Monthly Archives: June 2016

The Risk in the Remedy

remedy

For better or for worse, there is no one-size-fits-all method for recovery from getting floxed. Some people are helped by supplements, others can’t tolerate them, or even feel worse when taking them. Some people are helped by acupuncture, others think acupuncture is a waste of time and money. Some people are helped by physical therapy, others aren’t. Some people are helped by specific diets, others feel better when they don’t restrict what they eat. Some people are helped by nutritional IVs, others aren’t – and some people have even been hurt by them. As of right now, there is no right way to get through fluoroquinolone toxicity. There is no single supplement, or diet, or exercise, or practice, or IV, or food that cures everybody.

Even though we are lacking a specific cure for fluoroquinolone toxicity, there are people who recover. Each recovery journey is different, and the differences between the various recovery journeys can be hopeful or frustrating, depending on your perspective. The recovery stories on Floxie Hope (59 stories have been published so far) offer a tremendous amount of insight and information, and, more importantly, they offer hope. They let people know that recovery is possible, and hearing that other people have recovered is important for those currently going through the “flox bomb” going off in their body.

Because there is so little research into cures for fluoroquinolone toxicity, the information in the recovery stories and the support group forums is often seen as the only advice and guidance available to floxies. Though the recovery stories and comments on Floxie Hope (and the FB support groups) are intended to be helpful, and it is hoped that what helps one person can help another, it should be noted that everyone’s journey through fluoroquinolone toxicity is different, and what works for one person may not work for another. We all have different genes, different microbiomes, different hormone levels, different toxin loads, different viral loads, different liver function, different tolerances for each treatment, etc. There is no one-size-fits-all solution for fluoroquinolone toxicity, and what helps one person may not only not help another person, it may actually hurt them.

I encourage you to approach any and all remedies for fluoroquinolone toxicity with caution, thoughtfulness, and guidance from someone with an outside perspective or, even better, medical expertise.

Many floxies distrust doctors. It’s reasonable to distrust them – doctors played a role in poisoning each of us, then many people face denial and derision from doctors post-flox. But if you can find a doctor who you trust, who is open-minded, and who is willing to run multiple tests for you, his or her guidance can be incredibly valuable.

This disclaimer is posted at the bottom of each story on Floxie Hope:

** 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, affect 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.

People typically pay little attention to disclaimers, but I really want people to read and heed that one when they read the stories on Floxie Hope.

There is a lot of wonderful information on Floxie Hope, and each story is the 100% true story of the person who experienced/told/wrote it. They each shared their story to help others. But, for better or for worse, their story is not your story. We’re all different.

I certainly don’t want to discourage people from trying things that they think will be helpful in their recovery journey. I just want people to realize that we all react differently to different remedies, and that invasive and/or risky remedies should not be taken lightly.

The recommendations for fluoroquinolone toxicity recovery that people give can be broken up into three general categories–things that can’t hurt, things that are unlikely to do harm, and things that have some risk and can potentially do harm. It seems excessive to say that you need medical advice before doing the things that can’t hurt – like meditation or having a positive attitude. Likewise, for the things that are unlikely to hurt you, like changing your diet in a non-drastic way or taking epsom-salt baths, asking a doctor first is probably not necessary (in my opinion, but feel free to consult a doctor if you feel differently). But, for things that some people have reported being hurt by (and other people have reported that these things have helped them too – there’s that side as well) like nutritional IVs, essential oils, and even supplements, it’s probably best to consult with a doctor before going forward with those remedies.

Just…. be careful, my friends. We all want to get better, and it breaks my heart a bit when someone reports feeling worse after trying something mentioned on Floxie Hope. We’re all trying to get better and/or help others. Please just approach the remedies that have risk associated with them with caution…. and consult your doctor when necessary.

 

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All of the recordings for The Anxiety Summit are available for purchase. I am one of the interviewees. 🙂

 

Discussing Fluoroquinolone Toxicity on Lyme Ninja Radio

Lyme Ninja

I had the pleasure and honor of being interviewed by Mackay Rippey for Episode 92 of Lyme Ninja Radio. Please check it out and share it with your friends:

http://lymeninja.com/92-lisa-bloomquist/

Too many people with Lyme Disease have been poisoned by fluoroquinolones. Fluoroquinolones are dangerous, cell-destroying drugs that add insult to injury for people who are already suffering from Lyme Disease. I understand that people with Lyme often need to use antibiotics to fight the Lyme infection, but fluoroquinolones can do more harm than good for people already suffering from multi-symptom, chronic illness. There are safer antibiotics available. I encourage all of my friends with Lyme Disease to seek safer antibiotics to treat their disease.

Here is a post about Lyme and Fluoroquinolone Toxicity – Lyme Disease and Fluoroquinolone Antibiotics.

Thanks for listening!

 

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Minor, but Strange, Post-Flox Health Issues

adrenal-glands

I wrote the following post about a couple minor, but strange, post-flox health issues I had four years after taking Cipro/ciprofloxacin. In 2015 I went through a period of pain in my pelvis, and in early 2016 I had an odd issue where I felt like I had a hot coal in my abdomen in the middle of the night, and that was waking me up. I got through both strange issues, and neither bother me currently. I wrote this post with the hope that it could help others to get through the same issues.

https://www.hormonesmatter.com/pelvic-pain-abdominal-heat-personal-story/

Please read and share it – thank you!

I’m on the fence about whether or not I think these minor issues have anything to do with fluoroquinolone toxicity.

The bulk of my fluoroquinolone toxicity reaction was so long ago–in late 2011 and through 2012, and I truly have fully recovered since. I live my life as I did before I got floxed–I exercise, travel, have relationships, work, and socialize approximately like I did before I took Cipro/ciprofloxacin. I have energy and I’m not in pain. I can read, write, and think like I could before I got floxed. I’m doing fine, and since I took the Cipro/ciprofloxacin so long ago, I hesitate to connect my recent strange health issues to my experience with fluoroquinolone toxicity.

However…. I suspect that both these issues, however minor and transient, have to do with adrenal and hormonal dysregulation, and it’s possible that both were caused by the Cipro/ciprofloxacin I took back in 2011.

I wonder if destruction of vital gut bacteria by fluoroquinolone antibiotics leads to an inability to process and get rid of estrogen (1), which leads to estrogen-dominance and low progesterone (2). Low progesterone may contribute to several fluoroquinolone toxicity symptoms including peripheral neuropathy (3), and it is also linked to cortisol production abnormalities and adrenal fatigue (4). Adrenal fatigue and cortisol dysregulation may lead to other endocrine system problems and health issues (5).

A discussion of the effects of fluoroquinolones on the endocrine system is better spelled out in the WONDERFUL web site http://fluoroquinolonethyroid.com/, and an overview of how fluoroquinolones affect the thyroid can be found on https://www.hormonesmatter.com/fluoroquinolone-antibiotics-thyroid-problems-connection/. The effects of fluoroquinolones on the endocrine system should be explored further, as it certainly seems that there are significant connections. (When I posted this article–https://www.hormonesmatter.com/progesterone-peripheral-neuropathy/–about the connection between progesterone and peripheral neuropathy, two floxies noted that their PN went away when they were given progesterone while pregnant.)

I’m honestly not sure what steps I should take to keep my adrenals healthy, or what anyone else should do to manage their hormonal balance post-flox. Our hormonal systems are incredibly delicate, and there are complex feedback and feed-forward loops that make adjusting them difficult. Hormones often don’t react in a linear, predictable way, and it is highly recommended that you see a doctor before supplementing progesterone or any other hormone.

Some things that may help, that are less drastic than hormonal supplementation, are: manage your stress (through lifestyle adjustments, meditation, and breathing exercises), avoid xenoestrogens (plastics, pesticides, and processed foods), take probiotic supplements that have a significant amount of lactobacillus, eat small meals throughout the day, take a rejuvenating vacation, and avoid sugar and gluten. I plan to do those things, as well as vagal nerve toning exercises (https://selfhacked.com/2015/07/30/28-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/), float-tank sessions (https://floxiehope.com/2016/04/25/floatation-therapy-for-fluoroquinolone-toxicity/), acupuncture, and gentle stretching. With those things, hopefully I can keep my adrenals functioning well, and hopefully I can keep strange health issues from popping up in the future.

******

(1) “The gut also plays an important role in estrogen elimination. Phase II detoxification in the liver (medical term for the process of eliminating many hormones including estrogen) utilizes conjugation of estrogen to other compounds so they can be excreted in bile.[iv] If the gut flora is unbalanced, certain bacteria secrete an enzyme called beta-glucuronidase, which cleaves the glucuronide molecule from estrogen, allowing estrogen to be reabsorbed into circulation vs excreted in the stool. Lactobacillus, a healthy bacteria, decreases the activity of B-glucoronidase.[v] If the activity of B-glucoronidase is increased, more estrogen will be reabsorbed and potentially worsen the endometriosis.” https://www.vitalhealth.com/endo-blog/endo-belly/

(2) http://www.johnleemd.com/estrogen-dominance.html

(3) https://www.hormonesmatter.com/progesterone-peripheral-neuropathy/

(4) http://www.livestrong.com/article/496026-adrenal-fatigue-low-progesterone/

(5) https://adrenalfatigue.org/cortisol-adrenal-function/

 

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1,000,000 Views!

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Floxie Hope just surpassed ONE MILLION views! Whoo hoo!

A lot of people have learned about fluoroquinolone toxicity through reading the stories and posts on this site, and I’m pleased beyond words about that! From reading the stories and posts on Floxie Hope, thousands of people have learned about how fluoroquinolones can cause multi-symptom, often chronic, illness. It is a pleasure and an honor to be informing people and spreading the word about the dangers of these drugs. More than that, it’s a pleasure and an honor to be offering hope and support to people who are going through fluoroquinolone toxicity. Floxie Hope wasn’t started to raise awareness – that’s just a lovely byproduct – it was started to offer hope for healing to people going through fluoroquinolone toxicity. It was started to let people know that recovery is possible, and to tell them that they too can make it through the mess of fluoroquinolone toxicity. I hope that with each of the 1,000,000+ times this site was viewed the person visiting gained a little more strength, and a little more hope.

Healing is possible. Recovery is possible. Try to believe it. It can be difficult to believe that recovery can happen when going through the depths of fluoroquinolone toxicity, but keep trying. Keep believing that you will improve. You will.

I should acknowledge the people who don’t recover from fluoroquinolone toxicity, and I hope that those who are still ill after years of struggling, who know that they will never fully recover, realize that I don’t mean any disrespect to them. I think that hope is important for all of us, even those who are forever changed by these horrible drugs. We all need hope, even if it’s hope for tomorrow to be better, not hope for a full recovery.

This site has gotten far more traction, and far more attention, than I could have envisioned when I started it in 2013. What I’m more proud of than the 1,000,000 views mark though, is the community that has been built. More than 12,000 comments have been made on the home page of Floxie Hope, and almost 19,000 have been made on the site as a whole. In these comments you will find people asking for advice, and others responding with support and guidance. You will find people sharing their hopes, fears, remedies, insights, and warnings in the comments throughout this site. Knowledge has been built and gained through the community of people commenting on Floxie Hope. People have selflessly offered their time, expertise, guidance, advice, support, and LOVE to other “floxies.” This offering of love and support for other people, whom each commenter hasn’t met in person, is really beautiful, and I appreciate everyone who has commented and formed the community that is Floxie Hope.

I also appreciate everyone who has contributed their story to Floxie Hope! The stories of hope and healing are so valuable, and so helpful! Thank you to everyone who has written a story about their journey through fluoroquinolone toxicity, and recovery!

I recently received this lovely message from Josh:

“Thank you so much for all you have done and continue to do on behalf of us floxies worldwide. Your guidance, insight and determined spirit helped me through so many dark days at the height of my illness. Where there was no good advice or hope, you provided the light of both. It’s been nearly 3 years since I suffered my reaction, and even though I didn’t think I’d ever get better…here I am, happy and healthy. Thanks again, you’re a rockstar and help people more than you understand.”

I cried. That’s why this site is here. That’s why thousands of people have viewed this site, and hundreds have joined the Floxie Hope community – because hope is powerful.

Our stories are moving, and our truth is powerful. What happened to us matters and the louder we scream our stories – our truth – the more we will change the system. Progress has been made, but we still have a lot to do. There are still too many people getting hurt by fluoroquinolones, but hopefully that will change someday soon. Until the day comes when the madness of people being hurt by fluoroquinolones stops, we can stay here and offer help, hope, and community to those who need it.

Thank you to all who have made Floxie Hope. It’s all of us, together, making a difference.

 

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Prescription for Disaster – 22 years later

Bitter Pills Fluoroquinolone Toxicity Book

In Stephen Fried’s 1994 Washington Post article, Prescription for Disaster, Fried describes his wife Diane’s terrifying reaction to Floxin (ofloxacin), a fluoroquinolone antibiotic. It’s a wonderful, award-winning article on which Fried’s follow-up book, Bitter Pills: Inside the Hazardous World of Legal Drugs, was based. I highly recommend that you read both the article and the book.

This quote from Prescription for Disaster summarizes both well:

“Before Diane’s frightening experience, I had always thought of prescription drugs as pretty much idiot-proof. Your doctor tells you to take them, so you do, assuming that the worst that can happen is they won’t work. It turns out the worst that can happen is that you drop dead. The next worst is that your body is permanently damaged. Less worse, but still not very good, is that you suffer for hours, days or weeks with something your doctor may or may not recognize as a drug reaction — from one drug or an interaction. It may or may not go away by itself.”

Though both Prescription for Disaster and Bitter Pills are about the hazards of prescription drugs generally, both have quite a bit of information about fluoroquinolone toxicity, and Diane’s personal story of a severe CNS adverse reaction to Floxin is discussed in-depth.

In Prescription for Disaster, Fried notes:

“I KEEP WANTING this story to end, but it never does. Late last year I got a call from a producer of Oprah Winfrey’s show. She wanted to do a program on adverse drug reactions because she had just had one — to Floxin. Diane and I appeared on the program, along with several other people we had met through the original article, and since then I’ve gotten a steady stream of calls. Many of them are from people who had almost the same reaction Diane did, but weren’t as lucky to have doctors who at least recognized a drug reaction and were willing to learn what they didn’t know about how to treat it. I’ve talked to people whose spouses have lost their careers in the aftermath of drug reactions, people whose fathers attempted suicide because of depression that seemed to have been triggered by quinolones.”

We all want this story to end. More than 22 years later (Prescription for Disaster was published in April, 1994), it is still going on. Thousands of people are hurt every year by fluoroquinolones. People are experiencing tendon ruptures that leave them in horrible pain, exhaustion that leaves them bed-bound, gastro-intestinal issues that leave them unable to eat, CNS issues that leave them unable to work, peripheral neuropathy that leaves them in permanent pain, and more. I sincerely hope that the story of people becoming chronically ill and disabled after taking Cipro, Levaquin, Avelox, Floxin, or their generic equivalents, ends soon. It’s not a good story, it would be nice if it ended sooner rather than later.

On the WONDERFUL site, http://fluoroquinolonethyroid.com/, the author notes the following about the publication of Prescription for Disaster in 1994:

For anyone who thinks that the FQ ADR’s are something new, think again. It’s an old, old story, this one, which actually goes back much farther than 1994. But this article highlights how Pharma, FDA, flox victims, the ignorant and dismissive medical profession, even publicity on shows like GMA, Dateline, Donahue, and even Oprah — they were all there —  it’s all happened before — way back in 1994. It’s all been completely ignored; and in fact, sales of FQ’s continued to increase and soar exponentially during the past 20 years. I, and who the hell knows how many others just like me, have been “floxed” since then. Had the FDA, Pharma, and the medical profession done their job back then, my life (and many others) might have been spared.

Don’t think Pharma or the FDA is just finding out about these ADR’s now. They’ve known. They’ve known for a very, very, long time. And they’ve done absolutely nothing about it.

So when you hear all the Pharma companies make their same old tired and outright spurious statements over and over again about how “Safety is our greatest concern, and these antibiotics have been prescribed safely for the last 20-30 years without problems,“ and the FDA says “We take these safety issues very seriously and are looking into it,“ you’ll know what bullshit that is. There is a historical record accumulating, and this article is just one example for you to post in rebuttal.    Remember:  the internet saves everything now. There will be less and less places for Pharma to hide as time goes on and the number of victims the world over continue to grow.

FQ’s are once again in the news. We can only hope that this time, it will be different.

Yes, we can hope that this time will be different. We need to stay vigilant though, and continually push, so that the pharmaceutical companies, the FDA, and even many doctors and nurses cannot get away with the lies of, “Fluoroquinolones have an excellent record of safety and efficacy,” and, “Side-effects are rare,” and, “There is no known mechanism for fluoroquinolones to cause multi-symptom, chronic disease,” and, “Multi-symptom, chronic diseases are in patient’s heads – they don’t really exist,” and, “Fluoroquinolones aren’t connected with autoimmune diseases, fibromyalgia, ME/CFS, POTS, arthritis, psychiatric illnesses, thyroid autoimmune diseases, etc.” Those lies have been told over and over again since fluoroquinolones first entered the market in the 1980s. Repetition doesn’t make them true, but it sure helps to reinforce the lie.

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There is plenty of evidence that fluoroquinolones are dangerous, destructive drugs that can lead to chronic illness and disability for many. There is also evidence that the mitochondrial destruction done by fluoroquinolones is similar to that of mitochondrial destruction found in people with autoimmune and other “mysterious” diseases. The evidence isn’t even new. They’ve known since 1994 that these drugs are damaging to the point of being disabling. They know, they just choose not to do anything meaningful about it. It is possible to put meaningful restrictions on dangerous drugs that ensure that they are only used when appropriate (in life-or-death situations) and that proper informed consent is given before the drugs are administered. Rather than making these meaningful changes though, the FDA and the pharmaceutical companies have chosen to largely ignore the problem.

Everyone who has gotten “floxed” since 1994 has been hurt because of willful ignorance on the part of the FDA. They claim, over and over again, that these reactions are new, and that they’re just now hearing about them. I realize that news sinks in slowly in a bureaucratic institution like the FDA, but 22 years is ridiculous and, frankly, unacceptable. They knew that these drugs were dangerous then, because people told them back then. They know that these drugs are dangerous now, because people have told them again. Research has also accumulated since 1994, and there are hundreds, if not thousands, of articles about the dangerous effects of fluoroquinolones published in journals (here’s a sampling of just a few – https://floxiehope.com/fluoroquinolones-links-resources/).

When is this going to stop? When will the FDA start doing it’s job and adequately regulating these dangerous drugs? How many more people have to get hurt by fluoroquinolones? How many more times do we have to scream at them and tell them what they already know – what they have known for more than 22 years – that fluoroquinolone adverse reactions are severe and devastating? It’s ridiculous. This mess should have been stopped 22 years ago. The FDA should have made meaningful changes to prescription guidelines for fluoroquinolones in the 1990s. If not then, they should have done so in 2008 when Public Citizen sued the FDA in order to get the black box warning about tendon ruptures added to the fluoroquinolone warning labels. Since meaningful reform didn’t happen then, how about now? The FDA just had a hearing about the risks of fluoroquinolones, and found that the risks outweigh the benefits in treatment for many common infections. They have the opportunity to enact meaningful change now, and they should do so.

I doubt that they will make meaningful, appropriate changes though. Business will go on as usual. People will continue to be hurt by fluoroquinolones. People who should know better (FDA personnel, Pharma scientists, doctors, etc.) will insist on saying that these adverse-reactions are rare, and thus insignificant and untrue. It’s a shame, because they are incorrect. These adverse reactions are severe, devastating, and not near as rare as they should be.

So… we have to keep screaming. We have to keep telling the news media about our reactions, writing to anyone who might listen, filing reports with the FDA, writing articles and blog posts, petitioning scientists, talking to friends, sharing articles, etc. We have to keep banging the drum until they listen.

I’m not sure how long this process will take. It’s been 22 years since Prescription for Disaster was published. I hope that it doesn’t take 22 more.

 

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Preventing Fluoroquinolone Toxicity

Prevention

I was talking with my boyfriend about yesterday’s post, “Researching Cures for Fluoroquinolone Toxicity,” and he brought up a good point:

Yes, a cure would be nice, but fluoroquinolone toxicity is just so preventable – prevention seems like a better strategy. 

Yes, we (as a society) could pour tons of money, time, resources, etc. into finding a cure for fluoroquinolone toxicity, OR we could stop floxing people and prevent them from needing said cure in the first place.

As Benjamin Franklin wisely noted, “an ounce of prevention is worth a pound of cure.”

For those of us who have been hurt by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin, a cure is very much needed and wanted. We know our poison, now where’s our antidote? It’s a reasonable and appropriate question for those who have been hurt, but I believe that prevention of damage will help more people than a cure.

Dear doctors, nurses, pharmacists, and everyone else in the medical system: STOP prescribing fluoroquinolones unless your patient is fighting a verified, life-threatening infection that is not responding to other drugs! 

People are suffering from disabling fluoroquinolone toxicity reactions after taking Cipro when there are other viable treatments and/or when antibiotics aren’t even needed.

People are regularly prescribed Cipro to treat travelers’ diarrhea and some of those people experience debilitating adverse reactions to it. Their reaction and their suffering are avoidable though, because travelers’ diarrhea is treatable with more benign methods – probiotics, hydration, and Pepto Bismol should do the trick. Most cases of fluoroquinolone toxicity due to taking Cipro, Levaquin, Avelox or Floxin for travelers’ diarrhea are completely PREVENTABLE!

Even the FDA has acknowledged that the risks of using fluoroquinolones outweigh the benefits when treating sinus infections, bronchitis, and uncomplicated UTIs:

“FDA is advising that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.” (Source – straight from the FDA.)

Everyone who is suffering from fluoroquinolone toxicity after taking Cipro, Levaquin, Avelox, or Floxin as treatment for a sinus infection, bronchitis, or an uncomplicated urinary tract infection was hurt even though more benign antibiotics (or time, assuming that one’s immune system is functioning properly) could have been used.

Many cases of prostatitis aren’t bacterial, yet many men are given long courses of fluoroquinolone antibiotics to “treat” their prostatitis. In case it needs to be said, fluoroquinolone antibiotics are no better than placebos at treating non-bacterial prostatitis. Too many urologists are prescribing dangerous drugs (fluoroquinolones) that are no better than placebos, and hurting many men in the process.

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Many people are prescribed Cipro, Levaquin, Avelox or Floxin to treat non-bacterial bladder pain. Interstitial Cystitis (IC) is a great imitator of bladder infections, and fluoroquinolones do NOTHING to treat IC pain–they may even make it worse.

All the pain and suffering that comes with fluoroquinolone toxicity, and there’s a lot of it, is SO PREVENTABLE for so many people! Remember: DO NO HARM! 

According to FDA figures, 26.9 MILLION prescriptions for fluoroquinolones were disbursed in 2011 alone (they haven’t updated their figures since 2011). Too many of those prescriptions were inappropriate. Many of them were for ailments that weren’t even bacterial infections.

“‘Antibiotic therapies are used for approximately 56 percent of inpatients in U.S. hospitals, but are found to be inappropriate in nearly half of these cases, and many of these failures are connected with inaccurate diagnoses,’ study author Dr. Greg Filice said in a news release from the Society for Healthcare Epidemiology of America.” (source)

Everyone in the medical system needs to recognize that adverse reactions to fluoroquinolones are disabling, often permanent, and that they look a lot like a multi-symptom, chronic illness. Unfortunately, at this time, there is no way to tell who will have an adverse reaction to a fluoroquinolone, so, as far as doctors should be concerned, EVERYONE is at risk. Fluoroquinolones are dangerous drugs, and their benefits do not outweigh their risks for many infections. They should ONLY be prescribed for treatment of verified, life-threatening infections that cannot be treated with more benign drugs.

If those basic rules were followed, there would be significantly fewer “floxies.”

Prevention is the answer to this problem.

A cure would be nice, but prevention is better.

The FDA acknowledges that fluoroquinolones have potentially permanent adverse effects, and that their risks outweigh their benefits for many patients/conditions. Now the FDA needs to put some policy changes behind this knowledge, and make sure that fluoroquinolones are not prescribed inappropriately.

Enacting policies that cut fluoroquinolone prescriptions by about 90% would be a good place to start.

Yes, there are cases when fluoroquinolones are the appropriate drugs to use – when a patient is facing death without the drugs. But a large portion of the prescriptions being written for Cipro, Levaquin, Avelox, and Floxin are completely inappropriate. A large portion of the pain, suffering, and destruction caused by fluoroquinolones is preventable.

The FDA is capable of enacting policies that prevent many cases of fluoroquinolone toxicity. They have the information, they have the power, they need to do what is right –

Stop unnecessary fluoroquinolone prescriptions! Prevent disabling fluoroquinolone toxicity!

There are safer drugs available in most cases.

 

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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.

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