*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
In April 2014, I was prescribed seven days of Ciprofloxacin (2 X 500mg) for a possible urinary infection. At 53, I was in great health, eating very well, going on many vigorous hikes, and taking exercise classes.
If I knew at the beginning of this rather awful adventure what I know now, I am convinced I would not have sustained so much damage. I am also convinced that if I had not taken full control of my own health as it got worse, I would now be on disability. But, one year later, I am mostly recovered, stable as long as take my supplements, and feel 80 to 90% of my past fit self. I am not sure if I will reach complete recovery. That’s OK. I am happy to be able to once again hike for miles, even if I’m not going up big hills with a backpack.
There is an additional sadness in this for me, as I relived some of my father’s suffering. Even though my family eventually (and too late) connected Cipro to my father’s devastating peripheral neuropathy, we had not realized that it also probably contributed to a number of his final health problems, including heart failure. I had forgotten the name of his antibiotic, or I never would have taken it. I guess I’m living proof that Cipro reactions may have a genetic cause.
The first day, my heart pounded loudly when I went for my noon-hour walk. I shrugged it off, as it reminded me of how my heart races during hot flashes. On the fourth day, my jaw got misaligned after eating popcorn and I realized I was unexplainably depressed. On the fifth day, my shoulder collapsed painfully when I put weight on it as I shifted seats in the car, and on the sixth day, when I wrung out a dishcloth, my right wrist tendon hurt excruciatingly. I finally clued in, stopped Cipro a day early, and started online research. What a horrible thing to find out that fluoroquinolone damage can be cumulative and symptoms were likely to grow in number and intensity! And, like so many others who do not have robust DNA damage repair mechanisms, that is exactly what happened to me.
TENDONS, LYMPH GLANDS, HEARBURN, NERVES: During week 1 and 2 (post drug) I had my first “set’ of symptoms. My initial tendon damage worsened to the point I could no longer play the cello, write properly, or open heavy doors without re-damaging the tendons. This was combined with episodes of tingling rushes and numbness running down my arms and into my hands and very occasionally my legs. My arms would feel weak and disconnected, so I would swing them around to make them feel “alive.” My research showed this could be a side effect of swollen tendons manifesting itself as thoratic outlet syndrome, but also reading that Cipro attaches to the GABA A receptors, I realized it might actually be nerve damage. These symptoms lessened within weeks, but did not completely disappear for many months.
I went for a massage and although it felt wonderful, this worsened things within the hour. I now realize it released toxins from my muscles were holding into my blood stream so my body reacted.
Other symptoms included very swollen lymph glands, especially behind my ears and in my armpits. Often, I could not close my jaw properly as the swelling behind my ears threw my jaw slightly out of alignment. This, and some heartburn, also gradually subsided over the next few months.
I feel fortunate that the temporary depression I experienced, while taking the drug, lifted and did not return. I know that alternations in cognitive and emotional states are very common for those that are “floxed.” The life-saving value of fluoroquinolones is due to their ability to permeate every cell in the body, including the brain, which is why, for those who react, it can create incredible damage in any number of organs. My most vulnerable organ was my heart, and this started to take most of my attention…
CHEST PAINS, HEART ARRYTHMIA, HEART POUNDING: The intermittent chest pains, which I had tried not to notice earlier, suddenly worsened at week 2 and worsened again at week 3. My blood pressure went sky high for a day or two and I ended up at the doctor’s office with what felt like a 20-pound weight on my chest, and my heart pounding so loudly I could feel the pulse in my toes. My doctor had known me for decades and agreed I was experiencing a drug reaction. After a few tests provided no enlightenment, she suggested I go to emergency if things got worse, and realizing she did not have the tools to help me, supported my idea of seeing a naturopath. I live in Canada, so do not pay for medical tests, although I do pay for a naturopath. That evening, I drove to emergency, as my heart seemed to be revving out of control. Emergency doctors smirked at my assurance my symptoms were caused by Cipro, and although the tests they chose confirmed non-life-threatening arrhythmia and high blood pressure, there were no other points of concern. I was relieved and frustrated in equal amounts. This is when I decided to start taking control – I bought a blood pressure cuff to monitor my own blood pressure and was pleased to see it soon dropped.
UPPER ABDOMINAL PAIN, UPPER CHEST PAIN, UPPER BACK PAIN, INTERNAL TREMORS, DRY SKIN: Along with my heart symptoms, I started experiencing upper abdominal discomfort, along with upper chest and upper back pressure/tightness/pain that would increase through the day. The upper abdomen pains went away over the next few months and, in retrospect, I think the cause was likely a compromised liver. However, my whole chest circumference continued to feel fragile and the constriction of wearing a bra around the ribs felt damaging. A year later, my best guess is that this is costochondritis (inflammation of rib cartilage) combined with myofascial pain, and I still suffer from it, but less.
At week 3, I started having some “whirring” internal tremors which, although occasional, were disturbing. It felt like electrical synapses were misfiring. These gradually disappeared after month 6.
I also became aware that my skin was extremely dry – that there were some rough scaly patches on my arms and even on my face. Initially, I couldn’t care less, as my other symptoms took precedence, but eventually I bit the end off my CoQ10 (lipid) capsule and put a drop or two in my moisture cream, and this really seemed to help.
GETTING WORSE – HEART AND FATIGUE: Between week 3 and month 6 my heart gradually became worse and fatigue set in, with symptoms worsening through the day. Not only did my heart seem to pound, shaking the whole chest so I could not sleep on my left side or back, but unless I was being slightly active (walking) the beats were WAY out of time, bouncing all over the place, and I had a couple 30 minute periods of tachycardia.
I saw the naturopath and in addition to Omega 3, Vitamin C and D, Calcium/Mag, I started CoQ10, some Magnesium, and B vitamins. I also started some homeopathic UNDA remedies which I later dropped.
CYCLING OF SYMPTOMS: It took a while to realize that all the symptoms went in a 6 to 10 day cycle – from almost not present to overwhelming. This was very confusing to me and health care providers, because each time I improved, I hoped I had healed permanently. One year later, the cycle has faded away.
FOOD AND BOOZE: I’ve always eaten very well, but I wanted to maximize my chances of healing so moved towards a hunter/gatherer diet, eating lots of protein, nuts, vegetables and fruits. But, soon I had to add back whole-grain carbohydrates as I started losing weight. I also discovered that booze actually helped me. I began to dread evenings as symptoms would worsen. But I learned that when I started rocking in pain or worry and/or heart arrhythmia and pounding was at its maximum, one alcoholic drink would not only dull the pain, but actually calm down the symptoms too. It was actually quite miraculous. I know alcohol affects GABA receptors and that Cipro binds to them, so maybe it calmed some form of Cipro overdrive. I don’t know, but I know it helped me when I needed it.
TAKING MORE CONTROL: At month 2, I had a day of reckoning, where I realized my heart was giving out unless I did something! It was frightening realization that I had to count on only myself and yet I was no expert. So, I wrote an email to my friends/family to send me strength and decided I would have become an expert as far as I could. It is interesting to think back on where I was psychologically at that point. I live on my own, and had no-one to either assist me or listen to my worries day to day. I also needed to continue working as I am the sole wage-earner. I have lots of people that love me, but it was hard to reach out to friends and family when you don’t want to worry them, or pressure them with more than they can handle. Besides, how could I ask them to believe what was going on in me, when I could hardly believe it myself, and I did not have the backing of some doctor’s prognosis? I had to be strong. I had to find the compromise between just maintaining forward motion for survival, but also taking full control of my own healing. Some days it felt like I was limping forward like an injured animal not being able to intellectualize what was going on, but just getting through the day so I could go back to sleep to make it go away. But, I knew my only way to heal was to find my own research and cure, and would spend two or three hours a day on the computer, digging past all the worries and hype to scientific studies.
I was determined not to take any other drugs unless I absolutely had to. This means I went against the suggestions of some friends, who advised I go to cardiologists and other specialists, but I did not want to prompt test results that might dictate a cocktail of more pharmaceutical drugs. My experience in emergency taught me not only how the medical system was not attuned to Cipro toxicity, but that I was in no immediate danger – I was not going to have a heart attack. I was convinced Cipro broke one or more chemical reactions in my body by removing core components and I needed to focus on adding back into my system what might have been removed or damaged by Cipro, and I would reconsider tests at the end of whatever healing process I could manage.
My first “aha” moment came when my research discovered a chronic fatigue specialist, Dr. Myhill, who connected symptoms, exactly the same as mine, to mitochondrial failure. I then googled Cipro and mitochondria and discovered that yes, Cipro and other fluoroquinolones cause mitochondrial dysfunction, and subsequent Reactive Oxygen Species (ROS) overproduction which damages DNA, protein, and lipid damage and cellular death. Dr. Myhill said that the heart is 40% by weight mitochondria because it needs to produce a lot of energy, and if the mitochondria cannot work efficiently, it simply cannot pump through enough blood. Chest pain results when energy delivery to the muscles is impaired. There is a switch to anaerobic metabolism, lactic acid is produced and this results in the symptom of angina. She recommended certain supplements to improve mitochondrial energy output which I then found replicated by some forward-thinking cardiologists. I started on D-Ribose, L-Carnitine and already was taking CoQ10 (see the SUPPLEMENT section below). Fifteen minutes after the D-ribose, I felt tingling all through my heart like cells were waking up. And so they were.
CURING THE OXIDATIVE MESS: Although my heart seemed a bit better, the fatigue did not lift. At this point I was bad enough to be on disability as I felt I was doing some damage if I pushed myself past standing up for 10 minutes, walking more than 50 paces, and napped every few hours. I think I was in some form of denial so I could allow myself to simply continue. When I was offered a more interesting job in a different town, I moved. In retrospect, I realize I was not really strong enough.
By the month 3, I was desperate. Through my research I realized that the “vicious cycle” of mitochondrial damage and oxidative stress makes it so that damage is accelerated as time goes on, and even though I was probably helping my heart make energy, there was too much accumulated mess for it to work. I found out that glutathione is the master naturally-occurring antioxidant in the body, and that if you naturally have low glutathione, or it is completely compromised by toxic overload, your body cannot complete the energy-producing methylation cycle properly, or regulate a variety of cell stresses. I read that NAC (N-acetyl-cysteine) is the most important building block of glutathione and so started this as well as quality whey protein powder which is high in all the specific amino acids which are precursors to glutathione production. It didn’t work. I was fortunate to talk to a local natural supplement guru, who explained that if my methylation cycle was actually broken (forced to use an inefficient workaround), I would need to actually take the glutathione itself. He also found me a source of liposomal glutathione, a less expensive alternative to an IV of glutathione, which until recently was the only other format that would ensure absorption. I started it gradually as I read that releasing the toxins from their hiding places in your body can cause what is known as a herxheimer-type reaction, where the body reacts to the rise in mobile toxins by becoming unwell, before it can clear them and get better. I temporarily became really unwell, but I promised myself I would stay the course for two weeks, at which time I definitely started to improve. I continued to persevere and starting month 4, my energy returned and symptoms decreased. Finally!
I started focussing on why I might have had a reaction, taking methylated forms of folate and B12 in order to support a possible MTHFR gene mutation.
EXERCISE: I have always tried to “hike” out my problems. When I was first compromised, I tried to push my body too hard. It seemed there was always strength in the moment, and even though I felt a tenuous warning from within, I did not listen. As with chronic fatigue patients, the effects of overextension are felt with a crash the next day. However, as I gradually improved, I started pushing my body, which used to be very capable, to do what it was supposed to do, hoping to gently stress the mitochondria into better production, without creating more oxidative stress by overextending. At first I followed 10 minutes of an exercise video or took a 10-minute walk every day, but by month 5, I progressed to a one-hour exercise class or a 5km hike.
YAY MAGNESIUM! By the month 9 my fatigue was lifting, but my heart was beating way out of rhythm much of the time. I knew that the magnesium I was taking was minimal, although any more caused diarrhea. It wasn’t until I heard the Floxie Hope podcast with Ruth Young that I realized I needed to force my body to take more magnesium because it is an essential part of transporting electrolytes that regulate heart rhythm. I send away for magnesium threonate because it absorbs so well (avoiding diarrhea) and is especially effective in reaching the mitochondria inside cells, and magnesium oil, which I have been spraying on my skin ever since. Within a couple of weeks, my heart pounding and my arrhythmia was incredibly improved! The mag threnoate made my dreams go incredibly vivid, and as I improved, it seemed to keep me awake at night, so now I only take it in the morning. I stopped taking calcium I had been on for years as it can prevent magnesium absorption and I continued to perfect my mixture of supplements, adding MitoQ, PQQ and R+ Alpha Lipoic Acid (see SUPPLEMENT section below).
Then, I became a little overconfident, allowing my glutathione supplement to tail off. Within a month or so, I started regressing, and realized the cause. Even though my methylation cycle was operating, it still needed an outside source of glutathione to work properly. Instead of more liposomal glutathione, I decided to try NAC and quality whey, and this time, they brought my health up again in a few days. This means my methylation cycle is still compromised, and not crashed – a cause for celebration.
NOW, AT ONE YEAR: Healing is slow, but steady. I figure I am 80-90% better but realize I may always need to continue taking some supplements to maintain optimal health. I am more careful with myself. I nap when I need it, I don’t have more than two drinks, I alternate physical days with non-physical days, I eat mostly whole foods and I will pull away from stress overload. I still have some heart issues such as mild arrhythmia and on days where I overextend, the heart “thumps” a little too loudly. I chose to go for an echocardiogram and it shows my heart has stretched in places: my left atrium has a little dilation and I have mild mitral regurgitation. I don’t know if this is reversible or not, but I’m OK, and will be re-tested. Recently, I started feeling I actually had more energy than I needed when I was walking and this made me feel very joyful. I am walking up to 10 km, and I almost feel ready to try climb a hill or two.
The tendons in my right arm and my shoulders still feel shortened and I baby them a little, but they are not stopping any form of exercise. My muscles, except my heart, feel as strong as they ever were.
I still have upper torso discomfort appear many days, and now the constochondritis seems to also be affecting the cartilage around my trachea. I focus on relaxing, breathing deeply, and it lessens. However, my upper back is tight with muscle knots, so every day I do some stretches and some strength exercises, as keeping active reduces the discomfort. I don’t worry though – I know that I have now given my body everything I can to help it heal almost anything and I believe it is and it will. Patience.
WHAT I WISH I KNEW THEN: I would suggest anyone taking any fluoroquinolone drug also take NAC as studies show it can prevent the resulting oxidative damage. I would also suggest that they take magnesium at a different time of the day to the drug and for a couple of months afterwards, in the best form they can find.
If someone becomes “floxed”, I would suggest they immediately go on supplements for mitochondrial health and liposomal glutathione (see SUPPLEMENTS section below) to see if they could prevent further damage.
FINAL THOUGHTS: I believe we have to stop expecting healthcare providers to be well-versed in the exact area of science our own body problem requires. This is because there is only so much each healthcare provider has the ability to assimilate, especially with internet information explosion. The way western medicine is set up, GPs are overwhelmed, trying to filter out who they should forward to a specialist, and specialists are more than likely to be only investigating one isolated part of the body, unlikely to piece together the systemic puzzle. Even the health care providers that do view the whole body, such as naturopaths, functional specialists, or doctors of diseases such as chronic fatigue, are not always able to benefit from each other’s insight.
Since the middle of the last century, our western society has been brain-washed into trusting science implicitly. But, science is an imprecise art. Just because something is discovered and given a name, does not mean its mechanism is understood. So much cannot yet be detected. But, nevertheless, the majority of our society expects a “scientific” drug to cure their every little problem. Very unfortunately, this has given the pharmaceutical industry almost infinite control to supply hope in bottles, whether it is effective or damaging. Even if science may strive to better our health, pharmaceutical companies strive to better their profits. And doctors, who we count on, have no choice but to rely on regulators persuaded by this multi-billion dollar pharmaceutical industry.
As drug consumers, we also need to realize drugs and even some “natural” cures work by shifting our body chemistry. Sometimes there is a miraculous cure, but often, the consequence of the shift is not considered. For instance, Acetaminophen reduces intracellular glutathione levels, which is also essential to remove toxins from your body.
We need to help facilitate information exchange between doctors, patients, and researchers. It is hard to question doctors. But we are each a specialist in observing our own bodies, and if our own precious health or life is compromised, we have a huge incentive to pull together research which might be valuable to all. I encourage others who have been “floxed” to document their symptoms, research, and cures in a way that is accessible to the medical community. It gives credibility to walk into a doctor’s office with a report, even if you are the author, and also facilitates the gathering of data for studies. I started my report in order to fulfill the “tell it on your own words” needs of the University of California, San Diego, School of Medicine “Fluoroquinolone Effects Study” (www.fqstudy.info) and then used it for Health Canada Adverse Reaction reporting, and after seeing my report, geneticists in British Columbia, where I live, referred me to be part of a University of BC study on Adverse Drug Reactions.
I have conducted over 400 hours of research on my symptoms and Cipro. On this Floxie Hope website, Lisa has gathered extensive of resources, so I see little point in listing my own. However, I’d like to mention one more I stumbled upon recently as it gathers tons of research about MITOCHONDRIA and how they work and what to do when they don’t in a very comprehensive and easy-to-read way. http://www.knowmitochondria.com/. The author, Lee Know, includes a section on why mitochondrial damage causes each symptom, what supplements are indicated, and why. Note: Although the author has not listed fluoroquinolones in the long table he supplies in his section on “Medication induced mitochondrial damage and disease,” I have been in contact with him and he is in absolute agreement.
I’ve been fascinated by what I’ve discovered, but because it is not mainstream, I’ve found I need to be careful when discussing it with those who are invested in traditional medical solutions. I’ve discovered energy production by the mitochondria is a foundation for health and well-being, and necessary for physical strength, stamina and even consciousness. This means that mitochondrial health is vital to every organ and body function and nurturing this process may in fact allow each our organs the best chance to heal their own imbalances. Compromised mitochondrial function is now seen as one of the leading causes of a wide range of seemingly unconnected degenerative diseases such as chronic fatigue syndrome, depression, Alzheimer’s, Parkinson’s, Huntington’s, fibromyalgia, cardiovascular disease, type 2 diabetes, mitochondrial disease, infertility, some eye and hearing-related diseases, cancer, autism and more. And it should also be no surprise that a drug that compromises mitochondria, such as Cipro, is beginning to be implemented in actually prompting all the above listed diseases.
I’ve also discovered that each of our genetic makeup predisposes us to a differing set of set of potential ailments and these may or may not be realized. We may ride out these instabilities without symptoms, or they may be triggered by life, by stress, accumulated toxins, or by, in the instance of Cipro, an imposed chemical imbalance. I can’t help wondering if all the accumulated toxins from food additives, drugs, pesticides, and a huge number of industrial contaminants are shifting the point of balance in each of us closer to the tipping point. According to Lee Know “the field of mitochondrial medicine is exploding, with over 200 to 300 related studies been published each week.” It is too bad there is not an adequate mechanism for this information to reach the frontline healthcare providers.
I’m not yet sure what genetic tendency Cipro might have triggered in me – although I believe it is some ingredient in methylation, where the cell’s mitochondria DNA takes raw chemistry and turns it into energy. It could be that I have a genetic tendency to not metabolize folate well (MTHFR gene) or make glutathione efficiently. Or, it may be that I had already reduced the magnesium in my body to such a low level through the use of year so heavy-duty calcium supplements because extra calcium washes away magnesium. I have some genetic testing booked. I’m not sure if it will find what kind of strange thing happened to my body, but I’m just pleased my experience has been recorded to help build the body of science. And I’ve found one advantage: all these supplements have improved my brain function – I feel it works as well as it did when I was in my 20’s!
SUPPLEMENTS:
To support mitochondrial health – essential:
- D-ribose – the raw energy every living thing makes in our cells – New Roots makes it at a reasonable price
- L-Carnitine – I take both acetyl-L-carnitine and L-carnitine, because the first is best for your brain/nerves and the second for your heart, but either will do (reasonably priced)
- CoQ10 – this can be expensive because you need top quality. I use a Thorne Q-best which is oil-based
To support mitochondrial health – good:
- MitoQ – only one source, from New Zealand and expensive. But it is COQ10 altered to enter mitochondria more efficiently, so you can substitute it for some/all of above CoQ10
- PQQ – a moderately-priced newish B vitamin that may help mitochondria replicate
- R+ Alpha Lipoic Acid – moderately priced. Be sure you get the R+ version
To support oxidative mess:
- Liposomal glutathione (you could use IV gluthione as well) -this is if your body is quite compromised. Other forms don’t absorb. Expensive but well worth it.
- NAC (N-acetyl-cysteine) – If you’re not as compromised but need some detox. It is a glutathione precursor
- Whey protein – only use high quality, from cows raised without antibiotics! Contains all glutathione precursor amino acids
Additional oxidative stress help:
- Omega 3
- Vitamin C
- (Vitamin E)
Other essential supplements
- D3
- Magnesium – ESSENTIAL! Cipro robs you of this. Magnesium threonate is easily and quickly absorbed into the mitochondria and brain. Magnesium oil is also quickly absorbed. Magnesium bisglycinate is excellent but did not work well for me
To support a body that MAY have been compromised by the MTHFR gene problems:
- Methylated Folate (L-5-MTHR) and Methylated B12 (Methylcobalamin) – only a few companies make the methylated versions of these B vitamins. Ideally in a form with other B vitamins in a top quality B complex such as Thorne Stress B or AOR Advanced B Complex.
To support absorption and processing of everything:
- Probiotics
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Hi, My name is Jason and I am a "Floxie" too. My mission is to help others, share knowledge and awareness with Floxie Hope. Join me in my mission to spread hope for those affected.
Thank you, Bronwen!
It gets hard sometimes as the relapses seem worse than before with new symptoms.
I am just a old lady gettig tired I guess.
I will keep on trucking & must admit I have never met so many kind, helpful & wonderful people as I have through FQ toxicity.
Not a great way to find great friends but so grateful for you guys!
Hugs,
Nicole
So hated seeing your post Greg! I understand everything you are feeling and saying.
I had started a new statin ( the last 1 had caused me terrible problems ) when the 1st Cipro sent me into hepatitis & was still given 10 more days of Avelox without a working liver. It has been 7 months since that fateful day & my life I am afraid will never be the same. At first I thought okay my liver will heal. Then 5 weeks later tendon problem started with at least one rupture. Did not end there & I got into a NP right away and have done everything money can buy to stop this. Yet have had burning neuropathy, hives, joint cracking, bone & joint pain & dry wrinkled skin. My only dr I have seen that said I have never given this line of antibiotic & never will was my cardiologist!!!
My heart is with your father & you. I am nearing 66 and this is the worst nightmare I could imagine!
Nicole
Nicole: Don’t stop believing you body has the capacity to heal. You’re doing all the research and trying to provide it with every opportunity you can which is awesome and will pay off over time. It is very hard when the symptoms cycle up and down, but gradually, very gradually, you’ll find a turn around and improve, just a little and then a little more – maybe not completely but so you can feel happier. Yes – it is harder when you’re older – I’m in my 50s and realize if this happened in my 30s I’d have bounced back faster. But believe there will be more peace and more improvement ahead.
Very similar to the problems I have from statins. It is a real problem when you are a pharmacist who has lost all faith in pharmaceuticals. Today my Father is in the hospital with heart failure after a urinary infection 2 weeks ago. You can guess how I found your site.
Ugh. So sorry about your father. These reactions sure seem to have a genetic component. It wasn’t until I reacted that we realized the collection of strange symptoms my father had at the end of his life – including heart failure – were mostly from a cipro reaction. I would highly recommend looking at http://www.drsinatra.com/best-heart-health-nutrients-to-consider/ for your father. When I started D-ribose I could feel my heart respond within minutes. MitoQ is a much more focused CoQ10.
I also hope you find your path to healing. It can be a slow process and must feel strange if you’ve always thought pharmaceuticals. I’m seeing online and in life quite a few pharmacists who move on to focus on supplements – like Suzy Cohen. I think we have to figure out what our bodies are missing either by genetics or by chemistry we’ve ingested, and then supply what is missing to give it the best chance to heal. There’s room for medicine for sure, but the first thing is to get the body primed to do its own job. I’m pretty sure magnesium is one of the most important components – at least it is for me.
Wishing you strength.
Hi Bronwen, I really would love to talk with you one on one and get some guidance. I am tired of reading stories online and would love to have a conversation with someone who has walked this walk. I need help I too Cipro 3 years a go have bizarre symptoms, Brain fog, severe fatigue, bad costrochantritis and horrible periphathy neuropathy (I can not have clothing touch me it hurts to wear clothes) on my arms and upper chest, Plus I have jaw throat pain severe. May I please contact you and if so how could I ? Many thanks, Desparate to talk.
Hi Susan: Sorry about the delay in responding. I’ve been away from internet on a holiday. I am reluctant to leave my contact number or email publically. However, I think I thought of a way – if you search Bronwen Duncan on Facebook and choose the Bronwen that lists Yukon College and then message me privately – not on the feed, that would connect us out of the public eye.
Hi thank you so much for responding I to do not want to post phone number or email online however really need some guidance. I do not have a Facebook wondering how we can connect I have so many questions
Hi Susan: It is not a good idea for either of us to put private contact info publicly. Facebook is the only option that I can offer. However, you are welcome to ask me questions in this comment section. The bonus is that you also share you also share your questions with others who may have experiences and knowledge beyond mine.
My story is to long and complicated to type I took cipro three years ago for they thought diverticulitis three weeks later I had costrochandrtis if went away then I had my gallbladder removed cause they thought that is what my pain was on my left ab and ribs I am jaded with doctors after the surgery worse my costrochandrtis has been everyday since December 2013 after research they found it was h pylori that was left an pain but something happened in December 2014 within one day my elbows and arms started hurting pain peripheral neuropathy fatigue brain fog set in I have been sick ever since I can not seem to get better how can cipro do this much damage one year and two months later? I recently have been told I have Lyme so I am confused I have been patient and want to heal but do not know how. Are you better? I feel so alone want it over so o don’t know if it cipro or Lyme or both I don’t know how to tell people to heal cause I don’t know how to this is a nightmare everyday I wake up to push my body to continue tired of being sick. I want my health and do not know where to start? What do I do?
Hello Susan- I too suffer very badly from costochondritis after Cipro. I was floxed in 1999 utilisation did not know it at the time . I suffered from the rib pain on and off for many years but after being refloxed 2 years ago it is more or less permanent. The worst part of it is when the sternum hurts as I worry it’s my heart especially as after Cipro I also had some heart rhythm irregularities . I hope that gradually it will get enter and I will have periods free from it as before.
Hi Madge: I know what you mean about the sternum hurting with costochondritis-like symptoms and it is so confusing as it feels like the heart. This last spring I started (gradually) taking way more magnesium and also collagen (from the scales of wild fish) as I figured my connective tissue needed boosting. My costochondritis has improved a whole bunch so wanted to let you know in case it can help you too.
Martin this is Nicole & I would like to say we have been going around & around about this since it was posted by someone.
I have amalgam fillings as I am 65 years old. I was taking ALA which seemed to control how bad my burning was. After everyone getting on this band wagon I stopped my ALA. I then had the worse relapse I have ever had. ( I am just a little over 6 months out ) Not only did my burning come back big time but my tendons were worse again and I had terrible joint pain that was worse than I ever had!!!
I talked this over with my NP and my integrated chemist. My chemist said it is a theory but not proven as most theories, so what was important my burning or a theory? My NP said it is a chelator that can remove mercury from the brain. Too much maybe could cause a problem but we do not take it in those high does. She also said removing the filling at this point would be damaging for a Floxie as that is when the mercury would really release. I would need to wait a few years if I wanted them out.
She also said if it was that strong of a chelator it would be used more than it is. You also need to be taking Cysteine (NAC) and the master Glutathione.
Even though I have fallen into the guestions of some comments that have been on here I will never do it again!!!!
There are too many people that these supplements you see on Bronwen’s page have helped!
Everyone has to do what is best for them but I just learned my lesson the hard way.
Hope this helps!
Whey Power, high quality organic.
Like Bronwen I am also in Canada.
Good luck,
Nicole
Hi Bronwen, it’s great to read your story and know that you’ve recovered well. I’m in the U.K. and wondered if you had any side effects from ALA? The reason I ask is that I have amalgam fillings and I’ve heard that it’s not recommended to supplement ALA if you have this type of filling – do you have amalgam fillings?
Can you also point me in the direction of the Whey Powder you are using.
Many thanks,
Martin
HI Martin. Nicole has answered the question about ALA much better than I can. Alpha Lipioc Acid was one of the supplements I stopped a while ago. Now 2 1/2 years after taking cipro I only take half of the list of supplements I originally did above because I was getting better (up and down), unsure some of them would be great on very long term basis, and it also reduced the substantial cost each month. Some of the supplements I plan to continue indefinitely and one of those is the whey you asked about, which interestingly also has a bit of ALA in it. I chose Progressive Harmonized Protein from a Canadian company as it is made from New Zealand cows (who, in that country, are not fed antibiotics or growth hormones) plus if you look in the fine print it has a number of small amounts of extra helpful things for the body such as Lactoferrin, Colostrum, ALA, flax seed, downy birch, dulse, spirulina, kelp, better gourd, papaya, pineapple. I expect a number of these help digestion. It seemed like unlike many of the whey companies designed to make money on pumping up young men’s muscles, this company was more interested in supplying whey from a health perspective. I expect you could do a google search for New Zealand whey from the UK to find companies that offer something similar in the UK.
Hi Nicole, I agree, I do whatever makes things better too, and I hope I didn’t cause you any undue worry. The worrying does get very tiresome, indeed. I’d be curious to know what your naturopath says about it, and I will ask mine as well next time I see her. One thing I read earlier in my researching is the opinion that it’s high dosage that can be troublesome, but that lower doses are safe, and most of what the naturopaths give are low doses. Meanwhile, I’m glad it helps with your burning, to be sure.
Oh, you’re a big help in general with everything you’ve shared in your story! I came upon that little detail by accident today, and while it’s not conclusive, apparently, I thought it would be worth noting for anyone with old-fashioned fillings who might be taking it.
Many thanks to you 🙂
I have heard that but my Nathuropath has me on RLA and I have amalgam fillings. I will question her about it but I have been taking it for 6 months & do not know if I have mercury brain or not! (: I personally think we worry just a bit too much, know I have!!! Tired of it myself! I am just doing what I feel makes me feel better & the RLA helps with my burning for sure.
Hi Genevieve: The connection between R-Lipoic acid and amalgam fillings is not something I know about. I only took it for a little while, then moved onto other things. Sorry I can’t be of more help with this.
Hi Bronwen,
Received collagen and am trying it out. It comes in such a pretty box, it’s hard not to feel a little happy just looking at it. One thing I wondered about you, and people here in general, is whether you have any amalgam fillings, since many of us do. I was taking R-Lipoic acid for a few weeks, and then discovered that it is not recommended for people who still have amalgam fillings as it can apparently bring mercury to the brain. Do you have any thoughts on that? I do have several big old-fashioned amalgam fillings, so I figured I’d give the R-Lipoic a rest for the time being and double up on Vitamin C. There seem to be varied opinions, but the general gist is always to discourage people from taking R Lipoic who still have the fillings.
I have seen two naturopaths, an integrative MD and a holistic dds and not one ever mentioned this, and all knew I was on a ton of supplements. (I have 3 or 4 amalgams—which my dds wants to remove, but I am stalling)
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. 🙂
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
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.
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.
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?
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
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.
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.
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!
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!
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.
Hi Kelly. I just emailed you. Hope you get it.
Bronwen
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.
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
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?
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.