that your body is trying to heal – it is trying real hard and feed it the best diet you can. I know it is hard, but you will eventually look back on this from a place of better health.

  19. melindahemmelgarn February 20, 2016 at 2:12 am Reply

    I am newly “floxed” (Cipro) for a bladder infection, and now feeling depressed about an unknown future, and overwhelmed re figuring out which supplements might be helpful. I’m taking magnesium — CALM — stir one tsp. of powder into yogurt each morning, plus vitamin E to try to prevent tendon damage, vitamin C, and probiotics – Florajen. I have a tendon injury post weight lifting on day 4 — after I stopped the prescription (5 days, 500 mg twice per day) I had no symptoms while taking it, but 4 days later, I sustained the hand injury. Then neuropathy — burning and tingling in my fingers, toes, feet, and joint pain in my elbows. These symptoms are intermittent.
    It sounds like I need something for mitochondrial repair beyond magnesium. But I don’t want to throw too many supplements at my body at once.
    Also, when I went to bed tonight I started shaking; had to get up and decided to go on line to read more. My hands were shaking so much I could hardly type. But now things seem to have calmed down. I wonder if it is related to the fact that I tried to swim today — one mile. I hate being inactive. I used to be so active and strong.
    Thank you Bronwen for your excellent write up. I’ll try to research the info at your links. I wonder how long this is going to happen. I’m supposed to travel to Cuba next month.

  20. Bronwen February 20, 2016 at 12:20 pm Reply

    Hi Melinda: I’m glad you reached out. It is hard to be unsure of what is going to happen to your body next and what to do, and certainly, those of us that have gone through this bewildering attack on their body can support and understand better than those that haven’t. Big digital hug. I’m sorry you’re going through this. You ask how long this is going to to happen…To be realistic, it is likely you will continue to get worse before you get better. I got worse to about 4 months, before a very gradual turn around, based on supplements I found to fill gaps in my body and just simply, time. Now at nearly 2 years, I’m not quite where I was but very close – I have some heart symptoms, but probably because I did not have an optimal heart to start off with. Even if very healthy and active all my life, I am also 55 so had I been younger, I expect I’d be completely better. I wish I’d know a few things I ended off doing a few months earlier and I wonder what would have been my journey if I started them earlier. So, I want to share with you what I would have told myself then…

    Every body is different and therefore will react differently to what seems to an imposed chemical deficientcy in your body. This depends on what reserves you had to begin with and my thinking is (also coinciding with some of what the Floxie Hope host has written recently) that we are likely to have certain genetic traits which can be defined (in some circles) as not being able to metabolize specific pieces of chemistry our body needs to operate well. Mostly, we don’t see these tendencies surface, as we eat well and make up the shortfalls. Then along comes Cipro, robs us of things like magnesium, folate, glutathione. As explained to me by an alternative pharmacist, our bodies are driven to survive, so modify some chemical reactions to use what is left, but much less efficiently, which produces deficit side effects, cells that die from inadequacy, and a resulting toxic build up. These manifest as varies symptoms depending on what body we started with. For me it affected my heart and tendons more than nerves, but for others it is more brain and nerves. In particular, this is true of the methylation cycle which drives the energy we need for every organ, and mitochondria. However, supplementing with the right substance (not a “medication” but increasing something the body already contains), can minimize the traits. All this to say – don’t be overly worried about throwing some supplements at your body quickly (like NOW!) – 1) you need to fill some deficits as fast as you can. And then, 2) and this is when you need to be more careful, you need to remove the toxic build up of chemical reactions gone wrong.

    So, back to the top 3 things to fill deficits. A)Get hold of Magnesium Threonate – it is the only magnesium that passes right through into the brain/mitochondria. I also supplemented with magnesium oil – as a way to get it right into you fast B)If you can afford it, take the plunge and order MitoQ from New Zealand – again it targets the mitochondria as a super efficient – like 800X more than CoQ10. Personally, I wouldn’t hesitate. Vitamin E and C and Omega 3 (EPA being the important peice) are all fine, but you need something more powerful. C) Take Acetyl-L-Carnitine or L-Carnitine. The acetyl part again goes into the brain/mitochondria well, so it might be best, the non-acetyl is more muscle based.

    OTher good things – D-ribose can make a real difference if you’re exhausted. It is the final “energy” product the mitochondria are struggling to make. Take methylated folate and methylated B12 – see my article above for sources – this may fill the chemical gap that caused the problem to start off with. Recently I discovered collegen – my tendons still seemed less strong and I continued to have pains around my ribs so started taking TruMarine collegen (from wild fish – no antibiotics) and have found it makes my muscles/tendons/joints feel normal so this might be a really good things to do too – certainly seems to make sense. The collegen in the tendons breaks down, so this would help build them up again.

    So, for detoxing your body – if it is not yet too compromised, NAC can be good – it is a building block to help the body produce glutathione. Mine was too far gone by the time I tried it, so had to use glutathione itself. Carefully. I have written a whole bunch on glutathione and going at it carefully – see my couple of responses to Dan – so won’t repeat that here. Meanwhile, whey protein in smoothies (I use Progressive Harmonized Protein because it is antibiotic free) can’t hurt – it contains building blocks for glutathione too.

    I can see from the picture beside your post that you know all about the best diet possible. I moved towards a hunter/gatherer diet as much as I could, even eating red meat again, and only enough carbohydrate to stop me from losing weight.

    Gosh – I do hope I’ve helped. Best of luck and know your body is wise and trying its best to heal – it just needs some major help right now. Do not push yourself too hard – I pushed too hard and I learned not too. A good life lesson. Keep active, but each day is not the same. Listen carefully to when your body says enough. Be gentle on yourself – I finally learned how to stop and dwell in the beauty of the moment.

  21. Nicole Reedy March 26, 2016 at 10:18 am Reply

    Hello Bronwen, I do not know if you still go on this site but would very much like to connect with you. My name is Nicole & I am new to this site. My story is on Lisa,s recovery page.
    I also live in BC & I am 65. I took my first Cipro on Feb.7th for diverticulitis and passed out within 20 minutes from upper right chest pain that was going into my back. my husband call a ambulance because I already have heart rhythm problems from a past undetected small heart attack. They let me lay in the hall of our local hospital for four hours without even a nurse talking to me. When I finally saw a doctor he did not even read the parmedics notes and said the pill probably upset my stomach & changed it to Avelox because of only having to take one dose a day & gave me a dose of it on top of just having the Cipro 5 hours before & more morphine. I was so out of it i could not fight him. The next morning my eyes were very yellow & I had very dark urine. I was so nuts & tried to tell my husband something is wrong but he does not do well with illness & said you have been to the hospital just go back to bed & rest. I did go back to bed & was so nuts slept until late afternoon then the sickness hit & i was in the bathroom all night. The next morning my eyes had cleared but was just so sick I made him just drop me off at our larger city hospital (VGH) and my girl friend came over to sit with me. Needless to say I was still so out of it I could not relay the story to the dr there but she had run my blood work and my liver enzymes were off the wall! The student who was working with her was asking me all about my drinking. Like you I did find I enjoyed a glass of wine in the afternoon but that was it. I told him that I just had a blood test & they where normal. he just looked at me and said no drinking or tylenol but stay on the Avelox & have my blood tested every few days to check on enzymes. I did not think to tell them about the event of the Cipro & yellow eyes. My friend took me to my dr for my paper to get blood testing & he told me I had a attack of acute hepatitis maybe from the Cipro. ( by the way I had Cipro once before but no reaction like that. Did get C-diff from it and maybe a bit of leg pain & depression that I did not connect at the time) I said I would never take it again & had said no many times for UTIs but was lead to believe I had no choice with the diverticulitis. So stayed nuts for the 10 days on Avelox but pulled myself together enough to take a taxi to have my blood tested every few days and was going down so my dr said finish the Avelox because it did not cause it so stupid me finished the 10 days. I had problems with my thinking but I started driving again maybe a week after I finished the last pill. Tried to go walk the seawall every few days but 10 mins was about all I could do. I spend Friday’s with my 2 year old grandson and being with him has been very hard on my body but good on my heart. Last weekend was 6 weeks since first dose of cipro & Avelox and I felt like maybe I was feeling a bit better and thinking a little clearer. Then boommm! Pain started in Jaw then right shoulder & back. had crying spells & such depression! Saw my dr and he did confirm tendonitis in the shoulder said it did not have to be a reaction to the pill. That was last monday and since then it has move to left shoulder and leg pain and every join in my body started popping last night. I told my husband I was really getting worried & he thinks I am having all these side affects because I have read them. Not true! I had not remembered anyone having popping until I went back on this site & reread a few stories. After reading yours I must say I am a bit stressed over the heart thing though because I already have a heart problem! I have made a appointment with a naturopath for next week. Was happy to see your post on the Mag. you take as it does give me diarrhea. Anyway after this long story I just hoped we could connect.
    I do not know where you live in BC but it does not seem that the Canadian pharmacist believe this is happening to me?! Like you I really have to do it on my own as my husband also has no believe in this. I want so much to spend time with my grandchildren age 2 & 6 months but now afraid it is not going to be possible. Sadly because of the liver problem I can not have that relaxing glass of wine! If you do not read these anymore maybe if you see it, Lisa you can forward my email address to Bronwen.
    Thanks everyone that helps & listens here in scary land!
    Hugs & more hugs, Nicole

  22. Bronwen March 28, 2016 at 12:13 pm Reply

    Hi Nicole:
    I’m really sorry you are going through this. I know it is both scary and debilitating. I also know that the body has a capacity to heal. I am now just about all better – 2 years later.

    The first thing to do is to arm yourself with something to show doctors that proves the fluouroquinolone drugs are doing the damage to your brain, your liver, your tendons. Avelox and Cipro are both fluoroquinolones.You need to be taken seriously by them so print out proof and take it to every appointment. Here is a letter from one doctor to another, complete with studies: http://www.myquinstory.info/wp-content/uploads/2010/01/Dear_Colleague_Letter_Aug_2015Fn.pdf. Here is a summary of the recent FDA recommendation to change labelling: http://www.lexology.com/library/detail.aspx?g=39661901-c7c5-4d46-a704-e2a871691139.

    I no longer live in BC, but in the Yukon, where access to medical providers is very difficult. I wish I could recommend a specific person in BC to talk to but I can not. I had to take my healing into my own hands and then checked in with a couple of naturopaths about my approach. Two doctors believed me but also wisely said they did not know how to help me.

    I am no doctor and any recommendations I make come from my own experience, not an understanding of your body. However, I believe the liver issues have nothing at all to do with alcohol. Yes – alcohol can reduce glutathione (our master antioxidant) in the liver, but I’m pretty sure the reason your enzymes are out of whack, is that the liver is completely overloaded trying to manage the oxidative stress (garbage collection) from your cells collapsing due to the mitochondria not being able to produce the energy required to enable adequate organ operation nor cell replication.

    As far as I can tell, fluoroquinolones temporarily rob our body of certain chemicals we need to manage basic organ functions by enabling the energy they need with the methylation cycle. THis probably includes pulling away things like magnesium, folate, B12 and glutathione. Most people have enough stores of these and so quickly replace what is missing. Some of us, probably because of genetic tendencies, can not replace these pieces of chemistry, so things literally start falling apart, and the liver is left trying to remove all the broken pieces and can not keep up. So, you need to feed your body the missing pieces of chemistry so functions can gradually return to normal and then also give the liver some help. Please see the message I wrote to Melinda (2 above) for a break down of my highest recommendations. Basically, I would dive in and spend money now rather than waiting on: MitoQ, magnesium threonate, D-ribose, Acetyl-L-carnitine. I’d also strongly recommend the Probiotics, and AOR advanced B complex (as a source of methylated Folate and methylated B12) For the liver, you probably need liposomal glutathione – there are a number available on the web, unless your naturopath recommends glutathione IV, which has certainly helped many. Go at glutathione carefully – as I’ve noted in answers to others above – as the body starts being able to move toxins from dying cells out, it also increases the toxins in your blood so you can react to this, so slow and steady is the rule.

    On top of this is the fact that fluoroquinolones also attach the GABA A receptors, which I do not understand completely, other than they monopolize our nerve function, which also includes the brain so feelings of anxiety, depression, craziness and inability to perform normal brain functions occurs. For me, this was less of an issue than for some so I have researched it less. As far as I can understand it means our body’s nerves are on overdrive, with the capacity to relax compromised. However, I am totally out of my depth here.

    As far as the heart goes, I believe my heart was in very rough shape initially because the mitochondria could not work and therefore my cells in my heart could not create the energy required to make my heart keep up. I gradually fixed this with the supplements listed above, and now think my arrhythmia is being helped very much by acupuncture.

    I do hope I’ve helped. All I can say, is you have to manage your own healing. This is a subject where nobody knows everything, and because every body reacts a little differently it is confusing to even the most enlightened practitioner. It is great you’re reaching out to others who went through the same thing. Wishing you strength and healing.

    Bronwen

    • Nicole March 29, 2016 at 11:48 am Reply

      Good morning Bronwen,
      I so appreciate your response. This site has given me so much great information. I realize now with my research that if the ER doctor had realized the first dose of Cirpo had caused immediate acute Hepatitis & treated it in the same way as you would a patient with Tylenol overdose we may not be having this conversation.
      They are treated with a IV of NAC! Interesting, yes? Instead I had the Dr brainless just feel me with morphine & 10 more days of Moxifloxacin.
      I also down loaded a book yesterday morning by Dr. Jay S. Cohen called How we can halt the Cipro & Levaquin catastrophe. Very informative! So much on the loss of magnesium. I understand that the Mayo Clinc is now suggesting a protocol of magnesium given to patients along with these drugs ( a different time of day) may help avoid these horrible side affects in some at least.
      I am on week 8 now from first deadly dose & like you I seem to run through different symtoms in a 6 to 10day span. I knew my brain fog was due to the pills because when I had Cipro for a UTI about 8 years ago I felt crazy. I did know it caused my C-Diff but now think it has caused a lot more that I realized. I have had leg pain & some body pain since but thought it was just age along with panic attacks which have been treated with Benzos & Hypnotherapy. I seem to react badly to most meds & have had very bad reactions to statins that they say will go away when they are stopped. Not completely true.
      So unlike most of you I am not going into this from a heathy state but because of all the crazy things that drugs have done to me before I knew to hit it running! I have told you the vitamins I started right away. I added a few more yesterday & talked to the vitamin lady at whole foods about the others you gave me. We added a couple & she said she thought I should wait until I see the Naturopath tomorrow before we add all. I am ordering the Mag. you suggested because I am senitive to mag. as well.
      I have not had a bath in over 4 years for fear of a UTI & Epsom salt baths have even caused diarrhea. Gave in and took one yesterday. I do think it did some shift in me & was detoxing me a bit because I ran a low grade fever the rest of the day but felt well enough to take a short walk for about 15 minutes.
      I am hopeful that my realization so quickly will help me feel at least well enough to spend time with grand children & get through daily duties soon. I do understand there will be sit backs as seems to happen with many. I feel so many Floxies have spent months & maybe years looking for answers from drs who were in denial of the side affects that crucial time was lost when they needed treatment.
      My pain has now moved from jaw, neck, arms more into my hips & legs.
      I do still have some pain in my neck & arms but like you my right arm is the tendon I need to baby. Standing has become difficult but realize this two will pass. The typing does hurt my hands & makes me tired so I am going to close for now. I thank you for the letter to the doctors & I am taking one to the Naturopath as well as she probably has not treated a Floxie before. Only important she knows how to treat the symtoms but not aggressively.
      Hopefully as some of heal we can give back by educating & informing the medical system & stop this drug from being given out like Candy.
      When I was having a conversation with one of my cardiologist about the long term affect some of the meds I have been given have caused me he just said, yes we always think we have found the greatest medicine or procedure & years down the road, oops!!!!
      Well this is a big oops that needs to be stopped!!!
      Blessings & hope to all Floxies!
      Thanks again, Bronwen!
      Nicole

  23. Nicole April 3, 2016 at 1:27 pm Reply

    Hello Bronwen, just a fast update. I have started most all of your program with my Natropath.
    The exception at the moment is MitoQ. She did not know what it was & after reading Ruth’s post I thought I would wait on this one for now. We are going to do the IV vits with glutathione but doing it as a push with small doses first to see how my body handles it. We started a treatment called Bowen instead of acupuncture since I am senitive to the needles.
    Very interesting! Found I was in a bit of depression this weekend but that was after finding myself on the forums again. I know this is not good for me so will stay off from now on except for returning information that I found from you & Ruth on the site & thank God for Lisa.
    Will update sometime later & thank you so much!
    Cheers from the old gal of this site, Nicole

  24. Bronwen April 3, 2016 at 1:58 pm Reply

    So glad you have a naturopath who can lead you through a healing regime.in your earlier post you mentioned vgh, which is the acronym used for Vancouver general and Victoria general hospitals. Are you by any chance in Victoria?

  25. Nicole April 3, 2016 at 3:23 pm Reply

    I am in beautiful Vancouver!

  26. Donna May 14, 2016 at 9:39 pm Reply

    Hi Bronwen, I am interested in the internal vibrations that you say you had. Did these go away? I have been on many rounds of antibiotics and after 3 surgeries in a year and a half in 2012 I ended up in the ER with atrial fibulation. Ever since then I have had this internal vibration even if I am not in afib at the time. It is constant. It is making me very scared and sad. Do you know what it is and how to heal it? I would love to get off of the calcium channel blocker and high blood pressure meds that they had to put me on because of the afib. I know in my “heart” that is is from the antibiotics,
    Thank you! Donna

    • Bronwen May 15, 2016 at 11:01 am Reply

      Hi Donna: Yes, my internal vibrations went away. I don’t know what caused them, although I suspect it may have been very low magnesium (the relaxing agent in the body that also helps with arrythmia and high blood pressure), or seeing cipro blocks the gaba A receptors, an overstimulated nervous system. But I’m out of my depth here. Calcium, magnesium, potassium (and maybe others) all work in synergy to make the heart beat, among other things. If you’re on calcium channel blockers, I am sure this is affecting this chemistry, and have no expertise in knowing how this works. I’m curious about the magnesium connection, however. I expect the excellent reference would be a pharmacist who also supports alternative solutions – these people understand body chemistry, which is what it is all about! Maybe there is one near where you live? I’m in Canada, and found a lovely fellow in a little combo health supplement store and pharmacy who understood the mechanisms of antibiotics as well as realizing that my methylation cycle was broken, and provided not only guidance but supplements to help. Online, there is Suzy Cohen, who writes articles on all kinds of health issues, and I’ve learned to trust. You’re obviously interested in researching your situation, or you would not have asked me my advice. I’d encourage you to research further and wish you healing…

    • Bronwen May 15, 2016 at 11:14 am Reply

      Thanks Aidan. There are many diseases that once triggered, seem to result in a similar set of body mechanisms being compromised. I’m sure genetic factors play a big part in susceptibility. I’m going for genetic counselling (I’m in Canada) in the fall, and will discuss the EDS as one of a number of genetic ideas that have come forward. There is also MTHFR and magnesium (T2DM).

    • Bronwen May 15, 2016 at 11:15 am Reply

      Hi Donna: You might want to check out this interesting article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455821/

    • Nicole Reedy May 15, 2016 at 11:59 am Reply

      Donna, I would just like to add to Bronwen’s comment that I already had a heart rhythm problem before my Floxing but I just saw my cardiologist last week & the mag. had made such a difference I am down to a fourth of a beta block pill a day. She was well aware of what these antibotics cause to the heart & said she would never give them to anyone. So she was expecting the worse & found the best she assumes because of the mag.!
      Also for all of you that find mag. l-threonate keeps you from sleeping my chemist ( I am in Canada as well ) put me on mag. Bisglycinate at night ( which also crosses the blood brain barrier ) and I sleep like a baby!

  27. Aidan Walsh May 15, 2016 at 4:46 am Reply

    I am not saying that EDS is being floxied what I am trying to say is there are people who have the Genetic trait Born with EDS who live full normal lives but something else such as these Antibiotics trip it off that is what I am trying to say so I do not mean at all that EDS is as cause because I believe EDS is more than people are being told today I have spoken to countless who now have diagnosis of EDS but they also tell me they got Sick the day they took these Antibiotics same as people now with a diagnosis of MS are saying the same thing…I believe very much these Antibiotics are no doubts causing serious illnesses & EDS is not only caused by a defect in genes or Collagen issues it is also clear beyond any doubts that these Antibiotics do cause connective tissue disorders & is involved in numerous illnesses I have also read numerous reports even Johns Hopkins like others diagnose Antibiotics Toxicity in patients…As far as so called Lyme disease goes the majority do not have Lyme they have activated antibodies they to have been poisoned by these Antibiotics & most likely the Gulf War Illness Vets as well they were given Cipro but of course the Penatgon to this day is in complete denial…

    • Bronwen May 15, 2016 at 11:16 am Reply

      Thanks Aidan. There are many diseases that once triggered, seem to result in a similar set of body mechanisms being compromised. I’m sure genetic factors play a big part in susceptibility. I’m going for genetic counselling (I’m in Canada) in the fall, and will discuss the EDS as one of a number of genetic ideas that have come forward. There is also MTHFR and magnesium (T2DM).

  28. Aidan Walsh May 18, 2016 at 12:45 am Reply

    Interesting Google search: Has Levaquin Ruined Your Life? Patient underwent a Skin Punch Biopsy @ Johns Hopkins result: ‘unusual axonal nerve swelling & tears’ was then

    diagnosed with ‘Levaquin Induced Toxicity’ I found this on sense.com by Mary Sparrowdancer 5-4-2012 http://www.sense.com/general95/levaquin-dangers not sure if link will work or not…

  29. KK June 19, 2016 at 11:01 am Reply

    Thank you so much for your dedication in putting this site together and for documenting your painful journey. I was floxed almost two years ago and am finally feeling better. I found natural glutathione from eating avocados helped and using avocado oil as a moisturizer. My symptoms have changed so much over the past two years, sometimes exercise will induce the floxing again and sometimes different foods. I have however recently discovered a treatment that I feel has made the most significant impact for me. It is called TBM or Total Body Modification. If you can find a naturopath in your area that performs this treatment it is worth every penny. It is non-invasive and does not require anything being ingested or put onto or into your body. It is purely healing through energy. After one treatment I am 75% better! I wish I had known this sooner, but am so glad I stumbled upon it.

    • Bronwen June 23, 2016 at 7:20 am Reply

      Hi KK. Interesting. I’d never heard of TBM, but looked it up. Balancing all the body’s nervous systems makes sense. I’m glad it helped you.

  30. Genevieve July 1, 2016 at 5:20 pm Reply

    Hi Bronwen,

    I am so happy to have read your post. I’m also in my 50s and doing a lot of research, having figured out pretty fast that the docs were to be of no help for this whatsoever. I have a very kind Chinese herbal/acupuncturist to help guide me with supplements, and she’s willing to learn along with me and do her best to help.

    My symptoms are everywhere, including my heart. I’ve noted the supplements you recommend to ask the herbalist about when I see her this coming week. I know this is very individual and somewhat trial and error. The research I’ve been doing has led me into some very distinctive areas, such as autism (I think I probably have a MTHFR gene mutation at least from my father’s side, he had a kind of autism we think) and in that reading I’ve seen that L-Glutamine is often said to be best avoided if you have brain issues, which I do. I stopped taking the L-Glutamine supplement the herbalist gave me after 3 weeks, it didn’t seem to agree with me, and what I read made me wonder if it was making me worse.
    I have a little disagreement with the herbalist here, in that when I mentioned this, she said L-Glutamine is not the problem, it is Glutamate that is the problem. But what I’ve been reading (and it’s so specific I don’t blame her for not having read these things and luckily she’s great and not pushy) suggests that it can convert to glutamate in the brain and so it should be avoided by some people. I want the benefits of it, but not if it’s harmful. By one account it is harmful to about 5% of people, which could very well be me. Do you have any knowledge or opinion on this?

    I really can’t tell you how glad I am to have read your post. I was floxed last October but didn’t put my galloping symptoms together with the Cipro (for a now-cliche suspected UTI infection) I just thought it was everything else under the sun, and then I was refloxed recently and went googling, the usual story, and realized what it all is. Thank you so much for everything you’ve shared here. Any opinions you’d have on the L-Glutamine would be very much appreciated.

  31. Bronwen July 1, 2016 at 8:03 pm Reply

    Hi Genevieve: I don’t really know much about l-glutamine. This is one area I did not research too much. However, it seems it is one of the amino acids that make glutathione, so my question is if Glutamine is questionable for you, why not go straight for glutathione (liposomal or – I haven’t any experience with this, but was reading about it recently – acetyl glutathione)? See Suzy Cohen’s article at: http://suzycohen.com/articles/glutathione-the-new-drug-target/ I’ve learned to really trust what Suzy writes. Now – two years later, and not having taken liposomal glutathione for over a year, I still take NAC, another of the amino acid building blocks. I’ve written above in answer to a few people about when detoxing the garbage which has built up from broken systems in your body, can mimic the original symptoms and so it is important to take it slow. See the 6th comment in the list above – my response to Dan.

    More recently I have found the absolute importance of magnesium. If there is anything I would recommend to people with heart issues this is it. I knew it was essential when I wrote the article at the top, but did not know how much was necessary to reverse it being removed by the cipro/levaquin – which chelates magnesium in your body as part of the way it kills bacteria. – over the last 6 months this has become the magic solution for me – I’m still taking magnesium threonate, but also as much magnesium malate as my body will tolerate (totaling now about 600 mg elemental a day). This has made a huge difference to my heart which is why I’m making special mention of it to you as you may find it does to yours. Here is the oversimplified explanation – calcium makes the heart contract, and magnesium makes it relax and therefore it stopped most of my arrhythmia which was the heart getting too jumpy. It is so important to hearts, that they give heart attack victims an IV of magnesium in the hospital and I’ve even heard that supplemental magnesium would prevent most heart attacks. I started with mag bisglycinate and that was not working well, so I moved to mag oil – just to bypass the digestion system altogether and get the mag in somehow, and went on mag threonate (easy on digestion) and a little mag malate. I also take epsom salt baths on the day I feel less strong. I figure I may have to keep at a high level for a few more months before I can rebuild my stores as right now, the days I don’t have enough mag, some of my weird little symptoms come back, like chest tightness, sore ribs, sore upper back, more arrhythmia. I don’t know if you were on calcium supplements before being floxed, but I’ve also found out that calcium attaches to magnesium in your system and takes it out your kidneys. I’d been on huge amounts of calcium to counteract osteoporosis. Apparently most people get enough calcium in their diet. It is the magnesium which is missing – also the solution for osteoporosis. I don’t take anything the medical profession says now for granted! I research everything. The last thing to note about magnesium is only 1% is in your blood so there is no point in a mag blood test. Your body will deplete everywhere else to keep it in your blood, as this is essential for life.

    Another thing that helped me in the last 6 months has been collagen. I’ve made sure it is from wild fish – some is from farm animals that may have been fed antibiotics. I’m sure you’re on methylated folate and methylated B12.

    I wish you healing. It will get better and you’re doing absolutely the right thing to ask questions of these who have had similar symptoms and also working with and questioning a alternative health practitioner you trust.

  32. Genevieve July 2, 2016 at 12:25 pm Reply

    Thank you for this, Bronwen. It’s so much to learn, especially all the different forms of each supplement there seem to be. I also get very sore ribs at times, they can feel brittle as if they’re about to snap. May I ask, when you said you would have one alcoholic beverage, what did you have? Before I knew I was floxed, I would sometimes have a glass of beer or wine, and it didn’t seem to cause too much trouble. Right now I’m staying away from it, but I’m curious as to what you did have (as mentioned in your food and booze paragraph) 🙂

  33. Bronwen July 2, 2016 at 4:49 pm Reply

    Genevieve: I had dark beer only because it is my favourite but apparently quite healthy too. I just needed it to dull the pain and worry a bit but never had more than one or very occasionally two drinks. By the way, one of the symptoms that hung on for me, still resurfacing on occasion this spring was the rib sensitivity and general ache in the chest and upper back tighteness. It felt awful to have a bra pulling on the chest. This was redone I kept plugging at research this last spring and fortunately seems to have diminished a whole bunch with the collegen and mag, as I mentioned in my first response to you. I believe the cipro has deeply affected connective tissue and it just gradually needs to rebuild once given the correct chemistry components.

  34. Genevieve July 2, 2016 at 5:46 pm Reply

    Thank you, Bronwen. Dark beer is my favorite as well, so eventually I may risk trying one but at the moment I’m wary of the consequences, being newly floxed. I went to the vitamin store this evening to look for threonate magnesium but they didn’t have it. Is it something that is hard to find? I have disconcerting vision/eye issues thanks to the FQs, and I’m wondering if collagen might not be good for that too. Thanks again so much for your generous advice, it is so helpful.

    PS–Off subject, I know, but do you see many moose where you are in the Yukon? I love seeing moose in the wild.

  35. melindahemmelgarn July 2, 2016 at 7:56 pm Reply

    I recommend magnesium citrate in CALM — it’s a powder you mix into beverages — I mixed mine into herbal tea. I also bought “magnesium oil” — it comes in a pump spray bottle and I put it on my elbows, shoulders, arm muscles — anywhere that hurts. I think it helps enormously. It does tingle a bit when you put it on, but try it.
    I also will have an occasional small glass of red wine and find alcohol to be a great pain reliever/relaxant.

  36. Bronwen July 2, 2016 at 9:19 pm Reply

    Thanks Melinda. Yes – I’ve heard lots of people like the mag citrate CALM. I think mag oil is really great way to get mag into yourself, bypassing the gut altogether. The irony is that when we need magnesium the most, sometimes we can’t absorb it properly and that’s where the mag oil is fantastic.

  37. Bronwen July 2, 2016 at 9:33 pm Reply

    Hi Genevieve: Magnesium threonate is hard to find – in some health food stores but not others. It’s only be around for a couple of years, but is getting more and more great press. It seems to be very helpful for people with nerve and brain issues (e.g. alzheimer’s) but the real great thing is that it is the only mag that enters the mitochondria efficiently. Read Ruth’s story on this site for more info – that’s what got me onto it. Life Extension puts it out as Neuro-mag. Look it up on amazon. Note the elemental magnesium is the part that counts.

    Just another thing I thought I’d share with you because you are experiencing heart symptoms like I did – when I first started taking mag oil and epsom salt baths (early on) my heart reacted by racing afterwards for a short while. This scared me, but what I didn’t realize then and do now, is that when the mag is working, it allows the calcium to come out of where it has been replacing the magnesium (they are supposed to slide in and out of the cell replacing one another for different functions, but when there is not enough mag, the calcium stays in the cells and keeps them in an overactive state), and so for a short while there is MORE calcium in the blood and your body can react temporarily. It seems backwards, but it means you need the mag desperately. The trick is to stay calm and drink a bunch of water and it goes away in about half an hour. Both mag and calcium are water soluble. It’s not likely to happen to you, but I just wanted to let you know about the possibility. It only happened twice to me.

    As far as moose go – there are apparently twice as many moose as people in the Yukon, but I’ve only lived here 11 months and have yet to run into one!!

  38. Genevieve July 3, 2016 at 8:29 am Reply

    Here’s another question, Bronwen. Yesterday I re-started on NAC with one pill, which I’d stopped along with MSM and L-Glut because of herxing,( leaving only the magnesium and some vitamins). Last night I felt positvely re-floxed, pain all over, heart racing, etc. I have tendon and joint pains (and knee popping and pain that makes me limp) and I’ve noticed all along since before I knew I’d been floxed, that my skin is easily imprinted with whatever I sit or lie on, so I’m still trying to figure out what might be good for the overall connective tissues/fascia/joint pain etc. So my question is regarding herxing. The jury seems to be out on whether it is good or bad. You pushed through the herxing with the NAC, etc, did you not? I’m torn between cutting everything out that may cause herxing and toughing it out. I get worried about the theory that herxing can actually cause more harm to the brain, and I have definite brain issues from this. So I wonder, how did you decide to tough it out, and did you do anything in particular to help counteract the effects?

    The symptoms last night were very intense, including raging neuropathy, worse eye problems, pretty much everything. I dealt with it by reading a pulp novel with one hand on my purring kitty cat 🙂 I’m avoiding L-glutamine powder, but I did have a nice big beet yesterday, so it could be sourced from that, or it could be the NAC and MSM tablets I took yesterday, or just a cycle. Luckily I’ve learned that what felt like impending heart attacks didn’t kill me (although I had nights were I unlocked the door, took an aspirin and sat up with the phone in my lap) and at least now I know the reason. Thanks to some of what you’ve written and told me I feel less anxious about the heart thing, which is very good for it/me. So thank you.

    Meanwhile, I hope that you will see a huge moose very soon. I used to see them in Montana quite often as a kid, and every year at least one moose would end up wandering into the grocery store. I live in New York now and I miss moose the most.

    • Bronwen July 3, 2016 at 7:59 pm Reply

      Hi again Genevieve: You’ve asked some great questions and I’m sorry you are suffering. It is very hard and bumpy road, but I want to tell you that you will improve. Your body just needs lots of time and the right bits of chemistry. I could barely walk 100m two year ago and today I walked 15km and many of them uphill.

      I wish the answers were obvious. I remember reading the words of someone who had been floxed saying that they welcomed the worse cycles because they new this was when toxins were running through the body to on their way out. I know this has some truth but I don’t know if it is only this simple. I connected at one point with a pharmacist who had elected to primarily support supplementation instead of medication and so had amazing knowledge of both worlds. When I found that NAC made no difference to me, he said it was because my methylation cycle was completely broken because one of the pieces of chemistry needed for it was missing and I would therefore need to straight to glutathione. He explained that in the body’s drive to survive it will elect to use secondary and much less efficient chemical reactions to get the job done so we can keep living. A commonly understood one is when you people push their endurance hard, they go from aerobic use of oxygen to anaerobic. Well, if the body is limping along in this less efficient way, it has a shock when the correct chemistry materializes because it has to change it’s methods of operation. So I think there is a lot going on with these cycles which also includes the herx, the body grasping at new ways of surviving and every time it finds a better path, there is more crap to tidy up. It is a bit of a vicious circle and you’re the one in the middle trying to coordinate it. Wouldn’t it be great is our bodies came with a manual based on our genetics? There is piece of good news in that NAC obviously is doing something for you. But perhaps you could consider pulling back on the dose to minimize herxing?

      It is hard to know the best way to handle herxing. When I started the glutathione, I had read about herxing and so kept it at half a dose, but I reacted anyway. At this point, I was desperate to improve, so just, as you suggested, toughed it out, feeling awful and questioning whether it was herx or just a bad reaction for 10 days, when I suddenly felt oh so much better, and moved up my dose without much reaction at all. However, I think what you do needs to be right for you – where is your threshold both physically and psychologically? What does your intuition tell you? I don’t think one can avoid some herxing on the way to getting better, but I do think that you can moderate it, taking tiny doses of what you need and increasing over days or weeks. I did not, as you have, suffer from brain problems from cipro. I guess I would also support your brain/nerves as much as you can through this. The Mag Threonate made a huge difference to my memory – better than its been in years, so I expect it improves all brain function. Are you taking supplements to support mitochondrial function? I took: D-ribose, CoQ10 (or MitoQ), and L-Carnitine (or Acetyl-L-Carnitine). For the latter, I would choose the acetyl-l-carnitine as it works better in the brain. And BTW – I should have mentioned this earlier – the day I took D-ribose I could feel my heart almost burble – like cells waking up. I would encourage this grouping of supplements for sure.

      And as far as the impending heart attacks – I did the same as you – at some point I had to believe my heart was going to keep beating, even if erratically, and after an initial echocardiogram which did not show much except arrhythmia, I decided that as long as I continued to improve, even if very gradually and slowly, I would not get my heart tested again because I sure as heck did not want to be put on calcium channel blockers or other such interventions which would throw my body chemistry off even worse. I’m glad I did this, but once again, I have to encourage you to do what feels right to you. I can’t advise my approach being the best one, it just worked for me.

      I hope your night tonight is less dramatic. And yes – your purring kitty is very grounding. I have one of those too.

  39. Nicole Reedy July 3, 2016 at 8:31 am Reply

    Hello Bronwen,

    How are you doing up there in the great wide Yukon?

    I have a mag. question for you. My Mag. L-Threonate says 667mg mag. threonate but I see the mag. count only says 48mg mag. I also take bisglycinate that has 150mg and it says I can take two but if I take the second one it does affect my intestines. I see you said this one did not work for you very well. I was getting mag. in my weekly IV. I also used the oil spray & cream along with epsom baths.

    My tendons were getting stronger so I pushed myself a little over 3 weeks ago and started some physio & we had also upped my glut. IV as high as we could go ( had gone slowly like you suggested ). Then boom! I go all over body burning that moves from place to place but was so intense I would lay in the floor and cry. Not as bad now but it did stop me from using the mag.oils and taking my epsom baths. My NP has also cut the IV’s off for a couple of weeks because she felt we had triggered a detox that needed to just release. I go back for one this week though.

    I asked the chemist who actually owns all the Pure Intergrative pharmacies for the glut. liposomal you took while I am not getting the weekly IV & he told me he made a glut. cream that absorbs better than taking it orally. My NP agreed that that was true with the glut. so I am using it daily.

    Anyway I do not feel I am getting enough mag. now & since I did have to order the L-Threonate do you know of one with more mag. I could order? Do not know why mine has such a low count of mag. & only says take one a day?

    Do you ever get back down here?

    Thanks for all the help you have given me from day one!

    Your Vancouver Floxie friend,

    Nicole

  40. Bronwen July 3, 2016 at 8:13 pm Reply

    Hi Nicole: Yes much of the mag threnoate is not the mag part. One of the supplier bottles I has said to only take one a day. However, the other companies seem to say 144mg, which would be 3 pills. I found I could not take one later in the day as it would keep me awake so I took 1 at breakfast, 1 at lunch and 1 mid afternoon.

    I expect your NP is right about triggering a detox. I found that moving into more exercize made me worse, but each time, then that threshold became less. The same is true of a massage or anything that helps release the garbage (ROS, dead cell stuff) from the muscles. I found mag malate gave me less of an effect on intestines than mag bisglycinate, but I understand it can be an individual thing (Melinda in the comments suggesting Mag citrate in CALM). In the last 3 months I increased my mag from about 250mg a day to 600mg plus the odd epsom bath and it has made a world of difference to my remaining symptoms, but I doubt I could have done this earlier on. Maybe wait a while until things are more at balance in your body before increasing the mag a bunch, but I would put up the mag threonate amount as it really does not seem to effect the intestines too much and goes straight to the mitochondria where it is needed.

    I am loving the Yukon – it is awesome here in the summer – incredibly beautiful. I get down to Victoria fairly often – I have a daughter, more family and many friends there. I miss the sea too, but enjoying the Yukon adventure.

    Wishing you continued healing…

    • Nicole Reedy July 7, 2016 at 2:53 pm Reply

      Hi Bronwen,
      Thanks so much for the mag. information. I will up it and maybe try mag. malate as well. That was the one my NP recommend.
      She tripled my mag. in my IV yesterday & I found it had really settled my heartbeat last night. I was afraid I was not getting enough.
      So happy you are enjoying your new adventure & job. A change can be very good for your health sometimes.
      Enjoy the rest of your summer & thanks again!
      Nicole

  41. Genevieve July 11, 2016 at 1:31 pm Reply

    Hi Bronwen,

    I wonder, did you at any time have any eye or vision trouble? I have it very much with this. Some of it I think is neurological, where they don’t seem to focus together. But the other issue is with my eyes themselves, the feeling that is a gel coating on them which makes my eyes feel very strange in my head in addition to the blurry vision that comes with it. It comes and goes and was not there the day I saw the ophthalmologist (who is very kind and believed me about the floxing, at least) so she couldn’t see the problem. But she said she thought it sounded like scleral swelling when I described how pushing the skin at the corner of my eye actually makes the white of my eye wrinkle up.

    It’s unpleasant and the blurred vision is scary, but at least so far I haven’t had a detached retina like some poor floxed people get. Do you have any experience with this? Using the computer, which I have to do for work like many, probably is no help but I have no choice at the moment, except to try to take breaks. The Opthalmologist gave me some simple eye drops to use to moisturize the eyes, and I’m not sure if that helps or not. Any thoughts?

    • Bronwen July 11, 2016 at 5:08 pm Reply

      Hi. I never had eye trouble. I think it hits everyone in different ways and organs. For me, the scariest organ was my heart, but I had very limited neurological issues. Have you tried searching the word “sight” on this website’s search engine? It would be great if you could read someone else’s story with eye issues. I hope you can connect to someone who can help from firsthand experience.

  42. Sophie July 18, 2016 at 3:19 am Reply

    Dear Brownsen, first I would like to thank you for your posts which are always very encouraging! I m 30 and it s been nearly one year since I ve been floxed, and I m still having lots to deal with. I have joint problems including ankle and hip arthritis, sight problems and the worst for me now is an autonomic dysfunction, which regulates so many things. (Digestion, heart, saliva, eye dryness…). So when I experience this ‘autonomic dysfunction’ at the worst, I have kind of fainting moments… in which I have spasms everywhere in my body, including intestines… heart palpitations, shakiness, hot and cold, numbness in my face, fingers, muscle weaknesses… you had heart problems and pains in your upper abdomen and chest, just like me. I don’t know if this dysfunction can stop one day or if it s irreversible… do you know anything that could help me? Thank you very much. Take care. Sophie.

    • Bronwen July 18, 2016 at 6:47 pm Reply

      Hi Sophie: yes – it can feel disheartening, but I believe the body tries very hard to fix itself. We just have to work and research (as you are doing by asking me!) at finding those missing ingredients. If the body is struggling it is my philosophy there is some piece of chemistry missing which can be influenced, of course, by our individual genetics. I can only discuss what worked for me and my particular chemical/genetic mix. Although I can’t be sure my experience or advise will help you, it is good to ask those who seem to have similar symptoms, and none of what I suggest is something you can overdose on.

      I too had quite a bit to deal with still after one year of floxing. Based on the supplements I listed in my original story, I had already “fed” my mitochondria, and managed “detoxing”, but still had rib pain, chest pain, upper back pain like fibromyalgia, heart arrythmia, and right arm tendons that felt quite fragile – all these symptoms less than before but still present. I tried to figure out what other what my body might be short of, looking back into my history before floxing for hints and came up with two things.

      Collagen: I am very tall and probably have poor connective tissue. This seems to be a risk factor for floxing, so what could possibly help poor connective tissue. I started taking some collagen called Within Us Tru Marine collogen from the scales of wild fish. The Collagen made my tendons and rib pain/senstivity feel better within days.

      Magnesium: How much magnesium and what type do you take? Although I originally thought that my heart arrythmia was due to autonomic dysfunction, I’m now not sure as it immediately improved when I upped my magnesium. See my first response to Genevieve in the comments above. I was taking some magnesium (200mg a day), but when I started reading how my previous body ailments (osteoporosis and vertigo) can be due to low magnesium and how common low magnesium is, and being floxed chelates the magnesium in our bodies, and how so many co-floxies have needed large amounts of mag to heal, it was as if a light went off for me, and I gradually upped it to 600mg elemental mag a day over 4 doses (100 threonate and 500 mag malate). I had to do it gradually, as it caused a bit of a herx, but then I’d cut back for a few days before bringing it up again.

      Now, just a couple months later, if I don’t take enough magnesium, my heart, fibromyalgia and chest symptoms reappear. And magnesium makes them go away again within the hour. I believe after 6 months or so, my magnesium stores will be back and I will be better able to manage forgetting a supplement! I just did a quick online search about the connection between nerves and magnesium and it seems like a good thing to look at.

      The other thought I have is around acupuncture. Practitioners vary a lot, but those that offer western acupuncture are totally focused on stimulating, and calming the nervous system.

      I do hope this helps! Please believe in your body to heal. Even when presented with the “right” ingredients to heal it needs time to adjust to the better reality. Be patient and sending you healing thoughts,
      Bronwen

  43. Kelly Lynch Stange July 18, 2016 at 7:37 am Reply

    Bronwen,
    Thank you for your post – I have read so many stories on Floxie Hope and yours is the one most similar to mine, I’m
    35 and I can’t seem to get anyone to help or understand the heart complications and tendon issues I developed immediately after my first pill. I would LOVE the opportunity to speak with you by phone. Please let me know if you would consider speaking with me. My email is my name above @ gmail.

    • Bronwen July 18, 2016 at 6:58 pm Reply

      Hi Kelly. I just emailed you. Hope you get it.
      Bronwen

  44. Genevieve July 21, 2016 at 12:07 pm Reply

    Hi Bronwen,

    I finally got a bottle of Neuromag (Threonate) from the AcuP doc, and the recommended dose is 3 capsules equaling 2000 mgs. The magnesium malate I’ve been taking recommends 2 capsules daily equaling 360 mgs. I wonder why the difference is so big. I see in one of your comments earlier that you too had a kind of magnesium Threonate with that 2000mg dose recommendation and you took just one plus other magnesium you were taking.

    So my question is, did you wonder about this big difference in dosages and why that was, and if so, did you find any answers? Is there a good reason to keep taking the malate as well? I’m worried about taxing my kidneys and trying to decide if I should take only 1 of the Neuromag and none of the malate for a while. Any thoughts you have would be greatly appreciated.

    Meanwhile I started also on R Lipoic acid and a really good fish oil (which unfortunately my kitty doesn’t want to share because it has an orange flavor). The other thing bugging me is my skin, which is really suffering. (It has been for some time, starting after my previous flox which I didn’t yet know I had and so I’d chalked it up to shocking post-menopausal developments) and I’m trying to find some way to help that too. It’s like having the skin of an elderly person–not merely dry, but very thin and papery, and with this in addition to the muscle wasting and tendon trouble I feel almost unbelievably frail. You mentioned having some skin things and taking collagen. Do you have any opinions on what might be helpful for the particular dreary problem of thin papery skin :), collagen or otherwise?

    Thank you!

    • Bronwen July 21, 2016 at 12:53 pm Reply

      Hi Genevieve

      The mag threonate has elemental mag of only 144 mg. The total for the mag plus the threonate is 2000mg. The elemental mag is the number that matters and of course it is confusing because different bottles list things differently. Maybe this particular supplier did not list both the elemental amount and the total amount separately. The substance that binds the mag enables how your body can absorb and use it. The threonate takes the mag right through INTO the mitochondria as well as into the brain. It is the only mag (so far) that can make a big difference to these parts of the body (and nerves). The malate is particularly good for muscles, being used by those having fibromyalgia among others. If you have muscle wasting, i would not want to reduce it! I would recommend continuing to take your 360mg of mag malate and add in one threonate for a few days at breakfast, then move to an additional one at lunch. I noticed on the first or second day how my brain started working like I was much younger. You could go to three – after all extra mag is removed through the kidneys, but I’d make sure you have them in the earlier part of the day, as I found initially that they made my brain much more active and it was hard to sleep if I took one at dinner. In this way your total mag would not go over 450 to 500mg and this is touch more than the recommended daily dose of 300mg for those not suffering with any issues. And always remember to keep drinking water. This really helps the kidneys move things through that it needs to do. I think the mag actually mobilizes calcium that has got “stuck” in the wrong places in the body due to the fluoroquinoline yanking the mag from cells initially – the calcium flows into the spaces the mag is supposed to be and it takes time and patience for the balance to reestablish.

      Once again, I need to reiterate, that even though I’ve given specific recommendations above, I’m not a doctor, I only know what worked for me and what I’ve read (which is a lot by now!) Always make sure what you do feels right to you.

      As far as skin goes, I don’t really have recommendations beyond the collagen and of course no sun and a nourishing skin cream. All the other supplements will indirectly allow your skin to grow stronger hopefully over time too. I believe mine has improved – but especially after the collagen. I’m an advocate too, of doing little bits of exercise – it may seem counterintuitive to push a body that feels frail, but just push it for little amounts – five minutes of stretches a few times a day moving to longer stretches or walks eventually. I believe this mobilizes the muscles to flush things it needs to remove and also forces your body to try to re-find a balance.

      Wishing you all the best!

  45. Genevieve July 23, 2016 at 1:27 pm Reply

    Hi Bronwen, I’m looking at the brand of collagen that you recommend, those little sugar stick packs are kind of nice. What I wonder is how much you take daily, and what do you put it in? So far so good with the mag threonate and R lipoic– 🙂 I thank you! I hope you see a moose today.

    • Bronwen July 23, 2016 at 3:16 pm Reply

      Hi Genevieve: I just take 5g (same as Nicole below) but put it in my morning smoothy along with high-fat (yes!) yogurt, berries, an organic banana, a bit of organic juice, whey powder (Harmonized Protein brand from antibiotic free New Zealand – whey is supposed to boost glutathione production) and most recently, just because they are growing wild all about my house, dandelion greens (supposed to be very high in minerals)! Yum. But, you can put the collagen in anything really – it doesn’t really taste.

  46. Nicole July 23, 2016 at 3:06 pm Reply

    Hi, this is Nicole. My jar of Tru Marine has a scoop in it but says 5-10g a day.
    I just do 5g in water.
    I really like it a lot!
    Good luck!
    Nicole

  47. Genevieve July 23, 2016 at 3:55 pm Reply

    Thank you, Nicole and Bronwen. I guess then I should order the loose powder in that case. And is the scoop measured at 5 gs?

  48. Genevieve July 23, 2016 at 3:57 pm Reply

    Also, I’ve read that it’s good for skin, hair, etc, but do you think it is also good for the heart and eyes? It seems it would be. 🙂 I wonder too if it would be good to sprinkle a wee bit into what I give the old kitty.

    • Bronwen July 23, 2016 at 4:14 pm Reply

      Collagen is good for connective tissue which is what every organ in our body needs to maintain integrity. Some have more need for collagen (such as skin, tendons, cartilage) than others. I’m curious if it helps your eyes – let me know. That would not surprise me. I expect it helps the heart somewhat, but as a non-scientist, I would guess that mitochondrial health is of #1 importance for the heart, as the heart has the highest concentration of mitochondria of any organ as it has to pump endlessly.

      I wouldn’t sprinkle any on your kitty’s food without checking with a vet. I’ve learned they really don’t have the same bodies and nutrient needs as us and I’d hate you to upset some kitty balance.

  49. Nicole July 23, 2016 at 4:16 pm Reply

    Yes, the scoop is 5g.
    Our aorta is collagen as are many other parts of the body so very good for heart health I would think but Bronwen would know more about that.
    Not sure about kitty without asking a vet but many things we take are good for our pets!
    My nails have been a weak mess for years but seem to be getting stronger!
    Nicole

  50. Genevieve July 23, 2016 at 4:54 pm Reply

    Thank you! I so appreciate the both of you replying. Okay, I will not give any to my kitty. She gets plenty of good things as it is. 🙂

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