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.
Lisa, continued thanks for all you do on this topic. I’ve been traveling quite a bit for work but still dealing with joint and muscle pain. I am headed to my natural food store for some magnesium oil.
It’s strange, some days feel better than others. I seem to have hurt my shoulders doing some yard work. Good grief. I hate living in fear of exercising thinking it could do more damage.
Did you say at one point on our conversation that you are aware of people whose joint pain did resolve over time? I am curious about that because if indeed the tendon matrix is harmed, I can’t imagine how it could improve. Hence the chronic disabling feature of this drug.
You have done so much to instill HOPE. And for that I am grateful. I keep telling myself, I WILL get better with time, but it’s been really hard being inactive.
I am seeing a doc tomorrow so I can get some ultra-sound images of my elbows, wrists and ankle, and then seeing a physical therapist for her advice on what I can do, without doing more damage. That’s really the key. Stay active without inflicting damage.
It’s a scary place to live, but I just wanted to tell you how much I appreciate all you have done for our “community.”
I will be in touch re the radio spot.
Best,
Melinda Hemmelgarn
As for “not to toot my own horn….” TOOT AWAY Lisa! You probably have no idea just how many lives you have saved/helped/supported. It’s not just the thousands who come to floxie hope and find ways to improve their condition, but all the people THEY tell to not only help treat but also to warn in advance of taking FLQs. So it is not just the actual ones you can count on this site, but more likely in the tens (or hundreds) of thousands whom you have helped.
Thanks Lisa….I was able to help with my symptoms because of your site….I have some flare-ups every now & them..but nothing I can’t live with…..without your site I do not know what I would have done….Thanks for being their for all of us….I always read the information you post…God Bless You….
I am a chronic tick borne disease patient, and I read a blog post once by someone who believes he was “floxed” after taking a course of Cipro. As I read his long list symptoms and description of his suffering, I was shocked to see the parallels to my own symptoms of chronic neuro Lyme Disease and Bartonella. I became convinced that his course of Cipro had woken up stealth Lyme and Bartonella infections in his body. Both can cause tendon, muscle, and joint pain and even cause damage.
I’ll never know if I was right, but wouldn’t it be fabulous if some people who believe they’re permanently injured by a Fluoroquinolone but actually have rampant infections could actually be treated and get better? Anybody who has additional symptoms not explained by Fluoroquinolone side effects should go see an ILADS trained physician to get properly checked out for tick borne diseases. Standard lab tests miss about half of all cases, and medical doctors are sadly ignorant about them.
Note: I’m not disrespecting those who have suffered from Fluroquinolone side effects by suggesting it’s not real. The damage these drugs can do is very real and clearly they’ve been over prescribed inappropriately because doctors weren’t properly warned about the risks. I’m glad that’s changing. My own Mom had a mystery case of partially detached Achilles’ tendon for many months until I asked if she’d taken Cipro. She had taken it for a UTI a month or two before the tendon pain started, and neither doctor she saw during that time frame made the connection. It took nearly a year to fully heal. She never would have known if I hadn’t told her.
Why don’t we use common sense and the periodic table as a basis for a cure or at least treatment. The fact that these fluoroquinolone medications are made with FLUORIDE, a known toxic element and the fact that symptoms of fluoroqinolone poisoning are the same or at least similar to Fluoride poisoning…..should be the direct connection that is used to bring about treatment and healing methodology.
The recommendations for using Magnesium, Iodine, Boron and other healing modalities that are now recommended point to treat Fluoroqionolone poisoning support the validity of the Fluoride excess / toxicity treatment protocol.
Simply put Fluorquinolone toxicity = Fluoride Toxicity. They are in many ways one and the same. Is that the common understanding? and If not, why not? And if so , why is proving it to the medical community and treating it effectively with a protocol so difficult and illusive???
So many of us, from all walks of life and with many different abilities and backgrounds have been poisoned……are we all able to sign a registry….or form a coalition…..JUST ONE PLACE WHERE ALL ARE ABLE TO LOG POOL OUR POWER TO CHANGE PUBLIC POLICY AND INSIST ON A VIABLE COURSE OF TREATMENT. (hopefully holistic).
Can anyone with experience with this issue give some feedback…. thank you.
I started using Cicatendon in November of 2015, 2 years out from my floxing. I use it daily still and I do believe it has helped. I wish I had known about Cicatendon when I was initially floxed, as it may have helped my tendons more at that point before they became so damaged.
Thanks for sharing this, Lisa! 🙂
Hi everyone,
Just for information purposes, after 19months and feeling much better, I had a nerve test prior to seeing a neurologist, this caused a massive flare up of PN in my feet and legs, fatique, and sleep problems, which I had more or less conquered. So be very careful before you have one. By the way the test came back negative
I too have tried the Cicatendon; unfortunately I noticed no benefits from it. In fact I’ve not found a single supplement over the years that’s made a bit of difference in my condition.
Thank you Denise….I have also had loose teeth and Vitamin C helps a lot. Have done some of the things you recommend. Eat Brazil nuts for selenium. What amount of zinc do you take? Thank you…I also use some tamarind to detox fluoride
.
I take a liquid zinc, the recommended dose is ten drops which is what my doctor told me to do. Zinc is one vitamin you don’t want to take more of. A neurologist who is familiar with levaquin toxicity told me this.
I took leviquin for pneumonia and now later have balance problems and my head hurts and a I have a foggy brain. This has been going on now for about 4 weeks. What can I do. And who should I see. Dr said it was inner ear but I don’t think so. Dr does not seem to care .
Suzy
Finding a cure would be great for us that has already been damaged
But the best thing would be to ban all
Fluroquinolones it’s already been proven that risk out weigh the benefits of its use and even in the case of life or death situations it’s not gonna help most people that has already been damaged has no quality of life and others that was in life and death situations would rather die than be saved by this medicine and suffer the effects of it there will not be any quality of life left
I don’t believe there will ever truly be a cure because once you’ve reached your limit of accumulated fluoride in the body, you will always be on the edge of being refloxed. Along with treating the damage that it’s caused mainly with good nutrition and necessary supplements, your best bet is to stay ahead by eliminating fluoride as much as possible and detoxing using proven methods such as tamarind. I’m a floxie and have managed to get on top of it after being floxed at least three times. After finally figuring out the cause, l was able to treat the damage however, if I go off course for a few months, symptoms do start to creep back in. Fortunately I now know how to nip it in the bud quickly. It takes a very long time to fully heal the damage that’s been done and even longer to eliminate fluoride from the body to a point where you can return to your previous lifestyle. You just have to stay ahead of the game for the rest of your life.
This removes fluoride and treats many symptoms.
http://www.health-science-spirit.com/borax.htm
For some of us there is no recovery
If anyone is looking for Cicatendon, I have an extra bottle here: https://www.ebay.com/itm/222897448543
It is becoming more and more apparent that many of the illnesses you listed above that were being researched for their Mitochondria connection along with Fibromyalgia, AUTOIMMUNE disease and ME/CFS etc.etc. MAY HAVE THEIR ORIGINS IN FQ DRUG POISONING…..VARYING. MANIFESTATIONS OF ADVERSE DRUG REACTIONS. The poisoning taking place is ctaking down our US HEALTHCARE SYSTEM ONE VICTIM AT A TIME.
I was also poisoned by Ciprofloxacin (flouride attached to a quinolne). I had two jobs and felt fine at the age of 35. I was prescribed Ciprofloxacin 500mg twice a day for 28 days. I had not been to the doctor for over 15 years and had NO health issues. Shortly after taking Ciprofloxacin I developed vertigo, dizziness, fasciculations, muscle weakness, headaches, scoliosis, horrible neck & back pain, lack of stamina, and brain fog. I recently had a muscle biopsy and it came back “suggestive for mitochondrial myopathy”. After extensive research I have finally found a recipe to HELP! I Take/eat Tamicon Tamarind Concentrate Organic, Asian Best Tamarind Candy, Boron 3mg daily, Detoxadine Nascent Iodine, Magnesium L-Threonate, Calcium Citrate, Vitamin D3 & K2 1,000IU/ 45mcg, Pure Shilajit, Coq10, NAC, S.O.D., Resveratrol, Astaxanthin, L-Glutathione, B Vitamins, L-Carnitine, L-Carnosine, Green & White tea & pure organic Cordyceps. YOU MAY HAVE BEEN POISONED BY FLOURIDE AS I WAS. I have also stopped using toothpaste w/ flouride and use flouride reduction water filtration. I went through 4 1/2 years of agony almost giving up! Do not give up!!!
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