*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
In April 2014, I was prescribed seven days of Ciprofloxacin (2 X 500mg) for a possible urinary infection. At 53, I was in great health, eating very well, going on many vigorous hikes, and taking exercise classes.
If I knew at the beginning of this rather awful adventure what I know now, I am convinced I would not have sustained so much damage. I am also convinced that if I had not taken full control of my own health as it got worse, I would now be on disability. But, one year later, I am mostly recovered, stable as long as take my supplements, and feel 80 to 90% of my past fit self. I am not sure if I will reach complete recovery. That’s OK. I am happy to be able to once again hike for miles, even if I’m not going up big hills with a backpack.
There is an additional sadness in this for me, as I relived some of my father’s suffering. Even though my family eventually (and too late) connected Cipro to my father’s devastating peripheral neuropathy, we had not realized that it also probably contributed to a number of his final health problems, including heart failure. I had forgotten the name of his antibiotic, or I never would have taken it. I guess I’m living proof that Cipro reactions may have a genetic cause.
The first day, my heart pounded loudly when I went for my noon-hour walk. I shrugged it off, as it reminded me of how my heart races during hot flashes. On the fourth day, my jaw got misaligned after eating popcorn and I realized I was unexplainably depressed. On the fifth day, my shoulder collapsed painfully when I put weight on it as I shifted seats in the car, and on the sixth day, when I wrung out a dishcloth, my right wrist tendon hurt excruciatingly. I finally clued in, stopped Cipro a day early, and started online research. What a horrible thing to find out that fluoroquinolone damage can be cumulative and symptoms were likely to grow in number and intensity! And, like so many others who do not have robust DNA damage repair mechanisms, that is exactly what happened to me.
TENDONS, LYMPH GLANDS, HEARBURN, NERVES: During week 1 and 2 (post drug) I had my first “set’ of symptoms. My initial tendon damage worsened to the point I could no longer play the cello, write properly, or open heavy doors without re-damaging the tendons. This was combined with episodes of tingling rushes and numbness running down my arms and into my hands and very occasionally my legs. My arms would feel weak and disconnected, so I would swing them around to make them feel “alive.” My research showed this could be a side effect of swollen tendons manifesting itself as thoratic outlet syndrome, but also reading that Cipro attaches to the GABA A receptors, I realized it might actually be nerve damage. These symptoms lessened within weeks, but did not completely disappear for many months.
I went for a massage and although it felt wonderful, this worsened things within the hour. I now realize it released toxins from my muscles were holding into my blood stream so my body reacted.
Other symptoms included very swollen lymph glands, especially behind my ears and in my armpits. Often, I could not close my jaw properly as the swelling behind my ears threw my jaw slightly out of alignment. This, and some heartburn, also gradually subsided over the next few months.
I feel fortunate that the temporary depression I experienced, while taking the drug, lifted and did not return. I know that alternations in cognitive and emotional states are very common for those that are “floxed.” The life-saving value of fluoroquinolones is due to their ability to permeate every cell in the body, including the brain, which is why, for those who react, it can create incredible damage in any number of organs. My most vulnerable organ was my heart, and this started to take most of my attention…
CHEST PAINS, HEART ARRYTHMIA, HEART POUNDING: The intermittent chest pains, which I had tried not to notice earlier, suddenly worsened at week 2 and worsened again at week 3. My blood pressure went sky high for a day or two and I ended up at the doctor’s office with what felt like a 20-pound weight on my chest, and my heart pounding so loudly I could feel the pulse in my toes. My doctor had known me for decades and agreed I was experiencing a drug reaction. After a few tests provided no enlightenment, she suggested I go to emergency if things got worse, and realizing she did not have the tools to help me, supported my idea of seeing a naturopath. I live in Canada, so do not pay for medical tests, although I do pay for a naturopath. That evening, I drove to emergency, as my heart seemed to be revving out of control. Emergency doctors smirked at my assurance my symptoms were caused by Cipro, and although the tests they chose confirmed non-life-threatening arrhythmia and high blood pressure, there were no other points of concern. I was relieved and frustrated in equal amounts. This is when I decided to start taking control – I bought a blood pressure cuff to monitor my own blood pressure and was pleased to see it soon dropped.
UPPER ABDOMINAL PAIN, UPPER CHEST PAIN, UPPER BACK PAIN, INTERNAL TREMORS, DRY SKIN: Along with my heart symptoms, I started experiencing upper abdominal discomfort, along with upper chest and upper back pressure/tightness/pain that would increase through the day. The upper abdomen pains went away over the next few months and, in retrospect, I think the cause was likely a compromised liver. However, my whole chest circumference continued to feel fragile and the constriction of wearing a bra around the ribs felt damaging. A year later, my best guess is that this is costochondritis (inflammation of rib cartilage) combined with myofascial pain, and I still suffer from it, but less.
At week 3, I started having some “whirring” internal tremors which, although occasional, were disturbing. It felt like electrical synapses were misfiring. These gradually disappeared after month 6.
I also became aware that my skin was extremely dry – that there were some rough scaly patches on my arms and even on my face. Initially, I couldn’t care less, as my other symptoms took precedence, but eventually I bit the end off my CoQ10 (lipid) capsule and put a drop or two in my moisture cream, and this really seemed to help.
GETTING WORSE – HEART AND FATIGUE: Between week 3 and month 6 my heart gradually became worse and fatigue set in, with symptoms worsening through the day. Not only did my heart seem to pound, shaking the whole chest so I could not sleep on my left side or back, but unless I was being slightly active (walking) the beats were WAY out of time, bouncing all over the place, and I had a couple 30 minute periods of tachycardia.
I saw the naturopath and in addition to Omega 3, Vitamin C and D, Calcium/Mag, I started CoQ10, some Magnesium, and B vitamins. I also started some homeopathic UNDA remedies which I later dropped.
CYCLING OF SYMPTOMS: It took a while to realize that all the symptoms went in a 6 to 10 day cycle – from almost not present to overwhelming. This was very confusing to me and health care providers, because each time I improved, I hoped I had healed permanently. One year later, the cycle has faded away.
FOOD AND BOOZE: I’ve always eaten very well, but I wanted to maximize my chances of healing so moved towards a hunter/gatherer diet, eating lots of protein, nuts, vegetables and fruits. But, soon I had to add back whole-grain carbohydrates as I started losing weight. I also discovered that booze actually helped me. I began to dread evenings as symptoms would worsen. But I learned that when I started rocking in pain or worry and/or heart arrhythmia and pounding was at its maximum, one alcoholic drink would not only dull the pain, but actually calm down the symptoms too. It was actually quite miraculous. I know alcohol affects GABA receptors and that Cipro binds to them, so maybe it calmed some form of Cipro overdrive. I don’t know, but I know it helped me when I needed it.
TAKING MORE CONTROL: At month 2, I had a day of reckoning, where I realized my heart was giving out unless I did something! It was frightening realization that I had to count on only myself and yet I was no expert. So, I wrote an email to my friends/family to send me strength and decided I would have become an expert as far as I could. It is interesting to think back on where I was psychologically at that point. I live on my own, and had no-one to either assist me or listen to my worries day to day. I also needed to continue working as I am the sole wage-earner. I have lots of people that love me, but it was hard to reach out to friends and family when you don’t want to worry them, or pressure them with more than they can handle. Besides, how could I ask them to believe what was going on in me, when I could hardly believe it myself, and I did not have the backing of some doctor’s prognosis? I had to be strong. I had to find the compromise between just maintaining forward motion for survival, but also taking full control of my own healing. Some days it felt like I was limping forward like an injured animal not being able to intellectualize what was going on, but just getting through the day so I could go back to sleep to make it go away. But, I knew my only way to heal was to find my own research and cure, and would spend two or three hours a day on the computer, digging past all the worries and hype to scientific studies.
I was determined not to take any other drugs unless I absolutely had to. This means I went against the suggestions of some friends, who advised I go to cardiologists and other specialists, but I did not want to prompt test results that might dictate a cocktail of more pharmaceutical drugs. My experience in emergency taught me not only how the medical system was not attuned to Cipro toxicity, but that I was in no immediate danger – I was not going to have a heart attack. I was convinced Cipro broke one or more chemical reactions in my body by removing core components and I needed to focus on adding back into my system what might have been removed or damaged by Cipro, and I would reconsider tests at the end of whatever healing process I could manage.
My first “aha” moment came when my research discovered a chronic fatigue specialist, Dr. Myhill, who connected symptoms, exactly the same as mine, to mitochondrial failure. I then googled Cipro and mitochondria and discovered that yes, Cipro and other fluoroquinolones cause mitochondrial dysfunction, and subsequent Reactive Oxygen Species (ROS) overproduction which damages DNA, protein, and lipid damage and cellular death. Dr. Myhill said that the heart is 40% by weight mitochondria because it needs to produce a lot of energy, and if the mitochondria cannot work efficiently, it simply cannot pump through enough blood. Chest pain results when energy delivery to the muscles is impaired. There is a switch to anaerobic metabolism, lactic acid is produced and this results in the symptom of angina. She recommended certain supplements to improve mitochondrial energy output which I then found replicated by some forward-thinking cardiologists. I started on D-Ribose, L-Carnitine and already was taking CoQ10 (see the SUPPLEMENT section below). Fifteen minutes after the D-ribose, I felt tingling all through my heart like cells were waking up. And so they were.
CURING THE OXIDATIVE MESS: Although my heart seemed a bit better, the fatigue did not lift. At this point I was bad enough to be on disability as I felt I was doing some damage if I pushed myself past standing up for 10 minutes, walking more than 50 paces, and napped every few hours. I think I was in some form of denial so I could allow myself to simply continue. When I was offered a more interesting job in a different town, I moved. In retrospect, I realize I was not really strong enough.
By the month 3, I was desperate. Through my research I realized that the “vicious cycle” of mitochondrial damage and oxidative stress makes it so that damage is accelerated as time goes on, and even though I was probably helping my heart make energy, there was too much accumulated mess for it to work. I found out that glutathione is the master naturally-occurring antioxidant in the body, and that if you naturally have low glutathione, or it is completely compromised by toxic overload, your body cannot complete the energy-producing methylation cycle properly, or regulate a variety of cell stresses. I read that NAC (N-acetyl-cysteine) is the most important building block of glutathione and so started this as well as quality whey protein powder which is high in all the specific amino acids which are precursors to glutathione production. It didn’t work. I was fortunate to talk to a local natural supplement guru, who explained that if my methylation cycle was actually broken (forced to use an inefficient workaround), I would need to actually take the glutathione itself. He also found me a source of liposomal glutathione, a less expensive alternative to an IV of glutathione, which until recently was the only other format that would ensure absorption. I started it gradually as I read that releasing the toxins from their hiding places in your body can cause what is known as a herxheimer-type reaction, where the body reacts to the rise in mobile toxins by becoming unwell, before it can clear them and get better. I temporarily became really unwell, but I promised myself I would stay the course for two weeks, at which time I definitely started to improve. I continued to persevere and starting month 4, my energy returned and symptoms decreased. Finally!
I started focussing on why I might have had a reaction, taking methylated forms of folate and B12 in order to support a possible MTHFR gene mutation.
EXERCISE: I have always tried to “hike” out my problems. When I was first compromised, I tried to push my body too hard. It seemed there was always strength in the moment, and even though I felt a tenuous warning from within, I did not listen. As with chronic fatigue patients, the effects of overextension are felt with a crash the next day. However, as I gradually improved, I started pushing my body, which used to be very capable, to do what it was supposed to do, hoping to gently stress the mitochondria into better production, without creating more oxidative stress by overextending. At first I followed 10 minutes of an exercise video or took a 10-minute walk every day, but by month 5, I progressed to a one-hour exercise class or a 5km hike.
YAY MAGNESIUM! By the month 9 my fatigue was lifting, but my heart was beating way out of rhythm much of the time. I knew that the magnesium I was taking was minimal, although any more caused diarrhea. It wasn’t until I heard the Floxie Hope podcast with Ruth Young that I realized I needed to force my body to take more magnesium because it is an essential part of transporting electrolytes that regulate heart rhythm. I send away for magnesium threonate because it absorbs so well (avoiding diarrhea) and is especially effective in reaching the mitochondria inside cells, and magnesium oil, which I have been spraying on my skin ever since. Within a couple of weeks, my heart pounding and my arrhythmia was incredibly improved! The mag threnoate made my dreams go incredibly vivid, and as I improved, it seemed to keep me awake at night, so now I only take it in the morning. I stopped taking calcium I had been on for years as it can prevent magnesium absorption and I continued to perfect my mixture of supplements, adding MitoQ, PQQ and R+ Alpha Lipoic Acid (see SUPPLEMENT section below).
Then, I became a little overconfident, allowing my glutathione supplement to tail off. Within a month or so, I started regressing, and realized the cause. Even though my methylation cycle was operating, it still needed an outside source of glutathione to work properly. Instead of more liposomal glutathione, I decided to try NAC and quality whey, and this time, they brought my health up again in a few days. This means my methylation cycle is still compromised, and not crashed – a cause for celebration.
NOW, AT ONE YEAR: Healing is slow, but steady. I figure I am 80-90% better but realize I may always need to continue taking some supplements to maintain optimal health. I am more careful with myself. I nap when I need it, I don’t have more than two drinks, I alternate physical days with non-physical days, I eat mostly whole foods and I will pull away from stress overload. I still have some heart issues such as mild arrhythmia and on days where I overextend, the heart “thumps” a little too loudly. I chose to go for an echocardiogram and it shows my heart has stretched in places: my left atrium has a little dilation and I have mild mitral regurgitation. I don’t know if this is reversible or not, but I’m OK, and will be re-tested. Recently, I started feeling I actually had more energy than I needed when I was walking and this made me feel very joyful. I am walking up to 10 km, and I almost feel ready to try climb a hill or two.
The tendons in my right arm and my shoulders still feel shortened and I baby them a little, but they are not stopping any form of exercise. My muscles, except my heart, feel as strong as they ever were.
I still have upper torso discomfort appear many days, and now the constochondritis seems to also be affecting the cartilage around my trachea. I focus on relaxing, breathing deeply, and it lessens. However, my upper back is tight with muscle knots, so every day I do some stretches and some strength exercises, as keeping active reduces the discomfort. I don’t worry though – I know that I have now given my body everything I can to help it heal almost anything and I believe it is and it will. Patience.
WHAT I WISH I KNEW THEN: I would suggest anyone taking any fluoroquinolone drug also take NAC as studies show it can prevent the resulting oxidative damage. I would also suggest that they take magnesium at a different time of the day to the drug and for a couple of months afterwards, in the best form they can find.
If someone becomes “floxed”, I would suggest they immediately go on supplements for mitochondrial health and liposomal glutathione (see SUPPLEMENTS section below) to see if they could prevent further damage.
FINAL THOUGHTS: I believe we have to stop expecting healthcare providers to be well-versed in the exact area of science our own body problem requires. This is because there is only so much each healthcare provider has the ability to assimilate, especially with internet information explosion. The way western medicine is set up, GPs are overwhelmed, trying to filter out who they should forward to a specialist, and specialists are more than likely to be only investigating one isolated part of the body, unlikely to piece together the systemic puzzle. Even the health care providers that do view the whole body, such as naturopaths, functional specialists, or doctors of diseases such as chronic fatigue, are not always able to benefit from each other’s insight.
Since the middle of the last century, our western society has been brain-washed into trusting science implicitly. But, science is an imprecise art. Just because something is discovered and given a name, does not mean its mechanism is understood. So much cannot yet be detected. But, nevertheless, the majority of our society expects a “scientific” drug to cure their every little problem. Very unfortunately, this has given the pharmaceutical industry almost infinite control to supply hope in bottles, whether it is effective or damaging. Even if science may strive to better our health, pharmaceutical companies strive to better their profits. And doctors, who we count on, have no choice but to rely on regulators persuaded by this multi-billion dollar pharmaceutical industry.
As drug consumers, we also need to realize drugs and even some “natural” cures work by shifting our body chemistry. Sometimes there is a miraculous cure, but often, the consequence of the shift is not considered. For instance, Acetaminophen reduces intracellular glutathione levels, which is also essential to remove toxins from your body.
We need to help facilitate information exchange between doctors, patients, and researchers. It is hard to question doctors. But we are each a specialist in observing our own bodies, and if our own precious health or life is compromised, we have a huge incentive to pull together research which might be valuable to all. I encourage others who have been “floxed” to document their symptoms, research, and cures in a way that is accessible to the medical community. It gives credibility to walk into a doctor’s office with a report, even if you are the author, and also facilitates the gathering of data for studies. I started my report in order to fulfill the “tell it on your own words” needs of the University of California, San Diego, School of Medicine “Fluoroquinolone Effects Study” (www.fqstudy.info) and then used it for Health Canada Adverse Reaction reporting, and after seeing my report, geneticists in British Columbia, where I live, referred me to be part of a University of BC study on Adverse Drug Reactions.
I have conducted over 400 hours of research on my symptoms and Cipro. On this Floxie Hope website, Lisa has gathered extensive of resources, so I see little point in listing my own. However, I’d like to mention one more I stumbled upon recently as it gathers tons of research about MITOCHONDRIA and how they work and what to do when they don’t in a very comprehensive and easy-to-read way. http://www.knowmitochondria.com/. The author, Lee Know, includes a section on why mitochondrial damage causes each symptom, what supplements are indicated, and why. Note: Although the author has not listed fluoroquinolones in the long table he supplies in his section on “Medication induced mitochondrial damage and disease,” I have been in contact with him and he is in absolute agreement.
I’ve been fascinated by what I’ve discovered, but because it is not mainstream, I’ve found I need to be careful when discussing it with those who are invested in traditional medical solutions. I’ve discovered energy production by the mitochondria is a foundation for health and well-being, and necessary for physical strength, stamina and even consciousness. This means that mitochondrial health is vital to every organ and body function and nurturing this process may in fact allow each our organs the best chance to heal their own imbalances. Compromised mitochondrial function is now seen as one of the leading causes of a wide range of seemingly unconnected degenerative diseases such as chronic fatigue syndrome, depression, Alzheimer’s, Parkinson’s, Huntington’s, fibromyalgia, cardiovascular disease, type 2 diabetes, mitochondrial disease, infertility, some eye and hearing-related diseases, cancer, autism and more. And it should also be no surprise that a drug that compromises mitochondria, such as Cipro, is beginning to be implemented in actually prompting all the above listed diseases.
I’ve also discovered that each of our genetic makeup predisposes us to a differing set of set of potential ailments and these may or may not be realized. We may ride out these instabilities without symptoms, or they may be triggered by life, by stress, accumulated toxins, or by, in the instance of Cipro, an imposed chemical imbalance. I can’t help wondering if all the accumulated toxins from food additives, drugs, pesticides, and a huge number of industrial contaminants are shifting the point of balance in each of us closer to the tipping point. According to Lee Know “the field of mitochondrial medicine is exploding, with over 200 to 300 related studies been published each week.” It is too bad there is not an adequate mechanism for this information to reach the frontline healthcare providers.
I’m not yet sure what genetic tendency Cipro might have triggered in me – although I believe it is some ingredient in methylation, where the cell’s mitochondria DNA takes raw chemistry and turns it into energy. It could be that I have a genetic tendency to not metabolize folate well (MTHFR gene) or make glutathione efficiently. Or, it may be that I had already reduced the magnesium in my body to such a low level through the use of year so heavy-duty calcium supplements because extra calcium washes away magnesium. I have some genetic testing booked. I’m not sure if it will find what kind of strange thing happened to my body, but I’m just pleased my experience has been recorded to help build the body of science. And I’ve found one advantage: all these supplements have improved my brain function – I feel it works as well as it did when I was in my 20’s!
SUPPLEMENTS:
To support mitochondrial health – essential:
- D-ribose – the raw energy every living thing makes in our cells – New Roots makes it at a reasonable price
- L-Carnitine – I take both acetyl-L-carnitine and L-carnitine, because the first is best for your brain/nerves and the second for your heart, but either will do (reasonably priced)
- CoQ10 – this can be expensive because you need top quality. I use a Thorne Q-best which is oil-based
To support mitochondrial health – good:
- MitoQ – only one source, from New Zealand and expensive. But it is COQ10 altered to enter mitochondria more efficiently, so you can substitute it for some/all of above CoQ10
- PQQ – a moderately-priced newish B vitamin that may help mitochondria replicate
- R+ Alpha Lipoic Acid – moderately priced. Be sure you get the R+ version
To support oxidative mess:
- Liposomal glutathione (you could use IV gluthione as well) -this is if your body is quite compromised. Other forms don’t absorb. Expensive but well worth it.
- NAC (N-acetyl-cysteine) – If you’re not as compromised but need some detox. It is a glutathione precursor
- Whey protein – only use high quality, from cows raised without antibiotics! Contains all glutathione precursor amino acids
Additional oxidative stress help:
- Omega 3
- Vitamin C
- (Vitamin E)
Other essential supplements
- D3
- Magnesium – ESSENTIAL! Cipro robs you of this. Magnesium threonate is easily and quickly absorbed into the mitochondria and brain. Magnesium oil is also quickly absorbed. Magnesium bisglycinate is excellent but did not work well for me
To support a body that MAY have been compromised by the MTHFR gene problems:
- Methylated Folate (L-5-MTHR) and Methylated B12 (Methylcobalamin) – only a few companies make the methylated versions of these B vitamins. Ideally in a form with other B vitamins in a top quality B complex such as Thorne Stress B or AOR Advanced B Complex.
To support absorption and processing of everything:
- Probiotics
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Hi L, I have been slowly having my amalgam fillings removed by a holistic dentist who does it very carefully. If you do remove them, be sure to do it that way. As for the supplements, I think there is a variety of factors to consider. I have a double MTHFR gene mutation that makes it hard for me to filter heavy metals and toxins, etc, so I take extra caution with some supplements, including alpha lipoic acid and glutathione. You might want to have the MTHFR test done, which you can do with a blood test. Knowing my result has helped me to better understand what to avoid or be careful with, diet and supplement-wise. Doctors and dentists I’ve seen, even ‘good’ ones, seem to know very little about supplements, I notice. But one integrative doctor I saw did know about being careful with alpha lipoic acid if one has amalgams. The most helpful supplements for me right now are magnesium, ubiquionol CoQ10, Buffered vitamin C and vitamin D3. And because I have the gene mutation, I also take methly B12 and methyl folate supplements to help with my detoxing.
Hi L, Bronwen & Genevieve,
So happy to see how well you are L and how much glut helped you as it saved me from the liver damage I was told it would take over a year to maybe recovery from in a few months. Not only on my blood work but the ultrasound of my liver that had been a crinkled mess! I also had no problem with ALA. I really believe the mag. has done so much as well.
The most important thing is to have a good positive frame of mind and not let anything or anyone put you in fear!!!!
Congrats on doing so well L and Genevieve you know what you mean to me!
And Bronwen, you are the heart and soul of using your intelligence and research to help others along the way. So happy things are looking great for you. You deserve it for bearing the Yukon if nothing else! Lol
Hugs,
Nicole
What a veritable treatise !
I am overjoyed with hope that I won’t have to go through what you’ve been going through. I’m almost 67, and for most of my life have turned to herbs & nutrition, fresh food, juicing, fasting for health, etc, but the last ten years I lost my vigilance. I had a huge amount of stress, and lost my footing.
So with recurring annual mystery “flu’s”
I wound up taking a lot of antibiotics.
Yesterday I was given Levaquin- I took the 2nd pill tonite just before finding your incredibly enlightening information.
Needless to say, within 15 minutes I had gulped down NAC, magnesium, and even calcium, because I read it blocks the “flox” .
Unfortunately I also read that Vit C potentiates most antibiotics, and I was going for 8- 10,000 today before pill time, to feel like I was ok to not take it.
So I guess more magnesium is in order.
And I was 25 years a licensed health care provider, can you believe it!
I felt like herbs stopped working on me, which doesn’t really make sense..
I’ve mostly been using homeopathy but now after reading your in depth study, I feel I have to stay true to my original credo.
I can’t find the words to thank you enough for publishing your research to the public forum.
One of my teachers is a naturopath if significant renown, in Vancouver.
Perhaps you are there.
Thank you for the responses, and votes of confidence, Bronwen and Nicole!
My invisible friends ! What a relief , that’s over with. Two days ago had my first IV Myer’s
w/Glutathione which was relaxing and pleasant, and may do again but perhaps I was
expecting more results. Or maybe all the nutrient got sucked into the black holes of my
dehydrated, degraded cellular matrix. . . Im going to stock up on Bronwen’s supp list.
Now that I know about “floxes” I will be informing all doctors I see, and plan on also mentioning it to our local pharmacist. Its so frightening that they dont know these things!
Especially in the ER !!! (Nicole!)
But Im wondering if there are any “good” antibiotics, if I need them ? The “Z-pack” is prescribed a lot but doesn’t seem particularly efficacious. After I stopped the Levaquin, I took to putting straight Oregano Oil onto the back of my throat + upper palate right on the area that felt like the origin of the problem, it burned but it also put the fire out.
Last year I had the same weird throat/neck/sinus thing, and was given Cefdinir, which did the job and no side-effects, for the record.
Thanks again, and Good will to all.
Bronwen,
Did you take magnesium threonate and magnesium malate on the same day? I just received the magnesium threonate, and the dosage is thee capsules (144 mg. total) daily which I started two days ago. Before I started the magnesium threonate, I was taking 425 mg. of magnesium malate. I don’t take both of them. I think you said you take 500 mg. of magnesium daily. Do you take both malate and threonate daily as it looks like you like both of them and it would seem in order to 500 mg. daily you would need something besides the magnesium threonate?
I am also going to try the NAC. Did you take that with the whey protein or separately?
I took liposomal glutathione for a couple of years and just forgot to order it a few months ago. So I wasn’t taking it when I took the Levaquin a couple of months ago. I had no problems at all with the glutathione and I have amalgam fillings. It could be different now that I had a reaction to Levaquin, but I would like to see if the NAC and whey protein are helpful first.
Thanks much for sharing what helped you on your journey, your positive attitude, and glad you are doing so well!
Deb
Bronwen,
I saw where you took the TruMarine collagen–is that the collagen that helped? I went to their website but would need to register to get more information. I believe it has amino acids. Did you take that while you took the protein powder since it has amino acids also? Do you remember the approximate cost of the TruMarine and how long you took it and how did it help you?
I also saw where you took a progressive harmonized protein from a Canadian company. Is there a brand in the U.S. that you would recommend?
Also, at what point in your recovery did you decide you needed the iodine? And what brand did you use and how did you work up slowly?
How did you keep your spirits up–trying all these supplements can be overwhelming?
Sorry for so many questions but thanks again!
Deb
Hi Bronwen,
Thanks for putting it all together and providing all this information. Just going to share my floxed story briefly (if I may). I was ‘floxed’ close to three months ago and for about two months, I was in a wheelchair/complete bedrest. Took Cipro 500×3 and that was it. The first pill caused nausea/vomiting, the second sent a heat wave down my legs and to the Achilles, the third send heat wave/excruciating pain down my lower back. The pharmacist had no clue but I stopped it. For about a month, I went through sooooo many things/feelings/pains/sensations/cramping/spasms/crazy heart pounding/blurry eyes/heat waves/ringing etc etc etc…and that all of the body organs were involved. The whole experience was so overwhelming and so much was happening that I was hard to even remember what was happening/timeline.Went through ER many times (in Ontario), and got no help at all.
Finally, it occurred to me that I should turn to the internet and in a week or two on being internet, I stumbled upon your story (3-4 weeks ago from now). I am so glad that I did. You have done a tremendously good job of putting it all together so succinctly that it really helps. Of course, I did my own ‘research’ as well, as I think all floxies should do anyway but I have followed your ‘protocol’ and for me it worked.
Nonetheless, you saved me so much of my time and especially when I was in the ‘thick of things’. I am not still out at all, but a bit better. I still can’t use restroom at night as I have to massage my legs, slowly get off the bed to my office chair that I use as a wheelchair………
The biggest problem for me is my inability to walk. For weeks now, I felt like I am standing on thousands of needle tips (won’t share more….).
On a positive note, I have started taking a few steps very carefully after placing gel pads under my feet. My legs were severely cramped from hip down because they kept spasming for a week and nobody did a thing. I believe that have done the ‘damage’, however, the magnesium took most of it away almost immediately.
Now, I have bad cramps and of course, my heels are extremely tender and I can’t finish a full step. As soon as I stand up, I ‘feel’ that my muscles pull on my tendons, cramps, and like swollen from inside (cant see much swelling outside though, its a feeling) I have to keep my heels to the grown and walk flat. Even my hips are messed up and constant sitting did more damage. Visiting a naturopath and he is suggesting IV glutathione. I have amalgam fillings and scared about that.
However, the purpose of this comment is to first thank you so much!!!!(I have read your story over and over in those days when I turned to the internet because the supplements in your story gave me a start, a roadmap and I can’t thank you enough for it).
Second, I have always been curious to know the following: the dosage of each of those supplements you took per day, the length of time you used them (even approximation), how did you space them out throughout the day, what more did you find out with time (in terms of should or shouldn’t have done when you look back, if anything). I did read in the previous comments on your post that you plan to keep taking some like whey protein (which makes sense) but I was curious about your initial scheduling, spacing, dosage etc.
Please see if you can recall it. It would help to see what worked for you as I might be doing too much or too little. I try to stay close to recommended dosages on the labels. I kept wondering about it when I had no capacity to make a comment in the previous weeks, but now I can.
(Again, thank you. Please do know that there are perhaps more like me out there, reading your posts laying in their beds unable to comment (or may not comment) but immensely appreciate your contribution. Not to mention, thanks to all the ‘floxies’ out there for sharing their experiences, we the newer floxies get tips from all previous floxies sharing their human experiences and see what may or may not work for each and everybody).
I went through the same thing as you. I thought my doctor is trying to kill me she prescribed coprocessor for 10 days 2000 mg a day I was in emergency five times. I think this is how they make their money
Hello Bronwen, from where do you order your MitoQ? I want to get a very good one, but I’m not sure. Thank you!
Hi Bronwen,
I get the liquid liposomal glutathione (by ReadiSorb) and work up to about a teaspoon a day beginning with one drop and increasing by one drop a day until I get a teaspoon. Did you ever try the liquid and if so what were your thoughts? It looks like you used the capsules. What brand capsules did you use? Thanks.
Deb
Hello Browen. Im having mostly tendon and joint pains and also twitching all over my body.. im not really sure what supplements are helping ..any suggestions?
Hi Bronwen,
When you took the liposomal glutathione at first you said you were really unwell. Did your current symptoms increase or did you get new ones or both? Thanks again. Deb
Hi Bronwen,
Did you have the genetic testing done? If so, did it help? I am thinking about 23andme and letting someone analyze it. I am having some anxiety reactions to supplements (iron, turmeric) that I had no problem with before FQ toxicity. Thanks!
Bronwen.,
Thanks much for your information and experience!!!
Just for interest on the genetic questioning.
I just touched base with a 1st cousin I had not talked to in 40 years. She was floxed by Levaquin!
My doctor does believe in a genetic connection and told me to warn my son to never take a fluoroquinolone.
I found my cousin’s situation interesting!
threw
Bronwen and L,
I have a scratchy throat today and I’m petrified of taking a pharmaceutical antibiotic. I am thinking about oil of oregano or alchornea. Do you all have any suggestions?
L
Do you just put the olive oil under your tongue too, and if so how much? Thanks!!
I was recently on Cipro due to a UTI. I took the full weeks worth of pills then a 1 1/2 weeks ago, I can no longer sleep on my left side without feeling like the muscle was detaching. Then my thigh, calf, foot on both legs starting to hurt. I started googling anything I could think of; until I started researching the medication. I so angry about this because I just started to feel relief from left thigh pain from Zoloft. Yeah, that med causes ridged muscle pain as well. Most common area of pain is the thigh. I’m angry at my Dr. for doing this. Why perscribe something when detached muscle, tendons can occure? From now on I will not take anything unless I research it first.
I found this website just the other day and so I’m just on my journey towards restoring my health. Your experiences sound like mine and I pray I experience the changes as many of you have. I just received MotherEarth liquid magnesium and will give that a go while giving other suggestions a try. Any suggestions on how much to build up to? I’m currently just using a 1/2 teaspoon daily.
Thank you all for sharing your stories. I no longer feel like I’m going crazy with this issue.
Hello Bronwen.
First I do not speak English and this article is written by a translator. please understand.
I am a seongman living in Korea.
I eat cipro for a month and have side effects, and I am looking for help.
What problem did Bronwen have with his heart?
What was the name?)
Is your heart problem treated without medication?
Please tell me how to treat without medication.
There is a difficulty in seeing and understanding your writing by translator.
Thank you for your detailed reply.
Thanks Bronwen.