Tag Archives: Peripheral neuropathy

Fluoroquinolone Antibiotics Associated with Carpal Tunnel Syndrome

It is well-known and well-documented that fluoroquinolones weaken and destroy musculoskeletal tissues–especially, but not limited to, tendons. 

Additionally, it is known that fluoroquinolones cause neurological problems, and can lead to painful and debilitating peripheral neuropathy. (In 2013, fluoroquinolone warning labels were updated to note that Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin can cause permanent and disabling peripheral neuropathy.)

Given that fluoroquinolones disproportionately affect the tissues in joints, and that they also adversely affect nerves (causing painful neuropathy), it’s not surprising that fluoroquinolone antibiotic use is associated with Carpal Tunnel Syndrome (CTS)–a medical condition that includes “pain, numbness, and tingling, in the thumb, index finger, middle finger, and the thumb side of the ring fingers,” as well as weakness and muscle wasting.

Both CTS and fluoroquinolone-use are common in America, and researchers Jasmine Z. Cheng, Mohit Sodhi, Mahyar Etminan, and Bruce C. Carleton, examined how they are related in “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” published in the journal Clinical Infectious Diseases in August, 2017.

In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers found that, “Any use of FQ within the year prior to CTS diagnosis was associated with a 34% and 36% increased risk of CTS in the primary and sensitivity analyses, respectively” and that:

“The results of our study are consistent with an increase in the risk of CTS with FQs. The risk was consistent among all risk periods with a slight increase among past users, which may be due to the longer period elapsed for CTS to manifest itself. FQ-related neurotoxicity can persist cumulatively in relation to exposure levels [8, 9]. The exact mechanism by which this occurs is unknown [9], but proposed models include direct nerve inflammation and ischemia from toxic metabolite and free radical formation [10], and FQ-induced tendonitis/tendinopathy causing mechanical compression upon the adjacent nerves (eg, median nerve) that share the carpal tunnel [11]. Reports of nerve biopsy studies on patients who have experienced FQ adverse events have revealed significantly reduced nerve fiber density consistent with small fiber neuropathy, which may be a potential mechanism of CTS [12]. Although neurotoxicity is the second most commonly reported adverse event, with several studies documenting FQ association with central and peripheral nerve damage [8, 9], this is the first large-scale study exploring the relationship between FQs and CTS.”

CTS is a malady that affects thousands of people and has societal costs in the millions of dollars. In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers note that:

“CTS is a disease of significant societal burden with a prevalence of 5% and incidence of up to 2.3 per 1000 person-years [4, 5]. CTS causes loss of function and decreased quality of life for individual patients, and also comprises a large cumulative drain on healthcare and socioeconomic resources from loss of productivity and worker’s compensation claims [6]. One study of 4443 CTS claimants in Washington State estimated a cumulative socioeconomic cost of US$197–$382 million over 6 years for this cohort alone [6].”

Fluoroquinolones are increasing the risk of CTS in millions of people (20+ million prescriptions for fluoroquinolones are written each year). Are doctors or patients aware that they are increasing the patient’s chances of CTS–a painful, debilitating, and costly condition–when fluoroquinolone antibiotics are taken? I doubt it, but they should be.

Please spread the word about how dangerous fluoroquinolones are by sharing posts, news articles, and research articles that connect fluoroquinolones with other illnesses. It wouldn’t occur to most people that a commonly prescribed class of antibiotics could be connected with CTS, psychiatric illness, pain, pseudotumor cerebri, tendon damage and ruptures, or multi-symptom chronic illnesses. But fluoroquinolones ARE connected with those, and other, diseases and syndromes. Articles like “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” help to provide evidence of the extensive damage that fluoroquinolones do, and I am grateful to the researchers who examined the connections. Please spread the word so that doctors and patients alike are informed. Thank you.

 

 

Floxie Hope Podcast Episode 24 – PJ

PJ shared his journey through fluoroquinolone toxicity on Episode 24 of The Floxie Hope Podcast. Check it out!

http://www.floxiehopepodcast.com/episode-024-pj/

or

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

PJ was given IV levofloxacin/levaquin and flagyl in the hospital, and afterward he suffered from multiple severe side-effects including debilitating fatigue, peripheral neuropathy, body-wide numbness, pain, inflammation in all his joints, and more.

He has come a long way, and he is 80% recovered.

PJ is wonderfully insightful and inspirational. Please listen to, review, and share, this episode of The Floxie Hope Podcast. Thanks!!

 

 

 

 

Mitochondria, Neuropathy, HIV, and Fluoroquinolones

Mitochondria and Peripheral Neuropathy – Article out of Johns Hopkins

I highly recommend reading this article –

Feet First? Old Mitochondria Might Be Responsible For Neuropathy In The Extremities

It’s a fascinating article out of Johns Hopkins Medicine.

It goes over the connection between mitochondrial damage and peripheral neuropathy.

As an explanation as to how dysfunctional mitochondrial lead to peripheral neuropathy, the article notes that:

“He and his colleagues suspected that the reason (for peripheral neuropathy) might lie within mitochondria, the parts of cells that generate energy. While mitochondria for most cells in the body have a relatively quick turnover — replacing themselves every month or so — those in nerve cells often live much longer to accommodate the sometimes long journey from where a cell starts growing to where it ends. The nerve cells that supply the feet are about 3 to 4 feet long in a person of average height, Hoke explains. Consequently, the mitochondria in these nerve cells take about two to three years to travel from where the nerve originates near the spine to where it ends in the foot.”

Peripheral Neuropathy and HIV/AIDS

It is also noted in the Johns Hopkins article that peripheral neuropathy is “a condition that often accompanies other diseases including HIV/AIDS.”  I wonder, is peripheral neuropathy in HIV/AIDS patients caused by the disease, or the treatment for the disease?  In Mitochondria as a Target of Environmental Toxicants, it is noted that:

“Another example is the nucleoside reverse transcriptase inhibitors (NRTIs) that are used to combat human immunodeficiency virus (HIV) infection. NRTIs act by inhibiting the reverse transcriptase activity required for viral replication. They have been highly successful in treating adults and in preventing transmission of HIV from pregnant mothers to their children, but unfortunately many NRTIs also inhibit the mtDNA polymerase γ. This has resulted mtDNA depletion- and mutation-mediated mitochondrial toxicity, and even death, in patients and in animal models (Benhammou et al., 2007; Blanche et al., 1999; Chan, 2007; Claessens et al., 2003; Divi et al., 2010; Kohler and Lewis, 2007). Similar effects have been observed with nucleoside analogs intended for other viruses as well (McKenzie et al., 1995). Thus, chemicals that damage mtDNA or alter its copy number can have very serious health consequences.”

Pharmaceuticals and Mitochondrial Damage / Peripheral Neuropathy

I think that the article out of Johns Hopkins is great, and I greatly appreciate the research that has been done.  However, I suspect that the researchers missed an opportunity in not noting that drugs that deplete mitochondrial DNA are responsible for many cases of mitochondria related peripheral neuropathy.

The damage to mitochondria done by NRTIs is well documented.

Other drugs, including fluoroquinolone antibiotics – Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin – are also well-documented as being destructive to mitochondria AND causing peripheral neuropathy.

In the article, Calcium Signals Are Affected by Ciprofloxacin as a Consequence of Reduction of Mitochondrial DNA Content in Jurkat Cells, it is noted that ciprofloxacin, a fluoroquinolone depletes mitochondrial DNA content.  It is also noted in the article, Delayed cytotoxicity and cleavage of mitochondrial DNA in ciprofloxacin-treated mammalian cells, that ciprofloxacin treated cells show a loss of mitochondrial DNA.

Though Delayed cytotoxicity and cleavage of mitochondrial DNA in ciprofloxacin-treated mammalian cells was published in 1996, it was not until 2013 that the FDA added the risk of permanent peripheral neuropathy to the warning labels for fluoroquinolones.   The case study, Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration illustrates the severity of peripheral neuropathy brought on by (the mitochondrial damage done by) fluoroquinolones.

It is also noted in the FDA’s April 27, 2013 Pharmacovigilance Review, “Disabling Peripheral Neuropathy Associated with Systemic Fluoroquinolone Exposure,” that the mechanism for action through which fluoroquinolones induce peripheral neuropathy is mitochondrial toxicity. The report says:

“Ciprofloxacin has been found to affect mammalian topoisomerase II, especially in mitochondria. In vitro studies in drug-treated mammalian cells found that nalidixic acid and ciprofloxacin cause a loss of motichondrial DNA (mtDNA), resulting in a decrease of mitochondrial respiration and an arrest in cell growth. Further analysis found protein-linked double-stranded DNA breaks in the mtDNA from ciprofloxacin-treated cells, suggesting that ciprofloxacin was targeting topoisomerase II activity in the mitochondria.”

Conclusion

I really do appreciate the research described in Feet First? Old Mitochondria Might Be Responsible For Neuropathy In The Extremities.  Experiments, analysis and scientific documentation are needed.  But synthesis of existing information is needed too.

Drugs that deplete mitochondrial DNA are leading to peripheral neuropathy.  Perhaps the Johns Hopkins study is the piece of the puzzle that is missing from widespread recognition of this.

We shall see.

FQ Toxicity Featured in The Healing Pain Summit

 

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I had the honor of being interviewed by Dr. Joe Tatta, DPT, CNS, for the Healing Pain Summit. In our interview, we discussed how fluoroquinolones can cause chronic pain and disability. Even before we spoke, Dr. Tatta was aware of fluoroquinolone toxicity and the pain and disability caused by fluoroquinolone antibiotics. He has treated several patients who have experienced the pain and trauma of fluoroquinolone toxicity. It was an honor to speak with a doctor as knowledgable, compassionate, and understanding as Dr. Tatta.

Please join me and Dr. Tatta, as well as an incredible panel of other guests (including Dr. Terry Wahls, Dr. Robyn Benson, Jessica Drummond, MSPT, CCN, Dr. Beth Darnall, Dr. Tyna Moore, DC, ND, Mira Dessey, Niki Gratrix, Dr. Jay Davidson, DC, Damian Dube, Dr. Reef Karim, Dr. Keesha Ewers, David Butler, PT, EdD, Marcelle Pick, OB/GYN NP, Karen Litzy, PT, DPT, Dr. Kim D’Eramo, Dr. Ann Shippy, MD, Dr. Mitchell Yass, By Debora Wayne, Dr. Ritamarie Loscalzo, MS, DC, CCN, DACBN, and Connie Zack – what a lineup!), for the Healing Pain Summit.

The Healing Pain Summit starts on Monday September 12th and goes through September 17th, 2016. You can register for the Summit for FREE through THIS LINK. After September 17th you can still access the interviews, but there is a charge for them.

I hope that The Healing Pain Summit helps those of you who are dealing with fluoroquinolone-induced pain!

I also hope that my participation in this wonderful event helps people to recognize that fluoroquinolones can cause chronic, and often debilitating, pain. I hope that my speaking out on the Healing Pain Summit helps people to “connect the dots.” There are a lot of people out there with fibromyalgia, chronic fatigue, joint pain, arthritis, rheumatoid arthritis, peripheral neuropathy, POTS, anxiety, and more, who have taken Cipro/ciprofloxacin, Levaquin/levofloxacin, or Avelox/moxifloxacin in the past, and those fluoroquinolones may have contributed to their painful conditions.

Please help me to spread the word about the pain caused by fluoroquinolones by sharing this post, with your doctors, friends, and loved ones. Thank you!!

Each guest on the Healing Pain Summit is offering a free gift to those who sign up. You can see the list of the free gifts HERE. The free gifts are incredibly useful and valuable, and I also hope that they help each of you!

A bit more about the Healing Pain Summit:

Through this expert event, Dr. Joe is completely rewriting the dialogue around pain, injury, healing and the growing epidemic of addiction to pain medications.

At no cost to you, Dr. Joe has gathered the top leaders in science and medicine to pull back the curtain and bring their top-notch, cutting-edge information on injury, illness, chronic pain, and pain management to you.  These are life-changing protocols and ideas that are just coming to light.

When you discover exactly how your body works and how to heal yourself naturally, you get your body working FOR you and not AGAINST you.

Thank you so much for joining me for the Healing Pain Summit! Also, a huge THANK YOU to Dr. Joe Tatta for including me and for the help in getting the word out about fluoroquinolone toxicity.

 

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K-PAX for Floxies

KPAX Immune

Just to note upfront, I have no affiliation with K-PAX. I have not been asked by them to write any of this. The following post is for your information only and I hope that it’s helpful!

In October, 2015 I received the following email:

I was recently introduced to K-PAX Pharmaceuticals who is conducting research on mitochondrial toxicity, thought to be a cause of the symptoms associated with Fluoroquinolone use.

Their main immune support formula was originally created to decrease the toxicity caused by antiviral medications in the HIV population. These medications caused similar symptoms, including peripheral neuropathy, as seen in Fluoroquinolone use. This Immune Formula was shown to achieve a 33% decrease in peripheral neuropathy for these patients. Their goal was to provide high levels of antioxidants in order to combat free radicals associated with the medication toxicity. Patients taking this formula also had a 26% increase in their CD4 count. This formula boosted their immunity by improving their mitochondrial health. This research was published in the Journal of AIDS (Kaiser, J. D., Campa, A. M., Ondercin, J. P., Leoung, G. S., Pless, R. F., & Baum, M. K. (2006). Micronutrient supplementation increases CD4 count in HIV-infected individuals on highly active antiretroviral therapy: a prospective, double-blinded, placebo-controlled trial. JAIDS Journal of Acquired Immune Deficiency Syndromes, 42(5), 523-528).

The reason I started looking in to K-PAX’s Immune Formula was after coming across the 2013 FDA Pharmacovigilance Review entitled, “Disabling Peripheral Neuropathy Associated with Systemic Fluorquinolone Exposure.” This paper draws the same connection between damaged mitochondria function from medication toxicity and peripheral neuropathy. In it, the FDA states, “A human prospective study was done to evaluate oxidative stress in patients taking different doses of ciprofloxacin, levofloxacin, and gatifloxacin for 5 days for complicated UTI. Superoxide dismutase (SOD), and endogenous antioxidant enzyme that removes free radicals, glutathione, another major antioxidant, plasma antioxidant status and lipid peroxides were evaluated in the 52 patients. Results showed that ciprofloxacin had a significant increase in lipid peroxide levels from the first to the fifth day, almost doubling. There was also a significant decrease from (73% to 32%) in SOD, as well as glutathione. The results were similar for levofloxacin, although to a lesser degree, but these results were not seen with gatifloxacin. This study showed how increase in lipid peroxides can quickly overwhelm what is left of the plasma antioxidants, leading to impairment of cell integrity and cell death.”

From what I understand, K-PAX Pharmaceuticals is currently focusing their research on chronic fatigue syndrome and fatigue related to other medical conditions. They are looking at mitochondrial dysfunction as the cause for these conditions as well. They just published a paper about their clinical trial using their Immune Support Formula for mitochondrial damage in patients with chronic fatigue syndrome. (Kaiser, J. D. (2015). A prospective, proof-of-concept investigation of KPAX002 in chronic fatigue syndrome. International journal of clinical and experimental medicine, 8(7), 11064).

I wanted to share this information with you and your readers as I have been doing a lot of research for my own condition and see more and more reference to mitochondrial damage as a culprit so I decided to give it a try. I have now been using the K-PAX Immune Formula for the past 6 months and have seen a significant decrease in my neuropathy and improvement in my energy level. My brain fog has lifted and I feel an improvement in my overall health. I like the fact that this product is actually helping to heal my mitochondria and reverse the cell damage caused by these toxic medications.

After corresponding with the author a bit, I sent an email to the folks at K-PAX asking if they had ever heard of it being used to help people through fluoroquinolone toxicity. The next day I received a phone call from the K-PAX Medical and Community Liaison, Deirdre. Deirdre wasn’t familiar with fluoroquinolone toxicity specifically, but she was familiar with mitochondrial toxicity, drug-induced mitochondrial toxicity, and many of the diseases that FQ toxicity resembles (like autoimmune diseases, fibromyalgia, ME/CFS, Gulf War Syndrome, etc.). Deirdre and I chatted extensively about fluoroquinolone toxicity and we decided that there was mutual interest in seeing how the K-PAX supplements worked for floxies. Deirdre/K-PAX offered to send 15 floxies a month’s supply of K-PAX Immune Support to see if it helped them.

I selected 15 floxies (first come, first serve – and I tried to get a decent age and gender mix) to receive the K-PAX Immune Support supplements and, about a week later, they started taking them.

Please note that this was in no way an official trial or experiment. I asked that all the floxie participants be willing to give me feedback about their experience, but that was the only obligation.

After everyone had time to complete the supplements, I sent out a survey to see how people liked the supplements and how they reacted.

You can view the survey results HERE.

To summarize*:

  • 37.5% of respondents had FQ toxicity symptom improvement while taking the supplements, 37.5% did not, and 25% of the respondents answered “other” to that question.
  • Fatigue relief and increased energy were two of the symptoms that some people experienced relief of.
  • 62.5% of respondents said that they would recommend K-PAX supplements to other floxies. Their reasons for recommending it to others included, “I have 20 years experience trying to recover, bio-available nutrients have been the only thing to combat the symptoms I have found,” and, “I have seen improvement in my fatigue,” and, ” if ANYTHING can help, it’s worth a try.”

If you would like to try the K-PAX supplements, they are available through the K-PAX store – http://www.kpaxpharm.com/. Additional information can be found on http://www.kpaxpharmaceuticals.com/.

I would also like to note that it was very generous of the K-PAX personnel to send their products to so many floxies, and for them to have a willing, open mind about fluoroquinolone toxicity. Their customer-service was phenomenal and I appreciate all their hard work on behalf of the floxie community very much! I also appreciate that they’re looking for solutions to complex, poorly-understood illnesses. Companies like K-PAX are part of the solution, as far as I can tell.

Again, I have no affiliation with K-PAX, and they didn’t even ask me to write this post. I’ve tried to be as open and transparent as possible, but if any of you have any questions about any of this, please don’t hesitate to contact me.

Thanks again to the K-PAX personnel and to all the floxies who were willing to try something new!

*Please note that the results of the survey may change if more people take the survey after this post is published.

 

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Progress Gained in Fluoroquinolone Toxicity Awareness

A lot of awareness of fluoroquinolone toxicity has been gained in the last few years.  In 2011, when I got floxed, the biggest facebook support group for “floxies” had about 600 members, news stories about fluoroquinolone toxicity were few and far between, and people seemed to be reluctant to share information about fluoroquinolones on their social media accounts. Today, the biggest facebook support group for floxies has almost 4,000 members (and many people have come and gone, so there have been more than 3,400 people who are aware enough of fluoroquinolone toxicity to join the group), news reports about the dangers of fluoroquinolones seem to come out on a weekly basis, and people are screaming about the dangers of fluoroquinolones in every way they can – through their social media accounts, telling their personal stories on web sites, commenting on news stories, and through talking to their families, friends, doctors and anyone else who will listen to them.

We’re making progress. We’re getting louder and stronger.

Even the FDA, the slow-moving behemoth that it is, has made some movement toward acknowledging the dangers of fluoroquinolones. In 2013 the warning label for fluoroquinolones was updated to note that PERMANENT peripheral neuropathy is a possible adverse effect of fluoroquinolones. The FDA stated that this change to the warning label was because of a review of AERS (Adverse Event Reporting System) data that found that many people were reporting disabling peripheral neuropathy as an effect of fluoroquinolones. AERS reports are patient reports. The FDA is listening to our screams.

The warning label change prompted a slew of lawsuits against Bayer (the maker of Cipro and Avelox) and Johnson & Johnson (maker of Levaquin), that hopefully will give some people justice and compensation for the harm that fluoroquinolones have done to them. Just having the door opened for justice is a step in the right direction – it’s progress.

In September, 2014 Dr. Charles Bennett filed two Citizen’s Petitions with the FDA asking them to change the fluoroquinolone warning labels to note “mitochondrial toxicity” and “psychiatric adverse effects.” The FDA’s response to those petitions is still pending, but the petitions themselves are valuable, both in that they are communications with the FDA, and that they give victims of fluoroquinolones credibility.

More than 60 news stories about the dangers of fluoroquinolones have aired in the last year. Each of these news stories was made possible by people reaching out to the news media. They wouldn’t have happened without people advocating for themselves and speaking up. With each news story, the word spreads about the dangers of fluoroquinolones, and the more people are aware of fluoroquinolone toxicity. With awareness of the dangers of fluoroquinolones comes avoidance of them, and that’s certainly progress.

One of the most influential news-stories about fluoroquinolones was “Local woman says popular antibiotic killed her husband” which aired on WSB-TV Atlanta. It had more than 135,000 social media shares, and Levaquin prescriptions in the Atlanta area dropped dramatically after it aired. It not only successfully spread the word about the devastating effects of fluoroquinolones, it changed prescription rates for fluoroquinolones. That’s huge! (Though, of course, it is horrible that Chris Dannelly lost his life. My eternal condolences to his family.)

A lot of progress in awareness of fluoroquinolone toxicity has been made through social media. When I first got floxed, people didn’t mention fluoroquinolone toxicity on their social media pages. There seemed to be a lot of silence, and even shame, around it. Now there are people who share information about the dangers of fluoroquinolones on their social media accounts regularly. With every “share” or “like” people are reached and progress toward awareness is made. Every little step rolls the ball in the right direction and gives us momentum. A huge THANK YOU to everyone who shares information about fluoroquinolone toxicity with their social network!

While it is sad to see the devastation that fluoroquinolones bring to every floxed individual, it is nice to see that the awareness of fluoroquinolone toxicity is reaching people, and that they are reaching out for support on facebook. The community of floxies helping and supporting each other in The Fluoroquinolone Toxicity Group has grown significantly. Each person who connects their health problems to fluoroquinolones is a step toward general awareness of fluoroquinolone toxicity. Everyone who joins The Fluoroquinolone Toxicity Group realizes the dangers of fluoroquinolones for themselves and their loved ones. Of course, I hate to hear of people getting hurt by fluoroquinolones, but with each new member to the group, awareness and support are gained.

Even this site has gained a lot of momentum. When it launched in 2013, Floxie Hope was getting about 5,000 visitors per month (which I was THRILLED with). Now 30,000+ visitors per month view Floxie Hope. I’m proud to be part of the movement toward awareness of the devastation that fluoroquinolones bring, and I hope to be part of movements to study fluoroquinolones and limit their use.

All of us who are telling our stories, supporting each other, and sharing information about fluoroquinolone toxicity are making progress. Thank you to all of you!

Admittedly, we have a long way to go before paradigms about the safety of fluoroquinolones shift in the general population.  There are still some doctors who are giving FQs out like candy.  There are still people who deny adverse effects of fluoroquinolones that are listed on the warning labels.  There is still a lot of research that needs to be done.  But progress has been made in the last year, and this post is to celebrate that progress.  Good job, friends!  Keep going!

 

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Repeated Use Doesn’t Make Fluoroquinolones Safe

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I posted “REPEATED USE DOESN’T MAKE FLUOROQUINOLONES SAFE” on www.hormonesmatter.com on 10/1/2014.  Please check it out and share it – thanks!!!

When doctors say things like, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.” it really irks me.  It irks me for the nine reasons listed, but the one that irks me most is that it’s so illogical.  Doing things wrong repeatedly does not make them right.  Thousands of prescriptions for Vioxx, Thalidomide and DES were written before they were taken off the market or restricted. I’m sure that the doctors who wrote those prescriptions thought that the drugs that they were prescribing were perfectly safe. They weren’t. Fluoroquinolones are not safe either. Lack of recognition of the severe adverse effects does not make them safe – it just means that doctors are as biased and blinded as anyone else. Look at the studies. Look at what Cipro, Levaquin and Avelox do to cells. Cellular destruction results in multi-symptom, chronic illness – in case that fyi is needed.

 

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