*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.
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
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
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
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?
I am in beautiful Vancouver!
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
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…
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…
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.
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.
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.
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) 🙂
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.
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.
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.
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.
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!!
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.
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
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…