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

*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.