Tag Archives: supplements

Researching Cures for Fluoroquinolone Toxicity

Several people have recently asked me if I know of anyone who is researching cures for fluoroquinolone toxicity. The short answer is, no, unfortunately, I don’t know of any individuals, institutions, or organizations that are working to find a cure for fluoroquinolone toxicity.

The longer answer is a bit more complex and nuanced.

In order to get doctors and scientists to do research into curing fluoroquinolone toxicity, fluoroquinolone toxicity first has to be recognized. In the five years that I have been involved with the “floxie” community, we have come a long way in getting fluoroquinolone toxicity recognized, and the 2016 announcement from the FDA that the fluoroquinolone warning labels are going to be changed to note that their risks outweigh their benefits for many common infections is a HUGE step in the right direction. The thousands of people who have shared their fluoroquinolone toxicity stories on social media, in the news media, and who have reported their reaction to the FDA, have all helped to get people to recognize that fluoroquinolone toxicity is real, and that it’s a multi-symptom, often chronic, sometimes disabling, syndrome. Recognition that the problem exists is a necessary first step, and we are definitely making progress in getting fluoroquinolone toxicity recognized.

After recognition of the problem, scientists and doctors must figure out the mechanism through which fluoroquinolones cause damage before they can start looking for a cure. This, unfortunately, is another big roadblock. There are more than 200 journal articles about the effects of fluoroquinolones on the Links & Resources page of this site. These journal articles note that fluoroquinolones damage mitochondrial DNA, downgrade GABA, deplete magnesium and iron, cause liver and kidney damage, increase oxidative stress, deplete antioxidants, disrupt the endocrine system, activate mast cells, and more. (These possibilities are discussed in more depth in the post, What is Fluoroquinolone Toxicity?) There are so many ways in which fluoroquinolones cause damage, that it is difficult to determine where to start looking for a solution. The hypothesis–fluoroquinolones damage EVERYTHING–isn’t particularly testable or useful, even if it is true. Perhaps though, a cure that focuses on one of the systems that fluoroquinolones damage can help some (maybe most) people through fluoroquinolone toxicity.

There are people and organizations that are focusing on finding cures for some aspect of fluoroquinolone toxicity. For example, there are many companies that are trying to improve mitochondrial function through supplements and diets. MitoQ, K-PAX, Bulletproof, and many other supplement companies have mitochondrial support products, and doctor Terry Wahls notes the importance of mitochondrial health in The Wahls Protocol. People who are searching for a cure for ME/CFS, fibromyalgia, autoimmune diseases, autism, neurodegenerative diseases, and congenital mitochondrial diseases are focusing on mitochondria, and their findings may help floxies too. Additionally, supplements, diets, exercises, and other methods that support vagus nerve function may help floxies as well as the people who are suffering from POTS, autoimmune diseases, mast cell activation, histamine intolerance, and other forms of autonomic nervous system dysfunction. People who are going through benzodiazepine withdrawal know a lot about downgraded GABA neurotransmitters, and perhaps the information that they have can help floxies to deal with the GABA aspects of fluoroquinolone toxicity. Also, things that help people to deal with diabetes-induced peripheral neuropathy may also help people with fluoroquinolone-induced peripheral neuropathy. The makers of these supplements, diets, etc. aren’t focusing on fluoroquinolone toxicity, but in focusing on other diseases that are similar to fluoroquinolone toxicity, they may stumble on answers for floxies as well. I suspect that a cure for fluoroquinolone toxicity will come through people looking for cures for other, more widely recognized and accepted, diseases. It would be nice if concerted effort was given to fluoroquinolone toxicity specifically, but if a cure comes via research into another disease, that’s fine too.

TOL19-001/Cicatendon for Tendon Repair

The only study I’ve seen that focused on repairing damage done by fluoroquinolones is TOL19-001 reduces inflammation and MMP expression in monolayer cultures of tendon cells. It’s an interesting study that I highly recommend to all my floxed friends. Yes, it is a study that is related to the company that produces the supplement studied, so it’s not without bias, but it’s interesting and relevant none-the-less. The article focuses on fluoroquinolone-induced tendon destruction, which is one of the most well-documented effects of fluoroquinolones. It goes over a mechanism through which fluoroquinolones cause tendon destruction–

“This family of drugs (fluoroquinolones) is, indeed, known to induce tendon lesions in vivo [33, 34, 35, 36, 37, 38, 39, 40] by causing matrix disruption, inflammation, and degenerative changes of tenocytes [37, 41]. In this study, we showed that CIP (ciprofloxacin) affects tendon cells, including inhibition of cell proliferation (data not shown), increased expression of p65 NFkB subunits and MMPs (at least at mRNA level).”

It also is noted that:

“Here, we propose that the association of spirulina, glucosamine sulfate, ginseng, selenium, sillicium, iron, vitamin E and zinc (TOL19-001, marketed as Cicatendon®, LABRHA Laboratory, Lyon, France) may have a beneficial effect on tendon healing and repair.”

The article goes over a lot of technical information about MMPs and how the TOL19-001/Cicatendon and its ingredients may help to repair fluoroquinolone-damaged tendons, and, again, I recommend that you all read it.

I have only heard from one friend who has tried the TOL19-001/Cicatendon, and she reported that it helped (but I wouldn’t say “cured”) her. I have not personally tried TOL19-001/Cicatendon, but I have tried many of its ingredients as individual supplements, and many of them helped me through fluoroquinolone toxicity.

TOL19-001/Cicatendon certainly seems promising for tendon repair, even if it doesn’t address the other issues having to do with fluoroquinolone toxicity. I don’t think that we can call it a “cure” but perhaps it is progress. At the very least, it is a study that looked at repairing the damage caused by fluoroquinolones, and I would certainly call THAT progress.

I hope that more supplement companies take a look at fluoroquinolones, and research how their products may help to repair some of the damage done by fluoroquinolones. Though independent research from academics is perceived more positively than research sponsored by supplement companies, I think that supplement companies are more likely to be willing and able to invest in fluoroquinolone toxicity studies than universities currently are, and I’m grateful to any individual or institution that is looking for a cure for this horrible toxicity syndrome.

One more thing…

Not to toot my own horn, but floxiehope.com focuses on healing, and finding a cure, for fluoroquinolone toxicity. The recovery stories don’t contain any “magic bullets,” but they do contain methods for recovery that many people have used. I think that the information in the recovery stories is valuable and useful. Though there isn’t a “cure” at this time, there is recovery, and I think that realizing that is a big step in the right direction.

Also, The Quinolone Vigilance Foundation (QVF) is working with scientists to research fluoroquinolone toxicity, and a cure may come from that. Their work is greatly appreciated!

And, The Fluoroquinolone Toxicity Solution, is a good guide that has helped many people.

We all wish that we had a magic bullet cure. Maybe one day. For right now, we can use what we have, and hope for more research to come.

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Mitigating Fluoroquinolone Damage

What if a loved one must take a fluoroquinolone because it is the only option available to save their life? How do they avoid getting “floxed” and experiencing the devastation that fluoroquinolones have brought to too many lives?

Undeniably, there is a range of reactions to fluoroquinolones – from people not reacting badly at all, to people being permanently disabled and in excruciating pain, and everything in between. If a loved one must take a fluoroquinolone because it is the only viable option, is there any way to push them toward the “not hurt” end of the spectrum?

Who Gets Floxed?

At this time, no one knows what makes someone susceptible to getting “floxed.” No one knows why some people tolerate fluoroquionlones well but other people don’t. No one knows why an individual can tolerate fluoroquinolones fine at one time, but have a horrible reaction another time. No one knows what genetic predispositions contribute to some people getting hurt by fluoroquionlones.

The epidemiologists say that the risk of fluoroquinolone-induced tendon ruptures is higher in those over the age of 60. However, there are many “floxies” under the age of 60, and many of them suffer from tendon ruptures and other musculoskeletal problems.

It is hypothesized in, “Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?” that, “anyone with any underlying genetic predisposition, or possibly harboring a subclinical, latent, or silent endocrinopathy might be ‘pushed over the edge’ into full blown clinical pathology” by fluoroquinolones. But I have a friend who is over the age of 60 and who has thyroid problems, as well as osteoporosis, who recently took a course of Cipro and was fine afterward. I saw her yesterday and she is doing well. I would have thought that she would have been predisposed toward an adverse reaction… but she wasn’t.

As a strong and athletic 32 year old who had no history of illness, I certainly didn’t think that I was predisposed to having an adverse reaction to Cipro, but it happened. Cipro made me sick for a while.

There seems to be a certain amount of “Russian Roulette” going on when one takes a fluoroquinolone. There aren’t any tests to determine who will react poorly to fluoroquinolones, and even known risk factors only sometimes make a difference. Some people seem to get lucky, while others get very, very unlucky. I realize that attributing adverse reactions to bad luck and “Russian Roulette” is a frustrating non-answer, but, unfortunately, that’s where we’re at right now – the land of frustrating non-answers. Welcome to being a floxie.

Despite the seeming randomness of adverse reactions, there is sufficient evidence that people who are over the age of 60, athletes, those who have a history of psychiatric illness, those with a history of benzodiazepine withdrawal, people who regularly use NSAIDs, people using corticosteroids, people who have an existing autoimmune or endocrine disorders, those who are immunocompromised, and people who have a mitochondrial disorder (in any of its manifestations, including ME/CFS and fibromyalgia) should avoid fluoroquinolones if at all possible. (More about this can be found in the post, “Don’t Take Cipro, Levaquin or Avelox If….” on Hormones Matter.)

When it’s the Only Option

Given that few people think that an adverse drug reaction will happen to them, and that antibiotic resistance is reducing the number of safe antibiotics available to treat many infections, many people are stuck with fluoroquinolones being the only option available to them.

If this is the situation for you (yes, I do realize that many/most floxies would rather die than take a fluoroquinolone again, but that’s not the case for everyone) or a loved one, is there anything that can be done to mitigate the damage done by the drug?

Maybe.

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Mitigating Fluoroquinolone Damage

Studies have noted that magnesium and vitamin E can mitigate some of the damage done by fluoroquinolones. In, Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population, it is noted that:

“Pfister et al [25] studied the effects of oral vitamin E (tocopherol) and magnesium supplementation on ciprofloxacin-associated chondrotoxicity. Juvenile rats were divided into 4 groups: those fed a normal diet, a vitamin E– enriched diet, a magnesium-enriched diet, or a diet enriched with both vitamin E and magnesium. These diets were initiated 10 days before the rats were given ciprofloxacin. Two days after fluoroquinolone exposure, cartilage samples from the knee joints were histologically examined, and cartilage and plasma concentrations of magnesium, calcium, and vitamin E were measured. Fluoroquinolone-associated cartilage changes were observed in all groups, but the supplemented groups showed significantly less change, with the magnesium and vitamin E combination group demonstrating the least change. Both plasma and cartilage concentrations of magnesium and tocopherol were significantly higher in the supplemented groups than in the animals that received the normal diet, which supports the potential role of magnesium deficiency in the pathogenesis of fluoroquinolone-associated chondrotoxicity.”

Does that mean that magnesium and vitamin E should be taken along with fluoroquinolones to mitigate damage? Maybe. It should be noted that magnesium inhibits fluoroquinolones both for better and for worse, and that the magnesium may decrease the ability of the FQ to fight the bacterial infection.

Additionally, it is noted in “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells,” that:

“Mice treated with clinically relevant doses of bactericidal antibiotics similarly showed signs of oxidative damage in blood tests, tissue analysis, and gene expression studies. This ROS-mediated damage could be reversed by the powerful antioxidant N-acetyl-l-cysteine (NAC) without disrupting the bacteria-killing properties of the antibiotics.”

Since NAC doesn’t disrupt the bacteria-killing properties of the antibiotics, it’s a better bet (IMO).

It is also noted in Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population, that:

“A mitochondrial-targeted form of ubiquinone (MitoQ) demonstrated a larger protective effect than did untargeted ubiquinone. Oxidative stress frequently occurs in the mitochondria [22], and fluoroquinolone-induced oxidative damage to mitochondria in tenocytes and chondrocytes has been reported [26].”

Some “floxies” have found MitoQ to be helpful in healing fluoroquinolone-induced damage. Perhaps it can also prevent the damage from occurring.

If a loved one of mine had to take a fluoroquinolone, I would try to get him or her to load up on magnesium before-hand, and I would try to get vitamin E, NAC, and MitoQ into him/her while the FQ was being administered.

I certainly wouldn’t claim to know for sure that they would be safer while taking those antioxidants, but it’s worth a try.

Russian Roulette

People should be aware of the dangers of fluoroquinolones, and they should know that there is a certain amount of Russian Roulette that is being played with every pill administered. For better or for worse, I don’t think that people really understand fluoroquinolone toxicity until it happens to them. As scary as it is for those of us who have been hurt by fluoroquinolones to stand by and watch while our loved ones take these pills, some of us will have to do just that at some point. Maybe some of the fluoroquinolone-induced damage can be mitigated by the supplements mentioned above. I hope so.

 

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Lisa’s Update

One Year Update Pic

I wrote my recovery story about a year ago. A lot changes in a year, so I thought I’d write an update.

I was pretty well recovered when I wrote my story. In most areas, I was about 95% of my pre-flox capacity. I could do most of the physical and mental things that I needed and wanted to do to with relative ease. I could walk, hike, do pilates, swim, dance, work, have good conversations with my friends, maintain relationships, etc. I was healthy enough and life was good. I would have felt fine about staying in the condition that I was a year ago indefinitely.

It has been a nice surprise that I have continued to get better. Little things have improved/gone back to how they were pre-flox.

I started sweating again. I was kind of enjoying not sweating, but it’s good to have that part of my autonomic nervous system working normally again.

I stopped being cold all the time. I had a hard time feeling warm for a long time after taking cipro. Sometime in the last year my body has gone back to its normal – being “hot blooded” (I’m Swedish).

I feel like I felt pre-flox when drinking coffee and alcohol. It’s difficult for me to describe how I felt different after having caffeine or alcohol while I was sick – but it just felt different – and now it feels normal again.

I went through a period of nausea in the last year. For a couple of months, I couldn’t eat without feeling nauseous. I’m not sure if the nausea was because of a break-up that I went through right before it started (lots of people don’t eat for a while after a break-up), if it was a floxing symptom, or if it was a combination – my digestive tract shuts down now when I go through a period of stress. Whatever the source, it went away when I started supplementing hydrochloric acid (HCL – stomach acid).

I also had some issues with feeling a tightness in my chest that went away when I started supplementing HCL.

My mental capacity is as good as it was before I got floxed. It may even be better than it was pre-flox. I had no interest in biochem before I started researching how fluoroquinolones work – now I read biochem articles for fun, and they’re making me smarter. Also, my writing has gotten better – which is nice.

My energy, endurance, flexibility and strength have continued to improve. It’s difficult to tell if I am capable of as much physical activity now as I was before I got floxed for a couple of reasons. First, I am a bit out of shape. I have an office job so I sit for 8 hours a day. That’s not good for anyone’s physical fitness. Getting floxed certainly didn’t help, as it left me completely sedentary for a while and semi-sedentary for a while after that. Second, I was in really excellent physical condition before I got floxed. I’m not sure how fair it is to compare myself to how I was 2.5-3.5 years ago because I was really fit at that point in my life. Anyhow, those are details. My point is that I’m doing well physically. I can keep up with my boyfriend (who has never touched a fluoroquinolone) while hiking, swimming, etc.

I still struggle a bit with my motivation. I felt like cipro stole my “give a damn.” I’m very passionate about exposing the dangers of fluoroquinolones, and about helping people through fluoroquinolone toxicity, but I still struggle to “give a damn” about other areas of my life. It’s getting better though.

My level of fearfulness has subsided over the last year. (It had actually improved tremendously a year ago when I wrote my story – it was horrible when I first got floxed – I was terrified.) It has taken a long time for me to convince myself that this isn’t going to kill me. I can’t say that the fear about the consequences of the cellular damage done is completely gone. But I can say that I feel good right now. It’s not going to kill me today. Today, I’m doing well.

Diet – I am not on any specific diet. I avoid junk food but other than that, I eat whatever. Food does affect how I feel, but I don’t think that it affects how I feel any more than it did before I got floxed.

Supplements – I’ve switched out my supplements a bit. I still take iron (Pur Absorb 5 mg/day) and I still think that it helps me a lot. I also think that magnesium (250 mgs. Chelated mag/day) helps me. Lecithin helped to clear my brain fog. Hydrochloric acid (HCL) helped to get rid of my nausea and heartburn. I also take a fish-oil supplement, chlorella, glucosamine, vitamin D3, vitamin K2, coenzyme Q10 and a probiotic.

Food Supplements – These supplements are actually food, so I’m putting them into a different category from the supplements. I think that all of them have helped me a lot. Brewer’s yeast – it’s full of B vitamins, amino acids, trace minerals and has things like uridine and iodine in it that are helpful. I think that brewer’s yeast has helped me a lot. Cod liver oil – full of good fats. Raw crushed garlic – for the thiamine and other nutrients. Beets – they make me feel better (nitric oxide??) – do NOT get scared when you pee/poo purple after eating beets.

Exercise – I still find pilates, swimming and walking to be very therapeutic. I haven’t been as diligent in sticking with them this year as I was the year before.

Meditation – I still think that meditation is a wonderful thing for everyone to do. I have gotten horribly lazy about doing it myself.

Acupuncture – I go to my acupuncturist about once a quarter now. I was going at least once a month previously.

Staying off the internet – I’ll give myself a big fat F- on this one. Being involved in floxie stuff over the internet doesn’t induce anxiety for me any more though – so I don’t think that it’s unhealthy for me that I concentrate on it too much.

Having a positive attitude – I think that I’m still doing pretty well with this one. It has been wonderful and touching to have a group of positive people commenting on this site – letting their fellow floxies know what they know – and everyone encouraging each other and having faith in the notion that this too shall pass. I thank everyone who has supported a floxie through their time of need with a positive attitude and/or words of wisdom.

As I have gotten healthier and healthier, I have become less diligent about doing the things that helped me to get to a place of health. It would probably be better for my continued health if I was more diligent about sticking with them. Oh well. I think that it’s relatively normal to get lazy about doing the things that you did to get healthy once you have reached a point where you feel healthy enough.

I consider myself to be 99-100% recovered.

I am very, very, very lucky.

I wish luck, healing and recovery for all of you! I know that a complete recovery is not possible for everyone, and, well, read this about partial recoveries – https://floxiehope.com/2014/03/05/redefining-recovery/. I like the quote at the end of it, “Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.” If a full recovery isn’t possible, I wish you a recovery in which the damage no longer controls your life.

I am incredibly grateful for everything that I have gained in the last year. This site has reached more people, and touched more lives, than I could have possibly imagined a year ago. More people have read, and cared about, my healing story than I ever could have imagined. I hope that it has helped you. I hope that this follow-up, letting you know that the improvements have continued for me, give you even more hope for your own healing.

Xoxo

-Lisa

 

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