*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.
For the past while I have been having a lot of scary heart discomfort and I’m not sure about the trigger, but I learned something recently that I wanted to share here for anyone with heart issues: Most dental numbing agents contain epinephrine, which is adrenaline. I never knew that, and anyone with a jumpy heart should probably avoid it, in my opinion. Last December I had a root canal (before I knew that Cipro was the cause of all my woes) and I thought it strange that I was not numbing up the way I always had before. The dentist gave me many shots before I was numb enough to do the work. That night I woke very dramatically, feeling as if I was having heart attack. Looking back, it was as if all that adrenaline in the shots he had given me that hadn’t worked to get me numb was released all at once into my bloodstream. My heart calmed down after about 30 minutes, but what followed was three-plus months of unrelenting dizziness. I avoided the dentist after that. (I only discovered the FQ culprit behind everything after being re-poisoned in May with Avelox and googling, etc) Recently I went for a cleaning because it had been a year since the last one, and I have decay under an old crown on a live tooth. Because I’m so close to my re-poisoning I don’t want to risk any anesthesia or drug or chemical at all, not even Carbocaine, which contains no epinephrine. Most dentists (such as the one I saw) don’t want to drill on a patient without anesthesia, but last week I had a consultation with a holistic dentist here in NYC who is willing. I never thought in my wildest dreams that being told I could have tooth drilling without anesthesia would thrill me, but it did. The dentist was very interested in my flox story and I gave her the FDA warnings that Lisa Bloomquist provided. Like most medical practitioners I’ve seen so far, she knew nothing about the dangers of FQs, but at least she was properly appalled. I’m particularly glad she agreed to this since my heart is doing so many crazy things lately, along with little flash fevers and other new symptoms. This coming week I’m seeing the GP who doubted me completely when I told her in June what I had, in hopes that I can convince her (and the insurance) to allow me a full thyroid panel and other blood tests so I can try to figure out for myself what might be going on. But the happiest thing right now is this: I asked the new holistic dentist if I can bring my kitty with me to the appointment for moral support if it’s very painful. I was kidding, but she said I absolutely can! So I’m going to. My kitty is a shoulder-rider who isn’t getting any outings lately because of my floxing, but she’s coming with me to the dentist and knowing that I can have her with me is a tremendous comfort, along with the facts of the dentist not doubting me and being kind. And even with the panicky feelings around some of the new symptoms that just keep coming, it’s a thousand times better than when I didn’t know what was wrong with me last year while the docs sent me for endless expensive tests that turned up the usual ‘nothing’ that so many of us know too well. What this gave me was a reminder that I should always ask for anything I want from medical people, because sometimes asking yields a surprisingly happy response. 🙂
Not sure why the number code and not my name came up with my above post, but this is Genevieve posting about the dentist and the epinephrine.
So glad you’ve found a receptive practitioner. It is hard to understand all the potential chemical reactions that other drugs might generate in a body which is off balance from reacting to a fluoroquinolone, and it also depends on how the reaction manifested itself in your organs. Many people don’t have heart issues, although you and I have. I remember taking what I thought we be harmless melatonin to sleep better one night and it really made me worse for a few days. That was early on. I don’t know if it would now – 2.5 years later – as I expect I was putting extra chemicals through a struggling liver, which is healthier now. My heart is much improved too. I had a tiny bit of local anesthetic recently (which one I don’t know) and did not seem to react. However, I try to avoid medications, using Turmeric as an anti-inflammatory and medicinal-grade (UMF 10+) manuka honey as a topical antibiotic. Good luck with your dental work!
Hi Bronwen, I’ve had some liver troubles too, which I’m hoping to address. NAC seemed to affect me badly, and my acupuncture/Chinese herbal medicine doc had hoped that would help me. Thank you for the tips, especially manuka honey. Was there anything in particular you found to help your liver?
Yes – liposomal glutathione helped my liver and symptoms immensely. Glutatione is what our liver uses to detox. I expect there are other things too, but this seems to be the most important one. NAC is an amino acid which is a pre-curser to the body making its own glutathione, and Whey powder is also, but when I took NAC, my methylation cycle and liver were so compromised it made no difference and I moved to liposomal glutathione. I looked back over our other conversations as I knew I’d written about this in more detail before, and notice you said you tried it but stopped because of herxing (see our conversations around July 3). I decided to persevere through this, and managed by starting the dose small, feeling awful as toxins started leaving my body but a few weeks later, moving to a much better place. I also think our bodies are better able to handle certain types of help once they’ve worked through some improvement already. I don’t know whether it is worth retrying for you, or whether it is better to do some further research about alternatives outside of my experience.
Thank you for that. I’ve been hoping to be able to be tested for the MTHFR gene mutation, as the Chinese doc thought that may be why it was causing me trouble, and I was afraid of the way the herxing felt, which was too awful. I am very tempted to try the liposomal glutathione, and fingers crossed getting for the blood tests I want of liver, kidneys etc, and I just might go for it. Did you ever find out your status for MTHFR? There are labs online, but for some crazy reason they are illegal for use in the State of NY.
Genevieve, I did have a bad liver attack & it has been a problem. Of course I do get the glut. in my IV & take NAC.
I just has a setback 3 weeks ago that has been worse than ever & my heart is acting up a bit which I am really surprised it took so long as I already had a heart rhythm problem. But my body reaction this time, tendons & burning was the worst but turning around a bit again. These things are scary as we try to clear our bodies but what choice do we have?! I have had adverse reactions to a lot of things since 1st Floxing I got 9 years ago because I did not know I was floxed I just added more poison! Statins etc.!
Now with your liver if you are scared of the glut. you can use milk thistle & your chinese Dr will know of other herbs to try as well.
I was ready to hang up the towel a few days ago but we just have to hang in there!
Wishing you good luck with your treatment.
Nicole
Thank you, Nicole. And I hope you recover from your recent setback very soon.
Thanks Bronwen!
It is good to know I can order chicken out without worry! I have had nothing but antibiotic free food since this happened. I have only been out to eat 3 times in 7 months for fear of food. I was the only person it seems that was happy when Earls decided to serve only antibiotic free meat! I also only eat fresh ocean fish & do not have shellfish. I do not know about Canada but I do know framed fish are antibotic to death & they do use FQ’s in the States. It is nice to know when I do not have a choice I can order Chicken out!!!!
That is just the hard thing for me as I have done everything right. You got me right to a NP & I have stuck to it to the tune of $7,000 at this point between supplements, IV’s & accupuncture. We do not have flouride in our water & if I buy a bottle of water I always look at the flouride count.
The first setback I had we had the glut. up really high so backed it down. This one which is worse that I ever was before is really a mystery. I was stressed over a another health problems that has to be addressed & my burning had got livable & my feet were not bad so I was probably doing too much as I would keep on going after knowing I was tired!
Anyway getting a bit better again, just baby steps. My doc wants me to get a handicap card for the car so I am not walking so much & I am finding that very depressing! ????????????
Hope you have a safe trip down here. I would love to see you but I am sure you will head over to see your daughter.
Thanks again, you have been a great friend in FQ world!
Nicole
What was the way I could contact you on Facebook again? It is not displaying on here any longer
Nicole, I’m wondering how far out you are this time around, I think you’ve mentioned it but I have forgotten. Going for blood tests today, which my GP (who doesn’t believe any of this is possible despite my giving her the new FDA reports) reluctantly gave me a prescription for. I will have to pay for it all myself, but I feel it’s worth it. Then I can at least take the reports to the Chinese herbal doc. They are not allowed to order blood tests, unfortunately. My heart has been acting up a lot too, and it’s very hard to keep weight on, in addition to many other tiresome and scary things. I’m fast becoming an amateur biochemistry enthusiast whether I like it or not. 🙂
Yes, I do want a new GP and she’s dropping my insurance at the end of the year so I’ll have to get one anyway. The healthcare system is a mess right now, though. It’s getting harder and harder. Yes, I will keep on the mag no matter what, thank you for the reminder. I’m sorry for your setbacks, it can be so draining and debilitating, this thing. I force myself to keep studying, as I’m sure you do too. The more I learn the less I feel I know, but I know much more than I did the first time I was floxxed without knowing it, so that’s a good thing at least. It’s very sad the way the doctors are now, I find. That they won’t believe something even if the proof is written before them, nor do they seem to even want to know. There is no diagnostic curiosity at play, or so it seems from my experience. At least the GP I have for now is willing to let me have the blood tests, even though she wrote the script while shaking her head and saying she thought they were a waste of time and that I’ll have to pay for them myself. The neurologist I saw last Spring when they still thought I might have a brain tumor hung up on me in June when I called to ask her if she’d write me a script for a blood test after telling me there was no need “based on her notes.” I wanted to tell her I knew what the culprit was, because I’d been refloxed, and I thought she might be curious to know what it was that ailed me, but she wasn’t. So I feel lucky that ‘ll be able to get the tests, at least. Have you been tested for the MTHFR gene mutation, by chance?
It sure makes you think twice about seeing a doctor about anything anymore!!!
I have not had the MTHER gene test but my dr. does believes the gene has a lot to do with our reactions & that it is hereditary & told me to tell my son not to take a FQ.
He went into a walk in clinic 2 weeks ago for a sinus infection & she gave him cipro. He told her what had happened to me & he would not take it. She said she had never heard of such a thing but handed him another scrip & he had taken to pills before he realized it was still a FQ. The dumb dr gave him levaquin!!!!
They really do not know about FQ’s in Canada as we have NO warnings for them!!! He got right into my NP and got a mag. & glut. IV and I just pray he stays okay as he has a demanding job and two small children. I have never been so mad!!!
I am thinking about doing the 23andme blood test. My NP said she can get into the results & really figure things out that I would not understand. Just so tired of spending money!
That is so true & I am afraid this condition makes you afraid of so many things that a Dr. does not understand!
My Doc is great & is well aware of the damage FQ’s causes but he still does not understand when I tell him I can not take NASIDS or a steroid for the pain but he sits with a laptop & does look everything up at least. He is still is having me take another CPR test next week when the 1st one months ago I did not show inflammatory markers. He does not understand the getting worse parts of this very well, He has ordered me a handicap sticker so must not have a lot of hope for me! ????????????
I am on Facebook under Nicole Reedy in West Vancouver BC Canada
Those handicap stickers can have their advantages. 🙂 I will friend you.
Hello Bronwen, I finally had my MTHFR test done and I have two copies of the C667T gene mutation. Not surprised, actually. Did you manage to get your test as well? The more I read about it the more my head spins, but I’m going to learn all that I can.
Also, do you still take the liposomal glutathione, and is there a brand you would recommend?
Thank you, Bronwen. I’ve been seeing a lot of reference to Ehlers Danlos and wondered about it. I seem to get new symptoms every day, all over. I’m in my fourth month since being re-poisoned and feel incredibly frail and compromised while trying to pretend to be okay as best I can. I’m going to see an orthopedic doctor on Monday to just hopefully get some advice on how to not make my knee worse, as it feels as though it’s coming apart, and my heart races and my skin is thin and it’s all so frightening at times. I thank you for the collagen tip, I take it every day and I don’t want to jinx anything, but I think my eyes have felt more normal since being on it a while. Now that I know I have two copies of the MTHFR mutation I’m trying to figure out a good dosage of methylfolate and methyl B-12, which I’ve been taking in small doses anyway. May I ask what dosage you take of those?
So really need some clarification. I do not understand. I took Cipro 10/2013 3 years ago. For 2013 and through November 2014 I had ONLY the costrochranditis as the only symptom (that started three weeks after Ciprco). Then in December 2014 I had to take Ceftin for infection within two days of this my arms starting hurting so bad and my throat muscles its as a bomb went off. (I do not know if this was herxing) (All of this by the way is on the right side of my body). I now have peripheal neuropathy. When I wear clothes on my arms and mid chest area hurt so muc.. The clothing makes me burn really bad just burn burn and I can feel it my tendons and muscles are weal.. Has anyone had this? I know this is a sign of Lyme. I do not understand how Cipro that I took took 1 year and 2 months prior could cause more break down after that amount of time since last use.. Or is it my Lyme? Is i possible that Cipro can bring up more symptoms 1 year and 2 months later since last use? I need to hear others experiences if this is a possiblilty. My lyme doctor says that Cipro damage is rare. I do not believe her. I do not remember what it is like to wear a cute sweater without pain. Has anyone experienced this? I do not remember what is is like to swallow food without pain. Has anyone had this? I am apprehensive to go forth with the lyme treatment because of the possible damage that has been done from Cipro. I JUST want healing. So let me step back for one minute. In 2015 I could barely get of my couch I literally thought I was dying. I am amazed I am alive today. Most days I thought my body was going to collapse and I was going to die. I am taking a supplement drink (which I would like to share with you all, that I can help you order) this drink has removed almost all of my brain fog and has really helped my fatigue. However the pain of the peripheal neuropathy still exist and well as the costrochranditis. So am reaching out to see if you all have the same symptoms. I know my fit with lyme and Cipro damage maybe I just have both. Maybe my body was compromised from the lyme and then Cipro caused herxing or it caused damage. Just don’t know any more. I have literally have been to so many doctors even naturopaths to no help. I do not know where to turn.
By the way one other question has anyone tried a steroid shot in their ribs for the costrodonchantris. Did it work?