Researching Cures for Fluoroquinolone Toxicity

Cure pic

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.

flu tox get help you need banner click lisa

 

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26 thoughts on “Researching Cures for Fluoroquinolone Toxicity

  1. melindahemmelgarn June 7, 2016 at 8:48 am Reply

    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

    • Lisa June 7, 2016 at 5:02 pm Reply

      Hi Melinda,

      Thank you for your kind words! It’s my pleasure to do what I can.

      I am hopeful that our tendon matrix can heal itself with proper nutrition, supplements and time. Minerals, especially magnesium, seem to be key in repairing the tendon matrix. I felt as if my tendons were helped a lot by supplementing iron too. Maybe some of the other components of the TOL19-001/Cicatendon – spirulina, glucosamine sulfate, ginseng, selenium, sillicium, iron, vitamin E and zinc – can be helpful too.

      I certainly feel as if my tendons have repaired. I hope that my feeling reflects reality. 🙂

      Swimming helped me to stay active without inflicting damage. I like it a lot.

      I look forward to chatting with you!

      Regards,
      Lisa

  2. L June 7, 2016 at 9:02 am Reply

    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.

    • Lisa June 7, 2016 at 5:03 pm Reply

      Thank you so much! xoxoxo!

    • John Kneeland June 8, 2016 at 8:02 am Reply

      +1. Toot Lisa, and never stop!

  3. Cindy Schmidt June 7, 2016 at 9:12 am Reply

    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….

    • Lisa June 7, 2016 at 5:03 pm Reply

      Thank you so much, Cindy! I’m so glad that I could help! 🙂 Huge hugs to you!

  4. M.T. June 7, 2016 at 1:01 pm Reply

    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.

    • L June 7, 2016 at 1:26 pm Reply

      Actually, many of the side effects are very similiar. When I was getting IVs about half of the ND’s patients were there for one or more forms of Lyme and their treatments in many ways were very similar to mine. He used to joke that everyone there for Lyme thinks the FLQ patients all have Lyme, and everyone treated for FLQ toxicity thinks all the Lyme patients are really FLQ patients. I think there is certainly a possiblity of some cross-over, but mostly I think they just have very similar side effects. And it makes sense, because if something say, damages the nerves, the side effects will be similar no matter what the disease.

    • Lisa June 7, 2016 at 5:17 pm Reply

      Hi M.T.,

      I actually wrote a post about the relationship between FQ toxicity and Lyme. 🙂 Here it is – https://floxiehope.com/2014/09/19/lyme-disease-antibiotics/. To sum it up, I think that both Lyme Disease and FQ toxicity are real and that they are serious problems that aren’t being properly addressed. As for whether or not they’re related…. well…. here are my thoughts: FQ toxicity symptoms are often similar to Lyme disease symptoms, and vice versa. There are almost certainly some people who identify with one that are “really” the other. It may be possible that FQs bring out Lyme disease, but I find that to be doubtful because there is no evidence of that in the scientific literature, and the scientific literature does show damage done by FQs to cells in humans, animals, and petri dishes. Those humans and animals tested didn’t have Lyme (especially not the poor beagle puppies that were crippled by FQs – sadness). There is also the remote possibility that both FQs and tick-borne horribleness bring out some other illness – like Epstein Barr. But there is no evidence of that either… so, take that notion for what it’s worth. I think that, at a cellular level, FQ toxicity has a lot in common with Lyme (and ME/CFS, fibromyalgia, autoimmune diseases, etc.) and that in finding a cure for Lyme & coinfections, or any of the “mysterious diseases of modernity,” there will likely be answers to FQ toxicity in that “cure.” As of right now, we’re all dealing with neglect from the medical and scientific communities, and I like to think of us all being on the same “team.”

      Have you seen this article? It’s very good – http://www.huffingtonpost.com/david-michael-conner/and-the-band-plays-on-a-n_b_10126532.html

      How’s your mom doing? Good job connecting the dots for her!

      Regards,
      Lisa

    • Simon August 6, 2016 at 3:22 am Reply

      This is very interesting. My Name is Simon from Germany I took Cirpo in August 2013 I was “healthy” but after cipro I had chronic muscle pain, chronic fatigue, depression, in the beginning tendon pain and so on. I was 100 % sure that all my symptoms were due to cipro until 2 years later in 2015 I had a bloodwork with very high mercuy in my blood 3 times ! So I tought okay maybe there was an underlying problem maybe it is both or the mercury is the problem and that’s why I can’t heal from cipro. And now 1 Month ago I went to a very good doctor actually because of my mercury problem and he did a test and told me ” yes mercury is your problem but the lab tests are back and you have the Lyme disease too and she was very sure it’s chronic Lyme disease she can’t told me how long I have the Lyme disease but she said it is very possible that I have it since some years “. Wow in the beginning there was only cipro and now through constant research and bloodworks (the right bloodworks very difficult to get) I know I am mercury poisoned and I have lyme disease and through a gene test I found out I have a detox problem. So not saying cipro isn’t toxic please don’t get me wrong as Lisa said there are studies that show how toxic that cipro is. BUT ! maybe for those people who can’t recover or hit very hard by cipro maybe there is another underlying health issue even if they felt healthy before ! They can’t detox because of the genes or have a mercury problem or something else just a theory sometimes I think there must be a reason why people can swollow 60 cipro pills in 10 years like my mum and she feels very well and other are getting very sick of it. Just my thoughts ! Currently I detox from the mercury and then I try to heal my Lyme disease if that is possible and if I can get back on track I will write a recovery story I promised this Lisa already.

      • Lin Stevs August 9, 2016 at 1:06 am Reply

        What test showed problems w detox? What test did you have for mercury? Can you tell a little more about who you are seeing and what protocol you are following and what supplements you are taking. Thank you…..I have had Lyme/babesia (in 2000) became very ill and am now after taking Cipro….7-8 times over the past 20 years suffering Cipro Toxicity (became very ill, again). I feel like I have problems detoxing also. Thank you sincerely for any help you can provide.

  5. Lin Stevs June 8, 2016 at 5:51 am Reply

    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.

    • Lisa June 8, 2016 at 6:50 am Reply

      Hi Lin,

      There are many possible mechanisms for fluoroquinolone toxicity. Fluorine may be at the root of all of them. I used to think otherwise – in part because I recovered without avoiding fluoride – but the more I research fluorine, the more dangerous I believe it is. There are other possibilities though, as noted in this post – https://floxiehope.com/2016/01/07/is-fluoroquinolone-toxicity-quinolone-toxicity-or-fluorine-toxicity/. I know that some people have recovered by avoiding fluoride and going through a fluoride reducing protocol. It is certainly worth looking into for all “floxies.” I now avoid fluoride as much as I can.

      Regards,
      Lisa

    • L June 8, 2016 at 9:58 am Reply

      While I agree that a big piece of the puzzle is the fluoride link, it is not everything. Sadly, MANY pharmaceuticals contain fluoride, like antidepressants, and asthma inhalers, and yet you don’t see this extreme type of damage. Here, the fluoride only serves to enhance the damage.

    • Denise Ramser September 8, 2016 at 7:01 pm Reply

      I totally agree with you, fluoride poisoning. After my Levaquin poisoning, along with all the horrible side effects , my teeth all loosened too. A bell went off because my dog had fluoride poisoning due to a dental treatment. Caused her all the problems I was experiencing. So that was where I started with my protocol, I removed fluoride ( as best I could, they put it in our water, another brilliant move). I no longer use fluoride toothpaste, my teeth all tightened back up. I take an enormous amount of supplements, all the b vitamins, c, d,e, iodine, amino acids, major antioxidants. Went organic with my food to help my immune system. Oh and can’t forget, magnesium, not only take it orally but soak in the bath as well, zinc and selenium. I am much, much better. My poison date was march 2015. It’s been a horrible experience, tendon damage, surgery you name it. Hair fell out, pain throughout my body etc. Hang in there, look up fluoride poisoning and the antidote. Start there and see what works for you. Good luck and may the people responsible for this poison 💀 one day get their due.

  6. Suzanne Higley June 9, 2016 at 9:48 am Reply

    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! 🙂

    • Suzanne Higley June 9, 2016 at 9:50 am Reply

      I mean 3 years out from my floxing, not 2 🙂

  7. Barbara Arnold June 10, 2016 at 4:24 am Reply

    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

    • Jason June 21, 2016 at 2:52 pm Reply

      Hi Barbara. What was involved in the Nerve test? Supplements, Drugs, what kind of physical maniuplations etc? Sorry to hear about the Flare up and thanks for warning other people. I am curious as to how this can cause a flare-up hence the questions

      • Barbara Arnold February 23, 2017 at 4:29 am Reply

        Jason,
        Sorry only just seen your post, browsing through floxie hope. The nerve conduction test consisted of them sticking long needles into the muscles my legs. These were conected up to a machine. My husband could see what they were doing, I couldn’t as I was lying flat.
        Up until this point I was feeling really well after a vacation. I had slight neuropathy and heavy legs. After this act of sheer sabatage, I had the most horrendous pain, and also terrible insomnia. It also caused depression which I did not have before as I was coping really well. This continued for months. I am only now feeling the neuropathy is as a point that I can cope with. However I still have depression which I did not have before. Also I have anger issues as no one is made accountable for all this suffering. The insomnia has got better, but I occacionaly have broken sleep, and cannot get back to sleep.
        Overall its taken 8 months to get to the point I was before I had the test. I have read others have had it without any adverse effects, so it beats me. The test by the way came back normal ? I will not have anything invasive ever again. They dont have any idea what they are doing, we are just guinee pigs in all of this mess.

  8. TooFarGone August 4, 2016 at 7:43 pm Reply

    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.

  9. Lin Stevs September 9, 2016 at 5:14 pm Reply

    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
    .

  10. Denise Ramser September 16, 2016 at 11:23 am Reply

    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.

    • Lin STEVS September 16, 2016 at 12:51 pm Reply

      What is the brand. Are there any other things that were recommended?

  11. Suzy robbins November 30, 2016 at 12:26 pm Reply

    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

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